Why not choose death?

New Jersey may soon vote whether to give doctors the legal authority to prescribe medications for terminal patients to take, if they wish, to commit suicide.  Incredibly, the macabre name of this bill is the “Death with Dignity Act.”  As an oncologist, as the first hospice certified physician in the state, as a caregiver who has sat at the final bedside of thousands, let me declare emphatically – There is no dignity in death.  Death is dead.  Death is not an action or process.  Life is the process and there can only be dignity while we live.  As long as our focus is on getting to death by the quickest route, we risk depriving the living of the opportunity to live with dignity.

The NJ Home News Tribune (Sunday 11/25/2012) presented four excellent views on whether this bill should receive our support.  Reduced to each argument’s essence these opinions are:

  • Rev. Bill Neeley (Unitarian): Choosing the time of one’s death, especially if one is suffering and terminally ill, is a matter of personal freedom and for intellectually intact patients should be an option.
  • Rev. Michael Manning (Catholic): Only God can chose the time of death, the bill threatens the physician-patient relationship and may be a slippery slope.
  • Roseann Sellani (RN, JD): Having this choice would improve honest communication about end-of-life between patients and doctors and give a vital freedom.
  • Donald Pendley (Hospice): The bill devalues the importance of life and distracts from efforts to provide pain and symptom control.

What is being said, in other words, is that because doctors communicate badly, or at least insufficiently, about end-of-life issues, and because doctors provide erratic and often inadequate comfort care for terminal patients, that patients should be given the freedom, and assistance, to die.  In addition, this argument hinges on the concept that for large numbers of patients quality, near the end-of-life, is not possible.  Therefore, this bill deems it reasonable to turn to your doctor and say, “listen, I do not believe you can help me live, why don’t you just help me die.”

This logic is flawed and places patients in great danger.  The first error is to assume that doctors do not and cannot communicate well about dying.  There is no doubt this is an area where the physician-patient relationship often breaks down, but there is also no doubt that it is an increasing focus of education and learning.  Medical students now routinely take classes in end-of-life care, physicians are much more focused on the skills necessary and the specialty of Palliative Care, for which communication is a core skill, is exploding.  For most patients and families basic information about their situation relieves much suffering and confusion.  Doctors can do better.  We must demand it.

The idea that most patients experience uncontrollable suffering at the end of their lives is without foundation.  With proper palliative care more than 90% of pain can be controlled, we can relieve anxiety (i.e. fear), shortness of breath, depression and most other symptoms.  In fact, recent data shows that many terminal cancer patients not only live better, but longer, receiving hospice care rather than active chemotherapy.  This bill deprives patients of these highly effective techniques by giving up and says to the physician there is no need to offer quality care, death will do.

Is suicide an individual freedom?  That is an ethical question far above my pay grade.  However, that is not the freedom proposed.  What is proposed is “physician-assisted suicide.”  That involves two people and their relationship and I have absolutely no doubt that the relationship will be corrupted.  Having been involved in such interactions every day for decades, if the active reach for death is on the table, the physician-patient relationship will never be the same.  Physicians and patients already struggle with end-of-life communication; I cannot imagine that trust will improve with the addition of assisted suicide.  The motivations of patient, family and physician will be suspect, tainted and goals distorted.

The physician-patient relationship by definition focuses on life, and the end of our lives is still about life, not death, and can be lived with quality.  To undermine the foundation of the physician’s role is to deprive the patient and family of that opportunity.  If we truly wish suicide to be a realistic alternative then perhaps someone else, like perhaps funeral home directors, should do it.  At least that relationship is clear.  Why does that sound ridiculous?  Because funeral homes are about being dead and doctors are about being alive.  Why don’t we just keep it that way?

20 Comments

  • JK
    Outstanding commentary, direct, precise and right on target.!!!
  • While for cancer care, I am with you on the need to focus on palliative care; not so sure with respect to some other diseases such as ALS and MLS. But you set out the issues and concerns very well.
  • TOM CHALLENER
    I was very disappointed by your article. I have read your summary's before, and found them to be so accurate. If you feel that you do not want to be party to help someone, who is not being helped. by the so called fabulous meds, and there are those, but why abandon any other dr. from doing so. Have you ever been in intractable pain, and 98 years. why would you deny others. It is not your call to oppose a bill that can help other's .
    • James Salwitz, MD
      My deep concern, after having spent a career treating people in terrible pain, is that this bill will result in doctors not giving good pain control but instead just letting suicide substitute for care. It will confuse patients that they cannot have quality life, and instead put pressure on them to end their lives. It also deeply confuses the role of what a doctor should offer, which is life and comfort. If the time comes that most patients that need pain control, get pain control, and there remains only a few patients who cannot be helped, then we can consider such an action. jcs
    • James Salwitz, MD
      My concern is focused on the massive number of people who at the end of their lives because of the failure of proper medical care receive poor control. I see every day patients who come to me in agony which has not been addressed who are already talking about ending their lives because of their suffering, when all it takes to give them back quality and an element of hope is listening, caring and proper symptom (i.e. pain) management. I have no ethical or moral issue with the natural freedom to end one's life when that is a rational alternative, but in my experience the primary focus of a compassionate physician should be to offer measures that improve life, not take it. jcs
    • James Salwitz, MD
      I am certain there is a balance; the problem in my mind is the failure, to date, of physicians to adequately address end-of-life quality and I see death as a weak alternative to life lived without suffering. jcs
      • Surely the question must revolve around our understanding of 'life and living'. To be rendered into unconsciousness or to a place of great illness from which there is no hope of recovery to wellness does not for me and a lot of people, equate with bringing comfort. If I choose to quit and shuffle off this mortal coil then that's all I'm asking of my society and my doctors. It should be my choice and no one else's...with the right to change my mind. Lx
        • James Salwitz, MD
          The right to choose one's future is vital and is a natural right. In my experience if a patient has the opportunity to live (by which I mean a state in which one is aware and can interact, learn, share and laugh) it is a choice most would make. We live for each moment and with proper care we can often provide the chance to live moments in comfort. I agree with you that the goal is not to live with some terrible terminal illness in an unconscious state. That is not "living", even if it is life. jcs
  • Final point..putting legislation in place to properly protect whilst allowing a controlled end should not undermine your goal of improving end of life care which is entirely laudable..blocking legislation that allows for choice prevents those who will not end their suffering by taking adequate pain killers from taking control of their own lives. I really hope that our communities can find a way to embrace both objectives with a compassionate heart.
    • James Salwitz, MD
      Compassion. You are so right. That is the key. jcs
  • Far as I can tell, the doctors I've seen have very little to offer but to extend life or palliate pain. The so called compassion is a self justification that keeps a gigantic industry alive. Doctors are not trained to study health, but only disease.
    • James Salwitz, MD
      You are absolutely correct that the "disease" model of health, needs to be replaced by a wellness model. There is so much to be done regarding prevention and health maintenance by getting back to basics such as diet, exercise and handling of stress. On the other hand, I have seen tremendous good and healing done by skilled intelligent compassionate physicians, who make a major difference everyday. Thanks, jcs
      • When will this paradigm shift occur such that our nation not go bankrupt? I've been aligned with or have surveyed numerous alternative therapies and the practices of industrial medicine and pharmacy has served to disarrange the best efforts at reform. Alternative medicine is in such disarray that it is threatened with dissolution. The paltry sums given to NIH for complementary medicine are ridiculous. While there may be many things to applaud in advanced studies, the fact is that medicine could be much simpler and cheaper.
        • James Salwitz, MD
          Absolutely no doubt that a more focused, health oriented medical system could be much cheaper. jcs
  • I see that I am perhaps off topic. And my own experience in being honest with myself is that many days the value of life escapes me. Other days, not so bad. History shows medicine has been a lot worse in the past. The ethical issues are more complex today for sure.
    • James Salwitz, MD
      The ethics are indeed staggering. jcs
  • Liz
    I know I am late in replying as this post is 5 months old, but I am only now going back and reading old blog entries. As I think about the deaths in my family and the entire assisted suicide thing I find that many relatives have taken steps in that direction (skip the examples if you want to get to the point)... 1) my grandmother always said if she got "like that" shoot her like a horse. Instead she spend 7 years in a nursing home blind (due to failure to give her her glaucoma meds often enough), deaf, bedridden due to terrible arthritis and senile. Fortunately senile. I hope that means she didn't suffer as much. Her kids couldn't let her go and kept insisting on hospitalizations to fix problems that could have killed her had they not been treated. Her husband had died of cancer (he was an engineer who worked with x-rays early on before people knew how dangerous they were) many years prior and before I was born. He died at home. 2) My other grandmother spent an equal number of years in a nursing home, her mind intact, treated for depression using shock therapy multiple times, pleading to be allowed to die. Her husband had metastasized prostate cancer and died at home 3 weeks after the diagnosis. She wanted her death to be quick, not dying slowly (metaphorically speaking) in a nursing home. 3) My brother, we thought for years, had committed suicide in his 20's. He lingered several days and arrested and was not revived in the middle of a brain scan that showed that little of his brain was left. We later found out his wife had murdered him. 4) My uncle was pulled from life support by his wife and kids due to no hope of recovery after a colon cancer chemo catastrophe that destroyed significant portions of his lungs. 5) Two aunts chose to stop treatment after cancer relapses, where quality of life was poor and recovery was not going to happen. One, who had been actively anti guns her entire life, bought a gun to commit suicide if she so chose (she did not, she did choose to stop eating and died 3 months later - she also belonged to the hemlock society, as did my dad. They had conversations about end of life and ending their life), the other, who was afraid of end of life cancer pain but also hated the quality of her life with chemo, stopped treatment and died 4 months later. 6) My father committed assisted suicide when he had a lung and bowel infection he would never recover from that would eventually kill him (he had had them for 4 months), was on a respirator, fed through a tube in his stomach, was bedridden and at 6'1" was down to 98 pounds. He had had polio, had post polio syndrome, was fairly disabled prior to the infections. He also was a minister. He stated to me that he no longer knew if there was a heaven or not, but he was ready to die. He was not depressed at the time of his choice. 8) Another uncle was lucky in one sense - he escaped a lingering death due to drowning after having a heart attack while snorkeling. Unfortunately for him had he been on dry land he probably would have recovered and gone on to live a number of healthy years. 9) Another uncle had a life long lung fungus he contracted in while in the military and he died in his sleep without any medical crisis beforehand. What most of these deaths have in common is choice about how, and sometimes when, their life will end. Some were passive suicides - stopping treatment, stopping eating, pulling tubes but not administering anything to speed up the process . My father's was passive in the sense he had the respirator pulled, but active in the sense he was administered morphine - not an overdose by normal dosage for a non-repiration compromised person, but an overdose when you have about 1/3 of your lung power due to polio and on top of that have antibiotic resistant pneumonia). Here is the thing about suicide... With my brother, in order to come to terms with his death, all of us (me, my siblings, my parents) had to somehow come to terms with suicide. What we all agreed on is that somehow his suicide removed a barrier concerning suicide. It now has to be rejected JUST LIKE ANY OTHER CHOICE when considering options. We all resent that. (Of course 10 years later we found out he had been murdered - his wife tried to murder their 13 year old and was screaming at her that she had gotten away with murdering her dad, she'd get away with murdering her - fortunately my niece escaped- but the "damage" to the family had already been done on the suicide front.) THAT is the problem I see with assisted suicide - the burden is lays on the people left behind. On the one hand I believe that people should have a choice about end of life issues, my father included - and I didn't want him to chose suicide, despite knowing his wishes and despite knowing he was going to die anyway and was miserable. Despite knowing he had considered his choices for at least 2 years. Would I have been any happier had he just pulled the tube and "let nature take its course" rather than also get morphine? I have no idea. In either case he would have died. I fail to understand how it is more ethical to just pull the tubes, or turn off life support, than giving morphine - in all cases you end up dead. Was he not being assisted in dying just by the act of pulling the respirator, IV and feeding tube? How is that act any different than then adding morphine? Either way he would have died. Either way he needed assistance as he could not pull the tubes himself. Where along this slippery slope do you move from calling it something ethical to something unethical? From calling it allowing someone to die to helping them die (aka assisted suicide)? How do we justify assisting someone to die by stopping treatment, pulling tubes, etc. and yet not justify "assisted suicide"? Either way we are helping them hurry up death. Either way we are not prolonging life. How is that somehow we have managed to cast one as a criminal act and not the other? The dilemma for the doctor (and family for that matter) is wanting to end suffering, knowing someone will die anyway sometime in the probably near further, seeing lack of quality of life, they may want to die, have advance directives about this... and yet helping with this in a way we have decided to cast as ethical, not murdering someone... On the other hand suicide is a selfish choice on some level. The incredible damage my brother's suicide, and to some extent my fathers (had his been the first suicide I am sure we would have had to go through the same process after my brother's death with him), did to those of us left behind is a terrible burden on the survivors. I absolutely resent that suicide is now seen as a viable (not necessarily good) choice, that I have to work to reject it as a choice rather than automatically recoil from it as a choice. This aftermath for the survivors also needs to be discussed with the person choosing to end their life, regardless of how. Somehow medicine chose to find a way out or this moral dilemma by deciding it is the means rather than the ends that will be used as the critical piece in deciding what is ethical, allowable, within the law... (Incidentally those who define ethics in the context of the outcomes would argue that all of these choices are unethical, presuming they also agree murder by others or by your own hand is unethical). As a result medical practitioners allow/assist with murder/suicide via advanced directives, patient or family choice and yet draw the line at the same thing by adding morphine or other drugs. How have veterinarians decided it is ethical to do assisted suicide with our animals. It is still ending a life. Is there something special about humans that exempt us from the same logic used with pets? As someone who has had multiple cancers, including one that will cut my life short, I think about this death and dying stuff on occasion (sometimes too many occasions). How do I want my life to end and will I even have a choice? Sure fear of pain and suffering in is the equation, but so it what kind of aftermath do I want to leave for the survivors, what is the legacy I want to leave for my child, and other family members, by how I die?... I do not yet have a personal answer to the question of what I will do when I am at the point that this current cancer will kill me. Will I be selfless or selfish? It is in making decisions like this that medical professionals need to be involved in laying out, in direct terms, what can or can not be done to address fears someone may have about the act of dying. And this needs to be done well in advance of death. I find as I think about these things I alternate between decisions, concerns, whose needs I consider, my and other people's desires... over time my focus regarding this has changed and probably will continue to change as I struggle with the question of how do I want to die, given a choice. Of course even though I am thinking about this in the context of a terminal cancer, I am also thinking about this in the abstract as I am not in the middle of going to die in the next several weeks where this would be far more concrete. When it is less abstract and more real, in my face, immediate, I may find I change my mind again... but at least I will have had the advantage of sorting through issues and starting to get a grip this "death thing" in advance. Thinking about this for the first time in the middle of a crisis (and I am positive nearly all people with cancer and those with terminal illnesses thing about these things whether or not they talk about them) is probably not going to lead to a well thought out, reasoned decision. Doing nothing to address these issues in advance is also a choice that has consequences. That is why I think it is in everyone's (patient, family, medical professionals) best interests to spend some time learning about death, choices, consequences of different kinds of choices... where there is time to change your mind, multiple times if need be, before making choices that you can not undo.
    • James Salwitz, MD
      I agree with your conclusion, that a main lesson of the painful experiences which your family has share in the end is one of choice and the inevitability of death. We can chose to ignore this reality and not plan or consider, and we are more likely to be swept away, as before a storm. We can try to plan and consider our choices and perhaps, just maybe, we will be able to have some element of quality and peace at the end of our lives. None of us can fully understand how we will respond, let alone what events will occur, but we can be certain that if we chose to deny life's realities, that we will have small chance of controlling events. Thank you again for sharing your story. jcs

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