Dr. Scott Berry, a medical oncologist at the University of Toronto, has written an interesting essay in this month's Journal of Clinical Oncology entitled "Just Say Die." His point is that doctors are hesitant to use the words "die" or "death" when counselling patients who are in the process of doing exactly that - dying:
Die is a short, simple word. The problem is that I rarely use it when I speak to my dying patients, and I don't think I'm alone.
According to Dr. Berry, one of the reasons why we eschew the "D" word when talking to patients about their prognosis is to avoid upsetting them with the use of such blunt terms since they are already in distress as it is. Another explanation is that we doctors find it awkward or unpleasant to bring up such bad news, which the author believes is a reflection on the perverted way our society identifies death as a distasteful subject, one that is almost taboo and should be identified with euphemisms. He remarks on other possible explanations:
It is not hard to see why physicians might have trouble talking about death and using the word death; we live in a culture where many physicians and patients may see death as an admission of failure or of giving up.
For the patients we have known for many years and with whom we have developed deep bonds, we may not want to use the word "death" because we are starting to feel our own sense of loss and the beginning our own grieving.
I understand where Dr. Berry is coming from with his request to speak more clearly about dying when counseling the dying, but I have a twist on his advice. First, here is his approach:
It's time to take the next step in opening up the discussions we have with our dying patients. The next time you must let someone know they are dying, the best way of doing this may be to say, "You are dying." It's more than just semantics. Using the word "die" will clarify our conversations with patients and let them know that death doesn't need to be considered unnatural or a failure.
Telling every patient "You are dying" seems too formulated to me. It pays no respect to the tremendous amount of hard work the patient has put into the mind, into developing and maintaining a hopeful and courageous attitude during his or her illness, an outlook that reduces anguish and perhaps even steels the body to fight on longer than it was meant to. I have seen the power of the mind and heart, and what it can do to support a body infested with cancer, and the results are impressive. I therefore respect the unique spirit that resides within each of us, and when I see this power still shining in a failing host who wants the truth I might just say this:
"Your body is dying, but not your spirit. The fire that blazes within you, that has allowed you to carry on so long with this disease, is still bright. It will not vanish until your body reaches its final breath, and on that day, on the day of your death, the person that inhabited your body will indeed disappear, yet it will live on - in the memories of those who knew and loved you. Such is the power of the human spirit."
Good post TCO. I think your piece at the end is very important as well to highlight what positive areas we can during a time of great change in a patient and families life. I am curious to see what you thought of the table included in the article. Over at Pallimed we thought it was witty but true. Even for clinicians in hospice and palliative care. We can't always say the "D" words either.
Your twist on Berry's article is not really "a twist" as he emphasizes making this a personal and compassionate discussion, and doesn't prescribe to the clinician what to say around the basic communication of "You are dying." I would imagine he would applaud your compassionate approach to the subject, and not think you were avoiding the topic of death via euphemisms as he is pointing out in this article.
Good comment Marn,eh. Thanks for sharing your experience.
Thanks for bringing more attention to this issue!
When my 83-year-old mom-in-law was dying of bowel cancer, her doctor could not use the "D" word with her, either.
Somehow, she was under the impression that all these last ditch efforts they were making--the massive doses of antibiotics to hold back her pneumonia, the surgery to insert a shunt to because her kidneys were failing--well, she thought all these things were done because there was hope.
Thing was, hope had left the building a month ago. The cancer had spread to her kidneys. It was a race between the kidney cancer and the pneumonia. Her kidneys quit first. Her doctor was straight with us, but not with her.
When her doctor finally screwed up the courage to tell her that she was in palliative care, that nothing more could be done, she made her peace with dying, said her good-byes, lapsed into a coma and died peacefully within 36 hours.
I have seen three parents through palliative care for cancer now--my father, my dad-in-law and my mom-in-law. The doctors were quite forthcoming with both the men. Their deaths involved a lot less physical suffering.
My mom-in-law's final month was grim. I sometimes wonder if her doctors had been straight with her if she could have been spared that, if she would have made her peace and left earlier.
I'll never know.
"Your body is dying, but not your spirit. The fire that blazes within you, that has allowed you to carry on so long with this disease, is still bright.
I commented on another blog regarding terminal cancer that even though it is sad, there still can be some astonishing demonstrations of the human spirit at it's finest when people have time to see the end coming and reflect on life in ways that the rest of us never will.
Dave Briggs :~)
I have no problem telling patients that they are dying. In fact, I believe, NOT telling them is doing them a disservice by not allowing them to prepare themselves and the rest of their family and finances.
I am all for hope, but I won't sugar coat a prognosis just because of some false sense that they will be that 0.0000000005% that will live through a life ending illness.
I owe it to the patient to tell them exactly what I think.
When I take care of patient after patient with full blown metastatic disease, or multi organ failure who remain full codes beyond all disbelief, I make it a point to tell them exactly what I think regarding life sustaining measures and how cruel and painful it will be for them when I break all their ribs, jam a tube in their throat, and then look at them every day from atop their bed in the ICU.
Telling them the same thing day after day...
We aren't there yet. You will have to lay here another day with a tube in your throat, your arms tied down and unable to communicate. In pain.
And when you are done with this phase of your critical illness, you have to go back to deal with your life ending multi organ failure, or your metastatic cancer.
I don't like Scott Berry's approach and I would fire him immediately.
I have incurable cancer, but that does not mean I am dying (of course we are all dying in the general sense, including Dr. Berry (a thought that is a pleasant one when thinking about him)).
Words have power, especially from a person precieved to have more knowledge and information than you do. If my doctor told me 'you are dying' I'd stand up and walk out, and tell him I wasn't going to pay him for that consultation, and if he persisted, I'd complain to the medical board about him.
I believe in the old adage, where there is life, there is hope. I have personally know people who have far outlived the doctor's estimation of their life expectancy.
A pox on Dr. Berry!
The thing said often that I dislike is, "you have failed treatment". It sounds like I have failed. I am a failure. It is my fault!
Please go with something like, "that treatment didn't work for you." "Even if it is, we don't have a treatment to cure this, but we can work to make you more comfortable." and, "this problem is likely to lead to your death, possibly in _______ (timeframe)."
Much of this difficulty seems to arise from our societal failure to accept that death does come for all things. We hide death rather than ackowledge it and fear to even speak of it (hence the lack of discussion of resuscitation preferences for many patients who are obviously dying). Partly, too, doctors, as people themselves, seem unable to accept their own mortality.
Dr. Berry's approach would seem entirely correct in a patient where the crux of the issue is whether to focus efforts on palliation or to forge ahead for that "0.0000000005%" chance of even temporary survival. Failure to acknowledge that this situation can even exist demonstrates a lack of recognition of the eventual death we will all face.
I was diagnosed with early stage breast cancer in June 2007. I liked Dr. Berry's essay very much. I would just like to mention the need for clear explanations when discussing cancer even when the risk of dying is fairly low.
Early on I had a discussion with an oncologist about whether I should have chemo or not. At the time I did not know much about breast cancer. We were discussing my risk of recurrence. I asked him what would happen if I had a recurrence. He said that in the case of a recurrence, "there is no cure."
My problem with the phrase "there is no cure" is that it is vague and euphemistic. People live for decades with some incurable diseases. Some incurable diseases cause disability but are rarely if ever fatal. Obviously, the same is not true of metastatic breast cancer. It should be said plainly that most women with metastatic breast cancer will die of the cancer eventually.
Since we can;t leave comments on your last post, I wanted to post here to say thanks for all of your insightful posts and great work you put into this blog. And congratulations on the courage it takes to end something when it is not working for you as opposed to just the expectations of others. That is a great accomplishment that many people should think of in their own lives. me included! Thanks Again!
The reason I would never say "You are dying" is that a minority of patients would be horribly offended or flip out. Even if a majority prefer the "straight talk express", it's not a net win if 20% of people are outraged, and you can't tell who is who for certain. I prefer to skip the grand proclamations and focus on getting people comfortable with their options - and if the only option is palliative care, then getting them comfortable with that idea. If they want to talk about dying I'll be more than happy to discuss it with them, but bringing the subject up disturbs many people.
One can't say that your blog is dying either. If you don't delete it, it will be here and you will be here in spirit and words. Best wishes. ..Maurice.
My husband and I were told he had now entered the final stages of heart failure - he did not hear it and I doubted it, so I had to go back and ask again - moral- we won't hear what we do not want to know, but by being told we were able to plan for his dying at home.
On his last day of life - when he was clearly dying I did not recognise it until he died. I still wish the nurse who had come in to put up his syringe driver had warned me. I nearly left him alone becuase he was at last calm.
We do need to know.
If you think telling an adult he is dying, imagine telling that to a child, or to the child's parents. However, I wholeheartedly agree that we owe it to our patients to be honest with them and tell them what is happening to them, no matter how difficult that may be. There are ways to say these things that convey the appropriate message without being overly harsh, though, and I think that's what separates the compassionate physician from the rest.
On an personal note, your blog was wonderful -- IS wonderful. It was part of what inspired me to start my own. I can only hope to achieve what you did. You will be missed.
Please don't leave us.
I found you when I was first diagnosed with breast cancer. I've gotten more understanding and comfort here than I have with my own doctors. I can't tell you how much more alone I would have felt without your blog. Your explanations of disease and words of hope and compassion really helped me through treatment, and still continue helping me today. You've offered a rare glimpse into the heart and soul of a doctor - a side of the medical world that patients don't always see. I know it's crazy, but I kind of consider you one of my doctors.
From the bottom of my heart, thank you for everything.
I was diagnosed with advanced stage ovarian cancer november 2005 - my primary care doctor didn't know about ovca and basically told me and my husband that there was really nothing that could be done - that I probably wouldn't see christmas. Then I met my onc - and here I am. I've been on chemo ever since, but I'm here.
Unfortuneately, my onc is a genious, but he doesn't really have a sense of humor.
I have enjoyed your essays thoroughly and hope that one day you will return.
Job well done, Dr. I am curious as to what will now fill your time?
This is really a comment in response to your 'goodbye' post. I will miss reading you and hope I can find you if you come back to writing. As an 'old old' nurse (32+years and still going strong) I have especially enjoyed an oncologist's view of life and medicine. Take care and be well. Meagan
As with the cancer patients who consider you one of their docs, I am a medical student who count you as one of my teachers. You've taught me about translating science and shown how to handle that sometimes lonely burden of caring for people with humor, humanity and an uncommon grace. I've started writing as a result of reading you and it helps me alot; so sorry to see you go. A+.
I am very sorry to see you leave. I always looked forward to your posts.
Thank you. I'll miss your writings and your wit. Maybe one day you will change your mind and start writing again. Let us know where you are. It's been interesting to read about the doctor's side of the story and just perhaps your writings have inspired your readers to speak up and be better patients. BTW, None of my terminally ill family members wanted to be told the "bad, bad" news of their impending death. They had a pretty good inkling without being told and would have just been more fearful with a solemn pronouncement. The only way to "soften the blow" is just not to bring it up.
I would consider it the final monstrous indignity life has to offer (disregarding my ownership of my life and death) if my doctor did not tell me plainly that I am dying when that time comes. And I don't want him telling me that in the presence of my family who will insist that 'where there's life there's hope' and will insist that 'everything be done' even though I've had lawyers draw up the papers stating unequivocally that I do not want 'everything done'. My family knows this, but that won't stop them. Maybe when I know my time is coming soon I'll head for the hills and stay til I'm gone.
Sorry, the url is:
I am very sorry to see you leave. I always looked forward to your posts.
Treat Cancer with Flavonoids:
Your blog showed a unique combination of intellect, compassion and wit.
Please start blogging again soon.Thank you.