My husband has ALS. While diagnosis came in August 2015, the first symptoms came some 15 years earlier, when he could not let go of surgical tools with his left hand. At the time, he was diagnosed as having bilateral arthritis of the hands. As the t proposed treatment would take him out of practice for two years, after which time would have lost his patient base, his insurer paid of on his disability policies. We were able to travel, either by ourselves or with our kids.
Had he been correctly diagnosed with ALS at the time, he would have stayed home and felt miserable awaiting death.
Every case of ALS is different.
As Patrick Dennis's character Auntie Mame famously put it, "Life is a banquet. Most poor suckers don't know they're starving." Most people who are given "prognosis negative" won't engage with what life still has to offer in the time they have left.
12
I was told by a cardiologist at Mayo Clinic that my heart would give out within 3 to 5 years. That really freaked me out. About 2 years later, a different cardiologist said I could drop dead at any moment with no warning. Now THAT really plays with your mind. Walking through the house, I wondered, "Is this the last thing I will see?" or "Is THAT the last thing I'll see?"
Then I decided, to heck with it. If I drop dead, I'll be the last to know, so I stopped worrying about it.
It is now 9 years after the Mayo cardiologist prediction. I'm 66 years old and I'm still teaching kung-fu. And my heart, thanks to medication and determination, is up to 60% ejection fraction from 25%.
As General Patton once said, "They have their schedule and I have mine." :)
135
I'm a late stage, high grade ovarian cancer survivor of 20 years. The doctor who did the first surgery volunteered that I had maybe up to 5 years, most of them on chemo. Changed doctors. We never talked about survival rates. There was chemo and a 2nd surgery. Her name is Annekathryn Goodman at MGH. She is that good and so lovely.
27
It is my choice to know my prognosis. I want to know the typical progression with different treatment options. Then I can make my choices about how to respond and how to live my life. It’s not about collapsing or hiding when bad news comes; it is about living. My way. My choice.
27
Even in the last hours, predicting time of death is a fool's errand. I am a nurse. I remember working nights on a med/surg unit. One of my patients was dying. Her family was there. I just looked in from time to time. It was about 2 a.m. when the very upset family poured out of the room. I assumed that my patient had died, but when I checked, she was still breathing. It seems that the doctor had told the family that the patient would die in 17 hours - really!
9
Interesting how different people can be in their reactions to this. I personally am the opposite of the writers of this essay.
I would be so happy to be told when I'm going to die. FINALLY I can quit working, and focus on tying up loose ends. If I feel OK, I will do whatever I can do to have fun until I stop feeling well enough to do anything. And then I will just let go. I will not be doing any medical interventions....
My mother was in total denial about death. To the day she died in the hospital, even though she had been told her medical condition was terminal, she proclaimed that she would live forever! She was happy that way. That was her choice. I thought she was crazy at the time, but I understood that she needed to deny it to cope with it.
I'm so glad I have no terror of death and no need to deny it. I intend to embrace it with a smile on my face and die happy.
27
when hope dies and when the easy planning for the future gets stuck because of terminal illness and prognosis ;thats usually when we all give up. ......imho after losing my mom and sister and father and so many of my patients to terminal illness and not sudden death. The hope thing is so important.
7
My mother was diagnosed with Stage 3C ovarian cancer at the age 69. She never wanted to know about the 5 year survival rate or how long she had left. My sister and I researched the information but kept it to ourselves. My mother bravely pursued the most aggressive treatments and remained upbeat living life as fully as possible. She enjoyed every moment she had available with her family and close friends. She was even keeping up with extended family on social media a few days before she passed. I’m happy to say that she lived with her cancer for over 5 years when less than 35% with her diagnosis were expected to make it that long. I believe not knowing the survival rate helped to keep her upbeat and fighting to the very end.
15
To each his own. I have known people who were not told they had a fatal disease but were just ill. I remember a few who were in relatively decent health at the time but put off doing things they really wanted to do ( today’s bucket list) until they “got better!”
When they didn’t get better, but gradually worsened, and finally were told that they were dying, some were furious at the doctor and/or spouse. “If I knew how sick I was back when I still felt pretty good I would have never postponed all those things I wanted to do!! Now it’s too late. I’m too sick to ever do them! Why didn’t you tell me!!!”
Yes, some people “stop living” when they hear they’re dying. Others, after the initial “shock” realize they have no time to waste and want to live their lives to the fullest while they still can.
As for me, I want to know everything. I alone decide what I do with my life, good or bad. If any doctor withheld that information from me, I’d go after his medical license!
24
An end that comes suddenly seems to be a blessing.
But living in a state where the terminally ill can decide when to peacefully end one's life also seems comforting.
If religious beliefs did not prevent this option in most states, I believe the terminally ill could better enjoy the time they have left.
19
My mother tells a joke:
Doctor: “I’m sorry, but you only have three minutes to live”.
Patient: “That’s terrible! Three minutes? Isn’t there anything you can do?”
Doctor: “Well, I could boil you an egg.”
13
La hora ha llegado.
The time is now
Apocalipsis 40
4
Applying a similar logic to the death penalty, why do we make prisoners in the death house suffer so long awaiting the day of their deaths?
"If it were done when 'tis done, then 'twere well it were done quickly."
--- Macbeth
6
can you tell me where, at least?
4
Printouts? Did they come with discount coupons for Hotels.com? Everyone approaches terminal illness differently. Some people could not consider proceeding without all the facts; others don’t want a prognosis that could be a self fulfilling prophecy. Life is terminal, and lousy and scary and awful stuff happens. Yes, 3,000 people left for work on September 11th, saying “See you for dinner.” That we should all live every day as if it’s our last should be obvious.
14
“The greatest gift that one’s G-d can give you,is not to tell you when you will die.”
3
Time for last exits, your view to the rear -
Fistfuls of dollars, chug down your fear,
Your surgeon's the best carving away,
Gets fistfuls of dollars, dead as you lay.
2
Where's the link to this prognosis declaration?
3
One issue I haven't seen addressed here is the difference in having a partner or spouse with legal rights to manage your estate, survivors, even pets. I am a cancer survivor, but I am single with no surviving immediate family. Some sense of a prognosis was critical to me because I needed to be sure my affairs were in order and I wanted to have a sense of how quickly I needed to act. I actually believe that going through that process should be a given for everyone regardless of health status. When you start to think through what any survivor would have to go through to manage the remainders of your life, it's a gift to them to make sure things are organized to the greatest extent possible. If you have a spouse who will have things covered, you can spend your mental energy on travel etc, but if not, some attention to consequences is needed. Think of it as carrying an umbrella to hold off the rain. This is not an admission of defeat, just an act of kindness. I'll be damned if I'd see my dogs hauled off to the pound because I wanted to ignore possibilities.
25
I wouldn't even go for a biopsy. Doctor kept trying to get me to get it done with all sorts of pleading and promising the best MD to do it (it's always the best - cracks me up!) and finally called me at home saying, "You'll feel so much better knowing." How the hell does he know what I feel? Since I wouldn't follow mainstream medical advice no matter what the biopsy found I just went on with my self designed protocol. That was about 10 years ago. Can't say I cured myself because I don't know if the issue was cancer or not but I did research the dangers of biopsy and also decided I did not want to be in the jaws of the fear machine of the medical industry with whatever they had to say. They push and shove you into their world of biopsies, prognoses, "use by" dates ("you have 6 months"), support groups, and chemo and more. It would have had me permanently attached to my bed in depression to get involved with all that.
11
The problem with not considering your prognosis is, how can you possibly make a rational choice between treatment options A, B, or C, if you don't know what the likely effects of each are? Are you really just going to let your doctor decide?
9
For the next five years, she organized family trips to Spain, Japan, France, Italy, Amsterdam and Copenhagen.
Another apt title for a take on a cancer diagnosis ought to be, “don’t tell me how I should die”, as well. Most cancer tales I read must be sponsored by travel agents. When I got mine three years ago for an incurable kind of non-Hodgkin lymphoma, so what? I hate to travel by air or ship to places just as congested as where I already live and be forced to eat food complete strangers cook for me? No way, I’m happy just putzing around the yard, cooking my own fish and rice and going to school to teach special ed everyday for as long as I can and just hope I don’t die in agony.
23
I printed a copy of my wife’s last CT scan report. She read it, then wished she hadn’t.
6
Do not overlook the fact that the doctor is your employee. He/she should follow your wishes except if there is a legal or ethical conflict.
6
My father in law insisted his doctor tell him 'the truth' but later confessed to me that he hadn't had a single happy day since that particular visit.
6
The only prognosis doctors can say with 100% certainty is that we're all going to die.
7
My experience is that some doctors won't give up, no matter what. They treat the disease instead of the patient. To me the FIRST order of business if a patient is diagnosed with a disease which will take their life is to have the conversation that this disease will kill you. No doubt about that. How long? Many factors will play into that? That being said....I want to know what you are willing to accept knowing that death is inevitable here....breathing tubes, feeding tubes, pain relief even if it will shorten your life....etc. Then, the final conversation that I would have is how do you want to live the rest of your life? What do you want to do? Pretty impossible to travel if you are vomiting and have diarrhea from chemo, for example. My father had cancer of the common bile duct. The oncologist came to his hospital room after he got the diagnosis and introduced herself. My father said..."It's been a pleasure meeting you". That was that. And he went home and waited for 3 years to die like it was a train scheduled to enter the station and he just sat on the platform, waiting. Not the way I would do it, but it was his life. Not his wife's. Not his childrens'. And certainly not his doctor's. Far too many people only have the tools to make the decision when the gauntlet is sitting right above their eyes. Hard to make peace with your life and feel good about the decision when it's made with a gun pointed at your head.
6
no one here gets out alive -Jim Morrison (dead at 27)
6
There is but one assurance I can give; a guarantee one hundred percent certain. Nobody gets out of here alive. Not a single one. So live your life as best you can, and as you see fit. And when it is time to go; go.
John~
American Net'Zen
11
Thank you, thank you for this information.
2
I told my doctor that I would prefer to die of unknown causes.
11
I imagine a cartoon in which a doctor is looking at his phone and says to the patient, "According to the algorithm, you ........."
1
Having just lived through the death of my spouse of 48 years, I can tell you that knowing the cancer would kill her within 2 1/2 years was not information that bettered our last years together. Both she and I spent a lot of time trying to disremember that fact until it was too obvious to ignore. We could have spent much of that time enjoying the days rather than staring death in the eye. When my time comes, I'd like it to be a perfect surprise. Knowing did nothing to improve the last years of her life, and only made every cough an sniffle another worry.
80
@Patrick Stevens
My condolences. I just experienced losing my spouse of 58 years. It's not easy. He was a physician and I am a nurse so we knew better than to trust projections of life expectancy which are, after all, based on populations and therefore say nothing about individuals. All we have is the time we have.
41
I've been a hospital pharmacist for 43 years. I was there before they had mamograms, colonoscopy, genetic testing, etc. I just marvel at the American obsession of trying to live forever. We want to be tested for EVERYTHING with this ridiculous idea that it will improve or even save our life, when the truth is just the opposite.
I see all the "survivors" out there marching for a cure, thanking God and the health care system for saving their lives, when, in fact, for 90% of them, they would have lived just as long or longer without knowing they had this or that. And the quality of their lives, and their family member's lives, would have been IMMENSELY better without the knowledge and anxiety of feeling like their body has a time-bomb ready to go off at any moment, for the rest of their days.
I see the folly everyday and it has made me refuse to even get blood work or see a doctor even once a year. Colonoscopy? Don't be ridiculous!!!
There will be a hue and cry of outrage from all who are convinced otherwise (especially those in the Medical Industrial Complex), but I have 66 great years of personal, medical-unawareness, in the bank based on 43 years of seeing life and death acted out in real time daily, on the job. Enjoy the life you have and look forward to the infinite possibilities that await after that last breath. You're making God laugh with the futility of your efforts.
82
@judgeroybean
Colonoscopy is not always futile. Many people were saved from early death by removal of cancerous polyps, tumors or even parts of colon.
28
@judgeroybean
I'm with you on this. I wish there was an information bank on the number of cancer survivors who refused the rigors of cancer treatment. I have read of a number of cases of folks with a couple of "years to live" who are alive and well a decade later, having declined treatment. This may be rare, but there are no reliable records on this at all, so this may not be as rare as folks think, and we could learn a lot from these survivors. I've had two friends who effectively died of their treatment (compromised immune systems), not of cancer. Would they be alive today if never treated with chemo or radiation at all
24
@MariaSS There is no way of proving they would have died without those procedures. It is impossible to predict but it doesn't stop people from using it as evidence of proof. It isn't. It's a theoretical. You say "many people" - but this is not quantifiable - how many, how do you know, and what is your proof they would be dead?
9
i understand the point of this: people should have a choice to tune out information which is not helpful to them.
But we still have much more trouble with getting information out of many doctors, and for many reasons. They must be clear that they owe their patient, and the patient's chosen advocate, honest responses to questions. Not perfect predictions, but honesty.
I worry a bit about giving a message which can be misconstrued as giving permission to withhold insight. As the attempt to envision someone's individual trek through treatment to the end of life certainly does require not only facts, but art - - the doctor should exercise that art to help the patient to understand the road ahead as best possible.
2
If someone has no final concerns or issues to deal with this is easy to do. I have 2 life limiting diseases, I live alone and definitely would want to know if the end is near.
8
My husband died almost five years ago from a very aggressive pancreatic cancer, six moths after his diagnosis. He wanted to know how long he had to live so after evasion from his doctor he asked “Will I see another spring”. And the answer was No. my husband was able to find peace.
12
Life expectancy of all kinds represents half of all of the people counted. It’s not the product of a syllogism. The actual time that a person will live can be from far less to far more of the expectancy value. The further information useful for planning are the percentage of those who live longer or shorter by various amounts. Not wanting to know is part of dealing with a frightening situation by looking away, not confronting a terrifying thing. People who sink into terror cannot appreciate the time that they remain alive. But ignoring the likely time left It does not change the situation.
3
In 1993, at the age of 41, I was diagnosed with Kidney cancer. My right kidney was removed and I was seen by my nephrologist/surgeon for the next 10 years and there was no return of any cancer. Well in 2013 it was discovered I had a small tumor on my brain. Shortly after that I had a craniotomy to remove a walnut size tumor from my brain. It was kidney cancer. Next I has a PET scan where they discovered a spot on my lung. I had the middle lobe of my right lung removed in early 2014. That tumor was also kidney cancer. I've been taking a new chemo drug that has kept me healthy and cancer free, until a month ago when during a regular MRI it was discovered I have a new tumor on my brain. I'm scheduled to have a craniotomy on July 8. I expect a full recovery just like in 2013.
I think one key is maintaining a positive attitude, another one is having the best doctors. A healthy diet and exercise also played a very important role.
17
As a glass half empty kind of person, hearing my prognosis is a good thing. At worst it would confirm my gut reaction. Otherwise it would be a pleasant surprise. I'm also not into doing anything to live longer so I would want to have data to decide which treatment I would want.
If I didn't have long to live, I'm quitting my job. I'd like to enjoy the life I have left and that doesn't include working 7 days a week.
10
The second time (age 25) I had my palm read and a look at my life life provoked shock at its shortness, I became convinced I would die young. I survived the subsequent risks I took, succeeded moderately in multiple fields, and eventually got too old to die young.
If offered a Medical “how long” prognosis now, it will add to my calculations, but I’ll take it with more than a grain of salt.
1
I have been terminally ill for almost 30 years now. At 93 years of age I have lived beyond my wildest dreams, and the only thing I have to worry about is whether my savings will last until those inevitable final days. And whether or not I can remain independent, drive my own car, cook my own food and keep my own home clean and comfortable. Cancer? yes I have lived through breast cancer, ovarian cancer, have been diagnosed with osteoporosis and survived multiple falls with broken bones each time. The only threat I hate with a purple passion is more time in a hospital and going through the recovery process yet again. God has been good to me, I hope I deserve it.
196
@Mariposa841
Another article might fruitfully explore what elderly people warehoused in the charnel-house wing of a luxury age-in-place facility are told about “how long this will last.” From my observation, the goal—now that patients are too old to actually get “well” —seems to be to preserve them as a revenue stream indefinitely. Cheerfully attended suffering is still suffering.
14
@Mariposa841 Neither dying nor living is as easy as it's made out to be, huh?
My motto in life is "Get old or die." When someone says they're not getting older you can rest assured there's a lie somewhere in all of it. The very fact of being able to say you're not getting older should tell us all you're lying about it. (I'm definitely not call you a liar, just anyone who has ever stated they're not getting old(er).) ;-)
6
@Mariposa841
God is with you, sure
4
My best friend's husband was diagnosed with stage 4 of an aggressive cancer. He was an aggressively optimistic, live-for-the-moment kind of guy, so he clearly preferred not to hear a prognosis. My friend, needing all her ducks in a row, got that privately. He lived fully and vividly till the last couple of weeks, dying a day after entering hospice. While his wife will be picking up the pieces in the aftermath of a wholly unprepared death (no passwords, no lists, scattered contact addresses, professional equipment, chaotic financials, etc.) for the next year, she has the solace of knowing she helped him live the fullest, most joyous life he could have had. She understood that --for him-- not knowing the prognosis gave them more, and better, time together.
59
My husband was diagnosed with a particularly aggressive malignant glioblastoma and underwent surgery immediately following. The neurosurgeon said he was able to remove the entire tumor. That's meaningless with this type of tumor, especially given my husband's age. During our first visit with his oncologist post-hospital discharge, the doctor volunteered that in his entire career, he had only five patients who survived this kind of cancer. Neither of us had asked about his chances of survival or any prognosis; I knew the grim statistics before the surgery, and I think my husband was in denial. While I don't believe doctors should sugarcoat the information they give to patients, I felt that this was unnecessarily cruel and harshly delivered.
Since that very moment, my husband has lost his will to live. As his sole caregiver, it has been an additional burden to have to deal with.
114
I have stage IV cancer and was advised to get counselling for myself and my children to deal with the blow of a terminal diagnosis. While there is a very good medication for my type of cancer, it doesn't work at all for a small subset of patients, and works well for about 2 years for another, larger subset. When the medication fails, those patients take other medications with strong side effects that are only effective for a matter of months. There is a third, smaller subset of patients for whom the medication works for years; they can lead a normal life for as long as the medication works, which could even be as long as 20 years. I did not know which group I would be in. Thankfully, my mutation status revealed I was not in the first group. When asked about my prognosis, my oncologist said "Years." But how many, I wondered? After extensive research on all aspects of my disease (including survival stats, which I wanted to know about), I discovered there was a wide range of possible outcomes for patients with my stage of the disease. So I vowed to push my diagnosis to the back of my mind and also to be mindful of it every single day. It is a tightrope walk: trying to be fully in life, living the normal, everyday kind of life I would have lived without the diagnosis (no bucket lists for me), while reflecting daily on my own death. I am so grateful for this awareness of the preciousness of life. Oh yeah -- I just celebrated 8 years with the disease, and I'm feeling great.
183
@precious Good for you!!!
7
In 1983, my mother was diagnosed with stage 3 breast cancer that metastasized into all her lymph glands. Her oncologist told her that she had perhaps 6 months to live. My mother found a different oncologist had a radical mastectomy and about a year of chemotherapy, followed a macrobiotic diet, and well here we are in 2019 and she is still alive and cancer free! Getting that first diagnosis spurred her on to find a more optimistic surgeon who would steer her to a top doctor for her chemotherapy (and no, we were not wealthy...my mother was a divorced social worker with good health insurance and little money!)
82
@Hexagon
Initiative helps. Great news!
5
When my father was diagnosed with lung cancer at the beginning of 2002, he got nothing but wishy-washy answers from his doctors. I called a colleague, an oncologist who left practice to go into research (it got too hard, watching so many of his patients die) and described what Dad's diagnosis was. He said "6 months at the most". He was spot-on correct.
Dad was sanguine about dying because he'd always say all life is finite, and he was in his 80s. He just wanted two things: He didn't want it to hurt, and he wanted me and my siblings to take care of Mom, which we did.
Telling patients how long they have is very different for a practicing doctor. She/He can be sued, they can raise false hope, or shoot down a positive attitude. My colleague had no liability and didn't know Dad, so he could just give me his best judgement.
48
My mother was 91 and, after having endured many surgeries she was diagnosed with untreatable congestive heart failure and put in hospice. She lived for a year and a half reduced to 85 pounds. I'll never forget the day she looked at me from her wheelchair with oxygen tube in her nose and said, "it's too bad you have to see how you're going to die." It has been hard to shake that...How it will affect my life, I don't quite know yet but I don't want to be 91 and die like she did.
15
My husband is in his 50s and has an aggressive bladder cancer despite being in excellent health. This disease usually strikes older men, many of whom have various comorbidities, so all the statistics re treatment outcomes and survival don’t have much meaning in his case. Realizing this, we skipped the “how long?” conversation with his doctors and just focused on pursuing sensible treatment, actively supporting his health, and enjoying life while keeping in mind that he may not live long. So far it’s working.
45
@Darcy
Good for you all!!
3
Not everyone gets the option of a prognosis. My mom died of a cerebral aneurysm when she was 41. Other people in my life have also died unexpectedly - of another aneurysm, a heart attack, meningitis, accidents. As a cancer survivor who also almost died in an accident, I've pondered whether I would prefer to die suddenly or with some warning. I still haven't decided.
It seems to me, though, that for the typical terminal patient it isn't a choice between ticking off days against a timeline and taking fun family vacations. Rather, it's weeks and months of grueling treatment, followed by agonizing decisions as to whether to try another grueling treatment when the last one fails. In those cases, shouldn't the patient be told the odds?
88
@Katie
A well thought-out and sensible and HELPFUL piece.
Thank you very much
Paul
14
@Paul
Talk it over with your doctor. Then get a 2nd and maybe a 3rd opinion. It helps also if you believe in mortality. For all of us, this is a temporary situation.
4
Eleven years ago I was diagnosed with Stage IV breast cancer. My adult son asked my oncologist how long he thought I might live. The oncologist said he really couldn’t say with any certainty, that there are good medications and new ones being developed. Two and a half years later after treatment with a hormone blocker the cancer had disappeared on scans and in blood work. By that time I had learned a lot about my disease and had a pretty good idea how dire my future had looked. I asked the doctor what he would have said if he told us what he really thought. He said he thought I might have a year to live. In retrospect I was glad not to have had his candid opinion at the beginning of treatment. I now approach the idea of death with curiosity and wonder and each day with gratitude for the gift of a much longer life than I expected.
Should doctors deliver a dire prognosis? I would say generally yes but only with great delicacy. I heard horror stories in my support group of doctors mishandling the information. One woman reported being told they would know for sure at her autopsy. Another was asked why she was worrying about something when she would be dead anyway in six months.
The best doctors will get a sense from their patient what is the right amount of information to disclose. My oncologist gave me hope which is crucial.
65
@Susan Piper
HOPE is everything.
2
I studied with a healer in California who is known for working with people with metastatic cancer. The only reason he gets patients is because of his results.
He told me that patients will call and say, I have been told that I have two weeks to live.
He say, OK, make an appointment to meet with me in two months.
The first thing we must do is break the curse.
As a physician who is often seen after patients have not gotten satisfaction with other doctors, I am often confronted with patients who tell me how they have been labeled and told that their lives are now limited, their days numbered.
Working together I find that it is possible to help them rebuild and live healthy, productive lives.
It is not fair to people in very compromised emotional states to tell them that they will no longer have much of a life, if even that.
This inevitably leads to breakdown of the immune system which cannot deal with the stress such a curse produces.
These are labels and nothing more.
People wearing white coats, the high priests of "scientific" medicine, pronounce them decrees but they are nothing more than opinions.
I am sure that many of these physicians believe that their opinions are truth but they aren't.
I have had patients burst into tears when I told them that I did not agree with the curse put on them. They then began the journey to healing and recovery.
A lot of it begins with changing negative beliefs and attitudes which these "diagnoses" support.
27
@simon sez
Just to tell you that if you have cancer, it's doubtful that if you have only two weeks left to live you would have the energy or physical ability to call anyone. by that point in time you'd have to be pretty sick to face such an imminent death.
Perhaps the doctor you mention knows this and that those patients calling him are telling him an untruth in hopes to getting an earlier appointment rather than conveying accurate information from another doctor.
4
Then there’s my niece’s FIL who died today, just 10 days after a diagnosis of Stage 4 metastatic lung cancer. Do you actually think a positive attitude could have turned that into 10 weeks? A positive attitude can’t hurt and may help but let’s not put it on the patient to “buck up.”
10
WE all live to die, we chart our own journey and make our own decisions. The medical community is not really a partner in this voyage, there decisions are based on how much money you have to pay the extensive medical bills. So many unneeded prescriptions and medical procedures.
Knowing that medical information, chart your own course and faith will guide you during dark days not tainted medical mumble jumbo.
8
It’s a great idea to ask patients how much they would like to know about their prognosis.
Full disclosure is today’s medical standard - no more hiding the truth from terminal patients. Honesty is important but has its limits. I’ve read articles about children with terminal cancer, as young as 6 or 7, who are told they’re about to die. The stories are about how brave the kids are in the face of death, etc etc. I find those stories horrifying. No child deserves to know such a thing. I would lie to any child until the last breath about their prognosis. They deserve that mercy, and have nothing to gain from ugly truths.
39
@Name I agree full disclosure may not always be appropriate, but you are very wrong that it is always right to lie to children. Read "The Private Lives of Dying Children" to realize the impacts of NOT telling children, who often want to know and often do know but feel they have to protect their parents emotionally and can be a burden.
For children, as for adults, it is often - but not perhaps always - better to know. And for both HOW that is handled is incredibly important.
5
@Name
Agree. At age 12, my nephew with a malignant brain tumor heard the radiologist say to his mother over the hospital bed that her son's chances of living were "only 50-50." She hadn't asked. She had him step out of the room and gave him the riot act.
Her son, luckily, is alive and very well at 50. Perhaps the radiologist was part of his recovery, so his insensitivity on this matter can be pardoned. But 12 is too young to hear that kind of news in any case, particularly when an adolescent brain is not mature and in his case the brain is already somewhat compromised by radiation blasts.
2
That's the writer's personal opinion for himself.
1
I’m lucky to be of that generation who has opted out of the blizzard of information, the complaints of people who claim they have no time because they have been abused by society saying “you must do this, work out like this, be insoired by yet another insipid treacly story, be influenced by influencers,”. In other words, giving up everything that’s a hallmark of humanity, free choice.
I’ve already decided if faced with a terminal illness, I only want palliative care.
1
Perhaps knowing more can sometimes serve us less. Sometimes.
But many people benefit from knowing the rough parameters of their prognosis. They have things to do: arrangements to be made regarding disposition of their estates, fences to be mended with friends and relatives. A time to say goodbye.
We all benefit most from a sense of autonomy over our lives.
Leaving a mess behind does not serve anyone well.
4
I very much want to know when I will die. It would make planning the rest of my life so much easier.
I fully support all laws that permit assisted suicide, and all efforts that enable those who are sick to end their lives with as little pain and as much grace as is possible.
7
Personally I like to know. Maybe I’m a control freak, but I want to be ready - not in the sense of Wills or Power of Attorney etc, that’s all easy to fix, but ready to brace myself and take a last long look around knowing everything’s about to go black. I don’t have that luxury (one Doctor’s estimate, um, expired three years ago), and having a great big sword of Damocles hovering over is not fun.
Let me be ready and comfortable and not “Oh no, wait, no not now, I’m in the middle of something, I was ready three years ago but now I’m kinda enjoying myself with these unscheduled years and can’t it last a bit longer...?”
25
@Mat
You should take that look around most every day, regardless. Also, a little bit denial can go a long way. It was the motto of my cancer group.
4
Hey let’s face facts we are all going to die. Some of us have the luxury of a timetable or some idea of the time of their passing.
To die with dignity is the goal we should all be concerned with.
I hope to be able to carry out my own plans when the time comes.
4
If you don’t know your average prognosis, how can you judge when to stop treatment and do hospice? Do you wait until you are so sick you land in the ER? How do you judge how aggressively to be treated even then? The ER doctor will not have time to counsel you. We teach our children how to die- hopefully with courage, poise and dignity. Don’t be the one who instead demonstrates fear, confusion and anguish.
3
On January 30 this year a biopsy showed that my husband had glioblastoma, the same tumor that killed John McCain. The surgeon gave him 3 months. My husband's mantra was "I WANT TO DIE AS SOON AS POSSIBLE. He did on March 30 with the California End of Life Option Act. He took control. He had autonomy. These kinds of laws must be adopted everywhere.
13
I find this statement disingenuous as a physician.
"It’s not clear whether the Prognosis Declaration will ever find its way into standard medical practice. But the fact is it belongs in the hands of patients rather than doctors, anyway."
This statement undermines the empathy & care, that majority doctors practice with.
My colleagues and I deal with cancer & morbid diseases daily. All of us have different ways of approaching it.
These are a few questions, I ask routinely:
- Would you like to know the details of your diagnosis? What does it really mean?
(you won't believe how many times, I heard, no doc, you take care of it, I don't want to know more.)
- Would you like to know about the prognosis of your disease? It would be based on current data about how much time you may have left?
( A lot of patients say without pausing: No)
- Would you like to talk about palliation?
- What do you think is going to happen after we start treatment? What are you hoping for?
(when they answer, I ask...)
What if your body doesn't respond, you may belong to that%age who don't do well?
( I usually get pretty clear-cut answers at this point. I make sure spouses/families listen)
But, three things I do, for all:
1. Would you like me to be blunt about this?
(Majority say, please don't sugar coat it for me!)
2. What do you understand by what I just said?
3. Please, ask me questions about any & everything, we just discussed.
I learned all of above, by watching, interacting with my patients.
70
Ash, I do not understand your discomfort with the Prognosis Declaration. As a physician who treats your patients with empathy and care, based on an understanding of their individual needs and preferences, it would not change anything that you are currently doing.
But as you said, "all of us have different ways of approaching it." And no one can predict what approach their future doctors will fall take. It still strikes me as patronizing to always assume that "doctor knows best," even if in the majority of cases that is true.
6
A mentally competent adult should be granted the dignity of deciding for himself or herself how much they want to know.
8
This piece reminds me of one I heard (and never forgotten) as a medical student 50 years ago.
At a ground rounds conference at a prestigious medical school where an interesting case was typically presented to a large audience of students,
Faculty, and house officers, I.e. interns and residents. The particular case presented was about a young man diagnosed with advanced Hodgkin lymphoma. After the presentation the patient left the auditorium and the Chief of Medicine took the floor to lead an academic discussion. When that part was complete, he asked the audience if anyone had an opinion about whether the patient should be told what hehad and that he was doomed. An eager intern waved his hand and blurted out that he thought the patient should be told what he had and that he was going to die. The professor thanked him and angrily told the intern to collect his things, get out of the auditorium, and that he didn’t ever want to see him in that hospital again. Ever. The young intern slinked to the rear exit of the auditorium mortified. As he reached the rear doors, the professor called out, “okay doctor, you can come back now. I just wanted you to see how it feels to hear some really bad news!” A lesson I have never forgotten.
90
No one gets out of this life alive. While that seems like a trite and obvious statement, it goes to the heart of this fine article.
I happen to agree with its premise. I do not want to give a physician the gift of predicting how much time I have left on this planet. I know intellectually it is a finite number of days, of heartbeats, of experiences.
But for me, the vibrancy of my life is much more important than the set number of days I may have left walking the earth.
I have often told my three adult sons that when my time is up, I am hoping right before I enjoyed a full plate of pasta with tomato sauce, seen a great Hollywood Classic like Shane or Casablanca, and had the chance to tell them I have always loved them.
11
I understand that prognosis is an informed guess. Nevertheless, I would want to know it. Otherwise, I would fret and ruminate. For me, it's better to have some kind of idea rather than not knowing at all.
5
Prognoses for an individual are worthless. Actually worse than worthless as no one knows, despite how obvious it seems, exactly when one will die. I have had patients live two years that I thought would be dead in two weeks and I have had patients die in two weeks that I thought would live for two years. There is a definite down side towards giving a prognosis to a patient as illustrated in what follows. A colleague of mine told a patient he had operated on with pancreatic cancer that she had six months. She then made arrangements and sold her house and distributed income amongst family and friends. Two years later she is alive and well with no sign of cancer. My friend was sued for wrongful life. Predictions of life and death are best left where they do the most good, in those studying and acting on this information in scientific trials.
4
As a hospice nurse I took care of a lovely gentlemen with end stage lung cancer that had stopped responding to treatment. He accepted the diagnosis without rancor and adjusted his life expectations so that he would have proper care givers to attend him. I visited him weekly for many months. His condition did not deteriorate and in some ways he seemed to be doing quite well. He finally was rescanned, and found to be cancer free. Im not a radiologist or oncologist so will reserve judgment about his initial prognosis that gave him less than six months to live. We celebrated his hospice graduation with quite a bit of jolliness. Whenever I have patients who are oppressed by their prognosis, I tell them this true story.
18
This is not meant to offend people who are suffering. But since Aug 17, 2018, I have been miserable over the diagnosis of one of my mated pair of dogs. I took her to the ER because she had eaten something that concerned me. The vet checked her out and said she was fine but she struck me as incompetent and I insisted on an ex-ray which revealed a small mass that had nothing to do with why I brought her in. A few days later the mass was biopsied and I was told malignant. That without surgery, she would die in 3-6 months. My regular vet told me the surgery would be painful and would only buy a little more time and she recommended against it. She told me she had seen dogs live comfortably for 2 years. My dog has shown no symptoms 10 months later and I take her in for a wellness check every 8 weeks. When her symptoms begin, I will euthanize her and deal with her heartbroken mate who will die of sadness. My quality of life has degraded over the last 10 months knowing that not only will I lose one best friend, but my other best friend who has been with her his entire life will suffer.
7
@Eli
Veterinarians are particularly egregious in being quick to jump to the euthanasia solution. I had a terrier with kidney failure who was given a prognosis of three weeks maximum. With change in diet and hydration she lived quietly but comfortably another year and a half, to the ripe old age of eighteen.
3
As one who is pro-life, I’d argue the same about the point at which one is going to live.
1
“I do not want to read, hear or know the time of my prognosis.”
Good for this woman!! Too often doctors tell patients how long they have to live. Patients believe their doctors and put themselves through torture.
Thinking positive many times does have consequences for living a longer life. No one knows for sure why this occurs. Researchers believe that positive thinking about aging can increase a person's will to live, making him or her more resilient to illness and more proactive about health. Another explanation is that mental stress of aging is lower for people who have a positive attitude.
“In order to carry a positive action we must develop here a positive vision.”
— Dalai Lama
6
Nobody can know how they will react if they were in such a dire situation and patient wishes should always come first.
11
More interesting to me than a prognosis of time, is a discussion of treatments and their abilities to deliver more quality time. I'm not interested in invasive, expensive, debilitating treatment for an illness that will ultimately kill me. I want to be made as comfortable as possible but prolonging my life by continual surgeries, chemotherapy, and drugs with horrible side effects, is not what I want. I hope I'm able to make that choice. I have some helpers in my life who know this and I am counting on them to honor this wish if I cannot.
23
We are all terminal, we just debate with fate (one-sided, fate doesn't talk to us)
Last year, on St. Patrick's Day weekend, I was on my way up to Boston on Amtrak to cook corned beef and cabbage for my best friend Liz and a bunch of her family and friends. She texted "dont come" but I was already on the train. She had collapsed and was on the way to the ER, where she would be told that she had stage 4 cancer metastatic to her liver and would shortly be dead. (When I got there I read her chart, that's what it said.)
She's still here. We had a great St. Patrick's Day this year. She found the doctor who told her she was going to die on Linkedin, of all places, and wrote him a note about hope and love and how to talk to people. He didn't respond.
17
While I would not disagree that the Prognosis Declaration is a mechanism to support a patient's autonomy - choosing NOT to know things - it also clearly undermine's a patient's autonomy through choice. "I want to know nothing. I want the doctor to make all of the decisions. Tell me nothing." Sounds like a surrender to the medical patriarchy in a desire not to face reality.
1
The article below is a good counterpoint to this editorial. In my practice, I ask patients whether they want to hear information " straight up in a shot glass, or mixed with lots of cream and sugar." Then I ask if they are sure this is what they want. Reinforcing a patient's autonomy and the control of information they and thrir loved ones receive, about a medical diagnosis that was out of their control, is exceedingly important in establishing rapport and good care. In my experience, 98 out of 100 patients want to know their prognosis, and appreciate hearing the optomistic, pessimistic and realistic views, as well as realustic information as to the uncertainty that exists in prediction despite the vast amount of information that is available.
The Uncertainty of Prognosis in Cancer: You Don’t Have an Expiration Date
No one knows how long any one person will live.
By Nathan Pennell, M.D., Ph.D
https://health.usnews.com/health-news/patient-advice/articles/2015/10/29/the-uncertainty-of-prognosis-in-cancer-you-dont-have-an-expiration-date
12
I am definitely a "tell me everything" kind of patient, BUT I also know doctors are often wrong about estimating the amount of time a patient has left. Sometimes, people do die "on schedule," but often they don't. Anyone who followed Stephen Hawking's life knows how spectacularly wrong estimating a person's longevity can be based on their diagnosis.
The length of a person's life matters, but the quality of life matters more. Having had several surgeries, I know I can tolerate a few days or weeks being mostly helpless and in pain. But what gets me through those times is knowing I'm healing, knowing I can get better. Realistically, the ability to "get better" will not always be the case.
9
As a stage 3 ovarian cancer patient of twelve years, not knowing what my prognosis was or is has preserved one profound and comforting piece of psychological normalcy- not knowing when the end will come.
10
Quite a few years ago, I was recovering from chemo when I developed encephalitis. After nearly two months in local hospitals, my doctor suggested that I be admitted to the university medical center in Little Rock. After some time there, I felt better and was discharged; it wasn't until much later that I learned that the move was to obtain tertiary care. My family was enraged that we hadn't been told but my feelings have always been that, had I been told I was going to die, I most likely would have.
8
@Nancy Deyo
Do you really mean to say “tertiary care” which is care at a higher level medical facility...maybe you mean “palliative” care which is symptom control? It would be upsetting to be moved to palliative of symptoms if you were not informed of this.
2
There's no such thing as knowing you aren't going to die.
The issue is whether or not we wish to know how and possibly when. We aren't living more fully by pretending we aren't going to die. The awareness of one's personal and individual mortality does not unjinx us or demystify and defang death. We don't live better because we fear death but because we love life. Death is part of life and it something to love. "What am I getting?" vs. "What am I losing?" Instead of "Where have I been?" it's "Where am I going?" The fear isn't about losing something, it's about living more courageously. And it's not the kind of thing people who are hooked into the "Consumer Culture" care to think about, is it? For them, it's about getting and having, not giving and being.
6
This article was deeply disturbing to me. Reason being is that about 8 years ago I found out I had advanced lung disease (from an industrial exposure) and upon reading up on what I was up against found out the news wasn't good. However, what I did was quickly become my own advocate and even late stage I'm thriving due to being extremely proactive. I'm still physically active (relatively), trim, fit, am on NO medications, eat only real food, still not on oxygen and am never sick. I don't cough. My doctors can't believe how well I'm doing. If I didn't know and understand what was going on I couldn't confront it. I've way, way outlived my "due" date and only done so because I knew what I was facing and did something about it.
16
@2mnywhippets
I just love that. Some people think death is nature's way of telling you to slow down, but I'm glad some hear that knocking on heaven's door as a wake up call. As long as one is healthy enough not to have to drag themselves around self negligence is the way. Later, it's off to the pharmacy for the gifts of science.
Some small help to might have been your too many whippets.
Bless you, whether in the name of God, or your maker the mad molecule.
2
With every medical prognosis is the assumption that we won't back out of the driveway into the path of a 40-ton semi. Or, break our neck falling down the stairs. Or, be murdered in gun violence. Or, just never awaken from the last sleep. Lights out.
I'm afraid we imprison ourselves in the WORST kind of suffering in our frantic attempts at kicking the can of mortality down the road. In a pretty spectacular irony, we've now granted ourselves terminal uniqueness in believing we stave off death at ANY cost. I made a decision long ago that I'll never live in such a prison.
The point is to live every moment as if it's our last.
21
Forty plus years of clinical practice leads me to a few conclusions:
1. The best attitude for a patient to take is to live each day as his or her last, wasting no time, continuing to be in the world as fully and as long as possible.
2. The more fundamental question is not an amount of time but the nature of the approaching end of life.
3. Patients fear death less than they fear being abandoned by their doctor and their families and friends.
4. Patients will tell you what they want to know and when they want to know if if you just stop, put down the chart, get up from the computer screen, sit with them and just listen.
5. All well-trained doctors are palliative medicine specialists whether they know it or not. Frances Peabody's lecture on the care of the patient sums it up best: "One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient."
26
When my mother was dying from lung cancer, the doctors declined giving any kind of prognosis other than that the treatment available was palliative and focused on symtom relief. Cure was not to happen. I googled, looking back maybe I shouldn't have, but I needed to know what kind of time frame we MIGHT be looking at. She lived both longer and shorter. Longer than the statistical prognosis for her illness, shorter than expected with a rare kind of metastasis. She found comfort in not knowing as I never told her any of what I'd found online. Also, the doctors were sensitive enough not to say anything that she so emphatically signaled that she did not want to hear.
All in all, for whom is prognosis offered? While it might be a push for the patient to live as much as possible, some might just resign to the fact that death is coming and not do anything.
7
I have mixed feelings about this. As the article says, when doctors do offer a prognosis, they often overestimate how much time is left. This is probably more common when we’re looking at weeks and months, rather than years. In my experience, if everything is happening quickly and the doctors say “months”, family members should probably brace themselves for weeks. If you don’t, it makes the loss harder.
And nobody should ever learn their prognosis through the printouts they give you when you leave the doctor’s office! Please tell me they’re teaching this in medical school....
10
One of my family members was told she had 6 months to live. She acted accordingly, and upended her life. She lived 4 1/2 years after that diagnosis.
8
For me, there are many unpalatable things about the medicine today. The main one is the slave/master relationship between physicians and drug companies. But that's a different conversation. The one germane to this conversation is the concept of doctors "giving" patients time, as in "The doctor gave me 6 months." This sort of statement belies the fact that time is not for doctors to give or take. However, if the patient wants to know the doctor's best guess, she should be apprised of how others in similar circumstances have fared.
7
@June M; that 'giving' comes from the patient, it's not a term a doctor would use.
11
The mentality is very much supported by the medical establishment, even if the particular words are not be explicitly used. Doctors have a tendency to a God complex. Of course there are exceptions.
2
@June M; it's what they would have said, if they had said it.
stereotyping is a common problem, too. we see groups demeaned because of the actions of some, and the tendency of others not to be able to see the larger picture. we call it 'sexism, racism, etc'. 'the medical establishment', 'the jews', 'the blacks' etc turn out to be heterogeneous groups.
fwiw, as a physician i never was approached by a drug company, was never offered free stuff, etc.
when a doctor says 'we see survival somewhere between 6 months and 2 years with a small percentage of remission', this becomes 'the doctor gave me 6 months'.
1
As a physician I would prefer my patients to receive as much information as possible with the understanding that we are not perfect at this at all. Medicine is still not a precise science as yet. For a patient, there are many cultures especially Asian, who prefer not to know the prognosis. They strongly believe that knowing prognosis shortens lifespan. This goes contrary to some published data which suggests in patients with terminal cancers, hospice patients do better. This maybe because they had fewer complications of chemotherapy. Nevertheless they were given a prognosis of less than 6 months,
9
I am 70 and when I get word of my terminal illness I will want to know everything I can because I am inquisitive by nature. I won't rely on any particular Doctor's analysis but rather do my own research. Why? Because the information is readily available and I am capable of critical thinking. I will also refuse treatment other than some pain medication if need be. My thoughts in my dying days will be about my children and grandchildren and how I can show them how to die with courage and a generosity of spirit just like my parents and grandparents before me..
36
Doctors can’t predict the future. I know, I’m a doctor.
26
@Alex, then i don't want you as my doc.
or for my english teacher.
i can
"say or estimate that (a specified thing) will happen in the future or will be a consequence of something."
it's what i was trained to do in medical school.
i can't prophesy, or guarantee.
3
@bill zorn
People got along just fine for millions of years without doctors, diagnoses, or prognoses.
2
I'll be 60 in a month and have plenty of ailments that nag me nearly every day and a wife who loves looking up every possible way I can die despite my lack of money to leave her after my demise.. In fact, she has far more resources than I do.. I suspect she just wants me to outlive her so she doesn't have to grieve in my absence which is fine by me except I don't want to be the grieving partner in all of this. We've even discussed mutually assured destruction scenarios in which we both die at the same time via a suicide pact, but there's always the problem of surviving offspring neither of us wants to have to have to grieve after hearing the news of our mutually decided parting of the ways of life..
Dying really ought to be much easier than it actually is.
13
We begged, pleaded, cajoled, outright lied and attempted to trick our doctors for a prognosis (by getting one of his assistants to give us some information). We wanted to know to be able to plan and prepare; we knew what was coming, because anyone can go online and find the worst possible outcomes with just a few keystrokes, and we knew there were exceptions, because there were also ‘miracle stories’ everywhere. But only the doctors knew what was going on specifically with our father, and the continued frustration of being kept in the dark led to all sorts of unnecessary problems and worse, a sense of loss of control for my father when he needed it most.
Please give patients and their families the choice.
15
Choice is the operative word - some patients want to know so they can plan, others don’t want to know.
Give ‘em a choice, which I believe most docs do.
14
This might be new to some readers but as a physician, the idea of asking patients and their families how much they want to know -- even if it is nothing -- is not new to me. I was trained to ask this question even 2 decades ago as the first question to ask when giving bad news. I do agree that training on how to break bad news is always needed and practice is the only way to hone one's skills.
13
I lost my mother 50 years ago. I was a little girl and when I grew up and asked what she had died from, no one knew. Something bad, my aunt said. I was very angry that I didn't know she was dying. Last year I was looking after a friend with cancer. She was in complete denial. After the first round of chemo and radiation was unsuccessful, she opted for more. She was still in pretty good shape, she could eat, walk her dog, communicate. She still had her beautiful long dark hair and could still participate in life. She opted for a second round of chemo and it flattened her. After 5 days of watching her in excruciating pain, I called an ambulance (against her wishes). I stood outside the door of the room as the doctor explained to the students what was wrong with her, it was obvious that her cancer was neither curable or treatable, but the doctor had gone ahead with the second round. She had not planned for death, refused to sign a DNR and dismissed me as her health proxy and checked herself out of the hospital. A week later she had a friend call me to come back and I admitted her to hospice. She died a few weeks later. Had she not had the last round of chemo, she would have also died, but the end of her life would have been better. This taught me one thing, the best time to plan for your death is when you are well and can think clearly. I have put my wishes in writing and informed my family and lawyer.
38
As a palliative care physician, I frequently encounter the dilemma of prognostication, both making the estimate and figuring out the best way to communicate my estimate. The authors are correct in emphasizing permission-based approach to prognostic disclosure. Barreling into a sensitive conversation with statistics and no regard for how a patient is coping or what they are ready to hear can cause harm. What I encounter more frequently are patients and families who desire some understanding of prognosis, but clinicians who are reluctant to make any estimate.
Great harm can come from doctors shrugging their shoulders because they believe they can't be correct. Prognostic science is improving with research, computer-aided models, and analysis of large current data sets. Predicting the future will never be perfect because uncertainty is baked into the answer. Yet physicians do have a critical role in laying out what outcomes are more likely or less likely and helping patients and families plan for the best case and worst case. That frequently means physicians taking a seat for a compassionate and humble engagement around prognosis.
24
@Christian Sinclair
The final two sentences are the most important and relevant words among this array of emotional and sometimes wildly irrational and uninformed set of comments.
Patients MUST be involved in the decision making process because they each have their own vision of how they wish to spend their time as it grows shorter. And they cannot make decisions which will be consist with that vision if they don’t have information.
Some diseases (cancers included) have treatment options that are very likely to extend life and have limited ill effects. Medicine skeptics like those who say they “will never be treated” for these conditions would miss out on that.
In my medical oncology practice I tell every patient I see with an incurable situation, at the very first visit in which I know that to be true, two things.
1: The goal of our treatments from here on in is to extend your life as much as possible at a quality of life that you deem acceptable. Then I re-emphasize “what YOU deem acceptable”.
2: Learn what you are up against so you can prepare for the worst. Then hope for the best.
12
Babe Ruth died of cancer in the 1940s, not knowing he had cancer. I could see not wanting to know. What's the point? If it's that bad, you're basically doing what the doctor decides is best anyway.
2
In 1974/5 a lump in my groin turned out to be Non-Hodgkins lymphoma. My GP told my then wife, I might have 6 months. No-one told me; I was happy to follow the recommendations of our respected oncologist. I did sort out some important matters; took mega vit. C and cod liver oil (and do to this day) Now, I'm not sure how I would have reacted to the news; I do fear I may have simply given up, but who knows? At 87, I would not want really heavy treatment to give me a few weeks of uncomfortable existence. PS all on our NHS at exactly zero cost.
42
Far more useful to the ill is to be able to decide for themselves the time and place of their death on their terms, for whatever reasons they judge right and proper for themselves as responsible adults.
Being able to decide for yourself the conditions that make death preferable to life is a liberty that must be respected in free individuals who are not the slaves or playthings of others.
Knowing that we can choose our own ends when appropriate is far more useful than a vague guess as to when nature would take its often brutal course that does not respect human persons.
21
Last April, my wife had a series of focal seizures.
MRI's revealed a brain tumor.
Surgery revealed Glioblastoma.
At that point we (and my wife was an MD) knew the question was when, not if.
The surgeon indicated a likely 12 month prognosis.
We then went to Mayo for care -- as Mayo was close to our home and they offered proton-beam radiation.
The oncologist there was somewhat less pessimistic -- based on the pathology and the full excision of the tumor, he felt that perhaps my wife had 30 months from the first signs in April.
She had proton beam radiation, plus a sequence of chemo.
MRI's were clear thru December.
But in February, the cancer returned -- and returned in an aggressive fashion. A second surgery and then a start on chemotherapy. The oncologist believed that she still had months (he thought the chemo would have some effect).
Turned out not to be the case, by late March my wife was in rapid decline. By the end of April we stopped the chemo and shifted to Hospice. By then not only was it clear that her days were numbered, her ability to speak or walk was fully compromised.
So we knew (and by this point I likely knew better than my wife) that the end would be within single digit weeks.
She died just over two weeks ago. We had a good life together, and for the most part the first 10 or 11 months from the original diagnosis were OK.
The last 2+ months were not.
56
That is a terrible trauma. I hope your pain eases and you find a good path forward.
4
@Barry
I am sorry for your loss.
5
In India, I understand, at birth, you are told how long you have to live. This may be a tradition in China, too.
My Indian friend, a Ph.D. scientist, received this information and felt that he would die at the age of 70. At age 70, he passed away of complications due to an infection he acquired in a hospital.
Was the fact that my friend felt he would pass at 70 a factor in his death? We don't know for sure, but I would say it was.
The state of one's mind has much to do with the state of one's health. I have two types of cancer (melanoma and prostate). Would I like to know how many years I have left? No way! I'm going to live well past 100 years!! Silly? If I truly believe this, who knows? I might!
16
He wasn’t given information. He was given nonsense.
3
To each his own. I would like to have some kind of time line if, for example, my diagnosis is some kind of cancer. I do not want to leave a lot of things undone for whoever will take care of my things and papers, etc, after my death. Also I want to know about how much time I have left to relate to my family and friends and meditate on the past. Knowing myself, I would take that information with a grain of salt, but I want to know.
15
@Harold Johnson I so agree, Harold. I'd want to free up assets otherwise saved for an assisted living facility and maybe treat myself and a friend to a long luxury cruise. Do something memorable while still mobile and mentally able...truly savor the days.
12
Years ago I changed doctors because she could not understand why I told her I did not want to know if I became terminally ill. She insisted I should know so I could settle my affairs. I replied “what? my debt”! And walked out never to return.
I am from a family that if you don’t die from BRCA 2 related cancer, you die from Crohn’s disease. Years later I drew the cancer straw and am going on my fifth year in remission from stage IIIC peritoneal cancer. My doctors have never said what my prognosis was, but I understood it was bad. I am fortunate that a positive attitude and a team of the best oncologists has kept me going long past, what I am sure, I would have been told by less empathetic physicians.
12
I provide my patients with statistics and then advise them: that’s what the numbers are. Let’s focus on all the positive variables that put you into the better end of the range. And always remember, these are numbers, predictive only of a population not YOU as an individual.
14
Stage IV Non-Small Cell Cancer (two and-a-half years in) here. To be honest, I have no idea how long I have to live. Brain tumors following melanomas before the lung cancer. Been told five-to-seven years in total. Have a wonderful lover, a son who finally understands me after railing against losing his father to brain cancer 5 years ago, then having his fiance break up with him while my husband was dying. Some hard stuff. Can't begin to begin the bucket list because I still am working (the curse of our non-universal-healthcare system).
All I can agree with is "just follow their journey." Take it from some who IS there
15
I want to know when I will die. I have to prepare for my death. I have to accomplish my work before I die. I have to say thank you to my family and friends. The rest of my life will be very important. I can’t waste time. Of course I think patients have the right to decide they should know the prognoses or not.
12
@Matsuda "I have to say thank you to my family and friends. " ; do this today. we never know when our time is up.
2
@Matsuda Really? Then you should prepare now, never leave work unfinished, never waste time amen thank friends and family every day. There is no way to “know” when you will die. It could be today, from some completely unexpected cause..
Sometimes they don't know what they think they know, so they shouldn't say anything unless it is prefaced with the idea that anything is possible. The mind works in mysterious ways, and if you will yourself to life, we cannot predict your end date!
Got it?
5
As a retired oncology RN, and a two time oncology patient, I must point out that while the mind may be powerful, and a “positive” attitude is helpful, it rarely changes the course of the disease dramatically.
76
But as an oncology nurse, you are going to be most aware of the folks who need the most nursing, right? Not the ones who, like various commenters here, have long outlived their estimated times left to live. They are not a scientific sample either, but in a world of better and better treatment, and where even with old treatment there is often a range of outcomes, their experience should always be noted. Unless you were really very carefully collecting data, you just don't have the scientific perspective you seem to claim just by stating your occupation.
2
Looking forward to BJ’s book.
It’s so important to take a moment to think about death.
Life doesn’t owe us anything. Death can come at a moments notice. You might be ready for death or you might not be ready, it doesn’t matter to death, but it can make a difference for you and your loved ones.
Or, death might give you a lot of warning and you might end up longing for it to come long before it does. But I think it is important to consider the fact that your death is coming and you will probably have a little bit of agency around it and take it from there.
We are starting to see people preparing to die heroically if that is what fate brings them. Others die majestically, gracefully, gently, defiantly. It’s often possible for you to have that kind of choice at the end of life. It doesn’t take long to prepare for death, it’s more of an intention, giving oneself the permission to surrender into the peace of death, if you have a death that gives you notice of its approach.
My mom died last year. She had hospice and dementia, but at the end the dementia cleared enough for her to say many farewells. My special night with her she said: a few more days won’t hurt. Then I watched her glide in for a graceful landing a few days later. I was so impressed by her magnificent ending.
27
A decision to not know your prognosis is impelled mainly by fear of death. Some people don't want to think about death because the idea upsets them. Others no doubt merely need a little more time to process the initial shock and then are able to deal with the information.
In terms of getting things in order, making final visits and saying your goodbyes, you need to assume the worst even if you have avoided learning the prognosis. And not knowing the prognosis seems, in itself, unlikely to confer greater peace of mind or make your final days more joyful. So the actual benefits to be derived from willful ignorance are probably marginal.
Confronting death as an elder is surely easier than when still youthful. If you are young, you are likely to feel cheated and want to fight it. But if you are very old, most bodily pleasures will have already waned and the prospect of parting with those few remaining will seem a minor deprivation.
Another factor is your expectations. If you are an atheist, death will seem meaningless and arbitrary. You may seek to prolong an otherwise unfulfilling life simply because oblivion must inevitably appear worse. But if you entertain the prospect of consciousness surviving physical death, the process of achieving a smooth and orderly transition may invite your attention, making a sense of the timing useful.
Finally, the current era surely takes some of the sting out of death. Can death really be worse than enduring four more years of Trump?
32
@woofer. Why do you assume the atheist life was most likely unfulfilling? Or bring in politics during these powerful and meaningful end of life discussions?
2
My father was diagnosed with a form of leukemia in his early 70s that was detected on a routine blood test and became quite depressed over the diagnosis for several months. There was no specific treatment and he didn't develop any symptoms for over five years. I know the doctor had to inform him of the diagnosis but in this case I'm not sure if he wouldn't have been happier not to know the diagnosis until he actually became symptomatic.
As to that 1961 survey, it's worth noting that at that time very few forms of cancer would be successfully treated so there many doctors may have felt that there was little use in telling patients of the diagnoses.
13
As someone who had a less-than six-months prognosis last year (and one-year prognosis the year before, at 45), knowing was important to me. It allowed me to apply for death-with-dignity medication, assign friends (and funds) to deal with my remains, gift my few nice belongings, etc. And by the second prognosis, I already felt that I was dying (no premonition but physical symptoms), so it didn’t come as much of a shock. I had asked both times, though. A year later, I’m still alive: a new targeted therapy started noticeably kicking in when I was merely days from death. It took four months to feel a quarter alive again. I plateaued in that state; I’m mostly housebound. Once the targeted therapy quits, I’m probably done. By now, I no longer require my oncologist’s prognosis: I know my body, the cancer, and the drug well enough to do the math myself. It’s the rare terminally-ill person who dies too quickly to realize they are dying. So I’m not sure why anyone wouldn’t want a prognosis at some point. It allows us to make arrangements in a timely manner and not let the entire burden of that fall on relatives and friends.
38
@L. Veen
I rambled a bit. My point was that priorities differ vastly if one has a 6-months vs, say, a two-or even five-year prognosis.
If something about the terminal illness experience needs urgently changing, especially for younger patients, it’s the prohibition of “curative” (since the type of cancer I have is currently incurable anyway, the wording defies logic) therapy while on hospice care. I was denied hospice and access to an associated volunteer program and other benefits even when my doctors certified that I was weeks or months from death because I wanted to keep taking the new targeted therapy my oncologist prescribed. It only has a 20% response rate, so it was far from sure that it would help me. It definitely wasn’t and isn’t a cure; when it does work, it buys most patients about 9 months. In my mid-40s, I was expected to give up all treatment and hope just so I could get a little help. I ended up fending for myself, and leaning way too heavily on a few friends (who all happened to go on vacation at the exact same time once). It was brutal. Eventually, the drug did kick in, but I had spent almost six months crawling around my tiny apartment, and having to leave the house for medical appointments instead of care coming to me.
16
@L. Veen
Is knowledge dependant upon attitude? I was diagnosed with very aggressive prostate cancer in 2004, meant to have died 2005. Carcinoma started to flare up in 2011. I was not informed that death was imminent until 2017. In july 2018 my then oncologist informed me that she could prescribe a drug that would rnable me to live another 3.5 months. i ASKED 3,5 FROM WHEN. The same response. PSA level 13.7. I fought knowing the prognosis. Changed hospital. Proactive consultant. PSA down to 1.29 and stable. I am alive and fully active at 78.
12
My father passed in a matter of months after diagnosis. I wish I knew he was that close, I was never told.
The two year prognosis that you got is not like what I have seen. What I have seen is a declining probability: chance of living 3 years 60%, chance of living 4 years 40%, chance of living 5 years 20%. They can not necessarily predict your case, but they can share the probability of past cases aggregated.
On top of that I think there is some spin. Yes, your weather person likely does it too. If they think rain could start between 2 and 6, they will just say that it will start at 2. This gives people time to plan. On average a weather event happens after they predict a start time. I think doctors use a similar strategy. They want you to have time to get your affairs in order and they hope you get more after that. But, like the rain, it really could start at 2.
16
Three weeks ago my French husband, a physician trained first in France, overheard me talking about an acquaintance who had just been given six months to live.
My husband was surprised and displeased to hear the prognosis. He said his training in France was more sensitive to the unpredictability of pancreatic cancer.
Six months turned out to be three weeks. The gentleman died yesterday.
13
When my mother was diagnosed with lymphoma, her prognosis was 6 months. That ended up being spot on. Maybe we were "lucky", but it gave her and us a timeline on which to make decisions around her estate, and to brace ourselves for the loss of this woman who had given her all to her children.
15
Just before their 47th wedding anniversary, my mother askedg my father's oncologist if he would survive his just diagnosed pancreatic cancer til their 50th anniversary. The surgeon lied and said yes. Despite the best care at MSK, my father passed 10 months later. That weekend, the oncologist pulled out of the driveway of his home and was killed by another driver. The hospital did not find out til he didn't show up for his Monday AM surgeries. So at least my father outlived him. That lie both hurt my mother and made my father go through treatment he otherwise would have refused.
16
It's absolutely not true that it is more an art than a science. It is a science based on sound statistics. However, there is a lot of variation, and it is not at all unusual to see someone live years longer than the median in this and many cases.
12
I certainly have to agree, this might be the only time when ignorance is truly bliss. The movie Arrival with Amy Adams covers this mortality issue very uniquely. By learning the aliens language her brain re-wired itself to interpret time as a spatial dimension, providing her an ability (or curse) of seeing the entire expanse of her life - beginning to end. I simply don't know what could be more burdensome than living life by ticking off days until one cannot tick any more off. Imagine, the last year, last Christmas, last Spring, last Sunday...
9
As a stage three patient, I never received any kind of prognosis of this nature. I was simply told that the chances were high that I would be cured. I was under the impression that few doctors today are actually issuing timelines, rather than very rough estimate. (3-6 years, for instance.)
And yes, I would want to know. Of course. There are too many things to do that need to be done to be ignorant.
17
There is nothing like someone passing completely without warning to leave you reeling for the rest of your life. Having been through that more than once, for me there is a gift in having an idea of when you're going.
Probably not a popular take on it and one that might sound selfish, as well as cold regarding the suffering and pain that can go with a terminal diagnosis. But the experience of someone just being gone...? Given the choices, I'll take knowing.
And I had a form of employment once upon a time that exposed me to a number of funeral homes. It helped. I got comfortable seeing people in, shall we say, an unanimated state and had interesting conversations with funeral directors. They had no doubts that life continues, that many people know that it's coming and that those who know make the transition more easily. And loved ones 'left behind' start grieving before they're gone, even if they don't realize they are.
12
One correction, the prognosis is not an ‘art’, it is based on the survival data and it is not presented as a single number but a range.
As a mental strategy for dealing with death, not knowing the prognosis has its faults if you have things you want to do putting it off to next year might not work.
I’d think it would be worse not knowing and then having regrets at the end when it could have been avoided.
11
A thought: Perhaps...If a doctor has a unconscious drive for always wanting to be right...the doctor might make unconscious choices to keep the patient as close to the target date of death that the doctor predicted.
If a doctor told me I had on X years to live...I would look for another doctor... a doctor who would be more open to the possibility of living longer.
A story: A friend had a specific heart surgery. The doctors told him that after the type of surgery he had people rarely lived more than two to three years. That was seventeen years ago.
7
So much is in the news these days about choice. I think doctors should give patients a choice as to how much they want to know about their diagnosis. “Do you have any questions?” would be something to say after delivering hard-to-hear news. And, then following up with, “If you think of any questions, call me.”
Personally, I’d want to know every single thing a doctor could tell me. I’d get second and even third opinions. I’d also do research on my own as to what alternative treatments would be helpful. To me, knowledge is power.
I want physicians to partner me through illness, not make decisions on their own as to how much information to share. I am the boss of me. In my opinion, patients need some sense of control when facing life-altering illness. And, having said all that - there are statistics about life expectancy, but people are people and not statistics.
23
Seems to me it's a win/win for the physician to lowball the prognosis. Patient/family grateful if outlived, accepting if it isn't.
4
Another practical reason for a patient to remain ignorant of a bad prognosis is that the anxiety that results from such a prognosis may very well exacerbate the underlying illness. In these situations, ignorance may literally be bliss.
20
When I practiced neurology, I took comments about other doctors with a large salt shaker nearby. Patients and families needing medical care don't always hear, let alone accurately, what is being said, especially in severe, emotionally-charged cases, like major illness and imminent death. I learned to cut "other doctor(s)" a lot of slack. Prognoses I gave were couched in plural non-integer nouns: hours, days, weeks, months. I used basic probability where I had it (especially with survival/recovery after severe brain injury, which is a function of age, cause, and length of time since occurrence), and I had to steel myself to answer the same questions by the same family members multiple times. It's normal. I was accused by some as taking away hope, but I firmly believed that giving false hope was worse. Maybe that was wrong. Occasionally, of course, someone didn't like my manner. That's to be expected. But the nurses respected my approach. That mattered. In the final analysis, I don't remember many I cured; I do remember many days and nights in the ICU trying to make dying and death as understandable and dignified as possible given the many factors in play.
53
Was diagnosed with neuroendocrine cancer four years ago... live to fight, fight to live. Enjoy every day
35
Years ago, at agenineteen, my late husband was not told, despite active treatment and surgery, that he had cancer. Finally he figured it out on his own. As you can imagine there was a lot of anger about that. Later, at age 31, he was diagnosed w a rare disorder and a very knowledgeable specialist told him, “We just don’t know. You may even live 10 years,”. What does a family with 2 children under 3 do with that diagnosis? Fortunately he was good at just putting that diagnosis on the shelf and fully living his life. He continued necessary medication but also continued working, running, playing tennis, being dad. He passed the ten mile marker easily. Fifteen years after diagnosis another cancer showed up. He never ever wanted to know any prognosis this time. The ability, if not to deny, at least not give in to disease, had served him well. He chose to continue dealing with disease the new cancer diagnosis in the same manner. That was hard for us as we could see him failing and he would have none of it. But, watching as loved ones fade away is hard no matter how it is done. It’s important to let the patient chose how they want to manage the situation. I like giving patients that choice. As is mentioned, they have to fill out piles of paper- this one shouldn’t be missed. I like that the option is given to check to see if one has changed one’s mind about what one wants to know.
30
May I suggest an essay by Stephen Jay Gould which he wrote after being diagnosed with abdominal mesothelioma. “The Median is not the Message.” Following his diagnosis, and being a scientist he read all that he could about his disease and because of his education and training used this knowledge to his advantage. A different take on this issue
28
As someone who was diagnosed with a rare and aggressive cancer I know what the odds are. But that is all they are. However because the experts talk about medium term survival rather than cure for my disease I am setting my family up for if things go as they usually do in my case. I havn't given up hope for something different. I do find it fabulous to know that I am making a garden for them, I am teaching my 12 year old daughter all the things I thought I would have all the time in the world for. I am getting photos sorted, writing letters, planning gifts. I think we should all write letters for our loved ones and put them away, because alot of people don't get the heads up they are going to die, I have that. I hate it but I see the value of it.
101
@Kirstine You are inspiring!
3
There's a huge difference between survival statistics for a population of patients with a given disease, and how long a single individual will live with same. The former is group statistics, the latter is usually a wild guess. Those lines in the movies--"The doctor says I have six months to live!"-- are fantasy. In my years of practicing medicine, I never heard any physician say that.
In fact, we were taught to avoid offering a quantitative prognosis, even if the patient insists. The best we can tell an ill person is the percentage of people who are still alive at one year, two years, five years, etc.
The only exception was a case my wife had years ago. Without going into details, a woman discovered during pregnancy that she had a fatal illness. How long she had left had many implications for how she chose to live, and the chances that her child-to-be might remember her. After a long discussion with several physicians, she was given an approximate range for her remaining lifespan. She was appreciative.
27
My best friend's mom was diagnosed with terminal cancer -- melanoma which metastasized to her colon and stomach. She'd had vague symptoms for months, misdiagnosed as a "sensitive upset stomach".
When she finally heard the news, after exploratory surgery, that the cancer was advanced and even necrotized at the center....she fell instantly into total despair and turned her face the wall, giving up all hope and stopped eating. She died a few months later. She was 56.
On the other hand...my best friend died of cancer at 51. Diagnosed at 47 with Stage 0 cervical cancer -- so early and they got it all, and the doctors were extremely optimistic. Optimistic by nature. she decided she was fine, so....she continued to chain smoke. She also decided (against doctor's orders) to take testosterone supplements to deal with the "instant menopause" of her hysterectomy -- she was beautiful and terrified of aging.
She also blew off follow up appointments. In about 2.5 years, her cancer returned and spread to her spine and lungs. She only went to her doctors when her kidneys began to fail. By then it was far too late to do anything. When her oncology team gathered to tell her she had only a few months....she turned to me and said "Isn't it wonderful? I'm going to be just FINE!" Total denial.
BTW: for many people...not being told the truth means that -- like my friend -- they don't make out a will or arrangements for their children. She left behind a 6 year old child.
29
My mom is 85 and a half and has been battling ovarian cancer for 20 years. She now has stage 4 since 2015, I googled a lot at first, the 5 year outcomes etc, then stopped. It was too hard.
She quite surprised her oncologist (and me) when, being a normally very shy and introverted person, she blurted out, “so how long have I got?” at one of her appointments a few months ago. He likes her very much, we were both taken aback, but he just answered very professionally “I’d say 3 1/2, 4 years.” He told her because she asked and I’m sure he’d have preferred to not give a definitive prognosis. I had certainly not wanted to hear it. But it was Mom’s call. We are doing all the fun stuff we can, when you’re 85 the “when” can be any time. And I have learned well, as my dear cat got her cancer diagnosis in March and got a prognosis of 1-3 months, she lived almost 48 days, I just tried to be in the moment with her best I could, it taught me to not hold back now doing all I can do with my mom while she’s still doing ok. If she wants to do expensive things and eat lots of ice cream, then we’re doing it.
23
I took a lot of statistics courses in graduate school, and as an academic I worked many research projects, taught research methods and reviewed research studies for journals.
In 2014 I was diagnosed with Stage IV breast cancer; the odds are not good. However, I reminded myself that these predictions that doctors give patients are based on group statistics, but are really not predictive for any 1 individual.
For example, you can be told there is a 95% survival rate for your cancer or diagnosis--meaning 95% of patients are likely survive, whereas 5% are likely to die. But you don't know which group you as an individual will fall into.
So, you learn to live with probability and uncertainty (which is not necessarily a bad thing) and to take advantage of and enjoy life's moments (ups and downs) until you cannot.
But here is a story I heard from a doctor about telling patients their odds.
A very anxious patient wanted to know the odds of having a successful operation that he was going to have the next day. The doctor told him cheerily about a 97% success rate. The next morning when the doctor saw the patient, the patient looked terrible; he said he hasn't slept all night. The doctor asked why? The patient said what if I am not in the 97% group but in the 3% group?
The best doctors blend the art of medicine (the art of truly caring for each patient and communicating well with that patient) with the science of medicine and then walking with each patient on their journey
13
The best thing a MD friend said to me was that its only a number. Where any individual is on the distribution curve is not known. There is always hope.
There is always taking control and refusing to be a victim no matter what and where a person is at.
Ultimatley, one has to be fierce and at the same same time at peace with ones situation.
27
It is a good time to (re)read Steven Jay Gould's essay, The median is not the message. A free pdf version is on the internet. I was very fortunate to hear this story when he gave a public lecture at my university. There is an excellent article by Charles Manski on the potential misinterpretations of risk factors in health research.
Population analysis is used to determine risk. A patient is a data point represented somewhere in this distribution. Prognoses are based on medians or means and are limited to the population, time and technology. How useful is the prognosis if the patient is in the 25th or 90th percentile of the distribution? How useful is the prognosis to a patient if they come from a sub-population that is underrepresented in the analysis?
9
My father, my closest friend, was diagnosed with metastatic lung cancer and died just six weeks later at 56. He was a chronic smoker but appeared well until a couple weeks before the diagnosis. As a cancer researcher, I knew on poring through his images that time was limited. At his request, we informed him of his conditions and the prognosis. He was stoic and good humored to the end. We had a number of candid conversations before the inevitable. Death is not as scary as when accepted, though admittedly, there is a fair bit of individual variability. The Prognosis Declaration seems like a sensible way to account for that variability. So long as we continue to treat only the symptoms of cancer as opposed to the causal events, death will lurk at the door of those diagnosed with time as an unknown.
24
My experience is that the people who are aware of their prognosis tend to live their lives to the fullest for as long as they can, have the opportunity to get their affairs in order, and get to spend as much time with the people they love as possible. Even my friend with inoperable stage IV lung cancer spent her last couple of days with friends and family, having a good laugh.
Now that Canada has legalized physician-assisted death, people can even chose the time and place of their passing, and who they want to spend their last hours with. Talk about empowerment!
63
But prognoses are so often wrong. That's my concern. So many patients that I communicate with say they have outlived their prognosis by weeks, or months, or even years. And the opposite happens, also. What do you do when nothing happens the way you expected?
7
@LauraF
As a physician who has cared for many terminally ill patients, I have seen much more variation in responses to diagnosis and prognosis then you have. Many patients become depressed and rather than living their lives to the fullest give up and essentially wait to die.
8
@Mary Accept the extra time as a gift. Meanwhile the person has had time to have all their affairs in order if and when the inevitable does occur.
1
The premise of this article is inaccurate and irrational. Below, I will explain first why it is inaccurate and then why it is irrational. First, the inaccuracy. The argument appears to be that, because prognosis is based on statistics, it must be an "art," and not a science. This is a false claim. Prognosis is difficult, and the best possible scientific approach (given our state of knowledge) would be to base it on statistical estimates. Ideally, this is done on the basis of lots of data and relatively precise equations (from regression models). In many cases, however, the data have limitations. This does not make the predictions "art" - they are still based on science and a prime example of applied science. (The statistical prediction should be distinguished from clinical or opinion-based prediction. Research has been perfectly clear that humans are poor at making clinical or expert predictions, unless they use statistical equations as the bases of such predictions.) Second, the article's argument is irrational. Yes, it may feel emotionally comfortable in the short-term not to be given a prognosis, and, yes, the prognosis will have a margin of error (which a good prognosticator will share with the patient, as the statistical models provide the margin of error). But research has also been clear that making health and financial decisions based on short-term emotional gains (avoiding unpleasant feelings) generally end up making maladaptive decisions. Denial is not healthy.
21
@Paul To help deal with those types of financial issues, it's best to make financial plans before you're on death's doorstep and still thinking rationally. My husband and I, ages 55 and 53, spent several months "getting our affairs in order" even though we are by all accounts healthy. I've been in a situation where a close relative didn't get his affairs in order and his death left the family in splinters.
11
@WK
"My husband and I, ages 55 and 53, spent several months "getting our affairs in order" even though we are by all accounts healthy. I've been in a situation where a close relative didn't get his affairs in order and his death left the family in splinters."
Why did you wait until you were 55 and 53 to get your affairs in orders, then judge your close relative for having failed to get his or her affairs in order ?
My father went to work at age 51 and dropped dead. He had started getting his affairs in order when my mother was pregnant with their first child, My father was 21 at the time.
3
@DJS We had done estate planning previously, and we both had wills and health directives, but decided to do a much more in-depth plan. And the family member had a will but did a poor job of preparing his daughters (my step-sisters) for the fact that he left his money to their step-mother. So it wasn't that he didn't have a plan, it was that his kids thought the plan was different than what it really was. Once he died, the remaining family members were left to deal with it, and it caused irreparable damage.
1
It is better to be told the prognoses, so that one can make the best of the time left. If one lives longer that is a bonus. If a tsunami is heading in my direction I would like to know so that I am prepared to either get out of its way or face it. So prognosis is both a science and an art. One can take it with a pinch of salt or take it seriously and do something about it. If a person cannot handle the truth then that is an individual's choice. An informed decision is best way forward.
This reminds me of a story of a close friend of mine residing in S. Africa. He was diagnosed with ALS and was told he had at the most 5 years to live. He said okay. I will travel to places I never did before and I have some 25 books that I would like to read before I die. I will get my finances in order and I will spend more time with my children in the time left. I met him in his home a month before he passed away. He died a happy man under the crippling circumstances that he lived his final days. We are all going to die some day and there will be times in our lives we are going to realize that the time left for us to live is limited. At such times one lives their life like everyday is the last day and make the best of it and do what you want to make it.
Let me tell you another story of a friend who lives happily in Florida who has survived Pancreatic cancer twice and written a book about it. He was also told by top Boston oncologists his days were numbered, He proved the prognoses wrong.
24
Wait until you get a fatal diagnoses and then get back to us on that.
Last year I was diagnosed with an early stage OV cancer and am six months away from my last treatment. One thing I knew from the onset of this disease, was that I didn't want to play the numbers game with my CA 125 count. I can too easily scare myself and my Oncologist assured me that's what she was there to do for me, and she would let me know if she was worried about my markers. I like that decision. It's allowed me to not play games with myself (as I'm prone to do) and to leave any next moves in the hands of science.
13
I have had a few fortunate patients who have been able to depersonalize their own dying to the extent that as they became fascinated with the experience fear and anxiety seemed to fade away.
20
@Mike Murray MD you wrote, "I have had a few fortunate patients who have been able to depersonalize their own dying to the extent that as they became fascinated with the experience fear and anxiety seemed to fade away."
Yes! Excellent point! It is very useful to observe and seek to understand difficult situations as being interesting in themselves and not only in how they personally affect us.
This is easier to do when physical pain and comfort are managed well. This is why I champion "palliative medicine" whether or not hospice is later deployed.
4
As a life-long medical practitioner in Critical Care, I can affirm that most doctors are not very good at prognostication, meaning comments like "you'll never walk again," "you'll eventually lose sight in both eyes," and "you have six months to live," should be taken with a grain of salt. Doctors do have a responsibility to say such things, and patients and family should understand that the doctor is distilling for you a brew of averages and statistics and personal experience, and is not looking into a crystal ball. Every human is unique, every experience with cancer and life-threatening illnesses is unique. Yes, when the stakes are this high, most doctors will do their best, and provide you with all the knowledge at their disposal that might help, and yes, an inner voice telling you that you can "beat this thing," is probably just wishful thinking.
But Not Always.
22
As an oncology nurse, I've seen this a little differently because I've taken care of people from all cultures with Stage IV cancer.
When the palliative care team delivers the news that no more treatment is available or recommended, it's a dark day. That can be exceptionally challenging for the nurses when the news is only given the male in the room, because the women (or minor) has her medical decisions made for her by the leading male in the family. It's hard to say what the patient understands and whether she is subscribing to false hope. If she does not have an understanding of what is happening to her or is given false information, she loses the opportunity to say "goodbye" or clean up details of her life. Or even have fun. She may be doomed to spending her last days dying in a hospital room, drugged and uncomfortable, when she could be at home. She loses the opportunity to make a choice.
I've seen 20 year olds who didn't know they were close to death, still filling out college applications instead of enjoying their lives. I empathasize with the commenters here who understand the Prognosis Conversation should be the patient's choice. But when there is no choice and the conversation isn't broached because of "cultural differences," it does little to empower the patient. And such a shame, because there are plenty of people who would enjoy a good party and a celebration before they die.
110
It's interesting to me that some commenters think their loved ones were/are in denial. As a pancreatic cancer patient, I have already outlived the "average" patient with this disease. As has Ruth Bader Ginsberg, and has Alex Trebek. It's about living your best life doing what you love until you can't. My affairs are in order. Now I'm enjoying traveling and hiking and spending time with friends and family. If I drop dead on the trail tomorrow, so be it.
85
@Mary
I appreciate your comment. But I didn't go into denial upon diagnosis--I just figured it is what it is, and let's get through this.
So Stage 4 breast cancer survivor here, and I too have lived past my cancer weather forecast. But it taught me (the hard way) to live and enjoy while I can. Despite the ongoing aftereffects of chemo and radiation, I realize I really am fully appreciating life more than ever, and am amazed by how frequently people whine and complain about petty things and other people, which I too certainly did before the diagnosis and treatment.
Okay, I whine incessantly about Donald Trump and Mitch McConnell, but they ask for it, and are fair game
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Huntington’s is a devastating disease that shows itself in its victims usually after age 40. It is a genetic autosomal dominant disease—if one of your parents have it, you have a 50% probability of developing this disease. You will develop abnormal movements of the limbs, eventually cognitive loss and a prolonged stay in an institution shaking until death finally comes. There is a well established test to identify the mutated gene for this disease.
If you go into some of Huntington’s disease patient support web sites, you can read in the blogs that whether or not to get tested is controversial. Do you really want to know this fate? It is not unusual in the blogs to read, “My girls are 12 and 10 now, so maybe I should get tested, but do I want to tell them the results?”
Some want to know the prognosis and some do not. That is your right to choose. If you want to know, the physician needs to be clear about the fallibility of their predictive ability. That is the problem with “evidence based medicine.” On average, the evidence says this, but that one patient is not average. When my wife was diagnosed with secondary AML, the physician did not give us a prognosis, but I knew not many last a year even with severe chemo. She survived for one year. She was average.
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I appreciate that each individual should have the right to choose the information they wish to be exposed to. One's death is one's own. But I'm caring for a person with advanced liver disease. When he sleeps, I worry it is the beginning of a coma, or worse. I check to be sure he's still breathing. When I'm away, I can't help expecting the worst on return. The doctor has refused to give a prognosis. The research literature is a help. But he is an individual with an individual profile. Will he die tonight, or in five years? There are issues to be resolved if he is about to pass, not least of which is notifying his family, which he resists. There is his preparation for the transition to consider, and there is his estate. Could we not have some direction, at the least?
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A prognosis is an informed (we hope and more-or-less) prediction from a fallible fellow human. It's neither a sentence or a disclosure of certain knowledge of the future. Nothing removes the essential unknown of when our personal end will occur.
Please, take responsibility for your reactions to doctors' opinion.
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My husband was diagnosed with stage 4 pancreatic cancer. Although I confess to doing a search on the computer, the results were frightening. Our oncologist was more reassuring, so I put fear aside and lived on hope. I am sorry I did. My husband died a month later, at age 51. I dearly wish we had discussed what he wanted for my life, and that of our son. I know he would have wanted us to be happy, as he was a kind and loving man, I just wish I had heard his words. Although we had time to say how much we loved each other and to be present, eleven years later, I have so many things I wish I had asked him. Knowing a prognosis does not make it written in stone, but it might give those facing serious illness the time to discuss important matters. This can be especially important, and make the grieving process somewhat easier.
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I am so sorry that you had this experience. When I was diagnosed, we immediately took care of the details. Within days. I think that is a good plan. Then the remaining time, however long it is, can be spent as the patient desires.
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There is always a road not taken, and second-guessing our choices in these private traumas is hard not to do, with no fixed traditions to guide us in our changing world (often it is changing for the better, but it can be very hard to navigate, especially when frightened and trying to support a suffering family). I hope you can grant yourself the peace your husband surely would want you to have.
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My father was diagnosed with Stage 4 cancer that had spread to the brain. After surgery, he was told that he had approximately three months to live, and that chemo would not be effective.
He lived two and one half years after his diagnosis, with relatively slow spread of his cancer. His cancer did not kill him. He died of cardiac arrest at home.
Although my father was given a gift of significant extra time with family and friends, his doctor’s prognosis ended up scarring him psychologically. He spent his time waiting to die and depressed. The doctor was apologetic about his “mistake” and made jokes.
Doctors have a lot of power. They should speak about life and death carefully.
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@Aileen
As a physician myself, I find it very hard to believe that any competent physician could be so certain about a three month life expectancy.
Yes, we can often tell that someone is going to die within the next few days if their organs are failing but beyond that it's a crap shoot based only on averages with no certainty for the individual patient.
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Sometimes the family will really want to make sure that sis’ or pops understands how serious their illness is. It’s not necessary. And if it’s possible to make their quality of life worse, then it’s counterproductive and contraindicated.
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And one's prognosis does nothing to reduce the odds of dying any number of random ways each day after the day of diagnosis.
Because, in addition to birth, one fact that unites (or should unite) human beings is solidarity is that each and every one of us shall die. And death normally/typically seems either too soon or too late, and Goldilocks deaths are rare. That too should be a source of solidarity. If we would but let it.
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AND WHAT ABOUT COMPASSION AND CHOICES?
Improve care, expand options and empower everyone to chart their end-of-life journey.
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“ ‘What does a good day look like?’ That question — when asked of both terminally-ill and healthy people — has transformed Atul Gawande’s practice of medicine.”
That is the introduction to an early May podcast of “On Being,” with Krista Tippett, in which a physician relates how his thinking about end of life issues changed over the course of his medical practice. I found it thought provoking and moving. There’s dignity in honoring a person’s choices. That’s the message I heard in both the article and the podcast.
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My mother used to say that when she got old she would go to a cave in Tibet to die alone.
As it happened, she died of pancreatic cancer after driving herself at the age of 71 to California and never, not once, seeing a doctor. She never had a diagnosis, let alone a prognosis.
Although she wasn't literally alone when she died (she was in a hospital), she was in a figurative cave in Tibet, far away from her children and her Vermont home. I've always believed that she died the way she chose to die. It was hard not to be able to say good bye but I've always respected her decision not to know.
Her last words, pointed out letter by letter to a nurse in the Santa Cruz hospital: ALWAYS LOVE
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In my case the question isn't when but if. If the if happens the when will, statistically, be in about a year. I get scans every three months to see if the cancer that required removal of a leg at the hip a year ago has cropped up elsewhere. The anxiety surrounding that is so great and the odds so against me that I find myself almost hoping for a positive finding so I'll at least be able to live with some kind of direction. Go crutching around the Louvre, bungee jump, get drunk in a biker bar, try meth.
I'm old enough to remember hearing my parents and their peers ask whether or not they'd want to know if they had cancer. The men said yes, the women said no. Withholding the information from children is valid—what good would it do for a seven-year-old to know?—but I can't imagine any adult not wishing to at least know if their diagnosis is a terminal one.
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@Bridgman: hey I am glad to see you survived after all. Read most of your blog. I am so sorry about the loss of your leg and glad you've survived.
I hope this results in you being at least slightly more optimistic.
My advice before and now is the same: live each day as if it were your very last ... and as if you knew you were going to live forever. BOTH. At the same time.
You have many blessings in your life, despite your illness. I wish you all the best.
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@Bridgman There is a wonderful book called "The Private Worlds of Dying Children" - and among other things, it shows that children, too, often want to know; and often suffer from secrecy. And they often conceal their feelings to protect their parents' feelings.
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@Bridgman
I love your ability to bring humor to your situation. There’s nothing more human than the entirety of your response.
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My brother had a very serious heart condition. For years he had a defibrillator and was hospitalized several times. He lived in an assisted care facility, two doors down the hall from his (our) mother.
After his last attack his physician told him he had possibly three months.
My son was down there (Florida) visiting his grandmother and uncle. While there my sister (his aunt), who is a self-absorbed physicians assistant, told my brother he had "perhaps a week, no longer".
He called me in tears asking when I was coming down to see him. I told him "a couple of days" and was buying a ticket when my sister emailed me writing that my brother died an hour earlier.
Was she expecting some sort of prize for her accuracy?
Draw your own conclusions. I've made mine.
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Not everybody has the resources or the time to spend the next 5 years taking family trips to Spain, Japan, France, Italy, Amsterdam and Copenhagen. For a lot of people, being able to plan ahead, re work, taking social security, deciding how to spend limited money, etc. is crucial
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@Larry Figdill
Of course, if you spend limited money and it turns out the prognosis was inaccurate and you live longer than you thought you would, you're going to be in pretty bad shape. I think that that's one of the points of the column: there is often so little certainty as to prediction of life expectancy, it may not be a good idea to gamble too much on its accuracy.
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Merely being able to survive is crucial to many.
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@Larry Figdill: You'd be amazed how many people who -- if they DO NOT think they are dying immediately -- don't bother to make out a will, or any custody arrangements for their children (let alone their pets) -- who leave chaos behind them.
My best friend, a lifelong optimist, died at 51 -- never having made out a will or any guardian for her 6 year old adopted child. As a result, her death set off an AWFUL battle royale among her relatives for custody of the child -- because a huge amount of money, real estate, life insurance and SS Survivor benefits were attached to that little kid. I know this was precisely NOT what my friend would have wanted, but she felt strongly that "making out a will means you will die soon" -- so she refused to do so.
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My mother was already elderly, but finally, I knew she would not last a week, how, she stopped talking, not that she couldn't talk, she just did. She quickly dropped into a coma, and went in 5 days. A very hard 5 days, for both of us. Personally, I would like to know a month before, I've things to do that cannot be done any earlier.
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Even if it were possible to predict a patients life expectancy with great certainty, it is the patient's right to decide if they want to know. In my experience, physicians are seldom accurate unless the terminal event is within a few weeks.
I have seen many people told they had less than 6 months to live, put in hospice or hospice recommended, only to live a few years longer. Those who are told a shorter time, live expecting the next day, week, month to be the last rather than living their lives to the fullest.
Medicine has become a religion and does not serve that function very well. Live your life the way you want to, not the way some 'specialist' says you should. We only have one life, enjoy it.
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@kirk I knew a woman who had advanced breast cancer and was given 6 months to live. She was a nurse so she was able to research her particular cancer and exert a lot of control on her treatment plan. She lived 12 years. Anything you read online or get from your doctor is based on average survival rates. That won’t tell you much about your particular prognosis.
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I'm finishing up the first novel in a trilogy. I have two more novels to write. Plus another one that I left awaiting a final draft. I would like to have at least a rough idea.
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My husband has a progressive, debilitating neuro disorder with no cure (diagnosed in his early 40s). Prognosis for this varies from person-to-person, as do the cognitive, motor and sensory impairment. The disease may not kill him, but it's effects on keeping his airway safe to not aspirate is one adverse consequence of the disease. He has opted to not continue with the experimental medications prescribed to possibly slow or relieve symptoms, as many have had side effects worse than possible benefits. He has also opted to skip the annual expensive MRI scans, as he can easily tell if he has progressed. In other words, he has chosen self-palliative care. We have radically downsized and moved into a tiny, rental loft in a city with a vibrant downtown that is wheelchair accessible to almost everything he likes (coffee shops, bookstore, museums and parks, to name a few) and has mass transit that is also easily accessible for any interest he has in traveling outside of our area. I still have to work to provide private health insurance, and desperately miss not spending more time with him, but I am so happy my husband is living his life as well as he can.
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@NMV You are wise people. I only wish we had Medicare-for-all so you didn't have to work for the health insurance reason. My very best wishes for as many happy times for you both as possible. I can't say how much I admire you both.
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In December of 1994, I was given a prognosis of 6 months to a year. It was the second time I had been given such dire news. I had advanced AIDS. I was a walking skeleton. I was sick.
With this documentation in my medical chart, I sold my life insurance at 80 cents on the dollar. I moved from the cold north, and eventually ended up in an AIDS hospice run by Catholic Charities. That was 20 years ago. I know how unique my case is. But I knew then, and know now, how important that prognosis was to my well being. I didn't know what the length of my days would be. But I had the freedom to embrace the life I had, in all it's limitations. And that made all the difference.
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@JohnMcFeely This is the only happy AIDS story I have heard. Thank you for sharing it.
Health and happiness to you.
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Having lost several friends to cancer I have learned this; whatever path that person chooses it's best to join them on it. If's it's denial, then deny, if it's acceptance, then accept, it is their journey, not ours.
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@Holly ~
What wisdom you've shown in your comment. Thank you.
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not considered was the harmful situation should the immediate family know prognosis when the patient does not want to know. if that were the case, it would have terrible consequences. imagine the conflict of knowing approximately when your loved one will be gone, yet acting as if you have no knowledge of same. your expressions will belie the devastating truth you are about to face.
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I’m concerned that a dire prognosis, which, for whatever reason, may be inaccurate causing an apparently terminally ill patient to give up hope. I have known several people who outlived such prognoses, some whom are still ticking as we tick, so it seems dreadfully unfair to consign someone to eternity when there is no way of really knowing. My wife is a rheumatologist, and I know she ponders how to communicate rheumatological symptoms that may indicate something as sinister as malignancy and to painlessly tell someone of the potential who thinks they just have arthritis.
I think a salient issue is how prognoses are delivered. Purely statistical means, based on odds of a five year survival, undermine the prospect of how well an individual patient will respond to treatment, especially in a burgeoning age of personalised treatments. If a patient does not want a prognosis, that is his or her decision, but no prognosis should be final until everything is exhausted by way of treatment.
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In 1995 my wife was diagnosed with stage 4 ovarian cancer... surgery and removal of a huge tumor was followed by a year of chemo using taxol. Been with me ever since and her prognosis was not more than two years so as smart and knowledgeable most doctors are nobody really knows
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@JD
Please. “Nobody really knows” mis-interprets the importance of the Prognosis itself.
It is NOT the utility of a Prognosis to tell any ONE person “how much time they might have to live”. (Although I accept that many patients and their loved ones “hear it that way”.). Prognosis is the accumulated experience of an enormous effort on the part of a remarkable range of medical workers - epidemiologists, radiologists, pathologists, and expert sub-specialists in the area of the person’s Diagnosis, to name only a few - to understand the medical issues the person and the physician - are now facing. This always includes focusing Prognosis, as intently as medically possible, on the exact type of illness involved and it’s extent or manifestation in the person’s body. Whether the individual wants to know this information is another question entirely. However, should the person want this information, a discussion of Prognosis between a patient and a responsible and competent doctor should provide one of many (or perhaps few) intellectual inputs to help that person formulate for him/her self how they may proceed in the presence of the Diagnosis. Please note here I do not necessarily mean this discussion should be had with the specialists whose experience provided the Prognosis: the Prognosis discussion should be with the doctor - and in my opinion it MUST be with a doctor - who the person trusts most.
PH, MD (retired)
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I've seen enough to believe that knowing more, and doing more, is better. Leaving the question, "What if" hanging after you're gone is no favor to the still living, nor, is "unexpectedly" running out of time any favor to those who DON'T beat the averages...
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People are unique. Everybody wants to live their way. And people also want to deal with disease and death in their own ways.
Doctors need to be more aware of what info people want and what they prefer not to hear. Just as doctors now understand they are partners with a patient in terms of treatment, they need to be partners as well in terms of the flow of information (or not).
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Thank you for this well-written piece; it highlights how information can really impact quality of life after a cancer diagnosis. I'm an oncologist and I grapple with such discussions every week. One possible outcome of the Prognosis Declaration not directly addressed here, is how it could affect the quality of one's death. For example, if you forego a prognosis discussion, might you be under-informed when it comes time to decide hospice care versus continued, but likely toxic and marginally-beneficial, anti-cancer therapies?
When I worry that a patient may gain little from more cancer-directed therapies, I find that the discussion of prognosis is the most useful tool for guiding next steps. In fact, this discussion is frequently what protects a patient from dying in an ICU as opposed to dying at home. When life's length is clearly limited, our best option is to fill it with highest quality time that we can. At times, I feel compelled to push patients past what they're comfortable discussing so they can avoid harm or a potentially disastrous death.
My overall take is that there are likely trade-offs with the Prognosis Declaration. So why not study it? Yes, knowing more can serve us less, but the opposite could also be true. You conclude that such a declaration may not become standard practice, but why not try? Even if it doesn't pan out, I bet we'd learn a lot about how the timing of, or absence of, prognosis-sharing affects outcomes.
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@D'Armitage Absolutely agree with you and dearly hope the Prognosis Declaration is studied so we can learn more. We were compelled by it being a loving response for a woman who was dying and didn't feel she had adequate choice about the flow of information.
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This article made me think of my mother immediately. She was continually in denial about most things. I grew up to the cadences of "Oh, it'll get OK on its own" or some variation thereof. "It," of course, never got OK, and so the optimistic denier created a pessimistic micromanager with me.
One thing she instilled in me and my brother from our earliest years: If she ever got a fatal disease, we were not to tell her. "Otherwise," she said, "I'll die right then."
When she got old and went to the hospital for dehydration, the hospital insisted on running tests. Ten days later, the doctor gave me the news: cancer on the thyroid, one breast, kidneys, and colon. Official diagnosis was colon cancer, which is what killed her father. My mother had of course never had her colon checked out--better not to know anything--and it was believed to have originated three decades before.
I forbade the doctor to tell her, and I brought her home. I chose a hospice company that also offered home health and told the hospice workers to pass themselves off as regular heath care workers. It worked. My mother lived four months, seemingly quite happily, and died in her sleep. The day before, she had said, "I'm feeling better!"
My mother was 91. Had she been treated in her sixties for colon cancer (1980s), would she have lived so long? I don't know. But I do know she never let reality rear its ugly head even when she in fact was dying, and from what I can tell, that served her well.
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@Norma McL.
What a great daughter you were to your Mom. She sounds like she was quite a character.
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@Norma McL.: 91 is beyond an average lifespan -- a good long life. Your mom seemed happy up until the end. There is no guarantee that treating her colon cancer would have bought her more time -- and it might have made the time she DID have painful or anxious.
I think in her case, your mom made the best decisions for herself
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My husband & I lived with his slow growing, inoperable cancer for 10 years, 8 months. No death timetable was given. We made a conscious decision to travel worldwide during breaks from work. Not wealthy, we used my salary for those monumental, unforgettable trips. I was banking memories, he was joyous seeing the world through his artist’s eyes. He never spoke of the monthly visits to MSK. Always Peter Pan, he played with his grandchildren and died peacefully, never saying goodbye.
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It’s hard to predict how a grim prognosis will affect different people.
Clearly, some will be so demoralized that they won’t want to fight, let alone enjoy whatever time they have left.
On the other hand, some will react as Alex Trebek has, determined to defy the odds and go about life.
Similarly, one member of my own family was diagnosed years ago with terminal cancer and given a short window of life. He was resolved to prove that estimation wrong, and has set out to do everything possible to extend his life. He had the fortune to qualify for a number of clinical trials which have bought him time, and has also taken other steps to preserve his health, like exercising vigorously and changing his diet. Most of all, he is relishing being alive like never before, and is triumphant that he is thriving on what he was told is borrowed time.
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