One day back in 2012, Mary Doty woke up in an ambulance next to a nervous-looking EMT.
She had been out of it, he told her. The cardiac monitor they had hooked to her showed nothing. All of a sudden, he said, she sat up and said, “I put it in your hands, God,” then laid back down. Moments later, she came to.
“You scared me,” he said.
Doty, a matter-of-fact woman who’s easy to delight despite her troubled past and daunting health prospects, had to ask the man whose living is made on close encounters with death: “What was it that scared you? Was it the fact that I sat up or that I put my life in God’s hands?”
She recalled him smiling at her question, then leaving. She saw him again soon, and he told her he had started going to church. Recently, when she spotted him in an ambulance, he called out the window to her: “Still goin’ to church!”
It’s one of Doty’s favorite stories, and she laughs as she tells it. That was a year when she spent so much time at Ellis Hospital it was like a second home.
Two years later, now 61 and living in public housing in Schenectady, Doty has trouble remembering the last time she rode in an ambulance or visited the hospital.
The difference is Care Choices, an in-home palliative care program launched last November by Ellis Medicine and the Visiting Nurse Service of Northeastern New York. The program has taught her how to manage her pain, symptoms and medications, how to resolve issues at home to avoid hospitalizations, and how to better communicate with her doctors.
Through consultations and home visits from nurses, aides, chaplains and social workers, Doty knows with near certainty how she wants to die. More importantly, she knows how she wants to live while she’s dying.
Doty knows she’s is going to die; her doctors just haven’t issued a down-to-the-month prognosis because her illnesses are many and the combination of symptoms muddies the picture. Chronic obstructive pulmonary disease. Emphysema. Diabetes. A former heavy smoker, drug and alcohol abuser, Doty has had two heart attacks, a stroke that left her reliant on a walker, and mental illness and anxiety that contributed to two failed suicide attempts.
She said these days she owes her peace of mind to God and Care Choices.
“There is no getting better for me,” she said. “It was something I had to face. I’m terminal. There is no getting better. What they helped me do was find a peace of mind. I’m not going to be stuck in one of them homes being told when to get up, when to go to bed, what to eat, ‘no you can’t do this.’ I have my freedom, and that’s always been my wish.”
Americans don’t like to think about dying, but world leaders in health care are urging people to both think and talk about it, starting early in life, because those discussions will not only lower costs but improve the quality of life as patients near the end. The Institute of Medicine just last week issued a 500-page report that said as much, with research and recommendations from a 21-member committee of health care providers, insurers, religious leaders, lawyers and experts on aging.
Care Choices is Schenectady County’s response to decades of such urging. It will serve about 215 patients this year on a nearly $1.2 million budget. New York state provided a $350,000 grant toward the program, and reimbursement discussions are ongoing with various commercial payers interested in the growing palliative care movement, said Phil Di Sorbo, palliative care director for Ellis Medicine and VNS.
More support is likely to come, he said, once the program has been in place long enough to produce sizeable data and positive results.
Palliative care focuses on care that enhances the quality of life — body, mind and spirit — for people with serious, often terminal illnesses. Unlike hospice care, patients don’t give up curative treatment.
Already, a seven-month study of the program by Union College’s Psychology Department found emergency room visits and inpatient hospital stays had dropped significantly for patients after they enrolled in the program. Patients also reported a significant decline in shortness of breath over the course of the program and said they felt as though they had been treated as individuals with unique needs.
Ellis Medicine has had its own palliative care consultants for some time, but the care was always administered in hospital settings, and usually too late.
“What often happens toward the end of life is patients end up in the [Intensive Care Unit], they’re on 25 different medications, they have six chronic conditions and then somebody starts talking to them about how they want to approach the end of life,” said VNS President Joe Twardy. “That conversation happens five years too late. Palliative care is starting that conversation before those last hours, days, months. And it can ultimately lengthen life because it’s so holistic.”
Informed conversations aren’t happening in doctors’ offices, experts say, because they’re time-consuming and so charged with emotion. End-of-life planning means broaching difficult subjects like human dignity, independence, disability and possible paralysis, feeding tubes and ailing bodily functions. There’s also no financial incentive, since the time doctors spend having discussions with patients about end-of-life care is not reimbursed under Medicaid and Medicare.
A provision in the Affordable Care Act to allow physician reimbursement for end-of-life care counseling was removed after a 2009 campaign to block Obamacare led people to believe it would include “death panels” — a term coined by former Republican Alaska governor and unsuccessful vice-presidential candidate Sarah Palin.
Federal representatives have pushed for its inclusion ever since. U.S. Rep. Earl Blumenauer, D-Oregon, sent a letter Wednesday to the federal Centers for Medicare & Medicaid Services urging it to adopt recommendations that would adequately reimburse providers for having these discussions. U.S. Rep. Bill Owens, D-New York, signed the letter along with 33 other House members.
Gwen Bondi has been having these conversations since last November with Schenectady County organizations, faith-based groups and anyone else who will listen. As community conversations educator for Care Choices, her job is to get people thinking about these difficult topics and then bring them home for further discussion over the dinner table.
It could mean the difference, she said, between a guilt-ridden family deciding to pull the plug on grandma and a self-assured family knowing exactly what she would want them to do.
“Advanced-care planning opens up the thought process about what’s valuable to you in your life,” Bondi said. “If you can speak and recognize people around you and you get enjoyment out of that, great. If you reach a point where you can’t recognize your family anymore, you may decide that life isn’t worth living for you. In every case, it’s going to be different. There’s no right or wrong answer that we push on anyone. It’s about choices, and making choices so your family doesn’t have to make them for you can be a great gift.”
These days, Doty’s still leaving life-or-death matters to God. She doesn’t deny herself basic medicine, but she doesn’t believe in inserting tubes into man-made orifices and she refuses to be treated at the hospital for things she can treat at home.
On a recent morning, Doty, wearing a purple nightgown and blue Crocs, her gray hair loose to her shoulders and an oxygen tube in her nose, rattled a sizeable pillbox in her living room. She gets regular visits from nurses, social workers, chaplains and health aides who check on her when she has trouble breathing or has an anxiety attack or her blood-sugar readings get too high.
Both an ex-boyfriend and an ex-boyfriend’s mother had tracheotomies, and she tended to and cleaned the openings herself. It forced her to think uncomfortable thoughts, like whether she’d ever want a family member to do that for her.
“I’m very self-conscious as it is,” Doty said, “and I see the way people treated and looked at them. And I just — I don’t want to. Don’t prolong me. God did not want me prolonged. God did not make those machines. Man made them. Man came up with those ways. When God wants me, let me go.”
Should anyone ever walk into her home and find her unresponsive, a bright pink form hanging next to her living room door will let them know as much.
Not every Care Choices participant is a Mary Doty, said social worker Michele Armstrong, but they don’t need to be.
“It takes people a long time to make peace,” she said. “They may never get to the point where Mary is, of saying I know I’m going to die [and] I want it to be peaceful. They might die kicking and screaming with surgeries and tubes, and that’s their choice, and one way is not right and one way is not wrong. Sometimes we feel like we’ve failed if they don’t make peace, but it’s not our journey. It’s their journey.”
Doty has an appointment next month to pick out an urn. If her family doesn’t want her ashes sitting on a mantel somewhere, that’s fine with her. Just take her out on a boat, she says, and let the wind carry her to rest on the water.