Death used to be a family affair. Not it is increasingly, institutional.
My father’s story — the final days of a frail 88-year-old with advancing dementia at the end of a long and rewarding life — poses a modern dilemma, wrote Lisa M. Krieger in 2012.
It’s a story of people doing their best in a system that’s built to save our loved ones. And it’s a reminder of the impossibility, during a crisis, to assess costs and benefits that aren’t at all obvious.
How could the hospital bill for the final days of a man — with carefully prepared end-of-life instructions — add up to $323,000 in just 10 days?
Just because it’s possible to prolong a life, should we?
Describing her father’s final days, Lisa wrote: Alzheimer’s crippled his fine mind. And his hearing had faded. Frustrated by his inability to hear, comprehend, or speak, he turned silent. There were moments of contentment, but every day he seemed more remote, sad and uncomfortable. He asked for my mom, dead for five years. He hid his wallet and accused caregivers of theft. One night he tried to escape through a window. His back ached. His heart was arrhythmic. And his bones had grown brittle.
When he tripped and broke his hip three months earlier, surgery was traumatic — he couldn’t understand why he hurt, where he was, or how to heal. Increasingly, he just slept.
On a lovely Saturday, under a cobalt blue sky, we shared a happy day of gardening. He became drowsy after lunch, so I drove him back to his assisted care facility.
He wasn’t feeling well that Sunday, and he couldn’t say why. The doctor prescribed antibiotics.
By Tuesday he was shaking, dehydrated and speaking gibberish. Fear was in his eyes. I raced him to Stanford’s emergency room.
The diagnosis: septicemia. The medical nightmare started. He needed fluids, antibiotics and a tube to help failing lungs. It was the last time I saw him conscious, the last time I saw his open eyes.
Should we have quit then? Suddenly, that “do not resuscitate” order seemed unclear; its black-and-white legal language didn’t really apply. He needed a ventilator to help him breathe long enough for antibiotics to work. Dad’s acute infection seemed treatable. Doctors said there was a decent chance we could turn it around. We’d likely know within a day, they said.
I was adrift in a sea of conflicting emotions. This was a man who gave me life. Who was I to summon his death? Proceed, I said. It’s a risk worth taking.
So Dad was moved into the ICU, and I got a bedside cot. There were glimpses of hope; his blood pressure was stabilizing. He held my hand again.
Yet by Friday, I noticed something new — every time nurses moved him, Dad winced in pain. After repeated blood cultures, X-rays and another day in the ICU, we finally had a diagnosis: necrotizing fasciitis, a rare and deadly flesh-eating infection.
Now was it time to stop?
Unwittingly, with the best of intentions, we were violating his desire for “a natural death.”
Only surgery could turn around this galloping infection, doctors said. Antibiotics weren’t enough. I heard the phrases “wound care,” “possible amputation” and “skin grafts.”
But could an 88-year-old with weak bones, an irregular heartbeat and dementia survive? When all the specialists left, I summoned my strength and stopped the attending physician: Please, tell me what’s ahead of us.
“A long and bumpy recovery, with no guarantee of success.”
Feeling alone, I phoned Dad’s surviving family and friends. Their wisdom: Let him go. He is suffering without purpose.
Dad was moved out of the ICU. Over the next four days, his breathing turned shallow, but he slept deeply, sedated by painkillers. A nurse woke me at 3 a.m. Two young doctors rushed in and asked his cooling, pulseless body: “Mr. Krieger, can you hear me?” A chaplain came, with prayers.
Then it was just the two of us, in blessed silence. No more expert opinions, beeping monitors or hissing respirators. No more tests. No more tubes.
I kissed him goodbye, packed my bag and walked into the cool night air.
Modern medicine had carried Dad’s body beyond what it could bear.
State your Advance Medical Directives well in time.
Appoint another person to be your health care “agent,” with legal authority to make decisions about your medical care if you become unable to make these decisions for yourself.
Write down your preferences about accepting or refusing life-sustaining treatment such as CPR, feeding tubes or breathing machines, and about receiving or declining pain medications.
Express your wishes about organ and tissue donation.
Having a completed and fully executed form means that your end-of-life health care wishes have been translated into actionable physician orders — specifying whether only comfort care, limited intervention or full treatment is desired.
The real benefit of ‘advanced directives’ is that they point doctors to a surrogate decision-maker.
Read full story here: http://www.mercurynews.com/2012/02/05/the-cost-of-dying-its-hard-to-reject-care-even-as-costs-soar/