Tuesday, November 10, 2009

Where to Die?

Speaking recently at a class for patients called "Your Life Your Choices", I stated that most Americans prefer to die at home. Bob raised his hand and said, "Not me!" He was in the minority ten percent. He adamantly didn't want to die at home. I met with him later to learn his story.

It all started when he had trouble swallowing. Liquids went down fine, but a piece of meat seemed to get stuck. The GI specialist recommended an endoscopy to look at the esophagus. Bob reluctantly agreed if he could be sedated enough. The procedure went smoothly, but the pictures showed a rough angry narrowed area which restricted the passage. The diagnosis proven by biopsy was cancer. This was three years ago.

There was the subsequent surgery where a large portion of the esophagus was removed and a portion of his colon inserted to bridge the gap. It worked fine, but the cancer came back with a vengeance. Chemotherapy and radiation therapy seemed to help but his treatment options had been exhausted. The cancer was running its course.

Bob was ninety now but looked much younger. He had to force himself to eat and was loosing weight. A hacking cough had developed because of intermittent aspiration of liquids into his lungs. He knew that pneumonia was around the corner and that his time was limited.

But Bob didn't want to die at home, "Listen doc, I just don't want to have my wife and children watch me die. It's too much of a burden for them. Also, no one wants to buy a house where someone just died."

Bob was now enrolled with Hospice which, in his health plan, was home focused. He loved the nurses, and they had agreed to move him to an inpatient unit at the end though he was still insecure about that actually happening. He had standing orders in a POLST form (Physician Orders for Life Sustaining Treatment) which both he and his doctor had signed. He didn't want CPR but he did want aggressive management of pain and shortness of breath. He was ambivalent about fluids but didn't want a feeding tube. He was worried if he died suddenly when away from the house that Medic I would be called and CPR attempted. To deal with that his wife copied the POLST form and carried it with them whenever out of the house. Hospice continues to be his lifeline and gives him a sense of control. He came up to me after class and thanked me for the review, but mainly for listening and validating his wishes about not dying at home.

Comment: Although I think I would prefer to die at home, Bob's preference was fine and needed to be respected. Bill Moyer has a PBS series on dying called "In Our Own Terms" . In one of the stories, a doctor with esophageal cancer said, "Dying without Hospice care would be like having surgery without anesthesia."

In contrast in the 1960's when I was in medical school at the University of Pennsylvania, we only whispered about death and dying. We were lectured by an eminent surgeon, "Students, never tell a patient that they have cancer. Talk to the family and they will decide what to do." Additionally, I vividly recall the Chief of Surgery at the hospital (for whom a pavilion is now named). I saw patients with him in his private clinic. An elderly woman was referred to him with a far advanced neglected fungating breast cancer which was obviously wide spread. He said to her disingenuously as he held her hand, "My dear, thank goodness you got to me in time."

Fortunately these paternalistic approaches are no longer used or taught, thanks to true pioneer born in 1929. Elizabeth Kubler-Ross, MD , a Swiss psychiatrist taught us about dying in her landmark book "On Death and Dying.". Her work led to the hospice movement and understanding the stages of grief.

Thanks to these dramatic improvements in patient care, I'm hopeful that Bob can feel peaceful and cared for at the end which isn't far away.

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