End of Life Featured General MedicineDecember 21, 2015

I, Doctor

By James Salwitz, MD

There are times, as a healer, I feel helpless. These are not just the moments when cancer consumes. I understand that the dread disease has yet been conquered and there is still terrible loss.   This not when I refer a patient elsewhere; I know my limits. Rather, these are the times when I am trapped, ignored, and the result is needless suffering.

In his classic, often quoted, 1942 short story, Runaround, social commentator and science fiction giant Isaac Asimov, introduced the three “ s.” Asimov, and countless other new world thinkers, wrote thousands of pages about the conflicts and challenges these apparently basic ideas represent. It seems to me, sitting by the wheelchair of a man in agony, with a family refusing to relieve his suffering, a family in fact demanding more pain, that Asimov was talking about me, the doctor.

Asimov’s Laws are:

  1. A robot may not injure a human being, or through inaction, allow a human being to come to harm.
  2. A robot must obey the orders given it by human beings except where such orders would conflict with the First Law.
  3. A robot must protect its own existence as long as such protection does not conflict with the First or Second Laws.

Now, you are thinking doctors are not robots. We are an independent “profession.” Self-motivated. Self-educating. Scientists and Artists. Really? The Laws are a modern version of the Hippocratic oath. Buried in these commandments is the turmoil tormenting not only patients, but the medical profession itself.

The Robotic Doctor’s Laws might be:

  1. A physician may not harm a patient, or through inaction, allow a patient to suffer.
  2. A physician must obey the decisions of patients except where such decisions would conflict with the First Law.
  3. A physician must protect the medical profession as long as such protection does not conflict with the First or Second Laws.

Let us do a thought experiment. We will return to the bedside, where it all begins.

The patient is a 45-year-old man with advanced lung cancer. The disease has spread throughout his body, despite extensive treatment. Vertebrae are exploding. He is short of breath and coughs up clots of blood. Five foot, ten inches tall, he weighs 113 lbs, and, because he cannot eat or drink, is sustained by an IV of saline and trace vitamins. He is confused and in pain. Lots of pain.

The family has been designated by the patient to make decisions. Multiple consultants and I have told them that there is no treatment for the cancer and that this, too young, man will die. Nonetheless, they refuse palliative care or DNR (do not resuscitate) and insist that everything be done. More importantly, desperate for a few moments of lucidity, the family absolutely refuses adequate pain control because it may, likely will, cause confusion.

This is a common scenario, in every hospital, every day. Consider this tragic case though the lens of the Doctor Laws. The first Law is in shambles, as through inaction, a human being is harmed. If you have ever sat with a patient too weak to move, with bones crumbling, short of breath, drowning in a foam of blood, you have seen a small part of this hell-cursed suffering.

The second Law has undermined the first, as the orders of the family conflict with the first Law’s “do no harm” prescription. Finally, the third Law is dismantled, as the medical profession is stripped of relevance and the ability to give comfort.

Continuing our experiment, let us test solutions. I can walk away from the case; sign off and tell the family to get another doctor. The sanctity of the medical profession may be protected, but my desertion and inaction allows even more harm by depriving the family and patient of the physician who knows the situation best and has the greatest likelihood of bringing sanity to the situation. Moreover, the patient’s pain will continue.

I can order a morphine drip for this patient, despite the refusal of his family. That may bring comfort to the patient, but is by definition “assault.” This act will harm many more patients in the future as I destroy the integrity of my profession and perhaps lose my license.

I can take the family to court; try to get a judge to order palliative therapy. First, judges usually side with the family, no matter how bizarre their request, and secondly, there is a real-world problem. At any time, in any hospital or oncology practice, there are dozens of such cases. Hundreds of thousands of patients and families suffer through such futile misery every year. This is not a practical solution.

Therefore, I end where we began. The patient, family and doctor suffer. The Laws demonstrate the conflict, which allows and creates the pain.

Perhaps, the Physician Laws are in the wrong order. One could flip the first and second. That makes ultimate responsibility clear; the patient and family are always in control. The doctor’s role is to listen, educate and guide. However, if the first Law is always dominant, and doctors become wise, sentient, skilled robots, but robots regardless, who will protect the patient from harm?

Physicians must recognize the conflicts inherent in giving 21rst Century care, as emphasized in the confusion of the Laws. We cannot ignore suffering, we cannot cause suffering, we cannot stop suffering. The right of the individual to choose their own path is too powerful. Doctors are not in control. Perhaps this is our greatest challenge. Caught between society’s commitment to personal freedom and the realities of disease, there will be many times, when I am helpless.

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11 Comments

  • LInda
    As a caregiver for a loved one with cancer who died last year, I understand your frustration. Although your described experience is not one that we shared, families rarely ask for treatment so that their loved ones can continue to suffer. They refuse to let go of treatment because they don't understand why it's not going to work, and unfortunately, some families need more educational support than others. I do not presume to have the answer for your conundrum, but if what you are currently doing isn't working, why not try a different approach? From the patient and family's perspective, we would prefer to have the end-of-life conversation as soon as you know the patient's time is finite. Yes, there will be tears and protests from families, but you are not helping your patients by waiting until later to tell them. You are freeing them to realize any dream they still have time to realize before the inevitable end. You will also have time to discuss in a rational manner what the wishes of the patient are and explain to him or her in detail the kinds of things that can go wrong when family members are asked to make important decisions for them. There is a way to be totally honest without being cruel. Secifically, patients want to know that you have their back, and that they can depend on you and rely on you without fear of being abandoned, and that's it. Anything else is a bonus. We only ask that you do you the best that you can with what is available to you at the time because you are only human, and your best is good enough regardless of the outcome.
    Reply
  • Margaret Fleming
    I still read endless hospital claims about how nice it is that they will meet with and counsel patient and family. Thank you for giving me a chance to say again: The family does not always have the best idea. Please keep blogging.
    Reply
  • D Someya Reed
    I get your point but not all doctors are right all the time just as not all patients are wrong all the time. For doctors to become “robotic” or the practice of medicine to be conducted by robots there would have to be a far greater understanding of medicine than we either currently have or are likely to have anytime in the near future. No matter how many doctors claim that the cure for cancer is “right around the corner,” when push comes to shove none of these same doctors will admit to a complete understanding of cancer. They universally fall back on the idea that cancer takes so many forms, is so complex and often unpredictable to disallow a full understanding. So how can anyone program a machine to follow a set of instructions that cannot be determined or conveyed regardless of how fast it can "machine" think? Another problem is that physicians don’t live or work in a vacuum. There are many rules and many masters they must follow…far more than just three laws, as important as they might be. Additionally, however, there is a Fourth Law…the one that states that ALL laws have exceptions. Please don’t misunderstand…I have the greatest respect for "good" doctors and good “other” medical professionals. Unfortunately, “good” seems to be in the minority; overshadowed by average, mediocre and just plain bad. However, when you do find a “good” doctor, you know it right away. The distinction of good is far more evident than that between average, mediocre and bad. The thought experiment/test solutions expressed here are over the top. Seriously, a doctor would be likely to go through the time and expense to sue a patient to provide care and add yet another level of suffering? Commit assault? I realize that this sometimes happens in the case of children but even that is often unwarranted. So in that vein and based on my own experiences, here is what I believe the Robotic Doctor’s Laws might more realistically look like today: FIRST LAW* A physician may not harm a patient, or through inaction, allow a patient to suffer UNLESS… 1. A case can be made that such harm may be perceived as ethical under the Doctrine of Double Effect regardless of the physician’s actual mindset at the time of the actual administration of the alleged harm. 2. A patient (or legally authorized family member) can be convinced that such harm is for the furtherance of medical science (not "medical testing"...see a different law) and has some potential for the betterment of a future society (such as in, “Just think how much I will learn from your death”). 3. Such harm has been deemed acceptable for any reason by any governing board, administration, agency, association or source of reimbursement for physician services and as long as the THIRD LAW is upheld by the physician and he/she assumes all liability and holds legally harmless any such institutions as may be involved or implicated. SECOND LAW* A physician must obey the decisions of patients except where such decisions would conflict with the First Law UNLESS any association can be made that such harm, as indicated in the First Law, fits any of the following conditions: 1. Patients’ decisions compromise the physician’s perception of his/her own concept of “professional integrity” or the perception of professional integrity by any governing board, administration, agency, association or that of any institution providing reimbursement for physician services. 2. Patients’ decisions compromise the physician’s perception of his/her own religious beliefs whether actively practiced or not. 3. Patients’ decisions compromise the physician’s commitment to any definition of “quality care” either his/her own or that of any governing board, administration, agency, association or that of any institution providing reimbursement for physician services. 4. Patients’ decisions compromise the “standard of cost” associated with the “standard of care” or the cost standards of any governing board, administration, agency, association or that of any institution providing reimbursement for physician services. THIRD LAW* A physician must protect the medical profession and the following listed entities from even the appearance of culpability whether or not such protection conflicts with the First or Second Laws: 1. His/her own medical practice 2. Any board and administration governing his practice 3. All relevant state government agencies 4. All relevant federal government agencies 5. Any association relevant to his medical discipline, related medical field or the general practice of medicine 6. Any institution providing reimbursement for physician services * Cited conditions for each of the Laws are not deemed to be all-inclusive. All efforts have been made to portray accuracy but NO ONE can be held liable if any inaccuracies are found or determined either now or at a later date. Any applicability of any patient’s situation to the First, Second or Third Laws is determined on a case by case basis. Disputes with any of the Laws will only be resolved through mediation. Note: Any doctor claiming coverage under the Doctrine of Double Effect is automatically held harmless (similar to “diplomatic immunity”) as no physical evidence can be found to disprove any doctor’s claim as to their mental state (i.e., intent) at the time of occurrence. ...Yes, this is also over the top but I hope you get my point.
    Reply
  • amy galaudet
    Thank you for your thoughtful article Dr. Other folk because of their fanatic religious beliefs, would even keep a body alive with no brain function, for their own selfish needs. They have made dying an option like they can prevent death,because of their own fears We all die, too bad, other people who are not the patient have such control.
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  • Greg Yoder
    Dr. Salwitz thank you for your thoughtfulness. I'm hoping in the scenario you've offered you would not abandon the family or the case. Change is agonizing and slow and will happen one family at a time. Though this is a painful paradox, I can imagine you remaining patiently devoted to the potential this case may yet yield. I can imagine you candidly sharing your observations about your patients' suffering and be curious with his family that at some level it must also be painful for them to bear witness to that suffering while they desperately wish their loved one to remain remain alive and responsive. I'm reminded too, that when a patient, either by choice or default, defers to another for their healthcare choice-making, they have in a way agreed to be in compliance and endure the outcome based on that choice-making good or bad. They're in membership with that family system. While you are a compassionate and gifted physician making your contribution....you are not responsible for the outcome. You responsibly play only one role, not the most or least important role, just one. There are other complex variables at work. Our challenge as helpers will always be to make peace in advance with all outcomes. Because there is undue suffering involved doesn't mean there's not the potential for value and learning for everyone involved sooner or later. That's not up to us. Many years working in hospice has helped me reconcile these kinds of cases, especially working with bereaved families who have taught me so much as they reflect back on the choice-making they did on behalf of their loved one. Thank you for being honest about your sense of helplessness. What a great teacher it can be.
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    • D Someya Reed
      I ask this with utter sincerity because I don't understand what you are stating. You said, "Because there is undue suffering involved doesn’t mean there’s not the potential for value and learning for everyone involved sooner or later. That’s not up to us." What does this mean? Who is everyone? What's not up to you? At first read, I thought you were referring only to medical practitioners and hospice workers, such as yourself, learning from these experiences on how to avoid undue suffering for the "next" patient. This could make a certain amount of sense but only for these two groups. Others might see it as using the sufferer as a lab experiment. Even more so in the case of hospice. The hospice industry promotes themselves as "expert" in the relief of suffering and that there is always "something more" that can be done to relieve suffering assuming that you include palliative (terminal) sedation as a last line option for relieving intractable suffering. It logically follows then that no one should ever suffer in hospice. Yet, they do. But then you said "That's not up to us." What's not up to you? To not be responsible for 'everyone's' finding of value and/or learning from such an experience? I'm not at all sure here. Most importantly (to me), what "value and learning" does the actual sufferer (the dying patient and the most important part of "everyone") receive in these scenarios? Whatever it is (commonly referred to as "growth" in the hospice industry), It must be 'sooner' too as those in undue suffering don't tend to have an extended period of 'later.' I also don't understand when you said, "Many years working in hospice has helped me reconcile these kinds of cases..." What is it that YOU have to reconcile? Please...seriously...I would like to understand these ideas. You are not alone in making them. Many have said similar but I've yet to find someone willing to explain them. Would you please explain to me what it is you meant? Thank you.
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  • Kelly Minty Lenz
    Patients families have way too much control over the ultimate decisions that the patient suffering the disease should be making... I'm a strong believer in having advanced directives signed by patients as to their wishes and enforced by the courts to keep selfish , emotionally charged family from making and taking the final medical decision rights out of patients hands. As an ICU nurse I've witnessed this innumerable times.. Withholding pain medications, keeping clinically dead bodies alive.. It's painful for the patient and abusive in theory.. As a medical practitioner it makes me sick. Let's let you lay there in intractable pain and withhold pain medications from you so we can "interact".. It's disgraceful and should be criminalized.
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    • D Someya Reed
      Yes, it is disgraceful and it should be criminalized. But, in my experience, equally disgraceful and worthy of criminalization is the hospice which withholds or shortcuts care (in any setting) to save a few dollars or to force a patient (and/or family) to comply with the hospice's demands (stated as policies and procedures, whether applicable or not, in writing or not) as opposed to the wishes of the dying patient or his/her advanced directives. Even though, most hospices tell the patient and family prior to enrollment that "the patient" is "in charge," only after enrollment does one find out that this statement may not have been entirely true. Some hospices even threaten to discharge patients to enforce compliance expecting that they will likely get little opposition and knowing, too, that they (each, individual hospice) set their own rules as to what constitutes dis-chargeable offenses and "disruptive" behavior (see CMS COPs section 418.26, Discharge for Cause). There isn't even a requirement that each hospice's unique Discharge for Cause Policy needs to be in writing should you want to ask for a copy. Yet, very few hospices claim to have ever enacted a full-fledged, fully documented discharge for cause case. This is likely because the process of discharge for cause has so many explicit rules to follow, including outside, written supporting statements, and the subsequent "red flags" it would raise. Why do you suppose that so many hospices now have some version of the following statement in their patient Bill of Rights... 'The hospice or the patient's attending physician may be forced to refer the patient to another source of care if the patient's non-compliance with the plan of care compromises the hospice's commitment to quality care?' ...The leading hospice associations claim not to endorse this patient "right" but continue to fail to publicly denounce its inclusion. How can 'refer to another source of care' mean anything other than "discharge from hospice" yet not be an attempted run-around of CMS' explicit requirements for discharge for cause? Statistically, more than 25% of patients annually enrolled in hospice are reported as discharged but no one seems to care to report the reason(s) why. Neither do they report how many patients actually got better or were cured by hospice care; yet, hospice marketing largely uses this "curative" idea (or "hope") as part of their marketing efforts even though it is against their philosophy and policy of non-interference, non-curative actions in the course of a patient's disease. Any patient improvement, therefore, must be an accidental by-product of care. For a hospice to claim intention (to cure) would constitute fraud under the current system. And how many times do we hear that 'hospice care neither shortens nor prolongs life?' Suffering (or even death) caused by any hospice staffer including either over- or under-medicating a patient can easily be overcome by simply claiming "good intent" and coverage under the Doctrine of Double Effect. But none of these things are seen as "bad" by those in power to create or change the laws. The mindset and response to any allegations is most often that these lawmakers have "heard" that hospice is "more good than bad" and that anything else is "rare or anecdotal." Tell that to the now deceased patient whose own opinions of the quality of his/her care while in hospice was never officially sought nor documented. The family satisfaction survey from hospice is sent out about six months after the death of the patient. By the way, sending the survey to all families is not mandatory...hospices can leave out those families they assume will give a bad review. Nothing prevents a hospice from excluding negative reviews (received) from any published satisfaction survey results. Except perhaps ethics, of course. Why else would some published survey results be qualified with those reviews "accepted" implying that some were not (accepted)? Also, there are no mandatory reporting requirement of any family satisfaction results anywhere for anyone. But, again, who would know best the quality of care provided? The family that the hospice simply finds to be a medically uneducated irritant (whether true or not) or the actual dying patient? Unfortunately, the dying patient isn't in the quality of care review loop. Makes me sick? You have no idea. No nurse, no doctor, no hospital, no nursing home, not even a home health agency could get away with this so easily as can hospice. All of these organizations have specific laws and monetary punishments for abuses. Hospice has neither except for Medicare fraud. And the only punishment for Medicare fraud is suspension or revoking a hospice's license but this is rarely done. Even in the record case of $27,000,000 of fraudulent over-billing for a hospice on the East Coast. The well publicized hospice in San Diego went bankrupt when they couldn't pay back Medicare's finding of overcharges before any licensing action could be taken against them. What is the difference between hospice and everyone else? You really aren't expected to survive hospice (aka, you're dying anyway). What else could it be? One older study (almost a decade) found that hospice saves Medicare money. Would things change if that study were updated to find that now hospice does not save money over traditional care? Most of these abusive actions we will never know about unless the families involved come forward. Most never do. Often, they neither have the desire nor fortitude to do so. Many without previous hospice experience or understanding of appropriate hospice care don't even realize they've been abused. They are told that what they question is simply hospice policy, etc. and they accept that explanation. They are already dealing with far too much with the approaching death of their loved one. And hospice care takes place largely in private. Your word against theirs. Who do you suppose gets believed? Three things come to mind...you're grieving (includes denial), you have no medical experience (and even if you do, they likely will say you're still grieving or in denial ) and they have better documentation. Not necessarily accurate...known as "facility friendly" reporting...just more complete. When will it be time to enact laws to criminalize these actions and reign in hospices' abuses? These are far more frequent than we want to (or are led to) believe. It's not that hospices are overrun with villains. They likely have percentages of "bad apples" similar to that of hospitals, nursing homes, etc. Why is hospice the only group though with a "get out of jail free" card? Since their abuses are against those known and certified to be dying, their abuses are far worse than "abusive in theory." Kelly Minty Lenz, I agree with what you said and didn't intend for this to minimize your words in any way. I believe that both sets of practices (in hospital and in hospice) need to be stopped. There is too much silence and fear about saying anything bad about hospice (and the reason why this is so long yet there's so much more to be told). Why should an action by a hospital staffer incur as much as a $100,000 fine yet the same action by a hospice staffer carries no penalty or negative action at all? Is it really simply because two physicians have certified the hospice patient as dying anyway and Medicare can save a little cash? Makes me sick!
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      • Kelly Minty Lenz
        Well stated... I'm commenting purely from the perspective of an ICU RN that sees the suffering of all parties.. Mostly the patient. Medicare and the laws in place are partly to blame for the poor end of life planning. I don't see Hospice utilized enough in my area to know the ins and out of the abuses that you have mentioned .. They die in their suffering from prolongation of the inevitable.., the vents, the peg tubes and other invasive procedures that are in place and allowed to be billed to CMS ....for what? So I can suffer one more day, one week , one month??? That's the waste , that's the crime.
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        • D Someya Reed
          I definitely understand where you're coming from and shudder to think of what you have seen. The commonality we have is that patients often seems to be given the least consideration of all parties involved though, in all cases, they should receive the most. Sure, there is a lot of activity centered on the patient but not much at all about what the patient wants or soliciting any feedback from patients (when able) in order to determine how well care is being received or not. This is far more important and useful than the perception of care as relayed by family members (as a third party). Hospice is often accused (and rightfully so) of spending too much time on the family and not the patient. This can't be explained away because of hospice's claim that the "unit of care" is both the patient and family when so often hospices denounce family involvement in patient care due to the family member's lack of medical knowledge, unwanted requests/involvement, grief or even denial. Nor can it be explained by CMS' requirement that hospices must offer ongoing family bereavement support for 12-13 months after the death of the patient. But a case can be made that hospices consider family members to be a source of future referrals which is supported somewhat by the delay in sending out any satisfaction surveys for six months post death. Certainly, most every family member's memory of events (and patient care or lack of) would be much more vivid immediately following the death. I, personally, do not believe that hospices delay the mailing of the surveys due solely to respect for the families' immediate grief, as is claimed. I'm sure that much of what I describe here is not too dissimilar from what you and physicians encounter in your own area of patient care. Thank you for the conversation. Please accept my wishes for a happy and healthy new year.
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