Humanities: Art, Language, and Spirituality in Health Care
A Gift Twice-Given is Truly Received
,,
Charles R. Nolan, MD
Medical Director, LIFE Care
−
Palliative Medicine and Hospice, Guadalupe Regional Medical Center, Seguin, Texas, USA
Key Words
Transplant, gift-of-life, cirrhosis, alcoholism, addiction, palliative care
Key Message
Transplant Nephrologist turned Palliative Care −
Hospice physician recounts personal experience in pal-
liative care of patients with end-stage liver disease vali-
dating his conviction that Palliative Care is not just for
dying patients.
A Gift Twice - Given is Truly Received
Today at Christmas mass, the Catholic priest’s hom-
ily was about giving and receiving gifts. Newly ordained,
his first assignment was in Albuquerque, NM. While
there, he learned of a Native American wisdom verse
which he translated as “A gift twice given is truly
received,” a more eloquent version of the popular “pay-
ing it forward”.I’m inspired to share my own Christmas
story about Gifts Re-Given and Truly Received.
I realize now that from my earliest days in medical
school, though I eventually specialized in Internal Med-
icine and Nephrology, I’d also embarked on a circui-
tous journey to becoming a Palliative Care − Hospice
physician. For over three decades as a transplant physi-
cian at an academic medical center, I’d witnessed
many miracles whereby critically-ill patients received
the “Gift of Life” in the form of an organ transplant.
However, I gradually came to understand that some-
thing crucial was missing in the treatment we offered.
The Transplant Team often did not provide truly suffi-
cient care for the many patients who didn’t survive
long enough to make it to transplant, those who liter-
ally “died waiting”. And of course, this profoundly
affected their families too. Regrettably, I was all-too-
often a coconspirator in the exclusively high-tech care
of patients who were too sick to survive a transplant, yet
unable to survive without one. That conundrum could
drag on for weeks and ultimately bankrupt the patient
and family both financially and emotionally. Such
heart-wrenching experiences led me to transition to a
second career in Palliative Care and Hospice.
A year and a half ago, I met a 45-year-old man with
cirrhosis due to alcoholic liver disease and hepatitis C.
JAL had recently been hospitalized with a life-threaten-
ing variceal hemorrhage. He was referred to our LIFE
(
Lifelong Intensive Family Emotional) Care − Pallia-
tive Care team to discuss beginning hospice. We met
with JAL and his devoted daughter for the first time at
his home. He described how he’d been a heavy drinker
since his teens, was still actively drinking, and had no
medical insurance; he said he had no hope of recovery.
We discussed the potential benefits of hospice. But I
also told him there was still hope of recovery. I outlined
a difficult journey he could embark upon. He could
work through to sobriety, apply for Social Security dis-
ability and so get insurance through Medicaid. If he
could achieve all this, I’d refer him to a Transplant
Center to be considered for a new liver. To the aston-
ishment of the team, JAL immediately accepted the
challenge. He stopped drinking, began to regularly
attend church and AA meetings − and is now 18
months clean and sober. In short, he became the
model patient, returning regularly to the Palliative
Care clinic with a meticulous log of his daily weights
and blood pressure readings and strictly adhering to
the diet and medication regimen I prescribed. Though
still terminally-ill with decompensated cirrhosis, his lab
values (MELD score), overall health and physical
Resubmission of revised manuscript with revisions suggested
by reviewer.
“This research received no specific funding/grant from any
funding agency in the public, commercial, or not-for-profit
sectors. The authors declare no conflicts of interest.”
Description of Changes in response to reviewer’s sugges-
tion:1) In the initial resubmission in the first sentence the
word “Father” was changed to Catholic Priest to provide
clarity for non-Catholic readers.2) In this second resubmis-
sion the grammar and syntax have been revised and
improved to enhance readability.
Address Correspondence to: Charles R. Nolan, MD, Guadalupe
Regional Medical Center, 1215 E. Court Street; Seguin, TX
Accepted for publication: 23 August 2022.
Ó 2022 American Academy of Hospice and Palliative Medicine.
Published by Elsevier Inc. All rights reserved.
0885-3924/$ - see front matter
https://doi.org/10.1016/j.jpainsymman.2022.08.016
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Vol. 00 No. 00 xxx 2022 Journal of Pain and Symptom Management e1
appearance improved dramatically. Former drinking
buddies would stop and ask him how he did it because
they “wanted some of that”. Eventually JAL did receive
disability and Medicaid and I referred him for place-
ment on the liver transplant waiting list. Around
Thanksgiving, he presented with sudden worsening of
his liver failure (MELD score 25) and we were afraid he
would die from a complication. But then a Christmas
Miracle occurred. JAL received a call that a deceased-
donor liver had become available.
Yesterday, I visited him at the Transplant Center
ICU. Smiling broadly, he told me about that long-antic-
ipated call from the Transplant Coordinator and how
he was immediately overwhelmed with a profound
sense of sadness and guilt that some family was suffer-
ing the loss of a precious loved-one at Christmas. I’ve
cared for hundreds of kidney, liver and lung transplant
recipients over the years, yet this is the first time I can
recall one of them verbalizing the kind of things JAL
did yesterday. We talked about how something good
had come of another family’s tragedy and that after a
few months he could anonymously write to the donor
family to express his gratitude. I suggested that he
could also volunteer with our LIFE Care team to serve
as a coach and mentor for others suffering from liver
failure. I envisioned a “JAL Palliative Care Liver Trans-
plant Club” of which he has just become the charter
member. Beaming, he told me he’d love to pay forward
his gift in this way.
Still, I am painfully reminded that not all the
patients that desire to follow in JAL’s footsteps make it
to a successful transplant. This very week, two young
men who weren’t candidates for a liver transplant
died on our inpatient hospice service with complica-
tions from end-stage liver disease. I had recently had
the “JAL Club” conversation with one these young
men as he sat in a wheelchair in my office for the first
time, accompanied by his terrified family. I outlined
the difficult path to sobriety, disability, medical insur-
ance coverage and a possible liver transplant. Later
that day in a meeting with my team, I shared that
except for his deep jaundice, he was the spitting-image
of my own son, who’s also struggled with mental ill-
ness and the serious health sequelae of addiction since
early adolescence. Sadly, less than a week later, I was
present with this young man’s grieving family at his
bedside as they held vigil for his impending death. His
liver disease had already reached end-stage, compli-
cated by onset of hepatorenal syndrome, such that
time and circumstances precluded his even embarking
on JAL’s journey. I reminded his family that his
untimely death was the result not of some weakness of
character or moral failing but instead the conse-
quence of the all-too-real disease of addition, which is
no more the person’s fault than cancer or any other
illness is. I told the family of many an open Alcoholics
Anonymous meeting where I’d listened to the incredi-
bly tragic stories of young people whose first taste of
alcohol or an illicit drug had suddenly and irrevocable
changed their lives, not to mention the lives of their
families. My own eyes welling with tears, I explained
that they didn’t fail their loved one, but that the dis-
ease simply prevailed.
Cancer may be the “Emperor of All Maladies” but
addiction and substance abuse are surely also high-
ranking members of the Royal Court. I’m convinced
that God’s grace in helping me through the many years
of my son’s illness ultimately led me to a career in Palli-
ative Care and has provided me a strange gift that I
often give again, and which can make a real difference
in the lives of the patients and families I have the privi-
lege to care for.
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