Fear of Hospice: 5 Ways to Help Ease the Unknown

Starting hospice can feel overwhelming.

Patients and families may be processing a new diagnosis, a changing prognosis, physical and emotional turmoil, and difficult decisions about what comes next.

For many people the word hospice brings fear.

This fear often comes from the same place, the unknown.

We like to know what happens next. A terminal illness takes away much of our sense of certainty.

Here are five ways hospice providers can replace uncertainty with understanding.

1. Listen for Family Fears

Don’t begin with a list of services. Begin with the patient.

Ask what they understand about hospice. Ask what concerns them. Ask what they have heard from friends, family, physicians, nurses, or previous experiences.

You may hear:

“Does hospice mean we’re giving up?”

“Will I lose my doctor?”

“Can I stay at home?”

“What happens if my symptoms get worse?”

“Who’s going to come into my house?”

These questions matter.

A family that doesn’t understand hospice often imagine a situation far more confusing and frightening than the care they will actually receive.

Listen first. Hear them. Then educate.

2. Explain What Happens Next

One of the best ways to reduce fear is to lay out the next few steps in a way that is clear, ordered, and predictable.

If a patient is leaving a hospital, the hospice team can help coordinate the transition to wherever the patient calls home. Depending on the patient’s needs and plan of care, this may include arranging necessary DME,  medications, and the initial hospice visit.

Patients and families should also understand that they have choices.

They can ask questions. They can learn about different hospice providers. They can choose the organization they believe best fits their needs.

Don’t overwhelm families by explaining everything that could happen over the next six months.

Start with today.

Then explain tomorrow.

One step at a time.

3. Introduce the Team Before the Team Arrives

Hospice suddenly introduces unfamiliar people into a family’s life.

Explain who they are and why they’ll be there.

The hospice interdisciplinary team may include:

• Physicians, NPs, PAs
• Registered nurses
• Hospice aides
• Social workers
• Spiritual care professionals
• Volunteers
• Bereavement support
• Therapists and other professionals when included in the plan of care

Not every patient needs every service at the same frequency. And some services may be refused.

Hospice care must be personalized and individualized. The team develops a plan based on the patient’s needs, goals, symptoms, and preferences, and that plan changes as those needs change.

Introducing and explaining who are the different people who may be in their lives and why, helps reduce friction and turns the unknown into a plan..

4. Explain What Hospice Is Trying to Accomplish

Hospice isn’t about counting down. It’s about making the days count, as best as possible.

The goal is to help patients live as comfortably and fully as possible while supporting the people who care for them.

That can mean managing pain and other symptoms. It can mean providing equipment and supplies related to the terminal illness. It can mean helping caregivers understand what is happening and whom to call when something changes.

It can also mean avoiding unwanted trips to the emergency room or hospital when the patient’s goals are better served by receiving care where they live.

The plan belongs to the patient. When families understand that, hospice begins to feel less like something happening to them and more like a team working with them.

5. Replace the Unknown With a Plan

No hospice provider can tell a patient or family exactly what the future will bring and no one should pretend otherwise.

What we can tell them is that they won’t have to face it alone. They will have a care team. They will have a plan. They will have people to call when symptoms change or have questions. And as the patient’s needs change, the plan can change with them.

That knowledge matters.

Information doesn’t remove every fear, but it helps.

Some of the most important work in hospice happens before the first clinical visit.

It happens when someone sits with a frightened patient or family, listens to what they’re worried about, and helps them understand what comes next.