What is hospice and palliative care?
"Palliation" means "to comfort," and this concept is at the core of the hospice philosophy. Even if there is no cure for a condition, medical science can provide comfort: managing physical pain, preventing bedsores, easing distressing symptoms such as nausea or shortness of breath. Beyond the body, however, palliative care also addresses emotional and spiritual pain and discomfort not just for the patient, but for family members as well.
To accomplish all this, palliative care is delivered in a team context, with a doctor, a nurse, a social worker, and a chaplain working together to ensure that both the patient and the family are supported during this time of illness.
Hospice is a service that delivers palliative care specifically to patients who have an incurable, terminal condition and wish to spend the time they have left focusing on quality of life rather than complicated, often distressing interventions that may or may not provide a cure. Typically, these patients have decided to let nature take its course and wish to have a peaceful, pain-free death, spending time with family and friends in the weeks and months that remain to them.
Generally, hospice services are delivered in the patient's home, whether that is a house, apartment, or trailer; a nursing home; an assisted living facility; or any other type of lodging. The team works together to create a care plan personalized to the needs and desires of each patient and family. Services are provided to help the patient and to free the family from logistical tasks so they can spend more time with their loved one. These services include:
- Pain and symptom management
- Emotional and spiritual support
- 24-hour a day help by phone
- Regular home visits by a nurse
- Home visits by an aide to assist with bathing
- Education about physical care and the dying process
- Help with decision making concerning advance directives
- Coordination of care with other services (e.g., pharmacy, medical equipment)
- Support for family members
Hospice services are available for free to all Medicare beneficiaries (100% coverage, no copay or deductibles). Many private insurance companies also offer some sort of hospice benefit. Medicare regulations, however, restrict who can participate by requiring a physician to certify that a patient is expected to live for six months or less, and requiring the patient to agree to forego curative treatment. Of course, patients still receive medical care in the form of palliation, but they must be willing to let go of interventions designed to specifically cure their condition.
While hospice is considered the gold standard of care, many people are not referred to this service until the last minute, in part because of the Medicare restrictions. Research indicates that patients and families coping with a terminal condition get optimal benefit from processing all the physical, emotional, spiritual, and legal issues they need to address if they receive hospice support for at least two to three months prior to the death (Rickerson and colleagues, 2005). Unfortunately, 10% of the population in need are initially signed on to hospice the day they die; 25% are signed on during their last week. The median length of service is only 20 days (Medicare Payment Advisory Commission, 2006).
Late referrals appear to have an impact even after the patient dies. For instance, a Yale Medical School study revealed that those family caregivers who have had less hospice support are up to four times more likely to have a major depressive episode after the death than are those who were on hospice for longer (Bradley and colleagues, 2004).
Clearly, earlier referrals are better for both the patient and the family. In fact, once they start receiving services, it's extremely common for people to say they wish they had known about hospice sooner.
In recent years, the whole-person, interdisciplinary approach for easing pain and suffering has been extended beyond hospice and home-based care. Many hospitals now offer palliative care services for inpatients, extending the help offered by the patient's regular physician to include specialized patient/family support from a palliative care physician, a palliative care nurse, and a social worker and chaplain trained specifically to deal with issues that come up in this difficult life passage. Similarly, palliative services are starting to be offered to those with long-term chronic illnesses who are not necessarily facing the end of life in their near future. Medicare and insurance reimbursement varies depending on the services provided.
For more information on palliative care as distinct from hospice care, the Center to Advance Palliative Care offers a consumer-oriented website, www.getpalliativecare.org, that describes this new type of service in more detail.
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National organizations
Association of Death Education and Counselors. Interdisciplinary, professional organization for bereavement counselors, clergy, funeral directors, and medical personnel. www.adec.org.
Center for Practical Bioethics. Nonprofit organization advising on ethically complex issues in medicine and research. Topics related to aging and end-of-life care include pain medications and pain policy; long-term care quality and ethics; advance care planning and issues such as those raised in the Terry Schiavo case; and issues involving dying children. www.practicalbioethics.org.
Center to Advance Palliative Care. National support organization providing technical assistance to hospitals and hospices interested in developing palliative care programs. www.capc.org.
Compassionate Friends. National self-help organization offering friendship and understanding to families after the death of a child. www.compassionatefriends.org.
Family Caregiver Alliance. Consumer-oriented nonprofit offering extensive education and support while also promoting research and public policy initiatives. www.caregiver.org.
National Academy of Elder Law Attorneys. Professional organization of attorneys specializing in the legal needs of senior citizens. Website includes a zip code searchable directory of members to help you find an elder law attorney in your area. www.naela.com.
National Alliance for Caregiving. National coalition of caregiving organizations that conducts research and policy analyses to advocate for improved quality of life for families caring for a dependent relative. www.caregiving.org.
National Association for Home Care. Professional association for nurses, nurse aides, hospice personnel, and other in-home care providers. www.nahc.org.
National Association of Professional Geriatric Care Managers. Professional organization of nurses and social workers trained specifically to assess the needs of the elderly and make referrals to appropriate support services. Website includes a zip code searchable directory of members to help you find a geriatric care manager in your area. www.caremanager.org.
National Guardianship Association. Professional organization of lawyers, financial planners, and other personnel who serve as court-appointed guardians when an individual is no longer able to make financial and/or health decisions for him/herself. www.guardianship.org.
National Hospice and Palliative Care Organization. Professional organization supporting hospices nationwide. www.nhpco.org. (Return to list)
Media Support
Growthhouse portal for end-of-life care. Long known as the international portal for improving care of the dying, this organization pioneered using the Internet to share information and collaborate on policy and educational initiatives. It features newsfeeds, a links page to prominent end-of-life bloggers, professional forums, and a search engine of reviewed resources. www.growthhouse.org.
Knight Ridder syndicated series: Finding Our Way. This popular series of newspaper articles is now available online. Numerous stories weave through 15 poignant yet informative articles, covering topics such as Living with Dying in America, Conversations, Widowhood, Palliative Care, Advance Directives, Culture & Diversity, Spirituality & Faith, Last Rites, Caregiving, Hospice, Nursing Homes & Long-Term Care, When a Child is Dying, Violence & Unexpected Death, Grief & Loss, and Visions for the Future. www.findingourway.net.
LIVE Campaign by Caring Connections. Although Advance Care Planning is the basic focus, this National Hospice and Palliative Care Organization campaign is also geared to inspire community action. "LIVE" stands for
- Learn about options for end-of-life services and care
- Implement plans to ensure wishes are honored
- Voice decisions to family, friends, and health care providers
- Engage in personal or community efforts to improve end-of-life care.
All materials needed are available for download, including a PowerPoint presentation, suggested events and planning checklists, a coordinating calendar with national events, and media support materials to get the word out to community organizations in your region (worksites, churches, civic groups) www.livepartners.org.
Newsroom Library of Articles, sponsored by the Hospice Foundation of America, offers backgrounder information for the press covering topics such as hospice usage; children, adolescents, and loss; grief and the holidays; humanizing the medical system; assisted suicide; and changing care for the dying. www.hospicefoundation.org/newsroom.
Press Center of the National Hospice and Palliative Care Organization. An up-to-date collection of press releases about new stories relating to end-of-life care. Also includes national statistics, basic descriptions of hospice and palliative care, history of the hospice movement, and hospice FAQs. www.nhpco.org/i4a/pages/index.cfm?pageid=3296.
Press Room of the Family Caregiver Alliance. This advocacy and educational support organization offers news releases, legislative tracking, state-by-state caregiver statistics and personal stories, and email alerts to members of the press. www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=348.
Public Service Announcement and Advertisement about Advance Directives. Audio PSAs of"Your Life, Your Terms" are downloadable in 15-second and 30-second options. As well, there is a print advertisement available for download, with permission given to modify it to include your organization's contact information. www.putitinwriting.org. (Return to list)
Statistics
EDELEDATA.ORG. Epidemiology of Dying and End-of-Life Experience. This national database of research results is searchable by topic, key word, state, or a frequently asked question. It includes links to websites where reports and visuals such as charts and graphs are available. Access is free of charge, but viewers must register. Features include email alerts when new entries occur in selected categories. Information covers the gamut from utilization statistics to decedent and community characteristics and quality outcomes. Funded initially by NHPCO and the Carolinas Center for Hospice and End of Life Care, the majority of data focuses on the southeastern United States. However, national data are also available and the database is always expanding. www.edeledata.org.
National Alliance for Caregiving. This national coalition conducts research and policy analyses to advocate for improved quality of life for families caring for a dependent relative. Their research studies are national in scope and rigorous in methodology. Thus, they are frequently quoted in publications pertaining to family caregiving and are called upon to testify to Congress. Reports include topics such as caregiver demographics, costs of caregiving, impact on the workplace, sons as caregivers, and caregiver health issues. www.caregiving.org/pubs.
Report to Congress: Increasing the Value of Medicare. This 2006 report by the Medicare Payment Advisory Commission details current statistics regarding Medicare and makes policy recommendations for adjustments that could improve cost efficiency of the program. There is a chapter dedicated to the benefits of hospice care. (For even greater statistical detail, refer to "A Data Book: Healthcare Spending and the Medicare Program," also available in the Reports section of this website. www.medpac.gov.
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Ethical issues and guidance
From pain management and overregulation of controlled substances, to autonomy and the right to die, the intersection of life and death, by its nature, brings up intense ethical issues. Below is a list of resources that can offer insight into the complexities of bioethics at the end of life.
Aid in Dying Communication Project. Developed by Stephen Jamison, social psychologist, medical ethicist and adjunct professor at the University of California, San Francisco, this project is designed to assist medical providers in communicating with patients who request physician assisted suicide. Aid in Dying also offers ethics consultations, training seminars and presentations. By improving communication skills and their awareness of relevant ethical and psychosocial issues, clinicians can better: explore motives underlying requests for hastened death; uncover currently unresolved medical needs; ensure ethical and compassionate care for their patients; understand their own feelings about these issues; and assist patients in making responsible decisions. www.aidindying.org/services.html.
American College of Physicians Ethics Manual. This publication discusses new issues pertinent to palliative care, including responsibilities when referring to nursing homes, how to refer to appropriate palliative care, how to use hospice care, physician assisted suicide, etc. Pocket-sized book can be purchased through their online store at www.acponline.org.
Center for Practical Bioethics. This national, non-profit organization is known for its work helping patients and their families, healthcare professionals, policymakers and corporate leaders grapple with ethically complex issues in medicine and research. Topics related to aging and end-of-life care include pain medications and pain policy; long-term care quality and ethics; advance care planning and issues such as those raised in the Terry Schiavo case; and issues involving dying children. The Center also published the State Initiatives on End-of-Life, and does work with the National Association of State Attorneys General. www.practicalbioethics.org.
Ethics Charter from American Academy of Pain Medicine. Topics included in the charter are: physician's duty to the patient, clinical concerns, and a section on pain medicine at the end of life. Download the charter for free at www.painmed.org/productpub/pdfs/EthicsCharter.pdf.
Taking Care: Ethical Caregiving in Our Aging Society. This 2005 report by the President's Council on Bioethics discusses issues pertaining to end-of-life care, in particular advance care planning, overly aggressive treatments, the ethical problems in cases of dementia and the question of assisted suicide. www.bioethics.gov/reports/taking_care/index.html.
University of Wisconsin Pain and Policy Studies Group. The purpose of this website is to facilitate access to information regarding pain relief and public policy. Resources include news alerts, a bibliography for those new to the issues, monographs and conference presentations, a database of statutes and regulations, and information on other countries' approaches to pain policy. www.painpolicy.wisc.edu. (Return to list)
Visions for the future
NIH State-of-the-Science Report on End-of-life Care. This 2004 consensus report looks at outcome trends and suggests directions for future research. A primary difficulty in end-of-life care is that "end-of-life" is defined more by regulatory issues than by empirical data.Specific challenges for end-of-life care include the six-month prognosis requirement by Medicare, lack of continuity/information-sharing across care settings, and disparities of care among subpopulations. Download the report from http://consensus.nih.gov.
The Way Forward. Thirty-five Leaders Map the Future of Reform. Issue No. 25 of the series State Initiatives in End-of-life Care asks 35 palliative care visionaries to discuss what they see as upcoming challenges. On the policy level, they call for improving the regulatory climate regarding pain medications, and Medicare's six-month prognosis and restriction against concurrent curative care. They also recommend greater efforts to accommodate diverse populations, making hospice an integral part of comprehensive care, improving reimbursements for palliation generally, addressing spiritual needs more directly, and updating advance care planning documentation to accommodate patients and multiple settings. Published by the Center for Practical Bioethics. www.practicalbioethics.org/cpb.aspx?pgID=895. (Return to list)
References
Bradley, E. H., Prigerson, H., Carlson, M. D. A., Cherlin, E., Johnson-Hurzeler, R., & Kasl, S. V. (2004). American Journal of Psychiatry, 161(12), 2257–2262.
Medicare Payment Advisory Commission. (2004). Report to Congress: Increasing the value of Medicare. Retrieved 2/18/07 from the Internet at http://www.medpac.gov.
Rickerson, E., Harold, J., Kapo, J., Caroll, J. T., & Casarett, D. (2005) Timing of hospice referral and families' perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatrics Society, 53(5), 819–923. (Return to list)
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