Palliative care opportunities in the LTC setting
As care institutions, both hospices and nursing homes have the opportunity to create family-friendly programs and policies that make the difficult end-of-life period a time of closeness and bonding. By removing the burdens of care and creating a supportive environment, we can liberate the family to concentrate on their relationships, resolving their issues, and saying the all too important "thank you," "I love you, " "I forgive you," and "good-bye."
Beyond family-friendly policies, how can we change community perceptions of nursing homes as less than desirable alternatives? Given reimbursement constraints, the strict regulation of long-term care facilities, and high staff turnover, institutional change is challenging. During the past few years, however, many very practical programs have been developed as nursing homes seek affordable ways to integrate palliative care into their daily workflow. For instance, St. Joseph's Manor in Connecticut was able to increase family satisfaction and help staff cope with loss by sending sympathy cards to the survivors and making a memory box in honor of the patient.
As noted above, long-term care facilities that have hospice contracts are recommended as the first choice for physician referral. 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). Moreover, in a comparison study, families rated nursing home care with hospice participation higher than nursing home care alone (Baer & Hanson, 2000).
To identify residents whose symptoms and goals of care made them appropriate candidates, a JAMA article (Casarett and colleagues, 2005b) described the results of a randomized clinical trial of criteria gathered from a brief interview composed of roughly 20 simple questions concerning symptoms and preferences regarding life support (e.g., CPR, and the use of a mechanical ventilator). If the interview indicated preferences that made a hospice referral appropriate (i.e., emphasis on palliative and quality of life), the resident's physician was sent a fax to this effect. The study team found that 20% of the treatment residents eligible for hospice signed on for hospice care within 30 days of the interview, whereas only 2% of the hospice-eligible control residents ended up receiving hospice services. The treatment group had fewer acute care admissions and spent fewer days in an acute care setting. In addition, family ratings of care in the treatment group were higher than those in the control group.
There are many ways that hospice and long term care facilities can partner to improve the end-of-life experience. Please give us a call at 843-347-5500. We'd love to explore the options with you.
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Hospice and long-term care partnerships in South Carolina
According to 2004 statewide data available through the Carolinas Center for Hospice and End-of-Life Care, 86 nursing home residents in Horry County received hospice service for a total of 7,032 days of care. This represented only 2.84% of total nursing home bed utilization. With their frail status and high levels of pain, residents of long-term care facilities are prime candidates for hospice care.
Long-term care facilities and hospice make a logical partnership. Mercy Hospice and Palliative Care, for instance, can provide inservice training for your staff and attend your IDT meetings to assist with care planning.
Even those residents who choose not to forego curative treatment can receive outpatient palliative care services to ease their pain and discomfort. Palliative care is not yet reimbursable by Medicare. However, through grant funding and generous donations, Mercy Hospice and Palliative Care can provide this service in long-term care facilities regardless of the resident's ability to pay.
Persons receiving palliative care are evaluated by an interdisciplinary team that includes a nurse practitioner, a chaplain and a social worker. They provide consultative services to your facility, however your medical director remains the attending physician.
If you would like to
refer a resident for hospice or palliative care services, please feel free to use our secure and confidential online referral request form, or give Mercy a call at 843-347-5500. (Return to list)
Quality improvement
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.
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 representatives from a wide range of professions and settings. Guidelines address eight 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 or 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 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.
Pain Management resources offered by AMDA. The American Medical Directors' Association has revised its pain guidelines and includes this, as well as a toolkit for implementation, 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.
Quality Improvement Organization Materials. CMS' 8th Scope of Work recently identified issues especially pertinent to palliative care: pain, depression, and pressure ulcers. Free from the nursing home section of MedQic, the Medicare Quality Improvement Community's website, you can download articles, interactive tools, sample policies, staff training modules, research results and other clinical resources specifically designed for nursing homes. www.medqic.org. (Return to list)
Training 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.
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.
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.
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 offer an introduction to palliative care CD with CME credits, as well as links to training programs throughout the country. 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.
Listing of 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.
Medscape online CMEs. Search the Medscape website for free online CME programs on palliative care. www.medscape.com/welcome/cme.
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.
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.
Training Modules to Improve Quality. Downloadable free from the UCLA Borun Center for Gerontological Research, the six modules offered here cover topics pertinent to end-of-life care, such as pain screening, pressure ulcer prevention, and quality of life assessment. http://borun.medsch.ucla.edu.
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 online at www.liebertpub.com/publication.aspx?pub_id=119. (Return to list)
Pain management
As the institution dedicated to the most frail, it is no wonder that nursing homes have a very high percentage of residents in pain. Appropriate pain management is an ongoing challenge. For those residents who are hospice eligible, research shows that they are more likely to have their pain assessed and managed if they are concurrently on hospice care (Miler and colleagues, 2002). That said, there is much that long term care facilities can do to ease the pain of residents. Those interested in focusing on this aspect of care might be interested in reading the work of Hutt and colleagues (2006). They piloted a nursing home Pain Medication Appropriateness Scale with 2000 Colorado nursing home residents and found it to be a promising quality improvement tool.
Other pain management resources are available below:
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 directives
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.
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Ethical issues
Due to the frailty of its residents and a volatile press, nursing homes often find themselves publicly in the crosshairs of difficult ethical issues. Nursing home staff are daily called upon to make hard decisions, from pain management, and tube feeding, to requests for assisted suicide. The "rubber meets the road" in your institution, where practical realities vie with cultural attitudes and societal concerns.
As a long term care facility with significant public oversight, you need evidence-based information to support you in the creation of policies and procedures that guide your employees. Below we offer recent research findings on topics of interest, as well as websites that can provide you with the expert guidance you require.
A report from the President's Council on Bioethics (2005) establishes guidelines for ethical caregiving. In particular, it states that the goal in the clinical setting is "not to extend the length, or postpone the end of the patient's life as long as medically possible, but always to benefit the life the patient still has." In addition, the Council's report states that "the clearest ethical grounds for foregoing life-sustaining treatments are an obligation to avoid inflicting treatments that are unduly burdensome to the patient being treated, and an obligation to avoid treatments that are not at all (or any longer) efficacious in attaining their desired result."
The issue of tube feeding is a case in point. In 2006, a Harvard team of researchers (Buchanan and colleagues) published findings from a nationwide survey of medical directors and directors of nursing representing 448 nursing homes across 25 states. The study revealed that artificial nutrition and hydration was not considered appropriate for most residents who are unable to eat, but that the popular practice reflected the wishes of the family or patient. The study went on to discuss the concern that lack of end-of-life information and lack of support for residents are a chief cause of overly aggressive treatments. Those nursing homes wishing to create evidence-based policies may want to refer to an article in the New England Journal of Medicine which discusses the bioethics of tube feeding and makes recommendations for describing the uncertain benefits and considerable documented risks and discomfort (Casarett, Kapo & Caplan, 2005a).
The Harvard survey also revealed that lack of information about end-of-life care and lack of support for residents at the end of life are primary reasons for overhospitalization, with lack of familiarity with attending physicians ranked second in importance (Buchanon and colleagues). A randomized clinical trial published in JAMA (Casarett and colleagues, 2005b) determined that a brief, 20-question interview conducted by non-clinical research assistants provided enough information for the physician to result in fewer acute care admissions and fewer days spent in the acute care setting.
For those interested in evidence-based approaches to ethical caregiving, you may want to check out the resources listed below.
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)
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.
Buchanan, J.L and colleagues (2006). Nursing Home Capabilities and Decisions to Hospitalize: A Survey of Medical Directors and Directors of Nursing. Journal of the American Geriatrics Society, 54(3), 458-465.
Carolinas Center for Hospice and End of Life Care. (2004). 2004 NC and SC hospice data trends. Retrieved 2/9/07 from the Internet at http://www.carolinasendoflifecare.org/Statistics2004.html.
Casarett, D., Kapo, J., & Caplan, A. (2005a). Appropriate use of artificial nutrition and hydration: Fundamental principles and recommendations. New England Journal of Medicine, 353(24), 2607-2612.
Casarett, D., Karlawish, J., Morales, K., Crowley, R., Mirsch, T., & Asch, D.A. (2005b). Improving the use of hospice services in nursing homes: A randomized clinical trial. JAMA, 294(2), 211-217.
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.
Hutt, E., Pepper, G. A., Vojir, C., Fink, R., & Jones, K. R. (2006). Assessing the appropriateness of pain medication prescribing practices in Nursing Homes. Journal of the American Geriatrics Society, 54(6), 231-239.
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.
President's Council on Bioethics. (2005). Taking Care: Ethical Caregiving in Our Aging Society. Retrieved 2/20/07 from the Internet at http://www.bioethics.gov/reports/taking_care/index.html.
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