As Woody Allen famously said, “The bad thing about dying is that you don’t get to practice.” True, but one can certainly take steps to be prepared. I’m not talking about “getting your affairs in order,” as the old family physician would euphemistically say when telling someone they had 17 days to live. This is about the family and friends making the best of a bad situation when a loved one is very ill.
Do not accept as gospel that there is a finite time left. Marcus Welby may have known, but that kind of information is never certain. Every case is different; every patient will respond in a unique way. No physician can say anything more prognostically precise than generalities about how similar situations usually resolve themselves.
In order to lessen the understandable confusion that surrounds serious illness here are seven lessons that I learned over a career of attending critically ill patients.
First, be sure that all the facts distributed come from a reliable source. Particularly in today’s changing health care delivery system, it is hard to tell who is really in charge of the patient’s care. Often hospitals will assign inpatient care to a designated physician, sometimes unknown to the family and one who may change each day. Frequently there will be multiple doctors involved. Be sure that you get the name and reliable contact information of a single physician who will deliver the important data to the family. Too many sources invariably lead to misinterpretation.
Second, designate who that family person will be. In today’s litigious society, hospitals and doctors may not communicate with anyone whose name is not on the privacy form signed on admission. In my practice when there was difficult news to deliver, I tried to get everyone together in one room at the same time to hear what I said. Even if I had said the same thing to different family members at different times, invariably they were interpreted in unusual ways. Talking to one family member who is able to transmit the facts to the others in a reliable fashion is the key to avoiding misunderstandings.
Third, be sure that all your questions are addressed. Too often doctors talk down to the patient’s family and dismiss genuine concerns without really speaking to them. Do not let that happen. Families generally do not include health care professionals; that does not mean that your questions are unimportant. Impress on the physician that these legitimate concerns need to be answered to everyone’s satisfaction.
Fourth, be sure the information is shared accurately with family and friends. This is probably best done jointly or in print. If questions are raised that cannot be answered by the member who is the communicator for the family, then go back to the doctor.
Fifth, make it clear to the physician in charge that the family expects calls from the family representative to be returned in a timely manner. The family should be judicious in their requests and should be related to the general problem, not to less important matters of hour-to-hour progress.
Sixth, remember that the patient is often not a reliable source of information. The illness itself coupled with stress and medications can influence facts in a negative way. A variety of dynamics play into the patient’s perception of the illness and their ability to pass on accurate data may be compromised.
Finally, with today’s technology there is no reason a patient should have to endure severe anxiety and pain. Medications can be given safely that will eliminate those disturbing problems. Comfort can become the most important part of therapy.
Remember that death is the natural consequence of life. In the final days or months attention should be paid to enshrining the years spent together. Any efforts to achieve that are more than worthwhile. As we grow older the sad calls that illness is challenging someone close become more frequent. Understanding how the medical system should operate will make those tough times easier to manage.