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Sunday
Apr062014

It’s a New Day

This past week, HealthCare Chaplaincy Network (HCCN) with funding from the John Templeton Foundation hosted a landmark conference titled “Caring for the Human Spirit: Driving the Research Agenda for Spiritual Care in Health Care.” The event was originally conceived as the capstone event for a three year grant from the John Templeton Foundation that funded six foundational studies which begin to lay the foundation for the workings of spiritual care and chaplaincy care in health care and begin to develop a cadre of health care chaplains engaged in this research.

Certainly, the event more than satisfied its original purpose. The six presentations from the research groups were extraordinary in both the sophistication and power of the results and in the rigor and professionalism with which they were presented. The question of whether professional chaplains can make significant contributions to research in the field and help advance the evidence base for chaplaincy care is now answered in the affirmative. The question of whether spiritual care can be researched productively is also answered in the affirmative.

However, the event turned out to be much more than simply a reporting out of six research groups- as ground breaking as that reporting was. When HCCN issued its call for proposals on this project, we really didn’t know what the quality and quantity of the response was going to be. One guess was twenty proposals would be generated and this guess was generally thought to be optimistic. The call generated 72 responses of which 56 were judged of high enough quality to be presented to the review panel as finalists. Thus, it became immediately clear that there is a tremendous interest in this kind of research, much of it from highly sophisticated research groups.

Given this beginning to the project, it should not have been a surprise that the conference also drew a response far beyond what many would have guessed. Despite a very short lead time for the publicity and the costs of coming to a conference in New York City, the conference drew close to 250 attendees from all over the US and several other countries with another significant audience attending though live streaming video. Anecdotally, the response of those attendees was overwhelmingly positive.

So what does this all mean?  History will provide the best answer to this question of course but I am impressed by the similarities to integrating spiritual care in health care. Almost every survey published to date is clear that a majority of patients and family care givers want their spiritual and religious needs integrated into their health care- especially as they make decisions about how that care is to proceed. An increasing number of directives and guidelines including from such prestigious bodies as the World Health Organization promote the universal availability of palliative care and with it the inclusion of spiritual care. And yet, many people who could benefit from palliative care, including in the US, do not get it and many who get something billed as palliative care do not get good spiritual care as part of that care.

So we clearly have a lack of alignment between what many patients and many health care authorities think ought to happen and what is happening. Why? One issue has to do with available workforce. Even hospitals that are looking to hire a physician board certified in palliative care often have trouble finding one. One influential palliative care guidelines panel lists a board certified chaplain as “preferred” rather than required because they were aware that it is currently impossible for many palliative care teams to find a board certified chaplain with the proper training. One initiative that is needed here is to continue to educate palliative care providers about the special contributions of palliative care trained, board certified chaplains so they give preference in hiring to those with these credentials which should result in more chaplains seeking those credentials. Hopefully the conference results can help in that regard 

But the other issue is developing the evidence base for spiritual care in palliative care. This conference made a huge contribution but the body of evidence is still very small and not yet at a level that should be considered persuasive. Getting over this barrier is a “chicken and egg” problem. Many funders, especially federal funders, want to see some “evidence” that this line of research is worthwhile but funding is needed to develop that evidence. We need to find courageous funders who will follow the lead of the John Templeton Foundation in building this field.

So is this a new day? Absolutely! Have we achieved our goals of developing the work force and the evidence base for spiritual care and chaplaincy care? No. However, I believe we have now answered the question of whether these goals can be attained. We need to push on because the progress will not happen of its own momentum.  But I think we now have a committed community to develop the evidence and the practice models and we have encouraged a lot of chaplains and researchers that this journey is important and worthwhile. Hopefully, we have also persuaded a few more funders and regulators to join the effort. 

Sunday
Mar232014

Remembering a Life Well Lived

The older I get the more I am in wonderment about how much of my personal and professional life has been shaped in marvelous and extraordinary ways by people who I came into relationship with seemingly by chance. That is, these are relationships I did not look for and if I had set out to choose someone to fill the roles that these people filled, none of these would have been my choice. I wouldn’t have thought any of them were a fit for what I wanted or needed. And then there were the many times I didn’t realize what need I had for someone like them.

Such was the case with Rabbi Pesach Krauss. Pesach died very recently at the age of 92 in his beloved Israel after a long and debilitating illness. He was 25 years my senior and would have put himself generally on the Orthodox side of the Conservative movement of Judaism to which he belonged. He had some very definite beliefs that he didn’t mind telling you about. He had been trained as a social worker but had no formal chaplain training. So not an obvious match for a much younger, liberal, Lutheran BCC.

And yet, some 30 years ago or so, he was assigned by the New York Board of Rabbis to represent them as the Jewish Chaplain at Memorial Sloan-Kettering Cancer Center. In that role, he and I spent some years sharing a very small, windowless, only partially walled office in the hospital basement. Over that time he became my valued coworker, my friend, and my mentor although he would have denied the mentor part because he would have thought he was not worthy of such an exalted title.

It would be easy to fill the rest of this post with Pesach’s “accomplishments”- his wonderful book (Why Me? Coping with grief, loss and change), his support for CPE at the Jewish Theological Seminary, the many rabbis who number him among the major influences on their rabbinic practice, and the fact that he was the first non-Christian on the clinical staff of what is today HealthCare Chaplaincy Network. But that would ignore what he was really about and the gifts he gave me. He approached all of life and everyone in it with joy, generosity, acceptance and what we in chaplaincy call “unconditional positive regard”. He could disagree with you and often did, but he would never stop accepting you, respecting you and caring about you- qualities that made him a superior chaplain. He was all of this despite some tragedies in his life that would have soured others. He suffered a traumatic below the knee amputation as a child but took that as a challenge to become an accomplished gymnast. He could and did still throw down a handstand in his 60s. His beloved wife died of cancer but he characteristically found another soul mate as gracious as he whose spouse had also died.

He was a man of abiding and deep faith in a comforting and loving G-d. He was devoted to the study of Torah. He was a consummate teacher- not of the “I’m going to tell you what to think” school but of the “I’m going to accompany you on the path to learning and then rejoice with you when you come to new understandings yourself” school.

And he was a person of conviction who knew what he wanted for his life. He said as long as I knew him that he and Joan would go to live in Israel and they would do it while they had their mental and physical health. And so, when he had a very transient and very minor stroke in his late 60s, he left the work he loved and went to the place he loved more. The last time I saw him was a few years ago when my wife and I were guests at their house in Jerusalem for Sabbath dinner. His mental processes had started to diminish but his kindness, generosity of spirit, and joy in life were unabated. He had taken up painting again and had had some works exhibited at the Tev Aviv opera house. It was a meal we will not forget. It was all about what faith and community should be about but so rarely are.

Even in death, Pesach continues to challenge me to be a better person and a better chaplain. His memory is truly a blessing to me and many others. 

Sunday
Feb232014

Palliative Sedation for Existential Suffering?

In the current issue of the Journal of Pain and Symptom Management, Ten Have and Welie have authored a lengthy but very articulate and thought provoking analysis of the ethical issues involved in palliative sedation especially in relationship to how the current practice of palliative sedation overlaps with or is even occasionally indistinguishable from what might be easily characterized as euthanasia. They point to a lot of evidence for what they define as “mission creep” in the use of palliative sedation as the force moving us in this direction. Since palliative sedation is increasingly common in the US, this article is a must read for everyone involved in end-of-life care.

One of the authors’ central points is that the published or assumed definitions of palliative sedation vary widely which is part of the problem. However, as a point of reference for those who may not be clear about what palliative sedation is, the authors quote the following which is pretty consistent with my understanding of the generally held definition.

 

The NHPCO describes palliative sedation as "the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable."  The scope of the NHPCO statement is limited to patients who are imminently dying

From the point of view of the spiritual care provider, this article raises a lot of issues of which I would like to focus one- simply characterized as the use of palliative sedation to treat existential suffering. Palliative sedation was originally used pretty exclusively to treat intractable and intolerable physical pain at the end of life. Part of the mission creep to which Ten Have and Welie refer is the tendency now to use it for pain in any domain- physical, social emotional or spiritual/existential. It is important to state immediately that many palliative care practitioners, including myself have argued that pain and suffering should be treated as symptoms of equal importance no matter from which domain they arise. This inclusiveness would lead to the logical conclusion that refractory and intolerable existential suffering could and should be treated with palliative sedation.

However, I would suggest that some of the criteria used to evaluate the appropriateness of palliative sedation, while suitable for dealing with physical suffering, may not fit as well when the suffering is existential.

One of these criteria is that the symptom must be intractable (i.e. refractory) to all other treatments for this condition. That is, palliative sedation is a treatment of last resort. Put another way, for any patient to qualify for palliative sedation because of existential suffering, it needs to be demonstrated that they have had all possible treatments for existential suffering. One of those treatments would seem to be assessment and treatment by a professional chaplain with the appropriate skills.  The problem is that in many settings, that “treatment” option is not available. So does that mean the patient gets to go directly to palliative sedation? I would think that, at the very least, the treatment team should be required to document that every attempt has been made to provide this treatment. And teams that anticipate using palliative sedation to treat existential suffering would seem to be obliged proactively to establish access to a professional chaplain. Even if the chaplain is available, how long a “trial” of treatment is appropriate before it can be concluded that the treatment has failed? There are no algorithms in spiritual care that would guide a team in this evaluation. Research is clearly needed here. Finally, what about drug treatment in this situation? Are medications used to treat physical pain also the options for treatment of existential suffering? Would drugs used to treat emotional distress or suffering be more appropriate?

Another criteria involved in palliative sedation is that the sedation needs to be proportional to the suffering. That is, the treatment needs to be titrated to the point at which the pain and suffering is no longer “intolerable”. In the case of physical pain, the goal is not necessarily to eliminate all of the patient’s pain or to put them in an unconscious state. The goal is to make their condition tolerable. Again, in physical pain there is the well known and tested 1-10 scale for pain severity. But what about existential suffering? Certainly one could use the same scale. And again what about drugs? It is not clear to me that using drugs designed to relieve physical pain, even if they are successful in that process, will have any impact on true existential distress. 

If one believes as I do that elimination of suffering especially in the context of advanced illness and at end of life is a central goal of health care, then there are clearly cases in which palliative sedation is the treatment of choice. That conclusion is likely true no matter what the source of the suffering. However, I am concerned that, since the “treatment” for existential/spiritual suffering is severely under developed and often not even available, the “mission creep” leading to palliative sedation will be more severe that even for physical pain. It behooves us who are charged with developing spiritual care to take this challenge seriously and fill this gap so that patients experiencing intolerable spiritual suffering at the end of life will have another option besides being drugged into unconsciousness.  

Ten Have, H., & Welie, J, Palliative Sedation Versus Euthanasia: An Ethical Assessment. J. of Pain & Symptom Management.  47(1), 123-136

Sunday
Feb092014

Advance Planning: More Than Care Decisions

There is much talk in health care, especially in the fields of palliative and end-of-life care about “Advance Care Planning”.  And rightly so. For those with advanced illness, this process is critical to patients receiving the treatment they want and only the treatment they want. The process done well clearly improves patient’s perceived quality of life, reduces the burden of suffering, raises patient satisfaction, and also seems to reduce overall health care costs.

For a medical treatment team, whether palliative care or other, the process often needs to be focused on decisions about health care choices. Those are our immediate concern and often those concerns truly need to be addressed in the very short term such as making decisions about resuscitation with an elderly patient suffering from heart failure and pneumonia.  

However, there is also a class of “patients” emerging who, while they have a diagnosis of HIV/AIDS or “terminal” cancer are not necessarily near death and, because of maintenance therapies that can often have very controllable side effects, look and feel fairly healthy. They can therefore do lots of “normal” things and lead a “normal” life. The other day I saw Magic Johnson on TV announcing he has purchased yet another sports team in LA. These people may not be so different from someone like me. I’m healthy for my age but will soon be at the age where I will be forced to begin accepting Social Security payments whether I like it or not. I clearly have a lot less of my life ahead of me than I have behind me.

In this situation, certainly the decisions we generally associate with advance care planning are critical. Under what circumstances do I want to be kept alive if I can no longer make decisions for myself and by what methods?  But as I begin to seriously engage this phase of my life, I increasingly realize that there are questions that go far beyond this which, if I engage them seriously, will make all of the life I have left more complete and fulfilled. The first issue for me seems to be that if there are things I want to do or a way I want to be sometime in my life, I need to be about creating that reality for my life now. And I can create much of that reality if I plan for it. However, this planning also means re-examining some assumptions about how I have lived my life. Do I really need the “security” of a steady job and is that security coming at a price that I no longer need to or want to pay because it is keeping me from other things I want to do? How many of my possessions would I really miss if I didn’t have them anymore?  Do I continue to need to own a house with the responsibility that brings or can we be free of it?

These are not simple or easy questions. I have no intention to ever retire in the normal sense.  I don’t even play golf and I don’t like either Florida or Arizona.I want to cook more and maybe learn Spanish. And I want to continue my professional journey down a road I still have intense passion for.

My point in all this is that, while advance care planning in the medical context is important, it is really only a part of a larger conversation. And this is not just about a bucket list either although that can be part of it. Ideally, it should be the end product of a much longer and intricate process of deciding how you want your life to be whether you have some idea of how much longer that life will be or not.

Certainly, for us as chaplains, I think we need to be much more intentional than we have been about engaging our patients and their caregivers in these larger issues for themselves. To the extent we can help patients explore whatever these kinds of questions are for them, we will help, not only make the decisions about Advance Care Planning, but create the lives that they want for themselves and those they love. 

Sunday
Jan262014

A Major Victory for Relief of Suffering

This past week, the Executive Board of the World Health Organization passed its first free-standing resolution dealing exclusively with palliative care entitled, “Strengthening of palliative care as a component of integrated treatment within the continuum of care”.

 The resolution in part urges member states to:

develop, strengthen and implement, where appropriate, palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost-effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes

 It also reiterates the WHO definition of palliative care as:

an approach that improves the quality of life of patients (adults and children) and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual;

 We in the US I think don’t pay much attention in general to the WHO which is unfortunate. The US is a member along with 193 other countries and territories. They are the major voice in world health policy. So to have this body speak out on this issue as clearly as this statement does is impressive. And some of the language will resonate with those of us who value ethical imperatives. For example:

Acknowledging that palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care

I think US readers will note in the resolution a heavy emphasis on physical pain relief and availability of pain medications, particularly narcotics, and with good reason. These medicines whose availability we take for granted in the US are at least rarely available and often not at all available in much of the world. And those places are often the same ones where no treatment is available for diseases like cancer so pain relief is the only option for care. We should also not take the somewhat tangential reference to spirituality lightly. That the word appears several times is a major victory as it would be if this were a document issues by a commission of the US government. We owe a significant debt to the people who advocated vigorously for its inclusion.

As important as this event is, my colleague Tony Powell in Nairobi reminds me that (1) the WHO General Assembly still needs to pass this resolution at its meeting in May  (2) the WHO is notoriously underfunded and can’t be relied upon to do much about implementing this on their own and (3) the WHO has no legislative power. So it can “urge” its member states to do something but it cannot mandate anything.

Even assuming the General Assembly resolution passes which does seem very likely, this is not the time for any of us who support this effort to sit back and assume that the further integration of palliative care will just take care of itself. On the contrary, it is a call to action to encourage all of us to redouble our efforts to take advantage of this opportunity lest it languish and eventually be forgotten. As we have seen in the US and elsewhere, the proliferation of models for palliative care which all include spiritual care has not meant that spiritual care is included in any palliative care program. 

But make no mistake, this resolution represents a major victory in the ongoing effort to end suffering caused by disease in all of its domains.  This resolution does mean I think that there is now a flag that all of us worldwide can rally around to make common cause on this issue with common language. This is an important milestone on this journey, but we are far from done.