The Time for Spiritual Care Has Come- But With Obligations

It seems to me only yesterday that we in spiritual care and chaplaincy in health care were bemoaning the fact that there was so little literature in our field, no research, no guidelines, and the whole issue was destined to stay, at best, on the periphery of health care. That day has clearly past.  I recently had a conversation with George Fitchett in which he noted that it is now difficult to keep up with all of the quality publication that is being done in the field. 

There are certainly multiple causes for this change. The rise of palliative care probably leads the list because spiritual care is so prominently featured but interest internationally in the integration of spiritual care is also a factor. 

I prefer to leave the “whys” to others and focus on the “whats” and “so whats”.  In most cases while we have to understand the “what”, it is the “so what” that is critical for the practice of spiritual care. In the last few weeks at least three very interesting pieces have appeared or been announced- all of which deserve the attention of the spiritual care community. 

The recent article by Tracy and Michael Balboni and their team in Boston (Provision of Spiritual Support to Patients With Advanced Cancer by Religious Communities and Associations With Medical Care at the End of Life) published in JAMA Internal Medicine has understandably gotten a lot of press for its well-documented finding that the patients they surveyed  who were religious and who were well supported by religious communities used more aggressive care at the end of life and spent less time in hospice.  This result, if not counterintuitive, is certainly not what those of us who believe that religious community is a support to people would have hoped for. It appears that the medical teams have done a better job of meeting patient’s spiritual needs at the end of life than the religious community. 

The authors speculate on what is happening here and probably every spiritual care provider will do the same.  However, I think the “so what” here as Martin Montonye has helpfully pointed out on Linkedin is to see this as a research opportunity to be followed by a training opportunity.  The research doesn’t have to be that involved.  Most chaplains in acute care often see patients who are very religious and members of religious communities and who also are asking for aggressive care at the end of life.  Starting to document these cases, especially the reasons behind the requests wouldn’t be that difficult.  Then we need to find a way to aggregate our findings and start to discover some trends. In the mean time, it is important for chaplains to access and read the actual study- not the news reports of the study- so we can discuss it with our teams with full knowledge of what it actually says and does not say. 

The other two pieces to pay attention to are the revised Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life which is available for pre-order and the new English translation of the Spiritual Care Guidelines from the Netherlands available free online at http://www.oncoline.nl/spiritual-care. The stellar reputation of the Hastings Center in this area of expertise is well known and well earned. The table of contents of the new guidelines alone is enough to convince me that this will be a must read for anyone in spiritual care especially at the end of life.  These guidelines will be much discussed in palliative care and hospice teams and chaplains need to have firsthand comprehension of what they say in order to contribute knowledgably.  The quality and relevance of the Dutch work might be a surprise to many in North America. Yes, there are some differences in context and language usage.  However, in general, I think many of us in North America are missing out on a lot of excellent work being done in spiritual care and palliative care internationally.  The work of the European Association for Palliative Care is a prime example. These guidelines are aimed at physicians and nurses and will be especially useful in contexts where members of the health care team are willing to deal with the spiritual and existential domains but don’t think they should have anything to do with religion. 

So I haven’t answered George Fitchett’s implied question on how to keep up. Nor do I really have a good answer. I do know that finding ways to pay attention to the writing in spiritual care in health care is more and more critical to the practice of spiritual care and the ability to access and evaluate that literature is more and more critical to those of us who are spiritual care professionals as we seek to be increasingly integrated into the care our patients receive. 

Navigating the Changing Landscape of Health Care

Health care has become a world of dizzying change as more and more people realize that the current system is not working for anyone. There are new regulatory models, new care delivery models, and new funding models, but no one has the silver bullet.  Along with the increasing pace of change comes a flood of new concepts and terms to describe them, many of which are ill defined and themselves evolving.

Nowhere is health care changing more fundamentally than in how it regards the role of the patient in the process of care. Patient satisfaction has long been a standard metric for many health care institutions, but for many never rose above a “nice to have” next to the “must haves” of clinical effectiveness and financial viability. In fact, many thought patient satisfaction often got in the way of the other two goals because giving patients what will satisfy them was thought to cost money and slow down or even subvert the clinical process.

Then HCAHPS drove a change to “patient experience” – related to patient satisfaction but not the same. Experience is about how reliably a given process like pain control happens and satisfaction is about how happy the patient is with that process.  And finally we have arrived at “patient engagement”- a subset of “patient experience” perhaps but maybe the biggest change of all. Fundamentally, patient engagement requires that we who provide care involve the patient as a full partner in the planning and carrying out of that care. This change would seem to mark the official death of medical paternalism. But, it certainly feels like “selling the farm” to many.  How can good care result when we let those without training in the field have at least a vote in the treatment decisions and maybe even a veto? Certainly lots of people will make “bad” decisions.  

To those of us who are familiar with the history of how authority has operated in western religion, this debate has to sound familiar.  Arguably, the most far reaching change Martin Luther and other reformers brought about in western Christianity in the 16^th century is the idea that every Christian can have their personal relationship with God and can independently decide what they believe. This change was implemented in part by translating the sacred text of Christianity into a language that each believer could read or at least understand. For the most part, the authority of the ordained religious leader remained as the expert on belief and practice but that role became much more advisory than prescriptive.  The religious leader now had to convince the faithful that a certain belief or behavior was “right” rather than having the belief or practice followed just because the leader said so.

Modern professional health care chaplains have long been trained to operate in this advisory model. It has been for years against the codes of ethics and best practice in professional chaplaincy to tell someone what to believe or practice unless specifically asked for that advice. Patient engagement has been the standard of care. Those of us who have worked in this way for a long time are very comfortable letting the patient lead the conversation and reach their own conclusions about what their own religious or spiritual belief and practice should be even when they differ from our own and how that belief and practice can help them cope with their illness. In fact, this model of care seems to work better than dictating to the patient beliefs and behaviors which they then mostly don’t follow.

That experience of chaplaincy practice leads me to feel confident that true patient engagement of the kind professional chaplains have long practiced will in fact improve, not only the process, but the outcomes of health care.  Many will resist as many have and still do resist this model of chaplaincy.  However, I am convinced that professional chaplaincy can be a major facilitator of this necessary change and can help our patients and our health care colleagues embrace this new and strange but ultimately very beneficial model. 

Should Failure to Follow Preferences be a Medical Error?

This past Tuesday was the annual National Healthcare Decisions Day when patients are encouraged “to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” To be clear, this is not about getting people to agree to a Do Not Resuscitate order or agreeing to limit their treatment options if that is not what they want.  It is presumably an opportunity for patients to take control of their care at a time when they otherwise would not be able to do so. For those of us for whom religious beliefs and values inform and undergird these decisions, it is about taking advantage of an open invitation from a health care system which so often seems oblivious to those beliefs to make them known and document them in relationship to care decisions.  

In observing this day, Dr. Eric Widera offers a very provocative post on GeriPal (www.geripal.org). He cites a recent editorial by Theresa Allison and Rebecca Sudore in JAMA Internal Medicine and a related study by Heyland and colleagues investigating documentation of treatment preferences by a sample of elderly patients in Canada.  One of the most dramatic and disturbing findings of the study was that, for those who had stated preferences, over two-thirds of those preferences were either not documented at all or documented incorrectly in the medical record. This finding calls into serious question the basic premise of advance directives.  If one’s stated preferences are likely not to be observed, why even bother?

But Allison and Sudore up the ante even further when they state:

“Discussions about goals of care and code status constitute a medical procedure every bit as important to patient safety as a central line placement or a surgical procedure. Much as we have developed systems to improve patient safety in surgical procedures, we need to develop systematic approaches to discussing patient values and goals of care."

Dr. Widera then raises the obvious question, “Should failure to follow preferences be a medical error?”

For those of us who are not physicians, this could be an invitation for doctor bashing.  However, we need to all take seriously that patient safety is everyone’s responsibility.  So if this is about patient safety, we are all culpable.  But, even if this is not a patient safety issue, I would expect that all of us believe that patient’s wishes should be respected and every effort should be made to make that happen. 

The newly released 3^rd edition of the NCP Clinical Practice Guidelines contains the following criterion under Guideline 8.1. This criterion applies equally to all members of the treatment team.

“All expressed wishes, preferences, values, goals, plan of care, surrogate decision makers and advance care plans are routinely documented, including the completion of clinical orders such as inpatient resuscitation status, out of hospital do not resuscitate orders, and health care surrogate declaration documents for adult patients.”

So it seems to me the bottom line here is that all members of the treatment team are obliged, individually and as a group, to make sure that all stated treatment preferences and advance directives are well documented, well understood by the team, and observed. If the finding of this study turns out to be true more widely, all of us bear responsibility. Dr. Widera along with the authors of the editorial raise an interesting and provocative question.  However, no matter whether consensus ever develops around the answer to that question or not, the findings of this study should galvanize us all to action.  The findings point out that while getting patients to fill out their advance directives is a necessary first step, there is another necessary part to the process which may be seriously broken.  Each of us needs to be committed to point out that brokenness each and every time we see it.    

Replacing Negativity with Caring and Compassion

In her most recent newsletter, patient experience and communication’s expert, Wendy Leebov, presents a point of view I share.  In her lead piece (Wendy’s Soapbox), she discusses her belief that physicians often get a bad rap when it comes to their communication skills and that people often imply that they intentionally behave in an insensitive manner http://www.quality-patient-experience.com/support-files/wendy-leebov-heartbeat-52.pdf.  She gives examples of those who start any and every conversation about the health care system with doctor bashing- talking about how badly they have been treated. She quotes a talk show host she appeared with who started the interview by saying, ““Wendy, don’t you think doctors are really HOPELESS?”. Instead of going down that road, Wendy and a colleague have written a new book, The Language of Caring Guide for Physicians, to help physicians with communications issues.

Likewise, Toby Cosgrove, CEO of Cleveland Clinic, shared a video on empathy with his staff during his annual report  http://www.youtube.com/watch?v=cDDWvj_q-o8. This wonderful video encourages his staff to see patients, family members, and even colleagues in the light of what may be happening in their lives- positive and negative- rather than through the negative lens which so often assumes that the other person is being intentionally obnoxious or just acting badly for no good reason. To stand in the other’s shoes.

All too often we attribute negative motivations or at least thoughtlessness to our colleagues. It is often tempting to tell “war stories” about how badly our health care system is functioning and attribute much or all of that dysfunction to those in the system who don’t treat patients or each other well when we presume they clearly know better.  We fall into the classic mistake of blaming individuals for the problems in the system rather than the system itself. 

To them I want to say, yes, we all know the system is broken. We all know that very often communication between health care providers and patients and between providers and other providers is not handled well.  However, telling these stories that often draw sighs and knowing nods from our listeners does not contribute to fixing the problem.  In fact, I suspect it just makes the problem worse because blaming people or even disciplining them by itself does not help people change.

I think that, at least in part, the message that Wendy Leebov and Toby Cosgrove are trying to send is that we should presume no one wants to act insensitively or communicate badly.  We should presume that everyone who goes into health care as a career wants to be compassionate and communicate caring for their patients and their colleagues. We should presume that what is broken in the system is not the people but the system itself. One of the mantras of quality improvement that is well documented in the research is that the primary cause of most error is not the employee’s lack of desire to do something right, but a lack of training. Often we think or presume adequate training has been provided when, in fact, the training was ineffective or absent all together.  A good example from my own discipline is that most people presume that all clergy must get training in counseling and providing spiritual care including some training in how to visit in hospitals.  This presumption is absolutely false.  And yet, at least in part because of that presumption, we expect a level of performance by these clergy in stressful health care crises which is totally unwarranted and unfair because they simply do not have the training and then we blame them personally when clinically sensitive behavior is not forthcoming.

With that presumption of good intention, we should be looking for ways to help our colleagues be the compassionate and communicative health care providers we presume they want to be. Thus Wendy Leebov’s new book and Toby Cosgrove’s video.

Telling and retelling stories that cast blame on individuals does not help.  Finding ways to make the system better is the way to go.  For us as chaplains, these interventions often can occur on a very personal level.  Witnessing or hearing about an incident of less than excellent communication or caring often incents us to seek out the person on the receiving end of that communication, especially if it was the patient, or even to report the “offender” to their superiors.  But how often to we seek out the provider who gave the communication, not to blame, but to offer our help and understanding?  For us as chaplains, this can often be listening to them vent about the stresses of their job or even an issue in their personal lives which is influencing their job performance. In the process, we might discover that the provider simply doesn’t know the best way to communicate and is open to learning.  That discovery can then lead us to training needs or process improvements we might propose to institutional administration. All of this can be done not in the spirit of “I know how to do this right and you don’t” but in the spirit of “we are all in this together and I want to be helpful”.

At the end of the day, the goal is to cease the negativity which only tears people down and helps no one, and focus on how we can ourselves act in a caring and compassionate manner which will, I believe, bring caring and compassion in response. 

Turning Death into New Life- An Easter Tale

In opening the Easter service in my church yesterday, the pastor reminded the congregation that Easter is centrally about turning from death to new life.  He pointed out that this is not only about what we, as Christians, believe God did for us through the death and resurrection of Jesus in overcoming death, but a lesson we can use elsewhere in our lives.  He reminded us that many in Newtown, our cross-county neighbor, have been able to turn the horror of the death that was visited on them into a focus on new life.  They are certainly not in any kind of denial about the pain and suffering they continue to feel, but many have been able to focus on the blessings and gifts that they still have in their lives. 

And this example is seen lots of other places in our lives.  For those of us who work in health care, we almost daily see patients and their loved ones who are confronted with tremendous suffering. Some become bitter and angry, but others genuinely acquire a greater appreciation for parts of life they had previously taken for granted.  What is still unknown is what causes individuals to turn one way or the other.  For those of us who are chaplains, we look for what parts of spirituality or religious belief support this kind of resilience and what parts impede it.

In this search, case studies are important. They are each unique of course but they each give us powerful insights into the ways some people live life to the fullest in the face of suffering and death and others give up on life almost completely. 

Those of us who attended the recent AAHPM annual assembly were treated to a plenary by David and Deborah Oliver which I, and I know many others, felt was not only highly educational, but awe-inspiring.  David has been living with stage 4 cancer. He and Deborah have “gone public” with virtually all aspects of their journey- both the struggles and the triumphs. But what impressed me more than anything else is their determination to live their lives in all the fullness they can muster including family, friends, travel, and each other.  They are determined to find joy and fulfillment in their lives and, because they keep looking, they find it in abundance. There have certainly been trials along the way mostly with the medical system which are also instructive and well documented.  David is determined to keep control of both his life and his death.  His “HOPE” for dying is:

(H) to die in my own home

(O) surrounded by others

(P) pain free

(E) and excited about living

 Many of you may already be familiar with David Oliver from his series of YouTube videos (http://bit.ly/10szL2g). He also has an ebook out called, Exit  Strategy: Depriving Death of its Strangeness that is available on Smashwords. Whether you are a veteran in the field who can always learn more, someone just entering health care, or a patient or caregiver yourself, both David’s videos and book are must sees.