Chapter 37: Alzheimer That Ends Heimer

Give us dignity or give us (If we choose) death.

This past August, the Supreme Court of British Columbia began hearing a landmark case. The family of Margot Bentley, an 82-year-old in the final vegetative stages of Alzheimer’s disease, was suing Maplewood, the Abbotsford, B.C., nursing home where Bentley was a resident, Fraser Health, the area’s governing health authority (a publically funded provincial agency overseen by the Health Authorities Act) and the B.C. government for failing to stop forcibly spoon-feeding Bentley and thus refusing to allow her to die. This was precisely the desire that Bentley, a senior registered nurse herself with long experience of aging, had expressly spelled out in her living will drafted and witnessed 22 years earlier.

At the same time that the Bentley case began to unfold, a play called Alzheimer That Ends Heimer, written by Toronto journalist and author Jay Teitel, debuted at the SummerWorks Theatre Festival in that city. The play – possibly the first musical ever conceived about Alzheimer’s disease – took the form of a lecture-turned-cabaret and chronicled the 12-year voyage the author’s father had himself taken through “the wonderful world of dementia.” (The title, according to Teitel, is an ironically light-hearted take on Shakespeare’s All’s Well That Ends Well. “Clearly,” he says, “all does not end well with this particular ailment.”) At first glance, the only thing the lawsuit and the musical appeared to share was the common thread of Alzheimer’s. But in fact both events were informed by the critical issue at the core of the burgeoning phenomenon of dementia today: our dignity, our right to preserve that dignity in any way we see fit and our resulting attitude toward the prospect of long life itself.

First, a little background about the lawsuit. In 1991, Margot Bentley (whose father was, coincidentally, a Court of Appeals judge), motivated by what she considered the unbearable humiliation visited on patients in her care by Alzheimer’s, composed a one-page living will that described her wish to be allowed to die if she ever found herself in a similar condition. Under those circumstances, she wrote, “I direct that I be allowed to die and not be kept alive by artificial means or ‘heroic measures.’ ” She also stipulated that if it was certain she had no chance of recovery, care workers were to dispense “no nourishment or liquids.” As well, if she ever deteriorated to the point where she couldn’t recognize her family, “I ask that I be euthanized.”

Her apprehension was tragically prophetic: she started displaying the symptoms of Alzheimer’s when she was only 68. By 2011, at the age of 80, she was ravaged by the disease. She couldn’t walk, talk or recognize her family; a hoist had to be used to lift her out of bed, and she was surviving only through regular spoon-feeding, during which her mouth would open reflexively when tapped with a spoon. At this point, her daughter, Katherine Hammond, who was named proxy in Bentley’s living will, contacted Maplewood, the nursing home, which had initially agreed to have her mother’s wishes carried out; namely, the cessation of feeding and “mercifully administered” medication. This is where Fraser Health, the authority overseeing Maplewood, stepped in (largely in the person of Dr. Doris Barwich, Fraser Health’s program director for end-of-life care) and reversed their previous agreement to stop the feeding, which they now refused to do. After a year of stonewalling from Fraser Health, Hammond suggested two solutions: either move her mother to a local hospice or to her own home. Fraser not only rejected both suggestions but went an amazing step further. “I talked to a [Fraser Health representative],” Hammond later told reporters, “and said, ‘Just to be clear, if we try to transfer my mom tomorrow, what will you do?’ She [the representative] said, ‘We will physically stop you.’ ” Fraser Health also vowed to go to court to seek guardianship of Bentley if the family tried to move her.

Fraser Health’s stance wasn’t just bizarre – it was legally unprecedented. B.C. has had a Health Care Consent and Care Facility Admission Act since 1996, which makes “advance directives” on refusing care perfectly legal. Virtually every week, facilities in the province cease care to patients under just such directives. Fraser Health’s issue seems to be the distinction between tube-feeding, which it thinks the B.C. law defines as health care, and spoon-feeding, which it thinks it doesn’t. If they failed to spoon-feed Bentley, they claim, they and their caregivers could be charged with neglect and be liable for criminal prosecution. Barwich told Postmedia that she drew the line at halting spoon-feeding. “I don’t feel that it is something a patient should be asking a health-care professional to do,” she said, adding, “It basically violates the oath I took as a health-care professional.”

An overwhelming number of legal and medical experts beg to disagree. Andrew Edelson, Bentley’s doctor, says Bentley doesn’t have the ability anymore to choose whether to eat or not because if she did, she’d refuse. “She’d clamp her mouth shut.” “Think about it,” says Joan Rush, a now-retired B.C. lawyer who specialized in health-care law. “You could be putting poison on the spoon, tap her on the mouth, and she’d take it. Do you think that’s valid consent?” Robert Gordon, one of the original drafters of the Health Care Consent and Care Facility Admission Act, is even blunter: “I suspect [Fraser Health] is getting its legal advice from the back of a Corn Flakes packet.” He and most legal scholars think that Fraser Health is far more likely to be charged for continuing to spoon-feed Bentley than for stopping.

When it first hit the papers, the case not only outraged me personally, it also clarified something I’d been thinking about. For a while, I’d wondered, as no doubt some of you have, which way I’d most prefer to “go.” How did I want to die? In surveys, doctors themselves overwhelmingly choose some huge sudden trauma, like a massive heart attack. What most of us fear is a long, progressive physical decline, especially one that’s ugly and painful. So if I had to choose between a terminal physical disease or Alzheimer’s, it seemed logical to opt for the latter. With Alzheimer’s, although there is a well-documented period of anxiety and frustration (while the person is still aware that something is happening to them), that period almost always ends. So, on balance, if I had to make that grisly choice, I thought, I’d chose losing my mind in a pain-free body as opposed to having a clear mind trapped in a pain-ridden one.

That’s when I read about the Bentley case. Shortly afterward, I went to see Alzheimer That Ends Heimer. In his play, Teitel – who is a contributing editor at Zoomer magazine and who writes regularly for it – plays himself and the Narrator. Near the beginning, the Narrator goes on about the kind of sadness you find on the “locked [Alzheimer’s] ward” in nursing homes, which, he says, too often turns into pity. “And pity,” says the Narrator, “is the worst indignity you can inflict on another human being.” If his show does nothing else, he swears, it will “restore some dignity, if only for an hour, to my father’s life and to the lives of people like my father.” The songs and humour that follow, black and otherwise, are all about dignity, defending and fighting for it, even when the battle is a losing one. Dignity is the thing we see his father, a charming and witty guy, continually trying to rescue, usually with a punchline. At one point, he forgets who his son is and orders him out of his apartment. Teitel has to call his mother and have her talk to his father to convince him that he is, in fact, sitting beside his son. “Well, I’ll tell you one thing,” his father says, without missing a beat, “if this shmegeggy’s my son, I’m not having any more children.” At another point, Teitel’s mom, who likes to give his father quizzes to keep him sharp, asks him: “Abe, how many children do you have?” His father looks at her for a while, then says, “As many as you have.”

What the Bentley case and Teitel’s play show is that Alzheimer’s is not, regardless of surface impressions, necessarily an easier way to spend one’s final days than a terminal physical disease. Indignity is the pain of cognitive decline; it’s just a different kind of pain.

What do we fear about growing old? Unbearable physical pain and the pitiable indignity of losing our mind. Most pain can be treated with good care and
good drugs and by letting people decide for themselves when the pain
can no longer be borne. Indignity can be alleviated with good care and absolute respect, also, by letting people decide for themselves when the indignity should not be borne. The problem is that in both cases people sometimes need help at the end, even if only passively. Shame on anyone who is in a position to provide that help and actively refuses. Shame on the Fraser Health Authority. We all deserve better.

Moses’ Zoomer Philosophy — which launched in ZOOMER Magazine in October 2009 — is a series of monthly essays on age and aging, and the secrets and the science to living better, longer, healthier and happier lives. The first volume of his collection is now available in e-book format on the Kobo Books website.  Click here for more information.