More on End of Life - Family Dilemmas

Increased medical technology creates a burden on family decision makers and loved ones as well as doctors, nurses and pharmacists. Listen to the (free) National Public Radio interview with journalist Stephen Kiernan on medical care at the end of life, from December 4, 2006.

It’s not surprising that there would be misunderstandings between doctors and patients and families during high stress crises. The end of life is, of course, potentially one of the worst times in life of the individual who is dying and all the loved ones around him. The doctors are speaking their own language. The patient and family members not only have to learn new skills and evaluate technology and weigh risks versus benefits. They are each bringing their own perspective, emotions and world views to the bedside. The experiences of everyone will even differ by the time of day and the “baggage” that they bring to each meeting.

And each time we add a new "routine" or "experimental" therapy or protocol - whether it's the ventilator, a new thousand-dollar-per treatment drug, or deciding on dialysis or feeding tubes, the questions become harder.

I’m concerned that end of life care too often becomes care of the families’ fears and pain, rather than being focused on the actual last days of life of the patient herself. We stop treating Moma or Daddy in his or her own best interest and begin to intervene in an attempt to ease our own psychological and spiritual pain. I’m reminded of the natural childbirth literature of the ‘70’s, that accused us of ignoring and adding to the baby’s pain and shock because we are all holding our breath, waiting for his first breath. Labor and delivery is hurried with chemicals and surgery, the lights are overly bright, and we suction, rub and – in the past – slap the baby’s behind for our benefit, not his. It’s as though we can’t breathe until we are reassured that he is alive, even if he is screaming in pain.

Mr. Kiernan reviews the dilemmas that he and his family endured during the illnesses and deaths of his parents. His mother and siblings didn’t realize until after the fact that have a tracheostomy performed on his father was not “progress.”

Mr. Kiernan also speaks of what he calls the “tradeoffs” that go along with hospice coverage. If I understand it properly, however, Medicare does not require a patient to give up dialysis or other treatments. What happens is the hospice contracts with Medicare for a given fee per patient. If a patient needs dialysis, there’s no extra money. On the other hand, Medicare will pay all the costs for outpatient dialysis, but the patient will not have access to the specialized care and services available through hospice.

I thought my “Advance Directive” covered everything. But Mr. Kienan adds a point that I hadn’t considered: he wouldn’t mind being kept alive “by any means necessary” for up to 48 hours in order for his family to gather and say good bye. Then, he wants all the life support stopped and to be placed in the sun.

(Mine was amended after Terry Schiavo’s death. Essentially, I’ve always said, “don’t wake me up to ask me!” There’s a new note that asks for ice chips and for someone to place chocolate on my lips.)