“If you have to feed me, shoot me” was the core of my mother’s advanced directive. She said this to me when I was fourteen years old and we went to the hospital to visit a classmate seriously injured in a sledding accident. As we passed one frail, elderly patient after the next along the hospital corridor, some being spoon fed by nurses, my mother’s mood became increasingly irritable. That’s when she stopped me outside my friend’s hospital room, peered into my eyes, and gave me her one sentence instruction on the way I was to handle the end of her life. Like many people, it was not death that frightened my mother, it was disability. My sisters and I did not have to review any legal paperwork to make the decision to remove my mother from the mechanical respirator twenty-four years later, after she suffered a massive intracranial hemorrhage. She was extremely proud and vivacious, up until the last year of her life when chronic kidney disease sapped her strength, and she suffered innumerable blows to her self-esteem and dignity, her sense of wholeness as a person, in the unfamiliar role of patient.
As a physician, especially a pulmonary and critical care specialist, I have cared for many people facing the end of life. My patients often die of illnesses like emphysema, where the lungs can no longer perform either, or both, of their primary functions–transferring oxygen from the air into the bloodstream, or eliminating carbon dioxide from our bloodstream back into the air. I make it a point to talk to my patients about their views of life and death, especially when they are well enough to have a conversation about such things, but ill enough to know that their lungs may “give out” in the relatively near future. I explain to them that the discussion is meant to give them decision-making power, that as their doctor, if they are unexpectedly too ill to speak for themselves, I need to help my colleagues treat them in a way they would want to be treated. This is an opportunity for me to explain terms like “CPR,” “defibrillation,” and “mechanical ventilation,” and to understand where they lie on the spectrum of wishes about “resuscitation.” People fall somewhere on this continuum, from wanting everything done indefinitely, to not wanting anything done except to be made comfortable. Most of my patients fall somewhere in between, where medical interventions are performed maximally, but only up until a point. And that point is usually where there is a decision among physicians and family members that the chance of a full recovery is unlikely. These decisions are not lines drawn and then stepped over, but rather are formed by massaging the clay of our uncertainty. Family meetings are essential, where doctors explain the challenges of treating all the medical problems that exist. In the office, patients are usually relieved to discuss their wishes and to speak out loud with family present. In the intensive care unit, patients often cannot speak for themselves, so loved ones must speak on their behalf. This is where previous discussions—when the person was well enough to discuss their plans for death—become so important.
People do not understand how generous it is to make their desires known, to remove the burden of this decision from family, who may have so many feelings of their own to contend with. Yes, we hear about legal paperwork, “advanced directives,” and powers of attorney for health and financial decisions, all of which are extremely valuable, but since most people still die without a will, we should admit we really are not very good at paperwork. At least we can do better to talk more to each other and to our patients, since in the end what matters most is someone knowing who you are.
—Melissa Lim, MD
Pulmonary, Critical Care, Sleep specialist
Redwood City, California