Diane Carbo has spent countless hours considering how she would like to die.
She doesn't have a death wish or an obsession with life's most morbid aspects. Instead, the nurse and elder care advocate reflects on her end because she thinks it helps her live more fully.
"An end-of-life plan should always be in place," said Carbo, 62. "It's empowering to have the decision settled in your mind."
According to a 2014 survey from the Institute of Medicine. more than a quarter of adults have given little or no thought to their end-of-life wishes. This lack of planning and communication can lead to confusion and pain, Carbo noted, recalling chaotic trips to the doctor with her mother-in-law, whose doctors continued to perform expensive tests in the months before her death, although family members had shifted their focus from finding a cure to providing comfort.
"As a culture, we need to stop being so fearful about death and talk about it to become more aware of our (options)," she said.
Medicare officials seem to agree.
Under current Medicare regulations, end-of-life planning cannot be the sole purpose of a patient's visit. But a proposed plan would reimburse medical professionals for appointments dedicated to end-of-life care planning, allowing doctors to take the lead in starting conversations with patients and creating a healthier nationwide dialogue about death. If approved by Nov. 1, the plan would go into effect in 2016.
However, conversations with doctors are only the first step in the process of forming an end-of-life care plan, said Dr. Barry Kinzbrunner, executive vice president and chief medical officer at VITAS Healthcare. Family members, spiritual leaders and other counselors also have a role to play in the process.
"The hope is with these kinds of consultations that the doctor would start the conversation with patients and then they could go back to their family and continue the discussion," Kinzbrunner said.
The end-of-life landscape
An end-of-life care plan encompasses a variety of decisions, from deciding whether to sign a do-not-resuscitate order to designating a person to make medical decisions for you when you're no longer able to explain what dying comfortably means to you.
Carbo recently updated her plan with the help of the Five Wishes guide. which prompts people to outline how they hope to be treated in their final days, including how invasive life-saving efforts should be and when they'd want to be moved to hospice care.
"It allowed me to develop a comprehensive approach to the end of my life," she said.
Every end-of-life care plan is unique, but the central goal of each one is for doctors to understand "at what point in your illness they should take an approach directed at feeling better" rather than finding a cure, said Kinzbrunner, who co-authored "End-of-Life Care: A Practical Guide ."
Traditionally, discussions about what types of treatments should be employed near the end of life happen during regular check-ups, generally after a patient has already been diagnosed with a chronic or terminal illness.
That timeline puts more pressure on patients who are dealing with the stress of
their diagnosis, Kinzbrunner said. It's difficult to catch people up on the details and costs of care options when they're struggling to face a new reality.
The benefit of the Medicare's proposed plan is that it would provide a financial incentive for doctors to hold advanced care conversations earlier, he added.
"The best way to do an end-of-life care plan is to start it long before the end of life," he said. "When the physician has the ability to have these conversations earlier, it allows patients to be more comfortable with their choices."
Additionally, earlier conversations create opportunities for people to reflect on what "quality of life" means to them, as well as reach out to loved ones and other advisers, said Rev. Jan Holton, a professor of pastoral care, ordained elder in the United Methodist Church and former chaplain.
"A mom might (want to stop treatment) when she can no longer carry her child and walk around the house or play," she said. Someone else might request treatment be stopped when they can no longer recognize the family members who gather at his or her bedside.
By deciding things like this ahead of time, people can face death with agency instead of fear, Rev. Holton added.
Continuing the conversation
Although they support Medicare's proposed plan, both Rev. Holton and Kinzbrunner said doctor-initiated conversations need to be supplemented with reflections on end-of-life care at the community, household and individual levels.
In the divinity school course she teaches on death and dying, Rev. Holton has students as young as 23 write essays describing their end-of-life care plan.
"I want them to articulate the feelings behind the decisions they indicate, using scholarly materials that help them think and challenge their views about end of life," she said.
Students, like proactive patients, regularly draw on the wisdom of spiritual leaders, lawyers, psychologists and friends.
"It depends on the individual," Rev. Holton said. "If you have a family with whom you can talk about these things in a conversational way, you should bring the family in. But maybe you need to say, 'Here's what I decided.'"
After serving as a nurse for more than three decades, Carbo began formally helping others make end-of-life care plans through her website, Caregiver Relief. Her goal is to enable people to overcome the anxiety that often surrounds death.
People need to be their own best advocates, even as the health care system becomes more proactive about end-of-life care, Carbo added, recalling a recent conversation with one of her clients.
"I'm working with an 80-year-old right now who is going through chemo" and debating further treatment options, Carbo said. "She told me, 'No one is telling me about the likely effectiveness,' and I responded, 'But you're also not asking.'"
By working with a doctor, spiritual leader and family members to create an end-of-life care plan, people can bring peace to their final days, Carbo said.
Rather than focusing on dread and anxiety, "I tell people, 'Let's discuss how you can be in control of your life even up until the end,'" she said.