As is often the case with gallbladder cancer, Tim Colvin didn’t learn of his disease until its late stage with little chance of survival.
He died five months after his diagnosis at age 48. In the six years since his death, Darcy Thiel, his wife, has devoted much of her life to chronicling their experience.
A key message she shares with others is the need to overcome the fear of talking about difficult end-of-life wishes.
“Advance care planning was an eye-opener," said Thiel, a licensed mental health counselor in Buffalo. "We weren’t strangers to death. But we had to become educated about making those kinds of medical decisions.”
Thiel participates in an initiative in Western New York that encourages such discussions. The campaign has enlisted more than 30 groups of hospital officials, doctors, health insurers and others to coordinate their individual efforts, figure out what else they should be doing, and get a strong message out to the community.
Most people approach the end of life without instructions to guide family members and doctors about the care they want. As a result, many patients die, often in the hospital, after receiving unwanted tests, treatments and procedures.
Advance care planning involves making decisions with loved ones about care at the end of life, such as hospitalization, hospice or life-sustaining treatments like intubation, tube feeding and cardiopulmonary resuscitation.
“These conversations need to happen in families and among loved ones, outside the medical realm,” said John D. Craik, executive director of the P2 Collaborative of Western New York, a group that coordinates regional health initiatives.
Advance care planning attempts to tackle some of life's most difficult questions. Do patients want every possible medical intervention as they approach death, even if it promises little or no benefit, or causes pain? Do they prefer to die at home or in hospital? Do they want loved ones to know their wishes if they can't speak for themselves?
“It's not about denying care. It's about people having their wishes honored at the end of their lives," Craik said.
The P2 Collaborative recently received a $35,475 grant from the Health Foundation for Western & Central New York to lead the project, with the research and planning phase over the next nine months in collaboration with Buffalo State College’s Institute for Community Health Promotion.
The grant may look modest but the goal isn't. The campaign aspires to emulate Honoring Choices in Minnesota and Respecting Choices in Wisconsin, programs considered the gold-standard for educating patients and training physicians about advanced care planning, as well as reaching out to community groups and faith-based organizations.
Craik said an assortment of efforts in Western New York encourage advanced care planning, yet they are largely separate and lack a coordinated strategy that identifies missing pieces and maximizes their effect.
“Part of the challenge for us is to gauge who is doing what out there, share best practices, determine what to change and measure success,” he said.
Even though advanced care planning improves communication over medical decision-making and can reduce suffering at the end of life, the use of advance care plans remains low. A survey of nearly 8,000 Americans published in 2013 found that only 26 percent had completed an advance directive, yet a significant majority of respondents expressed concern about their comfort and dignity prior to death.
Medicare now pays physicians $86 for counseling patients about end-of-life planning. However, it remains a difficult discussion to start. Nearly all doctors who see Medicare patients consider advance care planning conversations important, according to a national survey released earlier this year. But nearly half reported that they frequently or sometimes feel unsure of what to say.
The survey of 736 physicians -- which was sponsored by the John A. Hartford, the California Health Care and Cambia Health foundations -- also found that fewer than one-third of the doctors reported having any training on talking with patients and their families about end-of-life care.
A taboo topic
Advance directives put the instructions in writing in case patients can’t speak for themselves. The documents include living wills, appointment of health care proxies, and do-not-resuscitate orders.
“As doctors, we do things to patients at the end of life that we don’t really want to do. Often, no one has asked the patients what they want, and they are unable to tell us. That’s especially true in the emergency room,” said Dr. Anthony J. Billittier IV, chief medical officer of Millennium Collaborative Care and an emergency room physician.
In addition to an emotional toll, the lack of communication poses huge cost and quality problems for the health care system, he said.
The fundamental problem is a societal one – a reluctance to accept the inevitability of death, Billittier said.
“Both patients and clinicians are uncomfortable with talking about death. It’s a taboo,” he said. “It’s not something easily done. We need to fix the cultural issue.”
To Thiel, who recalled how her husband's illness blindsided the relatively young couple, the conversation about end-of-life medical wishes isn't one people should reserve for older age.
"Things can turn on a dime," she said. "You never know when a crisis will occur."