Hospice Patients Alliance: Consumer Advocacy
This article is reposted here with permission from Nancy Valko, RN and is originally posted at:
www.wf-f.org/02-2-terminalsedation.html at the website
of the Women for Faith and Family organization.
Pentecost 2002 --- Volume XVII No. 2



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 - but just 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 TS "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.

Tellingly, The Pontifical Council's 1994 Charter for Health Care Workers makes an important point when it warns that:

Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient's suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of 'living his own life', by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is 'a truly deplorable practice'.

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.


Sources:
1. Perry Fine, MD, "Total Sedation in End-of-Life Care: Clinical Considerations", Journal of Hospice and Palliative Nursing, Vol. 3, No. 3, July-September 2001
2. Timothy E. Quill, MD and Ira R. Byock, MD for the ACP-ASIM End-of-Life Care Consensus Panel, "Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids", Ann Intern Med. 2000; 132:408-414. Online version available at: http://www.worldrtd.org/quill&Byock.html
3. Charter for Health Care Workers. Pontifical Council for Pastoral Assistance. Vatican translation. 1994. p. 108, Number 124. Available online at:
http://www.ewtn.com/library/CURIA/PCPAHEAL.HTM
4. Tina Maluso-Bolton, MN, RN, "Terminal Agitation", Journal of Hospice and Palliative Nursing, vol.2. Number 1, January/March, 2000.
5. Johnston, Brian, "Deathly Quiet", World Net Daily, 4/13/02, available online at: http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=27217
6. Kingsbury, Robert J., MD, "Palliative Sedation: May We Sleep Before We Die?", Dignity newsletter, Summer, 2001, available online: http://www.cbhd.org/newsletter/012/012kingsbury.htm



"Terminal Sedation" -- Nancy Valko submitted the below quote after the Pentecost Issue had been published.

In a chilling commentary, physician Erich Loewy describes the exact definition of "terminal sedation."


"Terminal sedation essentially places a patient under anesthesia during the dying process. Supportive care is stopped and patients are given a sufficient amount of drugs to render them unconscious. The expression 'terminal sedation' is, I find, peculiar. Terminal sedation is done with the full knowledge that no further active treatment will be done and that patients, as rapidly as possible, will now die as a result of their underlying disease process. The claim is made that such a way of proceeding is aimed at providing maximal relief of pain and suffering -- the death of the patient is 'not intended.' But that is, to say the least, disingenuous. Patients are intentionally kept asleep, their vital functions are deliberately not artificially supported, and they are allowed to die in comfort. That they should die in comfort is clearly the goal -- and I would argue the legitimate goal -- of terminal sedation."


 (Reading: Terminal Sedation, Self-starvation, and Orchestrating the End of Life," Archives of Internal Medicine, 2/12/01, pp. 329-332; available online only with paid subscription) Item courtesy of the American Life League (www.all.org) 


Voices copyright © 2002 Women for Faith & Family. All rights reserved.

May not be copied or reproduced without permission, except that permission is granted to download articles for personal use only. This article is reposted here with permission from Nancy Valko, RN and is from the following website:
www.wf-f.org/02-2-terminalsedation.html at the website of
the Women for Faith and Family organization.
Pentecost 2002 --- Volume XVII No. 2
You may e-mail Nancy Valko, RN at: nv333@mindspring.com






[Note from Hospice Patients Alliance: Terminal sedation as noted above, is becoming more and more common in hospice situations and is used in effect, as a means of slow euthanasia where the family and/or health care professionals are not willing to openly admit they are choosing to end the life of the patient. It is often done routinely without the patient's knowledge or permission, and outwardly appears as a "peaceful death." The term "terminal sedation" as used in this way is not to be confused with the appropriate use of sedation to manage very troublesome symptoms.

Terminal sedation as commonly practiced is without doubt an imposed death, i.e., intentional medical killing. However, complete sedation of a patient is appropriate when the patient is already actively dying and severely agitated, in delirium or when sedation combined with pain medication is being used to manage extreme uncontrolled pain. There may be other situations where a patient may need sedation to remain calm throughout the dying process, and some patients do request sedation. Sedating the patient in these rare circumstances manages the symptom of agitation, delirium or (in combination with pain medications) severe pain but does not cause death as in "terminal sedation" which is a long-term process resulting in death by dehydration, fluid volume deficit and circulatory collapse. - Ron Panzer, President of Hospice Patients Alliance]

Permission is granted to share these articles with others, to print them, or post them on other websites so long as credit
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