Hospice Care: What It Really Means and Why It Matters

Few words can feel as frightening or final as “hospice.” However, much of that fear stems from a misunderstanding of what hospice care truly means. Southwest General Hospice team members Jenny Schumacher, a hospice nurse, and Autumn Gorgone-Fleming, a hospice liaison, help set the record straight and explain why hospice is ultimately about living, not dying.

What Hospice Really Is

Hospice is not one specific place. It is a philosophy of care focused on comfort, dignity and quality of life. While some patients receive hospice care in a dedicated center, many receive it wherever they call home. “A lot of people have a misconception that it's a place where they have to go,” Schumacher explains. “With that in mind, we really strive for a place of comfort.” Patients typically enter hospice when they have a life-limiting condition and no longer wish to pursue aggressive treatment or when treatment is no longer working.

The goal, Schumacher emphasizes, is to help patients live as fully and comfortably as possible. “It's really centered on life care, not death care,” she adds.

Hospice Can Happen at Home

One of the most common myths is that hospice requires leaving home. In reality, the opposite is usually true. “That is a big misconception,” states Gorgone-Fleming. “Our goal is to try to keep patients in their home.”

Hospice can take place in homes, nursing homes, assisted living facilities or residential centers, such as the 10-bed Thomas P. Perciak Family Residential Hospice, in Strongsville. Yet, home is what most families want, and most patients are cared for in that environment.

Who Is Hospice For?

Hospice is generally intended for patients with a life-limiting illness who, if the illness follows its expected course, may have about six months or less to live. However, that does not mean care automatically ends after six months. “Patients can live sometimes beyond six months, and we definitely do see that,” Gorgone-Fleming notes. A nurse practitioner regularly reevaluates patients, and care can be extended or transitioned to a palliative care program based on their condition.

Palliative care is related to hospice, but not the same thing. Rather, it focuses on relieving pain, symptoms and stress for people living with a serious illness. Unlike hospice care, it can be provided alongside treatments intended to cure or manage the disease. This makes it an option for patients at any stage of illness, not only those nearing the end of life.

Clearing Up the Myths

Another common misconception is that patients must be on a “do-not-resuscitate” order, often called a DNR, to enter hospice. This is not true. Patients can enter hospice while still choosing lifesaving measures, such as CPR, if their heart stops. “They can actually come into hospice being a full code,” Schumacher explains. The team discusses a patient's code status during the initial assessment, and it is never rushed or forced.

These are deeply personal decisions, and the hospice team is careful to meet families where they are emotionally. Because so much information is shared at that first meeting, the conversation can feel overwhelming. That is often where the social worker steps in, helping patients and families talk through their goals.

If a patient wishes to avoid further hospitalization and remain comfortable at home, the team will gently walk them through what those choices actually look like, dispelling the dramatic portrayals many people have seen on television. The result is a decision rooted in understanding rather than fear.

A Whole-Team Approach

Hospice care extends far beyond medical treatment. The team includes a medical director, nurses, home health aides, social workers, spiritual care providers and volunteers. Families also receive medical equipment, medications and supplies delivered to the home along with access to 24/7 on-call support.

Schumacher encourages families to create a calm setting: soft music, low lighting and a peaceful space for their loved one. The goal, she explains, is to surround the patient with as much peace and ease as possible.

Living, Not Giving Up

Perhaps the most important message both women share is that choosing hospice is not giving up. “It's actually not giving up. It's just choosing a different way to live,” describes Gorgone-Fleming. “It takes a lot of courage for someone to choose comfort.”

Time and again, families come to the same realization. “I've never had a patient tell me, ‘I wish I would have had one more radiation treatment,’” Gorgone-Fleming shares. “They often will say, ‘I truly wish we would have started sooner.’”

As Schumacher puts it: “Hospice is all about living. Living with dignity, respect and comfort with the time that you have left.”

To learn more about hospice as well as palliative care at Southwest General, visit swgeneral.com.