In the story below, there is an important sentence: We discussed possible actions with Dr. X and decided to halt all invasive treatments, a course that my family has long agreed to.
I know from personal experience what this simple bit of family planning can mean for the terminally ill patient and for his or her relatives. My Mom's living will had this directive, among others:
That no extraordinary measures be used to prolong my life if in the sole judgment of my daughter and my physician such measures will not restore me to a level of life that is commensurate with the mental and, to a lesser degree, physical standards by which I have been fortunate enough to live. Without limitation, such extraordinary measures include cardiac and/or pulmonary resuscitation, mechanical respiration, tube (intravenous and/or nesogastric) feeding and antibiotics.
She wrote and signed this in the early 1990's, when she was in her early 70's and therefore likely well before it would be likely to be applied. The application of her directive occurred two years ago after an accident left her with a severe head injury and internal bleeding in her brain. When it became clear that, in her words, "the application of life-sustaining procedures would serve only to artificially prolong the moment of my death", my sisters and I were empowered to have a short and decisive conversation to remove the respirator and other measures that were keeping her alive. With no regrets on our part, she died just a few hours later.
Afterwards, the ICU nurse kindly reaffirmed our decision, saying to me: "You, of all people, know that we can keep people alive forever. You did the right thing. She would have spent the rest of her life on her back in a nursing home, unable to talk or move. Surely, she would not have wanted that."
A living will with this kind of advance directive is one of the greatest gifts a parent can give to his or her children. If you don't have one, or your parents don't, please have one prepared and discuss it with your relative while you are both still able to do so.
One of the best parts of your blog has always been not only the thoughtful posts but the thoughtful comments which attend them, and this holds true for the original post reproduced here. People sharing their own experiences creates a true community.
ReplyDeletenonlocal MD
Thank you for this word of wisdom. As a priest, I have spent many hours, nights counseling with families whose loved ones did not make a living will, thus placing them in unenviable position of making a decision which can be psychologically second-guessed for many years. A simple living will makes this still difficult but clean. Clergy and physicians can do so much by encouraging this action by folks who they care for. Thanks again.
ReplyDeleteIt is important to remember that living wills need to be updated and signed to satisfy the lawyers associated with the hospital.
ReplyDeleteIf hers had not been signed within 10 years of the incident it would have taken much longer than a few hours to have their permission to follow through on the doctor's orders. (The nurse said sometimes it was a week.)
It is difficult to let go.
I think for most people the decision is difficult to reach because when the situation occurs there is not agreement by the survivors.
As she told me after our father's passing, "If he had been choking to death I would have disregarded his living will and would have had them save his life."
The papers worked for us but none of these issues are totally black or white.
My thoughts are with you and your family
ReplyDeleteI'm not sure what is a more loving gesture - your mother's gift of providing clear messages about her desires or you sharing this experience with others so that they might benefit.
While I recognize that living wills have their limitations, they are a heck of a lot better than nothing. I wish there were more proactive ways to get a much larger percentage of the population to execute one such as making executing one part of the process of signing up for Medicare. The information should ideally be stored on a registry so it is readily accessible by doctors and hospitals when needed.
ReplyDeleteI supplemented mine by a simple typewritten and signed memo that outlines my wishes under various circumstances such as dementia and late stage cancer plus a few other conditions. The lawyers tell me that it has absolutely no force of law but its main purpose is to give my son and spouse more guidance and detail about what care I want and don’t want than is included in my broadly worded living will which can’t anticipate all conceivable circumstances in any case.
From Facebook:
ReplyDeleteI have had one for many years and my daughter has a copy of it. Like you said, it is one of the greatest gifts a parent can give to his/her children.
From Facebook:
ReplyDeleteWe put a great deal of pressure on family members during a crisis but if conversations occur before then family members are not really making a decision but only representing the family members values when they can not speak for themselves. Wonderful post.
From Facebook:
ReplyDeleteThank you Paul. I've had a blank advance directive on my desk for 3 years very much convinced that I must complete it. I believe the difficulty some of us have in coming through has to do with a sense of confusion about the details and what some of the phrases represent(in this day and age, you say!) Bueno. Ya es hora.
From Facebook:
ReplyDeleteThank you for sharing.