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AAHPM offers self study CMEs with booklets and CD-ROMs. Topics include current concepts in palliative care, a hospice medical director course, symptom management and disease updates.
The AMDA records the presentations of its annual symposium and makes them available as individual self-study CME courses. There is an extensive library of palliative care workshops, as well as sessions on hospice-LTC partnerships and working together as part of an interdisciplinary team.
The Continuing Medical Education Office of the Northwestern University Feinberg School of Medicine has made its palliative care modules available for online CMEs. Modules are on topics such as pain management; communicating bad news; physician-assisted suicide; withdrawing/withholding treatment; futility; and depression, anxiety and delerium. They also have special modules focusing on issues pertinent to oncology.
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.
Incorporated in 1987, this membership organization works to promote standards in palliative care. In addition to their annual conference, they offer Continuing Education units for nurses via monthly teleconferences and multimedia CD-ROMs for self-study. They also maintain links to the websites of private organizations that sell self-study or online continuing education modules.
Continuing Education Units are available for nurses who take these 4-week, distance learning classes offered in conjunction with the National Hospice and Palliative Care Organization. Courses are comprised of weekly readings, “lectures” and Internet-based discussions. Participants can engage with these activities at their own convenience, 24/7.
NHPCO offers an interactive audio web seminar series, with CMEs available, on a variety of topics. In addition, they have distance learning modules for their CME/CE Hospice Management Training Program and online courses offered in collaboration with Mt. Ida College.
It’s not a comfortable discussion, telling a patient and their family that a cure is unlikely. But there are compassionate ways to do it that ease the shock and assure the patient that you are committed to their care. Dr. David Casarett, a fellow at the Institute on Aging and a professor at the University of Pennsylvania School of Medicine, has outlined a structured discussion framework, paraphrased below, for introducing hospice and the shift to a palliative-only approach.
If a cure is not possible, that does not mean that the patient must be stripped of all hopes. It simply means that they need assistance in focusing on realistically achievable goals.
In particular, it is recommended that physicians ascertain the patient and family’s understanding of the disease severity and prognosis. If there is a discrepancy between their understanding and yours, a conversation about patient goals (medical and otherwise) as well as patient hopes and fears can provide information that can lead to an empathetic delivery of bad news.
For instance, a patient’s medical hopes might include at least a partial recovery, with non-medical hopes topped by a desire to see her granddaughter graduate from high school two months off. Fears might include concerns about pain and an intense dislike of the hospital. The physician could then initiate a shift-to-palliative-care discussion by beginning with a “wish statement”:
“I wish we could promise you a cure, but I’m afraid that is not likely. What we can do, however, is help you with your stamina so that you could enjoy your granddaughter’s graduation. That’s a very achievable goal. I also want to assure you that we can keep your pain at bay and that there are free services that can help you to remain at home if your desire is to stay out of the hospital…”
Certainly it will take time to emotionally process the shift from curative to a palliative-only approach, which it why it is advisable to have these discussions sooner rather than later. Professional opinion and several studies indicate that patients and families appear to receive optimal service benefit and express maximum satisfaction when they have received palliative care and the support of hospice for 30-90 days before the death (Emanuel, von Guten and Ferris, 2000; Lynn, 2001; McCarthy, Burns, Ngo-Metzger, Davis and Phillips, 2003; Rickerson, Harold, Kapo, Caroll and Casarett, 2005; Teno and colleagues, 2004).
Through a focus on achievable goals, you can begin the move away from a curative focus while empowering the patient and family to define what hope and quality of life means to them.
Of course, some patient/families do not view a palliative-only approach as an appropriate treatment model. Particularly in the case of prolonged, chronic diseases such as congestive heart failure, COPD, and dementia, many patients and families do not grasp that these are ultimately fatal conditions. Dr. Casarett and colleagues (Casarett et al., 2005; Casarett, Van Ness, O’Leary and Fried, 2006; Casarett and Quill, 2007) suggest that an explanation of the progressive and fatal nature of the condition can help patients and families come to more realistic terms with their options. Mentioning to these patient/families that hospice may be a future possibility can plant a seed that can reduce resistance later should they come to accept the terminal nature of the condition.
Before formally introducing hospice, you may want to ascertain some daily life information, including uncomfortable or bothersome symptoms and emotions:
As well, understanding patient and family needs for support services ahead of time can help in the introduction of hospice as an appropriate plan of care. Services families often are unaware of include:
Many people have misconceptions about hospice. They believe that it is for the imminently dying or that a referral to hospice means their physician has “given up on them.” The mere mention of hospice can trigger these associations and any negative experiences or stories they may have heard. To avoid an emotionally reflexive response, it is best to ease into the hospice discussion by linking it into their daily care and service needs.
“From what we’ve discussed, then, it looks like you could use some help with … There is an excellent service that can provide this assistance for free or very low cost. Have you heard of hospice? What is your understanding of their program?”
By emphasizing the program and services that match their needs, you demonstrate your good listening and understanding of their daily life issues. You also keep their attention on the benefits. Certainly, it’s a good idea, at this point, to allow for an emotional reaction and to respond with reassurance about your commitment to the patient/family.
It’s also wise to ask if the patient or any family members present have had past experience with hospice, or had friends who have had experience with it. A question of this nature allows you to identify any myths, including any concerns they might have that you will no longer be their physician. (This is where you can describe hospice as an adjunct service, where you continue as their doctor and will be consulted regularly. Hospice just allows you to have “eyes and ears” coming to their home on a regular basis to answer questions and report back to you concerning any changes that might best be handled with new medications or therapies.) For some patients, it is reassuring to also know that patients do sometimes “graduate” out of hospice because their condition improves.
This is also a good time to point out that hospice services are paid by Medicare, including equipment, medications, and staff time needed to keep the patient comfortable and out of pain. In some situations a small co-pay may be required, but it is usually nominal.
For families that are not yet sure if hospice is a service they wish to pursue, you do have the option of requesting an “information only” visit. A representative from our hospice will come out, and with no strings attached, talk to the patient and family about their care and service needs. The representative will describe the services available, as well as the cost and eligibility requirements. The patient and family can ask questions and will be given brochures about our hospice and the range of services they can receive. You and the patient can then discuss the hospice option and determine if this is an appropriate fit.
If you feel the patient and family are ready for hospice, you can contact us at [Your Phone Number] and request an enrollment visit.
We understand that it is challenging to bring up the hospice option. Hospice may not be appropriate for all your terminally ill patients. But it is certainly a service that is being under-utilized, both in actual numbers of eligible patients as well as people being referred so late in the disease trajectory that they do not have the 30-90 days of service that appear to be optimal for maximum use and satisfaction. If there is anything we can do to help you connect appropriate families with the palliative care and services they require, by all means contact us at [Your Phone Number] and we will be happy to partner with you in this endeavor.
(A structured discussion framework inspired by the work of Dr. Casarett)
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Developed by two physicians in the 1940s, this 11 point scale is an attempt to subjectively quantify an individual’s physical and functional ability. It is not known for its precision, but it is easy to use and has stood the test of time.
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.
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.
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.
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.
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:
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 topAs published in 2008 in the Annals of Internal Medicine, this review of the literature presents a concise overview of palliative recommendations for addressing pain, dyspnea and depression.
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
Published by the National Consensus Project and revised in 2013, these downloadable guidelines discuss 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.
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 their website.
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.
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.
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
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.
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.
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.
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.
The entire Ethics Manual is available online with a large section dedicated to care of patients at the end of life. Topics include palliative care, decision-making, advance care planning, withdrawing and withholding treatment, artificial nutrition and hydration, Do-Not-Resuscitate Orders, “futile” treatments, determination of death, physician-assisted suicide and euthanasia, disorders of consciousness and solid organ transplantation.
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.
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 their website.
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.
To access presentations from past conferences, click on Advanced Search and Virtual Meetings.
Blogs are a type of web-diary, where authors write about a topic of interest. They may include facts and be well-referenced. They almost always have a more casual tone and personality. There is rarely a pretense of objectivity. This makes them entertaining to read. And when you find an author you respect, following that author’s blog is almost like having a cup of tea and visiting. Blogs are often informative and insightful. Within their own context, they can be both fun and useful. But it would be a mistake to consider them in the same category as a peer-reviewed journal. Until you really get to know a blogger’s style and credibility, check their facts for yourself.
GeriPal describes itself as “a forum for discourse, recent news and research, and freethinking commentary.” It has an interdisciplinary team of contributors addressing both clinical and policy issues.
Intended for healthcare professionals, the Pallimed bloggers review palliative medicine, hospice and end of life research, with links to related blogs. These authors are professional clinicians with a strong research focus and a gracious respect for the art and spirit that are the foundation of palliative care. (They even have a special section for “Arts and Humanities”.) Pallimed also hosts a weekly twitter #hpm chat, @hpmchat.
New York Times Blogger Jane Gross shares her own experiences, advice from professionals, and stories from readers on topics related to aging, caregiving, and end of life issues. Her sources tend to be very credible (digests of peer-reviewed literature, or synopses from an elder care conference). Her topics cover a wide range of issues and provide a sophisticated analysis one would expect from the New York Times.
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.
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.
The “Fast Facts” series includes over 300 quick updates about a range of palliative care topics.
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.
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.
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.
Casarett, D., Karlawish, J., Moralies, K., Crowley, R., Mirsch, T., & Asch, D.A. (2005). Improving the use of hospice services in nursing homes: A randomized controlled trial. Journal of the American Medical Association, 294(2): 211-217.
Casarett, D.J., & Quill, T.E (2007). “I’m not ready for hospice”: Strategies for timely and effective hospice discussions. Annals of Internal Medicine, v146: 443-449.
Casarett, D., Van Ness, P.H., O’Leary, J.R., Fried, T.R. (2006). Are patient preferences for life-sustaining treatment really a barrier to hospice enrollment for older adults with serious illness? Journal of the American Geriatrics Society, v52, 1923-1928.
Emanuel, L.L., von Guten, C.F., and Ferris, F.D. (2000). Gaps in end-of-life care. Archives of Family Medicine, v9(10): 1176-1180.
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.
Lynn, J. (2001). Perspectives in care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. Journal of the American Medical Association, v285(7): 925-932.
McCarthy, E.P., Burns, R.B., Ngo-Metzger, Q., Davis, R.B., and Phillips, R.S. (2003). Hospice use among Medicare managed care and fee-for-service patients dying with cancer. Journal of the American Medical Association, v289(17): 2238-2246.
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.
Teno, J.M., Claridge, B.R., Casey, V., Welch, L.C., Wetle, T., Shield, R., & Mor, V. (2004). Family perspectives on end-of-life care at the last place of care. Journal of the American Medical Association, v291(1): 88-94
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