Adults facing a serious, or even life-ending, illness harbor at least two different types of hopes, said Dr. J. Keith Mansel, professor of medicine and new director of adult palliative care.
There's the patient who hopes to continue working, “to be able to get on his tractor every day,” Mansel said. And there's the patient who says, “'My faith tells me that every breath I take is a gift from God.'”
The first wants to live life to the fullest; the second wants to live it to the longest.
Helping them go down either road, to manage their future according to their wishes, is the task of those working in adult palliative care - a service that is being led at UMMC for the first time in recent memory by a physician: Mansel.
“Palliative care grew out of hospice, which treats patients at the end of their lives, and that's part of palliative care as well,” Mansel said. “Hospice is for patients expected to live six months or less; it's about making them comfortable. Palliative care also helps folks deal with serious, life-limiting illness.
“Is it a terminal illness? Well, if you want a feeding tube, a tracheostomy and if you want to go to a nursing home, then no, it may not be a terminal illness. I try to talk about hope, but the conversation may change over time. It's my responsibility as a physician to tell you what to expect. But you as a patient have to enlighten us on your values, your hopes - what you're willing to go through to gain more time.”
An Oxford native who earned his M.D. at the School of Medicine in 1979, Mansel recently returned to the Medical Center by way of the Mayo Clinic, where he served on the faculty and completed a fellowship in hospice and palliative medicine in 2012.
Originally trained in internal medicine and pulmonary critical care, Mansel was 58 when he decided to take on a specialty whose name comes from the Latin word for “cloaks.”
“That's appropriate,” Mansel said, “because, with palliative care's various services, you're trying to cloak, or cover over, the pain. There might be folks who have heart disease, for instance, and we help them manage their symptoms, such as shortness of breath. But it's also about communicating with patients and their families. From the beginning, it's about developing trust. There can be a lot of distress at the end of life, not just physical, but also spiritual, economic, existential.
“As for patients without family, we would often rely on our social workers and chaplain colleagues to help. I've had patients in the hospital whose best relationship has been with the housekeeper; or it might be the secretary on the ward. You need to be curious about, and aware of, your colleagues, because, Lord knows, we can't do it all by ourselves.”
Much of what Mansel understands about palliative care he learned not from a textbook, but from a hospital bed. About seven years ago, he underwent spinal fusion surgery.
“It was an eye-opening experience,” he said.
That experience as a patient was at least partly responsible for his resolve to enter palliative care medicine. It required tamping down the physician's instinct to help patients prepare for the best, instead of the worst.
“I believe it's human nature that we don't like to give bad news,” Mansel said. “But giving it in an effective and compassionate way is important.
“As physicians, and in our society in general, we're taught to fix things. But sometimes it's not about fixing things; it's about being present and listening, and being discreet.”
A former UMMC faculty member from the mid-'80s until 1992, Mansel was lured back to the Medical Center by, among others, Dr. Charles O'Mara, professor of surgery and associate vice chancellor for clinical affairs.
O'Mara“What makes him special are his communication skills,” O'Mara said. “He's a respectful, patient listener. He expresses himself well.
“He's very engaging and is committed to the team approach, which is necessary in taking care of patients during the most vulnerable time in their lives.”
A palliative care program for children has been in place at UMMC for years and is led now by Dr. Christian Paine, assistant professor of pediatrics, and a pediatric palliative care specialist. Paine, who is helping Mansel establish the adult program, said there are more similarities than differences in palliative care for children, as opposed to grownups.
“The big difference is that with adults, you hope to have an idea of what the patient's wishes are," Paine said. "With pediatrics, the parents have to speak for the child.
“Some of the diseases are different, but the overarching goals and approach are very similar. Underlying all palliative care is the relationship between the physician and patient and patient's family.”
As a physician, Mansel offers an expertise that has been long needed on the adult side of palliative care at UMMC, said Trish McDaniel, chief operating officer for University Hospitals.
“And I know he has a vision that will align beautifully with this organization's mission and with producing a quality academic program for the caregivers of the future,” McDaniel said.
Recruited to head up and strengthen UMMC's program, Mansel had to ponder the move from the Mayo Clinic back to his home state.
“At age 63, I had to consider if I wanted to start something new,” he said. “But my wife and I love Mississippi, and it's a chance to give something back.”
Among his goals here are to build a staff, start an outpatient clinic, develop a fellowship and, “because there will never be enough of us, educate all of our colleagues to do basic palliative care,” he said.
“Primary care physicians don't come to hospitals anymore; in that way, we've lost continuity with our patients. But palliative care goes back to why so many of us went into medicine in the first place.”
ADULT VS. PEDIATRIC PALLIATIVE CARE
Similarities:
* Palliative care seeks to ease pain and other symptoms and improve quality of life.
* Palliative care can start at the beginning of an illness and accompany treatment meant to cure.
* A team helps decide goals for care.
* The team involves physicians, nurses, social workers and chaplains.
Differences:
* A serious illness is not as common with most children, compared to grownups, especially older adults.
* Adult patients are more likely to make their own decisions about medical care, while young children usually depend on their caregivers.
* For children, care may also include a play therapist, child life therapist and/or child behavioral specialist.
Source: Center to Advance Palliative Care