caring for family members
From: Michael Klein (mklein@unixg.ubc.ca)
Thu Apr 18 23:16:20 1996
Dear folks: I have previously posted this LONG POST to the NICU and
Family Practice lists and have been urged to post it here too. It is long
but may resonate with many of you. I would appreciate advise on what to
do with it.
--
Michael Klein, M.D., F.C.C.F.P., F.A.A.P.(Neonatal-Perinatal), A.B.F.P.
Professor Departments of Family Practice and Pediatrics
University of British Columbia
Head Departments of Family Practice
British Columbia's Women's and Children's Hospitals
Vancouver British Columbia, CANADA
Tel: (604) 875-3441 Fax: (604) 875-3435
E-mail: mklein@unixg.ubc.ca
12 April 1996
Michael Klein, MD
In the land of the giants: a family physician's adventures in
dealing with illness in close family members
"You be the son/husband, and let me be the doctor."
How many times have I heard that refrain, sometimes from an
attending physician, sometimes from the family doctor of one of my
family members and recently from internal medicine resident house
staff. My usual response, sometimes out loud or muttered under my
breath: "Right, if you would be the doctor, I could be the
son/husband or whatever you think I should be."
Where does this idea of the complete dissociation of the role of
family member from physician/family member come from? What is so
improper about a physician being involved in the care of his/her
loved one? Is it about the well-known clouding of judgement when a
physician looks after a family member? No argument there, judgement
is clouded, perspective is lost. Thats why physicians should not
be the physician for their families or close friends.
But the issue is never simple. What about the family doctor who is
the only physician or one of a small number of doctors in a small
town--and they cover each other? And what about emergency
situations?
Does this unwritten rule mean that the information provided by a
physician family member is wrong, distorted, suspect? Or, that this
information needs simply to be heard, digested and integrated into
the synthesis of the problem.
And how does the responsible medical staff deal with the involved
physician family member. Do you seek information? Do you invite
him/her to be present at rounds?. Do you let/encourage the
physician family member to see the chart? Do you report
investigations and lab tests to him/her in general terms, provide
the specific numerical results or do you exclude him/her from the
loop? And what exactly is the difference between giving a non-
medical family member feedback in terms that they can understand
and providing more technical oriented feedback to a family member
with medical background? Isn't it just a question of providing
information at the correct level for the specific recipient?
So what is the problem? I think its about fear, fear that we as
professionals will be found wanting, that we might be found to be
not quite on top of the case. Its apparently difficult for some of
us to say "I don't know," to be seen as less than omniscient.
Diagnostic and therapeutic ambiguity, while a normal part of
medical practice life, may be more difficult to acknowledge to a
co-professional who is him or herself a patient/spouse/parent. Or
perhaps its the deeply held belief, taught to generations of us,
that its medically correct to exclude the physician family member
from the care process.
Case #1: My wife Bonnie is in the ICU, eventually spending nine
weeks quadriplegic, on a respirator and "locked in." Her
nasoduodenal tube repeatedly becomes dislodged either by accident
or because she unconsciously pulls it out during her recovery
phase. Many hours go by waiting to have it reinserted, but she is
getting her fluids calories and medications by that route. House
staff are busy, short staffed. Its low priority. Many of the house
staff are not very good at the task and they inadvertently cause my
wife great distress. What do I do, let them practice until they get
it right? Just wait? No, I slip it in myself. Some nursing staff
are scandalized, others encourage it and are pleased. Some house
staff think I am a lunatic, others ask to be taught.
Bonnie is slipping into respiratory failure, in retrospect because
of a mass impinging on the respiratory centre in her brain stem.
Its the weekend. I am alone with one of my own first year family
practice residents who is cross covering neurology. Our trusted
neurologist friend has left for vacation. The covering neurologist
from a near-by hospital never comes in to see the patient. I am
sleepless, have no energy left and am giving up, certain that I
will loose her. The family practice resident organizes the
reluctant support and subspecialist staff, most of whom think that
Bonnie is going to die anyhow--though each feels from a different
disease. The head of neurology thinks that she has a fungating
malignant destructive lesion that is migrating in the brain stem.
The head of neurology at a sister institution thinks that it is a
rapidly destructive form of MS (MS is his speciality) and
recommends a cytotoxic drug, which is given. The immunologist
thinks that it is a severe form of autoimmune vasculitis and
recommends plasmapheresis and high dose steroids, which are given.
Consultants are postulating multiple and concurrent illnesses. I,
on the other hand, simplistic soul that I am, can't understand why
it cannot be a bleed in the brain stem, a diagnosis that would tie
it all together--but the MRI that would have settled the matter is
not recommended by the neuroradiologist, since its a scarce
resource and what would that point anyhow, the hypothesised
location being surgically unapproachable. I am looking for a single
fixable lesion. I push for the MRI. My specialist colleagues feel
that I am over involved and unrealistic. They reluctantly agree to
the MRI, probably to get me off their backs.
We are about to take the ambulance to another centre for the MRI
exam. I ask the ambulance attendant about the method he will use to
suction the tracheostomy. He states that he has an electric vacuum
suction device. I ask: "what happens if it fails?" The reply: "It
never fails." Suspicious bastard that I am and a firm believer in
the many versions of Murphy's Law, I ask to delay slightly while I
run up to the delivery suite to obtain a few DeLee oral suction
traps so that we will not be dependent on machines, Bonnie
requiring regular tracheostomy suction. On the way to the MRI the
suction machine fails. I suction the trach till arrival at the
hospital.
We are about the enter the MRI chamber. The technician says that
the test cannot be done. The respiratory tech who came with us, for
reasons I can't recall has returned to our hospital. I think she
thought that the other hospital would supply respiratory support.
I am bagging my wife by hand while local politics are sorted out.
They never are. The MRI technician states that Bonnie is moving too
much and ventilation by bag and mask has never been done during a
MRI. He is right, as the metal parts cannot be used in the magnetic
field. Fortunately Bonnie does not need continuous ventilatory
support, only intermittent, as she is breathing shallowly on her
own through the trach. I implore him to let me ventilate Bonnie in
between MRI cycles, while he holds her steady from the other end of
the tube. Reluctantly he agrees. The technician obtains an
acceptable study and is pleased with his efforts, so stiff from the
one and a half hour ordeal that he can hardly stand.
The MRI shows the lesion. I am an amateur but to me studying the
films while awaiting transport back to our hospital, it looks
vascular but encapsulated and benign but in a very bad place. I am
alone again, no physician to share the agony, staring at the view
box. The ambulance arrives. Back at the hospital, consensus is that
the lesion is inoperable. Whats to lose? Bonnie is dying. She will
likely have another bleed. She has already had two. I organize the
transport of multiple MRI copies to neurological friends and
colleagues around North America. A surgeon is located in London
Ontario who is ready to operate, having practised on dogs and is
awaiting the right patient. No one has been that low in the brain
stem before. Patients usually die a respiratory death before the
surgeons get to them. Bonnie flies on a respirator to London by air
ambulance. Even though there is space on the aircraft, I am
prohibited from accompanying her and assisting with her care. "Its
not done." I follow with my daughter many hours later on a
commercial jet, not knowing if Bonnie is still alive.
Bonnie is in the ICU on a respirator and her tracheostomy needs
frequent suctioning. To do this, the respirator needs to be
disconnected and she needs to be bagged by hand while the cleaning
takes place. I have run neonatal intensive care units for many
years and am not bothered by the hardware. Nurse #1 asks me to
leave, says that she cannot do her work with me there. Nurse #2 and
3 integrate me into the care, never a question of who is in charge,
he/she is. These nurses recognize that they need help and working
with me not only makes their job easier but it is actually
"treatment" for me. As long as I feel that I am contributing to the
care, I am psychologically better off and more able to be in shape
for my wife.
Bonnie has had successful life saving surgery to remove a huge
brain stem malformation that has bled, wiped out most of one side
of the medulla and part of the pons, destroying the nuclei of
cranial nerves 9, 10, 11 and 12: she can't swallow and one vocal
cord is paralysed. In any case, she can't talk due to her trach. I
am able to communicate with her by a letter board and a complex
system of eye blinks and eventually lip reading. Some of the staff
want to learn how to communicate, some don't.
Bonnie is having panic attacks, feels that she can't breath. Some
doctors and nurses think that she is "spoiled." Whats her problem?
We saved her life." Some nurses can partially talk her down from
the attacks. Others not only can't but don't want to. They think I
am indulging her by breathing her down and reassuring her,
empathizing with her paralysed and powerless state. No one in the
ICU knows how to deal with panic attacks. The normative patient,
recovering from one kind of transplant or other or major life
saving surgery, is on heavy doses of morphine and benzodiazapines.
When they wake up and start getting demanding, they are shipped out
for someone else to deal with.
One nurse, equally comfortable with the technical side of the job,
wants to learn how to manage panic attacks. Several nurses state
explicitly that they do not want to care for Bonnie. "Its not
interesting," says one. She says that she would prefer to care for
the lung transplant patient in the next cubicle. Since there is
excellent one-to-one nursing and some nurses are comfortable and
look forward to caring for Bonnie/me and some not, why I wonder
should those who do not be forced to do it? I work with the charge
nurse to make a roster of nurses that want to do the job.
I suggest a pharmacological approach to the panic attacks. The
anaesthesia staff who run the ICU are uncomfortable and ask for a
psychiatry consult for Bonnie--or for me; I'll never know. The
psychiatrist allows that he has not been in an ICU since medical
school and asks me what I would do. I suggest that we use the same
benzodiazapine/antidepressant combination that I would use in an
office setting. We discuss the approach with the ICU folks and a
plan is organized. It helps. The nurses who want to care for Bonnie
ask me to give then a session on panic attacks. We organize it with
the charge nurse. Care dramatically improves and the nurses take
pride in their accomplishment.
Case #2: I have had multiple, some questionable, back surgeries--
sustaining complications from each procedure. I am again a patient
at the hospital where I have been head of family medicine for 17
years. After living and working in a body cast for six months and
being told that a fusion is the only way to eliminate chronic pain,
and having scepticism about further surgery, I arrange to have the
cast cut off and locate a willing acupuncturist to work with me to
control the pain enough for me to begin exercises to restore my
profoundly wasted abdominal, pelvic and back muscles. The program
works. I am off meds and functioning well at home and work. Many of
my treating and medical collogues think I am a bit strange to be
frequenting charlatans. This time, perhaps related to the
demineralizing consequences of my surgeries, I am recovering from
cystoscopy and removal of a tiny stone which was snared from within
the bladder wall. Returned from the recovery room to the ward, I
awaken in agony, feel my abdomen and palpate a bladder up to my
umbilicus. I call the nurse, ask her to catheterize me or get
someone who will. She says: "Just be a patient. You have had a
simple cystoscopy and there is no reason to be in urinary
retention." I ask her to call the urologist. She refuses. I call
the physician's answering service on my bedside phone. He is
unavailable. In severe pain, I call the nurse again. She tells me
not to be a pest and again refuses to examen me. I get up, with
difficulty make my way to the utility room and find a catheter and
catheterize myself for 1000cc of bloody urine containing many
clots. Jonny shirt and all, I stumble down the hall to the nursing
station, place the container of bloody urine on the nurses desk. It
wasn't good behaviour but I feel better on many fronts.
Case #3: My father, Philip at almost 84 years of age, has had a
rocky recovery from multiple coronary bypass surgery. In and out of
congestive right heart failure secondary to tricuspid regurgitation
and increased pulmonary vascular resistance, he is discharged home
to our apartment on furosemide, digitalis and an ACE inhibitor.
After a week he is well enough to return to his own home on the
Sunshine Coast. I go to see him on the weekend and find him again
in heart failure and arrange an urgent visit with his family
doctor. I express some diagnostic and therapeutic concerns and am
told to be the son and let the GP be the doctor. The family doctor
has no way of knowing how thrown I am to be hearing this from a
respected colleague. I keep quiet. Some alterations in the regime
are made.
Later that week, I am so concerned about how my dad sounds over the
phone that I cancel the office and grab the ferry, find him worse
than ever, as does the family doctor, and we agree that he needs
hospitalization in Vancouver, which the family doctor arranges.
With my parents, we catch the last ferry to Vancouver. The family
doctor and I continue to work on our relationship.
After a few days in hospital, my father is discharged directly home
to our apartment in Vancouver a scant few hours off a dopamine and
furosemide drip. Bed crunch I am told. The medications are
unchanged and I express concern to the covering cardiologist as to
what would make us think that failure will not recur. I am told
that ventricular function was excellent on the echo study (in
retrospect on dopamine).
Three days at home, with me trying to balance low cardiac output
confirmed by low blood pressure with peripheral edema and an
obvious developing pleural effusion on the right, I am getting very
anxious. Fearing the use of a powerful loop diuretic in the face of
a blood pressure of 70/undetectable, I hold the diuretic and return
home a few hours later to find my dad in peripheral shut down with
nail bed cyanosis and almost no air entry on the right and with
obvious dullness to percussion from the apex downwards. Remember
that I am not supposed to notice these things, let alone examen my
father and juggle medications.
I bring my father to the emergency room, where I meet a junior
resident who listens to my history, asks appropriate clarifying
questions and then does his own complete and accurate exam. He
reports to the head of the emergency room who acts with both
medical and human effectiveness, acknowledging my distress and
understands fully how difficult it was to have to play the role
that has been thrust upon me. The medical resident on the coronary
care service, on the other hand, states that if I had not omitted
the loop diuretic my father might not now be in the emergency room.
It feels very familiar. As a GP, I have often been in the position
of sending in a patient to a tertiary care centre for assessment or
treatment, to have an arrogant resident who neither knows the
patient nor the circumstances, pontificate about what the proper
treatment should have been or who questions the need for the
referral. In my role as Director of Outreach for a tertiary care
centre, the persistent complaint from GPs and community based
specialists alike turns around the behaviour that I have just
experienced. I feel closer to the people I am supposed to be
serving. Plus ca change.
During rounds in the coronary care unit several days later that
same resident, clearly uncomfortable with my presence at rounds
when my dad is being discussed, and wondering out loud if she
should say in my presence what she is about to say, inquires of the
attending if we have not reached the end of our therapeutic
approaches in an 83 year old man with obviously compromised
ventricular function. Its not so obvious to me, and its certainly
not clear to my dad's cardiologist, that we have reached the end of
the line or that we even know what is going on.
The coverage system changes at the beginning of a new week. My
father is now under the care of a second ICU cardiac care team. The
attending finds my questions a bit irritating and makes it clear
that he is busy, that I am taking up too much of his time. Of
course, he is busy, but in the four days on the unit I may have
taken up perhaps 5 to 10 minutes of his time and none of the
residents time. The nursing care is superb, technically and
personally. The nursing staff genuinely care about my dad, my
mother and me.
Improving, my dad is moved to the adjacent step down unit. The care
is good but the nurses harried. They do their best. Communication
with the medical cardiac care attendings and residents is nil. My
dad's cardiologist is providing both coherent care and looking
after me in the bargain. His ideas are not in synch with the
coronary care team, who are therefore pleased to have my father
moved to a medical ward where care can be managed by his own
cardiologist. To protect myself from assuming the role of physician
for my father, I have arranged for a family practice colleague to
be my father's GP in Vancouver, standing in for his GP on the
Sunshine Coast.
Transfer is accomplished. The idea was good but the actual transfer
occurs late in the day--bad timing. When I arrived at about 9:00
PM, I found my dad had been transferred to the back of a large
medical ward at the most remote location from the nursing station.
The nurses are understaffed for the many ill patients on the ward.
Several patients are confused and had balance problems and in the
first hour several had near falls. My dad is disoriented and
delusional, his nail beds were blue on oxygen and respirations
laboured. Blood pressure is low. The nurse, meeting him for the
first time had no way of easily knowing how he was or was expected
to be. When I express concern, she informs me that his oxygen
saturations were satisfactory.
On brief and superficial exam, I found that he had no pedal edema
and minimal sacral edema, his right lung field was dull and he was
coughing and slightly bronchospastic. I did not have a stethoscope,
just as well as this would likely have been pushing the limits of
the son role--the stethoscope being the symbol of physician power
and control. The cough and obvious bronchospasm was a new finding,
as his previous failure picture had not included wheezing or cough.
I communicated my concern to the nurses who appropriately responded
by calling the medical resident on call.
The resident was at first cordial, explaining that my father was
really a cardiology patient but she would be pleased to cover. I
told her of my observations and findings. It was clear that she was
uncomfortable with my medical role and tried in not very subtle
ways to assert her a dominance. I wondered if we were caring for
my father or engaging in power politics. After brief exam, she
stated that his failure was worse. This was incorrect. While
waiting to contact my dad's cardiologist she ordered a small dose
of IV furosemide, despite the fact that there were no clear signs
of failure. The situation was more complex than that. I tried to
tell her of the difficulties of balancing his low cardiac output
with over treatment with diuretics. She wasn't interested. In
fact, the team on the cardiac unit had acknowledged that they had
over diuresed him and no furosemide had been used for several days
because of low cardiac output. His present problem continued
principally to be low output despite the obvious pleural effusion.
But how could I know that, I am only the son.
While waiting for the cardiologist to return the call, the resident
informed me that the obvious reason for my father's right heart
failure was a right sided infarct. While this might be true there
was no evidence for it and my dad had been regularly monitored for
such events during a long hospitalization. She concluded as well,
without an x-ray, that he likely had pneumonia. In fairness,
pneumonia certainly was a possibility, and I was concerned about it
as well. But the x-ray was ordered for the morning.
Since it was late and the resident was very busy, I offered to
encapsulate the history to save her time and proposed to show her
some relevant information in the chart, information that had been
shared with me by my dad's cardiologist and his GP. The resident
became irate, stating flatly that it was inappropriate for me to
look in the chart, that I was inappropriately involved in my
father's care. She kept talking about how old my dad was, implying
directly and indirectly that I was being unrealistic in my
expectations. I had not expressed any expectations. I knew how sick
my dad was, that he might die any time. But I wanted high quality,
appropriate care for the present crisis, many aspects of which were
new.
To counter ageist thinking and to give the resident the flavour of
the person who my dad was and how well he was just a short time
ago, I explained that less than a year ago, at the age of 82 he had
packed up the house that he and I had built over 10 years of
summers and weekends and drove 3000 miles with my mother to their
new home on the Sunshine Coast. Response: "If it were up to me I
would take away the drivers licences of all those old people. They
have no peripheral vision and their reflexes are bad. I am afraid
whenever I see one of them on the road."
At this point, my father's cardiologist made contact. I overheard
the resident state that she was not sure that she could trust my
judgement or information. The cardiologist likely explained the
complexity of balancing low output right heart failure in the
absence of sufficient ionotropy with the need to use diuretics. The
cardiologist, as I had expected he would, given the recurrent
pattern, ordered low dose dopamine to be used and had to contend
with the nursing implications of that order in an understaffed
ward. After the phone call was ended, the resident again stated to
me that she thought that my dad had pneumonia, that the
cardiologist was wrong in his management, that he needed a tap of
his pleural effusion NOW and she would have been pleased to do it
if asked. She may have been right but that was not the point. If
correct, she would have been correct on the basis of inadequate
information and failure to appreciate the whole picture, including
the fact that with high central venous pressures, the effusion
would likely recur. And the process was all wrong.
Meanwhile, the nurses try to gain control of the total ward
situation and appropriately worried about my dad's location and
confusion, concerned about his falling out of bed, asked me how I
would feel about their placing him in restraints. What could I say?
I did not doubt their situation and the reality of my father's
disorientation. I told them to proceed and helped them set it up.
Exhausted and demoralized, I went home about 11:30 PM, hoping that
the many issues would be solved, and fell apart.
By the following day, the dopamine drip had stabilized the
situation. My father was no longer in peripheral shut down. BP was
up and confusion was gone, though he was and is still a very sick
man. Sometime in the night/morning the nurses had moved him up to
a room adjacent to the nursing station. He had an alert and helpful
roommate. And the day nurses had the situation well in hand. That
pattern held throughout the next night, and the nurse manager and
attending ward physician took me aside to learn about the previous
events and plan steps to assure continued high quality care. The
following day, on a Friday evening, nursing coverage and patient
instability the problem, my father is returned to the cardiac ICU
where nursing, resident and attending staff struggle to understand
the hemodynamics of a situation that should be improving but is
not. The attending cardiologist covering for the weekend
acknowledges his inability to sort out the problem, discusses his
difficulties openly with me and the resident and arrives at a plan
to obtain the needed information to form the basis of therapeutic
interventions. The same resident that previously criticised me for
omitting a diuretic dose in the face of low blood pressure, also
discusses concerns, frustrations--exposing a human dimension.
Perhaps the resident was less tired and harassed, perhaps it was a
behavioral cue from the attending cardiologist. Positive (or
negative) role modelling is a central principle governing medical
education.
My father improves slowly but its difficult for any of us to
understand the balance between the cardiac and pulmonary aspects of
his disease. The cardiac attending involves me in the decision-
making process, organizes a pulmonary consult. 1700cc of pleural
effusion is tapped with improvement in symptoms. Behind the
effusion is a likely pneumonia/atelectasis and my dad is treated
with antibiotics, bronchodilators and chest physiotherapy, with
good results. Adequately treated for the high right sided
pressures, the effusion does not return. In fact, when the new
cardiac attending arrives to take over for the weekend, he also
discusses his confusion with me, his belief that the main problem
is pulmonary. All cardiac meds are stopped while vigorous pulmonary
treatments are carried out--with good results. In a couple of days,
he is no longer an interesting patient, no longer has need of ICU
care and discussions begin about sending him to a ward.
The attending cardiologist is responsive to my concerns about ward
nursing and medical support and also to my suggestion that rapid
transfer to his own GP on the Sunshine Coast might be the best
plan. In that setting, the GP and other medical coverage staff know
him well, and now that the emergency and the high tech needs are
resolved, the entire situation seems more manageable at a small
community hospital than in a huge more impersonal tertiary care
centre. The transfer is effected and improvement continues, though
its going to be a long haul.
Common themes: During many months of hospitalization, Bonnie's care
was less than optimal on uncountable occasions. In her care and my
own I uncovered problems many times. The medical and nursing staff
varied in their response to these discoveries. About half the time
they were pleased and grateful and responded with corrective
measures. For the balance, they were angry and suggested that I was
over involved and meddlesome. On rare occasions they punished me
and even Bonnie in a passive and even more rarely active way--by
denying privileges, creating obstacles, making new rules. What I
found most fascinating is that the staff who could deal with me,
were the best at their jobs, at both the technical/diagnostic level
and at the human level as well.
In looking at Bonnie's and my own care and recently the care
received by my dad, I discovered many wonderful nurses and doctors,
truly caring and competent people. I encountered others who were at
worst a real danger to the patients under their care, at best a
poor reflection on their profession. But this story is about being
a close family member who is also a physician. Who ever said you
are supposed to check your training and experience at the door when
you or a close family member are sick? Where does this idea come
from? If some attending physicians model dismissive behaviour, no
surprise if some residents pick it up.
The experience that I have had only seems particularly strange--
because I am a doctor. What about family members who are not
physicians? Does it mean that their ideas are less valid, that they
have less right to contest a dysfunctional system? I don't know if,
as a physician, I had more or less difficulty in obtaining optimal
care than a lay person might have. Probably, in some dimensions,
more, in others, less. Considering my experiences, it is daunting
to consider how non-physician family members could have dealt with
the situations described.
The irony is that anyone who has worked in an institution knows
that mistakes are inevitable and happen frequently. People and
machines are fallible and in the end we need all the help we can
get. Family members, professional or not, need to be integrated
into the care. Their ideas must not be trivialized, their concerns
demeaned. How do we teach compassion? How do we weed out those
professionals that are destined to deal with patients and family in
a demeaning and authoritarian fashion? In the face of the
increasing technological imperatives and diminishing resources, how
can we encourage and reward positive role models who teach
compassion and caring?
Family members need to be encouraged to be involved with the care
of their loved one. Professional or not, they need to be told that
they are generally not a problem. They, more than any professional
staff, will have the best interests of the patient in mind.
Professionals need to work with the situation as it is.
Information, from whatever source, needs to be weighed and placed
in context.
I am much more concerned about my family than the feelings of
professional staff. Yet I have a responsibility to express my
concerns in the most helpful way possible. The professionals have
a responsibility to take me and non-professional family members
seriously. How to be vigilant but not overbearing? When you figure
it out, let me know.
Michael Klein is a family doctor and pediatrician, Head of the
Departments of Family Practice at BC Women's and Children's
Hospitals and Director of Outreach at BC Children's in Vancouver.
He spent 20 years teaching and practising family medicine at
McGill. Bonnie Klein is an award winning film-maker and writer
about to publish a book on stroke and recovery (Knopf Canada,
1996). She functions autonomously and continues to improve eight
years after the stroke. Michael's father Philip Klein is a retired
film animator and sculptor.
