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Barriers to accessing palliative care: A review of the literature
Abstract
The aim was to review factors affecting patients' access to palliative care. First, the benefits of palliative care for comprehensive care of patients and their families are identified. Despite these benefits, universal standards for access are lacking and referral typically occurs later than is recommended, limiting access to best practice care. Factors relating to access are reviewed in detail. They are grouped conceptually, combining those related to organizational factors, patient, and family-related issues, which include characteristics of patients, preferences for curative care, and willingness to discuss and participate in palliative care, and factors attributed to physicians and health professionals, such as communication styles, sense of efficacy, perceptions of patient readiness, and knowledge of palliative care. Despite the accumulated evidence, the existing studies share methodological weaknesses, which are reviewed. Finally, recommendations for further work in this area are made.
... A number of systematic reviews have been undertaken to examine the barriers of accessing end-oflife care and the difficulty of the transition away from curative care [7,9,10]. This work consistently demonstrates a number of barriers to access, including lack of awareness or knowledge of the service, reluctance from referrers, family and patients, timeliness of referrals particularly for minority and structurally disadvantaged populations, eligibility criteria, resource availability, cultural appropriateness of the services and unclear dying trajectories [2,7,9,10]. ...
... A number of systematic reviews have been undertaken to examine the barriers of accessing end-oflife care and the difficulty of the transition away from curative care [7,9,10]. This work consistently demonstrates a number of barriers to access, including lack of awareness or knowledge of the service, reluctance from referrers, family and patients, timeliness of referrals particularly for minority and structurally disadvantaged populations, eligibility criteria, resource availability, cultural appropriateness of the services and unclear dying trajectories [2,7,9,10]. Previous work has reviewed research published during 1997-2003 and 2004-2012 thus an updated review examining barriers to end-of-life care is timely [9,10]. ...
... This work consistently demonstrates a number of barriers to access, including lack of awareness or knowledge of the service, reluctance from referrers, family and patients, timeliness of referrals particularly for minority and structurally disadvantaged populations, eligibility criteria, resource availability, cultural appropriateness of the services and unclear dying trajectories [2,7,9,10]. Previous work has reviewed research published during 1997-2003 and 2004-2012 thus an updated review examining barriers to end-of-life care is timely [9,10]. However, an important yet less researched area is why people decline a referral when they are offered services. ...
Background
Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care.
Methods
Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision.
Results
The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of ‘embodied decisions unfolding over time’. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people’s physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process.
Conclusions
Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients’ end-of-life care decision-making, in particular estimating how much time one has left and patients’ embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need further exploration. The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients.
... This might be attributable to the global lack of awareness and knowledge of palliative care among the general public [for a complete review, see (12)], particularly about the benefits it can offer to patients. The prevalence of negative beliefs and attitudes toward palliative care has been deemed as another major hurdle for palliative care access [e.g., (13)(14)(15)]. Typical negative beliefs held by patients and family caregivers regarding palliative care are negative connotations of deaths [e.g., (16,17)] and associations of palliative care acceptance with giving up hope [e.g., (13,14)]. ...
... The prevalence of negative beliefs and attitudes toward palliative care has been deemed as another major hurdle for palliative care access [e.g., (13)(14)(15)]. Typical negative beliefs held by patients and family caregivers regarding palliative care are negative connotations of deaths [e.g., (16,17)] and associations of palliative care acceptance with giving up hope [e.g., (13,14)]. Given that extant research suggests the vital role of palliative care awareness (18,19) and negative attitudes toward palliative care (18,20) in influencing people's willingness to accept palliative care, understanding what might affect and enhance the general public's awareness of and attitudes toward palliative care has become more critical than ever for public health and medical researchers and professionals. ...
... The findings are consistent with previous research, which suggests that women exhibit stronger health-seeking behaviors in response to both physical and mental health concerns than men (45)(46)(47). While the role of race was inconsistent in prior research [e.g., (2,13,14)], this study found that non-white had greater awareness of the goal of palliative care, which is similar to the finding that Black adult patients with advanced cancer were more likely to have received palliative care consultation than non-Hispanic White patients (48). This might be attributable to their higher symptom burden, which naturally demands the assistance of palliative care services to managing their symptoms (2). ...
Background
The global burden of serious health-related suffering requiring palliative care has been projected to grow significantly by 2060, which indicates the imminent need for integrating palliative care into health systems globally. Moreover, research evidence has been accumulating in support of the earlier adoption of palliative care into the treatment course of serious life-threatening illnesses. However, barriers to earlier access to palliative care still remain, which might be attributable to the global lack of awareness of palliative care and the prevalence of negative perceptions and attitudes. To address this, further investigation of the influencing factors of public perceptions of palliative care is imperative to help inform and develop effective targeted public health campaigns and education messages aimed at improving views of palliative care and thereby early access.
Methods
We used data from the Health Information National Trends Survey (HINTS), a nationally representative cross-sectional survey routinely administrated by the National Cancer Institute from the United States. Specifically, we analyzed the latest palliative care data from HINTS 5 Cycle 2 data set. Sociodemographic characteristics, individual factors such as self-perceived health status, and interpersonal factors such as relationship quality were examined as predictors of public awareness of and attitudes toward palliative care. Survey data were analyzed using SPSS 26 with multiple hierarchical regression tests.
Results
Results showed that people's quality of interpersonal relationships was a significant influencing factor of their awareness of and attitudes toward palliative care. Moreover, cancer diagnosis history and perceived healthcare quality were found to jointly affect their awareness of palliative care; perceived health status and patient centeredness interacted to influence their awareness of and attitudes toward palliative care. Finally, female, non-white, and poorer people were more aware of palliative care, while female and more educated people had more favorable attitudes.
Conclusions
The quality of social relationships emerges as a significant predictor of people's awareness of and attitude toward palliative care, as treatment options and decisions of serious life-threatening illnesses often involve the patients' family. The results hold strong implications for public health campaigns and education messages aiming at changing people's views of palliative care, which ultimately improve end-of-life outcomes.
... Access to quality care at end-of-life (EOL) is increasingly recognized as a human right [1], yet, many face significant barriers due to inequitable access [2][3][4]. Globally, it is estimated that only 14% of those in need receive palliative care [1], with barriers attributed to organizational factors and the deficiency of programs to deliver palliative care [2,4]; the dearth of clear policies and educational programmes that teach palliative care [3]; a lack of public awareness about palliative care [4]; and family related issues, such as the absence of families' willingness or ability to discuss and participate in palliative care [2]. Palliative care aims to improve quality of life and relieve suffering of patients facing life-threatening illness, as well as their family members, through a 'whole-person' approach to care that provides early identification, assessment and treatment of pain, as well as addressing all other physical, psychosocial, and spiritual issues [1]. ...
... Access to quality care at end-of-life (EOL) is increasingly recognized as a human right [1], yet, many face significant barriers due to inequitable access [2][3][4]. Globally, it is estimated that only 14% of those in need receive palliative care [1], with barriers attributed to organizational factors and the deficiency of programs to deliver palliative care [2,4]; the dearth of clear policies and educational programmes that teach palliative care [3]; a lack of public awareness about palliative care [4]; and family related issues, such as the absence of families' willingness or ability to discuss and participate in palliative care [2]. Palliative care aims to improve quality of life and relieve suffering of patients facing life-threatening illness, as well as their family members, through a 'whole-person' approach to care that provides early identification, assessment and treatment of pain, as well as addressing all other physical, psychosocial, and spiritual issues [1]. ...
... Access to quality care at end-of-life (EOL) is increasingly recognized as a human right [1], yet, many face significant barriers due to inequitable access [2][3][4]. Globally, it is estimated that only 14% of those in need receive palliative care [1], with barriers attributed to organizational factors and the deficiency of programs to deliver palliative care [2,4]; the dearth of clear policies and educational programmes that teach palliative care [3]; a lack of public awareness about palliative care [4]; and family related issues, such as the absence of families' willingness or ability to discuss and participate in palliative care [2]. Palliative care aims to improve quality of life and relieve suffering of patients facing life-threatening illness, as well as their family members, through a 'whole-person' approach to care that provides early identification, assessment and treatment of pain, as well as addressing all other physical, psychosocial, and spiritual issues [1]. ...
Background
Despite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous ‘normative’ populations, and as a result, the experiences of those with differing social positioning remain unheard. For example, populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. However, little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. The purpose of this study was to identify barriers to accessing care among structurally vulnerable people at EOL.
Methods
Ethnography informed by the critical theoretical perspectives of equity and social justice was employed. This research drew on 30 months of ethnographic data collection (i.e., observations, interviews) with structurally vulnerable people, their support persons, and service providers. Three hundred hours of observation were conducted in homes, shelters, transitional housing units, community-based service centres, on the street, and at health care appointments. The constant comparative method was used with data collection and analysis occurring concurrently.
Results
Five significant barriers to accessing care at EOL were identified, namely: (1) The survival imperative; (2) The normalization of dying; (3) The problem of identification; (4) Professional risk and safety management; and (5) The cracks of a ‘silo-ed’ care system. Together, findings unveil inequities in accessing care at EOL and emphasize how those who do not fit the ‘normative’ palliative-patient population type, for whom palliative care programs and policies are currently built, face significant access barriers.
Conclusions
Findings contribute a nuanced understanding of the needs of and barriers experienced by those who are both structurally vulnerable and facing a life-limiting illness. Such insights make visible gaps in service provision and provide information for service providers, and policy decision-makers alike, on ways to enhance the equitable provision of EOL care for all populations.
... Previous research of use and timing of SPCS showed that cancer patients were referred late (median: 16 days before death) in the disease trajectory but perceived cancer patients as a homogeneous group and did not examine differences in referral between cancer types [12,14]. However, different cancer types have distinct symptom clusters and illness trajectories, and physicians have reported that these aspects influenced their past decisions to refer to SPCS [15][16][17][18][19]. In addition, also non patient-related characteristics such as physician and staff's knowledge about palliative care and SPCS influences referral practices, practice specialty even influences patient's survival after referral to SPCS [18]. ...
... However, different cancer types have distinct symptom clusters and illness trajectories, and physicians have reported that these aspects influenced their past decisions to refer to SPCS [15][16][17][18][19]. In addition, also non patient-related characteristics such as physician and staff's knowledge about palliative care and SPCS influences referral practices, practice specialty even influences patient's survival after referral to SPCS [18]. This suggests that differences in referral and timing of referral might exist between oncology subspecialties and hence cancer types [20]. ...
... Physicians could tick more than one reason for each patient. The possible reasons were selected based on relevant literature about factors hindering the use of palliative care services [17,18,[26][27][28][29] and on preceding qualitative research on reasons for not using palliative care [30]. ...
Background
Referral to specialized palliative care services (SPCS) occurs often late in the illness trajectory but may differ across cancer types. We examined differences between cancer types in the use and timing of referral to specialized palliative care services (SPCS) and in the reasons for non-referral.
Methods
We conducted a population-based mortality follow-back survey among physicians who certified a representative sample of deaths in Flanders, Belgium. We focused only on sampled death cases of cancer (n = 2392). The questionnaire asked about the use of the existing types of SPCS and the timing of referral to these services.
Results
Response rate was 58% (1394/2392). Patients who died from breast, respiratory, head and neck, genitourinary or gastrointestinal cancer had higher chances of using SPCS compared to hematologic cancer patients. The most prevalent reason for non-referral was that regular care sufficiently addressed palliative and supportive care needs (51%). This differed significantly between cancer types ranging from 77,8% for breast cancer and 42.1% for hematologic cancer. A second prevalent reason for not using SPCS was that it was not meaningful (enough) (23.9%), particularly for hematologic malignancies (35,1%) and only in 5.3% for breast cancer.
Conclusion
Differences in referral across different types of cancer were found. Referral is more often delayed or not initiated for patients with hematologic cancer, possibly due to differences in illness trajectory. An influencing reason is that physicians perceive palliative care as not meaningful or not meaningful enough for these patients which may be linked to the uncertainty in the disease trajectory of hematologic malignancies.
... Moreover, the understanding of the situation is complicated by limited research in this relatively new field in Pakistan [6,11,12]. Lack of comprehension of the concept and scope of PC and misconceptions about it are a barrier to the uptake and meaningful utilisation of this comprehensive approach by patients and families [5,[11][12][13]. Misperceptions are common in the public and amongst caregivers and can adversely impact the uptake of this beneficial service even when it is available [10]. ...
... This study's findings will enable the development of focused education strategies to fill the knowledge gaps in the Pakistani context. Even when health care providers or physicians are reluctant to offer PC as an option due to feelings of failure or lack of information, they will be more likely to offer PC if caregivers or the patient are knowledgeable about it and request it [13,14]. It is essential to increase awareness and enhance knowledge about PC in both patients and caregivers while simultaneously dispelling misperceptions as PC services are developed at a public health level [14,32,38,39]. ...
Background
Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach.
Method
A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence’s, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant.
Results
Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes.
Conclusion
Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.
... Potential facilitators for palliative care use include the availability of relevant specialized secondary services in integrated palliative care, which were shown to be highly valuable both for the hospital (lower costs) and for the patient (better use to certain palliative care services including improving functional status) [8]. In addition, these studies found that stakeholder engagement, financial support, a supportive learning environment for HPs, and community networks might facilitate palliative care use [6], as well as appropriate communication styles, perceptions of patient readiness [9], knowledge of palliative care [7,9], and education on palliative care among HPs [7]. ...
... Potential facilitators for palliative care use include the availability of relevant specialized secondary services in integrated palliative care, which were shown to be highly valuable both for the hospital (lower costs) and for the patient (better use to certain palliative care services including improving functional status) [8]. In addition, these studies found that stakeholder engagement, financial support, a supportive learning environment for HPs, and community networks might facilitate palliative care use [6], as well as appropriate communication styles, perceptions of patient readiness [9], knowledge of palliative care [7,9], and education on palliative care among HPs [7]. ...
Abstract
Background: Despite the high potential to improve the quality of life of patients and families, palliative care
services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and
nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers
-knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the
deserved attention to the cognitive barriers and facilitators to palliative care services utilization.
This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and
hemato-oncology from the experiences of health professionals, patients, and their families.
Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and
Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication &
Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers,
facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and
full-texts, 52 studies were included in the qualitative thematic analysis.
Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative
care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The
results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural
dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the
healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is
strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and
families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients’ openness to
their own needs).
Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare
professionals’ communication and emotion management skills should be enhanced. Additionally, a cultural shift,
concerning attitudes and beliefs towards palliative care, should be encouraged.
... PC referrals still occur late, when patients are in the terminal phase of their illness, with some missed opportunities altogether [11][12][13]. Common barriers include inability to accept a diagnosis of incurable illness; unwillingness or inability of clinicians to communicate bad news and discuss PC; a negative image of PC by patients, families and clinicians; and a lack of knowledge or comprehension about PC and the aim or scope of PC services [14][15][16][17]. In regard to negative perceptions, studies show that patients, families/caregivers and clinicians still associate PC largely with end-of-life care, sometimes viewed as a 'last resort' or 'no hope left' [14,[18][19][20][21]. ...
... Common barriers include inability to accept a diagnosis of incurable illness; unwillingness or inability of clinicians to communicate bad news and discuss PC; a negative image of PC by patients, families and clinicians; and a lack of knowledge or comprehension about PC and the aim or scope of PC services [14][15][16][17]. In regard to negative perceptions, studies show that patients, families/caregivers and clinicians still associate PC largely with end-of-life care, sometimes viewed as a 'last resort' or 'no hope left' [14,[18][19][20][21]. A recently published American population-based survey by Shalev et al. showed that approximately half of respondents had at least one misperception about PC, including associating it with end-of-life care, care only for the elderly and comfort care [22]. ...
Purpose
Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients.
Methods
We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N = 103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients’ perceptions.
Results
Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains:
• Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p = 0.039).
• Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p = 0.005, p = 0.045, respectively).
• Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p = 0.047) and understanding that oncology (p < 0.005) and anti-cancer treatment (p = 0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to ‘supportive care’ services (versus PC).
Conclusions
Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.
... D espite decades of educating both professionals and the general public, and recognition as a medical specialty in many countries, the message of what palliative care is and how it fits into medical care remains unclear to some. 1,2 Societal and cultural taboos about death and dying still exist. Perhaps the situation is improving: the dilemmas of caring for an aging population within modern medicine are being highlighted, 3,4 and there is a lot in the media about end-of-life care, in particular when the spotlight falls on the debates around euthanasia and assisted suicide. ...
... A literature review found that access to services was hindered by poor knowledge of, and poor communication about, palliative care. 2 There are issues on both sides of the consultation table, limiting benefits arising from early referrals. 5,6 Is there a more effective way of delivering our message of holistic care? ...
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... Despite global efforts to improve health and palliative care integration, barriers to optimal delivery of palliative care services remain. Referrals to palliative care are unfortunately made too late, when patients are in the final stages of their illness, causing some opportunities to be missed [21][22][23]. Common barriers to timely referral to palliative care include the inability to accept a diagnosis of an incurable disease, clinicians' unwillingness or inability to communicate bad news and discuss palliative care, negative biases by patients, families, and clinicians toward palliative care, and a lack of information about the purpose or scope of palliative care and palliative care services [24,25]. Regarding negative perceptions, research shows that patients, families/caregivers, and clinicians still largely associate palliative care with end-of-life care, sometimes viewing it as a "last resort" or "hope lost" [26,27]. ...
Patients with life-threatening illnesses who face death may suffer physically, psychosocially, and spiritually. The constant presence of illness and episodes of worsening illness is a persistent reminder of forthcoming death and can lead to feelings of fear. Existential issues may arise in addition to the physical suffering. Patients’ approaches to life, illness, and ideal quality of life were found to create a sphere of influence that shaped their palliative care experience. Especially at the end of life, patients’ preferences for help in living a meaningful life are connected to the aim of palliative care “to improve quality of life,” which includes the patients’ perspectives of what is considered meaningful and important. Patients’ perceptions of their care may be seen as an indicator of quality of care and is considered important for the development and improvement of palliative care.
... This work has several implications for research and clinical practice. First, it updates the evidence on barriers from previous reviews, which had identified, for example, inadequate knowledge and education among health care professionals, a lack of referral criteria, patients' old age, noncancer condition, minority status, 22 preferences for curative care 125 and negative stereotypes about palliative care. 120 This review thus highlights a chronic persistence of many of these barriers over decades. ...
Background: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs.
Aim: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients.
Design: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477).
Data sources: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed.
Results: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Inter-individual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a non-cancer condition or a low symptom burden, the focus on cure in hospitals, non-acceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians’ emotional discomfort and difficult prognostication.
Conclusion: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.
... These results also suggest that those living with non-cancerous chronic disease might be facing several social disadvantages that place them at risk for worsened health-care outcomes and poor quality of life. It is well known that those with multiple and diverse intersecting identities (e.g., across race, ethnicity, ability status, education attainment, and income) are often marginalized and experience health-care inequalities (Iannacone 2017;Love and Liversage 2014). Individuals who are underprivileged are known to underuse palliative care, often because the existing structural systems that exist in health care are too large to overcome (Belisomo 2018; Hlubocky 2014; Iannacone 2017). ...
Objectives:
Limited evidence investigates how knowledge, misconceptions, and beliefs about palliative care vary across patients with cancerous versus non-cancerous chronic disease. We examined the knowledge of and misconceptions about palliative care among these groups.
Methods:
We used weighted data from the National Cancer Institute Health Information National Trends Survey 5 (Cycle 2) for nationally representative estimates and logistic regression to adjust for respondent characteristics. We identified respondents who reported having (1) cancer ([n = 585]; breast, lung, and colorectal), (2) chronic conditions ([n = 543]; heart failure, lung disease, or chronic obstructive pulmonary disorder), or (3) neither cancer nor other chronic conditions (n = 2,376).
Results:
Compared to cancer respondents, chronic condition respondents were more likely to report being Black or Hispanic, report a disability, and have lower socioeconomic status. In the sample, 65.6% of cancer respondents and 72.8% chronic conditions respondents reported they had never heard of palliative care. Chronic condition respondents were significantly (p < 0.05) less likely to report high palliative care knowledge than cancer respondents (9.1% vs. 16.6%, respectively). In adjusted analyses, cancer respondents had greater odds of high palliative care knowledge (odd ratio [OR] = 1.70; 95% confidence interval [CI] = 1.01, 2.86) compared to respondents with neither cancer nor chronic disease; chronic condition respondents did not have increased odds (OR = 0.96; CI = 0.59, 1.54).
Significance of results:
Disparities in palliative care knowledge exist among people with non-cancerous chronic disease compared to cancer. Supportive educational efforts to boost knowledge about palliative care remains urgent and is critical for promoting equity, particularly for underserved people with chronic illnesses.
... However, barriers to use PC exist on the part of patients, families, health professionals, and health system structures [14,15]. The key determinants of willingness to use [16][17][18][19] are patients' knowledge of available options, attitudes, or beliefs about specific treatments. ...
Purpose
Patients with hematologic malignancies (HM) receive palliative care (PC) less often and later than patients with solid tumors (ST). Patients’ lack of knowledge about PC and negative feelings about PC are barriers to their willingness to use PC. Is there a difference between patients with HM and ST in their knowledge and willingness to use PC?
Methods
Two hundred ten patients (85 HM, 125 ST) from an oncology day clinic at a university hospital participated in this cross-sectional, questionnaire-based survey.
Results
Patients with HM and ST had high knowledge and mainly positive feelings about PC. More than half of the patients answered that they would feel reassured by the use of PC, and one-third would feel anxious or hopeless. The majority of patients (58.3%) were willing to use PC. There are no significant differences between patients with HM and ST. In multiple regression analysis, perceived chance of cure and feelings of reassurance and anxiety are associated with willingness to use PC, but not with the HM/ST disease group. More than half (53.9%) of the participants would like the treating physician to choose the timing of a discussion about PC.
Conclusion
Our study shows a high level of knowledge and relatively positive feelings of patients about PC, with no differences between patients with HM or ST. They expect their treating physician to initiate communication about PC. Communication should include the patient’s feelings about PC and their chances of a cure.
... Access to palliative care is variable, even for the general population in many countries with universal standards lacking, late or delayed referral and limited access to best care practices. 84 Recent reviews and synthesis of evidence describing clinical care in this field reveal similarly variable provision. [85][86][87] Research on EoL care for people with mental health problems is limited 35 and in the absence of high-quality intervention research, case studies provide an important source of knowledge. ...
Objectives
People with severe mental illness (SMI) have significant comorbidities and reduced life expectancy. The objective of the review reported in this paper was to synthesise material from case studies relating to the organisation, provision and receipt of care for people with SMI who have an end-of-life (EoL) diagnosis.
Design
Systematic review and thematic synthesis.
Data sources
MEDLINE, PsycINFO, EMBASE, HMIC, AMED, CINAHL, CENTRAL, ASSIA, DARE and Web of Science from inception to December 2019. Supplementary searching for additional material including grey literature along with 62 organisational websites.
Results
Of the 11 904 citations retrieved, 42 papers reporting 51 case studies were identified and are reported here. Twenty-five of the forty-two case study papers met seven, or more quality criteria, with eight meeting half or less. Attributes of case study subjects included that just over half were men, had a mean age of 55 years, psychotic illnesses dominated and the EoL condition was in most cases a cancer. Analysis generated themes as follows diagnostic delay and overshadowing, decision capacity and dilemmas, medical futility, individuals and their networks, care provision.
Conclusions
In the absence of high-quality intervention studies, this evidence synthesis indicates that cross disciplinary care is supported within the context of established therapeutic relationships. Attention to potential delay and diagnostic overshadowing is required in care provision. The values and preferences of individuals with severe mental illness experiencing an end-of-life condition should be recognised.
PROSPERO registration number
CRD42018108988.
... Only through the appropriate use of palliative care approaches can optimal benefits be achieved. However, many barriers to palliative care are experienced within and across situations and healthcare settings, preventing timely access to care (Aldridge et al., 2016;Love & Liversage, 2014). ...
... Despite a growth in palliative care services, access and referral patterns are inconsistent, even in high-income countries, and only a minority of people who would benefit from such care receive it. 5 A further factor decreasing the likelihood of people dying at home is late referral to palliative care. 6 A number of studies have identified barriers to earlier referral to palliative care including lack of training of medical professionals, 7 organizational factors such as the perceived dichotomy between a curative approach and palliative care, and reluctance of physicians to refer. ...
Background: Despite a growth in palliative care services, access and referral patterns are inconsistent and only a minority of people who would benefit from such care receive it. Use of palliative care is also affected by community attitudes toward palliative care. As such, determining community attitudes toward palliative care is crucial. We also need to determine what predicts attitudes in order to provide appropriate information and education. Objectives: The 2 research questions were: (1) What are community attitudes toward palliative care? and (2) what are the determinants of community attitudes toward palliative care? Design: A tripartite model of attitudes was used, which articulates attitudes as comprising knowledge and experience, emotions, and beliefs. A cross-sectional descriptive survey was used. Participants: A community sample of 180 participants completed the survey. Results: The average attitude and belief responses were very positive, the average emotions responses were somewhat positive. The sample had good knowledge of palliative care. Lowest knowledge scores were reported for the items: "Euthanasia is not part of palliative care," "Palliative care does not prolong or shorten life," and "Specialist palliative care is only available in hospitals." After controlling place of birth and age, it was found that beliefs, emotions, and knowledge each accounted for a significant proportion of unique variance in attitude toward palliative care. Each variable had a positive relationship with attitude. Conclusion: Beliefs, emotions, and knowledge all need to be incorporated into palliative care community education programs.
... Although a vast majority of the palliative care patients may have compromised oral health, they seldom receive oral care services (16,(46)(47)(48). This could be because of the seriousness of their medical conditions, their illness taking the priority, medical care providers primarily focusing on their general health with little or no emphasis on their oral health, a lack of dental insurance, high dental treatment costs, not understanding the importance of oral health, a lack of access to the dental care services, unwillingness on behalf of dental service providers to provide care to these individuals, and a lack of specialized dental training to treat these individuals (49)(50)(51)(52). Often, the importance of dental care is overlooked and dentists are not included in the palliative care teams. ...
Individuals with advance-stage illnesses frequently face illness or treatment-related adverse effects in the mouth. These adverse effects can have serious local and systemic consequences. Despite that, the importance of oral care in this population is often overlooked and there are no definitive guidelines as to what kind of oral care should be provided to these individuals. Given that, our study aims were to explore and better understand the oral health-related concerns, perceived oral care needs of palliative care patients and the berries that face in accessing dental care services. We conducted a qualitative description study by recruiting 11 participants with advanced stage health
conditions from the outpatient palliative care services of the University of Iowa Hospitals and Clinics. We conducted in-depth, semi-structured interviews and audiotaped all the interviews. All interviews were fully transcribed verbatim. All participants had oral concerns although they varied widely from person to person and their illness statuses. The most significant concerns were related to dry mouth, loose dentures, and eating difficulties. Among those who stated that they would seek dental care if required, they were not planning on seeking dental care even though they had treatable oral problems. Also, some of them faced significant barriers to accessing dental care. The frequently observed barriers were their illness and illness-related priorities, finances, feeling discriminated against by the dentist, and a dislike towards the dentist. Providing oral health-related information to the palliative care clinicians about the significance of oral health and its impact, incorporating a dental care provider in palliative care team, and providing timely information to individuals with advanced health conditions may enhance the understanding of their oral health problems and help them better manage their oral health and also, may help them in seeking the needed oral care.
... One potential psychosocial barrier to palliative care uptake early in the illness trajectory is misperceptions and negative beliefs about palliative care that caregivers or surrogate decision makers hold before engaging with the medical system or at the time of diagnosis [15][16][17][18]. Patients and family members who are not knowledgeable about palliative care at the time of diagnosis are unlikely to ask for a palliative consultation because they do not know to ask. ...
Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care following subsequent illness diagnosis. We explored knowledge and beliefs about palliative care among the general public using nationally-representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care (n = 1,162, Mage = 51.8, 64% female) were queried on knowledge and beliefs. We examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding “don’t know” to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond “don’t know,” but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). Findings suggest a need to improve awareness and attitudes about palliative care.
... Despite a growth in palliative care services, access and referral patterns are inconsistent, even in high-income countries, and only a minority of people who would benefit from such care receive it. 5 A further factor decreasing the likelihood of people dying at home is late referral to palliative care. 6 A number of studies have identified barriers to earlier referral to palliative care including lack of training of medical professionals, 7 organizational factors such as the perceived dichotomy between a curative approach and palliative care, and reluctance of physicians to refer. ...
Background:
Despite a growth in palliative care services, access and referral patterns are inconsistent and only a minority of people who would benefit from such care receive it. Use of palliative care is also affected by community attitudes toward palliative care. As such, determining community attitudes toward palliative care is crucial. We also need to determine what predicts attitudes in order to provide appropriate information and education.
Objectives:
The 2 research questions were: (1) What are community attitudes toward palliative care? and (2) what are the determinants of community attitudes toward palliative care?
Design:
A tripartite model of attitudes was used, which articulates attitudes as comprising knowledge and experience, emotions, and beliefs. A cross-sectional descriptive survey was used.
Participants:
A community sample of 180 participants completed the survey.
Results:
The average attitude and belief responses were very positive, the average emotions responses were somewhat positive. The sample had good knowledge of palliative care. Lowest knowledge scores were reported for the items: "Euthanasia is not part of palliative care," "Palliative care does not prolong or shorten life," and "Specialist palliative care is only available in hospitals." After controlling place of birth and age, it was found that beliefs, emotions, and knowledge each accounted for a significant proportion of unique variance in attitude toward palliative care. Each variable had a positive relationship with attitude.
Conclusion:
Beliefs, emotions, and knowledge all need to be incorporated into palliative care community education programs.
... In terms of the patient and family, we therefore have a duty of care to ensure the discharge would be feasible, safe, supported, and beneficial. Modern healthcare systems can challenge the decisions we make in these scenarios, e.g., moving someone because of acute hospital bed pressures or requiring the patient to meet the specialist palliative care requirements for a hospice bed (Bergenholtz et al. 2016;Love and Liversage 2014). Overall, palliative care teams aim to respect the wishes of people who are dying as much as possible and support their families through whatever decision is made. ...
... 11,12 However, these analyses focused on the patients who had been seen by physicians and were seeking health care for the existing terminal illness. Previous studies have reported many barriers to accessing the palliative care use, such as patient and family reluctance, 13 fear, 14 misconception, 15,16 ignorance and lack of awareness of resources, 13 worrisome on inferior survival, 17 communication difficulties, 18 and so on. Increasing the knowledge and overall awareness of palliative care in public is crucial for reducing or eliminating these barriers. ...
CONTEXT:
Palliative care will play an important role to alleviate disease suffering and improve quality of life for cancer patients and their family caregivers.
OBJECTIVE:
We examined the knowledge penetration of palliative care in a nationally representative sample of U.S. adults.
METHODS:
We used the 2018 NCI's Health Information National Trends Survey to determine the proportion of respondents who had knowledge of palliative care as well as the depth and sources of their knowledge. We used the Pearson chi-square test and a multivariable logistic regression model to assess the association of respondents' basic demographic characteristics as well as health status and having knowledge of palliative care.
RESULTS:
We identified 3194 respondents (Weighted sample size: 229,591,005) who met the inclusion criteria. About 71% (2097) of all respondents had no knowledge of palliative care. 84.5% of Hispanic respondents had no knowledge of palliative care. Multivariable analyses indicated the middle-aged (50-64 years old, OR, 1.58; 95% CI, 1.15-2.19, P = 0.006) and elder population (65 years or older, OR, 1.70, 95% CI, 1.30-2.22, P < 0.001) have a significantly better knowledge of palliative care than those under age 50. Common misconceptions existed in respondents, even those who had self-reported adequate knowledge of palliative care.
CONCLUSIONS:
The proportion of adults who have knowledge of palliative care is low in the United States. Greater efforts are needed to promote palliative care and reduce the misconceptions of palliative care in the general population.
... Ahmed et al. [14] also reported lack of healthcare professionals' education and absence of standardized criteria for screening patients with symptomatic needs as barriers to their referral for PC. In addition, Love and Liversage [15] demonstrated that preference for curative treatment and communication skills impact PC referrals. These referrals are mainly for physical symptom control, while psychosocial issues usually get neglected. ...
Head-and-neck cancers (HNCs) are significant in India. Poverty, illiteracy, lack of access to healthcare, and poor treatment infrastructure pose a major challenge in the management of these cancers. The majority of these patients present with advanced stage and are not amenable to curative treatment. The majority have the potential to benefit from palliative care (PC) interventions. Our experience has been that usually the referrals from HNC clinic for PC are at the end-of-life or terminal stage. Unfortunately, in the state of intractable suffering, it is difficult for patients to understand and fully benefit from the role of PC. Developing an effective working relationship and communication between the PC service and referring surgeons or oncologists is a key to foster more timely, appropriate referral, as both patients and clinicians often misunderstand or fail to recognize the role of PC. In preparation for a quality improvement project to improve access to PC for HNC patients at the All India Institute of Medical Sciences, we reviewed the needs, challenges, conceptual models, and potential of early integration of PC in advanced HNC patients. © 2019 Indian Journal of Palliative Care | Published by Wolters Kluwer-Medknow.
... However patients who have cancer report that physicians are particularly inadequate in discussing emotional symptoms, life support preferences and hospice care, regardless of the patient's age or disease stage [25]. Indeed, other studies have found that oncology practitioners often lack communication skills training and have discomfort with difficult discussions that include mortality acknowledgement and the introduction of a palliative approach to care [26][27][28][29]. This suggests that oncology clinicians may benefit from further training and continuing professional development to enhance their communication skills in order to best support patients and their families in GoC conversations [30]. ...
Background
Cancer is the leading cause of death in the developed world, and yet healthcare practitioners infrequently discuss goals of care (GoC) with hospitalized cancer patients. We sought to identify barriers to GoC discussions from the perspectives of staff oncologists, oncology residents, and oncology nurses.
Methods
This was a single center survey of staff oncologists, oncology residents, and inpatient oncology nurses. Barriers to GoC discussions were assessed on a 7-point Likert scale (1 = extremely unimportant; 7 = extremely important).
Results
Between July 2013 and May 2014, of 185 eligible oncology clinicians, 30 staff oncologists, 10 oncology residents, and 28 oncology nurses returned surveys (response rate of 37%). The most important barriers to GoC discussions were patient and family factors. They included family members’ difficulty accepting poor prognoses (mean score 5.9, 95% CI [5.7, 6.2]), lack of family agreement in the goals of care (mean score 5.8, 95% CI [5.5, 6.1]), difficulty understanding the limitations of life-sustaining treatments (mean score 5.8, 95% CI [5.6, 6.1]), lack of patients’ capacity to make goals of care decisions (mean score 5.7, 95% CI [5.5, 6.0]), and language barriers (mean score 5.7, 95% CI [5.4, 5.9]). Participants viewed system factors and healthcare provider factors as less important barriers.
Conclusions
Oncology practitioners perceive patient and family factors as the most limiting barriers to GoC discussions. Our findings underscore the need for oncology clinicians to be equipped with strong communication skills to help patients and families navigate GoC discussions.
Electronic supplementary material
The online version of this article (10.1186/s12885-019-5333-x) contains supplementary material, which is available to authorized users.
... In terms of the patient and family, we therefore have a duty of care to ensure the discharge would be feasible, safe, supported, and beneficial. Modern healthcare systems can challenge the decisions we make in these scenarios, e.g., moving someone because of acute hospital bed pressures or requiring the patient to meet the specialist palliative care requirements for a hospice bed (Bergenholtz et al. 2016;Love and Liversage 2014). Overall, palliative care teams aim to respect the wishes of people who are dying as much as possible and support their families through whatever decision is made. ...
The preferred place of death is an important consideration in end-of-life care, especially when the dying person is definite about their choice. The preferred place of care may well be the same location, but this is not always the case. When the two venues are different, and the patient’s prognosis is poor, a decision has to be made whether to move the patient or not. The expectation to not only transfer the dying person in a timely fashion but also to minimize the time in the current setting often makes the situation a palliative care emergency. However, should the move occur at all? The risk of dying in transit may be high. Furthermore, respecting the wishes of the dying person needs to be balanced with the practicalities of safe ongoing care. These are practical and ethical decisions that should be made as early as possible.
How do we facilitate the smooth transfer from one location to another? Coordination and communication are vital in planning the process and supporting the discharge. The provision of the right medications and equipment, relevant information, and strategies for managing future problems should increase the chance of a successful transfer. Sometimes a smooth transfer will not be possible, but patients and family members will usually be happy with a successful one.
... Physicians tend to discuss prognosis with patients late in their illness trajectory [25][26][27][28] resulting in late referrals to palliative care [29], despite early integration of palliative care into cancer care being recognized as the "gold standard" for patients with advanced/metastatic cancer [30]. To achieve this goal, understanding the time terminally ill cancer patients spend in each state of prognostic awareness is important to identify trigger points for facilitating transitions to higher prognostic-awareness states, especially for patients who are ready to receive prognostic information to make EOL-care decisions. ...
Background
Developing accurate prognostic awareness, a cornerstone of preference-based end-of-life (EOL) care decision-making, is a dynamic process involving more prognostic-awareness states than knowing or not knowing. Understanding the transition probabilities and time spent in each prognostic-awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic-awareness states between consecutive time points in 247 cancer patients’ last 6 months and estimated the time spent in each state.
Methods
Prognostic awareness was categorized into four states: (a) unknown and not wanting to know, state 1; (b) unknown but wanting to know, state 2; (c) inaccurate awareness, state 3; and (d) accurate awareness, state 4. Transitional probabilities were examined by multistate Markov modeling.
Results
Initially, 59.5% of patients had accurate prognostic awareness, whereas the probabilities of being in states 1–3 were 8.1%, 17.4%, and 15.0%, respectively. Patients’ prognostic awareness generally remained unchanged (probabilities of remaining in the same state: 45.5%–92.9%). If prognostic awareness changed, it tended to shift toward higher prognostic-awareness states (probabilities of shifting to state 4 were 23.2%–36.6% for patients initially in states 1–3, followed by probabilities of shifting to state 3 for those in states 1 and 2 [9.8%–10.1%]). Patients were estimated to spend 1.29, 0.42, 0.68, and 3.61 months in states 1–4, respectively, in their last 6 months.
Conclusion
Terminally ill cancer patients’ prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients’ transitions toward accurate prognostic awareness in a timely manner to promote preference-based EOL decisions.
... However, despite the growth in drivers of palliative care needs, access to palliative care remains inconsistent, even in high-income countries, with the number of providers varying from 5 to 680 per million population [12]. Overall, only a minority who need palliative care, perhaps as low as 14%, receive it [12,[15][16][17]. ...
Background
Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified. The present study aims to estimate future population palliative care need in two high-income countries. Methods
We used mortality statistics for England and Wales from 2006 to 2014. Building on previous diagnosis-based approaches, we calculated age- and sex-specific proportions of deaths from defined chronic progressive illnesses to estimate the prevalence of palliative care need in the population. We calculated annual change over the 9-year period. Using explicit assumptions about change in disease prevalence over time, and official mortality forecasts, we modelled palliative care need up to 2040. We also undertook separate projections for dementia, cancer and organ failure. ResultsBy 2040, annual deaths in England and Wales are projected to rise by 25.4% (from 501,424 in 2014 to 628,659). If age- and sex-specific proportions with palliative care needs remain the same as in 2014, the number of people requiring palliative care will grow by 25.0% (from 375,398 to 469,305 people/year). However, if the upward trend observed from 2006 to 2014 continues, the increase will be of 42.4% (161,842 more people/year, total 537,240). In addition, disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) will be the main drivers of increased need. Conclusions
If recent mortality trends continue, 160,000 more people in England and Wales will need palliative care by 2040. Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need.
... com T he challenges and barriers facing contemporary palliative care require dynamic changes in clinical practice, interdisciplinary collaboration and connection with the broader community. 1 Virtual communities of practice (vCoPs) represent one response, describing the activities of a group of individuals united in action and in the meaning that action has for them and the larger collective. 2 Social media platforms provide unique catalysts for the establishment of vCoPs. Existing primarily online, vCoPs cross geographical, cultural and socioeconomic boundaries to enable a new level of shared engagement needed to meet the significant palliative care needs of our aging populations. ...
... com T he challenges and barriers facing contemporary palliative care require dynamic changes in clinical practice, interdisciplinary collaboration and connection with the broader community. 1 Virtual communities of practice (vCoPs) represent one response, describing the activities of a group of individuals united in action and in the meaning that action has for them and the larger collective. 2 Social media platforms provide unique catalysts for the establishment of vCoPs. Existing primarily online, vCoPs cross geographical, cultural and socioeconomic boundaries to enable a new level of shared engagement needed to meet the significant palliative care needs of our aging populations. ...
Background: Palliative care (PC) has been shown to benefit patients with metastatic cancer by managing symptoms, improving quality of life, and facilitating advance care planning. Despite this, PC is often misunderstood and underutilized. Objective: To deepen our understanding of PC barriers seen among the spine metastasis population. Design/Setting: Between March 2021 and August 2022, people with metastatic spine tumors (MSTs) at a multidisciplinary oncology clinic were administered a survey on PC prior to their scheduled appointment. These responses were compared with the Health Information National Trends Survey 5 (HINTS 5), which is a validated survey created by the National Cancer Institute between February and June of 2020. Chi-squared statistical analysis was used. Results: Fifty-six people with MST were compared with 3795 patients from the HINTS 5 database. People with MST reported a significantly higher baseline understanding of PC when compared with the general population (GP) (chi-squared = 34.4, p = <0.0001). People with MST had a higher frequency of disagreement with the statement "PC is equivalent with death" when compared with the GP (chi-squared = 12.8, p = 0.0124). Over 25% of the MST group reported no understanding of PC. Conclusion: MST patients are often referred to PC services due to the extreme symptom burden of their disease. Based on this study, in comparison to the GP, people with MST tended to have a more accurate and well-adjusted perception of the goals and functions of PC. Although reassuring, there remains a high proportion of patients who have no knowledge of PC, and groups erroneously associated PC with hospice status.
Background:
Physicians' recognition of end of life (EOL) has key influences on patients' "good death".
Aim:
We aimed to study physicians' attitude towards EOL, and to analyze the relationship between physicians' assessment and patients' actual survival and the trigger effect on patient's access to palliative consultation and palliative care.
Design:
This is a multi-center retrospective cohort study in seven community hospitals in Taiwan.
Methods:
Inpatients admitted between March 1, 2016 and December 31, 2020, scored ≧ 4 points using Taiwan version-Palliative Care Screening Tool (TW-PCST), and expired before December 31, 2020 were enrolled. Physicians answered three questions regarding these inpatients: "surprised of mortality within 6-12 months", "EOL", and "in need of palliative care". We followed up patients' actual survival and access to palliative consultation and services.
Results:
We enrolled 10,304 cases. There was high correlation among the three questions. The median survival of patients with "not surprised of death within 6-12 months", "EOL", and "needing palliative care" were 68, 60, and 58 days, respectively. Those with opposite responses were 206 days, 166 days, and 186 days, respectively. Patients' main diagnosis, TW-PCST score, physicians' palliative care qualifications and reward measures were all associated with physicians' recognition of EOL. Physicians' assessment, physicians' training, disease characteristics and TW-PSCT scores were all associated with palliative consultation and palliative care.
Conclusions:
Physicians are still over optimistic in recognizing inpatients' survival and palliative care needs. EOL talks can be initiated when the TW-PCST score is high. Universal palliative care training can be integrated into medical education.
Multiple studies demonstrate most consumers do not know about palliative care. And, since January 2018, California's Medi-Cal Managed Care patients have been eligible for palliative care services under Senate Bill 1004 (SB 1004). Yet, the uptake of palliative care services was underwhelming. The purpose of this study was to explore patient-centered barriers to palliative care. We recruited 27 adult Medicaid managed care patients from community-based sites in Los Angeles and conducted semi-structured qualitative interviews. Each participant was asked questions to elicit their knowledge about, and perspectives on, palliative care as well as their preferred communication approaches for receiving a referral to palliative care. The interviews were audio-recorded and transcribed verbatim. We used a grounded theory approach to guide our analysis of primary themes. Our findings indicated that the barriers to palliative care referrals among this population included lack of knowledge about palliative care and available services; the reliance on, and trust in, primary care physicians for information; language and cultural barriers; housing instability; and patient believing they are neither old enough nor sick enough to need palliative care. These findings emphasize the critical role primary care physicians play in advocating for low-income patients and the necessity for culturally sensitive education about palliative care. Promoting knowledge and understanding of palliative care among both primary care physicians and consumers is critical to ensuring access to care.
Objectives
Access to early palliative care (EPC) for all patients with metastatic lung cancer is yet to be achieved in spite of recommendations. This quality improvement (QI) project was initialized to improve the rates of such referrals from the thoracic oncology clinic for all new outpatients in a premier cancer center in India.
Materials and Methods
Change in the proportion of patients receiving referrals for EPC during and after intervention (April–May 2018), compared to baseline (January–March 2018) were explored. Interventions included understanding of the process flow, identification of key drivers, and root cause analysis which identified the gaps as lack of documentation for EPC. Teaching and encouraging staff at the clinic to incorporate referrals into all initial visits for patients with metastatic lung cancer were incorporated.
Results
The bundle of QI interventions increased referrals from an average of 50% to 75%, mean difference = 12.64 (standard deviation = 10.13) (95% confidence interval = 22.01–3.29), P = 0.016 (two-tailed) on paired sample test.
Conclusion
Improved referral rates for EPC in a multidisciplinary cancer clinic is possible with a QI project. This project also identifies the importance of data documentation and patient information processes that can be targeted for improvement.
With the advancements in treatments for previously terminal conditions, more Americans are now living with chronic serious illnesses for longer periods of time. Not only are there often associated symptoms of the disease itself, but often treatments for these chronic disease states have significant and debilitating side effects. Palliative medicine and hospice are subspecialties that focus on management of pain, symptoms, and stress for those living with a serious chronic disease. Both provide an interdisciplinary focus and a layer of support for patients and their families. Despite the rise in the availability of palliative medicine and hospice, many communities remain disproportionately underserved. There are many challenges for community-based palliative care programs including financial, staffing, ethical, and mental health issues. However, despite these challenges, there are opportunities for growth. As the healthcare entities move to a more patient-centered healthcare delivery system tied across the community, community-based palliative care programs are well positioned to bridge across the continuum of care settings and deliver a person-centered interprofessional approach to people dealing with serious illnesses and conditions.
Background
Palliative care is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of palliative care.
Aim
To describe community understandings of and attitudes to palliative care and explore characteristics significantly associated with favourable attitudes towards palliative care.
Design
Cross-sectional survey data were collected including several sociodemographic characteristics, knowledge of palliative care and attitudes to palliative care. Correlational analyses identified factors related to positive attitudes to palliative care. Those of significance ( p ⩽ 0.01) were examined using a multiple regression model to determine their predictive value.
Setting/participants
A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results
A total of 421 participants (75% female, mean age: 51 ± 15.1) reported a median of at least three misperceptions of palliative care. Older age, previously undertaking a caregiving role, knowing someone who had received palliative care and reporting more accurate knowledge of palliative care significantly predicted favourable attitudes to palliative care (adjusted R ² = 0.24, F(8, 333) = 13.2, p < 0.001). Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive.
Conclusion
Gaps in knowledge about palliative care exist in community, which may limit citizen’s potential access to quality care in the event of serious illness. These results point to a role for public education programmes, which may, in turn, also shift attitudes to palliative care.
Background and purpose:
The aim of this literature review is to explore barriers and potential solutions related to hospice (HC) and palliative care (PC) services among rural residents. Although the healthcare system is continually advancing, healthcare providers may not be optimizing HC and PC referrals for the growing rural population who underutilize these services. Suggested methods to close the utilization gap between HC and PC services among rural patients appear feasible, but universal effectiveness cannot be determined.
Methods:
An integrative literature review was conducted to evaluate diverse sources of literature. An electronic literature search was carried out using databases MEDLINE, CINAHL, Cochrane, PsycINFO, and Pubmed. The search was limited to English only, full text, peer reviewed, and published between 2010 and 2016. Search terms included rural, hospice, palliative, care access, and barriers.
Conclusion:
There are several barriers that interrelate to decreased utilization of PC and HC for rural populations and there are many options for overcoming them to equalize care.
Implications for practice:
Although advances to the general healthcare system are expediently rising, the rural patient population seems to fall short of these important life-changing services, especially in the realm of PC/HC. Beginning in primary care, this patient population can be affected and included in a positive manner.
Background:
Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers.
Aim:
To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings.
Design:
Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework.
Setting/participants:
Purposively sampled, English-speaking, adult patients with advanced cancer ( n?=?30) and their nominated family caregivers ( n?=?25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia.
Results:
Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired.
Conclusion:
While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.
Objectives:
To assess perceptions of illness severity and terminality in caregivers of advanced heart failure (HF) patients and how these perceptions influence utilization of palliative care and end-of life services.
Background:
HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality.
Methods:
This study was conducted using a qualitative design with in-depth interviews and content analysis.
Results:
Most caregivers did not understand the severity of HF (68%) or disease terminality (67%). Patients were more likely to receive services when their caregivers expressed an understanding of illness severity and/or terminality.
Conclusions:
Inclusion of caregivers in discussions of goals of care, advance care planning, and palliative care and end-of-life services with patients and providers is imperative.
Background:
No systematic meta-analysis is available on the prevalence of cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received.
Aim:
To examine the prevalence of advanced/terminal cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received.
Design:
Systematic review and meta-analysis.
Methods:
MEDLINE, Embase, The Cochrane Library, CINAHL, and PsycINFO were systematically searched on accurate prognostic awareness in adult patients with advanced/terminal cancer (1990-2014). Pooled prevalences were calculated for accurate prognostic awareness by a random-effects model. Differences in weighted estimates of accurate prognostic awareness were compared by meta-regression.
Results:
In total, 34 articles were retrieved for systematic review and meta-analysis. At best, only about half of advanced/terminal cancer patients accurately understood their prognosis (49.1%; 95% confidence interval: 42.7%-55.5%; range: 5.4%-85.7%). Accurate prognostic awareness was independent of service received and publication year, but highest in Australia, followed by East Asia, North America, and southern Europe and the United Kingdom (67.7%, 60.7%, 52.8%, and 36.0%, respectively; p = 0.019). Accurate prognostic awareness was higher by clinician assessment than by patient report (63.2% vs 44.5%, p < 0.001).
Conclusion:
Less than half of advanced/terminal cancer patients accurately understood their prognosis, with significant variations by region and assessment method. Healthcare professionals should thoroughly assess advanced/terminal cancer patients' preferences for prognostic information and engage them in prognostic discussion early in the cancer trajectory, thus facilitating their accurate prognostic awareness and the quality of end-of-life care decision-making.
The aim of this study was to explore the perspectives of health care professionals (HCPs) on the transition of heart failure (HF) patients to a palliative care approach.
Qualitative data were generated from 24 HCPs specializing in cardiology, care for the elderly, and palliative care. Data were analyzed using the principles of thematic analysis.
Emergent themes related to the unpredictable trajectory of HF, causing prognostic ambiguity; the use of structured pathways in end-of-life decision making; and comparison of HF and cancer patients in terms of their requirements and access to high-quality palliative care.
There is a need for both established prognostic guidelines and further education to develop the communication skills to facilitate end-of-life discussions with HF patients.
Palliative care is becoming fundamental in the starting line-up of care choices.
To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers.
A case review of 70 patients with a diagnosis of PMBT who received palliative care in five specialist palliative care units between July 2005 and June 2006. The review examined patients' symptom experience, care issues, access to rehabilitation and access to supportive care services.
The two most significant issues experienced by patients and identified in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however, 18% of carers accessed bereavement counselling services following the death of the person they cared for.
The needs of carers were not found to be routinely documented within the case notes. For some patients, referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.
Involvement in a hospice program is important because it may allow individuals with dementia to delay or prevent institutionalization as well as provide psychosocial support for their families. Once used mostly by patients with a terminal cancer, now more than one half of the hospice patients have diagnoses other than cancer. Yet hospice is still underused for individuals dying with advanced dementia. We conducted a pilot study of hospice agencies to determine barriers and characteristics of dementia hospice enrollment. Using a mailed questionnaire and interview, we looked at demographics, accessibility, training, referral sources, and marketing. Our analysis divided the agencies based on dementia census and availability to non-Medicare eligible individuals. Results showed hospices having Bridge and Transition programs had on average 4 times higher Alzheimer's disease (AD) and dementia census than hospices without these programs. The highest rated barriers to hospice use for individuals with dementia were prognosis, education, and finance.
The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.
This project explored end-of-life care preferences and barriers among low-income, urban African Americans and Latino/Hispanic Americans (Latinos) to uncover factors that may influence hospice utilization.
Focus groups were conducted separately for African Americans (4 groups, n = 26) and Latinos (4 groups, n = 27). Transcripts were coded and analyzed using consensus and triangulation to identify primary themes.
Four preference themes and four barriers were identified. Results were largely similar across the two groups. Both preferred having families provide care for loved ones but expressed desire to reduce caretaker burden. Groups emphasized spirituality as the primary means of coping and valued the holistic well-being of the patient and family. Barriers reported were closely tied to access to care. Participants reported low hospice utilization because of lack of awareness of hospice and the prohibitive cost of health care. Latinos were more likely to report language barriers, while African Americans were more likely to report mistrust of the system.
African Americans and Latinos in this study were highly receptive to end-of-life care that would provide relief for patients and caregivers and emphasize spirituality and family consensus. Improving awareness of hospice services would likely increase utilization.
In the last 40 years, palliative care has become the standard of care at the end of life. However, there are limited data about the degree of access to such care at the population level.
Using administrative databases, a care-oriented profile score was created to describe the care received during the last 6 months of life for 2,291 women who were dying of breast cancer in the province of Quebec, Canada, during the years 1992 to 1998. The care received was described through indicators of care that would reflect a palliative care philosophy. An ordinal score was developed for comparisons among age groups of women using a proportional odds ordinal regression model.
We found that only 6.9% of women died at home, while 69.6% of them died in acute care beds. While most women (75%) had few indicators indicating provision of palliative care during the last 6 months of life, younger women (< 50 years) were even less likely (odds ratio, 0.70; 95% CI, 0.54 to 0.90) to receive such care compared with middle aged women (50 to 59 years; serving as the reference group), while older women (> 70 years) were more likely (odds ratio, 1.85; 95% CI, 1.49 to 2.29).
Our study indicates that a sizeable proportion of women terminally ill from breast cancer do not have access to palliative care-an issue that health care policy makers may wish to explore further.
To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings.
Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997-October 2003) was also hand-searched.
Systematic search for studies, reports and policy papers written in English.
Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale.
The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people.
There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.
To describe the characteristics of Western Australian (WA) people who received, and did not receive, specialist palliative care (SPC) during their last 12 months of life.
Retrospective cohort study.
People who died between 1 July 2000 and 31 December 2002 in WA, and whose cause of death was from cancer or selected non-cancer conditions.
Use of SPC in the last 12 months of life.
There were 27,971 deaths from all causes in WA over the study period. Two-thirds (68%) of people who died of cancer received SPC, but less than one in ten (8%) who died of selected non-cancer conditions received SPC. Those who died of cancer were significantly less likely to receive SPC if they were single or widowed, aged > 85 years or lived in a region other than a major city. Of those who died of selected noncancer conditions, people other than those who were married were significantly less likely to have accessed SPC. Indigenous people were less likely to have accessed SPC, although this was not statistically significant (OR = 0.70, 95% CI: 0.36-1.34).
Within a WA context, this study confirms established international evidence for problems of access to SPC by non-cancer patients and other disadvantaged groups. Importantly, this evidence is provided at a population level, thus documenting the extent of inequities in palliative care service provision. By pointing to the areas of most critical need, this study assists in health service policy and planning.
Continuity of care is concerned with the quality of care over time. There are two important perspectives on this. Traditionally, continuity of care is idealized in the patient's experience of a 'continuous caring relationship' with an identified health care professional. For providers in vertically integrated systems of care, the contrasting ideal is the delivery of a 'seamless service' through integration, coordination and the sharing of information between different providers. As patients' health care needs can now only rarely be met by a single professional, multidimensional models of continuity have had to be developed to accommodate the possibility of achieving both ideals simultaneously. Continuity of care may, therefore, be viewed from the perspective of either patient or provider.
Continuity in the experience of care relates conceptually to patients' satisfaction with both the interpersonal aspects of care and the coordination of that care. Experienced continuity may be valued in its own right. In contrast, continuity in the delivery of care cannot be evaluated solely through patients' experiences, and is related to important aspects of services such as 'case-management' and 'multidisciplinary team working'. From a provider perspective, the focus is on new models of service delivery and improved patient outcomes. A full consideration of continuity of care should therefore cover both of these distinct perspectives, exploring how these come together to enhance the patient-centredness of care.
Many barriers, including being uninsured or having less than comprehensive health insurance coverage, reduce access to palliative and end-of-life care by inner city minorities. Medicaid or Medicare coverage alone can limit options for pain and symptom management, especially when late referrals make it more difficult to achieve symptom control. Patient affiliation with a religion could offset perceived difficulties with pain medication as well as negative pain and symptom attitudes. Data were analyzed from the most recent assessments of 146 African Americans and Latinos enrolled in an outpatient palliative care unit of an inner city hospital. Fifty-seven percent were receiving palliative care for cancer. Compared with other patients, patients with a religious affiliation did not differ regarding pain medication stress. Uninsured patients with a religious affiliation reported more hopeful pain and symptom attitudes, while patients with a religious affiliation covered only by Medicaid reported less hopeful pain and symptom attitudes. More hopeful pain and symptom attitudes by religious-affiliated, uninsured patients may reveal adequate coping, yet also conceal problem domains. Conversely, less hopeful attitudes by religious-affiliated patients covered only by Medicaid serve as clues to coping difficulties and problem domains. Palliative care programs should carefully consider how to integrate religious support networks as pipelines for program referrals and potential partners for care. Cancer 2007. (c) 2006 American Cancer Society.
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Background: Palliative care (PC) access is a critical component of quality cancer care. Previous studies on PC access have mostly examined the timing of PC referral. The proportion of patients who actually received PC is unclear. We determined the proportion of cancer patients who received PC at our comprehensive cancer center, and the predictors of PC referral. Methods: We reviewed the charts ofconsecutive patients with advanced cancer from the Houston region seen at MD Anderson Cancer Center and died between September 2009 and February 2010. We compared patients who received PC services with those who did not receive PC services before death using univariate and multivariate logistic regression. Results: A total of 366/816 (45%) decedents had a PC consultation. The median interval between PC consultation and death was 1.4 months (interquartile range (0.5-4.2) and the median number of medical team encounters before PC was 20 (6-45). In multivariate analysis, older age, being married, and specific cancer types (gynecology, lung and head and neck) were significantly associated with a PC referral (Table). Patients with hematologic malignancies had significantly fewer PC referrals (33%), the longest interval between advanced cancer diagnosis and PC consultation (median 16 months), the shortest interval between PC consultation and death (median 0.4 month), and one of the largest number of medical team encounters (median 38) before PC. Conclusions: We found that a majority of cancer patients at our cancer center did not access PC before they die. PC referral occurs late in the disease process with many missed opportunities for referral. Further effort is needed to improve quality of end-of-life care. [Table: see text]
Background:
Palliative care (PC) is a critical component of comprehensive cancer care. Previous studies on PC access have mostly examined the timing of PC referral. The proportion of patients who actually receive PC is unclear. We determined the proportion of cancer patients who received PC at our comprehensive cancer center and the predictors of PC referral.
Methods:
We reviewed the charts of consecutive patients with advanced cancer from the Houston region seen at MD Anderson Cancer Center who died between September 2009 and February 2010. We compared patients who received PC services with those who did not receive PC services before death.
Results:
In total, 366 of 816 (45%) decedents had a PC consultation. The median interval between PC consultation and death was 1.4 months (interquartile range, 0.5-4.2 months) and the median number of medical team encounters before PC was 20 (interquartile range, 6-45). On multivariate analysis, older age, being married, and specific cancer types (gynecologic, lung, and head and neck) were significantly associated with a PC referral. Patients with hematologic malignancies had significantly fewer PC referrals (33%), the longest interval between an advanced cancer diagnosis and PC consultation (median, 16 months), the shortest interval between PC consultation and death (median, 0.4 months), and one of the largest numbers of medical team encounters (median, 38) before PC.
Conclusions:
We found that a majority of cancer patients at our cancer center did not access PC before they died. PC referral occurs late in the disease process with many missed opportunities for referral.
Unlabelled:
Abstract Background: Cancer causes significant symptom burden and diminished quality of life. Despite the expansion of supportive and palliative care services (SPCS), little is known about rates of utilization and barriers to access to these services among oncology outpatients.
Methods:
We performed a cross-sectional survey in three outpatient medical oncology clinics. Patients with a diagnosis of breast, lung, or gastrointestinal (GI) cancer and a Karnofsky score of ≥60 were included. Patients reported their use of SPCS and any perceived barriers. Multivariable logistic regression was used to identify factors associated with SPCS use.
Results:
Among 313 participants, (50.5%) had not used SPCS since cancer diagnosis. The most common services used were nutrition (26.5%), psychiatric/psychological counseling (29.7%), and physical therapy (15.1%). Pain/palliative care and cancer rehabilitation consultations were used by 8.5% and 4.1% of participants, respectively. In multivariate analysis, graduate education was associated with greater SPCS use (adjusted odds ratio [AOR] 2.14, 95% confidence interval [CI] 1.08-4.26) compared with those with high school or less, whereas having lung cancer was associated with less SPCS use (AOR 0.48, 95% CI 0.24-0.96) when compared with those having breast cancer. The biggest reported barriers to using SPCS were a lack of awareness (22.4%) and lack of physician referral (23%).
Conclusions:
Approximately half of these patients had not accessed SPCS since cancer diagnosis and cite lack of awareness and physician nonreferral as barriers. Further research is needed to understand patients' needs and beliefs regarding SPCS, and how to integrate SPCS into conventional treatments to improve cancer care.
Purpose:
The purpose of this study was to identify socioeconomic, physician-related, and rural-urban factors that may influence the presence of a Medicare-certified hospice in three rural-urban areas.
Design:
This was secondary analysis of selected socioeconomic, physician-related, and rural-urban data from 3,140 counties using the 2005 Area Resource File, a county-level database. The county was the unit of analysis.
Methods:
Descriptive statistics were calculated for selected socioeconomic, physician, and rural-urban variables for the data set of 3,140 counties. Logistic regression was used to identify variables that influenced the presence of a Medicare-certified hospice across three rural-urban areas.
Findings:
As the rural-urban classification progressed from metropolitan (least rural) to rural-nonadjacent (most rural), the physician rate, racial-ethnic diversity, and number of counties with at least one Medicare-certified hospice decreased. However, in all three rural-urban areas only the physician rate was consistently significantly associated with the presence of a Medicare-certified hospice.
Conclusions:
Given the increasing numbers of patients and families who will be facing end-of-life care issues across the globe, access to hospice care is a significant end-of-life outcome. The most rural communities are least likely to have a Medicare-certified hospice. The higher the physician rate, the more likely a county is to have a Medicare-certified hospice. The Medicare Hospice Benefit's regulations requiring a physician's certification of terminal illness may be creating a barrier to hospice care, especially in rural communities. In this study, racial-ethnic diversity decreased as the rural-urban classification progressed from metropolitan (least rural) to rural-adjacent to metro to rural-nonadjacent (the most rural). The availability of Medicare-certified hospices in the metro and rural nonadjacent counties was influenced by the minority composition of the county. More research is needed on how the interaction of rurality, race-ethnicity, and physician access may affect access to hospice in rural communities.
Clinical relevance:
Increasing numbers of patients and their families across the globe will be facing end-of-life care. One of the most common barriers to end-of-life care in rural communities all over the world is physician availability. People living in rural communities with few physicians may experience less access to the comprehensive services of hospice than people living in metropolitan communities and therefore not realize important end-of-life outcomes such as symptom management, improved quality of life, financial support, and bereavement support.
To evaluate the attitudes, knowledge, and practices of US medical oncologists that are related to management of cancer pain.
An anonymous survey was mailed to a geographically representative sample of medical oncologists randomly selected from the American Medical Association's Physician Master File.
From a total of 2,000 oncologists, 354 responded to the original questionnaire and 256 responded to one of two subsequent shortened versions (overall response rate, 32%). Responders were demographically similar to all US medical oncologists. Using numeric rating scales of 0 to 10, oncologists rated their specialty highly for the ability to manage cancer pain (median, 7; interquartile range [IQR], 6 to 8) but rated their peers as more conservative prescribers than themselves (median, 3; IQR, 2 to 5). The quality of pain management training during medical school and residency was rated as 3 (IQR, 1 to 5) and 5 (IQR, 3 to 7), respectively. The most important barriers to pain management were poor assessment (median, 6; IQR, 4 to 7) and patient reluctance to take opioids (median, 6; IQR, 5 to 7) or report pain (median, 6; IQR, 4 to 7). Other barriers included physician reluctance to prescribe opioids (median, 5; IQR, 3 to 7) and perceived excessive regulation (median, 4; IQR, 2 to 7). In response to two vignettes describing challenging clinical scenarios, 60% and 87%, respectively, endorsed treatment decisions that would be considered unacceptable by pain specialists. Frequent referrals to pain or palliative care specialists were reported by only 14% and 16%, respectively.
These data suggest that, for more than 20 years, a focus on cancer pain has not adequately addressed the perception of treatment barriers or limitations in pain-related knowledge and practice within the oncology community. Additional efforts are needed to achieve meaningful progress.
Although the largest minority population in the United States, Hispanics are under-represented in hospice at the national level. The study purpose was to document Hispanic access to hospice services in an environment where Hispanics are a majority population. The framework for the study was Aday and Anderson's model for access to medical care. In this framework, access is not defined as availability of services and resources, but whether services are actually used by the people who need them. We completed retrospective chart reviews of 500 Medicare beneficiaries who died in four hospices. Study variables were decedent characteristics and access to hospice and hospice disciplines. Results showed that Hispanics and whites differed on characteristics known to influence access to health services, e.g., preferred language and type of caregiver Although the proportion of Hispanic elders dying in hospice was less than the proportion living in the community, the proportions of Hispanic elders who died in the community or died in their homes were not differentfrom the proportion that died in hospice. When access to hospice disciplines was compared between Hispanic and white decendents, the results showed one difference-more whites than Hispanics had access to volunteer services. Overall, the study showed that Hispanics were not underrepresented in hospice, and they had equal access to hospice disciplines. These findings differ from national data and may be associated with Hispanics being the majority population in the community. To learn how population dominance influences minority access to services, Hispanic access to hospice could be studied in locales with varying proportions of Hispanics in the population.
Access to palliative care (PC) is a major need worldwide. Using hospital charts of all patients who died over one year (April 2008-March 2009) in two mid-sized hospitals of a large Canadian city, similar in size and function and operated by the same administrative group, this study examined which patients who could benefit from PC services actually received these services and which ones did not, and compared their care characteristics.
A significantly lower proportion (29%) of patients dying in hospital 2 (without a PC unit and reliant on a visiting PC team) was referred to PC services as compared to in hospital 1 (with a PC unit; 68%). This lower referral likelihood was found for all patient groups, even among cancer patients, and remained after controlling for patient mix. Referral was strongly associated with having cancer and younger age.
Referral to PC thus seems to depend, at least in part, on the coincidence of being admitted to the right hospital. This finding suggests that establishing PC units or a team of committed PC providers in every hospital could increase referral rates and equity of access to PC services. The relatively lower access for older and non-cancer patients and technology use in hospital PC services require further attention.
Although palliative care consultation is recommended early in the course of oncology treatment, little evidence exists to guide the nature of this intervention. We describe a clinical practice of early palliative care consultation that improved quality of life, mood, and survival in a randomized clinical trial.
As part of a randomized trial of early palliative care versus standard care in patients with newly diagnosed metastatic non-small cell lung cancer (NSCLC), we analyzed documentation of the components of the initial palliative care consultation, self-reported quality of life as measured by the Functional Assessment of Cancer Therapy-Lung Trial Outcome Index (FACT-L TOI), and mood as measured by the Patient Health Questionnaire-9 (PHQ-9).
Seven palliative care clinicians provided consultation to 67 patients. The median total time spent with patients for the initial visit was 55 minutes (range, 20-120). Consultations focused on symptom management (median, 20 minutes; range, 0-75), patient and family coping (median, 15 minutes; range, 0-78), and illness understanding and education (median, 10 minutes; range, 0-35). Lower quality of life as measured by the FACT-L TOI predicted greater consultation time (odds ratio [OR] 0.95, 95% confidence interval [CI] 0.91-0.99). Additionally, lower quality of life scores on the FACT-L TOI (OR = 0.93, 95% CI = 0.88-0.97) and higher depression scores on the PHQ-9 (OR = 1.15, 95% CI = 1.02-1.31) predicted greater time spent on symptom management.
Initial palliative care consultation near the time of diagnosis in patients with metastatic NSCLC in this intervention is nearly an hour in length and largely addresses symptom management, patient and family coping, and illness understanding and education. Lower quality of life predicted longer consultations, with more time dedicated specifically to symptom management.
Primary brain tumours account for less than 2% of cancer diagnoses in the UK but more people under 40 die from a brain tumour than from any other cancer. Despite developments in some treatment options, survival remains poor and patients suffer with considerable functional and cognitive deficits. Rehabilitation for patients with primary brain tumours produces statistically and clinically significant improvements in function. When compared, similar functional gains are made following rehabilitation for brain tumour patients and for those following stroke and traumatic brain injury. There have been very few studies looking at access to rehabilitation for this group of patients as a primary objective. However, existing studies and clinical experience suggest that patients with brain tumours do not access rehabilitation services frequently or easily, either locally or nationally. Therefore, this qualitative study addressed the reasons for this through semi-structured interviews of healthcare professionals, investigating their experiences of rehabilitation for this patient group and describing commonly identified barriers under key themes. The interviews gauged the views of eight healthcare professionals representing three professions in different settings, including hospital and community based. The resultant barriers fell under the following themes: professional knowledge and behaviours; services and systems; and the disease and its effects. Suggested solutions were wide ranging and included education, multidisciplinary meetings and specialist clinicians to co-ordinate care. The barriers to accessing rehabilitation for this group of patients are complex, but some of the solutions could be reached through education and co-ordination of services. Further research into the benefits of, and access to, rehabilitation for this group of patients is essential to ensure that patients with brain tumours are given opportunity to gain from the benefits of rehabilitation in the same way as other diagnoses, both cancer and non-cancer.
Doctors in Australia play an important role in facilitating access to specialist palliative care (SPC) services for people with advanced cancer. This study aimed to describe doctors' perceptions of barriers to referring patients for SPC, and to identify triggers and facilitators for referral.
Forty semistructured telephone interviews were conducted with doctors involved in the care of people with advanced cancer from a variety of settings.
Six themes were identified: disease and treatment; psychosocial; communication and interpersonal issues; health services issues; timing; and, health professionals' skills. All doctors considered the presence and complexity of physical symptoms, stage of the disease and treatment orientation as important in decisions to refer for SPC. Less important were the psychosocial well-being and cultural characteristics of the person with cancer and their family. Factors reportedly affecting referral and access included health professionals' ability to communicate openly and honestly about disease progression, availability and location of SPC resources and doctors' expertise. Divergent views were expressed about appropriate timing for access. The predominant view that SPC is for management of physical symptoms may result in nonreferral of those who have complex problems without physical symptoms.
Given the complex relationship between psychological and physical well-being and health-related quality of life, it is important that all factors contributing to patient well-being are identified. Routine use of objective measures of unmet and complex needs may help identify people who are likely to most benefit from SPC and optimize access, regardless of timing, stage of disease, and treatment orientation.
Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.
There are no nationally agreed criteria for admission to specialist palliative day care (SPDC). Previous work has called for future research to qualitatively examine why health and social professionals make referrals to day care. Therefore the current study aims to address this question using semistructured interviews to gain first hand accounts of referrers' reasons for making referrals to SPDC.
The reasons for referral to SPDC of eight professionals were explored using semistructured interviews. An exploratory methodology (interpretative phenomenological analysis [IPA]) was used to analyze the data to allow for an in-depth investigation.
Six main themes were apparent with regard to referring a patient to SPDC: physical, social and psychological well-being, continuity of care, introduction to the hospice environment, and caregiver respite.
This study provides an insight into reasons for referral to SPDC. Referrers value the multiprofessional team, the holistic approach to care as useful to managing difficult, complex, and persistent problems in patients wishing to be cared for in the community. Additional benefits include a helpful introduction to hospice services and much needed regular respite for caregivers. Future research into patient and professional perceptions of the process of referral to SPDC could be useful. Expansion of the current study could contribute to the development of a standardized referral tool to be used in conjunction with referrers' clinical judgment.
Hospital-based palliative care consultative teams assist with decision-making, symptom management, patient and family support, and discharge planning for those with advanced illness. However, there is evidence to suggest that many patients dying within acute hospitals receive no specialist palliative care input. This project aimed to assess care provided to patients dying within a large Australian hospital and to understand senior clinician decision-making around referral to palliative care.
A multi-methods approach was taken that incorporated a literature review, a retrospective chart-audit using the Liverpool Care Pathway to assess quality of end-of-life care, and semistructured interviews with clinicians.
The audit demonstrated wide variation in referral practices from clinical units, with overall only 42% of dying patients referred. A number of deficiencies in the care of dying patients within the hospital were evident; however, referral for palliative care consultation was associated with improvements in availability of appropriate end-of-life medication orders, communication with patients and families, and cessation of futile treatment and interventions. Eight themes emerged from the interviews with clinicians, including uncertainty as to the role of palliative care and a discrepancy between medical and nursing views of the utility and timing for palliative care.
The findings demonstrate both the need for more frequent and/or earlier referral of dying patients and the need for generalist staff to become more skilled in the delivery of palliative care. It also highlights the need for palliative care clinicians to be educators and advocates within services to enhance care at end-of-life.
Patients in the palliative care setting have a number of concerns not necessarily connected to their medical problems, such as spiritual and relationship issues. When these problems are not properly assessed and addressed, they may become a significant source of distress for patients and families. The aims of the present study were to assess the concerns of patients attending a palliative care clinic, to examine physicians' ratings of patient concerns, to access the concordance between patients' and physicians' ratings, and to assess the association between patients' concerns and their level of distress.
We evaluated 137 patients attending a symptom control and palliative care clinic. Patients completed the Concerns Checklist, Hospital Anxiety and Depression Scale, and Cancer Behavior Inventory at the beginning of their visit. The Concerns Checklist was completed by the patient's clinic physician immediately after the visit and was used to estimate how accurate the physician was in identifying patients' concerns. We examined the correlation between the total number of patient concerns and their levels of anxiety, mood disturbance, and self-efficacy.
Patients were most concerned about loss of function, the future, and caring for themselves. Concordance between physician and patient rating of concerns was poor (all kappas, 0.26 or lower). Higher levels of patient concerns were associated with greater anxiety (r = 0.52) and depressive symptoms (r = 0.40) and lower self-efficacy (r = -0.37).
There was generally poor concordance between patients reporting of their concerns and physicians reporting of the patients' concerns. In addition, patients' with more concerns also had higher levels of anxiety and depressive symptoms. Thus, it is important to find strategies to more accurately identify patients' concerns, so that they can be adequately addressed.
Patients with chronic obstructive pulmonary disease report a symptom burden similar in magnitude to terminal cancer patients yet service provision and access has been reported as poor. In the absence of a specific national chronic obstructive pulmonary disease service framework the gold standards framework might support service developments. We surveyed 239 UK acute hospital units admitting chronic obstructive pulmonary disease patients, comprising 98% of all acute trusts, about their current and planned provision for palliative care services. Only 49% of units had a formal referral pathway for palliative care and only 13% had a policy of initiating end-of-life discussions with appropriate patients. Whilst 66% of units had plans to develop palliative care services, when mapped against the gold standards framework few were directly relevant and only three of the seven key standards were covered to any significant degree. We conclude that service provision remains poor and access is hindered by a lack of proactive initiation of discussion. Planned developments in chronic obstructive pulmonary disease palliative care services also lack a strategic framework that risks holistic design.
People with advanced cancer who may benefit from specialised palliative care (SPC) do not necessarily access such services.
To obtain a deeper understanding of issues affecting access to SPC, five focus groups were undertaken with nurses (35), physicians (three), allied health professionals (seven) and an academic involved in providing care.
Thematic analysis revealed that palliative care providers consistently view palliative care as a broad holistic approach to care benchmarked on good symptom management. Whilst participants themselves perceived SPC as aiming to maximise the quality of life of the patient and family across all domains of care, they perceived that some health professionals and community members viewed palliative care largely as symptom control and terminal care for access after all disease-modifying treatment has been exhausted. Concern was expressed that such misconceptions were an important barrier to timely SPC. Participants did not nominate a time or particular milestone in the disease process which should prompt referral and suggested that SPC be available at any time where needs are complex and/or are not being met.
Failure to properly recognise and understand the breadth of care provided within the palliative care framework may result in people with advanced cancer and their caregivers not accessing SPC services or accessing them too late to receive maximum benefit. Education may be required to promote the holistic nature of SPC services amongst health professionals and the community and to help realise the potential benefits to patients, families and health professionals resulting from timely access to SPC services.
When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.
A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of "security" was used as an analytic lens to facilitate conceptual development and exploration.
Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.
The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.
Background:
: Palliative care has been progressively adopted by American cancer centers; however, referrals to palliative care continue to occur late in the trajectory of illness. It was hypothesized that the perceived association between the name palliative care and hospice was a barrier to early patients' referral. The objectives of this study were to determine the perception of the impact of the name palliative care compared with supportive care on patient referral and to determine whether there was an association between demographic factors and the perceptions of the 2 names by medical oncologists and their midlevel providers (advance practice nurses and physician assistants) at a comprehensive cancer center.
Methods:
: A survey was conducted among a random sample of 100 medical oncologists and 100 midlevel providers from The University of Texas M. D. Anderson Cancer Center. Information was collected on demographics, previous experience in palliative care, and attitudes and beliefs toward the impact of the name palliative care compared with supportive care on patient referral.
Results:
: A total of 140 of 200 (70%) participants responded (74 midlevel providers and 66 medical oncologists). Median age was 43 years (range, 34.5-50 years), and there were 83 (60%) women. Midlevel providers and medical oncologists generally agreed in their responses to most of the items. More participants preferred the name supportive care (80, 57%) compared with palliative care (27, 19% P < .0001). Medical oncologists and midlevel providers stated increased likelihood to refer patients on active primary (79 vs 45%, P < .0001) and advanced cancer (89 vs 69%, P < .0001) treatments to a service named supportive care. The name palliative care compared with supportive care was perceived more frequently by medical oncologists and midlevel providers as a barrier to referral (23 vs 6% P < .0001), decreasing hope (44 vs 11% P < .0001), and causing distress (33 vs 3% P < .0001) in patients and families. There were no significant associations among the perception of the 2 names and age (P = .82), sex (P = .35), or prior training in palliative care (P > .99).
Conclusions:
: The name palliative care was perceived by medical oncologists and midlevel providers as more distressing and reducing hope to patients and families. Medical oncologists and midlevel providers significantly prefer the name supportive care and stated more likelihood to refer patients on active primary and advanced cancer treatments to a service named supportive care. Cancer 2009. (c) 2009 American Cancer Society.
National data document that Hispanics are under-represented in hospice. Policy makers often attribute the under-representation to Hispanics' cultural values and preferences, however, another reason may be healthcare system barriers encountered by Hispanics. We explored Hispanics' versus Whites' experiences in the healthcare system prior to hospice admission to help account for Hispanics under-representation in hospice. The conceptual model was the Agency for Healthcare Research and Quality Model on Healthcare Access. Whites' experiences were used as benchmarks to identify healthcare disparities for Hispanics. In four hospice agencies, Hispanic (n = 60) and White (n = 60) Medicare patients were interviewed. The results showed that prior to hospice admission, Hispanics had less access to health services known to be associated with hospice access.
The process of dying for many Australians is not ideal. To improve the care of the dying in our community, the barriers preventing optimal care must be identified. Forty-two important barriers were identified by focus groups. Health care professionals (HCPs) working in palliative care (PC) throughout Queensland were asked to rate the importance of each of the barriers. Inadequate funding for PC, lack of after-hours care, insufficient medical support and the lack of HCPs in PC across several different settings were highlighted as the most important barriers. Uncertainty regarding death certification, society's difficulty in responding to cultural needs, patient fears that active treatment would be stopped and fear of palliative care were considered the least important barriers. Many HCPs seem concerned about issues they are less likely to influence. The results of this survey may be useful for future workforce planning.
Assessment of pain in sickle cell disease is briefly described and a case of a 32-year-old Nigerian woman who had sickle cell pain is presented. The management and outcomes of her care in the UK are described and commentaries are presented on this case of sickle cell pain by specialists from Spain and The Netherlands.
Underutilization of hospice care continues to be a public health issue in the United States. Physician barriers related to incorrect knowledge and unfavorable attitudes have been hypothesized as part of the explanation. We conducted a mail survey of 264 area physicians, obtaining a response rate of 72% (n = 190). The survey examined attitudes toward, knowledge about, and perceptions of benefits and barriers to hospice care. Physicians demonstrated very positive attitudes toward hospice. They had correct knowledge about some aspects of hospice, but were uncertain about correct answers on the majority of items. They had erroneous knowledge on few items. Physicians perceived many benefits to hospice care, and identified patient and family readiness as the major barriers to earlier hospice referrals. Demographic and practice variables were related to responses on few of the survey items. These findings have many implications for outreach strategies for physicians as well as future research.
The nation has an ample supply of hospice programs and, through Medicare, Medicaid, or employee-sponsored health insurance, most people have nearly full coverage for hospice care. Yet, less than one third of dying persons use hospice care. Little is known about what prevents physicians from referring to hospice care and how effective hospices are in reaching out to physicians to generate referrals.
In 1999, we conducted in-depth telephone interviews with 30 experts in hospice care across the country and made site visits to four different hospice programs.
The interviewees identified numerous barriers to accessing hospice care that are complex and often overlapping. Some barriers relate to physicians and other health care professionals, such as their difficulty accepting death and their lack of education in end-of-life care. Other barriers are the result of patient/family misinformation and aspects of the hospice system that limit the number and types of patients deemed appropriate for hospice care. Factors that facilitate hospice referrals (which we call enablers) are also numerous and include active efforts by hospices to educate and reach out to physicians and consumers, as well as physicians' practice styles.
The research provided powerful validation of trends that hospice and palliative care providers in the trenches have been describing anecdotally for several years. Ultimately, this information could be used to develop a toolkit for hospices and palliative care organizations to assist them with marketing and physician outreach.
Palliative care services provide secondary and tertiary levels of palliative
care, the interdisciplinary care of patients in which the goal is comfort
and quality of life. Primary palliative care refers to the basic skills and
competencies required of all physicians and other health care professionals.
Secondary palliative care refers to the specialist clinicians and organizations
that provide consultation and specialty care. Tertiary palliative care refers
to the academic medical centers where specialist knowledge for the most complex
cases is practiced, researched, and taught. The case of Reverend J, a man
with advanced cancer admitted to an acute palliative care unit in a teaching
hospital, illustrates the use of secondary and tertiary clinical palliative
care services in hospitals and health care systems.
To identify factors associated with hospice enrollment and length of stay in hospice among patients dying with lung or colorectal cancer.
We used the Linked Medicare-Tumor Registry Database to conduct a retrospective analysis of the last year of life among Medicare beneficiaries diagnosed with lung or colorectal cancer at age > or = 66 years between January 1, 1973, and December 31, 1996, in the Surveillance, Epidemiology, and End Results Program who died between January 1, 1988, and December 31, 1998. Our outcomes of interest were time from cancer diagnosis to hospice enrollment and length of stay in hospice care. We used Cox proportional hazards regression to adjust for demographic and clinical information.
We studied elderly patients dying with lung cancer (n = 62,117) or colorectal cancer (n = 57,260). Overall, 27% of patients (n = 16,750) with lung cancer and 20% of patients (n = 11,332) with colorectal cancer received hospice care before death. Median length of stay for hospice patients with lung and colorectal cancer was 25 and 28 days, respectively. Overall, 20% of patients entered hospice within 1 week of death, whereas 6% entered more than 6 months before death. Factors associated with later hospice enrollment include being male; being of nonwhite, nonblack race; having fee-for-service insurance; and residing in a rural community. Many of these factors also were associated with shorter stays in hospice.
Although use of hospice care has increased dramatically over time, specific patient groups, including men, patients residing in rural communities, and patients with fee-for-service insurance continue to experience delays in hospice enrollment.
Many proponents of hospice care believe that this service is underutilized.
To determine physicians' perceptions of hospice utilization and of their own hospice referral pattern; their perceived and actual knowledge of appropriate hospice referral diagnoses; and perceived barriers to hospice referral.
Surveys for anonymous response were distributed to 125 physicians in 2 internal medicine departments of a large not-for-profit health maintenance organization (HMO). Of these 125 physicians, 89% responded, including 91 staff physicians and 20 residents.
Of the 111 physician-respondents, 78% reported their belief that hospice care was underutilized; 84% were unable to identify appropriate hospice diagnoses; and 12% were aware of the "National Hospice Organization Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases." Difficulty of predicting death to within 6 months was cited by 37% as the foremost barrier to hospice referral. In addition, 28% expressed concern that patients or families would interpret hospice referral as a cost saving measure; 11% of respondents had been accused of using hospice referral for this purpose.
Our study-the first major survey of physician attitudes and practices regarding hospice utilization in an HMO setting-showed that barriers to hospice referral are similar to those in non-HMO settings; physicians have difficulty predicting life expectancy and lack knowledge of patient eligibility guidelines. Physician concern that patients or their family members would construe hospice referral as a cost-saving technique may be a barrier particularly troublesome in an HMO setting.
Background:
In the United States, as in most developed countries, death is rarely unexpected. It usually occurs in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms, improve the quality of their lives, and strive for a peaceful death. Professionals who serve dying patients need to recognize the importance of advance directives as part of a patient's decision to forgo curative treatment for palliative care.
Objectives:
SOLACE (Supporters of Life-Affirming Care at End of Life) is a coalition of interdisciplinary professionals in the northern Virginia community dedicated to improving end-of-life care. The objectives of the SOLACE survey were to identify and describe: 1) professionals' perceptions about barriers related to hospice and palliative care, 2) professionals' opinions about barriers related to dying at home, 3) professionals' perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care.
Methods:
From several consultations with hospice experts, a survey questionnaire was developed to solicit responses from professionals on palliative care, dying at home, and advance directives. Measures that assessed obstacles to palliative care were modified from previous studies to yield composite barrier scores. From a sample of a variety of participants at a national conference on palliative care (n = 200), 101 subjects returned questionnaires (51 percent) yielding 100 usable completed forms from attendees who demonstrated an interest in palliative care and, in some cases, a high level of personal or professional experience. Survey results were analyzed on respondents' perceptions concerning barriers related to advance directives and the delivery of palliative care.
Results:
Of the 13 obstacle statements, results show that respondents rated the top three barriers as 1) physician reluctance to make referrals (mean = 4.23), 2) physician lack of familiarity with availability and suitability of hospice (mean = 3.93), and 3) association of hospice with death (mean = 3.93). There was a statistically significant difference in scores for respondents from hospitals and respondents from hospices on their assessment of barriers for the association of hospice with death (t = -2.09, p < .05) and the lack of information about the severity of or irreversibility of the patients illness (t = -2.78, p < .01).
Patients typically receive hospice care only in the last days or weeks of life, and there is widespread agreement among experts that patients enroll in hospice too late. However, it is not known whether patients and their families believe that they are enrolling in hospice too late.
Prospective interview study.
Not-for-profit, Medicare-certified hospice.
Patients and families recruited at consecutive hospice enrollment visits.
Interviews at the time of hospice enrollment and 1 month after death or discharge from hospice assessed patients' and families' perceptions of the timing of hospice enrollment ("too soon," "too late," "at about the right time").
Interviews were conducted at 274 enrollment visits. Very few patients (1/85; 1%) and family members (12/261; 5%) said that they believed they were enrolling in hospice too late. In follow-up interviews with families after the patient's death or discharge, families were more likely to believe that enrollment was too late (n = 38/218; 17%; sign test p < .001). Families who believed they had enrolled too late had shorter lengths of stay in hospice compared to those who said that enrollment was too soon or at the right time (median 10 vs. 24 days; rank-sum test p < 0.001).
Despite late enrollment in hospice and very short lengths of stay, most patients and families believe that they are enrolling in hospice at the right time.
Despite growing research in the UK suggesting that patients from black and ethnic minority groups feel that they do not always receive the best treatment and care, little is known about how care professionals themselves respond to working with this group. The study, involving focus groups with health and social care staff, was undertaken to learn about their views and experiences. The principal finding was the extent to which staff experience difficulties in caring for patients from black and ethnic minority groups. Entailing serious challenges to their own professional practice, these were found to arise at all stages of patients' experience of cancer, including at diagnosis, during treatment and at the palliative phase. Staff were concerned that their inability to communicate with some patients meant that they were not able to provide them a good service, as they could not develop an easy relationship and talk around issues. Yet it could be difficult to work with interpreters, as well as family members, both of who could be reluctant to translate important information. They were also conscious of not being fully sensitive to patients' differing cultures, while noting the importance of not making assumptions about particular beliefs or behaviour. Staff would welcome training to help them to explore their attitudes and assumptions in working with black and ethnic minority patients, but did not seek induction into the detailed practices of different cultures. Some staff felt they would benefit from training in working with interpreters.
Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.
To describe palliative care services as they exist in the hinterlands (towns away from regional centres) of Midwest New South Wales, including an estimation of the numbers of cases treated by local doctors, and the service they provide to their patients. Generalist doctors' attitudes to palliative care are also explored, as this information is lacking in the literature but is important for service provision.
Descriptive survey.
Rural primary care and district hospitals.
Generalist doctors in hinterland areas.
In total, 38% (19/50) of surveys were returned. "Visiting rights" to the district hospital were held by 78.9% of local doctors, and patients are admitted under the care of their own doctor for symptom control and terminal care, 94.1% and 76.5% of the time, respectively. All doctors surveyed perform home visits for terminally ill patients, and 68.4% make themselves routinely available after hours. Doctors surveyed estimated that they managed a mean of 8.4 deaths due to chronic illness in the past 12 months. Most (78.9%) said that they would continue to manage dying patients even if they had a choice, and they feel between moderately and very satisfied that they provide quality care. However, only 21.1% considered their undergraduate training in palliative medicine to be adequate, and all said that they would refer to a specialist service if it were available.
Generalist rural doctors not only treat many dying patients, but also provide a continuity of care that is rarely seen in other settings. Proposals of models for "rural" palliative care should, therefore, take this unique setting into account. One such suggestion is given in this article.
To determine whether patient preferences are a barrier to hospice enrollment.
Prospective cohort study.
Fifteen ambulatory primary care and specialty clinics and three general medicine inpatient units.
Two hundred three seriously ill patients with cancer (n=65, 32%), congestive heart failure (n=77, 38%), and chronic obstructive pulmonary disease (n=61, 30%) completed multiple interviews over a period of up to 24 months.
Preferences for high- and low-burden life-sustaining treatment and site of death and concern about being kept alive by machines.
Patients were more likely to enroll in hospice after interviews at which they said that they did not want low-burden treatment (3 patients enrolled/16 interviews at which patients did not want low-burden treatment vs 47 patients enrolled/841 interviews at which patients wanted low-burden treatment; relative risk (RR)=3.36, 95% confidence interval (CI)=1.17-9.66), as were interviews at which patients said they would not want high-burden treatment (5/28 vs 45/826; RR=3.28, 95% CI=1.14-7.62), although most patients whose preferences were consistent with hospice did not enroll before the next interview. In multivariable Cox regression models, patients with noncancer diagnoses who desired low-burden treatment (hazard ratio (HR)=0.46, 95% CI=0.33-0.68) were less likely to enroll in hospice, and those who were concerned that they would be kept alive by machines were more likely to enroll (HR=5.46, 95% CI=1.86-15.88), although in patients with cancer, neither preferences nor concerns about receiving excessive treatment were associated with hospice enrollment. Preference for site of death was not associated with hospice enrollment.
Overall, few patients had treatment preferences that would make them eligible for hospice, although even in patients whose preferences were consistent with hospice, few enrolled. Efforts to improve end-of-life care should offer alternatives to hospice that do not require patients to give up life-sustaining treatment, as well as interventions to improve communication about patients' preferences.
To examine whether African Americans are informed about hospice services, and to examine demographic or disease factors that may influence receipt of information about hospice.
Retrospective cohort