There continues to be a crucial failure on the part of medicine to ascertain and communicate to patients and families dire prognostic situations. A Research in Action newsletter from the Agency for Healthcare Research and Quality (AHRQ) addressed this very issue, with the AHRQ writers noting: “According to patients who are dying and their families who survive them, lack of communication with physicians and other health care providers causes confusion about medical treatments, conditions and prognoses, and the choices that patients and their families need to make”.
As stated in the AHRQ document, someone with terminal cancer generally follows an expected course of dying. But for the people many primary-care nurse practitioners and physician assistants care for—those suffering from chronic conditions such as heart disease or the frailty of old age—the pattern is somewhat different. Periods of slowly declining health are repeatedly interspersed with sudden severe episodes of illness. “Patients are not often told that their chronic disease is terminal,” the AHRQ authors affirm, “and estimating a time of death for people suffering from chronic conditions is much more difficult than it is for those dying of cancer.”
Nevertheless, research is clear that the overwhelming majority of Americans would want to know if they were severely ill and likely to die. Surveys have consistently demonstrated that patients and families would want their physicians to give them the bad news; this responsibility may often fall to nurse practitioners or physician assistants, who frequently are the patient’s most consistent provider of care.
This subject came to my attention while interviewing a senior renal nurse who told me that she finally came out and informed a patient and the patient’s family that the patient was dying when nobody else was being direct. By doing this, the nurse gave the family the opportunity to move up a scheduled wedding for the patient’s daughter. The civil ceremony was held in the hospital with nurses as bridesmaids, the dietary service performing miracles and providing a feast, and other staff providing music, videotaping, and decorations. The patient never received dialysis again and she died a couple of days later. She and her entire family were ecstatic at having been told the truth and given the impetus to complete an important and joyous task.
In addition, as the AHRQ report pointed out, such discussions help patients and families iron out their differences regarding end-of-life care.
According to the nurse with whom I spoke, delivering difficult news in time for patients and families to make certain decisions has become part of the duties of many nonphysician providers. Whether it is or should be the place of nurse practitioners and physician assistants to roust patients or families out of denial and try to help them accept and act on a dire prognosis will no doubt precipitate vociferous debate. But if doctors do not rise to the challenge posed by dying patients, then they need assistance from the other members of the medical team.
In any case, I remain absolutely convinced that neither patients nor families should continue to have to beg for a prognosis as they approach the terminus of life. They should not be denied the opportunity to bring life to an orderly end.
What do you think? n