When Should You Call Hospice?
Are you afraid to call for hospice care when someone you love is very ill?
We will all die.
And if we are fortunate, we will have enough of a heads-up to make some good decisions along the way.
I had a dear friend who might have benefited greatly from what hospice could have brought to her and her terminally ill husband, but she was afraid to begin the process.
Her misgivings were based in part on a prior unfortunate experience when her father had reached out for hospice care and ended up dying.
Exactly! That is the expected outcome, not only for hospice patients but for every one of us.
But my friend could not entertain the idea that the fullness of life holds both joy and sorrow, both life and death.
And by refusing hospice care because of her fear of sorrow and death, she denied herself and her husband the fullness of life at a time when they needed it the most.
Why hospice is often avoided
Her decision not to seek hospice care, like that of many people I meet, was based primarily on one thing.
Fear.
Some of her fears were that choosing hospice meant that she had given up, that her faith just wasn’t strong enough, and that people would judge her.
She wasn’t at all ready to lose her beloved husband, and signing up for hospice care felt like giving up.
I have been on both sides of hospice care—as a nurse supporting families at the end of life and as a family member.
I lost my father and later my husband, both in the arms of good hospice care.
I can attest to the life-giving power of a level of care not available to the general population.
What hospice doesn’t tell you
There are things that hospice doesn’t tell you. At least not adequately enough in the beginning so that you can choose with understanding and clarity.
Although you can find statistics on the average amount of time someone lives after beginning hospice care, those numbers are skewed.
I read a 2007 report by the National Hospice and Palliative Care Organization (NHPCO) in which patients with certain terminal diseases who chose hospice lived an average of 29 days.
This results in statistics that suggest that most patients die within days of the start of hospice care.
Yet hospice care is available to anyone with a life expectancy of six months. And because the level of this care differs from routine nursing, it is possible to outlive the initial expectations.
Waiting for the last moments before starting hospice care can rob you and your loved one of tender support for weeks or months.
Hospice as a medical specialty
Most of our doctors today don’t explain hospice early in the course of a life-threatening illness, and I can understand why.
When they chose medicine as a career, they committed their life (and money and soul) to helping people live.
Some also have personal religious convictions that strengthen this commitment, making it difficult for them to accept the inevitability of death and offer hospice care.
A few practitioners choose to go into ‘palliative medicine’, which is a path that eventually leads to hospice care. Still, not nearly enough medical students are helped to understand the kind of care that brings quality of life to terminally ill patients.
Their oath to “do no harm” implies to them that accepting death is ‘harmful’.
I’m afraid I have to disagree!
Bereavement support
Research has shown that next of kin who get support in the year following the loss of a loved one use fewer medical resources in their journey through grief.
Bereavement services through hospice are covered by insurance for an entire year to support loved ones.
I did not know about this when my father died. Of course, that was forty years ago and perhaps wasn’t available then.
My, how time flies!
At that time, I could have used some skilled intervention to get through the following year. If you are next of kin to someone receiving hospice benefits, be sure to ask about the availability of bereavement support.
Hospice support to fully live
Hospice isn’t just for those last few hours or days of life.
One of my favorite stories is of a woman beginning hospice care who could no longer drive. Her sweetheart lived about 20 miles away and could not drive either.
Hospice arranged for a volunteer driver to help her visit and be hugged by this significant person in her life.
Tell me this support didn’t extend her life in quality and longevity!
I often tell folks that hospice care is more about living than death.
Unless I get hit by a bus, I fully intend to sign up for hospice as soon as it is appropriate. I am committed to LIVE until I take my last breath.
By that, I mean more than just receiving comfort measures.
I want to access beauty in nature,
I want to connect with people I care about and receive hugs,
I want to be pain-free but not zonked!
I want to receive all the support available to me to live fully until I die.
The differences in standard medical care
Unfortunately, standard medical care has a vision that is a little different.
They would attach me to a machine in a room with the light on 24/7 and spend the bulk of their time filling in reports, taking vital signs, and following the rules of an institution.
That isn’t living. It is dying…before my last breath. I shall choose hospice care with a grateful heart…to live at home, to live with my animals and partner, to Live until I die.
When to ask about hospice
I have learned the hard way to bring the subject up and not wait for a doctor who hasn’t been trained to offer hospice sooner rather than later.
When my husband was in ICU with congestive heart failure, I didn’t wait for him to be transferred back to a nursing home.
I asked the doctor, “Is he hospice appropriate?”
A look of relief crossed the doctor’s face. “Yes, he is.”
It was a simple shift of emphasis and a bit of paperwork, and Micky returned home to enjoy his last can of beer, watch John Wayne, and die surrounded by the people who loved him.
This wouldn’t have happened if I hadn’t asked the question.
I shall include this in my instructions to my family as we continue conversations about the end of life.
If you are faced with such a decision, try to remember hospice is about living to the end, and is not about giving up.
Some of life’s questions are not as easy as others, but
TheReflectivePen considers them all.
