Kent Bottles MD
Guest post by Kent Bottles, M.D., President of ICSI.
Preface: The Institute for Clinical Systems Improvement is a Minnesota-based non-profit that “brings together diverse groups to transform the health care system so that it delivers patient-centered and value-driven care.”
Needless to say, I like how they think. (Good taste, too – they invited me to do a 90 minute keynote at their conference, May 3-5, 2010 in St. Paul.)
Anyway, Thursday morning on Twitter, @KentBottles retweeted this:
@ICSIorg: The Ideal Doctor/Patient Relationship:
Can Doctors Ever Know What Will Benefit the Patient?
Son of a gun, he’s writing about a book Patient, Heal Thyself that was the subject of a post here in January. The book takes a controversial position, going to the core of who’s responsible for what in the patient-provider relationship. And that’s at the core of participatory medicine. So we’re cross-posting Kent’s thoughts here.
The subject gave him a headache. You? –ePD
The Ideal Doctor/Patient Relationship:
Can Doctors Ever Know What Will Benefit the Patient
What is the ideal relationship between doctor and patient in 2009 America? In 1927, in a famous essay titled “The Care of the Patient,” Francis Peabody described the personal bond between these two actors as the source of the “greatest satisfaction of the practice of medicine.” (JAMA, 1927, 88: 877). During my medical school days in the late 1970’s at Case Western Reserve in Cleveland, this personal bond was talked about a lot. The other topic emphasized was the need to evolve beyond the traditional the “doctor-is-always-right attitude” that Sherwin B. Nuland describes in a book review published in The New Republic (July 1, 2009).
In response to the paternalistic physician who pushes his values onto the patient, Jay Katz in the 1984 book The Silent World of Doctors and Patients argued that patients should decide between competing treatments because they alone can evaluate the personal issues involved in making such important choices. As one bioethicist put it in 1990, “We must render a patient’s responsibility to the physician unacceptable, and we must insist that patients take primary responsibility for making decisions related to their health care.” (Schneider, CE, The Practice of Autonomy: Patients, Doctors, and Medical Decisions, 1998).
Not all patients want to take on this primary responsibility. The problems associated with them making their own decisions are summarized by this patient:
“When he asked me what I wanted him to do I was very upset. He’s meant to be the expert, isn’t he? How should I be expected to know what’s the best if he doesn’t? I thought it was cruel. I asked him what he would do if it was his wife’s X-ray and test in front of him and he just said that what mattered was what I wanted. I don’t think it’s fair to say that to people like me who don’t know much about illness and operations. In the end, I just asked my daughter who used to be a nurse what I should do.” (Quoted in Schneider, CE, 1998).
Schneider in “The Practice of Autonomy” finds that some patients may want to reasonably give up their right to make their own medical decisions because they feel less competent than their physicians, because they are too exhausted, depressed, irritable, and confused by their illness to think straight, and because they want to be manipulated into a course of action they desire but still resist. He describes patients’ desires as “complex, ambiguous, and ambivalent.” A patient quoted in this important book says, “I needed the doctors to take control so I could use all my energy for recovering.”
The philosophers and the bioethicists write books and attend conferences where they tell medical students that patients should or must decide what medical care they want, that social justice demands that all of us should get the medical care we have a right to, that doctors should put the patient ahead of their own personal interests, and that the doctor should not harm the patient in caring for him or her. But the clinic still must be staffed and the patients must be seen. And in the real worlds of the hospital, nursing home and doctor’s office, patients do not always come in with a well-developed personal belief system that allows them to make all their own medical decisions.
Before his famous trip to McAllen, Texas, Atul Gawande addressed the tension between the advice of the bioethicists and the messy, busy, confusing world of taking care of real patients. Gawande rejects the paternalism of his urologist father where “doctors made the decisions; patients did what they were told.” “My father recounts that, through the seventies and much of the eighties, when men came to see him seeking vasectomies it was accepted that he would judge whether the surgery was not only medically appropriate, but also personally appropriate for them.” Patients “were regarded as children: too fragile and simpleminded to handle the truth, let alone make decisions. And they suffered for it.” (Atul Gawande, Annals of Medicine: Whose Body Is It, Anyway? The New Yorker, October 4, 1999)
Much of Gawande’s article describes the terminal cancer patient Lazaroff who insists on neurosurgery that none of his doctors really thought was appropriate or wise. “Lazaroff, I thought, chose badly. Not, however, because he died so violently and appallingly….I thought Lazaroff chose badly because his choice ran against his deepest interests.” Gawande concludes the article by writing, “As the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.” (The New Yorker, October 4, 1999).
And now we have Health 2.0 and participatory medicine, empowered patients and social networks, and some patients demanding to make all their decisions and see all their medical records. Robert M. Veatch in “Patient, Heal Thyself: How the ‘New Medicine’ Puts the Patient in Charge” (Oxford University Press, 2008) and Dr. Don Berwick in a recent Health Affairs article make the intellectual case for patients healing themselves.
Berwick has proposed a new definition of patient-centered care as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.” According to Berwick, such a definition should lead to elimination of restrictions on visiting patients in the hospital, patient choice of food and clothing in hospital, patient and family participation in rounds, patient and family input into design of processes and services, patients owning the medical record with clinicians needing to obtain patient permission to see it, and shared-decision making being used universally.
Veatch states that patients alone should be in charge of their medical care and they have no choice but to assume this active role. In Veatch’s ideal world there would be no informed consent and no prescriptions for drugs. Doctors should document the diagnosis and leave it to the patient to talk to the pharmacist about whether they should take the drug and what dose they should try. And Veatch believes that since “physicians generally have no basis for knowing what would benefit their patients” they “must stop trying to make decisions that benefit patients.”
Which brings us back to Sherwin B. Nuland, the retired surgeon and author, who reviewed Veatch’s book for The New Republic (July 1, 2009). Echoing the real patients quoted by Schneider and knowing the real world where Gawande performs surgery, Nuland concludes that “readers are left with a topsy-turvy world, but maybe that was his plan all along. Veatch stands revealed as an agent provocateur of medical ethics. His cleverness has gotten the better of his compassion. What he prescribes, for patients and doctors, is anarchy.”
Mark Hall in a review of Veatch’s book in the New England Journal of Medicine ends by stating “Veatch does us a real service by mapping such an unappealing world. His articulation of the strongest conceivable version of patient autonomy convinces at least this reviewer of how fundamentally wrong this position is.”
I will, for now, leave the last word with some patients. After reading the 1999 Gawande article, Susan Zimmerman, a physician and mother of a child with a chronic condition, wrote in a letter to the editor of the New Yorker (November 1, 1999): “Some people may feel that the techniques…that a good clinician uses to persuade a patient to choose the treatment the physician desires smacks of paternalism…Preserving kindness involves (the physician) shouldering some of the responsibility for patients should they desire it.” The famous e-Patient Dave who survived kidney cancer weighed in on January 9, 2009 when he read the New England Journal of Medicine review of Veatch’s book. In his e-patients.net blog he wrote, “As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors ‘incapable of determining what will benefit’ me. What, like I was going to think up high-dosage Interleukin-2 on my own?”
In the future I will try to figure out for myself what the ideal relationship between physician and patients should be in the 21st century. In one post e-Patient Dave says “Physicians are coaches, patients are players.”
I have heard Dr. Danny Sands speak about embracing “knowledge symmetry.” I guess I just do not yet understand what these slogans really mean for me and my family, my profession, my patients and my country. I have a headache. That is enough for now.
I like Dave’s analogy of coaches and players, but ultimately it is also like a teacher student relationship. One role of the physician is to provide the best information so the patient can make an informed decision. However, another role is as a guide along the journey towards wellness. Sometimes a patinet just wants to be told what to do.
Actually “players/coaches” is Stanley Feld’s. See my New Year’s Eve post, quoting him.
Kent,
your headache is also part of participatory medicine. You are now sharing the headaches with us. Many patients already know that the current system is great at generating non-stop headache. Why should they be the only ones? :-)
I thank both you and Dave for bringing this post to the e-patients blog. When I read it on your blog I was amazed by it, because you touch on one of the topics that is so important in the transformation of the health care system, and yet has totally disappeared from the national conversation about health care reform. To see a real improvement in the quality of care, we need more doctors like you and less politicians who see reform only in terms of dollars and cents and miss the fact that a significant change in the patient-doctor relationship could have a fundamental impact on the total cost of care.
A basic requirement for any relationship is that there is easy communications, which is harder to maintain nowadays given the gridlock at the front desk of most doctors’ offices, due to increasing patient traffic and need to cut overhead. Switching to email instead of the phone for non urgent messages would go along way to opening communication channels and improving the relationship. Need to use private and secure email, however, such as provided by http://www.housedoc.us, which is free and open to everyone.
I think that there is no question where the expertise and knowledge lies… the physician. However, the communication of the outcomes and circumstances surrounding a patient’s condition is a responsibility of which a physician needs to be aware. This delicate balance of knowledge and communication is a difficult task but can ultimately give a patient the platform from which to make an informed choice of actions to accept of deny. Thanks for the great post and taking the time to think through these issues.
Josh,
I think for some of us there are MANY questions about where the expertise & knowledge lies. In fact, as an advocate for patients suffering from rare conditions I am constantly saying that many expert patients know a lot more about a specific condition than almost any physician they may see. Their knowledge is extremely granular and limited to a tiny field but they definitely can answer most questions that other patients have, with greater clarity and expertise than a general practictioner or even a specialist in secondary care.
(sharing the comment I made on Kent’s own blog…)
As an empowered patient (to the max) I look for a relationship with my doctor that is truly respectful, where my doctor is not paternalistic or benevolent; rather he or she is a facilitator — willing to be my number one resource for input and opinions. One resource among others.
No doctor can think exactly the way I do about my needs or wishes. But a good doctor can certainly help me make the right decision – the decision that’s right for me. Not necessarily the decision that’s right for somebody else, including him or her.
Don Berwick has come the closest to a good definition of patient-centered. This isn’t about US vs THEM and it’s not about autonomy. It’s about respectful collaboration and satisfactory outcomes for both patients and their doctors.
> respectful collaboration and satisfactory outcomes
> for both patients and their doctors.
Perfect. Splendid. That’s “slide fodder” for future presentations, and probably for http://participatorymedicine.org.
In fact as I think of it, the Society’s journal should include columns where docs can share with peers their own experience of satisfaction. Because from everything I hear, one of the forms of dysfunction in US healthcare is that docs often can’t get no satisfaction, too.
Thank you Dave for reposting this blog piece and thank you commenters for your advice and opinions. This discussion is still in my mind a work in progress that we are all struggling with. Today’s New York Times has another piece of the puzzle. http://www.nytimes.com/2009/07/26/weekinreview/26leonhardt.html
David Leonhardt nicely summarizes how important the doctor/patient relationship is to controlling costs in American medicine. This is obviously important, and he brings up the whole issue of the end of fee for service and the coops from Oklahoma to Kaiser to Mayo to Cleveland Clinic with their salaried doctors. I am with Orzag when it comes to we have to lower the per-capita costs in American medicine or we will as a country not be competitive in an increasingly global marketplace. If American companies cannot provide jobs for all of us because of health care costs, the recession may last a long time with high rates of unemployment.
I think that doctors need to have the wisdom to customize their relationship/degree of input to each individual patient. Some (like Kerri Morrone-Sparling) will know more about their disease/needs than they do. In such cases one should listen respectfully and trust that the patient is very likely in a better position than they to know what to do next. http://sixuntilme.com/blog2/2009/07/the_idiot_doctor_is_in.html
However, for every 1 Trisha or Kerri there seem to be 100 other patients who are passive about their care and don’t engage even when begged to do so. What is the physician to do in those cases? I wish with all my heart that those passive patients could be converted into Trishas and Kerris – but I have not yet figured out how to make that happen.
My friend and former Surgeon General Rich Carmona told me that the average American understands health information on a fourth grade level. That is a frightening statistic, and I hope that we can change it with better education in schools. However, we must understand the reality that people are generally not well educated on health matters – and therefore are hard pressed to make good decisions even when invited to do so.
This may sound crazy, but even though I always took the time to explain options to my patients – along with objective pros and cons – not a single one made the choice without asking me what I’d do first. In fact, I usually was on the receiving end of some anger on their part – as if I weren’t doing my job by just telling them what I thought would be best.
Nonetheless, I was undeterred in continuing to explain things in detail in terms that the individuals could understand. Some were grateful, while others would tap their foot until I wrote their prescription.
But one day in the inpatient unit (after a lengthy explanation of all that was going on) my patient looked me straight in the eye and said, “Please promise me something.”
“Sure, what is it?”
“Promise me you’ll never become a doctor.”
What he meant was that in his mind “a doctor” was the equivalent of a paternalistic, hurried, know-it-all who didn’t take the time to explain things or learn about the patient’s situation.
I smiled an awkward smile.
“Never let the b-stards get you down.” He replied.
I never forgot that interaction because it made me realize how many of my peers must be clueless about patient care. Just as I’m frustrated with the vast number of patients who don’t engage in their health, patients are frustrated with the vast number of doctors who are poor communicators (to put it mildly).
I guess we need to do our best to be kind to one another – doctors should continue to educate wherever possible, listen and learn where appropriate, and tailor care to the individual. Patients should try to become more participatory, encourage good doctors to keep doing what they’re doing, and hold on for dear life to the few docs who’ve found the right balance.
I read the quote about “no informed consent” and laugh. I wont argue that the current informed consent process is perfect (anyone who has worked in pediatrics will tell you that there is something seriously wrong with the current process requiring parents to sign assent/consent forms for a sick child), but to think that it’s going away entirely overlooks the litigious nature of our society.
My few cents worth..the elephant in the room and the key term here is defining “relationship”, what relationship means to a physician vs what a relationship means to me as the patient. I can speak only from the patient side of the house, as a consumer of healthcare and as having worked in the industry for over 23 years which gives me a unique perspective.
I have a much smoother relationship with my primary care partner and will listen and take into advisement what he or she professionaly indicates, only if he/she views me as just that, a partner and not an object.
How does that start, usually within the first meeting, the old saying, you never get a second chance to make a first impression really fits here. If the physician walks into the exam room scanning my paper record or their electronic tablet without glancing at me first then the red flags go up..it’s common social behavior to need to be recognized and respected this first meeting requires some finesse so please look at my record before you enter the room, remember my name, and introduce yourself.
Egos, check them at the door, if this is a relationship, recognize that it’s tough enough to be sitting in a paper gown with your backside stuck to the exam table, or worried how your going to make up the missed 4 hours from work that you’ve taken to be seen for 15 minutes.
I am an observer too, I sense and see that my care provider is having a rough time of it, the body language and rushed exam. He/she is having to cover the bases of what has brought me to see them in the first place and be objective about how to treat me..is this just a headache, a migraine or do we need to rule out a brain tumor..that carries alot of responsibility and goes back to the basics of any relationship..again..communication..two way..not one way..you listen, I listen..I can sense if your really hearing me..I will respect your advice of I feel your hearing me..emphasis on feel..yes that terribly least clinical of symptoms..why then ask how I am feeling if your only worried about the clinical picture..if your not worried about how I am feeling please by all means keep looking at all the tests and the multitude of diagnostics, keep treating the body forgetting the mind runs the thing..there ya go the whole enchilada from my person perspective, not an M.D for sure..but I am a human being, have been one for over 50 years, had some wonderful doctors over my life, met some really feel in the blanks here..waiting rooms are full of sick people, I don’t enjoy being there, but I need to know that when I get face to face with my medical gatekeeper, that his attention is fully on me and not on the drug rep(s) who are hanging around trying to sell their ware..
In closing, let me share a recent encounter, I was at the local garden shop, met a wonderful older senior citizen, she was trying to load her bicycle basket with flowers, and was having a hard time of it, so I offered to place the bike in my truck and give her a lift home..she accepted and in that 3 mile drive I learned she had been diagnosed with breast cancer early during the year..she explained that she was on a fixed income and could not afford the copay for the surgery, someone in the physician’s office was so touched by her plight that they offerred to pay for the surgery..why I asked had she not had this surgery done yet then..she looked me straight in the eyes..got a stern look on her face and then a sad one..she said the Surgeon she was referred to acted to excited and happy and wanted to schedule the surgery right away..she looked at me..she said..imagine that..I have cancer..I may die from it..and he was acting happy..I dropped her off at her home..talked to her about going back to the surgeon..open up the lines of communications on how that first meeting made her feel..dont know if she did or not..I would hope she would..she just look so hurt..
Sorry my two cents turned more into a dollars worth..
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