“Alleviating suffering is different from eliminating the sufferer”: confronting the Massachusetts assisted-suicide bill

Undeterred by the defeat of a 2012 ballot initiative promoting physician-assisted suicide (PAS) in Massachusetts, legislators there are working to enact PAS via legislation. I went to Boston today to listen to the hearing on the bill, H.1998. I stayed only two hours, but that was long enough for me to see that the people who want to legalize PAS are relentless. Are those of us opposed to doctor-imposed death just as determined? We’d better be.

Today was one of those days when my social media skills fell flat. I tweeted throughout the hearing – or so I thought. I found later that the tweets never got past my valiant little phone. They’re all unsent drafts. They actually serve as decent notes.

At MA state house for assisted suicide hearing. Many people sporting “My life my choice my death” stickers.

Massachusetts Citizens for Life sent an email this morning claiming that pro-PAS groups were busing in supporters. I can’t verify that, but I can say that the crowd of more than 200 people included an awful lot of folks with those identical green stickers.

Committee chair cautions all to be respectful of those speaking on this “sensitive topic.”

Respect wore thin after the first 90 minutes at this hearing with the Joint Committee on Public Health. There were people testifying that there’s nothing compassionate about killing, and then there were people objecting to anyone saying that. The presiding officer, Rep. Jeffrey Sánchez (D-Jamaica Plain), finally made it clear that he didn’t want anyone accusing anyone else of lack of compassion.

Rep. Sánchez also made it clear that he favors the bill, although he has “struggled with it.”

MA Medical Society testifies in opposition to physician-assisted suicide. “Incompatible with physicians’ role as healer.”

Former Massachusetts Medical Society president Dr. Barbara Rockett, speaking for MMS, was brief and blunt in opposition to PAS. “This is incompatible with the physician’s role as healer.” She went on to say that MMS opposes legislative tinkering with the practice of medicine, which she sees in the bill’s assorted “requirements.” Dr. Rockett was active in the defeat of the PAS ballot initiative, saying during that campaign, “To substitute physician-assisted suicide for care represents an abandonment of the patient by the physician.” 

Interesting: one of the bills today would prohibit health care pros from participating in the torture/abuse of prisoners. Drs testify re Do No Harm ethic. Will same drs apply that Do Not Harm ethic to PAS?

H.1998 was one of twenty bills on the agenda, although it drew most of the day’s testimony. Two other bills, one from each chamber, would “prohibit the participation of health care professionals in the torture and abuse of prisoners.” Physicians and psychologists provided vivid and compelling testimony favoring such a ban. Several of these professionals related how the co-opting of medical professionals in the torture of prisoners violates the “do no harm” ethic. These same professionals did not apply that ethic to H.1998, and in fact were silent on PAS today.

state rep Adkins (sp?) supports PAS, comparing force-feeding against patients’ will to torture.

Rep. Cory Atkins (D-Concord) came out in strong support of PAS, asking “who is in charge of us at the end of life?” She evoked the specter of force-feeding of dying patients against the express wishes of those patients, calling it torture and saying that families who insist on feeding dying loved ones do so “to make themselves feel better.” Chairman Sánchez found nothing objectionable in that declaration, judging from his silence as his colleague spoke.

One could make the case that a dying person’s family members might support PAS “to make themselves feel better.” Or would that be an uncivil thing to say? Would the chairman have been moved to interrupt someone making that claim? I can only guess.

Rep. Atkins declined to say who’s force-feeding a patient if the patient has an advance directive barring such an activity. Massachusetts already has a durable power of attorney/advance directive law on the books. If the kind of force-feeding Rep. Atkins describes is happening, it’s happening in violation of the law. And if medical professionals and law enforcement officials can’t handle a written order regarding feeding, that gives me no confidence that a PAS law full of “safeguards” would promote patient safety.

If Rep. Atkins is right about force-feeding going on in violation of patient wishes, that means the durable power of attorney law is being ignored. Her colleagues did not question her about that today.

MACLU supports assisted suicide bill; right to be free of “unnecessary suffering.”

Carol Rose of the Massachusetts Civil Liberties Union testified in support of PAS, immediately after testifying in support of the anti-torture bill. She said we all have a right to be free from unnecessary suffering, which makes me wonder what “necessary” suffering looks like in the CLU’s eyes. She also warned of “scare tactics” from PAS opponents. She claimed that the experience in Washington and Oregon, where PAS has been legal for years, shows that abuse of the system Just Doesn’t Happen. Besides, she said, the state has no business being involved in end-of-life decisions.

Her assertion that abuse doesn’t happen requires taking a lot on faith. The Patients Rights Council has tracked euthanasia measures all over the world, including the ones in effect in the U.S. Their information about Oregon’s PAS law includes a warning about incomplete record-keeping regarding acts taken pursuant to the law.

One legislator, whose name I unfortunately did not catch, questioned Ms. Rose: if the state has no business being involved in end-of-life decisions, why do you want the state involved in encouraging suicide? Ms. Rose’s answer was as chilling as it was simple: if the patient is terminally ill, then it’s not suicide for the patient to take her own life.

Her answer was not an aberration. A retired psychiatrist, who is also a former medical director of a hospice, echoed her thought, saying PAS is “not suicide as we understand it.”

Several pro-assisted suicide people testifying re agony of watching a parent die. I’ve been there. Not easy.

Not easy, indeed. Yet PAS is supposed to be about the patient, not the patient’s loved ones, if I understood the bill’s supporters today.

Every supporter of H.1998 who was not affiliated with a group testified about a loved one’s suffering and death. I saw today, and I’ve seen at similar hearings in my own state, that people promoting suicide have no reluctance to tell their stories. People opposed to state-sanctioned, physician-aided death will learn to speak up about their own experiences and those of their loved ones – or else they will lose the political argument, plain and simple.

MCFL: bill encourages lying on death certificate by saying “suicide” won’t be listed as cause of death in PAS cases.

I’m glad Massachusetts Citizens for Life got this into today’s record. This is a feature of every assisted-suicide bill I’ve ever read, including those that have been introduced in my own state: deaths pursuant to PAS are not to be listed as “suicide” on the patient’s death certificate. Whose delicate sensibilities are offended by recording the truth? Does the medical community honestly think that such subterfuge will prevent distrust between patient and provider?

 “Alleviating suffering is different from eliminating the sufferer.” – John Kelly

“To have power of life and death over a person is criminal.” – Kate Ryan

Powerful testimony against PAS came from John Kelly of Second Thoughts, a disability-rights advocacy group, and from Kate Ryan, an advocate for people with autism. I tweeted (well, thought I tweeted) their best lines, which beautifully crystallize the passionate concern for human dignity shared by opponents of H.1998. In their own ways, Kelly and Ryan defended inherent human dignity, not a dignity that depends on being healthy or physically independent or mentally intact. Kelly actually got the attention of the committee, and most of the people in the room – I was sitting in back and could see this – when he started his testimony by taking legislators to task for not making sure sidewalks were cleared around the State House. “That kept some of our people from getting here today.”

#boom, as the social-media saying goes.

Also supporting the bill: Compassion and Choices, a PAS-advocacy group active nationwide. No surprise. C&C sends a lobbyist to any state contemplating end-of-life legislation. Oh, that name! The euthanasia movement has come a long way (and learned a lot about marketing) since the days of Derek Humphry’s Hemlock Society. The C&C lobbyist today said that the ballot initiative failed because PAS opponents outspent pro-assisted-suicide forces 5 to 1  on a “media blitz” of misinformation. (That’s the same figure claimed by assisted-suicide supporters the night the ballot initiative failed, before the final expenditure reports had to be filed.) He considers the legislative route for PAS to be a more considered, more measured way to get the job done.

Keep the public at a distance, in other words. The Massachusetts legislature and governor may yet manage to do just that.

So what’s on your state’s agenda?

 

 

 

 

A change of heart: assisted-suicide advocate changes her view

Jeanette Hall of Oregon was one of the voters who helped put that state’s assisted-suicide law on the books more than a decade ago. That was before she was confronted with her own cancer diagnosis. What happened to change her mind? Hint: it wasn’t so much “what” as “who.”

Read Jeanette’s story in her own words at the following link – and while you’re in the neighborhood, check out the rest of the blog.

http://alexschadenberg.blogspot.ca/2013/12/jeanette-hall-i-say-no-to-assisted.html

“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.

 

Do Not Even Think About Trying To Resuscitate

A nurse at an assisted-living facility in California followed her employer’s rules last week and stood by as an 87-year-old woman lay dying. A 911 dispatcher urged the nurse to help the woman anyway. According to station KCAL in Los Angeles (a CBS affiliate), the dispatcher asked the nurse who had made the call, “Are we just going to wait and let this lady die?” The nurse replied, “Well, that’s why we’re calling 911.”

I would like to shake that dispatcher’s hand. End-of-life care is a challenge; there was a policy at the facility in question not to perform CPR; the deceased woman, unnamed in the KCAL story, may have had a Do Not Resuscitate (DNR) order through her own choice. Even so, how can we not cheer for someone whose gut-level reaction to a moment of crisis is to care, not to abandon?

A question has been nagging at me after learning of this woman’s death: how far are we from DNR being everyone’s default medical order? More questions arise. If a facility’s DNR policy is appropriate for an 87-year-old, how about someone who’s 85? or 65? Someone has to decide if there’s a cut-off age. No-CPR was the facility’s policy. The news carries no word on whether the deceased woman voluntarily signed a DNR, or if signing one was a requirement for admission to “assisted living.” Assisted? Really?

I heard about this story briefly on NECN this morning, and I went online to find more information. There are blog posts a-plenty, but it took me some time to find the hard news story. CBS Los Angeles has already moved on to other things, with this story no longer on the home page of the web site as of this morning, although it’s available via the link above.

I was with both my parents in their dying days. My father died in a hospital, from cancer.  My mother died in hospice after two weeks in a hospital, after a fall and fracture that led to multiple organ failure. Their wishes for no CPR were clear and, in accordance with our Catholicism, absolutely appropriate. Their wishes were not dictated by a medical facility. There was therefore no hint of denial of care. I am under no mandate, religious or otherwise, to seek physical immortality for myself or for anyone else. That’s the stuff of horror stories.

Even so, I’m haunted by what we don’t know about that woman in California, who died in the hospital after being transported from the “assisted living” facility. Where was she when her heart stopped?  If the facility has a DNR policy on all residents, why even call 911? Was she dead on arrival at the hospital, or did she die sometime later?

CBS Los Angeles’ news story quoted both an attorney and a physician who were appalled by the action, or inaction, of the nurse on the scene and by the facility’s policy. The woman’s family apparently has no issue with the policy, so litigation is unlikely. Ethicists will argue about this case, and that’s about it.

Perhaps this goes on at facilities all over the country, and most 911 operators find such calls unremarkable. We are all the poorer if that’s the case. If a facility makes the decision about denial of care, that is a far cry from the patient autonomy that used to drive public policy debates about end-of-life care.

Rep. Rowe’s straight talk: “The total thrust of this bill is euthanasia”

Rep. Robert Rowe (R-Amherst)

Rep. Robert Rowe (R-Amherst); photo by Ellen Kolb

New Hampshire advocates of physician-assisted suicide have finally learned what some public-policy activists never figure out: sometimes it’s more productive to go after a big goal one little slice at a time. Rep. Charles Weed (D-Keene) has seen the light, allowing his HB 403 to be amended by the House Judiciary committee into a bill to “study end-of-life decisions.” The original bill sought to set up a commission full of “experts” to investigate “death with dignity.” The House passed HB 403 this week, where it awaits a Senate hearing.

Rep. Robert Rowe (R-Amherst), ranking Republican member of the Judiciary committee, wasn’t having any of it. Rowe used to lead Judiciary when the Republicans were in the majority. He is not a man to pick fights. He values collegiality. He also values plain speaking.

At the conclusion of the debate before the February 20 House vote, Rowe spoke up despite Speaker Norelli’s attempt to gavel him down. “The total thrust of this bill is euthanasia.” He is absolutely right. He knows that Rep. Weed has tried twice since 2009 to promote physician-assisted suicide. I consider it unlikely that Weed has abandoned his goal.

The House passed HB 403 on a division vote, 212-140, with no roll call. This comes after inexpedient-to-legislate votes on Weed’s earlier assisted-suicide bills by votes of 242-113 in 2010 and 234-99 in 2011.

Rowe was joined by Rep. (and physician) Joseph Hagan (R-Chester) on the House floor to speak against the bill. They were countered by Rep. Rick Watrous (D-Concord), Judiciary committee member and co-sponsor of the bill, who attempted to allay fears. “This will study end-of-life decisions, including hospice and end-of-life care,” he said. “It’s been awhile since the legislature has looked at this. It’s time to do so again.”

What has changed since the last time the legislature “looked at this”? In a word, money. The legislature should not be open to everything. It ought to come down hard & fast against any move toward legalizing physician-assisted suicide. If that option is on the table, in a world of spiraling health care costs, it will prove irresistible. Care is expensive; ending it is cheap.

That debate is yet to be joined in full here in New Hampshire, but it’s coming.

Basic Books

I expect this to become a recurring feature in this blog. I’ll recommend books that have influenced me in my pro-life journey.  I’d like to hear your recommendations as well; I always enjoy discovering new good reading!

Today, it’s something old & something new.

Deadly Compassion: the Death of Ann Humphry and the Truth About Euthanasia by Rita Marker (1995, William Morrow & Co., ISBN 9780688122218; also available as PDF download at http://www.patientsrightscouncil.org/site/deadly-compassion/)
Unplanned: the Dramatic True Story of a Former Planned Parenthood Leader’s Eye-Opening Journey Across the Life Line by Abby Johnson with Cindy Lambert
(2010, Tyndale House Publishers, Inc., ISBN 9781414339399; also available as e-book)

Deadly Compassion
Don’t be put off by the ponderous title. This is the best one-volume briefing available on the pro-euthanasia movement.  The style of writing makes for easy reading, despite the heavy topic. Rita Marker is founder and director of the Patients Rights Council, formerly the International Anti-Euthanasia Task Force, based in Ohio. In the course of her work, she met Ann Humphry, whose husband Derek Humphry was a leading light of the Hemlock Society. At first on opposite sides of a seemingly impassable philosophical divide, the two women formed an unlikely friendship that ended only with Ann’s tragic death, the circumstances of which were closely tied to the movement founded by her by-then-estranged husband.

Chapters alternate between the story of the friendship and the history of pro-euthanasia activities. At first somewhat jarring, this arrangement becomes smoother after the first few chapters. By the end, which is harsh even though the reader can see it coming, the personal and the political have merged to devastating effect. Marker does not resort to melodrama, although you might be misled into thinking so by some of the jacket blurbs. Marker’s smart enough to know that the bare facts are dramatic enough on their own.

Seventeen years after publication of this book, euthanasia advocates have scored some serious victories here and abroad. Reading Deadly Compassion is one good way to prepare to participate in the ongoing debate. Marker’s work with the Patients Rights Council continues today.

Unplanned
You’ve probably heard by now of Abby Johnson. A former Planned Parenthood clinic director in Texas, Johnson is now a full-time pro-life activist. She wants the world to know what PP looks like from the inside, and she is tenacious in calling for examination of PP’s finances.

Hers was not an overnight conversion. She went to work for PP out of compassionate motives, believing that women’s health was a priority there.  Two experiences in particular forced her to question what she was doing.  She was once asked to assist at an ultrasound-guided abortion to terminate a 13-week pregnancy. The image of the preborn child as the abortion was completed left her shaken. Later, as a clinic director, she was shocked to be given an “abortion quota” by PP, which clearly put the bottom line ahead of women’s health.

While this was going on inside PP, an exceptional ongoing pro-life witness was maintained outside the facilities. Protesters who were abusive toward PP workers had only increased solidarity within PP. A group called Coalition for Life took a different approach, relying on peaceful prayer and gentle communication. Gradually, as Johnson saw Coalition members outside her facility day after day, she got to know some of them. The personal connection was critical as Johnson attempted to come to terms with her doubts about her work.

The Coalition is the group responsible for the 40 Days for Life campaigns nationwide, and Johnson’s story is a testament to their effectiveness. Coalition leaders (including David Bereit, who will be visiting NH later this year) became mentors and friends to Johnson, standing by her as she came to her decision to leave PP.

From the Foreword: “I reveal my story not because I am proud of it. I am not. But my thinking and choices are not unlike those of so many people I have encountered. And until we each set aside our own preferences for how we wish others would think and behave, or how we assume others think and behave, we won’t be able to understand those with whom we differ in order to engage in real dialogue and discover truth.”