Professional Documents
Culture Documents
Caring Moments:
focused on children and families confronting life threatening illness. I often find myself asked
strategies. Few people ask about the actual day to day work as a clinician working with such
patients, and those who do ask seldom expect a response involving much emotional depth. Over
the years I have felt the need to keep a personal journal as a way to organize and manage my
own reactions to the work. The excerpts that follow comprise representative entries over a six
month span, and offer a flavor of the work that one seldom has the opportunity to share with
others.
I step onto the pavilion elevator in the basement headed to oncology rounds on the eighth
floor. The doors open on the fifth floor, just outside the medical intensive care unit. A young
couple steps into the car. They look to be in their thirties, headed out of the hospital, and do not
notice that the elevator is headed in the wrong direction. It is obvious that they have been awake
most of the night. He has tried red eyes, she sobs quietly. She is clutching a clear plastic trash
bag containing a small pair of sneakers and other articles of clothing for a young boy. I know
immediately that their child won’t be needing those any more. The three of us are together in
the elevator, but alone with our thoughts. The ride up to the eighth floor lasts about 15 seconds.
would feel too much of an intrusion. The doors open on the eighth floor and I head down the
I pull into the hospital garage and head to the basement looking for a parking space. The
oncology case review meeting doesn’t start until 8:00, but two of my patients are on the list for
review today and I want to scan my case notes. There is only one other car in the basement, Dr.
Steve’s BMW. I pull into the adjacent space and as I get out of my car, I notice a pile of
medical records stacked on the passenger’s seat of Steve’s vehicle. The top two are stamped
“deceased” in bold red letters. He's carrying his work home, trying to learn from the kids who
don’t get better. I’m not really surprised. He’s that kind of doctor. His patients love him. He
takes the time to talk with an explain things to his patients. His technical reputation as a second
generation physician and pediatric oncologist is stellar, but is dedication is off the charts. Most
When I walk into the dictation room and switch on the light Steve startles. I had not seen
him sitting in a carrel at the end of the darkened room. He has clearly been crying. I ask if I can
help and he tells me about the death of a patient a few hours earlier. She had come into the
clinic the afternoon before with fever and nutropenia, low immune cell count as a side-effect of
chemotherapy. Overnight the fever fulminated out of control, the six year old girl suffered
massive organ failure, and died about 2:00 a.m. “She was not supposed to die!,” Steve says
pounding his fist on the table. “She was cancer-free, her leukemia was in remission. She was
He looks at the clock. It’s 8:05 and we are both late for rounds. As we walk into the
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clinic the waiting room has begin to fill with the day's patients and Steve puts on his sunglasses.
He does not want the patients and parents to see his reddened eyes. One of the teenaged patients
observes, “Hey, Dr. Steve, wearing your shades inside the days?”
Steve replies, “Oops, must have left my regular glasses in the car this morning.
Alex has cystic fibrosis with severe lung disease and has been “listed” to receive a lung
transplant for several months. He is 14, but much smaller than most boys his age, waiflike and
frail. He no longer attends school, he tires and becomes short of breath easily, and the winter
colds and flu prevalent in places where children gather could be fatal to him. Alex doesn't sleep
well despite a constant flow of oxygen through a nasal canula. He reports waking often during
the night with occasional visions of himself lying in a coffin. He tells me that he can feel his life
slipping away and cannot put this thought out of his mind even briefly. He says that talking
about it helps a little, but efforts at distraction, relaxation, and other behavioral strategies are of
little help. I call him regularly each night between 10 and 11 p.m., since that’s when he is most
anxious. His mother works the night shift at a local factory. I can listen and encourage him, but
that’s not of much help. Organs his size and blood type are too few and far between. That is
what he’s afraid of and what those who take care of him fear, but we try to offer hope and
Tina is an 11 year old, sixth grade student from Rhode Island. Like Alex, she too has
cystic fibrosis. She too is on the transplant list. However, her condition is described as only
“moderately severe,” rather than "critical." I find myself wondering whether those terms
constitute a meaningful distinction. This morning the transplant pager that her mother has been
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carrying for months went off. Mom verified the alert, called Tina’s dad at his office, grabbed
the small suitcase that has sat by the door for months, and headed over to pick Tina up at school.
The hour-long drive to Boston seemed way too fast for Tina.
As specified in the pulmonary transplant protocol, Tina can have nothing more to eat or
drink. She does not stop at the admitting office, but goes directly to the intensive care unit. The
“harvesting team,” another wonderful medical euphemism, is en route by private jet from Boston
to Milwaukee where the donor lungs are waiting. The parents of a pre-teen child who is brain
dead following an automobile accident are trying to make something positive come from the loss
of their son by donating his organs. Tina and her family sit in the ICU and wait. Lungs are the
most unforgiving of transplantable organs and time is especially precious. If word comes that
the lungs are suitable, Tina will be prepped for surgery and removal of diseased tissue will begin
as soon as the lungs are on the ground in Boston. As we wait together, Tina tells me that she
thinks maybe it is “too soon” for her to get new lungs. She knows she needs them, but there is
A phone call comes in from Milwaukee. The surgeon sent to retrieve the lungs
performed a bronchoscopy and, “didn’t like what he saw inside the donor lungs.” The organ
donation was declined by the medical team. Tina’s parents heave a sigh of relief with a tear in
their eyes. Tina softly cheers, “Yea,” and they head home until the pager goes off again.
Alex got his new lung on Martin Luther King Day. I found a certain irony to that. Alex
is African American, yet the origins of the recessive gene that caused his cystic fibrosis is
thought to be of Northern European origin and was almost certainly contracted from white
ancestors, possibly salve owners, generations ago. Somehow his chance at survival came on this
uniquely symbolic day. My optimism was not rewarded. Because of the severity of his disease
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and rarity of his blood type the surgeons tried to use a portion of a lung from a much larger
suitable adult donor. The graft failed and Alex died two weeks later without ever regaining
consciousness.
Today is my second family session with Sid, Peggy, and Mandy, their 14 year old
daughter. Eight weeks ago their son and brother, eleven year old Zack, was killed by a drunken
driver on the street in front of their home. The family members have become isolated in their
grief over the past few weeks. As though by some unspoken agreement, no one talks about Zack
at home. When our bereavement program reached out to them, Peggy convinced Sid and Mandy
to participate.
This week the family members had a homework assignment. Each was to bring a
reminder of Zack, but not discuss their object of remembrance with each other in advance. I
have often found this a useful way to bring the reality of the loss into the therapy room, while
allowing each family member a degree of control. Peggy has a photo album, Sid a catcher’s
mitt, and Mandy a purple backpack with her name stitched into the back flap with silver threads.
I ask who wants to go first, and Peggy opens the photo album. We look at Zack’s baby pictures,
and trace his path through birthday parties, first days of school, and Little League games. Sid
rubs the black leather glove, and recounts the high points of last year’s games, his voice
breaking and trailing off. I turn to Mandy and ask what she brought. She unzips the backpack
and pulls out shoebox emblazoned with a popular athletic shoe logo. Almost in unison, Sid and
Inside the box rests an industrial strength, clear plastic, zip-lock bag full of brownish-
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gray ash and small bone fragments. Sid and Peggy had decided to have Zack cremated, but
could not bring themselves to discuss disposing of the remains. The easy solution for Sid was to
put the ashes in the box and stash it on a back shelf in the large walk-in closet off Mandy’s
bedroom. No one discussed this with Mandy, and both parents assumed she remained unaware
about the “temporary storage” site. It should come as no surprise that teenaged girls usually
know the contents of their closets quite. Mandy told us that, when she missed Zack, she would
sometimes sit inside the closet, close the door, and feel close to him. Everyone’s eyes are moist.
I suggest that perhaps the family I ready now to talk together about what to do with
Zack’s remains. For the first time in weeks they feel like a family again, as they try to take each
other’s sense of loss and emotional needs into consideration. They decide to pick out a more
appropriate receptacle together, and to think about a permanent resting place. As we finish the
session, Mindy jokes, “I guess Zack’s out of the closet now.” Sid and Peggy laugh for the first
time in weeks.
The weather today is dismal; chilly and rainy. It's not a great day for a wedding in
romantic terms, but perhaps it matches the theme for an intensive care unit wedding. Jason and
Rita don’t care about the weather. It’s been a bit more than a year since Jason’s lung transplant
at age 19. Unbeknownst to the surgeons, the donor lung had CMV (cytomegalovirus) and Jason
experienced chronic rejection of the donor lungs followed by "OB," pathologist shorthand for
bronchiolitis obliterans. OB involves a chronic scarring process affecting the small airways of
the lung resulting in progressive obliteration of the airways and obstructive lung disease. His
condition started deteriorating badly over the weekend. Knowing that his death was near, he and
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Weddings are not common events in intensive care units, let alone the ICU of a
Children’s hospital. The small dimly lit room was packed with half a dozen temporarily
silenced electronic monitors, relatives of the bride and groom and the medical staff, including
the head of the transplant service, the surgeon, and the psychologist who had known Jason since
age seven. A young priest from Mission Church five blocks away had been called in to officiate.
He spoke in a patient, soft, and peaceful voice. When the time came to say, “I do,” Jason had to
I am on the way to the parent’s lounge area where the family on one of my patients is
awaiting word that his surgery has ended, It is a very hot day and the air conditioning in the
corridor is not up to par. I see a tall heavy set woman dressed in black pants and a long-sleeved
black jersey pacing slowly; actually trudging back and forth, in the hallway near the room where
the circulating nurse gives parents updates on their children’s surgery. A well-worn plush toy
puppy is hung limply over her shoulder. She holds a silver I.D. bracelet in her hand, fingering it
carefully like a set of rosary beads. She is quite oblivious to the people around her; deep in
thought, her mind most likely focused oh happenings upstairs in the operating suite. I think of
stopping to offer some supportive words, but I do not know her or her story, it would seem
Coping
particular. The first one begins on line to a surrealistic theme park roller-coaster thrill ride. As
the line winds slowly toward the start of the ride I notice that I'm standing among friends,
patients I had treated before they died from cancer. Suddenly we are on the loading platform,
and I notice a sign with large red letters: "WARNING! Up to 40% of riders fall to their deaths.
Check your safety bar." I find myself seated in last seat of the back car. I pull the safety bar
toward me and hear a reassuring "click," as it snaps into place. As I look up the car begins to
roll down the chute, and I notice that many of the riders in front of me have not secured their
safety bars. I feel a desperate urge to reach out and help, but I am locked in my seat and cannot.
We plunge into darkness that is broken every few seconds by the flash of a strobe light. With
each flash I see more empty seats in front of me. There is nothing I can do.
The second dream takes place in Joey's hospital room. He's five years old, alone,
desperately ill, and very sad. He does not talk about his illness and can hardly pronounce
"aplastic anemia" anyway. Still, he knows that he's been getting sicker for the past few months,
and has had to live in sterile isolation for several weeks because of a weakened immune system.
Everyone who visits him must be gowned, gloved, and masked. No human skin has touched his
since he entered the sterile environment. He looks me in the eye and asks, "Where are you." I
wake from the dream in a sweat, it's 4:00 a.m. I've been home in bed for four days recovering
from a bout with mononucleosis. I feel an urgent need to call the hospital, and despite the early
hour dial the nursing station. I ask about Joey, and the charge nurse hesitates for a moment, then
says softly, "He died in his sleep two hours ago. We knew you were out sick and were going
One need not review Freud's essays on dream interpretation to recognize what is
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happening. The rational desires to help and to comfort are trumped in sleep by the magical
wishes to meet every need, to cure, and even to stave off death. My cognitively oriented
colleagues have a solution, "positive self-talk." I remind myself that I'm a good-enough
therapist, that no one can (or should try to!) worry about meeting every patient's needs, that my
work helps improve quality of life for critically ill children and their families, and that
psychotherapy can not, after all, cure cancer. Some times it works. Then I think about
Matthew.
Matthew was referred to me for evaluation and then out-patient therapy because of severe
behavior problems, including an attempt to hang himself in a school closet, where an angry
teacher had locked him. When I first met Matthew he was physically healthy, but his life was in
chaos. At eight years old his family was festering through a bitter divorce and he soon found
problems. I continued to see him twice a week. Then came the persistent back pain and the
diagnosis of an invasive tumor near his spine. Surgery, "got most of it." The medical prognosis
was, "guarded." Radiation and chemotherapy followed, along with more than one fist fight
between relatives in his hospital room. Three years, and many therapy sessions, later Matt was
able to re-enroll in regular school and try to resume a normal life. There were other bumps in
the road; the need for spinal surgery and a steel rod to support weakened bones, continued
family crises, and fears of late-effects from chemotherapy, including cardiac toxicity. Our
weekly treatment sessions tapered off, but each time a new stressor cropped up another session
or two seemed to help. Two years ago Matt graduated from college with honors and a handful
of job offers. He's mentioned more than once that I've helped him get there.
are surprised to hear that I have regularly treated children and families confronting life-
threatening illness for close to thirty years. That tends to be a real conversation-stopper. I
seldom go into detail about the cases, but the usual reply is, "I don't know how you can do that
kind of work." I remember Alex, Tina, Jason, Joey, Matthew, the kids in line for the roller
Related Reading
Bronfman, E. T., Campis, L. B., & Koocher, G. P. (1998). Helping Children to Cope with
Koocher G.P. (1979). Adjustment and coping strategies among the caretakers of cancer patients.
Koocher, G.P. (1980). Pediatric cancer: Psychosocial problems and the high cost of helping.
Koocher, G.P. (1986). Memorable Patients: A Contrast Effect. The Psychotherapy Patient, 2,
39-44.
Koocher, G.P. (1986). Psychosocial Care of the Child During Acute Cancer Treatment.
Koocher, G.P. (1986). Coping with a Death from Cancer. Journal of Consulting and Clinical
Meyer, E.C., DeMaso, D. R., & Koocher, G. P. (1996). Mental Health Consultation in the
Pediatric Intensive Care Unit. Professional Psychology: Research and Practice, 27,
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130-136.
Williams. J. & Koocher, G. P. (1998). Addressing loss of control in chronic illness: Theory
Williams. J. & Koocher, G. P. (1999). Medical Crisis Counseling on a Pediatric Intensive Care
Unit: Case Examples and Clinical Utility. Journal of Clinical Psychology in Medical
Settings, 6, 249-258.