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Medical Manuscript
A Structured Approach to End-of-Life
Decision Making Improves Quality of Care
for Patients With Terminal Illness in a
Teaching Hospital in Ghana
Ama Kyerewaa Edwin, MBChB, MPhil, DBE
1,2
, Summer Johnson McGee, PhD, CPH
3
,
Edwina Addo Opare-Lokko, MBChB, MGCP, MWACP
1,4
,
and Mawuli Kotope Gyakobo, MBChB, PhD, FWACP
1,5,6,7
Abstract
Purpose: To determine whether a structured approach to end-of-life decision-making directed by a compassionate interdisciplinary
team would improve the quality of care for patients with terminal illness in a teaching hospital in Ghana. Findings: A retrospective
analysis was done for 20 patients who consented to participate in the structured approach to end-of-life decision-making. Twenty
patients whose care did not follow the structured approach were selected as controls. Outcome measures were nociceptive pain
control, completing relationships, and emotional response towards dying. These measures were statistically superior in the study
group compared to the control group. Conclusions: A structured approach to end-of-life decision-making significantly improves
the quality of care for patients with terminal illness in the domains of pain control, completing relationships and emotional
responses towards dying.
Keywords
palliative care, interdisciplinary team, end-of-life decision making, quality of care, terminal illness, outcome evaluation, teaching
hospital in Ghana
Introduction
Despite the growing evidence that early end-of-life care plan-
ning is beneficial when administered as part of routine care,
1
end-of-life decision making continues to be challenging for
many clinicians because of barriers such as lack of communi-
cation skills in breaking bad news, fear of upsetting patients,
a focus on curative care even when the patient is dying, and
limited time and space for end-of-life decision making.
2
Because of these barriers, most clinicians perform this task
poorly or avoid it completely. There is evidence that the quality
of care delivered to terminally ill patients is rarely optimal.
3
Suboptimal end-of-life care is prevalent in all life-limiting con-
ditions but is particularly worrisome in cancer care, where most
patients must contend with symptoms and treatments that may
worsen their quality of life.
Ghana, with estimatedcancer deaths of 10 700 in 2012,
4
is par-
ticularly challenged when it comes to palliative care in patients
with cancer. Due to low awareness of cancer in Ghana, a large
proportion of patients with cancer present with advanced cancers
that are incurable at the time of diagnosis.
5
For these patients,
often the only realistic goal of care is palliative. However, due
to the unavailability of such services many patients who could
have benefitted from palliative care die without the needed
support. Four pillars are central to the World Health Organiza-
tion’s public health palliative care strategic response to this prob-
lem which include
6
government policy and national strategy to
improve access, education for health workers and the public, drug
availability, and implementation of palliative care throughout
health care systems. Recently, investigators from the Palliative
Care, Policy and Rehabilitation Unit of Kings College London
working together with investigators from the African Palliative
Care Association proposed a fifth pillar, generation of locally
1
Palliative Care Service, Korle Bu Teaching Hospital, Accra, Ghana
2
Neiswanger Institute of Bioethics, Stritch School of Medicine, Loyola
University Chicago, Chicago, IL, USA
3
College of Business, University of New Haven, West Haven, CT, USA
4
Institute for Palliative Medicine, Ohio Health Kobacker House, Columbus,
OH, USA
5
Ohio Health Kobacker House, Columbus, OH, USA
6
University of Wisconsin Carbone Cancer Centre, Madison, WI, USA
7
Faculty of Family Medicine, Ghana College of Physicians and Surgeons, Accra,
Ghana
Corresponding Author:
Ama Kyerewaa Edwin, MBChB, MPhil, DBE, Directorate of Medical Affairs,
Korle Bu Teaching Hospital, Accra, Ghana.
Email: amaedwin@gmail.com
American Journal of Hospice
& Palliative Medicine
®
1-6
ªThe Author(s) 2014
Reprints and permission:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/1049909114557350
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relevant research evidence to support the public health strategy
for palliative care.
7
The fifth pillaris dependent on the availability
of locally validated, patient-reported outcome measures. How-
ever, evaluation of palliative care in Africa in terms of outcomes
and effectiveness is grossly lacking. Harding and Higginson, in a
review, found that of 26 service organizations identified on the
continent, only 8 provided any formof monitoring or evaluation.
8
The 4 pillars are operational in Ghana but like most African
nations, the fifth pillar is largely nonexistent.
At the Korle Bu Teaching Hospital (KBTH) in Ghana,
suboptimal end-of-life care for patients with cancer has been
a recurring problem, resulting in complaints from patients
and families in several instances. Although ‘‘end-of-life con-
versations need to become a routine structured inter-
vention ...,’’
9
they are not. The KBTH established a
palliative care team (PCT) in May 2012 to address these defi-
ciencies in the quality of care delivered to terminally ill
patients. The PCT instituted a structured approach to end-of-
life decision making to improve the quality of care for patients
with terminal illness.
The PCT’s palliative care intervention commenced in
August 2012. The current study lays the foundation for setting
up the fifth pillar in Ghana and provides the first evaluation of
the PCT’s use of a structured end-of-life decision-making pro-
cess. The authors are unaware of previous studies reporting the
adoption of such a structured approach to end-of-life care on
the African continent. It was hypothesized that the structured
approach to end-of-life decision making directed by a compas-
sionate interdisciplinary team would improve the quality of
care for patients with terminal illness and would be consistent
with a more ethically justifiable patient-centered approach for
end-of-life care.
The Structured Approach to Palliative Care
Consultation
The PCT’s approach is based on Fins’ ‘‘Goal-Setting: a strat-
egy for effective palliative care.’’
10
The structured approach
developed in this study is a 4-step process by which patients
and families are engaged in the palliative care process. These
steps are determining triggers, gathering information, articulat-
ing goals of care, and building consensus for goals of care. The
approach provides a framework for thinking about and working
through a range of problems that arise in the provision of end-
of-life care. Such issues include the transition from restorative
care to palliative care, emotional responses to death and dying,
symptom (particularly pain) control, and completing relation-
ships. Prior to this intervention, end-of-life care was left in the
hands of the patient’s primary physicians. The PCT’s interven-
tion was thus a novel one in KBTH.
Determining Triggers
Patients with advanced disease prefer frank discussions on their
prognosis and end-of-life care with their clinicians early in the
course of their disease,
11
in the outpatient setting.
1
Thus, to
facilitate end-of-life decision making, clinicians need to recog-
nize triggers for initiating end-of-life discussions with patients
and/or family. Triggers include spontaneous (or elicited)
requests for end-of-life discussions by the patient or the family,
perception that the patient is dying, when end-of-life decisions
such as withholding or withdrawing life-sustaining treatments
have been made and when there is a significant clinical devel-
opment such as a worsening of the clinical course in a patient
with life-threatening illness,
1
especially one needing intensive
care unit admission and refractory end-of-life symptoms. One
of our patients, a 44-year-old woman with widespread meta-
static breast cancer, sought prognostic information from her
oncologist after noticing new growths in the skin. In spite of her
query and clinical deterioration, the oncologist did not initiate
end-of-life discussion, feeling the patient was not ready. The
palliative care referral came only 2 days prior to the patient’s
death. The triggers to initiating end-of-life discussions in this
case were regrettably overlooked by the oncologist.
Gathering Information
The patient’s clinical and narrative data are needed to formu-
late the care plan. While clinical data may be readily available
in patient’s charts, talking to others involved in the patient’s
care can be a source of valuable information. In addition, ‘‘lis-
tening’’ to the patient and family’s narrative brings the relevant
psychosocial, spiritual, and existential issues to the fore; good
end-of-life care is context specific. Master Q was a 3-year-old
boy diagnosed with embryonal rhabdomyosarcoma of the blad-
der when he was 8 months old. He had received 12 cycles of
first-line chemotherapy prior to surgery. However, the cancer
recurred less than a month after surgery, with rectal involve-
ment. Palliative radiotherapy did not result in any improve-
ment. In the PCT’s process of gathering information, it
became obvious that in spite of prior discussion with the pedia-
tric oncology team, the mother did not fully understand her
son’s clinical situation. She was unaware of the implications
of the recurrence and why the second line of chemotherapy was
terminated after only 3 cycles. The PCT explained the nature of
the son’s condition, the poor response to treatment, and why the
second-line chemotherapy was terminated. Only then did it
become clear to the mother that the son’s condition was termi-
nal. That understanding was crucial for formulating and articu-
lating the care plan for the patient.
Articulating Goals of Care
As the patient’s clinical picture and narrative picture emerge,
the goals of care become clearer. Goals of care are not static;
they change with the patient’s condition. They may progress
from a cure, through restoring function, prolonging life, to pal-
liative and comfort care. Because hardly any patient chooses
palliative care as a first choice in goals of care, it is a choice
that only becomes acceptable with time.
10
This usually occurs
when patients accept the terminal nature of their illness. At this
point, it becomes important to clearly articulate what is
2American Journal of Hospice & Palliative Medicine
®
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achievable in terms of symptom control, level of consciousness
and its likely deterioration with time, the need to have impor-
tant end-of-life conversations with family, and legal discus-
sions regarding the patient’s will so as to facilitate the
process of developing a care plan.
Building Consensus for Goals of Care
Once the goals of care have been articulated, the clinician
should suggest a care plan to the patient and family, ensuring
that all the key players understand what the next steps are. This
often means getting other services such as palliative care, hos-
pice, spiritual care, psychological care, social work, and clini-
cal ethics involved in the patient’s care.
Because conflict over end-of-life treatment decisions is an
important ethical challenge for the society,
12
it is important
to build consensus with other key players in the patient’s care
when developing a care plan for the patient. If this is not done,
it can lead to a potential conflict when the patient is unable to
state his or her position. Although a surrogate increases the
chances of a patient’s wishes being carried out,
13
having a sur-
rogate does not rule out a potential conflict when the patient
becomes incapacitated. Conflicts can be especially difficult
to resolve when it has to do with futile treatments as one case
illustrated. A 74-year-old man with metastatic cancer of the
stomach had been seeing the PCT for a few months. On the last
home visit, it was discovered that the patient had been semicon-
scious for 5 days. He had stopped eating but the family care-
giver had been force-feeding him with juices. Although the
PCT had been having end-of-life discussions with the patient
and his family and he had articulated his goals of care, specify-
ing that he wanted to die at home and did not want any heroic
measures, his wife, who was his surrogate, and his children
were having difficulty coming to terms with the patient’s
wishes. The family was concerned that the patient was semi-
conscious because he had not been eating. They wanted a naso-
gastric (NG) tube passed so the patient could be tube fed. The
PCT’s opinion was that the patient was dying and passing the
NG tube would be futile. As a compromise, an intravenous
infusion of dextrose was set up, and a plan made to review the
patient the following day. If there was significant improve-
ment, the NG tube could possibly be passed. This was accepta-
ble to the patient’s family. However, when the patient was
reviewed the following day, it had become obvious to the fam-
ily that the patient was dying. They no longer wanted the NG
tube and the patient died peacefully that night. As recom-
mended by Workman,
3
a treatment trial deescalated and
resolved a potential conflict between the patient’s family and
the PCT about futile care.
Methodology
Study Design
This study was a retrospective chart review of patients who
died. The office in charge of research at KBTH determined that
this study was not humans research due to the anonymous
nature of the review and the use of deceased patient records.
The sample size was 40 including 20 cases and 20 controls.
The study is a retrospective analysis of outcomes of 20 con-
secutive terminally ill patients and their families who con-
sented to participate in the structured approach to end-of-life
decision making between December 2012 and April 2014 at the
KBTH and for whom complete follow-up data were available.
Outcome measures of interest were nociceptive pain control,
completing relationships, and emotional response toward
dying. Twenty terminally ill patients and their families whose
care did not follow the structured approach and for whom com-
plete follow-up data were available were selected as controls.
Patients in the control group declined the structured approach
to care, preferring not to engage the team in discussing their
terminal illness. Their focus was on symptom control. All con-
trol and study group patients were dead at the time of the study.
Study Setting
The KBTH is a 2000-bed tertiary academic institution in Accra,
Ghana. The Oncology Center of the Hospital sees over 1100
patients per year.
5
This number is exclusive of patients with
cancer seen in other departments of the hospital. The core pal-
liative care service interdisciplinary team is made up of a
pediatric oncologist, 2 family physicians with international fel-
lowships in palliative care, a physician clinical psychologist
and bioethicist with special interest in end-of-life care, a clin-
ical pharmacist, 2 general/palliative care nurses, a public health
nurse, and 2 community health nurses. The team has access to a
radiotherapist, a chaplain, a social worker, a clinical and radia-
tion oncologist, and a surgeon.
Definitions
Pain control. Assessment of nociceptive pain control as judged
by the patient was scored on a 5-point scale: poor (no pain
relief) ¼1, fair (slight pain relief) ¼2, good (moderate pain
relief) ¼3, very good (mild residual pain) ¼4, and excellent
(no residual pain) ¼5.
Completing relationships. Byock’s description of ‘‘completing
relationships’’ was adopted in this study. ‘‘We are complete
in our relationships when we feel reconciled, whole, and at
peace. People say they feel complete when, if they were to die
tomorrow, they’d have no regrets—they would feel they had
left nothing undone ... or unsaid.’’
14
According to Byock, 4
simple phrases—‘‘Please forgive me,’’ ‘‘I forgive you,’’
‘‘Thank you,’’ and ‘‘I love you’’—carry enormous power to
mend and nurture relationships. All patients demonstrated
aspects of their relationship with significant others where they
needed to seek or grant forgiveness and express gratitude and/
or love. We scored ‘‘completing relationships’’ on the basis of
expressing the following 4 phrases to significant others: poor
(expressing none) ¼1, fair (expressing 1) ¼2, good
Edwin et al 3
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(expressing 2) ¼3, very good (expressing 3) ¼4, and excellent
(expressing all 4 phrases) ¼5.
Emotional response toward dying. The Kubler-Ross description of
emotional responses of the terminally ill toward dying
15
was
adopted. The stage of acceptance represented the most appro-
priate response, while denial was considered the least favorable
and most difficult to influence by targeted intervention. The
Kubler-Ross stages formed the basis for scoring as follows:
denial ¼1, anger ¼2, bargaining ¼3, depression ¼4, and
acceptance ¼5.
Statistical Analysis
Data for the study and control groups were analyzed for differ-
ences in the scores for pain control, completing relationships,
and emotional responses toward dying. The scores for the
groups were expressed as mean +standard deviation. Differ-
ences in the mean scores were compared between groups by
independent samples 2-sided Student t-test assuming equal var-
iance; a Pvalue <.05 was considered statistically significant.
Statistical analysis was performed using Microsoft Excel
2007 software Microsoft Corporation.
Results
In both groups, there were 11 females and 9 males. All patients
were referred on account of end-stage malignancies. The spectrum
of malignancies was similar between the 2 groups (Table 1).
Although the control group tended to be younger, the ages of the
2 groups did not differ in a statistically significant manner (Table
2). As indicated in Table 2, the outcome measures were demon-
strably superior in the study group compared to the control group.
Discussion
This study hypothesized that a structured approach to end-of-
life decision making directed by a compassionate interdisci-
plinary team improves the quality of care for patients with
terminal illness and is consistent with a more ethically justifiable
patient-centered approach for end-of-life care. The results show
that patients who had the structured approach to end-of-life deci-
sion making had significantly better outcomes in the measures
assessed. The most appreciable differences in outcomes between
the groups were seen in completing relationships and emotional
responses toward dying. In these outcome measures, the study
group averaged 3 and 2 times the scores for the control group,
respectively. The results of other workers endorse these findings,
indicating that patients are more satisfied with the quality of care
they receive when they are actively engaged in their medical
decisions.
16
Several studies have shown the efficacy of various
interventions that can improve end-of-life care.
17,18
Although
pain control was statistically superior in the study group, the
clinical difference between the groups was less than a unit score
of perceived pain relief. The Scottish Intercollegiate Guidelines
Network on the control of pain in adults with cancer indicates
that patients with cancer experience improved pain tolerance
when they are encouraged to express emotions and understand
the meaning and significance of the pain.
19
Possibly, the superior
pain scores observed in the study group is attributable to such
factors that were generally lacking in the control group. Addi-
tionally, other factors that contribute to an individual’s percep-
tion of pain, notably, existential issues, interruptions in
around-the-clock analgesia, and breakthrough analgesia were
more readily addressed in the study group because of more fre-
quent PCT visits.
Although not directly assessed, it was noted that the struc-
tured approach decreased the need for ethics consultations.
This is not surprising since many ethics consultations result
from conflicts about end-of-life decision making. Conflicts can
be especially difficult to resolve when it has to do with futile
treatments. As recommended by Workman,
3
a treatment trial
can often deescalate and resolve a potential conflict between
patients and their families and clinicians about futile care.
It is well documented that palliative care improves the qual-
ity of care for patients.
20,21
However, despite findings that early
integration of palliative care in patients’ treatment plans gives
patients better quality of life,
20
PCTs are often involved late in
the patient’s disease trajectory. Some investigators have sug-
gested that late involvement of palliative care makes no signif-
icant difference in the quality of care experienced by patients
with cancer,
22
but other reports indicate that caregiver satisfac-
tion, including caregiver attitudes toward palliative care, con-
sistently improved even with late referrals.
23
In this study,
caregivers who were part of the end-of-life discussions with
Table 1. Malignancies in Terminally Ill Patients.
Study group, N ¼20 Control group, N ¼20
GIT malignancies 5 GIT malignancies 5
Breast cancer 4 Breast cancer 3
Pancreatic cancer 2 Hepatocellular cancer 2
Ovarian cancer 2 Ovarian cancer 1
Head and neck cancer 2 Head and neck cancer 2
Osteosarcoma 1 Osteosarcoma 1
Malignant melanoma 1 SCC of face 1
Gall bladder cancer 1 Gall bladder cancer 1
Cervical cancer 1 Leukemia 1
Bladder cancer 1 Prostate cancer 1
Kidney cancer 1
Testicular cancer 1
Abbreviations: GIT, gastrointestinal; SCC, squamous cell carcinoma.
Table 2. Outcome Measures.
Study group
Control
group
P
value
Age, years 53.7 +17.5 41.9 +17.9 .062
Pain control 3.9 +0.7 3.3 +0.6 .004
Completing relationships 3.7 +0.8 1.2 +0.4 <.001
Emotional responses toward
dying
4.6 +0.7 2.3 +1.3 <.001
4American Journal of Hospice & Palliative Medicine
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patients reported more satisfaction than those who were not
part of such discussions. During bereavement visits by the
PCT, caregivers who had been part of the end-of-life conversa-
tions with the died patients were less distraught and apprecia-
tive of the services rendered. Caregivers who had not been
part of such conversations were less eager for bereavement vis-
its from the PCT.
Although there are guidelines on advanced care planning
for terminally ill patients expected to die within a year,
24
the
longest time a patient has been under the care of the PCT from
the time of referral to the time of death has been 9 months. To
date, all the patients with cancer who have been referred to the
PCT have been referred late. However, the findings of this
study show that even late referrals still benefit from palliative
care if a structured approach is followed; end-of-life discus-
sions are better late than never. Other workers have found that
late discussions about prognosis with patients help with
advanced care planning and make patients more satisfied with
end-of-life care, especially when their family members are
involved.
25
Palliative care is a great resource for helping patients with
end-of-life decision making.
26
End-of-life decision making is
more manageable and satisfying for all involved when super-
vised by a compassionate interdisciplinary team, using a frame-
work of shared decision making with patients and/or their
families.
27
Limitations
This study suffers from small sample size limitations. Its ability to
determine significant differences between outcome measures
assessed is therefore restricted. Additionally, the study is retro-
spective and therefore errors due to confounding and bias could
have influenced the outcomes. Since patients in the control group
declined thestructured approachto care, our results may be biased
by the fact that the study group may have been predisposed to
engaging in end-of-life discussion, while the control group was
less inclined to do so. This is a major limitation of this study.
It has been documented that willingness to discuss end-of-life
care is predicted by older age.
28
The control group was signifi-
cantly younger than the study group, and this age difference
between the groups may account for different attitudes toward
palliative care and end-of-life decision making. This may explain
why the control group declined the structuredapproach toend-of-
life care and suggests that future work will be necessary to ensure
that this structured approach can be adopted by patients of all ages
and that it is equally effective for patients regardless of age.
However, it is important to note that this work is the first
attempt to study and measure the impact of a structured approach
to end-of-life care inGhana. Despite these limitations, this workis
essentialto establishing the feasibility and importance of institut-
ing an interdisciplinary PCT in Ghana. These preliminary results
suggest that patient outcomes are dramatically improved by the
establishment and use of these teams. Future research will address
these limitations by random case selection or trying to control for
these factors.
Conclusion
This study aimed to evaluate the outcomes of a structured
approach by an interdisciplinary PCT in a teaching hospital
in Ghana and found that the approach significantly improved
relevant outcomes for end-of-life care.
The improvements occurred in the domains of pain control,
completing relationships, and emotional responses toward
dying. In these domains, the greatest improvements were seen
in completing relationships, emotional responses toward dying,
and pain control in decreasing order of magnitude.
Acknowledgments
The authors acknowledge Dr Frank Edwin for helping with the statis-
tical analysis and the Korle Bu Teaching Hospital Palliative Care
Team for helping with patient management.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship,
and/or publication of this article.
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