It is your life and death: failing to plan, is planning to fail

John Gray is back working in intensive or critical care nursing, and thinking about the end of life. 

First a background story:
About 20 years ago, I was sent out on my first legal aid housecall to talk with a patient under hospice care about end of life.  He was living at home, his wife answered the door, one of his two adult son's was there.  He was on oxygen, and looked gaunt and frail.  Leaning on a walker (Zimmer) he shuffled over and joined his wife and me at the kitchen table. He had rejected talking about end of life care with the social worker and nurse from hospice, I was an outsider - probably the last resort - in trying to get him to talk.  After a few minutes of small talk about family and how long they had lived in the area, I got down to work.  His initial reaction was to brush me off, so I turned to his wife and asked if she had a "Living Will Directive" the form we used to name a health care surrogate and leave instruction on end of life care.  She didn't and I suggested doing hers' first. I was hoping this would ease the way, break the ice with the husband.  Her wishes were clear and easy, she wanted one of her sons to help with medical decisions if needed and when the time came, she didn't want life support or feeding tubes.  As she put it, she had had a long and happy life and when her time came, she wanted to go without a fuss or struggle for an extra day or hour.  When I finished her paperwork, I turned to her husband and asked, "what do you want?"  His answer was, "I don't need one of those things, I am praying for a miracle to cure this thing that is killing me, and I don't care if they have to poke extra holes to run the tubes in, I am not going a second sooner than I have too."  I think my head spun around three times.  When I came to my senses, I said, "if that is the way you feel, let's put that in writing." And we did, he wanted life prolonging care, CPR, or a feeding tube if it would keep him alive an extra day, while a cure was being developed.  Bottom line, he was discharged from hospice, and agreed to take part in clinical trials at the medical school.  When I asked him about hospice, he said, "I was told hospice was what I should do, you are the first person who asked what I wanted." 

I learned from that early experience, that health care and end of life care are very personal decisions.  What is right for you, is what is right for you.

The standard of care, is to do everything medically reasonable to extend your life.  This includes mechanical interventions to replace naturally occurring bodily functions (breathing machines, kidney dialysis,) feeding tubes, the use of medication to treat infections when the person is otherwise terminally ill and death is near. 

If you don't leave directions, the standard of care is what you are likely to receive.  If your wishes are something less than the full court press, you need to make your wishes known.  Even if you want every effort taken to prolong your life, you should still make your wishes known; 20 years of experience has taught me that it is much easier for the family if they know what the person wants. 

In the United States, every state has some form for documenting health care wishes and naming a health care agent.  Check your state department of aging or state attorney general's website for the requirements in your state (the requirements vary from state to state.) Just as important as putting it in writing, it talking about your wishes with your family, close friends and health care providers.  They need to know, they may never find your written advance directives, or may ignore them if they are unsure how you really feel. 

There are some tools to help figure out and document end of life wishes.

• The Conversation Project http://theconversationproject.org/ 
• Go Wish http://gowish.org/
• The Stanford Letter Project https://med.stanford.edu/letter.html

In addition take time to think about who and what you want around when you are seriously ill.

Document and talk about:

• Who you want around (provide names and contact information)
• What things do you want around
• Do you want to be in bed, in a chair, 
• What sounds do you want around (if you don't, Fox News or CNN will be the soundtrack of your last days) 
• What religious practices do you want or not want
• What textures do you want to feel
• What smells do you want to be surrounded by.

None of these things will make death easier, but they may make if less stressful.  It is your death, let the world know what you want.