An end-of-life pioneer
This was the sort of situation that made surgeon Karl Ahlswede think there had to be a better way to die and, maybe, a better way to be a doctor:
One of his patients, an elderly woman, had survived cancer and heart surgery, but had landed in the intensive care unit with pneumonia.
She had been on a breathing machine for 10 days, and her family was facing a tough decision. Should it allow doctors to insert a feeding tube and do a procedure that would insert a breathing tube into her neck rather than through her mouth?
Three out of four doctors involved in her care believed the patient would never be able to breathe on her own again.
The woman couldn't speak. One daughter said her mother had told her she never wanted to live on a machine. But nothing had been written down, and another daughter and son wanted all-out care. They fought and cried. In the end, technology won out, and the daughter who thought her mother would have wanted to die was devastated. "You're making me do something that I promised I would never allow to happen," she said.
Ahlswede, who doesn't know what ultimately became of the patient, found the situation "horrible to watch."
The problems were obvious, but common. Even with a history of serious medical maladies, the patient hadn't written a living will or designated a decision-maker. Even if she had had a living will, many are "essentially useless" because decisions at the end are rarely as clear-cut as people think they will be, Ahlswede said.
Witnessing too many ICU dramas made Ahlswede so interested in end-of-life issues that last summer he made a highly unusual career move. He gave up his surgical practice at Lankenau Hospital to start a business helping clients write advance directives and working as an independent adviser when death approaches.
"I was taking care of people who were very ill and did not have these well-worked-out plans in place, and I just saw an awful lot of suffering in families and patients," said Ahlswede, who is also a palliative-care specialist. People need to think about how they want to die and talk with their families long before they get to the ICU.
While more and more hospitals are forming teams of caregivers to help patients at the end of life, medical counseling about death remains a hot-button issue. The infamous "death-panels" rhetoric from Sarah Palin and others effectively killed an attempt to provide Medicare coverage for end-of-life planning in the health-care-reform bill. The issue resurfaced recently when the government issued regulations that would have allowed Medicare coverage of voluntary advance-care planning with primary-care physicians. Then the administration dropped the new regulation earlier this year as attacks on the reform law mounted.
So far, business has been slower than Ahlswede - a tall, soft-spoken 49-year-old who still seems a little uncomfortable as a salesman - had hoped. But he's encouraged that several clients have been nurses who have seen the same problems he has. He says he has the luxury of having enough money to allow his unusual business to build slowly. "The way I look at it is there's very little competition for me as well," he said wryly.
Insurance doesn't cover Ahlswede's services, and he thinks that's fine. People need to trust the person helping them with end-of-life decisions, and insurers have financial interests that work against that trust. He thinks a tax credit would be a better idea.
In the meantime, he's charging $360 an hour, although he'll negotiate with people who can't afford that rate.
That charge may depress demand, but Americans' cultural reticence about discussing death also probably plays a big role, other experts said.
"Most of the studies suggest that only one quarter to one third of the American population have some sort of advance directive," said Nathan Kottkamp, a Richmond lawyer, who founded National Healthcare Decisions Day in 2008.
"We don't want to think about our mortality," he said.
David Casarett, a palliative-care doctor at the University of Pennsylvania, said many doctors would agree that advance directives have often been too specific to work in real situations. "It's really, really hard to anticipate what treatments a patient would want and what treatments would be appropriate," he said.
In the last four or five years, there has been a trend toward more goal- or values-based directives. Patients describe the life they want and value, rather than what they think should happen if they have a terminal illness or a permanent brain injury. It can be hard to tell, for example, whether a coma is irreversible or when cancer becomes terminal, but perhaps easier to know is whether a patient is suffering or will ever be able to return to the garden she loves.
There are free online model advance directives easily available, but Ahlswede believes his experience helps him clarify what really matters to clients. "There's just enough uncertainty to create havoc," he said. "They need a guide. I've been up that mountain before."
During a recent meeting with Jim and Judy Snyder at their home in Gwynedd Valley, Ahlswede asked about their health histories, their experiences with the deaths of loved ones, and how they want to live as they age. It was particularly important to Judy to be able to care for herself in her own home. Neither wanted to spend much time on life support if either was unable to communicate.
He wrote simply worded documents for them saying they would prefer to die if they couldn't take care of the house or walk and feed themselves there. They want "comfort therapy with aggressive pain management" if they can't have those pleasures or if they have been in a terminal or minimally conscious state for more than a month.
The Snyders, both in their 60s, were pleased. "I think it's time well spent," Jim said. "I feel less stress already," Judy added.
Another client, who has a strong family history of dementia, settled on these words: "If I am unable to walk with minimal assistance, read with comprehension, communicate with my friends, and feed myself in my own home, I would prefer to die."
Some, of course, want more extreme measures.
It's key to remember, Ahlswede said, that, in the absence of instruction, doctors will err on the side of giving more care and that you want to choose a medical-decision-maker who will follow your wishes, not his own.
Ahlswede, whose wife is a palliative-care nurse, said he was drawn to end-of-life medicine because of the need. But he also discovered that, horrible as the family meetings in the ICU can be, he was good at them. "I learned that I can talk about death and dying well. If I've been given a God-given talent," he said, "I can approach this in a respectful way that can help people."
He considers it a privilege to spend time with people who are dying and feels good about the feedback he has gotten from clients who've had family members die.
A nurse friend at Aria Torresdale, where Ahlswede works part time in the ICU, connected him with Barbara Kelly, whose husband was dying of the debilitating neuromuscular disease ALS. He helped her understand her husband's condition and talked with her husband about his wishes. After the family decided to disconnect the breathing machine on New Year's Eve, Ahlswede and his wife went to their home in Northeast Philadelphia to help.
"He's just an angel," Kelly said. "I never knew there were doctors like this. We would have never got through this if it hadn't been for him."
Ahlswede said it was a remarkable way to spend New Year's Eve. As her husband died, Barbara Kelly held him and told him what a great man he was. "It was, in ways," Ahlswede said, "one of the most beautiful things I ever saw."
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