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Looking Back on Dad’s Last Days
by ANNA President Suzann VanBuskirk
A
gentle breeze filled the room, sheer curtains billowing at my open
bedroom window. It was a beautiful fall Saturday morning in 1996. I
have always loved this season of the year with its shorter days,
brighter sunshine, crisp air, and autumn leaves. From the window, I
looked back at my father lying peacefully in the bed. He had ended his
life journey on earth just a few hours earlier and had taken his last
breath. My mother, sister and I bathed Dad and put on a fresh set of
pajamas and pulled up the covers below his chin. With the oxygen
concentrator turned off for the first time in a week, I was relieved to
hear normal sounds of birds singing and children playing in the
neighborhood. Muffled voices floated from the dining room as my family
ate a light breakfast and waited for the arrival of funeral home
representatives.
Remembering an Anniversary
As
the anniversary of my father’s death draws near this year, I remember
the scene vividly and all that led up to the decision that my mother, 3
sisters and 1 brother made to stop hemodialysis. Diagnosed at the age
of 68 with ESRD as a result of poorly controlled hypertension and gouty
arthritis, Dad was the typical male born during the depression: strong
work ethic, reluctant to show weakness or illness, and rarely sought
routine medical care. Except for a 5 year period spent with my mother
in the South when they were first married, he was born, raised and a
life-long resident in a rural Ohio community where there was limited
medical care and no county hospital. The closest hospital was at least
30 miles away.
When Dad started on outpatient hemodialysis, my family relied on my 16
years of experience as a nephrology nurse to help them navigate through
the system. Together we arranged for his treatment and we supported my
mother as she became his primary caregiver. Over the next 2 years,
Dad’s health declined and his ESRD was complicated by vasculitis and a
cerebrovascular accident. Following several lengthy hospitalizations
including rehabilitation, my father became more difficult for my mother
to manage by herself. He hated being in the hospital and nursing home,
so following a candid discussion with his nephrologist, I arranged for
my parents to relocate 800 miles into my home in Maryland so I could
provide more support during his final days. My husband and I built a
wheelchair ramp so mother could easily wheel him to the car and
transport him to the local dialysis clinic. My family made the decision
that we would not allow Dad to be admitted into hospital or nursing
home but we would continue to transport him by car to dialysis as long
as we could. Within a few short weeks following relocation, his
physical and mental health deteriorated, transferring him into and out
of the car became increasingly difficult, and he became frustrated by
long waits in the dialysis clinic lobby.
Another candid discussion with Dad’s new nephrologists allowed our
family to make the decision to stop dialysis. It was difficult for us
to explain to him that he was not going to continue with dialysis. I
will always remember his words, “But I’m not ready to die.” I remain
haunted by my response as I spoke about his mind not being ready, but
his body was, and I reminded him of his contempt of further
hospitalizations.
Stopping Dialysis Was Just the Beginning
At
the time, I thought the hard part was over when the decision to stop
dialysis was made. However, I was not prepared for the physical and
emotional aspects of the dying process even though I had 20 years of
experience as an RN working with patients who were dying and had
first-hand experience earlier in the year with my father-in-law, who
died in my home, 6 hours after home hospice was initiated. I did not
seek hospice care for Dad, a decision that I regret. The nephrologist
offered to assist me in any way, but I only requested that oxygen be
ordered.
My father’s last dialysis treatment was on a Saturday; on Monday, we
had a delicious “last dinner” of filet mignon and potatoes that he
gobbled up. He began to drift away from us on Wednesday and he died the
following Saturday. In the end I felt he was struggling; my mother,
sister and I were weary and tired as we cared for his physical, mental
and spiritual needs – feeling guilty as we prayed for the “end” to come.
Promoting the Importance of End-Of-Life Care
I
tell my Dad’s story now to share with readers the importance of the
work that has been accomplished in the past 5 years to increase the
awareness within the community of nephrology caregivers of the need for
optimum end-of-life care. Much of this work began in 2000 with the
Promoting Excellence in End-of-Life Care ESRD Workgroup, chaired by
Alvin Moss, MD, Director of the West Virginia University Center of
Health Ethics and Law and a nephrologists at West Virginia University
School of Medicine, and included a workgroup consisting of 23 members,
including nurses, nephrologists, social workers, administrators and
ESRD patients. The workgroup completed its charge in October 2001 by
making specific recommendations to ESRD stakeholders to take action to
improve the quality of palliative care provided to ESRD patients and
families. I am extremely grateful to the work of MaryRose Kott, Chair
of ANNA’s Ethics Committee 2004-06 and her committee for responding to
the “call” to action. “Techniques to Facilitate Discussion for Advanced
Care Planning” is the first educational module in a series aimed at
nephrology nurses who are faced with assisting patients and families
with end-of-life decision-making. This module will be available soon on
the ANNA website at no charge to the public and will also be
distributed to ANNA chapters.
For the rest of my life, I will think about the final days of my
father’s life and wonder if there were comfort measures that could have
been provided to reduce his physical pain and my family’s emotional
anxiety, if there had been an increased awareness within the nephrology
community. However I am hopeful that by sharing my story I will raise
awareness of the need for nephrology nurses to learn more about the
important work that ANNA is contributing toward promoting excellence in
end-of-life care.
Suzann VanBuskirk, BSN, RN, CNN
ANNA President
Member, Baltimore Chapter
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