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Feb232014

Palliative Sedation for Existential Suffering?

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

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Reader Comments (3)

George:
Thank you for this most thoughtful essay! One of the challenges seems to be helping the other providers (Nurses, Physicians, Social Workers, etc.) to be sure that a Chaplain is either on the team or brought in early enough so as to impact the outcomes.
In the case of existential suffering; I've found that it is not resolved with one quick session. It usually involves slowly journeying with the patient through re-storying. It is affirming the patient and helping the patient to find resolution in those areas that are clouding over them and their being.
We are all 'patient satisfaction' conscious, and we should be. Perhaps if we looked at providing Pastoral Care as a tool for reducing existential suffering and thus improving 'patient satisfaction,' it would gain more energy. It would seem natural and follows the Press-Ganey findings that religious - spiritual care are critical to 'patient satisfaction.'
Be well,
david

February 24, 2014 | Unregistered CommenterDavid Girardin

I am concerned that 1. an underlying assumption in favor of this sedation is that the person is incapable of working through and integrating his / her existential suffering into his/her experience of living and dying; and 2. this assumption overrides any need the person might have to make peace with his/her family or his/her God. In fact, this sedation process reminds me of old TV movies - the first thing that was done when a woman received news that her husband had died was to give her a sedative!

I'm also concerned this sedation would be prescribed for the comfort of the caregiver or medical team. The following is a recent example: when my niece Helen (17 yo) was hospitalized for cancer last year, one of her doctors came in and saw she was crying (a normal expression of emotion under the circumstances). The doctor took care of her own distress upon seeing a child crying by prescribing a tranquilizer for Helen. My sister and brother in law assumed it was a normal side effect of pain meds for Helen to be sleeping most of the time (therefore, no longer able to get enough food and fluids on her own, and getting so little activity that her muscles wasted away). My sister found out by accident about the added medication when a nurse mentioned the name of the med while she was giving it to Helen. My sister made sure the med was discontinued, and Helen was able to walk, enjoy her favorite foods, and talk with members of her family in person or by phone before she died.

March 6, 2014 | Unregistered CommenterArlene Kohut, OSF

One of my favorite topics right now, George, thank you and well put.

We are very clear that palliative sedation does indeed effectively control pain. Neurological studies and advanced imaging have proven this point conclusively in my opinion. I challenge proponents of existential sedation to provide similar objective evidence before we can assume that sedation does indeed ameliorate existential suffering. Otherwise we cannot ethically counter the concern that we are simply masking the patient's expression.

While most evidence-based psychological interventions require relatively intact cognitive functioning, I will admit my bias that there are levels of spiritual healing that require neither consciousness nor time, though I am certainly at a loss to categorically describe effective interventions for inviting such epiphanies. That said, I believe conscious sedation neither invites nor allows us to witness such serendipities.

I too am concerned with the 'Mission Creep' especially in light of the international momentum in this direction. Your point about exhausting known methods and the need for research is well put, George. If you look back 20-30 years to when we had much less evidence and understanding in pain control, would it have been appropriate then to sedate rather than innovate novel pain control methods? Obviously this is an over-simplification, but I remain concerned that existential sedation will diminish our efforts to establish best practice.

Finally, because it's controversial and fun, there are strong studies coming out of Hopkins on the use of psychotropics for existential anxiety at the end of life. Shouldn't we try psilocybin before midazolam? In all seriousness, there are certainly many avenues left to explore before existential sedation should be considered best practice.

March 11, 2014 | Unregistered CommenterTim Ford

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