Does entering hospice mean you’ve ‘given up?’ Social worker provides better understanding | Expert opinion

Ever since Jimmy Carter and his family announced that he’d elected to enter hospice care, a lot of people have been asking me about my job as a social worker for a hospice care provider.

Here’s what I want you to know about hospice, a type of care that’s often misunderstood.

Hospice is a type of care, not a place.

Hospice patients have varying medical needs that require a team approach. Social workers, nurses, aides, chaplains, and volunteers work together to provide specific services. Together, we enable our patients to live their final days with dignity, and to spend their time attending to the things that matter to them, like their children and grandchildren.

We tend to their physical health needs, as well as their emotional and spiritual needs. The hospice team will help with bathing, administering medication, wound care, companionship, and more.

» READ MORE: Why don’t more people of color receive end-of-life care?

Care is often delivered at a patient’s home, as is the case with the former president. It can also be delivered in a nursing home or long-term care facility.

Hospice is for patients who have received a prognosis from their doctor that estimates they have six months or less to live. This doesn’t mean the patient is going to die in the next six months — it simply means that he or she has a condition that makes dying a realistic possibility.

Many families who use hospice care say they wish they had known about it earlier because they needed the help much sooner. Research has shown that hospice can increase both the quality of life and how long a patient lives. Families who receive hospice near the very end — just a few days to a week — have a harder time adjusting during the bereavement period than those whose loved one received hospice care for weeks or months before their death. Many experts believe two to three months of hospice care is optimal.

No. Because of this false belief, patients are sometimes reluctant to enter hospice — especially those still coming to terms with their own mortality. Family members sometimes fear that accepting hospice is a form of abandonment.

Some don’t want to hear the word “hospice” because they don’t want their loved one to realize death might be near. Others worry that a loved one receiving hospice care will die alone or surrounded only by their hospice caregivers. That’s not true — family members are welcome and encouraged. Our goal is that no one dies alone.

No. Hospice care is designed to support patients for however long they have, so long as the physician believes that the prognosis hasn’t changed. Hospice care focuses on quality of life, allowing patients to live their remaining days more fully.

Many people begin hospice in their very last days and miss out on the help it can offer over the preceding weeks; nearly 1 million Americans who may be eligible for hospice die each year without using it.

I’ve seen how much families struggle with the decision to move to hospice care, and I understand why. I’ve also seen the considerable good that hospice can do, and how much the right support can help to ease the pain of the end of life for patients and their loved ones.

I urge everyone to plan ahead like the Carter family has for end-of-life care. You do not have to face these difficult days alone. I’m proud that it’s my job as a social worker to help families navigate such times.

Nicole Shear is a social worker at Crossroads Hospice & Palliative Care in Plymouth Meeting.