It is so easy to theorize about what you would do. What if you were on life support with the prospect of spending the rest of a long life as a quadriplegic on a ventilator. Would you say “good bye” to your wife who is carrying your unborn child and ask them to turn off the vent?
That is exactly what Tim Bowers did. Click here for the ABC telling of the story.
Just over a week ago Bowers was hunting and fell sixteen feet to the ground from a deer stand. He fractured three vertebrae and damaged his spinal cord. The medical team advised his family that he would be paralyzed from the shoulders down and probably dependent on machines to breathe for him for the rest of his life. The family wanted to see if the patient could participate in the decision-making process.
When he woke up from the sedatives that had kept him unconscious he could not speak but could answer yes-and-no questions. “Do you want this?” they asked, meaning “Do you want to be kept alive on this machine?” He shook his head “No.” They removed him from the ventilator and he died a day after the accident.
This is what we in the medical community have been advocating. NOT that people be allowed to die. What we want is for patients to be involved in the decision-making that might end his or her life. They woke Bowers up and asked and he essentially said, “Let me die.”
As soon as I read this story I thought, “I know many paralyzed people on vents who might say he made the wrong decision.” Think Stephen Hawking. Sure enough I found one blogger who is paralyzed who took issue with how this case was handled.
Perhaps the decision came too soon after the injury. Law professor Thaddeus Pope wonders whether Bowers had “sufficient decision making capacity at the time he made the decision?” In states where physician assisted suicide is legal there is a waiting period from the first request for life-ending medication to a second and final request. Pope asks whether or not Bowers was fully informed about the “options and possibilities of life as a paralyzed individual.”
I tend to agree. Give a little time. If the patient persists in his request to be taken off the machine, by all means, comply.
Years ago I was called to the beside of a heavily sedated man on a ventilator after a heart attack. His wife explained that he had been on a vent before with his heart condition and wrote a living will so he would never be on a breathing machine again. I told the ICU nurse about my conversation and she said, “It is too soon to think about that.”
Well, he was able to get off the vent and out of ICU. I visited him a few days later. He was walking around his hospital room gathering things as he prepared for a transfer to another hospital to have a defibrillator implanted in his chest. I asked him, “How do you feel about being on a ventilator again?”
He said, “I am so glad they did?”
There you go.
It’s a big problem. Actually, it is several big problems and Louisiana is trying to do something about it.
I will narrow it down to two problems:
1) Conversations between physicians and patients or their care givers about end-of-life care rarely happen or occur so late that they offer little guidance for the final weeks or months of a person’s life.
2) Patients who transfer between hospital, nursing home, assisted living, and home often are not accompanied with any instructions as to what the patient’s wishes might be for his/her care.
Louisiana is one of 16 states that have adopted a POST or POLST form. POST stands for Physician Orders for Scope of Treatment. POLST is Physician Orders for Life-Sustaining Treatment. I mention the Bayou State because I was just down there speaking.
BTW, I was expecting a slower pace of life in the sleepy Southern towns I was visiting — Covington, Madisonville, and Mandeville. They are at the northern end of the 24-mile Lake Ponchartrain Causeway. At the other end is New Orleans. I spent more time stuck in traffic than I do around my home in the Washington, DC suburbs. Evidently, the population in these little towns has mushroomed after 2005 and Katrina. I did find quiet in a park along the Tchefuncte River in Madisonville only to be caught in bumper-to-bumper, stop-and-go traffic for the mile going back into town to the four-way stop.
On the program, I followed Dr. Susan Nelson of Baton Rouge. She chairs the LaPOST Coalition and gave an overview of the Louisiana POST. Do yourself a favor and click here to go to the LaPOST Web site. Of the many resources on the site is a section on Religious Faiths and Cultural Heritages. Check it out for diverse views of illness and end-of-life care.
There is also a national Web site promoting POLST/POST at http://www.polst.org.
The common thread running through all the states’ initiatives is an encouragement of conversations among physicians, patients, and/or family members as one’s health declines. All have a standard form in each state that travels with the patient if they are transferred between facilities. The goal is not to limit medical treatments necessarily as one approaches the end of life. The goal is to encourage and make a record of the conversation between a doctor and those making health care decisions. Some may choose to limit life-prolonging procedures and others may want more aggressive care.
The point is to plan ahead and let others know what the goals of care are.
I commend Dr. Nelson and her colleagues for the excellent job they have done in service to the citizens of Louisiana.
Now. . . would you put traffic congestion as an agenda item at your next coalition meeting?