Article

Does Receipt of Hospice Care in Nursing Homes Improve the Management of Pain at the End of Life?

Authors:
  • Brown University School of Public Health
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Abstract

To compare analgesic management of daily pain for dying nursing home residents enrolled and not enrolled in Medicare hospice. Retrospective, comparative cohort study. Over 800 nursing homes in Kansas, Maine, Mississippi, New York, and South Dakota. A subset of residents with daily pain near the end of life taken from a matched cohort of hospice (2,644) and nonhospice (7,929) nursing home residents who had at least two resident assessments (Minimum Data Sets (MDSs)) completed, their last between 1992 and 1996, and who died before April 1997. The daily pain subset consisted of 709 hospice and 1,326 nonhospice residents. Detailed drug use data contained on the last MDS before death were used to examine analgesic management of daily pain. Guidelines from the American Medical Directors Association (AMDA) were used to identify analgesics not recommended for use in managing chronic pain in long-term care settings. The study outcome, regular treatment of daily pain, examined whether patients received any analgesic, other than those not recommended by AMDA, at least twice a day for each day of documented daily pain (i.e., 7 days before date of last MDS). Fifteen percent of hospice residents and 23% of nonhospice residents in daily pain received no analgesics (odds ratio (OR) = 0.57, 95% confidence interval (CI) = 0.45-0.74). A lower proportion of hospice residents (21%) than of nonhospice residents (29%) received analgesics not recommended by AMDA (OR = 0.65, 95% CI =0.52-0.80). Overall, acetaminophen (not in combination with other drugs) was used most frequently for nonhospice residents (25% of 1,673 prescriptions), whereas morphine derivatives were used most frequently for hospice residents (30% of 1,058 prescriptions). Fifty-one percent of hospice residents and 33% of nonhospice residents received regular treatment for daily pain. Controlling for clinical confounders, hospice residents were twice as likely as nonhospice residents to receive regular treatment for daily pain (adjusted odds ratio = 2.08, 95% CI = 1.68-2.56). Findings suggest that analgesic management of daily pain is better for nursing home residents enrolled in hospice than for those not enrolled in hospice.The prescribing practices portrayed by this study reveal that many dying nursing home residents in daily pain are receiving no analgesic treatment or are receiving analgesic treatment inconsistent with AMDA and other pain management guidelines. Improving the analgesic management of pain in nursing homes is essential if high-quality end-of-life care in nursing homes is to be achieved.

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... To date, knowledge is limited as to whether pain is systematically assessed, how it is assessed, what pain management strategies are undertaken, and the types of pain-associated outcomes achieved among U.S. patients receiving hospice care across various settings. [6][7][8][9] The few existing studies focused on a single setting (e.g., community-based hospice 7 or nursing homes 6,8,9 ). None examined outcomes of hospice pain management measured by changes in assessed pain from hospice admission to the time of discharge. ...
... To date, knowledge is limited as to whether pain is systematically assessed, how it is assessed, what pain management strategies are undertaken, and the types of pain-associated outcomes achieved among U.S. patients receiving hospice care across various settings. [6][7][8][9] The few existing studies focused on a single setting (e.g., community-based hospice 7 or nursing homes 6,8,9 ). None examined outcomes of hospice pain management measured by changes in assessed pain from hospice admission to the time of discharge. ...
... growing patient population. [7][8][9][10] In addition, we sought to identify patient, hospice agency, and geographic factors predicting these outcomes. ...
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Context: Knowledge is limited regarding pain assessment and management practices, as well as pain-related outcomes in hospice care. Objectives: To generate national estimates of pain assessment and management practices and outcomes of pain control among patients 65 years or older receiving hospice care in the U.S. and identify hospice discharge and agency characteristics predicting study outcomes. Methods: The 2007 National Home Health and Hospice Care Survey was analyzed. Multivariate logistic regressions were estimated to identify discharge and agency characteristics predicting guideline-concordant pain assessment and management practices and pain control outcomes. Results: A high percentage of discharges had pain assessment at admission (97%) and before discharge (93%); use of valid pain rating scales was relatively low (69% and 54% for first and last assessments, respectively). Almost 95% of patients received pain medication, but only 42% received nonpharmacologic therapies. About 70% of patients assessed with a valid pain scale saw improvement in the level of pain or remained free of pain from admission to discharge. Non-Hispanic blacks were less likely to have pain assessments, and Hispanics were less likely to receive opioid analgesics or to have pain-free status at discharge, compared with non-Hispanic whites. Patients receiving care from for-profit (vs. nonprofit) agencies were more likely to receive pain assessment with a valid scale before discharge but less likely to experience pain control or improvement. Conclusion: Greater use of valid pain assessment scales and nonpharmacologic therapies constitutes areas for improvement in hospice care. Targeted interventions are needed to address disparities in pain care by patient race and/or ethnicity and agency ownership status.
... Therefore, it remains unclear whether pain is one of the reasons for hospice referral or residents who received hospice care were more likely to develop pain. Many studies revealed hospice care is often targeted to dying residents with higher levels of reported pain as hospice care in LTCFs can lead to better pain assessment and management for dying LTCF residents [63][64][65][66]. Hospice care providers should recognize that residents with cognitive impairment who may not be able to self-report pain [67,68]. ...
... More possible reasons may be under-detected pain among LTCF resident without hospice care, especially among those with cognitive impairment [67,68,70]. On the other hand, many studies indicate that hospice positively affects and improves the assessment of symptoms including pain [63][64][65][66]. Efforts from both LTCF staff and hospice providers are needed to have pain better controlled for residents who received hospice care. ...
Article
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Background: Hospice care is designed for persons in the final phase of a terminal illness. However, hospice care is not used appropriately. Some persons who do not meet the hospice eligibility receive hospice care, while many persons who may have benefitted from hospice care do not receive it. This study aimed to examine the characteristics of, and one-year survivorship among, residents who received hospice care versus those who did not in long-term care facilities (LTCFs) in Canada. Methods: This retrospective cohort study used linked health administrative data from the Canadian Continuing Reporting System (CCRS) and the Discharge Abstract Database (DAD). All persons who resided in a LTCF and who had a Resident Assessment Instrument Minimum Data Set Version 2.0 (RAI-MDS 2.0) assessment in the CCRS database between Jan. 1st, 2015 and Dec 31st, 2015 were included in this study (N = 185,715). Death records were linked up to Dec 31th, 2016. Univariate, bivariate and multivariate analyses were performed. Results: The reported hospice care rate in LTCFs is critically low (less than 3%), despite one in five residents dying within 3 months of the assessment. Residents who received hospice care and died within 1 year were found to have more severe and complex health conditions than other residents. Compared to those who did not receive hospice care but died within 1 year, residents who received hospice care and were alive 1 year following the assessment were younger (a mean age of 79.4 [+ 13.5] years vs. 86.5 [+ 9.2] years), more likely to live in an urban LTCF (93.2% vs. 82.6%), had a higher percentage of having a diagnosis of cancer (50.7% vs. 12.9%), had a lower percentage of having a diagnosis of dementia (30.2% vs. 54.5%), and exhibited more severe acute clinical conditions. Conclusions: The actual use of hospice care among LTCF residents is very poor in Canada. Several factors emerged as potential barriers to hospice use in the LTCF population including ageism, rurality, and a diagnosis of dementia. Improved understanding of hospice use and one-year survivorship may help LTCFs administrators, hospice care providers, and policy makers to improve hospice accessibility in this target group.
... Hospice care offers proven benefits to terminally ill patients, including improved quality of life and decreased physical and psychosocial symptom burden [15,16]. Despite this evidence, fewer than half of Medicare decedents die on hospice services [17]. ...
... Core functions are distinguished from forms, which are the specific intervention activities that carry out core functions. In short, core functions explain the purpose of intervention components (why it matters and how it produces change), while form denotes activities (who is doing what, when, where, and how; note that although other research in the field uses the term "core components" [the essential EBI components that make an EBI effective and should not be adapted] and "adaptable periphery" [components that can be adapted without compromising effectiveness because they are not necessary to produce desired outcomes] [15][16][17], we have used the terms "core functions" and "forms" to align with recent PCORI methodology standards for the study complex interventions [12], as well as recent publications which advocate for use of core functions and forms instead of core components and adaptable periphery [13]). For example, in considering an intervention that is a reminder to a clinician to complete a specific care process, one core function of the intervention could be that the reminder is not easily dismissable/ignorable, the purpose of which is to ensure that the reminder is seen and acknowledged by the clinician. ...
Article
Adaptation of existing evidence-based interventions (EBIs) to improve their fit in new contexts is common. A critical first step in adaptation is to identify core functions (purposes) and forms (activities) of EBIs. Core functions should not be adapted as they are what account for the efficacy of EBIs. Despite their importance, core functions are rarely identified by EBI developers; methods for identifying them post hoc are lacking. We present a case study of theory-based methods for identifying core functions and forms post hoc. We developed these methods as the first step in a larger effort to adapt an existing EBI to improve the timeliness of referrals to hospice to a new patient population and care setting. Our methods were rooted in the Planned Adaptation Model (PAM). Through our case study, we developed six steps for identifying core functions and forms, as well as accompanying tools and methods. Our case study further operationalized PAM in several ways. Where PAM offered guiding tenets for identifying core functions and forms (review existing EBI materials, conduct primary data collection, and identify the theory of change), we produced specific tools (interview guides and codebooks) and methods (sampling approaches and analytic methods). Our case study extended PAM with the addition of two steps in the process of identifying core functions and forms: (a) identifying the usual care pathway, including barriers to the outcome of interest encountered in usual care, and (b) mapping EBI core functions onto an extant theory. Identifying core functions and forms is a critical first step in the adaptation process to ensure adaptations do not inadvertently compromise the efficacy or effectiveness of the EBI by compromising core functions. Our case study presents step-by-step methods that could be used by researchers or practitioners to identify core functions and forms post hoc.
... (57) It is often mentioned in NH studies where researchers witness an overall improvement of care outcome after initiating a new program that is designed for a target population (e.g., hospice program for dying patients). (50,(57)(58)(59)(60)(61)(62) Miller and colleagues reported that when a NH facility had greater hospice program enrollees, indicating higher exposure to specialized EoL care, resident outcomes such as better management of pain, 81 frequent pain assessments, 79,81 and reduced number of burdensome transfers to hospitals were seen throughout all residents, regardless of their hospice enrollment status. (61,63,64) This spillover phenomenon is thought to be caused by diffusion of knowledge.(65) ...
... (50,(57)(58)(59)(60)(61)(62) Miller and colleagues reported that when a NH facility had greater hospice program enrollees, indicating higher exposure to specialized EoL care, resident outcomes such as better management of pain, 81 frequent pain assessments, 79,81 and reduced number of burdensome transfers to hospitals were seen throughout all residents, regardless of their hospice enrollment status. (61,63,64) This spillover phenomenon is thought to be caused by diffusion of knowledge.(65) That is, a newly implemented program or protocol generates new knowledge, which then fuels changes in the practice pattern or culture of institution, in uencing care outcomes in general population. ...
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Background: The Physician Orders for Life-Sustaining Treatment program was developed to enhance quality of care delivered at end-of-life. Although positive impacts of the Physician Orders for Life-Sustaining Treatment Program use have been identified, the association between a state’s program maturity status and nursing home resident’s likelihood of dying in their current care settings, nursing homes, remain unanswered. Objective: Examine the impact of the Physician Orders for Life-Sustaining Program maturity status on nursing home residents’ odds of dying in nursing homes. Methods: Program maturity status data were linked with multiple datasets: Minimum Data Set, Vital Statistics Data, Master Beneficiary Summary File, Certification and Survey Provider Enhanced Reports, and Area Health Resource File. Stratifying residents on long-stay and short-stay, we used descriptive statistics and multivariable logistic regression models for total 595,152 individuals. Results: Controlling for individual and contextual variables, long-stay nursing home residents living in states where the program was mature status had 20% increased odds of dying in nursing homes (OR: 1.20; CI 1.02-1.43) compared to those who resided in states with non-conforming status. Individuals residing in states with developing program status showed 11% increase in odds of dying in nursing homes (OR: 1.12; CI 1.02-1.24) compared to non-conforming status. No significant difference was noted for short-stay nursing home residents. Conclusion: Mature and developing maturity status were associated with greater likelihood of dying in nursing homes among long-stay residents. Our findings inform that a well-structured advance care planning program such as Physician Orders for Life-Sustaining Program enhances care outcomes among older adults living in nursing homes.
... On the other hand, researchers also pointed out that supportive and palliative care can reduce the cost of treatment and health care (15)(16)(17). While many high-income countries have developed and implemented national policies to provide cancer supportive and palliative care (18)(19)(20), many middle and lower-income countries still have no policy and plan at local and national levels despite the high burden of the disease (21). In 2004, the first international resolution was issued in the field of palliative care (WHA 67.19) (22). ...
... The palliative care resolution issued by the World Health Assembly has created a strong motive for all countries to formulate palliative care policies, and in most countries, there is a big deal of effort made to ensure that all citizens access palliative care. However, in many developing countries there is still little or even no access to palliative care (19). In Iran, due to the high rates of cancer-related mortality and the high cost of treating this disease (70), the health system requires to design of a purposeful program that will prioritize providing palliative care services to patients with cancer. ...
Article
Full-text available
Context: Cancer is one of the leading causes of death globally. It changes the patient’s life, and not only causes many physical and emotional symptoms but also reduces the quality of life (QOL) in patients during the advanced stages of cancer. Today, the main approach in taking care of these patients is to provide supportive and palliative care with the aim of enhancing the QOL in patients and their families and to reduce the cost of treatment and health care. This study was conducted with the aim of comparing the policies and the strategies related to cancer supportive and palliative care in the selected countries, using the World Health Organization (WHO) guideline in the United Kingdom (UK), Malaysia, and South Africa. Evidence Acquisition: This study is a comparative study. The data were collected through reviewing scientific and administrative documents, WHO website and reports, the Ministry of health websites, and other authoritative websites. The search was done through texts in English and the databases, including Science Direct, Scopus, and PubMed between 2000 and December 2018. We used a strategy search according to Medical Subject Headings, using the keywords (cancer, palliative care, supportive care, patients, policies, programs, strategies, UK, Malaysia, and South Africa). The data were analyzed by content analysis approach, using MAXQDA software version 11. Results: The rates of cancer and mortality differed according to the health differences in the selected countries. With regard to palliative care, various policies and programs were implemented. The implementation of more policies was carried out by the Ministry of Health. In some countries, adequate funding was available to support programs. Countries have been trying to provide decent manpower to provide services. Despite the successes achieved in implementing palliative care programs, some factors, such as inadequate healthcare structures and insufficient financial resources have caused problems in implementing programs. Conclusions: Countries should consider palliative care as one of the important priorities of the health system and a way of enhancing QOL in patients with cancer and their families, and with regard to the context of each country, focusing on each area of practical guide, reviewing the status and available facilities, and learning from the experiences of other countries should be considered to achieve this goal.
... As hospice utilization in nursing homes has increased, researchers have also assessed residents' family members' impressions of hospice. Studies show that families believe hospice services in nursing homes improve symptom management, reduce pain and hospitalizations, and provide for overall improved quality of life compared to dying without hospice (Baer & Hanson, 2000), and this belief has been empirically validated (Miller, Gozalo, & Mor, 2001;Miller, Mor, Wu, Gozalo, & Lapane, 2002). Family members of nursing home residents who are on hospice report similar levels of anxiety and depression as family members of community-dwelling hospice patients, but have additional concerns related to the overall quality of nursing home care and the level of coordination between hospice and nursing home staff (Hwang et al., 2014;Oliver et al., 2014). ...
... [2][3][4][5][6][7] Access to palliative care for seriously ill patients is associated with improved patient and caregiver experience and improved outcomes. [3][4][5][6][7][8][9][10][11][12][13][14] Nevertheless, use of palliative care interventions, such as those targeting improved communication, remains uneven and suboptimal. 7,15,16 To improve the value of care for the seriously ill, experts and policy makers have called for a more thorough integration of palliative care into primary care. ...
Article
Full-text available
Background Communication about priorities and goals improves the value of care for patients with serious illnesses. Resource constraints necessitate targeting interventions to patients who need them most. Objective To evaluate the effectiveness of a clinician screening tool to identify patients for a communication intervention. Design Prospective cohort study. Setting Primary care clinics in Boston, MA. Participants Primary care physicians (PCPs) and nurse care coordinators (RNCCs) identified patients at high risk of dying by answering the Surprise Question (SQ): “Would you be surprised if this patient died in the next 2 years?” Measurements Performance of the SQ for predicting mortality, measured by the area under receiver operating curve (AUC), sensitivity, specificity, and likelihood ratios. Results Sensitivity of PCP response to the SQ at 2 years was 79.4% and specificity 68.6%; for RNCCs, sensitivity was 52.6% and specificity 80.6%. In univariate regression, the odds of 2-year mortality for patients identified as high risk by PCPs were 8.4 times higher than those predicted to be at low risk (95% CI 5.7–12.4, AUC 0.74) and 4.6 for RNCCs (3.4–6.2, AUC 0.67). In multivariate analysis, both PCP and RNCC prediction of high risk of death remained associated with the odds of 2-year mortality. Limitations This study was conducted in the context of a high-risk care management program, including an initial screening process and training, both of which affect the generalizability of the results. Conclusion When used in combination with a high-risk algorithm, the 2-year version of the SQ captured the majority of patients who died, demonstrating better than expected performance as a screening tool for a serious illness communication intervention in a heterogeneous primary care population.
... Additionally, there may some patients for whom even a temporary enrollment in hospice facilitates psychosocial support and pain management. 39,40 Further, many patients classified in this study as transferring or moving out of the service area may have enrolled in another hospice or palliative care program following discharge. ...
Article
Objectives: To report frequencies and associated risk factors for 4 distinct causes of live discharge from hospice. Design: Retrospective cohort study using electronic medical records of hospice patients who received care from a large urban not-for-profit hospice agency in New York City during a 3-year period between 2013 and 2015 (n = 9,190). Results: Roughly one in five hospice patients were discharged alive (21%; n = 1911). Acute hospitalization was the most frequent reason for live discharge (42% of all live discharges; n = 802). Additional reasons included elective revocation to resume disease-directed treatments (18%; n = 343), disqualification (14%; n = 271), and service transfers or moves (26%; n = 495). Multinomial logistic regression analyses revealed that risk for acute hospitalization was higher among younger patients (age AOR = 0.98 [95% CI = 0.98-0.99] P < .01), racial/ethnic minorities (Hispanic AOR = 2.23 [CI = 1.82-2.73] P < .001; African American OR = 2.46 [CI = 2.00-3.03] P < .001; Asian/other OR = 1.63 [CI = 1.25-2.11] P < .001), and patients without advance directives (AOR = 1.41 [95% CI = 0.98-0.99] P < .001). Disqualification occurred much more frequently among patients with non-cancer diagnoses, including dementia (AOR = 13.14 [95% CI = 7.96-21.61] P < .001) and pulmonary disease (AOR = 11.68 [95% CI = 6.58-20.74] P < .001). Transfers and service moves were more common among Hispanics (AOR = 1.56 [95% CI = 1.45-2.34] P < .001), African Americans (AOR = 1.35 [95% CI = 1.03-1.79] P < .05), patients without a primary caregiver (AOR = 1.35 [95% CI = 1.09-1.67] P < .001), and those without advance directives (AOR = 1.30 [95% CI = 1.07-1.58] P < .01). Conclusion: Further research into factors that underlie live discharge events, especially acute hospitalization, is warranted given their cost and burden for patients/families. Hospices should develop strategies to address acute medical crises and thoroughly evaluate patients' suitability, unmet needs, and knowledge about end-of-life issues at the time of hospice enrollment, especially for those with non-cancer diagnoses.
... Indeed, hospice care is associated with higher quality end of life care, including less burdensome treatments near the end of life and higher family satisfaction. [1][2][3][4][5] The impact of hospice on overall Medicare costs, however, is unclear. 1,[6][7][8][9] Expenditures for hospice care have dramatically increased as use of the benefit has increased -in 2012, 47% of Medicare beneficiaries received hospice services prior to death. ...
Article
Objectives: To describe differences in hospice services for patients living at home, in nursing homes or in assisted living facilities, including the overall number and duration of visits by different hospice care providers across varying lengths of stay. Design: Retrospective cohort study using hospice patient electronic medical record data. Setting: Large, national hospice provider. Participants: Data from 32,605 hospice patients who received routine hospice care from 2009 to 2014 were analyzed. Measurements: Descriptive statistics were calculated for utilization measures for each type of provider and by location of care. Frequency and duration of service contacts were standardized to a 1 week period and pairwise comparisons were used to detect differences in care provided between the three settings. Results: Minimal differences were found in overall intensity of service contacts across settings, however, the mix of services were different for patients living at home versus nursing home versus assisted living facility. Overall, more nurse care was provided at the beginning and end of the hospice episode; intensity of aide care services was higher in the middle portion of the hospice episode. Nearly 43% of the sample had hospice stays less than 2 weeks and up to 20% had stays greater than 6 months. Conclusion: There are significant differences between characteristics of hospice patients in different settings, as well as the mix of services they receive. Medicare hospice payment methodology was revised starting in 2016. While the new payment structure is in greater alignment with the U shape distribution of services, it will be important to evaluate the impact of the new payment methodology on length of stay and mix of services by different providers across settings of care.
... Staff education and greater interaction with hospice are linked to improved end of life care in LTCF, including symptom assessment and management (Miller et al. 2002). Developed from prior research (Frey et al. 2015b(Frey et al. , 2016, the Supportive Hospice and Aged Residential Exchange (SHARE) model ) is designed to (1) improve integration between specialist palliative care services offered by hospice and LTCF's, (2) aid the development of staff in-house expertise in palliative care delivery, (3) provide an ongoing feedback mechanism for facilities to identify areas of service delivery in need of improvement, (4) increase hospice nurses' (palliative care nurse specialists) gerontology/frailty care knowledge and expertise (Figure 1 SHARE model). ...
Article
Full-text available
In industrialised countries, a large number of older adults with increasingly complex end of life care needs will die while in long-term care. It is essential that processes be in place to facilitate quality end of life care in these settings. In collaboration with two local hospices over the course of one year, we developed a new model of palliative care within long-term care – Supportive Hospice Aged Residential Exchange (SHARE). SHARE fostered knowledge exchange between hospice nurses and long-term care staff to improve palliative care delivery within 20 long-term care facilities (LTCF’s). An in-depth qualitative investigation of the views of 59 healthcare professionals and 12 bereaved family members of residents, regarding SHARE implementation, was undertaken through semi-structured interviews. Transcripts were analysed thematically and mapped to the theoretical domains framework (TDF) in order to identify facilitators and challenges to SHARE implementation. Domains facilitating SHARE implementation provided benefits in terms of ‘knowledge’, ‘skills development’, and supported the mentoring and role modelling provided by the hospice. Challenges highlighted the resource constraints of the long-term care context. The use of the TDF has enabled the identification of essential components such as skills development, which facilitate the implementation of SHARE in LTCF’s.
... Consistent with prior research, we identified the importance of pain control being associated with respondent OAH. Miller and colleagues 41 reported that the desire for pain control is related to use of hospice care. In their study, people who received a daily pain management were more likely to enroll in hospice than those who did not. ...
Article
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Attitudes and opinions about end-of-life care among older adults are understudied. Using survey data from the American Association of Retired Persons (AARP) membership in Florida (N = 2714), this study identified predictors of opinions about hospice (OAH) among older adults. Relationships between race/ethnicity and attitudes were also examined. Results showed race of the respondent was the strongest predictor of one's OAH. Predictors of positive opinions of hospice included being of Caucasian race, non-Hispanic ethnicity, better health, greater familiarity with hospice, a high importance of pain control, the importance of fulfilling personal goals, a desire to have health-care professionals involved in one's care, and having engaged in advance care planning. These findings suggest a need for greater attention to culture-based elements in future research and practice.
... Previous studies have shown that patients' health and quality of life are not identical, and the psychological state is rather more important than physical when it comes to evaluating the quality of life (Smith et al. 1999;Papuć 2011). It is known that a hospice can improve the quality of care at the end of life (Kane et al. 1984;Miller et al. 2002;Gozalo et al. 2007). Research indicates that being a hospice patient is relevant to quality of life. ...
... Use of hospice has risen dramatically in the past 2 decades from 10% to almost 50% of decedents, and hospices are caring for more patients with a primary diagnosis of dementia, HF, and chronic obstructive pulmonary disease (12,13). Furthermore, the use of hospice is considered to be an indicator of high-quality end-of-life care (14), and many studies have demonstrated its benefits for patients and families (15)(16)(17)(18)(19)(20)(21)(22)(23). Not only is hospice a key home care model for seriously ill patients, but also it is cost saving to the Medicare program (24,25). ...
Article
Objectives: This study sought to: 1) identify the predictors of hospice enrollment for patients with heart failure (HF); and 2) determine the impact of hospice enrollment on health care use. Background: Patients with HF rarely enroll in hospice. Little is known about how hospice affects this group's health care use. Methods: Using a propensity score-matched sample of Medicare decedents with ≥2 HF discharges within 6 months, an Outcome and Assessment Information Set (OASIS) assessment, and subsequent death, we used Medicare administrative, claims, and patient assessment data to compare hospitalizations, intensive care unit stays, and emergency department visits for those beneficiaries who enrolled in hospice and those who did not. Results: The propensity score-matched sample included 3,067 beneficiaries in each group with a mean age of 82 years; 53% were female, and 15% were Black, Asian, or Hispanic. For objective 1, there were no differences in the characteristics, symptom burden, or functional status between groups that were associated with hospice enrollment. For objective 2, in the 6 months after the second HF discharge, the hospice group had significantly fewer emergency department visits (2.64 vs. 2.82; p = 0.04), hospital days (3.90 vs. 4.67; p < 0.001), and intensive care unit stays (1.25 vs. 1.51; p < 0.001); they were less likely to die in the hospital (3% vs. 56%; p < 0.001), and they had longer median survival (80 days vs. 71 days; log-rank test p = 0.004). Conclusions: Beneficiaries' characteristics, including symptom burden and functional status, do not predict hospice enrollment. Those patients who enrolled in hospice used less health care, survived longer, and were less likely to die in the hospital. A tailored hospice model may be needed to increase enrollment and offer benefits to patients with HF.
... Many studies have showed that patients who received hospice care were associated with improved outcomes, such as pain control, psychosocial and spiritual needs, and family satisfactory. [5][6][7] To date, access to hospice care is widely provided in Western countries, but the supply of such service is still limited in mainland China. [8,9] Other than the lack of policy and financial support from the government, the traditional Chinese notion that death and dying are taboo subjects is one of major obstructions in the development of hospice care. ...
Article
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Access to hospice care is widely provided in Western countries, but the supply of such service is still in its initiative stage in China. As relatives are often involved in end-of-life decision making in China, a better understanding of their cognitions toward hospice care would help policy makers and physicians to overcome the barriers of providing such service. Thus, we conducted the study to assess the level of knowledge and attitudes among Chinese outpatients and family members regarding hospice care.A cross-sectional study was conducted in Peking University Third Hospital and Peking University Shougang Hospital. Trained interviewers recruited outpatients or family members in two hospitals as a convenience sample to complete an anonymous face-to-face survey on demographic information, knowledge, and attitudes regarding hospice care.A total of 550 respondents completed this survey. Only 107 (19.5%) reported that they had known or heard of hospice care, with a mean knowledge score of 2.8 (standard deviation = 1.6). Of the respondents, 69.5% answered "strongly agree" or "agree" regarding the importance of providing hospice care in China. Participants who had known of hospice care were more likely to have favorite attitudes toward it.The awareness rate of hospice care is low in the study, which may lead to poor attitude and low enrollment rate. Considering the increasing evidence to support the improved outcomes of patients and family members associated with hospice care, the public education on its scope of services, benefits, and limitations is needed in China.
... Chlorpromazine is a dopamine antagonist with additional anti-adrenergic, anti- forms such as topical gels, suppositories, oral suspensions, sublingual concentrates and troches [81]. Some diseases states which may require alternate medications include pain management, anxiety, nausea and vomiting, and wound care [82][83][84]. For example, nausea is a common unpleasant effect that induces a vomiting sensation and requires an alternative route of administration for anti-emetics, especially in hospice patients [85]. ...
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The overall objective of this work is to determine the percutaneous absorption of chlorpromazine hydrochloride from PLO gels and verify the suitability of a topically applied chlorpromazine PLO gel for use in hospice patients to relieve symptoms such as vomiting and nausea at the end stages of life. The aims of the present study were to (a) prepare and characterize pluronic lecithin organogels (PLO gels) of chlorpromazine hydrochloride using isopropyl palmitate or ricinoleic acid as the oil phase, (b) assess the in vitro percutaneous absorption of chlorpromazine hydrochloride through porcine ear and human abdominal skin using isopropyl palmitate and ricinoleic acid PLO gels, and (c) assess the theoretical plasma concentrations of chlorpromazine from flux values. PLO gels of chlorpromazine hydrochloride were successfully prepared using isopropyl palmitate or ricinoleic acid as the oil phase and characterized for pH, morphology, stability, viscosity, thermal analysis using differential scanning calorimetry (DSC), in vitro drug release and stability. In vitro permeability studies were performed across pig ear and human abdominal skin using isopropyl palmitate PLO gel and compared with the ricinoleic acid PLO gel. The pH and viscosity of both PLO gels prepared with isopropyl palmitate and ricinoleic acid iv were comparable. The thixotropic property of ricinoleic acid PLO gel was found to be better than the isopropyl palmitate PLO gel. Both formulations were found to be stable at 25ºC, 35ºC, and 40ºC for up to 60 days. The permeation of chlorpromazine hydrochloride was higher from ricinoleic acid PLO gel than isopropyl palmitate PLO gel and pure drug solution. Theoretical steady state plasma concentrations (Css) of chlorpromazine from pure drug solution, isopropyl palmitate PLO gel and ricinoleic acid PLO gel were found to be 1.05, 1.20, and 1.50 ng/ml. PLO gels only marginally increased the flux and theoretical Css of chlorpromazine. However, theoretical Css values for chlorpromazine were much below the required therapeutic concentration for antiemetic activity in hospice patients. From this study it is clearly evident that PLO gels fail to deliver the required systemic levels of chlorpromazine following topical application. To achieve better chlorpromazine hydrochloride skin permeation and thus higher concentrations of chlorpromazine in plasma, following topical application on the skin, efficient permeation enhancers should be used.
... Studies have found hospice benefits for patients with advanced dementia include a lower probability of hospitalization during last 30 days of life, 32 high probability of routine treatment of daily pain, 33 and greater patient and caregiver satisfaction with care over a usual care group. 34 Whether providing primary care, specialist care or specialty level palliative care, patients living with dementia should regularly be evaluated as to whether they are at the stage where hospice will benefit them and their caregivers. ...
... Hospice use is associated with better pain and symptom management, [20][21][22] and greater satisfaction with care. 23 Despite these benefits of hospice, recent evidence based on national data suggests that half of patients who are appropriate for hospice care die without receiving it. ...
Article
Background: We sought to examine sociodemographic and clinical characteristics present on admission to HHC associated with discharge to hospice. Methods: We used a 5% random sample of 2017 national Outcome and Assessment Information Set (OASIS) data. A Cox proportional hazards regression model was estimated for the primary outcome (discharge to hospice) to examine the associations with sociodemographic and clinical characteristics of HHC patients. Results: Among 489, 230 HHC patients, 4268 were discharged to hospice. The median (interquartile range) length of HHC stay for patients discharged to hospice care was 33 (14-78) days. Compared to White patients, Black, Hispanic, and other race, (hazard ratio [HR] = .50 [95% confidence interval, CI = .44–.57]), (HR = .53 [95% CI = .46–.62]), and (HR = .49 [95% CI = .40–.61], respectively) was associated with shorter time to discharge to hospice care. Clinical characteristics including severe dependence in activities of daily (ADL) (HR = 1.68 [95% CI = 1.01–2.78]), cognitive impairment (HR = 1.10 [95% CI = 1.01–1.20]), disruptive behavior daily (HR = 1.11 [95% CI = 1.02–1.22]), and inability to feed oneself (HR = 4.78, 95% CI = 4.30, 5.31) was associated with shorter time to discharge to hospice. Symptoms of anxiety daily (HR = 1.55 [95% CI = 1.43–1.68]), and pain daily or all the time (HR = 1.54 [95% CI = 1.43–1.64]) were associated with shorter time to discharge to hospice. Conclusions: High symptom burden, ADL dependency, and cognitive impairment on admission to HHC services was associated with greater likelihood of discharge to hospice.
... 1,9,10 Another area of concern in NH care is that transitions to hospice occur less frequently than many consider appropriate, even though residents receiving hospice have better pain management and their families' satisfaction with care is higher. 11,12 Although the prevalence of hospice use in NHs has increased significantly in the past 10 years, 13 the overall rates of hospice use remain relatively low. Most hospice enrollees receive such care very late in their illness, 14 and substantial variations in use across facilities and states persist. ...
Article
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Background/objective: Nursing homes (NHs) are an important setting for the provision of palliative and end-of-life (EOL) care. Excessive reliance on hospitalizations at EOL and infrequent enrollment in hospice are key quality concerns in this setting. We examined the association between communication-among NH providers and between providers and residents/family members-and two EOL quality measures (QMs): in-hospital deaths and hospice use. Design and methods: We developed two measures of communication by using a survey tool implemented in a random sample of U.S. NHs in 2011-12. Using secondary data (Minimum Data Set, Medicare, and hospice claims), we developed two risk-adjusted quality metrics for in-hospital death and hospice use. In the 1201 NHs, which completed the survey, we identified 54,526 residents, age 65+, who died in 2011. Psychometric assessment of the two communication measures included principal factor and internal consistency reliability analyses. Random-effect logistic and weighted least-square regression models were estimated to develop facility-level risk-adjusted QMs, and to assess the effect of communication measures on the quality metrics. Results: Better communication with residents/family members was statistically significantly (p = 0.015) associated with fewer in-hospital deaths. However, better communication among providers was significantly (p = 0.006) associated with lower use of hospice. Conclusions: Investing in NHs to improve communication between providers and residents/family may lead to fewer in-hospital deaths. Improved communication between providers appears to reduce, rather than increase, NH-to-hospice referrals. The actual impact of improved provider communication on residents' EOL care quality needs to be better understood.
... The use of palliative and hospice care in nursing homes (NHs) is associated with better pain and symptom management, optimal medication use, reduced hospitalization, and less aggressive care near death, as well as improved family satisfaction with care. [11][12][13][14][15][16] There is a paucity of literature addressing the benefits of hospice and palliative care in patients with morbid obesity. The role of palliative care in adults with obesity was first introduced in 2009. ...
Article
http://deepblue.lib.umich.edu/bitstream/2027.42/174118/2/altcDewarMontagnini.pdf
Article
Background: Despite the documented benefits of palliative and hospice care on improving patients' quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients' and caregivers' lack of knowledge and misperceptions. Objectives: To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults. Design: Cross-sectional study. Subjects: New York State residents ≥18 years old who participated in the 2016 Empire State Poll. Outcomes measured: Palliative and hospice care awareness, misperceptions, and receptivity. Results: Of the 800 participants, 664 (83%) and 216 (27%) provided a definition of hospice care and palliative care, respectively. Of those who defined hospice care, 399 (60%) associated it with end-of-life care, 89 (13.4%) mentioned it was comfort care, and 35 (5.3%) reported hospice care provides care to patients and families. Of those who defined palliative care (n = 216), 57 (26.4%) mentioned it provided symptom management to patients, 47 (21.9%) stated it was comfort care, and 19 (8.8%) reported it was applicable in any course of an illness. Of those who defined hospice or palliative care, 248 (37.3%) had a misperception about hospice care and 115 (53.2%) had a misperception about palliative care. Conclusions: Most community-dwelling adults did not mention the major components of palliative and hospice care in their definitions, implying a low level of awareness of these services, and misinformation is common among community-dwelling adults. Palliative and hospice care education initiatives are needed to both increase awareness of and reduce misperceptions about these services.
Article
Objectives: A comorbid diagnosis of cancer and dementia (cancer–dementia) may have unique implications for patient cancer-related experience. The objectives were to estimate prevalence of cancer–dementia and related experiences of people with dementia, their carers and cancer clinicians including cancer screening, diagnosis, treatment and palliative care. Method: Databases were searched (CINAHL, Psychinfo, Medline, Embase, BNI) using key terms such as dementia, cancer and experience. Inclusion criteria were as follows: (a) English language, (b) published any time until early 2016, (c) diagnosis of cancer–dementia and (d) original articles that assessed prevalence and/or cancer-related experiences including screening, cancer treatment and survival. Due to variations in study design and outcomes, study data were synthesised narratively. Results: Forty-seven studies were included in the review with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studies reported varied cancer–dementia prevalence rates (range 0.2%–45.6%); the others reported reduced likelihood of receiving: cancer screening, cancer staging information, cancer treatment with curative intent and pain management, compared to those with cancer only. The findings indicate poorer cancer-related clinical outcomes including late diagnosis and higher mortality rates in those with cancer–dementia despite greater health service use. Conclusions: There is a dearth of good-quality evidence investigating the cancer–dementia prevalence and its implications for successful cancer treatment. Findings suggest that dementia is associated with poorer cancer outcomes although the reasons for this are not yet clear. Further research is needed to better understand the impact of cancer–dementia and enable patients, carers and clinicians to make informed cancer-related decisions.
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There are more persons in the United States than ever before who are over 65 years of age. Many of America's elders will age and die in settings outside their homes, such as nursing homes or assisted living facilities. How nursing homes and assisted living facilities care for older persons over time has evolved to meet the needs of their residents. With people living longer and experiencing multiple and complex chronic conditions, providing late-life supportive care and end-of-life care that are individualized and at the same time meet the needs of entire communities and populations is challenging. End-of-life care in residential facilities is often influenced by organizational and governmental bureaucracies, differing understandings and perspectives surrounding life-prolonging treatment, the quality of palliative care and hospice care, and the individuality of the dying experience. Research into and study of late life and death in the community offers insights into what is foundational for best practices in end-of-life care.
Article
With the geriatric population in the United States growing rapidly, the prevalence of dementia is expected to rise concomitantly. As dementia is an invariably progressive and terminal illness, planning for and managing end of life care in dementia is an important part of the overall process of dementia care. Unfortunately, this is often neglected outside of formal palliative and hospice medicine training programs and geriatric psychiatrists are left without preparation on how to manage, as well as counsel patients and families on, this important phase of dementia care. This review aims to explore the potential contributors to this historic disparity in geriatric education and care delivery, as well as its impact, while also attempting to shift the field's focus toward a palliative approach to dementia care. To begin to accomplish this, this review explores the natural illness history/disease trajectory of the various dementing illnesses, as well as the topic of prognostication as it pertains to the end of life for patients with dementia and how this information can be used in advanced care planning and symptom management.
Article
This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality rates, costs of care, and the overall impact on caregivers and society. The Special Report examines how the use of biomarkers may influence the AD diagnostic process and estimates of prevalence and incidence of the disease. An estimated 5.5 million Americans have Alzheimer's dementia. By mid-century, the number of people living with Alzheimer's dementia in the United States is projected to grow to 13.8 million, fueled in large part by the aging baby boom generation. Today, someone in the country develops Alzheimer's dementia every 66 seconds. By 2050, one new case of Alzheimer's dementia is expected to develop every 33 seconds, resulting in nearly 1 million new cases per year. In 2014, official death certificates recorded 93,541 deaths from AD, making AD the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age ≥65 years. Between 2000 and 2014, deaths resulting from stroke, heart disease, and prostate cancer decreased 21%, 14%, and 9%, respectively, whereas deaths from AD increased 89%. The actual number of deaths to which AD contributes is likely much larger than the number of deaths from AD recorded on death certificates. In 2017, an estimated 700,000 Americans age ≥65 years will have AD when they die, and many of them will die because of the complications caused by AD. In 2016, more than 15 million family members and other unpaid caregivers provided an estimated 18.2 billion hours of care to people with Alzheimer's or other dementias. This care is valued at more than $230 billion. Average per-person Medicare payments for services to beneficiaries age ≥65 years with Alzheimer's or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2017 for health care, long-term care, and hospice services for people age ≥65 years with dementia are estimated to be $259 billion. In recent years, efforts to develop and validate AD biomarkers, including those detectable with brain imaging and in the blood and cerebrospinal fluid, have intensified. Such efforts could transform the practice of diagnosing AD from one that focuses on cognitive and functional symptoms to one that incorporates biomarkers. This new approach could promote diagnosis at an earlier stage of disease and lead to a more accurate understanding of AD prevalence and incidence.
Article
Prior studies estimate that >40% of long-stay nursing home (NH) residents experience persistent pain, with 20% of residents in pain receiving no analgesics. Strengthened NH surveyor guidance and improved pain measures on the Minimum Data Set (MDS) 3.0 were introduced in March 2009 and October 2010, respectively. This study aimed to provide estimates after these important initiatives of: 1) prevalence and correlates of persistent pain; and 2) prevalence and correlates of untreated or undertreated persistent pain.We identified 1,387,405 long-stay residents in United States NHs between 2011-2012 with 2 MDS assessments 90 days apart. Pain was categorized as persistent (pain on both assessments), intermittent (pain on either assessment), or none. Pharmacologic pain management was classified as untreated pain (no scheduled or as needed medications received) or potentially undertreated (no scheduled received). Modified Poisson models adjusting for resident clustering within NHs provided adjusted prevalence ratios estimates (APR) and 95% confidence intervals (CI).The prevalence of persistent and intermittent pain was 19.5% and 19.2% respectively but varied substantially by age, gender, race/ethnicity, cognitive impairment, and cancer. Of residents in persistent pain, 6.4% and 32.0% were untreated or undertreated. Racial/ethnic minorities (non-Hispanic blacks vs. whites, APR=1.19, 95% CI: 1.13-1.25) and severely cognitively impaired residents (severe vs. no/mild APR=1.51, 95% CI: 1.44-1.57) had an increased prevalence of untreated and undertreated pain.One in five NH residents has persistent pain. Although this estimate is greatly improved, many residents may be undertreated. The disturbing disparities in untreated and undertreated pain need to be addressed.
Article
Background/Aims Nursing homes are complex healthcare systems serving an increasingly sick population. Nursing homes must engage patients in advance care planning, but do so inconsistently. Video decision support tools improved advance care planning in small randomized controlled trials. Pragmatic trials are increasingly employed in health services research, although not commonly in the nursing home setting to which they are well-suited. This report presents the design and rationale for a pragmatic cluster randomized controlled trial that evaluated the “real world” application of an Advance Care Planning Video Program in two large US nursing home healthcare systems. Methods PRagmatic trial Of Video Education in Nursing homes was conducted in 360 nursing homes (N = 119 intervention/N = 241 control) owned by two healthcare systems. Over an 18-month implementation period, intervention facilities were instructed to offer the Advance Care Planning Video Program to all patients. Control facilities employed usual advance care planning practices. Patient characteristics and outcomes were ascertained from Medicare Claims, Minimum Data Set assessments, and facility electronic medical record data. Intervention adherence was measured using a Video Status Report embedded into electronic medical record systems. The primary outcome was the number of hospitalizations/person-day alive among long-stay patients with advanced dementia or cardiopulmonary disease. The rationale for the approaches to facility randomization and recruitment, intervention implementation, population selection, data acquisition, regulatory issues, and statistical analyses are discussed. Results The large number of well-characterized candidate facilities enabled several unique design features including stratification on historical hospitalization rates, randomization prior to recruitment, and 2:1 control to intervention facilities ratio. Strong endorsement from corporate leadership made randomization prior to recruitment feasible with 100% participation of facilities randomized to the intervention arm. Critical regulatory issues included minimal risk determination, waiver of informed consent, and determination that nursing home providers were not engaged in human subjects research. Intervention training and implementation were initiated on 5 January 2016 using corporate infrastructures for new program roll-out guided by standardized training elements designed by the research team. Video Status Reports in facilities’ electronic medical records permitted “real-time” adherence monitoring and corrective actions. The Centers for Medicare and Medicaid Services Virtual Research Data Center allowed for rapid outcomes ascertainment. Conclusion We must rigorously evaluate interventions to deliver more patient-focused care to an increasingly frail nursing home population. Video decision support is a practical approach to improve advance care planning. PRagmatic trial Of Video Education in Nursing homes has the potential to promote goal-directed care among millions of older Americans in nursing homes and establish a methodology for future pragmatic randomized controlled trials in this complex healthcare setting.
Article
Context: Pain management is suboptimal in nursing homes. Objectives: To estimate the extent to which receipt of hospice in nursing homes (NH) increases the receipt of pain management for residents with cancer at the end-of-life. Methods: Study participants included Medicare beneficiaries with cancer who were NH residents in the last 90 days of life in 2011-2012 (n=78,160). Residents in pain on hospice were matched to like residents without hospice by facility, type of pain assessment (self-report/staff assessment), and weeks until death (9,064 matched strata, 16,968 unique residents. Minimum Data Set 3.0 provided information on residents' pain prevalence and receipt of pain management (scheduled analgesics, as needed [PRN] medication, non-pharmacologic interventions). We developed conditional logistic models to estimate the association between hospice use and pain management, stratified by self-reported and staff-assessed pain. Results: We found that pain prevalence was higher in residents using hospice versus those without hospice (e.g. residents who self-reported pain: hospice: 59.9%, 95% Confidence Intervals (CI)=59.3-60.5%; non-hospice: 50.0%, 95% CI=49.4-50.6%). In matched analyses, untreated pain was uncommon (self-reported pain: 2.9% and 5.6% in hospice users and non-users, respectively. Hospice use was associated with receipt of scheduled analgesics (self-reported: adjusted Odds Ratio (aOR) =1.85, 95% CI=1.73-1.971and PRN medication (self-reported: aOR=1.31, 95% CI=1.20-1.43). Pain prevalence and the association between hospice and pain management were similar in residents with staff-assessed pain. Conclusion: Untreated pain at the end-of-life among residents with cancer in NHs is unusual. Hospice is associated with increased pain management among those with documented pain.
Article
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Background: Dementia is a progressive and incurable disease which presents many challenges to care providers, particularly in terms of end-of-life care. A palliative approach; that is an approach to care which seeks to ease burdensome symptoms without attempting curative treatment, has been suggested as the most appropriate framework for addressing the needs of these people. Objectives: The overall objective was to establish best practice in relation to palliative care for people with advanced dementia in terms of effectiveness and appropriateness. Search strategy: The search strategy aimed to find both published and unpublished English language studies, published between 1997 and 2009. A three-step search strategy was utilised in each component of this review. Critical appraisal: Quantitative, qualitative and discursive text articles were included in this review. Articles were assessed for congruence to the review criteria and then critically appraised for quality using the appropriate JBI tool. Data collection and analysis: Data were extracted using the appropriate JBI data extraction tool for each methodology. No quantitative meta-analysis was possible due to clinical and statistical heterogeneity. Qualitative synthesis was performed with the JBI QARI tool. Discursive textual synthesis was performed with the JBI NOTARI tool. Results: Quantitative studies recommended the use of do not resuscitate, do not hospitalise orders and other forms of advance directives to prevent interventions unwanted by the patient and/or their family. Feeding tubes and the use of intravenous antibiotics were not found to be an effective intervention. Interventions designed to treat the burdensome symptoms of advanced dementia (such as pain and agitation) were found to be of the most benefit to patients.Qualitative analysis found it distressing for families to discuss or plan for, a poor quality of life for their loved one during the process of dying. Decisions concerned with palliative treatment for the person with advanced dementia were found to be complicated by knowledge differences, lack of understanding of the disease trajectory of dementia, the unpredictable nature of dementia itself and religious and socio-economical issues. Textual analysis found that a palliative approach to end of life care in advanced dementia is both appropriate and effective in terms of benefit to patients and their significant others.Despite the large volume of data retrieved and analysed for this review, no studies examining the role of case-conferencing for managing the introduction of palliative care or managing a palliative approach met the inclusion criteria for this systematic review. Implications for practice: IMPLICATIONS FOR FUTURE RESEARCH: There is a need for further studies in the area of palliation and advanced dementia, particularly high quality studies investigating palliative care case conferencing and other methods of arranging and planning end of life care for people with dementia. Conclusion: There is some evidence to suggest that a palliative approach is both effective and appropriate for use with people who have advanced dementia. There is no evidence for or against the use of case-conferencing as a method of arranging care for people with advanced dementia.
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Doña Barbara never had a chance to save for old age. She and her husband are subsistence farmers living in the high plains of Bolivia. Doña Barbara is entitled to a small annual pension, but she has no birth certificate, so has not been able to make a claim. Doña Barbara and her husband have stomach pains because of their poor diet. Health is a constant worry. They are entitled to free healthcare but there are no doctors within reach. Their daughters help when they can, but they live far away from them (HelpAge International 2006).
Article
Background: With increasing use of the Medicare hospice benefit, policymakers recognize the need for quality measurement to assure that terminally ill patients receive high quality care and have the information they need when selecting a hospice. Towards these goals, CMS has been collecting standardized patient-level quality data via the Hospice Item Set (HIS) since July 1, 2014. Objectives: This article presents a first look at the national hospice HIS quality data. Research design: We calculated seven quality measures using the HIS data. These measures are endorsed by the National Quality Forum and focus on important care processes hospice providers are required to perform at admission, including discussion of patient preferences regarding life-sustaining treatments; care for spiritual and existential concerns; and symptom management (pain, opioid-induced constipation and dyspnea). Results: Our sample included 1,218,786 hospice patients discharged from 3,922 hospices from 10/1/2014-9/30/2015. Over 90% of patients received screenings and assessments captured by six of the seven quality measures. The only exception was pain assessment, for which the national mean score was 78.2%. A small number of hospices (156, 4.0%) had perfect scores for all seven quality measures. Conclusions: Most hospices conduct critical assessments and discuss treatment preferences with patients at admission, although few hospices have perfect scores.
Article
Traditional models of palliative care are largely inaccessible to homeless persons, and their preferences regarding end-of-life care are poorly understood. The purpose of the present scoping review is to summarize the burgeoning gray and academic literature on end-of-life care for homeless persons. Five medical databases, seven social science databases, and four gray literature databases were searched, resulting in 57 relevant titles. Six themes emerged: (a) Characteristics of homeless persons who require end-of-life care; (b) preferences and concerns of homeless persons approaching the end of life; (c) the role of spirituality for homeless persons at the end of life; (d) barriers to care at the patient, provider, and institutional or structural levels; (e) inclusive models of palliative care; and (f) implications for policy and practice. Practitioners and homeless persons must negotiate many obstacles in the provision and receipt of palliative care. However, there is tremendous potential and opportunity to improve the quality of life at the end of life for this vulnerable population.
Article
Aims and objectives: To examine and map research on minimum data sets linked to nursing practice and the fundamentals of care. Another aim was to identify gaps in the evidence to suggest future research questions to highlight the need for standardisation of terminology around nursing practice and fundamental care. Background: Addressing fundamental care has been highlighted internationally as a response to missed nursing care. Systematic performance measurements are needed to capture nursing practice outcomes. Design: Overview of the literature framed by the scoping study methodology. Method: PubMed and CINAHL were searched using the following inclusion criteria: Peer-reviewed empirical quantitative and qualitative studies related to minimum data sets and nursing practice and, published in English. No time restrictions were set. Exclusion criteria: no available full text, reviews and methodological and discursive studies. Data were categorised into one of the fundamentals of care elements. Results: The review included 20 studies published in 1999-2016. Settings were mainly nursing homes or hospitals. Of 14 elements of the fundamentals of care, 11 were identified as measures in the included studies, but their frequency varied. The most commonly identified elements concerned safety, prevention, and medication (n = 11), comfort (n = 6), and eating and drinking (n = 5). Conclusion: Studies have used minimum data sets and included variables linked to nursing practices and fundamentals of care. However, the relations of these variables to nursing practice were not always clearly described and the main purpose of the studies was seldom to measure the outcomes of nursing interventions. More robust studies focusing on nursing practice and patient outcomes are warranted. This article is protected by copyright. All rights reserved.
Article
Background A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life. Aim The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision. Design A scoping review following Arskey and O’Malley’s framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018. Data Sources We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life. Results A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) ‘inappropriate’ medications. Conclusion Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life.
Article
Context End-of-Life (EOL) care consumes a substantial amount of healthcare resources, especially among older persons with cancer. Having Alzheimer's Disease and Related Dementias (ADRD) brings additional complexities to these patients’ EOL care. Objectives To examine the Medicare expenditures at the EOL (last twelve months of life) among beneficiaries having cancer and ADRD versus those without ADRD. Methods A retrospective cohort study used 2004-2016 Surveillance, Epidemiology, and End Results-Medicare data. Patient populations were deceased Medicare beneficiaries with cancer (breast, lung, colorectal, and prostate) and continuously enrolled for 12 months before death. Beneficiaries with ADRD were propensity score matched with non-ADRD counterparts. Generalized Estimating Equation Model was deployed to estimate monthly Medicare expenditures. Generalized Linear Models were constructed to assess total EOL expenditures. Results 86,396 beneficiaries were included (43,198 beneficiaries with ADRD and 43,198 beneficiaries without ADRD). Beneficiaries with ADRD utilized $64,901 at the EOL, which was roughly $407 more than those without ADRD ($64,901 vs. $64,494, p=0.31). Compared to beneficiaries without ADRD, those with ADRD had 11% higher monthly expenditure and 7% higher in total expenditures. Greater expenditure was incurred on inpatient (5%), skilled nursing facility (SNF) (119%), home health (42%), and hospice (44%) care. Conclusion Medicare spending at the EOL per beneficiary was not statistically different between cohorts. However, specific types of service (i.e., inpatient, SNF, home health, and hospice) were significantly higher in the ADRD group compared to their non-ADRD counterparts. This study underscored the potential financial burden and informed Medicare about allocation of resources at the EOL.
Article
The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.
Article
Background: In patients with serious illness, use of specialist palliative care may result in improved quality of life, patient and caregiver satisfaction and advance care planning, as well as lower health care utilization. However, evidence of efficacy is limited for patients with dementia, particularly in the setting of an acute hospitalization. Objective: To determine whether implementation of hospital-based specialist palliative care was associated with differences in treatment intensity outcomes for hospitalized patients with dementia. Design: Retrospective cohort study. Setting: Fifty-one hospitals in New York State that either did or did not implement a palliative care program between 2008 and 2014. Hospitals that consistently had a palliative care program during the study period were excluded. Participants: Hospitalized patients with dementia. Measurements: The primary outcome of this study was discharge to hospice from an acute hospitalization. Secondary outcomes included hospital length of stay, use of mechanical ventilation and dialysis, and days in intensive care. Difference-in-difference analyses were performed using multilevel regression to assess the association between implementing a palliative care program and outcomes, while adjusting for patient and hospital characteristics and time trends. Results: During the study period, 82,118 patients with dementia (mean (SD) age, 83.04 (10.04), 51,170 (62.21%) female) underwent an acute hospitalization, of which 41,227 (50.27%) received care in hospitals that implemented a palliative care program. In comparison to patients who received care in hospitals without palliative care, patients with dementia who received care in hospitals after the implementation of palliative care were more 35% likely to be discharged to hospice (adjusted odds ratio (aOR) = 1.35 (1.19-1.51), P < .001). No meaningful differences in secondary outcomes were observed. Conclusion: Implementation of a specialist palliative care program was associated with an increase in discharge to hospice following acute hospitalization in patients with dementia.
Article
The Physician Orders for Life-Sustaining Treatment (POLST) program was developed to enhance quality of care delivered at End-of-Life (EoL). Although positive impacts of the POLST program have been identified, the association between a program maturity status and nursing home resident's likelihood of dying in their current care settings remain unanswered. This study aims to evaluate the impact of the POLST program maturity status on nursing home residents' place of death. Using multiple national-level datasets, we examined total 595,152 residents and their place of death. The result showed that the long-stay residents living in states where the program was mature status had 12% increased odds of dying in nursing homes compared that of non-conforming status. Individuals residing in states with developing program status showed 11% increase in odds of dying in nursing homes. The findings demonstrate that a well-structured and well-disseminated POLST program, combined with a continued effort to meet high standards of quality EoL care, can bring out positive health outcomes for elderly patients residing in care settings.
Article
BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States. PARTICIPANTS A total of 1,868 NHATS decedents. MEASUREMENTS Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self‐reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0–4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness.
Article
This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the future challenges of meeting care demands for the growing number of people living with Alzheimer's dementia in the United States with a particular emphasis on primary care. By mid‐century, the number of Americans age 65 and older with Alzheimer's dementia may grow to 13.8 million. This represents a steep increase from the estimated 5.8 million Americans age 65 and older who have Alzheimer's dementia today. Official death certificates recorded 122,019 deaths from AD in 2018, the latest year for which data are available, making Alzheimer's the sixth leading cause of death in the United States and the fifth leading cause of death among Americans age 65 and older. Between 2000 and 2018, deaths resulting from stroke, HIV and heart disease decreased, whereas reported deaths from Alzheimer's increased 146.2%. In 2019, more than 16 million family members and other unpaid caregivers provided an estimated 18.6 billion hours of care to people with Alzheimer's or other dementias. This care is valued at nearly $244 billion, but its costs extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2020 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $305 billion. As the population of Americans living with Alzheimer's dementia increases, the burden of caring for that population also increases. These challenges are exacerbated by a shortage of dementia care specialists, which places an increasing burden on primary care physicians (PCPs) to provide care for people living with dementia. Many PCPs feel underprepared and inadequately trained to handle dementia care responsibilities effectively. This report includes recommendations for maximizing quality care in the face of the shortage of specialists and training challenges in primary care.
Article
Objectives: To examine variation in reported experiences with hospice care by setting. Design: Consumer Assessment of Healthcare Providers and Systems Hospice (CAHPS®) Survey data from 2016 were analyzed. Multivariate linear regression analysis was used to examine differences in measure scores by setting of care (home, nursing home [NH], hospital, freestanding hospice inpatient unit [IPU], and assisted living facility [ALF]). Setting: A total of 2636 US hospices. Participants: A total of 311 635 primary caregivers of patients who died in hospice. Measurements: Outcomes were seven hospice quality measures, including five composite measures that assess aspects of hospice care important to patients and families, including hospice team communication, timeliness of care, treating family member with respect, symptom management, and emotional and spiritual support, and two global measures of the overall rating of the hospice and willingness to recommend it to friends and family. Analyses were adjusted for mode of survey administration and differences in case-mix between hospices. Results: Caregivers of decedents who received hospice care in a NH reported significantly worse experiences than caregivers of those in the home for all measures. ALF scores were also significantly lower than home for all measures, except providing emotional and spiritual support. Differences in NH and ALF settings compared to home were particularly large for hospice team communication (ranging from -11 to -12 on a 0-100 scale) and getting help for symptoms (ranging from -7 to -10). Consistently across all care settings, hospice team communication, treating family member with respect, and providing emotional and spiritual support were most strongly associated with overall rating of care. Conclusions: Important opportunities exist to improve quality of hospice care in NHs and ALFs. Quality improvement and regulatory interventions targeting the NH and ALF settings are needed to ensure that all hospice decedents and their family receive high-quality, patient- and family-centered hospice care.
Chapter
Nursing homes are an important part of the healthcare system. People residing in nursing homes are generally classified as being short stay, such as for rehabilitation or reconditioning after surgery or illness, or long stay, meaning they and their families are no longer able to meet their needs at home. Dementia and behavior challenges are common in that population. Nursing home staff consists of nurses, physical and occupational therapists, social workers, physicians and nurse practitioners, and administrators. Nursing homes are highly regulated environments and are subjected to government oversight, which is in response to long-standing concerns about quality of care in these facilities. Nursing home care is now incorporated into the healthcare system and costs $175 billion a year, payed mostly by Medicaid, though Medicare will cover some short-term care. Innovation in long-term care includes new models of care, professionalization of staff, ensuring the needed workforce, and ongoing efforts to improve the quality of care. New payment models may include reimbursement systems that are a better fit for long-term care.
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Violation or neglect of human rights jeopardizes health by interfering with physical, mental, and social well-being. This chapter considers the relevance of human rights to public health as legal standards and obligations of governments, as a conceptual framework of analysis and advocacy, and as guiding principles for designing and implementing policies and programs. It recommends institutionalizing perspectives on social justice and human rights in all health-sector actions, monitoring implications of policies in all sectors that affect health, and building public consensus for equitable financing of healthcare. The authors assert that human rights principles provide a framework that can guide health workers and others in achieving social justice in health and that health workers should be aware that human rights norms, standards, laws, and accountability mechanisms are relevant tools to help achieve social justice in health. A text box focuses on promoting the rights of “undocumented immigrants” in the United States.
Article
Background: Casarett et al. tested an intervention to improve timeliness of referrals to hospice. Although efficacious in the nursing home setting, it was not tested in other settings of care for seriously ill patients. We, therefore, adapted Casarett's intervention for use in home health (HH). Objective: To assess feasibility, acceptability, and patient outcomes of the adapted intervention. Design: We conducted a nine-week observational pilot test. Setting/Subjects: We conducted our pilot study with two HH agencies. Eligible patients included those who were high risk or frail (identified by the agencies' analytic software as being moderate to high risk for hospitalization or a candidate for hospice referral). Clinical managers identified eligible patients and registered nurses then delivered the intervention, screening patients for hospice appropriateness by asking about care goals, needs, and preferences and initiating appropriate follow-up for patients who screened positive. Measurements: We collected quantitative data on patient enrollment rates and outcomes (election of hospice and/or palliative care). We collected qualitative data on pilot staff experience with the intervention and suggestions for improvement. Results: Pilot HH agencies were able to implement the intervention with high fidelity with minimal restructuring of workflows; 14% of patients who screened positive for hospice appropriateness elected hospice or palliative care. Conclusions: Our findings suggest the adapted intervention was feasible and acceptable to enhance timeliness of hospice and palliative care referral in the HH setting. Additional adaptations suggested by pilot participants could improve impact of the intervention.
Article
Homeless persons have higher burden of disease and mortality rates than the housed population; however, traditional models of palliative care are inaccessible to many dying homeless persons. There is a dearth of literature on the palliative needs and preferences of homeless persons and effective palliative care interventions for this population. A scoping review was undertaken to examine the literature regarding the deployment of palliative care services for homeless persons. Five medical databases, seven social science databases, and four grey literature databases were searched under the guidance of two University of Toronto librarians to identify literature on palliative care for homeless persons. The search resulted in 68 relevant titles. Six main themes emerged from the review: 1) characteristics of homeless persons who required end-of-life care; 2) preferences and concerns of homeless persons approaching end-of-life; 3) the role of spirituality for homeless persons at end-of-life; 4) barriers to care at the patient, provider and institutional/structural levels; 5) inclusive models of palliative care; and 6) implications for policy and practice at end-of-life. Homeless persons face considerable barriers to accessing appropriate end-of-life care. Several areas of improvement were identified for care providers and policymakers. Future research should focus on evaluating the effectiveness and financial viability of models of care, the perspectives of homeless persons regarding palliative care, and the unique needs and preferences of cultural and ethnic minority homeless populations.
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Supportive care is as important as therapy to modify the course of cancer irrespective of the possible outcomes and includes symptom control, psychosocial support and rehabilitation. A subset of supportive care is palliative care, in cases where anticipated life is shortened as a result of cancer. Another subset of palliative care is terminal care in which the goal is to comfort the dying person, as at this time nothing can change the course of the disease. This chapter attempts at introducing various concepts important and relevant in palliative services and supportive care in cancer patients.
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Most people now die from chronic diseases. Attitudes and practices toward care as people near the end of life have changed dramatically over the past decades. Public advocacy and interest in self-determination have led to laws and policies that allow patients to indicate their wishes regarding end-of-life care. The medical community has responded, and end-of-life care has matured and been professionalized with the emphasis on compassionate and timely care. Determining when it is time to shift from curative efforts to an approach that focuses on comfort and quality of life is often not clear, and palliative care has evolved to include symptom relief while patients are still receiving curative treatment, allowing for a gradual transition in the focus of care. New quality metrics set a standard of excellence in practicing end-of-life care. Financing of end-of-life care continues to evolve. Populations such as children, patients with dementia, or those without the cognitive ability to make decisions require special consideration. Future initiatives in end-of-life care will focus on workforce preparedness, alternative financing models, innovations in electronic medical records, and support for the health-care workforce who serve the growing population of people who die from chronic diseases.
Article
Pain in nursing homes remains underassessed, underreported and undertreated, consequently, becoming a growing concern in the United States. The purpose of this inquiry is to review the current evidence guiding the management of chronic non-malignant pain among nursing home residents. Twelve articles relevant to this topic were obtained from a search of the electronic databases PubMed and Cumulative Index of Nursing and Allied Health (CINAHL). Findings underscore an urgent need to improve assessment, documentation, and management of pain in nursing home residents.
Article
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Context.— Cancer pain can be relieved with pharmacological agents as indicated by the World Health Organization (WHO). All too frequently pain management is reported to be poor.Objective.— To evaluate the adequacy of pain management in elderly and minority cancer patients admitted to nursing homes.Design.— Retrospective, cross-sectional study.Setting.— A total of 1492 Medicare-certified and/or Medicaid-certified nursing homes in 5 states participating in the Health Care Financing Administration's demonstration project, which evaluated the implementation of the Resident Assessment Instrument and its Minimum Data Set.Study Population.— A group of 13625 cancer patients aged 65 years and older discharged from the hospital to any of the facilities from 1992 to 1995. Data were from the multilinked Systematic Assessment of Geriatric Drug Use via Epidemiology (SAGE) database.Main Outcome Measures.— Prevalence and predictors of daily pain and of analgesic treatment. Pain assessment was based on patients' report and was completed by a multidisciplinary team of nursing home personnel that observed, over a 7-day period, whether each resident complained or showed evidence of pain daily.Results.— A total of 4003 patients (24%, 29%, and 38% of those aged ≥85 years, 75 to 84 years, and 65 to 74 years, respectively) reported daily pain. Age, gender, race, marital status, physical function, depression, and cognitive status were all independently associated with the presence of pain. Of patients with daily pain, 16% received a WHO level 1 drug, 32% a WHO level 2 drug, and only 26% received morphine. Patients aged 85 years and older were less likely to receive either weak opiates or morphine than those aged 65 to 74 years (13% vs 38%, respectively). More than a quarter of patients (26%) in daily pain did not receive any analgesic agent. Patients older than 85 years in daily pain were also more likely to receive no analgesia (odds ratio [OR], 1.40; 95% confidence interval [CI], 1.13-1.73). Other independent predictors of failing to receive any analgesic agent were minority race (OR, 1.63; 95% CI, 1.18-2.26 for African Americans), low cognitive performance (OR, 1.23; 95% CI, 1.05-1.44), and the number of other medications received (OR, 0.65; 95% CI, 0.5-0.84 for 11 or more medications).Conclusions.— Daily pain is prevalent among nursing home residents with cancer and is often untreated, particularly among older and minority patients. Figures in this Article THE PREVALENCE OF cancer increases with age,1 and pain is one of cancer's most frequent and disturbing symptoms.2 Despite the widespread dissemination of the World Health Organization's (WHO's) 3-level ladder,3 and the demonstration that its appropriate use can relieve pain in more than 90% of cases,4- 5 pain management remains poor. A high prevalence of unrelieved cancer pain has been documented in a variety of clinical settings, including general medical and surgical units,6 oncology wards,7 emergency departments,8 and pediatric wards.9 Even in oncology outpatient clinics, the management of pain falls well below accepted standards.10- 11 Although there is no physiologic basis for a decrease in pain with increasing age, pain is believed to be less prevalent among the aged and is historically underreported and undertreated. While the WHO ladder approach is applicable to older patients with cancer,12 limited attention has been devoted to the management of pain in this age group. With hospital length of stay declining and the elderly segment of the population increasing, the role of nursing homes is expanding to provide both postacute care and rehabilitation.13 These trends are forcing more complex clinical care problems onto facilities that are still tainted by an image as the poorest-quality providers in the US health care system.14 Indeed, a new study reports that the prevalence of pain among nursing home patients has increased in recent years.15 Yet, data on the management of cancer pain in this population are lacking. This study characterizes the treatment of pain among nearly 15000 elderly cancer patients admitted to US nursing homes, and specifically examines independent predictors of pain and prescribed analgesics in elderly and minority patients.
Article
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To investigate the effect of dementia on response to pain, 51 community-dwelling, generally healthy, cognitively intact individuals > or = 65 years old and 44 community- or nursing home-dwelling persons > or = 65 years old with varying severity of dementia were studied. Cognitive status was assessed by standardized clinical evaluation and psychometric test performance. The following responses were measured before, during and after a standard venipuncture procedure: heart rate, the amplitude of respiratory sinus arrhythmia (RSA), self-reported anxiety and pain, and videotaped facial expressions. Although RSA did not differentiate procedural phases, in both samples, mean heart rate increased in the preparatory phase and decreased in the venipuncture phase. Independent of age, increasing severity of dementia was associated with blunting of physiologic response as measured by diminished heart rate increase in the preparatory phase and heart rate increase with venipuncture. Dementia significantly interfered with the subjects' ability to respond to direct questions about anxiety and pain. Those who were able to respond were relatively accurate self-assessors: higher anxiety was associated with greater magnitude heart rate responses. Facial expression was increased in demented individuals but it could not be classified by specific emotions. We conclude that dementia influences both the experience and reporting of pain in elderly individuals.
Article
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to establish whether there is a sub-group of patients suffering from senile dementia, Alzheimer-type (SDAT), who have ceased to undergo normal experience of pain. two single case studies are briefly described and a small-scale national survey by questionnaire is reported. combining the original two cases with those garnered from the survey yielded 49 cases of SDAT patients who failed to exhibit normal experience of pain. In none of the cases does there seem to have been any particular problem of emotional expression or of verbal communication, but pain reactions to accidents, surgical procedures, infections and pre-existing conditions seem to have been extinguished. such patients may form a theoretically interesting sub-group with particular neuroanatomical pathology. Recognition of the existence of such a group has important legal and ethical implications for those treating or caring for patients of this kind.
Article
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Because there is a lack of databases specific to long-term care, standardized assessments of nursing home residents are seen as a potential new resource for studying an important but neglected population. We describe the design and principal population characteristics of the first integrated database combining detailed clinical information and administrative claims data. We studied nearly 300,000 residents admitted between 1992 and 1994 to all Medicare/Medicaid certified nursing homes of five U.S. states (Kansas, Maine, Mississippi, New York, and South Dakota). The database crosslinks: (a) Resident Data: over 350 items (demographic, diagnostic, clinical, and treatments) collected with the Minimum Data Set; (b) Drug Data: brand name, dosage route, and frequency of administration for all drugs consumed by each resident; (c) Medicare Data: eligibility and inpatient hospital claims; (d) Facilities Data: structural and staffing information on nursing homes; and (e) Country Data: information on population, health professions and facility data, and economic parameters. Ninety-two percent of the residents were aged 65 years and older. Residents were predominantly white (85%) and female (72%). The average number of medical diagnoses was above three, and residents were receiving an average of six medications. Sixty-five percent of residents had at least one hospital claim following the initial assessment, most commonly related to cardiovascular diseases and metabolic disorders. Fifty-five percent of the facilities were for-profit and 33% were of small size. Quality indicators and staffing level varied significantly by state. The SAGE (Systematic Assessment of Geriatric drug use via Epidemiology) database provides a unique resource to study the relation between treatments received and outcomes experienced, particularly functional and health services outcomes, that have not been possible before in very old, frail people.
Article
On admission to a pain management unit, 92.5% of 174 cancer pain patients suffered from more than moderate pain despite prior treatment. This inefficacy was mainly due to underdosage of drugs, inadequate intake schedule, and hesitation to use strong opioids. Following introduction of an oral drug therapy based on World Health Organization (WHO) guidelines, more than 80% of all patients described their pain as ranging between "none" and "moderate" on a six-step verbal rating scale at all times. To obtain these results, it was necessary to adapt the therapy to increasing pain in the course of terminal disease. Step III (strong opioids) gained more and more importance with time, and step I (nonopioids) was finally useful only in a minority of patients. Side effects played a minor role as a reason to change therapy. Oral drug therapy following these guidelines led to sufficient pain control in most patients over the whole study period (7,400 days); only 11% of the patients required other methods of pain management.
Article
To the Editor: More than 1.5 million people in the United States reside in nursing homes and an estimated 43% of adults 65 years and older will enter a nursing home prior to death.1 Previous research using an early version of the Minimum Data Set (MDS), a nationally mandated nursing home resident assessment instrument, noted that daily pain was prevalent among nursing home residents diagnosed with cancer who had been discharged from a hospital, as well as among the residents of nursing homes in general.2 Prior research was restricted by a limited MDS pain frequency measure of "none" or "daily," but since 1998, information on both frequency (none, daily, or less than daily) and severity of pain (mild, moderate, or excruciating at times) has been collected. We report the rates of persistent severe pain among US nursing home residents by analyzing a national repository of MDS data, which represents all nursing home residents in all 50 states.
Article
Objectives. The Health Care Financing Administration requires that patients admitted to certified nursing homes be assessed with the Minimum Data Set, a data collection instrument containing more than 300 demographic, diagnostic, clinical, and treatment variables. Long-term care databases potentially may be used to assess the outcomes of specific treatments as well as drug effectiveness. The authors sought to ascertain reliability and validity of diagnostic and drug data in a database obtained by merging the Minimum Data Set with detailed information on drugs consumed by each resident. Methods. A population of 296,379 residents of 1,492 nursing homes in Kansas, Maine, Mississippi, New York, and South Dakota participated in the study between 1992 and 1994. Minimum Data Set clinical diagnoses were contrasted with selected resident characteristics and a variety of symptoms and treatments. Limited to individuals who had been hospitalized in the 6 months preceding the first assessment, Minimum Data Set diagnoses were compared with those on the hospital discharge claims maintained in the Medicare Provider Analysis and Review database. Finally, the probability that the use of selected drugs predicted the correspondent gender-specific, age-specific, or unique labeled indication was estimated. Results. The positive predictive value for Minimum Data Set diagnoses compared with gender or function measures exceeded 0.9, and it was 0.8 for specific symptoms and 0.6 for virtually all other comparisons. The positive predictive value for Minimum Data Set diagnoses compared with those from hospital claims was approximately 0.7 for all chronic medical conditions, except for depression and asthma/chronic obstructive pulmonary disease/emphysema. The positive predictive value for acute/subacute diagnoses (ie, pneumonia, urinary tract infection, anemia) that may resolve during hospital stay was less than 0.5. The positive predictive value for selected drugs, except estrogens, compared with age and gender was close to 1.0 in all cases. When compared to their labeled indication, the positive predictive value was more than 0.6 for all drugs considered, with 0.97, 0.91, and 0.87 for tacrine and Alzheimer's disease, antidiabetics and diabetes mellitus, and L-dopa and Parkinson's disease, respectively. Conclusions. These findings point to the overall validity of the drug and clinical data in this Minimum Data Set-based data set. Additional validation efforts will determine whether this data set can be used for studies of geriatric pharmacoepidemiology and for analyses of the influence of different policies and practices on residents' outcomes.
Article
This article has no abstract; the first 100 words appear below. Barbiturates are well known for their capacity to cause death reliably and painlessly and for their efficacy in producing unconsciousness before the administration of other lethal drugs. Barbiturates are used in the execution of prisoners by lethal injection,¹ are commonly employed by Dutch physicians in performing euthanasia,² and have played a part in reported cases of assisted suicide in the United States.³,⁴ A recent best-selling book recommends barbiturates as a reliable method of suicide for the terminally ill.⁵ Physicians also administer barbiturates to the terminally ill without intending that they be used to cause the death of the patient. Even . . . Robert D. Truog, M.D. Charles B. Berde, M.D., Ph.D. Christine Mitchell, R.N., M.S., M.T.S. Holcombe E. Grier, M.D. Children's Hospital Boston, MA 02115
Article
OBJECTIVE Nonmalignant pain is a common problem among older people. The prevalence of pain in the nursing home is not well studied. We looked at the association between nonmalignant pain, psychological and functional health, and the practice patterns for pain management in the nursing home.DESIGNA cross-sectional study.SETTINGNursing Home in four US states.PARTICIPANTSA total of 49,971 nursing home residents from 1992 to 1995.MEASUREMENTSWe used the SAGE database (Systematic Assessment of Geriatric drug use via Epidemiology), which linked information from the Minimum Data Set and nursing home drug utilization data. The MDS items measured included pain, activities of daily living (ADL) function, mood, and time involved in activities. The use of analgesics, anxiolytics, and antidepressants was also documented.RESULTSDaily pain was reported in 26% of nursing home residents. The prevalence was lower among men, persons more than age 85, and racial minorities. Persons suffering pain daily were more likely to have severe ADL impairment, odds ratio (OR) (2.47 (95% CI, 2.34-2.60)), more depressive signs and symptoms (OR 1.66 (95% CI, 1.57-1.75)), and less frequent involvement in activities (OR 1.35 (95% CI, 1.29-1.40)). Approximately 25% of persons with daily pain received no analgesics. Residents who were more than 85 years old (OR 1.15 (95% CI 1.02-1.28)), cognitively impaired, (OR 1.44 (95% CI, 1.29-1.61)), of male gender (OR 1.17 (95% CI, 1.06-1.29)), or a racial minority (OR 1.69 (95% CI, 1.40-2.05) and OR 1.56 (95% CI, 0.70-1.04) for blacks and Hispanics, respectively) were at greater risk of not receiving analgesics. Approximately 50% of those in pain used physical and occupational therapies, which was more than two times higher (OR 2.44 (95% CI, 2.34-2.54)), than use for those not in pain.CONCLUSIONS Daily nonmalignant pain is prevalent among nursing home residents and is often associated with impairments in ADL, mood, and decreased activity involvement. Even when pain was recognized, men, racial minorities, and cognitively impaired residents were at increased risk for undertreatment. More education and research is necessary to improve the recognition and management of pain in the nursing home, remembering that attention should be paid to populations at increased risk for underrecognition and undertreatment.
Article
On admission to a pain management unit, 92.5% of 174 cancer patients suffered from more than moderate pain despite prior treatment. This inefficacy was mainly due to underdosage of drugs, inadequate intake schedule, and hesitation to use strong opioids. Following introduction of an oral drug therapy based on World Health Organization (WHO) guidelines, more than 80% of all patients described their pain as ranging between "none" and "moderate" on a six-step verbal rating scale at all times. To obtain these results, it was necessary to adapt the therapy to increasing pain in the course of terminal disease. Step III (strong opioids) gained more and more importance with time, and step I (nonopioids) was finally useful only in a minority of patients. Side effects played a minor role as a reason to change therapy. Oral drug therapy following these guidelines led to sufficient pain control in most patients over the whole study period (7,400 days); only 11% of the patients required other methods of pain management.
Article
Behavior of a number of Quality of Life measures gathered from two samples of terminal cancer patients over the last weeks of their lives are reported. Samples represent patients in the 26 hospices participating in a nationwide U.S. demonstration project and patients in the palliative care units of two Montreal hospitals. The U.S. data reported are quality of life measures made by a lay principal care person (PCP) or trained interviewer; the Montreal measures were made by both an attending doctor and an attending nurse. The general finding, as expected, is one of increasing deterioration in quality of life, with accelerated deterioration between 3 and 1 week of death. Pain follows a somewhat different pattern than other measures. More patients are in either of the extreme categories at an earlier point in time than found for other measures, and there are fewer changes as death is approached. Finally, about 20% of the patients do not fall into extremely low quality of life categories, even in the week prior to death.
Article
Little systematic research has been reported on analgesic use in terminal cancer patients. This paper presents data from the National Hospice Study on the use of analgesics by a sample of terminal cancer patients served in home based and hospital based hospice programs as well as conventional oncological settings. Patients in hospital based hospice programs were more likely than other patients to have an analgesic prescription and to have consumed analgesics. Patients in hospice settings were more likely to consume analgesia orally and less likely to have "prn" (as needed) analgesic prescriptions. The amount of analgesic consumption was inversely related to age. The paper discusses the implications of these and other findings for the treatment of pain in terminal cancer patients.
Article
Debilitating pain is the symptom most often associated with cancer by the general public. The National Hospice Study (NHS) evaluated pain control among terminal cancer patients served in hospital based (HB) and home based (HC) hospices, and in conventional care settings (CC) such as outpatient clinics and oncology units. Pain was reported by the patient when able to respond and by the patients' primary care person (PCP) during repeated interviews until death. Patient and PCP pain reports were correlated at 0.43. PCPs reported that around 16% of patients were pain free in the last weeks of life while 18% were in persistent pain. Statistically adjusting for differences in the CC, HB, and HC samples, HB patients were less likely to report having persistent pain than either CC or HC patients, although there were no differences in the proportion of patients who were pain free. Age was negatively correlated with the level of pain. As expected, brain and bone metastases were related to pain in opposite directions, with more pain among those with bone involvement and less among those with brain involvement. Conclusions about whether HB hospices really are superior at pain control must be made cautiously in view of the relationship between age and pain and the greater age of hospice patients in our study.
Article
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.
Article
Terminally ill cancer patients at a Veterans Administration hospital were randomly assigned to receive hospice or conventional care. The hospice care was provided both in a special inpatient unit and at home. 137 hospice patients and 110 control patients and their familial care givers (FCGs) were followed until the patient's death. No significant differences were noted between the patient groups in measures of pain, symptoms, activities of daily living, or affect. Hospice patients expressed more satisfaction with the care they received; and hospice patients' FCGs showed somewhat more satisfaction and less anxiety than did those of controls. Hospice care was not associated with a reduced use of hospital inpatient days or therapeutic procedures and was at least as expensive as conventional care. KIE A study conducted at a Veterans Administration teaching hospital in West Los Angeles, in which terminally ill cancer patients were randomly assigned to receive hospice or conventional care, suggests that hospice care offers little substantive difference from conventional terminal care in cost or effectiveness. Outcomes were similar for both groups regarding pain, costs, length of hospital stay, survival curves, use of major surgical procedures and chemotherapy, and activities-of-daily-life scores. However, hospice patients experienced significantly less depression and expressed more satisfaction with care. The authors recommend that hospice care should be available as a matter of choice. They conclude that conventional care may have improved because the hospice movement has sensitized practitioners to earlier inadequacies.
Article
As many as 45% to 80% of nursing home residents have pain that contributes materially to functional impairment and decreased quality of life. Substantial barriers, including a high frequency of dementia, multiple pain problems, and increased sensitivity to drug side effects often make pain assessment and management more difficult in the nursing home setting. Logistic problems in carrying out diagnostic procedures and management interventions are also common. Pain can be alleviated in nursing homes through the careful use of analgesic drugs combined with nonpharmacologic strategies, including exercise programs and other physical therapies. Elderly nursing home residents are more sensitive to the side effects associated with many analgesic drugs, but this does not justify the failure to treat pain, especially in those who are terminally ill or near the end of life. Structured programs for routine pain assessment and treatment are needed. Physician involvement in pain assessment and management is necessary if pain control is to be improved for nursing home patients.
Article
Chronic cognitive impairment is a major problem in U.S. nursing homes, yet traditional assessment systems in most facilities included only limited information on cognitive status. Following the Congressional mandate in the Omnibus Reconciliation Act of 1987 (OBRA '87), U.S. nursing homes now complete the Minimum Data Set (MDS), a standardized, comprehensive assessment of each resident's functional, medical, psychosocial, and cognitive status. We designed a Cognitive Performance Scale (CPS) that uses MDS data to assign residents into easily understood cognitive performance categories. Information was drawn from three data sets, including two multistate data sets constructed for the Health Care Financing Administration. The prevalence and reliability of the MDS cognitive performance variables were established when assessed by trained nursing personnel. Five selected MDS items were combined to create the single, functionally meaningful seven-category hierarchical Cognitive Performance Scale. The CPS scale corresponded closely with scores generated by the Mini-Mental State Examination and the Test for Severe Impairment, nursing judgments of disorientation, and neurological diagnoses of Alzheimer's disease and other dementias. The new CPS provides a functional view of cognitive performance, using readily available MDS data. It should prove useful to clinicians and investigators using the MDS to determine a resident's cognitive assets.
Article
To assess physicians' detection of pain among geriatric nursing home residents and to determine if there are factors that may interfere with their ability to do this. Chart review and patient interview. Geriatric nursing home. One hundred nursing home residents age 65 or older. Seventy-six were communicative. Demographic information, diagnoses, and medication use were compared for several groups of residents to determine their effects on the detection of pain. Sixty-six percent of the communicative residents were identified as having chronic pain. Treating physicians did not detect this problem in 34% of these residents. Those whose pain was not so identified were more likely to have a neurologic disorder other than dementia. When non-communicative residents were compared with those who were communicative, the physicians were found to have identified pain less frequently in the former cohort. Chronic pain is a common problem among geriatric nursing home residents and is frequently undetected. Identification of this problem among communicative residents may be markedly improved by direct questioning about this problem at frequent intervals. New methods of assessing pain need to be created to assist in its detection among the non-communicative population.
Article
To examine the association between self-reported pain and cognitive impairment among frail elderly institution residents. A cross-sectional correlational study. A large urban nursing home and congregate apartment complex housing predominantly Jewish elderly. Seven hundred fifty-eight elderly institution residents (30% in the nursing home, 70% in congregate apartments). The sample was 70% female and averaged 83.3 years of age. Respondent self-reports tapped pain intensity, number of localized pain complaints, cognitive status, and disability in performance of activities of daily living. Attending physicians or physician assistants rated respondents' health status. Pain intensity and number of localized pain complaints bore small but significant negative relationships to cognitive impairment. Pain was positively associated with physician-rated ill health and functional disability. The association between pain and cognitive status remained significant even when controlled statistically for effects of physical health and functional disability. Item-by-item examination of localized pain complaints indicated that markedly cognitively impaired individuals were less likely to report pain in the back and joints. However, examination of possible physical causes of reported pain revealed no differences between pain reports of cognitively impaired versus intact individuals in either the presence or the absence of a likely physical cause. These data provide no evidence for the "masking" of pain complaints by cognitive impairment. They suggest instead that, although cognitively impaired elderly may slightly underreport experienced pain, their self-reports are generally no less valid that those of cognitively intact individuals. Limitations of the research are acknowledged and implications for treatment of cognitively impaired institution residents are discussed.
Article
This paper reports on the experience gained using World Health Organization Guidelines for cancer pain relief over a 10-year period in an anaesthesiology-based pain service associated with a palliative care programme. The course of treatment of 2118 patients was assessed prospectively over a period of 140,478 treatment days. Non-opioid analgesics (WHO step I) were used on 11%, weak opioids (WHO step II) on 31% and strong opioids (WHO step III) on 49% of treatment days. Administration was via the enteral route on 82% and parenterally on 9% of treatment days. On the remaining days, either spinally applied opioids (2%) or other treatments (6%) were utilised. Fifty-six percent of the patients were treated with morphine. Morphine dose escalation was observed in about one-half of the patients being cared for until death, whereas the other half had stable or decreasing doses over the course of treatment. Co-analgesics were administered on 37% of days, most often antidepressants (15%), anticonvulsants (13%) and corticosteroids (13%). Adjuvants to treat symptoms other than pain were prescribed on 79% of days, most commonly laxatives (42%), histamine-2-receptor antagonists (39%) and antiemetics (35%). In addition, palliative antineoplastic treatment was performed in 42%, nerve blocks in 8%, physiotherapy in 5%, psychotherapy in 3% and TENS in 3% of patients. A highly significant pain reduction was achieved within the 1st week of treatment (P < 0.001). Over the whole treatment period, good pain relief was reported in 76%, satisfactory efficacy in 12% and inadequate efficacy in 12% of patients. In the final days of life, 84% rated their pain as moderate or less, while 10% were unable to give a rating. Analgesics remained constantly effective in all 3 steps of the WHO ladder. Other clinical symptoms were likewise significantly reduced at 1 week after initial assessment, with the exception of neuropsychiatric symptoms. During the course of treatment, the latter were the major symptoms on 23% of days, followed by nausea (23%), constipation (23%) and anorexia (20%). Our results emphasise once again the marked efficacy and low rate of complications associated with oral and parenteral analgesic therapy as the mainstay of pain treatment in the palliative care of patients with advanced cancer. Wide dissemination of WHO guidelines among doctors and healthcare workers is thus necessary to effect a clear improvement in the treatment of the many patients suffering from cancer pain in the clinical and home setting.
Article
The controversy surrounding the long-term use of opioid drugs in patients with nonmalignant pain has intensified in recent years. This debate is driven by a new willingness to consider the potential benefits of an approach that has been traditionally rejected as invariably ineffective and unsafe. The published literature continues to be very limited, but a growing clinical experience, combined with a critical reevaluation of issues related to efficacy, safety, and addiction or abuse, suggests that there is a subpopulation of patients with chronic pain that can achieve sustained partial analgesia from opioid therapy without the occurrence of intolerable side effects or the development of aberrant drug-related behaviors. Future research must confirm this impression through controlled clinical trials and clarify those factors that may predict therapeutic success or failure. For the present, the clinician who contemplates this approach must have a clear grasp of the relevant issues and an understanding of the guidelines for treatment and monitoring that have proved useful in practice.
Article
Relatively low use of nonsteroidal anti-inflammatory drugs (NSAIDs) and other analgesics has been noted in patients with probable Alzheimer disease (AD). Although this finding has been explained by a decline in patients' capacities to communicate about pain, self-report on pain of cognitively impaired elderly have been shown to be just as reliable as those of cognitively unimpaired elderly. However, previously published studies were aimed primarily at quantifying pain. Considering the various limbic areas affected in AD, a change also in the more qualitative, affective component of pain might be the cause of the low use of analgesics. Because affective disorders are highest in the early and middle stages of AD and decrease in the final stage, it was hypothesized in the present study that not only would the number of AD patients using analgesics would be lower than among a control group but, moreover, analgesic use would be lower in the early and middle stages of AD than in the final stage. The hypothesis was tested by comparing drug use (NSAIDs and analgesic non-NSAIDs) among 66 AD patients with that among 70 elderly people without dementia. The percentage of AD patients using analgesics was indeed significantly lower than among controls, but drug use was not dependent on the stage of AD. Consequently, our findings only partly support the hypothesis.
Article
The Client Care Monitoring Unit of Oregon's Senior and Disabled Services Division developed and conducted a study with survey-generated information to describe the prevalence of pain and the effectiveness of pain interventions for residents of Oregon nursing home facilities. Forty-four percent of sampled residents who were identified as having pain management needs were found to have problematic treatment regimens. Reports of surveyors' experiences during information collection and review of the Medicare/Medicaid recertification reports of the sampled facilities revealed that lack of assessment, and reevaluation of the effectiveness of treatment for pain were the chief contributing factors that led to these findings.
Article
Hospice care is being used more frequently to provide skills and services that are not otherwise available in nursing homes. For eligible terminally ill patients, the Medicare Hospice Benefit supplies an interdisciplinary team with skills in pain management, symptom control and bereavement assistance. The Medicare Hospice Benefit also covers the cost of durable medical equipment and drugs, except for a nominal drug copayment fee. The services of the hospice team supplement the usual nursing home care at a time when staff, family members and the patient are facing the increased and urgent needs associated with the dying process. The Medicare Hospice Benefit can make it much easier for physicians and nursing home staff to provide comprehensive palliative care for terminally ill patients.
Article
The Health Care Financing Administration requires that patients admitted to certified nursing homes be assessed with the Minimum Data Set, a data collection instrument containing more than 300 demographic, diagnostic, clinical, and treatment variables. Long-term care databases potentially may be used to assess the outcomes of specific treatments as well as drug effectiveness. The authors sought to ascertain reliability and validity of diagnostic and drug data in a database obtained by merging the Minimum Data Set with detailed information on drugs consumed by each resident. A population of 296,379 residents of 1,492 nursing homes in Kansas, Maine, Mississippi, New York, and South Dakota participated in the study between 1992 and 1994. Minimum Data Set clinical diagnoses were contrasted with selected resident characteristics and a variety of symptoms and treatments. Limited to individuals who had been hospitalized in the 6 months preceding the first assessment, Minimum Data Set diagnoses were compared with those on the hospital discharge claims maintained in the Medicare Provider Analysis and Review database. Finally, the probability that the use of selected drugs predicted the correspondent gender-specific, age-specific, or unique labeled indication was estimated. The positive predictive value for Minimum Data Set diagnoses compared with gender or function measures exceeded 0.9, and it was 0.8 for specific symptoms and 0.6 for virtually all other comparisons. The positive predictive value for Minimum Data Set diagnoses compared with those from hospital claims was approximately 0.7 for all chronic medical conditions, except for depression and asthma/chronic obstructive pulmonary disease/emphysema. The positive predictive value for acute/subacute diagnoses (ie, pneumonia, urinary tract infection, anemia) that may resolve during hospital stay was less than 0.5. The positive predictive value for selected drugs, except estrogens, compared with age and gender was close to 1.0 in all cases. When compared to their labeled indication, the positive predictive value was more than 0.6 for all drugs considered, with 0.97, 0.91, and 0.87 for tacrine and Alzheimer's disease, antidiabetics and diabetes mellitus, and L-dopa and Parkinson's disease, respectively. These findings point to the overall validity of the drug and clinical data in this Minimum Data Set-based data set. Additional validation efforts will determine whether this data set can be used for studies of geriatric pharmacoepidemiology and for analyses of the influence of different policies and practices on residents' outcomes.
Article
Cancer pain can be relieved with pharmacological agents as indicated by the World Health Organization (WHO). All too frequently pain management is reported to be poor. To evaluate the adequacy of pain management in elderly and minority cancer patients admitted to nursing homes. Retrospective, cross-sectional study. A total of 1492 Medicare-certified and/or Medicaid-certified nursing homes in 5 states participating in the Health Care Financing Administration's demonstration project, which evaluated the implementation of the Resident Assessment Instrument and its Minimum Data Set. A group of 13 625 cancer patients aged 65 years and older discharged from the hospital to any of the facilities from 1992 to 1995. Data were from the multilinked Systematic Assessment of Geriatric Drug Use via Epidemiology (SAGE) database. Prevalence and predictors of daily pain and of analgesic treatment. Pain assessment was based on patients' report and was completed by a multidisciplinary team of nursing home personnel that observed, over a 7-day period, whether each resident complained or showed evidence of pain daily. A total of 4003 patients (24%, 29%, and 38% of those aged > or =85 years, 75 to 84 years, and 65 to 74 years, respectively) reported daily pain. Age, gender, race, marital status, physical function, depression, and cognitive status were all independently associated with the presence of pain. Of patients with daily pain, 16% received a WHO level 1 drug, 32% a WHO level 2 drug, and only 26% received morphine. Patients aged 85 years and older were less likely to receive morphine or other strong opiates [corrected] than those aged 65 to 74 years (13% vs 38%, respectively). More than a quarter of patients (26%) in daily pain did not receive any analgesic agent. Patients older than 85 years in daily pain were also more likely to receive no analgesia (odds ratio [OR], 1.40; 95% confidence interval [CI], 1.13-1.73). Other independent predictors of failing to receive any analgesic agent were minority race (OR, 1.63; 95% CI, 1.18-2.26 for African Americans), low cognitive performance (OR, 1.23; 95% CI, 1.05-1.44), and the number of other medications received (OR, 0.65; 95% CI, 0.5-0.84 for 11 or more medications). Daily pain is prevalent among nursing home residents with cancer and is often untreated, particularly among older and minority patients.
Article
As chronic disease continues to be the major cause of death and as the elderly population grows, it is important to evaluate the adequacy and completeness of health care strategies for the elderly. Two studies, the National Mortality Followback Survey and the National Institute on Aging Survey of the Last Days of Life, were designed to examine the circumstances of death for representative samples of decedents. Four areas of focus are location of death, transitions among health care settings, circumstances at the time of death, and changes in physical and cognitive function in the last year of life. Although the data are helpful for family planning, they are limited by a lack of data on costs.
Article
Nonmalignant pain is a common problem among older people. The prevalence of pain in the nursing home is not well studied. We looked at the association between nonmalignant pain, psychological and functional health, and the practice patterns for pain management in the nursing home. A cross-sectional study. Nursing Home in four US states. A total of 49,971 nursing home residents from 1992 to 1995. We used the SAGE database (Systematic Assessment of Geriatric drug use via Epidemiology), which linked information from the Minimum Data Set and nursing home drug utilization data. The MDS items measured included pain, activities of daily living (ADL) function, mood, and time involved in activities. The use of analgesics, anxiolytics, and antidepressants was also documented. Daily pain was reported in 26% of nursing home residents. The prevalence was lower among men, persons more than age 85, and racial minorities. Persons suffering pain daily were more likely to have severe ADL impairment, odds ratio (OR) (2.47 (95% CI, 2.34-2.60)), more depressive signs and symptoms (OR 1.66 (95% CI, 1.57-1.75)), and less frequent involvement in activities (OR 1.35 (95% CI, 1.29-1.40)). Approximately 25% of persons with daily pain received no analgesics. Residents who were more than 85 years old (OR 1.15 (95% CI 1.02-1.28)), cognitively impaired, (OR 1.44 (95% CI, 1.29-1.61)), of male gender (OR 1.17 (95% CI, 1.06-1.29)), or a racial minority (OR 1.69 (95% CI, 1.40-2.05) and OR 1.56 (95% CI, 0.70-1.04) for blacks and Hispanics, respectively) were at greater risk of not receiving analgesics. Approximately 50% of those in pain used physical and occupational therapies, which was more than two times higher (OR 2.44 (95% CI, 2.34-2.54)), than use for those not in pain. Daily nonmalignant pain is prevalent among nursing home residents and is often associated with impairments in ADL, mood, and decreased activity involvement. Even when pain was recognized, men, racial minorities, and cognitively impaired residents were at increased risk for undertreatment. More education and research is necessary to improve the recognition and management of pain in the nursing home, remembering that attention should be paid to populations at increased risk for underrecognition and undertreatment.
Article
To determine the medical conditions for which selected analgesics are most frequently prescribed in nursing facilities (NFs), describe the use of pharmacologic and nonpharmacologic pain therapies, and determine the frequency and quality of pain assessment in NF residents. A multicenter, 3-month retrospective drug use evaluation conducted by consultant pharmacists. Eighty-nine NFs having no more than 25% of their patient census representing special populations (e.g., head trauma). A total of 2065 adult NF residents who received at least one selected analgesic. Primary indication for analgesics, pain type, method of pain assessment, nonpharmacologic therapies for pain, prescribed analgesics and regimens, and comorbid conditions were recorded. A total of 54.3% of residents had one indication for analgesic therapy, 31.0% had two indications, and 14.7% had three or more indications. Arthritis was the most prevalent indication for analgesics (41.7% of residents), followed by bone fracture (12.4%) and other musculoskeletal conditions (9.7%). More residents (76.8%) were reported to have chronic pain than acute pain (19.9%), and 3.0% had both chronic and acute pain. Pain type was unknown for 0.2% of residents. Observational pain assessments were used more frequently (for 55.9% of residents) than objective methods (16.6%), and pain was not assessed in 40.6% of residents. Most residents (69.4%) received no nonpharmacologic treatment for pain. Of the 2542 opioid and nonsteroidal anti-inflammatory drug (NSAID) prescriptions, 67.6% were for opioids, 24.8% were for NSAIDs, and 7.6% were for tramadol. Propoxyphene-containing drugs were the most frequently prescribed opioid group, and propoxyphene with acetaminophen was the most frequently prescribed analgesic (35.6% of all analgesics). Most analgesics (63.2%) were prescribed on an as-needed (prn) basis. The findings show a lack of adequate pain assessments, little use of nonpharmacologic interventions, and inappropriate use of analgesic medication. The small percentage of residents with chronic pain assessed objectively suggests the difficulty of monitoring pain progression in NFs. The prescribing of analgesic for most residents (with propoxyphene used most often, long-acting opioids used infrequently, and frequent prn use) was inconsistent with recommended pain therapy in older people and attests to the urgent need to educate NF practitioners on the appropriate use of analgesics.
Article
To determine if family members perceive that hospice improves the care of dying nursing home residents during the last 3 months of life. Mailed survey. Family members for all nursing home hospice enrollees in North Carolina during a 6-month period. After residents' deaths, family members answered questions about the quality of care for symptoms before and after hospice, the added value of hospice, the effect of hospice on hospitalization, and special services provided by nursing home staff or by hospice staff. A total of 292 (73%) of 398 eligible family members completed surveys. The average age of the nursing home residents who had received hospice was 79.5 years; 50% had cancer and 76% were dependent for self-care. In their last 3 months, 70% of decedents had severe or moderate pain, 56% had severe or moderate dyspnea, and 61% had other symptoms. Quality of care for physical symptoms was rated good or excellent by 64% of family before hospice and 93% after hospice (P<.001). Dying residents' emotional needs included care for moderate or severe depression (47%), anxiety (50%), and loneliness (35%). Quality of care for emotional needs was rated good or excellent by 64% of family before hospice and 90% after hospice (P<.001). Fifty-three percent of respondents believed hospice prevented hospitalizations. Family estimated the median added value of hospice to be $75 per day and described distinct special services provided by hospice and by nursing home staff. Family members believe that nursing home hospice improves quality of care for symptoms, reduces hospitalizations, and adds value and services for dying nursing home residents.
Article
For dying nursing home residents, the prevalence of symptoms and care utilization prior to death has yet to be empirically described for a population-based sample. Yet, related work has suggested that the quality of care for dying nursing home residents is less optimal. The provision of Medicare hospice care in nursing homes offers a means for improving terminal care in nursing homes. However, other than controversial findings emanating from the U.S. Office of Inspector General's (OIG's) hospice studies, there is a dearth of evaluative research on the comparative costs and the benefits of Medicare hospice care in nursing homes. In this article, we discuss current knowledge concerning the dying experience of nursing home residents and of the influence of the Medicare hospice benefit in nursing homes. In doing so, we critique the OIG's study of hospice care in nursing homes and we raise concerns regarding access to the Medicare hospice benefit in nursing homes. We conclude by delineating the research needed to more fully understand the dying experience of nursing home residents and the influence of Medicare hospice care provision on this experience.
Synthesis and Analysis of Medicare's Hospice Benefit. Report 4. Use of Medicare's Hospice Benefit by Nursing Facility Res-idents Aging, and Long Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation
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Miller SC, Gozalo P, Mor V. Synthesis and Analysis of Medicare's Hospice Benefit. Report 4. Use of Medicare's Hospice Benefit by Nursing Facility Res-idents. Washington, DC: Office of Disability, Aging, and Long Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, 2000.
Synthesis and Analysis of Medicare's JAGS MARCH HOSPICE CARE AND NURSING HOME PAIN MANAGEMENT 515 Hospice Benefit. Report 2. Important Questions for Hospice in the Next Century
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  • Miller
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  • Coppola
Gage B, Miller SC, Coppola K et al. Synthesis and Analysis of Medicare's JAGS MARCH 2002–VOL. 50, NO. 3 HOSPICE CARE AND NURSING HOME PAIN MANAGEMENT 515 Hospice Benefit. Report 2. Important Questions for Hospice in the Next Century. Washington, DC: Office of Disability, Aging, and Long Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, 2000.
Synthesis and Analysis of Medicare's JAGS MARCH
  • B Gage
  • Sc Miller
  • K Coppola
Gage B, Miller SC, Coppola K et al. Synthesis and Analysis of Medicare's JAGS MARCH 2002–VOL. 50, NO. 3 HOSPICE CARE AND NURSING HOME PAIN MANAGEMENT 515
Report 2. Important Questions for Hospice in the Next Century Aging, and Long Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation
  • Hospice Benefit
Hospice Benefit. Report 2. Important Questions for Hospice in the Next Century. Washington, DC: Office of Disability, Aging, and Long Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, 2000.
A Pathway for Patients and Families Facing Terminal Illness
  • National Hospice and Palliative Care Organization
Synthesis and Analysis of Medicare's Hospice Benefit. Report 4. Use of Medicare's Hospice Benefit by Nursing Facility Residents
  • Miller SC
  • Gozalo P
  • Mor V
The management of chronic pain in older persons.
  • AGS Panel on Chronic Pain in Older Persons