FRIDAY, April 2 (HealthDay News) — Death can be tough to talk about — especially if it’s your own death, or that of a loved one.
Yet end-of-life conversations are worth the discomfort, experts say. Armed with information from such talks, people can make sure that their wishes, or those of a friend or family member, are followed when it’s most crucial.
“It’s very important to have multiple people who know what you want and can stand up for you, and support each other,” said Dr. Gail Austin Cooney, a neurologist and palliative medicine specialist who’s president of the American Academy of Hospice and Palliative Medicine and medical director of the Hospice of Palm Beach County, Fla.
“As a society, we’re still very much in denial about death,” she said. “We still like to pretend it’s an optional event.”
What can be learned from such talks might be surprising. Beverly Bus found that out when her husband insisted on having an end-of-life conversation with her last April, just before he had open-heart surgery.
“He says he wants to be cremated, and that kind of surprised me,” said Bus, 49, of Wellington, Fla. “I would’ve expected different. I didn’t know that was what he wanted. He doesn’t want any part of a ceremony. He just wants to keep it simple.”
Cooney had a similar revelation. She said she’d assumed that her mother, who died in May, would not want to be in the hospital at the end. After all, Cooney herself had never liked being in a hospital.
But it turned out that her mother did want to be in the hospital. She felt safer with medical staff on hand to help her, Cooney recalled.
“I sort of wanted to impose my wishes on her, and, when I listened to her, I understood she was comfortable in the hospital,” Cooney said.
So how can families start an end-of-life conversation? It really depends on the family, Cooney noted.
“I have a casual kind of family, so this is the kind of topic we just bring up,” she said. “Other families that operate with a little more structure may need to set a time to sit down.”
Cooney found that bringing the topic up during a long car ride with a family member worked for her. “It’s forced time together, just the two of you,” she said.
Other times when you’re alone together can work as well. Beverly Bus spoke with her husband, Mike, while they were at the doctor’s office before his surgery.
“We saw someone come in who was really sick, and he just opened up his heart about what he wanted,” she said.
“I just wanted to be peaceful,” said Mike Bus, 66. “I wanted to pass away with a little bit of dignity, with less fear of the actual pain of dying. If it got to the point where I was hooked up to any machines, I wouldn’t want that.”
Families who need more structure might consider setting aside a period of time and gathering in a comfortable spot. “It’s easiest to bring it up as a group topic,” Cooney said.
And rather than put any one family member on the spot, she said it can be helpful to kick off the conversation by saying what you yourself would want. “I’ll tell you what I think if you tell me what you think,” Cooney said.
According to the Family Caregiver Alliance, some important topics to be discussed include:
- Who you want to make medical decisions and financial decisions for you if you become incapacitated. This can be two different people if you prefer: one looking out for your health, and the other managing your finances.
- Which medical treatments you would want and which you would not want. Be specific.
- Whether you want to be resuscitated if you stop breathing or if your heart stops.
- Whether you want to go to a hospice, a hospital or home if you are terminally ill.
- What your wishes are for burial.
The conversation, Cooney said, feeds into the development of two documents:
- An advance directive, also known as a “living will,” can spell out as many conditions as you want regarding end-of-life care. “If I’m in this situation, I want these things done or not done,” Cooney explained.
- A health-care proxy, which allows you to name someone to make medical decisions for you once you are incapacitated. “People consider this your most important document,” she said. “It’s almost impossible to put down on paper every scenario you might face.” But a trusted relative or friend who knows you intimately can serve as your proxy and stand up for you, she said.
Once the topics have been discussed, Cooney said, actual documents should be filled out.
Experts also suggest that end-of-life conversations happen regularly, not just once. Repeated conversations can help families become more familiar with their loved ones’ wishes. And, of course, people change: What someone told you they wanted five or 10 years ago might not be what they want now.
“This isn’t a have-it-once-and-put-it-up-on-a-shelf talk,” Cooney said. “This is a talk families should have repeatedly over time.”
More information
The National Hospital and Palliative Care Organization has more on end-of-life conversations.