Refusal

You know it's going to be a tough palliative care consultation if they wait until the day the patient is discharged before they call you, or if the patient is already crying when you walk in the door. With Serena, both were true. "She's being discharged to rehab today," the referring doctor told me, "but she seems reluctant to go. Can you talk with her about her goals and what she really wants?"

You might wonder why other doctors feel they need a specialist in palliative care to find out what their patients are hoping for, but such is the nature of modern medicine. Serena's first words, spoken through tears after I introduced myself, were, "Why are they sending me to rehab? I just want to die." That's the signal for many physicians to run for the exits. The experienced palliative care doc pulls a chair up close to the bed, leans forward, and asks something like, "What should I know about you to be sure you get the best care possible?" That's what I did. And so Serena told me her story:

A professional woman in her mid-sixties, she'd contracted a form of hepatitis over 20 years before. The virus had destroyed her liver. We have no good treatments for this problem, only delaying tactics, and Serena had run out of delays. Her liver disease was end-stage; she was jaundiced with a swollen belly and no energy; and she was likely to die in a few months. Her only hope was a liver transplant, but she had studied the procedure and decided that the risks weren't worth the benefits. "My liver doctor tells me to keep on getting treated," she said. "He tells me that I could see Paris. Well, I've already been to Paris four times. I'm miserable, and I don't see the point of going on."

Some patients hope they'll run into Dr. Kevorkian when they hear palliative care is coming to see them. It's my ethical responsibility to disappoint them that, no, I won't give them a shot to make them sleep forever and to tell them that, no, physician-assisted suicide is not legal in our state. I commiserated with Serena about the rehab plan. I agreed that it would probably not help and that she'd be in a nursing home soon. (She'd long passed the point where she could care for herself at home.) "But you do have an option that would get you what you seem to be hoping for," I told her. "You could simply decide to stop eating and drinking."

It turns out that death follows within a week or two after a patient elects to refuse anything to eat or drink. You'd think it's horrible, but it's not. People who've gone without eating for long periods -- hunger strikers, those on religiously motivated fasts -- say that their sense of hunger disappears after a couple of days. And the sense of thirst arises from the mouth, so keeping the mouth moist with an occasional ice chip or one of the commercial products developed for dry mouth means that the patient won't feel thirsty.

"You can make this choice anytime you like," I told her. "I can create a safe space for you in the hospital to die peacefully if you make that decision. All of our usual medications to treat pain and other symptoms will be available. And if you suddenly decide that this is a crazy idea and that what you really want is a burger and a milkshake, we'll call room service immediately." I gave Serena my card and told her that I would help her if she ever decided to call.

About a month later, she did just that. I made arrangements to bring her to my hospital, where she enrolled in hospice under the diagnosis of end-stage liver disease. I told the nurses the plan, and they told me they were in complete agreement. With that, Serena began her voluntary refusal of food and fluids.

Over the first two days, she had panicky episodes and wondered out loud if she was doing the right thing. I reminded her that the choice was completely hers, and that I could get her a glass of water in ten seconds and a tray of food in less than half an hour. She asked for and received medication for anxiety. On the third day, she requested water and a sandwich, which we provided immediately. She took a few sips and a couple of bites. Her two remaining family members arrived from out of town that same day. They all talked privately, and Serena told me that she really was done. Her relatives agreed. She declined any more food or fluids. Within 24 hours she was unarousable. Her face was relaxed, her forehead smooth, and she was breathing easily. She died two or three days later, never regaining consciousness and never showing any signs of distress. Her family thanked my staff and me for the excellent care we had provided.

When I tell this story to other doctors, some of them recoil in horror. But I think we did right by Serena. Whether you call it VSED (voluntarily stopping eating and drinking) or VRFF (voluntary refusal of food and fluids), this is a humane and painless way for a patient to take control and relieve intolerable suffering. All you have to do is say no.