Why docs don’t do death?

Posted by on Jul 6, 2013 in End of Life | 28 comments

Why docs don’t do death?

 

Today I continued my crusade to make end-of-life care a basic skill, as I gave the Introduction to Dying Lecture to third year medical students, for the twentieth time.  For me it is not just about pain control, family meetings and hospice care, but rather convincing physicians that they must change the medicine practiced for the last 100 years.  That medicine says that a doctor can fight all disease, give any treatment, spend every dollar, but, by the way, “I don’t do death.”

It is peculiar to me that doctors so often fail in this critical area of health. After all, people have been dying successfully for millions of years; one would think we would be good at it.  None-the-less patients often die in institutions, while receiving their fifth or sixth failed chemotherapy regimen, in pain and rarely do they hear the words, “you know you do not have to do this, it would be OK to be at home, with your family, and cherish the life you have.”  Why?

The first reason is the culture of cure, which has dominated medicine for almost a century.  Ever since ether, penicillin and the vanquishing of small pox, the default assumption is we can heal anything.  Polio, pneumonia, most heart disease and many cancers have fallen. Doctors get the clear message from medical schools that they do not have permission to “give up.”  Even textbook chapters on diseases that kill 95% of victims end without comment on how to treat all those people, as they die.  It is as if they simply vanish from this earth and as such must vanish from every doctor’s mind.   Neglected in teaching, death is a humiliating failure, and doctors learn none of the skills and attitudes to help patients in the last days of life.

Paradoxically, the fact that the average physician is a passionate and compassionate human being who went into medicine because he really cares, adds to the problem.   It causes doctors pain, to cause their patients pain, emotional or physical. Therefore, in a misdirected attempt to spare suffering, they offer false hope, which may be in the form of incomplete information or a therapy that has the smallest likelihood of benefit.  Many physicians believe that if they give bad news, their patients will give up, melt down, fall apart.  Lacking the training and experience of how to communicate tough news, not understanding that most people are wonderfully strong and can cope with even the most terrible information, physicians provide useless medical intervention and in doing so deprive their patients of the opportunity to live a vital part of life.  They care so much, they give bad care.

Docs contend that the complex issues raised in end of life discussions take too much time, especially with the increased volume and documentation of modern practice.   This is a paper tiger.   The problem of poor terminal planning is decades old, not a product of recent time-volume pressures.  More important, early introduction of palliative planning saves time by preventing the chaos, confusion and anxiety, which occurs when patients and families are suddenly, at the “last minute,” confronted with these emotionally challenging issues.

Physician failures in this area may originate from patient and family blowback.  Patients may attack the disease with inches of Internet printouts, third, fourth and fifth opinion consults and a refusal to consider even the remotest suggestion of “failure.”  Because of our society’s global phobia and lack of intimate experience with death, families may have little personal understanding of end of life events and therefore unrealistic expectations for cure.  This is often combined with a distrust of the medical community, suspecting profit at the core of every recommendation or fearing abandonment.  Can you say “death panels?”  Faced with this onslaught of combative energy and suspicion, physicians default to aggressive complex medical care, substituting another dose of “chemo-fix-a-mycin” for the truth.

Finally, it seems to me that doctors give end of life compassion and care wide birth, because they believe that to practice this type of medicine, you must be a spiritual person.  Physicians confuse the role of the clergy with that of the doctor, feeling that in order to counsel and support their patients a doctor must have a special understanding about mortality and the human condition.  How can a doctor work with the dying if they do not have “all the big answers?”  Physicians fail to understand that end of life care is a core part of medicine and that all their patients really want is honesty, symptom control, and the reassurance that the doctor will not desert them. The physician does not need to understand the purpose of man, God or the Universe; he just needs to understand his role at the bedside.  That is more than enough.

The exciting news, as I gave my lecture today, is that medical schools are now teaching end of life care, and that young doctors today, unlike previous generations, “get it.”   Not only are they perhaps more realistic about the broad issues of life and death, they seem more committed to a holistic view of medicine and their own relationship to patients.   This deeper understanding of their role not only in maintaining health and fighting illness, but also in helping patients find quality at the end of their lives, promises hope for tomorrow.

28 Comments

  1. Unfortunately, friends and family don’t know how to do death either. Often, when we are visiting a friend or relative with advanced stage cancer, we don’t know how to bring it up. Do we ask if someone’s dying? Do we wait for the patient to bring it up? Do we ask what the doctor had to say? Are we permitted to question someone’s choices to pursue treatment or stop…even in a loving way?

    When I spoke to my dad, in what wound up being his last week of life, he said to me, “Paula, I think I’m at the end of my rope.” I responded, “Well, Dad, what if that were true?” He said, “Well, there are some things I want to say,” I held my breath and said, “What, Dad?” He said, “This stinks.”
    And it did.

    • You make a wonderful point … the words we share at such important times may be simple, but feelings run deep, and the chance to share them of infinite value.
      jcs

    • sounds like you and your father had a great relationship. how fortunate he felt the freedom to tell you something that a lot of people could not handle.

      • It’s funny you say that. My next comment to him was “You were a great father,” His response: “Now you tell me!”

  2. My oncologist, whom I cherish & respect and who I believe respects me in return, thinks there’s a decent chance my cancer won’t cause my death; however, it’s for sure something will sooner or later. :)

    My very wise mother once said to me, “Penny, there are far worse things in this world than death.” She was right, of course, and I knew it at the time she said it; although I didn’t want to deal with the truth of it back then. (my father had just died and my too young husband was in the process). I hope I can remember her wise words when it’s my time to deal with the question of whether or not the better course is to keep fighting a disease process or not. I hope my doctor(s) are wise enough to accept it, when I do.

    I always enjoy your columns, doctor. God bless you and those young doctors you’re helping prepare.
    Penny Hayes

    • Thank you very much. In the end none of us really knows how we will respond faced with incurable disease and dying. However, I have no doubt that if we try to prepare, at least consider, it may make the journey easier.
      jcs

    • I am so very glad you have that bond with your doctor. As a hospice consultant, I always advise people to ask about their treatments in terms of quality. Is this curative or palliative? What will be the quality of life with / without treatment?

      I have a friend who asked his oncologist to just be honest. When it’s time to stop, when the treatments were no longer beneficial, he just wanted to be told so he could make some decisions.

      That is exactly what happened and I keep in mind that it is our responsibility to ask questions as well as to expect honest answers.

      I hope you are successful in your fight and it sounds like you are really on the right track with your health care team.

  3. “When you can hold life and death simultaneously without being attached to either outcome, then you will have peace.” My surgeon said this to me a few months ago as I was fretting about yet another decision. He has never shied away from the hard conversations which, at times, has irritated (and more) the other doctors on my team.

    BTW I am still way too attached to living ;)

  4. Nice piece. As always, the theory is easier than the practice, but the ability to be open about the possibility of death, and engage those close to you (which includes the medical team) on discussing what is important in terms of medical care, what to accept, what not to, makes a difference. Expect most of us stumble along a bit, hopefully not too far down the road, before arriving at a more realistic, humane acceptance of our prospects.

  5. Well said; thank you for this.

  6. I’m a pallative patient; only morphine and more if necessary. Now problems become confusing regarding Home? Hospice? Nursing Home? ER……When I’m in pain, my nerves
    go on hyper active. Lets just say I can sing some aria but one should close their ears. When do I call My Onc> ? Do I call him or call 911? He has my End of Rights Paper, hopefully right on top. Thank you for your help. Thou shall do no pain and then bring the students to these patients. How can one do no pain when it’s
    unbearable to keep living with beepers going…Blue codes ringing…morphone no
    longer works…What happens if one person doesn’t agree?

    • In the chaos of life, one step a a time. Only one person has to agree…. you.
      jcs

  7. Dr. Salwitz…….Thank you for your efforts to teach new doctors about the one constant in their future careers…..DEATH. We all get there one day. Hopefully that day is a positive, pain-free transition…and it can be. EVERY doctor has a moral, professional, and ethical responsibility to inform and discuss their patient’s true condition and probable outcome, even if that means “passing” in the near future. Patients need to know what their options and likely outcomes are and then make THEIR decisions for THEIR end-of-life care, which will then be carried out.

    Regards and Kudos……. Kristian Murphy, co-author “It’s OK to Die”…..OKtoDie.com

    • Thanks very much for your comment and for “spreading the word.”
      jcs

  8. “The culture of cure”… that also complicates a patient’s adjustment to a diagnosis of a cancer that has no cure. Particularly if we deal with stress with information we hunt, search and hope we find something our busy doctor has missed that will make the difference (thus one reason for your 2″ reams of paper mentioned). We deny, hope, struggle as we figure out how to wrap our minds around knowing that what we have has no cure, that on a fundamental level no matter what we do it is not going to change the outcome, aggressive nasty treatment or gentle treatment may not make much difference in the long run… as treatment, in this case (one of the indolent non-hodgkin’s lymphomas) doesn’t change overall survival, just disease free time.

    The story isn’t *just* about the end of life. The story is about what is done when a patient is given a diagnosis of an illness that will kill them – if they aren’t hit by a bus first. It is not about waiting until it is clear that nothing is left to try that will do any good, that quality of life is so deteriorated that stopping treatment would sense, that the patient will die soon… The story/lecture *should* be about helping a patient all along with the fact that they are going to die so that when the time is near they don’t need the “death lecture” (yes I realize this lecture was for the docs however the corollary is the death lecture they give the close to death patient, the patient who can no longer be helped other than in a palliative way).

    I am 2 years and 2 months out from the end of chemo for a cancer that has no cure (my latest in a string of cancers over the last 10 year, the other ones much more likely to be cured, and probably are cured, well except maybe one the other 3 cancer I was also dx’ed with in 2010, that one I haven’t reached the magic 5 year mark where the odds of relapse drop dramatically, but since I can only deal with with cancer at a time, and that one is not it, I am not obsessing about the ones). Anyway it took me about 18 months to get a grip and actually wrap my brain around the fact that I was going to die of this one; that chemo only gives me relatively symptom free life, not longer over all survival, that there is no “Right Choice” for the magic cure and probably it doesn’t matter what I do in the long run outside of using rituxan or equivalent.

    All that energy I spent trying to find the “best” treatment was a mental health treatment exercise, not a cancer treatment exercise… of course I only partly recognized that at the time. It sure would have helped if the oncologist had taken the time to give me the version of the “death lecture” relevant to the “you have just been diagnosed with a disease that will probably kill you” bombshell. Because, you see, this is about mental health as much as it is about a disease that will kill you. A diagnosis like this is an emotional earthquake. And earthquakes behave differently – some have a steady slow stream of lava, others are explosions that blow off the top of the mountain in one big explosion… and so patients react differently. Trouble is most doctors want the compliant, cheerful, happy, grateful patient, not one who is acting like the top suddenly blasted off the of my top volcano patient (the latter one was me much of the time – angry, anxious, stressed out…). I had to cope by myself.

    BUT then on occasion I am back using the literature search coping mechanism… In fact just this morning, based on something sent to a list I was on, I was googling a new “marker” (actually something collected as part of a normal CBC and diff) trying to figure out the implications for my likelihood of living 10 years based on yet one more new correlate with earlier death (mine was in the wrong direction – that now brings me up to 5 bio markers working against being one of the people who can land on the right hand side of the lifespan curve).

    I had the “stop treatment now” conversation with my aunt who was dying of ovarian cancer last summer. She told me,rather than someone else, “because I’d understand having had cancer” that she was ready to die, no more chemo, it was only holding the cancer at bay now (she had relapsed after a really short remission), not shrinking some of the tumors and quality of life was beginning to suck. She has not talked about it with her doctor (according to her he felt she could still have a longer life if she kept doing chemo) nor her kids (because she did not want to worry them). So we talked about the issues, hospice, how she wanted to die and I suggested that she bring this up with her doctor (she did), her kids (she never did). She stopped chemo. When she was actively dying I talked to my cousin and told her that her mother wanted to die at home. They brought her home and she died 4 days later.

    With my father he chose assisted suicide, illegal at the time. He was young. He has me ask if the catholic facility he was in (respirator unit of a nursing home, he had post polio syndrome and a hospital induced infection in his lungs he would not recover from) because he didn’t want to have my mom ask and it would be too hard for him to write out everything, chase people down… They allowed him to die this way. One of the harder things I have done in my life was both to ask for him and then give my permission (what I actually said was, “I don’t want you to die but it is your life and I know you have thought this through”. But I knew this is what he wanted because he had tried to talk to us kids about this about 2 years prior. We didn’t want to listen at the time. It isn’t just medicine that doesn’t do death well, it is society and family as well.

    It isn’t like I haven’t thought about death and how I want to die – and I am far from death at the moment so when I relapse I will choose treatment… It is that I have had to deal with the death aspect of all of this on my own and I want what I know no one can give me – HOW LONG?. Google is my friend here since I can’t seem to get my NIH comprehensive cancer center big name doctor and one of the top 3 cancer hospitals in the country to have a discussion with me about this (he says it isn’t time yet – well of course not medically speaking, but it is mental health speaking). On google I found what actually happens over time when people die (which is why I knew my aunt was in the process of dying even though her kids did not as no one at the hospital had told them). I have NOT been able to find exactly what causes you to die from the disease I will die of (one of the non-hodgkin lymphomas). I want to be able to pin down the odds (and I understand odds – I have a PhD) of living 5, 10, 15 years… I don’t have enough money to live in retirement until I am old. I’d like to use some of it to do things if I know the odds are low I’ll live 5 years or 10 rather than 15 to 18, on the other hand I don’t want to live in poverty while dying of this disease in case I am, in the end, one of the people who live longer. Do I find a home now for my 18 month old cat (a stray I hadn’t intended to keep but fell in love with her) while it will be easy to do so and gamble that I will outlive my other three 13 year old cats who will be much harder to find a home for because of their age?

    Because I am currently unemployed and will be homeless in about 2 months, do I cash in some of my already not enough retirement money to keep living here or move into my 13′ camping trailer that has no plumbing so I am not trying to live in that later when I am sicker but ran out of money? If I knew the odds were high I would be one of the unlucky ones and die at a younger age I’d probably choose the cash in some retirement money rather than be homeless. But since no one can tell me how long I will choose homelessness. This is part of dying too, not just the end of life hospice stuff.

    Dealing with the unknown is part of the dying stuff that I wish doctors would talk about; the death lecture they should give us when we are first diagnosed and the volcano first blows and we are trying to get a grip. The death lecture they should give us when, down the line, the volcano starts smoking a bit (like it did for me this morning) because we still think about cancer, dying, uncertainty…and still sometimes cry about this. In that respect I have found coping with having an illness I know will kill me “before my time” is like grief. At first the intense pain is frequent. Then over time although the intensity only reduces a bit, the length of time I suffer the pain is much shorter and the periods between the pain become further and further apart. And I can think about this without becoming emotionally involved (that being said I am crying as I write this because when you think about this, really think about it, it triggers tears – other times I can talk about this as if it is no big deal with no tears and trigger of painful emotions – but like dealing with grief it took a while to get to this point).

    Sure none of us know when we will die, but generally we don’t obsess about that. When we obsess is when we know we have something wrong with us that will kill us before “our time” whatever we perceive that to be. These “death lectures” need to address the point that a diagnosis of a disease that will kill us involves future death as an emotional aspect of the diagnosis, and the disease is not just a medical process where you address death near the end. Death begins with the diagnosis and the “Treatment” of the emotional process requires “death lectures” of their own, starting at day one and continuing through the medical treatment of the disease (and these death lectures should evolve over time as the patient’s needs concerning this evolve)… not just when it is time to stop treatment.

    • Dear Liz, You’re not alone for we are all feeling the same way. My adult children are
      helping me for awhile now to get my things in order. The ONE thing they can’t seem to do is let me take them to the cemetary for I already have my plots, and my baby
      boy is in one of them. I also find it too hard to go at all, but my X just had aurotic
      heart surgery, and he lives in Texas. There’s no one else but me.

      I remember when Dr “K” was helping all of his patients leave peacefully, I wanted to
      give him a Nobel Prize award. If there is nothing else but shots, chemo, radiation, and surgery,
      either we should have an option of leaving or use yourself as a candidate for
      experiments to help someone else.

      I’m crying myself because my last dog I adopted will have to be sent to the Rainbow
      Bridge today. She can’t move her back legs after I had her groomed on 7/4th. I adopted her at 8 years old from abuse, but at least she had 3 happy years.
      Why are the veterans so compassonate? For animal lovers, they are part of our
      families.

      My Mom passed in Nov in Hospice. She was just a shell of a sick person and had
      no recognition of anyone. The Hospice person went to the home to speak to her.
      She failed the test! They asked her where are you now? She replied “Bklyn”. That was 60 years ago. That was passing? After that she stopped eating and her body
      was shutting down. I feel they keep the patients that can’t be helped for the money.
      They’re the private places. There was aruging amongst the hospice doctor and her
      doctor. I know my Mom was in pain because she couldn’t open her hands up, and was blind.
      A Palliative patient

      • You carry a tremendous amount of loss. I am glad you are able to share some of what you have suffered, and perhaps gain a small amount of comfort. I am very sorry you are about to lose someone else you love. Odd, but you are right, vets sometimes seem better at it than physicians. Perhaps that it because our relationships with our pets are simpler, more pure and while humans relationships are so much more complex.

        jcs

    • This is one of the most profound “comments” I have ever read. The deep and painful lesson is that a person as highly intelligent and insightful as you has not been able to connect to a professional caregiver who offers treatment in realistic context. How can we walk a path, no matter how hard, if we are in darkness with only a small light to see our feet. One step at a time is not really how human’s journey. It is very bizarre to me that every patient who comes into an oncology office, no matter what day or what visit, is thinking about death, but how rarely do doctors recognize those thoughts and fears at even a basic level.

      Thank you for teaching me,

      jcs

      • You are welcome.

        You responded to another comment I wrote recently and invited me to write a guest blog entry. How do I contact you privately about this? Are you able to see the email address we used to sign up for following comments on individual blog entries?

  9. Thank you for this article. As a Health Care Worker the elderly often say “please just leave me let me die, I have had enough” due to being trained as a psychiatric nurse and psychotherapist, I am not afraid to talk about the subject of death. most patients are relieved when I talk to them and acknowledge what they are saying. Most health carers reply “you will be alright, don’t worry” . I say they they won’t they are old and want to die, it is what we do when we become unable to care for ourselves. No one wants to say the words, dieing, died, death and dead, we use words like, “I lost my….’ ” passed away” , please can we teach and help the professionals and family to use words that say what has happened or happening. I know it is a difficult time, with all the emotions that go with death and dieing. So I thank you once again for educating the medical profession.

    • The vital core of you comment is the “relief” that patients experience when given the chance to touch another person about their deepest fear.

      Thank you,

      jcs

  10. Thank you, Dr. Salwitz, and well said, Kristian Murphy! “It’s OK to Die” is an excellent accompaniment to this article and altogether an excellent book. I hope its circulation will grow because it makes a necessity much easier to complete.

    • Thanks for the recommendation.
      jcs

  11. Dear Liz, If you have a relatively pain free life, your MD will give you something that
    will give you possibly a complete pain free life. I enjoy my palliative care course I
    decided on. If the chemo works for you, then stay on it. We are all dying little by
    little everyday. The problem is we know.

    Do you have any family or close friends? I’m sure you can go into a clinic hospital.
    You’re not going to die in some tent. Call an organization for cancer, someone can
    help you.

    I have 1-1/2 cancers plus a slew of autoimmune problems. Why don’t you go to a
    Lymphoma research center? Everyone’s body reacts differently. The doctor told you you’re going to die? He/She’s words? My MD never tells me when I ask.

    Are you on anti anxiety and anti depressant meds? These medications should help
    you. If they don’t, they can change the mg or try a different med. I know an MD that
    strictly works on Lymphoma research. I just gave him a large donation. He’s in
    NYC at Roosevelt Hospital. His last name is Wiernik.

    Liz, regarding monies, if you were once married and now divorced, and he is over
    65, you can have his social security without him knowing. You would both be
    getting the same amount. If you’re unemployed, can’t you get unemployment money or disability monies?

    Stress is not good for cancer patients, and it seems you were having a real bad day,
    which we all have. You must try and calm yourself down. Go to your House of
    Worship. One time I was in the hospital, a Priest come in, a Rabbi, all different
    religions….I asked them all to pray for me. One time they were taking turns. :)

    Liz, in order for students to understand cancer patients and what they go through,
    a doctor should use a web camera with sound….so they see…not read….the patients.
    Let them see the vomiting, the bleeding, the pain, crying and yelling to die. Otherwise, they won’t get it. If they look at the rooms, some doctors will not look.

    I hope I’ve helped in some way.
    G-D Bless You~~~~

  12. On a lighter note, my aunt, at the age of 96 found she had breast cancer.
    She refused to have it treated. “I have to die of something,” she said.
    I hope I have her attitude when my time comes.

  13. So glad for so many of the points you make. For me, another excellent example of how social media is helping open conversations (I was inspired by a hospice and palliative medicine tweetchat to blog and log about my own learnings (as a non healthcare professional) about the repercussions of (many? all?) interventions. It’s something IMO we don’t even know what to ask about. And as you so rightly say: it’s an even more impossible task in a crisis situation. I’m hoping/hopeful that the NextGen will usher in a new open-ness – largely based on this Gen’s efforts. Thanks again for being bold. Kathy.

  14. That is awesome, Paula! What else did the two of you discuss during those final moments? I firmly believe that we need to have these discussions in a society where we cannot even utter the word “death” and resort instead to terms like “end-of-life”, etc.

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