Winnipeg Free Press - ONLINE EDITION
Posted: 04/12/2013 12:56 PM | Comments: 0
The pile of belongings at the base of Susan Griffiths’ stairs ebbed and flowed in the days before her departure for Switzerland. One morning, a bike helmet kept company with a stack of books and an envelope jammed with photographs. The next afternoon the items were claimed, replaced by a fresh mound of treasures.
Griffiths was divesting herself of a lifetime of belongings. Empty hooks dotted the walls of her gracious home where paintings once hung. Red dots discreetly marked some treasures. Loosely organized piles covered the dining room table. All of it, the accoutrements of 72 years of rich existence, had to be dealt with before Griffiths stepped on board the plane that would take her to die.
"You don’t realize how much you collect," Griffiths laughed in the days before she left Winnipeg. "Much of it is spoken for but there’s so much sorting."
Griffiths suffers from Multiple Systems Atrophy, a rare, incurable brain disease. Rather than endure the slow, unrelenting progress of an illness that will kill her by pieces, she has chosen an assisted suicide in Zurich.
The choice seemed inevitable, she said. She didn’t want a painful, lingering death. As she lost her balance and her fine motor skills in the past year, as she started to become dependent on others, she made her choice.
When she first became ill, her doctors thought she had heart problems.
"At first they thought it was angina and I went on this stupid stress test thing. I forgot to take my runners with me and so did it in my winter boots. I could not keep on the damn thing. It kept trying to throw me off.
"I failed that one, miserably."
As she worsened, the diagnosis shifted to Parkinson’s. In late 2011, a neurologist told her it was MSA.
"The diagnosis itself was shocking," said her daughter, Natasha Griffiths. "Everyone, I think, our family, all of my mother’s friends, never imagined her as a person who would end up being ill because she was so fit, so active, so there was the shock of that.
"I am very aware of her independence and her desire to remain independent so it (her decision to die) wasn’t a shock in that sense. I guess it’s a subject that’s been discussed in general terms before. We never imagined it would touch us personally. It’s a shock but I guess we all feel we have to offer our support if my mom is as determined as I believe she is."
In addition to Natasha, Griffiths has two sons. Gareth lives in Germany and Alexander is in Switzerland. They will be present at the Dignitas clinic in Zurich when their mother dies. Dignitas is a non-profit organization offering end-of-life assistance to the terminally ill.
Griffiths said she took a cold look at her future.
"I made this decision because all year I talked about what would happen to someone like me, and with our wonderful home-care system it would mean they would fill my home with all sorts of contraptions, you would have people coming in, who knows how many people, strangers and not always the same people.
"I couldn’t fathom that."
"There is no good option for this disease," said Natasha. "It’s watching my mother endure a slow decline and a lot of suffering and that would be awful or this, which is also awful."
Susan Griffiths leans forward, eyes wide.
"It is awful but the end result is awful too, so you have to go through this process of considering a list of disgusting things in order to come up with the least disgusting thing."
Before her illness, Griffiths was a blur of energy. She played tennis four times a week, gardened, rode her bike and attended theatre and concerts. She cooked for her grandchildren. They joke that their Nana, born in London, taught them "English manners."
Griffiths worked for Manitoba Hydro, retiring after 23 years.
"For most of those years, I was in public affairs as a writer. That was a really enjoyable part of the job because I was sent out to talk to engineers who are sometimes hard to talk to about their wonderful projects like, ‘Mr. So-and-So, what’s it like building a great big dam out of limestone?’ They’d give you something to back up your story, but it would be an engineering paper, which is written in another language altogether.
"So I had a great career there and in the meantime my children were growing up and they had lots of babies."
"I’ve been retired since the end of 2000, so I’ve led a hedonistic life ever since."
She travelled to South Africa, Botswana and Australia and returned repeatedly to Europe.
"I did a lot of travelling, really had a full, full life. I was in the meantime putting away savings for my old age, having no clue it would be spent on what I’m just about to spend it on."
She is, say friends, the kindest and most welcoming person they’ve known.
And then she was gradually diminished.
"I had someone in who said she knew all the facilities for the elderly, where you need lots of care or no care and it sounded like there were waiting lists for all of them and I thought ‘well, that’s not for me’," she said in the days before she took flight.
"If I sell my house and I can’t get into any of these places, where do I go? And then I remembered being in the hospital and there were people in there where they didn’t know where to put them. They were just in limbo and all of the options just seemed to be so completely not like me.
"Then the other aspect of your family having to stand by and watch, I couldn’t stand the thought of that either because it’s not nice watching somebody. And I think one of the things that I read was that you become emaciated and I didn’t want to think of myself as emaciated. I’m so vain."
She laughed her throaty laugh.
Is she dying before she has to?
"I have a gorgeous wardrobe that I can’t wear. So I’ll be meeting people Monday morning at the door in my party dress...
"I don’t feel well all the time. I’m not enjoying my time at all. Every day is an effort to make myself feel good. That’s why I’m wearing my lovely clothes even though I’m not going anywhere."
A silver bracelet glints on her fine wrist. There is a single word etched on the side. "Miracles," it reads. The friend who gave it to her wears a matching bangle. Hers reads "Hope."
She said she doesn’t believe in God or an afterlife.
Griffiths gave another small smile as she shifted the ice pack that numbs the pain in her spine. She carries an insulated cooler filled with ice packs up to bed each night.
Her good friend Judith Hall said it’s tragic Susan has to travel to Europe for a quick and painless death.
"She might only, who knows, have a couple of years of reasonable life like she does now, which is tolerable, but she might have had a few more years. Who can take that chance? What if she couldn’t make the choice when she wanted to?"
The pain is constant now.
"They (the symptoms) incapacitate me completely. I do go for walks, but wobbly ones. This morning, I managed to sit at Westminster Church and listen to Tracy Dahl rehearsing for her concert. I managed that.
"But no tennis, no having grandkids in, which I had five days out of the seven. I can’t drive. I haven’t done that since January. It’s just closed me down completely."
Griffiths has a friend fetch one of the cardboard folders that holds a day’s worth of pills.
"I have to take these every two and a half hours. I start to get shaky because they wear off before I can take another one."
Griffiths will not go quietly. She has chosen to publicize her decision to seek death in Switzerland in order to put pressure on the Canadian government to reconsider its assisted suicide laws.
"We want the law to change. We want there to be a choice at the end of your own life," she said. "We need a law to say we can choose our own death."
Natasha, her face pinched with sorrow, looked at her dying mother.
We need the law, she said, "so people don’t have to go to this length, the distance, the money, the fact that you can’t be in your own home, you can’t have your friends and family with you."
On Monday, a spokesperson for federal Justice Minister Rob Nicholson said the Conservative government will not re-open debate on the topic.
A prominent Canadian ethicist believes it is inevitable the federal government will re-open the assisted suicide debate. The majority of Canadians are in favour, he said, and recent evidence should assuage the concerns of the disabled community.
"Somewhere between two-thirds and three-quarters of Canadians support the idea," said Arthur Schafer, director of the Centre for Professional and Applied Ethics at the University of Manitoba.
"In some polls it’s as high as 80 per cent. You’d have to look hard to find a controversial topic on which so many people are united."
While it’s well known that the Supreme Court denied ALS patient Sue Rodriguez’s request for a doctor-assisted suicide in 1993, Schafer said it’s less known the law was found to violate her individual liberty.
"To prevent someone like Sue Rodriguez from dying while an able-bodied person could, the Supreme Court recognized our right to make that choice."
Schafer said the Charter of Rights and Freedoms and the underlying moral code of Canada dictates "individuals should be able to make decisions for themselves when they are personal and no one else or society is harmed."
When Rodriguez took her own life in 1994, the doctor who helped was not prosecuted. Schafer said it wasn’t because they couldn’t locate the physician but rather that the prosecution wouldn’t sit well with the average Canadian.
He said Griffiths’ daughter, Natasha, or her daughter-in-law, Dana, who accompanied the dying woman to Europe, could technically be charged for aiding a suicide. Filing those charges would be a political disaster.
When the Rodriguez decision came down, the world lacked a solid body of evidence on the results of assisted suicide. Schafer said that evidence is now available and puts to rest the "slippery slope" argument.
The state of Oregon passed the Death with Dignity Act in 1994. It legalized physician-assisted dying. Seven years after the passage of the act, close to 600 people died from ingesting medications prescribed by doctors.
Schafer said the law did not lead to a run on suicides, nor did it threaten the disabled, elderly or other vulnerable populations.
"The data we have, the evidence from Oregon, is that all predictions about the slippery slope are false. The idea that more racial minorities, women, the poor and the disabled would die simply hasn’t been borne out."
The number of deaths in Oregon as the result of assisted suicide is less than one-half of one per cent, he said.
"People said it would be the poor, the uninsured, people who couldn’t afford palliative care. Oregon actually improved its palliative care."
The evidence shows three-quarters of those requesting an assisted suicide had metastatic cancer.
"They’re not in wheelchairs being bumped off because they look funny or can’t do certain things for themselves."
Schafer said the Conservative government is reluctant to re-open the issue because a vocal minority of evangelical Christians and conservative voters oppose the idea.
"Will society’s vulnerable be at risk? I would argue the opposite."
Current cases in British Columbia and Quebec will force the Supreme Court to approve a new law, he said.
Schafer knew Griffiths, whom he described as a "very active person, a cyclist, a tennis player."
"Her current condition would leave her unable to control her bladder or bowels. She wouldn’t be able to breathe on her own. She wouldn’t be able to hug her grandchildren.
"Our law has the cruel effect that once you’re unable to commit suicide, even assisted suicide, you’re stuck."
Both assisted suicide and euthanasia are illegal in Canada. Dr. Bill Pope, registrar of the College of Physicians and Surgeons of Manitoba said he can’t recall a single Canadian doctor being charged with the crime.
"We spend our whole lives helping people to survive," he said. "I don’t think our members would be emotionally prepared to end a life purposefully."
Pope said "the dual effect" comes into play in modern medicine. If a patient is having significant pain, a doctor must give them enough pain medication to relieve the pain as necessary.
"The dosage should be whatever is medically possible to make sure the patient is pain-free."
At a certain point, a high dosage of narcotics will kill a patient. Pope said there’s a world of difference between a terminally ill patient dying from high levels of painkillers and assisted suicide.
Manitoba’s chief medical examiner, Dr. Thambirajah Balachandra, said Tuesday there should be no confusing palliative care and euthanasia.
"The palliative care team is brought in when there is no way the patient can be treated medically. Therefore, the person will be treated with high doses of narcotics."
Like Pope, Balachandra said death sometimes results from the narcotics.
"They treat the patient’s symptoms to keep the patient comfortable. They know a patient may stop breathing."
Balachandra said he has never seen an intentional doctor-assisted death.
"One where they said, ‘he’s suffered enough, let’s kill him’? Never."
Telling the grandchildren, now that was hard.
Natasha Griffiths has six children, ages nine through 21.
"I actually spoke to a counsellor about whether to be honest with them and the advice was, ‘you tell them’," she said. "You don’t tell them more than they need to know. I guess each child was told in a way I thought they could handle."
Susan said her grandchildren came over often in the weeks before she left Winnipeg. The older ones knew she was ill and had made her decision.
"The young ones, it’s normal. I don’t think they notice the changes. But I mentioned something to the 17-year-old and he cried," she said, tears flowing down her own cheeks. "But he accepts it and he has actually asked to come, the 17-year-old (Liam). I was very touched."
Liam will be in Switzerland but not at his grandmother’s bedside when she dies.
The day before her flight, three of her grandsons were at the house, looking at family photos and making tea for guests. Griffiths lovingly critiqued their tea-pouring performance.
"We spent most of our childhood with her," Liam said, his eyes shiny with unshed tears. "I’m OK with this because it’s what she wants to do."
Griffiths is a frail figure at the dining room table. The boys were openly affectionate, hugging her and drawing close for whispered conversation.
Like an ancient Egyptian, Griffiths has chosen treasures to take with her when she dies.
There’s a pink visor with Nana spelled out in stickers. A handmade card declared her the Best Grandma in the world. A paper owl cut by a child’s fingers, a rose rolled from red cloth and a candle are added to the chosen treasures.
The grandchildren, those are the real loss and arguably they are losing the most.
At the clinic, Griffith will sip from a glass of water mixed with pentobarbital. She’ll be dressed in a nightie when she lapses into sleep, then a coma. She has considered her last words.
"It’s going to be such a new experience. I suppose I would say something to my kids. I want them to remember the joyful things."
At the airport, Griffiths said she remained committed to her decision.
"No regrets. None. The future’s grim. This is the right direction," she said, small in the wheelchair pushed by grandson Miles.
"I’m furious with our Canadian tight-ass attitude," friend Jerri Hall said at the airport. "I think everybody has a choice. You shouldn’t be a prisoner in your own body."
As she was pushed to the airport security check, Griffiths’ friends and family wept and waved. She waved back, a frail, distraught and determined woman about to meet death on her own terms.
Susan Griffiths will die April 25 at a Dignitas clinic near Zurich. Surrounded by family, she will be given a glass of water mixed with pentobarbital. Sleep will come in two minutes. Death will follow as her respiratory system is paralyzed.
She has been promised a painless death.
Before Griffiths could be considered for an assisted suicide, the organization had to determine whether she met certain preconditions. She had to prove she wanted to die and that she was competent to make that
decision. Her medical records were forwarded. Her family and friends submitted letters of support. One, Mary Dixon, wrote of the "heartbreaking" changes in Griffiths since her diagnosis of Multiple System Atrophy.
"You don’t just show up, fill out a few forms and then hop up," said Griffiths’s daughter Natasha. When she left Canada a week ago the dying woman had a "provisional green light" for her suicide.
"They will sit with her and question her to determine this is actually a choice she is making freely, that this is what she wants to do."
Griffiths has two appointments with Dignitas doctors before she dies.
The process is costly. Griffiths will spent about $11,000 to die, exclusive of her flight to Europe and other travel expenses. She says that’s a pittance compared to what she’d pay for nursing home care if her illness progressed.
Not only is assisted suicide legal in Switzerland, it is the only country to provide the service to non-residents.
Dignitas uses its website to explain what it offers.
"Many people are afraid of finding themselves in a hopeless condition or unconscious and connected to machines in a hospital and being kept alive artificially for a long period of time," the website reads. "They are afraid of pointless operations and ineffective pharmaceutical therapies. Against this helplessness and feeling of being at the mercy of high-tech medicine, there is only one tried and tested method: patient’s instructions which can be legally implemented."
Griffiths says her Winnipeg doctor does not sanction her decision.
The organization says very few of its members proceed with a suicide.
"Membership of Dignitas endows members with confidence: in the event of a hopeless situation, a member can say ‘I have had enough now, I want to die.’ This feeling of security is of exceptional importance to mature human beings."
Griffiths says she has never second-guessed herself.
"If I could have done it here, I would have done it months ago. I don’t want to suffer."
Griffiths will be cremated in Switzerland.
Multiple system atrophy (MSA) is a cruel, rare disease.
Parkinson Society Canada said MSA occurs randomly in the general population. It strikes four or five of every 100,000 people.
"MSA is a progressive brain disorder which worsens over time," the society said in a statement.
"It has a more rapid decline than Parkinson’s. There is no cure for MSA and the PD (Parkinson’s disease) medications are not usually effective in MSA, so a diagnosis can be devastating for clients and their families."
The disease does not appear to be inherited. It usually starts between the ages of 50 and 60 years, although it can affect people younger and older than this.
There is no treatment to slow the progression of the disease.
In the early stages, it’s difficult to differentiate MSA from Parkinson’s. Generally, MSA has a more rapid decline and no tremor. Patients often have bladder problems, dizziness on standing, fainting, difficulty turning in bed and changes in writing.
Some people become clumsy or unsteady when walking, increasing risk of falls. Blindness and an inability to walk may follow. Eventually, patients lose the ability to perform basic functions independently.
Patients and their family can contact the Parkinson Society (www.parkinson.ca) for support and information.
Under Canadian law, committing suicide is not a crime. Physician-assisted suicide is illegal.
Section 241 (b) of the Criminal Code states:
"Every one who counsels a person to commit suicide, or aids or abets a person to commit suicide, whether suicide ensues or not, is guilty of an indictable offence and is liable to imprisonment for a term not exceeding 14 years."
The law was challenged by British Columbia’s Sue Rodriguez in 1993. In a 5 to 4 decision, the Supreme Court of Canada ruled against Rodriguez. She ended her life in 1994.
A 1995 Special Senate Committee on Euthanasia and Assisted Suicide recommended governments make palliative care programs a top priority in the restructuring of the health care system. Among its other recommendations was that the Criminal Code be amended to provide a less severe penalty in cases in which "there is an essential element of compassion or mercy." A minority recommended the Criminal Code be amended for competent individuals who are physically incapable of committing assisted suicide.
In June 2012, the B.C. Supreme Court struck down the prohibition against doctor-assisted suicide, calling it discriminatory. The case was filed by Gloria Taylor, a woman with ALS who sought an aided suicide. Taylor died of natural causes after the victory. The federal government appealed the decision and filed a 54-page legal argument. The results of that appeal should come in the next few months.
In 2012, a landmark report in Quebec recommended doctors be allowed to help terminally ill patients die in exceptional circumstances and when they have requested the option. The Dying With Dignity Committee recommended a law be adopted by June 2013.
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