This is a commentary intended to address
some of the many important points raised in the November
25, 2024 poignant
New York Times Guest Essay by Sarah Wildman about “end
of life” care
“If My Dying Daughter [Orli Wildman
Halpern] Could Face Her Mortality, Why Couldn’t the Rest
of Us?”
I have copied the
article in black font here and am inserting my
comments in this reddish font for contrast.
Although
people have been dying for tens of thousands of
years, American culture by and large has not come to
grips with that reality in helping people deal with
the deaths of loved ones that have occurred without
warning, or helping people who are knowingly facing
their own impending deaths or the impending deaths
of loved ones from terminal illness, injury, aging,
or birth defect. As exemplified in this
article by Ms. Wildman, death is a fact of life we,
as a culture, don't contend or cope with very
well. We could do better. --Rick Garlikov
The first week of March
2022, I flew to Miami with my 13-year-old daughter,
Orli; her 8-year-old sister, Hana; and my partner, Ian.
We were, by all appearances, healthy. Robust, even.
In reality, we were at the end of a
reprieve. Orli’s liver cancer had by then been assaulted
by two years of treatments — chemotherapy, a liver
transplant, more chemotherapy, seven surgeries. Now new
metastases lit up a corner of one lung on scans,
asymptomatic but foreboding. We asked her medical team
if we might show her a bit of the world before more
procedures. Our oncologist balked. Hence, this briefweekend
away.
When we arrived at the beach Orli ran
directly to the water, then came back and stretched out
on a lounge chair. She turned to me and asked, “What if
this is the best I ever feel again?” Three hundred
and seventy-six days later, she was dead.
In the time since she left us, I have
thought often of Orli’s question. All that spring,
Orli asked, pointedly, why did we think a cure was still
possible, that cancer would not continue to return? Left
unspoken: Was she going to die from her disease? It was
a conversation she wanted to have. And yet what we found
over the wild course of her illness was that such
conversations are often discouraged, in the doctor’s
office and outside it. Unless
physicians have some particularly compelling reason
for discouraging such conversations that seem actually
to fit your loved one or yourself, it is unlikely part
of his or her medical expertise. Insofar as you
have good reason to think it is mistaken in your
circumstances, you should disregard it. That
does not, however, mean that just any approach you
take, conversations you initiate, or comments you make
to someone dying will be helpful or in their best
interest. Sensitivity and knowledge are
required, but even then some of this is a matter of
trial and error with any particular patient, who
hopefully will understand that and be able to tolerate
and appreciate what they recognize as loving good
intentions that just went awry.
What would it have meant for Orli’s
last year if her medical team had encouraged us to meet
her where she was? -- or if
people knew to do that without encouragement from
health care providers? What if we
lived in a society that was able to sit with the anguish
that arises for very sick children and their families?
In other words: What if we were presented, as we should be, with
something other than relentless hope? If we had been
asked to really consider that Orli’s time on earth was
limited, how would we have used that time? Everyone's time is limited, so that
question needs to be addressed by everyone, not just
by those whose limits are likely relatively
short. But, as before, death is an important
fact of life that should help us know to make the most
of whatever time we do have. If only seems to be
less important when it does not seem as urgent; but it
is always important. Not knowing how much time
you have left when you are normally healthy makes it
difficult to known when to initiate any bucket list
you might have that need to be put off to near the end
of life so that the activities don't squander future
opportunities if you do live longer. Having
enough to live on and leave your family if you quit
your job to climb a mountain, travel, or complete some
project important to you, when you will be dead within
a month is generally not enough money to do that if
you will live another forty or fifty years and would
have trouble finding work again when your project,
travel, or adventure is done. When short-term
goals and long-term ones conflict, it would be easy to
know which to choose if you knew how long you would
live, but, for better or worse, we don't normally have
that 'luxury' and therefore it is difficult to know
which things to defer and which to engage or indulge.
Americans — really, Westerners— are
terrified
of death. We shy away from it. Death is a problem to
solve, not an inevitable part of life. As the grief
therapist David Kessler pointed out to me, we once
visited the dead in the front parlors of private
homes. Yes, but I am not
sure that having the casket present with the deceased
in it is really much help. It seems to me it is
just the visiting part as a sign of caring and as a
temporary distraction for those who are grieving that
is important. The Jewish custom of "sitting
shiva" -- mourners receiving visitors expressing their
sympathy and paying respects, usually at their home or
the home of a friend or loved one -- lasts for a week;
and it is my own personal feeling that the idea is to
make mourners finally glad to be alone and on their
own when that week is over and they don't have to
socialize constantly any more. But the visiting
is often very nice, and it doesn't depend on a casket
being in the living room, den, or parlor.
Now the dead are tucked out of sight, handled by others.
A bereaved family is the locus of nightmares rather than
the focus of shared support --
given the number of people who attend funerals, wakes,
visitations, mourners' homes, etc. I doubt that is
true. People are often as supportive as they
know how to be. Nowhere is this more true
than with the prospect of a child’s death -- but not because it is a nightmare
for the visitor, but because it is really difficult to
know what to say that might bring any comfort at all
to the mourners over such a terrible loss. But I
think there can be ways to help mourners cope with
it. More about that later. Death
from illness is seen as aberrant, unusual, terrifying.
Death from war, gun violence, abuse is lamentable, awful
— separate. Healthy children and teens are largely
shielded from the critically ill. Visiting the sick, let
alone the dying, is associated with the aged and infirm;
a charitable act, but not integrated into our
ethos. Yes, we could do
better; and should. Clergy members are
overburdened. Death in America is a whisper, a shame, -- in the sense of a tragic and very
sad thing, not in the sense of being something to be
ashamed of -- an error --
in the sense of being a terrible thing to happen to
someone young who had "their whole life ahead of them"
and who, as Dostoevsky said, hadn't eaten the apple
yet or had much of a taste of it. Supporting a
family through the end of life is delicate. For a child,
it is also obscene -- no, just
really sad and very emotionally difficult to do
satisfactorily at all, let alone successfully or well.
In pediatric cancer care, which has an understandable
emphasis on cure, advances that have brought families
hope can often mean survival rates are downplayed, hard
conversations avoided. Death, when it comes, feels like failure. Medical schools rarely insist
that students consider the prospect. Physicians, as (all) human beings,
should have sensitivity and sense to be compassionate,
but there is no reason to expect them to be
particularly good, and certainly not exceptional, at
providing more emotional comfort to grieving families
than anyone else can, including even clergy or grief
counselors, who do not always say or know the right or
best things to say either.
If doctors aren’t comfortable
broaching the subject of death with their patients, the
rest of society long ago lost the ability to do so. Ian
once quietly mentioned to an old friend that he feared
Orli would not survive. She chastised him for giving up
hope. He should not say such things. But that is different from knowing how
to deal with the situation or even the fear, because
some people believe that voicing the possibility of
tragedy or anything going wrong is to invite it to
happen. They don't think you can truly
sufficiently hope or pray for the best while expecting
or fearing the worst will happen. Many people do
not like to make contingency plans for anything
because of that. They think confidence and faith in
the future is important for having our hopes come
true. I do think there is a way to help overcome
the normal view of the tragedy of death of a child or
loved one without that being a 'contingency' plan,
however. Again, more about that later. In
the time leading up to losing Orli and in the aftermath,
we lived on the terrible fault lines between these
dynamics -- because it is a false
dichotomy to think that you have to either choose to
understand death on the one hand and hope to prevent
it on the other. You can understand death, even accept
it, and still try to prevent it as long as
possible. As was said on an episode of the
original Star Trek, one can be prepared to die without
therefore preferring to.
To sit with a family that has
experienced, or anticipates, child loss is to know it
cannot be made better -- the loss
cannot be made better, of course, but the grief can.
And yet there are ways to better how we face it -- how we help each other better cope
with it, and how we cope better with it ourselves.
Throughout Orli’s illness — from
diagnosis forward, and particularly in her final
harrowing months — her physical pain was largely
addressed. But those efforts were undercut by a terrible
absence of emotional support — for her, for us, for
Hana. Yes, and that is far
too typical and prevalent an experience. But
culturally we can do better to help individuals better
cope with it themselves and with the help of friends
and each other. It does not need to be left to
the proprietary province of medical providers,
preachers, or counselors. As for how to
truly understand the expression “life-limiting illness,”
we were largely on our own -- but
we can make that understanding eminently achievable
and commonly actually attained in society.
The medical teams who worked with
Orli were good, smart and, above all, caring. Her
community, likewise, was filled with well-meaning
people. I worry this may come across as embittered: the
bereaved mother, shaking her fist at the sky. I
hope instead it offers a potential corrective. Perhaps
part of Orli’s legacy is insisting on this
conversation. Actually this
conversation should be part of all life, not just "end
of life" or potential "end of life" situations.
The issue is about what makes for "a good life", no
matter its length, and whether even a brief life can
be a good one, and if so, when and how.
Conversations about many subjects are important to
have before they become urgent to have: death and its
significance for a good life, ethics (prior to facing
punishment for avoidable wrongdoing), finances (prior
to terrible debt or poverty), sex (prior to being in
bed with someone), learning (prior to exams), wellness
(prior to illness), coping with disappointment (prior
to experiencing it), etc.
In the months after that
beach trip, life as our family knew it collapsed and
reformed, through lung surgery and radiation, a first
brain metastasis, brain surgery, more radiation — and
then, impossibly, a second brain tumor, surgery and,
horribly, more extensive radiation. In the moments
between, though, life was still life. Orli got back on a
surfboard, read 15 books, ate her favorite foods,
danced. In short, she was
able to do things that made it worthwhile enduring the
bad parts and the suffering from the bad parts.
But most life has bad parts, and the goal should be to
find and have the other parts sufficient to make the
bad parts and the suffering be at least worth
enduring, if not outright far transcended.
In late September, following a
successful second brain surgery — after which Orli won a
lead role in her school’s production of “Twelfth Night”
and joined the volleyball team — she was hospitalized
with severe headaches. Her medical team was, at first,
intent on getting her off the hospital floor, back to
play rehearsals, back to school.
But as days in a hospital room
stretched to a week, then to two, the pain did not
subside, despite various interventions. One afternoon, a
palliative care doctor stopped by and lightly offered
what she called a “back door” to home nursing: hospice.
Under Obamacare, she confided, children may continue
curative efforts concurrently with hospice, a prospect
unavailable to adults. (She apparently did not know
that, in our case, hospice insurance benefits did not
include general home nursing.)
I was driving when a hospice intake
nurse called. Orli, I told her, was just about to enter
an experimental drug trial, and I understood she was
entitled to receive hospice services while continuing
curative or life-extending care; she could even leave
hospice if she improved. The nurse acknowledged all that
was true. But, she added, You know they told me she has
six months to live, right?
No, I said. You’re the first to tell
me. Obviously not a good
way to learn that or to be told it as if it were
definitive rather than probable, but it is something
that should have been taken into account as a
possibility from the beginning. Moreover,
everyone should know that death can come to anyone at
any time, period; and that should always be in the
back of our mind about how best to live and to treat
others, especially in choosing or involving acts that
carry more risk than others.
After Orli was discharged, an
oncologist caught me in the hallway. I heard you didn’t
finish the hospice intake, she said. I told her the
story — the nurse, the car, the prognosis — and asked:
Is it true? Does she have six months? She didn’t quite
answer. That’s an antiquated way of thinking about
hospice, she said. She did not say: Sarah, we cannot
predict when death will occur, but we have discussed
that there is no cure. Orli will not survive. Nor did
she say: The idea of hospice may inspire panic,
but studies have shown it
can actually extend life.
I have told this story many timesto
my sister, herself a nurse practitioner in oncology.
Each time she asks: If the doctor had said bluntly,
“Sarah, she’s dying,” would I have been able to hear
her? -- presumably this
means "would you have been able to believe
her?", or possibly "would you have been able to accept
that?" or "would you have realized all the
ramifications of her death (for you and your family
and for her)?". I doubt most people realize the
ramifications of knowing they are going to die,
whether soon or in the distant future. There are
many experiences that are difficult to imagine oneself
going through even though one knows on the surface
that one will do it -- having a first job, attending
college, getting married, having a child, having
another child, having a teenager, getting divorced
from a loveless, maybe even miserable, but
nevertheless comfortable marriage (the devil you
know...) major change in a workplace or starting your
own business, etc. Sometimes even after you have
done something difficult successfully you can't
believe or imagine how you were able to do
it. I have told her: Honestly, I
do not know. Maybe not. But that’s not the conversation
we had. But there are
better and worse ways to convey that message; ways
that are kinder and gentler and also more meaningful
and emotionally easier to accept and adjust to versus
ways that are cold, just "clinical" and emotionally
stultifying and numbing.
This story might sound
ridiculous, even willfully ignorant. It was hospice,
after all! Shouldn’t I have understood that meant she
was dying? But consider: I was assured that for
children, hospice is no longer only for end-of-life
care.
Doctors know parents of critically
ill children are endlessly searching to find the
miracle, the untried drug, the new treatment, the expert
with a plan that will reshuffle the cards. Hearing
“There is no cure” is not the same as hearing “She is
dying. She will die,” nor is it the same as saying
“Death is near.” Many of us with terminally ill children
need to be told that our child is going to die over and
over again to really believe it. Again, I think this means something
like "to really feel its impact and real emotional
significance and to know how to deal best with it"
more than simply "knowing it as a surface fact."
Medical teams are typically reluctant
to bridge that distance between reality and hope.
But you don't have to because that
is a false dichotomy since you can expect the worst
but still hope for the best; and it is not the main
problem. The main problem is, as even with a
healthy child or any other loved one -- how to help
them have their best days, regardless of how many days
they will have in life. The quality of life is
just as important as its quantity, and particularly if
the quality of life can be higher a greater percentage
of a short time than over a long time. A short,
happy, fulfilled life might be preferable to a long
unfulfilled one, and certainly preferable to a
long miserable or even unsatisfactory one.
A February 2023 study in The Journal of
Palliative Medicine on families with children
in advanced stages of cancer carefound a
consistent pattern of soft-pedaling news to parents and
patients, of leaving, as the authors put it, “space for
hope,” with “vague warnings” and “data without
interpretation” — meaning that patients and their
caregivers weren’t given the real shattering news necessary to help them better
determine what is best to do with the remaining time.
Many of these patients died during the study.
But not telling families where they
are in the process stalls or stymies important
conversations. How to live well, even when facing death,
requires knowledge. But
that should be general knowledge, not just for end of
life situations and not just for troubling
times. It is important to know what "a good
life" is, what makes it be good, and why.
“It is so hard to get clinicians to
even talk about death and dying,” said Dr. Tessie
October, an intensive care and palliative care physician
who briefly worked with Orli. “And part of it is that we
spend so much of our energy saving lives that the idea
of a life not being saved feels like a failure.” But it is also not part of their
expertise, so, of course they are uncomfortable
talking about it.
Dr. October noted that one of the
children’shospitals she worked at refused
to fund-raise for bereavement services when she asked to
create a program. It didn’t want funders to think
children died there. That
is a different issue.
The prospect of child death may be
taboo, even in oncology, but dead and dying children
hovered all around us from the time of Orli’s diagnosis.
They were present in a phalanx of butterflies tacked in
their honor to the walls of the department; they
returned in the form of toys or blankets or other
trinkets distributed to hospital rooms, each affixed
with a label of a foundation and the story of a life cut
short. It is shameful that
a subject which is so important and so obviously
present is taboo to treat, address, or discuss in ways
that could be helpful and even comforting.
Ignoring the prospect of the child's dying and being
concerned or afraid of it is even cruel when there are
ways to ameliorate that fear.
Death rates from cancer among
children have dropped precipitously over
the past few decades, but cancer remains the leading
cause of death by disease among kids. Cancer is not one
disease: Orli’s cancer, hepatoblastoma, has about an 80
percent five-year survival rate for children diagnosed
under the age of 3, but for kids diagnosed over age
5 (who number far fewer), survival rates
plummet (Orli was 10 when she was diagnosed). Some brain
cancers still have a close to zero percent chance of
survival. After Orli’s death I ran into one of her
oncologists and asked her if she had ever had an older
child survive this diagnosis. She had not. But life itself has a zero percent
survival rate. Orli herself understood this, as
is pointed out below in the article, she texted a
friend "I’m going to
die,” she wrote. “But doesn’t everyone? I just will
die a little sooner than most. This is a great
opportunity for me actually. Everyone’s focused on the
time they have left. They forget to live." The
lines from Tennyson's "Ulysses" fit here, not only for
a life ending or seriously impaired by age, injury, or
illness, but for everyone's life daily:
To rust
unburnish'd, not to shine in use!
As tho' to
breathe were life! Life piled on life
Were all too
little, and of one to me
Little
remains: but every hour is saved
From that
eternal silence, something more,
A bringer of
new things;
...
Death closes
all: but something ere the end,
Some work of noble note, may yet
be done [and joys,
love, and warmth experienced that make the
suffering worth enduring and that help distract
us from the suffering to make it even cease
during that time],
...
Tho' much is
taken, much abides; and tho'
We are not
now that strength which in old days
Moved earth
and heaven, that which we are, we are;
One equal
temper of heroic hearts,
Made weak by
time and fate, but strong in will
To strive, to
seek, to find, and not to yield.
We knew it was never impossible that
Orli would die of her disease (Ian often asked her
doctors pointedly about the prognosis), but we spent
three and a half years stubbornly tracking down experts
who dangled the possibility that we would see our way
through which is good and
admirable, but not incompatible with making the most
of each day. The hope that your child will be
the one to upend the data set offsets the taxing reality
of daily cancer care for both child and caregiver. And
Orli herself bounced back remarkably from her liver
transplant, from chemotherapy, from surgeries, from
bouts of sepsis. Yes, she
had a remarkable fighting spirit and tremendous
resilience; it is just sad that she needed them.
Her tumor markers reliably dropped after a surgery or a
treatment. Until they didn’t. One should be grateful for good
medical results, but never expectant of them to
continue. The only way to permanently avoid bad
medical news about one's health is to die suddenly
without warning. Ironically, as medicine
improves, the dying process becomes more prolonged
than it used to be. In order to keep
improvements from being terrible at worst or a mixed
blessing at best, we need to do better helping each
other cope with the dying process.
For cancer families, the transitions
between stages of care, from diagnosis forward, are
emotionally grueling. Navigating the abrupt shift from
curative care to maintenance living — a life extended,
but with no known cure — requires an abrupt pivot -- because 1) we don't really, under
normal circumstances, take one day at a time and try
to make it the best day it can be, because 2) we
generally assume and just subconsciously expect there
will be more than adequate time to do what we want,
and because 3) we normally cannot very well imagine
our own death or dying . Facing the limits of
medicine’s ability to cure forces medical teams and
caregivers alike to hover in a space between -- or containing both -- hope
and acceptance, love and terror --
I would prefer to say love and loss. I think
profound sadness enters more than just fear, let alone
"terror".It’s also where
communication falters. If a child begins to die,
support for both patient and family requires a delicate,
coordinated effort between social workers, palliative
care experts, oncologists and hospice -- yes, but only as part of greater
social support in general of family, friends,
acquaintances, and even newly met strangers in some
cases. Everyone should lend a helping hand and
heart. Families like ours need both to keep a
child comfortable and to brace for worse. Such support
is possible. But it takes effort, funding and, perhaps
most important, the will to recognize that end-of-life
care, and then, inevitably, bereavement care, is
essential care in pediatrics --
and in life for everyone at some point or other, not
only at the end, but as motivation to do one's best
each day (which may include periods of rest,
recuperation, and resilience; one doesn't need to
always try to burn the candle at both ends or, to mix
metaphors, run full throttle; that can be
counterproductive in the long run). That’s
rare. We didn’t find it.
Two weeks after that “six months to live”
conversation, Orli’s oxygen levels dipped. Knowing
hospice offered home deliveries of medication and
oxygen, we called back. But a baton was dropped in
the transition from hospital teams to hospice, which
seemed to know little about Orli and was not prepared to
help us face the traumatic intermediary space we were
in: It was not clear how long she might continue to live
on, trying experimental treatments.
My only in-person interaction with
the hospice on-call doctor was about five months before
Orli died. We were beginning a new maintenance regimen
of oral chemotherapy. That day, at my kitchen table, the
doctor handed me the long-form equivalent of what is
colloquially referred to as a D.N.R. form, or a do not
resuscitate form, fully filled out. No one at the
hospital had yet discussed eschewing resuscitation with
me. I begged him: Please, let’s wait. Though I
have begun having this conversation with my family, I am
not ready. He proceeded to lecture: Critically ill
children should not be revived --
that is false if they have something to experience
that would make their being revived (and therefore
have to then further experience dying)
worthwhile. Plus, if their loss of consciousness
was not painful or scary to them, then that
might minimize or even eliminate their fear of death
when it finally does occur. Pulling out a piece
of paper, he drew a graph with the high point of Orli’s
life, before diagnosis, and then drew a line on a sharp
downward slope -- which is
irrelevant and particularly ought to be irrelevant to
a hospice specialist because the point is not
permanently preventing death for anyone, but making
dying be less evil or traumatic and about helping
patients still have their best possible days, hours,
or minutes. All life ends with his downward
slope; the real issue is what to do about it and
during it. And a hospice specialist ought to
know that. The implication was: Now we are at
acceptance of the end. But that had not been her
trajectory. It appeared that no one from our hospital
team had conveyed Orli’s timeline — how she had returned
to school again and again, written short stories, how
she had gotten on a surfboard after a brain tumor or
danced at a Lizzo concert just weeks prior. And he did
not ask.
He, and that hospice, seem to be
less than competent and perhaps uncaring or at least
not conscientious, but you can find incompetent people
and organizations everywhere. It is not just a
medical problem, although it takes a terrible toll in
any important dire situation. One needs to try
to report and try to remedy or work around it the best
one can; but often it is difficult and sometimes even
impossible to overcome the inertia of ignorant,
apathetic, irresponsible, unethical, insensitive
people, especially when they are in high and crucial
places. There are far too many of them.
What I wanted him to say was: I’m
sorry to meet you. This is monstrous. But time is no
longer boundless -- not that it
ever was, or is. How can we maximize these
weeks? And the reason it is
important to know how much time there will probably be
and what it will be like is important for knowing how
to best likely spend that time -- what to indulge in
now for gratification and what gratifications to defer
for likely later payoff if there is going to be likely
time for the investment in future joy to pay off.
Instead he offered the bluntness we
needed at the hospital, without the relationship. I
later wrote to him, detailing my discomfort. He wrote
back, graciously. He said I had made him a better
doctor. I never spoke to him again. One would like to think that social
sensitivity and compassion can be taught, but possibly
it can at best be honed in people who already are
graced with some modicum of it. When my mother
was in end stage painful cancer, the oncologist asked
my father if he wanted him to put her to sleep.
My father agonized over that proposition and talked
with his rabbi and friend who said Judaism permitted
that, but my father was still in distress about what
to do. I didn't learn about the doctor's giving
my father the option until he finally told me about
it, and I said I wanted a consultation with the doctor
and my father because that seemed a very odd thing for
the doctor to simply ask in that way; and I thought
more details and a fuller explanation were
needed. When we met, I asked the oncologist if
he had asked my father whether he should put my mother
to sleep, and he said yes, he had, and that that was
an option. I said "Are you talking about
euthanasia?" and the oncologist flinched and said "No,
that is not something I can or would do." And I
said, "Then what are you talking about? Because
in normal language, the phrase putting an animal to
sleep IS about euthanizing them. So what are you
talking about?!" He said that my mother's level
of pain had reached such a high threshold that to give
her enough morphine to render it bearable for her
would render her unconscious and she would remain that
way with that level of morphine until she died."
Even my father looked at him and said "Then why didn't
you say that in the first place!" He gave
consent because he and my mother had long ago promised
each other not to let the other one suffer terrible
pain if it was preventable." I considered the
doctor to be an idiot, and wondered whether his idiocy
extended to his medical knowledge, so I sought out
advice from a nurse, and ended up by chance talking
with the nurse who had been head of oncology nursing
for a long time. She said "I'm sure the doctor
believes what he said, but my experience is that a
high level dose of morphine like this will hasten
death by at least a few days, particularly shutting
down the renal system, among others." I let my
father's decision stand without giving him the further
details; I didn't think he needed to agonize over
whether to give mom two or three days more of a most
painful existence or help end her life those two or
three days sooner free of pain and suffering. We
had all already said our goodbyes to her before this
and she and we were at peace with her coming to the
end of the good life she had lived when it was her
time. But I doubt that we ourselves will live to
see the end of idiots and idiocy in medicine and end
of life care, no matter how good the training programs
might be. Some people seem immune to training or
developing social skills.
But on the other hand, the needs of patients and
family members will vary from person to person, and no
matter how sensitive, well-intentioned, and
well-trained providers will be for dealing with these
sad and traumatic circumstances, there will be the
wrong thing said or said in the wrong way to the wrong
person by pure chance. Some of this is
unavoidable, but hopefully forgivable or excusable
when simply such an accidental, unintentional error.
Even at the clinic, among
those who knew us best, we fell through gaps in
caregiving. Just as Orli started to really decline, her
favorite child-life specialist left the hospital.
Given their history together,
particularly the story told next, if he still lived in
the same city, he should have visited Orli and still
be allowed to help her; and if he moved out of the
city, he still should have kept in touch via video or
audio calls or face chats and such.
A child-life specialist, as Orli once
explained on an Instagram livestream, is
neither nurse nor therapist, but someone trained to buoy
and guide a child throughout care --
but everyone should be a "person-life specialist" for
everyone in that regard. As Clarence Darrow
wrote in his autobiography: "The best that we can do
is to be kindly and helpful toward our friends and
fellow passengers who are clinging to the same speck
of dirt while we are drifting side by side to our
common doom.
" In her case, it was
the person in the hospital Orli most trusted. We once
nominated him for an award he won — airline tickets. He
flew to Europe and brought back a Paris sweatshirt Orli
rarely removed.
In January, two months after we had
enrolled in hospice, Orli ended up hospitalized for
three weeks; by then, he was gone. An external
intravenous line put in her arm, threaded through a vein
near her heart, had brought on an infection of such
virulence it caused massive seizures. For days,
infectious disease experts searched for the right
antibiotic cocktail. Nurses wore yellow paper gowns they
ripped away when they left her room, lest pathogens
spread.
When Orli finally left intensive
care, I went to see child-life specialists at the
hospital who she knew, and who, more important,
knew her — her perspicacity and her
wit, her droll cynicism. I wanted someone she trusted to
help her face where we were now. Maybe even to consider
death. It couldn’t be someone entirely new: We were too
jaded, too sad, too shocked for that. I disagree here, I think, in that it
could have been someone new if they were good, and
certainly better than the person assigned. I
was dissuaded from consulting anyone beyond oncology -- which seems to me to be shameful
advice, since it is ridiculous to limit the pool of
potentially good people who can be helpful. One
child-life specialist who had worked with Orli said she
was explicitly advised not to speak to us. Without some good explanation which I
can't now imagine, that seems to be a terrible act by
the hospital. We were assigned a new
hire, a chipper young woman who didn’t know Orli. She
brought with her treacly tones calibrated to a different
type of child -- that may be an
overly generous characterization of this specialist,
since her manner might not suit any child. I
realize this comes down to personal preference and it
may just be a limitation of mine to be unable to
imagine any person with that preference. One
does not have to be chipper and perky in order not to
be a somber and morose damper on life and a killjoy.
Orli rejected her; the woman disappeared. (After
Orli died, I wrote to the hospital ombudsman asking why
child life had not shown up for her in a meaningful way.
I offered to come in to speak to the teams about the
delicacy of emotional needs at the end of life. Nothing
ever came of it. The head of child life did not respond
to emails. Nothing like
apathetic department heads or uncaring ombudsmen,
which ought to be an oxymoron.)
Meanwhile, a tumor we’d seen on scans
months earlier suddenly compressed Orli’s spinal cord.
She was unable to stand or walk, and was rushed into
radiation. Representatives from the rehabilitation
department arrived and suggested Orli might benefit from
weeks of inpatient rehab. When I saw our oncologists, I
told them: Rehab stopped by. I don’t understand. How
much time do we have? They said: We’re so glad you
brought that up. We don’t know.
I mulled this over and over: If her
primary care team now believed she was actively dying,
why had rehab come to see us? Why had I been the one who
broached the question of time? --
particularly because the amount of likely time left is
important for knowing how to spend it, and whether to
indulge in immediate gratifications or to defer them
and instead invest in longer term ones that took time
to develop. Of course, the shock of finding out
death is closer than one would like is emotionally
difficult and even probably traumatic at first, but it
is necessary information for coping with the process
in the best way, given that the process will be
inevitable and at some point pretty obvious. As
Ms. Wildman points out, at the end of the article "It’s not sadness we should fear. It’s
regret." And probably the most important factor
in avoiding regret is having the necessary information
to make the best, and therefore least regrettable,
choices in the first place.
The lack of psychological support in
the hospital meant that it was only when Orli was
discharged that she truly understood her new
limitations: She would never walk from the car to the
house on her own again; she would not swing her legs
over the side of the bed and adjust her shelves to her
liking; she would not film a new dance; she would not
step outside, stand or bathe unassisted. That pain far
transcended the physical. And
that is when one must find, and be helped to find, new
goals and new joys to pursue with just as much
satisfaction possible. Even normal, healthy
aging requires doing that. I once told my father (who
had been very athletic in his youth) that I now had
cool dreams in my sleep where I ran long distances
with ease and they had replaced the cool dreams I used
to have that I could fly. He said "Just wait;
some day you'll think it cool to dream you can walk
well." When Harry Reasoner interviewed Federico
Fellinion 60 Minutes, he asked him,
while they were sitting in a beautiful, lush courtyard
of a magnificent villa, that now that he was older and
having lived such a full life, was it better to be his
age now or did he have any regrets about no longer
being young. Fellini put his head to his hands
in thought for a few seconds and then said "My only
regret is I can no longer make love 10 or 12 times a
day." Reasoner flinched and gulped and then said
with astonishment "You used to make love 10 or 12
times a day?!!" Fellini pretended to think about
it again for a few seconds and then said, with a big
grin "Well, maybe it was only four or five." He
had pulled Reasoner's leg, and probably still was, but
the point is that one has to adapt to whatever is
causing one to lose one's powers; and generally we can
do that, and, in fact, do.
It’s worth noting that
pediatric palliative and end-of-life care has made
tremendous strides in the last quarter-century.
In 2000, Dr. Joanne Wolfe, a
pediatric oncologist and palliative care specialist,
collected testimony from families of children who had
died of cancer between 1990 and 1997 at Boston
Children’s Hospital and published a major retrospective study of
palliative care in children’s oncology. The report was
devastating: “Eighty-nine percent of the children
suffered ‘a lot’ or ‘a great deal’ from at least one
symptom in their last month of life, most commonly pain,
fatigue” or difficulty breathing, they wrote. And these physical harms are half of
the suffering that need ways found to not only
minimize but to make worth enduring and able to be
endured in order to
allow whatever good things remain be sufficiently
worthwhile to experience.
Dr. Wolfe’s study “really shook the
pediatric oncology community” said Sarah McCarthy, a
psychologist focused on pediatric oncology and
palliative care who lost her 5-year-old daughter Molly,
an identical twin, in 2022, to complications
from treatment for leukemia and neuroblastoma. The
question that began to haunt those in the field, Dr.
McCarthy told me, was, “How do we better take care of
those patients where the goal is not cure or where cure
is not going to be possible, especially in the last
weeks and days of their lives?” --
always the question for anyone ill, incapacitated, or
dying; at any age.
Dr. October, the intensive care
specialist, trained in critical care in the early 2000s.
At the time, she said, “I realized I did not have the
skills to communicate empathetically with families at
their most vulnerable time.” A so-called bedside manner
was perceived as something innate, not learned. We now
understand better, she said, that the practice of
palliative care — of active listening, of being present
— requires training. --
then train everyone; it is not that hard; and even
doctors not involved in end of life care need to be
able to "listen to their patients" so that they are
doing what is best for them, not just treating their
conditions in some standard, clinical way. Of
course, even good listeners will not always get it
right. But at least they have more of a chance
to get it right.
As for palliative care with
children, although listening, heeding, and having
empathy are necessary qualities, one must also have
much to offer to help make the process better and
easier for children or for anyone who is dying.
That is what their loved ones will be wanting when the
time comes they realize the patient is on that hospice
physician's "downward slope."
Palliative care only recently became
a medical subspecialty in pediatrics, and insurance coverage for this
kind of care is patchy and confusing. Not every
critically ill child receives palliative care. And while
most everyone agrees that a child at the end of life
should not experience pain, there is ambiguity about the
squishiest aspect of that mandate: psychic pain -- mental anguish; sorrow and
emotional suffering about one's continuing
deterioration and impending death. Those are the
other half of what need to be sufficiently overcome to
make them worth enduring, and able to be endured, in
order to allow whatever good things remain be
sufficiently worthwhile to experience. And, come
on! Always try to ameliorate any kind of
suffering. There should be no "ambiguity" in
that and no suffering is "squishy", whatever that even
means, presumably "not worth bothering about", which
would be false.
In 2008, Victoria Sardi-Brown’s son
Mattie, then 6, was diagnosed with an aggressive bone
cancer. “Mattie was treated at three different hospital
sites, and at each hospital site the level of emotional
and psychological care that he had access to varied
tremendously,” Ms. Sardi-Brown told me. True in general; people are often
idiots or insensitive, even cruel.
Following Mattie’s death, Ms. Sardi-Brown and her
husband, Peter Brown, founded the Mattie Miracle Cancer
Foundation. In 2012, the foundation organized a
symposium on Capitol Hill, where it demanded the
development and implementation of evidence-based
standards and a minimum level of psychosocial care —
from diagnosis through remission or death — for
critically ill children. (Palliative care, despite its
reputation, addresses quality of life and pain
associated with disease throughout the course of
critical illness, not only at the end of life.) The 15
standards, published in the journal Pediatric Blood & Cancer,
insist upon periodic psychological assessments of both
patients and their siblings. They also mandate that
“psychosocial professionals should be integrated into
pediatric oncology care settings as integral team
members.”
“The challenge was after these
standards came out — and they were very often cited —
people didn’t know how to implement them,” Lori Wiener,
the lead clinician and researcher on the standards
development team, told me. Follow-up studies noted
financial barriers to large-scale implementation -- of what? people being nice and
humane? -- that has begun to change,
albeit slowly.
There are hospitals doing
this well. I first reached out to the neuro-oncologist
and pediatric palliative care specialist Dr. Justin
Baker, then at St. Jude’s, when Orli returned from that
last hospital stay. He advocates an integrated,
interdisciplinary approach to palliative and end-of-life
care for children in oncology that, among other things,
pulls in bereaved families as teachers.
Dr. Baker says he is in the “regret
prevention business,” --
presumably by doing one's best to do right things in
the first place, including not being inconsiderate or
negligent -- an idea I also heard from Dr.
Wolfe. That means, for example, discussing with a
child’s medical team what the real drawback of delaying
treatment by two weeks might mean, while a child is
still well enough to travel. Life experience might be
more important than chemotherapy or surgery, which are
not guaranteed to extend life (and will certainly make a
child temporarily miserable). This is less intuitive
than one might think: Doctors are risk-averse. -- to what that has to do with this?!
Dr. Baker, now at Stanford,
underscores the need for a family to recognize that time
is limited, rather than fighting that limited time. To
measure time in teaspoons rather than gallons goes
against every parenting instinct --
but should be easily understood upon being told it.
But such recognition can allow more of those final
moments to matter -- yes, and be
used in the best way for the child (or any patient).
This work fits with what BJ Miller, a
nationally recognized expert in hospice and palliative
care, says makes for a “good” hospice. That would be
both quick delivery of medication or equipment (which we
had), as well as, effectively, “a crew of people,”
including doctors, nurses, social workers, chaplains,
art therapists, even volunteers, skilled at
communicating (which we did not). That means, Dr. Miller
said, “potentially hours and hours of conversation and
processing and reflecting.”
This work does not end when a child
dies. The St. Jude’s program was created with the
assistance of bereaved parents like Wendy Avery, whose
15-year-old son Nick died from leukemia in
2006. At the time, she told me, many hospitals had
parent-to-parent buddy programs that simply dropped
families whose kids weren’t going to survive. Ms. Avery
is now on a committee that mentors families going
through transitions in care, as well as newly bereaved
families. It also matches bereaved parents with doctors,
teaching them how to give hard news.
“When we were first starting this,
there was so much pushback,” Ms. Avery told me. “The
employees at the hospital, especially the doctors that
took care of our kids, felt like they had personally
failed our kids.” Changing that took time. “Now the
program is huge,” she said, “and it’s very well
supported.” So, tell that to
people you want to train.
Every study on the subject I’ve read
has found that the only way to mitigate the terrible
comorbidities associated with losing a child — prolonged
grief, anxiety, depression, inability to work, suicide,
heart disease, untimely death — is with therapeutic
intervention with a family in the time before a child’s
death and then early, consistent grief work after.
Support for a child and her family — including posing
and then facing questions about the end of life, and how
to live when life is suddenly bounded — can help a
family better face life after a child dies -- and should be common cultural
knowledge that we should all know to try to do and
have at least more than a little ability to do
reasonably well. But investment in this
area continually falls short --
it should not take that much "investment" to help make
this common knowledge, but I realize there is a dearth
of ethical understanding in general.
This spring, a landmark paper in The
Lancet underscored how bereavement care is not a luxury
but a public health necessity. Such care, however,
remains far from universal. The result is that during
critical illnesses families become dependent on a war
room of professionals caring for their sick child, only
to find themselves abandoned when the child dies. “Given
health-care institutions cultivate this dependency on
their systems throughout the care trajectory, it should
be incumbent on these very institutions to address grief
needs before and after a patient’s death,” the authors
wrote. But everyone should
always do this for each other anyway.
After Orli died, we had little
contact from the team we had spent some 1,300 days with:
There were text messages from our beloved primary
oncologist the day of her death, but no follow-up (until
we asked for one, weeks later). A smattering of
individual providers mailed us notes, some incredibly
moving. The oncology unit sent a card, about 100 days
after her death. In late spring, I ran into one of
Orli’s oncologists on the street. I told her about
Orli’s funeral. She cut in: I was there, she said. She
hadn’t wanted to bother me. She didn’t understand how
much it would have meant to us to know. And she should have asked what your
personal preference would be about it, just like
finding out whether any friend or acquaintance in the
hospital prefers to have you visit or not to visit
them. You cannot generally assume someone would
want your presence or not want your presence when they
are incapacitated or grieving. It is not always
easy to know what other people prefer or want (and
they might not even know themselves), but one should
endeavor to find out in those cases where it is not
obvious.
Later, while doing reporting for this
story, I found out that the hospital recently held a
memorial service for the children who had died in 2023
and 2024, including Orli. No one had contacted us.
Boston Children’s Hospital, where
Orli received her liver transplant, is one of a few
hospitals that offer continued support to bereaved
parents. In the past year we have found sanctuary hours
from our home in a family bereavement program at the
Hole in the Wall Gang Camp, a project started by Paul
Newman for critically ill children 36 years ago. Such
programs are reliant on philanthropy, as well as social
recognition of child death, the trauma that preceded it
and the lifelong impact of this loss.
I keep coming back to something Wendy
Lichtenthal, a lead author of the Lancet paper, told me:
Our culture has a profound lack of “grief literacy.” Yes!!
Medical teams may fear death, but so
does society, in a cycle of suppression and evasion that
ultimately fails us all --yes!!
It is why so many of us feel so alone when death and
grief come.
At one Shabbat we hosted earlier this
year, the young son of friends had a question. “There
are two children in all the photos on the walls,” he
said, “but only one here. Why?” The room seemed to stop
breathing.
“Yes,” I told the boy. “There are two
children in the photos, and one child here. It is very
sad.” I worried: What was I allowed to share? His mother
turned to me, concerned. “Will it upset Hana if he asks
questions?” No, I said — it’s far stranger when no one
asks at all. We talk about Orli every day.
I developed a working theory over the
course of Orli’s treatment that the American ethos that
hard work leads to success rendered facing death, let
alone dying, incomprehensible. How could we go through
something this difficult only to find ourselves,
ultimately, someplace worse? -- except when stated directly like
that, surely people would realize it is false that
hard work is incompatible with death, shouldn't
they? And don't people know that, and even know
that people can "work themselves to death", let alone
meet death in any of a million other ways no matter
how good they are. One common question even is
why bad things happen to good people. Surely
that shows understanding that death is not
incompatible with goodness or with hard work.
Just before the anniversary of Orli’s
death, I went on a walk with her middle school
administrator. We talked about how, in Orli’s final
months, I asked her to help me encourage students to
call or text or visit. It seemed there was little
urgency to see her. Orli had been out sick before; she
always returned. How could it be otherwise? In the last
days of Orli’s life, this teacher took it upon herself
to bring groups of girls to our home, in her own car,
during school hours. Later, she berated herself: Why
hadn’t she done so sooner?
In removing death from the rhythm of
life, we have created “a grief-phobic and death-denying
culture,” the psychotherapist Francis Weller told me.
As a society, we need to reconsider
why we are shielding our children — and ourselves — from
death and dying, and what we lose when we do. We need to
turn toward, rather than run from, the people who know
this terrible world best: bereaved parents. To do so
would allow our children a means of leaving a mark on
this world.
“We need to be taught how to be with
grief,” Mr. Weller said to me, “which means we need to
witness it as we grow up.” He went on: “And for the most
part, we don’t see it. It’s cloistered, it’s segregated,
it’s pushed to the side. So when it does show up, we
don’t know how to meet it in any meaningful way.”
Yes, but this is true of most
emotionally intimate or personal aspects of life, not
just death but other things as well, some even joyous
such as sex. For as much porn and jokes as there
is about sex, and a certain amount of "how to
techniques" books about it, there is relatively little
about the emotional aspects of it; and we tend to say
any discussion of it is unwelcome TMI (too much
information). Americans are not, on average,
good about understanding or communicating with each
other about emotions of a deeply felt, but
individually, personally experienced nature. Not
on a deeper philosophical or psychological level
anyway, though, perhaps oddly enough, comedians
sometimes raise and discuss them in ways that at least
show some commonly shared experiences and
understanding. Good literature, including movies
and TV dramas tend to do that to a certain extent
too. But the fact remains, we don't do it much
or well as a society.
Recently, a friend of Orli’s gave me
a tremendous gift: the knowledge that Orli had tried to
prepare herself. Four months before her death, Orli
texted this friend to say she knew she would not
survive. She believed she had two years left. “I’m going
to die,” she wrote. “But doesn’t everyone? I just will
die a little sooner than most. This is a great
opportunity for me actually. Everyone’s focused on the
time they have left. They forgot to live.”
That she could face what we could not
is not entirely unusual. Some psychologists have pushed
for allowing teens and young adults a role in
determining not only the course of their care but also
in how they live their days, and how they die -- of course, since they will be the
ones most affected, although that doesn't mean every
decision or every kind of decision they make will be
right or should just be accepted without rational
disagreement. This population, I
learned, has a strong sense of their own trajectory;
they are known for trying to protect the emotional
well-being of their caregivers. Indeed, after she died,
I found out that Orli had worried most about what would
happen to us — Hana, Ian and me — if she were to leave.
I offered her no reassurance. I didn’t know these were
her fears. I learned of them too late.
She and Ian spoke about death more
than I did — what happens, where do we go, is there
something more, will we ever see each other again? I
wish I had been in those conversations. Still, I am
comforted that they took place.
I myself find the questions of
what happens, where we go, and how loved ones left
behind will cope to have something in common, because
we could just as equally ask what it was like for us
before we were conceived, where were we, and how did
our loved ones cope without us before conceiving us
and giving birth to us or meeting us. In a way
it is odd that we don't worry about the zillions of
eons, the infinite amount, of time 'we' spent prior to
our conception, or even prior to our earliest memories
of life; we don't generally regret that we weren't
born much sooner, and may even wish we were not
conceived until later so that we could be alive to see
the future. And, apart from people unable to
conceive babies they want to have, people generally do
not miss the children they don't conceive. They
consider the ones they have to be quite
sufficient. But once we invest our own time and
energy in having and raising children and get to know
the lovable things about them, we do miss them when
they are not around in a way that is nothing like not
having around the ones we never conceived.
Everyone, even children, deserves the
opportunity to sit with these questions at the end of
life. It’s not impossible. But to do so requires us to
recognize: It’s not sadness we should fear. It’s regret.
As I said
before, regret is often about not having done what we
think we should have, especially if we knew we should
have at the time but didn't. But there is also
profound regret that a loved one will not get to have
or witness those great experiences we know they would
have enjoyed. What should be kept in mind,
however, is that they will not have to go through the
sorrows, anxieties, and disappointments that they
would have had to if they had lived. Moreover,
we don't regret that the children we intentionally
never tried to conceive nor wished to conceive will
not have the same joys. All this says a lot, I think, though I
don't know what specifically, about how we view
existence and non-existence. We wonder and worry
about life after death for ourselves and our loved
ones but not about life before conception. We
don't worry about how our parents got along without us
before they conceived us, and we don't worry about
what it was like for us before we were conceived.