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Tuesday
Jan202015

Reflections on the For-Profit/Not-For-Profit Debate

The recent series of articles in the Washington Post on the relative strengths and weakness of for-profit (FP) vs. not-for-profit (NFP) hospice has produced a lot of emotional response and some insight. However, in many people’s opinion, the Post pieces have not been the most objective and have been biased toward presenting FP hospice in a negative light. As is usually the case, bias in a report does not lead to objectivity in the discussion. There are a couple of issues to my mind that have either not surfaced or not been given enough attention.

This is not a new issue in health care. Long term care in a number of states long suffered from unscrupulous operators who took advantage of their relatively defenseless “customers” to make a profit. It should be noted that some of these operators ran FP operations and some ran NFPs. This point is not to excuse those who may take advantage of the dying in the same way but just to point out that this is not something particular to hospice.

Demonizing for-profit health care is simplistic and unhelpful to the debate. There are clearly good and bad actors on both sides.  FPs who are mission driven (and there are many) often provide state of the art care as well as pay off investors. Successful companies in all fields are successful exactly because they both satisfy their customers and reward their investors.  There are many NFP hospitals now owned by FP companies that have not missed a beat in continuing to provide patient-centered care. Yes, NFPs can do fund raising but, put simplistically, fund raising and raising capital are just two different ways to raise cash. Neither one is inherently good or bad. Its what the cash goes for that counts.

Even though chaplaincy is unreimbursed and not clearly a revenue generator or cost saver, I know some for profit hospices which provide the most professional, best trained (and therefore most expensive) chaplaincy and I know some NFPs that provide the cheapest and substandard chaplaincy just so they comply with regulations.  

The big issue that I have heard peak its head up but not be seriously addressed is the issue of quality of care. The Washington Post has framed the debate by at least implying that the quantity of care is positively correlated with the quality of care. They strongly imply that spending less nursing time on a patient or not sending a nurse to visit over the last two days of life is substandard care just by virtue of it being less care. This claim invokes a classic US premise that More care is necessarily Better care. It is this premise that is at least partially responsible for the US spending so much on health care but having less than optimal results. We are starting to learn and palliative care is teaching how false this premise can be. Do we know that having a nurse visit in the last two days of life is “better” care? We don’t. Is this even what patients and families want and need? We don’t know. And maybe the “pain” is social or spiritual generating anxiety so maybe the visitor should be the chaplain or the social worker.  We don’t know that either.

I believe that a major reason why quality is not discussed is that quality measures are not used in much of US health care and often we do not even know what a quality measure would be in a given context. We are getting better and some recent findings indicate that less care can even lead to, not only better QOL but to longer life, but we have a long way to go.

The more is better premise is also common in chaplaincy. A lot of us still work on the basis that the more we visit a patient the better without any real evidence for (1) whether the patient even wants this and (2) whether we are accomplishing anything positive. We are nice people and patients like us but do we “help” and what does help mean in this context?

It is on the basis of agreed upon quality measures that hospices ought to be compared. The only question should be does the particular hospice deliver quality care (effective and efficient), not whether it is FP or NFP. We often claim we don’t have time for quality measures and even sometimes imply that we deserve to be trusted because we are good and honorable people in this for the right reasons.  But that is no longer good enough. Our patients deserve better no matter what our business model is.

 

Friday
Jan022015

The New Year for Health Care Chaplaincy

Recently, I’ve been asked in several settings to address the question of the future of health care chaplaincy. In each case, it was either implied or explicitly stated that the question arose from a real fear that professional health care chaplaincy was fundamentally endangered as a component of US health care. I frankly find it very odd when I’m asked the question in this way. Maybe the fact that I’ve worked in health care chaplaincy for close to 40 years gives me a longer view than others, but I’ve never been more optimistic about the future of professional chaplaincy than I am today, and I have never been known as a person who underestimates the downsides of situations.  

But what about all the places where chaplaincy budgets are being cut? And what about the chaplains who can’t find a job? Yes, certainly those exist but it is also true that the line of chaplains crossing the stage at the Association of Professional Chaplains convention to receive their certification grows longer every year. It is true that the business case for including professional chaplaincy grows stronger by the year. I recently did a paper on the state of the science in the efficacy of chaplaincy and had over 70 references. So it is no longer correct to say that there is no case for professional health care chaplaincy.

I am convinced that the road to further successful integration of chaplaincy care in health care in the US is a fairly straightforward one- at least in theory.  (1) It is very clear that palliative care is becoming, not only a fully integrated specialty in health care, but also a part of generalist education for all practitioners. It has now been shown to positively impact health care cost, patient satisfaction, quality of life, readmissions, and even length of life in some illnesses. (2) Every model and set of guidelines for palliative care in the US and internationally includes spiritual care as a required component and most of those include the professional chaplain as the spiritual care lead on the team. (3) As mentioned, the evidence case for the inclusion of spiritual care is quite solid and the case for chaplaincy is significant and growing rapidly. 

I am not suggesting that palliative care is the only path for integrating spiritual care in health care. However, it is one that is certainly going to yield positive results across almost every segment of health care in the US. It is where I am putting my time and energy going forward.

So why is chaplaincy not growing faster than it is and why are chaplaincy budgets cut in some places and chaplaincy positions eliminated?  First, let me be very clear that budget cutting and layoffs happens even to chaplains who have the best training and do all the right things in terms of integrating chaplaincy into their hospitals. Often these kinds of cuts happen in health care institutions whose leadership is still narrowly focused on budget cutting rather than pursuing a strategy in which keeping or even expanding non-revenue producing services like palliative care and chaplaincy can wind up saving more money than they cost. Those are also the institutions that are failing at a great rate.

That all said, as I talk to chaplains and hospital administrators, I often see chaplains having some of the same issues which repeatedly put their positions in jeopardy and often cost them their jobs.

A lack of understanding of the evidence or business case for professional chaplaincy so they can sell chaplaincy to their system. Many chaplains simply do not keep up on the literature in the field and many, unfortunately, still don’t understand that selling chaplaincy is essential to the preservation of spiritual care in their institutions.

A lack of appreciation for the necessity of structuring chaplaincy according to what the institution values rather than according to what the chaplains prefer to do or think is best.  I know many chaplaincy jobs that have been cut, not because the institution did not value spiritual care, but because the chaplains essentially refused to provide care that the institution valued. A common example of this mistake is holding on to the “we have to visit everyone” strategy when the hospital wants chaplaincy resources allocated more strategically- including having a dedicated chaplain for palliative care.  A related issue is some chaplain’s unwillingness to participate fully in institutional quality assurance or cost cutting programs that every other department is participating in.

The misunderstanding that completing four units of Clinical Pastoral Education and even being board certified fully qualifies a chaplain to function successfully in today’s health care environment. With a few exceptions, while CPE programs generally train chaplains to function well at the beside, very few train in a number of other areas essential today. Successful chaplaincy today requires the ability to function in an interdisciplinary environment, to communicate well with other disciplines both verbally and in writing, and to make documentable contributions to the carrying out of the institution’s mission and strategic plan.  All of this content and more should be taught in CPE and required in certification and that very does not often happen.

I am very enthusiastic about the future of professional chaplaincy’s role in health care. It is certainly more central and more accepted and understood than at any time during my career. I see more and more chaplaincy colleagues stepping up to practice chaplaincy in the ways our current health care system demands. I look forward to the time soon when the barriers above will be relics of the past and all patients will receive the spiritual care they deserve and need.

 

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.