According to The Conversation Project, 92% of Americans think it’s important to discuss their wishes for end-of-life care, but only 32% have done it. As you consider the unknowns about your future health and decisions that might need to be made on your behalf, it’s essential that you reflect on your values and how they relate to your preferences for treatment. This reflection prepares you to talk about your priorities with those on your healthcare team and to write them down in an advance healthcare directive.
Ideally, you will also choose a healthcare decision maker (also called your “healthcare agent”) and talk about your thoughts with this person. Don’t force yourself to complete this conversation in one sitting. That could be overwhelming. And keep in mind that over the years, as your health and life circumstances change, you will want to update your advance directive and your healthcare decision maker through new discussions. Talking about your values may even draw you closer to the person you have chosen to make decisions on your behalf.
The end goal of these conversations is to provide guidance to anyone who needs to make decisions when you are unable to do so. But the conversations are also much bigger than that.
It’s about living While life support issues are a part of the discussion, it’s not just about death and dying. In some ways, this is a great time to think about what is important to you about living and how you might make adjustments so your life is more in alignment with your priorities.
These conversations are not just for people with a serious illness. Every adult needs to make their wishes known—before it’s too late. You never know. Realistically, something could happen even today that might render you unable to speak for yourself in a health crisis.
Before engaging in conversation about your healthcare wishes, do some personal reflection about what matters most to you. What brings joy to your days? Meaning to your life? For instance, you might wish to consider the following:
Your “bucket list.” With whatever time you have left, be it weeks, months, or years, is there anything you really hope to do, see, or say before your time is done?
What makes a good day good? Your answers will provide clues for yourself and others concerning what to prioritize in your daily life. That is, if others had to be in charge of your life, what should they focus on providing for you?
What makes a bad day bad? Are there things that are important to you to avoid or control? For instance, nausea from chemotherapy. Or certain characteristics in care providers (perfume, loud voice, etc.). Share this information with your loved ones and your healthcare team. Ask for their help.
Is there anything that might be “worse than death”? For some, it might be a life of unrelenting pain. For others, it would be immobility or dementia so advanced they can’t recognize their family or friends. Each of us has our own unique threshold of acceptable quality of life.
You may have a general sense of where you are on this continuum of priorities. There is no right or wrong. And there is plenty of middle ground in between. Which of these statements is closest to how you would feel if you were seriously ill?
“As long as there is hope, do everything you can to keep me alive.”
“If my day-to-day quality of life gets too low, I would prefer to be kept comfortable and peacefully let nature take its course.”
How might you change these statements to more closely reflect your feelings? Follow your gut with what feels true for you. Let your doctor, your family, and your healthcare decision maker know where you land on this continuum.
More and more, medicine is adopting the principles of “patient-centered care” and “shared decision making.” Rarely does the doctor tell the patient what to do. Instead, in the ideal relationship, patient and doctor work together to decide on a care plan that helps the patient live according to their own values and priorities.
Consider for yourself: Do you prefer to be involved in all care decisions? To know all the details? Or would you prefer that a doctor choose, or that those close to you work with a doctor to decide on your course of treatment? Again, there is no right or wrong. It’s simply a matter of your own personal preference. Where do you fall on this continuum:
“Please include me in all decisions. Tell me about lab tests and let me know the diagnosis. Explain all my options in detail, including the pros and the cons. Be honest with me about my chances of living or dying. Also my likely quality of life with each type of treatment.”
“I prefer that others take the lead. Make the decisions you think are best based on what you know of my values and priorities. I don’t need details. What I need most is your help staying upbeat and positive.”
How might you modify these statements? Share your thoughts with your healthcare decision maker, your doctor, and your family.
The topics of these conversations are often the groundwork for a time when your healthcare decision maker may need to answer questions about life support measures. Understanding your priorities about quality and quantity of life will be important. It will also be important to weigh the likely outcomes of the different treatments; for instance, cardiopulmonary resuscitation (CPR), ventilators (mechanical breathing machines), and artificial nutrition (tube feeding). It will help your healthcare decision maker to talk with you now about each of these life support measures. Once you know the survival rates, the likelihood of brain damage, whether you are likely to be able to live independently afterward, you can give your healthcare decision maker a better sense of which treatments you are likely to want or not want.
If you are a family caregiver hoping to bring up the subject with a loved one These are big topics and not always easy to bring up with a parent or other relative—especially if you live out of the area and don’t see them regularly. Plus, there may be different generational norms about conversations concerning death or dying. Unless there is a serious illness, they may not want to talk about such issues.
Going slowly—talking about different topics over time—is often the wisest approach (versus one mega conversation). You might use a “soft start,” commenting on a health issue in the news or a friend’s illness and treatment. Ask your family member about their thoughts. Bit by bit, start building greater comfort with the topics.
A bucket list conversation is often a light-hearted way to start. Consider watching “The Bucket List” movie with Jack Nicholson and Morgan Freeman. This comedy allows for some silliness and laughter as a segue to a more serious discussion. Besides, why not share your bucket list? Who knows! This might spark a fun adventure and create an enduring memory.
Even a conversation about what matters most in life can often be introduced fairly lightly, enabling you to introduce larger issues gradually.
A direct talk about death or end-of-life care. This topic is usually the hardest. Once everyone gets past the initial discomfort, though, most families are relieved to have the issues out in the open. Here are some prompts that might help:
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 in terms of treatment at the end. Everyone had a different idea of what should be done. And where he should be. They couldn’t agree. It made a tough situation worse. It occurs to me, I don’t really know what your thoughts are. Should we do everything to keep you alive, or would you rather not be at the hospital? What are your preferences?”
Creating your own advance directive. “I was putting together an advance healthcare directive for myself. This way, my doctor will know what I want in terms of life-support treatment if I am, say, in an accident. You never know. Something could happen tomorrow! I was wondering, what do you think about CPR? Or 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 concerning end-of-life care. You might not be able to speak for yourself. It would help me now to know what your preferences are so we can be sure they are followed.”
A news story. Find something that comes up in the news. It could be about a problem due to a lack of directive. (For past cases in the news, Google “Nancy Cruzan” or “Karen Quinlan.”) Conversely, you might talk about the advantages of planning ahead and letting your wishes be known. For instance, “Did you know that Senator John McCain died peacefully at home? No hospital? No tubes or machinery?” The same is true for Senator Ted Kennedy as well as Presidents Ronald Reagan and George H.W. Bush.
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’s too painful to talk about. Besides, talking about it is bad luck.”
Don’t challenge this belief. Respectfully 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 if you are called upon to make decisions on their behalf, wondering if you made “the wrong decision.” Suggest the two of you come back to the subject in a few days. Planting the seed and letting the subject rest gives your loved one some time to get used to the idea.
“It’ll be okay. I’ll beat this thing. We don’t need to discuss life support.”
Denial is one of many ways people cope with problems that seem overwhelming. It can be a very important strategy for a person who is facing a serious illness. Still, you do 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 offer to work on your own e same time they work on theirs. 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 relative’s conviction and still point out that “God has given us the responsibility to determine how we live up until death.” Then you can share your need to know more about your family member’s wishes.
Consider a family discussion
Instead of focusing on one person’s specific wishes, you might initiate a discussion in which everyone shares their wishes. Everyone is entitled to their own desires. It’s not a debate. But each of you sharing your thoughts lets everyone know who leans more toward lots of intervention with a focus on length of life, and who leans more toward minimal intervention with more quality of life. It also removes the sensitivity of one person being on the hot spot and acknowledges that we all have to address these issues.
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