“Clarifying” life-sustaining care in NH: don’t take water for granted

With little fanfare, a bill making a significant change in the definition of life-sustaining care is now under consideration in Concord. I attended the hearing to find out what was behind the legislation. As has been the case time & again on the end-of-life bills I’ve monitored through the past couple of decades, the most interesting remarks didn’t come from the sponsor. Also, once again, I heard medical and social-service professionals blur the distinctions among terminal illness, “permanent unconsciousness,” and non-terminal physical disability.

Calling New Hampshire’s advance directive law “cumbersome,” Sen. Peggy Gilmour (D-Hollis) introduced SB 170 to her New Hampshire Senate colleagues on the Health, Education, and Human Services committee earlier this week, with support from four co-sponsors. According to the bill’s formal analysis, it “clarifies the definition of life-sustaining treatment to include nutrition and hydration for purposes of an advance directive.” Gilmour, a nurse, said “Our [the legislature’s] job is to make this a process that promotes advance planning. This bill clears up confusion.”

Under the current state law regarding living wills and durable powers of attorney for health care, “medically administered” food and water are treated separately from all other forms of medical care and life-sustaining treatment,  Food and water have been considered, well, normal. SB 170 would change that, rolling food & water into the same category as dialysis and mechanical respiration.

Testifying in favor of SB 170 were a physician, an Episcopal priest, and the executive directors of the Foundation for Healthy Communities, the NH Hospice & Palliative Care Organization, and the NH Council on Developmental Disabilities. All had the same message: SB 170 would simplify, clarify, and reduce confusion over the existing law. No one testified as an individual patient or patient’s family member.

Rep. Lenette Peterson (R-Merrimack) was not won over. She called SB 170 “bait and switch to the people of New Hampshire, who think of food and water as ordinary treatment. Will insurance companies refuse to cover nutrition and hydration [as part of end-of-life care] if it’s considered ‘life-sustaining’ treatment?” She added that the bill is a danger to people with disabilities who rely on so-called artificial feeding, even though they are not terminally ill.

Not so, said Sen. Gilmour. People with disabilities who are not terminally ill “should not be affected by this. [Their] choices are not being taken away.”  So far, so good. But then the Episcopal priest gave the game away, in a manner of speaking. This Canon, an obviously-compassionate man of over 40 years experience in pastoral ministry, said of end-of-life planning that people “don’t really understand the complexity of this issue” and “they mention Terri Schiavo.”

The good priest was present to endorse SB 170 and its “clarification.” Would that really help people understand the complexity of the issue? Do he and his parishioners who mention Terri Schiavo understand that while she had brain damage, she was not terminally ill, but instead died of starvation and dehydration nearly two weeks after being deprived of food and water? For a review of Schiavo’s long illness and eventual court-imposed death, see here.

And then there was the testimony of Carol Stamatakis of the NH Council on Developmental Disabilities. She dismissed Rep. Peterson’s concern about how people consider food and water to be ordinary care. “From a legal and constitutional perspective, food and water is medical treatment.” She did acknowledge that “for some people, this is a religious distinction,” and she was sure that such religious beliefs were accommodated under SB 170.

I suppose I should be relieved to have my religious beliefs accommodated in Concord. But think about what I heard. It’s OK for me to think that nutrition and hydration are ordinary and even palliative, as long as I understand that the medical professionals know better. Hmmm.

Also, what’s the result of the “confusion” mentioned by the bill’s supporters? Is it just that not enough advance directives are being signed? Perhaps people aren’t signing because they don’t want such a document. Some of SB 170’s supporters speculated that this is all because people are in denial about death. I caught a whiff of the-pros-know-best, which is a far cry from respecting a patient’s wishes.

Shortly after the hearing, I forwarded my notes to some friends and colleagues familiar with the end-of-life landscape from personal, medical, and political angles. Response was quick and unanimous: this bill means trouble for people with disabilities who can’t speak for themselves. I was given access to a message that has since been sent to the committee by Diane Coleman of Not Dead Yet, a national grassroots disability rights group. Coleman gave four reasons for keeping nutrition and hydration separate under law from other life-sustaining treatments.

  • Many non-terminal conditions related to swallowing prevent safe oral ingestion of food and fluids.
  • People who need tube feeding on a long-term basis, for example people with brain injury or a developmental disability, are disabled under law, and protection of this group is subject to a variety of laws to prevent discrimination.
  • Many people with an uncertain prognosis may depend on tube feeding and intravenous fluids temporarily, but then recover. Cutting off fluids at that stage of uncertainty creates a self-fulfilling prophecy of death.
  • Many people in assisted-living situations need assistance to eat orally, but may be insufficient staff to handle the feedings. In some settings, tube feeding is used for that reason alone.

Coleman concluded that life support has become “an increasingly pejorative term,” and said that sweeping food and fluids into that category actually undermines informed consent. She does not support SB 170.

Sen. Gilmour’s bill, if it respects religious beliefs as Ms. Stamatakis says, will let me specify that I do not wish to be dehydrated to death.  It is profoundly troubling to me that I’d have to put that in writing in order for an end-of-life “health care” provider to know what to do.

As of today, no date has been set for a committee vote. Action by the full Senate will come by the end of March.