QoL and personal decision-making - Advanced Prostate...

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QoL and personal decision-making

maggiedrum profile image
31 Replies

I came across this article, which was published in a general interest magazine, written by a noted researcher in Medical Ethics who is also a long time practicing oncologist. The title given to the article was the publication's and the author made pains in an interview to say it is somewhat misleading as to his intent.

This well-known doctor and professor is not close to the age of 75 which he has decided is the age at which he will not take any extraordinary measures to extend his life. He will get medical care for things like fractures and pain but will not get heart surgery or chemo or .....

He is not suggesting in any form or fashion that anyone else should follow his philosophy about QoL and therapy. He just describes how and why he came to the decisions he has. I found the article to be germane to PCa as a potentially terminal disease, for which QoL is an essential factor in how they make treatment decisions.

theatlantic.com/magazine/ar...

31 Replies
Tall_Allen profile image
Tall_Allen

Projecting who we will be and what decisions we will make in a hypothetical future is a fool's errand. I have sat with (too) many on their deathbed who wanted some extra time. Also, you are posting on an advanced PCa forum. Many don't get the choice beween QOL and length of life for the reason that the same drugs that increase one also increase the other (e.g., chemo, radiopharmaceuticals, hormonal therapies). I think few would want the pain, crippling and suffering of living with metastases, even for a short time.

ARIES29 profile image
ARIES29

Interesting reading, but he is 57 now so one wonders would his ideas be the same at age 75?

spw1 profile image
spw1 in reply to ARIES29

That is what I was thinking and also if he were facing the same kind of life as my husband has at the moment. But to each their own. We will take even stability of disease at the moment.

EdBacon profile image
EdBacon

Thanks for posting this. I just saw it and listened to a short interview with the doctor. He gives another point of view to consider, declining QOL with age in general and questions intervention as the default in older people. As I move toward the end of my own life, I see the QOL diminishing and really wonder a lot times if it's worth it. This is why I support Death with Dignity. There are also organizations in Switzerland if your state or country doesn't allow it. But it's a very individual thing and I don't think anyone can look that far down the road and say how they will feel about this in 10 or 20 years, too many variables between now and then.

youtube.com/watch?v=TgrO4rr...

smurtaw profile image
smurtaw

We're all different. I think I am closer to the author's views than others who value quantity of life over quality. I respect men with both goals.

When I was diagnosed, Mayo gave me 0% to avoid RT and chemo and hospitalization for more than 3 months. And only a 25% chance to live 5 years.

My first goal was the 5 years so I could wrap up my affairs. When it became apparent that I would live longer, my goal was 2035. Now, my goal is still 2035. My wife wants me to shoot for 2053 and my MO thinks that I will not die of cancer. But to date, I have not changed my goal. Will I change it when 2035 approaches? Possibly, but I hope that it depends on my health and energy rather than fear. When I was on Xtandi I didn't feel good and the only reasons I stuck around were because of my son and my wife. ADT was the same for me. It controlled my cancer but didn't give me the QoL that I desired. So I started high T. During my first injection, I thought that I would likely be dead in 3 months. The deciding factor for me was that it might be a good 3 months. As it turned out, I went 2 years before my PSA started creeping up. Then I switched to BAT and my PSA dropped precipitously. BAT is working for me but I can sincerely state that cancer control is the icing on the cake. My primary motive was to be a good strong energetic role model for my son.

awb1 profile image
awb1 in reply to smurtaw

Thank you for sharing, I can compare notes with you. I was diagnosed 18 1/2 years at age 50 and the Uro suggested 5 years. A few years later an a-hole Onc said 5 years lucky but I would be in his infusion chair "a lot". I fired him. 10 years later, I too am on BAT and feel fabulous. I have a highly trusted relationship with my Onc, as a 2nd consulting Onc said to me, "the patient is self-directed". We all have to be self-directed to a degree, the only way to live longer with good QOL. I'm aiming for 75 with good QOL.

smurtaw profile image
smurtaw in reply to awb1

Glad you fired the idiot. I fired my first MO and urologist. Same stupid comments. What good does kicking someone when they are down do anyway? Make them feel good by "saving" the day? My current MO is NOT insensitive. And she is NOT an idiot. She is a very smart doctor and I admire her and greatly respect her opinion. When I was on SPT her opinion was continue. Now that I am on BAT, her opinion is continue. She assists while I guide my therapies and is willing to step in if things go south.

Scout4answers profile image
Scout4answers in reply to awb1

Awb

I would be interested in hearing your BAT protocol. and your experience with it.

CountryJoe profile image
CountryJoe

Fascinating, but it doesn't let you read the artcle.

Cancer2x profile image
Cancer2x

Damn! I hit 75 last year! Am I supposed to check out? I’ll pass thanks.

Just getting into Olympic Recurve and Barebow Archery. Gotta get good at those first. Then maybe, if it turns out that I really am not that good.

No - wait! Also want to train for a winter Biathlon! Shoot great, but need practice with X-country skiing!

Yeah….and I shoot on a very high-level Steel Tip Dart team. Would miss the team beers in the bars.

And then there’s Bowling. I hold a USBC coaching certificate. The kids/adults I coach would miss me! Plus, I just like competing.

I also teach Fly Casting/Fishing with multiple organizations. Gotta give them time to plan before I check out!

I think this doctor, whoever he is, is a coward, unable to see himself involved in life after age 75.

Each of us will be making end-of-life decisions eventually. But deciding that now, hopefully well in advance, seems REALLY premature!

Excuse me - gotta go now and make a finger sling for my Olympic bow!

Shamrock46 profile image
Shamrock46 in reply to Cancer2x

I see many sides to this. On a site for PC cancer wives/caregivers I read yesterday about 2 women who have been consumed with medical bills to the point that they're both about to lose their homes. For some their decisions might also have something to do with finances. I hope someday our elected leaders will find the right fix for insurance/health care so decisions like this don't have to be made.

Cancer2x profile image
Cancer2x in reply to Shamrock46

I totally agree that healthcare finances should somehow be reworked. Sadly, too much money is involved to get real meaningful change.

But deciding at 57 to wish to die at 75 because of possible financial or other impacts sounds more like this guy is flogging a book deal. I would trust him as my doctor about as far as I can throw a grand piano!

The quality/quantity is a conundrum we will all eventually face. But to decide the outcome decades in advance - doctor or not - seems to be the product of irrational fears and faulty thinking.

Shamrock46 profile image
Shamrock46 in reply to Cancer2x

Whether his fear is rational or not, it may be real to him. We can only hope that in the ensuing years he finds someone or something that brings enough joy to overcome it and embrace living once again. As you said, in almost 20 years much could change...he might even get struck by lightning!

maggiedrum profile image
maggiedrum in reply to Cancer2x

You may decide to go back and reread the article. The author specifically notes that he may well change his mind about the age as well as everything else he discusses for decision making. I expected many responders would assume that he had set 75 as his drop dead age. He does not.

London441 profile image
London441

Younger people like to pretend they will basically die on their own schedule, it’s quite common and for most indeed a fool’s errand. I like what a doctor said in the movie ‘End Game’.-that everyone is pretty accepting and philosophical about dying until it’s them.

maley2711 profile image
maley2711

I see that the aricle was writen in 2014...in fact, I believe I recall seeing the article at that time. He is the brother of of ex-mayor of Chicago and Obama advisor Rahm Emanuel.

I think that once we are suffering the actual disabilities of any disease, it is a rare person who would not accept a treatment that could help mitigate the situation. I do understand the temptation to avoid treatment when someone is on the wrong side of 70, has an excellent current QOL with only minor age-related deficiencies, and then the person, eg PCa-diagnosed man, is told to try a treatment that might or might not extend life but that is almost guaranteed to result in immediate lowering of QOL ? I'm thinking of radiation PLUS ADT for older non-metastatic asymptomatiic men with unfavorable risk PCa.

SpencerBoy11 profile image
SpencerBoy11

If I had his crystal ball, I would buy some lottery tickets. Just turned 85. My birthday present to me was to fly a helicopter again after nearly a 29 year break. (I have scheduled another flight when I am 90.) My prebirthday gift was a dx of myelodysplastic syndromes, trilineage with ring sideroblasts ( MDS-RS). Incureable at my age. I have had a DNR for years. I could also get hit by a car. I know when I may want to leave this world, I only need to stop eating and drinking water. Not ready yet, so will have my glass or two of wine or the hard stuff.

Yesterday went to a patient/caregiver forum in Tucson run by the MDS Foundation. Lot of good info and great to exchange stories and information with those living with it. All the signs point to my prostate radiation as the causation of my MDS. Had I been told when I started my radiation treatments that it could cause MDS, I still would choose the radiation.

Now I am busy planning and organizing Mardi Gras for our RV Co-op. Let the good times roll.

awb1 profile image
awb1 in reply to SpencerBoy11

You Go Dude ! ;-)

kreg001 profile image
kreg001

I can imagine millennials rubbing their hands with glee after using their calculators or asking Siri to figure out that 75 is boomer age.

My wife says she ran across this guy doing an interview and he adamantly denies he was suggesting we let nature take its course without intervention after some magic age.

FYI

Carlosbach profile image
Carlosbach

Maggiedrum,

Thanks for posting the link to this thought provoking article. Since the article was published in 2014, I went looking for updates and found a link to this follow up advisory.com/daily-briefing...

Cancer2x profile image
Cancer2x in reply to Carlosbach

In this update this guy said that people who are active after age 70 and above are engaged in “Play”, and those activities are not “meaningful” as work in life.

This guy is a clown. I actually hope he lives to 75 to call his biased bluff. He should read Viktor Franckels “Man’s Search For Meaning”.

Boywonder56 profile image
Boywonder56

75 is a good run especialy with this caca.....ill be ready to pull the chute by then.....unless🙄

SimMartin profile image
SimMartin

I have a couple of issues with this apart from him being still way off 75.

whilst I was working on geriatric wards for 5 years as a psychologist in training I had plenty of time to contemplate the issues of quality over quantity then I was only 40 some 32 years ago. I used to say to the younger staff - look this will be you one day If you’re lucky and a survivor.

But the questions is - is it lucky to live long into your 80s and beyond? Everyone is different, some rage for more time even when suffering, others seen to want to let go even when things don’t seem bad at least to the outside observer.

so everyone is different and different at different stages of life and illness.

But as someone who was totally paralysed ages 5 with polio - the most extensive attack - no breathing, swallowing or anything below the neck - but total sensation in tact - so pretty painful in many ways. Of course I was 5 - so that’s relevant because whilst I later learnt my mother was saying she couldn’t bare my surviving if I couldn’t walk at least - I on the other hand just didn’t project into that, I was too young and so the present only mattered- which wasn’t great, in an iron lung and tube fed but every day was just that a another day. So 2 years later I left hospital and got on with my life, just about walking and wheelchair so still very physically impaired - a disabled person. So the idea that disability and pain and not being able to join in or have the same life as my peers was nit easy but at each stage I grabbed what enhanced my life and reject what didn’t (often to the frustration of others). Being disabled, ill, depending on others and in pain isn’t a reason to decide to just check out - at least for me as I’ve had a lifetime to get used to it.

And when he says of death “It deprives us of experiences and milestones, of time spent with our spouse and children. In short, it deprives us of all the things we value.” Well it doesn’t - admittedly I am an atheist but when dead we are in a non state so we miss nothing because we are not in existence. It’s others who may suffer at our absence at events a milestones. How we go through the process of dying is of course a different issue.

I do however want to say how despite having a life of training to deal with life impairing conditions and increasing dependence on the generosity of care and assistance of others / when I contracted prostate cancer and then G9 it still like anyone hit me emotionally very hard ! But I still often feel when I read of others with PCa maybe the physical impairments are less traumatic as I have so much of it anyway.

I feel that my psychology training and study of ethics and philosophy has perhaps also been a help as I learnt from patients so much over the years. Now I have to live with it in my way and will end up dead in what ever way and when fate decides - it’s not really a question of if but when.

As a modern society I think we use medicine (and religion) not to give us options nd insight but to avoid the now and also the basic fact that death is inevitable- irritating as I feel that fact is, until maybe one day it won’t be irritating me as I will just not be ?

Miomarito profile image
Miomarito in reply to SimMartin

Holy cow Sim, what a story!

Carlosbach profile image
Carlosbach

I get the thoughts behind Ezekiel’s statement, which are not as emphatic about dying at 75 as the magazine’s attention grabbing headline.

I come from long-lived people. My dad and mom are still alive at 88. Until a couple of years ago they had a good quality of life. My dad in particular was still healthy, and was very active in his community and church. On the other hand, the last couple of years their health has deteriorated precipitously, and consequently, so has their QOL. They are still fighting to stay alive, as their world becomes smaller and their capacities diminished. Despite this, their desire to live is still strong.

I too love life. I’m very active and engaged, and don’t want to give up a moment of it until I have too. However, if this disease, age, or some other catastrophe were to require that the doctor's take extraordinary measures just to keep me alive, then (at this point) I would have to agree with Ezekiel. After sitting with others as they weakened and died, in my mind there is a definite decision point as QOL declines and each day just becomes just continued existence. In that case, I don't want to let an inflated sense of self-importance to make my decisions (God knows it has made many of my previous choices for me).

I don’t know for sure what I will choose to do when I reach that decision point, but my plan is to stop grasping for final days if those days are just filled with pain. If I am just existing, I don’t want my continued survival to exhaust my caregivers and drain my wife’s finances. I have lived a good life. If I were to be in a fatal car wreck this afternoon, or my scans next Friday show that the cancer has progressed rapidly to end state, so be it. Thanks to everyone and everything that contributed to making me feel satisfied.

Miomarito profile image
Miomarito in reply to Carlosbach

Carlos, I believe my husband feels exactly like you. I don’t know what our future holds, but will never let him suffer, never! I can’t believe how much we have both changed. Both of us never doubted we would live to a hundred together, still sking in the New Year. … sounds foolish now!

Carlosbach profile image
Carlosbach in reply to Miomarito

I wish you had gotten to ski in your 100th new year with your husband. I know my wife and I had dreams that we won't happen now, but she is here with me when I need her, and I will be here with her as she wants/needs until one of of passes on. How lucky is that ?

cancerfox profile image
cancerfox

“How old would you be if you didn’t know how old you was?” A quote by Satchel Paige.

🦊

Carlosbach profile image
Carlosbach in reply to cancerfox

Old enough to know who Satchel Paige was, and young enough to still remember who I am on most days...

cancerfox profile image
cancerfox in reply to Carlosbach

I actually saw Satchel pitch a game in his latter years when he was touring the country with an exhibition team, it must have been in the late 50's or early 60's. His team played against a local amateur league all-star team that I later played in. Satchel's team won a low-scoring game by scoring a run or two by using well-placed bunts for base hits. He didn't have much of a fastball by then, but he threw at a lot of different speeds to keep the batters off balance.

Carlosbach profile image
Carlosbach in reply to cancerfox

Sounds like a cool experience for sure

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