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by Paul Taylor
41 Comments
The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent toAskPaul@Sunnybrook.ca
Question:My aunt was diagnosed with advanced ovarian cancer. Her doctor said she had about six months to live. But she died just over one month later. Are doctors usually this bad at predicting how long patients will survive?
Answer:Unfortunately, doctors get it wrong more often than they get it right and most of the time they overestimate how long patients will live. Many physicians will shy away from making specific predictions. But patients and their families often want some idea about how long they might have left. And that desire to have a window on the future is certainly understandable.
However, the difficulty of making an accurate prediction was revealed in a study led by Dr. Debbie Selby, a palliative-care physician at Sunnybrook Health Sciences Centre.
The researchers reviewed data collected on 1,622 patients diagnosed with incurable diseases. Palliative-care doctors assessed each of the patients. During the assessments, the doctors recorded details about the patients and gave an estimate of survival time. In particular, the doctors said if they thought a patient would live less than a day, one to seven days, one to four weeks, one to three months, three to six months, six to 12 months or more than a year. The estimates were not given to the patients, so the doctors weren’t hampered by how their predictions might be received.
An analysis of those estimates showed that the doctors’ predictions often missed the mark.
“We are not good at being very accurate,” says Dr. Selby. “The vast majority of patients have less time than we predict.”
The doctors were right only half the time in cases involving patients who had less than a month to live and also for those who survived longer than a year, according to the study published in the Journal of Pain and Symptom Management.
Predictions between one month and one year were even less accurate. The doctors were correct only one-third of the time. “And we tended to systemically overestimate the time left.”
Dr. Selby noted that the majority of terminally-ill patients fit into the middle group – with a survival time of a month to a year – the period that seems the most difficult to predict accurately.
So, why are the predictions unreliable? For starters, many of these patients are going through a “transition” in their medical condition and it is not easy to determine if they are in a steady or accelerating rate of decline. An unexpected turn of events – such as a bout of pneumonia – may suddenly speed up the dying process.
There are numerous measures – such as medical tests, physical exams and the patient’s history – that can also be used to produce a statistical likelihood of surviving a specific length of time. Yet even these calculations “are not any more accurate than the physicians’ predictions of survival.” she says.
Dr. Selby is convinced that not much can be done to significantly improve the estimates. As a result, she believes it’s important for health-care providers to let patients know that the estimates are simply best guesses. “We can’t tell the future,” she says, “but we can use our best guess to help people think about what may be important to them in whatever time they have left.”
Without those discussions, there is a risk that some patients may continue to focus on their ongoing medical treatment, neglecting everything else. Even when patients respond positively to a treatment – such as getting a reduction in the size of a cancerous tumour – it may not actually help them live substantially longer.
“I don’t have any qualms if somebody is getting chemotherapy until three days before dying so long as that was right for that person. But did that person have the opportunity to explore other options and decide what was right for them? I am not sure everyone does.”
For instance, some patients may want to take a trip to visit a special place, or see a loved one for a final time. Still others may want to be present at a certain event – such as the marriage of a family member. Sometimes, weddings can be moved forward, she notes. But other milestones – such as the birth of a grandchild – are simply not going to happen in time. In those cases, some patients may want to write cards that can be read by family and loved ones at key points in the future.
“I don’t think that we, in the medical community, do enough to ask patients what matters most to them,” says Dr. Selby. “We should help patients use their remaining time in the way that is right for them – recognizing that it is probably shorter than we think.”
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog,Personal Health Navigator, is reprinted on Healthy Debate with the kind permission ofSunnybrook Health Sciences Centre. Follow Paul on Twitter@epaultaylor.
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Paul Taylor is a health journalist and former Patient Navigation Advisor at Sunnybrook Health Sciences Centre, where he provided advice and answered questions from patients and their families. Paul will continue to write occasional columns for Healthy Debate.
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41 Comments
Kirsten says:
April 2, 2021 at 4:06 am
My mum has been given 3 months to live but doctors have told her that they can give her another 20 years to live if gets treatment she’s been doing both chemo and radiation shes been put down as terminal stage 4 Metastasis
Kathlleen says:
February 15, 2021 at 5:36 am
I wish there was a way to send this to my i guess call him was my doctor he gave up, after promising trick left in his pocket after a blood pull never looked at numbers or went thru them with me never took a ct scan after 5 days of radaition never went thru that test because he never ordered it he never told me how much i did have he let his nurse practitioner tell me and i was there to talk about his trick left in his pocket what trick give me 3 months and let me drive home myself what a hero and my blood work number where aLMOST PERFECT
Michelle G Darracott says:
February 4, 2021 at 8:17 pm
I’m sorry for your situation. My mother in law is going through the exact same thing with the fluid draining (she has metastatic ovarian cancer all over her body . Get off the conspiracy theory websites, relax and enjoy your final time here on earth. Stress will kill you quickly. They are more likely to note someone didn’t die of Covid even when they did, if they have other health conditions. You have to test positive for Covid, though, for it to be listed as cause of death, so if you have tested negative your cause of death will be accurate. Chill out.
Michelle G Darracott says:
See AlsoBladder control: Lifestyle strategies ease problemsOveractive Bladder Diet: What to Eat and What to AvoidProducts to help with urinary incontinenceHospice Foundation Of America - Signs of Approaching DeathFebruary 4, 2021 at 8:09 pm
That he probably had a bad diet and lifestyle. That’s what most disease boils down to. Preventable.
Nikki says:
January 30, 2021 at 8:31 pm
That’s so very true, I 100 percent agree that it should not be false hope of how long you have before passing..
Georgia says:
January 22, 2021 at 2:00 am
I didnt understand what you wrote
It was confirmed yesterday by my doc. I need a transplant asap. Im not that sick yet, but i feel the rapid decline of my body.
I feel like the doctors and our politicians are deliberatly meddling in health care, and instead of helping me live they dont give me any treatment or any hope. They know im going to die soon and it took a month to get the fluid pumped out of my belly while I suffer. My belly grew so much I couldnt breath, and the big muscle in the middle of my stomach that runs vertically up and down tore! Even after the emergency room and calling the doc. That did surgery on me they let me go another week with the fluid building up by the minuite Can u imagine the damage that did to my insides! No one is in any hurry!
No one cares! It feels like the standard procedure is to avoid the patient and not schedule for over a month! When they know that time is everything. Even in the emergency they wouldnt pump it out. All they talk about is how its too time consuming, for staff to sit there while it drains ( they have better things to do) On 1/6/21 It took about 20min to drain the water from my stomach over a gallon!. I feel that standard protical is to drag their feet the first 2 to 3 months of your treatment and hopfully by then u will be almost dead.
If everything goes like your doctor plans you will be in a brain dead coma soon after. So you cant complain about how you were treated who knew? And your doctor is a hero a star player, bringing in all that money for the hospital during covid. Cheating my insurance co. With unnessary blood tests not for liver diagnosis. live in a very small town under 12,000 ppl He did 3 emergency gull bladder removals including mine in one day! My friend had hers removed by him the week before that! What a coincidence…. And this great hospital these (hero’s) get to lie and put COVID-19 ON MY DEATH CERTIFICATE! BURN IN HELL HILLARY CLINTON AND NANCY PELOSI!Please dont let these devil worshipers kill me just for fun, someone help me please!!!
Misty says:
December 6, 2020 at 9:16 pm
My husband went in for dental work for dentures. He was told he had cancer and he had 6 months to live and he needed to good his affairs in order. He decided if he was going to die there was no reason to go thru the expenses of getting what was left of his teeth pulled and dentures and the pain and expense if he has cancer.
Billie Gatewood says:
November 22, 2020 at 2:52 pm
2018 my doctor told me he give me 6months to a year to live if I didn’t stop smoking and drinking but told me I didn’t have cancer so what’s wrong with me
mum says:
November 19, 2020 at 8:54 pm
why
Janice Keller says:
November 6, 2020 at 2:47 am
I believe that positive thoughts bring positive action
I believe that only our Father God can know in reality when we will leave this Earth
He has our life mapped out from beginning to endCheryl large says:
September 12, 2020 at 8:59 pm
Thank you for your opinion as I appreciate all the information as I have never seen a Dr. say what the thought how long to live & they were so close. It helped to give more less to plan out things. Only God knows how long.
Barbara Gibson says:
September 2, 2020 at 2:45 am
We were told my daughter had about two weeks left that was six weeks ago. The strain is almost unbearable
Mary says:
August 26, 2020 at 5:59 pm
My brother was diagnosed with end stage glioblastoma, not operable. Given 6 months to live. 6 months into that time period, he was given 3-4 weeks. That ended 2 months ago. We call him the Duracell Bunny now – he is only getting better on the steroids. Its been party time right through this period – he has defied all the odds. Very comfortable, no pain, few side effects of the high dose steroids. His mobility is poor and his blood sugars unstable. He is enjoying life, having honest and deep conversations with all his friends/family. If I could end my life like this last 9 months with him, I would be quite happy. A positive attitude and good palliative care makes a huge difference. He has come to terms with his fate and is quite happy to go when his time comes. I don’t see any sign of it coming soon though…
horst pokorra says:
August 23, 2020 at 1:36 pm
Yes, my doctor lady gave up on me. I have had that cancer for about 20 years. I had radiation, chemo therapy, a lot of medications and my PSA went upover 1000 . How much of a chance have I got. ???
Horst Pokorra, Oakhurst, CA 93644Anne Gee says:
August 7, 2020 at 3:00 am
My husband has dementia, severe mental Impairment, epilepsy, heart failure, 2 hips with mental strips after falling and breaking his left and right hip on 2 separate occasions, sclerosis of the liver, recently had a stroke, which has taken all his left side. He cannot eat or drink and has to have assistance.
Is he at the end of his life, if so how long do you think he has left. Cannot hear, does not understand what I say. First time I saw him was yesterday after 6 months of lockdown.
Brenda williams says:
July 18, 2020 at 8:32 pm
So considered opinion is that the time given to a terminal cancer patient is often longer than expected for actual survival? Why not just tell them the horrible truth? My father was sent home from hospital to be cared for by his family as he didn’t want to go to a nursing home, we were told he had maximum of 6 months…. he died within 6 days, we felt cheated. Yes if we were told his death was imminent we would have been devastated, however we would have been better prepared.
HOWARD HILL says:
July 5, 2020 at 2:00 pm
Weakness from not eating right from depression, can this kill
Maria roberts says:
June 3, 2020 at 11:08 am
Very helpful. I was told 6- 12 months
That was about 10 months ago. My next scan should shed more light on things. And my brother has also. Gone over his 12 months. So can only be seen as a bonus right. We both have the will to live in our 50 s i wont be needing a reply thank you.Ruth A. Heatherton says:
August 7, 2020 at 9:49 pm
My opinion on this is going to differ from the article and most of the comments. My father was recently hospitalized for low sodium. Right before being released after two days, the attending physician felt she should tell him that he had about 4 to 6 months to live. The only tests she had done were blood tests for the low sodium. She could not really be familiar with any of his other ailments. She stated she preferred to be frank with him so he would enjoy the rest of his life. This has had the opposite effect. He went into the hospital managing his illness. And now he feels like he has an expiration date. Did the doctor really think that my father would wake up tomorrow morning and start living his life to the fullest? As if he had not been trying to do just that. This is a man who needs knee joint replacement but is too old to have it. He is 93. He had a heart valve replacement 2 years ago but that’s doing fine. He has high blood pressure. A constant ear infection. Mild vertigo most of the time, anxiety such that he needs Xanax to sleep. And a few other things I sure I am forgetting. If he could go to senior dances still, he would. If he could drive places, he would. But now since he has been given this death sentence, he is losing all hope. How was this helpful? And it’s only ONE doctor’s opinion.
Mavis Malpass says:
March 8, 2020 at 3:43 pm
I have dilated Cardiomyopathy stage 3 and I have now made the decision to stop my heart medication as i could not cope with the side effects of the drugs any more and want to be in control of how I die . I dont know how much longer I will live now.and the doctors cant say as i have RA to .so this effects my health and strength to .i am not scared to die . in the words of Peter Pan (to die will be a great adventure)!! And although not religious I am spiritual.and have experience my passed on relatives near me often . So I look forward to catching up with them all again .What worries me is seeing the pain my lovely 4 children will experience at my death . As I still live with that feeling every day .when I saw my own mother die in front of me .and I wish I could spare my children and family that pain .But they are all strong and will support each other .and I will always be there watching over them .So bring it on .!!! Mavis xx
LINDA says:
March 7, 2020 at 8:30 am
I am a cancer patient with 3/6months left to live I have taken this meaning as from day 1 ending with last day of the 6 months or whenever what I find hard is knowing but have come to prefer quality of time rather than plenty of time and no quality.
But I do feel sorry for doctors who are put in that position when asked to give time a patient has left to live? or to guess but most patients I feel already know the answer themselves, and just want, conformation.
bob says:
December 2, 2019 at 1:35 pm
The doctors told my grandma that she has 3 months to live are doctors always right.
Hanssen Tulia says:
November 12, 2019 at 10:00 pm
Really great post. This answered the majority of my questions. When I read this I actually opened up a word document and started taking notes haha.
Ian Hamilton says:
September 17, 2019 at 12:51 pm
wise words, shame about the over-estimations but people do need a timescale to help them
Nancy Simpson says:
August 4, 2019 at 1:55 pm
Thank you for answering a part of what was written before I learned. Does DNA determine how much longer a person has to live ?
Alan parsons says:
June 2, 2019 at 2:39 pm
We are all dying from something. It begins the second we are born we are heading towards death . Some get there sooner than others but it will be something that we will all Eventually have to deal with. I can only hope my stage 4 in operable cancer is quick and painless . There is no treatment or cure for dying, ever living thing must face it from a blade of grass to the oldest living thing. Your time will come so it should also come as no surprise when it does. It’s Inevitable so embrace it and accept it
I concur says:
September 9, 2019 at 11:56 pm
I agree. My brother is really sick and his wife has said for over 6 yrs he is dying. He has cancer of the liver. He is really strong hanging in there for years.Today she said the doctor is giving him one week. I feel that is up to him and his spirit not the doctor. No matter how sick he may look or feel. When Dr say this it is almost like turning on your dead switch. The placebo. If the TRUSTED GUY IN THE WHITE SUIT says I only have one week.. well, he MUST Be right. Everyone, family starts to believe the guy in the white suit. And sure as sh*t.. he will croak.. people expect it– well, there in one person and that is my brother- whether HE Believes the guy in the white suit or his spirit- I believe he will go when he feels is the right time . It is sad, because he starts to feel like a burden- ya know still being alive having ppl take care of him just counting down the days according to the Dr…
Smiley says:
December 5, 2019 at 10:41 pm
My aunt was really sick the dr said for the fam to be there n we were but my question is he said she had a few hours to die how did he know that n she did die that day a few hours later how he knew is my question. Thank you
Kennedy says:
May 30, 2019 at 12:16 pm
yes that’s correct!
Kennedy says:
May 30, 2019 at 12:16 pm
yes
Brenda Adams says:
December 9, 2018 at 4:31 pm
my husband had open heart surgery and a year later he passed away with stage 4 cancer,what does this mean?
Shay Jones says:
December 6, 2018 at 3:01 pm
I feel it is good to ask,” what matters most to you?”
This was informative!
Janet J Stuart says:
November 24, 2018 at 11:37 pm
I feel that I am sicker then my doctors are telling me. I wish they would tell me the truth.
Tammy Akers says:
November 16, 2018 at 1:14 pm
I have a cousin that is 55 years old and recently diagnosed with brain cancer. The same kind that John McCain had. They did an exploratory emergency surgery on Sunday. They were unable to remove all of the tumor. Sent her to ICU until Thursday. At which time they sent her home with 2 to 4 months to live.
This article has helped me to understand many things. Most importantly that she’s on borrowed time already.
Thank you for writing this article, and for the study.
Kaye English says:
October 17, 2018 at 11:50 am
I am writing a dissertation re: benefit of telling a patient they have a given period of time to live. I would like to see any articles or any reading material that gives insight into this topic.
Theresa says:
July 14, 2016 at 4:11 pm
I am a critical care nurse now working in a medical day unit. Your article is very interesting and I truly feel there needs to be more of a focus on helping people prepare for death rather than leading them to believe in unrealistic time frames.
Andreas Laupacis says:
July 9, 2016 at 10:38 am
For a few years I have been working as a palliative care doc, and the issue of prognosis comes up with virtually every patient our team sees. This article touches on a very important but relatively rarely discussed issue – thanks for writing it, Paul. Here are a few comments generated by clinical experience, but not from a deep understanding of the literature on the topic.
Our ability to prognosticate is hugely affected by the patient’s disease. We are much more accurate with diseases that usually have a steady downward trend near the end (most advanced cancers) than those that have a more variable course (severe heart failure). I couldn’t tell what kind of patients were in Dr Selby’s study.
In palliative care we are increasingly seeing patients with advanced diseases other than cancer (heart failure, chronic obstructive lung disease, massive stroke, dementia) where the really important question about prognosis often isn’t the likelihood of death but the likelihood of a reasonable quality of life; and the question about treatment isn’t whether to start a new round of chemotherapy but whether to put in a feeding tube in someone 3 weeks after a severe stroke. I am struck by how often docs make definitive statements about the prognosis of their patients (“this patient has virtually no chance of a functional recovery”) when the literature suggests we should be a little more humble about our prognosticating abilities – see for example – http://www.strokejournal.org/article/S1052-3057(16)00037-9/abstract. Your article is a timely reminder of that.
In patients with advanced diseases we often have to provide advice about treatment decisions based upon our best guess of the prognosis, while recognizing that our best guess may not be super accurate (but is definitely better than flipping a coin). One approach I find useful (most of the patients I see are very close to the end of life) is to remind everyone that if we opt for a conservative approach now, based on what we think is most likely to happen, we can always reassess that approach if the patient unexpectedly gets better. “We’ll continue to give your mom the sips of food and water she can take, but we won’t put in a feeding tube because we think her likelihood of meaningful recovery from her stroke is low. However, should she unexpectedly perk up, we’ll reassess things and at that point we may decide a feeding tube is the right thing to do. “
Finally, I was a little surprised by this: “Dr. Selby is convinced that not much can be done to significantly improve the estimates.” One thing would be to recognize that as clinicians we systematically over-estimate prognosis and adjust our estimates accordingly. Also, doing a better job at prognostication is an important issue in clinical care. We should spend more time and money doing research to find ways that will allow clinicians to do a more accurate job at prognosticating.
Paul Taylor says:
July 14, 2016 at 2:39 pm
FYI:
Dr. Selby’s study included a board range of terminally ill patients who suffered from different medical conditions.Further to her point that not much can be done to improve the accuracy of the predictions……
She has been studying this issue for much of her professional life. When she started her work, her original goal was to improve the accuracy of those prediction.
But she is now convinced “I don’t think we can” for the largest group of patients – those who have about one-to-12 months to live. There are just too many unpredictable factors to take into account. “There are some things we can do to be more accurate, but not much,” she say.
So, with that in mind, she believes doctors should let patients know that they can provide only a best guess — “recognizing that it (the time remaining) is probably shorter than we think.”
Brenda williams says:
July 18, 2020 at 8:38 pm
So considered opinion is that the time given to a terminal cancer patient is often longer than expected for actual survival? Why not just tell them the horrible truth? My father was sent home from hospital to be cared for by his family as he didn’t want to go to a nursing home, we were told he had maximum of 6 months…. he died within 6 days, we felt cheated. Yes if we were told his death was imminent we would have been devastated, however we would have been better prepared.
Don Taylor says:
June 16, 2016 at 12:57 pm
A timely article. Thanks. I agree with Dr. Selby that doctors should be more pessimistic in their predictions, since accuracy quite likely is unattainable, and therefore irrelevant. A “best guess” range is a call to action for family members and close friends as well. They need a “best guess” to plan for the impending death of a loved one: to support the loved one emotionally, to have important last visits and conversations, tidy up loose ends and threads of relationships and so on. This is especially important for those who live a considerable distance from their dying loved one. The “best guess” also helps the family member or close friend who assumes the personal assistant role in coordinating visits and phone calls, etc., so that the loved one is not overwhelmed.
Gloria Vernon says:
September 5, 2020 at 4:07 pm
I feel when a person is told that that day had just passed away everything changes in the whole life I really don’t think people care
Author
Contributor
Paul Taylor is a health journalist and former Patient Navigation Advisor at Sunnybrook Health Sciences Centre, where he provided advice and answered questions from patients and their families. Paul will continue to write occasional columns for Healthy Debate.
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Republish this article on your website under the creative commons licence.
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