My parents are getting to that age where I have to start thinking about these things: End of life. Hospital? Hospice care? Funerals. It’s not something we like to talk about here in Minnesota or in the United States. Except we have to talk about it because we are all going to deal with it.
So, let’s talk about hospice care. It’s not a place we go, it’s a decision we can make about our health care.
Grace Hospice serves patients in Southwest Minneapolis through in-house hospice care or in assisted-care facilities. The care institute connected with Southwest Voices because they are working to destigmatize hospice care and educate people on when hospice care can be used.
End of life care is rarely talked about in our society, and according to Kelsey Tietje, director of Business, Development and Marketing at Grace Hospice, is loaded with stigma and misconceptions. Hospice organizations have found that many people believe hospice is just where you go to die when death is right around the corner.
“It’s where you go to experience peace and beauty at the end of your life,” Tietje said.
Going into hospice care does not mean death is imminent. There are situations where people graduate from hospice because their health improves.
Hospice care focuses on a patient’s comfort and quality of life rather than medical interventions. Because of the stigma around hospice care, it’s not something people seek out as early as they could. Establishing a hospice care relationship earlier allows the hospice workers, including nurses and doctors, to develop a relationship with the patient and the patient’s family.
Hospice care can result in choosing comfort over fighting to live. As Tietje explained, U.S. culture is focused on finding the cure rather than being comfortable at the end of our lives. The norms around fighting for cures plus the stigma around hospice care, leads to fewer people seeking end of life care in the United States. This kind of stigma doesn’t exist in other countries where end of life care is more openly accepted.
Grace Hospice’s volunteer coordinator Denise Egan and Tietje both said that President Jimmy Carter’s choice to enter hospice is helpful in educating people on the purpose of hospice care.
"He has a quality of life focus now," Tietje said.
An opinion article about Carter’s hospice care, written by directors of a non-profit hospice, reiterates sentiments shared by Grace Hospice staff.
“While we are not surprised that after two months President Carter is still alive, we know that timing of hospice and care provided is misunderstood,” the article reads. “Hospice care focuses on keeping patients comfortable while not prolonging life with curative treatments.”
Hospice care has been covered by Medicare since 1982, about 10 years after hospice care came to the United States. As part of the insurance coverage, volunteer work must make up five percent of providing services related to patient care or administrative support.
Grace Hospice currently has 50 volunteers. Egan said volunteers come from all sorts of backgrounds, from college students to retirees.
“They have heart and a strong desire to be a loving presence,” Egan said.
Volunteers visit with patients and engage with them through activities like conversation, listening to music, or looking through photographs. Volunteers also give respite to full-time caregivers.
Marion Anderson has volunteered with Grace Hospice for about a year and has been doing hospice volunteering for five years. She brings her cavalier King Charles spaniel, Elsie, to visit with patients. Elsie loves to sit on patients’ laps.
When Elsie and Marion visited with Grace Hospice patient Elliot Anderson, no relation to Marion, Elsie eagerly jumped up on Elliot’s lap and stayed there until Elliot fell asleep. When I visited, Egan told me there are plans for Elliot to ride in a motorcycle sidecar and for him to get a temporary tattoo through an outside organization.
After Elsie’s visit with Elliot, Marion chatted with a person outside and Elsie once again hopped up, happy to sit on another person’s lap. Marion connected with that person on their military service. With Elliot, it was on their shared last name.
“I feel it’s really, really important that they know that we’re there. That they’re not alone,” Marion said, affirming her place in volunteering. Marion has been volunteering with Grace Hospice for five years but has been interested in hospice care for 10 years.
Marion witnessed a similar care experience when her sister-in-law was placed on hospice care. Marion was so moved by the experience that in that moment she said, “this is it.” She had found her ministry.
While she enjoys taking Elsie to visit patients, she also works with patients who are close to dying. She holds vigil for these patients. She has special, private songs on her phone and prayers at the ready. Even a rosary tucked away if her patients are also Catholic.
Marion told me of the time she sat with a patient who was close to dying. She visited him one day and he was in his last hours of life.
“I prayed and I made sure he heard my voice,” Marion said.
She told him she would be leaving in about 20 minutes but that she would be back.
“Within that 20 minutes, he passed away,” Marion said. ”I just felt like he didn’t want to die alone.”
A year later, Marion got called back to the same facility and sat with a woman who passed away within about two minutes of her being there.
It was his wife.
“We need more people to be with people,” Marion said.
Grace Hospice has had an uptick in requests for volunteers with pets. At Grace Hospice, a lot of their patients have dementia or other cognitive decline. Patients have been able to communicate with the animals and vice versa. Grace Hospice is always looking for volunteers, with a special interest in those with pets. There is a mandatory training and vetting process to bring your pet along. They currently have volunteers who visit with dogs, cats, and bunnies.
“This is a perfect place for me to be,” Marion said.