In the current issue of the Journal of Pain and Symptom Management, Ten Have and Welie have authored a lengthy but very articulate and thought provoking analysis of the ethical issues involved in palliative sedation especially in relationship to how the current practice of palliative sedation overlaps with or is even occasionally indistinguishable from what might be easily characterized as euthanasia. They point to a lot of evidence for what they define as “mission creep” in the use of palliative sedation as the force moving us in this direction. Since palliative sedation is increasingly common in the US, this article is a must read for everyone involved in end-of-life care.
One of the authors’ central points is that the published or assumed definitions of palliative sedation vary widely which is part of the problem. However, as a point of reference for those who may not be clear about what palliative sedation is, the authors quote the following which is pretty consistent with my understanding of the generally held definition.
The NHPCO describes palliative sedation as "the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable." The scope of the NHPCO statement is limited to patients who are imminently dying
From the point of view of the spiritual care provider, this article raises a lot of issues of which I would like to focus one- simply characterized as the use of palliative sedation to treat existential suffering. Palliative sedation was originally used pretty exclusively to treat intractable and intolerable physical pain at the end of life. Part of the mission creep to which Ten Have and Welie refer is the tendency now to use it for pain in any domain- physical, social emotional or spiritual/existential. It is important to state immediately that many palliative care practitioners, including myself have argued that pain and suffering should be treated as symptoms of equal importance no matter from which domain they arise. This inclusiveness would lead to the logical conclusion that refractory and intolerable existential suffering could and should be treated with palliative sedation.
However, I would suggest that some of the criteria used to evaluate the appropriateness of palliative sedation, while suitable for dealing with physical suffering, may not fit as well when the suffering is existential.
One of these criteria is that the symptom must be intractable (i.e. refractory) to all other treatments for this condition. That is, palliative sedation is a treatment of last resort. Put another way, for any patient to qualify for palliative sedation because of existential suffering, it needs to be demonstrated that they have had all possible treatments for existential suffering. One of those treatments would seem to be assessment and treatment by a professional chaplain with the appropriate skills. The problem is that in many settings, that “treatment” option is not available. So does that mean the patient gets to go directly to palliative sedation? I would think that, at the very least, the treatment team should be required to document that every attempt has been made to provide this treatment. And teams that anticipate using palliative sedation to treat existential suffering would seem to be obliged proactively to establish access to a professional chaplain. Even if the chaplain is available, how long a “trial” of treatment is appropriate before it can be concluded that the treatment has failed? There are no algorithms in spiritual care that would guide a team in this evaluation. Research is clearly needed here. Finally, what about drug treatment in this situation? Are medications used to treat physical pain also the options for treatment of existential suffering? Would drugs used to treat emotional distress or suffering be more appropriate?
Another criteria involved in palliative sedation is that the sedation needs to be proportional to the suffering. That is, the treatment needs to be titrated to the point at which the pain and suffering is no longer “intolerable”. In the case of physical pain, the goal is not necessarily to eliminate all of the patient’s pain or to put them in an unconscious state. The goal is to make their condition tolerable. Again, in physical pain there is the well known and tested 1-10 scale for pain severity. But what about existential suffering? Certainly one could use the same scale. And again what about drugs? It is not clear to me that using drugs designed to relieve physical pain, even if they are successful in that process, will have any impact on true existential distress.
If one believes as I do that elimination of suffering especially in the context of advanced illness and at end of life is a central goal of health care, then there are clearly cases in which palliative sedation is the treatment of choice. That conclusion is likely true no matter what the source of the suffering. However, I am concerned that, since the “treatment” for existential/spiritual suffering is severely under developed and often not even available, the “mission creep” leading to palliative sedation will be more severe that even for physical pain. It behooves us who are charged with developing spiritual care to take this challenge seriously and fill this gap so that patients experiencing intolerable spiritual suffering at the end of life will have another option besides being drugged into unconsciousness.
Ten Have, H., & Welie, J, Palliative Sedation Versus Euthanasia: An Ethical Assessment. J. of Pain & Symptom Management. 47(1), 123-136