Hospice care: 4 myths and 4 awesome things you may not know

We were at my husband’s final oncology consultation—the one where he said, No more chemo—at which point the oncologist said he’d like to make a referral to hospice. I was incredulous. Seriously? Does Gary look like he’s on his last legs?! 

“Up until this point,” the oncologist said to my husband, “all the care has been focused on you.” He pointed at me: “But who’s taking care of her?” My eyes welled up. I’d never considered that thought.

Photo by Conner Baker on Unsplash

I had a general idea what hospice care entailed, but it seems I had bought into a few common myths:

1. Hospice care is for people who have just a few days/weeks of life left.

Too often people wait for a crisis before getting hospice involved, but it doesn’t have to be that way. Hospice care operates on a team-oriented approach, seeking to manage symptoms and provide comfort for people facing a life-limiting illness or injury.

2. Patients enroll in hospice care to die.

Hospice care does not speed up death (patients can enroll and un-enroll). In his book, Being Mortal, author and surgeon Atul Gawande cites studies that prove length of life is oftentimes extended for those who stop additional drastic surgeries or treatments. And it is often a good quality of life.

3. Hospice means the patient no longer has a say in his/her care.

Gary’s needs and wants were a priority as the hospice team built an individualized plan to manage pain and symptoms, and provide quality of life. And, of course, the patient’s end-of-life wishes were respected.

4. Choosing hospice means giving up hope.

For us, enrolling in hospice care meant stepping into a new phase of the cancer journey — a team-centered, pain-managed, peaceful season with boatloads of hope as we spent quality time together those last few months of Gary’s life.

Here are 4 awesome things about hospice care, some of which I hadn’t realized beforehand:

1. Competent medical care is available 24/7.

We were assigned a hospice field nurse who scheduled regular visits. She provided her cell phone number for any questions or concerns during her work day, and an after-hours phone number was given for questions and middle-of-the-night emergencies.

Professional services also included a home health aide to assist with personal needs and bathing, and a massage therapist stopped by to work on Gary’s lymphedema-swollen legs.

The hospice program in my hometown includes a beautiful, home-like setting — Hospice House — that welcomes family members and friends should the patient need round-the-clock medical attention: private rooms with baths, and a hide-a-bed for overnight accommodations for the caregiver. A common dining area was stocked with coffee, tea and fresh-baked cookies, and a common living room featured overstuffed chairs facing the stone fireplace. Gary checked into Hospice House twice: once, to become medically stabilized, and later for his final few days as his medical needs became more than I was able to manage at home.

2. The caregiver is supported along with the patient.

For basic training with minor procedures — in my case, keeping tubes flushed, bags drained, dressings replaced, and once, all-night duty administering meds through a PICC line — our field nurse was my instructor. For counseling or hard conversations, a social worker or chaplain is available, and trained volunteers provide respite care if/when the caregiver needs a break. Bereavement support rounds out the package.

3. Equipment and meds are provided.

We eventually had a hospital bed, tray table, commode, morphine pump, oxygen tank, and walker at home. And when I was no longer able to leave Gary alone, pain meds were delivered to our front door.

4. Hospice care helps relieve the financial pressure.

From a practical standpoint, hospice care is considerably less costly than expensive and radical treatment or surgery. Generally speaking, hospice care is covered under the Medicare hospice benefit, Medicaid, and most private insurance plans. In addition, there may be community-based programs that cover costs for patients who don’t have the ability to pay.

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This from the American Hospice Foundation:

That hospice remains a mystery is due in part to our society’s resistance to discuss matters related to death.

Our daughter, Summer, who spent the final weeks of her father’s life with us, had this observation about our hospice team:

I was incredibly impressed that they were available for us as we were caring for Dad. The doctors and nurses were very compassionate people. Who does that? Who signs up to take care of patients that will all die? These people are saints.

And this is what I wish I’d known that day the oncologist asked if we wanted a referral to hospice care.

P.S. If you know of someone who needs a clearer understanding of what hospice care involves, please share, tweet or pin!