In 2007, Gretchen Wirges’ father was diagnosed with cancer at age 62. Three weeks later, he was gone.
Her parents had not set up living wills, which spell out what actions should be taken for your medical care if you become incapacitated or unable to communicate your wishes directly. The living will could give power of attorney to relatives, friends or lawyers to act on your behalf.
The Wirges family scrambled to do the paperwork in that final difficult week while Gretchen Wirges’ father was drifting in and out of consciousness. Eventually the family called on a friend of a friend who could do the paperwork quickly and, because money was an issue, for free.
Yet “trying to get all of that done — it was so much harder because of all the emotions tied to it,” Wirges says today. “It was hard to hear my father discuss the fact that he was dying and having to talk about those things. If we had talked about it before, we could have been a little bit more matter-of-fact.”
Discussing end-of-life care is not easy. The Conversation Project, an organization that helps people talk about this issue, says more than 90 percent of people think it’s important to talk about the end-of-life-care wishes of their loved ones and themselves – but less than 30 percent of people have actually done so. The result? While 70 percent of people say they would prefer to die at home, 70 percent of people actually die in a hospital, nursing home, or long-term-care facility.
Start the Conversation
The discussion can be a lot easier if it’s done when a family is not in crisis mode. Families should try to approach the conversation just as straightforwardly as they approach any other financial consideration, such as getting life insurance or homeowner’s insurance. To spare your family the added difficulty the Wirges experienced, try to initiate a conversation in a casual, relaxed setting.
Approach the subject by talking about what happened when a friend, family member or even a celebrity died leaving unresolved issues that splintered a family, says Harvey Freishtat, a director of The Conversation Project. Explain that you don’t want that to happen to your family.
Another alternative: Lead the way. You might say you’ve been thinking about the issue and have designated a certain person as your decision-maker should you ever be incapacitated, advises Bud Hammes, director of medical humanities at Gunderson Health System in La Cross, Wisc. “Then say, ‘I’ve been worried about what would happen if something like this occurred to you, because we don’t have a plan. I don’t want to get into conflict, nor do I want it to be unclear or stressful. Would you be willing to talk with me about it?’”
If you face resistance, the loved one might instead respond to the notion that leaving such questions unanswered would put you in a tight spot, says Freishtat. He gives this example: “Mom, I need your help, because something could happen to you, and I don’t know what you would wish me to do.” If your loved one still resists, seek out an advanced care planning facilitator through your doctor or health system.
When you have the talk, Freishtat suggests that each person discuss what makes life worth living and what you can’t imagine living without. Some people might say, “As long as I can think straight, I’m ready to tolerate any medical care that could help me,” whereas others might say, “What matters to me is being able to recognize my kids.” That could progress to what would matter when you die, such as with loved ones at home without CPR, ventilators or intubation. The Conversation Project’s starter kit has more suggestions.
Once you’ve decided your philosophical stance on these issues, start making plans. For your living will or power of attorney, choose someone you trust to make good, complex decisions in stressful situations — even if it isn’t your spouse or other family member.
Get his or her permission to be given power of attorney; in some cases, if people are not informed in advance, they refuse the responsibility. If you do choose a family member, don’t assume he or she will know your wishes. “Research shows that family members are no better than strangers at predicting what an individual would want,” says Hammes. For that reason, discuss your wishes with the person you end up choosing.
While the goal is for people to have the kind of end-of-life experience they want, one other unforeseen benefit of getting these documents in order beforehand is lower costs: Most people don’t want extraordinary (and expensive) measures that prolong their life without improving its quality.
“If there’s no guidance, the medical system will respond with full care and do whatever they can to sustain the person’s life even if it’s not a life that would be defined as life by the patient – and that runs up a bill,” says Freishtat. “There are substantial differences in cost between care that is wanted and asked for, and the default.”
Whatever you decide, keep your documents updated as your life changes. “I’ve seen families tear apart over these decisions because one believes Mom should be treated and one believes Mom shouldn’t be treated. The strength of each point of view is so strong and the conflict so intense that the family connection is severed perhaps permanently,” says Hammes. Having the conversation not only helps ensure that you’ll die the kind of death you want, but that your family will be confident in its decisions and be able to support each other when the difficult time arises.
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