I’m the person that brought up palliative care and I just want to clarify again that I thought she was wonderful. Truly, the most accurate accounting of my husband’s life expectancy that we were given. As to the other item mentioned by QtM about general guidelines, I agree.
For example, I have a dear friend whose spouse is in their final stage, and they’ve both done the same thing. Understandably, they happily went on about beating the only one year deadline. However, it was more like what was described than any hard and fast “you’ll be dead before Christmas” prognosis. And I don’t think it’s fair when people paint the doctors out to be villains or idiots when they do that. In our case, I was frustrated because no one explained how dire and immediate it was. Conflicting opinions didn’t help any either.
The question is can you sue if you live significantly longer than the doctor predicts. I’d hate to sell my house and max out all my credit cards only to find I’ve got another 20 years to live…
It would not surprise me if a number of HIV sufferers were in hospice and very near the end when some of the more effective drugs came out and put their infections into remission, resulting in some unusual situations. Among them, viatical settlements where people used their life insurance policies to get immediate money for medical care. If the person who did that has a sudden recovery and lives another 20 years it can have very serious financial repercussions for the party that is now the beneficiary. I doubt viatical settlements for people with HIV infections are as easy to obtain as they once were.
I don’t think you can sue a doctor for living past the date he or she estimates you will die, though.
The CA media made a huge story of a 29 yr old who went to OR to die under OR’s “Death with Dignity” law (fatal dosage of barbiturate).
Now CA has a law enabling MD’s to prescribe such dosages, but only if the patient "has less than 6 months to live, as certified by (2? 3?) doctors unrelated to each other. Can’t be from same clinic is how I read it.
My PCP is not thrilled and is reluctant to participate. I’m not certain which side of that prescription pad I’d rather be, myself.
The law does raise the issue: Who is going to be the one certifying “6 months or less”?
And: patient is in extreme pain and is absolutely miserable. But: her disease progression is absolute text-book typical. She has 8.5 months to go.
Who is going to tell her she has to suffer another 2.5 months before she can die legally?
Again, on which side of that pad would you prefer to be?
I found my grandmother lying on the floor, almost unconscious after vomiting blood, on Thanksgiving Day 2011. She was admitted to the hospital immediately and the following day we knew she had a tumor in her stomach. On the next day, an oncologist met with us to tell us that is was stomach cancer.
She was very kind and compassionate and discussed the potential options (chemotherapy and radiation). Because my grandmother was 86 and had severe COPD and crippling rheumatoid arthritis, surgery wasn’t an option. She was also very honest about the odds of chemo or radiation working, which were very low. She also discussed the diminished quality of life for my grandmother’s remaining days if she chose one of the treatment options (she was basically saying that my grandmother might live a little bit longer but it would only prolong her suffering and rob her of any good days she might have left).
My grandmother asked her very directly, “If you were in my situation, what would you do?” To which the oncologist said, “I would go home and enjoy the time I had left with my family”. When prodded for an estimate of how long she would live, the doctor said that most people in her condition and with her diagnosis lived about 8-12 weeks.
My sister and I moved in with her when he brought her home from the hospital. We had 11-weeks and 4-days with her and all but the last week was very good. She didn’t suffer nearly as much as we had been told to expect (by a hospice nurse) and we enjoyed our time together very much.
I’m very thankful that the oncologist was honest with us about how much time she had left. If I had a terminal illness, I’d certainly want to know how long I could expect (or hope) to live.
And we even have people in this thread who claim that the doctor “told” them how long they were going to live.
Fighting ignorance is so frustrating.
I was on of the primary decision makers in three cases where we had to discuss the patients’ conditions and they could not participate.
First was my grandmother who had had a massive stroke. The second was my father who had leukemia and the third was my infant son.
When my father had cancer, he and my mother were making the decisions, but as things got worse there was an episode when he was delusional and could not participate. While my mother could have made the decision on her own she asked for my participation.
The oncologist was quite frank and carefully explain what the prognosis was. He gave rough estimates of survival odds and expected lengths of time for each of the options.
As Broomstick said, it was pretty much “this is what we could expect.” I agree that most people don’t understand statistics. Also, most people aren’t really good at listening when they are the ones facing death.
The last case was with my son, and as a newborn, he wasn’t going to be making any decisions.
Again, the doctors were open and carefully answered all of our questions.
However, because the condition was diagnosed during the pregnancy and we had to make decisions before the actual birth, the discussion occurred before the doctors were able to actually directly examine our baby.
During our conference with our primary physician and two specialists, my wife focused on their exact words while I was more concerned with their body language. We came away with different impressions. My wife though there may be more time while I thought that the doctors were more pessimistic.
It did turn out that he only had a few hours to be with us.
One of my girlfriends passed away several years ago from breast cancer. When she was diagnosed, she was stage 4, so they knew she was likely to die of it - and within a few years.
Chemo kept her going for two years, and one year in July it was getting bad, had spread to her brain, and her doctor said “investing in green bananas, probably fine - investing in a calendar that starts in January of next year - probably too optimistic.” She scheduled her own “pre-memorial” and we all came to say goodbye and celebrate her life while she was still present. She died about six weeks after that oncologist appointment, about three weeks after her premorial.
Oncologist told a friend of mine that “every patient we’ve had with this was over 90 at diagnosis” … and also “every patient we’ve had with was dead within three years”.
He’s still going 15 years later, but at age 60 that’s not totally unexpected.
From the blog of an acquaintance diagnosed with terminal oesophageal cancer:
“…was given mere months to live if he didn’t start Chemotherapy (Chemo being the only option offered given the late stage of the disease) treatment immediately and only 15 months tops with treatment.”
Very similar to accounts I’ve heard from other people, that they were given two timelines: with and without treatment.
Whether that’s what the doctor said or just what they heard is a matter for debate.
My Mom had pain in her arm so we went and got some X-rays.
“Hmmm, that’s odd. Let me run this by Dr. ABC.”
Dr. ABC showed up, looked at the X-rays, examined my Mom, talked to her, checked over her medical history. Took him about 10 minutes. He wasn’t smiling.
I pulled him aside, “Give it to me straight, I can take it.”
He looked at me evenly. No emotion, just the level certainty of someone who had been around the block 25 times. He projected the complete, humble, perfectly-matter-of-fact confidence of an old pro and I knew this was a man who knew what he was talking about.
Doctor: I’m afraid I have some bad news. Your condition is terminal and there’s no cure.
Patient: Oh my God! How long do I have to live, doc?
Doctor: Ten.
Patient: Ten what? Years? Months? Weeks?
Doctor: Nine…
It’s more accurate for things for which there is more data, but that is true of any correctly-calculated statistic. But it is a statistical accuracy: two statistical distributions can have the same average with widely different spreads. Most people don’t understand statistics at all; they tend to think that “the average” is “the only possible value”. All those people who think they “beat the stat”? They don’t understand it at all. An example that people usually get: the average age of Americans does not equal the age of every person in the US. The data I’ve normally been given includes median (average life expectancy) and some values for “% of patients who survive after x time”. The people who “beat the stat” are part of that survival %, they’re as much part of the stat as those who die the next day (and who may even die of unrelated causes: being sick doesn’t make you immune to car crashes, nor cancer immune to heart attacks).
One of the problems with rare illnesses is the lack of information, not just treatment: neither patients nor families know what to expect.
It’s my understanding that doctors tend to give conservative estimates of how long a patient they’re treating has. Reason being that if they’re optimistic and the patient doesn’t last that long, then the relatives could blame them for failing to treat the patient properly. While if they’re conservative about it, then it’s easier to be a success if you beat the suggested likely outcome.
I once saw a list of actuary jokes, if you could imagine such exist, and one went like this:
Doctor: I’m afraid I have some bad news. You have only six months to live.
Patient: What? Is there anything I can do?
Doctor: only one thing. Marry an actuary.
Patient: will that really make me live longer?
Doctor: No. But it will seem longer …
Yes, they do. My cousin was recently given 3-6 months by his doctor. It’s been six months and he’s still doing fairly well, so it’s an educated guess, at best.
When my father was diagnosed with pancreatic cancer, he was told in terms of “people at this stage, with this type of cancer typically live…” and that’s exactly how long he lived. But at no point did that doctor say, “Your expiration date is xx/xx/xxxx.” I have known other people who were told “If you respond to this drug, your life expectancy may be 10 years, but if you don’t, we’ll try another drug, or you can choose non-treatment. Without treatment, people generally live about 18 months from your stage of diagnosis.”
I too, hate those woo people who talk about someone being “given 6 months to live,” before he switched to the cabbage juice diet. Six months was an average, no doubt, that included plenty of outliers, and the person probably had conventional treatment prior to the woo.
