Each patient deserves more than a brief discussion about end of life decision-making. In “A Piece of My Mind” section of this month’s JAMA (volume 303, No.13, April 7, 2010) Paul Kettl M.D. argues for monetary compensation to be provided to physicians for end of life discussion and planning. He fails to make clear, however, that the decision rests with the patient, not what is best for the family.
Physicians must be careful not to wear too many hats and should turn to skilled clinical bioethicists and if necessary the Hospital Ethics Committee for review and recommendations. This will protect the patient’s interests and dignity and the physicians involved in the care from liability. Legal and ethical issues applying to the withdrawal of life sustaining care have become increasingly nuanced and face greater scrutiny and need for transparency. So physicians must be careful not to change hats from physician for the patient to physician for the family.
Once a patient losses capacity to make medical decisions, many physicians down play patient wishes and seek instead to satisfy family needs. It is not the degree of burden on the family that must inform decision-making. It is what the patient wants that prevails. The patient remains the patient, not the family. Indeed, it often relieves the family and friends from the overwhelming burden of “deciding” what will happen with respect to withdrawing or withholding life sustaining care. In my experience, surrogate decision makers feel more in control and can make more informed decisions if they are told: “This is really not your decision. We are not asking you to decide if your wife should live or die. We are asking you, because you know her best, to tell us what she would want if she could speak for herself. In order for you to do that the physicians caring for your wife will tell you all the important medical factors, just as they must tell any patient.”
Different disease processes have different disease trajectories that allow the physicians to plan – with their patient – for medical decisions that will have to be confronted down the road. For example, different types of dementia have varying trajectories of cognitive decline. Decline may run from 2.7 to 6.8 years from first diagnosis. Initially cognitive function may not change at all from 9 to 35 months. Thereafter rate of decline vary significantly among patients.
Dr. Kettl, a geriatric psychiatrist, advocates for payment to physicians to spend the necessary time when patients still have the opportunity to contemplate and develop health directives with the advice and discussion with family and close friends. It is a time when a patient may ask detailed question of her doctor about: prognosis of quality of life; distinguish between ordinary and extraordinary treatment decisions. It is also the time to make non medical decisions including where the want to die, at home or in hospital; the desires for the timing of initiating palliative care and to withdraw or withhold treatment that may only serve to extend the dying process. Early discussion avoids fear that comes when decisions must be made quickly and without the benefit of the patient’s clear and autonomous choices.
Withdrawing care that will result in the death of a patient cannot be treated cavalierly. That is why hospitals must have in place well developed procedures and protocols surrounding any decision to withdraw life-sustaining care. Compensating physicians is crucial to allow specific time, and timely discussion, with the patient before loss of capacity sets in.