Speak for Yourself

By the time Michelle Soto was diagnosed with uterine cancer at age 39, her mother, friends and other relatives were already cancer survivors. She assumed it was her turn to join their ranks—and for the first two years after treatment, she appeared to be cancer free. “We thought she was going to be a survivor, too,” says her sister Cindy Azghani.

Then the cancer returned without warning and never loosened its grip. In 2008, Soto died at age 44 in her parents’ home in Garland, Texas. As stressful as those final months were, her family found some peace knowing that Soto’s last weeks played out according to her wishes—no heroic rescue efforts, no treatment that might have bought a little more time at great cost. Had she not written down what she wanted at the end, says her mother, Olivia Soto, “It would have been very hard. I never would have known if I was doing the right thing.”

In January, the Obama administration rescinded a Medicare regulation that would have allowed doctors to be reimbursed for voluntary advance care planning. “There is something perverse about a system that will allow a physician to prescribe a drug with relatively little benefit but will not pay for an hour of a physician’s time to discuss how to make the end of a patient’s life better and more dignified,” says George W. Sledge Jr., MD, president of ASCO and an Indiana University professor and oncologist.

To emphasize the value of end-of-life planning and to offer guidance in doing so, ASCO recently released a policy statement for physicians and a downloadable booklet for patients (cancer.net/patient/coping/advanced+cancer+care+planning). The move was designed to make advance care planning easier for patients and to encourage oncologists to incorporate a conversation about the end of life into routine treatment. “I think every honest physician will tell you this is the hardest part of their job, bar none,” Sledge says. “Physicians form relationships with patients. I treat a woman with breast cancer. I want to do everything humanly possible to prolong the life of that patient. Having to sit down and tell her she’s likely to die in the not-too-distant future is a difficult thing.”

And yet, preparing for an inevitable death may actually postpone it. This past summer, in The New England Journal of Medicine, an ASCO-funded study found that patients with metastatic non-small cell lung cancer who had a discussion about end-of-life care at the time of diagnosis lived longer than those who did not. The study followed 151 patients who were randomly assigned to receive only the standard course of care or standard care along with early palliative care—treatment that focuses on pain, symptom management and mental well-being. At the end of the study, patients who had received palliative care reported a better quality of life and lived a median of almost three months longer, despite the fact that they were less likely to receive aggressive end-of-life treatment. “It’s possible that good pain control allows you to live longer,” Sledge says. The same may be said about better nutrition, better mobility and the absence of toxic side effects from powerful chemotherapy rescue attempts.

We all should begin to let our families know our wishes as soon as we’re adults.

The undercurrent of the ASCO policy is the recognition that many patients, along with family members, feel awkward broaching a conversation about death. Much about the culture of cancer treatment is focused on staying positive, so bringing up a plan for failure is almost seen as a betrayal of faith, Allegre says. “Families will say, ‘We’ll talk about that when we need to, but if we talk about it now, they will think we’re giving up. I want to stay positive for Mom.’” Many patients are afraid of disappointing even their doctors if they mention the possibility of care being futile, Sledge says. “Even when patients know they are not doing well,” he says, “there is almost a conspiracy of silence.”

The truth is advance care planning makes sense for everyone. You never know when some kind of accident will threaten your life.

The paperwork is meant to be easy, but sometimes even motivated patients find it daunting. In 2005, in the midst of news coverage about withdrawing a feeding tube from Terri Schiavo—the brain-damaged Florida woman who became the center of a right-to-die debate—the National Hospice and Palliative Care Organization experienced a flood of traffic on its website. “We distributed close to 100,000 advance directives,” says Kathy Brandt, the organization’s senior vice president of education and engagement. Yet a Pew Research Center survey in 2006 found that only about 30 percent of adults had a living will. “More people knew about it, but the percentage of folks who completed it didn’t change at all. It could be it just got put off. They’ll say, ‘I’ve got the form and I’ll get to it,’ and they don’t. They lose that impetus.”

People can also find the forms intimidating. In January, an analysis of several legal documents in the Annals of Internal Medicine reported that advance directive forms available online suffered from poor readability and other barriers that prevented follow-through. Noting that about 40 percent of the U.S. population reads at or below an eighth-grade level, the researchers found that most advance directive forms are written at levels above high school and contain ambiguous language.

Allegre says the best time for people to discuss their end-of-life care isn’t when they’re sick but when they’re well. “We all should begin to let our families know our wishes as soon as we’re adults. I’ve been talking about it since 1973,” Allegre says. When her life reaches an end, she has no doubt that her feelings about vigorous treatment and artificial means of life support will be clear.

Not only does advance care planning ensure that your wishes will be followed, but it can also—as it did with Michelle Soto’s family—relieve some burden from already stricken family members. Without written guidance, families may struggle with trying to predict what their loved one would want, or worse, disagreeing about it during emotionally laden moments. A review of studies published in March in the Annals of Internal Medicine found that people forced to make medical decisions on behalf of someone else endured considerable negative emotions, such as stress about making a decision, guilt about the decision made and doubt about whether the decision was right. “They were suffering, sometimes for years after,” Allegre says. “What made it less stressful was when they had some idea what the patient wanted.”

Despite surveys that indicate an overwhelming majority of Americans agree that it’s a good idea to plan for the end of life, few people actually follow through. An analysis of 5,500 patient records by the American Society of Clinical Oncology (ASCO) found that fewer than 40 percent of patients with advanced cancer reported having had a “candid discussion about prognosis” with their physician. Of the 45 percent of patients who were enrolled in hospice care before their deaths, approximately one-third entered hospice only in the last week of life. Some experts worry that those numbers will remain low as end-of-life care gets marginalized from medical care reimbursement.

Most people put off planning for death until it seems imminent. And yet the time to think about the end of life is before the moment comes. No one can know how and when death will occur, but everyone can make sure their wishes are known under most circumstances. Medical experts worry that too many people think of advance care planning as “pulling the plug on Grandma,” and too few think about the end of life until the choices are no longer theirs.

"It's really about keeping you in control of what happens,” says Ann Allegre, MD, medical director at Kansas City Hospice and Palliative Care. “If we don’t know what you want, we’re going to do everything, even if we don’t think it’s going to benefit you.” Many treatments in the last days and weeks of cancer do not so much prolong life, she says, as prolong the process of dying.

To break that conspiracy, patients must first understand what advance care planning is—and is not. It is not ceding the management of treatment (in fact, it can mean greater control because a person’s wishes will be recorded if he or she can’t communicate them). It is not a certification that a patient is on the brink of death. It is not a declaration that treatment will end—palliative care is often given along with standard care. It is, however, guidance for when palliative care will transition into hospice care, which focuses on maintaining patient comfort once active treatment is withdrawn.

There’s no right or wrong way to start the conversation, and it shouldn’t be envisioned as just one big talk, says Elizabeth Sjoberg, RN, JD, who is associate general counsel of the Texas Hospital Association. “It’s a process,” she says. “The hardest part is deciding to do it.” Once that decision is made, patients and their families can turn to several places for help: hospital social workers, hospice organizations, even organizations like the Texas Hospital Association offer advance directives forms online.

The most common documents are called advance directives. A directive to physicians (called a living will) is a legal document that records your wishes about types of treatment and life-sustaining measures. A medical power of attorney designates someone to make medical decisions on your behalf. Exact laws vary from state to state, but you can fill out and usually process the forms without an attorney. (Although it wouldn’t be hard to find one. Unlike doctors, lawyers can bill for their time assisting with end-of-life medical planning.) At the time of admission, many hospitals now ask for a directive during the time of hospitalization if an acute deterioration due to cancer were to occur that would not be easily reversible.

To keep motivated, family members can turn to each other. When Michon Lartigue’s father was diagnosed with multiple myeloma in 2008, she knew she wanted him to plan for end-of-life care. “Everybody knows at some point we’re all going to die,” says Lartigue, who lives in Colorado Springs. “You put all of that in a box so you can move forward with your day-to-day life, but when a loved one gets a diagnosis, you can’t put it in a box.”

About a year after her father received his diagnosis, she called a family meeting and suggested they all plan for their end-of-life care together. “I couched it as, ‘Let’s prepare for everybody,’” she says. “And the truth is advance care planning makes sense for everyone. You never know when some kind of accident will threaten your life.”

She also says over the course of conversations, she had to be mindful that for her dad, the possibility of an early death was not theoretical. “When there is a life-threatening illness in a family, there’s not a neat way to handle it. I’m very grateful and relieved that we have this planning, but it is hard to come to terms with the fact that he has this illness.”

She expects—she hopes—that he will live a long time. But when the end comes, she says, “as difficult as it will be, we will have some pieces in place that will make it easier. I know what he wants. I’m not guessing.”