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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.



ISIS and the Crisis of Meaning

Recently, Paul Raushenbush, the religion editor for Huffington Post, wrote what was, for me, a very interesting post entitled ‘ISIS and the Crisis of Meaning”. He focused particularly on the US citizen killed fighting for ISIS, the self-proclaimed Islamic State accused of so much brutality against those who do not conform to their belief and practice. He wondered why this young man would leave the US and devote himself to this cause. His thesis is that this conversion and devotion, even to the point of dying, is about a search for meaning. It is about a search for some meaning that young men in this age group in many countries often do not find in their lives. In contrast, ISIS and many other groups with radical devotion to a cause provide very clear meaning and purpose and unwavering devotion to it. There is no higher devotion to a cause of course than being willing to give one’s life for it.

There is no doubt for me certainly about the centrality and power of meaning in our lives. While there are myriad definitions of “religion” and “spirituality” one of their commonalities is that meaning making is central to seemingly all of them.  One of the seminal tasks of a health care chaplain is to help people who are experiencing severe disruption of their system of meaning due to illness and suffering to recast their system of meaning to one which can incorporate the current facts of their life. This adjustment is often critical to enabling them to proceed with their lives. Sometimes the new meaning system doesn’t have to even be particularly positive. Apparently, being able to make some meaning out of one’s current circumstances even when that meaning doesn’t give one peace or happiness is better than not being able to make meaning of one’s current situation at all. So I have seen many patients who are comforted by the belief that their god is the cause of their illness just because their situation now “makes sense”.

But what about those who can find no meaning in their lives and feel compelled to literally give up their lives and cause harm to others in the cause of making meaning for themselves? What can we do even in the US to help those who do not have meaning in their lives to find it? I do not have the silver bullet of course, but certainly a first essential step is to recognize that the problem exists. So, it is all too easy and common to lay off the conditions that produce terrorists on others- as in this all has something to do with conditions in the Middle East. However, when it becomes clear that some significant number of these fighters are born and raised in first world counties, there is clearly something more going on. We have to be willing to ask the question, what is happening or not happening in our own country and culture that is producing ISIS fighters? What is missing for these young men of such a basic nature that they can be radicalized to this degree? When we start asking this question, there will be many who have “answers”.  My personal bet is that the answers have a lot to do with values such as compassion, mutual respect, forgiveness and dignity which are all too often in short supply. Any of these solutions that are reasonable need to be tried.  Those of us who know something about how to help people make meaning in their lives would seem to bear some special responsibility in this matter. 

This is not just about giving a few young men a better and more fulfilling life as important as that goal would be. If Mr. Raushenbush is correct, dropping bombs on ISIS fighters may temporarily deter this threat and protect some innocent lives, but it will not solve the underlying problem. Dealing with this crisis of meaning may be about nothing less than cutting down on and maybe even eventually eliminating a lot of the terrorism that seems to be increasingly plaguing our world.


Where Reason Ends and Faith Begins

In the New York Times, Sunday Review on July 26th, Prof. T.M.Luhrmann from Stanford University wrote a very provocative op ed piece entitled “Where Reason Ends and Faith Begins.”   

First to confess my bias.  During my ordination committee interview many years ago, I was taken to task and challenged as to my fitness for ordination because my undergraduate degree is in science (geology to be precise). So how could I be a good pastor if I believed in science? The pastor making this accusation was raised in the old Soviet Union where “science” was used as a weapon to discredit any kind of “faith”.

That said, starting with the title of the piece, Prof. Luhrmann makes a number of points which can at least imply a separation of science and faith and would be read by many to support the supremacy of science in that comparison.

The title itself implies that faith is unreasonable which in our culture equates with unscientific which equates with not of the highest value.  It implies that faith and reason don’t overlap and are never complementary or synergistic. 

“FAITH asks people to consider that the evidence of their senses is wrong.”

This is simply incorrect.  However, it is a common assertion in the part of the scientific community which wants to discount faith as a legitimate part of how many of us make sense of the world and assign causation to what happens around us.  Our senses observe what they observe.  What faith does is allow for additional sets of explanations for what those observations mean than are allowed by science.  The conclusions of faith do not necessarily contradict science or even discount science despite what some of our fundamentalist believers would propose.

 “God is invisible.”

Many people will see this statement as implying that since we cannot “see” G-d, G-d cannot be real in any sense.  The assertion ignores findings of whole branches of science such as particle physics which fully accepts the reality of a whole host of subatomic particles which are equally invisible and “unseeable.”

“Faith is conjecture.”

The implication is that science is certainty.  This is a commonly held but incorrect understanding of the basic workings of the scientific enterprise which is completely based on probability.  No good scientist would claim anything to be “true.”  If we operate within the classical bounds of the scientific method, there is still (admittedly very small) probability that the earth is flat.

However, all of these issues would be only a matter of interesting debate between Prof. Luhrmann and many others including me if it wasn’t for the negative consequences they have in the real world- especially the world of medical care that I inhabit. It is exactly these kinds of assertions borne of a culture firmly rooted in a flawed understanding of both the scientific enterprise and the workings of faith that have given us a medical system which elevates the “evidence” of scientific inquiry and totally discounts any “evidence” emerging from the processes of faith. It is exactly these kinds of assertions which have motivated many in the medical system to discount the role and potential contributions of the health care chaplain because they are “unscientific” and therefore irrelevant and even a distraction to the health care process.

If one wants to cross the “boggle line” in a hurry in any medical institution, just try asserting that we should consider a faith-based explanation for an occurrence even alongside one emerging from scientific evidence. Years ago, I had the audacity to nicely suggest to a physician colleague that the sudden and totally unexplained remission of symptoms in one of his patients could equally be explained as a miracle or as a very late effect of a drug given months before since there was absolutely no evidence that either explanation was correct. Needless to say, that contribution was not positively received.  However, the real critical point in this story is that the family of the patient clearly believed this was a miracle but they dared not say that to anyone on the medical team but their chaplain (me) because they were sure their belief would be devalued and considered ridiculous. They feared being considered ungrateful for the great care they had received.

At a time in health care when patients, family, and many staff want to integrate their faith and spirituality into health care and where the evidence for the benefits of that integration are becoming  stronger, pieces like Prof. Luhrman’s reinforce the separations between faith and reason. The reality is that most people in the US want to integrate their spirituality and faith into their care and into their medical decision making. And it is becoming clearer that health outcomes for both the patients and the health care system will improve if that integration occurs. For this process of integration to continue, we must have a health care system where faith and reason co-exist and the value of each in the healing process is valued and fully accepted.




The Miracle of Resilience

As a long time chaplain in a cancer center and, more recently, helping to develop best practice in spiritual care for veterans of combat, the topic of resilience has been an interest and a mystery.  The Holy Grail, if you will, of many researchers and mental health professionals in both of these fields has been to find a way to develop resilience in people so they are effectively immunized in whole or part against the psycho-social spiritual destruction of these life threatening illnesses or life threatening exposure to killing.

The good news here is that some people either have or develop this resilience and seem to emerge from these life experiences unscathed. So it is possible. The continuing frustration is no one has been able to figure out how to reliably duplicate whatever process is happening with these people in order to help others who are permanently scarred psychologically and spiritually- often to a devastating degree. We have had some success helping some who are scarred recover to some degree. Others seem to recover spontaneously through some mechanism which I certainly do not understand. However, others do not seem to recover at all.

Further, some not only recover from any wounds due to these events in their lives but emerge stronger. And others still are able to transform their experience and use it to become leaders in helping others. It is this latter group I have been thinking of recently as two people I considered extraordinary exemplars of it have died in the last couple weeks.

Dr. Jessie Gruman was diagnosed with her first cancer when she was 20. She survived that one and three others before her fifth cancer resulted in her death on July 14th at the age of 60. In 1992 she founded the Center for Advancing Health based in Washington and was its president until her death. She was a tireless advocate for evidence based practice and patient empowerment. Her blog and Twitter feed were sources of an unending stream of information on how to avoid or cope with all sorts of medical conditions. She also turned her experience into a book, AfterShock: What to Do When the Doctor Gives You — or Someone You Love — a Devastating Diagnosis, to which I was privileged to make a very small contribution. It’s the book no one wants to have to own but anyone who needs it is very glad to have. Clearly, Jessie’s resilience extended way beyond her own personal coping to making a significant contribution to people generally are dealing with health issues.

Dr. Yehuda Nir was born in 1930 to a Jewish family in what was then part of Poland- now part of the Ukraine. His father was killed at the beginning of the war and he survived by pretending he was Roman Catholic. His childhood is fully described in his memoir, The Lost Childhood. Today he probably would have been diagnosed with PTSD. His family eventually made it to Israel where Yehuda educated himself, was admitted to medical school and, astoundingly, became a child psychiatrist. For seven years, he was head of child psychiatry at Memorial Sloan-Kettering Cancer Center during my time there as pediatric chaplain. He worked every day counseling children with cancer, their families, and the staff who took care of them. More than his clinical skill which was brilliant was his calmness, his centeredness, his compassion and his kindness. Normally a person who has experienced this kind of trauma does well if they can survive in the absence of anything that would remind them of that trauma. Yehuda Nir not only worked constantly in it for years, he translated his trauma into a great gift for children going through a life threatening trauma of their own. Yehuda Nir died on July 19th at the age of 84.

Part of me wants to understand how the resilience of people like Jessie Gruman and Yehunda Nir can be taught to others in the same position. However, if we did that, we might stop appreciating what extraordinary people they were and how amazing their contributions were in view of what they went through to get to where they did. On balance, I think I prefer unknowing awe.