As hard as it is to accept that someone we love is dying, it's important that we understand how our loved ones want to live their final days and how we can help them approach death on their own terms.
When thinking about the end of life, ask your loved one to consider these questions:
- What makes life worth living?
- What would make life not worth living?
- What seems like too much to endure, but might be manageable after accepting it?
- What would be comforting if I knew that life was coming to an end?
- What would I want to avoid if I knew that life was coming to an end?
Answers to these questions might include: being able to talk with people, being able to think clearly, move freely and take care of oneself, the burden of care on others, the importance being at home, what medical procedures are not worth enduring, pain management, who to consult about end-of-life care.
Ideally, the person who is ill has an advance health care directive so that there is an official spokesperson when he or she is too sick or too confused to communicate wishes.
If a caregiver hasn't had the necessary conversations with the person who is ill — due to reluctance, dementia or a crisis — the caregiver might have to come up with answers on his or her own.
Some questions that might help in thinking about end-of-life care and planning are:
- What has that person actually told me?
- How can I find out for sure about her or his wishes?
- Turning now to myself as the caregiver, what would be important to me?
- What would I especially like to know about that person's wishes?
- What would be the limits of what I could do?
- Could I take time off work? How much?
- What physical limitations do I have?
- What kinds of care would be just too much emotionally for me?
- Am I willing to accept the responsibility of being someone's official spokesperson?
- If that person has relatives who would be especially difficult to deal with, how would I manage being the official maker of decisions?
How to Talk to Loved Ones About Their Wishes
All of these questions may sound difficult to discuss when the time for decisions is still in the future. However, they are harder to discuss when someone is really sick, emotions are high and decisions must be made quickly. Progressive illness may take away the ability to discuss complicated issues. The earlier everyone sits down to talk, the better.
Arrange a time to talk. Someone else’s death or illness may offer a good opportunity to bring up thoughts you had about their choices. Perhaps you could say you want to talk about things that might happen in the future, in case of serious illness. Have some ideas to bring up. Be prepared to listen a lot, and to ask questions. Do your best not to criticize what the other person says.
If you know the other person will not want to talk much about this topic, have just one or two important things to say or to ask about. Be prepared to break off the conversation, and to come back to it another time. Write down the important things people say. Eventually, you can use your notes to prepare a statement of wishes and make this statement part of an "advance directive" about health care decisions, whether or not the formal document has been completed.
Based on content from the Family Caregiver Alliance article "End of Life Choices: Holding on and Letting Go."
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