MONTREAL — The prosecution arrived first, in black robes with white bibs, wheeling boxes of evidence behind them.
Then came the defense team, public defenders, also in robes. There was the accused, Michel Cadotte, 56, who sometimes hung his pen or pencil from the collar of his T-shirt as he walked slowly to and from his pre-trial hearing this week. There was his sister. And there was the sister of the woman that Cadotte allegedly killed.
It might seem strange for them to have arrived together, but they are family. Cadotte was charged with the second-degree murder of his wife of 19 years, Jocelyne Lizotte, who had Alzheimer’s disease. His lawyers have argued that it was an act of compassion, and his late wife’s sister testified at his bail hearing in June so that he could be released.
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Dr. Ferrier is absolutely right. The US (can’t speak for Canada) needs to do all it can to help caregivers: respite care, adult day centers, home health care — do everything possible to give them a break. It would be great if Medicare or Medicare supplement plans would cover at least some of the costs. Make some kind of paid leave mandatory for caregivers of immediate family members. Even four weeks/year would help if you could take it in 1/2 day increments.
And once long-term care is unavoidable, do everything possible to make residents feel valuable and loved. Just because your loved one doesn’t know your name any longer or doesn’t appear to recognize you, doesn’t mean it’s true. My 61-year old husband has been in long-term care for almost two years due to his frontotemporal degeneration (dementia); it shares features with Alzheimer’s but is a separate illness. There’s definitely been a decline. He still knows my name, but we’re not sure he realizes he knows I’m his wife. But he still lives in the moment and we can still enjoy each other on a good day. His neurologist (a nationally-recognized expert in these illnesses says we do not know exactly what he or any other patient can perceive. They may understand more than we recognize but just can’t tell us.
A friend has his wife in the same facility. She is older than him and has Alzheimer’s, is wheelchair-dependent, has to be fed pureed food by hand, and can’t say a word. (My husband can still walk, get dressed with help, eat on his own, sometimes respond to simple directions, and sometimes answer simple yes/no questions.) This guy’s wife doesn’t know my name, but we think she knows my voice and my face. I can usually get her to laugh. And she has the most dedicated husband in the world. She has a good life and so does my husband.
All that to say, I totally oppose assisted suicide/euthanasia (AS/E) in every situation. It’s always a permanent solution for a problem that can be improved greatly, if not totally alleviated.
But I oppose AS/E for people with dementia 100 times more even if they have signed an advanced directive. Why?
1) We have no way of knowing if they would want to change their mind if they specify I want to die when…I can no longer…whatever.
2) It could lead to exploitation. “Mom, you said you signed that paper that you wanted to die when you couldn’t drive, read, and needed to use Depends at night. Well, it’s time now.” What if that’s true, but the real motivation is to bump Mom off so she doesn’t spend our inheritance on a long-term care facility. Or she’s just becoming difficult to deal with and you want her out of your life. Better to say, “Well, you signed this paper…Is this something you still want to do now? Would you like to hold off for now instead?”
3) It could lead to the exploitation of the poor and middle class. Great way to save $$$ on Medicaid for nursing home care if you can get them to sign something that says you get only three years of Medicaid nursing home funding. After that, you’ve got 30 days for someone to take you out of here, or what’s it going to be: the needle or the pills? Unless you have unlimited resources, middle-class families can’t pay nursing home or assisted living bills indefinitely, even with long-term care insurance.
4) It sends people with dementia (as well as other people with disabilities) that yeah, you’re right. You’re live isn’t worth much any more. Better to die now and get out of the way.
I was recently asked what I’d do if my husband changed his mind about AS/E (he has also opposed it), was able to get it approved even given his current cognitive state, and it was legal or I could get him to a place where it was legal, would I approve it as his health care power of attorney?
My answer was no. But one of his sisters is his alternate power of attorney and I know she’d approve it in a heartbeat. I’d turn power of attorney over to her and she could approve it. It would break my heart; not sure I’d ever get over it.
4. WHAT ARE THE BEST METHODS FOR DRAWING LIFE TO A CLOSE?
The proxies have a variety of measures they can select
to ensure that their patient has a meaningful, peaceful, & pain-free death.
If any organs are going to be donated after death,
then such evaluations should take place before the process of dying begins.
Usually all life-support systems will simply be discontinued.
This includes all machines attached to the patient.
Food and water provided by any means will be discontinued.
All medications (except those needed for comfort) will be withdrawn.
Some forms of sedation might be relevant,
especially if the patient is suffering pain for any reason.
And terminal sedation might be appropriate if it seems best
to keep the patient completely unconscious until death occurs.
In Alzheimer’s patients who have no other major medical problems,
the cause of death should be recorded as progressive Alzheimer’s disease
and the medical methods of managing dying should be named:
withdrawing a feeding-tube, ending all life-prolonging medical treatments,
increasing symptom-controling drugs, beginning terminal sedation, etc.
The complete medical record will describe the mental decline of the patient
because of Alzheimer’s disease or some other cause of dementia.
A few other medical facts might be relevant for the death-certificate.
If the safeguards introduced above have been fulfilled,
then the specific last steps towards death will not be as important
as the process of making a set of wise, end-of-life medical choices.
When properly decided, a timely death might be the best end-of-life choice
for any of us who might be struck by Alzheimer’s disease.
Often the choice is not between life and death
but between dying now and dying later.
If we suffer advanced dementia, when is the best time to die?
If someone *develops*, rather than *suffers from* advanced dementia, the time to die is where natural death occurs, not a time that a board or committee says it is. Of course, a person’s health care power of attorney should honor his/her advanced directive, like DNR, no feeding tube, etc. That’s different.
Please drop the pejorative term *suffers*. As long as a person with advanced dementia receives good care, knows he or she is loved, and enjoys simple pleasures like fresh air, music, human touch, and soothing voices, and is not in pain — we really don’t whether he or she is suffering, do we? No one’s been able to come back and tell us, have they? We think they suffer, but maybe they’re just fine.
I watched 3 generations of my family (5 people) die of Dementia and at the first sign, while I am still capable, I’m committing suicide. I will not put my family through what I experienced.
I am furious that the government has forced me to make that decision. I am furious that I have to resort to the horror of suicide because they don’t respect my rights.
MAKING END-0F-LIFE DECISIONS
FOR PATIENTS WITH ALZHEIMER’S DISEASE
Wise law would authorize future patients
to specify the conditions under which they would request death.
And they would have to appoint proxies
to interpret and enforce their wishes.
Then, when mental decline prevents the patient
from making any further medical decisions,
the proxies are fully empowered
to make the same decisions for their patient.
The laws would have to be expanded
to include this comprehensive proxy-power.
All of the medical facts and recommendations
should be taken into account by the proxies.
They might also consult others in the family
and even religious advisers to see if death at this time
would be better than waiting for death as some later time.
Here are 15 safeguards, some of which might be included
in any new legislation either at the national level or in the provinces.
And we should remind ourselves that life-ending decisions
are already being made for patients with Alzheimer’s disease.
Gentle poison is not the only method of dying.
What we lack is a set of public safeguards
for making medical decisions for patients
who have lost the capacity to make their own medical choices.
https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-MD-ALZ.html
“And we should remind ourselves that life-ending decisions
are already being made for patients with Alzheimer’s disease.”
Such as for example? Can you be more specific about what you mean by this please?
We are very sentimental about death and dying, generally speaking, here in North America. To allow assisted death for someone who is still conscious and cheerful certainly seems immoral; but do we have to wait until someone has suffered for years and/or is in excruciating pain? Each case needs to be assessed individually, and that’s where it gets too complex for governments and organizations, ill-equipped to provide anything but umbrella solutions.
As caregiver to my parents, both with dementia and Alzheimer’s, I can see both sides of the argument. As a family, we are doing everything we can to ensure that they each receive the best quality-of-life possible, and we have had NO ASSISTANCE from government, because the options available to us are ridiculously inconvenient and not suitable. My father is stable and happy; my mother (Alzheimer’s and aphasia) is emotionally distressed and deteriorating. She has expressed a desire to “go”, but of course there’s no way of knowing if she really does want to die, or if she’s just tired of battling the changes going on in her brain, and her feelings of isolation as a result of not being able to communicate with us very well.
Let’s look at providing more assistance to family caregivers, more training to professional caregivers, more caregivers PERIOD (there’s going to be a huge need) and doctors who understand the nature of dementia and who can be more helpful without prescribing undesirable drugs. Drugs are not the answer.
I want the option for assisted dying if I am diagnosed with Alzheimer’s – I have no fear of leaving this life and do not want to spend my last decade in and out of awareness. We need to address this so that each individual can make an informed choice, and the system needs to be adjusted to take into account a wide range of possibilities.
“Let’s look at providing more assistance to family caregivers, more training to professional caregivers, more caregivers PERIOD (there’s going to be a huge need) and doctors who understand the nature of dementia and who can be more helpful without prescribing undesirable drugs. Drugs are not the answer. ”
“…and the system needs to be adjusted to take into account a wide range of possibilities.”
Bingo all counts.
P.S. http://myalzheimersstory.com/2017/02/01/a-dementia-care-message-for-the-canadian-senate/
“More caregivers, training, etc. etc.” Like that’s going to happen! Alzheimers is not a new issue and many scandals re. substandard care for sufferers have been reported for years. And it will continue to be reported because, political elections are not won on promises to increase government spending. At least, give us the freedom to choose!
Thanks for a balanced story on a highly complex issue. My mother, who lived with Alzheimer disease (coincidentally in the province of Quebec), died on August 17, 2016, after complications resulting from a preventable fall. I’ve written extensively on the far-less-than-adequate care she received during the last four years of her life; my most recent piece having been posted here: http://myalzheimersstory.com/2017/07/27/one-year-ago-yesterday/
My mother was a fighter who I feel certain would never have opted for assisted dying. However, I believe the sheer numbers of people who will live with Alzheimer disease in the future will force society to allow people who wish to die rather than to live with this disease to have those wishes acted upon in the event they contract the disease.
Our healthcare systems do not have the capacity to deal with people who live with Alzheimer disease and related dementias now, and many languish neglected and abused in long-term “care” facilities that are more like warehouses where care and compassion are both in short supply. The situation is bound to worsen unless drastic change takes place and it simply isn’t happening. As a result, I believe euthanasia will become an imperative not an option. Our overburdened, overwhelmed and broken systems will preclude the luxury of choice.