Supporting families at the end of life
A
full 83% of Americans wish to die at home. These were the findings of a
2004 nationwide survey of 400 demographically representative adults
that was presented to the National Hospice and Palliative Care
Organization (Quality of Life Matters, 2005). Survey respondents
identified dying with family members around them, dying with dignity,
dying pain free, and dying with the benefit of spiritual counseling as
the most important qualities of a "good death." Although hospice can
provide the instrumental, emotional, and spiritual support families
need to create a good death—at home or in a facility—surprisingly few
people understand this.
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). (Return to list)
End-of-life
preferences in South Carolina
Thanks to the award-winning Carolinas Center for Hospice and End of
Life Care, we have ready access to local and regional statistics
concerning the populations we serve. For instance, highlights of recent
research (Institute for Public Service and Policy Research, 2004)
reveal the following:
- 58% of residents in the Lowcountry do not have a living will or a health care power of attorney.
- 35% of Lowcountry residents think, "when they get married" is the best time to talk about end-of-life care, while 24% said, "when making a will."
- 63% of Lowcountry residents prefer to die at home, and 16% say they prefer to die in the hospital.
- Although
a strong majority in both groups prefer to die at home, African
Americans in South Carolina are more likely than Caucasians to prefer
to die in the hospital.
- In
a shift from recent years, cost of end-of-life care is now the top
concern of South Carolina residents (up from 23% in 1999 to 36%).
Comfort and dignity rank second, and residents of the Lowcountry rate
these qualities as a higher priority (26%) than do those who comprise
the statewide average (20%).
To learn more about data specific to our region, visit the website of the
Carolinas Center for Hospice and End of Life Care or search the national database of research results available at EDELE (Epidemiology of Dying and End-of-Life Experience). (Return to list)
Our Quality of Life Matters newsletter
Like you, we are committed to evidence-based practice. Written by
medical journalists who specialize in covering palliative and
end-of-life care issues, Mercy Hospice is pleased to offer you this
free, quarterly newsletter. Quality of Life Matters features digests of
journal articles, book reviews, links to helpful websites, and a
listing of upcoming conferences nationwide. For an index of the
archives, download the Directory of Key Articles (you will need Adobe Acrobat Reader to view this document). Or, you can download past issues of Quality of Life Matters directly from our Mercy Hospice website. (Return to list)
Especially for office-based physicians
Physicians and their staff find this website useful for patient
education and referrals to local, state, and national support programs.
Simply download the Table of Contents of this site (you will need Adobe Acrobat Reader
to view this pdf document). You can print the Table of Contents as a
master for use in your office and keep copies by the exit counter. All
you have to do is circle the webpages you want for a patient or
caregiver, and your staff can print them. Or give this form directly to
your families who have access to the Internet. This website is
available to answer their questions 24 hours a day, 7 days a week. (Return to list)
Guidelines and best practices
American College of Physicians Ethics Manual.
Discusses new issues pertinent to palliative care, including how to
refer to appropriate palliative care, how to use hospice care,
physician assisted suicide, responsibilities when referring to nursing
homes, etc. Pocket-sized book can be purchased through their online
store at www.acponline.org.
Clinical Practice Guidelines for Quality Palliative Care.
Download part or all of the 65-page booklet created by the National
Consensus Project for Quality Palliative Care, an interdisciplinary
consortium comprised of a representatives from a wide range of
professions and settings. Guidelines address 8 domains: structure and
processes; physical aspects of care; psychological and psychiatric
aspects; social aspects; spiritual/religious/existential aspects;
cultural aspects; ethical legal aspects; and care of the imminently
dying patient. www.nationalconsensusproject.org.
Improving Care at the End of Life: A Sourcebook for Clinicians and Managers. Written by Dr. Joanne Lynne (author of The Handbook for Mortals) in collaboration with the Institute for Healthcare Improvement, this book is based on the research of the RAND Corporation's Palliative Care Policy Center. It includes instructions on the evidence-based Plan-Do-Study-Act approach to quality improvement, and a compendium of successful innovations in palliative care. Full text of this book by is available at www.medicaring.org.
Medical Algorithms.
Developed by the non-profit Institute for Algorithmic Medicine, this
website displays the results of the Medical Algorithms Project. It
includes a search engine for locating over 10,000 algorithms. Some have
web-based forms, others offer downloadable spreadsheets. Performance
measures include those relative to palliative care, quality of life,
social support, symptom burden, etc. Useful for researchers and
facilities interested in applying evidence-based processes or
evaluating their work. www.medal.org.
Promoting Excellence in End of Life Care.
The results of a large national Robert Wood Johnson effort, this
website provides final reports and information on assessment tools used
in numerous demonstration projects. www.promotingexcellence.org
Supportive Care Coalition: Pursuing Excellence in Palliative Care. Long
an advocate for institutional change, this coalition of 16 Catholic
health care systems has invested in significant research projects,
including nationwide studies learning about the needs of patients and
families, and then the development and evaluation of demonstration
projects designed to address these needs. Their focus has been on
affordable, reproducible innovations, thus they share the results of
their research on their website, including assessment/evaluation tools,
their research results, and articles on best practices. Excellent
one-stop resource for learning about the nuts and bolts of innovations
in hospice and palliative care. www.supportivecarecoalition.org. (Return to list)
Pain management
AMDA's Pain Management resources. The American Medical Directors' Association has revised its pain guidelines and includes this for purchase on its website. In addition, they offer a toolkit for implementing the guidelines in your institution, as well as articles on palliation at the end-of-life, inservice materials and a self-study CME offering on pain management in the LTC setting. www.amda.com/tools/clinical/chronicpain.cfm.
Cancer pain recommendations. The American Pain Society has revised its "Guidelines for the Management of Cancer Pain in Adults in Children." Included in the book are pain assessment tools, dosage charts, a discussion of systemic barriers and the double effect dilemma. The guidelines can be ordered online at www.ampainsoc.org.
Chronic Pain Network. National Pain management education with CMEs. Sponsored by Ligand Pharmaceuticals. Free membership is available for professionals only. This website includes sections on research and trends with links to state pain initiatives and advocacy efforts. There are two kits available: Chronic Pain Management for Elderly, Long-term Care and Hospice: and Chronic Pain Regulatory Resource Kit developed by pain experts on the Chronic Pain Education Board. They also feature a CME/CPE/CU webcast of an interactive seminar with national experts in pain management. www.chronicpainnetwork.com.
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.
Pain Management Online. Sponsored by the University of California Irvine, this online course is designed to fulfill California's 12 credit Pain Management and End-of-Life Issues requirement. www.cmeed.com/pain/painmanagement.asp.
Pain.com. Sponsored by the Dannemiller Memorial Educational Foundation and supported by an educational grant from Purdue Pharma L.P., the professionals section of this website offers up-to-date links to full text journal articles, conferences, online CME articles and CME modules and presentations. www.pain.com.
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)
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.
Below is a list of other online resources pertaining to advance directives.
Caring Conversations 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. www.practicalbioethics.org
Consumer's Tool Kit for Health Care Advance Planning 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
www.abanet.org/elderly/toolkit/home.html
Myths about Advance Directives. Assembled by Charles Sabatino, of 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. www.abanet.org/aging/publications/docs/10legalmythsarticle.pdf
State-specific Advance Directives. 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. www.caringinfo.org/i4a/pages/Index.cfm?pageid=3425.
(Return to list)
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:
Cultural and Spiritual Sensitivity, a Quick Guide to Cultures and Spiritual Traditions. Downloadable from the Association of Professional Chaplains, this 2003 self-study course is quite comprehensive (100 pages), including readings and reflective exercises, as well as an overview of a wide variety of cultural and religious traditions. Although it does not focus exclusively on end-of-life, it provides a context that can be helpful. www.professionalchaplains.org/uploadedFiles/pdf/
learning-cultural-sensitivity.pdf .
Cultural Clues Tip Sheets. 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 Albanian cultures. http://depts.washington.edu/pfes/cultureclues.html.
Disparities at the End of Life. Webcast 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. www.rwjf.org/newsroom/activitydetail.jsp?id=10066&type=3.
Key Topics on End-of-Life Care for African Americans. Highlights of the 2004 conference "The Last Mile Home: End-of-Life Care for African Americans" are presented on this website sponsored by Duke University. This is an excellent assembly of thought leaders in cultural competence and the African American spiritual and end-of-life community. www.iceol.duke.edu/lastmiles.
National Center for Diversity at the End of Life. Part of the Robert Wood Johnson initiative to improve end-of-life care, this center served as a focal point for exploring cultural competence in palliative care. Although the Center itself is closed, the website remains, along with several resources that are still applicable. In particular, they created a set of Diversity Notes highlighting common cultural approaches to death, dying and bereavement in the Hispanic, African-American and Asian communities. As well, they offer a compendium of Spanish language resources and an extensive bibliography of articles and books on cultural competence. www.nrcd.com/NRCDPublications.htm.
Role of Race and Gender in the Treatment of Pain. This peer-reviewed article features a discussion of findings regarding disparities in pain management. Full text is available online at www.pain.com/sections/professional/Journals/
journalfull.cfm?id=107.
(Return to list)
Ethical issues and guidance
The intersection of life and death, by its nature, brings up intense ethical issues. Below is a list of resources that you may find helpful in navigating the sometimes challenging waters of end-of-life care.
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)
Online or self-study CMEs
Education in Palliative and End-of-life Care (EPEC).
The Continuing Medical Education Office of the Northwestern University Feinberg School of Medicine has made this very popular workshop available online. www.epec.net.
End-of-Life Palliative Education Resource Center (EPERC).
An online resource center for palliative care educators and clinicians, this website is sponsored by the Medical College of Wisconsin. Perhaps best known for its "Fast Facts" articles, it also offers a palliative care self-study CD with CME credits. www.eperc.mcw.edu.
Hospice and Palliative Care Nurses Association. Incorporated in 1987, this membership organization works to promote standards in palliative care through publications, an annual conference, and multimedia (CD-based) training materials for physicians, nurses, and nursing assistants.www.hpna.org.
Medscape online CMEs. Search the Medscape website for free online CME programs on palliative care. www.medscape.com/welcome/cme.
Unipac self-study series. Earn up to 48 CME credits with this 6 booklet series brought to you by the
American Association of Hospice and Palliative Medicine. Available to oreder online at www.liebertpub.com/publication.aspx?pub_id=119. (Return to list)
In-person educational opportunities
City of Hope.
Long known for its commitment to supporting quality of life, this
website provides links to City of Hope conferences for social workers,
nurses, and psychologists and pastoral care professionals. www.cityofhope.org/prc.
ELNEC (End-of-Life Nursing Education Consortium).
ELNEC is a national initiative of the American Association of Colleges
of Nursing. It sponsors conferences and training materials for staff
development personnel who wish to offer workshops to improve staff
skills in palliative care. The website includes links to certified
trainers, as well as materials for persons interested in becoming
trainers. www.aacn.nche.edu/ELNEC.
Grant MacEwan College.
Earn a post diploma certificate in Palliative Care online while
learning about the Canadian approach to end of life. This distance
learning program is offered for specifically for nurses. www.macewan.ca/web/hcs/post_basic_nursing/home/index.cfm.
Listing of U.S. Palliative Care Training programs. The Medical College of Wisconsin keeps an updated list of clinical training opportunities around the nation.
www.eperc.mcw.edu/Educational%20Materials/Referrals_institution_index.htm.
Oncotalk.
Four-day intensive retreat is designed to help physicians hone their
communication skills concerning delicate conversations. Attendees work
with actors portraying patients, and get immediate feedback and
support. Retreat topics include giving bad news, managing the
transition to palliative care, talking about advance directives and
DNRs, discussing treatment options and informed consent, conducting a
family conference, and handling requests for treatments you feel are
futile. These materials were developed by Dr. Anthony Back at
University of Washington with funding from the National Cancer
Institute. www.oncotalk.info. (Return to list)
Other Internet resources
American Society of Clinical Oncology. To access presentations from past conferences, click on Advanced Search and Virtual Meetings. www.asco.org.
Conversations at the End-of-Life. Developed by the Bayer Institute for Healthcare communication, this is a video or slide-supported inservice 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. This inservice kit can be purchased in full, or the workbook can be purchased separately. www.healthcarecomm.org/index_noflash.php?sec=books&noflash.
End-of-Life Palliative Education Resource Center (EPERC). An
online resource center for palliative care educators and clinicians,
this website is perhaps best known for its "Fast Facts" articles: over
170 one-page, peer-reviewed, evidence-based articles on best practices.
These can even be downloaded to PDAs. Other materials include case
studies, slide presentations, self-study guides, pocket instructional
aids, and starter kits for Hospice Medical Directors and Medical
Students. They also an introduction to palliative care CD with CME
credits, as well as links to training programs throughout the country. www.eperc.mcw.edu.
Growthhouse Portal.
Long known as the international portal for improving care of the dying,
this organization pioneered using the Internet to share information
across countries and to collaborate domestically on policy and
educational initiatives. It features professional forums and mailing
lists, a bookstore, a links page to prominent end-of-life bloggers,
newsfeeds, and a search engine of reviewed resources. www.growthhouse.org.
Initiative for Pediatric Palliative Care.
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, as well as assessment tools specific to
pediatric palliative care. www.ippcweb.org
.
Stanford Faculty Development Center: End-of-life Curriculum. In
collaboration with Growthhouse, Stanford University has made its
medical school curriculum available for free online. Download the eight
PowerPoint presentations, instruction materials, Teacher's Manual, and
bibliography from this website. Included in the offering are excerpts
from the textbook, Palliative Care Perspectives, written by Dr. James Hallenbeck. www.growthhouse.org/stanford.
TNEEL: Multimedia RN & LVN training. For those with access to computers, the University of Illinois–Chicago's Cancer Pain and Symptom Management Nursing Research Group has developed a multimedia training CD Toolkit for Nurturing Excellence at End-of-Life Transition (TNEEL). Modules include comfort goals and assessments; pain and symptom management; decision-making at the end of life; hope and wellbeing; spiritual and psychosocial needs; cultural, ethical and legal concerns; and grief, loss and bereavement. www.tneel.uic.edu/tneel.asp. (Return to list)
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.
Institute for Public Service and Policy Research. (2004). South Carolina State Survey: Summary findings for the Carolinas Center for Hospice and End-of-Life Care. Retrieved 2/1/07 from the Internet at http://www.carolinasendoflifecare.org/pdf/2004EndOfLifeReport.pdf.
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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