Prose & Comments: Helping when the end is near
By Deborah Grayson
Although my father died in a hospice program in Los Angeles eight years ago, it was not that experience that drew me to hospice’s compassionate end-of-life alternative to dying in a clinical setting. It was my training to be a registered dietician.
In that role, 15 years ago, I spent almost a year’s worth of rotations in various hospital departments. And even though I was at well-respected hospitals during this time, I witnessed the unfortunate results of choices that doctors, sometimes along with caregivers and families, unthinkingly make as a patient nears the end of life.
What I learned is that while hospitals are miraculous places to be if you’re going to get better, they’re often not set up to care for people who, unfortunately, are nearing the end of life. In their diligent effort to prolong life, hospitals at times seem to ignore the obvious and certain approach of death.
I saw a cancer patient, clearly near death, taken off to a chemotherapy treatment, during which he died. I was there when his wife arrived for her regular visit and was told what had transpired. Stunned, she was told to wait in his room until his body was returned. I waited with her.
I was listening when a doctor phoned distant family members to get their permission for an invasive procedure for their aunt, an elderly woman, curled on a gurney in a fetal position, demented, frightened and skeletally thin. He assured them that the treatment was necessary to keep her alive. Not having recently seen their aunt and so not understanding how ill she was, they agreed. The procedure was done and she died a few days later. I can still hear her feeble protests as she was wheeled away.
So I went to work for a hospice because it is everything the above isn’t.
Hospice is where the whole patient and the patient’s family are cared for with physical comfort and palliative care, and with emotional support and understanding of the goals.
Rather than a single doctor making medical decisions, a hospice-trained team of doctors, social workers, nurses, spiritual care counselors and even nutritionists (that’s where I come in) discuss each patient’s individual needs, offering choices as to how those needs can best be met with compassion and dignity as the end of life nears.
Rather than being robed in a generic, ill-fitting hospital gown with tubes entering and exiting their bodies, often leaving bruises and non-healing wounds and making patients so uncomfortable and inaccessible that family members can be afraid to get too near, the patient is at home, generally tube-free, dressed in their own clothing in a familiar bed — where study after study shows people want to be at the end of life, with loved ones as close as possible.
And, rather than hopeless, short-term life-prolonging treatments that often make the patient feel worse, timely hospice care can offer the dying a calm space and place to hold those all-important healing conversations with loved ones, along with the time to put affairs in order and make final wishes known. Patient, family and friends can have the priceless gift of peaceful closure.
I call my hospice co-workers “hospital refugees.”
All of us started our careers in hospitals. All of us saw what can happen there and we knew there must be something better, a more loving and natural way to leave life. All of us found that at hospice.
My co-workers are near-miraculous people—smart, dedicated, caring, yet realistic.
Not one of them does their job on “auto-pilot.” That’s because we know that each patient is special, each has a unique and important story, and each story gets to be told with the best ending we can manage.
