It was a death Dr. David Grube will never forget. One weekend more than 20 years ago, a neighbor’s son appeared at his front door near Corvallis, Ore., asking for help with his father, who was terminally ill with bone cancer. Grube rushed over to find a horrific scene: Unable to cope any longer, the pain-wracked neighbor had shot himself.
Grube, a soft-spoken retiree, still remembers the vow he made that day: “I will never allow any of my patients to get to that point.”
Today, Grube answers calls from doctors around the country, including California, seeking advice on end-of-life options for their patients. They’re spurred by California’s new aid-in-dying law as well as federal policies that encourage doctors to discuss options that include hospice, palliative care, pain management and, in states where it’s legal, prescription medications to hasten death.
Grube is one of two physicians offering free counseling on Doc2Doc, a toll-free line sponsored by Compassion & Choices, a Denver-based nonprofit group that supports end-of-life planning.
“Essentially, dying is not easy anymore. It’s very complicated with all the technology” and medical interventions, said Grube, who believes patients and physicians need help in sorting out their best options.
Nationally, impetus is growing for patients and doctors to embrace end-of-life conversations. Starting Jan. 1, Medicare will reimburse doctors who spend time with patients discussing their end-of-life care. And in California, a new era is unfolding with this year’s passage of SB 128, which will allow terminally ill patients, under a strict protocol of steps, to request prescription medication to hasten their death. The law’s actual date of enactment is uncertain because it can’t go into effect until 90 days after the Legislature’s special session ends, which could last well into 2016.
Earlier this month, Compassion & Choices announced a bilingual campaign to educate California physicians and patients about the new law, which was championed by Bay Area resident Brittany Maynard, a young brain cancer patient who moved to Oregon to end her life with lethal prescription medication.
About 89 percent of Americans say doctors should discuss end-of-life care issues with their patients, but few – about 17 percent – say they’ve had that conversation, according to a September 2015 survey by the Kaiser Family Foundation.
It’s not always easy for doctors to broach the topic. “The end-of-life discussion is partly avoided by physicians because it’s an acknowledgment of the limits of medicine,” said Ben Rich, UC Davis professor emeritus of internal medicine and bioethics. “There’s an understandable reluctance to have that kind of conversation and defer it until you don’t have any other options. It’s much easier to talk about the things you can do” such as further treatments and interventions.
Rich said UC Davis and other medical schools are doing more to teach future doctors about how to talk with patients, including breaking bad news of a serious diagnosis or failure of therapies to achieve hoped-for results. “Physicians are learning that this is part of their responsibility to their patients, regardless of how difficult it may be.”
Despite the contentious battle to pass California’s aid-in-dying legislation, it’s still only one option for terminally ill patients.
Even without it, medical leaders and policymakers nationwide are focusing on the need to discuss a quality, dignified end to life.
“Dying in America,” a 2014 study by the Institute of Medicine of the National Academy of Sciences in Washington, D.C., concludes that “a person-centered, family-oriented approach that honors individual preferences ... should be a national priority.”
“There’s a stigma about talking about end-of-life care,” said Dr. Laura Petrillo, a palliative care physician in San Francisco who opposed California’s aid-in-dying legislation. “The addition of this option doesn’t solve our problems with end-of-life care in California. It would be a shame if patients were to use this because of a lack of access to other options,” such as hospice or palliative relief of pain.
Regardless of what options a patient chooses, it should be their values and preferences that are honored, she said. “They face an unknown that is reasonably terrifying. ... A lot of people do find relief in having those conversations,” Petrillo said.
Initiating the talk
There’s no lack of tools to prompt physicians, patients and their families to have end-of-life conversations.
One is the Conversation Project, a website co-founded in 2010 by author and former Boston Globe columnist Ellen Goodman after an unsettling experience with her mother’s death. On the site, Goodman describes being torn up emotionally by “cascading decisions for which I was wholly unprepared,” from pain management to bone marrow biopsies for her mother.
“The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death,” Goodman writes. “I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it.”
The website’s questionnaire lets people sort out their feelings with questions such as, “What matters to me at the end of life is…(being able to recognize my children; being in the hospital with excellent nursing care; being able to say goodbye to the ones I love.)” It then helps them determine where, when and how to have those discussions with family members.
Another tool is “Go Wish” playing cards, printed with conversation starters to help people discuss their end-of-life goals. Whether played in groups or solitaire, the cards are ranked according to their personal importance, such as “have a nurse I feel comfortable with” or “take care of unfinished business with family and friends.” The decks of cards are sold by Coda Alliance, a Silicon Valley group that encourages seniors, their families and health care professionals to have end-of-life discussions.
Some of those wishes can be spelled out in an advance health care directives, the documents that include people’s preferences on life-saving treatments and those designated to make health care decisions in case of incapacitation. Those documents are recommended for all adults over age 18.
Too many people, however, designate someone to act on their behalf, but never discuss their end-of-life preferences with that person, said UC Davis’ Rich. In a medical crisis, that lack of information can lead to traumatizing choices for family members.
“You want to elicit a patient’s system of values and priorities about death and dying before they’re facing what could be the end of their life,” Rich said. But, he noted, those priorities could be revisited when or if a person becomes terminally ill.
With family members, some suggest choosing a quiet time during the holidays when family has gathered to broach the topic. Among the issues to be discussed: How much time would you want to spend on a ventilator? Do you want do-not-resuscitate orders in case of emergencies? Would you participate in clinical trials and experimental treatments? Are there family or personal milestones you want to reach before giving up treatment?
Elizabeth Wallner, a Sacramento single mom battling stage IV colon cancer that has spread to her liver and lungs, has had the conversation with her family. An advocate of California’s aid-in-dying legislation, Wallner is one of three plaintiffs who filed suit against the state in May, asking that physicians be allowed to issue legal, lethal prescriptions for the terminally ill.
Wallner, 52, said she wants a prescription to spare her elderly parents and her 20-year-old son the agony of seeing her in pain once her cancer progresses. Although currently feeling well, Wallner assumes, given the cancer in her lung and liver, that she will die either by painfully “drowning” as her lungs fill with fluid or from toxin buildup as her liver shuts down. Neither of those choices “seems very alluring,” said Wallner, dryly. “Beyond everything else, I don’t want that to be my son’s last memory of me.”
Once California’s plan becomes active, it will join four other states – Oregon, Washington, Montana and Vermont – that offer terminally ill adults the option of self-administering a lethal dose. In each state, the requirements are strict. Californians, for instance, must make three voluntary requests: two verbally 15 days apart and one written, which must be signed by two separate physicians. Individuals must be mentally competent and capable of pouring and swallowing the medication, typically a barbituate such as seconal. Physicians and religious-affiliated health care systems are not required to write prescriptions to hasten dying.
As California prepares to add another option to end-of-life care, even those who work daily in palliative care say these conversations are never easy.
“I’m grateful we’re starting to have these conversations,” said Dr. Shelly Garone, Kaiser Permanente assistant physician in chief in Sacramento and Roseville, who specializes in palliative care. “We need to help normalize that death happens and it doesn’t have to be scary.”
Discussing end-of-life options can be unsettling. Here are some starting points:
TheConversationProject.org: Its online questionnaire helps define your end-of-life preferences, then shows how to initiate conversations with loved ones and physicians. Translations are in French, Hebrew, Korean, Mandarin, Russian, Spanish and Vietnamese.
“Go Wish” cards: Aimed at helping people talk with family and caregivers and rank end-of-life priorities, the playing cards are sold ($24 for a two-pack) by CodaAlliance.org.
CompassionandChoices.org: A Denver-based nonprofit that supports end-of-life planning, its “Good to Go” tools include advance health care directives and details on hospice, palliative and other options. It also offers end-of-life phone consultations at 800-247-7421. California physicians, pharmacists and patients who want details on the state’s new aid-in-dying law can call 800-893-4548.