Prolonging suffering or enhancing life?

Started by

OK, I'll probably get flamed for introducing this topic, but here goes: Since her dx, Mom has expressed repeatedly that she wishes she could die, which I can understand. Faced with the same circumstances, I might feel the same. We (her family) brought Mom's depression to her MD's attention. Several antidepressants were tried, but side effects (nightmares when she wasn't experiencing sleeplessness) required the meds be discontinued before any real benefit could be realized. (I'm currently looking for a geropsychologist to address this and other related issues.) I've come to understand that depression and dementia tend to go hand-in-hand, especially during the early stages. With her dx of vascular dementia and Alzheimer's, Mom started the Aricept & Namenda combination which supposedly, at least for some, slows the progression of dementia, but only temporarily. OK. (Visualize me cowering and covering my head). My first thought was "Erm, why are we postponing the agony?"

What I've witnessed in Mom so far is social withdrawal to hide her condition, emotional distress, mental suffering, confusion, depression, etc. Things that used to give her pleasure no longer work. The few that do are those that reunite Mom with her past, and I've taken the cue by bringing them to her, as much as I can. But as visits go by, those pleasures more and more are stuck "in the moment." Mom is unable to recall and enjoy the memory of the book, the documentary, the photographs, or the museum. How very, very sad.

At MC Mom is on a low fat, low sugar, low salt diet, which is much healthier than the random snacking she was doing before she was placed in MC; however, she complains heartily that the food at MC is tasteless. For what it's worth, I've tried the food there and found it to be quite good, but I digress. The purpose of this healthy diet is supposedly to limit further advancement of hyperlipidemia, hypertension, and hyperglycemia, which makes sense, since all of these conditions are precursors to dementia. But all of this got me to thinking. I can sort of see the benefit of prolonging the early stages of dementia, but inevitably it's all downhill. (I'm cowering even lower). Why must life be preserved and prolonged regardless of its quality? At what point do we call it quits and allow nature to take our loved ones? Dementia is a horrible fate, a cruel joke I wouldn't wish on anyone. I cannot speak for anyone but myself, but if some incurable suffering became my fate, I would not wish to prolong it, but allow nature to run it's course (with my suffering minimized as much as possible). Please don't misunderstand. I think dementia patients need a healthy diet (as do we all), and by all means, medicine administered to relieve suffering. But I'm having trouble with the concept of prolonging the agony, if only by a few months. There are many sweet aspects to life, as well as suffering. But I see death as a natural progression (yes, progression) of life. Death will hasten me to the arms of my creator where tears and suffering don't exist. But that's just me. Others make think differently, and that's okay.

I introduced this topic for the purpose of discussion, not to impose my ideas on anyone else. Every situation is different. We all have different values and a different outlook. Would welcome thoughts from others.


Here in Oregon we were the first to allow the Death with Dignity concept to become legal. Personally, I do not agree that suicide is an acceptable choice EXCEPT when it comes the the concept behind DWD - the laws and rules that govern this act are good safeguards to ensure DWD is not a random decision made without much thought and preparation.

I have come to believe that the current DWD qualifiers fall short however - that some room needs to be made for those suffering from dementia. 

I have thought about it a lot and wonder if something by way of an advanced directive could serve the purpose. When an AD is made the person must be competent. So - before a diagnosis of dementia occurs couldn't something be included that would allow for DWD when an advanced level of dementia is reached - perhaps including the same type of qualifiers needed for hospice?

In the last six months of my mothers life she stopped talking - stopped doing anything pretty much besides sleeping and going to the bathroom in her adult diaper. Mom even stopped eating and the first cause of death on her death certificate was "malnutrition" followed by dementia. Basically, my mother starved to death - her AD would not allow a feeding tube - which I wouldn't want either, but starving to death because you've forgotten how to eat?  What a horribly heinous way to go. 

If my mother could have foreseen her quality of life - or rather lack of - was at the end, I have no doubt that if it had been an option to utilize DWD -  based on a dementia diagnosis AND two doctors stating she had six months or less to live - mom would have gladly included DWD in her advanced directive. 

But I guess then the issue becomes who is going to give the fatal dose ?  But really - how is that different from switching off the ventilator?

Thanks for your response. The concept of assisted suicide is one I can't support. Seems to me assisted suicide becomes a slippery slope of no return; however, I wasn't aware of Oregon's DWD and out of curiosity, I'll take a look to see what it entails. My thoughts turn more toward allowing a natural death; i.e. treating Alzheimer's and other forms of dementia like the terminal diseases they are, and like cancer forgoing "treatment" like some choose to do in favor of allowing the progression. Granted, no one forced the family to go with Aricept and Namenda for Mom; I just question the purpose; sort of like buying a few more months of life with dementia. Again, I don't judge anyone who supports these medications, just questioning the rationale. After all, my family went with the MD's recommendation for these drugs and barring any serious side effects will probably continue with them; however, dementia and its conventional treatment made me think about things I hadn't before.
One thing you said, Amber, that I'll bet no one will disagree with is that dementia is " very, very sad."

I'll disagree with one notion. Aricept and Namenda (and any other drug) DO NOT slow the progression or extend the life cycle. I know that was the big hype and hope when they first came out, but the evidence now is that we currently have no way to slow the inexorable progression of the disease. That is one of the current focuses of research. I recently heard this in a lecture by two researchers. I also read of a study in GB several years ago that compared a large group of people with ALZ who took Aricept with a control group that got a placebo. There was no statistical difference in when people in the two groups required institutional care.

But some drugs help some people function and feel better. If your loved one is one of those lucky people, it is certainly worth using the drug. If the drug doesn't seem to improve anything, there is no point in taking it for future benefit -- ain't gonna happen.

My husband responded exceptionally well to nearly all the meds he tried. Aricept continued to help him throughout his entire journey with Lewy Body Dementia. That was confirmed when we dropped it during hospice and had to add it back in.

So we cannot prolong the mild period with any drug, but we can mitigate the suffering in various ways throughout the course of the disease. And I'm with you -- mitigating the suffering should be the focus of care and treatment.
From my reading Aricept and Namenda are not going to extend the life of people with dementia, rather they are hopefully able to slow memory loss and can be helpful with some of the confusion and behavioural symptoms that reduce Quality Of Life. Some people feel they are a miracle, some think they do nothing, others suffer side effects and are worse off when they take them, the only way to know how someone will react is to give them a reasonable trial period, then reevaluate their effectiveness periodically.
Mom doesn't like taking meds and lived a long time before even needing BP pills

When her neurologist asked my goals it was simply to help calm her anxiety without making her a zombie

We chose one antipsychotic drug and when it wasn't working we switched to another . - she's nearly 94 so our goals might have been different if dementia struck when she was younger

The decisions yet to come may be more challenging and I hope she doesn't have to suffer at the end
My husband, Coy, had a very strong family history of heart disease. For all the years we were married he was on a heart-healthy diet, exercised, and saw a cardiologist regularly. He had a pacemaker and a defibrillator.

He had already lived to a greater age than any of his brothers, a sister, and his father when he developed dementia. It took me a while to switch gears from "fixing, preventing, curing" mode. When I sorted out that my caregiving goal was maintaining the best quality of life possible in the circumstances many decisions became easier and plans fell into place.

Coy was very adamant that he did not want "extraordinary" measures used. Twice a feeding tube was recommended. Twice he refused it. He tried out a "nectar" thick diet. He got so depressed he decided he'd rather take his chances with choking and even dying than continue on that diet. So we dropped it. He also had CHF. He weighed daily on a scale hooked up to a phone. A nurse kept track of results. Here is a sample of my conversations with her:
Nurse: Coy is up 3 pounds from yesterday!
Me: Oh that was probably the pickle he had at a German restaurant yesterday.
Nurse: A pickle! Don't you know how much salt is in a pickle? He is supposed to be on a low-salt diet.
Me: No ma'am, he is on a eat-for-pleasure diet. His LBD is a fatal disease. He is not going to survive it no matter what he eats. I'm certainly not going to deprive him of a good pickle now and then. It is good to track his weight and see when some adjustments might be needed. But I haven't agreed to keep him on a low-salt diet.

Fortunately Coy's main doctors were on the same page we were on. But I had many conversations with other care providers that were similar to the one with the nurse.

And if I am ever in a care center and someone tries to put me on a low fat, low sugar, low salt diet, and I can't defend myself then, I solemnly swear I'll come back and haunt that person at every meal!

Mom has gained 20+ pounds since her move to
Memory care 16 mos ago

Some of the weight gain is due to her limited mobility now and some due to the risperdal and quite a bit due to the doling out of ice cream cookies and dessert 2x a day so I asked them to cut back on the treats

The nurse replied do you really want to deprive her? I don't but I also want to keep her able to stand and transfer as long as possible too which is becoming more difficult each week
MsMadge, that is a tough one, isn't it? Being able to continue to transfer herself would be good for the quality of her life. And eating treats with everyone else adds to the quality of her life. Which one is more important?

Is the increasing difficulty with transferring due to her weight?

Is she continuing to gain, or has she plateaued at this increased weight?
Ms. Madge, at the nursing home my Mom was at they plied my Mom with cookies, cake, you name it. They just wanted her to eat.............something, anything. Towards the end, nothing appealed to her. She used to say she didn't want to hurt their feelings by not eating these things but when we cleared her room out after she died there were cookies stuffed in drawers, you name it. I suspect one of the main contributing factors towards my Mom's death was malnutrition.

As far as prolonging life or right to die .............this topic is always such a slippery slope isn't it? Part of the Hippocratic oath is "do no harm" So, in that case as long as your parent or other loved ones are under a doctor's care they legally have to continue to take measures to keep your loved one alive. Even, if the prognosis is eventual death.
As far as these drugs they prescribe to relieve symptoms of dementia, they are probably partially to make it easier for the caregiver to handle taking care of said loved ones I suspect. I imagine if you were to just let the dementia/alzheimer's go totally untreated the patient would be even more of a handful to take care of. My Mom was on none of these types of drugs so this is just speculation on my part.

I believe in the future, hopefully, we will all have more of a say in how we want our lives to end. In the meantime, especially as long as there are idiots like Trump in power, God help us all.
Two of our encounters with health care providers might be worth mentioning. The first recommendation for a feeding tube came after treatment in hospital for bleeding ulcer. The very young speech pathologist told us the results of a swallowing test and told us about the feeding tube. She listened to my husband's objections and tried to overcome them. Then she left to update her report to reflect she talked to us about the option and we turned it down. When she came back she had tears in her eyes. "I wish my grandfather had turned down the feeding tube!"

The other was a cardiologist who was absolutely stunned that Coy wanted his defibrillator removed. He was DNR and he felt that is what that device did -- try to revive you. Doc really tried to talk him out of it. Finally he agreed that when the chest had to be opened to change batteries in a few months, he would turn off/remove the device and leave only the pacemaker, if that is still what Coy wanted. It was. When the doctor came out to talk to me after the surgery, he said, "I've been thinking a lot about what Coy wanted. I think he made the right decision."

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support