No full-text available
To read the full-text of this research,
you can request a copy directly from the author.
Quantity and Quality of Life: Duties of Care in Life-Limiting Illness
Abstract
Everyone dies. Dying today typically involves a period of protracted illness, disability, and intense involvement of medical professionals. Although the experience is woefully understudied, a significant body of evidence is emerging to guide clinicians, health systems, and society toward better practices for people facing serious, life-threatening conditions.That evidence has shown, importantly, that the amount of suffering that people endure in their last year of life is considerable. Singer et al1 recently reported on the experience of 7204 adults older than 50 years who died while being followed up as part of a longitudinal study of US health and retirement. The researchers found that, during their last year, 51% of study participants were often troubled by moderate to severe pain, and 46% to 53% also experienced at least a month of depression, periodic confusion, dyspnea, and incontinence during that time.1 Furthermore, among those who died between 1998 and 2010, none of these symptoms decreased in occurrence during their last year of life, but rather occurrence of pain, depression, and periodic confusion actually increased. Medical care for the symptoms people experience at the end of life does not seem to have gotten better; it may have gotten worse.
... Various studies also showed that the primary goal of the families and support groups is to maximize the quality of life for individuals with dementia and delay or avoid the move to any institutional care (Evans, 2017;Gawande, 2016). When a care plan is designed for individuals with dementia, their caregivers should also play a significant part, considering the sacrifices and mental challenges experienced by them. ...
... When a care plan is designed for individuals with dementia, their caregivers should also play a significant part, considering the sacrifices and mental challenges experienced by them. The burden of caring for individuals with dementia weighs heavily on the caregiver that 'caregiver-centered focus and interventions need to be planned out to ease patient's pain and alleviate caregiver burden (Gawande, 2016). ...
... The ALZ is an important proponent in ensuring the preservation of dignity and sanctity of individuals with dementia, providing valuable guidance for the patients, their caregivers, and family members. Researchers also show that the families and support groups' primary goal is to maximize the quality of life for individuals with dementia and delay or avoid moving to any institutional care (Evans, 2017;Gawande, 2016). The various literature reviewed identified one common theme: the desire by various governing bodies, researchers, and major stakeholders to ensure dignified care for individuals with dementia and preserve the sanctity of life, while identifying the best intervention strategies and care plans (ALZ, 2021). ...
While there has been ongoing optimism to find a cure, dementia is a disease that lacks awareness and understanding, causing stigmatization and barriers to diagnosis and providing care. Although there is abundant data on dementia and its effects in the current study, various organizations have adopted siloed and ambiguous dementia care approaches. Hence, the current research studied the extensive literature as preliminary work, followed by interviews with providers who had a multitude of experiences working with individuals with dementia and their families
... Gawande points to the historical examples of books called Ars Moriendi (Art of Dying; Shinners 1997) that were popular in medieval Europe as well as the Tibetan Book of the Dead and the Egyptian Book of the Dead that each provide cultural forms of instruction on how to accept the psychological aspects of dying. Gawande (2014Gawande ( , 2016 observes that the modern hospice movement provides psychological support at end of life through an interdisciplinary clinical team who are tasked with holistically addressing the biopsychosocial aspects of dying. ...
... Gawande points to the historical examples of books called Ars Moriendi (Art of Dying; Shinners 1997) that were popular in medieval Europe as well as the Tibetan Book of the Dead and the Egyptian Book of the Dead that each provide cultural forms of instruction on how to accept the psychological aspects of dying. Gawande (2014Gawande ( , 2016 observes that the modern hospice movement provides psychological support at end of life through an interdisciplinary clinical team who are tasked with holistically addressing the biopsychosocial aspects of dying. ...
... Such services both increase the quality of life and extend life in several terminal illnesses (Connor et al. 2007), contrary to impressions that hospice care reduces longevity (i.e., "giving up"). Despite their demonstrated value (for a review, see Connor et al. 2007), these services are chronically underutilized (Gawande 2016). The proliferation of hospice services resulted in the broader palliative care movement, a specialty focused on reducing suffering and improving well-being for patients with serious, chronic, or life-threatening illnesses or injuries in general (WHO 2011). ...
End of life and palliative care has improved in recent decades but the psychopharmacological options available to clinicians and patients in these contexts remain limited. In particular, psychological factors such as depression, existential distress, and well-being remain challenging to address with current medications. Here, we review recent research on the use of psychedelics in clinical settings with a particular focus on patients with life-threatening diagnoses. We propose that psychedelics may provide clinicians with an additional psychopharmacological treatment in the context of end of life and palliative care.
... Studies have shown that early enrollment in a hospice helps reduce aggressive care, improves patient quality of life, and improves the quality of end-of-life care [16][17][18][19]. Temel et al. reported early palliative care to be associated with lessaggressive end-of-life care among patients with metastatic lung cancer [20]. ...
... We defined specialized palliative care (SPC) as use of an outpatient palliative care clinic, inpatient palliative care team, or palliative care unit (PCU) [17,26,27]. On the basis of previous studies [2][3][4], we defined aggressive care as chemotherapy, ICU admission, resuscitation, ventilation, or feeding tube in the last month before death. ...
... Our results showed that patients who received SPC were less likely to receive chemotherapy at the EOL. As prior studies have reported, use of hospice and palliative care consultation are associated with less-aggressive care at the EOL [16][17][18][19][20][21][22][23][24][25]. Our results showed that among 53 patients who received SPC, 39 patients (73.6%) were admitted to the PCU. ...
Purpose
This study aimed to (1) describe characteristics of aggressive care at the end of life (EOL) and (2) identify factors associated with specialized palliative care use (SPC) and aggressive care at the EOL among Japanese patients with advanced cancer.
Methods
This single-center, follow-up cohort study involved patients with advanced cancer who received chemotherapy at Tohoku University Hospital. Patients were surveyed at enrollment, and we followed clinical events for 5 years from enrollment in the study. We performed multivariate logistic regression analysis to identify independent factors related to SPC use and chemotherapy in the last month before death.
Results
We analyzed a total of 135 patients enrolled between January 2015 and January 2016. No patients were admitted to the intensive care unit, and few received resuscitation or ventilation. We identified no factors significantly associated with SPC use. Meanwhile, younger age (20–59 years, odds ratio [OR] 4.10; 95% confidence interval [CI] 1.30–12.91; p = 0.02) and no receipt of SPC (OR 4.32; 95% CI 1.07–17.37; p = 0.04) were associated with chemotherapy in the last month before death.
Conclusion
Younger age and a lack of SPC were associated with chemotherapy at the EOL in patients with advanced cancer in Japan. These findings suggest that Japanese patients with advanced cancer may benefit from access to SPC.
... Studies have shown that early enrollment in a hospice helps reduce aggressive care, improves patient quality of life, and improves the quality of end-of-life care [14][15][16][17]. Temel et al. reported early palliative care to be associated with less-aggressive end-of-life care among patients with metastatic lung cancer [18]. ...
... Follow-up medical record review was used to identify the medical care patients received in the last month before death among those who died, including specialized palliative care (SPC), ICU admission, and use of chemotherapy, resuscitation, ventilation or feeding tube. SPC was de ned as use of an outpatient palliative care clinic, inpatient palliative care team, or palliative care unit (PCU) [15,[27][28]]. On the basis of previous studies [2,12,29], we de ned aggressive care as chemotherapy, ICU admission, resuscitation, ventilation, or feeding tube in the last month before death. ...
... Our results showed that patients who received SPC were less likely to receive chemotherapy at the EOL. As prior studies have reported, use of hospice and palliative care consultation are associated with lessaggressive care at the EOL [14][15][16][17][18][19][20][21][22][23]. Our results showed that among 53 patients who received SPC, 39 patients (73.6%) were admitted to the PCU. ...
Purpose:
This study aimed to identify factors associated with specialized palliative care (SPC) use and aggressive care at the end of life (EOL) among Japanese patients with advanced cancer.
Methods:
This single-center, follow-up cohort study involved patients with advanced cancer who received chemotherapy at Tohoku University Hospital. Patients were surveyed at enrollment, and we followed clinical events for 5 years from enrollment in the study. We performed multivariate logistic regression analysis to identify independent factors related to SPC use and chemotherapy in the last month before death.
Results:
We analyzed a total of 135 patients enrolled between January 2015 and January 2016. No patients were admitted to the intensive care unit, and few received resuscitation or ventilation. We identified no factors significantly associated with SPC use. Meanwhile, younger age (20–59 years, odds ratio [OR] 4.10; 95% confidence interval [CI] 1.30–12.91; p=0.02) and no receipt of SPC (OR 4.32; 95% CI 1.07–17.37; p=0.04) were associated with chemotherapy in the last month before death.
Conclusion:
Younger age and a lack of SPC were associated with chemotherapy at the EOL in patients with advanced cancer in Japan. These findings suggest that Japanese patients with advanced cancer may benefit from access to SPC.
... 2,6,[10][11][12][13][14][15][16][17][18][19][20] Conversations with physicians, colleagues, and patients reveal that a dichotomous way of talking about quality versus quantity of life (QvQ) underlies many goals of care discussions and impacts patient care. 10,16,[21][22][23][24][25][26][27][28][29][30][31][32][33] A majority of the literature on quality and quantity of life are studies of patient decision preferences in oncology, 25,28,[34][35][36] time trade-off utility studies, 37,38 and studies of patient preferences in end-of-life care. 24,31,39,40 Some literature comments on how medicine has, at times, pressed for quantity of life at the expense of quality of life. ...
... 24,31,39,40 Some literature comments on how medicine has, at times, pressed for quantity of life at the expense of quality of life. 22,[41][42][43][44] Very few articles comment on how QvQ is used in practice when discussing treatment options and goals of care. 21,25,45 Even fewer reflect on potential strengths and dangers of QvQ. ...
A restrictive and dichotomous question has become the primary approach in many goals of care discussions. Is the primary goal of care quantity of life through aggressive therapy or quality of life through comfort care and hospice? Even though many health care providers recognize that quality vs quantity of life (QvQ) is a false dichotomy, in practice QvQ underlies many goals of care discussions and can negatively impact patient care. This article offers strategies for assessing patients at the end of life, presenting a first-line conversation process that can support a range of treatment options as well as a diversity of dynamic patient values. Based on decades of experience in palliative care and a review of relevant literature, we recommend four practical questions to serve as values "vital signs," monitoring dynamic notions of quality of life and harmonizing patient values with treatment options.
... When receiving care at the end of life, patients are not always treated in line with their preferences. 2 Despite the widespread need for serious illness conversations to guide these decisions, most physicians report inadequate training in this area of practice 3 and likely develop varied communication skills influenced by their culture of practice. Recognizing this trend, the medical literature is beginning to identify best practices for discussion of goals at critical junctures, 3 and with better understanding of current communication approaches their standards could be more effectively taught across medical specialties. ...
... A majority of physicians who referred to comfort care expounded the benefits, such as symptom control and peace during the dying process. Some physicians, however, emphasized that comfort care could accelerate the dying process, especially when explaining the effects of morphine on breathing: ''With the medications that would make him more comfortable, it could potentially, actually, slow down his breathing, and he could be in a position where he would pass away a little faster'' (Participant [2][3][4][5][6][7][8][9][10][11][12][13][14]. No physician explicitly invoked the doctrine of double effect, which in some instances justifies the foreseen but unintended adverse effects of a treatment if the treatment's intended effect is morally acceptable, but the physicians who highlighted the potentially life-shortening consequences of comfort measures made it a point to balance the conversation of desired effects with the unintended consequences. ...
Importance:
Goals of care discussions at the end of life give opportunity to affirm the autonomy and humanity of dying patients. Best practices exist for communication around goals of care, but there is no research on differences in approach taken by different specialties engaging these conversations.
Objective:
To describe the communication practices of internal medicine (IM), emergency medicine (EM), and critical care (CC) physicians in a high-fidelity simulation of a terminally ill patient with stable and defined end-of-life preferences.
Design, Setting, and Participants:
Mixed-methods secondary analysis of transcripts obtained from a multicenter study simulating high stakes, time-limited end-of-life decision making in a cohort of 88 volunteer physicians (27 IM, 22 EM, and 39 CC) who were called to evaluate a standardized patient in extremis. The patient had clear comfort-oriented goals of care that the physician needed to elicit and use to inform treatment decisions. Discussions were coded at the level of the sentence for semantic content.
Exposures:
Data were analyzed by physician specialty.
Main Outcome Measure:
Occurrence of content codes indicative of prudent (right outcome by the right means) goals of care conversations. Data were analyzed both for number of occurrences of the code in a simulated conversation and for presence or absence of the code within a conversation.
Results:
There was no difference between physician types in intubation rates or intensive care unit admissions. Codes for "comfort as a goal of care," "noncurative goals of care," and "oblique references to death" emerged as significantly different between physician types.
Conclusions and Relevance:
This experiment shows demonstrable differences in practice patterns between physician specialties when addressing end-of-life decision making. Some of the variation likely arose from differences in setting, but these data suggest that training in goals of care conversations may benefit if it is adapted to the distinct needs and culture of each specialty.
... advance care planning; Medicare; end of life Advance care planning (ACP) is increasingly recognized as important for quality end-of-life (EOL) care. [1][2][3] It helps patients make important decisions and have control over the care they receive. 4 ACP is associated with a lower likelihood of dying in the hospital, 5 intensive care unit (ICU) admission 6 or hospital admission in the last 30 days, 7 and receiving life supporting measures, 6,8 and with a higher likelihood of hospice enrollment 5,6,8 and receipt of timely hospice care before death. ...
... 28,29 Irrespective of the impact on the overall healthcare costs, the impact on patients' health and well-being is an important measure of the effectiveness of EOL policies. 3 Our study has several limitations. First, we were not able to assess if the EOL outcomes were concordant with the discussed goals of care for the patients. ...
BACKGROUND/OBJECTIVE
The Centers for Medicare & Medicaid Services (CMS) reimburses clinicians for advance care planning (ACP) discussions with Medicare patients. The objective of the study was to examine the association of CMS‐billed ACP visits with end‐of‐life (EOL) healthcare utilization.
DESIGN
Patient‐level analyses of claims for the random 20% Medicare fee‐for‐service (FFS) sample of decedents in 2017. To account for multiple comparisons, Bonferroni adjusted P value <.008 was considered statistically significant.
SETTING
Nationally representative sample of Medicare FFS beneficiaries.
PARTICIPANTS
A total of 237,989 Medicare FFS beneficiaries who died in 2017 and included those with and without a billed ACP visit during 2016–17.
INTERVENTION
The key exposure variable was receipt of first billed ACP (none, >1 month before death).
MEASUREMENTS
Six measures of EOL healthcare utilization or intensity (inpatient admission, emergency department [ED] visit, intensive care unit [ICU] stay, and expenditures within 30 days of death, in‐hospital death, and first hospice within 3 days of death). Analyses was adjusted for age, race, sex, Charlson Comorbidity Index, expenditure by Dartmouth hospital referral region (high, medium, or low), and dual eligibility.
RESULTS
Overall, 6.3% (14,986) of the sample had at least one billed ACP visit. After multivariable adjustment, patients with an ACP visit experienced significantly less intensive EOL care on four of six measures: hospitalization (odds ratio [OR] = .77; 95% confidence interval [CI] = .74–.79), ED visit (OR = .77; 95% CI = .75–.80), or ICU stay (OR = .78; 95% CI = .74–.81) within a month of death; and they were less likely to die in the hospital (OR = .79; 95% CI = .76–.82). There were no differences in the rate of late hospice enrollment (OR = .97; 95% CI = .92–1.01; P = .119) or mean expenditures ($242.50; 95% CI = −$103.63 to $588.61; P = .169).
CONCLUSION
Billed ACP visits were relatively uncommon among Medicare FFS decedents, but their occurrence was associated with less intensive EOL utilization. Further research on the variables affecting hospice use and expenditures in the EOL period is recommended to understand the relative role of ACP.
... [8][9][10][11][12][13][14] At present, study data are mainly available from cancer patients, and noncancer patients are still underrepresented in palliative care. 15 However, the number of non-cancer patients in palliative care is increasing. [16][17][18] Folate and vitamin B12 have been mainly investigated in anaemic palliative care and cancer patients; 8 to the best of our knowledge, there are no studies on vitamin B6 (pyridoxal phosphate) concentrations in palliative care patients. ...
... The frequency of the symptoms pain (64.5% had medium-tosevere pain) and depression (51.6%) in our cohort correspond with published data from a larger survey. 15 Deficient vitamin B1 concentrations occurred in one-quarter of our patients, which is comparable to results of a previous study. 9 We found an association between (e) C (f) D3 Normal and optimal ranges were provided by the testing laboratory (Biovis Diagnostik MVZ GmbH). ...
Objective
The main purpose of palliative care is symptom relief. Frequently, the symptoms of patients requiring palliative care are the same as common symptoms of vitamin deficiency (e.g. pain, weakness, fatigue, depression). The study aim was to investigate whether patients in palliative care are vitamin deficient.
Method
This was a monocentre cross-sectional study. Patients attending the palliative care unit of a general hospital in Germany from October 2015 to April 2016 were examined for vitamin blood concentrations and symptoms. Data were analysed using univariate analysis and bivariate correlations.
Results
Data were available from 31 patients. Vitamin D3 deficiency (<62.5 nmol/L) affected 93.5% of patients, vitamin B6 deficiency (<4.1 ng/mL) 48.4%, vitamin C deficiency (<4.5 mg/L) 45.2%, vitamin B1 deficiency (<35 µg/L) 25.8% and vitamin B12 deficiency (<193 pg/mL) 12.9%. There was a significant negative correlation between vitamin B1 ranges and pain (r = −0.384) and depression (r = −0.439) symptoms.
Conclusion
All patients showed a deficiency in at least one of the measured vitamins; 68% had concurrent deficiencies in >1 vitamin. A follow-up study using validated questionnaires and a larger sample is needed to investigate the effects of targeted vitamin supplementation on quality of life and symptom burden.
... 1,2 Remarkably, the current evidence does not support the commonly held belief that end-of-life communication increases a patient's distress level. 2 In fact, many patients desire the truth about their prognosis and value other goals besides living longer. 1 Mounting evidence shows that the amount of suffering patients endure at the end of life is rather substantial. 3 As such, communication about goals of care (low-risk, highvalue intervention) results in improved patient outcomes and a better quality of life. 1 Many challenges continue to plague the role of effective communication at or near the end of a patient's life, including when to foster such discussions, a lack of knowledge and comfort in having such discussions, lack of training, increased clinician time in fostering such discussions, readiness and consistency in advance care directives, failure to address nonmedical goals, and difficulty in prognostication. 1,2,4 System barriers can range from lack of coordination to lack of adequate documentation or document standardization, time constraints, and lack of effective feedback. ...
... 1,2 Many physicians believe that having these difficult discussions is akin to forgoing care or giving up on their patients. 3 In 2014 the Institute of Medicine published Dying in America, an extensive report on care decisions at the end of life. This reports advocated that advance care planning is crucial and further emphasizes that a person-centered, familyoriented approach that honors patients' preferences and wishes and promotes quality of life through the end of life should be a national priority. ...
... Nor does it meet the needs of family members, who do not experience either better bereavement [36] or relief from their stress, pain, and suffering [37]. The overwhelming limitation of these issues to the field of palliative medicine [38] and the short shrift given them in curative medicine creates an illusion that these topics are important only when death can no longer be postponed (i.e., when no curative treatment exists) [39]. Any cancer, however, is an arduous experience, regardless of its prognosis and the extent of the treatment burden. ...
... Although professional psychological interventions are useful for patients facing severe illness [41], not every patient needs these interventions. Splitting care and cure (and outsourcing care to other professionals) can produce silo cultures and negatively affect patient management and satisfaction [39]. Improving the education of oncologists may be a key factor in preventing this gap between care and cure, by preparing physicians to assume this dimension of care and develop awareness of their own practices. ...
Purpose:
Patients, family members, and physicians participate in cancer care, but their perspectives about what is helpful during cancer treatment have rarely been compared. The aim of this study was to compare these three perspectives.
Methods:
Multicenter qualitative study (with previously published protocol) based on 90 semi-structured interviews. Participants (purposively selected until data saturation) came from three different subsamples: (i) patients with cancer (n=30), (ii) their relatives (n=30), and (iii) their referring physicians (n=10, interviewed more than once).
Results:
Our analysis found 3 main axes (perceived positive effects of cancer treatment, perceived negative effects of cancer treatment, doctor-physician relationship), each composed of 2 main themes. The findings showed that patients, families, and physicians shared the long-term objective of increasing survival (while reducing side effects). However, patients and relatives also pointed out the importance of living with cancer each day and thus of factors helping them to live as well as possible in daily life. The physicians' difficulty in coping with patients' suffering may limit their access to elements that can improve patients' capacity to live as well as possible.
Conclusions:
During cancer treatment (and not only at the end of life), attention should be given to enhancing the capacity of patients to live as well as possible (not only as long as possible) to meet the goals of patient-centered care and satisfy this important need of patients and families.
... Patients who were approached by a healthcare professional and had a discussion on EOL care planning spent much less time in the hospital, particularly in the ICU (Curtis, 2004;Holden et al., 2015). Furthermore, Medicare now provides payment for such conversations (Gawande, 2016). Previous research suggests that social workers who have their own advance directive are more likely to discuss completing an advance directive with their patients (Perry, Swartz, Smith-Wheelock, Westbrook, & Buck, 1996). ...
This article identifies how clinical social workers in medical-surgical, mental health, and nephrology settings at Walter Reed National Military Medical Center (WRNMMC) and the End-Stage Renal Disease (ESRD) Network 5 Mid-Atlantic Renal Coalition assist nephrologists and other physicians in overcoming barriers to end-of-life (EOL) care planning, particularly in patients with end-stage renal disease (ESRD) or acute kidney injury (AKI). To assess differences in practice patterns, an anonymous survey was administered to determine whether social workers were comfortable having EOL care discussions with their patients, and to also assess if these social workers were able to assist the physicians with EOL care planning. Findings showed that social workers identified multiple barriers to discussing EOL care planning. Participants also identified the most important conversations to have when discussing EOL care planning with their patients.
... Current interest in interprofessional collaboration, team science, coping with chronic illness, quality of life and health disparities, and access to care (Bourgois et al., 2017;Falvo & Holland, 2017;Gawande, 2016;Havyer et al., 2016;Libby et al., 2016) offers additional roles for psychologists to model high-quality patient care and explore healthcare from a patient-centered biopsychosocial perspective. One particularly fertile area of opportunity for psychologists in healthcare settings is interprofessional education (IPE). ...
Many practicing psychologists enjoy being involved in training, but clear opportunities for such involvement are not always apparent. When it comes to medical education, the process of getting involved may seem especially mysterious and intimidating. At the same time, the unique competencies that psychologists possess, including their expertise in research, human diversity, the patient-provider relationship, and the psychosocial dimension of illness, can add significant value to the training of competent and compassionate physicians. This article brings together the perspectives of four practicing health service psychologists, one academic psychologist, and one psychiatrist, each of whom has had a significant role in a medical education setting. The authors use their personal examples and illustrations from their own professional journeys to identify potential access points into graduate medical education. They offer practical advice for getting involved, highlighting the importance of owning one’s expertise, respecting the expertise of other disciplines, seeking out interprofessional collaborations, and saying “yes” to new opportunities when they arise.
... 17,18 Given that prognostic uncertainty is a well-known factor preventing timely hospice referrals, particularly for noncancer diagnoses, we echo earlier calls to modify the Medicare hospice benefit eligibility to include patients based on symptom burden and care needs, 51 those with a life expectancy more than 6 months, 52 or those undergoing concurrent diseasemodifying treatment. 53,54 We further advocate for interventions to ensure that every hospice-eligible person is informed about hospice and given an opportunity to discuss whether their goals of care are consistent with what it provides. 6 ...
Objectives:
Reliable national estimates of hospice use and underuse are needed. Additionally, drivers of hospice use in the United States are poorly understood, especially among noncancer populations. Thus the objectives of this study were to (1) provide reliable estimates of hospice use among adults in the United States; and (2) identify factors predicting use among decedents and within subsamples of cancer and noncancer deaths.
Design:
We conducted a prospective cohort study using the Health and Retirement Study survey. Excluding sudden deaths, we used data from the 2012 survey wave to predict hospice use in general, and then separately for cancer and non-cancer deaths.
Setting:
Study data were provided by a population-based sample of older adults from the U.S.
Participants:
We constructed a sample of 1,209 participants who died between the 2012 and 2014 survey waves.
Measurements:
Hospice utilization was reported by proxy. Exposure variables included demographics, functionality (activities of daily living [ADLs]), health, depression, dementia, advance directives, nursing home residency, and cause of death.
Results:
Hospice utilization rate was 52.4% for the sample with 70.8% for cancer deaths and 45.4% for noncancer deaths. Fully adjusted model results showed being older (odds ratio [OR] = 1.54), less healthy (OR = .79), having dementia (OR = 1.52), and having cancer (OR = 5.47) were linked to greater odds of receiving hospice. Among cancer deaths, being older (OR = 1.64) and female (OR = 2.54) were the only predictors of hospice use. Among noncancer deaths, increased age (OR = 1.58), more education (OR = 1.56), being widowed (OR = 1.55), needing help with ADLs (OR = 1.13), and poor health (OR = .77) were associated with hospice utilization.
Conclusion:
Findings suggest hospice remains underutilized, especially among individuals with noncancer illness. Extrapolating results to the US population, we estimate that annually nearly a million individuals who are likely eligible for hospice die without its services. Most (84%) of these decedents have a noncancer condition. Interventions are needed to increase appropriate hospice utilization, particularly in noncancer care settings.
... Although the case for the integration of personal goals is compelling, a paucity of effective strategies for seamless clinical workflow integration 33 means that clinicians often lack skills to: (1) elicit patient goals, preferences, and values and (2) tune care to align with these aims. 34 Without a reliable process for shared goal setting, outcomes will remain suboptimal. Incorporating a patient and caregiver's perspective into the goal-setting process requires education and skill. ...
Introduction: Productive interactions between engaged patients and clinical teams are key to effective clinical practice. Accordingly, the identification of needs and priorities through the process of collaborative goal setting is fundamental to patient-centered care. Executing a goal-setting process that is truly collaborative is challenging; many caregivers do not feel that they are adequately involved in the goal-setting process. This study presents the results of an initiative intended to understand goal concordance between therapists and caregivers.
Methods: We conducted an observational, cross-sectional design study. Twenty-nine pediatric physical and occupational therapists developed and documented collaborative goals for their patients. Over 6 months, 120 randomly selected caregivers from a weekly list of patients scheduled for a follow-up physical or occupational therapy visit participated. Caregivers completed structured interviews related to their children’s therapy goals. We calculated agreement coefficients between caregiver-perceived goals and therapist-documented goals.
Results: Overall strength of agreement was poor (M = −0.03, SD = 0.71). There were no significant differences within variables of a goal setter, goal importance, or goal utility. Median agreement coefficients were greatest for goals perceived to be identified solely by the caregiver, perceived as important, and perceived as functionally useful.
Conclusions: The results of this study underscore the state of discordance in the collaborative goal-setting process in pediatric physical and occupational therapy. Healthcare encounters continue to be framed by provider perspectives and priorities. Developing therapy goals that enhance family involvement, relate to function, and are important to the healthcare consumer may improve the agreement.
... Historically, the dominant paradigm in medicine has been geared toward preservation of life at all costs, even in the very late stages of severe, incurable, and even terminal disease. Particularly when it comes to people with advanced chronic illness, this focus on "quantity of life" has recently become questioned and is being challenged by a movementa societal movement, but also within medicine itselfadvocating a shift in focus and perspective toward "quality of life" (Gawande 2016). This socio-cultural perspective shift is within medicine mainly represented by the palliative care movement, which has developed considerably in the past decades. ...
... They also know that this conversation should not wait until the last days or hours of life to take place. GOC conversations are essential, considering the evidence from human medicine suggesting that patients not only receive care inconsistent with their goals and values at the end of life, but also care that does not address, and may actually result in, considerable suffering (Gawande, 2016;Institute of Medicine, 2015;Singer et al., 2015). Similar concerns are now emerging in veterinary practice. ...
... For physicians, their neglect to initiate such a conversation has shown to reduce their satisfaction about end-of-life care and results in less connection with dying patients (Sullivan et al., 2007). However, physicians' awareness of patients' impending death and willingness to discuss it humanizes medical care and improves decision making (Houttekier, Witkamp, van Zuylen, van der Rijt, & van der Heide, 2014) concerning the trade-off in the quality of life for therapies that may extend life (Gawande, 2016). Nonetheless, for some physicians, discussing impending death is still a distressing subject of clinical care (Studer, Danuser, & Gomez, 2017). ...
Not all physicians readily discuss death with their terminal patients. To explore whether physicians discuss dying with their terminal patients and to pursue an in-depth understanding of patients’ perceptions of death, we interviewed terminal cancer patients in a Dutch hospice and compared their stories to quotes from two autobiographies on dying from cancer, Christopher Hitchens’ Mortality and Anatole Broyard’s Intoxicated by my illness. This narrative medicine study could potentially teach physicians they should discuss impending death to prevent the use of an invasive medical treatment that typically extends the quantity, but not the quality, of life.
... Historically, the dominant paradigm in medicine has been geared toward preservation of life at all costs, even in the very late stages of severe, incurable, and even terminal disease. Particularly when it comes to people with advanced chronic illness, this focus on "quantity of life" has recently become questioned and is being challenged by a movementa societal movement, but also within medicine itselfadvocating a shift in focus and perspective toward "quality of life" (Gawande 2016). This socio-cultural perspective shift is within medicine mainly represented by the palliative care movement, which has developed considerably in the past decades. ...
This chapter deals with the topic of medical decisions and decision-making that occur at the end of life and have the potential to allow the patient to die or hasten death. These decisions include: withholding and withdrawing treatment, intensified management of pain and other symptoms, active shortening of life without explicit patient request, euthanasia, physician-assisted suicide, and voluntary stopping eating and drinking. Evidently, such decisions are subject to considerable ethical deliberation and scrutiny, apart from their applicability in the legal framework of some jurisdictions. In this contribution, the main ethical principles – autonomy, beneficence, nonmaleficence and justice – are considered in the context of end-of-life decision-making. We go on with a discussion of intensely debated special topics such as: proportionality, the principle of double effect, (medical) futility, nonabandonment, and vulnerability. Next a glossary is provided of the most pertinent issues inherent in each type of end-of-life decision. Examples include: opioid phobia in pain management, the “slippery slope” argument in the assisted dying debate, and the relationship between palliative care and assisted dying. Finally, attention turns to a number of important topics related to communication in end-of-life decision-making: truth-telling, shared decision-making, advance care planning & advance directives, conflict, and cultural issues.
... [26][27][28] It needs to be made clear that seeking palliative care does not necessarily require stopping curative care; it does not mean giving up hope. 29 If the early start of palliative care can result in many positives, the conditions to integrate palliative care with active cancer care should be constructed systematically. [30][31][32][33] This path needs to be supported by policies, including financial, to increase timely access to palliative care, favoring value-oriented care at the end of life. ...
Background:
Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life.
Aim:
To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life.
Design:
Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model.
Setting/participants:
The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015.
Results:
Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04-0.06), emergency department visits (OR = 0.23, 95% CI: 0.21-0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26-0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21-0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10-0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21-1.33) ( p < 0.01 for all comparisons).
Conclusion:
Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.
... 50 Besides the strengthening of advanced care planning conversations, a closer link between curative therapy and palliative care services is warranted. 51,52 Additionally, linking patient-provider communication and outcomes might be helpful in developing evidence-based interventions in cancer care. 53 International evidence demonstrated that the costs of introduction of comprehensive palliative care services may pay off. ...
Purpose
Current evidence on the care-delivering process and the intensity of treatment at the end-of-life of cancer patients is limited and remains unclear. Our objective was to examine the care-delivering processes in health care during the last months of life with real-life data of Swiss cancer patients.
Patients and methods
The study population consisted of adult decedents in 2014 who were insured at Helsana Group. Data on the final cause of death were provided additionally by the Swiss Federal Statistical Office. Of the 10,275 decedents, 2,710 (26.4%) died of cancer. Intensity of treatment and health care utilization (including transitions) at their end-of-life were examined. Intensity measures included the following: last dose of chemotherapy within 14 days of death, a new chemotherapy regimen starting <30 days before death, more than one hospital admission or spending >14 days in hospital in the last month, death in an acute care hospital, more than one emergency visit and ≥1 intensive care unit admission in the last month of life.
Results
In the last 6 months of life, 89.5% of cancer patients had ≥1 transition, with 87.2% being hospitalized. Within 30 days before death, 64.2% of the decedents had ≥1 intensive treatment, whereby 8.9% started a new chemotherapy. In the multinomial logistic regression model, older age, higher density of nursing home beds and home care nurses were associated with a decrease, while living in the Italian- or French-speaking part of Switzerland was associated with an increase in intensive care.
Conclusion
Swiss cancer patients insured by Helsana Group experience a considerable number of transitions and intensive treatments at the end-of-life, whereby treatment intensity declines with increasing age. Among others, increased home care nursing might be helpful to reduce unwarranted treatments and transitions, therefore leading to better care at the end-of-life.
... Goals of Care conversations are essential, considering evidence from human medicine suggesting that patients not only receive care inconsistent with their goals and values at the end of life, but also care that does not address, and may actually result in, considerable suffering. [4][5][6] Similar concerns are emerging in veterinary practice. Research in human medicine regarding end of life preferences consistently demonstrates positive outcomes from early Goals of Care discussions. ...
... In the economics of health and care, care at the end of life is increasingly recognised as involving elements of value that go beyond gain in health. Across academic health economics (Normand, 2009(Normand, , 2012) (anonymous1), popular medical writing (Gawande, 2014(Gawande, , 2016, and national policy (Canada, 2007;Department of Health, 2008;Department of Health and Ageing, 2010;Parliamentary Assembly, 2009), there is increasing realisation that focusing just on gains in health at this point in the life course, usually considered to be the last year of life (although this, of course, may be difficult to predict), may be much too narrow and restrictive (anonymous1, anonymous5). Equally limiting, however, is an over-emphasis in policy and much practical research in end of life care, on place of death as the sole outcome of end of life provision. ...
End of life care may have elements of value that go beyond health. A generic measure of the benefits of end of life care could be helpful to decision makers. Such a measure, based on the capability approach, has recently been developed: the ICECAP Supportive Care Measure. This paper reports the first valuation exercise for that measure, with data from 6020 individuals collected from an on-line general population panel during June 2013. Individuals were asked to complete a stated choice experiment that combined best-worst scaling and a standard discrete choice experiment. Analysis of the best-worst data used limited dependent variable models within the random utility framework including the multinomial logit models and latent class choice model analysis. Exploratory steps were taken to determine the similarity of the best-worst and DCE data before formal testing and pooling of the two data sources. Combined data were analysed in a heteroscedastic conditional logit model adjusting for continuous scale. Two sets of tariffs were generated, one from the best-worst data capturing only main effects, and a second from the pooled data allowing for two-way interactions. Either tariff could be used in economic evaluation of interventions at the end of life, although there are advantages and disadvantages with each. This extensive valuation exercise for the ICECAP Supportive Care Measure with a large number of members of the general public could be complemented in the future with best-worst scaling studies amongst those experiencing the end of life.
... One large-scale study found serious concerns with the medical care of seriously ill patients in hospitals, including physicians being unaware of patients' do-not-resuscitate orders (DNR), aggressive and medically unnecessary treatment, and evidence of ineffective pain management (Connors 1995). A recent editorial in JAMA concludes that Bwhen care is provided with a narrow focus on disease control […] patients experience more pain, more anxiety, and more family exhaustion; they receive more nonbeneficial care and more hospitalization; and they do not live longer^ (Gawande 2016). Some even suggest that Bthe less money spent in this time period, the better the death experience is for the patient^(Bell 2013). ...
THESIS: Despite spending more on medical care than any other country in the world, the United States still boasts some of the worst patient outcomes of any developed nation. This disparity is especially true of how Americans give birth and die. These natural human transitions have become catastrophically expensive and leave patients and their families traumatized from unnecessary interventions. This article examines the costs and outcomes associated with the medicalization of birth and death and argues that alternatives exist that improve patient outcomes while lowering costs. Access to these alternatives will require changing current regulatory and reimbursement structures and providing trained support staff to help families navigate beginning- and end-of life decisions.
... Territorialist thinking ignores the universality of nursing needs and also interrupts the continuity of care. As the popular medical writer Atul Gawande 19 says, ''Everyone dies. Death is not an inherent failure. ...
... [21] However, there are not enough palliative specialists to serve all patients with lifelimiting disease. [22] Currently, palliative care is often the responsibility of the oncologist with transition to hospice when curative intent is abandoned. [23] The involvement of the surgeon is poorly defined and often overlooked. ...
Background:
Peritoneal carcinomatosis represents widespread metastatic disease throughout the abdomen and/or pelvis. Cytoreductive surgery/hyperthermic intraperitoneal chemotherapy (CRS/HIPEC) improves the overall survival compared to standard therapy alone. The role palliative care (PC) plays however, remains poorly studied among these patients.
Methods:
Patients who had previously undergone HIPEC and who underwent an inpatient admission from 7/1/2013 to 6/30/2014 were identified to determine which patients were referred for inpatient or outpatient palliative consultation. Multivariable logistic regression analysis was performed to identify risk factors associated with the use of PC.
Results:
Of the 60 patients analyzed, 23 (38.3%) had a PC consultation with a median time to PC referral of 310 (IQR: 151-484 days). Patients who were prescribed opioids (no PC referral versus PC referral: 46.0% versus 91.3%, P < 0.001), patients who reported the use of a cancer-related emetic (35.1% versus 87.0%, P < 0.001), patients reporting the use of total parenteral nutrition (16.2% versus 39.1%, P = 0.046), and patients dependent on a gastric tube for nutrition (5.4% versus 43.5%, P < 0.001) were more likely to be referred to a PC consultation. On multivariable analysis, use of opioids, use of a cancer-related antiemetic, and the use of a G-tube were independently associated with a greater odds for being referred to PC (all P < 0.05).
Conclusions:
Approximately one-third of patients were referred to PC following cytoreductive surgery/hyperthermic intraperitoneal chemotherapy. Palliative care referrals were most commonly used for patients with chronic symptoms, which are difficult to manage, especially toward the end of life.
... patients' preferences and aligning their care accordingly (11). For policy makers, a better understanding of local-level variation in end-of-life care should help in their efforts to provide appropriate facilities and services to improve the quality and efficiency of care for patients dying with cancer. ...
Introduction:
Despite the preference of many patients to die at home, high proportions of patients with advanced cancer undergo major procedures, receive intensive care, and die in the hospital. The goal of this study is to examine variation in hospital utilization and site of death for patients dying with poor-prognosis cancer in the Regione Emilia-Romagna (RER), Italy.
Methods:
We conducted a retrospective, population-level study using administrative data. Patients were included if they died in 2012 and had at least one hospital admission for metastatic or poor-prognosis cancer within 180 days of death. Variations in the use of the hospital, intensive care, and procedures performed were evaluated.
Results:
11,470 patients died with metastatic or poor-prognosis cancer in 2012. Seventy-eight percent of patients were hospitalized in the last month of life while 50.7% of patients died in the hospital. Results varied by local health authority from 38.3% to 69.3%. Of patients who had an ICU stay, 55.1% in the community hospitals and 59.8% in the teaching hospitals were admitted to the ICU on the day of death or the day before death. 7.5% of patients underwent a major procedure in the last 30 days of life.
Conclusions:
The overall high rate, and substantial variation, in hospital care at the end of life offers the RER the opportunity to evaluate if increasing availability of palliative care, along with provider and patient education, could reduce utilization of high-cost hospital care and increase patient and family satisfaction.
Objective:
A late conversation about palliative care needs can lead to suboptimal care in the final months/weeks of life. Insight into factors related to patients' communication about palliative care is needed. This study aims to identify the factors associated with starting/intending to start a conversation about palliative care with the physician.
Methods:
We performed a cross-sectional interviewer-administered survey among people with incurable cancer. Purposive sampling was used, taking into account theoretically relevant heterogeneity. The questionnaire was developed based on the theory of planned behavior. Uni- and multivariable logistic regression analyses were performed.
Results:
Out of 80 participants, ten (13%) started the palliative care conversation and 18 (23%) intended to do so. People holding a positive attitude towards starting/intending to start the conversation (OR 4.74; 95%CI 2.35-9.54), perceiving more benefits of it (OR 2.60; 95%CI 1.37-4.96) and perceiving a positive attitude towards the behavior in family/friends (OR 2.07; 95%CI 1.26-3.41) and the physician (OR 2.19; 95%CI 1.39-3.45) were more likely to start/intend to start a palliative care conversation; people perceiving more disadvantages (OR 0.53; 95%CI 0.32-0.87) and barriers (OR 0.31; 95% CI 0.15-0.63) were less likely to do so. These factors explained 64% of the variance.
Conclusions:
Our findings show that psychological and perceived socio-environmental factors, particularly patients' attitudes, are associated with starting a conversation about palliative care. Theory-based interventions targeting these strong associations might have a high potential to empower people with cancer to take the initiative in communication about palliative care and tot improve timely initiation of palliative care. This article is protected by copyright. All rights reserved.
We often hear about the medicalization of death; many people die in hospital surrounded by a clinical environment and interventions. On the other hand, there are countries where even basic morphine may be difficult to be found. Again, some countries have hospices, which are a luxury when compared to developing countries. Qualify end of life care should be seen as a public health issue on the one hand and a health systems problem on the other. They argue that it is a global health problem because 85% of the 56 million deaths worldwide that occur annually are in developing countries. It is a public health problem because of the number of people it affects, including relatives’ wellbeing indirectly, and the large-scale population-based nature of some possible interventions. Defining quality end of life care is important, as the parameters used will need to be measured. There are common problems to end of life but they differ within the context in which they interplay with one another. A bottom-up approach is noted and proposed to help in the formulation of the cultural approach to end of life care. Such a contextual application will be more amenable to define what we mean by a ‘good’ death, how to implement care planning, how one can shift from cure to palliative care, and how truth can be handled in an approach to global end-of-life care. Moreover, the difference between what we mean by public health as opposed to health-of-the-public, end of life being more of a health-of-the-public as individuals rather than having a risk to confuse it with other terms such as community health, chronic disease, health promotion.
Importance
Advance care planning (ACP) is intended to maximize the concordance of preferences with end-of-life (EOL) care and is assumed to lead to less intensive use of health care services. The Centers for Medicare & Medicaid Services began reimbursing clinicians for ACP discussions with patients in 2016.
Objective
To determine whether billed ACP visits are associated with intensive use of health care services at EOL.
Design, Setting, and Participants
This prospective patient-level cohort analysis of seriously ill patients included Medicare fee-for-service beneficiaries who met criteria for serious illness from January 1 to December 31, 2016, and died from January 1, 2017, to December 31, 2018. Analyses were completed from November 1, 2020, to March 31, 2021.
Main Outcomes and Measures
Five measures of EOL health care services used (inpatient admission, emergency department visit, and/or intensive care unit stay within 30 days of death; in-hospital death; and timing of first hospice bill) and a measure of EOL expenditures. Analyses were adjusted for age, race and ethnicity, sex, Charlson Comorbidity Index, Medicare-Medicaid dual eligibility, and expenditure by hospital referral region (high, medium, or low). The primary exposure was receipt of a billed ACP service classified as none, timely (>1 month before death), or late (first ACP visit ≤1 month before death).
Results
Of the 955 777 Medicare beneficiaries who met criteria for serious illness in 2016 and died in 2017 or 2018, 522 737 (54.7%) were women, 764 666 (80.0%) were 75 years or older, and 822 684 (86.1%) were non-Hispanic White individuals. Among the study population, 81 131 (8.5%) had a timely ACP visit, and an additional 22 804 (2.4%) had a late ACP visit. After multivariable adjustment, compared with patients without any billed ACP visit, patients with a timely ACP visit experienced significantly less intensive EOL care on 4 of 5 measures, including in-hospital death (adjusted odds ratio [aOR], 0.85; 95% CI, 0.84-0.87), hospital admission (aOR, 0.84; 95% CI, 0.83-0.85), intensive care unit admission (aOR, 0.87; 95% CI, 0.85-0.88), and emergency department visit (OR, 0.83; 95% CI, 0.82-0.84). Only small or insignificant differences in late hospice use or mean total EOL expenditures were noted. Compared with patients without ACP, patients with late ACP experienced more intensive EOL care, including in-hospital death (aOR, 1.22; 95% CI, 1.19-1.26), hospital admission (aOR, 5.28; 95% CI, 5.07-5.50), intensive care unit admission (aOR, 1.57; 95% CI, 1.53-1.62), and emergency department visit (aOR, 3.87; 95% CI, 3.72-4.02).
Conclusions and Relevance
In this cohort study of US Medicare beneficiaries, billed ACP services during the EOL course of patients with serious illness were relatively uncommon, but if they occurred before the last month of life, they were associated with less intensive use of EOL services. Further research on the variables affecting hospice use and expenditures in the EOL period and the differential effect of late ACP is recommended to understand the relative role of ACP in achieving goal-concordant care.
Context
Although health systems need to track utilization and mortality, it can be difficult to obtain reliable information on patients who die outside of the health system. This leads to missing data and introduces the potential for bias.
Objectives
To evaluate the linkage of patient death data sources with a tertiary health system electronic health record (EHR) to increase the accuracy of health system end-of-life health care utilization data in the last month and six months of life
Methods
: The federal Death Master File (DMF) and North Carolina Department of Health and Human Services (NC DHHS) decedent files from 2017 and 2018 were linked to a health system EHR. Descriptive statistics and chi-square tests were utilized to define impact of additional data sources with demographic data and end-of-life utilization.
Results
: A total of 65,935 patient deaths were identified through our multi-step data integration process. Approximately a quarter of patients (28.3%) had at least one health system encounter in the last six months of life. Of these, patient deaths identified only in the NC DHHS file were less likely (OR 0.45 [95%CI 0.39-0.52]) to be hospitalized in the last month of life.
Conclusion
: We describe a method to supplement EHR data with decedent information across data sources. While additional decedent data improves the accuracy of death data in the health system, patient healthcare utilization is biased towards those who use the health system at the end of life.
Psychosomatic medicine (MP) and palliative care are disciplines with history and both are based in the scientific world. Although the psychosomatic diagnosis is exclusionary, it can help palliative care to be more effective. The influence of the psychosomatic in the palliative exists. According to all the bibliography available in the electronic databases, psychosomatic medicine is a biopsychosocial model related to both physical and psychosocial factors, which helps improve the care of patients with advanced cancer in palliative care (improved survival, quality of life, reduces the burden on caregivers). It helps analyze and address psychiatric disorders, as well as in the control of complex symptoms such as life-threatening anxiety, depression or delirium. Therefore, both medical disciplines are related from the beginning and help to the quality of life of terminally ill patients.
Objectives
Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underlying determinants that might contribute to starting palliative care.
Methods
A qualitative study with 16 family carers of deceased persons who used palliative care was conducted using semistructured, face-to-face interviews. Constant comparison analysis was used to identify groups of behaviours that influenced starting palliative care and related determinants. The behavioural determinants were matched with concepts in existing behavioural theories. A preliminary behavioural model was developed.
Results
Most reported behaviours regarding starting palliative care were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (eg, of poor health), knowledge (eg, concerning palliative care), attitudes (eg, negative connotations of palliative care) and social influences (eg, important others’ opinions about palliative care).
Conclusions
This study identified relevant family carers’ behaviours and related determinants that can contribute to starting palliative care. As these determinants are changeable, the palliative care behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting palliative care.
If a patient is no longer able to speak for themselves, others must speak for them. Physicians who care for the critically ill are all too familiar with having to make end-of-life decisions for patients who are unable to make their wishes known. Sometimes patients make provisions for future healthcare decisions in the form of an advanced directive or a Physician’s Orders For Life-Sustaining Treatment (POLST). Without documentation, however, physicians often rely on surrogates. End-of-life decisions can be overwhelming for these surrogates, and as our population ages, more and more family members, friends, colleagues, and loved ones are finding themselves in this daunting position. As healthcare professionals we can support surrogates by starting discussions early, highlighting patient priorities, and establishing goals of care. An end-of-life shared decision model is a cohesive approach which includes physicians, palliative care providers, nursing staff, social work, clergy, and the patient’s family. This collaborative process has the potential to honor a patient’s priorities and to help surrogates and family members feel more comfortable with the decision-making process. How we frame end-of-life discussions, the explanations and terminology we use, and the compassion we show play a large role in the death process not only for the patient but for the family as well.
Objective
Communication and patient‐centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour “starting a conversation about palliative care with a professional carer” from the perspective of people with incurable cancer.
Methods
A qualitative study using semi‐structured face‐to‐face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
Results
Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
Conclusion
The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
Advance care planning (ACP) has been identified as a fundamental part of every patient’s total health care plan and is actively supported by a number of health care organizations. Despite these endorsements, however, having advance care planning conversations has not come easily for physicians. Training future physicians should include practical ways to address this issue. Fifty physicians at an oncology hospital, who were identified as having the most ACP conversations, were approached. Twenty-six percent participated in a survey which was sent out electronically via Qualitrics. All answers were recorded online and responses were collected and analyzed according to thematic analysis methodology. Major themes were noted and summarized for each of the survey’s 10 questions, resulting in how the physicians can successfully plan for and initiate advance care planning conversations with their patients and families. Themes touched upon self-awareness, one’s outlook on the value of life, and the importance of death as part of the care continuum. A physician’s own perception of the value of ACP conversations greatly influences them having those conversations. Furthermore, it is key that the physician understands and be aware of the patient’s perspective regarding their cancer and how it impacts them. This dynamic will then allow the physician to better align their plan of care with the treatment goals and expectations of the patient. Future training programs should incorporate these suggestions.
Most neurologic diseases are incurable. Palliative care is vital in the treatment of companion animals with serious or chronic neurologic disease. A Neuropalliative Care Core Skill Set includes multifaceted communication competencies and symptom management. Because some of the most common clinical signs of neurologic disease are also associated with stress of caregiving, veterinarians should understand their clients’ unique potential for caregiver burden. Acknowledging caregiver burden in their clients, means that veterinarians treating patients with neurologic disease must be proactive in building their own resilience to the occupational stress inherent in treating their patients and supporting their patients’ caregivers.
Since a large number of patients with chronical medical diseases die in hospital, often in an internal medicine ward, internists are urged to improve their expertise in end-of-life (EOL) care, which is a neglected part of their academic education. Recently, FADOI (the Italian Federation of the Associations Hospital Doctors on Internal Medicine) has addressed EOL-medicine in many ways, promoting many scientific meetings on this and allied topics, providing educational material made available in its website on a free basis and establishing an ad hoc Committee charged with the task of organizing dedicated events annually. The Committee has also elaborated a series of recommendations on EOL-care in internal medicine (a decalogue), reflecting largely shared visions. It has been endorsed also by ANIMO (the Association of the Italian Nurses working in an Internal Medicine Department). The decalogue for EOL care in internal medicine is issued here, and calls for its diffusion and implementation. The driving concept is that doctors and nurses must feel responsible for disregarding appropriate EOL-care for the dying patients, because delaying it means to add suffering and discomfort to them in the final phase of their existence.
Context:
Trends in symptoms and functional ability are known towards the end of life, but less is understood about quality of life, particularly prospectively following service referral.
Objectives:
This study compares quality of life trajectories of people with and without cancer, referred to volunteer provided palliative care services.
Methods:
A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer). Quality of life data (WHOQOL-BREF) were collected at baseline (referral), 4, 8 and 12 weeks. Socio-demographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study.
Results:
People with cancer had a significantly better quality of life at referral to the volunteer provided palliative care services than those with non-malignant disease despite similar demographic characteristics (Cohen d's=.37 to .45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with non-malignant disease.
Conclusion:
Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer provided palliative care services.
Background:
Aggressive medical care at the end of life can be harmful to patients and families, but its prevalence in use among younger cancer patients is unknown. The goal of the study was to report on the use of aggressive care and hospice services for patients younger than age 65 years.
Methods:
Using the HealthCore Integrated Research Database, we analyzed patients who died between 2007 and 2014 with metastatic lung (n = 12 764), colorectal (n = 5207), breast (n = 5855), pancreatic (n = 3397), or prostate (n = 1508) cancer. Based on published quality measures, we assessed uses of chemotherapy, intensive care, emergency room visits, and hospice care at the end of life. We examined additional items including radiotherapy, invasive procedures, hospitalization, and in-hospital deaths. Multivariable modified Poisson regression models were used to adjust for age, sex, geographic region, rural/urban location, year of death, and regional education and income measures.
Results:
Across the five cancers, 10.1% to 14.1% of patients received chemotherapy within the last 14 days of life, 15.9% to 20.6% received intensive care in last 30 days, and 1.5% to 2.5% went to the emergency room two or more times in last 30 days. Hospice enrollment at least three days before death was 54.4% to 59.6%. However, 55.3% to 59.3% of patients had a hospital admission in the last 30 days, and one-third died (30.3%-35.4%) in the hospital.
Conclusions:
There was low use of cancer-directed treatment at the end of life for younger cancer patients, and hospice use was higher than 50%. However, there was a relatively high utilization of hospital-based care. These results demonstrate an opportunity for continued improvements in the provision of high-value, patient-centered care at the end of life.
Aim:
To investigate older British South Asians' views on dying at acute hospitals.
Background:
Older people, including those from ethnic minorities prefer ‘home as a haven’ for their last days of life; however, they are more likely to die in hospital.
Methods:
Constructive grounded theory was used as a methodological approach that informed data collection to data analysis. Open meetings with 11 local South Asian community organisations enabled the researchers to recruit a total of 55 older South Asians in this study. Data were collected using gender-based focus groups (n=5) and in-depth, semi-structured interviews (n=29). Transcripts were analysed using Nvivo 9.
Results:
Three key themes were identified: ‘mistrust’, ‘let him not be alone’ and ‘family as a protective shield’. The theme ‘mistrust’ is explored through examination of beliefs, attitudes and expectations about ‘hospital’ as a place in the care of the dying. The theme of ‘let him not be alone’ draws the family's preferences and concerns in relation to leaving their older dying relative alone in the hospital. The final theme of ‘family as a protective shield’ describes the element of family care as a protective shield for their older one to have peaceful end-of-life care moments in the hospital.
Conclusions:
Allowing older relatives to die in hospital seems to evoke feelings of missed filial responsibilities and guilt among family carers among older ethnic minorities. The presence of cultural paranoia and mistrust often led minorities to experience sub-standard end-of-life care in acute hospitals.
This study explores how medical students feel about caring for terminally ill patients as well as how their medical courses prepare them for addressing end-of-life (EOL) issues with patients. Four hundred and five Mexican medical students were surveyed through the Student Views on Death questionnaire. The vast majority of students (94%) felt that physicians should inform patients of their impending death. Most students said they felt comfortable talking with (61%) or examining (76%) terminally ill patients. However, only half the students actually talked with patients about death. Participants in our study were interested in learning about EOL medical attention, yet most considered themselves poorly prepared to offer this type of care to terminally ill patients. The study provides objective data on a topic that has scarcely been explored in Mexico, data that will be useful in designing educational activities to improve EOL medical training.
BACKGROUND The burden of medications near the end of life has recently come under scrutiny, because several studies suggested that people with life-limiting illness receive potentially futile treatments. METHODS We identified 511,843 older adults (>65 years) who died in Sweden between 2007 and 2013 and reconstructed their drug prescription history for each of the last 12 months of life through the Swedish Prescribed Drug Register. Decedents' characteristics at time of death were assessed through record linkage with the National Patient Register, the Social Services Register, and the Swedish Education Register. RESULTS Over the course of the final year before death, the proportion of individuals exposed to ≥10 different drugs rose from 30.3% to 47.2% (P <0.01 for trend). Although older adults who died from cancer had the largest increase in the number of drugs (mean difference, 3.37; 95% confidence interval, 3.35 to 3.40), living in an institution was independently associated with a slower escalation (beta = -0.90, 95% confidence interval, -0.92 to -0.87). During the final month before death, analgesics (60.8%), anti-thrombotic agents (53.8%), diuretics (53.1%), psycholeptics (51.2%), and beta-blocking agents (41.1%) were the 5 most commonly used drug classes. Angiotensin-converting enzyme inhibitors and statins were used by, respectively, 21.4% and 15.8% of all individuals during their final month of life. CONCLUSION Polypharmacy increases throughout the last year of life of older adults, fueled not only by symptomatic medications but also by long-term preventive treatments of questionable benefit. Clinical guidelines are needed to support physicians in their decision to continue or discontinue medications near the end of life.
End-of-life care is not based on research-tested, evidence-based protocols because that research does not yet conclusively guide physicians to withhold care with absolutely certainty of the burden. According to Scott D. Halpern in the New England Journal of Medicine, the announcement by the Centers for Medicare and Medicaid Services regarding reimbursement rates for EOL care planning is a step in the right direction. However, the published research setting absolute standards for artificial support might change the culture dramatically. To determine which interventions actually improve outcomes, “more frequent and rapid conduct of large randomized trials and quasi-experimental studies” are necessary (p. 2001). A consensus needs to be reached about which outcome measures should be used in the studies to measure EOL intervention success. The urge to “do something” is leading healthcare organizations to implement policies and approaches that have not been tested. Slowing down and pursuing education and research before implementation can help achieve more successful outcomes in EOL care. EOL communication needs to allow patients and families to make fully informed treatment decisions that will lead to more successful long-term efforts and more telling results about quality outcomes.
L’article 115 du Code Pénal suisse permet l’assistance au suicide (AS) lorsqu’il n’y a pas de mobile égoïste. Il offre ainsi un « droit-liberté » à chaque citoyen. Bien que la loi ne précise pas le rôle du médecin ni n’exige sa présence, l’Académie Suisse des Sciences Médicales a publié des directives éthiques. La forte augmentation du nombre d’AS depuis 2004 questionne la société et les médecins, en particulier sur leur capacité d’entendre et de dialoguer autour de cette demande en fin de vie. Le soignant se doit d’entendre et d’analyser cet appel, en respectant la volonté de chaque patient.
Background and objectives:
To avoid "chemical restraints," policies and guidelines have been implemented to curb the use of medications for behavioral and psychological symptoms of dementia (BPSD). Antipsychotics have been particularly targeted because of their rare severe side effects. Consequently, caregiver directed non-pharmacologic therapies have increased while medication use for BPSD has diminished. Despite such initiatives, however, antipsychotics continue to be prescribed "off-label" for roughly 20% of nursing home patients. How caregivers impact management approaches and prescribing decisions for BPSD, including antipsychotic use, is poorly understood. Aim: assesses experiences and perceptions of family and nursing caregivers regarding factors influencing medication decisions for BPSD.
Research design and methods:
Semi-structured interviews, analyzed via template, immersion and crystallization, and thematic development. Thirty-two participants from Northwestern Virginia representing five groups of caregivers for dementia patients were interviewed: families of community-dwelling, assisted living, and nursing home patients, and nurses from the same assisted living/nursing home facilities.
Results:
Caregivers described three major themes regarding medications: (a) Systemic barriers exist for non-pharmacologic BPSD therapies. (b) Medications have few barriers, and seem generally effective and safe. (c) When non-pharmacologic measures fail, medications, including antipsychotics, may be necessary and appropriate for palliation of patient distress.
Discussion and implications:
To further reduce medications for BPSD, obstacles to services and alternative therapies must be mitigated. Caregiver perceptions that medications are generally safe and effective contribute to their continued use. Guidelines and policies for BPSD management should incorporate the caregiver position that medications, including antipsychotics, are sometimes justified and required to alleviate patient suffering.
Objective:
To determine whether an Early Warning System could identify patients wishing to focus on palliative care measures.
Design:
Prospective, randomized, pilot study.
Setting:
Barnes-Jewish Hospital, Saint Louis, MO (January 15, 2015, to December 12, 2015).
Patients:
A total of 206 patients; 89 intervention (43.2%) and 117 controls (56.8%).
Interventions:
Palliative care in high-risk patients targeted by an Early Warning System.
Measurements and main results:
Advanced directive documentation was significantly greater prior to discharge in the intervention group (37.1% vs 15.4%; p < 0.001) as were first-time requests for advanced directive documentation (14.6% vs 0.0%; p < 0.001). Documentation of resuscitation status was also greater prior to discharge in the intervention group (36.0% vs 23.1%; p = 0.043). There was no difference in the number of patients requesting a change in resuscitation status between groups (11.2% vs 9.4%; p = 0.666). However, changes in resuscitation status occurred earlier and on the general medicine units for the intervention group compared to the control group. The number of patients transferred to an ICU was significantly lower for intervention patients (12.4% vs 27.4%; p = 0.009). The median (interquartile range) ICU length of stay was significantly less for the intervention group (0 [0-0] vs 0 [0-1] d; p = 0.014). Hospital mortality was similar (12.4% vs 10.3%; p = 0.635).
Conclusions:
This study suggests that automated Early Warning System alerts can identify patients potentially benefitting from directed palliative care discussions and reduce the number of ICU transfers.
ResearchGate has not been able to resolve any references for this publication.