MesotheliomaBMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b2862 (Published 14 August 2009) Cite this as: BMJ 2009;339:b2862
All rapid responses
There must be so many doctors and their families who have endured
something at least similar to Kieran Sweeney. All their stories will be
different, some more hopeful, some less so. Kieran's words made me weep
and reminded me of where we were as a family exactly 5 years ago.
Fortunately, our story has a happier ending, at least for now. The most
disappointing part of our journey was the unwillingness of some colleagues
- in both primary and secondary care - to take my husband's symptoms
seriously, resulting in a 6 month delay in the diagnosis of what proved to
be a very malignant tumour at the base of the tongue.
From the time a diagnosis was finally made, however, the personal
care we had from colleagues was outstanding and we have many positive
memories. The doctor who ordered the scan called my husband at home,
asking him to go to his office where we talked through the likely
diagnosis (while I was trying to ring our solicitor to see if we could
cancel the purchase of our new house!). The next day, the oral surgeon
insisted on a home visit to talk through the prospects and ways in which
our family holiday could be arranged around a biopsy without inducing
unnecessary anxiety for our son at a time when the precise diagnosis was
still uncertain. We remember the consultation when the histological
diagnosis was divulged and the oncologist, who had been a year or so ahead
of me at medical school, said afterwards that she could not help wondering
how she would have felt if it was her receiving the news that surgery,
although likely to be the most effective option, might mean that her
husband would never speak or swallow again. The surgeon and my husband’s
boss in the medical school supported me physically and emotionally, one on
each side, as they took me into the ITU after the operation.
I could mention many other instances of genuine care and kindness –
the insight into what life might be like in the future from the ENT
nurses, their patience in teaching me about caring for the tracheostomy,
the surgeon warning us that the radiotherapy would be very debilitating
and that recovery would be slow. Throughout they were professional but
also personal and caring. I think I know that for some, caring for the
husband of a senior colleague was difficult – but they never let it hinder
the care they gave us as a family.
Five years on, life continues – but it will never be quite the same.
Each follow up appointment makes me anxious but our NHS colleagues are
still there for us treating my husband with care and compassion for what
has been a life changing illness. Perhaps we were the lucky ones - no one
shrank away from telling us the truth and helping us make those difficult
decisions. I’d like to think that there are more families with a tale to
tell like ours rather than the harrowing one we read from Kieran.
Competing interests: No competing interests
Two general practitioner academics who spent their professional lives
researching the patient experience are facing terminal illness (1;2).
Kieran Sweeney’s comment “the more junior ranks of ancillary health
professionals are simply unable to conceal the pleasure of the deployment
of their authority” deserves to be systematically researched.
Managing serious illness requires collaboration between multiple
professionals and – importantly – non-professionals (3). Accumulation of
seemingly small things –an ill-chosen phrase; lack of eye contact; a
gaping hospital gown; and miscommunication about the diagnosis – came
together to erode Sweeney’s sense of dignity and his trust in the wider
system of care. In the same BMJ issue, May et al call for more tailoring
of the care package to fit individual needs in complex clinical cases (4).
In developing a research agenda into the small things that matter, we
should revisit the work of Harold Garfinkel (5). Much research on
organisational work focuses on standard operating procedures (e.g. “are
the guidelines being followed?”). Garfinkel, in contrast, argued that work
is irreducibly situated and contingent; medical work is characterised by a
high degree of exceptionality; and the key research question is how, on a
moment to moment basis, staff attend (or not) to subtle cues from the
patient, other staff and the medical record, and adapt their actions and
My team showed that low-status general practice staff such as
receptionists have enormous power to shape organisational routines in the
provision of interpreters for limited English speakers (6). The
difference between a good (and probably safe) and a disastrous (and
potentially unsafe) patient experience was linked to such things as
identity, mindfulness and autonomy in the most junior members of the
organisation. The agenda raised by our dying colleagues demands more
theory-driven research studies into how front-line administrative and
ancillary work can support – or undermine – the high ideals of patient-
(1) Sweeney K, Toy L, Cornwell J. Mesothelioma. BMJ 2009;
(2) McPherson A. An extremely interesting time to die. BMJ 2009;
(3) Greenhalgh T. Role of routines in collaborative work in
healthcare organisations. BMJ 2008; 337:a2448.
(4) May C, Montori VM, Mair FS. We need minimally disruptive
medicine. BMJ 2009; 339(aug11_2):b2803.
(5) Garfinkel H. Studies in ethnomethodology. Engelwood Cliffs, NJ:
(6) Greenhalgh T, Voisey C, Robb N. Interpreted consultations as
'business as usual'? A study of organisational routines in primary care.
Sociology of Health and Illness 2007; 29(6):931-954.
Competing interests: No competing interests