Добавил:
Sekretar
kiopkiopkiop18@yandex.ru
t.me/Prokururor I Вовсе не секретарь, но почту проверяю
Опубликованный материал нарушает ваши авторские права? Сообщите нам.
Вуз:
Предмет:
Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_3090_Библиотеки_им_академика_М_И_Перельмана
.pdf
58 Chapter 5
community work it is sometimes difficult to gain a holistic
picture in one single sitting and it’s very unlikely that a
patient will give a whole picture of their life in the process
of one single clinical encounter. An assessment of needs
should be seen as patient led or patient centred, should be
seen as continuous and supplement, but not replace,
day-to-day assessment.
With particular reference to advance care planning,
summary records of assessments should be first agreed
with patients so that they know the information on which
decisions are being made, both by them and by health-
care professionals, and that this should be documented
and easily accessible for other health-care professionals.
The assessment should then perhaps best be done by dif-
ferent members of the clinical team or teams looking after
a patient and can be incorporated at a range of different
points during either their hospital stay or in multiople
encounters in clinic.
collection of comprehensive patient information to facili-
tate effective advance care planning. A holistic assessment
should concentrate on the impact on daily living, function
and quality of life. In addition to the physical, social,
psychological, and spiritual, Ahmed and colleagues also
incorporated a significant point, which is an ethical one.
The background information and assessment preferences
are significant in that they place the patient at the centre of
the assessment, thus respecting autonomy. The background
information about what patients want and what their needs
are and what they want assessed in the first place, as well as
managed, should be a significant feature of the assessment.
While it may not be feasible to undertake the kind of
holistic assessment that may be more typical of a hospice
admission in one session in the context of hospital pallia-
tive care, it may be possible to glean the same or similar
information. An alternative would be to undertake the
assessment over a number of sessions. As with hospice or
PEPSICOLA
A
After Care
L
Living with
Your Illness
O
Out of Hours
C
Control
Autonomy
I
Information
Communication
S
Social Support
P
Personal
E
Emotional
P
Physical
Figure 3 PEPSICOLA mnemonic for the holistic assessment of patients.
https://t.me/med1917
Hospital Palliative Care 59
may be their place of death. The task and energy of the
palliative care team then is to ensure the best quality of
death in hospital.
Audit and Quality Improvement
Clinical audit is a quality improvement process that seeks
to improve patient care and outcomes through systematic
review of care against explicit criteria…Where indicated,
changes are implemented…and further monitoring is
used to confirm improvement in healthcare delivery [39].
Quality improvement refers to the use of systematic
tools and methods to continuously improve the quality of
care and outcomes for patients [40]. It is arguable, of
course, that the whole project of the specialty of palliative
care is a global quality improvement (QI). Looking at the
history of palliative care, which grew from an increasing
recognition of the failures of health care as it existed at the
time in the care of the dying, it is easy to see that the efforts
Cicely Saunders and the early pioneers of palliative care in
symptom control, holistic assessment, psychological,
spiritual, and social care and the development of services
all served to improve the quality of living and dying with
advanced incurable disease. It should come as second
nature, therefore, to palliative care professionals to engage
in work towards further enhancing the care of patients
with palliative care needs by improving the clinical
processes around care. A self-critical attitude and a degree
of humility in assuming that we do not always offer the
gold standard of care, even in highly specialised settings
like hospices will foster a culture that constantly aims to
offer consistent improvements in care through audit and
quality improvement work.
The audit process is cyclical. The first task is to identify
the clinical practice to be examined, whether identified as
an issue of importance or a problematic concern. Having
identified the clinical issue to be studied or analysed, find-
ing best clinical standards allows a benchmark against
which current or historic practice can be measured. The
best practice can be in the form of a local, national, or
international clinical guideline for a particular clinical
practice or activity. The next task will be the collection,
either retrospective or prospective, of data measured
against the accepted criteria or standard. Such has been the
involvement over the years of palliative care professional in
audit and QI work that there exist many validated audit
tools to facilitate audit without palliative care teams need-
ing to invent their own [41, 42].
Audit becomes quality improvement when the cycle is
complete and where the changes resulting from the
Holistic assessments then are an essential part of the
work of hospital palliative care teams. As key feartures
they will incorporate the physical, emotional,
psychological, social, and spiritual needs of patients and
may borrow from assessments developed for a variety of
clinical purposes. They may not feature the extensive
complete assessment undertaken at admission to some
inpatient specialist palliative care units due to the demands
of time and balancing a larger patient number in an acute,
non-specialist palliative care environment. However, it
may be that with assesments collated over team by differ-
ent members of the team using complementary skills, it
may be feasible to assemble the relevant clinical
information needed to make clinical judgements as part of
patient-centred care and plan care holsitically in line with
patient needs and wishes.
Choice of Place of Death
The place of the patient in health policy – particularly in a
centralised health economy such as the United Kingdom
has, until relatively recent years been somewhat peripheral.
The policy shifts of the 1980s with an emphasis on patient
choice, brought with it, at least ostensibly a move to the
considerations of the patient being at the heart of policy.
Palliative care, with an explicit patient-centric focus has
sought to promote patient choice at the heart of this issue.
While it is certainly the case that the majority of patients
consistently express the view that they would like to die at
home [36], it is also the case that most patients do not and
indeed end up dying where they would explicitly rather
not die – in hospital [37].
From relatively early on in the history of hospital pallia-
tive care teams it became apparent that there was a disso-
nance between the expressed choice of patients for place of
death and where they actually ended up dying. For those
with access to palliative care services, preferred place of
death could be achieved in a majority of patients, but a
number of factors could be identified as confounding inten-
tions, like unexpected deterioration in clinical condition,
difficulties coping for families and carers and delayed or late
presentation precluding appropriate transfer [38].
There exists a tension for palliative care teams in
hospital. The aim of patient-centred care should be to
respect the expressed wishes, where possible of patients,
to facilitate the death they want, where they want it. While
this will be, for many, home, for others a number of
factors will come into play – the feasibility of getting
home if particularly dependent or if support is not avail-
able in their particular setting – meaning that hospital
https://t.me/med1917
60 Chapter 5
deploying resources and proficiency in service evaluation
and large-scale audit may be particularly useful in devel-
oping countries [48].
Differences from Other Settings
Palliative care seems to have struggled with a sense of iden-
tity over the first 40 years of its existence. At significant
points over that time there has been a number of supposed
existential crises about the nature of palliative care. There
does indeed seem to be a crisis of confidence about the spe-
cialty, about what it should do, where it should direct its
efforts or even whether the word “palliative” should be
abandoned as unhelpful [49]. Palliative care within hospi-
tals is an adjustment of an approach that should be appli-
cable everywhere. The significant challenges to the
application of palliative care are those of philosophy and
environment. Hospices are specifically designed to allow
an environment of peace and a routine that allows space for
the spiritual and the emotional, with room for families and
loved ones that may not be feasible in hospitals. Similarly,
the approach within hospitals of interventions which may
no longer be appropriate at the end-of-life may be in
conflict with the goals of good palliative care. In both cases,
the continuing task of the hospital palliative care team will
be one of negotiation and advocacy on behalf of patients
and relatives in terms of the provision of adequate or appro-
priate space for them, and with other teams to adjust their
approach to the goals of good palliative care (the avoidance
of unnecessary interventions, effetivepalliation and
addressing psychological and spiritual needs).
Ultimately the adaptability of palliative care has allowed
it to be delivered across a number of settings (particularly
across hospice, hospital, and community). The mainte-
nance of the distinction between these settings and the
approaches to them creates a degree of tension perhaps,
with hospitalists and primary care practitioners maintain-
ing the distinctiveness of their roles while at the same time
the palliative care approach being seen as a continuing uni-
fying presence. Unitary schemes of training, offering bal-
anced experience between training environments across
all palliative care settings should be encouraged to ensure
this continuing approach.
Team Roles
Clinical
The most obvious and central role of the palliative care
team in the hospital is clinical. While the particular set-
tings of palliative care teams in different hospitals (large
identification of variation from best practice noted in audit
become an action to change and improve practice. This
comprises the plan, do, check, act cycle (Figure 4) [43].
That audit and quality improvement enhances the
quality of care of patients with palliative care needs has
been borne out by a number of studies [44–47]. But
while there is much audit activity undertaken in pallia-
tive care as in many other areas of health care, it must be
borne in mind that the audit process should ideally be a
constant process of quality improvement. At times audit
may not result in positive change and it is important to
recognise the factors within the audit cycle that may
contribute to this. Often a key and missing stage may be
the fact that teams do not identify the underlying rea-
sons for failing to meet particular standards and in
avoiding this key point may avoid the at times challeng-
ing structural change required to implement meaningful
quality improvement [47].
It is evident that audit and quality improvement are
significant challenges for palliative care teams in all global
settings, including areas of the world where resources are
limited (indeed it is arguably more so given that effective
audit and quality improvement, should in theory, produce
the utilitarian effect of promoting the best and most effec-
tive services within the limits of the available resources).
While the general principles of audit and quality improve-
ment remain the same whatever the clinical environment,
there are particular contextual and local issues in particular
settings. The combination of local knowledge and the
experience of international collaborative organisations in
Plan
Check
Act
Do
Figure 4 Plan, Do, Check, Act cycle.
https://t.me/med1917
Hospital Palliative Care 61
would not be where they were “had it not been for the ther-
apies and insights developed within the modern hospice
setting” [6]. This is undoubtedly true but presents only
part of the story.
A more balanced view from the past 45 years of pallia-
tive care teams would be that of adapting the palliative care
approach to the hospital and using and adapting it in
conjunction with the teams with which they have had to
collaborate. More importantly, rather than adopting a mis-
sionary or evangelical stance in developing palliative care
for patients in hospitals, it has been more productive to
integrate into other hospital care teams. What is evident is
that the early and systematic integration of teams brings
significant benefits for patients [50].
Education and Teaching
The setting of the hospital palliative care team will
undoubtedly have a bearing on the teaching they can
undertake and the impact they can make on other teams.
Palliative care education is likely to make its greatest
impact where it reaches the greatest number of those who
are likely to have the greatest bearing on the care of patients
with palliative care needs. In highly specialised hospital
environments (for example, tertiary cancer centres) a focus
on the education of cancer specialists in a range of roles
(specialist nurses, doctors, and allied health professionals)
is going to be important.
In truth there is an educational role to every single
encounter between the hospital palliative care team and
other teams. This is particularly true of the encounter bet-
ween the team and less experienced professionals on
wards. There is always a thirst for knowledge about pallia-
tive care, which can seem to have esoteric knowledge in
areas of symptom control and communication. Taking
time with more junior members of staff to go through a
management plan for a patient, to get them to attend a
bedside or clinic consultation and witness the communica-
tion skills developed over years of significant conversa-
tions can have a lasting, if not life- or career-changing
impact if done with consideration and the aim of allowing
the other member of staff to grow and thrive.
Research
There are a number of structural, cultural, and ethical rea-
sons why palliative care research has perhaps taken a back
seat compared to the educational and clinical roles that
hospital palliative care has established in the decades of its
existence. One of the most obvious is financial, whereby,
certainly in the United Kingdom, a significant proportion
teaching hospital or district general hospital) will often
define differing roles and responsibilities or emphases, it is
clear that the palliative care team has a clinical orientation
(sometimes to the detriment of other roles). So it is that
whatever the setting, the palliative care team is likely to
have a clinical workload. Similarly, the orientation of a
particular hospital setting will necessarily set the perspec-
tive and the limits of a team seeking to meet the palliative
care needs of patients in hospital.
The setup of each hospital will of course determine the
orientation of the team and the skillset required by its
members. For example, the orientation, workload, and
skillset of a palliative care team in a district general hospital
differs from that in a large teaching hospital or tertiary spe-
cialist unit (for example a specialist cancer hospital). While
it may seem obvious or trivial to mention this, it has
significant implications for training, staffing, and
development. For example, a team in a large teaching
hospital with specialist teams for the management of com-
plex cancers will need not only experience and confidence
in managing these cancers and their complications, but
also the ability to manage such patients in the setting of the
intensive care unit where they may spend time during their
illness. This will bring with it the necessity to take on and
accommodate the ethical and technical issues at stake,
which may be at variance with encounters elsewhere in the
hospital. Similarly, the presence of members of a palliative
care team in a disease clinic (for example for multiple scle-
rosis or lung cancer) emphasises both the integration of
palliative care into the normal care and enhances opportu-
nities for earlier and more effective intervention. In every
hospital there will of necessity be a reorientation to the
ethos of differing departments with which palliative care
teams may need to engage, from gerontologists who may
have an instinctive understanding and wide experience of
natural death in hospital to a plastic surgery unit oriented
to cure who may have few deaths a year. In addition to the
differing specialties encountered, teams will have to
accommodate changing configurations over years and
decades as hospitals and health services reorganise and
reconfigure. A constant awareness of the organisations in
which teams work, their strategic direction, and the wider
context of health care is a perennial task for hospital palli-
ative care teams.
The initial role of palliative care teams in hospitals
seemed to be to overtly missionary – to bring the ideas
developed in hospices into a hospital setting. David Clark
tells us that “Hospice ideals and practices began to be dis-
seminated into other settings from the 1970s” [4] while
Dunlop and Hockley assert that palliative care teams
https://t.me/med1917
62 Chapter 5
coordination necessary for effective change may be dif-
ficult where a population is served by a health board or
trust for hospital inpatients, an independent hospice
and an entirely separate community team, each with dif-
ferent management structures and sources of funding.
Similarly, sustainable development across sectors may
again be difficult when reliant on charitable funding.
Perhaps, however, the greatest feat of leadership we
can undertake is simply doing our job. The everyday
work of a palliative care teams incorporates each of the
elements outlined above: we teach, we inquire, we lead
others by breaking through decision-sclerosis and
encouraging realistic decision-making with patients’
values at their core. It is easy to forget at times how the
mere presence of a specialist palliative care team has a
significant but imperceptible effect on the culture of
clinical practice, acting as a leaven on the culture within
a hospital.
How Effective are Palliative Care Teams?
The question of the effectiveness of hospital palliative care
teams is an unusual one that has occupied inordinate
attention in the literature of palliative care [55–57].
Specialisation has been a feature of medicine that gained
increasing momentum in the nineteenth century and has
accelerated into areas of sub-specialisation. There will
always be the tension within health care – nursing, medi-
cine, and allied health professionals – in the holism of the
generalist and the need for highly specialised knowledge of
some conditions. Palliative care straddles an uncomfort-
able balance between a generalist subject – everyone dies
and every hospital contains dying patients – and the fact
that the specialty has accrued, over the half century of its
existence, a valuable body of knowledge and skills which it
can apply in a hospital setting.
As has been outlined, palliative care professionals
attempted to ensure the provision of palliative care in a
hospital setting. Unlike more established specialties, in an
era where there is a demand for evidence of effectiveness to
justify the allocation of resources, palliative care has felt
the need to assess its own contribution in terms of patient
outcomes. Assessing the effectiveness of palliative care
teams is methodologically difficult as the interventions are
often complex and have multiple variables which are diffi-
cult to adjust for. The methodology of systematic reviews
and randomised controlled trials may just not be adequate
to demonstrate the complex interventions – pharmacolog-
ical, psychological, social, and spiritual – that palliative
care teams provide.
of the funding of core services in hospices are through
charitable fundraising. The obvious corollary of this is that
were core services fully funded by government, the fund-
raising of palliative care organisations could be then
directed towards funding research [51]. That is not to say
that there are not laudable examples of charitable funding
of research through organisations such as Marie Curie and
Macmillan. There are other reasons for the sometimes
infuriatingly limited evidence base of palliative care.
Research within palliative care can be challenging because
of a degree of logistic and ethical issues around dealing
with patients. By their very nature, patients with advanced
life-threatening disease are notably frail and this presents a
problem of recruitment and attrition in palliative care
trials. There are similarly ethical issues in conducting
trials at the end-of-life and ethics committees are under-
standably cautious about trials involving this group of
patients [52].
There is however, some cause for optimism. Research in
palliative care is steadily increasing and this will bring with it
the benefits of a critical mass of research-skilled palliative
care clinicians able to collaborate to bring about good-qual-
ity, and impactful research. This will bring with it the
prospect of larger scale, multi-centre national and interna-
tional studies. Disciplinary backgrounds including basic sci-
entists, social scientists, and clinicians are required for
effective collaboration [53]. Research collaboration with
existing networks and using the research training that exists
within universities and other educational institutes to acquire
generic skills will be essential for future research advances.
Leadership
The history of palliative care has been one from the
beginning of challenging existing models of care and
developing new ones across a range of different settings. In
addition to outlining the roles of clinical, education,
teaching, and research outlined above, Cicely Saunders
highlighted the dynamism of early pioneers and the fact
that palliative care would have to engage with differing
health sectors so that it would be able to:
hold its position between specialist teams with continually
developing expertise and the general challenge to all that
patients should have skilled attention to the end of their lives,
whatever their disease or disability. [54, p. 12]
Leadership presents a problem in palliative care where a
particular health organisation may be served by a
variety of agencies independent of each other. In the
United Kingdom, for example, the integration and
https://t.me/med1917
Hospital Palliative Care 63
the skills of each member of the team is appropriately
brought to bear on the care of patients. Similarly, there may
be differing points at which the differing skillsets may be
required – diagnostic or prescribing at one stage in a
patient’s illness, discharge planning or rehabilitation at
others, but it is unlikely that the experiences of a particular
patient with palliative care needs throughout their hospital
stay will not need the input of more than one member at
some stage.
The second important, and indeed, increasingly important
facet of multidisciplinary work relates to palliative care input
to wider multidisciplinary team working. For a range of
chronic conditions, initially in the case of cancers and now
increasingly in non-malignant disease, management
decisions are taken collectively by properly constituted
MDTs. Multidisciplinary teams in cancer have certainly
demonstrated better clinical and process outcomes for cancer
patients and represent an attempt at holistic care for patients,
in which palliative care has a key role to play ensuring effec-
tive communication between team and patient [61].
The Future
Palliative care professionals more than most, understand
the inherent difficulties in predicting the future. It is diffi-
cult enough on the level of an individual patient – how
much more difficult is it to predict the future of health care
and society at large. Changes within health care have been
rapid and unpredictable. Palliative care has been remark-
ably adaptable in its ability to adjust to its application from
its origins in hospices to its work across community and
hospital settings. As with any human endeavour, palliative
care has a patchwork of successes and failures. The spec-
tacular rise and fall of the Liverpool Care Pathway is a case
in point [62]. The conjunction of ethical concerns met a
perfect storm of press interest and political zeitgeist which
resulted in perhaps a chastening downfall which after 50
years of success gave palliative care its first large-scale
hubristic reverse [63].
The fear of setbacks should not deter innovation in health
care. The development of new services and treatments is
hardly a smooth succession of unerring success. The
constant creative tension between maintaining underlying
clinical and ethical principles and the vision of improving
the lot of patients with end-stage incurable disease is chal-
lenging, and unless humans become immortal, these we will
have with us always. What our patients die of or with, will
however change, and palliative care professionals will have
to adjust themselves to differing disease trajectories and
symptoms clusters, to differing treatments with differing
adverse effects and differing patient, family, and professional
It is important however, to bear in mind, despite attempts
to make the measurable important (and indeed the impor-
tant measurable), it is evident that palliative care teams are
an essential part of hospital care and will be an integral part
of that care as long as patients die in hospital. There are
evidently clear clinical elements to care that palliative care
teams are demonstrably able to positively impact. The
concentration on effectiveness should move away from a
need to justify the presence of palliative care teams in
hospital towards demonstrating particular, well-defined
impacts where trial methodology can be used to provide
evidence for service funders and providers to develop
hospital palliative care teams. The presence of a palliative
care team as a resource for other teams in multidisciplinary
work, education, and training (placements and formal
teaching for example) cannot be overemphasised.
Multidisciplinary Team Work
In the context of hospital palliative care team, multidisci-
plinary team (MDT) work has two aspects that deserve
consideration. It should go without saying that the hospital
palliative care team itself should be multidisciplinary. The
history of palliative care is that of a multidisciplinary
endeavour and it is hard to conceive of an arrangement
whereby a HSPCT could successfully consist of anything
other than members from diverse range of professions.
Quite what the optimal composition of a HSPCT should
be is a matter of debate [58]. The constituents of most
teams will reflect historic funding arrangements whereby
funding has allowed the staffing of members initially –
often in the form of sessional input from hospices or
pump-priming from charitable foundations in order to
make a case of more permanent funding. The growth of
teams tends to have been organic and opportunistic (mak-
ing use of funding growth, in the UK, for example, as part
of the NHS Cancer Plan of 2000) [59]. There have been
explicit attempts, however, to give some shape to the
constituent members of palliative care teams:
The multi-disciplinary palliative care team should contain
trained specialist medical and nursing staff, social workers,
physiotherapists, occupational therapists and should relate to
other disciplines such as dietetics and chaplaincy [60, p. 16].
This list is not exhaustive (and does not, disappointingly,
include specialist pharmacist input) but does at least give
some indication of the range of skills required, particularly
in large hospitals to meet the palliative care needs in a
holistic way. Each member of the team should ideally input
regularly in MDT meetings to ensure care is optimised and
https://t.me/med1917
64 Chapter 5
palliative care in US hospitals: a status report. Journal of
Palliative Medicine 19 (1): 8–15.
10. Temel, J.S., Greer, J.A., Muzikansky, A., Gallagher, E.R.,
Admane, S., Jackson, V.A., Dahlin, C.M., Blinderman, C.D.,
Jacobsen, J., Pirl, W.F., and Billings, J.A. (2010 August 19).
Early palliative care for patients with metastatic non–small-
cell lung cancer. New England Journal of Medicine 363 (8):
733–742.
11.
Higginson, I.J. and Evans, C.J. (2010 September 1). What is
the evidence that palliative care teams improve outcomes for
cancer patients and their families?The Cancer Journal 16 (5):
423–435.
12.
Connor, S.R., Pyenson, B., Fitch, K., Spence, C., and Iwasaki,
K. (2007 March 1). Comparing hospice and nonhospice
patient survival among patients who die within a three-year
window. Journal of Pain and Symptom Management 33 (3):
238–246.
13.
Morrison, R.S., Dietrich, J., Ladwig, S., Quill, T., Sacco, J.,
Tangeman, J., and Meier, D.E. (2011 March 1). Palliative care
consultation teams cut hospital costs for Medicaid
beneficiaries. Health Affairs 30 (3): 454–463.
14.
Hui, D., Elsayem, A., DeLa Cruz, M., Berger, A., Zhukovsky,
D.S., Palla, S., Evans, A., Fadul, N., Palmer, J.L., and Bruera, E.
(2010 March 17). Availability and integration of palliative
care at US cancer centers. JAMA 303 (11): 1054–1061.
15.
Hawley, P. (2017). Barriers to access to palliative care.
Palliative Care: Research and Treatment 10: 1–16.
16. Gardiner, C., Cobb, M., Gott, M., and Ingleton, C. (2011
March 1). Barriers to providing palliative care for older
people in acute hospitals. Age and Ageing 40 (2): 233–238.
17. Quill, T.E. and Abernethy, A.P. (2013 March 28). Generalist
plus specialist palliative care—creating a more sustainable
model. New England Journal of Medicine 368 (13):
1173–1175.
18.
Katzenbach, J.R. and Smith, D.K. (2005 July 1). The discipline
of teams. Harvard Business Review 83 (7): 162.
19. Cooper, R.J. (2009 November 1). Solo doctors and ethical
isolation. Journal of Medical Ethics 35 (11): 692–695.
20. Bush, J. (2020 April). Engaging the solo practitioner to reduce
errors and burnout. Journal of Medical Regulation 106 (1):
16–21.
21.
Fernando, G.V. and Hughes, S. (2019 September 2). Team
approaches in palliative care: a review of the literature.
International Journal of Palliative Nursing 25 (9): 444–451.
22. Bates, T., Hoy, A.M., Clarke, D.G., and Laird, P.P. (1981). The
St. Thomas’ Hospital terminal care support team—a new
concept of hospice care. Lancet 2: 1201–1203.
23. Gannon, C. (1995 May 27). Palliative care in terminal cardiac
failure. Hospices cannot fulfil such a vast and diverse role.
British Medical Journal 310 (6991): 1410.
24.
Davidson, P.M., Paull, G., Introna, K., Cockburn, J., Davis,
J.M., Rees, D., Gorman, D., Magann, L., Lafferty, M., and
Dracup, K. (2004 January 1). Integrated, collaborative
palliative care in heart failure: the St. George Heart Failure
expectations. The hospital of the future may itself be very
different from that just now and we must adapt similarly to
that change, as we must to perhaps to the changing roles of
doctors, nurses, and other health professionals with regard
to training and professional responsibilities.
While it is clear that no professional is clairvoyant and
able to see into the future, it is incumbent on hospital-
based teams to have a clear awareness of the past and a
keen eye upon the current changes in the nature of diseases
and their treatment, our patients’ experiences of those dis-
eases and their families’ needs. It requires an active research
community to work in areas of symptom control and the
qualitative aspects of patients’ experience to illuminate
future care and for palliative care organisations to collabo-
rate with public health bodies and health planners to plot
the future as far as this is possible.
We owe the dying and those facing incurable progres-
sive disease no less.
Acknowledgement
Many thanks to Ruairidh Keeley for producing Figures 1,
2, and 4.
References
1. World Health Organization. National cancer control
programmes: policies and managerial guidelines, 2nd ed.
Geneva: World Health Organization, 2002.
2. Hinton, J.M. (1963 January 1). The physical and mental
distress of the dying. Quarterly Journal of Medicine 32 (1):
1–21.
3. Exton-Smith, A.N. (1961 August 5). Terminal illness in the
aged. The Lancet 278 (7197): 305–308.
4.
Clark, D. (2007 May 1). From margins to centre: a review of
the history of palliative care in cancer. The Lancet Oncology 8
(5): 430–438.
5. Mount, B.M. (1976 July 17). The problem of caring for the
dying in a general hospital; the palliative care unit as a possible
solution. Canadian Medical Association Journal 115 (2): 119.
6.
Dunlop, R.J. and Hockley, J.M. (1990). Hospital-Based
Palliative Care Teams. Oxford: Oxford University Press.
7. Douglas, C. (1992 February 29). For all the saints. British
Medical Journal 304 (6826): 579–580.
8. Beszterczey, A. (1977 November). Staff Stress on a newly-
developed palliative care service: the psychiatrist’s role.
Canadian Psychiatric Association Journal 22 (7): 347–354.
9. Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier,
D.E., and Morrison, R.S. (2016 January 1). The growth of
https://t.me/med1917
Hospital Palliative Care 65
39. NICE. (2002). Principles for Best Practice in Clinical Audit.
Abingdon: Radcliffe Medical Press.
40. Jabbal, J. (2017). Embedding a Culture of Quality Improvement.
London: King’s Fund.
41. Hearn, J. and Higginson, I.J. (1999 December 1). Development
and validation of a core outcome measure for palliative care:
the palliative care outcome scale. Palliative Care Core Audit
Project Advisory Group. BMJ Quality & Safety 8 (4):
219–227.
42.
Edmonds, P.M., Stuttaford, J.M., Penny, J., Lynch, A.M., and
Chamberlain, J. (1998 July). Do hospital palliative care teams
improve symptom control? Use of a modified STAS as an
evaluation tool. Palliative Medicine 12 (5): 345–351.
43.
Berk, M., Callaly, T., and Hyland, M. (2003 May). The
evolution of clinical audit as a tool for quality improvement.
Journal of Evaluation in Clinical Practice 9 (2): 251–257.
44. Benitez-Rosario, M.A., Castillo-Padrós, M., Garrido-Bernet,
B., and Ascanio-León, B. (2012 October 1). Quality of care in
palliative sedation: audit and compliance monitoring of a
clinical protocol. Journal of Pain and Symptom Management
44 (4): 532–541.
45.
Tsai, L.Y., Li, I.F., Liu, C.P., Su, W.H., and Change, T.Y. (2008
September). Application of quality audit tools to evaluate care
quality received by terminal cancer patients admitted to a
palliative care unit. Supportive Care in Cancer 16 (9):
1067–1074.
46.
Morita, T., Fujimoto, K., Namba, M., Sasaki, N., Ito, T.,
Yamada, C., Ohba, A., Hiroyoshi, M., Niwa, H., Yamada,
T., and Noda, T. (2008 January). Palliative care needs of
cancer outpatients receiving chemotherapy: an audit of a
clinical screening project. Supportive Care in Cancer 16
(1): 101–107.
47.
Crombie, I.K. and Davies, H.T. (1993). Missing link in the
audit cycle. Quality in Health Care 2 (1): 47.
48. Selman, L. and Harding, R. (2010 January). How can we improve
outcomes for patients and families under palliative care?
Implementing clinical audit for quality improvement in resource
limited settings. Indian Journal of Palliative Care 16 (1): 8.
49. Watt, C.L., Downar, J., Ahmedzai, S., Baldwin, D., Currow, D.,
and Clark, D. (1993). Whither the hospices? In: The Future
for Palliative Care: Issues in Policy and Practice (ed. D. Clark),
167–177. Milton Keynes, Bucks, England: The Open
University Press.
50. Vanbutsele, G., Pardon, K., Van Belle, S., Surmont, V., DeLaat,
M., Colman, R., Eecloo, K., Cocquyt, V., Geboes, K., and
Deliens, L. (2018 March 1). Effect of early and systematic
integration of palliative care in patients with advanced
cancer: a randomised controlled trial. The Lancet Oncology
19 (3): 394–404.
51. Foley, K.M. (2005 November 1). The past and future of
palliative care. The Hastings Center Report 35 (6): S42–S46.
52. Addington‐Hall, J. (2002 September). Research sensitivities
to palliative care patients. European Journal of Cancer Care 11
(3): 220–224.
Service experience 1999–2002. Journal of Cardiovascular
Nursing 19 (1): 68–75.
25.
Rocker, G.M., Simpson, A.C., and Horton, R. (2015
September 1). Palliative care in advanced lung disease: the
challenge of integrating palliation into everyday care. Chest
148 (3): 801–809.
26.
Hepgul, N., Gao, W., Evans, C.J., Jackson, D., vanVliet, L.M.,
Byrne, A., Crosby, V., Groves, K.E., Lindsay, F., and Higginson,
I.J. (2018 March 1). Integrating palliative care into neurology
services: what do the professionals say?BMJ Supportive &
Palliative Care 8 (1): 41–44.
27.
Traue, D.C. and Ross, J.R. (2005 November). Palliative care in
non-malignant diseases. Journal of the Royal Society of
Medicine 98 (11): 503–506.
28. Fallon, M. and Foley, P. (2012). Rising to the challenge of
palliative care for non-malignant disease. Palliative Medicine
26 (2): 99–100.
29. Johnson, M. and Fallon, M. (2013). Just good care? The
palliative care of those with non-malignant disease. Palliative
Medicine 27 (9): 803–804.
30. World Health Organization. (1946 June 19–22). Preamble to
the Constitution of the World Health Organization as Adopted
by the International Health Conference. New York: World
Health Organization.
31.
Clark, D. (1999 September 1). “Total pain,” disciplinary
power and the body in the work of Cicely Saunders, 1958–
1967. Social Science & Medicine 49 (6): 727–736.
32. Aslakson, R., Dy, S.M., Wilson, R.F. et al. (2017). Assessment
Tools for Palliative Care. Agency for Healthcare Research and
Quality (US). Rockville, MD: PMID: 28837305.
33. Ahmed, N., Ahmedzai, S.H., Collins, K., and Noble, B. (2014
September 1). Holistic assessment of supportive and palliative
care needs: the evidence for routine systematic questioning.
BMJ Supportive & Palliative Care 4 (3): 238–246.
34.
The Gold Standards Framework. A programme for community
palliative care. https://goldstandardsframework.org.uk
(accessed 5 April 2021).
35.
Thomas, K. (2003). Caring for the Dying at Home: Companions
on the Journey. Abingdon, Oxon: Radcliffe Medical Press.
36. Hoare, S., Morris, Z.S., Kelly, M.P., Kuhn, I., and Barclay, S.
(2015 November 10). Do patients want to die at home? A
systematic review of the UK literature, focused on missing
preferences for place of death. PloS One 10 (11): e0142723.
37.
Gomes, B., Higginson, I.J., Calanzani, N., Cohen, J., Deliens,
L., Daveson, B.A., Bechinger-English, D., Bausewein, C.,
Ferreira, P.L., Toscani, F., and Meñaca, A. (2012 August 1).
Preferences for place of death if faced with advanced cancer:
a population survey in England, Flanders, Germany, Italy, the
Netherlands, Portugal and Spain. Annals of Oncology 23 (8):
2006–2015.
38. Dunlop, R.J., Davies, R.J., and Hockley, J.M. (1989 July).
Preferred versus actual place of death: a hospital palliative
care support team experience. Palliative Medicine 3 (3):
197–201.
https://t.me/med1917
66 Chapter 5
58. Kousaie, K. and von Gunten, C.F. (2017). Models of palliative
care team composition: nurse practitioneronlyversus
interdisciplinary teams that include specialist physicians.
Journal of Palliative Medicine. Dec 1; 20 (12):1313-.
59.
Department of Health. (2000). The NHS Cancer Plan: A Plan for
Investment, a Plan for Reform. London: Department of Health.
60. Department of Health. (1995). A Report by the Expert
Advisory Group on Cancer to the Chief Medical Officers of
England and Wales. A Policy Framework for Commissioning
Cancer Services – The Calman–Hine Report. London:
Department of Health.
61.
Prades, J., Remue, E., Van Hoof, E., and Borras, J.M. (2015
April 1). Is it worth reorganising cancer services on the basis
of multidisciplinary teams (MDTs)? A systematic review of
the objectives and organisation of MDTs and their impact on
patient outcomes. Health Policy 119 (4): 464–474.
62.
Neuberger, J., Guthrie, C., and Aaronovitch, D. (2013). More
Care, Less Pathway: A Review of the Liverpool Care Pathway.
London: Department of Health.
63.
Seymour, J. and Clark, D. (2018). The liverpool care pathway
for the dying patient: a critical analysis of its rise, demise and
legacy in England. Wellcome Open Research 3: 15.
53.
Kaasa, S., Hjermstad, M.J., and Loge, J.H. (2006 December).
Methodological and structural challenges in palliative care
research: how have we fared in the last decades?Palliative
Medicine 20 (8): 727–734.
54.
Saunders, C. (2000 August 1). The evolution of palliative care.
Patient Education and Counseling 41 (1): 7–13.
55. Bajwah, S., Oluyase, A.O., Yi, D., Gao, W., Evans, C.J., Grande,
G., Todd, C., Costantini, M., Murtagh, F.E., and Higginson,
I.J. (2020). The effectiveness and cost‐effectiveness of
hospital‐based specialist palliative care for adults with
advanced illness and their caregivers. Cochrane Database of
Systematic Reviews (9): CD012780.
56.
Oluyase, A.O., Higginson, I.J., Yi, D., Gao, W., Evans, C.J.,
Grande, G., et al. (2021). Hospital-based specialist palliative
care compared with usual care for adults with advanced
illness and their caregivers: a systematic review. Health
Services and Delivery Research 9 (12).
57.
DePalma, R., Fortuna, D., Hegarty, S.E., Louis, D.Z., Melotti,
R.M., and Moro, M.L. (2018 September). Effectiveness of
palliative care services: a population-based study of end-of-
life care for cancer patients. Palliative Medicine 32 (8):
1344–1352.
https://t.me/med1917
Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.
© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
67
6
Ethics in Palliative Care Practice
Derek Willis
I cannot teach anybody anything, I can only make
them think
Socrates
Introduction
One chapter in a book cannot hope to cover all that ethics
is and the application of ethics to the practice of palliative
care. All it can try to do is raise some questions, challenge
you to think, and point the reader in the direction of
sources and opinions that may be helpful or interesting for
further reading. I hope that what is in this chapter will
challenge you to grapple more with ethics in your own
practice and encourage you to explore this world in more
depth.
Ethics and ethical discussions have grown in both their
volume and complexity over the past 10 years, particularly
within health care. To some this branch of philosophy is an
interesting subject—but, in their opinion, it is a diversion
away from the “proper” science-based aspects of medicine,
which have a solid evidence base. When one considers
what medicine involves, balancing of harms and benefits,
societies and the distribution of resources in those soci-
eties, how to conduct useful research, for example, it seems
clear that ethics is not an “optional extra,” but something
that all practitioners should have some knowledge about.
In fact, it could be argued, that we are all ethicists and phi-
losophers at heart anyway—we just do not recognise that
we do this as part of living generally and health care prac-
tice specifically. This is important to state at the outset, as
sometimes it can seem that palliative care has a monopoly
on ethical issues. There is no getting away from the fact
that, given the type of patients requiring palliative care and
stage of illness that they are at, that there are ethical issues
that are especially relevant to the specialty. Also, the prac-
tice of palliative care recognises that the physical is not the
only aspect that is important regarding patient care.
Holistic care, which is at the heart of palliative care, would
necessarily include respecting that person as a moral agent
and allowing them to express their moral choices i.e. treat-
ing them ethically and allowing them to be ethical in their
behaviour.
Ethics is generally split into three areas of study—
applied ethics, moral philosophy, and metaethics. In this
chapter we will look at some aspects of the first two areas.
I will define the area of metaethics and have provided some
further reading at the end of the chapter if the reader is
interested. While a fascinating subject, metaethics is
beyond the scope of this chapter to cover in detail.
The difference between these branches of ethics can be
illustrated by comparing it to a game—such as a game of
rugby. Applied ethics are what we define as ethically right
with regards to a specific subject, e.g., is euthanasia mor-
ally justifiable? To use our rugby analogy,
1
it describes
what happened in a particular game of rugby—did the
players play by the rules and was it a “good game” of
rugby? So, in the clinical example of euthanasia—do I
think that this is a particular harm or inherent good such
that it should be available for people? Moral philosophy is
describing what the rules are that we use to reach decision
in applied ethics—in our rugby game example it is what
the rules of scrums, conversions, and tries are. To return
1
This helpful analogy is used in the helpful book Metaethics: An Introduction by Andrew Fisher [1]. I am not sure if this is his
metaphor/idea, but this is where this author first saw it.
https://t.me/med1917
Соседние файлы в папке Библиотека им академика М.И. Перельмана