Is it possible to reduce “futile care”?

Ken Murray, MD, recently wrote an excellent essay on how doctors die. To make a short story of it, doctors reject invasive, expensive, and ineffective treatment at the end of life that may prolong life for a short time but often with great suffering. It isn’t hard to understand why doctors reject such treatment seeing how it causes much suffering and provides so little benefit. It is a little harder to understand why so many non-doctor patients receive so much of this so-called “futile care.”

Murray offers some explanations of why patients receive so much expensive care that benefits no one. For one, doctors feel they are less likely to be sued for negligence if they “try everything” and never suggest withholding any treatment. Although the financial cost of such care is often astronomical, most patients and families of patients feel it is inappropriate to suggest that someone’s life is not worth the cost of care.

Clearly, if patients and their families understood the risks associated with invasive care as well as doctors, they would make the same decisions as doctors (unless, of course, we believe doctors are inherently more rational than everyone else in the world, and a handful of doctors may in fact believe just that). The problem is that patients do not understand the drawbacks as well as doctors (and other healthcare providers), and it is extremely difficult for a doctor to suggest turning down treatment without being occasionally accused of insensitivity or cruelty.

But I think this is an overly simplistic view. Many changes in medical practice in the past few decades have led us to some of these difficulties in communication. One problem is the way both doctors and patients view autonomy and informed consent. Both medical ethicists and the courts have declared that patients must make their own decisions regarding what treatments should be sought or declined. Many see the role of doctors as one of providing a list of treatment options, explaining the risks and benefits of treatment, and stepping back to let the patient decide on which treatment is appropriate. For better or worse, we have rejected the authority of the doctor to make medical decisions for us. This has been an important and generally positive development. For example, few if any feminist ethicists would suggest we should return to an era of medical paternalism.

However, patients go to doctors because the doctor is a medical authority. While patients rightly want the doctor to present treatment options, they do not necessarily want the doctor to withhold any opinion regarding which options are most suitable. Patients do not want to take orders from doctors anymore, but they do really want some suggestions, and they want to know why their doctors favor one suggestion over another. This happens routinely in day-to-day interactions, but it is more difficult in an emergency where someone is near death and decisions must be made quickly.

When a doctor says, “There is only one treatment available that may prolong your father’s life,” loving children are likely to reply, “Please do whatever you can to save our father.” Caregiver panic is one of the most common reason people end up dying in hospitals with unwanted treatment instead of in a quiet setting surrounded only by loved ones. I knew someone a few years ago who experienced this first hand. She was caring for her father, and she knew he was dying and wanted to die at home. However, when he began struggling for breath and appeared to be suffering, she called an ambulance. It would be counterintuitive for the staff on the ambulance or in the emergency room to assume she did not want her father rescued. She did want him rescued to the extent that she wanted him relieved, but she was not thinking clearly when she called for help. Of course the doctors assumed she wanted everything possible done to save her father.

Even when panic is not the driving force behind decisions, families may not understand that their loved one will die shortly in any case. Nor do they understand that further treatment may cause great pain for the few short days or weeks remaining. Communicating this reality is a skill that some doctors have, but many find it difficult for obvious reasons.

And one final note: I have heard doctors sometimes say, “The best I can offer you is an experimental drug that was just released,” or something to that effect. The word best is confusing to patients. Of course the patient will want the best treatment available, but they often fail to realize that even the best treatment available will lead to an undesirable outcome. Also, they do not understand that “best” means the medicine has the best chance of doing what it is designed to do. It does not mean it is the best option for care overall. I don’t want to say this is a common occurrence, but it is one I have observed.