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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. 


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.



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.    



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.


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. 


Getting to the Real Problem

We chaplains pride ourselves on being able to see and hear what’s happening in a given situation without presumption so that we can help patients and their caregivers understand the subtext of what is going on with them- especially spiritually and emotionally. We often quote Theodor Reik and say we are able to “listen with a third ear”. We try not to be hampered by stereotypes or categories.

There are problems with this approach of course. First, we don’t achieve this goal to the extent we would like to think, and in deluding ourselves on this point, we miss some useful information which a presumption born of experience and knowledge can lead us to. We fail to recognize that our presumption (diagnosis?) is often right and helpful in planning treatment. We also are unable to communicate clearly to the other members of our team because we use very general language that doesn’t help them meet the patient’s needs.

This all said, it is true that settling on a diagnosis too quickly without considering all other alternatives can lead to mistreatment.  One easy pitfall here that I’ve become more aware of recently is settling on a diagnosis that is true but does not represent or address the root issue.  One example most of us in health care would be aware of is the patient- child or adult- who shows up in the ER or doctor’s office with an injury and the story for how this happened doesn’t seem to fit or make sense. Any good clinician of any discipline would at least entertain the possibility that this injury is due to abuse or neglect and not simply diagnose a broken bone or contusion.

I recently read an article on how often elderly patients presenting with repeated infections, depression, or “wasting” might really be, at root, malnourished. We see more in the literature and news media about children who present with what appears to be a school phobia or avoidance of other social situations who are the victims of ongoing bullying.  The victim of a single car accident due, on the surface, to alcohol or drug use may be, at root, suffering from PTSD and be self-medicating.  In my own field, the evidence is increasing that some patients who present with anxiety or depression are, at root, suffering from spiritual distress that will not be effectively treated with medication. In all of these cases, the initial diagnosis is not wrong, it simply represents a symptom and does not represent the root cause of the problem.

Treating the symptom is not a wrong decision. The bone of the abused child needs to be set. Medically reducing the anxiety of the person with spiritual distress will likely make it easier for them to deal with their spiritual issues. And it is true that effectively treating the symptom often helps reveal the root cause.

However, this all does point up for any who are clinicians in any discipline the necessity to not settle on a final diagnosis too quickly. In doing root cause analysis, the quality improvement folks often employ a method called “the five whys”. There is nothing magical about the number but the idea is that, getting to a root cause most often necessitates asking “why” several times on the same issue to get down to the core of the problem.

Given the pressures of practice today in any discipline, it is too easy and convenient to settle on the obvious diagnosis or presenting issue and move on. We don’t generally get rewarded currently for a root cause analysis. In fact, raising a root cause issue has often been punished. Further, many of these root cause issues represent broader social problems like support for the elderly, care of vets or a culture that too often does not provide people with meaning and community.  However, I think the system is realizing the costs of missing a root cause- both to the patient and to the system itself.  The elderly patient who makes repeated ER visits that could be prevented by nutritional counseling and monitoring could save the system a lot of money. Thus, opening a senior center that provides meals and nutritional counseling might be a worthwhile investment for a hospital.

I am more and more convinced that we as health care providers need to break out of our traditional practice model which is restricted to seeing the patient in front of us, treating the presenting symptom or, in the case of chaplains, dealing with whatever the patient wants to talk about and moving on to the next patient. We chaplains often convince ourselves that if we listen to patients, respect them and affirm their situation, that is enough. However, we see the effects of some of the broader social issues in our clinics and our EDs. We see what these issues are costing individual patients and families and the health care system itself. It is time to share this knowledge in a more open way and join the conversation on how to provide treatment for root causes and not just presenting symptoms.