Conversations 101: How to Talk With Patients Facing Death

Fran Johns

Jack Kenny's doctors told him exactly what the prognosis was (very bad) and exactly was his treatment options were (very bad to worse) when his cancer was discovered. The first option, which they explained would probably bring him the longest remaining lifespan, would be to remove his tongue, his voice box and a portion of his jaw. He declined. Subsequent options involved a trip to Seattle for external beam radiation and a trip to Southern California for brachytherapy. Either experience (Kenny endured both in turn) would be enough to finish off a less stalwart soul. "They told me exactly how bad it would be," he says now; "I guess I didn't quite believe them."

But Kenny and his longtime companion, Marjorie Brandon, are enthusiastic in their praise of the way his Veterans Administration physicians handled those conversations about difficult times ahead, up to and including projections that he would probably not live to see his next birthday. They wanted straight talk; they got straight talk. The indomitable pair are typical of many now-grown children of the Depression who have lived successful, no-nonsense lives; they like to laugh in the face of impending doom and they disdain equivocation of any sort. Throughout Kenny's terminal illness they have felt close to, and understood by, Kenny's doctors.

The lesson of Kenny's experience is simple but profound: Knowing the patient is the key to successful doctor-patient communication. A woman of the same generation reports being devastated more by the way her physician delivered the news of her terminal disease than by the fact of the disease itself.

"His opening comment was 'Here's the situation.' I felt like a case in one of his textbooks," she says. "If he had just taken a minute to say 'I'm sorry,' or perhaps 'I wish I had better news.' But he just wanted to lay everything out on the table and then get on to the next patient."

This particular 76-year-old felt disconnected from her physician. She says she didn't want false hope or to be protected from the facts of her case, but just to be seen as a real person. And unlike Jack Kenny, she was far from ready for unadorned straight talk.

Though there is no one-size-fits-all textbook chapter on talking with dying patients, there are guidelines that can make the experience less frightening for physicians and patients alike: Slow down, listen and pay attention.

Paying attention is important because most dying patients are unsure of what questions to ask. Words-the primary communication tool available to both sides-can instead be a stumbling block. For many (if not most) physicians, a further stumbling block is the tendency to see death as a personal failure. The dual realities are that end-of-life questions have common, discernible themes, and that death happens. It is very rarely the doctor's fault.

Individuals face the prospect of dying with a wide assortment of questions they may or may not be able to articulate. Will it hurt? How long will I suffer? Can I stay in control? Will I be abandoned? What choices do I have? Often the patient's physician, even if he or she has no close, long-term relationship to the dying person, can offer answers to these questions. And even partial answers can bring peace.

Harriet, a woman in her early sixties who was dying of cancer, had seen her own mother through the dying process with a similar disease. Her mother had experienced months of pain, suffering and indignity. Above all else Harriet wanted to avoid a similar fate. She declined the chemo that doctors said might extend her life for a few months, and expressed the wish simply to work at her highly satisfying professional position until as close as possible to the day she died. Harriet liked and trusted her oncologist, but worried that he might not fully understand her.

A few months before her death Harriet asked, "How do you feel about terminal sedation?" Her oncologist answered, "You are the person who is hurting. You will decide how much pain medication you need. I will authorize as much as you need."

In a sense, Harriet and her physician were playing a word game. She knew he could not give her the magic pill she wanted if and when she decided she could take no more. He knew she needed to stay in control and to avoid undue pain. By giving her assurance on both counts he gave her the ultimate gift of peace. Harriet died at her daughter's home, maximum sedation keeping her comfortable until she slipped into a coma.

Word games are seldom necessary, but physicians are wise to consider them. References to pain, distress, comfort and control are easier to handle than "you're dying," although they are addressing exactly that. One dying 48-year-old woman said, "Nobody wants to hear 'There's nothing more we can do.' What I want to hear is 'I'll do everything I can.' That doesn't mean anybody's going to work a miracle; it means-for me at least-that my doctor's trying to keep me from hurting. I'm smart enough to know she can't keep me alive forever."

Though most dying patients would welcome a miracle, the promise to "do what I can" or simply to stay with them covers the primary issue and requires no telling of lies.

Often the hardest thing for a physician is simply getting to the conversation itself. Kaiser oncologist Brian Lewis, MD, tells of leaving a class about talking with dying patients in which the professor advised just forcing oneself to sit at the bedside for five minutes. Dr. Lewis had, at the time, a patient who was a personal friend, an exceptionally strong woman who was terminally ill but had never spoken of her impending death.

Dr. Lewis walked into his patient's room, drew up a chair beside the bed and sat. "Those were the longest five minutes I think I had ever spent," he says. But eventually his patient did in fact begin to talk about her apprehensions, and to raise the questions that had clearly been long in the back of her mind.

Once the conversation has been started and the physician has carefully brought in anyone else involved (a spouse, partner or friend needs to be looked in the eye and acknowledged), questions and fears surrounding terminal disease might be addressed with this general format:

1. Assessment. "What do you want to know about your illness?" gives the patient a chance to ask, or not ask, specific questions about how much longer he might live, what treatment options should be considered and what they would involve, etc. If the physician is attentive to unasked but significant questions, these can be raised another time.

2. Dialogue. "Let's look at all this." Address the patient according to who he or she is-a fearless stoic, a fragile worrier, a cerebral cynic call for their own responses. If the conversation about the illness and what lies ahead is conducted thoughtfully and unhurriedly, most patients will give their physicians clues.

3. Assurance. Dying patients simply want to know their physicians will stick around and will do what they can. Few of them want false hopes or empty promises. But the more certain they are that they won't be abandoned and will be kept comfortable, the better their final days and months will be.

Physician/ethicist Robert V. Brody, MD, clinical professor of medicine at UCSF and director of the Ethics Service at San Francisco General Hospital, teaches regularly on end-of-life care and how best to communicate with dying patients and their families. He lists three considerations paramount to effective communication with dying patients: setting, timing and words. If the setting is appropriate (face-to-face with trusted others present) and the timing is right (the physician is not overtired or rushed, the patient not in pain or heavily medicated), the right words can come.

Jack Kenny wanted straight talk. Brian Lewis's friend needed the encouragement of his time. Every death is unique. Physicians whose words bring peace give a very special gift.

Fran Moreland Johns, author of Dying Unafraid, writes frequently on end-of-life issues for print and online publications. A San Francisco freelance writer, she is current board chair of Compassion in Dying of Northern California, and serves on the steering committee of the Bay Area Network for End of Life Care and on the board of the San Francisco Interfaith Council. This article is part of a forthcoming book, But I Don't Know What to Say...