VAEH Newsletter #25

August 19, 2004

Hi Folks,

Lest you think the Vermont Alliance for Ethical Healthcare has dissolved in all the rain, just wanted to touch base to keep you up to date on a few happenings.

The Vermont Legislative Council, in response to a request from 78 legislators, solicited information about the Oregon experience with physician-assisted suicide. We were able to compile a binder of about 125 pages, and sent it in along in early June with a suggestion that the Leg Council also look at the experience in the Netherlands. They responded favorably and we sent in another thick binder in mid-July, including info about the Netherlands, Switzerland, Belgium and Australia. Some of the content, though not the actual journal articles themselves, are available on our website: www.vaeh.org.

News items of interest:

In the July issue of the Journal of Palliative Medicine, researchers from the Oregon Health Sciences University published a survey of family reports of pain in patients during their last week of life. It was a repeat of a study done in 1996, the year before PAS was legalized. In 1996, families reported that 30.8% of patients experienced moderate to severe pain, and in 2002 it was up to 48%. This >55% increase in this major quality indicator suggests a significant deterioration of end-of-life care in OR, casting great doubt on the claim by "Death With Dignity" advocates that legalizing PAS increases the quality of EOL care.

The incidence of reported euthanasia in the Netherlands is falling: 2123 cases in 2000; 2054 in 2001; 1882 in 2002; and 1815 in 2003. However, 2 problems must modulate what sounds like good news. First, it has been shown that 60% of cases are not reported, so we really don't know how often it occurs. But second, and very disturbing, is a recent report that the incidence of "terminal sedation" has increased to 10% of all deaths. For those not familiar with the term, terminal sedation is the professionally accepted, but rarely needed, practice of giving a patient enough sedation to render him unconscious if it proves impossible to adequately relieve his symptoms (pain, shortness of breath or agitation). Palliative care specialists in the US say this failure of symptom control may happen in 1-2% of patients in the last hours or days of life. But the Dutch are doing it 5-10 times that often, and are claiming it is an alternative to euthanasia. While it might seem on first read that this is just a trade-off --- less euthanasia, more terminal sedation --- the disturbing part is that TS is often used when patients are too sick to participate in the decision, thus the "euthanasia alternative" is an involuntary practice. One has to worry that Dutch doctors are "stretching the criteria" and doing this as an alternative to good palliative care, and as a way to get around the legal requirement that euthanasia can only be done at the request of a competent patient.

The latest wrinkle in the Vermont "Death With Dignity" campaign is a proposal to the VT Attorney General's Task Force on End-of-Life Decision-Making that the law be changed to allow a competent person to say in their advance directive that they do not want to be given any food or fluids by mouth if they become unable to feed themselves. They argue that this is an extension of the right to refuse a feeding tube. The problem, of course, is that patients with Alzheimer Dementia gradually lose function, so most have a period of many months or a few years during which they are unable to feed themselves, but are fully able to accept food offered to them; and in my experience, patients with dementia are almost always willing or even eager to do so. The DWD folks want family and nursing home caregivers to not offer food or water to these patients if they have declined this in an advance directive. More meetings; more discussion; more acrimony.

As November approaches, be sure to inquire of your legislative candidates what their position is on the legalization of PAS in VT. This is clealy not the only significant issue to Vermonters, but it is one of vital importance to us and our future. Arm yourselves with facts before you have the conversation (check Resources at our website).

The VAEH represents a broad coalition of organizations who favor improved end-of-life care and oppose the legalization of PAS. The Advisory Committee would like to expand the coalition. Anyone out there able to encourage support from other professional groups: pharmacists, physician assistants, nurse practitioners, additional nursing groups, respiratory therapists, paramedics, others? You might be able to do a great service to the effort by making a few phone calls.

Bob Orr, president, VAEH