I’ve been thinking about revising my Health Care Proxy or Health Care Directive and would love to get your thoughts. In addition to adjusting my agent, I have been thinking about the conditions under which I wouldn’t want to be resuscitated or kept alive. I have seen a few people who have lost their mental functioning but are physically alive/kept alive with a tremendous drain on their families time, energy and money. If I am not aware of what’s going on, I’d prefer not to be around.
I also would prefer not to be around if I am unable to communicate. I have a claustrophobic streak and the thought of being trapped in my body and unable to communicate actually wakes me up in the middle of the night.
One can be temporarily incommunicado (my father had a stroke and it was not clear for a little while whether he knew what was going on or whether he would recover his ability to communicate). My mother became paralyzed and it was took a little while for the docs to realize that she had Guillane-Barre syndrome and would recover. So, one needs to set some minimum time limit before deciding that the condition is permanent.
Massachusetts where I live allows for DNRs but does not allow patients to choose medically assisted death (not sure what to call this). Ontario does (my MIL’s partner who was a physician chose this) as do a number of states like Vermont. But, I think one would need to establish residency over a minimum of six months to be eligible. For me, this would be an option in either of the two conditions I described – mentally there but unable to communicate or physically there but mentally vacant.
How do you guys think about these kinds of issues in HCPs? The boilerplate HCPs do not address these issues meaningfully as far as I can see.
I also would love to think about how we help our kids feel empowered to step in if mental faculties gradually begin to decline. This was not a real issue for my father or FIL because they died relatively quickly. And my mom remained mentally very acute except for short-term memory and a heightened anxiety about finances and gave up her car keys without being asked at age 90. My MIL on the other hand is fiercely independent and we are all treating her as if she were a fully mentally functioning adult when in fact she is not. Her decision-making fluctuates but can be really off and some of her choices are ill-advised. I have taken over bill-paying and investments for her but she resisted this for a couple of years after it should have happened.
More generally, the question I’m facing is whether and how to address the likely decline in mental acuity in the HCP.
In my experience as a doctor, people spend too much time thinking about uncommon scenarios and not enough time talking to their eventual decision makers (usually their kids.)
The final scenarios are almost never what people address in their advanced directives e.g. “being kept alive by a machine” or locked-in syndrome. The real dilemmas are more like this: Dad keeps getting pneumonia because he aspirates because he can’t swallow normally anymore since his stroke. Or Mom lives in memory care and 3 times in the last year she’s been hospitalized for urosepsis (UTI that went to her blood) and these hospitalizations are absolutely miserable for her because she gets delirious and she falls out of bed, and on and on.
So I’ve talked to my kids at length. They know that if I’m old, weak and my memory is going that I want to be comfort care only. No hospitalizations, no antibiotics. Pneumonia is sometimes called Old Man’s Friend. My kids joke it’s a #LifeGoal of mine to die of an infection, and it’s their job to make sure I’m not blocked from attaining my goal.
It is such a hard area to figure out - I will be following the discussion.
I think I’d rather my family err on the side of “a little too early” than “too late.” Not really time-wise, but condition-wise. I don’t know what to call it, but if it’s not looking good for me, and I’m going to be a huge burden, then I’m very OK with having “the plug pulled.” I have told the kids “do what makes sense,” NOT what will keep me alive.
I so agree with you, and had to make a decision for my mom, at only 70 YO. She had severe dementia and no quality of life, but they were of course willing to take extreme measures. I asked the doctor what she would do if it were her mom. She initially said something like they do whatever the family requests. I said “but what would you do if it were your mom?” She said “I would let her go.”
I was so appreciative of that doctor, and after consultation with some other close family members, that’s what I did.
I suggest not using that framing with decision-makers. It puts them in a position that can’t help but make them feel guilty, i.e. having to decide that they now regard their beloved mother as “a burden” and therefore it’s time to pull the plug.
A way to frame it that is not about THEM but rather about YOU is that you value your independence, and that when your independence is gone you are ready to die. And then specify what to you would be an indication that your independence is gone.
These issues have been on my mind for the past few months since getting my diagnosis. I’ve had a number of frank conversations with the kids, they understand my wishes and I think the process will be made easier in as much as their wishes (for themselves) are similar. I’ve looked into this Medical Assistance in Dying (MAID). Massachusetts is currently considering a bill to legalize it and non state residents can get assistance in Vermont. I thought this article from the NY Times was very interesting.
Medically assisted dying is not generally useful in cases where you’ve lost cognitive functioning because typically the person has to be able to make the decision rationally themselves.
I agree. A few years ago I read a book about a couple that went to Germany to a place the enabled assisted dying. The challenge was he had to make the decision and do it while still having full cognitive control.
@Shawbridge I trust the two kids I put in as proxies. We have talked and they get the general idea. I agree that we really cannot predict what situations we will actually face.
My mother had a totally blocked colon. Her tummy blue up, nasogastric tube that was torture, more detalis I won’t go into. I was alone deciding on surgery or not. I called her PCP, the GI nurse, hospice, anyone I could talk it through with. I called hospice and they came to get her, but said they would have to do some surgery because intestinal blockage is not a good way to die. So I figured might as well do the surgery and colostomy. She lived 5 more years. Yes with dementia.
Which brings me to another point. Having dealt with a parent with dementia for many years, just want to say there is a movement to honor the dignity and even life potential for those with dementia. There are “dementia cafes” for the person with dementia and a caregiver. I was in a support group with both. There are training programs for towns. There are new models of assisted living/memory care that target the needs of this population: some even have the clients set the table or garden as long as they are able.
If you had seen my mother, you would think maybe her life was not worth living. But she lay in bed and exclaimed “the blue sky is so beautiful…and the trees.” Yes she was still verbal (not Alzheimer’s). I think that for ourselves and those we love, we need to be careful how we define a life worth living, quality of life. I have discussed this with my kids too.
I don’t want to be a burden but it is a balance, because there can be a lot of burden on proxies (wondering if it was right, guilt, regret) in making the decision I initially made, to call hospice- if it is not yet absolutely necessary. I am grateful that I went for the surgery.
Again, make sure you trust your proxies and they “get it,” whatever “it” is for you.
Massachusetts has MOLST (Medical Orders for Life-Sustaining Treatments). You and your doctor could decide how you want to be treated in that situation. It is more detailed than just DNR or DNI.
My mom had some dementia (no short term memory) but still smiled and knew the names of all her kids and grand kids and everyone’s spouses. She was happy except for the pain of terminal cancer and a fistula. My brother was her medical POA and insisted everything be done to prolong her life — including medical transport to hospital, transfusions and more, and was reluctant to give her adequate pain relief. It was very difficult for her and all of us.
Very helpful thoughts here. I agree that one can’t predict the path things will take. In both of my parents’ cases, they experienced a problem (stroke, Guillane-Barre syndrome) that left them unable to communicate for a while (shorter for the GBS). My dad then died of something unrelated a year later while my mom lived from age 78 with GBS to almost 98.
Thanks @onetogo2, I have asked a politically connected friend if there was a chance that legislation would pass and he’s asked a state rep so I’ll let you know. With no background info, I’m skeptical.
@my3girls, you’ve identified a big problem with one of the two areas of concern: medically assisted dying will not be allowed if one has lost cognitive functioning. Not sure how to deal with that.
@compmom, I figure that I would let me Family Nurse Practitioner daughter be the Medical Agent. She is very medically knowledgeable – more so in some dimensions that my concierge doc and her employer has recognized this as at age 31, she is the medical supervisor two clinics that employs doctors, NPs and PAs, most of whom are older than she is. I have been talking with her. But, as @fiftyfifty1 suggests, thoughtful conversations with the medical agents is probably the most important step. And @fiftyfifty1, I like your framing that it is about me and not the medical agents. But, I have to make sure the document gives them the leeway to make the decisions I’d like the agents to make.
@Shawbridge I believe the agents have some discretion in interpretation of the MOLST or whatever other document you sign. You can certainly prevent CPR from being done, but you can leave leeway on artificial feeding, and respiration. Decisions for my mother were not guided by the MOLST. I had to make decisions as the proxy. She was DNR and that was the main thing that was achieved on paper.
Curious what folks think about my comments on dementia and quality of life. @Shawbridge are you sure that inability to communicate is your red line? I had a friend with progressive MS who stayed alive long after he could no longer talk. Though he did have a technologically advanced way to get his thoughts out.
@compmom, Getting thoughts out is communicating. If I could use a tablet or some kind of neural link, that would not qualify as not being able to communicate. Within that, I am sure there is nuance. I don’t think I would want to be around if I could only communicate by blinking my eyelids.
I understand your situation. I recommend supplementing your Health Care Proxy with details in the Advance Directive, which clearly describe the conditions under which you do not want to be artificially supported in life - for example, if you lose the ability to communicate or understand, taking into account a certain time for evaluation
When we had a soulful discussion with my lung doc in CA about end of life care and decisions, my lung doc said because I bounce back so well (even when I’m doing pretty awfully), she would NOT want me to fill out any end of life forms at this time. She would want me to discuss with my loved ones and medical POA about what quality of life I want and have them work with her as to whether that’s possible and how long to try. We found that very helpful.
H and I had been ready to complete POLST and other forms with my lung doc but she said that I am a testament to resiliency and its best to have those discussions with treating MD when my medical POAs understand my desires.
I think I’m happy people haven’t judged me negatively for making a decision after consulting the most important people in her life and doing what I think she would have preferred. I think there is no “right” or “one size fits all” answer. You do the best you can at the time, using common sense, your gut, your emotions, opinions from others close to the person, and move on as best you can.
