What follows is an email debate between Melanie Lovell, a palliative care physician in Sydney, and Richard Smith, former editor of the BMJ and chair of Patients Know Best. The debate began when Richard asked if Melanie had seen the editorial that he had written with two colleagues arguing that we need to take a more positive attitude to death.
ML: The deaths of patients who accept their situation and make the choice to use the period prior to death to heal relationships, cement their legacy, and prepare themselves for death and their families for a future without them, can be beautiful, peaceful and even joyful times of celebration and thanksgiving. Of course they are sad times too. This contrasts sharply with deaths of those who deny death and can die without the preparation which is so helpful.
The denial is from both patient and doctor. My own view is that everybody involved knows the prognosis but enter a “dance of denial” where neither wishes to make a move towards reality. Some patients never take that step.
These are patients who by the time we see them are so traumatised by the medical interventions they have experienced that they are extremely distressed. These are patients who have lost the very control they are striving for.
Anna [Donald, a doctor, BMJ blogger, and friend of both Melanie and Richard who died of breast cancer] had a nice way of putting it. You reach for Everest (physical healing, life prolongation), but accept that you may not make it and prepare for that possibility. Once you have prepared (yourself and others) then you can focus on Everest until you’re ready to focus elsewhere—the sacred, etc. Allowing patients to express their wishes about care at the end of life early in the trajectory of illness and treatment is very empowering. It is a conversation that continues through the journey.
RS: I like the phrase “dance of denial.” I think of it as related to what I’ve described as “the bogus contract” between doctors and patients. If you’re interested you can read more here (and at the end of this blog). In essence, patients think that doctors can do more then they actually can and doctors are reluctant to confess to their limitations. A new contract would be an adult to adult relationship with full disclosure, recognizing that pain, sickness, and death are part of being human and cannot be eradicated.
ML: The bogus contract is an interesting idea. The perspectives are indeed polar. I think many patients today are less naïve but denial accompanies knowledge when the latter conflicts with the ideal—so the result is the same. The new contract is what we aim to achieve with our patients—everyone is different however, so contracts are individualised depending on needs and preferences.
RS: I agree that everybody is different—and just as there are many different ideas of a good life so there will be many ideas of a good death.
I do, however, think that the default position between a clinician and a patient should be adult to adult—even if , and this is perhaps where many real clinicians differ from me, it means inflicting discomfort on the patient, expecting him or her to take on burdens they may not want to shoulder. I suspect that you won’t agree.
ML: Yes—I do differ from you on that point. I think the distress caused by receiving information which is not sought, outweighs the potential benefit. I approach the patient who is unwilling to discuss these issues by making a medical decision not to offer inappropriate treatment. No need to discuss treatment which is futile
RS: I’m sure that you hold information back for the very best of reasons, but you are still infantilising that person. It’s a step forward from not telling patients that they have cancer or are going to die, which was normal when I was a junior doctor, but it’s still the wrong side of respecting the other person as an autonomous human being.
ML: I would say that far from infantilising that person, I am respecting their autonomy in allowing them to choose what information they receive. I do, however, very actively explore any cues they might give, indicating they do want to have more information, but are not equipped with the words to ask.
RS: Iain Chalmers, the founder of the Cochrane Collaboration, often quotes a BMJ article which he remembers but can never find in which a doctor described how he would say to patients: “Everybody wants different amounts of information, and I would like you to tell me how much you want. What I can say is that I will answer truthfully any direct question that you ask me.”
I can accept that this might be acceptable at the end of life, and my father, who died magnificently at home, wanted very little information.
But most of healthcare is not about end of life care. Indeed, most of healthcare these days is about patients with long term conditions. Ultimately such patients have to take the prime responsibility for their care—and doctors need to make that clear to them, even if the patient is disturbed by the information and responsibility. Otherwise, doctors are taking on responsibilities that they can’t discharge and are not acknowledging the responsibility of the individual. You cannot say to your accountant “I know my finances are a mess, but I’d rather not talk about it. You just do whatever you need to do.”
Doctors and patients: redrafting a bogus contract
The bogus contract: the patient’s view
- Modern medicine can do remarkable things: it can solve many of my problems
- You, the doctor, can see inside me and know what’s wrong
- You know everything it’s necessary to know
- You can solve my problems, even my social problems
- So we give you high status and a good salary
The bogus contract: the doctor’s view
- Modern medicine has limited powers
- Worse, it’s dangerous
- We can’t begin to solve all problems, especially social ones
- I don’t know everything, but I do know how difficult many things are
- The balance between doing good and harm is very fine
- I’d better keep quiet about all this so as not to disappoint my patients and lose my status
The new contract
Both patients and doctors know:
- Death, sickness, and pain are part of life
- Medicine has limited powers, particularly to solve social problems, and is risky
- Doctors don’t know everything: they need decision making and psychological support
- We’re in this together
- Patients can’t leave problems to doctors
- Doctors should be open about their limitations
- Politicians should refrain from extravagant promises and concentrate on reality
Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.
Melanie Lovell is a palliative medicine physician with HammondCare at Greenwich Hospital and the Mater in Sydney.