Tuesday, December 13, 2011

Making Our Values Known

One day in my office, an elderly couple said that they had a document they wanted to add to their advance directive. It went as follows:
"I have a firm belief that God created me, that there is a natural cycle of life, that death is inevitable, and that dying should be peaceful, comfortable, at home, if possible, and without tubes, artificial nutrition and ventilator support. If I cannot carry out self care, do not have my usual mental faculties, or have an incurable disease or intractable pain, please treat me with the best care for comfort but not invasive life support care. It is quite acceptable to withhold fluid and nutrition from me and treat me with a morphine drip as part of this care for comfort, letting nature take its course. I have no wish to be a burden to my loved ones, or to spend resources and energy on heroic efforts to prolong my life when life is at end. Only in the acute situation (e.g. trauma) would I want heroic life support to try to get me back to my present state of good health. My worst nightmare is to spend my days in a nursing home with a feeding tube. Quality, not quantity,of earthly life is more important". I was delighted that they had taken the initiative and that we could talk things over.

This type of statement can be added to one's living will and serves as a very important guide to the physician and your loved ones. The conversation is focused on your values, not just on what high tech marginally beneficial treatment could be attempted. Please consider doing this or something similar such as a Five Wishes form or one from Compassion and Choices. Also, general values statements can be of use.

The ultimate document putting values into medical orders is the POLST form, but this form is generally most applicable in the last year of life, for hospice patients, or for the frail elderly who are sure what they would or wouldn't want in a medical crisis. For the rest of us, the addition of a values statement to our living will (plus having the important discussions with our family, friends, physicians, and durable power of attorney for health care) will be our best assurance that indeed our wishes will be respected.

10 comments:

  1. I now work in a state that does not utilize the POLST. A pity.

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  2. I would like to have permission to use this as a quotation in order to discuss this sensitive subject with my family. I am a health care professional myself who has seen so much sadness around this very subject. I have also seen so much comfort and joy when the matter of death and dying has been openly discussed and provision made. Thanks for posting. LH

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  3. Please do use this quotation freely. I hope that it may help.

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  6. I had fairly routine surgery this summer (at hysterectomy at age 55), but made a point to have an updated living will and POLST filed with my hospital. It basically said "I want to be able to get out of bed and control my life" after surgery. My surgery went well, but since then, one relative died after a year of mystery illness, a second one is in hospice after multiple falls and 2 years of pancreatic cancer treatment and a third is about to have surgery for cancer. I hope we're paying attention to the wishes of our relatives. I know the one in hospice, before he recently became more seriously ill, at one point agreed that hospice would be right for him. Now, sadly, all he can say is "No." We're not really sure what he's saying "No" to.

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    1. It can be very stressful being a surrogate for someone who can no longer make their wishes clear. All we can do is struggle to be a fairly strong advocate for them. It's almost never easy. Best wishes!

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  7. It's very hard with my husband's uncle in hospice. I am glad my husband was able to visit him about 3 weeks ago, and at that point, while very weak, his uncle was able to talk to him. My husband's been his health care proxy for the last two years, but his uncle, until last week, lived with two men around his age. Due to his constant falls and medical problems, they had trouble caring for him, and he did wind up in the ICU for a few days following a fall with head trauma. He's been in the hospice ward since Thursday. He has been unresponsive since yesterday and wasn't eating or drinking a day or two. before that. Two years ago, he'd said he didn't want to wind up on a vent or with a feeding tube, and he doesn't have either. One of his roommates wants to try to bring him home, but the nurse thinks he wouldn't survive the trip.

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    1. I think you're doing everything you can. The hospice nurses and staff are generally a great team giving good advice. My brother-in-law died at home a few hours after being brought home on hospice. It was very hard on my sister with the thrash of trying to get everything set up at home, when she could have spent the precious hours with her husband.

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