Running head: END-OF-LIFE CARE

1

Improving End-of-Life Care in the Primary Care Setting: Implementation of the Serious Illness
Care Program
Rey Jericoh Manalese
Arizona State University

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Abstract

Early and effective end-of-life care are associated with increased quality of life for those
patients who may be nearing the end-of-life (EOL). However, evidence suggests that most nonpalliative healthcare providers lack the skills and confidence to initiate EOL conversations.
Consequently, about 70% of Americans would prefer to die at home with their families, yet only
25% die according to their wishes (State of California Department of Justice, n.d). In alignment
with the Peaceful End of Life Theory, the purpose of this evidence-based project is to increase
primary healthcare providers’ level of skills and confidence in end-of-life discussions. This
project utilized a pre and post study design. A total of 11 participants were recruited using
convenience sampling from three primary care clinics in Phoenix, Arizona. Due to the small
sample size and assumption of a non-normal distribution of the data, Wilcoxon Signed Ranks
test and Pearson correlation coefficient were used for statistical analysis. There were clinical and
statistical significant improvements in the EOL knowledge of the participants after the
implementation of the two-and-a-half-hour Serious Illness Care Program (Z = -2.950, p = .003)
with a large effect size (r = -0.62). The project evaluation also demonstrated that most
participants deemed that the intervention was effective. A brief and systematic education session,
such as the SICP can be utilized to improve non-palliative healthcare providers’ skills in having
more and effective end-of-life conversations.
Keyword: End-of-life care, advance care planning, palliative care, primary care providers,
healthcare providers

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Improving End-of-Life Care in the Primary Care Setting
End-of-life (EOL) care is essential to meet patients’ preference in care as they approach
the final days of their lives. For non-palliative healthcare personnel, primary care providers,
including Registered Nurses (RN), Social Workers (SW), Nurse Practitioners (NP), Physician
Assistants (PA) and Physicians are in the forefront to initiate EOL conversations due to the
trusted and lasting relationships that they have with their patients. However, despite this integral
position of the primary care clinicians to discuss EOL care with their patients, many fail to do so.
According to Periyakoil, Neri, and Kraemer (2015), the population of older adults will be about
71 million by the year of 2030 and approximately 80% of this population will suffer from
chronic illnesses before dying. With the growing number of the population who may need
palliative care, there has been an increased effort to improve the knowledge and skills of nonpalliative healthcare providers in EOL and palliative care.
Problem Statement
The impact of one’s death can affect multiple people including the patient’s family and
friends. Evidence suggests that with proper EOL care planning, such as discussion of wishes,
beliefs, and goals, patients are more likely to have a better quality of life, receive the care that
they want, and have a more peaceful death (Nyatanga. 2014; Lakin et al., 2016). However, in
today’s modern healthcare industry, EOL care has been given little attention, and the likelihood
of dying in the hospitals rather than according to the patient’s preferences continue to rise
(Giovanni, 2012). In the United States, Medicare beneficiaries in some western and northwestern
states had about 20% chance of dying in the hospital, while southern and eastern states were
estimated to be more than 50% (Giovanni, 2012). The National Institutes of Health (2010)
reported that more than 20% of all United States deaths occur in or shortly after an ICU stay,
which also leads to family members experiencing stress, fear, depression, and anxiety.

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The types of care patients receive toward the end of life in inpatient-based hospitals are
also causing a burden to the healthcare economy. Patients who did not have EOL care
discussions with their healthcare providers are more likely to utilize intensive care units and
emergency room visits compared to patients who had early EOL planning (Kim & Tarn, 2016).
The Medicare Payment Advisory Commission (MedPAC) reported that about a quarter of the
Medicare budget is spent on members who are in the last year of their life, and 40% of that is in
the last 30 days of their lives (Giovanni, 2012). Healthcare costs toward the end of life and lack
of proper EOL planning could increase as the number of older Americans is predicted to reach
72.2 million by 2050 (Giovanni, 2012). In the state of Arizona alone, the entire population is
expected to grow from almost 6.5 million in 2010 to 11.5 million in 2050. The number of
Arizonans aged 65 and above is expected to increase 174% from nearly 900 thousand in 2010 to
2.5 million in 2050 (Arizona Department of Health Services, n.d.).
The Centers for Disease Control and Prevention (2014) reported that only about one-third
of adults have an advance directive that expresses their wishes for EOL care. In addition, most
primary care providers receive inadequate or no training in communicating goals of care for
patients who may be nearing the end of life or are seriously ill (Lakin et al., 2016). The Agency
for Healthcare Research and Quality reported that only 12% of patients with advance directives
had received input from their physicians in its development (As cited in Kirk, 2010).
In 1997, the Institute of Medicine (IOM) published a report, which discussed the
problems and concerns of the community in caring for people who are nearing end of life. In the
report, the IOM recognized the vast need to improve the quality of EOL communications with
both the patients and their families. The IOM mentioned that the education of many healthcare

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providers does not equip clinicians with enough knowledge and skills in palliative or EOL care
to effectively care for patients who may benefit with EOL discussions.
Furthermore, the pragmatic practice in EOL care is also globally recognized. The World
Health Organization (2017) estimated that there are 40 million people in need of palliative care
and only about 14% received some type of palliative care services. In Europe, a qualitative focus
study conducted by Selman et al., (2017), which included 28 healthcare providers, exposed the
gap in the end-of-life care knowledge of general practitioners. According to the study, most
general practitioners perceive end-of-life care to be both clinically and emotionally challenging.
In the present time, little has been done, as many non-palliative healthcare providers are
still unsure of when and how to discuss EOL care. In recent polls generated by the California
Health Care Foundation (CHCF) (2016), which includes 762 primary care and various specialist
physicians, 46% reported that they had experienced significant barriers to having EOL
discussions. The national government of the United States also acknowledged the poor quality of
EOL care in the country and started to view it as a public health problem. As a response, Center
for Medicare and Medicaid Services (CMS) made it possible for clinicians to receive
reimbursement when providing advance care planning or EOL discussions with the patient
(California Health Care Foundation, 2016). Despite the addition of the reimbursement for
advance care planning, only 14% have billed Medicare for advance care planning conversation
since its inclusion on January 1, 2016 (California Health Care Foundation, 2016). With the
mounting evidence regarding the gap in knowledge of the primary care providers in EOL
communication, there is a need to improve the knowledge, skills, and comfort with EOL
discussions among primary healthcare providers (Reed et al., 2017; Lakin et al., 2016; Selman et
al., 2017).

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Purpose and Rationale

In 1995, a landmark study of end-of-life care was conducted to measure the quality of life
of patients nearing the end of life after the implementation of an improved EOL care. In phase
one of the study, the analysis of the multisite delivery of EOL care revealed a significant gap in
communication and frequency of life-supporting treatment (Connors et al., 1995). Therefore, it is
historically known that poor discussions about EOL care resulted in unwanted treatments and
poor quality of life. Thus, the purpose of this project is to discuss the significance of the problem
including the external and internal evidence regarding EOL care and implement an evidencebased intervention that could improve EOL communications.
Background and Significance
Primary Care Providers
The need for all healthcare providers to deliver EOL or palliative care has come into a
view as patients’ needs are outweighing the number of palliative providers. The primary care
providers have important role in delivering EOL care (Kim & Tarn, 2016). In addition, primary
care providers are in the perfect position to initiate EOL discussions as they have long-standing
relationships with their patients and may know more about the wishes and desire of their patients
(Kim & Tarn, 2016). However, the frequency of EOL conversations is lacking according to the
literature. Kale, Ornstein, Smith, and Kelley (2016) suggested in their retrospective study (N=
1993) that a vast majority of older adults enrolled in Medicare had not discussed their
preferences regarding EOL. Forty percent of this nationally representative sample of Medicare
members reported that they have not discussed any EOL planning.
Little is known about the engagement of the public in EOL discussions. However,
increasing frequency and discussions of EOL plans and wishes have been associated with care

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that is consistent with patients’ values and beliefs. Kim and Tarn (2016) conducted a systematic
review which concluded that when primary care providers are involved in EOL care, there is a
decrease incidence of deaths in the hospital, more deaths at home or hospice care, better death
preparation, and better symptom control before dying. In another systematic review, Green,
Knight, Gott, Barclay, and White (2018) reported that patients who are treated by specialists are
being reassured and reverted back to their general practitioners for palliative and EOL care.
Many patients view general practitioners or primary care providers to be well-placed to provide
palliative care; therefore, it is critical that primary care providers have the knowledge and
confidence to engage in EOL discussions.
End of Life Knowledge
One widely known theme in the literature is the gap in the knowledge and skills of nonpalliative healthcare providers in the specific approach to EOL discussions. Nedjat-Haiem and
colleagues (2017) reported that both medical and non-medical providers, such as nurses, social
workers, chaplain, and physicians are unclear about their role and failed to clearly describe their
responsibility in providing EOL care. Moreover, the model of education of most healthcare
providers do not sufficiently emphasize EOL care. As a result, non-palliative clinicians feel
unprepared to discuss EOL care with their patients (Selman et al., 2017; Gillan, Van Der Riet,
Jeong, 2014). In the systemic review conducted by Gillan, Van Der Riet, and Jeong (2014), the
finding suggests that most undergraduate nursing education are not adequately preparing
students to provide EOL care. Nursing students who are involved in the study reported that they
feel unprepared to engage in communication regarding EOL discussions. The current nursing
education is lacking content and depth in how to care for patients who are nearing the end of life
(Gillan, Van Der Riet, & Jeong, 2014). Selman et al. (2017) also demonstrated the lack of

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confidence and comfort of general practitioners in their qualitative focus group study. Majority
of the participants in the study discern the educational needs in EOL care. Also, Dunlay et al.
(2015), conducted a multisite clinician survey study which involved physicians, nurse
practitioners, and physician assistants who work with patients with heart failure suggested that
there are variabilities on how providers approach EOL discussion. It was found that cardiologists
and heart failure specialists are less likely to engage in EOL conversation as they felt that this is
the responsibility of the primary care providers. In fact, Kim and Tarn (2016) demonstrated in
their study that involvement of primary care providers in EOL care resulted in decrease in
hospital visits, decrease in healthcare costs, and improvement in communication.
Barriers
According to the literature, different barriers exist in having effective EOL discussions
between primary care clinicians and patients. In fact, a mixed-method study of multi-specialty
doctors caring for seriously ill patients discussed the different barriers in initiating EOL
conversations (Periyakoil, Neri, & Kraemer, 2015). The study demonstrated the six primary
barriers and ranked them in order; (1) language and medical interpretation issues, (2) patient or
family religious and spiritual beliefs about dying, (3) providers’ ignorance of patient’s cultural
beliefs, values, and practice, (4) cultural differences, (5) patients’ limited health literacy, (6) and
patients’ mistrust of doctors and the healthcare system. Moreover, 1032 doctors or 99.9% of the
participants acknowledged some type of barriers in conducting EOL conversations. Pippa (2017)
noted that other well-documented reasons for the lack of palliative care discussions are fear of
upsetting the patients, seeing referral as an admission of failure, and not understanding the
benefits of palliative or EOL care.
Education

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The Study to Understand Prognoses and Preferences for Outcomes and Risks of
Treatments (SUPPORT) study, which is the landmark study for the EOL care research,
randomized seriously ill patients that were hospitalized to an intervention arm that facilitated
increased patient-clinician communication (Fakhri, 2016). The study found no significant effect
after implementing the intervention. The study set the foundation for various initiatives to
improve communications between patients and healthcare providers.
Nevis (2014) analyzed the effectiveness of various educational interventions for
healthcare providers in improving EOL care. Although the study concluded that there was no
significant improvement in the quality of life of the patients, it showed improve symptom control
for patients and quality of life for informal caregivers. The study suggests that there is a need to
develop a more effective and structured communication approach to EOL care. Moreover, Lakin
et al. (2017) implemented the Serious Illness Care Program (SICP) aimed to improve access to
high-quality communication for patients with serious illnesses. The focus of the SICP is to
promote conversations that emphasize what is important for the patients. The clinics and
clinicians selected for the intervention arm of the study reported that the training is highly
effective and engaged in a higher number of EOL care discussions (72.7%) compared to the
comparison clinic (39.6%). The types of participants in both the intervention and comparison
groups were physicians, nurse coordinators, and social workers. The finding from the study
suggests that a brief and structured educational program can increase the frequency of discussion
and quality of EOL care in the primary care clinics.
Furthermore, the lack of knowledge and confidence of nurses in EOL care led to a
descriptive cross-sectional study, which aimed to analyze the pre and post assessment knowledge
in palliative care of senior nursing students (Glover et al., 2017). In the study, a two-day course

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derived from the End-of-Life Nursing Education Consortium (ELNEC) program was utilized to
improve the knowledge of nursing students. Although most of the students deemed the program
long, the post response from the students indicated improved knowledge about EOL care and
communication skills with the dying patients. The study suggested that educating nurses about
EOL care can positively impact their knowledge and approach to palliative care.
Internal Evidence
In Arizona, Governor Ducey signed the Advance Directive Bill to form a process that
allows healthcare providers to have access to the state’s Advance Directive Registry on or before
December 31, 2018 (Arizona Hospital and Healthcare Association, 2017). The goal was to
optimize communication, decrease unnecessary and unwanted interventions, and respect the
wishes of patients towards the EOL. The Arizona Hospital and Healthcare Association (AzHHA)
is one of the supporters of this policy, and the organization was awarded one million dollars of
grant money from the Lura Lovell foundation to improve EOL care in Arizona. The increasing
efforts in Arizona to promote advance care planning and effective EOL care suggests that there
may be a need to improve the education of non-palliative clinicians to assist in better EOL
communication. In addition, EOL care discussions in various primary care clinics in Arizona still
has low occurrences. This preliminary inquiry about the background and significance of EOL
care has led to the clinically relevant PICO question, “Among primary care providers, how does
implementation of Serious Illness Care Program compare to no intervention influences primary
care providers’ skills in discussing EOL care?”
Search Process
A comprehensive search of the literature was conducted to understand and appraise
different studies related to EOL care in the primary care setting, barriers in EOL discussions, and

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effectiveness of an educational intervention in improving EOL care. The databases included in
the search were PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL),
and Academic Search Premier. Various studies and systematic reviews were determined by
utilizing different combinations of keywords and Medical Subject Headings (MeSH) terms. The
keywords and phrases included in the comprehensive search were the following: “end-of-life
care,” “palliative care,” “advance care planning,” “terminal care,” “healthcare provider,”
“primary care,” “nurse,” “social worker,” “barriers,” “knowledge,” “education,” “training,”
“serious illness communication,” “communication,” and “frequency.” The initial search of the
keywords “end-of-life care,” “advance care planning,” “palliative care,” or “terminal care.” The
initial search yielded 82,507 results in PubMed (Appendix A), 1,940 in CINAHL (Appendix B),
and 1,093 in Academic Search Premier (Appendix C). By setting limits to publication date
ranging from 2012 to 2018, applying MeSH terms, Boolean/phrase, such as “primary care,”
“healthcare providers,” “training,” “knowledge,” or “barriers,” the overall search yielded 188
studies from PubMed, 132 studies from CINAHL, and 201 studies from Academic Search
Premier.
The inclusion criteria consisted of studies in English text, addressed EOL care or
discussions, focused on adult patients who were nearing EOL, and focused on various healthcare
providers. The exclusion criteria included studies involving pediatric population and studies that
were not written in English language.
Critical Appraisal and Synthesis
The search yielded 20 articles and each article was rated according to the strength of
evidence and overall quality of the study using the Rapid Critical Appraisal (RCA) checklist.
After reviewing each study, ten articles were included in this review. Three qualitative studies,

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two mixed-method study, one retrospective study, one prospective study, and three randomized
controlled trial (RCT) studies were used in this review (Appendix F). Although the RCT studies
utilized measuring tools that are well known in the field of research, none of the studies listed
information about the specificities and sensitivities of the measuring instruments. Also, one RCT
study that tested the effectiveness of SICP lack the detailed information about the methodology,
as only preliminary information was given. The three qualitative studies and two mixed-method
studies explored the role and insights of various non-palliative healthcare providers in EOL care.
The retrospective cohort study demonstrated the effectiveness of a brief educational intervention
in improving EOL care communication. In addition to the RCT, the prospective implementation
trial that used SICP as the intervention added quantifiable data regarding the effectiveness of a
brief education intervention in improving quality of EOL conversations. Also, the three RCT and
one mixed-method study provided more quantifiable information about the effectiveness of
various EOL education interventions for healthcare providers. The Cronbach’s alpha was
exclusively searched to measure the internal consistency of the various tools used in the RCT
studies. Most Cronbach’s alpha from RCT studies produced acceptable results as shown in the
Appendix F of this paper.
The reliability and validity for RCTs were assumed based on statistically significant
results and Cronbach’s alpha score of the studies. Although not all of the desired outcome
measurement was achieved, most of the measurement tools used in the studies produced
statistically significant results that pertains to their own respective interventions. Lakin et al.
(2017) used Rao-Scott chi-square test and t-tests for various descriptive and outcome variables,
which also yielded statistically significant results. In addition, a large clinical significance was
seen across all the studies and most produced statistically significant results (Appendix F). The

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three qualitative studies provided an appropriate choice for methodology including sampling,
data analysis, and validity of the results (Appendix F). There was minimal bias across all the
studies.
There was a moderate degree of homogeneity identified across all the studies in regard to
the demographics, interventions, and variances. The majority of the participants were registered
nurses, physicians, and nurse practitioners. Most healthcare provider participants were between
the age of 40 and 70. All patients involved in the studies had chronic illnesses and may benefit
from EOL conversations. All education interventions produced clinically significant outcomes in
the knowledge and frequency of EOL communications among non-palliative healthcare
providers. Also, there was a mild degree of heterogeneity in regard to the focus of outcomes
studied. The three RCT studies measured the effect of EOL discussions in regard to the quality
of life of patients and their families, while other studies were focused on the effect of the
intervention to the healthcare providers.
Conclusion
Overall, the most common theme from the literature was the inadequate knowledge of
many healthcare providers in EOL discussions and infrequency of EOL communications in the
primary healthcare setting. A brief, structured, and interactive educational tool may provide
healthcare providers with skills that can improve their confidence in initiating EOL care
discussions. The Serious Illness Care Program (SICP) is a brief educational intervention that can
improve knowledge of healthcare providers and occurrences of EOL communication (Appendix
F). Lakin and colleague’s (2017) prospective study demonstrated that SICP, a two-and-a-halfhour educational program that involves role playing, was statistically effective in increasing
frequency and access to high quality EOL discussions. Paladino and colleagues (2016) further

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demonstrated with their cluster-randomized controlled trial that SICP may be a scalable
intervention to promote early, better, and more EOL conversations. Overall, this literature review
suggests that SICP is a brief and cost-effective intervention that may improve EOL care in the
community, especially in the primary care, thus increasing patients’ quality of life and promoting
more peaceful EOL experience.
Theoretical Framework
The theoretical framework utilized for this study was the middle-range theory called the
Peaceful End-of-Life (PEOL) (Ruland & Moore, 1998). PEOL theory focuses on contributing a
peaceful and meaningful life towards the EOL for patients and their families have (Ruland &
Moore, 1998). Ruland and Moore (1998) suggested that caring for terminally ill patients is
complex, and it requires knowledge not only of controlling symptoms and managing pain, but
compassion and awareness to the patients’ beliefs and wishes. There are five main concepts
proposed in the Peaceful End-of-Life theory: not being in pain, experience comfort, experience
dignity and respect, being at peace, and closeness to significant others (Appendix D). These
concepts suggest that the goal of end-of-life care should not be about aggressive treatments or
optimizing treatment plans for curative purposes, but rather should focus on providing comfort
for the patient while honoring his or her values. The central goal of this theory is to adjust
treatment based on comfort measures, enhanced quality of life, and ultimately promote a
peaceful death (Ruland & Moore, 1998). Ruland and Moore (1998) also suggested that nurses
have the responsibility to facilitate the participation of the patient’s families to promote family
closeness and emotional support, which leads to experience of being at peace.
The five concepts of the Peaceful End-of-Life theory can guide nurses in selecting
interventions that will lessen the suffering and help the patients to have a meaningful end-of-life

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experience (Appendix D). The PEOL theoretical framework may remind healthcare providers
that the focus of treatment should always be based on the patient’s goals and wishes thus,
making EOL experience more peaceful for the patients and their families.
Innovation Model
The Rosswurm and Larrabee’s Model for Evidence Based Practice Change was adopted
to guide this project. The Rosswurm and Larrabee’s model comprises of six stages: assess need
for change, link problem with interventions and outcomes, synthesize best evidence, design a
change in practice, implement and evaluate the practice change, and integrate and maintain the
practice change (Appendix E). The first stage is to assess the need for change in practice, which
involves identification of internal and external data to substantiate the need for practice change.
An exhaustive search and interview of stakeholders led to the comparison of internal and
external data of current EOL practice which also resulted to the identification of the problem.
Second, linking the problem with the best intervention based on evidence is critical for this
model. In this project, inclusion and exclusion criteria was set to achieve the best possible
evidence in the development of the PICOT and project intervention. Third, synthesizing the best
evidence by critically analyzing various studies with the use of rapid critical appraisal tool to
refine selected interventions and studies was used in this project. Critically appraising different
studies was performed to determine whether the strength of intervention or study supports a
change in practice. Fourth, it is critical to define the practice change by designing the
implementation plan and evaluation strategies. The synthesis of evidence revealed that the use of
various educational interventions to increase confidence and knowledge of healthcare providers
in EOL care discussions was statistically effective. The fifth step is implementing the chosen
intervention with the use of evidence-based implementation of the project, evaluating the

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outcome, and developing conclusions and recommendations for future practice. The
recommended practice change for this project is to implement a brief education training for
healthcare providers that may improve the quality and frequency of EOL discussions in the
primary care setting. The final step is integrating and maintaining practice change. The adoption
of the Rosswurm and Larrabee’s model provided this project with a systematic step-by-step
approach for developing and implementing an evidence-based practice change (Appendix E).
Brief Plan for Applying Evidence to Practice
Primary care providers play a vital role in implementing EOL care planning. Early and
effective EOL discussions have been associated with decrease fear in dying and promote a
peaceful death for patients who may be nearing the EOL. However, the literature suggests that
many primary care providers are confused about their roles and do not have the knowledge to
initiate EOL conversations. The stakeholders affected by this problem are nurses, nurse
practitioners, physician assistants, physicians, social workers, patients, and families. The
potential data to be collected for this project is the pre and post information regarding the
healthcare providers’ knowledge or skills about EOL care communication. Moreover, a survey
was given to the participants to evaluate the effectiveness of the course content and components
of the training. The intervention selected for this project was the Serious Illness Care program
(SICP), which is a two-and-a-half-hour educational program that may equip providers with skills
and system-level support needed to carry on a comprehensive goal of care conversations. This
evidence-based project was conducted in collaboration with the AzHHA. AzHHA provided all
coaching resources and trainings necessary to properly conduct the two-and-a-half-hour
workshop to non-palliative healthcare providers. This project was inspired by the AzHHA and
their goal to improve end of life care for Arizonans. Change in the skills and knowledge of

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primary healthcare providers in EOL care were measured using a self-report questionnaire and
recorded for comparison to the baseline score. All participants were also given a satisfaction
survey to assess the effectiveness of the SICP.
Methods
Design
The study design for this project was a pre and post-test design, which was based on the
innovation model of the Rosswurm and Larrabee’s Model for Evidence Based Practice Change.
The theoretical framework used for this project is the Peaceful End-of-Life theory by Ruland and
Moore.
Ethics
The project design was submitted and approved by the Arizona State University
Institutional Review Board (IRB) committee. In keeping with the university IRB requirements,
all personnel who had access to the data have been formally trained in the protection of human
subjects before working with the participants or having access to the data. The risks associated
with breaches of confidentiality or anonymity were minimized by using anonymous pretest and
posttest survey data which was saved and managed in a secure computer accessible only by the
author. Although the proposed project had minimal potential for adverse events, the author
monitored participants by carefully listening and observing the communication between the
author and participants.
Sample and Sampling
A sample of 11 participants were recruited from three different primary care clinics in
Phoenix, Arizona. Convenience sampling was utilized for this project. The inclusion criteria
were adults aged 18 and above who (1) identify themselves as primary care providers, such as

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registered nurses, nurse practitioners, physician assistants, physicians, licensed social workers (2)
are able to read, write and understand English; (3) agree to provide consent. Participants who did
not meet all criteria or declined participation were excluded.
Procedure
Participants were identified in collaboration with primary care providers and mentors
from Arizona Hospital and Healthcare Association. The author visited three primary care clinics
and handed recruitment flyers to the clinic managers and clinicians. Clinicians who were
interested to participate contacted the author via the information provided on the flyer. The
author also contacted potential participants identified and referred by other primary care
providers. For the initial meeting with participants, the author explained the purpose of the
project, procedure, and potential risks and benefits of participating in the project. Primary care
providers who gave consent and participated were enrolled.
Eligible participants who gave consent were invited to attend in a two-and-a-half-hour
SICP educational presentation held in locations that were appropriate for implementation of the
project. Project implementation sites included conference room at the Arizona Hospital and
Healthcare Association office, public libraries, and coffee shops. In the beginning of the
presentation, a demographic questionnaire and pretest survey or baseline assessment of each
provider’s current knowledge and confidence in EOL conversation were gathered using the
survey adapted from the Ariadne Labs. The education presentation included a PowerPoint
presentation, watching a video that discuss different ways of communicating EOL care, role
playing, explaining how to use the Serious Illness Care Guide, and discussing case studies
towards the end. Participants were given opportunities to ask questions during the presentation.
The pretests were brief, anonymous, and were linked by a nickname that was created by

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participants in the beginning of the presentation. A posttest survey which is similar to the pretest
was given to the participants right after the presentation and anonymously linked by a nickname
created by participants during the pretest. A $10 gift card from Starbucks was given to anyone
who participated in the project. The source of funding came from the personal funds of the
author.
Outcome Measures
Sociodemographic information was collected using a form created by this author. At
baseline or pre-data assessment, gender, profession, age, and zip code were recorded in the
demographic survey. The pre and post survey tool utilized for the project was the
Communication in Serious Illness Training Evaluation which was adopted from the Ariadne
Labs. The Communication in Serious Illness Training Evaluation consisted of six survey sections
(A to F):
1. Section A – course content evaluation.
2. Section B – course training evaluation.
3. Section C – skills self-assessment.
4. Section D – evaluation of trainer.
5. Section E – open-ended evaluation questions.
6. Section F – demographic survey.
This project adopted two sections from the instrument, which were section A and section C.
Section C contains seven questions that were based on: (1) setting up the conversation, (2)
assessing the patient’s illness understanding, (3) sharing prognosis, (4) acknowledging and
responding to patient’s emotions, (5) exploring key topics and goals of the patient, (6) inquiring
about fears and worries for future care, and (7) ability to speak less than 50% of the time

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(Ariadne Labs, n.d.). A five-point Likert-type scale was used to facilitate data entry and
statistical analysis. Each question is in a format of five possible answers ranging from 1 (not
skilled at all) to 5 (Extremely skilled). All seven-item scores were added to yield a summary
score of 5 to 35 points; a lower score indicated low skills and a higher score indicated high skills
in EOL discussions.
A project evaluation survey was also included during the posttest implementation of the
SICP to evaluate the effectiveness and impact of the education presentation. The project
evaluation survey was composed of seven questions with a four-point Likert-type scale ranging
from 4 (fully understand) to 1 (Not at all).
Validity and Reliability of Instruments
The Communication in Serious Illness Training Evaluation survey was developed in the
U.S. by Ariadne Labs to assess attitudes, confidence, and acceptability of the SICP (Bernacki et
al., 2015). The survey was created and designed by a team of palliative care experts at Ariadne
Labs to complement the implementation of the SICP (Ariadne Labs, n.d.). Ariadne Labs is a
joint center of Brigham and Women’s Hospital and the Harvard School of Public Health which
aims to promote innovation that will foster better care and optimal health in the U.S. (Ariadne
Labs, n.d.). The evaluation survey included pre and post intervention self-assessment level of
skill questionnaire. While this survey had not undergone validity and reliability testing, the
survey had been used in various research that utilized SICP as the primary intervention (Bernacki
et al., 2015). At this time, there is not enough evidence in the literature to suggest the Cronbach’s
alpha for this survey. The measurable outcome for this project included provider’s skills and
attitudes in EOL communication. This outcome may provide insights to the effectiveness of

END-OF-LIFE CARE

21

SICP in improving clinicians’ skills in discussing EOL care, thus contributing to future quality
improvement in various healthcare settings, most especially in the primary care setting.
Data Analysis and Data Collection
SPSS was used for analysis and coding of data. Statistic mentor collaborated with the
author in the selection of the appropriate statistical analysis. Descriptive statistical analysis was
utilized to describe the sample characteristics and examine the distribution of variables. Also,
due to the small sample size and the assumption of a non-normal distribution, a non-parametric
test was used. Wilcoxon Signed-Rank test was utilized to compare the pretest and posttest data,
while Pearson correlation coefficient was used to calculate the effect size where small effect size
is 0.1, medium effect size is 0.3, and large effect size is 0.8.
Proposed Budget
The main costs for this project came from the printed materials and gift cards handed to
the participants as a sign of appreciation for their attendance. A $10 gift card from Starbucks was
given to the participants. The source of the fund came from the personal funds of the author. The
estimated total costs to implement the project was $130.
Results
Sample Characteristics
A total number of 11 participants participated in the project which composed of 63.6%
female and 36.4% male. About 63% of the participants identified themselves as
White/Caucasian. The participants identified their area of discipline as nurse practitioners
(54.5%), licensed social workers (27.3%), and registered nurses (18.2%). The age range of the
participants was from age 30-39 (45.5%), age 40-49 (36.3%), and age 18-29 (18.2%). There was

END-OF-LIFE CARE

22

also a wide geographical variation among all the participants, as there was only two identical zip
codes noted in the descriptive data.
Perceived Skills in End-of-Life Communication/Outcome variable
All seven questions from the pretest and posttest surveys showed statically significant
results. The mean pre-intervention total score for all seven questions was 21.73 (SD = 3.58). The
mean post-intervention total score for all seven questions was 27.36 (SD = 3.32). The Wilcoxon
Signed-Rank test showed that a two-and-a-half-hour SICP education intervention elicited a
statistically significant change in improving EOL communication skills of primary care
providers (Z = -2.950, p = .003) with a large effect size (r = -0.62) which also suggested large
clinical significance. Each question was also independently evaluated to show specific statistical
results.
1. Setup a serious illness conversation – The mean pre-intervention score for this question
was 2.91 (SD = 0.70) (1 = not at all skilled, 2 = somewhat skilled, 3 = skilled, 4 = very
skilled, and 5 = extremely skilled). The mean post intervention score for this question
was 3.82 (SD = 0.50). Wilcoxon Signed Ranks test indicated that the change from pretest to post-test scores (Z = -2.887, p=0.004) was statistically significant.
2. Assess patient understanding of their illness - The mean pre-intervention score for this
question was 3.27 (SD = 0.64) (1 = not at all skilled, 2 = somewhat skilled, 3 = skilled, 4
= very skilled, and 5 = extremely skilled). The mean post intervention score for this
question was 3.91 (SD = 0.539). Wilcoxon Signed Ranks test indicated that the change
from pre-test to post-test scores (Z = -2.333, p=0.020) was statistically significant.
3. Share prognosis - The mean pre-intervention score for this question was 3.27 (SD = 0.90)
(1 = not at all skilled, 2 = somewhat skilled, 3 = skilled, 4 = very skilled, and 5 =

END-OF-LIFE CARE

23

extremely skilled). The mean post intervention score for this question was 3.82 (SD =
0.75). Wilcoxon Signed Ranks test indicated that the change from pre-test to post-test
scores (Z = -2.449, p=0.014) was statistically significant.
4. Acknowledge and respond to patient emotion - The mean pre-intervention score for this
question was 3.18 (SD = 0.60) (1 = not at all skilled, 2 = somewhat skilled, 3 = skilled, 4
= very skilled, and 5 = extremely skilled). The mean post intervention score for this
question is 4.18 (SD = 0.60). Wilcoxon Signed Ranks test indicated that the change from
pre-test to post-test scores (Z = -2.810, p=0.005) was statistically significant.
5.

Explore goals and inquire about fears and worries for future care - The mean preintervention score for this question was 3.09 (SD = 0.83) (1 = not at all skilled, 2 =
somewhat skilled, 3 = skilled, 4 = very skilled, and 5 = extremely skilled). The mean post
intervention score for this question was 4.18 (SD = 0.60). Wilcoxon Signed Ranks test
indicated that the change from pre-test to post-test scores (Z = -2.111, p=0.035) was
statistically significant.

6. Explore views on tradeoffs and inquire about views on critical abilities - The mean preintervention score for this question was 2.64 (SD = 0.67) (1 = not at all skilled, 2 =
somewhat skilled, 3 = skilled, 4 = very skilled, and 5 = extremely skilled). The mean post
intervention score for this question was 3.64 (SD = 0.67). Wilcoxon Signed Ranks test
indicated that the change from pre-test to post-test scores (Z = -2.810, p=0.005) was
statistically significant.
7. Speak <50% of the time - The mean pre-intervention score for this question was 3.36 (SD
= 0.92) (1 = not at all skilled, 2 = somewhat skilled, 3 = skilled, 4 = very skilled, and 5 =
extremely skilled). The mean post intervention score for this question was 4.27 (SD =

END-OF-LIFE CARE

24

0.78). Wilcoxon Signed Ranks test indicated that the change from pre-test to post-test
scores (Z = -2.428, p=0.015) was statistically significant.
Project Evaluation
All participants responded to the project evaluation survey which consisted of seven
questions with scores ranging from 7 (lowest) to 28 (highest). All 11 participants only selected
between 3 (Mostly) and 4 (Fully) from the Likert-type scale (1 – not at all, 2 – somewhat, 3 –
mostly, and 4 – fully). The mean total score of the project evaluation was 26.4 (SD = 1.80). With
that, participants found that the SICP presentation is beneficial and effective.
Discussion
The findings from this project showed that a two-and-a-half-hour education session may
improve the skills of healthcare providers in EOL care discussion. Implementing the SICP in
non-palliative healthcare setting, such as the primary care, can improve skills of clinicians in
delivering EOL care. In addition, the benefit of this project for primary care providers were the
increase in confidence in initiating EOL care conversation and identifying patients who may
benefit from EOL discussions.
Based on the literature, primary care providers are in a better position to start EOL
conversations because of the trusted relationship that they have with their patients. As a result,
one of the potential long-term implications of this project is to improve the quality of life of
patients who are being seen by clinicians who had the SICP training.
This project focused on bringing about a practice-changing knowledge in EOL care. EOL
care that is rooted from the PEOL theory can provide concepts that can be used in different
clinical settings. Also, incorporating the use of an evidence-based model of change could assist
in a successful formulation and implementation of a proposed intervention. The two-and-a-half-

END-OF-LIFE CARE

25

hour SICP can also be implemented in various healthcare settings to provide a systematic impact
to the community.
Findings from this project may be generalized but it should be noted that there wereonly
11 participants for this project. In addition, SICP is meant to be done in a group setting with
more than one participant. This project met with participants and implemented the project in a
one-on-one education setting. As a result, it may affect the generalizability of the findings.
Despite that, a one education session showed statistically significant changes in the skills of the
participants.
Conclusion/Summary
For healthcare providers, as well as for patients and their families, EOL care presents
many challenges. This evidence-based project demonstrated that implementing a short and brief
education session such as the SICP can improve the skills of non-palliative healthcare providers
in end-of-life communication. The literature suggests that early and effective EOL conversations
can benefit both patients and healthcare providers. For patients, early and better EOL care
discussions ensure that their wishes and values are being heard, thus resulting in a better quality
of life. Healthcare providers can foster trust with their patients as they are focusing on the
patients’ goals and priorities. Using the SICP as an educational tool can promote more EOL
conversations, which may also result in reducing unwanted hospitalizations, promoting a
peaceful death, and avoiding confusion about the preferences of care when patients are not able
to make decisions for themselves. The implementation of this project may increase the
confidence and comfort of primary healthcare providers in engaging in EOL care discussions.
Thus, patients who may be nearing the end of life can have earlier and better conversations about
their goals, wishes, and values that will inform their future care

END-OF-LIFE CARE

26
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Appendix A
Databases

Figure 1. PubMed Database

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Appendix B
Databases

Figure 2. Cumulative Index of Nursing and Allied Health Literature (CINAHL) Database

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Appendix C
Databases

Figure 3. Academic Search Premier Database

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Appendix D
Tables and Figures

Figure 4. Peaceful End of Life Theory

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Appendix E
Tables and Figures
Figure 5. Rosswurm and Larrabee Model

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Appendix F
Evaluation Table

Table 1. Evaluation Table: End-of-Life Care

Citation

Conceptua
l
Framewor
k

Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design: QDS/
Purposive
sampling

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

LOE: VI
S: focus on PCN,
Demographic:Age
wide variety of
– 20-30 y/o 4.8%,
locations
Purpose: To
31-40 y/o 28.6%,
W: mostly f, only
DV1:Experience of
DV2: Most
explore the
41-50 y/o 23.8%,
PGS nurses,
providing EOL and
PCNs have
role of nurses
51-60 42.8%
sample bias
ACP
limited training
in providing
Ethnicity NZ
C: Priority should
DV2:Education and
and education in be given to
EOLC to
71.4%, Maori
training EOL care
EOLC
older pts with
14.3%, European
developing the
DV3:Enablers or
LCs
9.5%, Indian 4.8%
palliative care
DV3: PCNs
key barriers in
skills and
Country: NZ
have more time
Setting: Urban and providing EOL care
knowledge of
to spend with
rural areas of NZ
PCNs
Funding: NZ Heart
F: Substantiates
pts than GP,
Foundation and the
the need in
50% feel the
Inclusion: PGS in
Grace Craston
need to hand pts improving
LC
Charitable Trust.
to palliative
knowledge of
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience
Raphael, Deborah,
Waterworth, Susan, &
Gott, Merryn. (2014).
The role of practice
nurses in providing
palliative and end-of-life
care to older patients
with long-term
conditions. International
Journal of Palliative
Nursing, 20(8), 373-379.

Humanisti
c Model

N - 21 PCNs

IV: what is the role
of nurses in
providing EOLC in
pts with LC

SSI by
telephone
and audio
recorded

Qualitative
Thematic
analysis

DV1:There is a
variability in the
involvement of
PCN in EOLC

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Citation

Conceptua
l
Framewor
k

37
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Bias: NR

Sample/Setting
(describe)

Exclusion: NR
Attrition: 0

Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design:
Mixed
Method Study

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

specialists

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
PCNs in EOLC.
PCNs are also
helpful in
increasing the
discussion of EOL

Measurement
Level/Quality of
/
Evidence;
Conceptua
Instrumentati
Major Variables
Decision for
Sample/Setting
Data
Findings/
on
l
Citation
Studied and
practice/
(focus group,
(describe)
Analysis
Themes
Framewor
Their Definitions
application to
1:1, openk
practice/
ended
Generalization
survey)
Mitchell, S., Loew, J.,
Humanisti
N – 516 GPs
IV – Insights into
Online
Data were
DV1-Continuity LOE: VI
Millington-Sanders, C.,
c model
the experience of
questionnaire coded
of care was
S: large sample,
& Dale, J. (2016).
GPs providing
survey with a independen identified as
sample all across
Demographic:
Experience in
Providing end-of-life
EOLC in the
total of 26
tly by two
being of vital
the UK
Purpose: To
general practice:
care in general practice:
community,
questions
researchers
importance in
Free-text
W: lack of
provide
<5 yrs, 79 (15.4%), particularly the
Findings of a national
with
the provision of
GP questionnaire
insight into
5-10 yrs 79
barriers to goodopportunity
data were
EOLC in
demographic
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

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Citation

survey. The British
Journal of General
Practice : The Journal of
the Royal College of
General
Practitioners, 66(650),
E647-53.
Country: UK
Funding: RCGP/Marie
Curie End-of-Life Care
Clinical Priority
Workstream of the
RGCP Clinical
Innovation and Research
Centre
Bias: None

Conceptua
l
Framewor
k

38
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
the experience
of GPs
providing
EOLC in the
community,
particularly
the facilitators
and barriers to
good-quality
care.

Sample/Setting
(describe)

(15.4%), >10 354
(69.1%), not stated
4 (0.8%) = 516
Setting: A webbased national UK
questionnaire
survey circulated
via the RGCP to
GPs.
Inclusion:GPs
Exclusion:NR
Attrition:0

Major Variables
Studied and
Their Definitions

quality care
DV1- Continuity of
care
DV2- Patient and
family factors
DV3- Expertise and
training
DV4- Medical
management.

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)
for free-text

Data
Analysis

coded
using
NVivo 10
software
(version
10)

Findings/
Themes

primary care.
Only 122 out of
492 (24.8%)
responders
stated that they
always had the
chance to
discuss EOLC
wishes with
patients
DV2-Key
factors
concerning
patients and
families
included
opportunity for
care planning
discussions

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
information, use of
questionnaire as
instrumentation
C: there is a
challenge in
identifying pts
who are in need of
palliative care,
ongoing need for
training or
education for PC
providers.
F: Need for more
effective
communication
and training for
GPs to have better
EOLC in the
community.

DV3-GPs, 19
out of 513
(3.7%) stated
that they had
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

39
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

had no training
in the delivery
of EOLC, and
112 out of 513
(21.8%) stated
they had
received
inadequate
training.
Adequate
training was
reported by 321
out of 513
(62.6%)
responders. The
remaining 61
participants
(11.9%)
answered ‘other’
to this question
and provided
free-text details,
highlighting
particularly the
need to actively
seek out training
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Citation

Conceptua
l
Framewor
k

Conceptua
l
Framewor
k

40
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design:
QES/stratified
PS

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

courses in
EOLC

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1, openended
survey)
Audiorecorded
transcribed
interviews

DV4 –
inadequate
symptom
control were
identified.

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

Nedjat-Haiem, F.,
Humanisti
N -79
IV – Roles and
Qualitative
DV1- There is a
LOE: VI
Carrion, I., Gonzalez, K., c model
responsibilities for
content
great variability
S: Includes various
Ell, K., Thompson, B., &
Demographic: p
initiating EOLC
analysis
in the roles of
medical and nonMishra, S. (2017).
31.6%, Nurse
with SIP
medical and
medical providers,
Exploring Health Care
Purpose: To
29.1%, SW 21.5%,
non-medical
sample diversity
Providers’ Views About
examine
& chaplain 17.7%. DV1– Providers’
providers in
W: sample from
Initiating End-of-Life
perceptions of m 43% / f 57%.
roles in engaging in
engaging in
only 2 medical
Care
both medical
EOLC
AA 11%, Asian
EOLC
centers
Communication. Americ
F: Substantiates
& non13%, WNH 44%,
discussions.
an Journal of Hospice
medical
Latino 24%, Indian DV2- The
Some deemed
the need for
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

and Palliative
Medicine®, 34(4), 308317.
Country: USA
Funding: American
Cancer Society Doctoral
Training Grants in
Oncology Social Work
And US Department of
Veterans Affairs,
Hartford/VA Social
Work Scholars Program.
Bias: None

Conceptua
l
Framewor
k

41
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
provider’s
roles and
responsibilitie
s for initiating
EOLC
communicatio
n with SIP
and their
families

Sample/Setting
(describe)

3%, ME 5% . HCE
w/ more than 20 y
28%, 11 to 20 y
24%, 5 to 10 y
33%, 1 to 4 y 13%,
<1 y 2%.
Setting: 2 medical
centers in Los
Angeles,
California
Inclusion: Some
clinical experience
working with
seriously ill
patients with
cancer and their
families.
Exclusion: NR
Attrition: 0

Major Variables
Studied and
Their Definitions

responsibility of
physicians for
initiating and
leading discussions
DV3- The need for
team comanagement in pts
care

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

that it is not
their
responsibility
and some think
it is their
responsibility
SW (71%) &
chaplain (86%).
DV2- 87% of
providers said
EOLC is the
physicians
responsibility.

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
educating both
non-medical and
medical HCP in
EOLC discussions
and their role.
Collaborative
approach is more
desired and it can
increase frequency
of EOLC
discussions

DV3- It was
reported that
working as a
team was an
essential part of
communication
because it
encourages
dialogue across
disciplines

Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Citation

Selman, Lucy. (2016).
Improving confidence
and competence of
healthcare professionals
in end-of-life care: An
evaluation of the
‘Transforming End of
Life Care’ course at an
acute hospital
trust. Supportive &
Palliative Care, 6(0),
231-237.

Conceptua
l
Framewor
k

Conceptua
l
Framewor
k
Comskil
model

42
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design:
Mixedmethod
longitudinal
approach
Surveys &
Interviews

Sample/Setting
(describe)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Major Variables
Studied and
Their Definitions

N – 236 healthcare
workers

IV- 2-day TEOLC
course

Demographics:
49.2% QN, 16.1%
NM, 15.3% GP,
5.5% HCA, 5.1%
MTG, 9% other
Health care
personnel. 41.9%
work at the
hospital & 54.7%
in the community

Quantitative
DV1- S 14 selfassessment
questions examined
confidence,
understanding and
knowledge of
EOLC topics

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)
Measurement
/
Instrumentati
on
(focus group,
1:1, openended
survey)
SEPC 10point Likert
scale (0=very
anxious and
10=very
confident).
SSI 20
minutes

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

Mean
change
scores and
paired t
tests were
calculated
and freetext
responses
analysed
thematicall
y

Quantitative:
DV1:Significant
improvement
(p<0.001) was
identified in all
self-assessment
topics

Data
Analysis

Qualitative:

LOE:
S: Mixed method
W: Sampling
process not clearly
defined
C:
The TEOLC
course improved
participants’ selfrated confidence,
competence and
knowledge in
EOLC.

Purpose: To
DV2evaluate
participants are
course
more likely and
participants’
Country: UK
have more
self-rated
Qualitative
Setting: Hospital
desire to engage
confidence,
DV2-confidence in
Funding: Health
and community
in EOLC
competence
practice
Education South
and
clinics in the UK
DV3-confidence in
discussions
F: Educational
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

London’s Strategic
Programmes grant to
King’s Health Partners

43
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
knowledge of
EOLC topics.

Sample/Setting
(describe)

Inclusion:NR
Exclusion:NR
Attrition:0

Bias: None

Major Variables
Studied and
Their Definitions

education

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

DV3Participants
would
recommend the
course and
reported that it
would influence
their practice

intervention is
effective in
improving
confidence of
healthcare
providers in
providing EOL
care and it is
highly accepted by
HCP

Design/
Measurement
Level/Quality of
Method/
/
Evidence;
Major Variables
Sample/Setting
Data
Findings/
Citation
Sampling
Instrumentati
Decision for
Studied and
(describe)
Analysis
Themes
(Grounded
on
practice/
Their Definitions
Theory,
(focus group,
application to
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience
Conceptua
l
Framewor
k

END-OF-LIFE CARE

Citation

Coyle, N., Manna, R.,
Shen, M., Banerjee, S.,
Penn, S., Pehrson, C., . .
. Bylund, C. (2015).
Discussing Death,
Dying, and End-of-Life
Goals of Care: A
Communication Skills
Training Module for
Oncology
Nurses. Clinical Journal
of Oncology
Nursing, 19(6), 697-702.

Conceptua
l
Framewor
k

Comskil
Model

44
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
phenomenolo
gy,
Narrative…)
Design:
Retrospective
study
PPD/Conveni
ence sampling

Sample/Setting
(describe)

n= 247 nurses
working in
oncology

Major Variables
Studied and
Their Definitions

IV- EOL CST
module; a 45
minute didactic and
90 minute of small
group interaction

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)
1:1, openended
survey)
Ordinal, fivepoint Likerttype scales

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
practice/
Generalization

Pairedsample Ttest

1–5 Likert-type
scale when
compared before
(— X = 3.09,
SD = 1.03) and
after (— X =
4.07, SD = 0.69)
they attended
the module
(t246 = -18.66,
p<0.001)

LOE: III

S: Solid
framework, large n
size
Demographics:
AC – 68%
W: Non-RCT, CS,
Purpose: To
DV1 - confidence
PC – 16%
exclusion for
adapt EOLC
in discussing death,
CC -10%
participants not
CST module
dying, and end-ofUC – 6%
reported, no
and evaluate
life goals of care
blinding, single
Setting: Inpatient
confidence
with patients,
hospital
oncology
and skills of
DV2 - Overall
C: Significant
the
satisfaction with the
increased in
Inclusion: Nurses module
participants
confidence on
Country: USA
working in
and
discussing death,
oncology and
satisfaction
dying, and EOL
Funding: Geri and ME
participated in
with the
goals of care with
Fund, Memorial Sloan
CST
module
pts, as well as
Kettering Nursing
overall satisfaction
Education, the Fridolin
Exclusion: None
with the module
F: Proves that
Charitable Trust, and the
reported
education can
National Cancer Institute
Attrition: 0
improve
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

Bias: None

Citation

Lakin, J., Koritsanszky,
L., Cunningham, R.,
Maloney, F., Neal, B.,
Paladino, J., . . .
Bernacki, R. (2017). A
Systematic Intervention
To Improve Serious
Illness Communication
In Primary Care. Health
Affairs (Project
Hope), 36(7), 12581264.

Conceptua
l
Framewor
k
Comskil
model

45
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design:
Prospective
Cohort
Implementatio
n Trial/CS

Sample/Setting
(describe)

Sample/Setting
(describe)

N - 178
IG - 101
CG - 77
Demographic:
50.6% are m, M
age is 79, WNH
80.2%

Major Variables
Studied and
Their Definitions

Major Variables
Studied and
Their Definitions

IV- SICP
DV1- prevalence,
timing, &
accessibility of
conversations
DV2comprehensiveness
of conversation

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Measurement
/
Instrumentati
on
(focus group,
1:1, openended
survey)
Retrospectiv
e chart
review
Likert Scale

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
confidence and
knowledge of
nurses in EOLC
communication

Data
Analysis

T-tests

Findings/
Themes

pts in the IG
(62.4%) than in
the CG (42.9 %;
p ¼ 0.0020) had
documentation
of at least one
serious illness
conversation.
Comprehensiven
ess of
conversation
p<0.0001

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
LOE:II
S: Blinding
retrospective chart
review, diverse
clinics

Purpose: To
evaluate the
W: CS, lacked
data on direct pts
use of SICP in
a high-risk PC Setting: 14 PC
outcomes, SQ may
clinics
population on
prompt providers
DV3- frequency of
IG-6
the
to initiate EOLC
screening
CG-8
prevalence,
for CG
Country: USA
timing,
Time frame: 24
timing NS – p =
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Funding: Partners
HealthCare and the
Charina and Branta
Foundations
Bias: None

Conceptua
l
Framewor
k

46
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
accessibility,
and
comprehensiv
eness of
documented
serious illness
conversations
& hospice use
among pts.

Sample/Setting
(describe)

Inclusion: pts that
may die in the next
2 years based on
the clinician SQ
survey “Would
you be surprised if
this patient died in
the next 2 years?”
or based on
clinicians’
judgment
Exclusion: None
Attrition: 0

Major Variables
Studied and
Their Definitions

months

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

0.8197
Intervention
clinics screened
more pts (72.7
% compared to
39.6 % in
comparison
clinics; p ¼
0:0005)

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
C: Improves
access to highquality serious
illness
conversations for
PC pts in a highrisk care
management
program
F: Brief clinician
training may
improve frequency
and confidence of
providers in
EOLC.

Design/
Measurement
Level/Quality of
Method/
/
Evidence;
Sampling
Instrumentati
Conceptua
Major Variables
Decision for
(Grounded
Sample/Setting
on
Data
Findings/
l
Citation
Studied and
practice/
(focus group,
Theory,
(describe)
Analysis
Themes
Framewor
Their Definitions
application to
1:1, openphenomenolo
k
practice/
ended
gy,
Generalization
Narrative…)
survey)
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Hjelmfors, L., Van Der
Wal, M., Friedrichsen,
M., Mårtensson, J.,
Strömberg, A., &
Jaarsma, T. (2015).
Patient-Nurse
Communication about
Prognosis and End-ofLife Care. Journal of
Palliative
Medicine,18(10), 865871.
Country: Netherlands
and Sweden
Funding: Heart and
Lung Foundation
and King Gustaf V and
Queen Victoria’s
Foundation of the
Freemasons.

Conceptua
l
Framewor
k
Humanisti
c model

47
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
Design:
QDCS
Purpose: To
explore why
and how often
HF nurses
discuss
prognosis and
EOL care.

Sample/Setting
(describe)

N - 279 nurses
N -1809 patient
conversations
Demographics:
HF nurses:
90% f, M age 50,
M YOE 27, YOE
with HF pts 10.
HF pts:
Sweden 611: m –
68%,
married/LWP
65%, Age M age
70
HF pts
Netherlands
1198: m – 58%, M
age 72, 88% are
NYHA class II or
III

Major Variables
Studied and
Their Definitions

IV – Registration
form and survey
DV1 – Frequency
discussing
prognosis
DV2 – Frequency
discussing EOL
care

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)
Short
registration
form for
every HF
patient they
met in their
practice
during a prespecified
week.
Open-ended
questions
about EOL
care and
prognosis
conversation
s.

Data
Analysis

Findings/
Themes

Student’s ttests and
chi-square
tests.

DV1-Prognosis
was discussed in
687 patients
(38%)
DV2-EOL care
only 179
patients (17%),
1060 patients
(62%) with
whom prognosis
was not
discussed,
nurses reported
that this could
be relevant to
discuss in the
future in 70% of
the patients.

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
LOE- VI
S - large sample
size for qualitative
study
Winstrumentation,
survey form was
used instead of
interviews.
C- Patient-nurse
communication
about prognosis
and end-of-life
care does not seem
to be routine in
patient education
in HF clinics, and
these discussions
could be included
more often.

Prognosis was
F- Even in
more often
specialized clinics,
discussed with
Setting: HF
EOLC is lacking,
the Dutch
Bias: NR
outpatient clinics
patients
therefore the need
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

48
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

compared to the
patients in
Sweden (41%
versus 34%, p <
0.001); a
significant
difference was
also seen in
conversations
about end-of-life
care (13%
versus 4%, p <
0.001)

Inclusions: HF
nurses
Exclusion: NR
Attrition:19.5%

Citation

Theory/
Conceptua
l
Framewor
k

Design/
Method/
Purpose

Sample/ Setting

Findings/
Themes

Major Variables &
Definitions

Measurement
/
Instrumentati
on

Data
Analysis
(stats used)

Findings/
Results

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
for educating
healthcare
providers is critical

Level/Quality of
Evidence;
Decision for
practice/
application to
practice
Song, Ward, Fine,
Social
Design: 2
N - 210
IV - SPIRIT
TFAT, DCS, OR
Patient
LOE: II
Hanson, Lin, Hladik, . . . Cognitive
group RCT
IG - 109
intervention
DMC (a =
CI
Decisional
S: randomization,
Bridgman. (2015).
Theory
CG - 101
included 2 sessions, 0.74),
P value
Conflict Scale
low risk, low cost
Advance Care Planning
SCT
Purpose: To
and all sessions
HADSscores decreased W: Low sample
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

and End-of-Life
Decision Making in
Dialysis: A Randomized
Controlled Trial
Targeting Patients and
Their
Surrogates. American
Journal of Kidney
Diseases, 66(5), 813822.
Country:
USA
Funding: National
Institutes of
Health, National Institute
of Nursing

Conceptua
l
Framewor
k

49
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
examine the
efficacy of
ACP on
preparation
for EOL
decision
making for
dialysis pts
and surrogates
and for
surrogate’s
bereavement
outcomes

Sample/Setting
(describe)

Demographic:
Patient- M age is
62.6, 57% f, HSG
52.5%
Surrogate - M age
is 54.1, 72% is f,
HSG 46.2%
Setting: 20
outpatient dialysis
centers
Inclusion: 18 y/o
or older, AA or
white, on dialysis
therapy at least 6
months, CCI score
of 6 or CCI score
of 5 and
hospitalization in
the last 6 months,
English speaking
for both surrogates
and pts.

Major Variables
Studied and
Their Definitions

included both
patient and
surrogate.
DV1 – pts and
surrogate
preparedness
(baseline, 2, 6 , &
12 mos)
DV2 – surrogate
bereavement after
death (baseline, 2,
6, & 12 mos)

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)
anxiety (a =
.83), PTSS10 (a = 0.89),
HADSdepression (a
= 0.56)

Data
Analysis

Findings/
Themes

over time in
SPIRIT while
increasing in
control, a
significant
intervention
effect across
time points
(β = −0.12; 95%
confidence
interval
[CI], −0.22
to −0.02; P = 0.0
1)

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
size
C: SPIRIT was
associated with
improvements in
dyad preparation
for end-of-life
decision making
and surrogate
bereavement
outcomes
F: SPIRIT or
educating the
patients about
illness cognition
has beneficial
effect on patients
and surrogates for
EOL decision
making. Therefore
substantiating the
need for healthcare
providers to have
the knowledge to
engage in EOL
discussions.

DCS –
OR/CI:−0.12
(−0.22 to −0.02)
Time frame: 2
Bias: NR
HADS anxiety –
years
OR −1.2 (−2.8
to 0.3)
PTSS-10 –
OR/CI: −4.0
(−10.2 to 2.2)
HADSdepression –
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

50
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Exclusion: if not
meet inclusion
criteria

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

OR/CI: −2.54
(−4.34 to −0.74)

Attrition: 13%
Citation

Theory/
Conceptua
l
Framewor
k

Design/
Method/
Purpose

Sample/ Setting

Major Variables &
Definitions

Measurement
/
Instrumentati
on

Data
Analysis
(stats used)

Findings/
Results

Level/Quality of
Evidence;
Decision for
practice/
application to
practice
Zimmermann, Swami,
Humanisti Design:
N - 461
IV: Consultation
FACIT-sp (a
Mixed
FACIT-Sp at 3
LOE: II
Krzyzanowska, Hannon, c Model
CRCT
IG - 228
and follow up in the = 0.86),
effects
months did not
S: randomization
Leighl, Oza, . . . Lo.
CG – 233
oncology palliative
QUAL-E,
models,
differ
W: done at one
Purpose: To
(2014). Early palliative
care clinic by RNs
ESAS (a =
implemente significantly
center,
assess the
care for patients with
and physicians
0.75),
d with
between groups
interventions were
Demographics:
effect of early
advanced cancer: A
IG M age 61.2, f
FAMCAREPROC
(mean change
not masked
C: This study
DV1: QOL
palliative care 59.6%
cluster-randomised
P16,
MIXED or
score in
suggests that early
DV2: Symptom
in patients
controlled trial. The
CG M age 60.2, f
CARES-MIS GLIMMIX
intervention
palliative care
severity
with advanced 53.6%
Lancet, 383(9930),
scales
using SAS
group +1·60
might improve
DV3:Satisfaction
cancer on
1721-1730.
software
[SD
Setting: Oncology with care
several
14·46] vs contro quality of life and
DV4: Problems
Country: Canada
increase
clinics
aspects of
l group −2·00
QOL
with medical
[13·56], p=0·07) satisfaction with
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Funding: Canadian
Cancer Society, Ontario
Ministry of Health and
Long Term Care
Bias: Done at one
center, selection bias

Conceptua
l
Framewor
k

51
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Inclusion: 18 y/o
and older, Stage IV
cancer, estimated
survival of 6-24
months
Exclusion: Nonenglish speaking
and inability to
pass cognitive
screening test
Attrition: NR

Major Variables
Studied and
Their Definitions

interactions
Time frame – 4
months

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

QUAL-E was
significant
(+2·33
[8·27] vs +0·06
[8·29], p=0·05)
ESAS was not
significant
(+0·14
[16·93] vs +2·12
[13·88], p=0·33)

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
their care for
patients with a
large range of
advanced solid
tumor
malignancies
F: Early palliative
or EOLC can have
a positive impact
on quality of life.

The secondary
4-month
endpoint, the
differences in
change scores
were significant
for FACIT-Sp
(+2·46
[15·47] vs −3·95
[14·21],
p=0·006),
QUAL-E (+3·04
[8·33] vs −0·51
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

52
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

[7·62],
p=0·003), and
ESAS (−1·34
[15·98] vs +3·23
[13·93], p=0·05
At the 4-month
endpoint, the
significant
differences for
FACIT-Sp,
QUAL-E, and
FAMCARE-P16
were robust
across analyses,
whereas the
significant
difference for
the ESAS was
not

Paladino, Lamas, Lakin,
Social
N1 (clinicians) 90
IV – Systematic
EMR chart
P value
DV1- 342
LOE: II
Design:
Epstein, & Bernacki.
Cognitive
CRCT
N2 (patients) 342
intervention
review
analysis
patients
S: RCT
(2016). Delivering More, Theory
W: Only
IG1 – 47
includes: clinician
enrolled: 176
Better and Earlier Goals
preliminary data is
CG1- 43
identification of
intervention;
Purpose:
of Care Conversations to
Evaluate
IG2 – 176
patients at high risk
166 control;
available. Many
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Seriously Ill Oncology
Patients in the Clinical
Setting
(FR481C). Journal of
Pain and Symptom
Management, 51(2),
380-381.

Conceptua
l
Framewor
k

53
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)
clinician
adoption and
acceptability
of the serious
illness
intervention.
Determine the
frequency,
timing, and
quality of
goals-of-care
documentatio
n before death

Sample/Setting
(describe)

CG2 -166

Major Variables
Studied and
Their Definitions

of death in a year
using the
‘‘surprise’’
question; 21⁄2 hour
clinician training on
the Serious Illness
Conversation
Guide; email
trigger/reminder;
and EMR
documentation

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization

38% died
components of the
(n=131). Among research method
patients who
are missing and
Demographic:
Oncology
died,
not explicitly
clinicians
preliminary
reported.
C: Preliminary
Patients in Dana
chart review
data about the
Farber Cancer
showed that
Serious Illness
Institute
more goals-ofCare systematic
care
Country: USA
approach
Setting: Cancer
conversations
Funding: Not disclosed
demonstrated
Institute
were
strong clinician
documented
Bias: Site
Inclusion: Only
adoption and
before death in
DV1 – Frequency
preliminary data
acceptability. The
intervention
and timing of EOL
available, study
intervention
compared
to
discussions
still ongoing
resulted in more,
control (92%
DV2 – Quality of
better, and earlier
versus
70%,
EOL goals of care
Exclusion: Only
conversations and
p=0.0037);
documentation
preliminary data
documentation
intervention
available, study
about patient
conversations
still ongoing
values and
took place three
priorities in the
months earlier
Attrition: None
medical record
than control
reported
(median 143
F: An effective and
days versus 63
days,
better
Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

Citation

Conceptua
l
Framewor
k

54
Design/
Method/
Sampling
(Grounded
Theory,
phenomenolo
gy,
Narrative…)

Sample/Setting
(describe)

Major Variables
Studied and
Their Definitions

Measurement
/
Instrumentati
on
(focus group,
1:1,
researcher(s)

Data
Analysis

Findings/
Themes

p=0.0008).
DV2conversations
were more
patient-centered
(95% versus
45%, p<0.001)
and more readily
retrievable in the
EMR (68%
versus 28%,
p<0.001).

Level/Quality of
Evidence;
Decision for
practice/
application to
practice/
Generalization
communication
between healthcare
providers and pts
can improve
EOLC discussions
and honor pts
wishes and values.

Key: AA- african american AC- acute care; ACP- advance care planning; a- alpha; C- conclusion; CARES-MIS- cancer rehabilitation evaluation system medical interaction
subscale; CC- critical care; CI- confidence interval; CRCT- cluster randomized controlled trial; CS- convenience sampling; CST- communication skills training; DCS- decision
conflict scale; DMC- decision making confidence DV-dependent variable; EOL- end of life; EOLC- end of life care; ESAS- Edmonton symptom assessment system; Ffeasibility; FACIT-sp- functional assessment of chronic illness therapy; FAMCARE-P16- patient satisfaction with care measures; f- female; GP- general practitioner; HADShospital anxiety depression scale; HCA- healthcare assistant; HCE- healthcare experience; HF- heart failure; IM- internal medicine IV- independent variable; LC- long-term
condition; LOE- level of evidence; M-mean; ME- middle eastern; MP- midlevel provider; MTG- medical training graduate; m- male; N-number of studies; NM- nurse manager;
NR- none reported; NS- non-significant; NZ- new zealand; NYHA- new york heart association; n- number of participants; OR- odds ratio PC- primary care; PCN- primary care
nurse; PD- pediatrics; PPD- pretest posttest design; PGS- post-graduate study; PS- purposive sampling; PTSS- post-traumatic stress symptoms; p- physician; pts- patients; QESqualitative exploratory study; QN- qualified nurse; QDCS; qualitative descriptive and comparative study; QDS- qualitative descriptive study; QOC- quality of end-of-life
communication; QUAL-E- quality of life at the end of life scale; RCT- randomized controlled trial; RGCP- royal college of general practitioners; S- strengths; SEPC- selfefficacy in palliative care; SCT- social cognitive theory; SICP- serious illness care program; SIP- seriously ill patients; SPIRIT- sharing patient’s illness representations to
Increase Trust; SSI- semi-structured interview; SQ- surprise question T- time; TEOLC- transforming end of life care; TFAT- team functioning assessment tool; UC- urgent care;
UK- united kingdom; W- weakness: WNH- white non-hispanic; YOE- years of experience

END-OF-LIFE CARE

55
Appendix G
Summary Table

Table 2. Synthesis Table
Author
Year
Level of
Evidence

Paladino

Coyle

Hielmfors

2016

2015

2015

Lakin Mitchell Nedjat- Raphael Selman Song Zimmermann
Hajem
2017
2016
2017
2014
2016 2015
2014

I
II

x

III

x

x

x

x

x

x

x

IV
V
VI

Study
Design

Randomized
Controlled Trial
Qualitative
descriptivecomparative
Mixed-method

x

n

Author

x

x

x
x
x

Prospective
Cohort
RetrospectivePre/Post
Qualitative
descriptiveexploratory
Qualitative
descriptive
Qualitative
exploratory

Sample

x

x

x
x
x
x
x

90(clinicians)/342
(patients)

Paladino

247

Coyle

279(clinicians)/1809
(patients)

Hielmfors

178

516

79

x

259

236

210

410

Lakin Mitchell Nedjat- Raphael Selman Song Zimmermann

END-OF-LIFE CARE

Year

Patients’ with
chronic illnesses
Nursing (nonpalliative)
Social worker

56

2012
x

2014

2016

x

x

2015

2015

2017

x

x

x

x

x

x

x

2016

Hajem
2017

Chaplain

2015
x

2014
x

x

Physician
assistant
Nurse practitioner

x

Physicians (nonpalliative)

x

x

x

x

x

x

Intervention

Patient interview

Clinician
interview
Patient specific
feedback
Education session

x

x

x

Follow up and
consultation

Outcomes

Confidence
Frequency
Knowledge

Satisfaction with
intervention
Satisfaction with
care
Quality of
communication
Quality of life

x

x

x

x

x








x























Descriptive
Themes

x

Lack of
knowledge of the
clinicians

Author

x

Paladino

Coyle

Hielmfors

x

x

x



x

Lakin Mitchell Nedjat- Raphael Selman Song Zimmermann

END-OF-LIFE CARE

Year

Confusion in
roles of various
clinicians in endof-life
Patient and
families concern
about advance
care planning
Insufficient time
End-of-life care is
essential

57

2012

2015

2015

2017

2016
x

Hajem
2017
x

2014
x

x

x

x

2016

2015

2014