The value of Hospice care is shelter or rest
By Gail Paparian
For the Record Gazette
Before my husband Bill passed away, he was faced
with enormous medical and surgical problems. He was scheduled to have his
left leg amputated but none of the doctors and surgeons were optimistic. The
reality was he had only a ten percent chance of surviving the anesthetic.
By some miracle if he got through that, he was facing amputation of the
other leg. It was not a good prognosis. A friend had accompanied me when we
had taken Bill to Desert Hospital earlier that week. Having arrived in an
ambulance, Bill was on a gurney waiting to be admitted. I was out of earshot
when he was to have said to this friend, “It's been a heck of a good ride
but I think this train has come to its end.”
She didn't tell me about this until months later when she thought I was
ready to deal with it. Upon reflection, Bill would have said that. He fought
his way through World War II and was challenged with medical issues for many
years. He was singularly independent and, if it was possible, he allowed
himself to pass. He could have been saying something like, “Marines never
quit; they just fall back to a better position.” While I still miss him, his
better position was peace and no more pain.
While Bill was dealing with the issues at hand, so were my stepson and I. We
had talked to many helpful people in the hospital about what-ifs and what's
next. The grief counselor talked at length about what we would be facing if
Bill survived. For reasons I still don't understand, the moment the grief
counselor mentioned hospice; I clicked off the audio to my brain. Hospice to
me was always the few days before death. As it turned out, I was incorrect.
Usually when Betty DeSantis and I get together, we talk about land use,
planning, governance and most things political. We oft times agree on
general tenets, but just as often do not agree on specific issues. We will
listen to each other with respect, then go away, determined that each one of
us was right! There are no harsh words; just the reality and gratefulness
that we are blessed to live in a society where we are each allowed to think
and speak our own minds.
Betty is about to retire from fours years of volunteering her service to the
Banning Planning Commission. She has given the position of chair her all.
She is not without political experience, as she served on the city council
and was mayor of her beloved Westlake Village.
What do people do after
they've turn 70 Š not what Betty DeSantis has done Š she's leaving her
part-time job to take on the full-time position admission's manager for
Vitas Hospice Š a nationally known provider of hospice care.
“Why are you taking on such a stress filled job at
your age,” I asked her recently. “Hospice provides palliative, or comfort
care,” she said. “When you can bring pain management to the patient and I
know I have helped the family, I feel better.”
DeSantis has had a distinguished career in nursing
and shows no signs of slowing down. She founded schools of nursing at a
hospital and university programs in Honduras. Upon her return to the United
States, she came to California to work on the Peace Corps program. As she
was involved in that, the Dean of the School of Nursing at UCLA offered her
a teaching position; which she accepted.
John and Betty were married, raised their two
daughters, and she continued to participated in the education of registered
nurses. Betty and her husband John moved to Banning in 2003. Westlake
Village's loss is certainly Banning's gain.
DeSantis' retirement to Sun Lakes was short lived.
“I've worked all my life,” she said and retirement was getting boring. I
felt lazy and tired.”
While it does put one on an emotion roller
coaster, DeSantis found the work for hospice new and rewarding. While she
admitted to some of her acute care skills being a little rusty, her
assessment skills were excellent. This made her an ideal candidate as an
admission's nurse, where she told me her typical admission interview takes
about four hours.
A person on hospice can stay at home and be
treated or be admitted to another facility. It is usually up to the patient
and the patient's family. She said that some doctors have trouble giving up;
as the oath they take is to cure. It is difficult for some to say there are
no more curative means available.
It then falls on the shoulders of the nurse,
DeSantis explained, to have the family and the doctor agree on the best care
for the patient. It is also important for family members to perform
investigations about hospice. Then, with all people better informed, a
quality of life decision is easier to arrive at. Without a physician's
signature, one cannot be admitted to hospice; which is usually covered by
Medicare and most insurance policies.
Here's where my personal myth about hospice was
transformed into a fact. I discovered that there may no longer be a cure for
a patient, but there can be comfort care for the patient (easing of pain is
the first thing that comes to mind) and more peace for the family.
My first emotion, even though I realized Bill was
quite ill, was denial. My heart ruled my head. DeSantis confirmed that this
is a usual state; mainly for families of the patient. “Each case is
individual,” DeSantis said. “There are a different set of dynamics in each
case.” Usually, when the family realizes there are no more curative options,
they recognize the need for palliative care.
I asked DeSantis how she handles the emotions she
must go through dealing with death on a regular basis. “Of course I cry,”
she said. “Besides,” she admitted, “I'm Irish.”
I have had friends who have been the recipients of
hospice. I have also had friends whose loved one has been the patient. In
all cases I observed, the patient and the family was better off with hospice
care. Sometimes the wait is only a few days. Often it leads to months. There
is routine care and continuous care where care is given until the symptom is
under control.
Usually there is a team of physicians, nurses,
social workers, counselors; hospice certified nursing assistants, clergy,
therapists and volunteers (plus the family).
I will have to remember, for myself and my loved
ones, if there are no longer curative options; the comfort care of hospice
is available. When my time comes, I hope someone like Betty DeSantis is
around.
At 73, I asked DeSantis how long she intended to
work. “Who knows,” she said, “when I grow up, I might think about retiring.”
(Gail Paparian, a Banning resident for nearly
six years, has served on Banning (and Riverside County) commissions and
committees. She currently is on the following boards: Community Blood Bank,
San Gorgonio Pass Rotary, San Gorgonio Pass Boys and Girls Club and a member
of Banning Economic Development Committee.
Gail and her husband Bill Paparian created a
service called Writing Solutions in 1996. Gail has also written for a number
of local and national magazines and newspapers over the years. Currently,
she provides public relations consulting services for the Banning Unified
School District. She can be reached at
info@WritingSolutions.com.)
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