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Saturday
Dec132014

Getting the Evidence for Health Care Chaplaincy

A common refrain from many of my health care chaplain colleagues in response to any new study, case report, or consensus document on health care is “why weren’t chaplain’s mentioned?” or the variant, “why wasn’t spiritual care mentioned?”  Favorite targets recently are any reports on the recently released Institute of Medicine (IOM) document, Dying in America. Now, granted, if any report on any phase of health care should prominently include a discussion of spiritual care and chaplaincy care it should be a report on how people die and how that process could be improved. However, much of the commentary on these reports in general, and the IOM report in particular, highlight several issues that often characterize these responses.

The implication of some of the chaplain commentary is that because chaplaincy was not mentioned in a given presentation or not mentioned prominently, there must not have been anyone with chaplain experience on the panel (untrue in this case) and there is no real mention of chaplaincy in the report. In fact, if all the mentions of chaplaincy in this report are cut and pasted to a single document, that document is 12 pages long in 12-point type (thanks Brian Hughes).  The lesson here is we need to be sure to do our homework before we comment. To be clear, I have been known to shoot from the hip with the best of them, but we chaplains need to recognize that it doesn’t help our credibility to not read and think before we speak. To assume we have been left out yet again is, thankfully, increasingly incorrect. And, in the case of this document, that assumption does a significant disservice to a good number of people on this panel who absolutely believe in spiritual care and chaplaincy care.

The commentary also often belies a lack of understanding of how some of these processes work. In the case of the IOM and other bodies including the National Quality Forum (NQF), the credibility of their reports is based on their strict adherence to a policy of not including anything that is not supported by evidence. In other words, like it or not, these are processes based on science. It is a very simple equation. No evidence = no mention. On the individual level it means no experience or history doing good science in this field = no seat at the table. Again, to comment without a full awareness of this fact suggests that we chaplains don’t do our homework and therefore lack credibility.  Fortunately, what constitutes evidence is broader that many of us usually understand which is why there is so much in the IOM report about chaplaincy.

But finally, my irritation with all of this is that virtually every comment I see about issues like this from chaplains stops with the complaining. We all know we are underrepresented at these tables. The commentary almost always stops short of adding “and here is what I plan to do to help make sure this eventually doesn’t happen” or “here’s what I am doing or plan to do to help develop the evidence.” Kristin Baird, a leader in patient experience consulting has often said something like, What have you done this week to improve patient experience? The chaplaincy equivalent is, What have you done this week to develop/disseminate the evidence for the efficacy of chaplaincy?  This is something every professional chaplain should be doing in some form. The first step is to know what the evidence is. This is a matter of reading including at minimum the J of Health Care Chaplaincy, the J of Pain and Symptom Management (borrow a copy from your local palliative care doc or RN), PlainViews, and the blogs PalliMed and GeriPal that are free on line. Then we all need to do a much better job of writing. It can be as little as a 2-3 line comment on PalliMed, or an article for PlainViews or a piece for the hospital newsletter which discusses some new study supporting spiritual care. And we need to speak up and educate our teams about what the literature says and what the standards are and support quality improvement and research projects that help extend this evidence.

And while we may not lead research projects, we need to go out of our way to participate in them when we have the opportunity. Recently I heard from two chaplain colleagues who have gone out of their way to write a research protocol testing an online support structure for chaplains and get it approved by their IRB which is no easy task, only to have trouble getting our colleagues to volunteer to participate.

A request to all chaplains. Please from now on refrain from writing anything about chaplains not being included in something. We already know that and the reason why which is that chaplains have not attended sufficiently to developing the evidence and the best practice that support our inclusion.  So instead of writing or talking about what is not happening, we all need to spend that time finding ways to develop and disseminate the evidence and integrate it into our practice and tell each other about it in writing. And I would ask everyone to hold me to that standard as well. 

Saturday
Nov222014

Integrating with Palliative Care- Opportunities and Challenges

Recently, I attended the yearly National Seminar given by the Center to Advance Palliative Care. I was honored to be a member of the faculty and on the planning committee. The attendance was over 900- up over 50% from a year ago- a tribute both to the growth of palliative care as a discipline and the respect with which CAPC is held in the palliative care space. This is the place palliative care nurses, doctors and administrators come to find out about best practice in the field from medical issues, to business models, to integration of palliative care into virtually every possible setting on the health care continuum. As Dr. Diane Meier, head of CAPC pointed out in her opening talk, palliative care has now gone from being an innovative practice to standard practice- at least in hospitals. It will soon be unusual for a hospital not to offer palliative care.

Maybe most importantly, palliative care is about caring for the whole person in all dimensions- including the spiritual. Every palliative model includes the mandate to attend to spiritual suffering. The Joint Commission’s advanced certification process in palliative care mandates a chaplain on the palliative team and will likely soon mandate that the chaplain have suitable training. Everywhere I went at this seminar, I heard spiritual care mentioned and included. This was a rare event in health care where no one looked quizzically when you said you were a chaplain, as if to ask “why are you here?”

Given this environment and context, the lack of chaplains was glaring. One of the Tweets from this event, posted by a physician, said simply “Where are the chaplains?” The attendance roles put the number of chaplains at 1% of the total attendance (i.e. about 10). Now, to be fair, the number of social workers wasn’t much greater, but this is still a problem. We as chaplains have rightly complained for years that we are not included- to the detriment of patient care. Now we have a setting that represents maybe the fastest growing discipline in health care and loves to have us, and we are not showing up. On top of that, this event is a phenomenal place for chaplains to learn about how we might add more value to the palliative care enterprise. So this is not just about giving. It is about getting at least as much as we give.

The barriers are mostly pretty obvious. This seminar is not cheap and going likely means not going to something else like the meeting of the chaplaincy body that certifies us. Many chaplains who cover palliative care do not do it full time so there are other responsibilities. Chaplaincy staffing is generally so tight that being aware for 3-4 days puts a burden on our colleagues and on the institution. We all know all of these barriers.

But there are opportunities. Several of the chaplains I did meet at CAPC came at the behest of and at the expense of their institutions who now highly value palliative care and understand how central spiritual care is to that endeavor. My guess is that more chaplains could make the case to their administrations that they should be funded for CAPC. My guess is that many administrations (and many palliative care chaplains) don’t appreciate the opportunities the CAPC National Seminar provides to further integrate spiritual care into palliative care. However, more and more hospitals are seeking Joint Commission accreditation in palliative care and are then trying to figure out how to get chaplaincy included in a way that will pass this process.

So I don’t have any magic answers. My only plea to chaplains involved in palliative care is when the CAPC notice comes around next year; don’t just reflexively press the “delete” button. And, by the way, I could have written this exact post with reference to the convention of the American Academy of Hospice & Palliative Medicine that will be in Philadelphia in February. Hope to see lots of my chaplain colleagues there. 

Tuesday
Nov042014

Suffering is in the Eyes of the Beholder

A recent morning brought the news that 29 year-old Brittany Maynard had ended her life rather than continue what she perceived to be intolerable suffering from an incurable brain tumor. About an hour later I watched a sports report on college freshman, Lauren Hall who the previous day fulfilled her dream of playing in a college basketball game on the team she had been recruited for despite the fact that her doctors said she had only weeks to live as the result of an incurable brain tumor.

Although my only knowledge of these two women is what I see in the media, I was first struck by the similarities between them. Both young, white women with incurable brain tumors who seem to have good social supports, no psychological issues and would seem to have had the opportunity to have access to some of the best health care the world has to offer. Both seem to be in full control of their own lives despite their tragic diseases. Despite all of those major similarities, they seem to have opted to take starkly different roads to their own death.  To be clear, I am not implying anything about the goodness, badness, rightness or wrongness of either road.  Quite the contrary.  My point is the difficulty of determining the right and wrong for any given person despite so many similarities or of making judgments in that regard. One of the lessons I continued to relearn as a chaplain with people with terminal cancer is how ways of approaching the end of one’s life that seemed “wrong” to me gave great meaning and comfort to some patients who chose them.

So what is going on here? My suspicion is that a key issue is how each of us defines and understands “suffering” in our own lives and the lives of others. The reports on Brittany Maynard focused on suffering from physical symptoms. Yet, Lauren Hill suffers from many physical issues. In Brittany’s case, that suffering was at least portrayed by the media as dominating her life and her decision making. In Lauren’s case, that suffering was seemingly put aside and diminished in significance in the service of another goal. Why the difference? Social or psychological factors don’t seem to account for it.

Dame Cicely Saunders taught us many years ago that pain (and suffering) exists in four domains. The one unaccounted for here is the spiritual or existential domain. This domain includes the part of our lives in which meaning making resides.  So the degree of any one person’s perceived suffering may not be at all correlated with the intensity of pain in the physical, social or psychological dimensions.  That correlation may depend on the meaning of the pain or distress.  I have seen many patients for whom physical pain actually reduces their suffering because they believe that any physical pain negates some amount of sin thy have committed and thus brings them closer to being granted eternal life in heaven. Other patients take great comfort from the belief that their illness is caused by their God because it proves that this God is still in control and it is the idea of that control that gives them comfort in their lives. Neither of these beliefs matches my belief system but they clearly reduce suffering for many

I would submit that the spiritual/existential dimension has more power over how we make decisions about how our lives will come to conclusion (when we are allowed that decision) than is commonly appreciated. Further, as little as we understand the physical, social, and psychological dimensions of suffering, we understand the existential/spiritual dimension far less.

I have no idea why Brittany Maynard and Lauren Hill have apparently taken such different paths and I don’t think I or maybe anyone can ever truly know because only they can appreciate what constitutes “suffering” in their lives and where they each find meaning and comfort. For others to make judgments about the degree of their suffering and how it could be/should be coped with is dangerous territory indeed because we know so little about it and virtually never include it in the calculus of how health care is delivered.

The point here is not to come to this understanding in order to be able to guide all people facing deaths terminal illness to some “best” outcome. The point is to be able to better understand the existential/spiritual dimension and incorporate it in care in order to help patients to the decisions that seem best to them and to make the living out of those decisions possible. Maybe we can come to the day when patients will make informed decisions about what best reduces their suffering and live those decisions out so routinely that it will not be a matter that warrants national news coverage.

 

Thursday
Oct232014

Spirituality + Religion? Spirituality vs. Religion? Spirituality Includes Religion?

Discussion around spirituality and religion are more evident and public in our academic circles and in our society in general. A good thing I believe. A stroll through my Twitter feeds this morning yielded an article about a legal challenge in New York State to the tax exempt status of a pagan group presumably in part over whether they are really a religion and yet another article on this much examined group in our society called “spiritual but not religious” which utterly confused and conflated “spiritual but not religious” with “unaffiliated”.  In research circles, there is ongoing debate about how we define what these concepts are that we are going to research. In the US military, there is much heated debate about whether service members should be allowed to list “humanist” as their religious affiliation.

Ken Pargament and his colleagues published an article on sorting out the definitions of “spirituality” and “religion” which was subtitled “Unfuzzying the Fuzzy”. A worthy goal for sure but one that, in this case, is not going to be easily achieved as testified to by the fact that the article was written 17 years ago and the debate seems to go on unabated.  As a health care chaplain who has been privileged to discuss these issues with people trying to find the role of spirituality/religion in their lives in the midst of severe crises, I believe we have to be more transparent about the idea that this discussion has some very powerful underlying issues.

These concepts touch a part of many of us that is likely at the core of who we are as human beings.  It is a core that is certainly described in many of the definitions but its power is often underappreciated. Even those of us actively engaged in the debate or the research or the discussion often underappreciate the power of these concepts in our own lives. Thus this is a discussion that very few if any of us can be dispassionate about. That is OK as long as we are honest with ourselves and others about it. Good science doesn’t require that the scientist be without bias or passion. It only requires that the bias be acknowledged. 

A corollary of this centrality is that this debate is often played out as a zero sum game. That is, if your definition of spirituality “wins”, mine “loses” and, in this case, that “loss” feels like it invalidates a core part of who I am. In chaplaincy, we have long tried to teach students that accepting the beliefs of others does not invalidate your own beliefs.

Yes, there is some fuzziness that we can deal with by good research. For instance, good research on who the “unaffiliated” say they are has already discovered that, while they do not belong to an organized religious group, they often do believe in God and even define themselves with a denominational label. So this is a commentary on the perceived relevance of organized religion in our culture but not on a basic shift in how people see themselves.

I am also called back to the work of Thomas Kuhn in The Structure of Scientific Revolutions on how paradigm shifts occur.  Particularly, Kuhn points out that during such a shift, there is a time in where the old paradigm is acknowledged to be flawed but no new paradigm is apparent.  That neither/nor is going to cause discomfort that  is going to drive a search for a new paradigm. We may or may not be in what could really be called a paradigm shift with regard to our beliefs and attitudes about spirituality and religion. However, it might be helpful to think of it that way to help us normalize these tensions. 

As I approach these discussions, it is helpful for me to keep a couple things in mind. First, this discussion is not just a nice intellectual exercise. It involves some concepts that I may feel challenge some very basic parts of who I am and how my view of the world is structured.  That is scary and can make me defensive if I am not conscious of the issue.  Second however, this discussion can and should produce a “win-win” rather than an “I win- you lose”. Therefore, I should remember to not allow others to make me feel that I am “wrong” on a spiritual/existential level and I should try hard to avoid putting others in that position.  The goal for me is to separate the academic and societal discussions on these topics that we need to have from any implication that causes people to feel attacked personally.    

 

Sunday
Sep212014

Dying in America

As I assume everyone involved in health care in the US knows by now, the Institute of Medicine (IOM) recently issued its latest report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Any time the IOM issues a report of this depth, it is news. However, this one may be more newsworthy than most because it deals with an experience that will impinge on the life of every human being- dying.

First, it is critical to thank all of those involved in producing this most thoughtful and thorough document. Having been on consensus panels of much smaller magnitude than this, I can begin to guess at the effort and attention to detail required here. Even in a 500+ page document every word is important and my experience is that being a part of one of these panels often seems to produce more critique about using the wrong words or leaving out words than appreciation for the phenomenal contribution to the cause. And we tend to forget that all of these people have day jobs. We owe these panelists and reviewers a tremendous debt.

This is not a full review which I will leave to others partly because I have not read the whole document myself. I do want to comment on a few issues raised in the recommendations that have particular relevance to my profession of chaplaincy.

The Inclusion of Spiritual Care and Chaplaincy

Dame Cicely Saunders long ago proposed that what we now call palliative care deal fully with four domains- physical, emotional, social and spiritual- and that all four be equal in importance. Nevertheless, all too often in modern palliative care the spiritual dimension of care is not given equal billing or is even absent. That is clearly not true in this document where the spiritual dimension and chaplains as the leaders in providing spiritual care are clearly and repeatedly acknowledged. While it would have been nice and proper to have a chaplain on this panel, it is remarkable that we have reached a day where there doesn’t need to be a chaplain at the table in order for the spiritual domain and chaplaincy to be fully included.

While the panelists and reviewers should receive a lot of credit for this inclusion, it is important to note that they could only include published evidence. None of this could be their own opinion or experience. The evidence could be research, regulation (e.g. Joint Commission or professional association standards), or guidelines (e.g. National Consensus Project). The evidence had to be there and the panelists and editors had to judge that it was of high enough quality to include. Kudos to all of those who have contributed to the effort to develop this evidence in and out of chaplaincy.  This shows that the effort is worth it and needs to continue.

Recommendations

The report includes five extensively described recommendations. There are parts of the recommendations that chaplains are already strong in and some where we can make significant improvement.

Not surprisingly the report finds issues with the quality of conversations between providers, patients and family care givers and lack of training to hold those conversations. This is a place where chaplains are strong but we could do more to be leaders on our teams and teach our skills to others. We also have the recommended established competencies for palliative care chaplaincy but our professional associations have not done nearly all that they could to promote them and make them the standard that this report calls for. The report points out how most training is discipline specific and fails to include specific training in palliative care. Chaplaincy is guilty on both counts. If we expect professional chaplains to be the spiritual care leaders on palliative care teams, we need to train them for that role which we currently do not.

Finally, the report recommends the promotion of public discussion of the issues around palliative care. Chaplains, with our often close connection to the faith communities, are ideally positioned to encourage these discussions. While some of us do this occasionally, we don’t leverage our relationships to religious and spiritual communities nearly to the extent we could to promote this conversation so that individuals and families come to some understanding and clarity about these issues before they are in a health crisis.

 All in all, lots of good news here for spiritual care, but also some significant challenges for chaplains.