My 89-year-old mother lives with us, and we have had frequent conversations about what she does want and what she does not want to happen at the end of her life. Like most of us, her fondest hope is that she will simply slip away in her sleep, but we know that doesn't happen very often. Her own mother had Lewy Body Dementia, and spent about a year in assisted living, and then a specialized memory care facility. In the end, she fell and broke her hip, and we were talked into surgery. While she survived the surgery, she never walked again, and she was so far into her dementia that she was never lucid again. She was sent to a nursing home, where she refused to eat, and while the facility would allow her not to eat, they insisted on fluids, which prolonged her dying to about three weeks. That was a terrible experience for my mother, and she does not want anything like it to happen to her.
Mom has decided that at her age, she does not want any surgery, or any heroic medical interventions. Luckily she is in very good health, but realistically, there is an expiration date on that. She has some balance issues, and has had a few falls, so a possible scenario is that she falls and breaks a hip. She is adamant that she does not want surgery, and at her age, and with her poor balance, it is unlikely that she would ever walk again if that happens. So what to do?
Then, in January, I read this article in Paula Span's "The New Old Age" Blog in the New York Times (before it was cancelled...) :
It's about an attorney in Massachusetts who is concerned that if he becomes demented, he does not want anything done to prolong his life unnecessarily, including food and drink. The letters that poured in responding to the article included one by Judy MacDonald Johnston, which referred to her TED talk about the end of life, which you can see here:
In her letter she mentioned that the "good end of life" she was able to achieve for the couple she refers to in her talk only came about because she had "solid gold" caregivers who prevented a surgical intervention right at the end of the woman's life. In response to that experience, she wanted to share what she had learned about what is necessary to insure that an individual can have the end of life that they choose. Her ideas can be found at:
After reading the website, I finally realized what we need to do. We need to update Mom's Advanced Directives, which I downloaded from the Pennsylvania Department of Health website. While she is calm and clear, she will make her wishes known to her physician as to what she wants. If she falls, and we think she has fractured her hip, we will go to the Emergency Room to determine whether that is the case. This is important, because we need to be sure that is what has happened, and in the ER they can give her pain medication. Then, with her physician's agreement (and perhaps intervention) we will start her on hospice and return home.
Today, we met with Mom's physician and presented our plan. He works several mornings a week at a local nursing home, so he was 100% behind our plan. He and his nurse signed the Advanced Directives, and made a copy, and he even reminded us to be sure that there are copies in several locations.
While this sounds simple, there are several areas of controversy. In the ER, it is most likely that when a fractured hip is diagnosed, an orthopedic surgeon will be called, and there will be strong pressure to perform the surgery. The usual argument is that she will be in too much pain otherwise. That is the reason for ordering hospice right away, since they are the ones who have the appropriate pain relief medications and who can help put in place a team to care for her at home. Second, in the ER, they tend to disregard Living Wills. However, the packet that we have put together meets all of the criteria to require them to pay attention to her desire not to have surgery.
And what if all of this happens when I am out of town?
This leads us to the second part of our plan. We are retaining a Geriatric Care Manager* who will be monitoring Mom whenever I am not available. She will have her own copy of the Living Will and Health Care Power of Attorney and she is supportive of our plan. In fact, we have named her as the third person who has the power to enforce the Advanced Directives, in the event that my sister and I are not available.
While doing the paperwork has been somewhat uncomfortable, both for my mother and myself, we have agreed that now that it is done, we never have to discuss it again. And we can go back to hoping that she will just slip away.
*I will do a post on Geriatric Care Managers in the future.