Sedated to Death? When “comfort care” becomes dangerous

Sedated to Death?

When “comfort care” becomes dangerous

by Nancy Guilfoy Valko, RN

As I write this in May 2002, the Hawaiian legislature just defeated a bill to legalize assisted suicide by only 3 votes. Few people were aware of how close Hawaii came to joining Oregon as the second US state to allow doctors to help kill their patients. But before anyone breathes a sigh of relief, it is important to understand that a quieter - butjust as lethal - advance in the euthanasia agenda is gaining ground throughout the US.

In the past few years, some ethicists and doctors have proposed “terminal sedation” (TS) as a legal alternative to assisted suicide. TS is defined as the deliberate “termination of awareness” for “relief of intractable pain when specific pain relieving protocols or interventions are ineffective” and/or “relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion)”. (Emphasis added) An essential component of TS is also the withdrawal of all treatment, including even food and water, so that death occurs as soon as possible.

The issue is not really “intractable pain”, which those of us who have worked in hospice or with other dying patients know can virtually always be controlled. In Oregon, voters were sold their assisted suicide law by claims that terminally ill people needed lethal overdoses to relieve unbearable pain - yet even the limited data on assisted suicide victims there shows that the main reasons given by the victims were fear of future suffering, losing independence and/or being a “burden” on family members rather than current or unbearable pain.

While some euthanasia supporters have called IS “inhumane” compared with a faster death by a lethal overdose, other supporters view TS as a way of getting around the “problem” of the euthanasia movement’s inability — so far — to convince voters or state legislatures to enact Oregon-style assisted suicide laws.

Increasingly, TS is being incorporated into some hospice and other “end of life” programs, even though, as writer Brian Johnston points out, euthanasia supporters like Doctor David Orentlicher are admitting in prestigious medical journals that “terminal sedation is tantamount to euthanasia, or a kind of slow euthanasia”.

Unfortunately, even some doctors who condemn assisted suicide have embraced TS as an ethical “choice”. Doctor Ira Byock, a public opponent of assisted suicide, recently joined with Doctor Timothy Quill, an even more public supporter of assisted suicide, in writing an article supporting TS. As an example of the ethical use of TS, they used the case of a radiology doctor with a lethal brain tumor who wanted to die as soon as possible, not because he was in pain but because he was losing his ability to function independently. The radiologist decided to stop all his medications (as well as eating and drinking) but insisted that his doctor make the process bearable. This demand resulted in the use of TS to alleviate his confusion and agitation, which resulted after nine days without food and water.

Similarly, Dr. Robert Kingsbury, the director of SSM (Sisters of Saint Mary) Catholic hospice in Saint Louis, wrote an article supporting the option of TS as comforting and “critical for patients who are profoundly fearful” of terrible suffering at the end of life. Although the traditional and trusted hospice philosophy has been to care for the dying without either prolonging or hastening death, Doctor Kingsbury rejects the notion that TS and withdrawal of food and water causes or hastens death.

Non-voluntary Terminal Sedation

Although TS is usually presented as an ethical “choice” rationally made by people who are dying, TS is not uncommon even for people who are incompetent to make their own decisions or who are not close to death.

Dr. Perry Fine provided the rationale for this use of TS by citing “living wills” and other advance directives, as well as decisions made by families or others. Virtually every “living will” or other advance directive specifically requests medication if needed for pain even if there is a risk of hastening death. While no one would disagree with this in principle. the reality is that such language can provide a loophole for doctors or families who see death as something to get over with as soon as possible. Families often agree to “comfort care only” for relatives with brain injuries or dementia without realizing that this can also involve TS.

For example, a few years ago I received a phone call from a niece who was worried about her elderly aunt who had suffered a severe stroke several days before. The aunt had signed a protective document designed by a pro-life group as an alternative to the dangerous “living will”. The document specifically said that, unless death was inevitable and imminent, ordinary treatments such as food, water and basic medical care were to be provided. The document also named the aunt’s sister as the person to make medical decisions if the aunt became incapacitated.

The problem was that although the doctor had declared the aunt’s stroke a “terminal event” (a questionable prognosis at best), she was still alive and breathing, although unconscious. Understandably, the niece began to now question whether her aunt was indeed terminal and whether she should be receiving food, water and basic medical care as her protective document directed.

One of the first questions I asked was whether the aunt was on morphine. (Although strokes rarely cause pain beyond a sometimes initial headache, many doctors and nurses consider unconsciousness a sign that the patient will be severely disabled even if he or she lives, and thus deem such a patient “hopeless”.) The niece said that the doctor had ordered the morphine as part of the “comfort care” to prevent any discomfort as the aunt died. I suggested that the niece talk to the doctor and her aunt’s sister about stopping or reducing the morphine to see if this was responsible for the aunt’s apparent coma. Sure enough, when the morphine was stopped. the aunt began to respond and, according to the niece, even seemed to recognize relatives.

However, the aunt’s sister insisted that a priest told her such apparent reactions were “just reflexes” and told the doctor to resume the morphine. The other relatives briefly considered talking to a lawyer about enforcing the aunt’s protective document but were reluctant to cause further division in the family. Not surprisingly, the aunt died after two weeks without food and water.

Such scenarios are unfortunately becoming more and more frequent. Terminal sedation is not a rarely used last resort, as its supporters maintain. Even the few studies on TS report the prevalence of terminal sedation to range from 3% to 52% in the terminally ill. When the unknown actual incidence of terminating awareness-or insuring unawareness-in patients with stroke, dementia or other serious illnesses is factored in, the use of TS as a form of “comfort care” may well be approaching epidemic proportions, even outside the hospice area.

As a former hospice nurse and now as an ICU nurse caring for some patients who turn out to be dying, I support the appropriate use of pain and sedating medications as ethical comfort care. However, even in circumstances where such medications are necessary, I have never seen a case where a patient “needed” to be made permanently unconscious.

In addition, the newer health care system problems of cost-containment and stressed, overburdened caregivers can make TS even more attractive - and dangerous - to patients, families and medical professionals alike.

The euthanasia movement is nothing if not creative and persistent. Many people now mistakenly believe that tolerating just a little bit of deliberate death - with safeguards, of course - will give them control at the end of their own lives. But as the “culture of death” keeps seducing even well-meaning patients, families and medical professionals into making death decisions based on fear of suffering or diminished quality of life rather than following the traditional principles of not causing or hastening death, ultimately we are all at risk of being “compassionately” rationalized to death.

Saint Charbel for Life
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