The NY Times published a very interesting piece on February 17th entitled Doctors Strive to Do Less Harm by Inattentive Care. It got my attention immediately because the first word of the article was “suffering” with a period after it.
As I have become more of a student of communication in general and communication in health care in particular, I have realized the truth of something I heard a long time ago that amounts to “you have to use the right word”. Euphemisms have their uses of course in situations where the most descriptive word can be harsh and even brutal. However, more often, the use of “kinder” words is a cover that allows us as health care providers to pretend we have communicated clearly when we have not and thereby to avoid the painful emotions and even whole topics that we would rather not deal with. Many times in my career as a chaplain I have sat with families who have been told that their loved one “passed away” realizing that the family does not understand that their loved one is dead.
This article points out correctly that we have long avoided in health care discussing suffering or even admitting that it exists. As the article describes, mention of suffering has often been actively discouraged if not prohibited. We much prefer to discuss pain. Pain is an expected part of health care. For many years during my career, it was accepted that pain just came along with certain conditions. Post-surgical pain, for instance, was long just something that you had to live through at least up to the point that it actively interfered with your surgical recovery. In some situations pain is even to be desired. “No pain, no gain” is the mantra in every gym I’ve ever been in. While we have largely moved on to an understanding that this kind of physical pain should just not be tolerated, recent stories in the news have reminded us that many still believe that physical pain at the end of life is often inevitable when it is not.
But suffering is another matter. While we now routinely discuss emotional pain and even, much less often, existential or spiritual pain, discussion of pain still mostly focuses on the physical. However, to discuss suffering as this article points out immediately opens up a whole array of suffering that, since we then know about it, we are obliged to deal with. Many of these sources are, like pain, areas that have long been assumed to be unavoidable in health care. Of course you need to wait, how else can we do it? Of course there is noise in the hospital in the middle of the night, how else can the staff take proper medical care of you? Of course you have to wait for your test results to come back and wait for your provider to call you even though you know that the result may confirm that you have cancer.
So I am thrilled that we finally seem to be reaching the day when these kinds of suffering will not only be acknowledged and spoken about but no longer accepted as an unavoidable consequence of being sick and in a hospital. There is growing appreciation and evidence for the idea that these kinds of suffering, not only affect patient satisfaction scores, but medical outcomes and medical costs as well.
But, as usual, at least one kind of suffering is missing here. That is spiritual or existential suffering (I don’t want to get hung up on the modifier). I think this avoidance arises for much the same reasons that other kinds of suffering have been ignored. We have very little understanding of what “spiritual suffering” looks like or even any sense of how to define it. We have a growing understanding that patients have “spiritual needs” and some growing sense that spiritual suffering as defined by the patient is common, but as yet no real appreciation for how much suffering those needs cause, and even less understanding of how or even if that suffering impacts health outcomes. And finally, even if we do start to describe spiritual suffering, we do not have much idea of how to treat it. Spiritual suffering is rarely assessed and patients generally assume we as health care providers do not want to even hear about it. Any attempts to help patients with spiritual suffering tend to be idiosyncratic to the individual provider and the outcome of even those is rarely documented.
The naming of suffering (using the word) is a great first step. The second may be naming and measuring all the sources of suffering even the ones that we may think are inevitable. The third step is at least working on the premise that no manner of suffering is inevitable and unavoidable. As I mentioned, there was a day in my career that a certain level of physical pain and even a certain level of emotional pain like depression and anxiety when one is sick were thought be unavoidable. We now know better. There are those like Gary Kaplan, CEO at Virginia Mason hospital, who does not accept that making a patient wait for a test is unavoidable.
There are many of us who suspect that spiritual suffering is not only common and has serious impact on quality of life but also can have a big impact on health outcomes and costs. Moreover, we suspect that ameliorating that suffering is not only possible but also straight forward and inexpensive.
So bravo to the authors of this piece in the Times and to those in health care who not only are now willing to acknowledge suffering but find ways to do something about it. It is now up to us who are concerned about spiritual suffering, particularly those of us who are professional chaplains, to keep raising the need to extent this new-found concern to the realm of the spiritual and continue to develop measures to assess for it and help reduce it.