“After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum. A cardiologist and a nephrologist haven’t been able to help him, I reflect, so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… …Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try. Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?” I pause, then look this frail, dignified man in the eye. “What are your goals for your care?” I ask. “How can I help you?”
“Reading his chart, I have an ominous feeling that this visit won’t be simple. A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath. He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse”
“His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations. Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him… …A cardiologist and a nephrologist haven’t been able to help him, I reflect, so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… ...Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try”
”Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?” I pause, then look this frail, dignified man in the eye. “What are your goals for your care?” I ask. “How can I help you?” The patient’s desire. My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom. He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.” His daughter, looking tense, also faces her father and waits. “I would like to be able to walk without falling,” he says. “Falling is horrible.” This catches me off guard. That’s all?”
It’s time Doctors stopped trying to gaze into a crystal ball to imagine what Patients want and start using the tools of our time to let Patients and Carers share their concerns, wishes and intentions at a time, place and pace that they’re comfortable with.
”I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?Two days later, and two months after we first met, I fill out his death certificate”
I think this underlines the importance of letting Patients not only share their wishes with their Doctors but to also have it documented so that they can share this information with their family/carers. Perhaps a follow up questionnaire could be developed that could take away the guess work and ensure changing circumstances are also being considered eg. Why do the family want him to visit them all at home?, etc.
“JackN in comments: Production-line practice of medicine militates against the physician having time to ask and listen to what their patients want”
This really is where I see the problems. The limited resources being committed to Primary Care mean we have Doctors in the UK (working in an NHS that spends a budget of nearly £100Billion per year) seeing 60 Patients a day and this doesn’t just make it hard for Doctors to ask all the questions they’d like but it also makes it difficult for Patients eg. Patients knowing they have only limited consult room time might want to spend it remedying the need they’ve booked the appointment for (in this case presumably the swollen legs and shortness of breath) rather than use it all up considering quite complex concepts (like life goals and end of life choices) with the clock ticking.
“MaxxaM in comments: Great story. Though it’s important to point out that not every patient is the same. An experienced doctor is someone who quickly recognizes which method of questioning or treatment works best for which patient and employs such method appropriately. The “best” pill, if there is such a thing, does not work on even most patients. That particular question “what are your goals of care? and how can I help you?” may work on some patients at CERTAIN situations and CERTAIN times may need to be asked not just to CERTAIN patients but CERTAIN relatives of those same patients at CERTAIN moments of the care. My point is, doctors who read and like this articles should not start employing such a question indiscriminately. Same thing goes with readers who like this article; you should not expect a doctor to ask such a question to be competent”
I think this response is very interesting. Can you imagine how different this question might have been received if the Doctor didn’t have 30 years of Family Practice experience and was instead a fresh faced new graduate?
This is why I think we need to work really hard right now to immortalise the history taking skills of the world’s most experienced Doctors so that we don’t lose them to retirement and can add these life honed talents as tools to used to enable the younger and less experienced Doctors (who we urgently need to attract to work in Primary Care) to be more effective.
“Adam Higerd in comments(in reply to MaxxaM): No, the question itself is always valid. It is the responsibility of the physician to interpret the results. It would of course be foolishness for a physician to blindly accept the patient’s answer at all times. But UNDERSTANDING one’s patient is important, and making assumptions entails risk — asking the question carries no inherent risk; it’s a simple thing to do, and carries the potential of bringing up valuable insight”
I think this is technically correct but in practice the reality is for most it will be using up consultation time eg. there are risks if Doctor’s are using up this valuable limited time asking questions especially if they can be asked and documented prior to the consultation (Dr John Bachman, Professor of Primary Care at the Mayo Clinic, explains how this can be achieved in this excellent Mayo Clinic Proceedings Paper).
”PLMichaelsArtist-at-Large in comments: Very nice work, Dr. Kaminski – without having seen this patient before, you not only came up with a question that he could give a good answer to, you created a caring relationship with him, short as it was… …I understand that everything is hectic and costly, and that most practitioners are doing all that they can, but those moments of true connection – coming from a good question – can do so much to alleviate some of the mental anguish that goes with being ill. It is clear that you did this for both the patient and his family”
”MEinVA1 in comments: It’s a little disturbing that so many people posting about this article view Dr. Kaminski’s discovery of collaboration with his patients through the narrow lens of end-of-life decision-making. His epiphany holds great potential across the spectrum of difficult situations in health care, from birth to death”
Another very important observation. The value of sympathetically designed medical history questionnaires extend from prenatal Consults, right through end of life and even into bereavement (for carers and family members of the deceased).
”Nunyun in comments: Now this is what you call a “doctor.” Being a doctor should involve more than pushing pills, ordering tests, and hospital admittance. He did not take a paternalistic approach, but respected this gentleman’s autonomy, and for that he gained not only the patient’s respect, but the family’s … and mine, too. I’m going to “train” my doctor to ask me this … no, I take that back … I’m going to tell her “let me tell you what my goals are!””
This is how I think documentation is totally transforming how medicine is practiced and one of the most important objectives that we’re trying to attain with the consultation report we provide Patients with following their 3GDoctor consultations.
How did you take away from Dr Mitch Kaminski’s article and the comments from readers?
*** UPDATE 4 December 2017 ***
Preparing for the EndWell conference being held this week in San Francisco I came across the event founder (Dr Shoshana Ungerleider) talk from the recent Exponential Medicine Conference in San Diego:
Our founder, @ShoshUMD spoke @ExponentialMed on how we can transform the end of life into a human-centered experience and #EndWell17. Check it out! #design #EOL https://t.co/vD4pBtNSxn pic.twitter.com/5lwKcJyaBl
— End Well (@endwellSF) November 23, 2017
“What can we do? I believe there’s a radically simple solution. What if the entire healthcare system was geared towards asking Patients one question: ‘What are your goals and values of how you want to live your life?’. Then tailoring all care based on the answers to that question. 600,920 that’s the projected number of people who will die in 2017 of cancer. What if we were to ask each of them what are your goals and values”