The Many Stories of My Mother`s Death

Opinion Perspective
There is neither clear evidence nor prospective randomized trial results showing that targeting proteinuria to a goal is beneficial in terms
of long-term outcomes, but it is evident that targeting proteinuria
with dual therapy is harmful. Our patient did not achieve the less than
1 g/d proteinuria goal with dual therapy yet experienced AKI and hypotension. When weighing risks and benefits of therapy, one should
not institute therapy on the basis of a theoretical benefit when there
is proven harm.
Published Online: August 4, 2014.
doi:10.1001/jamainternmed.2014.3460.
chronic kidney disease. Am J Kidney Dis. 2004;43
(5)(suppl 1):S1-S290.
inhibition for the treatment of diabetic
nephropathy. N Engl J Med. 2013;369(20):1892-1903.
Conflict of Interest Disclosures: None reported.
3. Mann JF, Schmieder RE, McQueen M, et al;
ONTARGET Investigators. Renal outcomes with
telmisartan, ramipril, or both, in people at high
vascular risk (the ONTARGET study): a multicentre,
randomised, double-blind, controlled trial. Lancet.
2008;372(9638):547-553.
5. National Kidney Foundation. KDOQI clinical
practice guideline for diabetes and CKD: 2012
update. Am J Kidney Dis. 2012;60(5):850-886.
1. Messerli FH, Staessen JA, Zannad F. Of fads,
fashion, surrogate endpoints and dual RAS
blockade. Eur Heart J. 2010;31(18):2205-2208.
2. Kidney Disease Outcomes Quality Initiative
(K/DOQI). K/DOQI clinical practice guidelines on
hypertension and antihypertensive agents in
4. Fried LF, Emanuele N, Zhang JH, et al; VA
NEPHRON-D Investigators. Combined angiotensin
LESS IS MORE
PERSPECTIVE
Paul B. Bascom, MD
Dr Bascom lives in
Portland, Oregon.
Related article
page 1431
Corresponding
Author: Paul B.
Bascom, MD, Palliative
Medicine Physician,
1327 NE 33rd Ave,
Portland, OR 97232
(paulbbascom@gmail
.com).
1430
The Many Stories of My Mother’s Death
Of the many stories of my mother’s death, this one is the
easiest to tell. “My mother had a good death. My mother
died shortly after her beloved primary care physician, with
tears in his eyes, removed the CPAP machine that kept her
alive just long enough for us to gather at her bedside. My
mother died to the sound of music. She died as we sang
the songs that accompanied our family road trips and
camping adventures more than 40 years before. We had
no trouble remembering the words.”
This is the story our local newspaper reported, a
story of the untimely death of a community activist. “Former Eugene Mayor Ruth Bascom died Thursday evening, leaving behind a legacy of advocacy and action that
few local residents can match. Bascom, 84, had been
hospitalized since she suffered a fractured neck and fractured ribs in a car crash. Family members said she had a
sudden large stroke and died several hours later.”
This is the story the police report told, a story of the
cold, hard facts. “At approximately 4:30 PM a 2009
Toyota Prius driven by John Bascom, age 85, was southbound on Highway 395 when he apparently fell asleep.
The car traveled off the highway and struck several boulders and trees.”
This is the story her discharge summary told, a story
of medical details without context. “The patient was
transferred here after an MVA. On day 10, the patient developed atrial fibrillation and a few days later, dysarthria and transient hemiplegia. CT angiogram revealed
partial occlusion of her L MCA. Anticoagulation was contraindicated due to her recent trauma. The following day
the patient became obtunded. The family chose to make
her comfortable and she expired shortly thereafter.”
This is the story her medical bills told, a story of hightech, expensive and ultimately futile medical interventions. The bill for her last 15 days of life: $216 000.
This is the story I prefer not to remember. My mother
had a horrible death. My mother died after 15 days of mis-
ery in an intensive care unit. She died having endured severe pain from her broken neck and ribs, her pain medicine
restrictedoutofconcernsfordelirium.Mymotherdiedwith
screws bored into her skull, a halo attached to a stiff chest
harnessthatmadeherbreathingyetmorepainfulandmore
difficult. My mother died having suffered what she described as a “cold wind” every time the CPAP mask was
strappedtoherface.Hermouthdriedout,herlipscracked,
and she felt terribly thirsty. However, because of concerns
about her swallowing, she was allowed only ice chips.
So how did this happen? The secret to quality endof-life care, we are told, is to complete an advance directive, so that our preferences can be known before a medical crisis occurs.1 My mother completed her advance
directive many years ago. Her advance directive stated unambiguously: “If I am close to death, I want NO life support.” In her medical crisis, however, my mother’s advance directive proved irrelevant. Her physicians did not
considerherclosetodeath.Themedicalstorypassedfrom
physician to physician told of a previously healthy elderly
woman who had suffered broken bones in an accident.
I knew she was close to death. I knew immediately on
hearing the details of the accident that my mother could
not,wouldnot,surviveherinjuries.Myfathersufferedonly
bruises. He was protected by his seat belt and air bag. My
motherhadsevereosteoporosis.Theseatbeltcrushedher
ribs, and the air bag shattered her neck. I knew that there
was no way her brittle bones would ever heal. I knew she
would die. I just wondered when, and how.
The other secret to quality end-of-life care is to have
aconversationwithyourfamilyaboutyourpreferences,so
that they may speak on your behalf when a medical crisis
occurs.2 IwascertainthatIknewwhatmymotherwanted.
I remembered conversations we had 20 years earlier. I remembered my mother’s distress when her mother’s very
specific advance directive was ignored at a dementia care
center across the country. I arranged for my grandmother
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Opinion
to be transferred to a hospice in Oregon. There she received care consistent with her wishes and was allowed a peaceful death.
Yet, in my mother’s medical crisis, I felt powerless. I did not raise
my voice to speak on her behalf. When a surgeon recommended placing a chest tube to drain her hemothorax, I did not say, “Why put her
through that? I am certain she will die anyway.”
Mymotherseemedtounderstandthattherecoverystorythephysicians were telling her was fiction. In a lucid moment a few days before
the stroke, she began to plan her funeral. “Pastor Greg,” she said, in the
toneofvoicesheusedwhensheexpectedtobeobeyed,“Iwantashort
memorial service, less than an hour, with more music than words.” Yet
she, too, submitted meekly to each burdensome intervention, bowing
to the authority of her physicians with silent acquiescence.
Each day at work as a palliative medicine physician I advocate
vigorously for patients near the end of life. Yet even when my mother
entered the recognizable death spiral known as the “Weissman triad”
(feeding tube, restraints, pulse oximeter),3 I could not summon up
the courage to challenge her physicians’ authority. I wanted to cry
out: “Do you not recognize that your best medical technology cannot rescue her tired and broken body?” Instead, I said nothing.
Why did I remain silent? The lesson I have gleaned from my own
mother’s death is this: our standard approach to end-of-life decisionPublished Online: July 28, 2014.
doi:10.1001/jamainternmed.2013.12205.
Conflict of Interest Disclosures: None reported.
1. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle
T. Association between advance directives and
quality of end-of-life care: a national study. J Am
Geriatr Soc. 2007;55(2):189-194.
2. The Conversation Project. http://theconversation
project.org/. Accessed September 10, 2013.
making places an enormous and unfair burden on patients and
families.4 Thestandardapproachistofirstelicitfrompatientsandfamilies their preferences, finding out what they want. But my mother was
frequently delirious. My father was so grief-stricken he could barely
speak. And I was not about to say, “My preference is that my mother
dies.” Nor was I willing to ask my mother, “Do you want to die?”
At work, I no longer ask patients and families what they want. I
know what they want. They want our wisdom about prognosis.5 They
want to know when further medical treatment will no longer restore health.6 They want our guidance, and compassionate sharing
of the news that death is near.7
When I received the news of my mother’s massive stroke, I felt relieved. Her dying was now visible for everyone to see. From my perspective, the stroke was the blessing that brought an end to her misery. To this day I wonder, absent the stroke, how much suffering would
she have endured before she, or I, or someone, said “enough!”?
I know which story of my mother’s death I prefer to tell. Maybe
it’s not the truer story, but it’s the better story. “My mother had a
good death. My mother died to the sound of music. She died as we
sang the songs that accompanied our family road trips and camping adventures more than 40 years before. We had no trouble remembering the words.”
3. Weissman DE. Swallow studies, tube feeding,
and the death spiral: fast facts and concepts, No.
84. http://www.eperc.mcw.edu/EPERC
/FastFactsIndex/ff_084.htm. Accessed September
10, 2013.
discussions about limiting life support in intensive
care units. Crit Care Med. 2007;35(2):442-448.
4. Sulmasy DP, Snyder L. Substituted interests and
best judgments: an integrated model of surrogate
decision making. JAMA. 2010;304(17):1946-1947.
7. Back AL, Trinidad SB, Hopley EK, Arnold RM, Baile
WF, Edwards KA. What patients value when
oncologists give news of cancer recurrence:
commentary on specific moments in audio-recorded
conversations. Oncologist. 2011;16(3):342-350.
5. White DB, Engelberg RA, Wenrich MD, Lo B,
Curtis JR. Prognostication during physician-family
6. Rosenfeld KE, Wenger NS, Kagawa-Singer M. Endof-life decision making: a qualitative study of elderly
individuals. J Gen Intern Med. 2000;15(9):620-625.
LESS IS MORE
PERSPECTIVE
Lisa M. Letourneau,
MD, MPH
Executive Director,
Maine Quality Counts,
Manchester.
Related article
page 1430
Corresponding Author:
Lisa M. Letourneau, MD,
MPH, Maine Quality
Counts, 16 Association
Dr, PO Box 16,
Manchester, ME 04351
(LLetourneau
@mainequalitycounts
.org).
jamainternalmedicine.com
Next Time I’ll Ask
As an internist by training, former emergency physician, and now, quality advocate, I spend much of my
time urging physicians to engage patients to take a more
active role in their health care. Yet I found myself falling
uncharacteristically silent, never asking a single question about potential alternatives or the drug’s cost.
I headed to the local pharmacy, knowing the bill
would be considerably higher than the old days of $7
amoxicillin. But not until I picked up the antibiotic did I
learn its cost: $140 for a 7-day course of treatment. While
I was fortunate enough to have the resources to buy the
prescription and gratefully watched my mother recover over the next week, I wondered how many people,
particularly older adults like my mother, living on a fixed
income, would have walked away without the medicine, hoping “things will get better,” only to return to the
emergency department a few days later in a more precarious condition.
I knew I should have asked. My 82-year-old, “I’m fine”
mother had struggled with a worsening upper respiratory tract infection and cough for 5 days. My sister and
I finally convinced her to leave her home an hour north
of us to spend a few days under our watchful eyes. As
her cough and fever continued to worsen, my mother
reluctantly agreed to go to the local hospital emergency department.
My mother and I listened attentively to the
p hy s i c i a n’s d i ag n o s i s o f p n e u m o n i a , a n d we
were reassured to learn she was a good candidate
for oral antibiotic therapy and outpatient care. Feeling
grateful and trusting, my mind prickled only slightly
when the emergency department physician recommended a newer, broad-spectrum antibiotic, without
a discussion of cost, my mother’s ability to pay, or
the possibility of a less-expensive, equally effective
treatment.
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1431
Opinion
The biggest surprise was not the drug’s price, but rather my own
reluctance to ask questions. How could this be?
This strange transformation of my usual outspoken self into passive bystander raises concerns for me professionally, as I am helping to promote the American Board of Internal Medicine’s “Choosing Wisely” initiative in Maine. Choosing Wisely is a physician-led
effort to engage physicians, clinicians, and patients in conversations about making wise choices about the use of tests and treatments that are often overused. Patients’ willingness to question a
recommendation from their physician is a fundamental premise underlying the effort’s goals. Yet studies, surveys, and, in my case, personal experience, reveals that most patients remain silent, just as
I did.
Older adults especially report feeling unprepared and unwilling to challenge the perceived authority of their physician. They express concerns that questions could appear disrespectful or could
cause their physician to view them as “difficult.” (And some health
care practitioners do bristle when patients question their recommendations.) Patients often feel unequipped to engage in a dialog
with a person who often speaks a technical language they do not understand. When they are sick, scared, and vulnerable—particularly
when their practitioner appears rushed—these concerns become
Published Online: July 28, 2014.
doi:10.1001/jamainternmed.2014.3049.
Conflict of Interest Disclosures: Maine Quality
Counts is a grantee of the American Board of
insurmountable barriers to the productive dialog we practitioners
say we want with “engaged patients.”
Efforts to reduce unnecessary care, such as Choosing Wisely, will
not work unless we physicians and other health care providers invite questions and create a “safe space” for our patients, saying, for
example, “It can be hard for patients to ask questions but it would
help me if you did.” We can model the experience for patients, saying, “When I’ve gone to the doctor with my mother, even I sometimes find it difficult to ask questions or challenge a doctor’s recommendation. I’m not sure if you’re feeling that way now, but I hope
you know it’s okay to ask me about anything I’ve said.”
And cost should be an acceptable topic of conversation between health care practitioner and patient. With high-deductible
health plans, more and more Americans are paying higher out-ofpocket costs, while many others remain uninsured, despite the Affordable Care Act. As health care practitioners, we can help patients avoid financial harm by asking about their ability to pay and
offering low-cost alternatives.
Ultimately,thesuccessoftheChoosingWiselyinitiative—andmore
broadly,ourcollectiveabilitytoreduceavoidablehealthcarespending—
requires not only changing patient expectations and behaviors, but
changing medicine’s culture. In the meantime, next time I’ll ask.
Internal Medicine (ABIM) and has received funding
to support efforts to promote the ABIM’s Choosing
Wisely initiative in Maine. The funds support
general program activities but do not directly fund
the author’s salary.
LESS IS MORE
PERSPECTIVE
Brendan R. Jackson,
MD, MPH
Rollins Emory School of
Public Health, Atlanta,
Georgia.
Corresponding
Author: Brendan R.
Jackson, MD, MPH,
Rollins Emory School of
Public Health, 1518
Clifton Rd NE, Atlanta,
GA 30322 (brendanjac
@gmail.com).
1432
Rescuing My Grandmothers
It was midway through internal medicine residency
when a fellow resident turned to me and said, “I’m done
with this medical torture.” I knew exactly how he felt. We
had been working furiously to care for very sick, elderly
patients in the intensive care unit, performing invasive
procedures, carefully selecting medications, and sometimes ordering the use of physical restraints when patients became delirious and agitated. I had felt uneasy
about this care when it seemed futile, but I had been too
overwhelmed and exhausted to challenge the status quo.
Now, I could no longer avoid my own misgivings.
From that point on, I did my best to talk with patients and families in a frank and open way about their
expectations for medical care at the end of life and the
reality of what medicine could and could not accomplish. Although difficult, these discussions were some of
my most rewarding experiences in my residency. On several occasions, patients’ children, themselves in their 50s
or 60s, stopped me in the hall to thank me for helping
their mother or father die in peace.
Since then, both my grandmothers died in their late
80s. Both lived independently until their final hospitalization. Both made it vigorously known that when the
situation arose, they wanted to die peacefully without
excessive intervention. Despite my experience in residency and the fact that my father is also a physician, it
turned out to be incredibly difficult to give them what
they wanted.
In 2009, my maternal grandmother suffered a ruptured iliac artery aneurism and was rushed to the hospital. Against all odds, she made it through emergency
surgery and was conversing with family 5 hours later.
Then she aspirated gastric contents, and a series of specialists went to work, with no one in charge of her care
and no one to talk to her grieving family, who were there
at all hours asking questions. Even as the problems and
interventions multiplied, her physicians never asked
what she would have wanted; they never offered guidance that would have helped her 7 children let her go. It
was torture to watch; it must have been even worse for
her to endure. More than a week later, our family, without support from the hospital, found a hospice where
she was transferred. There, she was given a warm, supportive environment during her final hours.
Just over a year later, we went through a similar experience with my paternal grandmother, who was hos-
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