One, this barely touches on the opposite side, when doctors give up too soon. When my mom had a brain tumor that had a high 5-year mortality rate but still had plenty of time left, a number of doctors we encountered either gave us premature "time to give up" speeches or were just lackadaisical about treating her symptoms. (None of those doctors were her neuro-oncologist, and my mom was a fighter who would not give up on the time left to her.) Had I and my brother not been there to push back on the medical system, we would have had months less with her. Should we minimize the suffering when there's no hope? Definitely. But not until that point unless the patient clearly chooses otherwise.
Two, I think the much bigger problem on either side is not doctor attitudes, but cultural attitudes towards death. It's something a lot of Americans avoid talking about, avoid thinking about. My mom was a fighter, but because she had run an adult foster care home with an elderly wing, she was was also a realist. She had a DNR on file and we had all talked about what we wanted years before she got sick. We knew she wanted as much of a good life as possible, and then she wanted to be done. So when the neuro-oncologist said we couldn't do any more, that was it, and we transitioned to hospice. But from what I understand, that's not the common reaction. I hear stories from friends of dying patients dragged through all sorts of unwanted treatment because the adult children of the patient are unable to deal with their emotions enough to honor the patient's wishes, tend to the patient's needs.
So I ask everybody to talk with your family about what you each want. One framework I've used is Five Wishes, which has forms you fill out and material to help a family discussion along:
This is the most important thing you can do to minimize overtreatment: talk about it with family and get something written down. That way when the doctor turns to you and asks what the patient wants, you can answer with confidence.
I think it’s also true the other way. Write down what doctors say. Far too often what doctors said and what people heard or can recall do not line up. That’s just human nature.
A physician friend of mine prints out what she is going to say in serious moments and then hands it over after the conversation. She said this was because of how many times, “in cases like this, the x year survival is y percent” being later repeated as “doctor said Z only had x years to live.”
Yes, definitely. And it shouldn't be the patient doing the writing! Having somebody less involved to take notes can be super helpful.
And yes, physicians should absolutely write things down too. Once I went in for surgery and after I woke up both the surgeon and the anesthesiologist talked with me and told me important things. Hours later, I only remembered scattered phrases, with my clearest memory being me saying I didn't think I was in shape to talk then. Happily, some of what they said was written down. But not all of it!
Sure. But we ought not characterize doctors as “giving up” if they come to a conclusion that it would be better for the patient to pursue a path that shortens expected life span but increases quality life span.
That is a conclusion that doctors should certainly express if it is a well-informed and well-considered one. Which is what our neuro-ongologist did at the right time.
But we had one doctor give us the "time to let go" speech because he had confused a "grade 4 astrocytoma" with a generic "stage 4" cancer. He wasn't my mom's oncologist. He wasn't an ongologist at all. He was an arrogant idiot.
And then there were the doctors, also not oncologists and who had not spoken with my mom about her preferences, who did not see the point in properly treating secondary symptoms in somebody who was trying for the extra months her oncologist thought was possible. Those doctors can also go fuck themselves.
It is those doctors that I am thinking of when I talk about under-treatment.
I think it’s a matter of ability to fight. At some age we all lose that ability and any fight is likely going to be brutally painful and exhausting, which just leads to more suffering.
If you get cancer and have the ability to fight, definitely do your own homework on the treatment options and what the survive-ability and lifestyle looks like. My wife had cancer in early 30s and she fought and thrived. We found the key was finding younger doctors that were more up to date on these things. Not all doctors are equal. Many doctors treat tumors and cancers how they were taught in medical school, which may have been 30+ years ago. Others keep up with the profession and advancements. We found especially with surgeons the techniques the younger folks used were advantageous. Other doctors would actually recommend doctors saying stuff like “he’s young but just studied this new technique and has 2 years of practice, he’s a rising star.” So I suppose this is a known phenomenon.
Yes, this stuff needs to be discussed by every family, at length, and years before stuff starts to happen. I have not heard of 5 wishes before now, but my family had health-care directives as well as power-of-attorney written up by a law firm that specializes in elder law. This was super valuable. There are also serious financial implications for families who end up with someone in a nursing home.
"End-of-life" gets really complicated and bureaucratic at one of the most stressful and challenging times for families. It's really important to plan ahead for this time, in advance, when everyone is thinking clearly and rationally.
I'd tend to put myself into the other camp, that doctors tend to be too slow to reach for palliative care options, but your comment is thought provoking.
> Should we minimize the suffering when there's no hope? Definitely. But not until that point unless the patient clearly chooses otherwise.
There are so many things to weigh here, I can't imagine having to help other people make this choice. How do you decide when there is no hope? How do you decide when the hope that there is, is likely outweighed by the suffering that will be endured to achieve it? What is an appropriate amount of suffering for a 1 in 4 chance of five more good years, or a 1 in 10 chance, or a 1 in 25 chance? What is the break even point in terms of quality of life where it's better to have a gradual decline at home and then in hospice rather than spending the only months or years you have left under a battery of treatments to buy the lottery ticket that you might come out well-ish in the other side?
> other camp, that doctors tend to be too slow to reach for palliative care options
I don't see a need for camps here. Both can be true! Some people can get over-treated. Some people can get under-treated. These are both problems that we should fix.
> I can't imagine having to help other people make this choice
These are inevitably personal decisions. There are few wrong choices, and often few good ones. In my limited experience, the doctors who specialize in these sorts of thing are pretty good at helping with that choice. They explain the options, say what they can about the odds, and then let the patients and their families decide.
Which is why it's crucial that families talk about these questions before it matters. We need to understand our loved ones' preferences and views, and they need to understand ours. Because once it comes to it, at best it will be a very fraught and difficult time. And at worst, the patient may not be in any state to answer the questions.
> Atul Gawande's 2014 book on the topic of end of life care
"Being Mortal." An excellent book. We and all our loved ones will die; until you come to terms with that, you will not be able to make good decisions as the end approaches.
> One, this barely touches on the opposite side, when doctors give up too soon.
This was very much my experience with my Mom’s brain tumor.
While I can’t say my Mom’s regular cancer doctors gave up too soon (we had an amazing surgeon, as well as an oncologist that helped fight until the final stand) - it was amazing how few voices actually encouraged her to fight.
She was diagnosed late stage, with. 6-month or less prognosis.
From the moment she was diagnosed, she had a literal line-up of nurses, general doctors, and social workers incessantly reminding her how poor her outlook was, and that “there’s no shame in giving up”.
Seriously, it was relentless how often they would come into her room, put on a somber voice, and say “You know the outlook on these things isn’t very long, and we don’t have good treatments for it.”
I will never forget those first few days in the hospital when she was diagnosed and awaiting surgery. The demoralized look on her face. The incongruousness of being asked to concede a battle you didn’t even know you were in until days or hours ago.
It was only a couple of acquaintances who themselves “beat the odds” that finally gave her the other perspective.
Her eventual oncologist also had the right attitude - a healthy balance of positivity and being realistic.
But that was not the norm, particularly among medical professionals. She ended up eventually passing away after about 5 years - 4.5 years longer than expected. Amazing years that we had together, yes with good days and bad days, but days we had together.
And fwiw, I did everything I could to make sure she wasn’t sticking around just for me or for family. She loved life, she wanted to fight as long as she could still enjoy life, and I cannot tell you how terribly set back she was every time she’d encounter a nurse that would look at her like she was a dead person walking, or when she’d get the “no shame in giving up” speech. But the rare voice that gave her (realistic) hope and positivity was an absolute Godsend.
There is a balance to be had here. Prolonging suffering isn’t right, but neither is the reactionary response in recent years to virtually encourage anyone with a terminal illness to immediately give up.
Thanks for sharing this. Yes, I can totally believe this.
I have all the respect in the world for people who say, "I don't want the high-treatment route; I'll enjoy what time I have left." But that was not my mom! She was a fighter all her life, and that's how she wanted to go out. I respected that too, and we never let the doctors forget who their patient was.
I'm very glad to hear that in your case the fighting paid off. That much extra time is an incredible gift, and it's wonderful you had it.
One, this barely touches on the opposite side, when doctors give up too soon. When my mom had a brain tumor that had a high 5-year mortality rate but still had plenty of time left, a number of doctors we encountered either gave us premature "time to give up" speeches or were just lackadaisical about treating her symptoms. (None of those doctors were her neuro-oncologist, and my mom was a fighter who would not give up on the time left to her.) Had I and my brother not been there to push back on the medical system, we would have had months less with her. Should we minimize the suffering when there's no hope? Definitely. But not until that point unless the patient clearly chooses otherwise.
Two, I think the much bigger problem on either side is not doctor attitudes, but cultural attitudes towards death. It's something a lot of Americans avoid talking about, avoid thinking about. My mom was a fighter, but because she had run an adult foster care home with an elderly wing, she was was also a realist. She had a DNR on file and we had all talked about what we wanted years before she got sick. We knew she wanted as much of a good life as possible, and then she wanted to be done. So when the neuro-oncologist said we couldn't do any more, that was it, and we transitioned to hospice. But from what I understand, that's not the common reaction. I hear stories from friends of dying patients dragged through all sorts of unwanted treatment because the adult children of the patient are unable to deal with their emotions enough to honor the patient's wishes, tend to the patient's needs.
So I ask everybody to talk with your family about what you each want. One framework I've used is Five Wishes, which has forms you fill out and material to help a family discussion along:
https://en.wikipedia.org/wiki/Five_Wishes
https://www.fivewishes.org/for-myself/
This is the most important thing you can do to minimize overtreatment: talk about it with family and get something written down. That way when the doctor turns to you and asks what the patient wants, you can answer with confidence.
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