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A Structured Approach to End-of-Life Decision Making Improves Quality of Care for Patients With Terminal Illness in a Teaching Hospital in Ghana

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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.
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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:
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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
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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
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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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... O estudo realizado por Edwin Johnson, Opare-Lokko e Gyakobo 31 concluiu que uma abordagem estruturada para a tomada de decisão de fim de vida melhora significativamente a qualidade do cuidado de pacientes com doenças termianais. Utilizaram como medidas de desfecho o controle da dor, os relacionamentos completos (caracterizado pelo sentimento de reconciliação, que nada foi deixado por fazer) e resposta emocional a morte.Todas as medidas foram estatisticamente superiores no grupo de estudo em relação ao controle31 . ...
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Para avaliar a tomada de decisão compartilhada em fim de vida em hospitais, foi realizada uma revisão integrativa de literatura, a qual resultou em 23 artigos. A TDC consiste em um conceito abrangente para orientar as condutas médicas e da equipe de saúde em consonância com os pacientes, com ambas as partes participando ativamente do processo. Perpassa os desejos, valores e prioridades dos pacientes, suas opções e tratamento, com um consenso final entre equipe de saúde e pessoa afetada, incluindo o indivíduo como ser autônomo e responsável. Concluiu-se que os componentes do TDC ainda não são muito bem sentido na literatura e existem diversas formas de implementar um TDC na prática clínica.
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Objective Previous studies regarding patients' end of life (EOL) preparation have focused mainly on practical tasks, such as advance directives. In this study, we investigate the relational and personal aspects of EOL preparation, using a patient-completed questionnaire, and examine associations with clinician–patient communication (CPC) and other variables.Methods Patients with advanced cancer but with good performance status were recruited from 24 medical oncology clinics, to participate in a cluster-randomised controlled trial of early palliative care intervention. Measures included the Quality of Life at the End of Life preparation for EOL subscale, and measures of CPC, functional status, comorbidity, spiritual well-being and symptom severity. Using chi-squared tests, t-tests and multivariate regression analyses, we examined the variables associated with preparation for EOL. We also examined the frequency distributions of individual EOL preparation items and used logistic regression to examine their associations with adequacy of CPC.ResultsIn the 469 patients, characteristics associated with better EOL preparation were better CPC, older age, living alone, less symptom burden and better spiritual well-being. Thirty-one per cent agreed that they worried ‘quite a bit’ or ‘completely’ about their family's preparation to cope with the future, and 27% agreed that they would be a burden to their family. All preparation items except regrets about life were associated with adequacy of communication.ConclusionsA substantial minority of patients with advanced cancer but with good performance status are concerned about EOL preparation, particularly in relation to their families. Better CPC may help patients prepare not only practically but also personally and socially in relation to the dying process and the welfare of their families. Copyright © 2011 John Wiley & Sons, Ltd.
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The authors tested whether an educational video on the goals of care in advanced cancer (life-prolonging care, basic care, or comfort care) helped patients understand these goals and had an impact on their preferences for resuscitation. A survey of 80 patients with advanced cancer was conducted before and after they viewed an educational video. The outcomes of interest included changes in goals of care preference and knowledge and consistency of preferences with code status. Before viewing the video, 10 patients (13%) preferred life-prolonging care, 24 patients (30%) preferred basic care, 29 patients (36%) preferred comfort care, and 17 patients (21%) were unsure. Preferences did not change after the video, when 9 patients (11%) chose life-prolonging care, 28 patients (35%) chose basic care, 29 patients (36%) chose comfort care, and, 14 patients (18%) were unsure (P = .28). Compared with baseline, after the video presentation, more patients did not want cardiopulmonary resuscitation (CPR) (71% vs 62%; P = .03) or ventilation (80% vs 67%; P = .008). Knowledge about goals of care and likelihood of resuscitation increased after the video (P < .001). Of the patients who did not want CPR or ventilation after the video augmentation, only 4 patients (5%) had a documented do-not-resuscitate order in their medical record (kappa statistic, -0.01; 95% confidence interval, -0.06 to 0.04). Acceptability of the video was high. Patients with advanced cancer did not change care preferences after viewing the video, but fewer wanted CPR or ventilation. Documented code status was inconsistent with patient preferences. Patients were more knowledgeable after the video, reported that the video was acceptable, and said they would recommend it to others. The current results indicated that this type of video may enable patients to visualize "goals of care," enriching patient understanding of worsening health states and better informing decision making.
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Patients with incurable illness experience considerable physical and psychological distress, which negatively impacts their quality of life. Palliative care clinicians primarily seek to alleviate suffering, enhance coping with symptoms, and enable informed decision making. In this article, we review the efficacy of various palliative care interventions to improve patients' quality of life, physical and psychological symptoms, satisfaction with care, family caregiver outcomes, health-service utilization, and quality of end-of-life care. We have identified 22 randomized studies that evaluate the efficacy of various palliative care interventions. Palliative care research has been hampered by methodological challenges related to attrition and missing data due to progressive illness and death. In addition, interventions to date have varied widely in the focus and extent of services, with only eight studies entailing direct clinical care by palliative care specialists, making comparisons across trials challenging. Despite these limitations, accumulating evidence shows that palliative care interventions do improve patients' quality of life, satisfaction with care, and end-of-life outcomes. Five of seven studies which examined quality of life as a primary outcome reported a statistically significant difference favoring the palliative care intervention. Ten studies examined patient and/or family caregiver satisfaction with care, and seven of these reported greater satisfaction with palliative care intervention. However, data are lacking to support the benefit of palliative interventions for reducing patients' physical and psychological symptoms. We conclude the review by discussing the major obstacles and future directions in evaluating and implementing standardized palliative care interventions.
Article
Understanding of prognosis among terminally ill patients impacts medical decision making. The aims of this study were to explore perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer (NSCLC) and to examine the effect of early palliative care on these views over time. Patients with newly diagnosed metastatic NSCLC were randomly assigned to receive either early palliative care integrated with standard oncology care or standard oncology care alone. Participants completed baseline and longitudinal assessments of their perceptions of prognosis and the goals of cancer therapy over a 6-month period. We enrolled 151 participants on the study. Despite having terminal cancer, one third of patients (46 of 145 patients) reported that their cancer was curable at baseline, and a majority (86 of 124 patients) endorsed getting rid of all of the cancer as a goal of therapy. Baseline perceptions of prognosis (ie, curability) and goals of therapy did not differ significantly between study arms. A greater percentage of patients assigned to early palliative care retained or developed an accurate assessment of their prognosis over time (82.5% v 59.6%; P = .02) compared with those receiving standard care. Patients receiving early palliative care who reported an accurate perception of their prognosis were less likely to receive intravenous chemotherapy near the end of life (9.4% v 50%; P = .02). Many patients with newly diagnosed metastatic NSCLC hold inaccurate perceptions of their prognoses. Early palliative care significantly improves patient understanding of prognosis over time, which may impact decision making about care near the end of life.