Feeding tubes & ordinary people

Our New Hampshire legislators passed a law last year that designates food and water as medical care, not ordinary care, for the purposes of advance directives and life-sustaining treatment. Done deal. I hereby refer all complaints to the members of the House and Senate committees that handle health and human services.

This came to mind when something interesting crossed my news feed today. Definitely to be shared, for all of us who think it matters whether we’re entitled to be nurtured when we’re medically vulnerable.

Did you know that this is Feeding Tube Awareness Week? I had no idea, until Cathy Ludlum brought it to my attention via her wonderful post Better Dead Than Fed? Not! (via the Not Dead Yet blog). This is no mere academic discussion for Cathy, who uses a feeding tube herself, and thereby benefits greatly.

In Cathy’s words, “No one is saying that feeding tubes are appropriate for everyone.  Every person and situation is different.  But for many, a feeding tube makes life possible, and that is worth celebrating this week.”

http://www.notdeadyet.org/2014/02/guest-blog-by-cathy-ludlum-better-dead-than-fed-not.html

NH assisted suicide bill, round 1

For hours yesterday, people spoke up against assisted suicide in New Hampshire, essentially saying “hell, no.” The count was impressive. The only decisive count will come from legislators, though, and the outcome is very much in doubt. Here’s this morning’s Facebook post by a committee member, referring not only to HB 1325 but to a second bill, HB 1226, to set up a committee to study end-of-life decisions

“NH Voters: If you are concerned with end of life decisions and you are against Assisted Suicide, please send e-mails to the House Judiciary Committee, flood our in boxes. We had two public hearings yesterday on the subject and some committee members are actually planning on voting for this to pass. NO ONE spoke in favor of these two horrific bills, but plenty of people spoke out against it. Unfortunately, some of the speakers were from out of town and most e-mails have come from out of town. Their thinking is that since no one is speaking out in NH, it must not be something people are concerned about, so let’s pass it…… The link is HouseJudiciaryCommittee@leg.state.nh.us. Thank you!”

The setting for the hearing

Too much was going on at once yesterday. Two hearings, only a few yards apart in Concord’s Legislative Office Building, and I had to choose. I went with door #2. Over an hour later, first round of business done, I hurried to where the House Judiciary Committee was having its hearing on HB 1325.  I hoped I wasn’t too late.

I could barely get in the door.

There was the committee, seated around its big U-shaped table taking up two-thirds of the room, with no one aside from House staff permitted to stand along the walls. This is the standard set-up for New Hampshire House committees. In the remaining third of the room, the two rows of seats were full, with more people standing in clusters at each end of the rows. When I managed to squeeze into the room, I became the de facto doorkeeper as people entered and left.

I was so wedged in that I couldn’t reach my phone or use my tablet, so the world had to get along without my livetweeting (and at last report the world was getting along fine without it). Just as well, since I’d been using the hashtag #hb1325, which someone later pointed out to me was the same hashtag used for a bill in Colorado on a different subject. In the future I’ll use #noPASnh (with PAS standing for physician-assisted suicide).

Some of the testimony

I had earlier provided the committee clerk with the testimony I had prepared on behalf of the New Hampshire nonprofit organization for which I work. The committee members will see this, even though I didn’t testify in person. The core of the testimony is here:

Nothing is more certain to inhibit support for palliative- and supportive-care strategies than to make physician-prescribed death a treatment option. Pain management, respite care, and adaptive technology can require complex, time-consuming effort. Taking a handful of pills is cheap. The negative message to vulnerable, depressed individuals would be unmistakable.

I recognized friendly faces in the crowd, including legislators who have worked for years to resist assisted-suicide legislation. I also saw many people I didn’t know, and I could only hope they were there to protest the bill. I later heard from a committee member that they were indeed opponents – and articulate ones, too. Two of them posted their testimony online via links on PRWeb. They’re worth quoting, but I heartily recommend you go to the PRWeb link to read the statements in full.

From John Kelly, on behalf of Not Dead Yet and Massachusetts Second Thoughts:

We were the progressive voice in Massachusetts that defeated the assisted suicide ballot question.  Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not….We chose our name Second Thoughts because we find that many people, once they delve below the surface appeal of assisted suicide, have “second thoughts” and oppose it.  In Massachusetts a month before the election, 68% of Massachusetts voters supported the ballot question.  But upon closer look at the real-world threats the legislation posed, voters had serious “second thoughts.”  …

There is nothing in this or any other assisted suicide bill that can protect people who are being abused.  Every year in New Hampshire, it is estimated that there are over 26,000 reported and unreported cases of elder abuse.  No independent, disinterested witness is required when the lethal dosage is taken, which means that the stipulation that someone “must” self-administer the drug is merely a recommendation.  These bills take no notice of how self-interest can motivate family members and caregivers.  Because of the typical provision in these laws that death certificates list the cause of death as the underlying illness, investigations are foreclosed….

HB 1325 uses a definition of “terminal condition” that directly threatens the lives of me and many of my disabled friends.  Section 13 reads:“Terminal condition” means an incurable and irreversible condition, for the end stage for which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

The day this bill goes into effect, thousands of people will be instantly made eligible.  For example, my quadriplegia constitutes “an incurable and irreversible condition.”  It has “no known treatment,” and likely “will result in premature death.”  This bill would authorize a New Hampshire doctor, whom I saw “regularly,” to validate temporary feelings of being a burden as being worse than death.  Legalizing assisted suicide sends the wrong message to anyone who depends on caregivers, the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide the lethal means to end your life.  We are not better off dead.

From Stephen Mendelsohn of Second Thoughts Connecticut:

This bill, with its expansive eligibility targeting a wide range of people with long-term disabilities who are nowhere near death, morphs New Hampshire’s honored state motto, “Live Free or Die” into an ableist obscenity: “Live Nondisabled or Die.”… 

Let us remember that people in Oregon and Washington [where assisted suicide is legal] are killing themselves not because of pain, but because of fear of disability, because they view needing assistance with eating or toileting as a “loss of autonomy,” a “loss of dignity,” and a “burden” on others [according to Oregon’s 2012 report on the Death with Dignity Act]….

As Oregon’s experience shows, death is always the cheapest “treatment.”  Barbara Wagner and Randy Stroup found that out when Oregon Medicaid refused to pay for chemotherapy, but offered to pay for lethal drugs so they could commit suicide under that state’s “Death With Dignity Act.”…

And what message does this legislation send toward those contemplating suicide?  We constantly hear the six-word slogan from proponents, “My Life. My Death. My Choice.”  If “my death” is “my choice,” what message are we sending to an autistic or LGBT teenager who is being mercilessly bullied?  After all, victims of bullying also experience “severe, unrelenting suffering.”  Why even have suicide prevention? … Let us reject HB 1325 and instead work to build a world where no one feels they ought to die merely because they cannot do everything for themselves and instead receive blessing from others, whether they may have days, months, or many years of life ahead.

When I arrived at the hearing, Margaret Dore was speaking, trying vainly to compress extensive testimony into just a few minutes. It’s a fact of life that even when a committee chair goes out of her way to be accommodating, as did Judiciary chair Marjorie Smith (D-Durham) yesterday, all those who testify late in a hearing bear the burden of everyone’s impatience. Dore is an elder-law attorney from Washington state, and she has come to New Hampshire before to fight other assisted suicide bills. Her experience with her own clients has thoroughly schooled her in the risks of abuse inherent in any law that makes physician-prescribed death just another medical option.

The hallway conversations – and what must be done next

Before the hearing began, I spoke with a veteran legislator from the Judiciary committee. He was not optimistic. “Lobby the Senate. Now.” I raised an eyebrow (perhaps two) and asked for his count of the votes on the committee. He declined to elaborate.

Another committee member caught up with me after the hearing and filled me in on what I had missed. She said the turnout by anti-1325 forces had been great. Then this morning, she wrote the warning with which I opened this post. As if the truth changes at the state line … but I appreciate her candor.

Yesterday, a lot of people did a good day’s work. I wish it were enough. Instead, it’s only round one. If this gets through House and Senate – and I concede nothing at this point – it may come down to a veto by Governor Maggie Hassan. Hassan has not addressed this bill directly, but she did veto a bill last year for an end-of-life study committee, introduced by an assisted-suicide supporter. At that time, she said our focus should be “on helping all of those in our society to fully live their lives with the dignity that they deserve.” That sounds promising.

 

 

“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.”

Sen. Peggy Gilmour

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.