You can help the person you care for, and yourself, by starting a conversation about his or her wishes regarding end-of-life care.
At first it may feel awkward to speak about death and dying.
It’s even more uncomfortable, though, to have to make end-of-life decisions for a loved one without knowing their wishes.
When to have the talk
Family members who have talked about preferences are spared the guilt and anxiety of trying to make difficult life-support decisions in a vacuum.
If you are a likely decision maker, you have a strong reason to bring up the subject. Optimally, this will lead to writing down your loved one’s wishes in a document called an “advance directive.”
Most Americans say they are in favor of advance directives. Still, only 37% of us actually write one. The biggest barrier is not getting around to it. In an ideal world, every adult would have an advance directive, no matter his or her age.
It always seems “too early” to have the talk, until it’s “too late.” Sudden accidents or illnesses occur all too often, even with the young.
Having the conversation and getting documents in place becomes more urgent in the case of
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- a diagnosis of dementia
- a hospitalization
- a scheduled surgery
- a diagnosis of a life-threatening illness
Bringing up the topic is usually the hardest part. Once everyone gets past the initial discomfort, many families are relieved to have the issues out in the open. And it may not be a single discussion. Sometimes it’s better to visit the issues in shorter talks.
Here are some prompts that might help you gently bring up the subject:
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- A friend’s experience. “My friend’s father just died. It sounds like it was really hard on the family, mostly because they didn’t know what he wanted. Everyone had a different idea of what should be done. It was terrible. It occurs to me, I don’t really know what you would like if we were in a similar situation. What are your preferences?”
- Creating your own advance directive. “I was putting together an advance directive so my doctor would know what I want in terms of life support. What do you think about CPR? Ventilators (breathing machines)?”
- Being a good son/daughter. “I have something on my mind I’ve been wanting to ask you, but it’s kind of uncomfortable to talk about. Still, I feel like we should. I wouldn’t be a good son/daughter if I didn’t find out about your wishes in terms of life support. You might not be able to speak for yourself. I’d like to know now what your wishes are so we can be sure they are followed.”
- A news story. Avail yourself of something that comes up in the news, either about a problem with a lack of directive, or the advantages that were realized because there was a directive in place. “Neither Richard Nixon nor Jackie Kennedy was on life support when they died. I wonder if they had an advance directive?”
Responding to resistance
Here are some common ways people tend to deflect when someone brings up the subject of advance directives and end-of-life decisions:
“It’ll be okay. I’ll beat this thing. We don’t need to discuss life support.”
Denial is one of many ways we cope with problems that seem overwhelming. Although it is frustrating for family members, it can be a very important strategy for the person who is facing a serious illness. But you still need to know their wishes. Try framing your need for a conversation in the context of “just in case.” In a gesture of unity, you could also decide to make an advance directive yourself and suggest that the two of you do it together. Everyone needs an advance directive.
“It’s all in God’s hands.”
Those who are religious may believe the moment of death is out of our control. Whether or not you agree with these beliefs, you can affirm your loved one’s conviction and still point out that “a [Higher Power] has given us the responsibility to determine how we live up until death.” Then you can share your need to know more about your loved one’s wishes.
“It’s too painful to talk about. Besides, talking about it is bad luck. It will only make it happen.”
Rather than challenge this belief, focus instead on the pain it will cause you if you don’t have the discussion. Certainly, acknowledge your loved one’s discomfort with the subject. Then try sharing that you are distressed at the prospect of the guilt you will feel, wondering if you made “the wrong decision.” Introduce the subject now, and then suggest you two set up a time to come back to it in a few days. Planting the seed and letting it rest can make it easier to address later, after some time getting used to it.
“There’s no need to talk. You know me. I don’t want any heroics.”
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Although this is a straightforward response, it’s not always that simple. You could guess they don’t want CPR or a breathing machine (ventilator). But what about antibiotics if they are frail and get pneumonia? Ask to go through the documents together just to be sure you have it right. Our state’s advance directive will help you guide the conversation so you can have a more nuanced understanding of your loved one’s wishes. You might also explore a document called “Five Wishes” for ideas of good questions to ask.
When family members disagree
The person who is ill may have very clear thoughts about what he or she wants in terms of life support. Family members may not agree. If there is no paperwork, it’s hard for medical staff to know what to do. They are legally and ethically bound to follow the patient’s wishes. If all the paperwork is complete and available, then the instructions are clear.
Keep an original signed version at your loved one’s home. Several signed copies of the advance directive should be stored in different places.
- With the named decision maker(s)
- With the doctor, ideally in an electronic medical record
- At the hospital if there is a planned admission
Beware: the attorney’s office or a bank safe deposit box are likely to be closed on the weekend when you might need it.
Even though the named decision maker gets the last say, it is better for everyone if there is consensus. If family members cannot agree, ask for help from a social worker, chaplain, or counselor. (If you are in a medical facility, they will have one of these professionals available. If your loved one is receiving hospice care, a social worker or chaplain can come to the house.)
A family meeting facilitated by a knowledgeable professional can help everyone voice their concerns. It’s obviously an emotional time. People need to feel heard. Ultimately, by the end of the meeting, most people come around to putting the patient first, focusing on his or her beliefs and wishes.
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