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.
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!
Prior to retiring from the world of Hospice ten years ago…allow me to share that you are doing the world a tremendous help by your positive testimony regarding the myths and facts of hospice care.One sidebar is that people reading this generally think that a pt has to go to a hospice location for care. You disspelled that so clearly that people may now ask where can hospice care be performed…and they can answer “anywhere” there is a need and a want. for example, I recall helping a gentleman receive hospice care when he was homeless and received “at home care-giving” by his friends until he passed. AS difficult as it sounds, my 30+ years working with the elderly and folks in dire healthcare needs, was by far the most rewarding experience with which I was blessed…..Blessings to you, Jim Kolf
Jim, you are one of the ‘saints’ my daughter refers to. What a high calling … and thank you for your comment.
My mom is 12 years into her Alzheimer’s diagnosis. Last March she had a fall and lost speech, ability to feed herself and mobility. My sister and I called Napa County Hospice and they came to assess her. They were wonderful and highly respectful. Although my mom didn’t qualify for hospice care, they said having her assessed made it easier when she was in significant decline. It was nice to know that she is “on their radar” and they will be there when we need them. An update on my mom: she has recovered ability to feed herself, lots of speech, and mobility. Even 12 years into this diagnosis she has her sweet personality and funny sense of humor. All of this is to say that you can contact hospice even when there isn’t a specific timeline known for an illness. Thanks for all you do, Marlys. I love reading your posts!
Good to know that hospice will assess a patient in advance and keep them on their radar. Excellent input, Elizabeth – thank you.
Yes, hospice is great and the truth about it needs to be spread.
Thanks, for helping to do that.
How, else can we do that?
One way being more comfortable talking about our medical experiences
to each other, whether that’s cancer treatment, hospice, etc.
I often wonder how things like that work and can’t
really find out if others don’t share their experiences.
Often I don’t know what to expect, or how something works,
until I actually have to experience it, that’s where preconceived
notions (sometimes no knowledge at all) can set in.
eg: something had no knowledge of until thrown head first into
it ‘adult guardianship’. (both my elderly parents) which is way
off topic, but it is also something others need to be made aware
I think you’re right, Kim – one of the best ways to spread the truth is to become comfortable talking about our medical, elder care, hospice and other experiences. Most of us do what you did, which is to get thrown headfirst into something where we learn about it as we stumble along. Thank you for your comments.
You have a wonderful gift for explaining hospice care and what a blessing it was for you and can be for others. Thanks You!
It was definitely a godsend to our family, Marie. Thank you for your kind words.