WHILE IT'S TEMPTING TO CONCENTRATE ON INDIVIDUAL ACTS, IT IS MORE ELUCIDATING TO EXAMINE THE SYSTEM THAT BROUGHT ABOUT THE CONDITIONS UNDER WHICH THE PRINCIPALS WERE ACTING.
AN ICU DISASTER CAN BE SET UP BY A MALFUNCTIONING SYSTEM THAT SHORTCHANGES PRIMARY CARE.
“‘You’re Dying,’ I Told My Patient. I Wish I Hadn’t.”
That's the title of the New York Times article by Daniela Lamas, an ICU doc at the Brigham and Women's Hospital in Boston. (My old digs. I used to lug my laundry through the Brigham lobby to get to the dry cleaner on Huntington Ave. Never made it to the ICU, though.) One night in her ICU, Dr. Lamas found herself caught in a real dilemma. One of her patients was a strong-willed man dying from untreated colon cancer – untreated, she says, because, “Colleagues at the hospital had called him to schedule appointments, to get follow-up and to start chemotherapy, but he never responded.” Still in denial about his serious illness, he told the doctors that he simply wanted his pain treated so he could go home and watch the game. Dr. Lamas saw her dilemma as this: should she be kind to the patient and lie to him that he would be going home soon but he had to stay the night; or should she tell him the bald truth, that he was too sick to go home and in fact would probably die that very night. Kindness and a lie vs. cruelty and the truth.
Uncharacteristically for her, she chose the path of telling the bald truth, probably with controlled anger, it seems from the tone of the article. She admits that she was frustrated, and says that it was because of “the avoidable nature of this tragedy, at how denial had turned deadly.” The patient's rudeness and aggressiveness must have taken its toll, although she doesn't cop to that human reaction. The patient's response was to brusquely order the doctor and her coterie of students and trainees out of the room, and two relatives (the author takes care to specify that his sister who came was “long estranged”) stayed with him, and to turn on the game. Later that night, he died.
She devotes the bulk of the article to berating herself for acting badly, not kindly and softly, against precepts that she knows and accepts, and which she recounts for the benefit of the lay reader. This traditional medical dilemma is clearly what Dr. Lamas wants to article to be about. It's always a juicy subject that non-physicians can relate to. I've dealt with this myself, – see my blog Death And Other Bad News, where I recount some of my own dilemmas, and I present a case report where a doctor wasn't told his own fatal diagnosis by a long time doctor-friend taking care of him and how betrayed he felt, and where I suggest that medical students should be exposed to experienced doctors handling end of life situations in the very first month of medical school.
She berates herself for not being Ms. Sweetness in dealing with this obnoxious patient on this awful night of culmination of an awful disease, but at least she was genuine. Who wouldn't be angry and frustrated, given the situation which wasn't her fault, but had certainly become her problem? Who can shine when two strangers meeting at the worst time possible, and she had miles to go before she slept?
In her analysis of the situation, she intensely examines her behavior in responding to the challenge, self-dramatizing her challenge and her doubts in a very personal way, reflecting how we used to think of doctors, as heroes on a white horse riding to the rescue, wondering if she measured up, and bravely diagnosing that she didn't. Her intensity is both her strength and her weakness. Being so concerned about doing the right thing and knowing the details of what you are supposed to do speaks well of her. On the other hand, the more deeply she looks into the awfulness of the night, the narrower her focus becomes. She would do better to acknowledge her understandable feelings and reaction, and then to look more widely.
So to me, as a health professional used to looking at systems problems and quality of care, her discussion misses the mark. Medicine has done well in finding a way to investigate errors. We are used to going back from the error to assessing the series of events that led to it, ultimately hoping to find the root cause. How did this truly awful situation, where the last night of a patient's life is spent in an ICU where the doctor and the patient are meeting each other for the first time, and where the patient is resentful and distrustful, how did this awfulness come to pass?
The first clue is Dr. Lamas’s statement that “Colleagues at the hospital had called him to schedule appointments, to get follow-up and to start chemotherapy, but he never responded.” Really? Someone had made the diagnosis, someone knew he had to come in for treatment, and the only effort made was calling him repeatedly and then ignoring him when he didn't respond? That can't be the whole story; Dr. Lamas must have needed to keep the article short and focussed. In California, if you order tests on a patient and he or she doesn't show up for it, you as a practitioner are legally responsible to have made a truly vigorous and well-documented effort to have the patient complete the referral. A few phone calls would be impeachable in court, I think. It doesn't seem fair to be required to do this when you are in practice, but if you think about it, it really is. Who else can take care of the patient?
So, failure to force follow-up is one source of system failure. Why did that occur? Who were those primary care providers, or the specialist providers who assumed care of the case? Were they an impersonal hospital specialty clinic with students and fellows and residents rotating through, with staff detailed to make calls, nothing really from a practitioner, nothing personal, nothing from someone that the patient knows? A private practice that was disorganized, or who didn't have a close working relationship with the specialists and the hospital? Who was in charge? Whoever and whatever it was, they failed the patient, even if he were difficult, even very difficult. Was there no special outreach available at the Brigham, no social service, something? After all, there was a man dying out there, and they were responsible. There is always another step to take.
In this complex system, there always has to be someone assigned as the chief responsible party. Did that happen here? If there was not somebody riding herd on the progress of the situation, why? Was there a plan, or was it to make the calls and it's off my plate?
And then, one more step back. Before the patient came up with colon cancer, where did he get his care regularly? Did he have a regular primary care physician, or nurse practitioner, someone that he had grown used to and to trust over the years, someone to turn to, in private practice or in a clinic, with one doctor or nurse practitioner primarily, not trainees and staff rotating through? If he did, was there no coordination between the primary and the specialists, after the specialists were supposed to take charge?
All these factors are specific to the patient. But, in our search for root causes, we can go even one step wider and deeper. Perhaps the real heart of the matter is the failure of the American health care system to emphasize and to support primary care properly. Among the health care systems of much of the world, the US is an outlier. We emphasize specialist care and under-resource primary care, both with numbers and money. Many patients go without regular primary care, let alone a clinician who cares for them properly and who they in turn rely on and respect. In the hospital, even though it is known that best outcomes often come with the involvement of the primary care doctor – not taking the whole burden, but visiting, interpreting, giving the caring part rather than the curing part of medical care. Yet, these days, finding a primary care doc in the ICU is rare, and indeed, even in the non-ICU parts of the hospital, primary care docs have essentially been banished. Hospitalists take care of the hospitalized patients. And with hospitalists, although things can go well, it is essentially strangers involved in a new relationship, if it can even be called a relationship. And relationships between primary care and hospitalists are often problematic, and even if they are good, the presence of the ongoing caregiver is still missed. Payers don't want to pay for these visits, they are financial losers for the doctors, and hospitals and their clinicians really don't want the primaries around. No one thinks about the doctor patient relationship and the feelings of the patients. No one speaks for the patients.
(In fact, to go a little further afield, you have to wonder if the widespread COVID vaccine refusal phenomenon has a lack-of-primary-care route. There are a lot of potential culprits – misinformation, distrust, politicization. But, is it too farfetched to think that if more people had good primary care relationships, trusted people that they could turn to, and ways to ask him or her their advice easily, many fewer would refuse?)
There is also another deep root cause to think about. Since this is the Brigham, we are in the heart of corporate medicine land. Corporate and bureaucratic entities, most of them monopolistic or oligopolistic, are marked by confusion of jurisdiction, mal-coordination, and worst of all, lack of primary care fiduciary responsibility for the patient. It's easy to disappear in a bureaucracy. (For more on centralization-decentralization, see my acclaimed and innovative 2017 blogpost.) The more corporatization and bureaucratization there is, the further away the patient is from the caregiver, the more phone trees there are, the less personal connection, the further the organizational decision makers are placed from the receiver of care. So, saying that bodies (doctors and nurses and students and others) will be ready in the ICU to care for another body (the patient) may well seem adequate to a corporate planner, but when the actual patient encounter takes place, the lack of a personal trusted relationship makes itself finally felt.
My friend Phil Polakoff says: Words are important, acts are more important, but relationships are most important. You can train people to say words and perform acts, and they may or may not do it, but you can't graft relationships onto personnel the patient doesn't really know.
And eventually, the root cause approach takes us beyond the medical care system. Where has this poor man fit into society? Who takes care of him? Does he live alone? Is he one of those who can't fit easily into society, who is marginalized, who suffers the consequences of isolation? Where are the social supports? Even if he was a person of great personal difficulty, as Dr. Lamas seems to imply, someone who has brought much on himself, it is still tragic to see this as the final scene in his life.
To get back to the doctor's ICU dilemma, what do you do when the system disserves you, when something that isn't your fault becomes your problem? That was Dr. Lamas's lot in her scenario. But her presentation deals only with individuals – the patient's culpability, “people who are dying because of bad decisions about their health,” and her own personal missteps, the doctor as hero on a white horse. But today we think about systems, and she could do well to think, I have been placed in this place and this moment because of the decisions of many others, many of whom are too distant from this place where the rubber hits the road. Decision makers need feedback. A system that places strangers together at the very end of life is not humanistic enough. And then she would ask – how can I help the system improve? It wasn't her fault but it was her problem and she did as well as she could, but what could be done for the system to stop setting such a trap for both patient and doctor?
Despite Dr. Lamas’s mantle of regret and even guilt, it's pretty obvious that both doctor and patient were victims of our system, which undercuts caring, which relies on big organizations where the caring function can easily be lost, and which favors specialists over primary care givers. This awful result and the awful process of that awful night must be repeated everywhere and every day, which is a great shame. (I had thought of titling this essay “An ICU Doctor Misdiagnoses Her Own Problem,” but then I thought that was probably too harsh, she just concentrated her writing on a narrow problem that would sell, rather than a larger and more abstract one that would be less popular.)
So when her essay was published and I had the thoughts I have just outlined, I wrote a necessarily compact letter to the editor, which they published in the Sunday editorial section, along with several other letters which concentrated on the dilemma as stated by Dr. Lamas, while I, of course, concentrated on the system.
To the Editor:
Every doctor can sympathize with Dr. Daniela J. Lamas’s mea culpa for feeling she didn’t handle well the perpetual dilemma of terminal disease and professional frankness. Looking deeper, however, it seems that her dilemma was caused by failures elsewhere in the system.
The patient “never responded” to calls to schedule lifesaving treatments? That’s it? He didn’t respond to calls, so not our problem? Where was his primary care doctor, if he had one, and if he didn’t, why not? A trusting relationship with a primary care doctor can make all the difference in getting patients to treatments. Where was the teamwork among medical professionals?
Dr. Lamas’s anguish is understandable. Understanding the root cause of her dilemma might empower her and her colleagues to work to fix a faulty system.
Budd N. Shenkin
The writer is a retired pediatrician.