Planning death: Choices and dialogue at the end of life
By Mac McLean
Milton Buehner braved floodwaters in Houston to see an oncologist at one of the country’s leading cancer centers in May so he could learn more about his diagnosis of a rare form of renal cancer.
The 75-year-old Bend man also learned he had less than six months to live.
When Buehner reflects on his trip to the University of Texas’ M.D. Anderson Cancer Center, it’s not the weather, his diagnosis or the confusion of landing in a strange city under water that stands out.
It was a simple question his doctor asked after delivering the bad news. “He asked me: ‘What do you want to do now?’
“I wasn’t ready for that question,” Buehner said as he looked back on how his doctor invited him to decide how they’d proceed with his future medical care. Buehner never thought he’d have choices while facing such a grave diagnosis. He was accustomed to doctors telling him what to do rather than giving him options.
A century ago, doctors could tell their patients what was wrong but do little to stop it. Now they can often keep their patients alive for years regardless of injury, disease or future health prospects.
Extending life comes with a sacrifice, however, because the quality of those years often will be severely diminished.
Over the past 20 years, more patients and their family members have been seeking tools that give them the ability to limit their medical treatments, preserve their quality of life and take control of their fates.
Health care providers say baby boomers — a generation of more than 76.4 million Americans who were born between 1946 and 1964 — played a vital role in moving this change forward by bringing their desire for choices and self-determination, along with their legendary activist spirit, to the doctor’s office.
“They want dialogue instead of direction,” said Eric Alexander, president and chief executive officer of Bend’s Partners in Care Home Health and Hospice. “They’re looking for resources, and they’re willing to explore a lot of things the previous generation may never have thought about.”
One tool in this boomer-fueled push for choices is the use of Physician Orders for Life Sustaining Treatments (POLST), which lets people who have a life-limiting condition dictate what medical treatments their doctors can use to keep them alive.
Created in Oregon about 25 years ago, POLST and its related programs have since been adopted in more than 30 states and could become a national phenomenon if a bill seeking to create a Medicare-funded end-of-life planning service for terminally ill seniors moves forward in Congress this fall.
That push was also echoed by the fact that, in the wake of Brittany Maynard’s death nine months ago, elected officials in more than 20 states and the District of Columbia sponsored bills seeking to create a “death with dignity” or aid-in-dying statute like the one Oregon adopted in 1997. These laws give patients the ability to get a lethal dose of medication from a physician, which they can use to take their own lives if they choose not to die naturally through limited medical treatments or a hospice program.
Most of these bills have failed or stalled in their respective states’ legislative process. California’s Death with Dignity Statute, which passed a vote in the state Senate, was postponed until next year so its sponsors could rally more support for it in the state Assembly. But advocates for these programs take solace in the fact only five states considered a death-with-dignity or aid-in-dying statute the previous year.
They see the nearly fivefold increase in the number of proposed statutes between this year and last year as a sign their movement is nearing a tipping point and promise to continue their push during the next legislative session.
“The baby boomers are really changing how we look at death,” said Kat West, national political director for Compassion & Choices, a nonprofit seeking to improve end-of-life choices. “They’re fiercely independent, they’re used to making decisions by themselves and they want choices throughout the health care system.”
Generations and medicine
Baby boomers were born during an 18-year period of economic prosperity that stretched from the end of World War II to the mid-1960s. They are perhaps best known for a strong sense of entitlement, self-identity and an activist spirit that fueled the civil rights movement, Vietnam War protests and just about every other social change the country has experienced in the past 50 years, including the opportunity for more end-of-life choices.
While members of the Greatest Generation are best known for their service in World War II, they could also be known for coming of age when 26 to 27 percent of the country’s children died before reaching their fifth birthday, and the country’s leading causes of death were tuberculosis, pneumonia, influenza and abdominal conditions like diarrhea, enteritis and ulceration of the intestines.
But during the time the oldest baby boomers were coming of age, the medical community was benefiting from a series of breakthroughs that greatly increased what doctors could do to keep their patients alive, including:
- Discovery of penicillin and development of the first noninvasive “iron lung” respirators in the late 1920s.
- Invention of the first dialysis machine and use of plastic catheters as an alternative to metal needles in intravenous therapy in the mid-1940s.
- Development of the first alternating current defibrillator machine in the late 1950s.
- Widespread adoption of CPR as a technique keeping people alive after their hearts stop beating in the mid-1960s.
Dr. Susan Tolle, founder of the Oregon Health & Science University Center for Ethics in Health Care, said each of these advances had a profound effect on what caused people to die and how quickly they died. Quick killers such as infection, communicable diseases or complications during childbirth were replaced by slow-moving, chronic conditions such as heart disease, cerebrovascular disease and cancer, which could be treated through repeated visits to the emergency room, stays in the intensive care unit and an ongoing cycle of treatment, remission and relapse before they finally claimed their victims’ lives.
But these new life-sustaining technologies also come with a catch, said Dr. David Grube, a retired physician from Philomath, Oregon, who is the national medical director for Compassion & Choices. Grube said that while the advances can extend the length of a person’s life, they may have a negative impact on the quality of that person’s life and what he or she is capable of doing without assistance.
“Your survival is not: Have a heart attack and get back to normal. It’s: Have a heart attack and get back to 95 percent of where you were before,” Grube said. “Your quality of life (after going to the intensive care unit) is not what it was before. Your experience in life is not what it was before.”
Buehner thought about his quality of life and what he’d been able to accomplish when he considered his M.D. Anderson Cancer Center doctor’s question about what should happen next. He had raised a family, started a business and wanted to make sure both pieces of his legacy would be preserved and continue to function without his presence.
“I’ve been blessed more than anyone I can imagine,” Buehner said. “I’ve had a pretty good life. I’ve left something behind where I can say it was all worth it.”
He also thought about the legacy he wanted to leave behind when he died and chose to spend his final days in a hospice program as a way to face his fate rather than endure a series of complicated medical treatments that would lessen his quality of life and only delay the inevitable.
“I wanted to face death and show people that you can leave behind a legacy while you are living and you can leave behind a legacy when you’re dying,” said Buehner, who held a massive celebration of life in early June so he could say goodbye to his friends and family before he got too sick.
In mid-July, nearly two months after receiving his diagnosis, Buehner said he was doing better after some swelling subsided. The swelling had been caused by a gamma knife procedure at Eugene’s PeaceHealth Sacred Heart Medical Center to remove tumors just before his trip to Houston.
Recent studies have shown that between 10 and 30 percent of the population want their doctors to do whatever it takes to keep them or their loved ones alive, hoping for an unforeseen recovery. It’s a medical treatment decision Tolle said is perfectly valid and one the medical community is well equipped to honor. But she said a growing number of residents like Buehner would rather enjoy their final days than take measures that could infringe on their quality of life.
“Very few people say, ‘If I had a choice, I’d want to die in the hospital,’” she said. Many have lived through a situation where they watched a close friend or a loved one die “a technological death that involved a lot of machines.”
But for decades, many of these people were missing something they needed to make their wishes known and make sure their doctors followed through: a voice.
“The generations before the boomers were more honoring of what their doctors said and had fewer questions,” Tolle said. “They were more passive in their relationship with doctors; they had less of a sense of personal empowerment and autonomy than the new generation.”
Because they lacked a strong voice, Tolle said, it’s likely many members of the older generations decided not to step forward when doctors prescribed a series of advanced medical treatments they or their loved ones might not have wanted. That started to change when boomers entered the end-of-life discussion and started using their sense of identity, their activist nature and their willingness to question authority to honor their loved ones’ end-of-life wishes and, by extension, be sure their own wishes were followed.
“Not everyone is willing to stand up and say, ‘I want my medical treatments to be stopped,’” Tolle said, explaining that in many cases it can be difficult for people to confront their doctors when faced with death. But the boomers “will look a doctor in the eye and say, ‘Mom wouldn’t want this,’ because Mom’s talked to them and said, ‘I don’t want a death like Uncle Henry had (in the intensive care unit).’”
Tolle also sees the boomers’ push to control the end-of-life decision-making process as part of a much broader series of changes that generation has triggered in the field of medicine, starting with a demand that men be allowed in both the labor and delivery rooms during childbirth.
”It’s been interesting to watch,” she said. The boomers “believe, and, rightfully so, that health care decisions should be made with the family and with the values of the patient taking primacy. … Increasingly this movement with the boomers (and end-of-life care) is taking that process back; it’s saying we can plan things ahead of time and we can be more focused in this process when it comes to getting what we want.”
Tolle and other Oregon physicians developed the state’s POLST program to allow people diagnosed with a life-limiting condition to dictate how they eventually wanted to die.
The program’s current two-page form has sections where people can decide whether they’d like to be given CPR if their heart stops and whether they’d like to be given a feeding tube if they cannot eat. It also lets people specify whether they’d like their end-of-life care to be comfort measures that can be provided at home, limited additional interventions that can be provided in a hospital or full treatment measures that can be provided only in an intensive care unit.
“The form doesn’t have an agenda,” said Dr. Stephen Kornfeld, a semi-retired oncologist with St. Charles Health System who played a role in making sure the POLST program had an early success in Central Oregon. “It allows patients to have their say and speak their minds. … It’s a wonderful way to start the conversation (about someone’s wishes for end-of-life care).”
Kornfeld said these conversations are critical because the “default position in modern medicine” is for physicians to do everything they can to keep a patient alive unless he or she explicitly directs them to do otherwise. He said this default position means doctors may end up providing unwanted and, in some cases, unnecessary end-of-life care that infringes on their patient’s right of self-determination, simply because the person being treated did not make his or her wishes known. That treatment can also be costly for Medicare and other health insurance plans.
“Maybe the default position should be nobody gets aggressive care unless they want it,” he said, explaining physicians should play a more active role in encouraging their patients to think about and record their end-of-life wishes, as Buehner’s doctor in Houston did.
Eight weeks ago, Tolle held a news conference in Portland where she announced a new collaboration between OHSU and the California-based health care technology firm Vynca, which developed a fully electronic version of POLST. It allows doctors and their patients to fill out the program’s form on a computer and automatically store it in a six-year-old database that already includes more than 250,000 POLST records.
ePOLST, the formal name for this new option, is available to health care providers through Vynca’s website (demo.vynca.org). It comes complete with video clips that show what’s involved with each life-sustaining procedure discussed on the form and is designed to cut down on the 18 percent error rate that OHSU has seen in the past with its paper-based forms, which will still be available to patients who want them.
The June 15 announcement came less than a year after a study published in the Journal of the American Geriatrics Society found only 6.4 percent of the people who requested “comfort measures” on their POLST forms died in a hospital, and nine months after the Institute of Medicine cited the journal’s findings as one of the reasons every state in the union should adopt POLST or a similar program.
“(POLST has) really taken hold because it works so well,” said Tolle. “The whole combination of planning, empowerment and honoring (a patient’s wishes) works better in this state than any other part of the country.”
The program and its record of success may gain even more national attention in the coming months if Congress takes up a bill sponsored by Sens. Mark Warner, D-Va., and Johnny Isakson, R-Ga., that would extend Medicare to cover services that enable seriously ill people to discuss their end-of-life options and chart a course forward.
“It’s about making sure that your doctors, your hospital and your family know about what choices you have made about your care,” Warner wrote in a June 10 news release about his legislation, the Care Planning Act of 2015 (Senate Bill 1549). “If a patient prefers to explore every possible treatment option, that choice will be respected. And if an individual prefers a different approach after informed consultations with his or her health care team, family and others, those choices should be documented and honored, too.”
The legislation would:
- Develop a public information campaign that stresses the importance of end-of-life care planning.
- Create a website that teaches people about advance directives, portable treatment orders like POLST, palliative care services and hospice services.
- Help health care providers determine whether their patients have an end-of-life care directive in place and make sure that information stays with them.
- Set up a program to test whether people who filled out one of these forms received the care they wanted.
Nearly a month after Warner and Isakson announced their legislation, officials with the Centers for Medicare and Medicaid Services announced they had created a set of two billing codes doctors could use to signal whenever they had a 30-minute conversation with a patient and his or her loved one about filling out a basic advance directive form and other advance care planning services.
The agency also announced July 8 it was holding a special two-month comment period where it would seek input from the medical community and members of the general public about:
Whether doctors should be paid for having these advance care planning conversations with their patients and how much they should be paid.
Whether the Medicare program should offer doctors and physicians an incentive for having these conversations.
Whether the advance care planning conversations, if requested, should be included as part of each patient’s annual medical exam.
Warner called the proposed physician reimbursement plan an “important first step” in a news release his office sent out after CMS’ announcement. He said he still planned to move forward with his legislation because it covered several other topics — particularly patient education, special planning procedures for people with a serious or advanced illness and portability that would ensure people’s wishes were honored regardless of what state they were in — that he thought were missing from CMS’ proposal.
“Moving forward, the Care Planning Act provides a strong, bipartisan foundation for Congress as we consider how to further empower patients to make informed choices about their own care,” Warner said. “It’s not about limiting any patient’s choices, but expanding them by making sure that people have the opportunity to make their wishes known and can trust that they will be honored.”
His legislation does not, however, provide any federal money to death-with-dignity or aid-in-dying programs that let patients get a lethal dose of medications from their doctors. Funding for these services is explicitly prohibited by the Assisted Suicide Funding Restriction Act of 1997, a federal law Congress adopted in direct opposition to Oregon’s Death with Dignity Act. It was crafted soon after a November 1996 poll conducted by Wirthlin Worldwide found 87 percent of Americans were against any government money going toward these programs.
But Grube and West, with Compassion & Choices, said public attitudes regarding these initiatives changed dramatically following Maynard’s death in November 2014. They cited a pair of recent surveys that found 54 percent of doctors (Medscape, December 2014) and 74 percent of the population as a whole (Harris Polling, November 2014) support a terminally ill patient’s ability to end his or her own life.
“Death with Dignity is at a turning point,” West said.
She said Maynard’s story played a pivotal role for the aid-in-dying/death-with-dignity movement because millennials could see the 29-year-old brain cancer patient as being a friend or a sibling, and boomers could see her as being one of their children. It also involved a woman who moved from California to Oregon so she could increase the choices she had in her end-of-life planning, she said, noting this idea of having choices when a person dies is at the heart of the movement.
“Getting a life-ending prescription does not obligate a person to use it,” she said, citing a February report that found only 60.6 percent of the people who received one of these prescriptions from a physician used it to end their lives. “They have a choice. … They have a greater control over the circumstances of their death.”
This article was originally published in The Bulletin on Aug. 10,, 2015