The death debate: a response from Richard Smith

richard_smith_2014I’m sorry that I’ve upset many people who have cancer or who have had a bad experience of somebody dying of cancer [see previous blog]. That wasn’t my intention. I was writing for The BMJ and so primarily for doctors. My main intention was to urge people to think much more about death and dying because I’m convinced that will be good for all of us and for our society.

I declined all interviews, but I want to clarify some points and respond to others.

I must start by making clear that the views I expressed are wholly my own, as in all my blogs. They do not reflect the views of any of the many organisations with which I’m associated.

1. I know that dying of cancer can be a horrible death, and I’ve experienced several such deaths. I also know that while cancer is primarily a disease of old age, it is particularly tragic when a child or young person dies.

2. I have written a much calmer and more measured piece on “A Good Death,” and some might like to read that piece.

3. Death from any cause can be a horrible experience, made worse if you have never prepared for it. To our ancestors (and not very distant ones) preparing for death was central to their lives, and I think that our society—and that of most other developed societies—is diminished by our denial of death. I think it’s healthy that my post caused more discussion of death.

4. My central point, almost too ridiculous to state explicitly, is that you have to die of something, so it’s a question of the least bad alternative. We do seem to have reached a point where some behave as if death is not inevitable, and there is a sense that medical research and doctors are launched into a misguided attempt to defeat death. Immortality, all philosophers and writers agree, would be unbearable, and without death every birth would be a tragedy. For me, death gives life meaning, a narrative arc.

5. It’s true that you have limited choice over your cause of death, but we do have some choice. I take a polypill every day, which reduces my chance of dying of a heart attack, stroke, or heart failure but therefore increases my chances of dying of cancer or dementia. My last choice of cause of death is dementia, although as we make “advances” that may be what we all die of—at vast expense.

6. I deliberately stayed away from the debate over assisted suicide, but that is, of course, the main way that we could choose our cause of death.

7. Doctors have generally been less negative about my blog than non-doctors, and most doctors recognise the problem of going on too long with trying to fend off death. There is evidence that doctors choose to die differently from their patients. Few people would choose to die in intensive care, but increasingly that’s where people do die.

8. One of the reasons why my blog attracted so much attention was my dismissive final comment on wasting money on cancer research. People seem to have thought that I meant spend nothing on cancer research. I didn’t. I’m not against cancer research and have even done some in my career. I do think, however, that we might get a better return on our investment by spending less on cancer and more on the many other areas of research—like neurological and mental health issues, and unglamorous areas of research such as health systems and nursing. We would certainly achieve very much more if we were to invest in making sure that everybody in the world got simple, cheap, evidence based treatments rather than in novel cancer drugs, many of which extend life by a matter of mere weeks and are hugely expensive.

9. Finally, I return to the point that we should all think about our deaths, and we should all, old and young, have advance directives (living wills) that specify our wishes about the end of life. If you haven’t got one, I urge you to do so. You might need it sooner than you think.

Richard Smith was the editor of The BMJ until 2004. He is now chair of the board of trustees of icddr,b [formerly International Centre for Diarrhoeal Disease Research, Bangladesh], and chair of the board of Patients Know Best. He is also a trustee of C3 Collaborating for Health.

  • Dear Dr. Smith:

    Thank you for your apology.

    I apologise, in turn, for some of my more pointed comments aimed at you.

    I have a disability and have had a lifetime of dealing with doctors and nurses – not to mention the experience of seeing my brother die of cancer and now another family member suffering from dementia.

    I’m forever grateful for the excellent medical care that I and my family members have received over the years.

    At the same time, I know personally and viscerally that sensitivity (to both the physical and psychological needs of the patient) is indispensible to good medicine.

    Perhaps your original post and the resulting upset will serve as an important reminder to all the medical professionals who read it to remember to be sensitive to the thoughts, wishes, and feelings of their patients. (Ironicallly, I suspect that might have been part of your intention from the beginning.)

    It’s probably also a good reminder that in the Age of Social Media even a blog post meant for a specialist audience can find its way to the general public.

    In recent weeks Atul Gawande has been speaking and writing eloquently about the need for doctors to have a more nuanced view of mortality and to work with their terminally-ill patients to develop treatment options that meet their patients’ needs and desires as best as possible.

    Perhaps you and Dr. Gawande should join forces.

    Yours sincerely,
    Mike Broderick

  • Ann Cameron

    Dear Dr. Smith,

    Thank you for your honesty!

    A friend whose young wife had been killed told me that her quick death had been the most painful he’d ever experienced.

    I think you are right that death from cancer is far from the worst. The worst, I think, is death from chemotherapy, which in the US also brings families to bankruptcy.

    My husband with lung cancer refused chemotherapy because he feared it would leave him with no quality of life. I believe he assessed his risks much better than the doctors who urged him to take it with a supposed 30 percent chance that it would allow him to live five years. Of course his decline from cancer was very painful to me and him emotionally. He was very brave and maintained that death was much harder for survivors than the person dying. He got adequate control of physical pain and was active and engaged with me and those he loved up to five days before his death.

    My husband had been wih his best friend, who. when diagnosed with luymphoma. was strong and active, but reduced to an invalid within a month of starting radiation and chemo.. His decline was much faster than that of my husband later on. Radiation severely burned the cells jn his throat. He couldn’t swallow without pain. He couldn’t eat. It was painful to he didn’t do it.. With all this treatments, he died faster than my husband did with no treatment, and was morose, depressed and miserable for the entire rest of his life.

    After my husband died, I got metastazied colon cancer and cured it without radiation and chemotherapy. by drinking carrot juice. I turned to extensive research in biocehmistry journals to discover why carrots can cure cancer. I shared the research, which is considerable. on falcarinol, luteolin, and nutritional epigenetics, in my e-book, Curing Carrots with Carrots.

    For almost two years now, CT scans have repeatedly shown me to be cancer free.

    I turned down chemotherapy: though my oncologist recommended a 3 drug combo of chemo, FOLFOX. On the US government’s website –an extremely valuable and reliable site to find out what a particular chem will do to you– I looked up the damaging effects of FOLFOX. Very common occuring to 20 to 100 out of a hubdred are diarrhea, constipation, loss of appetite, loss of hair, neuropathy (burning senations in hands and feet). Less common occurring tov5 t0 20 out of a hundered were trouble walking, rouble opening the mouth, , loss of balance, loss of hearing, stroke, seizures, worry, confusion and depression.Least common, suffered by 3 out of a hundred people, were new cancers stimulated by the chemo itself. FOLFOX is carcinogenic..

    Oncologists do no one any favor by failing to tell cancer patients what they are getting into when they brush over the damages and complications from chemotherapy and the likelihood in most cases that it won’t save their lives.

  • I understood you completely and thought your article pretty spot on. I also didn’t understand what all the fuss was about considering it was an expression of a personal opinion – something we are all entitled to hold. As I have severe COPD perhaps I was bound to understand you better and not be shocked by any comments re money and cancer. We die at a rate of one person every twenty minutes in England and Wales yet no real headway has been made compared to diseases such as the cancers and cardiovascular. I hope I go quickly with pneumonia one day, and not through a long slow suffocation. But I am ready for whatever my future holds.
    Sincerely yours, Vanessa Smith. COPD patient and advocate.

  • Richard,
    I don’t see this as an apology – which is not only due to patients and those affected, but to all people. Because cancer might affect anyone.

    What would help the objective problem here, of misinformation, first would be to acknowledge progress in oncology over 30 years. And to break down the false dichotomy between cancer care and a “good death.” Besides that patients today benefit from better-tolerated and (far) more effective drugs, modern cancer care includes palliative care. As for oncologists not thinking enough about death, that doesn’t mesh with mine and others’ experiences.

  • Shawnna

    I am in 100% agreement with your underlying premise. In fact, I’d love to meet you to chat more about it. I just finished reading “Being Mortal” by Atul Gawande, and I sent it to both of my adult sons to read before it becomes too late. If we all simply embraced death as a natural part of living, we’d never have devised the all-too-common approach of ‘do everything’ within the medical care community.

    KUDOS to you for speaking out and KUDOS to you for standing by your position.

  • Living a “good” life is as subjective as what one perceives as a “good” death. I suspect that your perception of cancer as a good death is unique. I also do not think that effective allocation of research funds or the well-giving of funds and resources by individuals toward cancer research and treatment is mis-spent even if these new therapies are costly. Most new technologies becomes more sophisticated and less costly in time; instead of a mainframe that fills many buildings for a billion dollars, we can access the same information on our smart phones for a nominal fee. My dad, a computer programmer, who died 35 years ago of lymphoma, told me once that someday everyone will have access to a computer and the whole world will be able to talk to one another through these devises. I predict that in the next 35 years, most cancers will be reduced to chronic conditions and all Americans will have a choice to live the “good” life instead of your vision of a “good” death.

  • EMoonTX

    Richard Smith, you are still writing as if you are superior to those who read your essay and disagreed with it…as if your opinion were factually superior to theirs. That’s part of what the anger is about–what seems like arrogance and entitlement. You do not have the right to define what anyone feels is a good death. You are wrong in thinking that wanting to attempt treatment that is not certain to be successful = denial of the reality of death. The fact that (some) doctors agree with you does not mean that all doctors do, or that doctors’ opinion about quality of life and the effectiveness of treatment should be considered correct. (I know doctors who are opposed to “giving up” even when the patient wants to say “Enough already.” Patients who refuse treatment, early or late, get flak about it from their doctors until they’re already half-moribund.)

    My opinion about a good death for me is just that–my opinion for me, not for anyone else, and not of importance to anyone else. Your opinion about a good death for you is fine–but you erred in trying to push that notion on others. You erred (again in a form of arrogance) in thinking that publishing in BMJ meant only doctors would read it and thus you could count on a favorable response. (Publish online, and it’s going to be read by people not in your target audience. You should know that, as a professional editor.)

    I understand and accept that you did not intend to do harm with your essay, but you need to realize that you did do harm, and that the people who are most upset with you cannot be fobbed off with comments about denying the reality of death (that’s even more insulting, especially to cancer patients and their families. We are very aware of the reality of death and the fact that everybody dies sometime. We are also aware of the cost of care, and the fact that (in the US anyway) there’s a large political force that would like non-rich sick people to just die and get out of the way and quit “wasting” resources. What we would like to see, from a person addressing doctors on the topic of death, is respect for the people who are facing death–compassion, respect, awareness that their values still matter to them. Perhaps you can come to understand that.

  • trentclinic

    I completely disagree with your unrealistic and romanticised
    view of cancer death. In more than 15 years of frontline experience with cancer deaths, I have never knowingly witnessed a peaceful cancer death which was free of distress to everyone concerned. I have never envied a cancer death and wished that I exit the life’s stage by that way.

    But on the other hand, I am utterly dismayed that you are being asked to apologise for causing “generic offence”. Are we not in favour of freedom of expression? Taking this, in principle, to the extreme, (having just watched a 24 hour news channel), do we not support the freedom of expression of Charlie Hebdo team even though one might not agree with their views and actions.

    Competing interests

    I am a ‘borderline atheist’ but ‘socially’ a Hindu and come
    from multicultural India where there are public holidays for festivals of all major religions and the civil law applicable depends on one’s religion!

  • kathy kastner

    I applaud the (perhaps unintended) conversation/debate/emotions your article(s) spawned. As a layperson immersed in end of life education, the more we’re prompted to become conversant with ‘best ways to die’ and to investigate repercussions [good and bad] of medical interventions – whether cancer, kidney and heart failure, COPD or Dementia – the better equipped we’ll be to make meaningful Advance Care wishes. THis is not to say that just by talking and knowing our ‘wishes’ will come true – or even be honored – but putting thot and discussion to this obviously emotional and highly personal topic is becoming increasingly necessary. For the sake of humanity and a humane end of life experience. Kathy Kastner

  • Corranne Wheeler

    I’m 18 with every single female family member having beaten or died from breast or ovarian cancer aged under 50 for the past three generations. Even my doctors have pretty much said I am screwed for getting cancer one day. Thank you for pretty much saying that I should just get over it and write my will now.
    Cancer is not a pretty way to go. You entirely romanticise it. Yes, dementia is awful. My grandfather had it. But he had a life. If we ‘stop wasting’ money on cancer cures, thousands of people will not have anything. Your idea that everyone will live until they’re 400 million years old (okay, maybe a slight exaggeration) and waste more money/live like a human being is ridiculous. Why should we bother treating anyone then? What, in fact, is the point of doctors? Surely, we should just let everyone die.

    But the fact that you say this just proves that you should not be a doctor. If my mum’s cancer specialist had turned around to her and said ‘You should just go and die actually. It’ll only get worse with age,’ it would’ve killed me. A large number of people with cancer are not those who are 83. They are 20, 30, 40. Healthy people with lives still. Why should we abandon them? This is just disgusting and only supports my evaluation of you as a heartless person.

  • Joshua Werstler

    1) It is tragic when anyone regardless of age dies of cancer, however like you said it’s less tragic when a young person dies but what about the 40 year olds and the 50 year olds? They lived long enough lives?

    2) I’ll comment on that article over there.

    3) It didn’t cause more discussion about death it inflamed those facing said death or those by the sides of the ones that did it. You think the caretakers don’t call into question their own mortality while caring for loved ones? And the way anyone plans for death isn’t as much as they don’t want to face it but something you don’t even start to save for until you do get older.

    4) And you trying to state cancer is the best option is ridiculous and you still cannot grasp why that is. And I really want to say I hope you go through cancer to see why what you are saying is so damn offensive. But I’m going through my cancer fight and I’ll die from it I would never wish this on anyone.

    5) You are afraid of dementia? Then put yourself in a brain cancer patients shoes. The last 6 moths of my life will be wondering who the hell is around me until I eventually hemmorage, I’m not lucky enough to live in a state within the United States that allows assisted suicide.

    6) I am all for it.

    7) Let me ask you were these Palliative care doctors or hospice doctors/nurses? And a lot of people would tell you they would want a DNR if they were actually explained exactly how they would live sure you would get the people that generally want to live forever. For the most part everyone would sign a DNR if they would be explained a little more given a good time to think about it.

    8) I don’t think you understand even now why your blog attracted so much attention, and I’m not sure weather to feel sorry for you or just pity you. It got the attention it did because you wrote a sensationalist article about romanticising cancer death and knowing the statistics on cancer I’m not sure if this was just very planned or just the “doctors speak” you know all clinical no emotional.

  • Dear Dr. Smith,

    1. Thank you for expressing your viewpoints about two very difficult topics: cancer and death.

    2. I would like to quote an excerpt of your previous blog post.

    …”stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.” — Agreed.

    3. I would like to add: let’s stop wasting billions on cancer research which will be hidden from the public eye. (1)

    – Many (>50%) unpublished clinical trials completed a long time ago (over three years).
    – Many (>50%) clinical trials without available results in public clinical trial registries (e.g.,
    – The majority (all? – maybe there is no exception to the rule here) of published clinical trials are withholding patient level raw data — necessary for independent analysis of the study conclusions.


    Jorge Ramírez

    1. Ramirez, Jorge H (2014): Are large clinical trials (phase 3) of experimental cancer therapies sufficiently disclosed? No. figshare.

  • Pavel Faigl

    @trentclinic:disqus Allow me to say that I have personally witnessed a peaceful cancer death which was free of distress to everyone concerned when our cousin came for holiday and died in our house. We nursed him all the time and he died peacefully in my house, and thanks to painkillers (Endon, Fentanyl and finally Endep (what an appropriate name!) and morphine) without any pain…with peace on his (and on our) faces. Nice to hear about the multicultural India,,,and hope you will keep a peace there as well. Greetings.

  • jscott

    So you cured stage 4 colon cancer with carrots? What grade was your tumor? Where was the metastasis? Did you have surgery? Can you provide us with a scanned copy of your pathology report?

    I will tell you my story, and unlike yours (allegedly), it’s the truth. My wife got five very good years after she was treated for breast cancer- surgery, chemo and radiation. To prevent recurrence, she went all in on a vegan diet, supplements and juicing. It didn’t work. That cancer came back and killed her very quickly. Nevertheless, we were thankful to have those five years.

    As for Dr. Smith…news flash. death from cancer is awful and horrific. I know. I was there. I think in being clinical, he has lost his humanity.