African Journal of Emergency Medicine 13 (2023) 339–344

Contents lists available at ScienceDirect

African Journal of Emergency Medicine

journal homepage: www.elsevier.com/locate/afjem

ORIGINAL ARTICLE

Palliative care needs and barriers in an urban Ugandan Emergency

Department: A mixed-methods survey of emergency healthcare workers
and patients
Eleanor Reid a, *, Michael Lukoma b, Dao Ho c, Peace Bagasha d, Mhoira Leng d, e,
Liz Namukwaya d
a
Division of Global Health & International Emergency Medicine, Department of Emergency Medicine, Yale University School of Medicine, New Haven, USA
b
Mulago National Referral Hospital, Makerere University, Kampala, Uganda
c
Memorial Sloane Kettering Hospital, New York, New York, USA
d
Makerere Palliative Care Unit, Mulago Hospital, Makerere University, Kampala, Uganda
e
Cairdeas International Palliative Care Trust, Aberdeen, United Kingdom

A R T I C L E I N F O A B S T R A C T

Keywords: Background: Palliative Care offers patient-centered, symptom-focused relief for patients with incurable disease,
Palliative care and early integration of palliative care ensures quality of life and death while reducing medical impoverishment.
Emergency department The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care.
Uganda
Objective: To evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst
healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda.
Methods: A mixed methods survey of Emergency Department healthcare workers and patients was conducted. A
crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale
(IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive
sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory
approach was used to construct the in depth interview questions, code and analyze qualitative results and
collapse these results into final themes.
Results: The most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14
%). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated
symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or
overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified
by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume
and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4)
Financial constraints as the greatest challenge faced by patients with incurable disease.
Conclusions: We report a high prevalence of unmet palliative care needs among patients in this urban Ugandan
Emergency Department, and important barriers reported by emergency healthcare providers. Identification of
these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as
clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would
improve the care of vulnerable patients, provide healthcare workers with an additional care modality while
likely adding value to the health system.

Introduction is an imperative under Universal Health Coverage [1,2]. Uganda has

been a model for palliative care on the continent of Africa, with a
Palliative care (PC) aims to improve the quality of life for patients number of underpinning drivers of its success including: integration of
with serious health-related suffering and progressive chronic illness and an educational curriculum, training healthcare providers on opioid

* Corresponding author.
E-mail address: Eleanor.reid@yale.edu (E. Reid).

https://doi.org/10.1016/j.afjem.2023.11.005
Received 23 March 2023; Received in revised form 24 October 2023; Accepted 7 November 2023
Available online 25 November 2023
2211-419X/© 2023 The Authors. Published by Elsevier B.V. on behalf of African Federation for Emergency Medicine. This is an open access article under the CC
BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
E. Reid et al. African Journal of Emergency Medicine 13 (2023) 339–344

treatment, extension of opioid prescription privileges to specialist clinics and an ED. The hospital has the different subspecialities of In­
palliative care nurses and clinical officers,and collaboration with ternal Medicine, a Burn Unit and a General Surgery ward. The Kirrudu
community-based healthcare workers for implementation [3,4]. Despite ED sees a volume of approximately 40 patients per day.
this, there are still gaps between the policies that support palliative care
and delivery to the patient: a 2009 needs assessment conducted in at Population
Mulago National Specialized Hospital in Kampala, Uganda found that
46 % of inpatients had life-limiting illness, with a high burden of For the quantitative component, the population were patients with
symptoms (70% reported pain, while 87 % reported weakness) as well as life limiting disease presenting to the Kirrudu ED between October 1 to
social, psychological and spiritual distress. At the time, only 5 % of these December 1, 2021, between 7am to 6pm, Monday through Friday.
patients were accessing palliative care services [5]. Eligible patients were those with chronic life limiting illness (including
There is a great need for palliative care development on the continent cancer, chronic organ failure, chronic infectious diseases e.g., HIV,
of Africa: sub-Saharan Africa has the highest rates of mortality, chronic neurological disease, and genetic disorders e.g., sickle cell
morbidity, and disease burden when compared with other WHO regions anemia) who were deemed by the ED staff team to have PC needs. The
[6].The populations most in need of PC are those with cancer and criteria used are those described by the World Health Organization in
HIV/AIDS, with the rate of cancer in Africa projected to grow more than their definition of palliative care (anyone with serious health related
400 % over the next 50 years [7]. Approximately 10 % of the nearly 3.5 suffering and with a life-limiting illness.23 Those who had altered
million people in Uganda who need palliative care have access to that consciousness and those too ill or breathless to respond to questions
care. This is because only 4.8 % of hospitals offer such services [8]. In were excluded. Regarding qualitative, Kirrudu emergency healthcare
high-income settings, it is known that early integration of palliative care workers of all levels including nurses, junior doctors, clinical officers,
into a patient’s care plan can positively affect the quality of life and and physicians were approached for inclusion in the study.
survival of patients with advanced cancer, reduce medical impoverish­
ment while adding value to healthcare systems [9]. Sample and sampling
However, there is a lack of data about how this integration applies to
patients in sub-Saharan Africa [10–12]. Contemporaneously, there is a For the quantitative component, convenience sampling was
high prevalence of physical, psychosocial, spiritual, and financial employed. Potential patients were identified by the ED team, who then
suffering including catastrophic health expenditure that occur with informed the researchers of potential participants on a daily basis. The
incurable disease, especially for patients in fragile health systems researchers, who are also experienced PC providers, screened the po­
[13–17]. Many of these patients enter the healthcare system through the tential patients. Those whom they confirmed to have a life-limiting
Emergency Department (ED). In addition, accessing medical care for illness and with PC needs were given information and consent forms
management of chronic illnesses is a challenge in many LMICs, and this about the study prior to enrollment. 129 patients were screened, 8 were
is reflected in ED presentations. Therefore, the ED may serve as an ideal excluded due to being too ill or breathless, 22 declined to participate,
location to connect them with palliative care services. leaving 99 participants who were recruited. For the qualitative
The intersection of emergency medicine and palliative care is component, purposive sampling was used to select participants. Eleven
particularly important for patients with complex and advanced disease, interviews were conducted.
as the decisions made in the ED may determine the trajectory of their
subsequent treatments, which can include life-prolonging therapies that Data collection tools
may not align with the patient’s goals of care [18,19]. Emerging data
from high-income settings suggests that [1] delivery of palliative care in Quantitative component
the emergency setting may allow patients to address or revisit their goals
of care and therefore guide medical treatment to align with their goals The Integrated Palliative care Outcome Scale (IPOS) tool was used to
and avoid unwanted hospital admissions and medical expenses and that collect data comprised of socio-demographics as well as assess the
[2] Palliative care initiated in the ED for patients with advanced cancer multidimensional needs of people with chronic illness including the
significantly improved quality of life without having a negative impact burden of unpleasant symptoms such as pain and extends to information
on survival [20,21]. needs, anxiety/low mood, family concerns and an overall feeling of
A study conducted by Hospice Africa Uganda (HAU) found that for peace. It is included below as Appendix 1. The IPOS has previously been
many aspects of end-of-life care at HAU, patients, caregivers, and validated and used clinically and for research purposes in many African
healthcare providers have different ideas about what constitutes quality settings [22–26].
care [3]. We therefore designed a study in the Kirrudu National Referral
Hospital ED to evaluate the palliative care needs of emergency patients Qualitative component
and barriers to initiation of palliative care as identified by the health
care workers caring for them. Grounded theory approach was used to develop the guide for con­
ducting the semi-structured interviews. The guide includes four sections
Methods (A-D), with an intent statement for each section, followed by questions.
The goal of section A was to introduce the study and address any con­
Design and setting cerns. The goal of section B was to develop a better understanding of the
palliative care resources available to provider and patient. The goal of
We conducted a concurrent mixed methods study comprised of two section C was to identify the challenges in providing palliative care, from
components. First, a cross sectional survey was used to collected quan­ the provider’s perspective. The goal of section D was to ensure all the
titative data from ED patients. Second, grounded theory approach was appropriate information was collected. The full guide is included as a
applied to in-depth interviews with emergency healthcare workers to Supplemental Figure.
gather qualitative data on barriers to palliative care delivery. For clarity,
we have chosen to present the two components of the study separately in Data collection procedures
the remainder of this methodology section and the following results
section. For the qualitative component, interviews were conducted face to
Kirrudu hospital is a public national referral hospital in Kampala, face by an experienced Ugandan palliative care physician who also has a
Uganda with a bed capacity of 200. There are additionally 14 outpatient PhD in qualitative research methods (LN), thus we have strong

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confidence in the trustworthiness of the qualitative data collected. The Table 1

interviews were audio recorded. Transcripts were generated with Zoom Demographic information.
electronic transcription service and by experienced, local research as­ Age
sistants. The transcripts were verified for accuracy by the interviewer.
Median (IQR) 36 (25-52)
For the quantitative component, trained research assistants approached Gender
ED patients identified by local healthcare workers as having palliative Female 51 (51.5 %)
care needs, and after consenting patients for inclusion, verbally Male 48 (48.5 %)
completed the IPOS, recording results on paper case report forms. Occupation
Petty business 36 (36.1 %)
Self employed 3 (3.0 %)
Data analysis Shop attendant 1 (1.0 %)
Specialized trade 29 (29.3 %)
Quantitative component Student 4 (4.0 %)
Unemployed 19 (19.2 %)
Diagnoses
Counts and Percentages were used to summarize categorical vari­ HIV 26 (26.3 %)
ables. Mean and Standard Deviation or Median and IQR were used to Heart disease 18 (18.2 %)
summarize continuous variables, depending on normality. Univariable Sickle Cell 14 (14.1 %)
linear regression or the Student’s T Test was used to test for associations Cancer 7 (7.0 %)
Liver failure 8 (8 %)
of patient characteristics, such as age, gender, and diagnosis with total HIV-TB 6 (6 %)
score. These variables were then included in a multivariable linear TB 7 (7 %)
regression model of total score. A P Value < 0.05 was considered sta­ Renal failure 5 (5 %)
tistically significant. All analyses were completed using SAS Version 9.4 Other 9 (9.1 %)
(SAS Institute Inc, Cary, North Carolina).

Qualitative component

Transcripts of the recorded interviews with emergency healthcare

workers were coded by DH and ER. Grounded theory approach was used
to code responses. The coded concepts were reviewed and collapsed into
themes with discrepancies resolved by consensus.

Ethical considerations

The study protocol was approved by the Mulago Ethics and Research
committee and administrative clearance was given by Kiruddu hospital
before the study commenced. The study protocol was also approved by
the Yale University Internal Review Board. The study information sheet
and consent form were read out loud for those who were illiterate.
Written consent was obtained for those who agreed to participate by
signature or thumb print .

Results
Fig. 1. IPOS Patient-reported Symptoms.

The results of our survey of ED patients and qualitative interviews

pharmacies.
with ED healthcare workers are presented separately. We will first
discuss the quantitative results, followed by the qualitative results from
Qualitative results
in-depth interviews with healthcare providers.

Four main themes emerged from our in-depth interviews with eleven
Quantitative results
Kirrudu ED healthcare workers: (1) Lack of adequate Palliative Care
training among healthcare workers (2) Palliative care being associated
Ninety-nine patients completed the survey, with a median age of 36
only with pain control (3) Financial constraints for patients and (4) the
years. Fifty-one percent were female. Four percent of the population had
ED as a challenging environment to deliver PC due to patient volume,
no formal education, while 32 % had completed either Primary 6 or 7.
understaffing. Table 2 presents these four themes in greater detail, with
Forty percent of the population was employed in small business. De­
quotations from healthcare workers to help further describe the barriers
mographic information is shown in Table 1, below.
to palliative care delivery in this setting.
The most common diagnoses were HIV, sickle cell disease and heart
disease. Please see Table 1 for a list of diagnoses by percentage of our
Discussion
study population.
Our study population reported high levels of untreated pain, as
Uganda is a beacon of Palliative Care on the continent of Africa, yet
measured by the IPOS scale, with 77 % reporting either severe or
despite many efforts to improve access to palliative care in this location,
overwhelming pain. Weakness, poor mobility and dyspnea were the next
the need remains great. Our study of palliative care needs and barriers in
most common symptoms reported. Please see Fig. 1 for an infographic
ED patients and healthcare providers in Kampala, Uganda identified a
displaying the IPOS symptoms with severity, by percentage of our study
number of important, actionable findings.
population. In addition, our patient population also reported mobility
deficits, with 71 % stating either severe or overwhelming lack of
mobility. With its emphasis on home-based care and relief of symptoms,
palliative care decreases the need for travel to medical clinics,

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Table 2 Palliative care needs

Healthcare provider interviews: four most common themes.
Theme Quotations First, this ED population is young, with a median age of 35 years and
a great need for palliative care: 77 % reported severe or overwhelming
Lack of adequate Palliative Care HCW1-K (Nursing Officer, Female):
training among health care workers “You take those modules but we don’t pain, 76 % had severe or overwhelming weakness, another 71 % had
practice them much…so there is no severe or overwhelmingly poor mobility, and 56 % reported severe or
• This was noted across every practice of it. So that much practice overwhelming dyspnea. These results are similar to those found in a
interviewer with training ranging from being limited takes time you’re not 2012 study of inpatients in this setting [27]. Important for palliative care
a brief course in medical school, to on- doing it and find [yourself] forgetting it
the-job training, to no training at all. and limiting the skills.”
delivery strategy, 71 % of patients reported either severe or over­
This is further exacerbated as providers whelming lack of mobility. The spectrum of terminal illnesses identified
are unable to identify those who may HCW6-K (Physician, Male): “I imagine is also unique. As opposed to cancer, the majority had: HIV (26 %), heart
have a palliative care need and if they the first challenge it would be failure (18 %) and sickle cell disease (14 %). Regarding the reported
are identified, they do not possess the recognizing that the patient has a need.
mobility deficits (71 % reported severe or overwhelming lack of
skills to care for or address those They may not be able to tell that the
needs. Multiple providers cited that patient really has a palliative care need. mobility): with its emphasis on home-based care and relief of symptoms,
increased knowledge among all Okay they may know that there is a palliative care decreases the need for travel to medical clinics, phar­
healthcare providers would be problem, but they might not recognize macies. In this way, it is also an ideal option for patients with mobility
beneficial to providing better palliative that there is a palliative care need for deficits who would otherwise struggle to travel to a medical facility for
care to patients. the patient.”
Palliative care is associated with pain HCW10-K (Medical Officer, Female): “I
care.
management only think may be the one big challenge we As a point of comparison, a similar study was recently conducted in
have is we don’t factor that these the Mbarara, Uganda Emergency Department [28]. In this study, re­
• When asked about palliative care patients need palliative care. We tend to searchers looked at palliative care needs and whether those patients who
resources, 8/11 providers associated stop at giving you drugs, hopefully they
were identified as having palliative care needs then went on to receive
palliative care resources in pain will make you better or they won’t make
medications, especially morphine as you better and we don’t consider the palliative care during their hospitalization. The Mbarara study provides
the primary analgesic. Pain other needs of the patient [such as pain a relatively similar population for comparison, though it is noted that a
management was also cited as the control].” different palliative care screening tool was used. In this study, ED pa­
focus in palliative care education for tients were screened for palliative care needs, those who screened in
three of the providers. Among nursing
were followed up at day 7 of their hospitalization to determine whether
providers, palliative care was
associated with counseling and PC was initiated and mortality. Of 760 patients screened, 120 were
psychosocial support in addition to found to have PC needs, and 86 were included in the study. The popu­
pain control while physicians lation was similarly young (mean age 49 years) and most common di­
frequently cited pain management and
agnoses were cancer, heart disease, and stroke. Mortality in this cohort
none had seen the psychosocial aspects
of palliative care delivered in the was high: 37 % of admitted patients had died at day 7, reflecting severity
emergency department. of disease at presentation. In addition, 63 % of the patients who screened
Financial constraints are the greatest HCW2-K (Intern/Post Graduate Year 1, in for PC needs actually received it during their hospitalization. Re­
challenges that patients face when Female) Actually most patients come searchers concluded that there is a need for a PC screening tool to be
presenting with palliative care and they are paying too much because
adapted for use by ED providers for every patient, which would help
needs. most of those [incurable] conditions, for
example, patients with CKD, they’ve identify patients with PC needs and thus increase access to PC for these
• Almost every provider described gone through a lot of pain, they don’t ED patients advanced disease. They also conclude that education in PC
finances as a challenge for patients have finances, they don’t know who to should be mandatory for ED providers, so that they have the skills to
who present to the emergency run to, who can help them out, so it’s
initiate PC themselves as opposed to waiting for a consulting service.
department which affects the patients’ [finances] a big challenge.”
ability to access medications,
Adult palliative care in developed settings often describes an elderly
nutritional supplements, and medical demographic with the median age above 70, with incurable cancer or
care at the hospital. multimorbidity as the most common terminal illnesses [29,30]. How­
Palliative care delivery in the HCW11-K (Intern/ Post Graduate Year ever we describe a relatively young population. Therefore, the approach
emergency department is 1, Male): “I think part of it to be
to identification and provision of palliative care in this setting must be
challenging for providers due to attributed to the workload since you’re
patient volume and understaffing having a lot of patients coming in and at contextual, locally derived and built as opposed to transplanted. The ED
which result in decreased time for times staffing is down so you don’t get could serve as a vital area for early patient assessment and identification
patient interactions. enough time to talk to these patients to of these patients with unmet palliative care needs.
identify their needs. You end up
• Many providers agree that having a stabilizing them and sending them to
palliative care team member present in the different wards.” Palliative care barriers
the emergency department would be HCW5-K (Senior Assistant Nursing
valuable and help address the Officer, Female): “I see we don’t give On the provider side, the main barriers to palliative care delivery in
palliative care needs of patients. these patients enough time because we this ED setting were: lack of palliative care training, challenges to de­
There is also an expectation that the are very few, so we really don’t give
palliative care needs will be them the holistic palliative care we are
livery of palliative care in the ED such as high volumes of patients with
addressed by the wards once the supposed–they are supposed to receive few staff and lack of privacy, lack of knowledge of the full spectrum of
patient has been stabilized in the because we are very few.” palliative care, and financial barriers to care due to the high costs.
emergency department. Additionally, 40 % of this population run small businesses and 20 %
HCW10-K (Medical Officer, Female): “In
were unemployed. The financial constraints are further exacerbated as
most cases you’re thinking ‘I need to just
do the medical bit and send them to the only 1 % of Ugandans have private insurance [23]. In Uganda, a free
wards and hopefully they can continue healthcare system exists however, financial and resource constraints
their care from there’.” often require patients to purchase medications and services out of
pocket. These so called ‘out of pocket payments’ are cash exchanges at
point of care, are unregulated and particularly problematic: in Uganda
and other LMICs, health-related costs may become catastrophic expen­
ditures which push families into poverty. The reasons are multifactorial
but include out-of-pocket payments, lack of health insurance programs,

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and limited savings [15,12]. Palliative care may offer a resource-sparing barriers to palliative care delivery in the ED. Clearer indications
alternative to care that is non-beneficial, thus adding value to health regarding when and how to approach a patient with possible palliative
care [31–33]. In line with this, all healthcare providers we interviewed care needs and improved education/clinical support models aimed at
stated that financial constraints were a barrier to patient care. Palliative equipping providers with the skills to assess and address these needs are
care is a patient-centered, value-added approach which offers a favor­ critical next steps.
able cost profile for both health systems and households, and in this way,
would address the barrier of financial constraints early on in the disease Dissemination of results
trajectory rather than later when catastrophic expenditure has already
occurred. Results from this study were shared with staff members at the data
PC training has been incorporated into most medical training collection site through an informal presentation. The results are also
curricula in Uganda. The majority of healthcare workers interviewed being included and incorporated into Palliative Care teaching modules
admitted to having a module or two on palliative care but went on to for junior doctors in this location as well as a medical simulation case for
describe non-utilization of this theoretical education due to a number of junior doctors and Master of Emergency Medicine Students in this
practical hindrances such as high patient volumes and understaffing. location. The results were presented at the 2022 African Conference on
This therefore highlights the need for a shift of focus in the way that we Emergency Medicine.
train palliative care, especially for the ED provider, to emphasis prac­
tical integration of theoretical knowledge for example by enhancing Declaration of Competing Interests
mentorship and support supervision [34,35].
Many healthcare providers cited the challenges of sharing news The authors declared no conflicts of interest.
regarding prognosis with a new patient in the emergency department
because they are only caring for the patient for a brief time in their Author’s contribution
disease course. It is important to note that palliative care is not synon­
ymous with end-of-life care, and one of the primary goals of palliative Authors contributed as follows to the conception or design of the
care is to ensure that the care plan is consistent with the patient’s goals work; the acquisition, analysis, or interpretation of data for the work;
of care, regardless of whether that includes pursuing all life-sustaining and drafting the work or revising it critically for important intellectual
procedures or comfort measures only and discharge to hospice. As the content: ER contributed 20 %; Dao Ho contribute 20 %; Liz Namukwaya
ED is often the entry point into the health system, it is an ideal location contributed 20 %; Mhoira Leng contributed 15 %, Peace Bagasha
to clarify the care plan and ensure the correct trajectory for the patient’s contributed 10 %; Michael Lukoma contributed 15 %. All authors
medical care going forward. approved the version to be published and agreed to be accountable for
all aspects of the work.
Strengths and limitations
Acknowledgments
Although our study provides novel insights into the needs and bar­
riers to delivery of palliative care in this resource-limited setting, there The authors would like to thank all who participated in the in­
are several important limitations. First, due to the study design and terviews including interviewees and research assistants. We also extend
convenience sampling it is unclear whether our study population is our thanks to the Yale Downs Fellowship for their funding of this
representative of the larger ED presenting population, which may in turn research and the Yale Department of Emergency Medicine for its sup­
limit the generalizability of our qualitative findings. In the future, it port. Finally, we thank the Yale Center for Analytical Sciences for
would be interesting to conduct a larger study collecting data on base­ providing statistical analysis.
line presenting chief complaints and medical comorbidities of the larger
population. This would also enable us to compare our results with those Supplementary materials
of others both locally and regionally. Nevertheless, our inclusion criteria
were broad, the Ugandan research team is highly experienced using the Supplementary material associated with this article can be found, in
IPOS tool and enrolling subjects in palliative care research in this the online version, at doi:10.1016/j.afjem.2023.11.005.
setting, which are all strengths of this study. Second, while the in­
terviews included healthcare workers of various clinical positions, the References
results from the interviews may not reflect the experiences of healthcare
workers in other similar settings. We utilized several strategies to [1] Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C,
Bruera E, Buitrago R, Burla C, Callaway M, Munyoro EC, Centeno C, Cleary J,
minimize researcher and measurement bias and ensure data reliability Connor S, Davaasuren O, Downing J, Foley K, Goh C, Gomez-Garcia W, Harding R,
including consistent use of the interview guide, audio recording in­ Khan QT, Larkin P, Leng M, Luyirika E, Marston J, Moine S, Osman H, Pettus K,
terviews, standardized coding, and maintenance of materials to achieve Puchalski C, Rajagopal MR, Spence D, Spruijt O, Venkateswaran C, Wee B,
Woodruff R, Yong J, Pastrana T. Redefining palliative care-A new consensus-based
auditability. definition. J Pain Symptom Manage 2020;60(4):754–64. https://doi.org/10.1016/
j.jpainsymman.2020.04.027. Epub 2020 May 6. PMID: 32387576; PMCID:
Conclusions PMC8096724.
[2] Knaul FM, et al. Alleviating the access abyss in palliative care and pain relief—an
imperative of universal health coverage: the Lancet Commission report. The lancet
While not traditionally linked with Palliative Care, the ED is actually, 2018;391(10128):1391–454.
radically, an ideal location to initiate palliative care. This study provides [3] Campbell J, Buyinza N, Hauser J. Perspective on care at the end of life at hospice
Africa Uganda. J Palliat Med 2018;21(7):901–6.
insights into the palliative care needs of patients presenting to an urban [4] Fraser B, et al. Palliative care development in Africa: lessons from Uganda and
Ugandan ED, and barriers to palliative care delivery as perceived by the Kenya. J Glob Oncol 2017:1–10.
healthcare workers caring for them. As such, the findings are relevant [5] Lewington J, Namukwaya E, Limoges J, Leng M, Harding R. Provision of palliative
care for life-limiting disease in a low income country national hospital setting: how
for the management of African EDs and in particular for the recognition,
much is needed? BMJ Support Palliat Care 2012;2:140–4.
assessment and management of palliative care needs in ED patients, [6] Rhee JY, et al. An analysis of palliative care development in Africa: a ranking based
integration of palliative care competencies for healthcare providers, and on region-specific macroindicators. J Pain Symptom Manage 2018;56(2):230–8.
referral pathways for specialist palliative care support. These novel in­ [7] Powell RA, et al. Development of the APCA African palliative outcome scale. J Pain
Symptom Manage 2007;33(2):229–32.
sights can be used to guide the development of applications to assist with [8] Kamonyo ES. The palliative care journey in Kenya and Uganda. J Pain Symptom
identifying patients with palliative care needs, and also to address Manage 2018;55(2S):S46–54.

343
E. Reid et al. African Journal of Emergency Medicine 13 (2023) 339–344

[9] May P, Normand C, Morrison RS. Economics of palliative care for cancer: [23] Harding R, Selman L, Aguipo G, Dinat N, Downing J, Gwyther L, Mashao T,
interpreting current evidence, mapping future priorities for research. J Clin Oncol Mmoledi K, Moll T, Sebuyira LM, Panjatovic B, Higginson IJ. Validation of a core
2020;38(9). outcome measure for palliative care in Africa: the APCA African Palliative
[10] Low D, et al. End-of-life palliative care practices and referrals in Uganda. J Palliat Outcome Scale. Health Qual Life Outcomes 2010;8(10).
Med 2018;21(3):328–34. [24] Downing J, Simon ST, Mwangi-Powell FN, Benalia H, Daveson BA, Higginson IJ,
[11] Reid E, Kovalerchik O, Jubanyik K, Brown S, Grant L. Is palliative care cost- Harding R, Bausewein C. Project PRISMA. Outcomes ’out of Africa’: the selection
effective in low-income and middle-income countries? A mixed-methods and implementation of outcome measures for palliative care in Africa. BMC Palliat
systematic review. Brit Med J Support Palliat Care 2018;0:1–10. https://doi.org/ Care 2012 Jan 6;11(1). https://doi.org/10.1186/1472-684X-11-1.
10.1136/bmjspcare-2018-001499. [25] Gwyther L, Harding R, Selman L, Mashao T, Dinat N, Mpanga-Sebuyira L,
[12] Anderson RE, Grant L. What is the value of palliative care provision in low-resource Mmoledi K, Agupio G, Gillespie C, Panatovic B. Symptom prevalence and factors
settings? BMJ Glob Health 2017;2:e000139. https://doi.org/10.1136/bmjgh- associated with burden indices among palliative care patients: a multicentre study
2016-000139. in 2 Sub-Saharan African countries. Eur J Palliat Care 2007. EAPC.
[13] Grudzen CR, et al. Palliative care needs of seriously ill, older adults presenting to [26] Harding R, Panatovic B, Agupio G, Gillespie C, Mashao T, Mmoledi K, Ndlovu P,
the emergency department. Acad Emerg Med 2010;17(11):1253–7. Dinat N, Gwyther L, Mpanga-Seburia L. Measuring pain and symptoms in resource-
[14] Reid EA, Gudina EK, Ayers N, Tigineh W, Azmera YM. Caring for life-limiting poor settings: a comparison of verbal, visual and hand scoring methods in Sub-
illness in Ethiopia: a mixed-methods assessment of outpatient palliative care needs. Saharan Africa. Eur J Palliat Care 2007. EAPC.
J Palliat Med 2018;21(5):622–30. https://doi.org/10.1089/jpm.2017.0419. Epub [27] Lewington J, Namukwaya E, Limoges J, Leng M, Harding R. Provision of palliative
2018 Feb 9. PMID: 29425055. care for life-limiting disease in a low income country national hospital setting: how
[15] Reid E, Ghoshal A, Khalil A, Jiang J, Normand C, Brackett A, et al. (2022) Out-of- much is needed? BMJ Support Palliat Care 2012;2:140–4. https://doi.org/
pocket costs near end of life in low- and middle-income countries: a systematic 10.1136/bmjspcare-2011-000188.
review. PLOS Glob Public Health 2022;2(1):e0000005. https://doi.org/10.1371/ [28] Nalugya L, Harbourne D, Reid E. Factors affecting initiation of palliative care in a
journal.pgph.0000005. Ugandan Emergency Department. Afr J Emerg Med 2021;11(4):442–6.
[16] Reid E, Abathun E, Diribi J, Mamo Y, Wondemagegnhu T, Hall P, Fallon M, [29] Finucane AM, Swenson C, MacArtney JI, Perry R, Lamberton H, Hetherington L,
Grant L. Early palliative care in newly diagnosed cancer in Ethiopia: feasibility Graham-Wisener L, Murray SA, Carduff E. What makes palliative care needs
randomised controlled trial and cost analysis. BMJ Support Palliat Care 2022. “complex”? A multisite sequential explanatory mixed methods study of patients
https://doi.org/10.1136/spcare-2022-003996. referred for specialist palliative care. BMC Palliat Care 2021;20:1–11.
[17] Bates MJ, Gordon MRP, Gordon SB, Tomeny EM, Muula AS, Davies H, Morris C, [30] Reinke LF, Vig EK, Tartaglione EV, Rise P, Au DH. Symptom burden and palliative
Manthalu G, Namisango E, Masamba L, Henrion MYR, MacPherson P, Squire SB, care needs among high-risk veterans with multimorbidity. J Pain Sympt Manage
Niessen LW. Palliative care and catastrophic costs in Malawi after a diagnosis of 2019;57(5):880–9.
advanced cancer: a prospective cohort study. Lancet Glob Health 2021;9(12): [31] Reid E, Kovalerchik O, Jubanyik K, Brown S, Grant L. Is palliative care cost-
e1750–7. https://doi.org/10.1016/S2214-109X(21)00408-3. Epub 2021 Oct 29. effective in low-income and middle-income countries? A mixed-methods
Erratum in: Lancet Glob Health. 2021 Dec;9(12):e1657. PMID: 34756183; PMCID: systematic review. Brit Med J Support Palliat Care 2018;0:1–10. https://doi.org/
PMC8600125. 10.1136/bmjspcare-2018-001499.
[18] Grudzen CR, et al. Does palliative care have a future in the emergency department? [32] Reid E, Abathun E, Diribi J, Mamo Y, Wondemagegnhu T, Hall P, Fallon M,
Discussions with attending emergency physicians. J Pain Symptom Manage 2012; Grant L. Early palliative care in newly diagnosed cancer in Ethiopia: feasibility
43(1):1–9. randomised controlled trial and cost analysis. BMJ Supp Palliat Care 2022. https://
[19] Wu FM, et al. Effects of initiating palliative care consultation in the emergency doi.org/10.1136/spcare-2022-003996. Published Online First:22 November.
department on inpatient length of stay. J Palliat Med 2013;16(11):1362–7. [33] May P, Garrido MM, Cassel JB, Kelley AS, Meier DE, Normand C, Smith TJ,
[20] Grudzen CR, et al. Emergency department-initiated palliative care in advanced Morrison RS. Cost analysis of a prospective multi-site cohort study of palliative care
cancer a randomized clinical trial. JAMA Oncol 2016;2(5):591–8. consultation teams for adults with advanced cancer: where do cost-savings come
[21] George N, et al. Palliative care screening and assessment in the emergency from? Palliat Med 2017;31(4):378–86. https://doi.org/10.1177/
department: a systematic review. J Pain Sympt Manage 2016;51(1):108–19. e2. 0269216317690098. Epub 2017 Feb 3. PMID: 28156192.
[22] Harding R, Selman L, Simms VM, Penfold S, Agupio G, Dinat N, Downing J, [34] Levine S, O’Mahony S, Baron A, Ansari A, Deamant C, Frader J, Leyva I,
Gwyther L, Ikin B, Mashao T, Mmoledi K, Sebuyira LM, Moll T, Mwangi-Powell F, Marschke M, Preodor M. Training the workforce: description of a longitudinal
Namisango E, Powell RA, Walkey FH, Higginson IJ, Siegert RJ. How to analyze interdisciplinary education and mentoring program in palliative care. J Pain Sympt
palliative care outcome data for patients in Sub-Saharan Africa: an international, Manage 2017;53(4):728–37.
multicenter, factor analytic examination of the APCA African POS. J Pain Symptom [35] Herce ME, Elmore SN, Kalanga N, Keck JW, Wroe EB, Phiri A, Mayfield A,
Manage 2013;45(4):746–52. https://doi.org/10.1016/j. Chingoli F, Beste JA, Tengatenga L, Bazile J. Assessing and responding to palliative
jpainsymman.2012.04.007. Epub 2012 Sep 24. care needs in rural sub-Saharan Africa: results from a model intervention and
situation analysis in Malawi. PLoS ONE 2014;9(10):p.e110457.

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