Supporting families at the end of life
A group of Pennsylvania researchers (Casarett, Crowley, & Hirschman, 2004) discovered that bereaved family members valued a number of hospice services they had not expected to receive. On the basis of their findings, they recommend bringing up the following topics during discussions about advance care planning or the hospice option:
- spiritual and emotional support
- 24-hour access to telephone assistance/advice
- regular visits from a nurse
- education about their condition
- free coordination of care and case management
- pain and symptom management
- help for family caregivers
Family caregivers with fewer days of hospice support are four times more likely to develop a major depressive disorder than those who had a longer length of service (Bradley and colleagues, 2004). Moreover, families who are on hospice longer report receiving a greater portion of services and greater benefits (e.g., 80% of expected services for those on hospice for one month as opposed to 95% of services for those who were on for three months or more; Rickerson and colleagues, 2005).
Unfortunately, although hospice use has increased, Medicare data show that 10% of hospice patients are enrolled on their last day of life and 25% of hospice patients are on service for one week or less. The median length of stay is only 20 days. (Medicare Payment Advisory Commission, 2006). Clearly, earlier referrals are needed to provide the care families need and deserve.
Many erroneously believe that hospice is appropriate only for home care. In fact, if prescribed by a physician, hospice services can be delivered in nursing homes. According to a 2006 JAMA article (Hanson & Ersek), facilities with a hospice contract are the preferred option. Studies indicate that residents on hospice care are more likely to have their pain assessed and managed, and are less likely to have physical restraints or receive inappropriate medications (Miller and colleagues, 2002; Miller and colleagues, 2003). Furthermore, in a comparison study, families rated nursing home care with hospice participation higher than nursing home care alone (Baer & Hanson, 2000).
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Advance care planning
Despite high-profile cases such as that of Terry Schiavo, the majority of Americans have yet to complete an advance directive. Our website can help. The Important Decisions section has an initial article about quality of life that is designed to prompt thinking about what makes life worth living and what might, for each individual, be considered “worse than death.” The article about health care planning describes the elements of an advance directive.
It then provides specific information about the most commonly used forms of life support. At the end of each description is a quote from an individual that serves as a springboard for discussion: Does the viewer agree or disagree with the quote? What would the viewer say instead? Finally, there is an article about starting the conversation that includes tips for getting past the barriers that commonly occur when trying to talk to a family member about their health care planning.
If you are interested in doing community outreach on the topic of advance directives, in the resource section of the National Hospice and Palliative Care Organization’s community engagement website, there is a free, downloadable community presentation based on their campaign: It’s all about how you LIVE! “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.
The kit comes complete with PowerPoint slides, suggested events, planning checklists, media support materials, and a calendar to help coordinate with national events.
In addition, the American Hospital Association has several free public service announcements that can be downloaded from their www.putitinwriting.org site. “Your Life, Your Terms” comes in 15-second and 30-second audio files for radio broadcast. There is also a print advertisement that can be modified to include your organization’s contact information.
Below is a list of other online resources pertaining to advance directives.
This is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end of life decisions. The downloadable booklet was put together by the Center for Practical Bioethics and is available in both English and Spanish
This is a very thorough, yet readable, set of articles developed by the American Bar Association to help consumers consider the issues when preparing an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: “Proxy IQ Test” for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
Assembled by the American Bar Association’s Commission on Law and Aging, this downloadable document addresses the 10 most commonly held misconceptions about Advance Directives, offering professionals both insights and answers to their clients’ questions.
Caring Connections, the consumer website of the National Hospice and Palliative Care Organization, offers free downloads of the approved advance directives of all 50 states.
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Cultural and spiritual competence
For all peoples of the world, the end-of-life passage is imbued with deep cultural and religious significance. As practitioners, we need to be sensitive to the expectations and rituals of the people we serve. We also need to recognize that a history of racism, barriers of language, and disparities in care will color community perceptions of hospice and palliative care.
Cultural competence begins when we each become aware of our own cultural heritage and spiritual beliefs. With self-awareness, we can begin to observe and study the heritage and beliefs of others. Although generalizations can be useful, we also must recognize that individuals vary within other cultures and religions as much as they vary within our own. Cultural and spiritual competence calls us to think deeply and be astute in asking questions rather than act on assumptions. Demonstrating our sincere desire to understand the needs of each family will go a long way toward improved communication and a better matching of appropriate care and services.
Here are some online resources to help you in your own acquisition of cultural competence:
Developed by the University of Washington, these tip sheets offer insights for clinicians working with cultures other than their own. They have general healthcare tip sheets for over 10 cultures, including many Asian ethnicities as well as deaf and hard of hearing. Specific to end-of-life care, they have pages for Latino, Russian and Vietnamese cultures.
Summary of a 2004 panel of experts hosted by the Robert Wood Johnson Foundation. The focus is on end-of-life care needs of the African American community and barriers to hospice and palliative care.
Published by the National Hospice and Palliative Care Organization, this 40 page pdf file discusses the results of focus groups of African Americans talking about topics such as caregiving, advance care planning, death, dying and hospice. It also showcases model hospice and palliative care programs around the country that are addressing health care disparities and connecting through active involvement of faith communities.
Downloadable from the Health Care Chaplaincy, this 2013 handbook looks at both Eastern and Western religious traditions surrounding health care, as well as non-European cultural attitudes about topics such as terminal illness disclosure, pain, time orientation, etc.
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Educational resources
In 2002, a Social Work Leadership Summit was convened concerning end-of-life and palliative care. From this gathering of thought leaders, the National Association of Social Workers assembled a set of standards and guiding principles that delineate essential areas of knowledge, ethical responsibilities, guidance for assessment, intervention and treatment planning, as well as commitments to empowerment, advocacy, self-awareness, cultural competence, and interdisciplinary teamwork.
Below is a list of credit and non-credit resources for your professional development.
Sponsored by the National Center for Death Education at Mt. Ida college, students can take online workshops amounting to 60 credits, with a scholarly capping project at the end.
Developed by the Institute for Healthcare Communication, this is a VHS video or slide-supported inservice kit to develop skills for discussing difficult topics such as advance care planning, shifting the focus of treatment to palliative care, death notification and grief, managing anger and mistrust, and resolving conflicts arising from cultural differences. The kit can be purchased in full, or the workbook can be purchased separately.
ADEC offers a two-level self-study certification program in thanatology: one for persons with a BA and one for individual’s graduate level degrees.
Offered by the National Hospice and Palliative Care Organization, these online self-study courses cover clinical topics, grief and loss, pediatrics, etc. as well as courses on management and leadership. Continuing education units are available for nurses and social workers.
ADEC offers an annual conference that gives up to 12 CEUs as approved by the Association of Social Work Boards. Check with your state board to determine if these credit can be applied for your license renewal.
IPPC is a collaborative education and a quality improvement effort among several partnering organizations and a number of leading children’s hospitals. Their website offers a free downloadable curriculum of 5 modules (engaging with families, symptom management, analyzing ethical challenges, responding to suffering and bereavement, and improving communications and relationships). In addition, they provide assessment tools specific to pediatric palliative care.
Written by pioneering physician, Dr. Ira Byock, this summary highlights the model he published in the Clinics of Geriatric Medicine journal concerning the nature of suffering and the opportunity at the end of life.
Offered for members through the NASW website, there are accredited courses on aging in general, as well as cancer care and end-of-life care.
Every year, the Hospice Foundation of America hosts a teleconference on a critical topic in grief and bereavement. Presented each spring, key leaders in research and clinical practice meet as a panel to discuss a topic of current interest. There is usually an accompanying book of edited chapters. Continuing education units are available for social workers, nurses, clergy, case managers and funeral directors. Find out how to access the conference by going to the website.
A department in Mt. Ida College, this Center offers online courses, a Graduate Certificate in Thanatology, and both Summer and Winter Institutes.
Webinars, webcasts and distance learning courses with continuing education credit are available through this national organization.
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References
Baer, W. M., & Hanson, L. (2000). Families’ perception of the added value of hospice in the nursing home.Journal of the American Geriatric Society, 48, 879-882.
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.
Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? Journal of the American Geriatric Society, 52(11), 1923-1928.
Hanson, L., & Ersek, M. (2006). Meeting palliative care needs in post-acute care settings: To help them live until they die. JAMA, 295(6), 681-686.
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.
Miller, S., Mor, V., & Teno, J. (2003). Hospice enrollment and pain assessment and management in nursing homes. Journal of Pain and Symptom Management, 26, 791-799.
Miller, S., Mor, V., Wu, N., Gozalo, P., & Lapane, K., (2002). Does receipt of hospice care in nursing homes improve the management of pain at the end of life? Journal of the American Geriatric Society, 50, 507-515.
Quality of Life Matters (2005). 83% of Americans want to die at home. Quality of Life Matters, 6(4). Naples, FL: Quality of Life Publishing Company.
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.
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