Questions about hospice care, answered

Defining hospice care

Hospice care provides humane and compassionate care for people in the final phases of incurable disease so that they may live as fully and comfortably as possible. The hospice philosophy accepts death as the final stage of life. Hospice care treats the whole person, working to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered — it includes the patient and the family in making decisions. Sometimes a doctor, patient, or family member might worry that hospice means “giving up.” This is not true. The hope of hospice is making the best of each day during advanced illness.

There can sometimes be confusion surrounding the difference between “hospice” and “palliative care.” The terms are not synonymous. All hospice care is palliative care, but not all palliative care is hospice.

Palliative care is an umbrella term; it provides an extra layer of support and care for patients diagnosed with a serious illness at any stage of that illness. Palliative care patients can continue to pursue curative treatment; in fact, palliative care is often used to alleviate physical, emotional, and spiritual side effects from those treatments.

People who have been diagnosed with six months or less to live become eligible for hospice. It is still focused on pain and symptom relief, and adds the aide of chaplains, volunteers, and bereavement specialists in addition to nurses, doctors, and social workers. The over-arching goal is comfort. Hospice may occur in the home, assisted living facilities, nursing homes, or at an in-patient hospice.

What does hospice care provide?

· Pain and symptom control
· Home care and inpatient care
· Spiritual care
· Family meetings
· Coordination of care
· Respite care
· Bereavement care
· Guidance through the dying process

The blessings of hospice

It may be helpful to hear from those who have experience hospice care themselves, either as a family member, part of the care team, or firsthand. There are many accounts available online, but here are a few:

“The hospice gives a person the opportunity to die with dignity. It provides care, help, and as much comfort as possible… When the patient enters the hospice, an entire team sets to work to meet the family’s needs — a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator, and of course, the volunteers.”
–Art Buchwald, A Humorist Illuminates the Blessings of Hospice

“The Hospice people come to me, and they are kind and caring. I don’t have to put on a strong face with them. I can talk honestly about life, death, pain, and pain management. It is not the same with people in the ‘normal world’ who are uncomfortable with such topics and sad to see us struggling to talk and walk. The caregivers come in droves… A truly wonderful lady, Regina Gerald, comes twice a week to scrub my hair and body. I am not used to such attention, and have never been so clean!”
–Connie Lawn, My Journey With Hospice Care

“The entire team — all are excellent. They really care for people. The nurse, Eileen, takes my blood pressure, checks my whole body, arranges my medicines, gives me the supplies I need, calls the doctor if there’s a problem. Sometimes I feel very depressed, but she and Henry make me feel better… I had been in and out of the hospital, and they finally told me not to come back. But when I got with this agency, I didn’t have to go to the hospital no more.”
–Mercedes Perazzo, In Hospice, Care and Comfort as Life Wanes

“In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.”
–Dr. BJ Miller, How to Prepare for a Good Death

Originally published at Caring Connection: An Online Community for Patients & Families Facing Cancer, a private blog community for patients at Joan Karnell Supportive Care Center, Abramson Cancer Center at Pennsylvania Hospital in Philadelphia.