Living wills: A personal story

Last year, my father died at age 88. And while he spoke of having a living will, he never got around to doing one.  That presented a quandary for my brothers and me, when he went into an intensive care unit in a hospital.

After he passed away, I wrote a column for AOL’s WalletPop that described this predicament that our family faced after his death. Here it is:

Dollars & Health: Living wills, death panels and my dad

Oct 8th 2009

When I arrived at the hospital, my father lay unconscious in the intensive care unit. A staff member was able to waken him. He opened his eyes and, recognizing me, moved his hand toward mine. Then he quickly lapsed back into an unconscious state.

My father was 88 and had multiple health problems: emphysema, chronic obstructive pulmonary disease, and now, a second bout with pancreatitis, which had sent him again to a hospital. Years of tobacco and alcohol use had caught up with him, yet he had survived a stroke years before and was still living at home, by himself, and had no terminal diseases.

My brothers and I thought our father had a living will, but a call to his lawyer proved otherwise. So while he lay unresponsive, hooked up with an array of tubes, we discussed what he would want in medical care.

In other words, we became a family ”death panel” of sorts. But not a government bureaucracy rationing health care to the sick and disabled, as envisioned by opponents of health care reform. The proposed legislation would pay doctors if a patient wanted to discuss end-of-life care, including a living will and hospice. It would be a voluntary consultation.

Passing health reform, in other words, won’t lead to ”pulling the plug on Grandma,” as President Obama and allies have insisted.

Still, the health reform debate has focused on the intractable problem of skyrocketing medical costs. And the last year of life consumes a large chunk of health care spending: The 5% of Medicare patients who die each year account for about 30% of the program’s expenditures.

A recent study, however, found that terminally ill cancer patients who discussed end-of-life treatments with their doctors had less money spent on their care with no difference in survival, and died more comfortably than those who received aggressive care.

My father had given one of my brothers the medical power of attorney to make decisions on his behalf. On a couple of occasions, dad had mentioned that he did not want to be in a vegetative state as his mother had been for years, in a South Carolina nursing home. We also knew he had wanted to live, and was trying to walk without assistance when he was hospitalized.

A document spelling out what our dad wanted in medical care, though, would have made our decision-making a little easier.

A living will expresses your preferences on what you consider acceptable treatment, such as tube feeding and ventilator care, if you’re unable to make decisions for yourself. A medical power of attorney designates a person to make decisions for you if you’re incapacitated, as my father was.

Taken together, they are components of an advance directive.

“It’s very important for families to have these conversations on what they want,” said Sally Hurme, a senior project manager at AARP, and also an elder-law attorney. “These conversations are more important than the legal document. Knowing what their values are, what their preferences are, makes the surrogate’s decision so much easier. ”

And it’s better to do this long before you’re on the way to the hospital, she adds.

Laurie Jacobs, a geriatrician at Montefiore Medical Center in New York, said, “Patients who have early dementia, their prognosis may be quite long, but the window of opportunity when they can do this is not that long.”

Each religion has guidelines, Jacobs said. “People who are religious seem to grasp these issues better.”

In choosing a health care proxy or power of attorney, Jacobs advises people to choose someone who can navigate the health care maze.

A living will can’t cover every possible situation. Generally, it addresses your wishes on areas such as ventilator care, resuscitation, nutrition or hydration, You may want to involve your family, a religious adviser, and a doctor in deciding what you want.

You can change an advance directive at any time, or cancel it. And if you can answer medical questions yourself, and are competent, your spoken wishes on medical care trump any written instructions. The provider will follow the patient’s wishes, Hurme said.

My father never fully regained consciousness. We followed the medical team’s suggestions along the way, first to wean him off medications. But the ventilator was a different story. He didn’t appear able to come off it.

My brothers and I had differing opinions on his care through a week in ICU, but eventually reached a consensus. It didn’t come easy.

With his condition deteriorating, my brother with the power of attorney consulted with the doctors. They felt removing the ventilator was the only way he could work his way back to a normal life, and avoid an unresponsive existence in a nursing home. So the ventilator care was halted.

Dad was able to breathe on his own for a few hours, but then passed away.
His hospital experience, in obvious ways, made an impression. I came home determined to have these end-of-life discussions with my own family.

As Hurme said, everyone over 18 should have a conversation about emergency medical scenarios.

An advance directive ”can give us peace of mind, and peace of mind for caregivers who may have to make decisions for us,” said Kathy Brandt of the National Hospice and Palliative Care Organization. “At the very least, you should name a health care power of attorney.”

Only about 25% of Americans have completed an advance directive, Brandt said.

While an attorney can be helpful, you can fill out the advance directive paperwork without one.

Note that different states have different laws. State-specific forms can be obtained from a hospice organization, a hospital, or state aging office. The National Hospice and Palliative Care Organization offers free forms.