Overcoming Barriers to Hospice for People with Disabilities

When Mary Ann Sabo was told her brother Stephen only had a few months to live, she immediately knew two things. First, she would bring him to her home to spend his final days. Second, she would need help – a lot of help.

Stephen had been born with spina bifida, which brought with it a host of physical and developmental disabilities. He was living in an independent apartment in Grand Rapids with a lot of daily support prior to an accident that landed him in a rehab facility where the pandemic accelerated his decline.

Mary Ann reached out to the team at Emmanuel Hospice to see if moving him to her home was even possible. Her brother would need help with pretty much everything – dressing, toileting, bathing, medication management and a host of things neither she nor her husband felt prepared to undertake. An Emmanuel social worker spent a day making calls before reaching out to tell Mary Ann the one word she most wanted to hear: yes.

“Stephen had a lot of complex physical needs I couldn’t handle on my own,” Mary Ann recalls. “Emmanuel Hospice was our quarterback, providing my family with the most compassionate team to lead his care for the final six weeks of his life. They recommended a skilled nursing agency that could support Stephen’s daily needs with kindness and grace. Emmanuel even found us a sitter who could spend time with Stephen when my husband and I had to work.

“For so much of Stephen’s life, we heard no, no, no – we couldn’t accommodate whatever the ask was because his needs were far too complicated. At the time when it mattered the most, Emmanuel got us to yes in the blink of an eye.”

That’s one of the primary reasons Cara Vink joined Emmanuel Hospice as a nurse case manager. For a decade, she had worked in a residential setting caring for those with disabilities, caring for those often written off by society. After completing a nursing degree, Vink was ready to take her new skills and push her advocacy in a new direction.

“The families of people with special needs are very passionate,” Vink notes. “They’ve had to fight for their loved ones for years. They are that loved one’s first champion – and that can be a real barrier to calling in hospice. Families can be terrified because they think it means they’re giving up, and they’re wired never to give up.

“It’s my job to provide education, to reassure them hospice doesn’t mean we’re done fighting at all. It does mean their loved one can receive more support and more visits from a broader variety of caregivers – nurses, aides, spiritual caregivers, music therapists and more. It means they can get help 24/7 to manage symptoms and make their loved one more comfortable.”

Communication is critically important during end-of-life care – and doubly so, Vink says, when dealing with a patient with disabilities. Too often, these patients are ignored or overlooked, so Vink stresses the importance of clear, direct communication.

“When I sit down with a new patient and family, I make sure they know they are the priority,” she explains. “It’s not just ticking through a list of questions. I make sure it’s a discussion, and I allow extra time for questions.

“It’s important to make sure the patient is included, even if they are nonverbal. I talk to the patient directly, even though I know they might not be able to respond. How we treat each and every patient is so important. That speaks volumes to families, particularly those with disabilities.”

Vink notes Emmanuel Hospice supports in other ways, large and small, to care for those with disabilities, including:

• Procuring durable medical equipment: For individuals who need a new wheelchair, it might take a year or more to wade through the insurance process. Vink says Emmanuel can cut through the red tape much faster, securing a new wheelchair in a matter of days or an oxygen tank in the middle of the night.

• Providing grief support: Vink explains shifting out of champion mode can be difficult for loved ones of those with disabilities. “It can be a grieving process not to have the same goals in mind, to feel like you’re giving up” she says. “We can help with the grieving process while the patient is still with us.”

• Delivering individualized care: A lot of Emmanuel patients end up feeling like family, Vink notes. “You get to know people very well,” she says. “As a nonprofit, we have the time to do extra things, such as patient wishes or complementary therapies that provide comfort and create memories. We pay a lot of attention to detail.”

That was especially true for Stephen Sabo. His Emmanuel care team loved talking with him about two of his favorite things: cooking and fishing. They celebrated with him when his great-nephew was born, with a music therapist coming in to record Stephen’s heartbeat and set it to music to share with the little one he would never meet. Emmanuel nurses and aides laughed and joked and made him the center of attention until Stephen drew his last breath – and then they anointed his body with lavender and embraced his sister.

“I could not have asked for a better death for my brother,” recalls Mary Ann, wiping away the tears that still come readily four years later. “And I could not have done it without Emmanuel Hospice.”

For more information, call 616.719.0919 or visit EmmanuelHospice.org.