Monday I read with interest the Amednews.com article by Kevin O’Reilly: 1 in 3 Surrogate Decision-makers Carries Lasting Emotional Burden: a new study finds that advance directives ease stress when making treatment choices for others.
"We had always thought about documenting your wishes and knowing what the patient wanted as a protection and a benefit for the patient," said Wendler, head of the Unit on Vulnerable Populations at the National Institutes of Health Clinical Center's Dept. of Bioethics. "This study suggests that there is an additional benefit as a protection for the family. Just leaving decisions up to the family may well be counterproductive and make it harder on the family, not easier."
She repeatedly over the years told us what she wanted and what she didn’t want. We are able to discuss it without feeling morbid. My husband is not.
My dear husband finds it uncomfortable when I want to tell him what my wishes are when the time comes for tough choices. I tell my siblings and hope they will help him (and me) when the time comes.
I don’t know what his wishes are. So if I have to make the choices for him, I may in reality be making the choices I would want made. Because it won’t be clear, there may be conflict between what his family (parents and siblings) would chose verse my choices.
Many of us medical bloggers promote Engage With Grace (a movement aimed at having all of us understand and communicate our end-of-life wishes) over the Thanksgiving weekend. The Annuals of Internal Medical article (full reference below) reinforces the importance of this discussion between family members.
I would go so far as to say the discussion should occur between friends as well.
Having the discussion may become a lasting gift of peace you and I can give each other.
Here are my Five Wishes (pdf file):
1. I would ask my sister (CD) to help my husband (BH) make care decisions for me when I can't.
2. If there is no chance of recovery from the illness, then simple make me comfortable. Do not do anything and everything. If there is no chance of recovery from a major trauma, then do what needs to be done to preserve the organs for donation. If the doctors don’t remember to ask, then tell them. Donate everything that is usable – this includes the face, the hands, bones, heart, liver, everything. As I wish to be cremated, it will be nice to know someone is helped.
3. I am not fond of pain, but hate the foggy headedness and nausea I get from the pain medicines I have taken. If possible find a compromise for me so I can be aware of visitors, listen to music and books, etc.
4. I want visitors who will tell me jokes and stories, who will read books (novels, adventure stories, mysteries, newspapers, etc) to me. If I am able, I will play cards and checkers with you. Bring the dogs along. Watch movies and TV with me. Cover me with a colorful quilt.
5. I want all of you to know I love you. Here are My Funeral Wishes. If we (BH and I) still live at the same house when my death does occur (hopefully years from now), then spread my ashes under the oak tree in back (the one with the wind chimes) where the ashes of Columbo, Ladybug, and Girlfriend reside.
Systematic review: the effect on surrogates of making treatment decisions for others; Wendler D, Rid A.; Ann Intern Med. 2011 Mar 1;154(5):336-46.