(Reprinted from the July 20, 1994 issue of the Journal of the
American Medical Association and revised for the non-medical reader
by Ira Pilgrim, with the permission of the author.)
My mother died a few weeks ago. She wanted me to tell you how.
Her name was Virginia. Up until about 6 months ago, at age 84, she was the proverbial "little old lady in sneakers." After my father died of colon cancer several years ago, she lived by herself in one of those grand old Greek revival houses you see on postcards of small New England towns. Hers was in Middlebury, Vermont.
My mother was very independent, very self-sufficient, and very content. My brother and his family lived next door. Although she was quite close to them, she tried hard not to interfere in their lives. She spent most of her time reading large print books, working word puzzles, and watching the news and professional sports on TV. She liked the house kept full of light. Every day she would take two outings, one in the morning to the small country store across the street to pick up the Boston Globe, and one in the afternoon to the Grand Union across town, to pick up some item she purposefully omitted from the previous day's shopping list. She did this in all but the worst weather. On icy days, she would wear golf shoes to keep from slipping and attach spikes to the tip of her cane. I think she was about 5 feet 2 and 120 pounds, but I am not certain. I know she started out at about 5 feet 4, but she seemed to shrink a little bit each year, getting cuter with time as many old people do. Her wrinkles matched her age, emphasizing a permanent thin-lipped smile that extended all the way to her little Kris Kringle eyes. The only thing that embarrassed her was her thinning gray hair, but she covered that up with a rather dashing tweed fedora that matched her Talbots outfits. She loved to tease people by wearing outrageous necklaces. The one made from the front teeth of camels was her favorite.
To be sure, she had had her share of problems in the past, But she was a walking tribute to the best things in American medicine. Coming from a family of four generations of physicians, she was fond of bragging that, but for lens implants, hearing aids, hip surgery, and a tranquilizer, she would be blind, deaf. bedridden, and depressed. At age 84, her only problems were a slight rectal prolapse (a condition where the rectum protrudes to the outside), which she could reduce fairly easily, some urinary incontinence, and a fear that if her eyesight got much worse she would lose her main pleasures. But those things were easy to deal with and she was, to use her New England expression, "happy as a clam."
"David, I can't tell you how content I am. Except for missing your father, these are the best years of my life."
Yes, all was well with my mother, until about six months ago. That was when she developed acute gall stones. From that point on, her health began to unravel with amazing speed. She recovered from the gall bladder surgery on schedule and within a few weeks of leaving the hospital was resuming her walks downtown. But about six weeks after the surgery she was suddenly hit with a case of severe diarrhea, so severe that it extended her rectal prolapse to about 8 inches and dehydrated her to the point that she had to be readmitted. Other complications quickly set in. She developed a yeast infection of the mouth, apparently due to the antibiotic treatment for her diarrhea. For some reason that was never fully determined, she also became anemic, which was treated with iron, which made her nauseated. She could not eat, she got weak, her skin itched, and her body ached. Oh yes, they also found a lump in her breast, the diagnosis of which was postponed, and a heart problem. Needless to say, she was quite depressed.
Her depression was accentuated by the need to deal with her rectal prolapse. On the one hand, she really disliked the thought of more surgery. On the other hand, the prolapse was very painful. The least cough or strain would send it out to rub against the sheets, and she could not push it back the way she used to. She knew that she could not possibly walk to the Grand Union again unless it was fixed.
It was at that time that she first began to talk to me about how she could end her life gracefully. As a physician's wife, she was used to thinking about life and death and prided herself on being able to deal maturely with the idea of death. She had signed every living will and advance directive she could find, and carried a card that donated her organs. Even though she knew they would not do anyone much good ("Can they recycle my artificial hip and lenses?"), she liked the way the card announced her acceptance of the fact that all things must someday end. She dreaded the thought of being in a nursing home, unable to take care of herself, her body, mind, and interests progressively declining until she was little more than a blank stare, waiting for death to mercifully take her away.
"I know they can keep me alive a long time, but what's the point If the pleasure is gone and the direction is steadily down, why should I have to draw it out until I'm 'rescued' by cancer, a heart attack, or a stroked That could take years. I understand that some people want to hang on until all the possible treatments have been tried to squeeze out the last drops of life. That's fine for them. But not for me."
My own philosophy, undoubtedly influenced heavily by my parents, is that choosing the best way to end your life should be the ultimate individual right -a right to be exercised between oneself and one's beliefs, without intrusions from governments or the beliefs of others. On the other hand, I also believe that such decisions should be made only with an accurate understanding of one's prognosis and should never be made in the middle of a correctable depression. So my brother, sister, and I coaxed her to see a rectal surgeon about having her prolapse repaired and to put off thoughts of suicide until her health problems were stabilized.
With the surgeon's help, we explored the possible outcomes of the available procedures for her prolapse. My mother did not mind the higher mortality rates of the more extensive operations -in fact, she wanted them. Her main concern was to avoid rectal incontinence, which she knew would dampen any hopes of returning to her former lifestyle.
Unfortunately, that was the outcome she got. By the time she had recovered from the rectal surgery, she was totally incontinent "at both ends," to use her words. She was bed ridden, anemic, exhausted, nauseated, achy, and itchy. Furthermore, over the period of this illness her eyesight had begun to fail to the point she could no longer read. Because she was too sick to live at home, even with my brother's help, but not sick enough to be hospitalized, we had to move her to an intermediate care facility.
On the positive side, she had regained her clarity of mind, her spirit, and her humor. But she was very unhappy. She knew instinctively, and her physician confirmed, that after all the insults of the past few months it was very unlikely she would ever be able to take care of herself alone or walk to the Grand Union. That was when she began to press me harder about suicide.
"Let me put this in terms you should understand, David. My 'quality of life'-isn't that what you call it- has dropped below zero. I know there is nothing fatally wrong with me and that I could live on for many more years. With some luck I might even be able to recover a bit of my former lifestyle, for a while. But do we have to do that just because it's possible? Is the meaning of life defined by its duration? Or does life have a purpose so large that it doesn't have to be prolonged at any cost to preserve its meaning?
"I've lived a wonderful life, but it has to end sometime and this is the right time for me. My decision is not about whether I'm going to die -we will all die sooner or later. My decision is about when and how. I don't want to spoil the wonder of my life by dragging it out in years of decay. I want to go now, while the good memories are still fresh. I have always known that eventually the right time would come, and now I know that this is it. Help me find a way."
I discussed her request with my brother and sister and with her nurses and physician. Although we all had different feelings about her request, we agreed that she satisfied our criteria of being well-informed, stable, and not depressed.
For selfish reasons we wanted her to live as long as possible, but we realized that it was not our desires that mattered. What mattered to us were her wishes. She was totally rational about her conviction that this was "her time." Now she was asking for our help, and it struck us as the height of paternalism (or filialism?) to impose our desires over hers.
I bought Final Exit (by Derek Humphry) for her, and we read it together. If she were to end her life, she would obviously have to do it with pills. But as anyone who has thought about this knows, accomplishing that is not easy. Patients can rarely get the pills themselves, especially in a controlled setting like a hospital or nursing home. Anyone who provides the pills knowing they will be used for suicide could be arrested. Even if those problems are solved and the pills are available, they can be difficult to take, especially by the frail. Most likely, my mother would fall asleep before she could swallow the full dose. A way around this would be for her to put a bag over her head with a rubber band at her neck to ensure that she would suffocate if she fell asleep before taking all the pills. But my mother did not like that idea because of the depressing picture it would present to those who found her body. She contemplated drawing a happy smile on the bag, but did not think that would give the correct impression either. The picture my mother wanted to leave to the world was that her death was a happy moment, like the end of a wonderful movie, a time for good memories and a peaceful acceptance of whatever the future might hold. She did not like the image of being a quasi-criminal sneaking illegal medicines. The way she really wanted to die was to be given a morphine drip that she could control, to have her family round her holding her hands, and for her to turn up the drip.
As wonderful as that might sound, it is illegal. One problem was that my mother did not have a terminal condition or agonizing pain that might justify a morphine drip. Far from it. Her heart was strong enough to keep her alive for 10 more years, albeit as a frail, bedridden, partially blind, partially deaf, incontinent, and possibly stroked-out woman. But beyond that, no physician would dare give a patient access to a lethal medicine in a way that could be accused of assisting suicide. Legally, physicians can provide lots of comfort care, even if it might hasten a patient's death, but the primary purpose of the medicine must be to relieve suffering, not to cause death. Every now and then my mother would vent her frustration with the law and the arrogance of others who insist that everyone must accept their philosophy of death, but she knew that railing at what she considered to be misguided laws would not undo them. She needed to focus on finding a solution to her problem. She decided that the only realistic way out was for me to get her some drugs and for her to do her best to swallow them. Although I was very nervous at the thought of being turned in by someone who discovered our plan and felt it was their duty to stop it, I was willing to do my part. I respected her decision, and I knew she would do the same for me.
I had no difficulty finding a friend who could write a prescription for restricted drugs and who was willing to help us from a distance. In fact, I have yet to find anybody who agrees with the current laws. ("So why do they exist?") But before I actually had to resolve any lingering conflicts and obtain the drugs, my mother's course took an unexpected and strangely welcomed twist. I received a call that she had developed pneumonia and had to be readmitted to the hospital. By the time I made contact with her, she had already reminded her attendants that she did not want to be resuscitated if she should have a heart attack or stroke.
"Is there anything more I can do?"
Pneumonia, the old folks' friend, I thought to myself. I told her that although advance directives usually apply to refusing treatments for emergencies such as heart attacks, it was always legal for her to refuse any treatment. In particular, she could refuse the antibiotics for the pneumonia. Her physician and nurses would undoubtedly advise her against it, but if she signed enough papers they would have to honor her request.
"What's it like to die of pneumonia? Will they keep me comfortable?"
I knew that without any medicine for comfort, pneumonia was not a pleasant way to die. But I was also confident that her physician was compassionate and would keep her comfortable. So she asked that the antibiotics be stopped. Given the deep gurgling in her throat every time she breathed, we all expected the infection to spread rapidly. She took a perverse pleasure in that week's cover story of Newsweek, which described the spread of resistant strains.
"Bring all the resistant strains in the hospital to me. That will be my present to the other patients."
But that did not happen. Against the odds, her pneumonia regressed. This discouraged her greatly -to see the solution so close, just to watch it slip away.
"What else can I do? Can I stop eating?"
I told her she could, but that that approach could take a long time. I then told her that if she was really intent on dying, she could stop drinking. Without water, no one, even the healthiest, can live more than a few days.
"Can they keep me comfortable?"
I talked with her physician. Although it ran against his instincts, he respected the clarity and firmness of my mother's decision and agreed that her quality of life had sunk below what she was willing to bear. He also knew that what she was asking from him was legal. He took out the IV and wrote orders that she should receive adequate medications to control discomfort.
My mother was elated. The next day happened to be her 85th birthday, which we celebrated with a party, balloons and all. She was beaming from ear to ear. She had done it. She had found the way. She relished her last piece of chocolate, and then stopped eating and drinking.
Over the next four days, my mother greeted her visitors with the first smiles she had shown for months. She energetically reminisced about the great times she had had and about things she was proud of. (She especially hoped I would tell you about her traveling alone across Africa at the age of 70, and surviving a capsized raft on Wyoming's Snake River at 82.) She also found a calming self-acceptance in describing things of which she was not proud. She slept between visits but woke up brightly whenever we touched her to share more memories and say a few more things she wanted us to know. On the fifth day it was more difficult to wake her. When we would take her hand she would open her eyes and smile, but she was too drowsy and weak to talk very much. On the sixth day, we could not wake her. Her face was relaxed in her natural smile, she was breathing unevenly, but peacefully. We held her hands for another two hours, until she died.
I had always imagined that when I finally stood in the middle of my parents' empty house, surrounded by the old smells, by hundreds of objects that represent a time forever lost, and by the terminal silence, I would be overwhelmingly saddened. But I wasn't. This death was not a sad death; it was a happy death. It did not come after years of decline, lost vitality, and loneliness; it came at the right time. My mother was not clinging desperately to what no one can have. She knew that death was not a tragedy to be postponed at any cost, but that death is a part of life, to be embraced at the proper time. She had done just what she wanted to do, just the way she wanted to do it. Without hoarding pills, without making me a criminal, without putting a bag over her head, and without huddling in a van with a carbon monoxide machine, she had found a way to bring her life gracefully to a close. Of course we cried. But although we will miss her greatly, her ability to achieve her death at her "right time" and in her "right way" transformed for us what could have been a desolate and crushing loss into a time for joy. Because she was happy, we were happy.
"Write about this, David. Tell others how well this worked for me. I'd like this to be my gift. Whether they are terminally ill, in intractable pain, or, like me, just know that the right time has come for them, more people might want to know that this way exists. And maybe more physicians will help them find it." Maybe they will. Rest in peace, Mom.