Hillel Bodek, MSW

The Medicalization & Pathologizing of Grief & Bereavement - A Call to Action

An OP-ED contribution this past week in the NY Times by Allen Frances MD, who was the chairperson of the committee that developed the DSM IV addresses how the new DSM V will affect mental health diagnosis and treatments, particularly in the area of grief and bereavement. http://www.nytimes.com/2010/08/15/opinion/15frances.html?scp=1&sq=Good%20Grief&st=cse. Apparently, what we would term normal grief reactions, may now be diagnosed as major depressive disorder. "This would be a wholesale medicalization of normal emotion, and it would result in the overdiagnosis and overtreatment of people who would do just fine if left alone to grieve with family and friends, as people always have. It is also a safe bet that the drug companies would quickly and greedily pounce on the opportunity to mount a marketing blitz targeted to the bereaved and a campaign to "teach" physicians how to treat mourning with a magic pill." Those of us who deal regularly with grief and bereavement should be concerned about Dr. Frances' warning that, "What is proposed for the D.S.M. 5 is a radical expansion of the boundary for mental illness that would cause psychiatry to intrude in the realm of normal grief, [along with the many effects which will follow for those who suffer from normal grief reactions].

Clergy Burnout & Its Potential Negative Impact on Palliative Care

Clergy Burnout and its Potential Negative Impact on Palliative Care

An article on the front page of the NY Times today (August 2, 2010), titled Evidence Grows of Problem of Clergy Burnout - a Break from Work Is Healthy (Even If It's the Lord's Work), deals with the issue of burnout by members of the clergy. Public health expert who have looked at this trend, found that members of the clergy suffer from obesity, hypertension and depression that are higher than seen in the overall populations in the United States. Since 2010 the expected life span of members of the
clergy has decreased. Their use of anti-depressants has increased. And, many would leave the ministry if they could. One thing that comes out of this research is that taking more time off is a remedy. However, according to the study, "these people tend to be driven by a sense of a duty to God to answer every call for help from anybody, and they are virtually called upon all the time, 24/7," a pattern that is difficult to break, even when their denomination is encouraging them to take time off.  This has potential serious negative implications for palliative care programs and hospices and may limit the ability of these programs to provide spiritual care in hospitals, long term care facilities, hospices and in the community. Coming on the heels of the 2009 report of the consensus conference titled, Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference, which made it clear that spiritual care is a fundamental component of quality palliative care. This is likely to require more social workers and training for those social workers, who, like clergy, use a narrative approach and active listening to assess patients.

Spiritual Care Training Module Available for Download

Dated: July 13, 2010

Thanks to Growth House, you can now download the entire spiritual care training module for palliative and end of life care. The URL for downloads is http://www.growthhouse.org/spirit.

You may download the educational training module, the pre-tests and post-tests, as well as the spirituality questionnaires/exercises for clergy and for health care professionals. You should feel free to use these materials yourselves and to send these materials to your colleagues as long as you and your colleagues provide appropriate attribution. Here's what you can get:

• Spirituality Boost article (PDF) Overview of the project
• Consensus Report Puchalski, C., et al., Consensus report on spirituality in palliative care, Journal of Palliative Medicine, 2009, Vol. 12, No. 10 (Distributed with permission of Mary Ann Liebert, Inc., Publishers)
• Spiritual care module (Powerpoint presentation)
• Spiritual care module (PDF version)
• Spirituality questionnaire for clergy (PDF)
• Spirituality questionnaire for healthcare professionals (PDF)
• Spirituality module pre and post test (PDF)
• Spirituality module pre and post answer key (PDF)
• All spirituality files (zip file)

If you are interested in having training for your staff in doing spiritual assessments and dealing with spiritual issues/concerns/crises, you may contact me at palliativecare.pain_clinicalsw@verizon.net. I hope to train 150 community clergy, seminarians and chaplains by June 2011 and another 150 by June 2012.

Background

In 2010, as we celebrate the birthday of Dame Cicely Saunders who would have been 92 years old this week (July 22, 1918 - July 14, 2005) it is fitting to focus a on a core concept of palliative care, that of Total Pain, particularly spiritual pain. Although the bio-psycho-social approach in medicine traces back to the 1950's, when George Engel, M.D. who was later on the faculty of the University of Rochester School of Medicine, began to develop and refine that concept, it was Dame Cicely Saunders who, in 1948, had added the spiritual domain of suffering to this mix which she referred to as Total Pain. As Dame Cicely recounted, "My story in this field goes right back to 1948 when I was a social worker… meeting a young Polish Jew who had an inoperable cancer.... I became very fond of him. [David Tasma had escaped the Warsaw ghetto and was dying in a London hospital.... Tasma's pain, loneliness and anguish had a profound affect on Saunders. She visited Tasma frequently in the last two months of his life. As Saunders and Tasma spoke of his looming death, Saunders had a revelation,] I realized that we needed not only better pain control but better overall care. People needed the space to be themselves. I coined the term 'total pain,' from my understanding that dying people have physical, spiritual, psychological, and social pain that must be treated. I have been working on that ever since."

With increasing interest in palliative care during the 1990's the importance of spiritual issues and concerns in end-of-life care led to increased attention to spiritual issues and the role of clergy in palliative care. A consensus conference sponsored by the Archstone Foundation was held February 17–18, 2009. The result of the conference was a report titled, "Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference", which was published in the Journal of Palliative Medicine as a special report in the October, 2009 issue and made it clear that spiritual care is a fundamental component of quality palliative care. This Conference Report came on the heals of the of the October 2007 Institute of Medicine report about the need for psychosocial services to cancer patients and their families, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, which led to increased attention to the psychosocial needs of patients who have life limiting illnesses and their families, using the context of cancer. You may download the Report of the Consensus Conference from the Growth House website.

I am a participant in the ACE Project (Advocating for Clinical Excellence - Transdisciplinary Palliative Care Education) which is a palliative care educational experience funded by a major 5-year National Cancer Institute R-25 Grant Award to the City of Hope Medical Center in Duarte, California, for development and implementation of this program to enhance the advocacy, leadership and support skills of competitively selected psycho-oncology professionals throughout the United States. As part of the ACE program, each participant has to do a project which will help further palliative care in their institution or community.

The project I chose is to further the ability of palliative care patients and their families to receive quality spiritual care. The major part of that project is to train members of the clergy in palliative care. Although there are chaplains in institutions (most of whom have training in chaplaincy) the chaplains are limited to working with patients and families when the patient is in their institution (except in hospice where they may provide bereavement services after the death of the patient).

The largest need for palliative care trained clergy is in the communities. The community clergy who are working in congregations and parishes are the first line in providing spiritual care, as congregants/parishioners often seek assistance from their clergy in relation to spiritual concerns that arise in the context of end-of-life and/or serious illnesses or injuries which are life altering. These parishioners/congregants have indicated they want to have their clergy come to the hospitals rather than have a chaplain they do not know and who may not be from their faith group to attend to them in the hospital. In this regard, as the elderly population increases dramatically, as more terminally ill patients are being cared for at home, and as the number of people who suffer from chronic (and at time debilitating) illnesses who remain in the community rather than in hospitals, there will be an increasing demand for community clergy to provide spiritual care to these people and their families.

The second portion of this project is to facilitate, using a transdisciplinary model, the ability of physicians, nurses, social workers, psychologists and clergy who work in palliative care, to perform spiritual assessments and provide interventions to address spiritual issues/concerns/crises in the absence of chaplains trained in palliative care. To this end I have I have updated an educational module which I developed in 2003 when I first trained chaplains (some of who were also community clergy) in palliative care. In response to a posting on the Social Work Palliative Care Listserv over the past eight weeks, I have sent out over one hundred e-mails of this educational training module, Spirituality in Palliative & End-of-Life Care, the accompanying pre-tests and post-tests, along with a spirituality questionnaire/exercise for clergy as well as a spirituality questionnaire/exercise for health care professionals.

Third, it is imperative to seize the moment of the issuance of the consensus report on spiritual care as a critical domain of palliative care, along with the physical, psychological and social domains. If the palliative care and faith/religious communities as a group do not seize upon this important moment in the history of palliative care to energize a nationwide movement to bring spiritual care services into the fabric of palliative care as a co-equal services along with those services which address physical and psychosocial suffering, we may well miss out on the potential momentum that can be generated from this consensus report, thereby squandering the opportunity the report presents to bring spiritual care to its rightful, critically important place in palliative care's core mission to treat total pain. To this end I have reached out to seminaries, various religious denominations, and health care organizations.

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.