How much therapeutic suffering would you endure to save your life? What if not to save your life, but to add five years? One year? Two months? The weekend of your daughter’s wedding? What does quality mean to you, and how do you balance benefit, risk, life and death? This is not a theoretical, make believe question, this is real life, because the best and most compassionate doctor might advise, your family support and cajole, and the experts publish their “findings,” but in the end it is up to you.

Friday, 10:00am: Lee is a 61-year-old-man with Chronic Myelogenous Leukemia (CML). His disease has responded to an oral “kinase inhibitor,” which has put him into remission. Remission in CML is not cure, but is control. CML is often a fatal disease. The medication has given Lee mild side effects, the worse of which is occasional nausea and some swelling of his ankles. Therefore, even after exacerbated education by me, Lee has drastically reduced his dose of medicine. The side effects are less, but his risk for early relapse is substantial.

Friday, 2:15pm: Bill is a 66-year-old-man with CML. His disease has responded for several years to an oral kinase inhibitor, which has put him into remission. The side effects are severe. Bill has nausea with a 21-pound weight loss, a scaly, almost disfiguring facial rash, headaches and significant fatigue. Bill is house bound, withdrawn from an athletic lifestyle, which included tennis, boating and hiking. However, even after extensive discussions with me, Bill vehemently apposes any change in his treatment.

This is the nature of all medical decisions; Compromise. How much benefit for how much risk. Or loss.  What are your goals and what are you prepared to sacrifice? What does suffering mean? How do you measure cost?

For now, I am not talking about money. Too often in our “modern” medical world, we confuse or combine cost in dollars, with cost in suffering or quality of life. Yes, that is an important conversation, just not here, right now.  I am talking about how much a patient is willing to sacrifice of life itself, in order to gain the possibility of more time alive. For this moment, let us leave our checkbooks in the drawer.

If we take a medicine for blood pressure, which might protect us from stroke, the benefit is obvious. However, what if it gives us an occasional cough? Dizziness? Nightmares? Stiff joints?

A bone marrow transplant for lymphoma can cure, but is a very tough mountain to climb. Makes sense for a healthy 29-year-old with a 2-year-old son. For such a patient there is almost no amount of suffering which is not “worth it,” even if the potential benefit is in the single digits.   But, what about a 75-year-old with heart disease? A 29-year-old with a progressive neurologic disorder?

Healthcare decisions are compromise. Go out for a jog, twist your ankle. Vegan diet, miss that steak. Have a colonoscopy, enjoy the prep.   Save your breast, undergo radiation. Treat an incurable, but just maybe, briefly, controllable cancer, lose your hair, deplete the strength in your legs, get fevers and maybe miss that last graduation or cancel that once-in-a-lifetime-the-thing-I-always-planned-to-do trip. “Do everything,” and die on a ventilator surrounded by strangers, instead of in the home you love.

Any doctor will tell you that decisions around compromise, balancing real life goals with real medical facts, is at the core of the physician – patient relationship. Skilled clinicians first listen in order to understand how a patient sees the world, in order to phrase education and advice within the context of that person’s “zeitgeist.”

Despite the best attempts to communicate, personal medical realities have limits. Sometimes the “truth” is inflexible. A fact is a fact. A broken bone is a broken bone. One the other side, there are many unknowns, especially for specific patients. “How long will I live” or “how well will the treatment work,” may have only a vague answer. Finally, “reality” changes. Cancers spread, coronary arteries close, sudden pneumonias invade. Doctors see the medical future through a haze, and even the most empathetic cannot read your soul.

Therefore, the final burden for each decision, for setting goals, for balancing personal benefit and cost, comes back to the patient. It requires forethought, discussion, and education. It demands introspection; what are your dreams, priorities and limits? Who are you? What do you want? It requires planning, now, today, when you are still hopefully healthy, well before the moment of critical decision.

If you, because of ignorance, trust or fear, abdicate that responsibility, step back and just “goes with the flow,” let the “experts” or your family decide, the result may not be healthy compromise. It may compromise life itself.



  • meyati
    2014, an English company asked me these questions. It took about an hour. I was asked if I would do a treatment if it left me nauseous for the rest of my life-I cracked up laughing because I have Surfer's Ear-and I've been that way since my teens. No it didn't stop me from surfing. So, we qualified how much nausea and barfing. I personally think that I was a poor choice to answer these questions. I told them that I think that most people will do anything to live, even a day longer.. I was offered a horrendous surgery and facial reconstruction as a trade off for 10 years. I chose the 5 year door that had really high rads for 30 days. I'm doing well, and got into Japan last month. But I found out that 5 years is sort of a pipe dream. My oncologists are getting very excited, and very nervous. I am sort of disappointed that they didn't give me the norm of this cancer, but gave me the rare extreme hope. You know how you council patients. Would patients chose differently, if they were told the truth about the norm? I need to go and pull more weeds-no little sit on cart, no knee pads because I can squat and get up. Statin toxicity took care of my Achilles tendons, so I was tethered to the couch before radiation.
  • D Someya Reed
    All of life, every moment of it, is compromise not just healthcare decisions. I can't believe that you paired the ultimate responsibility for healthcare decisions being that of the patient (a good thing) with the ugly and outdated idea that a 75 year old with heart disease has less to live for (or offer) in trade for medically induced suffering to gain a bit more time than a healthy 29 year old would with a child (assuming this 29 year old becomes ill). But then you add a 29-year-old with a progressive neurological disorder. What if this was the same aforementioned (previously) healthy 29 year old with child? Does that alter the question of the time gaining gamble of medical suffering? Then there's the matter of prognostics which aren't all that good and vary, sometimes widely, from practice to practice, facility to facility. Stephen Hawking was given very little time to live but not only did he live but he did pretty well for himself. Now for him there was the issue of resources (including m- - - y, which you asked that we set aside for this discussion). Should he have just gone home and curled up waiting to die instead of what he did? Worst of all, you stated “Do everything,” and die on a ventilator surrounded by strangers, instead of in the home you love. There are plenty of statistics of people having "done everything" and surviving, even being cured. Are these statistics all lies (or as a friend would rather I say, "material misrepresentations of fact")? There is no evidence of any kind to support that any patient capable to decide and choosing to endure medically induced suffering (for whatever reason) WILL die on a ventilator surrounded by strangers. This is fear mongering, pure and simple! Statistically, as well, not that many people die in their homes, even of the 75% of the population that the hospice industry claims already wants to die there per their "studies" of the issue. As I've said many times (and some people tend to disregard as "anecdotal" and of little consequence because of m- - - y and which I personally cannot disregard because of the love I have for my wife, our family and the fact that I was physically there), dying in the home is not all it's cracked up to be. My grandmother said she was going to take a nap and just never woke up. In my opinion, that's not a bad way to go if you have to go. My wife, alternatively, was "graced with the all the benefits and beneficence" of hospice in the home (yes, I'm being sarcastic if you couldn't tell). She, a quadriplegic but capable of feeling all pain in her remaining 82 lbs of flesh, with a spine cracked into three pieces, each leg internally severed at the femoral neck, pulmonary tumor load at 30+, Cushing's disease, agonizingly painful edema in her swollen left arm from a backed up chemo port the hospice refused to flush, was presented with an illegal and legally unconscionable "new and replacement" contract to sign (cue the laugh track, get it...quadriplegic...sign this...) How does any hospice or RN justify ignoring paralysis? How do they justify asking a quadriplegic to sign anything while holding the instrument for the relief of their pain mere inches above the patient's motionless body so that it is clearly within view? Added to this, the hospice revoked any and all comfort care measures for over 48 hours in order to "convince" her and I (no duress here) to sign this "new" contract. They presented this when they knew that her chosen attending physician was on vacation and told us so when our first reaction was to contact him. Repeatedly, and against the tenets of Medicare's Conditions of Participation for hospices, the hospice RN and management attempted to "persuade" my wife to revoke the hospice benefit. The IDT RN repeatedly attempted to convince us that my wife should take large doses of liquid morphine so that he could do his work "and she won't know what I am doing to her" along with attempts to get her to take lorazepam to which she was (and he knew) fatally allergic. In a discussion with the hospice's nursing director it became apparent to me that their concerns revolved around control...and only that they should have it. How else would you interpret the nursing director's comments of "I don't accept patient refusals," that we couldn't possibly understand the "expert medical care of the dying" they provide, their perceived lack of patient profitability (that per diem only goes so far yet we weren't asking for anything except to be left alone...i.e., not rolled) and an unfounded fear of future litigation and the "real" reason for their fixation on rolling her, I suspect, as they had injured her back (on a protruding tumor) during hospital to home transport. Why else go to such extreme and illegal lengths (aside from knowing that neither the State nor Federal government will intervene on a patient's behalf, the industry will back you up and possibly the AMA & ANA will support you too as happened to us once the severity of the hospice's actions were disclosed to them)? For her additional 48 hours of pain, fear and worry, my wife having verbally "agreed" at its end (spelled "under duress") to be rolled on her side (to get the pain relief from the edema) was unceremoniously moved so (like rolling a log) and held there as she screamed she couldn't breathe while the tumors in her lungs compressed together and reduced her already reduced breathing capacity to near zero. I'm sure I need not say the sarcastic "compassion in action" comment that I'm thinking but I just did. Ultimately, she went into respiratory arrest and I had her taken to the hospital. The hospice downplayed it as dyspnea and logged the incident as "caregiver breakdown." This was done in order to bill the insurance (fraudulently) for the "unauthorized" (by hospice) admission. They wanted me to agree with them which I refused to do but they wrote it up that way anyway. They could have refused to cover the admission but they had to know that the events leading up to this, the illegal contract, extortion and withholding of necessary care from a dying patient would have become public while she lay dying (not afterwards when they could deny everything). Just for the record, during her hospital stay she was given oxygen but never placed on a ventilator. I was with her at the moment of her death and all the family had been there all throughout the day and evening hours. She was hardly with strangers. The hospice tried to get the hospital to remand control of her body over to them and away from either me or the family. The hospital appropriately refused this illegal request, as well. So you left out something in your reasons a person might not make their own decisions (i.e., ignorance, trust or fear). You need to add loss of the capability for decision making either overtly with threats or subversively using many, many semi-innocent to despicable methods. It's easiest to do this in the home setting because there are no witnesses except hospice branded "pre-grieving family members in denial" who they claim lack any understanding of medical care for the dying which they also claim to hold absolute "expertise" in, above all others. As I was told, in no uncertain terms, who are they going to believe, you or us? Put yourself in our place for a moment and answer 'What would you do?' So to answer your question...How much therapeutic suffering would you endure to save your life? I would have to say very little, if any. It's not from a death wish but I'd have to have confidence in those who were providing that care. I no longer have that with most care providers. There's too little actual skill and too much incompetence, too much guesswork and far too much patient manipulation for my taste. I will never die in the hospital, on a ventilator, surrounded by strangers, either. I expect to die at home or on the street (coming or going from home) and I suspect I will be alone. Our friends tell me they won't allow me to die that way. I appreciate the sentiment but doubt the's not like they follow me around. If I were given the choice of dying under the "care" of the hospice we had (there's one other for our area but claims are that they are even worse...though I doubt that) and dying alone and face-down in the gutter, I would choose the gutter. I say this with absolute sincerity. Fear of (our own) death is the primary reason we make bad decisions or no decisions regarding it. Lack of that fear does just the opposite (barring causation by mental illness). Each of our deaths will come. There's no denying that. More often than not, it's simply a roll of the dice, luck of the draw as to how it plays out. You can have all the pre-discussions and best laid plans you want (as you should) but they're only good if they are followed. Too many times, even when known, your directives are not followed and you're in no position to do anything about it. What can we do to change that?
  • very well written and so true. Every individual is just that, an individual. I myself think if the things I love in life and the quality I know and love were taken away I would not be that individual anymore and therefore already would have died. Thanks... John
  • jillma
    Very good points. Time and time again, though, for as long as I can remember, I never got all the was withheld, etc. One cannot make good decisions or choices without the facts. When I hear that a Dr. said he told of the risks..everything that could goes wrong, patient would never in a million years agree to treatment if he/she really though this would happen.
  • It is refreshing to see you, a clinician, treating this topic. I have metastatic breast cancer and after a few years of treatment made the decision to go with palliative care (mostly pain management) only. That is because my impaired quality of life was not worth the possible benefit. It's a trade off, but not one we can decide mathematically. For myself, I will revisit my decision under certain circumstances; for example, if it spreads to my brain. The life I've had since stopping active treatment is worth the risk so far.

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