Daughter and doctor: two conflicting roles
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7352.1530 (Published 22 June 2002) Cite this as: BMJ 2002;324:1530
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Reading ‘Daughter and doctor: two conflicting roles’ evoked painful
and strong emotions in me, even though my father died four years ago from
prostate cancer. I found myself in an impossible situation where as both a
daughter and nurse I wanted to care for him, could have cared for him, but
my father wanted a daughter, not a nurse.
He had excellent care from his GP and district nurses to change his
catheter and give advice on pain relief. He wanted to preserve what little
dignity and independence he had left and I respected that. Yet even as I
write it sounds like an excuse. This resulted in my mother being his
primary carer, asking me for advice from a distance, out of his earshot. I
concentrated on doing household chores and taking dad to hospital for his
outpatient appointments. I found myself on the outside, feeling guilty and
frustrated as I watched my mother become more and more exhausted.
As his illness slowly progressed towards its terminal phase I chose
not to notice. Even on the day he died I had gone to work as normal in
A&E. Every day I would tell myself that when he really became ill I
would take my annual leave and help to look after him at home which was
what he wanted. I went a year without taking any annual leave and no one
at work noticed. I didn’t realise myself until it was pointed out to me
after his death.
When he did die, I sat by his bedside for five hours, finally having
a chance to care for him whilst no one else knew what to do. That was the
only point in his illness when my professional knowledge was finally of
use to me.
Being health care professionals does not prepare us for personal
tragedy, although for some reason we believe it will. We understand the
pathological processes in depth. We can estimate the course the illness
will take, know what treatments should be offered and even make an
educated guess at how long our loved one may have. In particular as a
nurse, having worked in ITU, on wards and in A&E I had considerable
experience in preparing relatives for both expected and sudden, unexpected
death. I knew the emotions I was going to experience, I had time to
prepare for his death. How unprepared I was.
I agree with David Bass: we must try to care for those we love and
reserve professional insights for those who consult us professionally. One
cannot mix professionalism with love during personal tragedy. To do so is
to deny the fact that this is not happening to another person you are
caring for but someone that is integral to your existence. It is happening
to you. As usual hindsight is of no help. I’m sure I will feel exactly the
same when my mother dies. It’s human nature for a health care
professional.
Competing interests: No competing interests
As a medical student, we all have rebellious tendencies. I had the
responsibility of caring for a sick relative. A relative that was cut of
in his prime, that the doctors had given up on, a person who was a
consultant surgeon who had been left and forgotten by the world.
I have witnessed that his colleagues( surgeons) and friends have
dismissed him and provided no help. As a child I watched as they all
stopped,looked, sniffed the morning air and left. In the meantime, we were
left isolated and to our own devices. On occasions I felt the world had
forgotten about us. A carers life was similar to that of a prison.
For many years, I watched and observed many doctors, our GP who never
even visited, the neurologists at "high places" - yes four of them who had
made the wrong diagnosis and later naver admitted to being wrong even
after I provided the evidence in science in front of them.
So for 10 years they wasted his life. Is that fair?
Sick doctors have very limited support and the BMA and GMC did very
little many years ago. Ofcourse the situation is changing for the moment
but 20 years ago, there was nothing.
The doctors know who they are, the institutions know who they are. I
have 10 full files of the work/ (letters to institutions and health
authorities) I did through medical school to find the answers to a problem
that noone wanted to solve . They said my relative would die at 60. He is
now 71 and still going extremely well, reads surgical books and uses
computers. The unexpected happens even if doctors give up on you.
The solution lay in the USA for cognitive rehabilitation. I found the
solution to ensure his quality of life was improved. I developed and
funded my own lifestyle rehabilitation programme which started 7 years
ago. The GP sniffed at me and told me it would " never work". The
neurologists laughed at me at high flying institutions. These were people
with lots of degrees and experience. I was a fourth year medical student
with an idea which was routinely applied in America but the UK simply did
not have the facilities.
An idea that finally obtained health authority funding after many
years. An idea that rendered the person well, independent, improvement of
memory by 72% and ressurected a man left forgotten by the medical
establishment.
My relative was taken ill in 1982 and it took us 14 years to obtain
the correct treatment to make him better.
Finally, the establishment can be uncaring but the final
responsibility to make a difference lies within the family. Ones own world
can change with a bit of effort and the answers are always there - they
just need to be found.
My relative's story is an embarrassment to the medical establishment.
It is also the lesson to empowering oneself, to never accept what you do
not believe is correct in the eyes of science and medicine no matter what
educated doctors do to discourage you :).
We can all shout " woe is me" but the most difficult thing is to
change your own world by yourself without depending on anyone - doctors
make mistakes - and this is evidence that they even make mistakes on their
own colleagues but empowerment teaches us many things. The system does not
have the answers because they rely on statistics to balance whether it is
financially worthwhile for a person to be treated. The individual matters
to the family and because of this the family needs to seek the answers and
solve their problem. The establishment cannot be relied upon and doctors
will never apologise.
If I had depended on our doctors, my relative would never have been
well. He never died at 60 and he continues to live to a ripe old age. A
surgeon cut in his prime, shut out from the world, a person who worked and
valued the NHS, provided it with the best years of his life was ultimately
shut away and forgotten by the very people he worked for. This is the man
who currently lives life to to full because we made the effort to
challenge the entire establishment and obtain the answers.
There is a life outside medicine - the way to achieve it is to follow
what you believe to be correct in the eyes of science. Doctors may fail
but science doesnt.
Dr Rita Pal
Competing interests: No competing interests
Devastation facing hope is like water running through your fingers,
what can you actually hold on to?
Realization dawns, numbed and helpless, locked in a system.
You could not have done more: just to exist and live through the
moments of pain and anguish, sharing his suffering with your suffering.
We are three doctor daughters of our doctor father who was labelled
wrongly with a diagnosis of dementia at aged 50 years, ignored by his GP
(a previous colleague) for many years, his employment as a surgeon severed
by the GMC,refused any form of rehabilitation from the NHS system as he
was labelled as a "hopeless case".
I watched his dignity shredded.
I was a third year medical student then, and though we tried for
specialists and care for the first few years.....the rest of the years
were of tears....spent watching an intelligent, capable man's life
diminish to nothingness.......feeling helpless....where was hope in the
blackness......we thought the end of hope......
Until new energy of my youngest sister, then a medical student
emerged 10 years later....who dared to challenge each authority with their
wrongness, made them listen to independent views, forced them to pay
attention, forced the Health Authority to fund the input to rehabilitation
by novel USA methods. And now my father aged 72 years is alive....his
intelligence is crisp (scoring 100% in all medical questions and 95% in
general knowledge), his memory is perfect, his love of knowledge and of
life flowing strongly to his veins....I cannot believe the man who was so
helpless and is now so hopeful....
And for us and especially my younger sister, 11 years my junior, I
consider her the Angel who saved our father, conquered the system: tough
and invincible and refusing to listen to authority voices that said
"nothing more can be done for your father"....she has been at the blunt
end of all the insults, hate and being labelled as a difficult medical
family... we have to continue to bear such things still for now our
father lives...
The helpless daughter doctor needed help from the hopeful daughter
doctor.....a challenge of his hopelessness and turned it into living
hope.....
Competing interests: No competing interests
The author will have struck a chord with many medical practitioners
who have nursed a loved one. For some, the chord will dissonate rather
than resonate, because our medical education does not prepare us for the
less orthodox roles we will inevitably have to assume at various stages of
our careers. Consequently, our emotions and intellect declare war on each
other when we have to treat colleagues or members of their families, or
when we ourselves are the colleague seeking medical attention, or -
perhaps the most complex of all situations - when we have to assume the
role in which the author found herself. Having professional insight into
the disease of a loved one being treated by others easily gives rise to
feelings of disempowerement, and frustration at being nothing more than a
minor character in a dramatic chapter of your own life. The situation may
be aggravated by two factors: Firstly, even when the family member's
affliction is outside the field of our chosen speciality, we make damn
sure to find out all that is known (and a lot of which isn't) about Mom
or Dad's illness, by doing Medline searches, consulting specialist
colleagues, and grappling with differential diagnoses long after bedtime.
On an intellectual level, we hope to empower ourselves in this manner, but
in fact, we may simply be holding back the tide of thoroughly human
emotions which manifest when a loved one is ill; Secondly, there is the
rest of the family, seeking you out for news, reassurance, and
interpretation of what the treating doctor said or meant. After all,
you're the expert in the family. Well, aren't you? Just having given
Uncle Bert and Cousin Jasmine a scholarly dissertation on monoclonal
antibodies and why your Dad should get them, it's really hard to remind
them - or yourself - that you're just another member of the family, and
that you are just as sad, afraid, concerned and confused as they are.
Never before has the pedestal felt taller, or flimsier.
As my credentials below will confirm, there is no reason why I should
be any wiser about this dilemma than the author was able to be in her
particular situation. But for forty-nine years, I have been one of three
medically qualified sons of a family practitioner (now 94 years young),
and for 21 years, the husband of a doctor born into a medical family.
When we started our own family, my wife and I anticipated that our
childrens'health-care risked being a hybrid of all the well-meant but
subjective practices we had witnessed during our early lives. We selected
a family practice which we trusted, and we use it. When a family member is
in hospital, we visit, we express our concern, and we approach our
colleagues for information, but we do not compete with them. We express
care for those we love, and reserve professional insights for those who
consult us professionally. It's not always easy, and it requires a
conscious separation of roles, but it works.
Unlike the author, I sincerely believe that the medical profession,
as a whole, does care. In fact, when family members are at the business
end of a stethoscope, it can care too much. The enduring challenge is to
love, without necessarily assuming the total burden of responsibility.
Competing interests: No competing interests
Misplaced Allegiance
The author of this sad Personal View has remained
anonymous reflecting her misplaced allegiance to
the medical system available in the UK. Her father deserved better and the
daughter obviously realises this. The GP who refused to prescribe the
medication suggested by the neurologist should have a complaint made
against him for negligence. I strongly believe that the our duties are
towards our patients. In this case the duty of the daughter was to her
father and not to the niceties and misplaced relationship between her and
her fathers' GP.
It is tragic to think that the father might have had a reversible cause of
his dementia that was not found due to 'doctors who have stopped caring
about their patients'.
Competing interests: No competing interests