As told by Beverly Salisbury, a volunteer with Park Nicollet Methodist Hospital Hospice:
Most people think of hospice care as something for a person nearing the end of their life. But the reality is that it’s for that person’s family, too. When someone you love goes into hospice care, the entire family enters hospice care.
This was my experience, not once, but twice in my life.
After a 5-year struggle with complications from an episode of sepsis, my husband entered Park Nicollet Methodist Hospital Hospice care. When a loved one enters hospice care, it is a crisis for the whole family. We were sad, stressed and exhausted. The Park Nicollet Hospice team was amazing, though. They provided the comfort, care and sanity that we all needed. In the end, my husband was able to spend the last few months of his life in the comfort of his own home. And we were guided through a very painful time.
Several months after my husband's death, my brother passed away while being transitioned out of a hospital in a different health system. As I witnessed how different that complicated transition was for my brother and his family, it seemed that there had to be a better way.
That’s when I learned about the Park Nicollet Foundation Love and Legacy Campaign. The campaign is working to raise $1 million for a Comfort Care Bed program and Transition Guide Role pilot.
Nancy Gelle, Manager of Hospice and Palliative Care at Methodist Hospital, says the vision for these programs is to influence change throughout health care. The goal is to create a better experience for patients and their families.
“A study published in the Journal of the American Geriatrics Society found that about one-third of people on Medicare who passed away had four or more moves within their last six months of life,” she explains. “Personally, I know we’ve had patients who died in their driveways when being moved from the hospital back home.”
Nancy explains that care at the end of life is often fragmented. This can lead to multiple transitions in care settings that can be difficult on the patient and their family.
The Comfort Care Bed program lets patients stay at the hospital when death is near. Park Nicollet Methodist Hospital Hospice provided this service to their first patient in May 2017.
“The patient was in her 80s and in hospice care at the hospital,” Nancy explains. “It was day 5, which is when she was supposed to be transferred out. At that point, she was no longer waking up. We were able to move her to Comfort Care Bed status. This allowed her to stay where she was, with the comfort of familiar surroundings and a care team who knew her.”
The patient passed away soon after. But the story wasn’t over yet.
“We later found out that this patient’s children were spread out all over the country, but that she had volunteered at Methodist Hospital for decades,” Nancy says. “By being able to stay at Methodist, she said she felt like she was going home. She was able to have the same team, the right care and a comfortable location. And we were able to help someone who helped us for so many years.”
Since then, two more patients have gone through the Comfort Care Bed program.
When going home makes the most sense, the Transition Guide Role will be there to help. Right now, transitions are not always successful in meeting the patient or their family’s goals for care. Moving between the hospital and a rehabilitation facility, home or assisted living facility can be overwhelming. Patients and families are confronted with new surroundings and unfamiliar care teams. And that’s stressful and sometimes frustrating. I know just how important it is to be able to trust your care team. When you are dealing with complex health issues, they become almost like family. So losing them can be traumatic.
Adding a Transition Guide Role will help patients and families as they navigate these moves. The Transition Guide will work closely with patients and families. They will identify the family’s goals for care. They will be a point of contact in outpatient and inpatient settings. And they will regularly communicate with the patient, family and medical teams. All in all, they will help care transitions go smoothly.
Gaps in care at end of life reach far beyond what’s happening here in Minnesota. Families across the country struggle with these issues. So I’m proud to see Park Nicollet making strides in improving this experience.
Beth Warner, Park Nicollet Foundation Executive Director, recognizes the importance of programs like these and the generous donors who are helping to make them a reality.
“There are real gaps in the health care system in terms of care and experience for patients and families,” she says. “Our work at the Foundation goes far beyond fundraising. It’s about improving and investing in the health and quality of life for people in our community. These programs are two great examples of how innovation, philanthropy and care are coming together to make a difference and influence change.”
My own experience highlights the need for these programs. You cannot put a price on patient dignity. And you can’t overemphasize the importance of peace of mind, especially when it comes to end-of-life care. I am proud to help bring more of this type of innovation to other families like ours.