Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care

Chochinov’s framework for dignity conserving care provides a clear
and concise method for maintaining one’s own sensitive approach to
patients within ‘the time pressured culture of modern health care’.
However, whilst he explores the complex context of the personal clinician
- patient relationship and communication, he assumes that such a
longitudinal relationship exists. Unfortunately, such personal continuity
of care can no longer be assumed: a casualty of both the current model of
care delivered by a multidisciplinary team, made inevitable by
increasingly complex interventions and a health care system in which
continuity is fractured by efficiency engineering. Junior doctors in UK
hospitals rarely follow a patient through from admission to discharge;
consequently patients are ‘cared for’ by numerous anonymous individuals
who are often constrained by the need to administer their ‘evidence based’
checklists. Continuity seems to have been reduced to merely ensuring
health care information is passed on from one clinician to the next and
even that information is often reduced to boxes ticked on a form.

These systemic constraints make Chochinov’s framework all the more
important. As clinicians we need to redouble our efforts to provide
‘humane’ care within an increasingly dehumanising system. We need to
appreciate the effect that lack of personal continuity has on vulnerable
patients and try to partially mitigate against this by condensing the
fundamental tenets of dignity conserving care into the few pressurised
minutes we spend with patients; listening to what they say, rather than
hearing only what we can score on our charts.

Patients however still both require and value personal continuity
from clinicians. Whilst respect for the patient and their dignity should
characterise all clinical encounters, in only a few trusting, continuing
and supportive clinician-patient relationships will it be appropriate for
patients to share their deeper selves (the type of relationship which
seems to be assumed in Chochinov’s paper).

We need to urgently find ways of rehumanizing the system in which we
work. Whilst one trusted doctor delivering care alone to an individual
patient belongs to a bygone era and cannot work in the majority of modern
health care contexts, personal continuity must be protected and fostered.
The ‘key worker’ providing dignity conserving care may be one model for
providing such continuity. This concept should be developed with
particular attention to how the key worker is selected - ideally it should
be the patient who selects - and how she relates to the wider team.
Multidisciplinary teams need to explore exactly what this model of working
means within their specific domains, taking care to listen to what
patients tell them about it. Furthermore the patient’s dignity must be
respected within the team setting. Only in this type of Environment can
the ABCD of dignity conserving care be fostered.

Competing interests:
None declared

I very much welcome Harvey Chochinov’s article and the accompanying
editorial on the A,B,C and D of preserving patients’ dignity in the 28
July issue of BMJ. I support the view that attitude, behaviour, compassion
and dialogue should be considered as important issues in the training and
continuing professional development of the medical profession.

Ensuring people are treated with respect for their dignity is an
issue for the professional development of all health and care staff, not
just doctors.

It is within this wider context that I am personally leading, with
the support of the National Director for Older People Professor Ian Philp,
a piece of work from within Government to ensure older people and other
groups in vulnerable situations are treated with respect for their dignity
in all areas of care.

We have already seen some significant successes, including a high
profile Dignity in Care Campaign, establishment of a growing network of
Dignity Champions, widespread support and involvement from key
professional and advocacy organisations, strengthened regulation and
inspection from the Health Care Commission, capital investment to improve
the care environment and work on improving nutritional care.

I look forward to continuing to work with the medical profession in
this important area and invite anyone who would like to know about our
work or to sign up to be a Dignity Champion to visit
www.dignityincare.org.uk

Competing interests:
None declared

Chochinov(1) is to be applauded for spelling out what should be
common sense, but is often missing from patient care. The essence of his
message can be summarised by the ethic of reciprocity, as a fundamental
moral principle. This aspect of patient-focussed care is essential to the
care of patients as individuals in all settings and we hope Chochinov’s
framework can raise awareness of this.

During our medical careers we have repeatedly seen patients' meals
interrupted for the convenience of the doctor, and occasionally, patients
reviewed while sitting on the commode because the ward round could not
wait for them to be helped back to bed. The fact that curtains do not
provide sound proof privacy can be frequently forgotten.

As palliative medicine trainees, the issue of respecting our
patients' choices often focuses on the preferred place of terminal care
and death. While some patients will choose to die in hospital, a
significant proportion of those who want to die at home do not manage to
do so(2). While there will be practical barriers for some of these
patients, the first barrier for professionals to overcome is the simple
question, "Where would you like to be cared for when you are dying?"
Perhaps respecting this choice restores for some individuals, the greatest
dignity of all.

1 Chochinov HM. Dignity and the essence of medicine: the A, B, C, and
D of dignity conserving care. BMJ 2007; 335: 184-187.

2 Daley A, Sinclair K. Recording and auditing preferred place of
death. Palliat Med 2006; 20(6): 637-638.

Competing interests:
None declared

Cultivating compassion: seeing Patient Voices

What a delight to read Professor Chochinov’s refreshing article about
the essence of medicine. We applaud the ABCD of care and rejoice in the
encouragement to see patients as human beings and not simply as their
conditions.

We have long known that compassion and respect lie at the heart of
what most patients would regard as care rather than treatment – and this
pertains to all patients, not only those nearing the end of life. We have
also long suspected that stories are the best way to learn about what it
means to be human. Our late colleague, Ian Kramer, a passionate advocate
for more humane care for patients, noted that, for those experiencing
illness, there are two types of journey; and the patient journey is only
one part of the larger journey of life.

For the past four years, my colleagues and I have been gathering the
stories of patients, their carers and healthcare staff and presenting them
as short (two – three-minute) ‘digital stories’ via the Patient Voices
Programme. Although some of these stories are celebrations of the ‘value-
based, scientifically informed artistry that characterises expert and
clinically-governed care’ (Stanton, 2004), more often, we hear accounts of
thoughtless treatment and careless care; pleas not listened to, common
courtesy forgotten, mistakes not acknowledged, concerns disregarded.

We recognise that herein lies a fundamental paradox: a malign
alchemy. The overwhelming majority of those who work in health care are
neither unprincipled, unmotivated, nor uncaring. Most people are drawn to
medicine, nursing and other professional roles because of a desire to
alleviate suffering and offer comfort.

Nevertheless, in the turbulent 'here and now' of care delivery, under
pressure of time, within environments that are coldly functional,
operating from within the 'safety' of a powerful expert role and
performing habitual and ritualised tasks that depersonalise the
transaction of caring, the precious motivation of the professional is
transmuted to a base and debasing inert compound.

All too often, inhumanity is experienced by patients as a 'system
property'. We share Gandhi’s belief that ‘the culture of the mind should
be subservient to the culture of the heart’. In order to bring about
transformation in our own practice and in the behaviour of the system,
each of us must be able to reconnect to our own humanity and that of
others and thus ‘be the change we want to see’.

The stories that we have collected can be powerful prompts to
reflection and to (re)learning profound truths that the pressure of the
everyday can all too easily obscure. Working with our storytellers to edit
and refine their stories, select appropriate images and music to
complement the story, by a process akin to distillation, we reach the very
essence or heart of the story, that which reveals what is most important
for each patient/person.

Precisely because they can be viewed away from the turbulence and
immediate pressure of the here and now, the stories are moving and
memorable in a way that can seem disproportionate to their brevity and
apparent simplicity. Unlike so much policy, guidance and instruction, they
are not prosaic, but have the resonant impact of a poem – what Wordsworth
recognised as ‘emotion recollected in tranquillity’.

In our experience, this can be true not only for those professional
and other staff who work in the frontline of care, but also for those
whose task it is to govern or manage a system that will only be
sustainably humane if and when all of those within it are committed to the
principles set out so eloquently by Professor Chochinov.

Equally, in our experience, the creation of these stories is often an
important step in the healing process of the storytellers. And we,
listening attentively to every story, to what really matters to each and
every individual who is courageous enough to tell an important personal
story, are reminded of the greater story of our universal human
experience.

Over recent months, colleagues who share some of the concerns and
aspirations set out above have been wrestling with the task of humanising
healthcare. The Patient Voices stories have been both an inspiration and a
resource. Like flashes of light from a lighthouse, the stories serve as
‘markers and guides, comfort and warning’ (Winterson, 2005) and are made
freely available to all who can benefit from them. Each story offers us an
opportunity to walk in another’s shoes for just two or three minutes. Each
story is a plea to remember, in the words of one storyteller, ‘our own,
quite common, humanity’. Indeed, the Department of Health (DH, 2007)
reminds us that ‘The more our human rights are respected, protected and
fulfilled, the more of our humanity or ‘what makes us human’ is
fulfilled.’

Aware of the suffering of our patients, our families, our friends,
ourselves, how can we do anything other than cultivate compassion, listen
with attention, respect and do everything in our power to conserve the
dignity of those who need care?

If we are serious about putting patients at the heart of care, as the
UK Department of Health (DH, 2000) says we should be, if we truly want to
work in partnership with patients to co-produce care, if we want to care
about patients as much as for them, then taking the time to listen to
their stories is of paramount importance. It only takes a few minutes to
begin a process of profound and potentially far-reaching change – as long
as it takes to listen, really listen, to one patient telling a story.

www.patientvoices.org.uk

Pip Hardy and Paul Stanton

pip@pilgrimprojects.co.uk

References

Department of Health (2000) The NHS Plan: A plan for investment, a
plan for reform, Norwich: The Stationery Office

Department of Health, 2007 Human Rights in Healthcare – a framework
for local action, Norwich: The Stationery Office

Stanton, P. (2004) The Strategic Leadership of Clinical Governance in
PCTs, National Clinical Governance

Winterson, J. (2005) Lighthousekeeping, London: HarperPerennial

Wordsworth, W. (1798) ‘Preface to the Lyrical Ballads’, in
Hutchinson, T. and de Selincourt, E. (eds), (1975) Wordsworth Poetical
Works, Oxford: OUP

Competing interests:
I am a director of Pilgrim Projects and founder of the Patient Voices programme. Reimbursement for gathering and editing the stories allows us to make the stories freely available via the Patient Voices website www.patientvoices.org.uk