Issue:  Vol. 48 / No. 13 / 29 March 2018

Managing our lives as they end


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The doctor delivers the news to the patient. It's not what he wants to hear. The doctor is sympathetic but direct. She knows he's shocked, frightened, angry. What can be done? She discusses treatment options. He has to make decisions. Is he prepared? Probably not. Are those close to him, those who will be involved in his care, able to guide him? Unlikely. In "Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers" (Da Capo Life Long, $16.99), Steven Z. Pantilat, MD, offers a realistic, humane approach to coping with devastating health issues.

Pantilat, a Distinguished Professor of Palliative Care at UCSF, is candid. "Serious illness is awful, horrible; there's no way to sugarcoat it or minimize it." Nothing can make aggressive lung cancer, ALS, Parkinson's Disease, dementia, heart failure, or a major stroke palatable. He understands the consequences of the diagnosis. "The impact is shocking, confusing, and depressing. When an illness is long-lasting, it disrupts our lives and drains our emotions, energy, and finances."

While the situation can't become good, it can become better. In clear, concise language, Dr. Pantilat describes a process that allows the patient to assess available treatments, the benefits, drawbacks, and limits of each, and helps him regain some measure of control over his life.

Physicians are trained and motivated to save patients. Depending on the illness, they often feel it's their duty, their moral and professional obligation, to suggest invasive treatments, even if the likelihood of a meaningful recovery is remote. The chapter "Prognosis: What doctors say, what they mean, and what patients hear," is revealing and helpful, because patients often focus only on the possibility, not the probability, of a cure.

Another excellent chapter discusses how the patient can manage his care. This includes interviewing doctors to find the right one. Personal style, or "bedside manner," is important. So are references, although other doctors generally aren't the best sources. They seldom see how their colleagues interact with patients. Nurses, on the other hand, are a great resource. They have insights into how patients respond to doctors. Other patients may also be helpful.

He stresses the importance of controlling pain, nausea, and other symptoms associated with the illness and the treatment. He uses case histories. One of the most touching involves his mother, diagnosed with cancer. Dr. Pantilat was so focused on healing her that he initially neglected the discomfort she was experiencing from a bladder infection. He realized how important keeping her comfortable was, especially as one hope after another for a cure or significant improvement was shattered.

He discusses hope and its benefits, as well as the mood swings that often occur. It's crucial not to neglect emotions, because they play a major part in coping with the illness. One of the most insightful chapters addresses the role that families – biological, legal, and of choice – can play. He emphasizes that attempting to manage without their help is at best naive. They want to help, can help, and the patient will need their help.

He encourages making good use of the time left, particularly the period the patient can be active and fully engaged. What does he want to do with that time? Is that goal realistic? If so, then it should be a priority. If the patient's legal affairs aren't in order, he should take care of that. He should make the difficult decisions about end-of-life care clear. Discuss them. Put them in writing. Don't abdicate those decisions to others. Only if they know what he wants can his loved ones honor his wishes.

His chapter on palliative care is characteristically helpful. Palliative care balances patient comfort with curative treatments. He discusses hospice care.

In "The End: What's It Like?" he writes, "When we think about death, we're filled with questions and fears. Will it be painful, distressing, or hard? How will we know? When will it happen? What will we feel? What comes next?"

He doesn't have the answers. But he shares his observations of what generally happens based on experience with dying patients. "Most of the time, the end of life is peaceful. Most seriously ill people die quietly, without drama." He summarizes the signs of imminent death: increasing weakness; diminished ability to care for one's self. For example, a patient with advanced cancer who spends more and more time in bed is usually two or three months away from death.

As death approaches, patients stop eating. Well-meaning loved ones urge him to eat, thinking that he'll get better. But not wanting food is a sign the body is simply shutting down, beginning the natural process of dying. "In the early stages of a serious illness, good nutrition is essential. However, at the end of life, most people are not hungry or thirsty."

When the end is very close, the patient becomes less alert. He will drift in and out of consciousness. Breathing becomes irregular. Can the unconscious patient hear his loved ones? Dr. Pantilat doesn't know, but he has noticed that patients often respond to familiar voices differently from his voice.

A hundred years ago, most people died at home, not in hospitals. Today, only one-third do. Often those in hospitals are in ICU, undergoing intrusive treatments or kept alive by mechanical means. Death at home is usually much easier for the patient, but can be challenging for his caretakers. Dr. Pantilat discusses what type of help is available and how it can be obtained.

Death's inevitability makes it an unpleasant topic. In "Life After the Diagnosis," Dr. Pantilat addresses our fears. His book shows that we can plan for death. He offers tools to manage a serious illness and prepare for its consequences. He has shown us how to make our lives better right to the end. No physician can do more.

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