Some reflections by Holly Witteman on how to help patients and their families deal with medical trade-offs and options. Quote:
What makes health tradeoffs especially tough is that they incorporate uncertainty. It’s one thing to choose between the butter and the butter money. It’s quite another to choose between a 15% chance of butter and a 12% chance of butter money. And yet, many medical decisions are set up precisely this way, because we never know for sure whether a treatment or therapy will work, or which people taking a drug will experience the uncommon, unpleasant side effects.
She suggests three approaches to help improve our dealing with trade-offs:
- Start how people approach trade-offs, not how we wish them to;
- More research on how to help people facing difficult health decisions; and,
- The trade-offs medical practitioners face in health communications.
Let’s help patients with the tradeoffs in medicine.
A reminder of the risks of desensitization through humour, and that as patients we need to understand how doctors and medical teams may react to us. Groopman’s How Doctors Think has some good examples of patients who defused this risk through preventive remarks (‘I know I may sound a bit crazy….’). Quote:
Humor is an important coping mechanism. We all eventually need to find ways to laugh about even the darkest tragedies.
The dark side of dark humor is that it desensitizes us. In hospitals and medical clinics, such desensitization can cause us physicians to lose empathy for our patients. It can cause us to underestimate their suffering. Perhaps even more importantly, when we physicians lose the ability to appreciate our patients’ perspectives, we also become less able to help them make difficult medical choices.
Think about that the next time you ask your doctor for medical advice or come to her for emotional support. Your physician has emotions too, sometimes very strong ones. But just as often, she has found ways to reduce the strength of her feelings, so she can get through her work day with sanity intact.
That means that your job as a patient is to help your doctor understand where you’re coming from. If you hope to get good guidance from your physician, you need to help her see the world through your eyes. She won’t be able to do that if you remain silent, on the other end of that stethoscope.
Help your doctor understand where you’re coming from.
More on doctors from Sunrise Rounds treating family and friends and the risks involved (see earlier post Why doctors shouldn’t treat their family and friends). Again, one of the main risks relates to the affective fallacy, and how that may cloud a doctor’s judgement.
However, people being people, it is somewhat natural for related doctors and patients to consult each other (we have a number of doctor friends that we consult for informal second opinions), but this should be in a supportive role, not as being responsible for medical treatment and care. Examples include helping know which questions to ask, giving a sense of whether side effects are normal, but all within being acutely aware of the limits and the need to defer to the treating physician.
Doctors should not be allowed to take control of the care of loved ones and in reverse should not demand real control, beyond that guaranteed to each patient and family. Treating physicians must be aware of potential guilt that can lead to controlling behavior and remember that improper control can amplify future guilt.
When a doctor or his family is ill they are patient or loved one. This is a special role that no one else can fill and is vital. By helping physician-patients focus on healing and not being responsible for care, we make the chance that they will return to healthy lives that much greater. For our friends and colleagues there can be no finer honor.
The Doctor as Patient – Sunrise Rounds | Sunrise Rounds.
Although the author could have developed further this piece on how to equip medical students and doctors to cope with the emotional pressures of working with patients and their families, it does capture the challenge of providing dispassionate advice with empathy. Quote:
“Turmoil.” The advice that is generally given, by those in medical school, courses on doctoring, senior colleagues, your peers, is to be sympathetic and removed. Complete dissociation from the red-eyed, pale individual pouring her story into your lap, however, is impossible. The encounters change you, sculpt your responses, awaken you from sleep. A night spent telling a roomful of family members that their sister will not survive til morning, explaining to a woman that her husband, healthy and playing football with his sons just 6 months ago, is now bedridden, are not carried out by an emotionless machine. It is the faces, the pressure of cold hands holding mine, and the hoarse “thank you”s that I remember most. The stern eyes of family who can’t help but blame you for the dissolution of their loved one’s flesh. The raspy breathing of a man lying with eyes closed between 4 steel enclosures in a white hospital bed – it is their faces and the stories of their failing bodies that stay with me. The courage of individuals to say “this is enough, please call my family, I need to say goodbye.”
Humility and humanity is required of us to best respect our patients.
Not a bad list. Should one be a regular patient, some of these are not needed. The last two are coping strategies for the inevitable waiting (patient as being patient).
- A medical card or history
- Changes to your medical record.
- Your medications.
- A list of alternative therapies.
- A journal of your symptoms.
- A list of your questions.
- A notebook and pen.
- A family member or a friend.
- A smartphone.
- Some snacks.
Preparing for your doctor’s visit: 10 things to always bring.
Some good commentary on the American College of Physicians on the risks of patients being treated by family and friends, while noting a few benefits. The actual ethical guideline is:
Physicians should usually not enter into the dual relationship of physician–family member or physician-friend for a variety of reasons. The patient may be at risk of receiving inferior care from the physician. Problems may include effects on clinical objectivity, inadequate history-taking or physical examination, overtesting, inappropriate prescribing, incomplete counseling on sensitive issues, or failure to keep appropriate medical records. The needs of the patient may not fall within the physician’s area of expertise . The physician’s emotional proximity may result in difficulties for the patient and/or the physician. On the other hand, the patient may experience substantial benefit from having a physician-friend or physician–family member provide medical care, as may the physician. Access to the physician, the physician’s attention to detail, and physician diligence to excellence in care might be superior.
Very much on the one hand, on the other. Groopman in How Doctors Think also discusses this issue, calling this the affective fallacy as doctors may overlook certain signs or issues to spare someone close to them additional pain or aggravation (I forget what he calls the contrary, where doctors may miss things with patients who are ‘difficult’). He of course provides some good questions or discussion points to help both doctors and patients in both situations.
For cancer and other patients with ongoing chronic conditions, we do develop stronger longer-term relationships with our doctors, and need to be aware of the above issues.
Why doctors shouldn’t treat their family and friends.
A good piece on doctoring and technology, and how the newer generation has to learn how to use technology without forgetting the patient. My experience with both the younger and older doctors is that they are good at this, and I never have felt secondary to my patient history screen. Quote:
“I tell them that their first reflex should be to look at the patient, not the computer,” Dr. Heineken said. And he tells the team to return to each patient’s bedside at day’s end. “I say, ‘Don’t go to a computer; go back to the room, sit down and listen to them. And don’t look like you’re in a hurry.’”
One reason for this, Dr. Heineken said, is to adjust treatment recommendations based on the patient’s own priorities. “Any difficult clinical decision is made easier after discussing it with the patient,” he said.
Redefining Medicine With Apps and iPads – The Digital Doctor – NYTimes.com.
A reminder that it is not all about technology and that patients are already engaged – otherwise they would not be seeing a doctor. How doctors respond to patients makes a difference. Quote:
Whether patients remain engaged by the time they leave the doctor’s office, and to what extent, are the questions we should be asking. For example, how “engaged” would readers here find it if they went to their doctor only to have the doctor:
1) not ask why they are there (fears and concerns), or worse, ignore the fears and concerns which they describe to the doctor,
2) disagree with the doctor as to the visit priority and how to diagnose and treat it, including for example being prescribed medication when you don’t want to take pills, or
3) found out that you knew more about your problem and how to deal with it than your doctor?
The point is that providers need to be engaging to patients in their demeanor, attitudes, and how they talk with and listen to patients. Doctors need to know who the patient is, what their fears, concerns and expectations are and what the patient is able and will to do. Meaningful patient engagement, the kind that leads to long term health behavior change, begins with patient-centered, interpersonal relationships between patients and their doctors.
There is no app for patient engagement.
A reminder about patient responsibility and partnership with your medical team. Quote:
But that is not what always happens. You explain, questions are asked (or often not), and there is little to no follow through (although I always dictate my findings and recommendations in the presence of the family, and ask 3 times if everything made sense, and if there are any questions). Almost everything we talk about has written material supplementing our discussions. Sometimes I ask the family to repeat back to me what they want to do so I can be sure we are on the same plane.
This is where I become frustrated. At what point have I done everything I can do? I try to educate, but there has to come a point where the family (and appropriate age patient) needs to take some responsibility. With the internet and all the educational materials we provide, the layers of helpers that are available in our office to speak with patients, including myself, I think that communication is sufficient. But it has to be a partnership, a two way street. And I hope for those of you who are planning a trip to the doctor in the near future, think about this patient encounter I have described and decide how you can help your doctor better help you.
Help your doctor better help you.