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Barriers to providing palliative care for older people in acute hospitals

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Abstract

the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hospitals. to explore the perspectives of health professionals regarding barriers to optimal palliative care for older people in acute hospitals. fifty-eight health professionals participated in eight focus groups and four semi-structured interviews. participants identified various barriers to palliative care provision for older people, including attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Participants also reported differing understandings of whose responsibility it was to provide palliative care for older people, and uncertainly over the roles of specialist and generalist palliative care providers in acute hospitals. numerous barriers exist to the provision of high-quality palliative care for older people within acute hospital settings. Additional research is now required to further explore age-related issues contributing to poor access to palliative care.
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Received 1 June 2010; accepted in revised form
21 October 2010
Age and Ageing 2011; 40: 233238
doi: 10.1093/ageing/afq172 © The Author 2011. Published by Oxford University Press on behalf of the British Geriatrics Society.
All rights reserved. For Permissions, please email: journals.permissions@oup.com
Published electronically 20 January 2011
Barriers to providing palliative care for older
people in acute hospitals
CLARE GARDINER1,MARK COBB3,MERRYN GOTT2,CHRISTINE INGLETON1
1
University of Sheffield School of Nursing & Midwifery, Sheffield, UK
2
University of Auckland School of Nursing, Auckland, New Zealand
3
Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
Address correspondence to: C. Gardiner. Tel: (+44) 114 262 0174 ext 31. Email: c.gardiner@sheffield.ac.uk
Abstract
Background: the need for access to high-quality palliative care at the end of life is becoming of increasing
public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely
to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute
hospitals.
Objective: to explore the perspectives of health professionals regarding barriers to optimal palliative care for older people
in acute hospitals.
Methods: fty-eight health professionals participated in eight focus groups and four semi-structured interviews.
Results: participants identied various barriers to palliative care provision for older people, including attitudinal differences
to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Participants also
reported differing understandings of whose responsibility it was to provide palliative care for older people, and uncertainly
over the roles of specialist and generalist palliative care providers in acute hospitals.
Conclusions: numerous barriers exist to the provision of high-quality palliative care for older people within acute
hospital settings. Additional research is now required to further explore age-related issues contributing to poor access to
palliative care.
Keywords: palliative care, hospitals, older people, elderly
Background
Demographic trends coupled with a rise in long-term
health conditions and chronic diseases mean that the core
population of patients requiring palliative care is ageing [1].
This is a particular challenge for palliative care whose
demographic prole has tended to be younger and whose
historic disease focus has predominantly been cancer.
Ensuring that palliative care becomes more accessible to
older people and their particular complex and co-existing
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needs has been identied as an international public health
priority [2]. The care provided to people with advanced
progressive and incurable illness is also increasingly the
focus of debate regarding terminology [3]. In the UK,
recent policy has seen a shift that has attempted to separate
the term palliative care from dying [4]. Other countries
including the USA and Australia have also moved away
from associating palliative care with dying, particularly for
older people [5]. These denitional issues add to the com-
plexities of both researching and implementing good care
for the growing numbers of older people with advanced
progressive illness.
In 2008 in excess of a quarter million (56%) of all
deaths in England and Wales occurred in NHS hospitals [6]
and adults aged 7584 years had the highest hospital death
rates [4]. Palliative care provision in acute hospitals in the
UK has been identied as an area of particular policy pri-
ority in light of a recent report identifying that a proportion
of patients dying in hospitals, the majority of whom are
older people, experience very poor care [7]. A survey of
complaints within the NHS revealed that half of complaints
made between 2004 and 2006 related to care given in acute
hospitals, and of these 54% related in some way to
end-of-life care [8].
The End of Life Care Strategy for England has high-
lighted the delivery of high-quality end-of-life care in
acute hospitals as a particular area of priority [4], acknowl-
edging that numbers of people dying in acute hospitals
are increasing [9]. Whilst for many patients home is the
preferred choice for end-of-life care and death [10], for
some patients hospital is the preferred setting. Older
people in particular have identied signicant barriers to
dying at home and often report preferences for care in
hospital, feeling reassured by the presence of medical
expertise and technologies [11]. There are currently 314
hospital-based specialist palliative care (SPC) services in
the UK; these services comprise professionals with
specialist training in palliative care whose remit is to care
for patients who require continuous or high levels of
support [12]. However, the majority of older patients
dying in hospital will receive palliative care from general-
istproviders, i.e. professionals working within specialties
such as Geriatric Medicine who will not have undertaken
specialist training in palliative care and who provide this
care as a routine part of their usualcare [13,14].
Whilst there is continuing evidence of inequalities in
referral to and use of SPC services for older people [15],
reasons for this are unclear and recent evidence has
suggested that for patients within the specialist cancer care
system, age is not associated with access to SPC [16,17].
Barriers to providing palliative care in acute hospitals are
not well understood and there is a paucity of published lit-
erature in this area, particularly in relation to older people.
This study contributes to the limited UK evidence base by
exploring the perspectives of health professionals regarding
barriers to optimal palliative care for older people in acute
hospitals.
Methods
Given the exploratory nature of the enquiry and the limited
existing evidence base, a qualitative study design was
adopted. Four focus groups were held at general practices
(n= 28), and four focus groups (n= 26) and four inter-
views (n=4)
1
were held in two acute hospitals and two
hospices in UK cities selected to maximise socio-
demographic diversity of patient populations (Shefeld and
Lancaster). The acute hospitals were large city hospitals
both providing geriatric medicine services (one of the hos-
pitals housed an SPC inpatient unit, the other had no inpa-
tient SPC provision but had access to outreach services).
Participants from a range of disciplinary backgrounds and
care settings were selected in order to achieve the
maximum possible variation of experience and opinion
(Table 1). The focus group and interview guide was devel-
oped following a review of the literature and relevant policy
(Table 2). Focus groups and interviews were conducted and
led by CG. The study received ethical approval from the
Shefeld Research Ethics Committee and all participants
gave written informed consent.
Analysis
Focus group and interview transcripts were recorded and
transcribed verbatim, eld notes were included where
appropriate. To address issues of rigour and trustworthi-
ness, transcripts were read by three of the authors (C.G.,
M.G., C.I.) and core themes were identied. A coding fra-
mework was developed by consensus and was grounded in
the data rather than decided a priori. Sub-themes were then
identied with the assistance of the data analysis pro-
gramme NVivo 8. The themes and sub-themes discussed
in this article were then further analysed by C.G. Direct
quotations have been selected to illustrate the issues raised
by participants and they are indicative both of typical
responses and of the diversity of views obtained.
Findings
Whilst participants agreed that high numbers of predomi-
nantly older inpatients in acute hospital settings have pallia-
tive care needs, understandings regarding whose
responsibility it was to address those palliative care needs
differed. Participants reported that amongst some health
professionals, palliative care was seen as a service to be
delivered by specialists and was not seen to be in the remit
of those providing acute care in hospitals.
Clinical nurse specialist:I think theres some real atti-
tudes within medical teams or surgical teams as well,
1
Individual interviews were held in cases where participants were unable for
practical reasons to attend a focus group; the same question guide was used
for all focus groups and interviews.
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that its not really their business to deal with that to
deal with palliative care.[focus group 5]
The prevailing view amongst geriatricians was that the nature
of their speciality gave them some experience in the care of
dying patients. However, they were uncertain as to whether or
not to claim expertise in this area and did not view palliative
care as a core part of their role, there was also a tendency to
equate palliative care with the dying patient.
Registrar in geriatrics:surely we have some specialism in
dying, in older people dying? We have a bit of experi-
ence of that? Again where do you t that into your
programme...to do it justice and do it properly[focus
group 4]
Other participants, particularly those specialising in pallia-
tive care, believed that basic palliative care could, and
should, be provided by all health professionals involved in
caring for patients reaching the end of life, as an important
component of routine care.
Consultant in Palliative Medicine:palliative care is not
only the business of specialist teams...everyone should
be able to deliver the basic, generic palliative care...you
will be facing death and dying whatever speciality you
choose, so those skills have to be had by everyone
and not just by the specialists[focus group 8].
However, signicant barriers were identied to generalists
providing palliative care and instigating referrals to SPC
teams. Whilst some were common to patients of all ages,
the majority had particular resonance for older patients.
Barriers to ensuring appropriate palliative
care provision for older patients
Several participants acknowledged that an older patient with
palliative care needs elicited a different response from them
than a younger patient with comparable needs, and that this
had implications for clinical practice. For example, a term-
inal diagnosis in an older person was seen as less shocking
and more expected than in a younger person.
Consultant Geriatrician:I think its possibly the case
that its more acceptable in older people its the
good innings argument...you know theyve had their
innings, theyre old so theyve perhaps got less to live
for[interview 3]
Limited social and family support was also identied as
contributing to a lack of palliative care provision for older
people. Younger people were seen to have more compre-
hensive support networks, as well as often having an advo-
cate who could demand best quality care on their behalf.
The role that family and support networks could play in
facilitating access to services such as SPC was seen as com-
pounding the lack of psychosocial support available to
older people, particularly those who live alone.
Hospice Nurse:Theres often a lot more support for
younger people as far as families and people go. With
younger people nearly always family members, friends,
neighbours will rally round. Often with old people
theres no one.[focus group 8]
Lack of resources, particularly for people
dying from conditions other than cancer
Both generalist and SPC provision within acute hospitals
were identied as particularly decient for the population
of predominantly older people dying from conditions other
than cancer. It was reported that patients with non-
malignant disease were less likely to be referred to SPC
Table 1. Descriptive information for focus group
participants (n= 58)
Male 12 (20.7%)
Mean age 46.3 years (SD = 9.92)
Age range 2869 years
Job title
Consultant 4 (6.9%)
Junior doctor 9 (15.5%)
General practitioner 6 (10.3%)
Practice nurse 4 (6.9%)
Clinical nurse specialist 11 (19.0%)
Other nurse 19 (32.7%)
Allied health professional 5 (8.6%)
Place of work
Acute hospital 10 (17.2%)
GP practice 28 (48.3%)
Hospice 15 (25.9%)
SPC unit 5 (8.6%)
Table 2. Interview and focus group question guide
Understanding and experience of palliative care and end of life care
What do you understand by the terms palliative care and end-of-life care?
Are you regularly involved in providing palliative and end-of-life care?
Do you think many inpatients in acute hospitals have palliative and
end-of-life care needs?
Management and organisation of care
Thinking about the management and organisation of care and the way
palliative care is currently managed in acute hospitals: what are the main
barriers and facilitators to providing palliative care in acute hospitals?
Do you think palliative care management is approached differently in older
people when compared with younger people?
Transitions and communication
Are there issues surrounding the transmission of information about patients
with palliative care needs from the acute hospital into the community?
What are your thoughts on how transitions to palliative care management
within acute hospitals are currently managed?
What sort of decisions made in acute hospitals indicates that a palliative
care approach to patient management has been adopted?
In your experience is a palliative care approach adopted alongside active
curative treatment: (a) within primary care; (b) within acute hospitals?
Is prognosis routinely discussed with patients in acute hospitals? Do you
feel it ought to be?
Are decisions about adopting a palliative approach to patient management
disclosed to patients and/or their families?
What would trigger such discussions? Who would be involved in these
discussions?
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services, in part due to the historical link between cancer
and palliative care.
Practice nurse 1:They dont admit them to the palliative
care unit do they the COPD and heart failure?
Practice nurse 2:They go on to the general ward
[focus group 3]
Generalist palliative care provision within acute hospitals
was seen as being particularly susceptible to resource
restrictions. It was acknowledged that inadequate stafng
levels and increased time pressures on generalists impacted
on the ability of staff to provide good palliative care.
Psychosocial palliative care in particular was rarely priori-
tised under these circumstances.
Hospice Social Worker:The stafng levels there [hospi-
tal] are often so poor that it isnt a question of not
wanting to do it, its not being able to do it. Theyre
not even able to satisfy the basic requirements, much
less go in and listen to people in the way that theyd
like to.[focus group 5]
A focus on acute or interventionist care
Participants reported that both generalist palliative care, and
timely referral to SPC, could be compromised by an inap-
propriate focus on interventionist care with a curative
intent. This was described in some instances as a reluctance
of doctors to let patients die. The widespread public
expectation that hospital is a place where ill people go to
get betterwas cited as a further justication for the focus
on acute care, with physicians not wanting to seem as if
they had given upon patients.
Consultant Geriatrician:I think some doctors nd it dif-
cult to let go, some doctors nd it uncomfortable to
admit that the patient is going to die, they feel that
they should carry on, doing all they can for them in
terms of investigations and treatment[interview 3]
Discussion
This qualitative study conrms that signicant barriers exist
to the provision of optimum palliative care for older people
within acute hospital settings. The nding that older age
can act as a barrier to accessing SPC resonates with pre-
vious research ndings [16]. Despite substantial evidence
suggesting inequalities in access to SPC for older patients,
there is little consensus as to why this should be the case,
and in addition whether inequality in access to care necess-
arily implies inequity in care [16,18]. Indeed, a recent study
exploring equity of use of SPC in lung cancer clinic patients
found that age was not associated with the receipt of SPC
services, and referral was based on the need [17]. However,
health professionals in our study reported that they often
believed older people to be less requiring of palliative care
than younger people, as a consequence of death being
more expected in an older person, and the perception that
older people nd it easier to come to terms with a terminal
diagnosis. It seems that, for a proportion of health pro-
fessionals, the belief that older people have fewer require-
ments for SPC may be a factor affecting referral patterns
and leading to reduced utilisation of specialist care.
Provision of good palliative care for older people is also
crucially mediated by a situation where the role of the rst line
of health professionals for older people, specically geriatri-
cians, is ill-dened in terms of responsibility for providing pal-
liative care [19]. A further debate surrounds the denitional
and conceptual issues relating to palliative care for older
people. The ndings show that, for generalists in particular,
palliative care is often equated with dying. This conceptual
issue may present a further barrier to optimum care, particu-
larly for patients with non-malignant disease where dying
may not be diagnosed until close to death. At both practice
and policy levels, there is a tendency to compartmentalise
chronic disease management and end-of-life care. This com-
plicates the implementation of continuous palliationfor older
people, as advocated within Geriatric Medicine [20]. Ensuring
both the early introduction of palliative care and continuous
palliation is central to achieving improvements in the
end-of-life experiences of older people. Indeed, overall, there
is an urgent need to clarify the terminology used within pallia-
tive care in order to ensure consistency in clinical practice.
Findings from this study indicate a situation where special-
ist palliative care services are still inextricably linked with
cancer, despite substantial evidence to suggest that patients
with advanced non-malignant disease would benetfromthis
care [21]. Older people are proportionally more likely to die
from conditions other than cancer, and hence are disadvan-
taged in access to SPC by diagnosis [22]. A focus on interven-
tionist care with curative intent was also identied as
contributing to a delay in the implementation of appropriate
palliative care within acute hospitals. This nding has particu-
lar resonance in the context of recent UK guidelines pro-
duced by the General Medical Council regarding Treatment
and Care Towards the End of Life [23]. The guidelines
acknowledge that the most challenging decisions in this area
are generally regarding withdrawing or not starting a treat-
ment when it has the potential to prolong a patientslife.
Findings from this study conrm the difculties faced by
health professionals when making decisions about adopting a
palliative care approach. Evidence has suggested that earlier
integration of palliative care as part of a multidisciplinary
team can facilitate optimum patient care [24]. However, recog-
nition is required, particularly by generalist palliative care pro-
viders within acute hospitals, that a focus on interventionist
care may not always be appropriate for patients with life-
limiting conditions.
Additional research is now required to further explore
the issues identied in this paper. At policy level, there is
much to support palliative care for older people, but there
are clearly challenges in translating this into practice. Part of
the challenge arises because of the traditional palliative care
model and its institutional and cancer focus. Further
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challenges result from the denitional and conceptual
issues surrounding palliative care, and its relevance for
older people. An ageing population with chronic con-
ditions, co-morbidities and complex social circumstances
may be better served by a more dispersed model of pallia-
tive care with case management across the pathway.
Evidence suggests that comprehensive case management
can be effective in the management of chronic long-term
conditions [25]. Further research should seek to explore the
appropriateness of the expansion of these services to incor-
porate palliative care, and facilitate the implementation of
continuous palliation. In addition, culture change is
required in order that ageist attitudes are replaced with
optimal palliative care regardless of age. As evidence
suggests that education alone may be insufcient to effect a
signicant culture change [26], further research should seek
to explore practical and policy-driven initiatives that more
effectively moderate attitudes and behaviour.
Key points
This study conrms that numerous barriers exist to the
provision of optimum palliative care for older people in
acute hospitals.
There is some evidence of ageism in relation to equitable
access to palliative care in hospitals.
Differing understandings were reported regarding the role
of specialist and generalist palliative care for older people.
Conflicts of interest
None declared.
Funding
This study was funded by the National Institute for Health
Research (NIHR), under the Service Delivery and
Organisation (SDO) stream. The views and opinions
expressed herein are those of the authors and do not
necessarily reect those of the Department of Health.
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Received 3 June 2010; accepted in revised form
10 November 2010
Age and Ageing 2011; 40: 238242
doi: 10.1093/ageing/afq179 © The Author 2011. Published by Oxford University Press on behalf of the British Geriatrics Society.
All rights reserved. For Permissions, please email: journals.permissions@oup.com
Published electronically 13 January 2011
Angiotensin-converting enzyme gene and
plasma protein level in Alzheimers disease in
Taiwanese
YUAN-HAN YANG1,2,3,CHIOU-LIAN LAI 1,3,YU-CHANG TYAN4,5,MEI-CHUAN CHOU 3,LING-CHUN WANG6,
MING-HUI YANG7,CHING-KUAN LIU1,2,8
1
Department of and Masters Program in Neurology, Faculty of Medicine, Kaohsiung Medical University, Kaohsiung City,
Taiwan (R.O.C.)
2
Graduate Institute of Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung City, Taiwan (R.O.C.)
3
Department of Neurology, Kaohsiung Medical University Hospital, Kaohsiung City, Taiwan (R.O.C.)
4
National Sun Yat-Sen University-Kaohsiung Medical University Joint Research Center, Kaohsiung City, Taiwan (R.O.C.)
5
Department of Medical Imaging and Radiological Sciences, Kaohsiung Medical University, Kaohsiung City, Taiwan (R.O.C.)
6
Department of Biological Sciences and Technology, National University of Tainan, Tainan City, Taiwan (R.O.C.)
7
Department of Chemistry, National Sun Yat-Sen University, Kaohsiung City, Taiwan (R.O.C.)
8
Department of Neurology, Kaohsiung Municipal Hsiaokang Hospital, Kaohsiung City, Taiwan (R.O.C.)
Address correspondence to: C.-K. Liu. Tel: (+886) 73121101 6760; Fax: (+886) 73162158. Email: ckliu@kmu.edu.tw
Abstract
Background: angiotensin-converting enzyme (ACE) gene insertion/deletion (indel) polymorphism is considered a bio-
marker for Alzheimers disease (AD). However, the associations of ACE gene and protein level to AD are undetermined
among Taiwanese.
Methods: this study investigated 257 Taiwanese cases with AD and 137 ethnically matched controls using ACE gene indel gen-
otype association methods with logistic regression adjusted for other variables. Besides, 65 out of 257 AD patients, 11 with D/
D genotype, 28 with I/I genotype and 26 with I/D genotype were recruited. Their plasma ACE protein levels were measured
by enzyme-linked immuno-sorbent assay and compared for their corresponding ACE gene indel polymorphism.
Results: patients with ACE-I/I homozygote were less likely to be associated with AD, compared with both I/D and D/D
(OR: 0.601; 95% CI: 0.3720.969; P= 0.037), or only I/D genotype (OR: 0.584; 95% CI: 0.3490.976; P= 0.040). There were
signicantly different plasma ACE protein levels among these three different genotype groups (P= 0.023). The I/I genotype
group had signicantly lower ACE plasma levels [114.79 ± 31.32 ng/ml (mean ± SD)], compared with D/D (164.07 ±
86.36 ng/ml; P= 0.010), but not I/D (141.45 ± 51.50 ng/ml; P=0.064).
Conclusion: ACE-I/I homozygote corresponds to lower plasma ACE protein level and it is independently but less likely to be
associated with AD. These ndings signal the importance of ACE indel polymorphisms to their corresponding protein levels
and to AD.
Keywords: angiotensin-converting enzyme, Alzheimers disease, Taiwanese, elderly
238
Y.-H. Yang et al.
by guest on February 15, 2011ageing.oxfordjournals.orgDownloaded from
... However, due to practical and logistical constraints, most hospitals do not have sufficient geriatricians for all older patients and to fill the void, care is often delivered by other specialists (5). Frail or at risk older patients tend to have unpredictable end of life trajectory, and prognosticating death can be difficult for physicians who are not familiar with care of older adults (6). In acute hospitals where the culture leans towards curative intent, this default approach may not be appropriate or indeed achievable in many cases. ...
... This observation suggests a potential lack of awareness of impending mortality and a strong emphasis on cure. In some centres, this could also be attributed to a lack of training or a relative scarcity of resources for palliative care (6,38). ...
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Introduction It is challenging to prognosticate hospitalised older adults. Delayed recognition of end-of-life leads to failure in delivering appropriate palliative care and increases healthcare utilisation. Most mortality prediction tools specific for older adults require additional manual input, resulting in poor uptake. By leveraging on electronic health records, we aim to create an automatable mortality prediction tool for hospitalised older adults. Methods We retrospectively reviewed electronic records of general medicine patients ≥75 years at a tertiary hospital between April–September 2021. Demographics, comorbidities, ICD-codes, age-adjusted Charlson Comorbidity Index (CCI), Hospital Frailty Risk Score, mortality and resource utilization were collected. We defined early deaths, late deaths and survivors as patients who died within 30 days, 1 year, and lived beyond 1 year of admission, respectively. Multivariate logistic regression analyses were adjusted for age, gender, race, frailty, and CCI. The final prediction model was created using a stepwise logistic regression. Results Of 1,224 patients, 168 (13.7%) died early and 370 (30.2%) died late. From adjusted multivariate regression, risk of early death was significantly associated with ≥85 years, intermediate or high frail risk, CCI > 6, cardiovascular risk factors, AMI and pneumonia. For late death, risk factors included ≥85 years, intermediate frail risk, CCI >6, delirium, diabetes, AMI and pneumonia. Our mortality prediction tool which scores 1 point each for age, pneumonia and AMI had an AUC of 0.752 for early death and 0.691 for late death. Conclusion Our mortality prediction model is a proof-of-concept demonstrating the potential for automated medical alerts to guide physicians towards personalised care for hospitalised older adults.
... Low levels of social support, characterized by an absent or less extensive social network, was identified as a barrier to palliative care in a British study involving physicians, nurses, and allied health professionals. 91 In contrast, physicians in an U.S. study assumed that there would be little need for additional support if home care was present, making palliative care consultations less likely. 82 The same study found that consultations were also less likely if the family was absent or less involved in caregiving, as they would not benefit from palliative care. ...
... is the predominant focus on cure by health care professionals. Influenced by factors such as a hospital culture of intensive/aggressive treatment, 95,101,104 a refusal to discuss palliative care,91 or a failure to see the "big picture",95,97 it hindered access to palliative care. In ...
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Background: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs. Aim: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients. Design: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477). Data sources: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed. Results: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Inter-individual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a non-cancer condition or a low symptom burden, the focus on cure in hospitals, non-acceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians’ emotional discomfort and difficult prognostication. Conclusion: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.
... Besides these barriers that are specifically relevant for neurotrauma patients, there are also general barriers for integrating a palliative care approach, such as lack of care coordination, limited time, excessive paperwork, and a lack of knowledge and training about palliative care [14,58,59]. ...
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Traumatic brain injury (TBI) is a significant cause of mortality and morbidity worldwide and many patients with TBI require intensive care unit (ICU) management. When facing a life-threatening illness, such as TBI, a palliative care approach that focuses on noncurative aspects of care should always be considered in the ICU. Research shows that neurosurgical patients in the ICU receive palliative care less frequently than the medical patients in the ICU, which is a missed opportunity for these patients. However, providing appropriate palliative care to neurotrauma patients in an ICU can be difficult, particularly for young adult patients. The patients’ prognoses are often unclear, the likelihood of advance directives is small, and the bereaved families must act as decision-makers. This article highlights the different aspects of the palliative care approach as well as barriers and challenges that accompany the TBI patient population, with a particular focus on young adult patients with TBI and the role of their family members. The article concludes with recommendations for physicians for effective and adequate communication to successfully implement the palliative care approach into standard ICU care and to improve quality of care for patients with TBI and their families.
... In order to safeguard NPCPs from burnout and ensure that patients and families receive quality and dignified care, there needs to be a comprehensive understanding of the specific challenges NPCPs face within the health-care ecosystem, before appropriate interventions can be implemented. While a handful of research has explored the experience of NPCPs caring for end-of-life patients, they have focused preliminarily on nurses and physicians of single medical specialties (Gardiner et al. 2011;Garner et al. 2013;Lai et al. 2018;Oliveira et al. 2016) and lack a comprehensive representation of all major key stakeholders of multiple medical disciplines that play vital roles in supporting the end-of-life journeys of terminally ill patients. Furthermore, most of these studies were conducted in Western societies, with only one article examining the phenomenon in Asia (Lai et al. 2018). ...
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Objectives: The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine. Methods: A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals. Results: Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles. Significance of results: This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.
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This paper explores the critical role of prognostication tools in identifying high-risk hospitalized older adults who may benefit from palliative care. With an ageing population and increasing prevalence of chronic illnesses, the demand for patient-centered healthcare is paramount. The study evaluates three key tools—the Palliative Performance Scale, CARING criteria, and Palliative Care Rapid Emergency Screening tool. Each tool is analyzed for its psychometric properties, advantages, and limitations. Despite their strengths and limitations, these tools emerge as crucial screening tools for identifying older adults at heightened mortality risk within one year of hospital admission. Our paper calls for ongoing research to adapt and validate existing tools, ensuring their applicability across diverse clinical settings and patient populations.
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A common perception about multidisciplinary team (MDT) approach is that it improves the quality of care to hospitalised patients. However, there is paucity of information on the challenges in implementing such an approach in end-of-life care (eolc). Conducted in a multispecialty hospital in Kolkata (India), the present study explores barriers to MDT functioning in the context of ‘eolc’. The study finds the MDT approach fails to live up to its rhetoric. One of the major challenges is a professional boundary that inevitably arises in MDTs. Due to this, specialist physicians fail to overcome disciplinary boundaries to make consensus end-of-life decisions. Moreover, in the physician-dominant medical team, where nurses and other non-clinical caregivers’ roles are marginalised, holistic caregiving is compromised. The hospital environment is also not conducive to multidisciplinary teamwork. Application of a disease-specific treatment protocol in ‘eolc’ cases jeopardises team coordination, adversely affects ‘eolc’ referrals and disrupts care transfers. Dying patients and their families are especially affected by such discordant care. Based on the findings, the study suggests that while team approach is imperative to effective ‘eolc’, there is a need to shift focus from multidisciplinary to transdisciplinary approach to enhance care integration and patient-centric care to terminally ill patients.
Article
Dans un contexte sociétal où, d’une part, on valorise les avancées de la médecine qui donnent accès à une vie de plus en plus longue et où, d’autre part, le mourir dans la dignité est un droit pour toutes les personnes en fin de vie, comment les proches et le personnel soignant s’expliquent-ils les divergences de point de vue au moment de reconnaître l’approche de la mort et de choisir les soins appropriés? À partir d’une étude ethnographique menée au Québec dans deux institutions gériatriques, cet article vise à documenter la façon dont les proches et les soignants mènent la négociation du juste et de l’assez dans une perspective d’accompagnement en fin de vie des personnes du grand âge, où les enjeux deviennent éminemment moraux. Nous y interrogeons les rapports de pouvoir et les représentations de « l’Autre » qui ont une influence lorsque vient le moment d’établir non seulement si un soin de fin de vie est approprié, mais aussi à quel moment il le devient.
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Chapter 2 explained how the practice of reflectivity has been influenced by specific structural condition in a society. As the research on which this monograph has been built took place in the Czech Republic, this chapter aims to explain the specific conditions in which social and healthcare professionals work here and how reflectivity formed part of guiding quality criteria. This will allow the identification of culture- and nation-specific factors that frame personal services. It will also offer comparisons with quality systems for social and health services used in Austria and the UK, countries which have had an influence on the development of social and health services in the Czech Republic. The experience of introducing palliative care units into several Czech general hospitals serves as a case study to show how changes in organisational culture in terms of psychological safety of staff can be effected.
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Aim: To determine the prevalence of palliative care needs in patients in an acute care hospital and to analyze the profile of these patients. Design: We conducted a prospective cross-sectional study in an acute care hospital, in April 2018. The study population consisted of all patients over 18 years of age admitted to hospital wards and intensive care units. Variables were collected on a single day by six micro-teams using the NECPAL CCOMS-ICO© instrument. The descriptive analysis, on patient mortality and length of stay, was performed at a one-month follow-up. Results: We assessed 153 patients, of whom 65 (42.5%) were female, with a mean age of 68.17 ± 17.03 years. A total of 45 patients (29.4%) were found to be SQ+, of which 42 were NECPAL+ (27.5%), with a mean age of 76.64 ± 12.70 years. According to the disease indicators, 33.35% had cancer, 28.6% had heart disease, and 19% had COPD, resulting in a ratio of 1:3 between patients with cancer and non-cancer disease. Half of the inpatients in need of palliative care were in the Internal Medicine Unit. Conclusions: Almost 28% of patients were identified as NECPAL+, most of them not identified as under palliative care in clinical records. Greater awareness and knowledge from healthcare professionals would facilitate the early identification of these patients and avoid overlooking palliative care needs.
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In this paper we review the challenges facing the delivery of research in end-of-life care in the UK and internationally as health policies begin to focus on improving care. These include the problems of terminology in this field of enquiry and the lack of emphasis on clinical studies relating to the medical aspects of end-of-life care, including research into pain and other symptoms. Future priorities are discussed that include the pressing need to build research capacity, making better use of existing intelligence, and to progress in incremental steps as part of sustained programmes of research.
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The equitable provision of care is a core principle of the National Health Service. Previous research has suggested that older cancer patients may be less likely to use specialist palliative care, but such research has been limited by retrospective design and the failure to measure clinical need. The objective of this study was to examine the extent to which the use of specialist palliative care in lung cancer patients varies by age, after accounting for need. A cross-sectional survey of patients and their carers attending four hospital lung cancer clinics in London was conducted between June 2006 and April 2007. Two hundred and fifty-two patients and 137 carers participated in the study. Thirty-nine percent of participants received specialist palliative care. Metastatic disease, global quality of life and the clinic where treatment was provided were associated with use of specialist palliative care. Age, gender, deprivation, living alone, current or most recent line of treatment, number of co-morbidities and carer stress were not associated with receipt of such services. This suggests that, for patients within the specialist cancer care system, access to specialist palliative care is offered on the basis of need.
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Financial constraints and quality requirements demand that interventions selected are most effective. A previous systematic review of the effectiveness of the patient advocacy case management model was not found. The objective of this study was to evaluate the effects of patient advocacy case management on service use and healthcare costs for impaired older people or adults with a chronic somatic disease living in the community. A literature search was conducted in Medline, CINAHL, and Cochrane databases. Included were English-language randomized controlled trials evaluating service use and costs of the patient advocacy case management model for people with a chronic somatic disease or for impaired older people living in the community. Eight relevant studies were identified and included after evaluation of methodological quality. All studies concerned frail or impaired older people, and one study also included people with a somatic chronic disease. In none of the studies was evidence found for clinically relevant increase of service use and costs, whereas in two studies, it was reported that patient advocacy case management led to decreased service use and to savings in costs. Patient advocacy case management does not increase service use and costs and was effective in decreasing service use and costs in two studies. These conclusions are an indication for quality improvement through the combination of its organizational benefits. Therefore, there should be more priority given to further implementation of patient advocacy case management for those with chronic illness and impaired older people. Nursing can play an important role in this development.
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To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. A national consultation and prioritising exercise using a modified form of the nominal group technique. Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist's workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.
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The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71 744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.
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The primary aim of this prospective face-to-face interview survey was to identify the proportion of inpatients at an acute hospital (Royal Hallamshire Hospital, Sheffield, UK) considered to have palliative care needs by medical and nursing staff directly responsible for their care. During the 1-week period of the survey (6-10 September 1999), 452 inpatients were present in the hospital. Nursing staff were interviewed for 99% of patients; medical staff for 81%. Staff interview data were supplemented by case note review. Overall, 23% of the total inpatient population were identified as having palliative care needs and/or being terminally ill by staff and 11% were considered suitable for referral to a specialist palliative care bed. However, there was a low level of concurrence between medical and nursing staff as to which individual patients had palliative care needs (although this increased with perceived increased proximity to death), including which would be suitable for referral to a specialist palliative care bed. A need for further palliative care education for medical and nursing staff working within acute hospital settings was identified to ensure that the best use is made of hospital-based specialist palliative care services.
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What is palliative medicine? In 1987, the Royal College of Physicians recognized palliative medicine as a specialty, defining it as ‘the study and management of patients with far-advanced disease for whom the prognosis is limited and the focus of care is quality of life’. In 1990, the World Health Organization added its definition, ‘the active and total care of a person whose condition is not responsive to curative therapy’. The aim of palliative medicine is to control pain and other physical symptoms, together with integration of psychological, social, spiritual care and support. The ultimate goal is to help patients to achieve their best quality of life. Palliative medicine places emphasis on a holistic approach, offering care and support not just for patients but also for their families. Palliative medicine hence requires an interdisciplinary team approach. With the co-ordinated efforts of all disciplines (such as doctors, nurses, therapists, social workers, clinical psychologists, dieticians, pastoral care workers and volunteers), patients can be supported in living their remaining lives as actively as possible, and families can be assisted in coping with illness, death and bereavement. Palliative care neither intends to postpone death nor does so, but affirms life and regards dying as a normal process. When a patient faces an incurable illness, it is incumbent on the palliative care team to provide the best treatment and care, adding life to days when days cannot be added to life.
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With an aging population globally, and increasing numbers of older patients facing chronic illnesses, better palliative care in old age should be promoted.In this review we will Highlight the pressing need for better palliative care for older people Advocate the concept of palliative care as applied to geriatrics and gerontology Review current end-of-life care for older people with chronic disease, both non-cancer and cancer Discuss the palliative-care approaches to common physical symptoms and psychospiritual distress Highlight advanced care planning and quality-of-life issues
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Few studies have documented the effectiveness of continence promotion programs targeting older incontinent women. We sought to evaluate the impact of an interactive continence workshop on changing participants' attitudes, knowledge and skills in relation to self-managing or seeking care for incontinence. A quasi-experimental prospective cohort study with repeated measures was carried out on a population of 90 incontinent women aged 55-87 participating in a continence promotion workshop. Inclusion criteria were a weekly average of one or more episodes of involuntary urine loss during the preceding 3 months and having never sought help for this problem. Incontinence-related knowledge, attitudes, skills and intentions for seeking care were assessed immediately prior and subsequent to the workshop. Three- and 6-month telephone follow-ups were conducted to determine rates of healthcare seeking and reasons for not seeking care. Improvements in incontinence-related knowledge and attitudes occurred in up to 94% participants. Forty-three percent of the study participants initiated and were satisfied with self-treatment, and an additional 42% consulted a health care professional. Interactive continence workshops promote self-management and consultation seeking among older women with incontinence. Further testing of different strategies for promoting continence awareness needs to occur in larger studies with more sensitive instruments, a control group, and better specification of the goals, process and outcomes of the health promotion activity being tested.
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To explore the attitudes of older people towards home as a place of care when dying. A two-phase qualitative study using focus groups and semi-structured interviews. Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a 'burden' to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of 'strangers' was regarded by some as intrusive and compromising the ideal of 'home'. Older people perceive factors they associate with 'home' as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a 'good death'. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.