Hospice Care, Part 1: Misperceptions About What Hospice Is

“Hospice” is an extremely emotionally-charged word.

It is something we’d prefer never to think about . . .  let alone talk about with loved ones . . . or anyone.

Through personally experiencing and observing hospice care for each of my parents, I slowly overcame my fears about hospice. And looking back now, I feel gratitude for the compassionate and comprehensive services provided by the hospice team for my elderly parents.

Before my first experience with hospice in 2005, these were a few of my preconceived ideas about what hospice meant:

• Putting someone on hospice care means their death is imminent. I was shocked by the suggestion of the board and care administrator that my dad be evaluated for hospice, since he didn’t have a life-threatening physical illness.   Wrong. A person doesn’t have to have cancer or AIDS to go on hospice care.  In order to qualify, a patient must have certification from two physicians that they have less than six months to live if his or her disease runs its natural course.  However, some people live for years while on hospice care. My father was only on hospice for a few months, but my mother received hospice care for slightly over two years.  Hospice services are reviewed every six months and renewed as long as it is medically called for.

• Hospice is a separate place the patient must move to in order to receive care. I thought I would have to move my father from his board and care facility to a another place where hospice care was provided.  I didn’t know exactly what or where it was, but that was my belief.  Wrong. Care can be provided in a patient’s home, hospitals, nursing homes, skilled nursing facilities or board and cares.  Yes, free-standing hospice centers are one alternative, but that is not the only location where a patient can receive end-of-life care.  The board and care my father was living in had a hospice waiver, so he continued living right where he was while receiving hospice care until he passed away.

• Once they’re on hospice, the patient cannot go to a hospital for any medical treatment. On the one hand, a major positive in having a loved one on hospice is that you are preventing the physical and/or mental anguish a hospital visit can create for a senior.  On the other hand, I felt like I was “signing my father’s death certificate” by putting him on hospice.  Wrong. In general, the hospice philosophy is to provide comfort to the patient and not to perform medical treatments to cure an illness.  However, the hospice nurses explained to me that if my father or mother needed to go to the hospital for any reason, I would simply take them off hospice service before they went to the hospital, and then I could re-enroll them for hospice once they came out of the hospital. Hospitalization never occurred while either of my parents were on hospice, but it is an option I didn’t know existed.

• Hospice care is only for the patient. Wrong — very wrong. While the hospice care team is patient-centered, the care extends to the patient’s immediate family, even for up to a year after the loved one’s death. After my father died, the hospice social worker kept in touch with me by phone and mail. The company offered bereavement counseling, support groups and workshops. All of these services are free. I didn’t feel I needed grief counseling from them at first, but as the one-year anniversary of my dad’s death approached, I decided to meet with the social worker that had kept in touch with me. This one-time counseling session helped me get some answers to questions that were weighing on my mind about my dad’s final hours. It was very valuable and helped me move along in the grieving process.

In future posts about the hospice care my parents received, I hope to allay the worries or misconceptions you may have about hospice care. And by sharing more, I hope it will encourage you to consider (and even welcome) hospice care for your aging parents if and when appropriate.

When you hear the word “hospice,” what do you think of?

Do you have other questions about hospice care you’d like me to answer?

Please write them in the comment section below or use the Contact form above to send them to me privately.