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Tuesday
Jul292014

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. 

Friday
Jun272014

The Chaplain and Patient Experience

There may be no hotter concept in US healthcare today than “patient experience”.  Intuitively, who doesn’t believe that optimizing something called “patient experience” wouldn’t be a good thing? It also is one of the most misunderstood concepts because there is very little in the way of a commonly accepted definition or a commonly understood idea of what contribution patient experience is to make. Everyone has their own definition. Without a common definition of what it is and what it is supposed to contribute to health outcomes, it is very hard to measure. I generally use the definition promoted by the Beryl Institute which studies the concept intensely. They define patient experience as “The sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”

It would also seem intuitively obvious that professional health care chaplains could be and should be serious contributors to something called “patient experience”. And yet, again, it’s not clear to me that anyone knows what that contribution is. I have talked to several hospital administrators who have reassigned chaplains to report to their patient experience officer but really have no idea what they expect chaplains to contribute to that effort.

One way out of this issue for the moment is to look to the institutions that have clearly made what they would call patient experience work for them. There may be no better example of that than Cleveland Clinic. I was privileged to hear Dr. James Merlino, Chief Experience Officer at Cleveland Clinic, present recently at the Association of Professional Chaplains’ conference.  

Several points in his talk stood out for me.

Patient experience is not the same as patient satisfaction. Patient satisfaction is not unimportant and is a part of patient experience, but the end game is not to make every patient happy. It is to deliver high quality patient care. High quality care is, first, safe care and, second, care which improves clinical outcomes. As a consequence of those two outcomes, costs are reduced. Patient satisfaction was third on Dr. Merlino’s hierarchy of the outcomes of patient experience.

Patient experience has to be everyone’s business on all levels. Everyone in the hospital needs to be trained in and devoted to improving the patient experience in whatever way they can. That means there needs to be a climate that promotes patient safety in which everyone participates. It is not just the business of the safety officer to understand and promote safety. It is interesting that the Joint Commission in its standards for advance accreditation in palliative care makes the very same point.

In the Q & A after Dr. Merlino’s talk, George Fitchett asked what metrics Dr. Merlino would recommend for chaplains in view of this new reality. Dr. Merlino suggested that chaplains pick metrics which “bump up against” clinical outcomes. He specifically suggested anxiety and depression. That is, since anxiety and depression affect patient outcomes, if chaplains can affect anxiety and depression say by reducing spiritual distress, it can be said that we have impacted patient outcomes. This kind of evidence is already developing.[i]

For chaplains, this is still a brave new world. We were just getting good at demonstrating how we impact patient satisfaction only to be told that’s now only a marginally important metric. We have never seen it as part of our responsibility to be majorly concerned with patient safety but how can we justify saying that we shouldn’t be called to do our part to keep patients safe? And what about “clinical outcomes”? As long as the list of options here includes reduction of pain and suffering along with cure of disease, it seems we should be all in.

We as chaplains have long felt like we were not fully included or appreciated on the health care team. Dr. Merlino has called us out to step up with a clear direction and a clear purpose that is a fit for both our skill set and values and the expressed direction of US healthcare. He has called us out to be major contributors to the experience of our patients in ways we are well trained to do. My hope is that we as chaplains can see this for what it is. It is a call to be who we are, to make the contribution we have always wanted to make, but for maybe the first time to make that contribution as central players in the health care process. It’s time to answer the call.

 


[i] Gaudette H, Jankowski K. Spiritual Coping and Anxiety in Palliative Care Patients: A Pilot Study.  J Health Care Chaplain. 2013;19(4):131-139.

 

Wednesday
Jun112014

Global Network for Spirituality and Health Announced

To many of us, the growing emphasis on patient and family centered care and the growing realization that a more compassionate health care system is not only something patients value but one which saves money and improves health outcomes has shed new light on the lack of integration of spirituality at all levels of the system. Those levels include certainly talking to patients about their values and beliefs and incorporating them in the care plan. But also included is an appreciation for the values and beliefs of the practitioners and the spirituality of care teams and health care systems themselves. The work of Christina Puchalski in the US on Reflection Rounds and Ewan Kelly in Scotland on Value-Based Practice (both projects focused on physicians) highlights the need for this integration and the benefits, not only for the practitioners, but for the patients and the systems of care.

Moreover, the work of Puchalski, Kelly and others including Rabbi Michael Shultz in Israel begins to emphasize that these issues, while they almost certainly have culture specific permutations, probably manifest themselves to some degree and have importance in all cultures. The paper on outcomes in chaplaincy recently published by myself, Mark Cobb from England, Cheryl Holmes from Australia, Ewan Kelly and Shane Sinclair from Canada well demonstrates that the issues facing spiritual care and chaplaincy at least in the English speaking world are remarkably similar.

Many see this situation as a threat to the integration of spiritual care and chaplaincy. I agree that could be the case. However, this instability, coupled with the rise of patient centered care is also, I believe, a great opportunity to create a compassionate health care system in which spiritual and existential values and beliefs are central to the health care enterprise.

Over the past several years, an organized effort has been growing, first in the US, and now internationally to seize this opportunity.  As a participant in this effort, it has seemed to me at times like tilting at windmills. What hope do we have? However, the goal was too important to abandon. More to the point, the determination and vision of Christina Puchalski, Betty Ferrell, Bob Vitillo and others would not be denied.

And so now the effort is public!!! We suddenly have the trappings of a real movement. Thanks to the Journal of Palliative Medicine an article is just published which documents the progress to date of this effort including, maybe most importantly, a set of goals moving forward. The article is available free on the JPM website at http://online.liebertpub.com/doi/pdfplus/10.1089/jpm.2014.9427, but only free for a couple more weeks. This article sets the proposed roadmap for this effort going forward.

And the movement has a formal name (the Global Network for Spirituality and Health), a website (www.gnsah.org) and the beginnings of a structure. It has members from all over the world and funders who stand ready to support it. The draft aim is:

The Global Network for Spirituality and Health has been established to promote the transformation of health systems by integrating interprofessional spiritual care as an essential aspect of health, healing and compassionate, person-centered care.

So now this baby is officially born. But it needs to be nurtured and grow. This will be an “all hands on deck” effort. If it is to have any success at all, all of us who believe that health care should be more compassionate and more inclusive of spirituality must get on board and do our part. I would adopt a line I like from the Beryl Institute which champions the improvement of patient experience. The line goes “what have you done today to improve patient experience?” My version would be, What have you done today to improve the integration of spiritual care in your practice and the practice of your work setting?

 

Handzo G.  Cobb M. Holmes C. Kelly E. Sinclair S. Outcomes for Professional Health Care Chaplaincy- An International Call to Action. J of Health Care Chaplaincy: 2014: 20(2):  43-53. DOI:10.1080/08854726.2014.902713 Published online: 02 May 2014

Kelly E . Translating Theological Reflective Practice into Values Based Reflection: A Report from Scotland. Reflective Practice- Formation and Supervision in Ministry 2013:33: 245-256.

Schultz M. Lulav-Grinwald D. Bar-Sela G. Cultural differences in spiritual care: findings of an Israeli oncologic questionnaire examining patient interest in spiritual care BMC Palliative Care 2014:13:19 http://www.biomedcentral.com/1472-684X/13/19

Swift C. Handzo G. Cohen J. Healthcare Chaplaincy. In Cobb M. Puchalski C. Rumbold B. (eds) Oxford Textbook of Spirituality in HealthCare. New York, NY: Oxford University Press. 2012:185-190.

 

Wednesday
Jun042014

Is Spiritual Suffering Avoidable?

Recently, I happened to catch a short video on line of Patrick Ryan, CEO of Press Ganey.  He was saying that the task in creating a positive patient experience is to reduce suffering.  Now as a chaplain, I would certainly claim reduction of suffering as a central (maybe the central) task of our profession so I get it about its importance. I also support the premise that chaplains can be and should be central to improving patient and family experience in the health care system.  However, I have never heard the two tasks linked- even by a chaplain.

Needless to say, at the mention of “suffering” by the head of Press Ganey, Mr. Ryan had my attention. What is he going to do with this idea? Is he actually going to define suffering? How will he relate this to something a chaplain would do?

Well, he didn’t try to define suffering but he gave some good examples. He broke down suffering into “avoidable” suffering and “unavoidable” suffering.  In the “avoidable” category, Mr. Ryan placed issues like having to wait for a treatment, not receiving good information, and like issues commonly understood to be those which the system can do something about and which improve or diminish the patient experience. Put another way, these are issues that the system can improve with improved processes and improved training. 

His only example of “unavoidable” suffering was the disease state.  He seemed to mean that the system can’t do anything about the fact that the patient has cancer, for instance. Of course, on a spiritual/existential level that makes sense to me.  But then I started to wonder what bucket Mr. Ryan would put spiritual suffering in. My guess is the unavoidable bucket but that may be unfair stereotyping.

I think Mr. Ryan has opened up a very interesting discussion here- certainly as far as chaplains are concerned. Some may object to him hijacking the term “suffering”, and it does sound strange in this context. However, it also raises issues that are often dismissed like making patients wait to a new level of urgency and expands the domain of “suffering” within the context of illness. All of us presumably want to reduce suffering and, at least for most people who are ill, waiting is anxiety producing, thus suffering producing.  So suffering becomes clearly everyone’s responsibility because it is now more than simply something existential and patient experience, in so far as it impacts suffering, clearly falls into the chaplain’s scope of practice.

But the question then remains, what about spiritual/existential suffering? Mr. Ryan’s implication was that unavoidable suffering is- well- unavoidable. Thus it can’t be impacted. As a chaplain, if such a thing as unavoidable suffering really exists at all (a whole other discussion), I would certainly want to claim that spiritual suffering is not in that category. It is avoidable.  In fact, I would propose that the goal of spiritual care is to eliminate spiritual suffering. We will never get there of course, but why wouldn’t we want to try?  When I started in cancer care 35 years ago, the common wisdom was that many people with cancer were naturally going to be depressed because they had cancer. The implication was that nothing could be done about that. We have since learned very differently and depression in cancer patients is considered a highly treatable condition. Why not treat spiritual suffering the same way?  We know very little about how to do this, but if we don’t resolve that a lot can be done, we will never learn how. 

Sunday
May042014

There is Always Another Patient to See (Or a Meeting to Go To)

For those of us who took Clinical Pastoral Education in the US or Canada to prepare for certification as a professional chaplain, we know about the “action-reflection-action” model of learning. That is, you saw a patient- you reflected on how you interacted with that patient with your peers and/or your supervisor- and then you went back out and saw another patient- hopefully incorporating some of the insights you had just learned in your “reflection”. Now, for some of us (including me), this was not a straight line process. In other words, I didn’t always hear the learnings my peers were trying to give me or incorporate them well when I got to the bedside. But, over time, I think I improved. Today, this process would be called Continuous Quality Improvement (CQI).

The problem was, that like many other clinicians, this CQI process stopped the minute I left the training environment and got a job as a chaplain. In my first job, I was covering all the Protestant patients in a big urban hospital. In my second job, I was covering pediatric units in four hospitals. I did not have a peer group. My supervisor seemingly had no time to meet with me. And my employers were very clear that my only priority was seeing the patients. After I became a department head, the priorities changed to add show up at meetings and turn in reports to the still present seeing patients. Even now when I no longer see patients, the emphasis of my job is on “deliverables”.

The problem with this state of affairs is that we never improve our practice and my deliverables don’t increase in quality or even keep up with the times. Now I know many of my chaplain colleagues feel that their practice is just fine. They know how to relate to patients and families so just leave us all alone. And it is certainly true that, in many care settings, there are patients who need to be seen NOW. If a nurse calls and says that Mr. Smith is coding and the family is very upset, that is not the time to respond that you’ll be there when you have finished your reflection on your practice.

However, even if one believes that his or her clinical practice is perfect (or at least close enough), the culture and structures in which we operate continue to change around us and give us the choice of adapting (i.e.  improving) our practice or becoming increasingly irrelevant. I remember a time when hospitals didn’t have Ethics Committees and the term “palliative care” hadn’t been invented. In that era, many hospital administrators accepted the necessity of chaplains literally on faith. That era has clearly passed.

More importantly, we should all want to get better. It would seem that if we are truly committed to reducing suffering through caring for the human spirit, we should want to take every opportunity to learn how to do that more effectively and efficiently. And indeed many chaplains and others want to do this. But there is always another patient to see.

I have come to believe that there are at least two components to incorporating CQI into our respective practices- intention and structure. The intention means that we have faced ourselves and convinced ourselves that we need time in our day or week for reflection and learning so that we can do our jobs better, and that will mean that some number of patients won’t be seen or some report will not be finished as soon as it would have been otherwise and that is not only OK, it is the way it must be. Now if you are like me and you score off the charts on your “Achiever” side, this is not an easy conversion to make and it may remain a continual internal battle. And it is humbling because you find out that the world does not collapse if you don’t see those patients or finish that project as quickly.

So that is where structure comes in. The process improvement folks learned long ago that processes often fail even if the commitment and intention is there. The solution is to make the process as fool proof as possible. That is, the process should not be dependent on intention or even skill. Mandated continuing education as a condition for maintenance of one’s certification is an example of such a structure. I intend to spend a few minutes reading Scripture each day. However, as strong as my intention is, if I don’t impose the structure of doing it before I open my email for the first time each morning, the likelihood that I will do it at all that day is very small.

The point is that we can continue to improve our practice and I would suggest we have an obligation to our patients to do so. Becoming better at what we do is part of our commitment to our professions. But we need intention and unless your discipline is much stronger than mine, we need structure. Sometimes that structure is provided for us but we can also create it for ourselves. Yes, there will always be another patient to see or a meeting to go to, but that is not a sufficient excuse for not taking the time to get better.