The Quality of Mercy

When Hope is Hard to Find

Barbara had a rare neurologic disorder. Two years ago she had begun requiring a walker and now she could not able to get out of her chair without help. For a while they thought she had Parkinson’s disease, which her symptoms matched. That she hadn’t responded to Parkinson’s medication meant that it was something else, either changes in her blood vessels or a genetic condition. Barbara sighed sadly. Her mother, aunt and uncle had had the same illness, and it mystified their doctors, too. Their symptoms had progressed more and more rapidly. Barbara shuddered to remember how first their bodies had betrayed them, then they had lost their very selfhood to dementia. Even now the illness was terrible enough. Barbara could move only slowly, and often froze up, completely imprisoned in her body, stationary against her will. She lived in a wheelchair, had difficulty swallowing solid foods, and sometimes had difficulty holding a book or speaking with her husband.

I examined Barbara. Her examination findings were essentially as the neurologist had described. Her husband and I helped her up out of her wheelchair and, with support and her feet far apart, she was able to take a few short steps. She could barely move her left arm.

A Patient Asks for Control

Barbara and her husband came to me because she wanted to be able to end her suffering. Her neurologist had written in his report that she was “miserable in the sense that ‘this dying gig is taking too long.’” She had asked for the death with dignity option. He knew she did not meet the strict Washington State criteria and so wrote in the record that he “tried to offer moral support that she is not alone in suffering.” You can imagine how weak that “moral support” felt. She asked her family physician to prescribe medication so that she could end her life. He did not feel that she met the guidelines either and had to turn her down.

Still hoping there was some way the law could apply to them, Barbara and her husband came to me, referred by a physician who had helped shepherd Washington State’s “Death With Dignity Act” through the legislature. Barbara was concerned that as time went on, she would lose, as did her relatives, her ability to think and speak. She would be unable to take the action she felt right for her. She did not want to become totally helpless. She wanted her husband to remember her as a vibrant and loving partner, not as a bed-ridden body that perspired, ate, excreted, and moaned. Her husband obviously loved Barbara; he spent most of his waking hours caring for her and staying by her. She loved her husband, too, and wanted to say good-by while she still could.

Death with Dignity in Washington State

Back in the 1980s, there was a movement in Washington State to give suffering patients a right to end their own life. In 2008 the voters of Washington State passed a Death with Dignity Initiative. Current law stipulates that physicians may prescribe lethal medications under strict constraints – the patient must be diagnosed with a terminal illness, must be of sound mind, and not depressed.

Barbara and her husband very much wished for me to write the prescription for medications that would bring her a peaceful end. I very much wanted to help her, but to complete the paperwork for the state of Washington, one needs a corroborating physician. I telephoned her family doctor and her neurologist. Both strongly felt that she did not meet the state’s rigid qualifications. I knew that to write the prescription without the legal cover of this legislative act opens a physician to a murder charge.

They Come Asking for Mercy

Every doctor gets these requests, and I thought back over similar situations. Years ago a postal worker had appeared in our alcoholism treatment unit in Wisconsin. He’d sobered up there, stayed faithfully on the wagon, and then returned with abdominal pain. It didn’t take long to figure out that he had cancer and that there was little we could do to reduce his suffering. He literally begged me in that hospital to put something, anything, into his IV to end his near-constant abdominal cramping. Of course I could not. For reasons we don’t understand, his pain remitted and he went home to die. I drove out to his house a couple times to care for him near the end. One day he looked up and asked “do you think it would be okay if I had a glass of beer?” Appreciation for this man washed over me as I replied "Yes, this is the time for it." Two days later his wife called to tell me he had died.

Treating Pain Effectively

These days, we’re better at treating pain in people with terminal illness. There’s a growing recognition that it is not a bad thing to insert an IV with an on-demand morphine pump, and allow the patient and family to regulate the pump. We don’t say “be careful you don’t give them too much.” Rather we say, “If your loved one wishes to be awake and talk and keep the morphine going slowly, honor that. And if they tell you they need pain relief, don’t be afraid that you’re going to hasten the end. We actually don’t know whether pain relief hastens death or whether it slows it down. We’re not trying to outguess God here; we’re just doing the best we can.”

Death with Dignity

I supported the Death With Dignity Initiative. Still, in the case of Barbara, I had to tell her I just couldn’t write the prescription. I don’t think she was greatly surprised at my answer, but her husband gently reminded me that when their pet dog was suffering, the dog was given a merciful injection. Why did Barbara not get the same consideration? I ache to think about it; he is right.

I understand why Washington State has strict rules governing death. But some of the fears surrounding this process are unfounded. I recall Tanya M, a particularly religious woman, told me she opposed the law because, in her opinion, doctors can always relieve pain. I replied that I wished I could. There are many kinds of pain, including intractable headache, nausea, itching, dizziness, or any of a hundred kinds of misery that we can't always relieve. People can experience pain in a leg that has been amputated, pain so agonizing that on occasion they eventually kill themselves. She objected that this initiative would allow doctors to kill their patients. I asked how that would pencil out as a business model. She bristled.

One thing we've learned from the Death with Dignity laws in both Oregon and Washington states is that most of the time when we prescribe a fatal dose, people don't take it. Their dying process is bearable. Our achievement becomes that they and their family have the comfort of knowing that if their disease should bring unbearable torment, they won't be left to suffer needlessly.

The Holiday Season, nestled in the darkest times of the year, is part of the cycle of birth and death. Barbara’s story reminds us that we can’t add up the days and years and measure happiness by the length of time. What counts is the way we live and the meaning we create. All good things must come to an end, and we do our best to make them end well.

If you’d like to read more, Roger Ebert, knowing he was dying of cancer, wrote a touching article on Dr Jack Kevorkian and this subject.

Happy Holidays

As we enter this holiday season, let us give thanks for those things which are going right in our world, and resolve to repair those that need improving. We at the clinic wish you a joyous holiday season.