Hillel Bodek, MSW

Training in Palliative & EOL Care For the Emergency Dept. Setting

The EPEC (Education in Palliative and End-of-Life Care) Project is in the process of adding on a new training program.  Now, in addition to the initial EPEC Training Program and the EPEC-O (EPEC Oncology) Program which was rolled out in 2006 in conjunction with the American Society of Clinical Oncology, EPEC has rolled out for beta testing a train-the-trainer program in EPEC-EM (EPEC-Emergency Medicine) targetting pallaitive and end-of-life issues that arise in emergency department settings.

Having completed the EPEC train-the-trainer program, EPEC-Professional Development workshop and the EPEC-Oncology train-the-trainer program, and having utilized the EPEC-Geriatirc Modules (developed in 2003) in my teaching, I attended roll-out of the EPEC-EM program at the beginning of this August.

Just as the EPEC-O curriculum design was an improvement on the original EPEC curriculum by providing a much more robust set of subsections to teach the evaluation and treatment of the wide range of symptoms seen in chronic and terminally ill patients and a full module on practitioner burnout (in addition to modules focused specifically on issues relating to oncology patients), the EPEC-EM program's trigger tapes, contained multiple vignettes for each module, demonstrating both the appropriate and the inappropriate ways of addressing a situation, adding significantly to the utility of the trigger tapes as a teaching tool (in addition to focusing on palliative and end-of-life issues that are likely to arise in the emergency department).

EPEC-EM shares the robust educational functionality of the other EPEC programs in that a trainer may pick which slides to use, may modify the slides and the modules, and may add their own slides in order to tailor presentation to their respective audiences.  In addition, one may lengthen or shorten a presentation based on time constraints in particular training situations, and utilize a variety of teaching techniques to present the various topics.  Additionally, as do the other EPEC specialty programs,    EPEC-EM focuses on the unique challenges of providing palliative and end-of-life care to a particular patient population.

Unlike prior EPEC train-the-trainer conferences, where almost all of the health care professionals being trained had practice experience and training in providing palliative and end-of-life (and with pallliative and end-of -life care issues in the context of crticial care, hospice, oncology or geriatric practice), here, a number of the participants were emergency medicine practitioners who did not have significant experience and exposure to palliative and end-of-life care training and practice, even though they have had to address pallaitive and end-of-life care issues that arose in in their ERs.  It is noteworthy that some of the EPEC-EM facilitators were both emergency medicine and palliative care trained, but that is likely to be the exception among the larger group of emergency medicine practitioners.  I have some concerns about the ability of ER staff to obtain needed preceptoring and mentoring in implementing palliative care in Emergency Department settings.  Training sessions need to be followed up by bedside teaching, mentoring and preceptoring by practitioners experienced in palliative care in order for those practitioners to develop necessary palliative care skills and clinical knowledge.

Part of the training in palliative and end-of-life care, particularly in the psychosocial-spiritual domains and in developing advanced communucation skills with individuals and families, requires perceptoring/mentoring by persons already trained and experienced in these areas.  Whereas preceptorship and mentoring in palliative and end-of-life care is increasingly available in crticial care, oncology and geriatric practice settings, it is not widely available in emergency room settings.  Thus, if the EPEC-EM program is to be successful in accomplishing its very important goal of bringing quality palliative and end-of-life care to the ER setting, it will be necessary for emergency medicine departments to develop relationship with palliative-care trained and experinced health care professionals who can help the ER staff develop palliative and end-of-life care competence, particularly in the psychosocial-spiritual and communication areas.

Finally, as have all EPEC programs, the EPEC-EM program speaks of the importance of interdisciplinary collaboration, a critical element in holistic (bio-psycho-social-spiritual) total care of patients that is the hallmark of palliative care.  EPEC needs to do more show this by example, having master facilitators who are not physicians.  In EPEC-EM some of the master facilitators were nurses, certainly an improvement.  However, none are clinical social workers.  Of all of the health care professionals, clinical social workers are the best trained and most expert in addressing patient and family psychosocial needs.  They are the health care professionals who have the most lengthy and robust training and supervised clinical experience geared towards honing their communication skills.  It takes a clinical social worker at least five years of full-time post-graduate supervised clinical experience to become board certified by the American Board of Examiners in Clinical Social Work.  It is important the clinical social workers be recognized and valued for their expertise and competence as health care professionals in palliative and end-of-life care, and that they be accepted as full partners in working with clinically and educating other health care professionals in palliative and end-of-life care.

Caring for pets of hospitalized patients

A social work colleague of mine inquired about potential resources for a patient who has to be admitted to the hospital for cancer surgery but has two dogs who cannot stay with her in the hospital.  She does not have funds to pay for boarding them or for someone to take care of them, and does not have friends or family to care for them.

This is an increasing problem as people who live alone and have pets, particularly the elderly, do not have friends or family to depend on to care for their pets when they must have either a scheduled or emergency hospital adminssion, and do not have the funds to pay for their pets to be boarded temporarily.  There is also a problem when people need to move to a nursing home or hospice and need to find a home for their pets.  In New York City, animal control is often called to take custody of pets who are left at home when someone is hospitalized, but will only board them briefly and will then euthanize them if they are not adopted, because there is no space to board them.  The ASPCA and placed such as Bide-a-Wee cannnot board pets without being reimbursed because these groups are supported only by donations and don't receive government funding.  New York City has a volunteer organization that will board pets temporarily at a cost below what others charge, but even that low fee, supplemented by donations, is beyond the financial means of poor persons and persons living on limited fixed incomes (primarily the elderly).  Compounding the problem, people generally want to adopt pets that are one to two years of age and it is very hard to find persons to adopt older pets.

For many of these people their pets are like family.  The loss of a pet, or the worry about what will happen to their pets, can result in significant emotional stress which can complicate these patients' physical and mental health.

Pets are increasingly being used in hospitals and nursing homes to bring comfort to patients and residents, with great success.

What are agencies and professionals in your locale doing to address this problem?

Hospice for terminal CJD dementia patient participating in a phase I clinical trial

A fellow social worker inquired whether a patient with CJD (Creutzfeldt Jakob Disease) could be admitted to hospice with that diagnosis. She also asked if the fact that the person is participating in a Phase I clinical trial would preclude them from receiving the medicare hospice benefit.

With regard to the first question, CJD, a rapidly progressing form of dementia which proceeds to death within a relatively short period as opposed to Alzheimer's type dementias. Individuals suffering from CJD, if otherwise eligible for Medicare, can usually receive the hospice benefit because of the rapidly progressing nature of their terminal illness.

With regard to the second question, historically patients who are participating in clinical trials have not been eligible for the Medicare hospice benefit because patients on clinical trials were viewed as still pursuing curative care which was viewed as antithetical to hospice and violated the Medicare requirement that in order to obtain the hospice benefit the patient has to forego curative care for his/her terminal illness.

A study by Casarett DJ, Karlawish JH, Henry MI, and Hirschman KB of the Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania, USA. casarett@mail.med.upenn.edu, titled, Must patients with advanced cancer choose between a Phase I trial and hospice?, which was published in Cancer. 2002 Oct 1;95(7):1601-4, found that, "Most hospices and Phase I principal investigators believe that eligible patients should be allowed to enroll simultaneously in hospice and Phase I trials. These results suggest that the choice between hospice and a Phase I trial is a false dilemma and that greater collaboration in this area is needed."

In 2003, Ira Byock, MD and Steven H. Miles, MD published an article in the Annals of Internal Medicine Vol. 138 No. 4 February 18, 2003, pp 335-337, titled, Hospice Benefits and Phase I Cancer Trials. In summary, he argued that, "Medicare denies hospice coverage to patients with terminal illnesses who enroll as participants in Phase I studies, which assess the toxicity and dosing of potential treatments for incurable diseases. Federal regulations require patients to forgo curative therapies, and they interpret phase I agents as treatment for the terminal condition for which hospice care was elected. Thus, by enrolling as a participant in a phase I trial, a patient otherwise eligible for hospice is rendered ineligible. Private insurers have similar provisions for children and adults younger than 65 years of age. Such exclusions are not defensible on ethical or clinical grounds. Policymakers, insurers, and institutional review boards all have a role in resolving this problem."

Later that year, Byock also published an article in Supportive Oncology, Vol 1, #2, July-August, 2003, titled, Palliative Care and the Ethics of Research: Medicare, Hospice, and Phase I Trials. In that article he argued that there is no clinical or ethical justification for failing to allow hospice patients to enroll in clinical trials and for persons in clinical trials to be denied entry into hospice.

Most hospice programs will not accept people on clinical trials. Some are willing to consider accepting patients on clinical trials on an individual basis. However, even if the local hospices are not willing to accept the person because he or she is on a on a clinical trial, a person on a clinical trial should be able to obtain concurrent palliative care to manage their pain and other symptoms and to aid them and their family/caregivers in coping with the terminal illness. A number of studies have validated the benefit, both to the patient and to the research being conducted, of providing palliative care concurrent with a clinical trial.

This being said, it is important to note that some hospices and palliative care services conduct clinical trials relating to treatment for the alleviation and management of pain and other symptoms. These clinical trials are not for the purpose of developing or providing curative treatments for a terminal illness and, therefore, do not create problems with regard to Medicare funded hospice placement.

I would suggest that the social worker check with the local hospices and with the hospice association in her state to see if a hospice will consider accepting this patient. I would also suggest that she attempt to locate a palliative care program (maybe affiliated with a hospice) which will provide palliative care without hospice admission. (i.e., palliative care in a nursing home or palliative care together with home care). The social worker may also wish to consider contacting the CJD Foundation's help line at 800-659-1991 (M-F 9-5). Their website is at http://www.cjdfoundation.org/, to explore other options and to identify resources for the patient and the patient's family.