Palliative care: 'Bringing medicine back to where it's supposed to be'
Editor’s note: This is the second of a two-part series. The first part can be read here.
CONCORD — It’s 8 a.m. and a group of doctors, nurses, social workers and spiritual counselors gathers around a conference table in a building at Concord Hospital. The team of palliative care providers brings out a Himalayan prayer bowl and for more than an hour, takes turns speaking about their patients — all facing life-changing diagnoses.
“We’re bringing medicine back to where it’s supposed to be,” said Dr. Stephen Rust, executive director of Capital Region Palliative Care and Hospice. “My whole life as a doctor, I’ve been taught command, to be in command of the situation, to be in command of the care. But here, we’re listening to people. We’re not giving up responsibility. We’re sharing it.”
On this day, they discuss an elderly gentleman with dementia, with vivid memories of his dead wife; he talks about seeing her again. It’s the only time he’s cried in front a team member. He’s also a devout Catholic who believes his religion calls upon him to do everything to keep his body alive.
“He’s reflecting on his memories in a positive way,” said Laura Brennan, a social worker with the team. “But he’s following his faith. He thinks he needs to keep his body alive, but before he was talking about not wanting to suffer.”
The group determines it might be helpful for a priest to stop by.
“He needs to talk to him about the benefit versus the burden of his life and that he’s not obligated when it becomes too much for your family,” Rust said.
This is how the team starts each weekday at Capital Region Palliative Care and Hospice. Their job is to help patients find out how they want to live — or die. They help them to decide their medical course of action, whether it’s curative or for comfort. They help them to find ways from the hospital to the place they are most comfortable, whether it be a nursing facility, hospice, or their home. They talk about their future and what life-saving measures they may or may not want.
Those who provide palliative care describe it as the type of patient-centered health care that has been somewhat lost as medicine has become more specialized and complicated by billing, insurance, paperwork and the like.
“In the way the medical system is now, I know a lot of doctors would love to sit down and get to know their patient, but it’s just not always possible,” said Cara Leuchtenberger, a nurse navigator on the team.
Dealing with a patient’s spirituality is a large part of the palliative care process.
“People’s suffering does really come from a spiritual place, an existential place,” said Leuchtenberger.
The team talks about a woman with cancer; she’s discussed going into a hospice home and the family seems to agree. But one family member seemed to be dealing with guilt at not bringing her home, and overwhelmed with fear over how to handle the situation if she has a medical emergency. The team agrees the woman’s condition requires very specific and extreme care that only a hospice can provide, and talks about helping to get her into a hospice bed.
Both Brennan and Pat O’Connor, an advanced registered nurse practitioner, were there for the conversation with the family. O’Connor talked about a question that Brennan asked that she now plans to include every time she speaks with a family.
“Have you ever had experience with anyone dying before?” O’Connor said. “That’s so important to know.”
Such personalized care for life-altering decisions also means relationships develop between team members, patients and their families. When a patient’s condition leads to death, team members experience their own grief.
“That’s why we have the team,” Rust said. “We can talk about it. We’ve all been through it.”
Silver Linings is a continuing Union Leader/Sunday news report focusing on the issues of New Hampshire’s aging population and seeking out solutions. Union Leader reporter Gretchen Grosky would like to hear from readers about issues related to aging. She can be reached at firstname.lastname@example.org or (603) 206-7739. See more at www.unionleader.com/aging.