Resources for Medical Care Providers
Handout on initiating a hospice discussion
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- Determining a prognosis
- Initiating a hospice discussion
- Advice for physicians caring for terminal patients
- Online or self-study CMEs
- Our Quality of Life Matters newsletter
- Supporting patients and families
- A time to treat and a time to let go
- Guidelines and best practices
- Pain management
- Advance care planning
- Cultural and spiritual competence
- Ethical issues and guidance
- In-person educational opportunities
- WebMD's online Drug & Medication Identifier
- Other Internet resources
Determining a prognosis
- Carcinomatous meningitis
- Distant metastases
- Malignant complication such as bowel obstruction, pericardial effusion, or hypercalcemia
- Multiple tumor sites (>= 5)
- Chronic hypercapnia: Paco2 > 50 mm Hg (6.6 kPa)
- [Paco2 = partial pressure of carbon dioxide; kPa = kilopascal]
- Cor pulmonale
- Dyspnea at rest, persistent resting tachycardia
- Intensive care unit admission for exacerbation
- New dependence in two activities of daily living
- New York Heart Association class III or IV with symptoms despite maximal medical management (Class III: patients with marked limitation of activity; they are comfortable only at rest; Class IV: patients who should be at complete rest, confined to bed or chair; any physical activity brings on discomfort and symptoms occur at rest.)
- Serum sodium level < 134 mEq per L (134 mmol per L), or creatinine > 2.0 mg per dL (180 µmol per L), attributable to poor cardiac output
- Acute hospitalization (especially for pneumonia or hip fractures)
- Dependence in all activities of daily living, language limited to several words, inability to ambulate
- Dependence in most activities of daily living
- Frequent hospitalizations, office or emergency department visits
- Weight loss > 10 percent over past six months
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.
Members of NHPCO can access a series of worksheets to assist in determining prognosis for a variety of conditions, including ALS, stroke and coma, liver disease, HIV, dementia, pulmonary disease, and heart disease.
This modification of the Karnofsky Scale adds assessments of cognitive changes and changes in dietary intake. The PPS has been demonstrated to be a valid and reliable measure.
Originally developed for cancer patients, this instrument has been found to also be reliable for assessing 30 day prognosis in non-cancer patients. The PaP utilizes the Karnofsky Scale and adds 5 other criteria (dyspnea, anorexia, WBC count, lymphocytes, and physician's own assessment of survival time.)
Initiating a hospice discussion
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.
Everyone needs a sense of hope
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.
How the illness affects daily life
Before formally introducing hospice, you may want to ascertain some daily life information, including uncomfortable or bothersome symptoms and emotions:
- Poor sleep
- Lack of appetite
- Difficulty breathing
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:
- Support for emotional issues surrounding the disease, including caregiving issues for family members
- Information about financial and other support services available in the community
- Home visits from a nurse who can serve as your eyes and ears to keep you abreast of changes and relay any new instructions from you concerning alterations in medication, dosage, etc.
- 24 hour telephone access to trained personnel to assist with caregiving concerns
- Visits from a bath aide several times a week to assist with this tiring but necessary activity
- Visits from a trained volunteer to provide respite for family members
- Expert, and free consultation by the Medical Director, a specialist in palliative care
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.
Making the referral
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 509-489-4581 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 509-489-4581 and we will be happy to partner with you in this endeavor.
Quick tipsheet for initiating a hospice discussion
(A structured discussion framework inspired by the work of Dr. Casarett)
- Establish the medical facts. To avoid mixed messages from medical professionals, coordinate with other care providers to gain consensus about the hospice choice.
- Set the stage. Choose a comfortable time and setting for an uninterrupted conversation. It is optimal if key decision makers in the family are present.
- Assess understanding of the prognosis. Begin by asking the patient about his/her understanding of the disease, its severity, and what the likely outcome is to be. This is a time to observe any misunderstandings or denial on the part of the patient or family.
- Help patient define his/her goals for the foreseeable future. These goals can be treatment goals and can determine whether the focus is curative or palliative. Beyond treatment goals, however, it is instructive to ask about hopes and fears. Understanding what the patient hopes to achieve in the near future (even nonmedical goals such as attending a family event or seeing a sibling one last time) can provide hope and personal empowerment even in the face of an incurable condition. Similarly, understanding what the patient/family hopes to avoid (e.g., uncontrolled pain, dying in the hospital) can help maximize the patient/family's unique definition of quality of life.
- Reframe those goals, as needed, to align with the realities of the prognosis. If patient/family goals are unrealistic, a realignment process can be initiated with compassion by using "wish statements" (e.g., "I wish I could say that we will be able to …, but we can't. What we can do is …"). It may take time for the family to adjust emotionally to this news. Having this conversation sooner rather than later will provide maximum opportunity for the family to regroup and be empowered to come up with their own achievable goals, be they medical, or personal. It is easier to let go of curative care if there are other hopes to focus on. The hospice option is most appropriately brought up once the patient/family treatment goals are consistent with a palliative approach.
- Identify care/service needs, for the patient and family members. Because many people erroneously associate hospice with "giving up" or imminent death, acceptance of the service can be facilitated by first identifying the patient's symptoms in need of palliation (pain, constipation, fatigue, sadness, anxiety). Next, looking more at the day-to-day realities of living with a serious condition, identify assistance needs such as weekly home visits to address changing symptoms, emotional or spiritual support, a home health aide to bathe and groom the patient, advice concerning financial or other community programs the patient or family may be eligible for, etc.
- Introduce hospice as a service that supports goals and addresses care needs. Once the palliative needs and desired services are identified, hospice can be introduced as a program that is free, or very low cost, and designed specifically to address the patient/family's care and service needs.
- Respond to emotions and concerns. Acknowledging feelings and addressing concerns is paramount before eventually making the official recommendation of hospice. Asking about any past experience or concerns about hospice offers an opportunity to dispel myths and reassert the physician's continued participation in care.
- Make a hospice referral. An initial enrollment visit can be scheduled, or an "information only" visit.
Advice for physicians caring for terminal patients
Find excellent tips to help you discuss end-of-life issues with your patients.
These tips have been developed with respect for the physician-patient relationship and understanding that each situation and patient is unique.
Online or self-study CMEs
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.
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 online palliative care courses and a palliative care self-study CD, all with CME credits.
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.
Search the Medscape website for free online CME programs on palliative care.
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.
Our Quality of Life Matters newsletter
Like you, we are committed to evidence-based practice. Horizon Hospice is pleased to offer you the free, quarterly newsletter, Quality of Life Matters. This publication, written by medical journalists who specialize in covering end-of-life care issues, features digests of journal articles, book reviews, links to helpful websites, and a listing of upcoming conferences nationwide. Bookmark this page so you will always have access to the
Supporting patients and families
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).
A time to treat and a time to let go
[Reprinted with permission from the New York Times article posted August 19, 2008 by Jane E. Brody]
Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.
(Posted by permission.)
Guidelines and best practices
As 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 2009, 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.
This 49-page downloadable booklet published in 2008 offers practice guidelines for a wide range of symptoms covering physical, cognitive and psychosocial distress. Topics include pain, dyspnes, anorexia/cachexia, nausea and vomiting, constipation, bowel obstruction, delirium, distress and palliative sedation. The guidelines include screening, assessments, estimated life expectancy, interventions, reassessments, and after death 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.
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
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.
This site is described as a “noncommercial resource for healthcare professionals, providing open access to clinical news, information, research, and education for a better understanding of evidence-based pain-management practices," It is sponsored by an educational grant from Covidien, a pharmaceutical company, and is affiliated with several pain management organizations, including the Addiction Treatment Forum, the American Academy of Pain Management, the American Association for the Treatment of Opioid Dependence, the American College of Hospice & Pain Pharmacy, and others. The site is organized by tabs, and “mousing over” each tab displays the articles contained within it. Tab topics include: Topics e-Briefings; News Research/Updates; Events Calendar; Sponsors/Affiliates; Clinical Concepts; Non-Opioid Therapies; Opioid Rx; Pain Disorders; FAQs; Guidelines/Reports; Education/CME Locator; Related Websites; Patient Resources, and Site Policies.
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.
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.
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
Developed by the Institute for Healthcare Communication, this is a VHS video tape 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.
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.
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:
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.
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.
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.
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.
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.
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.
The American College of Physicians, in conjunction with ten other professional societies, offers ethical guidance for developing mutually supportive patient-physician-caregiver relationships. Although physician recognition of the value of the caregiver role can decrease rates of patient hospitalization and institutionalization, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. This paper helps to clarify the issues and promote a constructive approach that allows for optimal teamwork in the context of setting appropriate boundaries.
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.
In-person educational opportunities
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.
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.
The Medical College of Wisconsin keeps an updated list of clinical training organizations around the nation.
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.
WebMD's online Drug & Medication Identifier
Other Internet resources
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.
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. Included in their blog page is a section on case studies with accompanying discussions that teachers may find helpful.
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.
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.
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.
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
Please Note: Horizon Hospice does not specifically endorse the activities of these organizations, but offers their information as a sample of the kinds of materials and services that are available.
"My staff really likes this site. They downloaded the Table of Contents form and keep it in the exam room for me. I can just circle the articles or community program pages I want for a patient, and then they print it out as part of the exit procedure."