UK: Jane Campbell – “Assisted dying: not in our name”

assisted suicide, legislation, Our News & Commentary Blog, reality check, Switzerland, United Kingdom

The latest move by euthanasia activists in the U.K. is a proposal to extend immunity from prosecution to family members taking terminally ill or disabled people to Switzerland for assistance in committing suicide. Jane Campbell (Baroness Campbell of Surbiton) has written a concise attack on the rationale for granting such immunity in today’s edition of The Guardian:

Today I and hundreds of other disabled and terminally ill people want you to know, we do not want assisted dying to be legalised for “people like us”. I will speak in the House of Lords against proposed amendments to the coroners and criminal justice bill that seek to set this country on the road to legalising assisted dying and, ultimately, euthanasia for people with terminal conditions.

Two distinguished peers, the former lord chancellor, Lord Falconer, and Lord Alderdice, want to remove the threat of prosecution from anyone who assists a disabled or terminally ill person to travel abroad for the purpose of being assisted to die.

She makes an excellent point in spelling out just who has not endorsed these amendments:

We are at odds with the supporters of today’s amendments, who say they only want to help disabled and terminally ill people. Not one organisation of or for disabled and terminally ill people has campaigned for the changes proposed. This includes organisations that advocate on behalf of people with multiple sclerosis and motor neurone disease; two disabling conditions that are often referred to when describing who would benefit most from this legislation.

If you’re interested in how this battle is playing out in the U.K., you should read the rest of Jane Campbell’s commentary.

I only have one thing to add. The amendments are probably an initial step in a “slippery slope” political strategy. It is meant to act as a door opener that paves the way for eventual adoption of broader policies. For example, I would guess that within 1-2 years of this “immunity” granted to people travelling to Switzerland, there would be a very predictable follow-up:

Some people don’t have the money or don’t have the physical ability to travel to Switzerland. If we’ve provided comfort and cover for those with the wherewithal to travel to Switzerland, don’t we have to provide the same protections for those who want to help family members kill themselves at home?

Of course we do. That’s the plan. Don’t think of it as a “slippery slope” so much as a well-constructed roadway. –Stephen Drake

Another child dead – authorities taking it seriously, if belatedly

abuse, autism, crime and punishment, neglect, Our News & Commentary Blog, wrongful death

Kristen LaBrie, mother of nine-year-old Jeremy Fraser, has been charged with attempted murder in connection with the child’s death in March.

Kristina Chew at Change.org has the story:

Yesterday LaBrie pleaded “not guilty” to a charge of attempted murder; she had earlier been charged with child endangerment. The July 6th Associated Press vis WBUR reports that Jeremy was diagnosed with a “severe form of autism” while young. He was diagnosed with non-Hodgkin’s lymphoma in October of 2006 and given an 85 percent to 90 percent chance of recovery. He received “large doses of chemotherapy” and his cancer went into remission. LeBrie was given prescriptions for medications for Jeremy to take at home and this is when the story turns more than puzzling.

According to press accounts that Kristina shares on her blog, LaBrie apparently failed to fill prescriptions for followup medication to treat Jeremy’s condition. By the time the failure was discovered, Jeremy’s cancer had returned – and in an untreatable form.

I urge people to read the blog entry. There is also the confusing issue of a custody battle between LaBrie and Jeremy’s father. Some hard questions need to be asked – Kristina reports that both parents had been subjected to complaints of abuse and neglect numerous times. Where were the authorities who are supposed to monitor families that are the subjects of complaints?

It’s not the first time that the Massachusetts DSS has come under scrutiny – they failed to exercise their duties in safeguarding Haleigh Poutre – until she was beaten into a coma. Then they sued to have life-support withdrawn. –Stephen Drake

Final Exit Network: Investigation Expanding and Members Expounding (or Obscuring)

assisted suicide, crime and punishment, final exit network, media coverage, Our News & Commentary Blog, reality check

The apparent suicide by Phyllis Hixson, in Athens County OH, is being investigated for possible involvement by members of the Final Exit Network (FEN).

The group claims that no one from FEN was present. But that doesn’t matter to Hixson’s younger sister, Jerri Rosson:

She blames the Final Exit Network for providing the plans and support, if not an in-person presence, behind her sister’s death.

Rosson said her sister never mentioned a death wish. She hadn’t heard of the Final Exit Network until investigators arrived at her sister’s home.

“I think it’s wrong, totally wrong. We all have a purpose in life, and it’s not up to us to decide when that purpose is fulfilled,” Rosson said yesterday while tending to funeral arrangements.

“She had a lot of good to give. She was not done. I feel she was rushed into it.”

Meanwhile, Dr. Larry Egbert is out on the road, doing his best to distort and misrepresent the mission of FEN:

“What would you do if your dog is dying and riddled with cancer? You’d take him to the veterinarian and the vet would put him down,” said Dr. Larry Egbert “What would you do if your father was dying of the same kind of horrible cancer? Nothing much, so your father gets to suffer and your dog doesn’t?”

Egbert has been charged in connection to his alleged role in the death of John Celmer, a man who was cancer-free at the time of his death, but distressed about his physical appearance.

Apparently, Egbert thinks it’s best to downplay the wide-open criteria that FEN used to brag about.

Obviously, Egbert and his FEN pals don’t have much faith in their position – or they wouldn’t feel compelled to lie about it. –Stephen Drake


Terrie and Bill – My Own Troubled Thoughts

"end of life", medical decisionmaking, Our News & Commentary Blog, Terrie Lincoln, william peace

Before I get into sharing my thoughts on the two previous blog entries, I wanted to share a little of the backstory that went into the inclusion of Terrie Lincoln’s story on the “How We Die” website.

Last month, I was contacted by Hannah Rosenzweig, who is working on soliciting stories for the “How We Die” series. You can read a lot about the content and goals of the team by reading this section of the site.

Hannah’s purpose in contacting us was to look for “end of life” or experiences about people with disabilities facing the “end of life.” I gave her a shorthand version of the complicated nature of the term “end of life,” which I’ve written about before. Like most people who use the term, she hadn’t thought about just how many diverse situations that innocuous term actually covered.

This provided an opening to pitch Terrie Lincoln’s story to Hannah. I gave her a brief outline of Terrie’s story as I knew it. She definitely found it compelling, but wasn’t sure what to do with it. I think she became hooked when I pointed out that if Terrie’s family had caved into the pressure to take her off the ventilator, we would now say that the family had made an “end of life decision.”

The rest was a matter of getting Terrie and Hannah to connect and communicate – which is how the story of how Terrie lived got to be on a site titled “How We Die.”

Every time I think I’m incapable of being shocked, something comes along to prove me wrong. When I read the first draft of Terrie’s account, I was stunned. It wasn’t so much by the specifics – we get stories like this from time to time and they are eerily similar – the grimmest scenario, with the assurance that the injured person wouldn’t want to live like that. If the family resists, the quality of their caring is called into question. It happens – I’ve heard similar stuff too many times to doubt it.

What really threw me about Terrie’s story is that this happened in two different hospitals in two different states. Could it be that I haven’t been cynical enough about how dangerous it is for people with disabilities in the medical system? And of course, William Peace’s account adds to that strange feeling that things are maybe worse than they seem – and have been for a long time.

Personally, I’m still trying to sort all of this out. But I think that I think it’s best and probably accurate to start out with some basic assumptions:

  • These medical people aren’t “evil” or “bad” people, but operating from what they see as kindly, compassionate motives;
  • They honestly believe that a young woman wouldn’t want to live the life of a quadriplegic;
  • They honestly believe that most families would be better off without the “burden” of a family member with a significant disability.

I am going to go out on a limb and even guess that the fact that Terrie’s family operated from strong Christian beliefs may have been discounted by the professionals they dealt with as “irrational” as opposed to their own “objective” evaluations.

The mostly unchallenged and unquestioned belief in the objectivity of medical professionals (especially in terms of how they regard themselves) can be especially dangerous in situations where someone’s life hangs in the balance.

It’s dangerous because there’s nothing especially objective or rational in the belief held by the medical team that pressured Terrie Lincoln’s family that she’d be better off dead. There’s plenty of research that indicates that people with significant disabilities are much happier with their lives than medical professionals seem willing to believe is possible.

The trouble, I think, is that medical professionals are no more moved by research and factual information than the general public. What sticks with them are the worst memories – the memories of people dying after months of rehab/recovery; the worst points of adjustment to the realization of newly-acquired disability; the stressed-out and maybe cash-strapped families.

For hospital folks, there are no experiences with the power to provide balance to those kind of experiences and the emotional impact that comes with them. Discharges of patients are an unfinished story, with no closure, let alone a happy ending.

It becomes understandable (but not condonable) that some would jump to the assumption that it’s just better to get a peaceful, dignified death than to go through medical hell to live a life with a significant disability.

So what do we do about it?

First, we need more people like Terrie and Bill to tell their stories. And name names where we can.

Because if my thoughts are anywhere near accurate, no amount of teaching or education will be effective in changing the attitudes of medical professionals who engage in the types of behavior covered in the two stories.

So what will work? Exposure. Hospitals and medical professionals seem to hate the experience of having outsiders get a glimpse of some of what they do – especially if outsiders don’t like what they’re seeing.

Exposure and the threat of accountability won’t change attitudes, but it could have a powerful and lasting effect on behavior. I’ll settle for a change in behavior – it’s easier to measure. –Stephen Drake

Bad Cripple Shares Scary Thoughts About How Many People with SCI Needlessly Die

"end of life", devaluation, medical decisionmaking, Our News & Commentary Blog, reality check, william peace

First, housekeeping: I’m saving my thoughts, etc. on Terrie’s story until tomorrow. I’ve removed the “part 1” from the title of the blog post with her story since it really doesn’t belong there.

In the meantime, William Peace at BadCripple read Terrie’s story and it caused some scary thoughts and memories to surface:

Excerpt:

I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied “think about it”. Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. “They were allowed to die with dignity” she told me.

The instance described in the excerpt is from some 30 years ago. Peace fears – as do I – that stories like Terrie’s (minus the survival) are becoming more common over time. Can we prove that? No. But the fact that it’s happening at all is an outrage.

And, btw, if some medical professional writes me to tell me this hardly ever happens… The fact that is that they won’t have any more hard data to base that belief on than I do in regard to my own suspicions. –Stephen Drake