FREE NEWSLETTER
LIKE OTHER FOLLOWERS of HumbleDollar, I look forward to Jonathan’s Saturday articles. I have to admit that my interest has been heightened by his cancer diagnosis. Not many folks would have the courage to write about what’s going through their mind when they’re fighting for their life. We don’t often get this kind of insight into someone’s life.
Jonathan has probably received a lot of advice about treatment plans and the doctors he should see. I’m sure most of it is out of love and respect for him. I’m not going to offer an opinion on how he should deal with his illness. But I do have one piece of advice: Make sure you have a power of attorney for health care, not just for your own sake, but also for the sake of loved ones. Why is that so important? We don’t know how our life is going to end and how it’s going to affect those around us.
Unfortunately, most of us are so focused on the financial aspect of retirement that a health-care power of attorney is often overlooked. I didn’t realize how important it was until my father started his cancer treatment.
He battled cancer for almost three years. His journey had a profound effect not only on him, but also on our family. After my father started chemotherapy, we noticed his behavior changed. He would easily get angry and rattled. We had to take his car keys away because we feared he’d experience road rage.
My mother would sometimes phone, and ask if I’d come over and see if I could calm him down. He’d get verbally abusive. My dad would tell my mom that he didn’t need her, and that she should leave and not come back. I started spending more time at my parents’ home, because there were times when my mother didn’t want to be alone with my father. This was not the father I’d known.
We told the doctor about my dad’s volatile temper, but he didn’t take us seriously and thought we were overreacting. He even made light of it. “Oh, you’re asking for a happy pill.” Then, one day, I told the doctor that we’d removed my father’s gun from the house because we were afraid of what he might do when he got angry. The doctor finally prescribed medication, but it didn’t help.
Meanwhile, the doctor became increasingly difficult to work with and showed little sympathy. During his medical training, he must have skipped the class on bedside manner. My mother and I would catch hell not only from my father’s outbursts at home, but also from his doctor during office visits.
One day, we told the doctor that my father was complaining about his back bothering him. After examining him, he saw he had shingles. The doctor started berating my mother, telling her she needed to do a better job taking care of her husband. The problem was, my father wasn’t a good patient. He wouldn’t let us touch him.
We tried changing doctors. But two doctors we contacted wouldn’t take him. The third one, we felt, was located too far away. Also, my dad didn’t want to leave his current doctor, so we stayed.
Finally, the doctor told us he couldn’t cure my father, but he could try to extend his life if we wanted to continue treatment. If it was left up to me, I would have said no. My dad’s quality of life was already poor, and I was concerned about my mother’s well-being. But it wasn’t up to me.
The only one who could stop treatment was my mother. She had power of attorney over my father’s health care and it was her decision to make, because my dad couldn’t fully comprehend what was going on.
My mother wanted to continue. She wasn’t ready to let go of him. The doctor prescribed an expensive drug that wasn’t covered under my father’s prescription drug plan. Luckily, because my parents’ income was low, we were able to get financial help from a charitable organization.
Unfortunately, the drug caused my dad to become incontinent. My mother decided it was time to stop treatment and my father entered hospice care.
A few weeks later, we received a letter from my father’s doctor. He was informing all his patients he was closing his office. We heard his practice was in financial trouble because of some bad business decisions. Maybe that’s why he treated us the way he did.
During hospice care, the softer side of my father started to reappear. He was no longer the angry person that he’d been during his treatment. The drugs he was given must have worked their way out of his system.
During my father’s ordeal, I learned that you have to take into consideration how your treatment for a life-threatening illness is affecting the loved ones who are taking care of you. When there’s no hope for survival and my quality of life is poor, I don’t want to burden my wife. I hope that I’m of sound mind and that I’ll know when it’s time for me to go. If not, I want my wife—who holds my power of attorney for health care—to step in and make that decision for me.
Dennis Friedman retired from Boeing Satellite Systems after a 30-year career in manufacturing. Born in Ohio, Dennis is a California transplant with a bachelor’s degree in history and an MBA. A self-described “humble investor,” he likes reading historical novels and about personal finance. Follow Dennis on X @DMFrie and check out his earlier articles.
Want to receive our weekly newsletter? Sign up now. How about our daily alert about the site's latest posts? Join the list.
Both my wife and I have executed living wills that gives the other the ability to decide when its time for pallative care only. In California, it is also possible to lodge a copy of your living will with the state that will allow health care providers to access a copy of this document if needed.
What we have specifically rejected executing is a DNR (Do Not Resuscitate), which potentially gives a health care provider the authority to end care in the absence of an authorized power holder. It was our feeling that it should be a family member, or other designate, who would make this decision and not our doctor.
When you say “living will”, do you mean an “advance health care directive”? It appears that in California this combines a living will and a health care Power of Attorney. In most states you need a separate POA to implement the living will.
A DNR – Do Not Resuscitate – does not authorize the end of care in the sense of removing a feeding tube. It means that if your heart stops no measures will be taken to attempt to revive you. You might want to read up on those measures and their likely after effects before deciding you don’t want a DNR. (See here for California.) It is much more likely that medical professionals will try to keep you alive than assist you in dying.
Thank you Dennis. I am sorry you had such a tough time with you dad and the doctor.
My father died in 1990 of cancer and my mother in 2012 of old age. The death certificate said she was failing to thrive. She was in good health and good mind at age 89 but fell down a bank at her house. She had no obvious major injuries but went steadily downhill after that.
It is sad to lose our parents, but me and my two sisters were blessed there were no major issues, and they died peacefully. I was DPOA for my mother. Her estate was very small and simple to process. Mother’s SNF asked if we wanted a feeding tube for our mother. Our initial thought was yes. However, an RN friend who worked in a SNF advised us that patients do not suffer because of the lack of a feeding tube, so we changed our mind about that.
My wife and I have DPOAs for each other and our 2 children, Health POAs and Health Directives stating our wishes for different health scenarios.
My wife does not understand our finances very well, even though I have documented everything and shared with her. She may not realize it if I start doing crazy things in our finances. I have considered having both of our children copied whenever I make trades, withdrawals or other transactions. I already give them copies of everything at year end, so hopefully they would know to question my activities.
One of my fears is that I may be the last to know that I am losing my cognitive abilities.
Unfortunately, end of life care in the US is terrible. On the business side cancer centers rely on infusions to fund them and (so called) insurance companies battle to not pay for the drugs. You might reasonably conclude that the system is built to drain retirement accounts.
More importantly, there is no right to die (in the US generally, maybe a few states are more lenient). People who feel they’ve had enough have no legal way to transition, pass, die in most cases, regardless of withdrawing care based in healthcare proxies. Helping them would be criminal. Many providers won’t honor advance directives to avoid liability or because they disagree. This coercively extends suffering and expense.
Sadly true. One slight improvement in the US – I’ve heard that Vermont now allows non-residents to take advantage of its Right to Die law, but this only covers some, terminal, diagnoses. Dignitas in Switzerland is still the only option for many people, and that isn’t easy.
Thanks for the article. Just went thru the passing of a friend who had one person POA for heath care and another person POA for finance. They did not communicate well and it would have been much better if the same person would have been both health care and finance. Your case of having a disruptive family member is something I seem to see more that before. Someone could do a huge study on options. Once the individual passes the POAs go away and you need to have a trust and other stuff in place. It is a lot more complicated than it needs to be. Thank you again for the article.
I’d like to echo to please tell someone what your wishes are! Near the end you may not be in a position to do so or may have family members who can’t/won’t fulfil them due to their own emotional pain. Here are 2 situations that happened in my family. Neither had anything in writing
1) My father had been part of the Hemlock Society for years (polio and then post polio syndrome where you lose all the function you gain back). He sat us down to talk about it about 2 years before he died (we, as young adult kids, did not want to hear about that as it was emotionally really hard – he died 28 years ago). But when he was bed bound with respirator assisted breathing, in a nursing home and with 2 major infections (one was pneumonia) that were antibiotic resistant and he’d eventually die from he finally was ready to die. I finally, as I saw him deteriorate, asked him if he was ready to die (he had trouble talking and mostly had to write out what he wanted) and he said yes. He chose to died 8 days later. Had he not let us know what his wishes were, even though we didn’t want die and this caused us a lot of emotional pain, he would have suffered who knows how much longer as he was not going to get any better and only get worse. We were already grieving in advance, nothing stops the grief regardless of how you die, but it helps to know that you had the kind of death you wanted and aren’t suffering anymore even as we are in pain over your death – pain we’d have whenever you died.
2) One of my aunts (dad’s sister) had ovarian cancer that came back and spread. She talked with me about her last wishes when I saw her 5 months before she died (she said she talked to me because of dad’s means of death and because I’ve had 3 cancers, 1 with no cure a longer life span so I’d understand without getting upset – regardless I found it upsetting but didn’t let her know) but told me not to tell her kids (she didn’t want to upset them – umm they are already upset). I told her she needed to tell her doctor as well as her kids because if no one knew but me her wishes may well not be followed. It turns out she didn’t tell anyone. When I got the call from my cousin that my aunt was dying (she stopped treatment) I asked if she was at home and was told no. I told her what my aunt had told me (she was no longer really able to tell he wishes at this point). Her daughter was really upset her mom hadn’t told her her wishes and I tried to help her understand why she didn’t. She was brought home about 8 hours later and died 2.5 days later. Don’t upset your family by only telling someone else who, when they let you know your wishes, then your family is additionally upset you didn’t let them know (of course there are reasons why you might not tell a young child in advance, etc. but I am speaking here in general).
My aunt and dad took two different approaches and one almost didn’t have the outcome she wanted. It’s a good thing dad had told all of us as when I asked he was relieved as he didn’t want to have mom ask because of the pain he felt it would cause her and didn’t want to upset us by asking himself or asking one of us to ask… so he was relieved I asked him if he was ready to die and then contacted the doctor to let him know so the two of them could “talk”..
As a result realize that even if someone knows your wishes you may well still need to take the initiative if one of your love ones will not/can not act if you have nothing in writing (neither my dad nor his sister did). You will not upset us – we are already upset. When we know your wishes in advance it is less of a shock when you stop treatment, pull breathing tubes, whatever and we have had some time to grieve in advance and prepare ourselves (although nothing will stop the grief when you actually die). When you are at this point we are not taken by surprise you are going to stop treatment, commit assisted suicide, whatever. We are sort of prepared. As much as we don’t want you to die we don’t want you to live like this either. As much as we are in emotional pain about your impending death we know what your wishes are and can act (or someone can act if you put this in writing) if you can’t.
I’m so sorry for your experience with your father. Thank you for the article. A Health Care POA is very important, but it’s not the only thing you need, and careful thought should go into choosing the holder and communicating that choice to others. Some points to consider:
— Have you fully discussed your wishes with your POA, and with any close family members who might feel they should be involved? Is your POA capable of saying no when needed, and sticking to it?
— Do you also have a Living Will/Advance Directive? This will specify what treatment you do or do not want in certain circumstances. If you were in a coma would you want a feeding tube? Intubation? Antibiotics? I was very glad of antibiotics when I had pneumonia in my 60s, I suspect I would feel differently in my 90s.
— Do you have an official, signed, Do Not Resuscitate order, if that is what you would want? Where is it?
— Have you discussed your end of life wishes with your doctor(s)? I left my long-time PCP when it became clear that we did not see eye to eye on this issue. I recently switched to the on-site clinic at my retirement community (CCRC), which is staffed with gerontologists, but only after confirming that they would honor my DNR. I had also confirmed that with the CCRC before committing to move in.
— If you have a serious or terminal illness, have you discussed the trade-offs of treatment with your doctor(s)? More treatment may not always be the best option, depending on your personal definition of “best”.
— If you are elderly and frail, or have a terminal diagnosis, you might look into POLST/POST/MOST – similar to a Living Will but potentially having more force.
A good way to organize your wishes for care is
https://fivewishes.org. Each state has it’s own requirements and this website is a big help.
Kathy,
Thank you for the thoughtful list. It’s very helpful.
And, Kathy, let’s not forget your excellent article on the topic:
https://humbledollar.com/2023/04/planning-my-exit/
Thanks, Jonathan. Not a fun topic, I’m afraid, but well to take precautions. I just signed up for a discussion group based on “The Art of Dying Well”.
Dennis – this must have been a hard article to write. Dealing with a difficult, dying patient AND a difficult doctor must have been terribly stressful. Your message is loud and clear. A medical POA is important, but so is the thought process of the person with that permission.
Thank you for this piece Dennis. After my dad passed, I had the durable POA for my mom. My brother, who lived closer, had the medical POA. It was helpful that my parents’ documents made clear who had POA when a spouse passed before the other.
Thanks, Dennis, for the excellent advice about having a health care POA. It must have been difficult to revisit the details of your dad’s final illness. Many of us can relate to what sounds like a very callous doctor. Fortunately, they seem to be more the exception than the rule in my experience (except for when I worked at a renowned cancer hospital – but someone already wrote a play about that place that said it all).
Thank you, Dennis. This was timely b/c we just got back from seeing our parents and Spouse’s brother with ALS. What you said in your article we are also experiencing with brother and his wife. It is heartbreaking to watch. They had done nothing about estate planning until this past Sept when he almost died. She is taking care of him at home. He is bedridden with a feeding tube and vent. Chris.
Dennis, thanks for a thoughtful article on a very challenging topic. We lived much of this when my Mom had cancer. She lived with my wife and me at the time. When it became apparent that there was little left to do, she was concerned that her care was becoming too much for us. Despite her illness she was still able to have rational discussions with us. More importantly, she had previous discussions with us (my wife mostly) about her wishes should she become incapacitated. We had help from hospice and family and friends, and she was able to stay at home till the end surrounded by those she loved.
We all have stories. This one was touching as usual. Thanks for sharing.