spotify pixel

Religion and hospice: A cautionary experience – Susan Fallon McCann

mccann-gray

In 1939, Vernon L. “Bill” Bowman (left) joined the Royal Canadian Air Force and for the next two years flew fighter missions with the RCAF and the British Royal Air Force. After America’s declaration of war, he transferred to the U.S. Army Air Force and was shot down Aug. 23, 1944, then spent nine months in Stalag Luft 1 prison camp in Barth, Germany.

He’s pictured late in life with his son, Vice Admiral Michael Bowman, USN, (center), and grandson, Cmdr. Geoffrey Bowman, USN. The photo when published originally was titled “Three Generations of Fly Boys.”

Can you believe they believe this crap?” whispered my beloved, freethinking father. Unfortunately, my father’s “whisper” was in fact a deeply resonant voice that rippled through rows of the Methodist church we were attending with my mother, an immensely sweet and deeply religious woman. Worse still, we were in the second row, my mother’s favored position.

The minister had just read a particularly ridiculous bible verse that offended my hearing-impaired but whip-smart dad. The minister looked momentarily startled. My mother looked dismayed. I was both amused and proud of my father, who though in his late 80s, sported a clear, highly intelligent mind.

I happily plunked down the modest amount to become a Lifetime Member of FFRF before this year’s convention in Portland began, and felt privileged to shake the hand of Annie Laurie Gaylor as I did so. I also thought, “My father would be proud.”

Here’s why. In 2005, my dad died of lung cancer that metastasized to the spine, and suffered in needless pain due to the “protocol” of the religiously backed hospice we had unwittingly become involved with during the final six weeks of his life. His experience has become my passion. 

Hospice is a caring and compassionate approach to death. But beware, freethinkers, not all hospices are created equal. We were automatically “linked” to this particular hospice at the advice of my father’s physician, a kind man and a family friend. Connected to the Missouri hospital where my father resided briefly, it seemed sensible to simply enroll with the recommended hospice when the end was near.

The problems began almost immediately. When the hospice case manager showed up at our home to enroll my father, she said, “Our chaplain will be happy to meet with you,” to which he responded, “No preachers.” The case manager persisted, “We ask only that he visit one time.” My dad’s response? “I don’t believe you heard me correctly — no preachers or no hospice.”

The woman was clearly taken aback, but duly marked the form “no spiritual support requested.”

Unfortunately, we found that the hospice workers assigned to my father’s case simply could not park their religion at the door. His pain was severe; he was 89 years old and quite pragmatically and emotionally ready to leave this particular veil of tears.

Nonetheless, when he asked, “I know you may not be able to answer this question, but based on my vital signs and the progression of my disease, can you give me a sense of how long I have?” the response was, “When the sweet Lord calls you home.”

My father was dismayed. I was furious. I met with the case manager outside our home and said, “If you do not observe my father’s wishes, we will find a different hospice.”

‘I’m not Dr. Kevorkian’

This hospice refused to give my father anything other than liquid morphine to control his pain, when a PCA (patient controlled analgesia) pump was clearly required. Their emphasis was on “keeping the patient conscious so that he can interact with loved ones.” I finally insisted that he be admitted to the hospital, where pain doctors immediately installed a pump.

But that’s not the end to this sad tale. In the last week of his life, when he had been transferred to a skilled nursing facility where PCA pumps were not allowed, my father asked to be placed in a deep state of unconsciousness, as much as permissible within the law. During overnight vigils, it was clear to me that the hospice organization, still in charge of his care, was not adequately controlling his pain.

I confronted the hospice doctor, who actually said to me, “This is not Oregon and I am not Dr. Kevorkian.” My reply? “Unless you follow my father’s written and signed wishes, my next call will be to an attorney.”

That comment suddenly spurred action that allowed my dad to die pain-free.

After his death, I was on a mission. I contacted the state licensing board in charge of hospice organizations throughout Missouri. I sent a detailed list of the occurrences — ways in which this facility had violated the concepts of the national hospice organization. Their response was swift. They flew a team of auditors to St. Joseph from Jefferson City and carried out an unannounced audit.

They pulled files of three patients (in an attempt to protect the anonymity of the complainant, though I’m sure said complainant was obvious.) The result? The hospice organization was cited on multiple counts and given three months to clean up its act or be closed. (It is still in operation and apparently in accord with national hospice concepts, which I am glad to know.)

One other vital point: I conferred with a doctor of mine who was on the board of Stanford Medical Center in California before taking action. He said to me, “Susan, it is vital that you pursue this case. The Religious Right are having an increasing impact on pain control of dying patients in this country.”

My mission now is to warn all who are considering hospice care themselves or on behalf of a loved one to carefully vet all hospice organizations in your area. You must ensure that their approach is medically sound, that they are sufficiently staffed, and, most important, that they are willing to conform to those of us who wish to die without God and also without pain.

My allegiance and respect are absolute for FFRF and its work to keep church and state separate. My decision to join as a Lifetime Member is a great privilege. I hope my experience can help inform and assist other members.

 

Susan Fallon McCann lives in Fountain Hills, Ariz., where she is a business management and communications professional.

Freedom From Religion Foundation