Patient Referral

Say thank you to doctors

By Perry Farmer

A strong, active man in his 60s, my father-in-law struggled and fought for months - in and out of the hospital, experiencing chemotherapy, radiation, and a long-term-care stay. He suffered from cancer, pneumonia, and multisystem failure. He could live for hours - or a few days.

We knew his end-of-life wishes from the advanced directive and living will he had signed. So we were shocked when his primary-care physician said, "If you three sisters agree, I'll do everything I can." She seemed to be ignoring my father-in-law's decisions and dropping all of the guilt and indecision back on the patient's daughters. Confused and bewildered, they agreed to a family meeting. A different physician attended. "There is nothing more to do," he explained gently. "No other treatment will extend or improve his quality of life." His suggestion: Turn off the machines and use comfort measures.

My father-in-law spent the next hour surrounded by family. He never regained consciousness. With his hands being held in a comfortable, quiet, peaceful, loving environment, he died.

I have nothing but admiration and affection for these doctors. I know each suggested what he or she thought was the best treatment option. But why was it so hard for the primary-care physician to give the news to our family? Why did the news from the second physician seem to be such a shock for us? End-of-life discussions are so difficult, but also so necessary.

PBS's recent documentary Being Mortal opens a window into the often excruciating choices that doctors need to make. Tell a 34-year-old mother with stage 4 lung cancer to forgo chemotherapy so she can hold her newborn? In his best-selling book of the same name, Dr. Atul Gawande bravely admits that he would have advised this patient and many others differently. But, he says, for doctors, conceding that a patient might be better off stopping curative treatment is seen as declaring defeat.

It's no wonder. Doctors are trained to keep people alive. But Gawande is helping change the conversation about death and dying in America. It's not just about mortality or living longer. It's about understanding patients' wishes. It's about living better.

Today is National Doctors' Day. Established by President George H.W. Bush, it's a day to recognize the sacrifice of the men and women who carry on the quiet work of healing. It's also a day to recognize the heavy emotional burden that doctors carry and the struggle many of them face in talking about mortality.

It takes a strong dose of understanding and a great deal of courage to shift the conversation from treatment to other options, especially when physicians sense that the patient isn't ready. In fact, according to the Institute of Medicine's recent "Dying in America" report, one out of four adults have given little or no thought to end-of-life wishes. Fewer have communicated their wishes in writing or through conversation. Doctors are picking up on our reluctance to admit that we're not going to live forever.

Ironically, other research shows that both consumers and physicians would like to talk about this sooner rather than later. In our comprehensive hospice-care survey of consumers and physicians across America, Crossroads Hospice found that one out of three doctors and patients say they would like to have the hospice conversation at the time of diagnosis or the start of treatment. Yet only one out of five physicians we surveyed actually start the conversation then.

Doctors are totally human. They are optimistic and relentless in their search for answers. Understandably, many doctors are reluctant to discuss hospice because they feel they are giving up on a patient. But hospice isn't about giving up hope. It's about creating hope-filled experiences for the patient at the end of life's journey.

Today is a day to thank Gawande and other physicians who are advocating earlier end-of-life conversations between doctors and patients. It's a day to thank doctors for their willingness to speak to patients with compassion and honesty about their options. And it's a day for all of us to remember to share our hopes, our fears, and, yes, our end-of-life wishes with those we love and who love us back.

Perry Farmer is the president and a cofounder of Crossroads Hospice, which has offices in Plymouth Meeting.