January/February  2006

The Zen of Science

Being There At the End of Life

Everybody dies: ourselves, our families, our friends, our enemies, everybody. You’d think we’d get pretty good at dealing with such a universal fact. Still, every culture needs its religious wisdom and myths to tame the sting of death. Siddhartha, the future Gautama Buddha, began his path to enlightenment only after he had observed misery, old age and death upon escaping the cloistered world constructed by his father to protect his son from these inescapable truths.

Though I’m not a clergyman (unless you consider science a religion of the modern age), my line of work has given me the privilege of helping many patients through the dying process. In doing so I strive to facilitate an experience that is comfortable and peaceful for the one who is dying, and meaningful for everyone involved. I’d like to share with you what I do and say to help people pass through death’s door.

First of all, I determine how capable the patient is to make decisions for himself. With few exceptions, a competent adult should be the one to decide about his own end-of-life care, which may be harder to accept than it seems.

Take, for example, the person with end-stage emphysema who, after a closely-spaced series of scary hospitalizations, each one leaving him weaker and more discouraged, has said that he definitely doesn’t want to go through the ordeal of intubation, respirator and intensive care ever again. Then, during what has been presumed to be his last hospital stay, he panics. As his breathing gets more labored, the level of carbon dioxide climbs and the level of oxygen falls in his bloodstream and brain. He loses mental focus and, as if by reflex, he asks one more time that everything be done to keep him alive and breathing. The family knows that, at best, this is the prelude to yet another uncomfortable, disheartening stay in the ICU.

What is the family to do? Just what the patient wants. Between acute episodes they can work and plan with the patient and the doctor for the next terminal event, being prepared, for example, to give generous doses of tranquilizer that counteract air hunger and panic. In the meantime, they have to take at face value what their competent loved one says he wants.

How about the non-competent patient? Now who makes treatment decisions? In the absence of a document such as a durable medical power of attorney which names who is to be the surrogate decision maker‹or any other clear prior statement, written or verbal, about what the patient wants‹the individual who knows best what the patient would choose is the best one to make those decisions. This may be the closest relative‹spouse, sibling, child‹or it may not be. It’s likely to be someone who’s been living with or near the patient, who’s known him and his values as they’ve evolved, especially in the recent past.

When a family cannot agree on who is to speak for an incompetent patient, the doctor has to do her best to weigh the views of opposing family members and make medical decisions accordingly. It commonly happens, for example, that the son who lives a thousand miles away and who has not been around to see his father’s decline nor to hear him express his desire to die, is the one to insist that everything be done to keep Dad alive.

On the one hand, everyone concerned ought to be given enough time, space and explanation to help them let go of Dad. On the other hand, no one person should be given veto power over choices made in Dad’s best interest. Medical decisions do not have to be unanimous.

Once the decision has been made to let go of life, the next thing that ought to be determined, if the patient is able, is what goals there are for the life that remains. The default objectives in healthcare are cure and longevity. When cure is impossible and death is imminent we often forget to ask the obvious question, “What do you want out of the life you have left?” The patient might choose to maximize comfort, or to live long enough to fish one more time, allow a brother to arrive from overseas, or make it to a holiday or an anniversary. With clear objectives, many subsequent decisions, such as whether or not to insert a feeding tube through the abdominal wall or a breathing tube into the trachea, become much easier to make.

When the patient is no longer well enough to set objectives, the default objective is comfort. At this point, whether the patient is in a hospital, nursing home or at home, I may write a “Comfort Measures Only” order. It means what it says. The patient gets no therapy but what keeps him comfortable: narcotics for pain, oxygen for shortness of breath, tranquilizers for anxiety, laxatives for constipation. It may well mean stopping insulin, heart medicines or antibiotics. Diagnostic testing and even measuring pulse and respirations are futile too (unless vital signs are used to give clues to pain, which does merit aggressive management).

As long as the patient can eat and drink and desires to do so, oral sustenance will be offered. Nutrients and hydration delivered by artificial means, via IV or feeding tube, will not routinely be provided. They are just as medical in nature as are drugs or surgery. The weight of expert opinion, based both on informal observation and on scientific studies, says that dehydration is a comfortable way to die, providing dry mouth and other discomforts are attended to.

I explain to families that stopping a treatment is no worse than not starting it. Pulling the plug on an IV or respirator is drastic. But it’s no more drastic than deciding not to hook the patient up in the first place. If a patient or family does decide to allow some non-comfort treatment because, perhaps, they are not quite ready to accept the end or because Uncle Joe’s ship won’t arrive for a few more days, I tell them that they can discontinue any medical intervention at any time.

The crying really starts when I explain to gathered family some ways to honor the patient as he dies. I tell them that, even when he appears totally unaware and non-reactive, the person they care about is still really there. So never carry on discussions as if the person weren’t present. (I take visitors out of the patient’s room and meet in the chapel or a conference room when I deliver this information.)

Hearing and touch are the last senses to go, I explain. Talk to and touch your loved one. When a person is facing death, there’s no room for dissimulation, not about anything. I suggest that people not hide their feelings; that they say what they need to say; that they cry as much as they need to. Crying in the presence of a person who is dying is a gift to everybody, including to the patient.

“Just be there,” I tell them. Come to think of it, just being there is a key to everything. What’s so cool about being with someone who’s dying, is that it’s easy to remember to really be there. And your whole-hearted presence can make a huge contribution to the quality of death for the patient and to the quality of life for all who survive. There’s nothing like looking death right in the eye to give you an appreciation for life. Just ask Buddha.

Marc Ringel, MD, is a family practitioner and writer based in Greeley, Colorado.