Making end of life decisions can't be easy. You'll need a framework
of understanding to be able to talk to your aging parents and to get
your own perspectives out of the way. What you might choose, and what
may be important in their decision-making could be very different things
without your ever realizing it.
The following video clip is from the PBS Documentary, Consider the Conversation. In it, Dr. Martin Welsh, an ALS patient was shown going through his day, with an audio of his reflections on making end of life decisions. By this time, his voice has been severely distorted by the disease and the clip includes a voice-over. Dr. Welsh died in 2010.
You can read Dr. Welsh's LA Times essay, 100 Things leading to a single choice.
Someday, they may not be able to speak for themselves.
If you are their
medical power of attorney,
it would be your duty to talk to their doctors and make the choices and
decisions that your parents would have made for themselves. Filling out
the forms is not enough. You'll need to know what they believe, what
they value, what they need to make their life worth living. Those are
the things that form the backdrop to conversations and decisions about
medical procedures or medications or treatments. You can't have truly informed consent in the medical context, until you understand what's truly important and of value in their everyday life.
Doctors and medical professionals don't necessarily feel equipped to have these difficult conversations either. It may be up to you to take the lead with your parents, with their doctors, and have the conversations that may make all the difference in their quality of life until the end.
will be critical for these talks. Having the time, creating a safe
space. Letting them know you are on the same team and you only want to
be a champion for what's important to them.
This is definitely a time when you will have to search deeply into you own heart and soul, and be clear about the things that could get in your own way. Your goal is to listen. Your desire is to understand. And your purpose is to carry our THEIR wishes. What you may want could be very different than what they may choose. What you might decide for yourself could be radically opposed to what they express. But this is NOT about you. Your grief, your desires, your hopes and wishes, you will get to express -- for yourself, with your doctors, to your children. But this is now a conversation about your mother's life. About your dad's values. About being able to be authentically their voice, their mouthpiece, until the end.
End of Life Planning
Begin to talk about end of life planning with aging parents. Estate planning, advance directives, finances, their pets? What do you need to know?
End of Life Issues
Stephen Kiernan, author of Last Rights: Rescuing the End of Life from the Medical System is interviewed in an upcoming PBS documentary urging people not to resist looking at the "don't know". What do we do when we know?
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