Hospice After Kevorkian: Still Lessons to be Learned

Dr Jacob “Jack” Kevorkian died on June 3, 2011 of   complications arising out of chronic kidney disease, hepatitis C and a blood clot, at William Beaumont Hospital in Royal Oak, Michigan.  I hope that at the end his life he was not in pain, not short of breath, not frightened and at peace.  For me, symbolically, his death marked the end of an approach to disease marked by surrender and abandonment. It always seemed to me that his message was that if one is very sick, one’s life is worthless.  Instead of exploring possibilities in the treatment of suffering Dr Kevorkian said that when things are very difficult, it was time to give up.   The message of euthanasia is that we do not have to try to help each other live; we can simply throw life away.   He proposed adding to the list of healing which includes medicine, prayer, wisdom, soft beds and love, death itself.   I would have hoped we had moved on from that bleak vision, and learned what is possible at the end of life.  Thus, the words of a patient surprised and saddened me.

My patient has an advancing cancer, for which he has been treated for several years. The disease is increasing and cannot be treated or cured. He understands this, and knows he is going to die from this cancer. My patient is still active, but becoming gradually more limited.  He has only modest pain, which is fairly well controlled.  However, I am concerned that soon he will become much more limited.  I am worried about increasing pain, shortness of breath or maybe bleeding.  His wife is a good caregiver, but is physically limited.  He could really use assistance, so that he can stay at home.  He could use more help so that when more difficult problems happen, there will be someone available to quickly adjust medication and if needed call me for more instructions.  He has need for emotional support for his wife and him. It seemed obvious, what to do.  I suggested that we contact home hospice.   He looked at me in shock.  He said, “I don’t need hospice, I am not ready to die.”

After a moment, I asked what he meant.  He told me that he was still active and felt well and that he was not ready to climb into bed, plug into the morphine drip, and expire.  He “knew” about hospice and how it was called in to help dying.   With possibly several months of life left, he was not ready to “give up.”    I realized that, despite my best intentions, as far as my patient was concerned I had suggested that he call in Dr. Kevorkian and the “death panel.”

It disturbs me to know that we have failed to educate ourselves better about hospice and that this sort of idea is still common.  To say hospice is about death is to say that the sole purpose of living is death.  Hospice is only about life.  Hospice is about living the end of our lives well.  Hospice is about finding opportunities at the end of life to share, teach, learn and give.  Hospice is about stopping pain, shortness of breath, fear, anxiety, loneliness, and suffering, from stealing life away.  It is about living fully, until death.   It is not about trying to be dead.

The defining fact of life is that we all die.  However, a person at the end of their life is indeed alive.  Hospice tries to allow that time of life to have meaning.  It tries to bring peace, comfort and togetherness. It never gives up.  It never surrenders.  It always tries finding the beauty in life, even at its end.


  • D Someya Reed
    This may be too late to be posted (I just found your site today, 4-15-13) but this is mostly for you Dr. Salwitz. I say this with all due respect and respect for you blogging and putting yourself "out there" to the public. However, as a physician, you have a different view from the public/patient side of things. I believe, even when you might be a patient yourself. Knowing you are a doctor, you will be treated differently. Just like in any industry, there are bad hospices...correction...bad people, bad managers in hospices. They are the ones that taint public perception of hospice and divert hospice from what, I believe, it truly intended to be. But on the other hand, there are those members of the public that propagate their own false impressions and misconceptions of hospice. Take, for instance, a recent magazine article my neighbor showed me of "a loving daughter" whose mother wished to die but didn't know how. Her daughter told her, according to the story, that there are ways to do this...let's call hospice. Now I don't believe that hospices routinely condone this but they, again according to the article, found one who would participate in the active starvation of a "competent" though certainly misguided adult. Could the story have been a phony...perhaps. But the magazine printed it. These days there are also those in society who feel that the old, infirm, sick, etc. have a duty to die to free up resources for the young(er) and healthy. I wonder what these people will think when they get older, sick, etc. They separate themselves from the "Right to Die" movement as the "Duty to Die" movement. I hope it never catches on. But your last paragraph is what made me want to post. You seem to have an idealized view of hospice and that may be good in the brochures but it is not always what is happening to the rest of us. I, if you haven't guessed, have my own story of hospice. When I took my cause to HHS in Washington D.C., I was told that my story was "the most horrific story of abuse by a hospice against a patient in the history of hospice in this country." It has been echoed the same all the way down & back to locally. Comments like that kind of stick with you. I'm just concerned, as in any industry, if you paint too rosy of a picture of something...no warts, no scabs...you raise the public's false expectations, their problems with that industry they feel then must be due to themselves and they feel they failed their loved ones. They won't talk about it because of the guilt they feel. Hospices themselves know the problems that arise when workers start to believe the comments of what "angels" they are. This, they know, leads to "hospice arrogance." One of the worst things that happens is the hospice (workers) no longer take responsibility for their actions (being angels, of course) and instead of waiting to hear what is claimed to be so common a comment from families..."If only I'd known about hospice sooner..." they say to the surviving family members, "If only you'd come to us sooner, there is so much more we could have done." This squarely places the blame and guilt on the family and likely ensures their silence. As true as your comments may be for some hospices, mine are true for others. It's not as rare as they like to say...it's true, it happens. And it's wrong.
    • James Salwitz, MD
      I suspect you are correct, I drank the koolaid a long time ago. Every successful part of healthcare (and life) requires someome to be a gadfly and knock sense into those creating or providing the service. It seems that person is you. I love your comment and the balance it provides ... you are kind of saying, "hey, its a good idea, now let's get it right!" Keep shouting!!! I know I will listen. jcs
  • D Someya Reed
    Thank you, Dr. Salwitz, for bringing this post to the forefront again. However, I’ve reread it and continue to, respectfully, disagree with it from both sides you mention. Just as your patient misunderstood hospice as a death sentence, you misrepresent hospice when you say it is “only about life.” Let me explain. Hospice is not direct euthanasia, but it has happened. Hospice is not assisted suicide either by drugs or withholding food & water, but it has happened. Hospice is not a final trip to Disneyland or a non-stop “party till you go,” but it has happened. This is what hospice is: 1. Hospice is recognizing that your death is unavoidable and may occur in six months or less from one or more of a number of medical conditions accepted as terminal. 2. Hospice is recognizing that your curative care options are either futile or unwanted or both. 3. Hospice is your right of autonomy (control) over your own body to have your death arrive in the most dignified and pain-free manner possible by comfort care (palliative care) alone. Therefore, hospice has two focuses: 1. To support the dying person in achieving the most dignified death possible. 2. To help the dying person achieve a level of comfort acceptable to that person in support of that dignified death. Hospice, if done well, may have additional benefits (assuming the patient has some level of strength, mobility and/or communicability…i.e., can speak): 1. Patients may be able to think more clearly (less pain fog) in order to concentrate on and conclude certain desires (complete projects, a final trip, etc.) 2. Patients may be able to reconcile past hurts or have meaningful goodbyes (but only if they want to…not all people want to make up with “crazy Uncle Larry”). What hospice “Is” and its focuses (above) are neither palatable nor highly-marketable to our death denying society. On the other hand, “additional benefits” of hospice (if done well) are both palatable and highly-marketable. To say “hospice is only about life” (therefore, the “additional benefits only”) is the height of denial of not only hospice but also the discussion about death. How can we exclude death from “what hospice is” when someone must be dying for hospice to be used? It insults those actually in the process of dying as it excludes them. They are the ones running out of life the fastest. You only need to ask any patient…just as did Cicely Saunders, Florence Wald and Elisabeth Kübler-Ross, the ones attributed with the founding of the modern hospice movement. The statement “hospice is only about life” is purely, unequivocally “marketing” and nothing more. It panders to those who will outlive the patient and, ultimately, be the ones to bring in more business. It makes them “feel better” about their loss. Hospice, whether we like it or not, is no longer as it once was; purely non-profit, existing only on donations and the time of volunteers (nurses, doctors or caring public). That pure altruism has been replaced. When Medicare found in the early 1980’s that hospice could save money, things changed. Hospices became, as they are now, businesses, regardless of tax status. Very, very few do not bill Medicare, State Medicaid or insurance companies. They all have competition they didn’t have before. They must follow strict rules for billing but loose, rarely enforced rules for patient protection. Just as with any service from any company, we should all ask questions of any hospice we are considering. Of course, this would require us to be proactive regarding death and dying which, unfortunately, we are not very good at. I’m sure you’ve heard this before that we research more about which car or TV to buy than (I’ll let you fill in the blank). It is much worse for hospice. Hospices are perceived to be good simply because they contain the word hospice in their name. If hospice is to truly be what it claims, then each and every hospice agency must be willing to answer the questions they won’t put on brochures, provide the public with tools to discern quality between hospices and not play word games (with the dying) such as “hospice is not a place but a philosophy of care” when in actuality it CAN be a place IF the hospice has its own freestanding hospice inpatient facility. They must standardize their practices as much as possible to assure quality of care across the entire hospice industry. They must avoid taking advantage of loopholes or laxness in Medicare’s billing regulations that allow each hospice to define its own set of rules when those rules are likely to be detrimental to the patient. For instance, Medicare allows a patient to be “discharged for cause” but allows each hospice to individually create a policy on what “cause” is a discharge-able offense. And worse, these policies don’t even have to be in writing. Keep in mind that hospice, as a business, is neither good nor bad. It can only be profitable or unprofitable. People are the only thing (management and/or staff) that make any business good or bad. So, how is the public supposed to choose one hospice from another? Reputation? Are the same people who built that reputation still working at, in charge of or the owners of that hospice? Trust? These are total strangers to you. Policies? Many won’t let you see them (internal use only) or don’t have them in writing. How easy then would it be to simply say “you violated our policy.” Other policies are not disclosed until needed. And, as is increasingly occurring whether in writing or not, is the inclusion in the Hospice Patient Bill of Rights of the following (or similar) verbiage: “Should you refuse to comply with the plan of care and your refusal threatens to compromise the hospice’s commitment to quality care, then the hospice or your attending physician may be forced to discharge you from the hospice and refer you to another source of care.” What if the hospice refused to allow you to be involved in developing the plan of care, refused to give you a copy of the plan of care or even see the plan of care? Under what circumstances would your own physician be likely to agree with your discharge when he/she retained you as a patient long enough for you to choose them as your attending physician? Hospice is, first and foremost, compassionate care of the dying. There is no place in any hospice for deceit, greed (including billing fraud), or abuse of patients in any form from the inappropriate solicitation of donations to the withholding of needed care to coerce a patient’s compliance or to save a few bucks. Hospice is about you and a dignified death while retaining as much quality of life as possible from the time you enroll to the time you die. Anything less is not hospice.
    • James Salwitz, MD
      As always I appreciate you critism of the growing hospice movement. Only by having such gad-flies can we optimize care and guarentee quality. I would respectfully disagree with your thought that my take on hospice as "only about life" is misleading. I would suggest that the key items you underline as being central to hospice (recognizing the reality of death, focusing on maintaining autonomy and giving the best support possible at the end of life) are about life, not about death. Too many patients (and docs) refuse hospice, when it might help them live better, because they confuse hospice with accelerating or causing death. In my experience, hospice policies are open to external review, but I would not be surprised if some hospices may try and make critical decisions in private. That is a situation we need to remedy. Thanks very much for your extensive comment, jcs
  • D Someya Reed
    We agree, then, to disagree. Fair enough. We seem far apart but actually I don't believe that we really are. I simply don't believe that we can (or should) induce acceptance or promote use of hospice simply by removing the word "death" whenever we talk about it. I do believe that every hospice must allow every patient to control the course of their own "natural" death and never usurp this right from even a single one. They all claim this to be true while in reality they are not even close to being there today. What is the value of a single human life when deprived of this most basic right? That life becomes no more significant than the bug we crush underfoot without hardly a thought. This is the suffering I saw before me and was forbidden to interfere with or the suffering would be made worse. How many lives are acceptable to end this way and who gets to make the decision? As a footnote: For doctors, hospice policies are probably readily available. Call a few hundred of them, don't tell them you're a doctor and ask for something as simple as their Patient Bill of Rights (many times already available on their website). See how many times their first response is "Who are you and why do you want to know?"

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