More than 90 percent of people think it’s important to talk about their end-of-life care. But less than 30 percent have actually discussed what they want, according to a recent survey by the California Health Care Foundation.
“I’ve had this conversation with so many families where a loved one is dying but that person is way too sick to talk about these things,” says Joe Rotella, chief medical officer with the American Academy of Hospice and Palliative Medicine. “So you have all the burdens that go with a loved one dying and then you try to guess how they would want to be treated.”
These conversations don’t have to be grim, but they’re necessary – no matter a person’s age or health. Here are three important guidelines to respectfully approach the topic with the people you love and with yourself.
1. Discuss mortality
It’s unlikely that many people wake up each day thinking it could be their last.
“It seems like human beings are hardwired to believe they’re immortal,” Rotella says. “We can’t imagine the world or life without us in it. At the same time, we know that our life will someday end. This paradox is really uncomfortable but also central to being human.”
This creates a stumbling block to discussing end-of-life issues. But experts in hospice care and palliative care – which focuses on improving quality of life and supporting emotional needs – say the truth is more complicated.
“We need to shift from hope to what is possible,” Rotella says. “We can’t restore you to the healthy person you were 10 years ago, but we can focus on things that we have some control over – concerns that are realistic and important now. False hope is not helpful. It doesn’t help anybody to live life to the fullest when it’s based on a lie.”
2. Reframe the conversation
For those who haven’t had end-of-life discussions, approaching the subject can feel risky.
“Sometimes there’s this elaborate dance where nobody – the doctor, patient or family or sometimes all three – thinks it’s their job to say something first,” Rotella says. “But when we face the fear and lean into it a little bit, we can lessen it by taking control and making sure people know what’s important to you.”
So, how can you raise this touchy topic with a loved one? Start with the basics:
Acknowledge that everyone is unique.
Discuss control and priorities. “People want to be themselves and die the way they live,” Rotella says. “That usually means being at home with the people they love.”
Maintain a different kind of hope, says J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Perhaps that’s religious or focuses on a topic like resolving a relationship,” he says.
Address pain. “People want to be pain-free,” Schumacher says. “If you are not, it’s hard to focus on anything else.”
Focus on goodbyes. “People like to be around family and friends and say their goodbyes in a meaningful way,” Schumacher says. “They don’t want to be left alone.”
- Consider the role of legacy, including the legacy of grief. “All of us worry about not wanting to add burdens to our loved ones or cause them to suffer,” Rotella says. “But that’s the paradox: We can’t prevent that because they love us, and losing us is going to be painful for them.”
3. Put your wishes in writing
Writing down your wishes using advance directives is best, but different states have different options and requirements. And while no plan can anticipate every situation, some helpful documents include:
- A will, which expresses your wishes regarding your finances and property.
A living will, which offers directions for life-sustaining treatment or comfort care.
Durable power of attorney for health care, which is a trusted person to oversee your medical care if you can’t. “At a minimum, if you were only going to have one advance directive, designate a person to be your decision maker for health care if you are unable to speak for yourself,” Rotella says.
Taking time to talk now can ease the stress and fear when you have to make a decision.
Henry Ford Advance Care Planning: planning ahead can make the difficult conversation easier for everyone
Jim Kraft is the chaplain at Henry Ford Hospital West Bloomfield, and he initiated the Henry Ford Advance Care Planning program.
“Most people don’t think about end-of-life decisions until it’s too late,” Kraft says. “The fact is many people spend their last days in ways they would never choose. An Advance Directive Form is a way for people to express their end-of-life wishes before it’s too late. This relieves their families and loved ones from making tough decisions for them, when emotions are at their highest. We encourage patients and people close to them to have a conversation about their end-of-life wishes. We recommend everyone age 55 or older have an open, honest discussion with their family and loved ones. It’s not as much about how they want to die, but how they want to live.”
Henry Ford Health System is one of 10 health care organizations nationwide serving as pioneer sponsors of The Conversation Project. The goal of the project is to break the silence and have everyone’s end-of-life wishes expressed and respected.
Also see the Stanford Letter Project.