design

due sep .16

Doctors’ understanding of palliative care
Barbara Hanratty Division of Public Health, University of Liverpool, Liverpool, Derek Hibbert Division
of Primary Care, University of Liverpool, Liverpool, Frances Mair Department of General Practice and Primary
Care, University of Glasgow, Glasgow, Carl May Centre for Health Services Research, University of Newcastle
upon Tyne, Newcastle upon Tyne, Chris Ward Cardiologist, Dundee (formerly of Wythenshawe Hospital,
Manchester), Ged Corcoran University Hospital Aintree, Liverpool, Simon Capewell Division of Public Health,
University of Liverpool, Liverpool and Andrea Litva Division of Primary Care, University of Liverpool, Liverpool

Palliative care has been challenged to share its message with a wider audience, and for

many years it has been articulating an approach that is suitable for all patients. However, it

is not clear how widely this message has been accepted. As part of a study into end-of-life

care for heart failure, we conducted seven focus groups with doctors in general practice,

palliative medicine, cardiology, geriatrics and general medicine. In these, we explored

doctors’ understanding of palliative care. Participants displayed a reasonable grasp of

the wider concept of palliative care, but the specialists’ role was ill-defined, reflected

in scepticism about their place outside of cancer. Perceptions of palliative care fell into

three broad areas: it was more than a service, about managing dying, and the concern of

nurses, rather than doctors. Palliative care was welcomed as providing permission to fail,

whilst representing a dilemma between quantity and quality of life for the interviewees. Our

work suggests that specialist palliative care has been partially successful in getting their

message across, and poor understanding or receptivity are not major barriers to

implementing palliative care. Educational or other interventions to implement change in

palliative care need to acknowledge the complex interaction of factors influencing

physicians’ behaviour.

Palliative Medicine 2006; 20: 493 �497

Key words: knowledge attitudes practice; palliative care; qualitative research

Introduction

Palliative care has been challenged to share its message

with a wider audience,
1

and through education

and

example, its proponents have been working to improve

care for the majority for nearly 40 years. However,

despite the rapid growth of specialist palliative services

and ideas, it is still widely held that care of the dying is

poor, particularly in hospitals.
2 � 4

The approach espoused

by the hospice movement is potentially relevant to every

area of medicine,
5

and the key to improving health

care of the dying must lie in mainstream services.

Specialist palliative care services see only a small

minority of dying patients, most of whom have cancer.
6

In other diagnostic groups, such as respiratory and

cardiac disease, patients’ needs for care and support

often go unmet.
7,8

As the debate over widening the

responsibilities of the specialist services continues, it is

timely to stop and consider what doctors, in general,

understand by palliative care.

Previous investigations into doctors’ perceptions of

palliative care have often focussed on exploring choice of

topics for educational interventions or testing knowl-

edge.
9,10

We know much less about how palliative care is

interpreted or conceptualized.
11

This is important, as

acquiring knowledge is only one step towards changing

practice. The influence of different factors on the

complex path between education and behavioural change

is increasingly recognized as important.
12,13

Awareness of

doctors’ beliefs, for example, is thought to be crucial.
14

The hospital is a particularly important setting. Al-

most half of the UK population die in hospital,
15

and

popular belief holds that hospital practitioners may be

more reluctant than their community colleagues to adopt

holistic approaches to care.

We conducted a series of seven focus groups with

doctors, exploring views on the care of people dying with

heart failure. Heart failure is typical of chronic progres-

sive diseases in that a range of specialities may be

involved in patient management. Thus, our participants

from general practice, palliative medicine, geriatrics,

cardiology and general medicine form a cross-section of

hospital and community doctors involved in chronic care.

In this paper, we aim to provide essential baseline

information for the future development of services and

a palliative care approach, by reporting on doctors’

Address for correspondence: Barbara Hanratty, MRC Special
Training Fellow, Division of Public Health, University of
Liverpool, Whelan Building, Brownlow Hill, Liverpool, L69
3GB, UK.
E-mail: b.hanratty@liverpool.ac.uk

Palliative Medicine 2006; 20: 493 �497

# 2006 Edward Arnold (Publishers) Ltd 10.1191/0269216306pm1162oa

understanding of palliative care, as expressed during the

focus group discussions.

Methods

We conducted seven focus groups with doctors expected

to have a role in the care of patients with heart failure.

The participants were drawn from one NHS region in
England, and recruited via professional bodies or direct

approaches. The groups ranged in size from four to six

doctors (five general practitioners (GPs), five academic

GPs, five district general cardiologists, five tertiary centre

cardiologists, six geriatricians, six palliative care physi-

cians, four general physicians). Each group consisted of

doctors working at consultant level in the same speciality

to maximize openness and facilitate relaxed discussion.
Apart from the general physicians, half of whom were

women, there was only one female doctor in each of the

group of GPs, cardiologists and geriatricians, and one

male doctor in the palliative care group. Data to address

doctors’ understanding of palliative care were derived

from the opening question (Can you tell me what you

understand by palliative care?) and all other direct or

implied references to palliative care during the discus-
sion. The main focus of the discussion was on the

doctors’ perceptions of the need for palliative care for

patients with heart failure, and what form that does and

should take. The discussion thus encompassed both the

theoretical and practical aspects of palliative care, and

allowed the participants to elaborate their understanding

of palliative care throughout.

Two researchers were present at all the groups, one to
facilitate and one to observe. The meetings were recorded

and transcribed and QSR Nvivo software was used for

data management.
16

Data analysis used the principles of

constant comparison,
17

with two researchers coding and

categorizing all the transcripts. Themes were identified

independently, and discrepancies discussed. Preliminary

results were reviewed and discussed by the multi-

disciplinary group of authors. The focus of this analysis
was on the doctors who were not specialists in palliative

care, and data from the specialists’ discussion were used

to compare and contrast with the non-specialist view-

point.

Results

Discussion was lively in all the groups except the meeting

of general physicians. We cannot be certain of the reasons

for this. This group was the most difficult to arrange,

which raises questions as to the salience of the topic for

these doctors. Hierarchical relations within the group

may also have dampened the discussion, and holding the

meeting at lunchtime meant that the pressures of work

were not far away. The specific findings are presented in

terms of the main themes arising from the discussion.
This is not meant to imply that all the doctors shared one

view. Development and refining of ideas was apparent

throughout the interviews.

Much more than a service

It was clear from the way that participants referred to

palliative care that it was conceived as much more than a
service. Terms, such as ‘mode’, ‘concept’ and ‘situation’,

were used when discussing palliative care. Some framed

their talk in aspirational terms, referring to their ideal as

‘proper palliative care’, or ‘a thorough palliative care

approach’. The appropriateness of palliative care was

not questioned, and even when the group did not

share definitions, they were united in their support of

palliative care as an ideal. There was also a strong sense
of the holistic aspects of palliative care throughout the

groups.

I think in a perfect world you see it as a holistic ideal,

encompassing the patient, their family and the pro-

blems the patient has, the problems the family has erm

and both of their expectations of the process that

they’re going through. That would be an ideal world.
(GP 1/3)

The importance of looking at the whole picture including

psychosocial issues was expressed in most groups. GPs

and cardiologists also discussed the spiritual aspects of

care, though there was no particular indication that they

felt it was relevant to their work. Communication with

patients and carers was also acknowledged as a major
aspect of palliative care.

I think. . . it’s a kind of cultural recognition of whats
death. And, like you were talking about, there didn’t

used to be palliative specialists, I think there were

often priests that would help. (GP 2/1)

Erm I think palliative care depends on patients and

their carers, certainly in cancer but also in heart

failure, understanding the condition, the terminal

nature of their condition, and what we’re trying to

do for them. (Cardiologist 4)

Palliative care was also portrayed as a phase in time,

when the goals of medical management change and death
is recognized. It was only through discussion in the

groups that the difficulties of recognizing the right time

to switch to palliative care surfaced as a major challenge.

A change of gear, a diagnosis of dying, switching from

erm officiously striving to keep someone alive er, to

where the main emphasis should be on comfort.

(Geriatrician 3)

494 B Hanratty et al.

Managing dying

The management of dying was an underlying theme in

much of the discussion. Participants drew a picture of

themselves as conductors of the services around their

patients, co-ordinating and facilitating. For some, this

encompassed the environment and the social context, as

well as the medical care. The geriatricians’ discussion

suggested that they felt that they should strive to manage
the death, whilst the cardiologists were honest in acknow-

ledging that they made this switch late in the illness.

I think what you’re trying to do with palliative care is

provide the sort of psychological, social support to

relatives and patients and to hopefully have a co-

ordinated approach so it doesn’t collapse at the

weekends, things like that. (GP 1/1)

It’s a co-existent approach, so you keep optimizing,

keep revising the treatment and balancing the combi-

nation. But then you are also aware of the other

factors that are coming in and you also then get a

picture in your mind that is a road to deterioration.

And yes we might stop hammering the ACE inhibitors
because they’re clearly not effective and we may be

bringing them something else for the symptoms, but

you’re still maintaining that approach. (Geriatrician 4)

It was only amongst the general physicians that some-

thing closer to the concept of ‘palliative care from

diagnosis’ was discussed. Guidance and pathways for

managing the final 48 hours of life were considered
valuable, but only a part of palliative care.

Not very medical

The role of the nurse was emphasized strongly by most

groups, and there was a parallel perception that palliative

care was not necessarily the province of the doctor. It was

‘not very medical’, and ‘largely nursing based care for

people who are terminal’. There seemed to be a complex

set of conflicting motives here. Firstly, it was apparent
that palliative care was perceived as being time consum-

ing, and time was openly prized by many of the doctors.

Secondly, palliative care was seen as straightforward

medical practice, and in the words of one of the

consultants in palliative medicine, was ‘not glamorous’.

If the status of doctors is enhanced by displays of

expertize and technical knowledge, palliative care offers

a burden with no return. Labelling palliative care as the
role of the nurse perhaps legitimizes the doctor’s choice

not to become involved. However, the concept of

palliative care as an ideal was pervasive in the groups,

and some participants were clearly ambivalent about the

role they played. The presentation of the nurse as having

the skills and the time to provide better care for the dying

may well have been a direct and pragmatic response to

the time constraints of their own jobs.

Quantity versus quality

Many of the treatments for heart failure address both

symptoms and survival, so the switch from rescue to
comfort may not be clear-cut. Some of our participants

appeared to confuse the introduction of palliative care

with a direct path to death and focus entirely on quality

of life. Palliative care was described by one geriatrician as

‘quite negatively focussed in terms of survival’. The idea

that different approaches may co-exist, with shades of

grey in patient management, had not been universally

adopted.

The role of the specialist

Neither the GPs nor the hospital doctors expressed clear
ideas of how palliative medicine should contribute to

heart failure care. A number had unsuccessfully tried to

refer patients to their local specialist service, and were

disparaging about the narrow remit of the specialist

palliative care service. However, the strongest emotion

was expressed by some of the GPs and geriatricians, who

were keen not to hand over their patients to another

specialty.

After all you know the mortality of life is 100%,

everybody is dying, so what is the difference between

palliative care and good medical practice? You know

there are textbooks of palliative care and there are

palliative care ‘specialists’, why palliative care, why not

just an ordinary doctor? Its sort of a speciality driven
by prognosis rather than anything else, because there

are lots of chronic disease that we look after that we

can’t cure they don’t come under the umbrella of

palliative care � diabetes for example. (GP 1/3)

A few individuals described examples of successfully

using advice from their local consultants, but others felt

that palliative care physicians may not have the expertize
that they had to deal with heart failure. The palliative

care doctors’ vision of themselves as educating health

professionals to provide most of the support had, on the

whole, not been embraced by the other doctors. The

general physicians acknowledged that there was ‘a lot of

specialism in palliative care already that we don’t really

use sufficiently. . .’ (General Physician 1/4), and their
communication skills were highlighted in particular.

Permission to fail

The cardiologists were frank in admitting their dislike of
failure, which was how they perceived the death of a

patient. In other groups, failure was not always articu-

lated, but it was apparent as they described struggling to

find the right words for relatives, the limited time they

had for dying patients on ward rounds and the difficulty

of accurate prognostication. The palliative care physi-

cians were widely admired for having the ability to ‘fail

well’. The introduction of the specialty appeared to be a

Doctors’ understanding of palliative care 495

relief for some doctors, and permission to let go.

However, a number of doctors in different specialities

were concerned at the message this sent to the patients,
and one described the attention from specialists as

‘ghoulish’.

The specialists’ view

Discussion amongst the consultants in palliative medi-

cine displayed a shared clarity over their own role in

patient care, as advisors, educators, and expert resources,

there to take a holistic view. Their experience of confu-

sion, ignorance and misperceptions about their role from
non-specialist doctors supported much of what had been

said in the other groups. The concept of looking at

palliative care patients ‘with the right eyes’ was how one

participant eloquently described the way in which they

wished to promote a different perspective on patient care.

Respect for the skills of the other specialties pervaded the

discussion, and a willingness to take some responsibility

for any uncertainty that surrounds their role.

But unless you have the right eyes to actually identify

what can be done within that generalist setting. . . there
is a lot of ignorance around about what can be done.

(Palliative Care Physician 3)

I think primary care can be very uncertain about when

to refer to specialist palliative care. . . a lot of it is our
fault, because we could all reel off the WHO definition

and the Calman Hine definition. . . but we’re not very
good at marketing and making it clear as to when we

get involved. (Palliative Care Physician 1)

That doesn’t mean we’ve got all the knowledge and

they need all the teaching. . . its working as a team and
learning how best to get things done. (Palliative Care

Physician 6)

Discussion

Our study participants displayed an understanding of the

wider concept of palliative care, but relatively poor grasp

of the role of the specialist in palliative medicine, and

scepticism about their role beyond cancer. There was also

a strong perception that palliative care is the province of

nurses rather than doctors. The other area of uniformity

across the groups was a feeling that palliative care was
something important, even though some of the non-

specialists had had difficulty in coming to an under-

standing of how all the health professionals fitted in, and

had some uncertainty about what it meant in practice.

Differences between the specialties were more clear-cut.

The GPs and geriatricians were generally familiar with

talking about death, appeared to be the most receptive to

the concepts of palliative care. The cardiologists and

physicians were less comfortable with the death of

patients, perhaps because it ill fits their perception of

their role and the day-to-day orientation of their practice.
They welcomed the practical help of the specialists.

Limitations

The themes described here offer a unique insight into

doctors’ understanding of palliative care, and raise issues

for further research. However, we acknowledge that our
participants’ views may not be typical. With the excep-

tion of the GPs who received locum payments, they were

not rewarded for their involvement. The extent to which

the views offered provide an accurate picture of physi-

cians’ practice is unknown, and the use of standard

definitions by some participants to describe palliative

care may reflect a willingness to conform to accepted

norms. By combining responses to a direct question with
implied and direct references throughout the discussions,

we have tried to overcome this potential limitation. At

times, the term ‘palliative care’ was used by interviewees

to refer to specialist services and, elsewhere, to a

palliative care approach. Which of these meanings was

being used was usually clear from the context of the

discussion. In general, we chose not to interrupt the flow

of discussion by stopping repeatedly for clarification.
The focus groups consisted of single speciality groups;

either all GPs, or all doctors from one hospital speciality.

The advantages of this approach were that the partici-

pants had a shared understanding of each other’s work.

In many cases, they already knew each other, which

helped to overcome some of the barriers to free-flowing

conversation often found in the initial stages of focus

groups. Single speciality groups also helped minimize the
potential for disruptive power relations between the

interviewees. Had the groups been mixed between GPs

and consultants, it is possible that perceptions of a higher

status amongst hospital doctors may have prevented their

GP colleagues from expressing themselves honestly.

Potential disadvantages of not mixing the specialities

included the possibility that the interviewees would have

a uniform view on some issues, and there would be few
challenging voices. Conforming to group norms could be

especially evident amongst what is an inherently con-

servative group.

Implications

Our participants were familiar with the concepts of
palliative care. Their thoughtful discussion of the holistic

aspects of care of the dying suggests that a lack of

knowledge would not prevent them from delivering good

palliative care. Most participants also knew their local

consultants in palliative medicine, yet many admitted to

little idea of what they actually did. This may be because

working practices are different in palliative care; the

multi-disciplinary team and the advisory nature of much

496 B Hanratty et al.

of the doctors’ work are better developed than in many

other specialities. However, the strong perception that

end-of-life care is a nursing role may mean that doctors
fail to see the relevance to their own work. The specialist

palliative care team may inadvertently reinforce such

perceptions, by the way in which they work. Qualities

that contribute to an effective team � valuing the
contribution of different disciplines, respect for alterna-

tive viewpoints, for example � can also be interpreted as
signs that a doctor is not needed. Hierarchies are still

entrenched in medical practice, and this must underpin
many of these challenges.

The hospice movement has been a successful advocate

for the development of holistic care of the dying.

Palliative care has a place in many undergraduate and

postgraduate curricula, albeit limited.
18,19

The deficien-

cies of the knowledge base have been well described in

recent years,
18 � 22

and educators are increasingly looking

beyond the sharing of knowledge, to focus on more
effective ways of changing behaviour.

23,24
Our partici-

pants are likely to be typical of today’s consultants and

GPs, having had little or no formal training in palliative

care. Whilst not lacking knowledge, they displayed

attitudes that may prevent them from providing good

palliative care. For example, the ‘failure’ of death was

discussed, as was the negative focus on survival within

palliative care. For many doctors, the attitudes, beliefs,
and self-perceptions that underpin professional practice

may be potent barriers to holistic care.
12

Our work

certainly suggests that greater emphasis on these within

educational strategies may be beneficial. Challenging

attitudes to medical roles is a long term project, but

change is more likely as palliative care becomes firmly

established within medical schools. Evaluative research

into the most effective approaches to professional
behavioural change within palliative care settings would

be helpful.

Acknowledgements

This study would not have been possible without the

participants giving generously of their time and energy to
participate in the focus groups. We gratefully acknowl-

edge financial support from the Mersey Primary Care

Research and Development Consortium and the Scien-

tific Foundation Board of the Royal College of General

Practitioners.

References

1 Bosanquet N. New challenge for palliative care. BMJ
1997; 314: 1294.

2 Fordham S, Dowrick C. Is care of the dying improving?
The contribution of specialist and non-specialist to
palliative care. Fam Pract 1999; 16: 573 �79.

3 Mills M, Davies HTO, Macrae WA. Care of dying

patients in hospital. BMJ 1994; 309: 583 �86.
4 Smith R. A good death. BMJ 2000; 320: 129 �30.
5 Saunders C. The evolution of palliative care. J R Soc

Med 2001; 94: 430 �32.
6 Hospice Information Service Factsheet 3 . Hospice In-

formation Service, 2000.
7 Rogers AE, Addington-Hall JM, Abery AJ, et al .

Knowledge and communication difficulties for patients

with chronic heart failure: qualitative study. BMJ 2000;

321: 605 �607.
8 Murray SA, Boyd K, Kendall M, Worth A, Benton TF,

Clausen H. Dying of lung cancer or cardiac failure:

prospective qualitative interview study of patients and

their carers in the community. BMJ 2002; 325: 929.
9 Shipman C, Addington-Hall JM, Barclay S, et al .

Educational opportunities in palliative care, what do

GPs want? Palliat Med 2001; 15: 191 �96.
10 Burge F, McIntyre P, Kaufman D, Cummings I, Frager

G, Pollett A. Family medicine residents’ knowledge and

attitudes about end-of-life care. J Palliat Care 2000; 16:

5 �12.
11 James CR, Macleod RD. The problematic nature of

education in palliative care. J Palliat Care 1993; 9: 5 �10.
12 Hillier R, Wee B. From cradle to grave: palliative

medicine education in the UK. J R Soc Med 2001; 94:

468 �71.
13 Greco PJ, Eisenberg JM. Changing physicians’ practices.

N Engl J Med 1993; 329: 1271 �74.
14 Graham I. I believe therefore I practise. Lancet 1996;

347: 4 �5.
15 Office for National Statistics. Mortality statistics, gen-

eral: review of registrar general on deaths in England and

Wales. Stationery Office, 1998.
16 Fraser D. QSR NVivo reference guide, second edition.

Qualitative Solutions and Research Pty., Ltd., 1999.
17 Glaser BG, Strauss AL. The discovery of grounded

theory: strategies for qualitative research . Aldine, 1967.
18 Barclay S, Todd C, Grande G, Lipscombe J. How

common is medical training in palliative care? Br J Gen

Pract 1997; 47: 805.
19 Lloyd-Williams M, Carter YH. General practice voca-

tional training in the UK: what teaching is given in

palliative care? Palliat Med 2003; 17: 616 �20.
20 Herzler M, Franze F, Assadullah K. Dealing with the

issue ‘care of the dying’ in medical education � results of
a survey of 592 European physicians. Med Educ 2000;

34: 146 �47.
21 Barclay S, Wyatt P, Shore S, Grande G, Todd C. Caring

for the dying: how well prepared are general practi-

tioners? A questionnaire study in Wales. Palliat Med

2003; 17: 27 �39.
22 Oliver D. Training in palliative care. Br J Gen Pract

1998; 48: 1095.
23 MacLeod R. Learning to care: a medical perspective.

Palliat Med 2000; 14: 209 �16.
24 Nelson W, Angoff N, Binder E, et al . Goals and

strategies for teaching death and dying in medical

schools. J Palliat Med 2000; 3: 7 �16.

Doctors’ understanding of palliative care 497

<< /ASCII85EncodePages false /AllowTransparency false /AutoPositionEPSFiles true /AutoRotatePages /All /Binding /Left /CalGrayProfile (Dot Gain 20%) /CalRGBProfile (sRGB IEC61966-2.1) /CalCMYKProfile (U.S. Web Coated \050SWOP\051 v2) /sRGBProfile (sRGB IEC61966-2.1) /CannotEmbedFontPolicy /Warning /CompatibilityLevel 1.4 /CompressObjects /Tags /CompressPages true /ConvertImagesToIndexed true /PassThroughJPEGImages true /CreateJDFFile false /CreateJobTicket false /DefaultRenderingIntent /Default /DetectBlends true /ColorConversionStrategy /LeaveColorUnchanged /DoThumbnails false /EmbedAllFonts true /EmbedJobOptions true /DSCReportingLevel 0 /EmitDSCWarnings false /EndPage -1 /ImageMemory 1048576 /LockDistillerParams false /MaxSubsetPct 100 /Optimize true /OPM 1 /ParseDSCComments true /ParseDSCCommentsForDocInfo true /PreserveCopyPage true /PreserveEPSInfo true /PreserveHalftoneInfo false /PreserveOPIComments false /PreserveOverprintSettings true /StartPage 1 /SubsetFonts true /TransferFunctionInfo /Apply /UCRandBGInfo /Preserve /UsePrologue false /ColorSettingsFile () /AlwaysEmbed [ true ] /NeverEmbed [ true ] /AntiAliasColorImages false /DownsampleColorImages true /ColorImageDownsampleType /Bicubic /ColorImageResolution 300 /ColorImageDepth -1 /ColorImageDownsampleThreshold 1.50000 /EncodeColorImages true /ColorImageFilter /DCTEncode /AutoFilterColorImages true /ColorImageAutoFilterStrategy /JPEG /ColorACSImageDict << /QFactor 0.15 /HSamples [1 1 1 1] /VSamples [1 1 1 1] >>
/ColorImageDict << /QFactor 0.15 /HSamples [1 1 1 1] /VSamples [1 1 1 1] >>
/JPEG2000ColorACSImageDict << /TileWidth 256 /TileHeight 256 /Quality 30 >>
/JPEG2000ColorImageDict << /TileWidth 256 /TileHeight 256 /Quality 30 >>
/AntiAliasGrayImages false
/DownsampleGrayImages true
/GrayImageDownsampleType /Bicubic
/GrayImageResolution 300
/GrayImageDepth -1
/GrayImageDownsampleThreshold 1.50000
/EncodeGrayImages true
/GrayImageFilter /DCTEncode
/AutoFilterGrayImages true
/GrayImageAutoFilterStrategy /JPEG
/GrayACSImageDict << /QFactor 0.15 /HSamples [1 1 1 1] /VSamples [1 1 1 1] >>
/GrayImageDict << /QFactor 0.15 /HSamples [1 1 1 1] /VSamples [1 1 1 1] >>
/JPEG2000GrayACSImageDict << /TileWidth 256 /TileHeight 256 /Quality 30 >>
/JPEG2000GrayImageDict << /TileWidth 256 /TileHeight 256 /Quality 30 >>
/AntiAliasMonoImages false
/DownsampleMonoImages true
/MonoImageDownsampleType /Bicubic
/MonoImageResolution 1200
/MonoImageDepth -1
/MonoImageDownsampleThreshold 1.50000
/EncodeMonoImages true
/MonoImageFilter /CCITTFaxEncode
/MonoImageDict << /K -1 >>
/AllowPSXObjects false
/PDFX1aCheck false
/PDFX3Check false
/PDFXCompliantPDFOnly false
/PDFXNoTrimBoxError true
/PDFXTrimBoxToMediaBoxOffset [
0.00000
0.00000
0.00000
0.00000
]
/PDFXSetBleedBoxToMediaBox true
/PDFXBleedBoxToTrimBoxOffset [
0.00000
0.00000
0.00000
0.00000
]
/PDFXOutputIntentProfile ()
/PDFXOutputCondition ()
/PDFXRegistryName (http://www.color.org)
/PDFXTrapped /Unknown
/Description << /FRA
/ENU (Use these settings to create PDF documents with higher image resolution for improved printing quality. The PDF documents can be opened with Acrobat and Reader 5.0 and later.)
/JPN
/DEU
/PTB
/DAN
/NLD
/ESP
/SUO
/ITA
/NOR
/SVE
>>
>> setdistillerparams
<< /HWResolution [2400 2400] /PageSize [612.000 792.000] >> setpagedevice

AUTHORSAUTHORS 98

University of Strathclyde
Glasgow, Scotland

Charles Sturt University
New SouthWales, Australia

Royal College of Art
London, England

He split this position with the University of Southern Denmark. Before that
he was Professor in Design Pedagogy at Northumbria University UK, and
before that Professor of Design at the University of Canberra, where he was
also Dean of the Faculty of Design & Architecture. His research deals with
developing methods to discover how and why we don’t know much about
the idea of design, as well as finding ways to clarify the reason why “not-
knowing” is an essential and valuable beginning point of practice.
oint position he was Professor in Design Pedagogy at Northumbria University UK,

Currently, he is pursuing a doctoral program in Global Innovation Design
at the RCA, where he is investigating trust design at the intersection of AI,
ethics, futures, and society. His research has been published and
presented internationally at conferences at MIT, The University of
Cambridge, The University of Manchester, the University of Côte d’Azur,
The Design Museum or The Royal College of Art. He holds undergraduate
studies in Structural engineering and Product design, and masters in
Cognitive computing and Design research from Goldsmiths.jointpositionhe

Prior to this position, He was Professor of Design at Imagination, Lancaster
University. He is also the Arts and Humanities Research Council (UK)
Design Leadership Fellow (2017 – 2020). He has undergraduate and
postgraduate degrees in design from Middlesex University, London and a
PhD in product design assessment from the University of Westminster,
London. He is the author of 9 books including The Routledge Companion
to Design Research. (Routledge, Oxon, 2015). Among several editorial
positions, Professor Rodgers is an Editorial Board Member of the Design
Studies journal.

INTRODUCTIONINTRODUCTION

The Covid-19 crisis and the designed interventions we have catalogued in
this book appear to prove definitively that design does care. We have
documented this as it evolved every day from the 1st of January 2020 to 31st

May 2020 inclusive. As the cover and back cover, influenced by the work of
Sean Clarke, Antonio Voce, Pablo Gutierrez and Frank Hulley-Jones at The
Guardian’s 100 days project, illustrate, we look at all of this care and caring
from the point of view of design and, by the sheer volume of design
interventions we have documented, illustrate that design is good in a crisis.

What the Covid-19 pandemic has illustrated is that for the first time in
modern history capital was totally irrelevant. Money could not save your life.
Only design could. Rapidly designed masks, shelters, hospitals, instructional
posters, infographics, dashboards, respirators, sanitisers, virtual and local
communities emerged to save us. From January 2020, design became king.
The Covid-19 global pandemic presented an ontological reality; design is
more than margins or profit. In fact, design became extremely valuable when
it stopped concentrating on those things and started to care about peoples’
lives. This brief episode in history is repositioning the status of design and
reconfiguring its signifier from consumption to care.

In a recent interview for Design Emergency – a project that explores design’s
role and impact on the COVID-19 crisis and its aftermath – Alice Rawsthorn
interviewed Dries Verbruggen, co-founder of Creatives tegen Corona
(Creatives against Corona), “a collaborative network in Antwerp, started in
response to the urgent need for personal protective equipment by Belgian
health and social care workers in the Covid-19 crisis…” (Rawsthorn, 2020).
Creatives tegen Corona used volunteers and created a not-for-profit
company to deal with the situation by creating garments with donations,
collaborated with a multiplicity of experts, and made their designs open-
access. No money. No profit. No margins. Only caring for others. This is an
example of how design excels and illustrates what design can be. If the inter-
period between world wars repositioned economics from the margins to
centre-stage, this crisis, which is not an economic crisis, but a design crisis,
could reposition design from the margins to centre-stage.

However, this should not come as a surprise. Design’s turn from the overtly
commercial to a wider social agenda is not new. Design has long despised its
profitmaking and wasteful nature articulated by key figures such as Victor
Papanek (Papanek, 1985), Ken Garland (Garland et al, 1964) and, more
recently, by Anthony Dunne and Fiona Raby (Dunne, 2005) who argue for
design that makes us think instead of making us buy. Design researcher Matt
Malpass presents a multitude of design practices in the emancipatory-social-
science spectrum such as Associative Design, Co-design, Transition Design,
the aforementioned Speculative and Critical Design, Design Fiction, Design
Activism, Socially Responsible Design, Participatory Design, Meta-Design,
Transformation Design, Conceptual Design, Post-industrial Design, Social
Design, Open Design, Design as Politics, or Sustainable Design (Malpass,
2017: 9).

In his critical paper, “On Design and Disillusion”, Silvio Lorusso highlights the
recent rise in labels like “social design”, “critical design”, and “speculative
design”and how each of these iterations contributes to a spectacle of design
super-heroes versus societal problems – packaged in events like the Dutch
What Design Can Do, a platform created to “…demonstrate the power of
design; to show that it can do more than make things pretty. To call on
designers to stand up, take responsibility and consider the beneficial
contribution that designers can make to society.” (Lorusso, 2019: 110).

Whilst there is mileage in Lorusso’s argument that design loves a challenge
such as the “refugee challenge” or the “climate change challenge” where
design positions itself as “…the ultimate problem-solving discipline”,
superior to governments or NGOs…” where “…global tragedies become
design opportunities”, there can be no doubt that the 500+ projects
documented in this book are legitimately aiming to make things better for
people.

We also consider this book to be one more of the 500+ projects we have
assembled. It is a design response to the Coronavirus pandemic because we
could see the need to collect all this material and assemble it as a durable
record for all time because “…we need to learn to live in a world that is

1312

INTRODUCTIONINTRODUCTION

interconnected not only ethereally or ideally, through communication
technologies, but also materially, via direct embodied contact. In short, we
must learn to live in a reality that may, at any moment, go viral.” (Marder,
2020).

In this context, Bruce Archer went some way in 1978 to proposing design as
a third culture of thinking. This approach was deepened by Nigel Cross in his
seminal paper Designerly Ways of Knowing. Building on Archer’s work at the
Royal College of Art, he describes this third culture as: “…the collected
experience of the material culture, and the collected body of experience, skill
and understanding embodied in the arts of planning, inventing, making and
doing.” (Cross, 1982: 221). This is exactly what we have done in this book.

While leaderships were floundering, design (together with volunteers and
the general public) was at the forefront of stepping in and sorting out many
of the most significant problems during the Covid-19 crisis. Very obviously,
planning, preparedness, readiness, and appropriateness, which are
fundamental characteristics of design, were found wanting when many
country’s carefully-constructed and trialled global pandemic plans were put
into action. As Lydia H. Liu asks: “…how do we end up in a state of
unpreparedness in the midst of advanced preparedness?” (Liu, 2020) One
answer presented endlessly by a critical media was that the Capital Project’s
search for maximum profit appeared to have undermined many countries’
public health system’s crisis capacity. The voids in pandemic plans enabled a
space for potential interventions and, since there was nothing in place,
design stepped up and stepped up very visibly. This book maps this response
to build preparedness and to build a case for just how important to
governance design and care are. From the massive number of cases
assembled in this book, governments should have no choice but to
recognise design’s capabilities and integrate designers into an expanding
concept of lasting care.

Every project in this book attempts to fill the shameful gaps left by the
Capital Project when it extracted preparedness from the balance sheets of
the world’s healthcare systems. In what was beginning to look like an

unthinkable-world, these design projects care for people who clearly had
both thinkable and previously unthinkable needs. As Joan W. Scott (2020)
describes “The pandemic has exposed yet another of the fault-lines of our
moment: the difficulty of imagining ourselves beyond the current worlds in
which we live.” (Scott, 2020) The ability to imagine possible futures or future
possibilities or what-might-become is the historic territory of design, the
designer, and the act of designing. Or at least it used to be. But as Franco‘Bifo’
Berardi maintains we were already living through the ‘slow cancellation’ of
the future where what-might-become is morphing into what-might-not
become (Berardi, 2011).

This temporal contest – present versus future – is also a mental space
occupied by administrations as Mike Davis points out: “On the same day that
the president was bragging of the United States’ unmatched scientific and
technological superiority,” the New York Times was devoting a page to “How
to Sew a Mask at Home.” (Davis, 2020b) Again, Joan W. Scott broadens this
temporal contest when she compares past and future: “Sometime in the
twentieth century, we lost our belief in the redemptive power of history and
so in the guarantee of a better future.” Again, this resonates strongly in the
world of design where many seem to ignore or are ignorant of historical
accounts of design[ing] and fall into the trap of reinventing the wheel. By
compiling this impressive and comprehensive response to Covid-19, we
partly redeem some of design’s temporal confusion – seeing no future in the
past, locked in an imitative loop in the present while imagining it is designing
the future. A response of this magnitude, showing what design can do, also
partly redeems design’s unwillingness to take responsibility for what design
does. And prior to design’s response to the Covid-19 crisis the state of design
might best have been described as being trapped in a number of paradoxes
– sustaining the unsustainable, disciplining the undisciplined, reconciling
future visions with harsh realities, and others (Rodgers et al, 2017). In the case
of the coronavirus pandemic, the context is paradoxical (combating an
invisible enemy) and we have had to make many undesirable choices (e.g.
lock down or die!). But dilemmas are what design confronts constantly in
practice. For instance, the contradiction of designing a tracking system to
help, but which implies invading somebody’s privacy.

1514

INTRODUCTIONINTRODUCTION

The Covid-19 design responses acknowledge our material and energy flows
and environmental impact and contests the legitimisation of power – to
respond is to be responsible and many governments are being criticised for
their irresponsible response. As we have said, and as the 500+ interventions
in this book show, design has proved that in a crisis it cares.

It is possible that all of this, both the known and the unknown, must have
been chronicled in non-stop media coverage. But like the contents of this
book some of this can be analysed. The website “Coronavirus Readings” (URL
is in the references) allows users to “…browse and search a wide range of
analysis and commentary relevant to COVID-19 – across text, video and audio
in multiple languages”. At the time of writing there were over 12,500
contributions. Half were produced in English and the rest in seven other
languages. Journalism makes up 90% of the database. It already lists two
books (to the best of our knowledge there are already 5 books). The topic
‘future’makes up only 3.5% of the readings, which doesn’t seem to align with
the vast amount of journalism competing to predict the effect of the
pandemic as the long-awaited opportunity to think and do everything anew
– what is dubbed the new normal. This output aligns with our research, were
most of the work included was discovered by searching the specialist
blogsphere coverage of the event. Their agility and connectivity provided an
in-the-moment space for enquiry. In contrast to the relentless media
speculation competing to project both evermore worse or forever better
future scenarios, this book functions as a ‘history’ – a history of the design
reaction to Covid-19.

This book is organised in a pure chronological order as a history of design
interventions. We have listed everything chronologically – day-by-day from
1st of January 2020 to 31st May 2020 inclusive. This temporal span, based in
the UK, encompasses the outbreak of the virus, the lockdown period, and the
reopening. Accounting for 500+ design interventions in total. These
interventions are a record of places, dates, embodiments and strategies by
which to extract knowledge. The proposed chronological structure operated
as a type of index system that we have operationalised by articulating several
graphic organisational frameworks enables projects to be cross-referenced

and compared. By using chronology to frame the assembly of this book we
uncover evolutive traces. For instance, posters are first instructional, then
emotional, and then they become political. In terms of Personal Protective
Equipment (PPE), we observed transparent masks becoming simplified over
time. The first models were complex and 3D-printed. The latest models are a
sheet of plastic with 2 holes and a band, thereby removing the need for 3D
printers, and enhancing production and sustainability in the process.
Furthermore, we have discovered how at the beginning of this crisis, due to
a shortage of products, it was a combination of professionals, individuals,
groups and communities that stepped forward to fill the gaps left by errant
public policy, planning and preparedness. We witnessed that once the
systems of production adapted and started to produce/import those goods,
the civil production of initiatives/goods decreased in cycles in different
countries. We also discovered that this was true for the West. In the East,
everything was produced by the state.

Slavoj Žižek (2014) would classify the virus as: “…an event at its purest and
minimal: something shocking that happens all of a sudden and interrupts
the usual flow of things; something that appears out of nowhere, without
discernible causes, and whose ontological status is unclear – an appearance
without solid being as its foundation”. As a“history of…”, an assembly of what
design did between 1st January and 31st May 2020, this book does what Žižek
defines as to de-eventalize the event. That is, to explain it as an occurrence
that fits the coordinates of our normal reality. Because this is what this book
is – an ontology of design. It aims to understand what has happened. This
typology will complement traditional epistemological models focusing on
how we did it.

One gets a slightly different picture when Mike Davis, who painted the
complete picture of global pandemics in his 2005 book, “The Monster at the
Door”, launches yet another of his denunciations of the global disbelief with
a line: “So Corona walks through the front door as a familiar monster.” As an
organising system, chronology allows us to transverse the familiar and the
unexpected dimensions of the pandemic event. A design ‘history of…’ the
pandemic is also reliant on the history of design, which helps comprehend

1716

INTRODUCTIONINTRODUCTION

some of the darker aspects of pandemic behaviour. Under the murky banner
of Black Design, the radical designers in Italy in the 1970s prefigured design’s
entanglement with unthinkable events with designs for death and dying
(Mendini, 1983). In the hands of the radical designers, Black Design was a
critique of the barbarism of mass-consumption. In contrast one unthinkable
event resulting from the pandemic was a scoring card system released to
determine who should live and who should die. Even the thought of this
calculation is a type of design; a black design that defies every notion of care
illustrated here.

Now we know that things can be otherwise. In this book, the interesting
thing is that we have been able to build arguments. For example, we are
finding that biological tests are the best solution (they range from kits to
dogs sniffing – a kind of interspecies design), and that tracing apps are
dangerous and irrelevant. What is fascinating is that all the technologists
who wanted to save the world have totally disappeared. Where are they?
Sending boxes of useless stuff all over the planet or sending rockets to Mars
while sending governments a fraction of their taxes?

In line with what Joan W. Scott describes (citing Foucault) as the relationship
between critical thinking and protest as insubordination – “…not like that,
not for that, not by them…”. Of the 500+ design cases that we have collected
and present in this book, many of these are forms of protest. Here, the
designed interventions are often designed, manufactured, and distributed
by small groups of design activists and/or by individuals who have
responded in the face of almost total neglect from our political leaders.

The contents of this book cover the outbreak, lockdown, and the beginning
of the reopening in the UK. In between, the book functions as a history of
pandemic crisis design interventions. As such it is a“research-in-the-moment
project” where we illustrate our thoughts and insights in tables, charts and
diagrams. We have accepted all design interventions as valid and gave them
the same role and status by presenting each of them on a single page. No
curation. No selection. No position. The task of critical analysis must follow –
perhaps by us, certainly by others. At this stage of the Coronavirus pandemic,

where this book is an integral project of response/protest, any attempt to
designate or distinguish or select projects will promote a notion of a “good
design” and by default demote the rest. This is a typical approach applied by
the museum sector concerned with the classification of types. Already some
of the projects collected here are finding their way into the time capsules of
museums via projects like Pandemic Objects at the V&A, London. In contrast
to these archival practices, the rapid spread of the pandemic around the
globe mirrors the fluid global information flows. Only when the viral
chronicling ends will critical analysis of design’s response to the coronavirus
be applicable. Only then will we be able “…to think about these social ills,
and so, about what might constitute a cure for them that the pandemic has
so glaringly exposed.” (Scott, 2020).

The 500+ design projects we have collected have been formatted
chronologically into a range of highly informative tables, charts, timelines
and images including the following:

• Chronological development, frequencies of interventions and type.
• Categorical analysis, type and impact
• Relational developments among categories, embodiments and enablers
• Relationships among typologies, phases (outbreak, lockdown and

reopening) and time
• Geographical developments and typologies
• Weighted hierarchical analysis of interventions and places
• Flow developments
• Product/ service/ system/ environment typologies evolution
• Development rationale and dynamics
• Aims/ needs/ worries/ concerns/ challenges

As Fred Block acknowledges “This is not the last pandemic we will face”
(Block, 2020). In the likely event of a second wave, and/or other pandemic or
emergency events, these insights lead a case to build preparedness for such
circumstances. This framework identifies key categories/ needs/ worries/
concerns and challenges. It also highlights the important roles that design,
designing, and designers might play.

1918

INTRODUCTIONINTRODUCTION

Before the projects catalogued in this book, design was certainly paradoxical
(Rodgers et al, 2017) and this is the context from which design designed its
way through the Covid-19 crisis. Despite this successful exit by design from a
list of binding paradoxes, new dilemmas are now emerging. As a result of all
the design projects assembled here, design must now make some
challenging choices. Will it go back to being the handmaiden of Capital or
abandon Capital to build on what it has achieved? For example, care and
community, while aiming for even bigger targets such as inequality and the
climate emergency, etc. That is, a new human condition? And the paradoxes
inevitably also become dilemmas – after the crisis, which way will design go?
If design chooses the hard route – the unknown knowns (Rodgers and
Bremner, 2019; Zizek, 2006) – then what do the projects in this book indicate
about how to design?

In the midst of the quarantine in Italy, Franco ‘Bifo’ Berardi wrote: “Use value,
long expelled from the field of the economics, is back, and the useful is now
king.” The 500+ design projects here add up to a history of the Covid -19 crisis
and we expect much of what is illustrated will disappear – so more than likely,
as a document, this book will be extremely useful forever.

Paul A. Rodgers, Craig Bremner, and Fernando Galdon

REFERENCES

• Archer, L. B., (1978) Time for a Revolution in Art and Design Education. RCA
Papers No. 6. Royal College of Art, London.

• Berardi, F.B., After the Future, AK Press, 2011.
• Block, F. (2020). I, Face Mask; A reconsideration of the classic essay, “I, Pencil”.

Public Seminar. Available from; https://publicseminar.org/2020/05/i-face-mask/
[accessed 31/05/2020].

• Coronavirus Readings, 2020, Available at https://the-politics-of-covid-19.com/
search/?size=n_30_n.

• Cross, N., (1982). Designerly ways of knowing, Design Studies, Vol. 3, No. 4
October 1982, pp. 221-227.

• Dunne, A. Hertzian Tales: Electronic Products, Aesthetic Experience, and Critical
Design, The MIT Press, 2005.

• Davis, M., The Monster Enters, New Left Review, 122 March-April 2020a.
• Davis, M., “Mike Davis: Reopening the Economy Will Send Us to Hell” Jacobin,

Available at https://jacobinmag.com/2020/04/mike-davis-economy-
coronavirus-crisis-trump [accessed 3 May 2020b].

• Garland, K., First Things First. 1964.
• Lorusso, S., “On Design and Disillusion”, in Paul A. Rodgers and Craig Bremner

(Eds.), Design School: After Boundaries and Disciplines, Vernon Press, Delaware,
USA, 2019, pp. 108 – 115.

• Liu, L.H., The Incalculable: Thoughts on the Collapse of the Biosecurity Regime,
Critical Inquiry, May 26, 2020, Available from: https://critinq.wordpress.com/
2020/05/26/the-incalculable-thoughts-on-the-collapse-of-the-biosecurity-
regime/ [accessed 27 May 2020].

• Malpass, M. (2017): Critical Design in Context. London, New York: Bloomsbury.
• Marder, M., The Coronavirus Is Us, New York Times, 03.03.2020, Available from

https://www.nytimes.com/2020/03/03/opinion/the-coronavirus-is-us.html
[accessed 4 March 2020].

• Mendini, A., “Progetto Infelice”, Milano: RDE-Ricerche Design Ed., 1983.
• Papanek, V. Design for the Real World: Human Ecology and Social Change.

London: Thames and Hudson, 1985.
• Rawsthorn, A. (2020). Alice Rawsthorn in conversation with Dries Verbruggen.

Instagram IGTV. Available from: https://www.instagram.com/tv/
CAyZSDYFmQB/ [accessed 29/05/2020].

• Rodgers, P.A., Innella, G. and Bremner, C., “Paradoxes in Design Thinking”, The
Design Journal, Supplement 1, Volume 20, 2017, pp. S4444-S4458, ISBN 978-1-
138-09023-1.

• Rodgers, P.A. and Bremner, C., “A is for Anthropocene: An A–Z of Design
Ecology”, LA+ Interdisciplinary Journal of Landscape Architecture, LA+ Design/
Spring 2019, pp. 110 – 115, ISSN: 2376-4171, ISBN: 978-1-943532-19-3.

• Scott, J.W., The Job of Critical Thinking Now, Public Seminar, May 7, 2020,
Available from: https://publicseminar.org/essays/the-job-of-critical-thinking-
now/ [accessed 10 May 2020].

• Žižek, S., Philosophy, the ‘‘unknown knowns,’’and the public use of reason, Topoi
(2006) 25, pp. 137–142.

• (Žižek, S., Event; A Philosophical Journey through A Concept, Brooklyn: Melville
House, 2014.

2120