A Call for Parentalism in Medicine
VB is an 88-year-old woman. She had remained vigorous into her mid ‘80s, biking and playing pickle-ball with younger friends. She was admitted to the hospital with an MI. She had come to the emergency room with five days of chest pain. There were ST elevations across all the precordial leads and signs of heart failure on physical exam. Troponin level was 500 and declining.
VB went directly to the cardiac catheterization laboratory. She was found to have three vessel coronary artery disease, akinesis of the anterior wall, and a totally occluded LAD. The interventional cardiologists were unable to open the vessel.
Even three decades ago when I started medical school, paternalism was a dirty word. Patient autonomy and shared decision making were the new gospels -- with good reason. For too long, doctors had dictated care for their patients. They made decisions with good intentions but often without patients’ full understanding. Sometimes, doctors neglected patients’ specific, if idiosyncratic, wishes. Now, in the later years of my career, I am pretty sure the pendulum needs to swing back, not to mid 20th century paternalism, but to a 21st century parentalism.
Before I get into the arguments for why the turn from paternalism was easier than many would have thought, and what the unintended negative consequences have been, a few definitions. The Oxford English Dictionary (OED) defines paternalism as:
The policy or practice on the part of people in positions of authority of restricting the freedom and responsibilities of those subordinate to them in the subordinates' supposed best interest.
This definition applies well to its usage in medicine. The idea of “restricting the freedom and responsibilities” of my patients is abhorrent to me. Additionally, even calling paternalism paternalism today, when most of my colleagues are women, is laughable.
Maternalism doesn’t work either with the OED defining it as:
The quality of having or showing maternal instincts, tenderness, warmth, and affection.
Caring for patients with maternalism sounds kind of weird, if not a little creepy. So where should the pendulum return to? I am going to go with the term parentalism. This isn’t really a word -- a squiggly red underline appears every time I type it -- so I’ll define it myself.
Parentalism-in-Medicine. Noun. (Commonly shortened to parentalism.) The policy or practice of giving clear guidance regarding the best course of action. Guidance is based on knowledge, beneficence, and familiarity with patient values and expectations. Parentalism acknowledges that the patient must ultimately choose his or her course of action. Parentalist doctors also assure their patients that he or she will remain committed to the patient’s well-being, irrespective of the course of action chosen.1
I probably don’t need to enumerate the reasons that paternalism needed to be abandoned. Adults are entitled to make decisions about their own health. Substituted judgement might occasionally be necessary but it is never preferred. Every day, my patients disregard my advice. Some do it silently, not filling a prescription I have written. Others do it loudly, declining prescriptions, referrals, and procedures I offer. As long as I am confident that I have made my recommendation clear, and they have understood the recommendation and the reasoning behind it, I do not lose sleep about them doing something else. Some of these patients, no doubt, do better by rejecting my counsel.
I find it interesting to consider why medicine so readily abandoned paternalism. I am pretty sure it wasn’t just that it was the right thing to do. Practicing paternalist medicine is hard. You need to know the right thing to advise. You need to be confident in that recommendation. You need to be willing to take responsibility for your plan and live with the consequences. Shared decision making was worth embracing on its merit and its practice is no easier than paternalism, but it does offer a way out for doctors. In shared decision making, doctors can get away with not knowing enough to give strong guidance, to not be decisive enough to give real recommendations, and not be brave enough to take responsibility.
During her first five days in the hospital VB was transferred between ICU and the cardiology ward three times. She went on and off dobutamine until it became clear that she could not survive without inotropic support. Even on the medication, her liver function tests climbed and her kidney function declined. Discussions began about transferring her home with IV medications. There had been talk about hospice, but she could not go home with hospice and IV meds.
At this point, VB’s primary care physician met with her and her family. The doctor told them that nothing more could be done that would not just be prolonging the inevitable. Transferring VB home would be an unpleasant and overwhelming effort for all involved. The PCP said that having cared for VB for years, she felt like the best plan would be to stop medications, focus care on comfort and dignity, and allow VB to die peacefully in the hospital with family at the bedside. She asked if this sounded OK to VB and the family and invited them to propose other plans. VB and her family cried, hugged one another (and the doctor), and thanked her for the clarity of her guidance.2
The practice of medicine depends on shared decision making. However, for shared decision making to work well, doctors must be willing to practice parentalism. Employing their knowledge and experience, doctors must give clear guidance. They must share the basis of their recommendations and admit uncertainty where it exists. They must accept the responsibility for patient outcomes. They must also acknowledge that the patient must ultimately choose how to proceed.
In our quest to abandon paternalism, too often medicine has abandoned parentalism. We have done this for good reasons, but also, I believe, out of laziness and temerity. Patients need doctors to be collegial partners in their care; they also need doctors willing to play the role they’ve been trained for.
Parentalism-in-medicine must be differentiated from parentalism-in-parenting in which the child or adolescent does not “ultimately choose their course of action.”
I wrote about another similar interaction in Friday Reflection 7.
Is there not extensive support for paternalism, just in some spheres and not others, as seen in all aspects of covid? What is the difference? I would guess:
1) "Your rejection of my (or the government's) advice endangers others, so paternalism is okay here."
2) "It's easier for me to impose my judgement on you (or allow the government and the public to do so) as you are not a person I am interacting with one on one. You are an average person a policy is being applied to and I am less personally invested in respecting you.
3) Not knowing you personally, I also do not feel the weight of responsibility of having to actually know what I am talking about."
4) "Even if I care for you personally, I feel no risk of error impacting my personal reputation, as everyone else is doing it. "
As a physician for over four decades - what's left out in this discussion is that if you're going to be paternal, you have to be a father that's actually been there. I guess what I'm trying to say is the fragmentation of medicine is such that the relationship developed over decades with patients and their families is a rarity now or becoming such. Lots of reasons for this and that's another post. If you really do not know the patient personally it's a major handicap when you're dealing with serious illnesses with long-term consequences
I've been retired now nine years and my patients still reach out to me. I was extremely fortunate to have had the opportunity to see patients and have that kind of relationship. That was why it was so devastating when I had to retire to me personally.
Shared decision-making is great when you have a patient or family that is capable of sorting the complexity of the problem in hand.
The most common question ask of me over the years is "what would you do if it was your mother? "
I'm sure someone is saying well my mother is not their mother. I get it but I'm telling you this is exactly the conversation physicians have every day.
But your job as a physician is not to be an architect or interior designer for example giving the family options to choose from.
If as a physician, you can't figure out what's the best course of therapy necessarily how in the world can the patients sort this out? No amount of discussion on your part can educate them to the level required to give them the same abilities without them going through medical school. Just like you have not had their life experiences. They have not had your medical experiences. None of them have sat in the ICU at the bedside watching a postop bypass come out of the OR etc..
In the end, you can lay it out and if it's straightforward in your mind, the data will speak for itself. " we can keep doing what we're doing your mother will die. It's just a matter of now or a couple days from now."
That's a completely different discussion then the treatment of significant mitral regurgitation in a 75 year-old with renal insufficiency and diabetes. Add a fib, unknown, duration, moderately controlled.
Now, if you want to really be interesting, have them be seen by four capable cardiologists, one general, one electrophysiologist, one interventional, and one interventional instructional who can do mitral clip
If you really want to see variation, have it be two different cities and add university versus private practice
I'm not trying to be pessimistic Wealthy people are paying $20,000 per family member in my city plus a reduced price for kids to be in a concierge practice. The doctors that are seeing them are good, but no offense they're not recognized as the best in the world either. Rich people don't like to spend their money, just cause they have it.
These people understand that healthcare has become too complicated and they don't believe they're in a position to navigate it. They are paying to have the relationship that all of us used to have. In short, they're paying for someone who can be paternalistic to some extent because they both have the time and relationship where it actually is appropriate.