Palliative care more than just hospice
Palliative care is a medical specialty designed to relieve patient suffering by focusing on the needs of the whole person. Many people think palliative care is like hospice care, but palliative care is not just for the dying.
Rose Mark is 82 years old and lives in a retirement community. She moved into the retirement community about ten years ago, right after her husband died. It's close to her oldest daughter, Gloria, and her grandchildren.
Mark used to be a paralegal. Now, she spends her free time playing Mah-Jongg, talking with neighbors, and hearing about the Michigan Wolverines from her grandchildren.
Things were going pretty well until last year. That’s when she was hospitalized with a heart attack. When she went to the hospital, her doctors also told her she had heart failure. Basically, her heart wasn’t pumping enough blood to the rest of her body. It left her feeling weak and short of breath.
Gloria Zimet is Rose Mark's oldest daughter. She watched as her mother wondered aloud about whether she would even see her grandchildren again.
“Family members that know her were shocked to see this 180-degree transformation,” Zimet recalled.
Days passed and Zimet recognized that her mother could benefit from a Palliative Care team. Zimet was familiar with palliative care because it's a service her husband had 3-and-a-half years before when he was dying of brain cancer.
Palliative Care literally means “relief of suffering.” A Palliative Care team can be made up of doctors, nurses, therapists, and social workers. They focus on relieving a patient’s physical symptoms, like pain or shortness of breath. They also talk about emotions and spiritual beliefs. They talk about these things to make sure that medical plans are in line with what patients want.
Gloria Zimet says the Palliative Care approach was ideal for her aging mother. “Someone who really understood the full complexity of who and what we’re were dealing with. And could address her as a whole person. Not just the physical deterioration of her heart and just leave it at that and help the ticker tick again. It’s like what’s creating the problem in the ticker, what’s weighing on it.”
But when Zimet asked the medical team for Palliative Care services, she met some initial resistance. And she soon realized that the medical team thought Palliative Care was only for the dying.
“There’s almost a fear that if you choose to use this tool this is what it means,” Zimet said.
Zimet believed these sensitive conversations would actually enhance her mother’s quality of life. She insisted on involving the Palliative Care team in her mother’s care. Her efforts paid off. Rose Mark, her mother, says the nurse on her Palliative Care team met with her every day. They talked about her fears, and about whether she would see her children and grandchildren again. Mark says these conversations ultimately gave her the courage to actually repair her damaged relationship with her son.
“I adored that woman," Mark said of her Palliative Care nurse. "She was so good, so caring, I felt like she was part of my family, not as an outsider.”
But Zimet is quick to point out that the team’s work was not something the family could have done for her mother.
Lisa Mark is Zimet’s sister, and Rose Mark’s youngest daughter. She says palliative care was like her mother’s life coach at an advanced place in life.
“Palliative care was really able to come in there, take her at conceivably at one of her lowest points in life and offer her something that allowed her to transform that low point into that place where she could fly, where she could have hope again," Lisa Mark said.
The palliative care ended when Rose Mark left the hospital. Lisa Mark wishes it could’ve continued.
“I, like Gloria, wish that my mother could have that ongoing connection…that there was a system that didn’t just stop when the acute crisis got resolved….and not almost demand that she have another crisis in order to get that connection again," she said.”
Rose Mark and her daughters are still looking for this connection. Even though Mark is out of the hospital and her heart has been doing pretty well, she says things aren’t great. Her friends are getting sick and dying, and she feels helpless. She still has to depend on other people for basic things like using the bathroom or reaching the higher shelf in her kitchen pantry. She says now, though, her family relationships keep her going.
- Dr. Nishant Sekaran, Michigan Radio Newsroom