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Friday
Apr152016

Hearing the Voice of the Patient

Much is made these days of hearing and including the "voice of the patient" in the conduct of health care. To be clear, on the whole I think this is a great move and long overdue. It has been long missing from health care in some very basic ways. For a long time, we thought that the doctor's determination of what degree of physical pain the patient was in should be the driver of decisions about medication as opposed to what the patient reported to be their pain level. Then we found out that the medical professional's perception was wildly inaccurate most of the time and the patient's self-report was generally spot on.

So, these days, it is almost scandalous to suggest that patients and their family caregivers should not be consulted and included in deciding on their care. Many of us are advocating models in which the patient actually sits in on the team's care planning rather than the team having discussions without the patient and then bringing the patient into the conversation to "discuss" the plan the team has already decided on.

However, as with most conditions in life, this one comes with some consequences that many didn't anticipate and some providers don't necessarily like. For example, many providers who have supported patient involvement and starting the planning with patient and family values generally are in favor of less aggressive care when the medical judgment is that the treatment is most likely to not extend life and/or to lower quality of life. However, what about the patient or family who wants "everything done" even in the face of the unanimous medical judgment that aggressive care is futile? If we are true to the idea of listening to the voice of the patient, we are obliged to provide aggressive care at least within the bounds of normal professional ethics. This is uncomfortable for many providers who are then tempted to resist the patient's expressed wishes.

And what about the patient and family who is not "like us"? The vast majority of health care providers are educated, highly health literate, and have some degree of financial and social resources. While I'm fully supportive of any and all attempts to promote health literacy, I wince when I hear otherwise compassionate providers discount a particular patient's input because "they don't understand" which is code for lack of health literacy. And what about the patient whose beliefs conflict with recommended treatment? I have never heard of a chaplain being called to intervene with a patient whose beliefs supported the treatment decision the team was recommending but we are often called to "help" a patient or family whose religious beliefs are in conflict with what the treatment the team is recommending.

Now granted, there are limits to the treatment patients and especially surrogates ought to be allowed to demand or refuse. Dr. Harvey Chochinov has recently written about what he argues to be the lack of protection for children and the mentally ill in the currently debated Canadian physician assisted death law. I am clear that patients should not be allowed to make decisions that put others at risk- from infectious diseases for instance.

However, those conditions need to be viewed as carefully considered exceptions to the general rule. Otherwise, the idea that the voice of the patient is always included needs to be followed by "except when the providers find it inconvenient or offensive or against their own beliefs". No right is absolute but they are called "rights" because they are granted except in very well defined circumstance.

I think it can be argued that listening to our patients and understanding how they want their care conducted is the most important thing we as health care providers do. We need to be extremely vigilance to recognize and call out any discounting of that voice.

 

 

 

 

Friday
Feb192016

What Does Quality in Spiritual Care Look Like? 

"Quality" is a term like "motherhood" and "apple pie". Who could be against it?  Who of us wants to buy, own or be a part of anything that doesn't have quality? Who of us as spiritual care providers strives to provide care that lacks quality? Hopefully, none of us.

Thankfully (I think) health care in many parts of the world is becoming more and more concerned with what constitutes quality and is starting to align payments for health care with demonstrations of quality. Increasingly, all services are being judged (and funded) by the value of what they add to the system with value defined as Quality/Cost. In the US, the major quality goals are known as the 'triple aims"- improved medical outcomes, reduced cost and patient satisfaction.

But, as they say, "the devil is in the details".  That is, we are very quick to agree on the idea that "quality" is a value to be supported and sought after, but we are often very slow to agree on what quality actually looks like and how to measure it. This is OK when we are buying a car and it is an individual preference about what constitutes quality for us. It is quite another when the quality indicators are going to drive everything from program decisions, to training of practitioners, to who gets paid for what.

This inability to agree on outcomes has been especially problematic in spiritual care where the normal medical metrics of cure rates and readmissions seemingly do not apply. Further, the normal bar for proposing a quality measure or indicator is that it is "evidence-based". That is, there is research or guidelines or regulation behind it. This evidence has been lacking for any indicator that would support spiritual care.

Thankfully, that situation has now changed. Recently, it was my great honor to facilitate an exceptional international, multidisciplinary panel assembled by the  HealthCare Chaplaincy Network to develop the first comprehensive set of evidence-based quality indicators for spiritual care along with suggested metrics and measures. That set of Indicators is now complete. I am convinced that this is a much-needed and huge step forward.

To be clear, this set of quality indicators is not the end of this development process. It is only the beginning. It represents the indicators that we have evidence for now. As an example, there is no indicator in the area of staff ministry- not because we think its not important- but because there is not evidence to supports its inclusion. Further, as we develop better measures and test these indicators against health outcomes, we will continue to refine and target them so their ability to drive sought after outcomes in health care in general improves.

A highlight for me is the inclusion, for the first time, of a proposed set of outcomes that will allow organizations to actually measure and document the value that chaplains bring to patient care. They will also raise the bar for professional chaplains to be accountable for these kinds of contributions and to focus their training and certification processes on preparing chaplains to deliver these outcomes. But, finally, they will start to focus spiritual care on discovering, assessing, and intervening to improve spiritual issues that are increasingly being shown to affect people's health and well-being.

 The link to the Indicators, the list of the panel members and a short guide for its use can be found at.

 http://www.healthcarechaplaincy.org./research.html

Wednesday
Feb032016

Religious vs. Spiritual: Is This Really an Issue?

While I appreciate a good discussion of ideas as much as anyone, when it comes to professional practice, and in chaplaincy's case, clinical practice, I pretty quickly default to the "so what" question. That is, does this question and any answer we come to really impact the care we are providing? If not, I tend to view it as a distraction to good care. It clutters my mind and makes it more difficult for me to focus on the clinical issues that are important to determining the spiritual care this patient should receive.

One of the questions I have never understood the clinical relevance of is whether a given patient is "spiritual" or "religious" or "secular" or whatever or whether the care we are providing is "spiritual" or "religious".  To be clear, deciding whether a particular chaplain provides spiritual care or religious care or both is another question. Some chaplains are only trained to provide care to patients of their own faith tradition or are paid by their faith tradition to provide only that care. It may also be important to the patient how they label themselves. However, in the context of multi-faith professional health care chaplaincy providing care that is patient-centered, I would submit that approaching a patient with the idea that the care we provide is somehow of a different kind because the patient is spiritual or religious or that the care we can provide is colored by this distinction does not contribute to a good clinical outcome and may even impede it.

I have great respect and appreciation for the writing of Chaplain Steve Nolan from the UK. He and George Fitchett have taken on one of the great needs of our profession- to provide a body of published case studies.  However, unfortunately, I believe Chaplain Nolan's latest published case, “He Needs to Talk!”: A Chaplain’s Case Study of Nonreligious Spiritual Care" published in the current issue of the J of Health Care Chaplaincy, suffers from getting hooked on this issue of whether the care is religious, spiritual or secular and, if non-religious, whether chaplains have a 'unique contribution" to make. 

To start, I am not at all clear what "nonreligious spiritual care" is and Chaplain Nolan does not define those terms for us. The introduction is an interesting summary focusing on the distinctions between spiritual and religious. All of this left me to read the case with an unhelpful lens and to almost miss the salient point which Chaplain Nolan makes on the bottom of page 2.

        However, all the work reported is pastoral care of the kind delivered by a religious pastor, and I would argue that, because it attends to that “natural extension of the conscious self” that some regard as “transcendent” (Elkins, Hedstrom, Hughes, Leaf, & Saunders, 1988, p. 10), it is spiritual care of the kind best delivered by a chaplain (Nolan, 2011).

For me, this is the point of the case -"this is spiritual care of a kind best delivered by a chaplains". Whether it is religious or spiritual or non-religious spiritual is not the point. Yes, it is care of a patient who might have claimed not to be religious although we don't even know that for sure. But, the point is that Chaplain Nolan sees this patient and family for who they are and uses his broad range of skills to provide spiritual care appropriate to their situation. Whether that care is religious or non-religious is an unhelpful distraction.

Betty Ferrell has suggested that there are some questions in the integration of spiritual care that we should not discuss any more because they have been decided and continuing to discuss them simply holds us back. If spiritual care should be integrated into health care is one of them. I would suggest that the question of whether a chaplain can make an important contribution to the care of someone who is not religious is another.  Yes, we need many more cases like this to help us grow in how this care might best be provided and Denise Hess's commentary is very helpful in that regard. 

Thanks to Chaplain Nolan for his continuing willingness to put his work out there and advance our profession.

Elkins, D. N., Hedstrom, L. J., Hughes, L. L., Leaf, J. A., & Saunders, C. L. (1988). Toward a humanistic-phenomenological spirituality: Definition, description and measurement. Journal of Humanistic Psychology, 28(4), 5–18. doi:10.1177/

Ferrell, B.  Integration of Spirituality in Palliative Care Education and Research.  2015 Caring for the Spirit Conference.  HealthCare Chaplaincy Network., Orlando, Fl. April, 2014.

 Nolan, S. (2011). Psychospiritual care: New content for old concepts – Towards a new paradigm for non-religious spiritu


 

 

Tuesday
Dec292015

New Year's Resolution- Being Able to Support What We Claim

I have never been much for New Year's resolutions. My take for myself at least has always been that I should make changes in my life when I decide I need to make them and when I'm so motivated, not because it is the new year. However, as I am taking some relative down time caused mainly by everyone I work with being on vacation and thinking about the projects I have coming up, one resolution does occur to me that I believe will help me and help advance professional chaplaincy.

My resolution was stimulated by a review article by Blinderman and Billings in the December 24th NEJM in which they make the point that the term, "comfort care", is sometimes used in a "misleading or imprecise manner". One example is when it seems to mean only that the patient has a DNR order while missing all the other implications and opportunities that true comfort care implies. This all too common issue reminds me how easy it is to misuse some very popular terms of the day so that we appear to make claims beyond what the claimant can really support or what is really true. Thus "comfort care" without attention to all the patient's symptoms is not comfort care.  Likewise, Betty Ferrell has reminded us that palliative care without attention to all eight domains of the NCP Guidelines is not palliative care.

My particular concern, both for myself and others, is that, in the current health care environment, many stakeholders assume that any claims one makes for one's profession are backed up by evidence and that evidence can be produced if asked for.  In other words, any claim is more and more often assumed to be "evidence-based" whether that modifier is used or not. Put another way, to make a claim for what we do or how effectively we do it without being able to provide evidence does not live up to the current standard for making these kinds of claims. Most importantly, it is the evidence-based claims that will advance our profession and the non-evidence claims that will mark us as a profession which cannot or even refuses to document how it contributes.

A pause to be clear what I mean by evidence.  It can be in the form of a quantitative research study, which is the form most people think about. However, the common categories of evidence in lists such as the one we used in our work for the US Navy also allows qualitative studies, case studies, consensus panels and even a category called "expert opinion".[i]  The latter are considered lower levels of evidence and should be identified as such but they do count as evidence.

The pitfalls for chaplaincy in this regard are many.  The late CPE Supervisor, Art Lucas, challenged his students years ago to provide concrete evidence for any outcomes they claimed for a patient visit rather than simply presenting assumptions or belief.[ii] I still hear and read claims for the efficacy of chaplaincy such as that we reduce law suits for which there is not a bit of evidence of any kind.

One temptation that I find myself succumbing to from time to time is to confuse what I believe to be true with what I know to be true. For instance, while I firmly believe that chaplaincy services properly targeted and integrated are cost savings to an institution and that some day the research will demonstrate that, there is no evidence yet to support that belief. To be clear, there is no problem with me making this claim as long as I am clear that this is only my opinion and not supported by any other evidence.

Along this same line, it is all too easy in the present environment to make the blanket claim that chaplaincy is "value added" or even that our training or certifications are demonstrably value-added. We as professional chaplains believe this of course (we worked too hard to be trained and certified not to) but the truth is that there is no evidence to support the contention that CPE or the BCC process reliably makes us "better" chaplains or adds value to the health care enterprise. The fact is we can't really even describe yet what "better" means in the context of health care.

So finally to the resolution.  I pledge that in my writing and speaking I will strive to support every claim I make with evidence including the level of evidence and to provide the specific citations for that evidence whenever the situation allows so that anyone who desires can verify my claim. If I make a claim that is only my opinion, I will strive to make that clear. These claims include claims for the value added of spiritual care and chaplaincy care, claims for what chaplains should be doing and producing, and claims for the efficacy of chaplaincy education and the competence of chaplains. I challenge my colleagues to strive to meet this same standard and I reserve the right to challenge anyone in the profession who makes claims that are not evidence-based. 

As a rabbi friend of mine likes to say, Happy Gregorian New Year!

 


[i] Hughes B, Handzo G. 2010. The Handbook on Best Practices for the Provision of Spiritual Care to Persons with Post Traumatic Stress Disorder and Traumatic Brain Injury. United States Department of the Navy, Bureau of Medicine and Surgery.

 

[ii] VandeCreek, L, Lucas, A. 2001.  The Discipline for Pastoral Care Giving: Foundations for Outcome Oriented Chaplaincy, J. of Health Care Chaplaincy, 10(2) and 11. 

Friday
Dec112015

Where Will This End?

I recently saw a play called "The Christians" by Lucas Hnath. While it does take place in a Protestant church and all the characters are Christians, the issues raised are universal and apply, not only to people of any faith, but to people of any kind of belief at all. Since everyone should see this play, I do not want to give away the plot. However, one of the important issues the play raised for me is how widespread and sometimes subtle intolerance can be.

In religious circles, many think of intolerance as a defining characteristic of conservative religiosity. Scriptural literalists and "fundamentalists". But what about the widespread intolerance of scriptural literalists by many "liberal" segments of our society? Is that intolerance and distain any less damaging to the fabric of our communities?  

Coming of age in the 1960s, I wanted at least to believe that our intolerance and our unwillingness to accept others as equals was declining if not coming to an end. The movements for "civil rights", "women’s rights", and "gay rights" all seemed to promise that we were growing more tolerate and mutually accepting as a society. However, many years later it is not safe to be black in the US. It is not safe to dress or act in a way that might lead others to suspect you are gay.  And now, it is clearly not safe to dress or act in a way that would lead others to suspect you are Muslim. It is definitely not safe to be in a Muslim house of worship.

Worse, it seems that many in our society of all backgrounds are of the belief that the way to defend ourselves against those who we refuse to tolerate or we perceive to not tolerate us is to shoot them thus creating a society which is not safe for any of us.

Clearly, finding ways out of this situation is everyone's responsibility. Yet, it seems to me that we as chaplains have a special responsibility. Values such as mutual respect and treating everyone with dignity have been cornerstones of our profession. We are supposedly experts in helping people listen to each other and hear each other rather than becoming adversarial. One of our professional mantras is "accepting people where they are" and we have never put any caveats on that statement.  Maybe even more importantly right now is that we are trained to recognize intolerance and disrespect when we see it and hear it and have the skills to bring attention to it in a way that can produce true listening and community.

At this point, these values and skills can be of a huge benefit to our whole society.  However, we need to be assertive and risk taking in calling attention to ideas and speech that separates us when we see it and hear it.  We need to be more aggressive in demonstrating good listening and acceptance in all of our encounters and modeling the behaviors we know will build community rather than tear it apart.  

None of this of course will reduce the prejudice and narrow-mindedness in our society over night. But it will help.