Bringing Comfort to Pain and Passage
Palliative care eases the suffering of seriously ill patients and their families
Why is my wife on a ventilator?” asked the man in the emergency room.
“Because her cancer has gotten worse,” replied Adam Marks, M.D.
“What cancer?” asked the man.
“The lung cancer she was diagnosed with several months ago…” said Marks, surprised by the question.
“Oh no,” said the man. “God came to me in a dream and told me to lay hands on her and I did and she is cured of her cancer.”
Marks pauses as he recalls what happened that day in the University of Michigan Intensive Care Unit on one of his very first days as a resident. The young doctor looked up the woman’s record. Several months before, she had been diagnosed with metastatic lung cancer. She had been offered chemotherapy with the understanding that it probably wouldn’t cure her disease, but might add a few months to her life; she had declined. Now she was back in the ER unable to breathe. And Marks was in the midst of an impossibly difficult conversation.
But he wasn’t particularly surprised. Throughout his schooling Marks had noticed a disturbing disconnect in the way physicians and patients talked – or, rather, didn’t talk – about death and suffering. Again and again, he’d witnessed people with a life-limiting disease who were surprised to learn that their disease was, in fact, life-limiting.
Because of this misunderstanding, they and their families were being forced into untenable positions. There was suffering, fear and panic. Late-night trips to the ER. People were receiving painful, pointless interventions and dying in the intensive care unit – instead of peacefully in their homes. All because of a failure to communicate. Now, Marks was face-to-face with just such a situation, unsure how to proceed.
“I thought, ‘This is going to be a disaster. This is going to be faith versus science and this poor woman will be stuck in the middle and she’s going to die a terrible death and there’s going to be anger all around.”
Instead, a group of doctors trained in palliative care was summoned to meet with the family. Marks watched as an unexpected miracle took place.
“They said, ‘As doctors of science, we can’t comment on matters of faith but what we can comment on is that your wife is dying and it is beyond our ability, as mortal hands, to heal that.’ And he got it,” he recalls.
Soon, the woman’s family gathered around her bed. They prayed as the ventilator was removed and she died a peaceful, calm death.
What happened next changed the course of Marks’ career. “The husband came around and hugged each one of us. It really drove home the power that this kind of care can have for somebody. I completed my residency, then applied for a fellowship in palliative care and here I am.”
Today, Marks is an attending physician who works in adult and pediatric palliative care in both inpatient and outpatient environments. He’s part of the University of Michigan Health System’s new Adult Palliative Medicine (APM) program, an initiative that positions the institution as a national leader in the emerging field of palliative medicine.
Those who have devoted their lives to the field feel passionate about defining it, particularly in the face of recent efforts to politicize their work. Terms like “death panels” and “rationing” horrified palliative care specialists across the nation. In fact, the field is so broad yet so nuanced, it can be confusing to pin down.
“I have senior doctors asking me the difference between palliative care and hospice, for example,” says Raymond Yung, M.B., Ch.B., chief of the Division of Geriatric and Palliative Medicine. “Some people mistakenly believe that palliative care is only for patients who are incurably ill; our goal is to provide relief from the symptoms and stress of a serious illness – whatever the diagnosis.”
That, adds Yung, means aggressively addressing all aspects of a patient’s suffering: pain, nausea, diarrhea, agitation, anxiety, depression, even when — especially when — it is clear that a cure is no longer possible. And it means doing so in a manner aligned with their faith, beliefs and values.
To that end, the new APM program — built on more than 10 years of committed work by by concerned physicians from all specialties, as well as nurses, social workers, spiritual care workers and administrators — is making a quiet but profound difference in the way medicine is practiced at the U-M. Since 2005, the APM consult service has met daily to confer honestly, compassionately and creatively about some of the sickest patients in the hospital. The service’s interdisciplinaty team has worked with over 5,000 such patients, some of whom are clearly dying, others just overwhelmed by suffering and confusion about their diagnosis and options. When called upon by a patient’s primary physician — or, increasingly, by patients and their families — the team visits patients in their rooms to listen to their needs, to plan and to help.
For patients near the end of life, the goal of those conversations is to understand a patient’s preference, says Marks.
“I’ve had people say, ‘It’s important to me to feel as if I have fought for every day with my family. I need to know that I have done everything in my power to stay on earth as long as possible.’ It’s quantity, not quality,’’ he says. “And they need to be ‘full code’ and their death needs to happen in the ICU, and that’s our job. Any limits to care will be the limits of futility. We wouldn’t offer a heart transplant or a lung transplant if it would be of no benefit.”
He adds that being part of a large and world-renowned medical institution means that patients often come here expecting to be cured after other hospitals have “failed.”
“My job is not to take away someone’s hope, but to share in that hope,” he says, “and also to plan for what we expect. It’s my job to tell them that. I say ‘I will continue to hope with you for a cure, even if we’re talking on the level of a miracle, but this is what I expect.’ The research about communication is fairly limited, but we do know that people are looking for a balance of hope and realism.”
The program also serves the outpatient clinics of the Cancer Center, the Geriatrics Center and Chelsea Family Medicine. They maintain a strong partnership with the VA Ann Arbor Healthcare System and with area hospices.