There are many conversation topics we might avoid discussing with our loved ones. Planning for end-of-life care is probably at the top of the list. We know the old adage — only death and taxes are certain — yet death remains a taboo subject.
While 90 percent of Americans believe talking with their loved ones about end-of-life care is important, only 27 percent have actually done it. What’s more, 70 percent of people would prefer to die at home, yet 70 percent of deaths occur in long-term care facilities or hospitals. Clearly, important discussions about your loved one’s preferences for end-of-life care are worth having.
The process of making decisions about the kind of care you would want to receive if you became unable to speak for yourself is known as advance care planning. Sharing your wishes with loved ones is equally important to making those decisions.
“It's an opportunity to have the conversation—while you are still able—on how you want to live near the end of your life, so your wishes can be honored when the time comes,” says Honoring Choices Pacific Northwest.
Making your Choices
In preparation for talking to your loved ones, make a list of your wishes. Most of us have a line in the sand we could draw between what we are willing to endure and what isn’t worthwhile. For some people, that could be how physically active they can be or how much medical care they need. Try finishing this sentence: “What matters to me at the end of life is…”
If you’re ready, you can also think about acceptable life-prolonging measures. Do you want your doctor to take all steps available, including mechanical ventilation (life support) or a feeding tube? These are complicated issues your doctor can help you understand.
Finally, consider who you want to make decisions on your behalf if you become unable, and if you know who that person is, investigate creating a Durable Power of Attorney for Health Care (DPOAHC). A DPOAHC grants another person the ability to make medical decisions on your behalf in the event you are unable to do so.
Starting the Conversation
When you are ready to talk to a family member or loved one, start simple: Who do you want to talk to? If you have created a DPOAHC, that person should be part of the conversation. When is a good time? Where is the right place? Once you are sitting down and ready to talk, there are several tactics we have found helpful:
Remember the purpose is to make your choices known and reduce stress later if family members need to make decisions for you.
Use examples. Think back on a time when someone was hospitalized with a serious illness. Use that experience as a starting point for discussing what you would want in a similar situation.
Make your intentions clear: You want to have the conversation when your mind is clear and you’re not in distress.
Invite them to speak in a “neutral zone” with a religious leader, trusted friends, or a health care provider.
We found that patients who participated in a discussion about advance care planning with a trained facilitator had a positive reaction to the process.
“It was so helpful to hear myself say my wishes out loud,” one patient remarked at the end of the discussion. “I didn’t feel like I was talking about death. I felt like I was talking about life.”
Continuing the Conversation
There are a variety of different forms you can fill out and procedures you can go through to formally establish your wishes, including creating a living will, a durable power of attorney or advance care directives.
After you start talking to your loved ones, keep the conversation going. Our desires and wishes naturally change over time, so think of this as the first steps in an ongoing process.
Honoringchoicespnw.org is an excellent resource for information on starting the conversation. For a detailed step-by-step starter kit (available in multiple languages) visit theconversationproject.org.
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