Unexpressed wishes

As an oncologist helping patients fight cancer, Dr. David Potter is keenly aware that not every battle will be won. Some people are just too ill, or unresponsive to medications and radiation, to continue treatments geared for their long-term survival.

“Once things go [downhill], they go really fast,” Potter said, “so it always seems like you’re winning the past war.”

He explained that “the default” for many physicians is “aggressive treatment"—though that is not the only option. “Doctors want to do what the patient wants,” Potter said, but many terminally ill patients have not conveyed their wishes and then are no longer able to do so.

That’s why end-of-life plans, to whatever degree a patient feels comfortable making them, are so significant—and, yet, relatively rare.

The California HealthCare Foundation released a study last month that found around 80 percent of Californians say, if seriously ill, they would want to talk with their doctors about end-of-life planning, but only 10 percent have actually done so. Moreover, less than 25 percent have actually put their desires in writing, even though 82 percent acknowledged the importance of documentation.

“With end-of-life treatment, there is a clear gap between wishes and actions,” Dr. Mark D. Smith, president of the California HealthCare Foundation, said in a news release announcing the survey results. “People consistently stress they want to die comfortably and without pain. If so, the single most important thing they can do is to talk to their loved ones and physicians, and put their wishes in writing, something most Californians aren’t doing.”

Why is there such a “clear gap"? Potter, a longtime Chico physician, sees a variety of factors conspiring against end-of-life discussions.

“First,” he said, “with the way the health-care system is organized, people are rushed, so they don’t take the time to do it.” A 15-minute appointment affords barely enough time to scratch the surface, let alone have a comprehensive conversation about complex, serious issues.

“Second, each side may be waiting for the other side to bring it up,” he continued. “There’s discomfort on both sides.” When it comes to stark matters such as death, there’s a tendency to think, If we don’t talk about it, it won’t happen.

“Third,” Potter said, “most doctors aren’t trained in a formal way to do it, so they may not want to open up a can of worms they don’t want to get into.

“Because of my specialty, I probably do this more than many other doctors. On the other hand, I do it within a solid framework,” he explained, because terminal cancers follow a more predictable, long-term trajectory when compared to other illnesses and conditions. “Even then, I find it hard, and I’ve been doing this 30 years. It’s always emotionally challenging.”

Potter can draw on experience when consulting with terminally ill patients—not only from his decades as an oncologist, but also as a son-in-law. In helping his wife and her parents, he saw first-hand the difference advanced planning can make.

“If you don’t plan ahead, you fall behind,” Potter said.

Not surprisingly, the queries he hears tend to be medical—but not always. People need to consider logistical and legal concerns as well.

Potter frequently collaborates with Enloe Hospice charge nurse Anna Marinelli. Marinelli says she hears “a variety of questions in addition to medical questions. It’s so varied; that’s what’s wonderful about working as a team.”

Some end-of-life planning questions relate to the actual end of a person’s life: whether to hold a funeral, and burial versus cremation. Other patients are more concerned about “do not resuscitate” orders and assigning “medical power of attorney” rights to a loved one. Other issues discussed include accommodating decreased mobility as well as opportunities for bereavement counseling for families and survivors.

With the wide range of patients she sees, Marinelli said, planning goes “from one end of the spectrum to the other, and we respect the decisions they want to make—or don’t want to make.”

Where to begin? Talking to a physician is a good first step.

“I think if it’s something that’s meaningful to you,” Potter said, “it’s definitely something to bring up with your doctor and see where it goes.”

Marinelli advised that some physicians are less familiar with end-of-life care and hospice than others.

“Call the hospice you feel comfortable with,” she said, noting that the staff can facilitate end-of-life planning even before a patient enrolls in hospice. “I do get calls from the community, and we’re all more than happy to help.”