Hospice use for the patient with advanced Alzheimer's disease: the role of the geriatric psychiatrist

Advanced Alzheimer's disease (AD) can place an immense burden on caregivers as they struggle to provide end-of-life (EOL) care for the patient. Palliative care, as delivered by hospice, provides a viable solution. Hospice maintains the patient's quality of life (QOL) and helps the family during the grieving process. However, many providers are not familiar with hospice and its care for advanced AD patients. Geriatric psychiatrists can be central in implementing hospice, and they can remain an important part of the care once it is in place. A principal clinical challenge is establishing the six-month prognosis for such patients, which is a prerequisite for initiating hospice admission.     

The U.S. hospice movement: issues in development.

A grass-roots hospice care movement is underway in the United States modeled after recently popularized British hospice programs. Hospice care is intended to help the terminally ill maintain a personally acceptable quality of life until death. Attention should be given to ensuring the future viability of this service option by allowing for experimentation with and adaptation of existing models, and by integrating it with the overall health care system. Issues to be considered in integrating hospice care include utilization of existing resources, regional planning, standards and licensure, and reimbursement opportunities. Although hospice care may not have an immediate cost savings impact on the health care system, it could develop this capacity in the future. Such impact would not only assure a stable financial base for hospice care but would also affect bed use generally. Continuing dialogue among providers, consumers, and policy makers of various backgrounds is necessary to the effective and appropriate development of hospice care in the U.S.     

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non‐Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access‐to‐care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self‐identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non‐users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.     

A generative response to palliative service capacity in Canada

PURPOSE: This paper situates a large-scale learning and service development capacity-building initiative for hospice palliative care services within the current Canadian policy context for use by international readers. DESIGN/METHODOLOGY/APPROACH: In 2000 a national initiative using action research as its design was crafted to support continuing professional development and knowledge management in primary-health care environments. FINDINGS: The Canadian health policy context is complex and requires innovative solutions to achieve desired changes in response to emerging population health demands for quality end-of-life care. Employment of educational and social science constructs, including complexity theory, communities of practice, transformative learning theory, and workplace learning methods, has proven helpful in supporting the creation of national capacity for hospice palliative care. RESEARCH LIMITATIONS/IMPLICATIONS: There is a significant contribution for social scientists to make in aiding a better understanding of the complexity in health systems. At the same time, an aging population in industrial countries demands more active engagement of legal and bioethical scholars in a range of emerging policy and legislative questions about quality end-of-life care. Educational research is also required to understand better and reform curricula to prepare an emerging generation of health science practitioners for the demands of an aging population. PRACTICAL IMPLICATIONS: Changing health service delivery environments demand rethinking of the knowledge and skills leaders require to influence desired change. A broader understanding of where and how learning takes place is essential for enhancing the quality of patient care. ORIGINALITY/VALUE: The Pallium Project represents a generative response to facilitating learning and building longer-term system capacity. The journey of project development to date illustrates some important lessons that can be adopted from hospice palliative care to inform other primary-health care initiatives, including, potentially, mental health, cardiology, diabetes, geriatrics, where productive change can result from productively linking specialists and primary-care colleagues.     

Characteristics of dementia end-of-life care across care settings

End-of-life care for persons with dementia in different care settings was retrospectively surveyed. In this sample, care recipients receiving hospice care and pain control stayed at home longer and were more likely to die at home. Psychiatric symptoms increased caregiver burden and were the most common reason for admission to an institution, and psychiatric care was associated with longer stay at home. Presence of advance directives decreased hospital stay and increased the likelihood of dying in a nursing home. Care recipients dying at home had fewer symptoms and less discomfort than care recipients dying in other settings. These results indicate that quality end-of-life care can be provided at home and is facilitated by hospice programs, effective pain control, and psychiatric care.     

The costs of a pediatric hospice program.

The recent literature on economic issues of hospice care leaves several questions unanswered. The most important issue concerns how this type of care can be made financially attractive to patients and families for whom it is a medical option. A major study of a home-based pediatric hospice program permitted a more careful analysis than was previously feasible of the charges for hospice care and how those charges are paid. Data on provider utilization and duration in the program were obtained retrospectively on 177 patients. Costs of incidental expenditures and indirect costs were obtained prospectively from the families of 27 patients. A cost model was developed which is general enough to be used by other hospitals that might contemplate establishing a similar hospice program. Our findings are that insurance coverage, especially for publicly funded patients, is likely to be a major impediment for families deciding whether or not to use a hospice program at home.     

Why hospice day care?

Hospice day care would have to be flexible in order to meet individual needs. It would offer security, warmth and tender loving care, providing an opportunity for patients to socialize and maintain their quality of life. Hopefully day care would provide earlier hospice admissions--extending the continuity of care. Recently the hospice day care standards developed in Michigan were published in the American Journal of Hospice Care. They were developed to provide guidelines for policies and procedures which would assure a quality program. The future of hospice day care depends on further development and implementation of these beginning standards.     

Home pediatric compassionate extubation: bridging intensive and palliative care

Compassionate home extubation for pediatric patients is a topic that seldom appears in the literature and is of unknown clinical importance. However, standards in pediatric intensive care unit (PICU) and among pediatric critical care physicians regarding end-of-life decisions are changing, including where and when patient extubation occurs. The authors' hospice recently consulted on an infant with spinal muscular atrophy in the PICU requiring mechanical ventilation, for whom further life-sustaining care was deemed futile. In consultation with the family, nursing staff, physicians, and the ethics committee, and following protocol guidelines, arrangements were made for this infant and his parents to be transported home. Once comfortable with his family, a small amount of lorazepam was given and the endotracheal tube removed. The infant died quietly about 20 minutes later. This case prompted the authors to review the current state of published articles covering this topic, suggest a protocol for implementing home extubation, realize imposed barriers, and discuss potential solutions. A well-developed plan for home extubation procedures may improve interactions with PICU and hospice services and at the same time provide additional choices for parents and patients wishing to maximize end-of-life quality outside the hospital setting.     

Influence of hospice use on hospital inpatient mortality: a state-level analysis

This study tests the hypothesis that high hospice enrollment is associated with lower Medicare inpatient mortality. The results show that Medicare inpatient mortality in a state can be explained by hospice enrollment and a host of demographic and market environment variables. An increase in hospice population by 100 individuals is associated with a reduction of 28 inpatient deaths, ceteris paribus. The results suggest, among other things, that opportunities exist for greater expansion of hospice capacity in low-use states to reduce deaths in the expensive hospital setting and improve the quality of end-of-life care for terminally ill patients.     

Continuum of care comes full circle. Adding hospice care allows a Denver system to better meet patient needs

In November 1993 Hospice of Peace, a home hospice program in Denver, was reorganized under a new joint sponsorship of Provenant Health Partners and Catholic Charities and Community Services. Home hospice completes Provenant's continuum of healthcare. Based on the campus of Provenant Senior Life Center, Hospice of Peace employs multidisciplinary professionals who care for patients and their family care givers in their homes. Each hospice team works with a patient's physician and comes from a pool of primary care nurses, certified nurse assistants, social workers, counselors, pastoral care counselors, and specially trained volunteers and bereavement counselors. Respect for human life at all stages is the ethic behind the organizations' hospice efforts. Even at life's end, when aggressive medical treatment is no longer appropriate, healthcare professionals can enhance patients' quality of life and provide bereavement support to their loved ones. Just as Catholic healthcare addresses the spiritual component of healing, so it addresses the spiritual component of dying.     

Hospice for aged persons without cancer: the experience of the Hampshire County (MA) hospice

Hospice is an option for patients with terminal illness of all types. The advent of the Medicare hospice benefit has led to a rise in numbers of hospice programs as well as hospice expenditure. Terminal care provided through hospice has a demonstrable cost advantage over conventional terminal care. This difference may dissipate as Medicare hospice expenditure continues to rise. An individual hospice program can define its mission within broad guidelines. A program electing to serve all terminally ill patients regardless of diagnosis can occasionally expect to be cast in the role of long term care-provider when six-month survival is exceeded. Precision in prediction of six-month survival would benefit patients and remove one major obstacle to participation by many primary care physicians. Prognostic techniques are being developed that, thus far, have proven no better than physician judgement in assigning risk or predicting survival. Hospice may provide a setting for clinical research of prognostication. The interdisciplinary team can facilitate hospice care and provide support to individual team members. Care of terminally ill non-cancer patients may require added human resources and alteration of team structure to cope with increased service needs and lengths of stay which may be likely to exceed those of cancer patients.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

Care = organisation + physical labour + emotional labour

The formula‘care = organisation + physical labour + emotional labour' identifies component parts of ‘carework’ as they were observed at a hospice. A comparison between women's domestic carework and that of the hospice nurses is made firstly to clarify the component elements of care and secondly to show how the interrelation and balance of the components differs in the two settings. It is argued that family care has been a model for hospice care but that division of labour in hospices, which replicates hospital labour-divisions, results in an inflexibility in hospice care which is incompatible with the ‘family’ model. In the final section it is suggested that emotional labour is likely to be increasingly recognised as part of health care but that the concept of ‘total care’ needs to be questioned.     

A new concept in cancer care: the supportive care program

This article describes the findings of a pilot program designed to enter advanced prostate cancer patients into the hospice benefit while they are still being actively treated, but in situations where treatment is known to be primarily palliative in nature. The supportive care program (SCP) combines the medical model's goal to prolong life with the goal of hospice to palliate symptoms and improve quality of life (QOL). The concept of a SCP was developed to create a team approach where advanced prostate cancer patients who are starting investigational chemotherapy are concurrently enrolled into a hospice program. The objectives were to identify whether SCP improved QOL and continuity of care while remaining cost-effective. Data were collected on patient quality of life, performance status, use of health care resources, and costs for the 36 enrolled patients. A comparison was made to a matched set of 23 control patients. Our findings indicate that the SCP contributes to continuity of care while being cost-effective.     

Hospice social work: a search for identity.

This article describes social work's contribution to hospice philosophy and practice, calls attention to the lack of a distinct social work function on hospice teams, and examines various ways to resolve the problem of social work identity in hospice care. Insights from recent peer discussions of hospice social workers tend to support Kulys and Davis's (1986) earlier findings that psychosocial care is provided regularly by hospice team members other than social workers. Options for strengthening the hospice social work role are discussed, including the development of more specific therapeutic techniques and social work leadership in conducting applied research. The importance of maintaining a value-based, critical perspective is stressed.     

Can goal-based advance planning guide medical care in the nursing home?

OBJECTIVE: To determine whether a goal-based system of advance planning, which allows patients to choose among five "pathways of care" (longevous, ameliorative/comprehensive, ameliorative/basic, palliative/comfort, or palliative/hospice), enables physicians to select treatment options in specified clinical situations. DESIGN: A pencil and paper test was administered in which clinicians were presented five common clinical scenarios and were asked which of four possible treatment options they would recommend, given a predetermined "pathway of care." SETTING: A 725-bed teaching nursing home and affiliated continuing care retirement community. MEASUREMENTS: The proportion of correct answers was measured for each clinician, for each clinical scenario, and for each pathway. RESULTS: Of the test answers, 78% coincided with the reference answers. The greatest rate of correct answers was found for the ameliorative/comprehensive pathway and the palliative/hospice pathway. CONCLUSION: Establishing pathways of care by asking nursing home residents to prioritize their goals of care may help clinicians narrow the range of appropriate options when facing an acute medical problem. Key Words: Advance planning; goals of care; treatment limitations     

Anesthesia practitioner involvement, invasive treatments, and need in hospice pain management: a survey of patient care coordinators.

Pain management is one of the major concerns for the terminal patient. The hospice care team is a highly trained group of health care providers in the area of symptom control, including pain management, for the dying patient. Anesthesia providers also specialize in pain control. The purposes of this study were to survey hospice patient care coordinators to gain an understanding of anesthesia practitioners' involvement with hospice patients, hospice patients' access to anesthesia pain management services, and hospice patient care coordinators' attitudes toward the necessity of anesthesia pain management services for the hospice community. A questionnaire was developed to assess these issues. In general, the findings reflected minimal anesthesia practitioner involvement in the hospice community. Fifty-two percent reported that patients could benefit from invasive treatments offered by anesthesia practitioners. Forty percent responded that more patients could be considered as candidates for invasive pain management techniques if procedures were performed in the patient's home or hospice. Access to anesthesia pain management services was limited by distance to pain clinics and anesthesia practitioners, and more anesthesia pain management services were needed for hospice patients in smaller communities. Cost of anesthesia pain management was frequently proposed as a prohibitive factor.     

Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care?

The purpose of this study was to determine patient and caregiver satisfaction with a hospice program of care. The setting for the study was a home-care hospice in the southeastern United States that provides a full range of services for patients with life-limiting illness and supportive services for family caregivers. Two Likert-type instruments were used to determine satisfaction with staff, communication, education, information provided, symptom management, promptness with service, and overall satisfaction. Some 321 patients and 443 caregivers completed surveys over a two-year period of time. Data indicates the majority of patients and their caregivers were very satisfied with hospice services and the care they received. Providing quality care at the end of life is the goal of hospice. Satisfaction with delivery of care, management of symptoms, and communication with staff are all components of quality care and contribute to quality of life.     

Examining variables related to successful collaboration on the hospice team

Although social work participation on interdisciplinary teams is long-standing, little research has been done to examine its effectiveness. This study used the Index of Interdisciplinary Collaboration to explore relationships between selected variables and teamwork in the hospice setting.The findings indicate that hospice social workers report a high level of interdisciplinary collaboration with colleagues. Whereas education, hospice census, the presence of other social workers, and quality of care were found to be unrelated to overall levels of collaboration, individual items measuring collaboration proved to be linked with hospice census, the presence of other social workers on the team, and quality of care. Further research is required to investigate other possible related variables and their impact on successful interdisciplinary collaboration and service delivery.     

Variation in Hospice Experiences by Care Setting for Patients With Dementia

ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and ParticipantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and ImplicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.