Expert: Mary Gordon - 4/20/2004

Question
Should family memebers be allowed to terminate medical care for Alzheimer's disease? Why or why not?

Answer
Hi Brian,

You don't give the back story for your wondering about this issue so I'll tell you my experience, and in doing so, will answer your excellent question from my own perspective.

As you probably know, Alzheimers is a terminal illness all by itself - on average, it takes between 3 and 7 years to cause a person's death, although there are people for whom it goes much faster and many for whom it goes much slower. Fast or slow to progress, even a person in perfect health otherwise will eventually be killed by it - and having advancing AD also makes diagnosing and treating any other illness extremely complicated.  

As the disease progresses, the brain damage that has happened means eventually the person can no longer walk, talk, smile, swallow, know who anyone is, or do anything for themselves. They become incontinent, they develop problems eating. They lose muscle, they lose weight no matter how carefully cared for they are. Essentially, they become bedridden since they lose muscular control and can't even sit up unaided.  They sleep all the time and are oblivious to their surroundings.

When it comes to AD, the lucky ones who are those who are mercifully carried away by other illnesses long before Alzheimers wends its way to its final stages  - because the natural end of AD is pretty brutal on everyone, - I recall seeing some of the "living dead" in the nursing home long before my poor mother in law eached that stage and I just couldn't imagine her like that - and yet reach that stage she did, and remained there in the twilight zone for close to two years. Towards the end, the person really is gone in every way that matters - it is like having to have the corpse laid out indefinitely without the closure of a funeral - and it was agony for everyone who loved her and who couldn't bear to see her like that, knowing that her very worst fears had come true.

What happens to family members is that they have to consider might come next and what the options might be. If the person has a major illness such as cancer, would the family want the person treated other than comfort measures (i.e. pain killers). If the person has a heart attack or other sudden emergency, would they want medical staff to try and resuscitate them  -  or let God and nature take their course? If the person left a living will expressing their wishes for palliative care only after a certain point, does the family respect those wishes?

These are things to consider, even if they seem callous. The question becomes - is it kinder to let the person slip away from something like pneumonia, or aggressively treat them and keep them going (which can involve suffering in itself) and then bring them back to their steadily declining existence where they have no quality of life. Do you subject them to painful surgeries and agressive treatments when they can't understand why they hurt, and can't cooperate with therapies and treatments, but are just bewildered and upset - and can't ever really get well again, no matter what is done. There are a lot of moral and religious issues involved for many families - and only individual families can make those decisions, given what they know of their loved one, what the loved one's wishes were and what the person has left in terms of awareness and quality of life.

It is very common in later AD for the person to develop serious problems with eating - they can have big problems chewing and swallowing even soft foods (their muscular coordination goes), or, like my mother in law, they completely loose interest in food (not sure if they have no appetite or just have no idea what food is). They can even start to refuse to eat. This means you have to think about artificial feeding or IVs - or letting nature take its course, which is a very hard thing for most families.

This is a very personal thing - but having been through the deaths of many loved ones, I would never permit a feeding tube unless it was a situation where the person was temporarily impaired and there was hope of real recovery to the point where the tubes would be shortly unnecessary - and this is not the case with end stage Alzheimers.

At some point, despite our desire to fight death, it seems to me there really are worse things than dying. For me, that would be living on in the twilight, caught between two worlds - and really being held here by loved ones who aren't ready to let go. In the case of my mother in law, she had enjoyed a full life. If we could have restored her to health, we would have moved mountains, but it wasn't to be and for us, when she finally began to slide away, the best way to show our love was by standing by her, holding her hand and letting the end of life come. It doesn't have to be frightening. It is a priviledge to be there for them at the end.

There are situations where just because we CAN preserve life, doesn't mean we should - it is a complex decision, but it has to be about what the right thing to do for the individual person and not about our own fears and inability to deal with the end of life. I think you could make someone's time a few weeks or days longer, but at the same time  a kind of hell on earth with a lot of tubes and strangers fussing and machines and noises and painful or frightening iinterventions.

We were fortunate in that my mother in law had written out a living will so we knew what she wanted (no artificial or invasive means to keep her alive, no resuscitation etc.), and we had the support of the doctor, the care facility and our religious counsel, so we were personally at peace with doing what might seem a terrible thing to some people (and something that can create wars within families when there are disagreements about what the right thing to do is). We had an agreement with the nursing home that she was not to be recuscitated, that there would be no tubes, no medications other than what was needed to keep her comfortable. It was gentle loving palliative care. She essentially stopped eating about 6 weeks before she died - she just ate less and less until she stopped despite best efforts. We kept her very comfortable and kept offering her food and drink many, many times a day right to the end (and she continued to refuse, right up to the end). I'm sorry to be so graphic - but it actually was a very gentle death, with my husband holding her hand. She did not seem to be suffering - she just sort of faded away over a period of a couple of weeks. I wonder if what was left of her just decided she had struggled enough and it was time to go.

We truly did regard this stage as the slow but inevitable going out of the tide. My husband (her only child) feels very strongly that the choice was the right one for her and for him - that he did the right thing. He regrets that she had to go through any of it, that she got Alzheimers, that some other illness did not mercifully carry her off prior to the last stages - but he does not regret letting her go.

So - there you go, Yes, there absolutely are times and reasons for no longer continuing "medical care" where that care is aimed at curing the incurable condition of being elderly and dying. Sometimes it takes more courage and grace to say no to the technology, and give the person peaceful, gentle, loving last days - which is also no different than the ends of many of my loved ones with cancer and their minds intact have chosen - hospice care with comfort measures and pain control only.  

Hope this helps. If you have some other aspect of this you want to talk about, let me know.

Mary Gordon
Toronto