Hawaii’s World
HOW to tell patients the bad news that their ailment can't be cured? Breaking bad news
to patientsKeep Kleenex handy, is one bit of practical advice.
There's quite a bit more in a handbook on End-of-Life Care prepared especially for physicians nationwide and being introduced at statewide seminars by the Hawaii Medical Association and the John A. Burns School of Medicine.
Other key rules:
Putting the patient in control also becomes important. There will be treatment choices to be made, possibly over a very long period. The patient gains a sense of empowerment by being the person to make them.Don't delegate. Do it yourself.
Sometimes families will say they don't want the patient to know the prognosis. Negotiate, but the patient's decision should be respected in the end.
It is all right to come back and ask again later for permission to be frank.
The trouble with not telling is that ignorance stands in the way of informed decision-making. My particular example is hospice care. It emphasizes comfort over curing. It provides physical comfort through pain control. It addresses spiritual and mental comfort. It encourages tidying up affairs and mending broken relationships. It helps survivors adjust.
It can be administered at home or in an institution. About 20 percent of all dying patients now request it, often at the suggestion of their physicians. The ideal number would be two or three times that.
The ideal comfort treatment period before death would be months. But just a few weeks is common because of late referrals. Some referrals come only a day or so before death, far too late to be useful.
Most insurers will cover hospice. But hospice has to be requested, not forced on people. The patient who is uninformed about his or her illness is denied this humanitarian option. To choose to continue aggressive treatment is also OK.
The instruction course I refer to is called Education for Physicians on End-of-Life Care. In 1999 and 2000 there will be nine physician seminars in Hawaii with participants encouraged to become teachers and take the slide-based presentation back to their own hospitals and clinics.
The Robert Wood Johnson Foundation funded its development.
AN introductory chapter notes life expectancy was only 50 years in the early 1900s, that those who lived to be adults might survive into their 60s but very few reached ages considered normal today.
Caring and comfort then got major emphasis because few remedies were available. Terminal periods were mostly short. Today we have a "death-denying society" and a remarkable ability to prolong life. Only 10 percent die suddenly.
The other 90 percent experience protracted life-threatening illnesses. These may have a relatively short terminal period, as with cancer, or a years-long decline with periodic crises, as with congestive heart failure, emphysema, or Alzheimer's type dementia.
Today there is widespread failure to face up to the truth that death is the fate of all of us. To approach death with better understanding and compassion is the laudable object of Education for Physicians for End-of-Life Care. We should all wish it success, for our own good.
A.A. Smyser is the contributing editor
and former editor of the the Star-Bulletin
His column runs Tuesday and Thursday.