16

CHAPTER II

REVIEW OF RELATED LITERATURE

This chapter of the study presents the conceptual literature and related studies on

knowledge and perceived competency on palliative care.

WHO definition of palliative care

In 2002, the World Health Organization established a revised definition of

palliative care for adults and a separate one for children: Palliative care is an approach

that improves the quality of life of patients and their families facing the problem

associated with life-threatening illness, through the prevention and relief of suffering by

means of early identification and impeccable assessment and treatment of pain and other

problems, physical, psychosocial and spiritual.

Palliative care:

 provides relief from pain and other distressing symptoms;

 affirms life and regards dying as a normal process;
 intends neither to hasten or postpone death;
 integrates the psychological and spiritual aspects of patient care;
 offers a support system to help patient’s live as actively as possible until death;
 offers a support system to help the family cope during the patients illness and in

their own bereavement;

 uses a team approach to address the needs of patients and their families, including

bereavement counselling, if indicated;

 will enhance quality of life, and may also positively influence the course of

illness;
 is applicable early in the course of illness, in conjunction with other therapies that

are intended to prolong life, such as chemotherapy or radiation therapy, and

 17

includes those investigations needed to better understand and manage distressing

clinical complications.

WHO definition of palliative care for children

Palliative care for children represents a special, albeit closely related field to adult

palliative care. WHO’s definition of palliative care appropriate for children and their

families is as follows; the principles apply to other pediatric chronic disorders.

Palliative care for children is the active total care of the child’s body, mind and

spirit, and also involves giving support to the family.

 It begins when illness is diagnosed, and continues regardless of whether or not a

child receives treatment directed at the disease.

 Health providers must evaluate and alleviate a child’s physical, psychological, and

social distress.
 Effective palliative care requires a broad multidisciplinary approach that includes

the family and makes use of available community resources; it can be successfully

implemented even if resources are limited.

 It can be provided in tertiary care facilities, in community health centers and even

in children’s homes.

To ensure consistently high- quality palliative care in existing and developing

programs in the United States, in 2002 the National Consensus Project (NCP) carefully

defined this care and set forth an extensive set of clinical practice guidelines for all of its

components. These guidelines were refined and expanded in 2009. They were formulated

after intense debate and discussion by representatives of five major organizations in the

United States, including the American Academy of Hospice and Palliative Medicine

(AAHPM), the Hospice and Palliative Nurses Association (HPNA), the Center to
 18

Advance Palliative Care (CAPC—a palliative care advocacy organization), and the

National Hospice and Palliative Care Organization (NHPCO). The NCP blueprint became

normative for palliative caregivers and was adopted by the U.S. Center for Medicare and

Medicaid Services (CMA).

Here is the NCP’s definition of palliative care and treatment for hospitals and

hospices, as well as out- patient, nursing home, and other programs:

The goal of palliative care is to prevent and relieve suffering and to support the best
possible quality of life for patients and their families, regardless of the stage of the
disease or the need for other therapies. Palliative care is both a philosophy of care and an
organized, highly structured system of delivering care. Palliative care expands traditional
disease- model medical treatments to include the goals of enhancing quality of life for
patient and family, optimizing function, helping with decision making, and providing
opportunities for personal growth. As such, it can be delivered concurrently with life-
prolonging cure or as the main focus of care.

Definition of Hospice

Hospice care is end-of-life care provided by health professionals and volunteers.

They give medical, psychological and spiritual support. The goal of the care is to help

people who are dying have peace, comfort and dignity. The caregivers try to control pain

and other symptoms so a person can remain as alert and comfortable as possible. Hospice

programs also provide services to support a patient’s family.

The need for palliative care

Mortality data was obtained from the WHO Global Health Estimates for 201131.

The diseases of adults (population aged 15 years and above) and children (population

under age 15) requiring palliative care were identified through respective Delphi studies

and subsequent internal reviews (see Appendix 6 for further details).

 19

 Diseases requiring palliative care for adults: Alzheimer’s and other dementias,

cancer, cardiovascular diseases (excluding sudden deaths), cirrhosis of the liver,

chronic obstructive pulmonary diseases, diabetes, HIV/AIDS, kidney failure,

multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, drug-resistant

tuberculosis (TB).
 Diseases requiring palliative care for children: cancer, cardiovascular diseases,

cirrhosis of the liver, congenital anomalies (excluding heart abnormalities), blood

and immune disorders, HIV/AIDS, meningitis, kidney diseases, neurological

disorders and neonatal conditions.

Globally, in 2011, over 29 million (29,063,194) people died from diseases

requiring palliative care. The estimated number of people in need of palliative care at the

end of life is 20.4 million. The biggest proportion, 94%, corresponds to adults of which

69% are over 60 years old and 25% are 15 to 59 years old. Only 6% of all people in need

of palliative care are children. Based on these estimates, each year in the world, around

377 adults out of 100,000 population over 15 years old, and 63 children out of 100,000

population under 15 years old will require palliative care at the end of life.

Worldwide, over 20 million people are estimated to require palliative care at the

end of life every year. The majority (69%) are adults over 60 years old and only 6% are

children.

The highest proportion (78%) of adults in need of palliative care at the end of life

live in low and middle-income countries, but the highest rates are found in the higher-

income groups. Those dying from noncommunicable diseases represent around 90% of

the burden of end of life palliative care. The top diseases are cardiovascular diseases,

cancer, and chronic obstructive pulmonary diseases. Together with diabetes and other
 20

noncommunicable diseases, they account for the vast majority of adult palliative care

needs and tend to predominate in the older age group. The Western Pacific, European and

Southeast Asia regions concentrate almost three-fourths of adults in need of end of life

palliative care. The highest rates are seen in the European Region, followed by the

Western Pacific and Americas regions. Adults in need of palliative care for progressive

non-malignant disease represent the highest proportion of cases for all regions, followed

by cancer with the exception of the African Region where HIV/AIDS and non-malignant

diseases share the same palliative care burden (around 42%) and predominate over

malignant diseases.

The vast majority (98%) of children in need of palliative care at the end of life

belong to low and middle-income countries, and within this group 83% are in the lower

income groups where the highest rates are found. Children dying from congenital

anomalies represent over 25% of the burden of end of life care, followed by neonatal

conditions (almost 15%) and protein energy malnutrition (14%). The African Region

concentrates almost half of children in need of end of life palliative care followed by the

Southeast Asia and Eastern Mediterranean Regions. Children in need of palliative care

for progressive non-malignant disease represent by far the highest proportion of cases for

all regions, whereas palliative care for cancer and HIV/AIDS at the end of life represent a

small percentage.

Barriers to palliative care development

Palliative care is still relatively new to national health systems, particularly in low

and middle-income countries. A public health approach is needed to foster the

development of palliative care services and to overcome existing barriers to palliative

 21

care development. Significant barriers exist in the lack of clear policies establishing

palliative care, lack of educational programs to teach palliative care, lack of essential

medications needed to deliver palliative care, and lack of organized programs to deliver

palliative care. All these barriers can be overcome. Existing resources are available that

can be adapted to individual countries to fill these gaps. What is needed is the will to do

so and to recognize that lack of palliative care is a problem that leads to unnecessary

suffering for the people who are among the most vulnerable in a society.

The vast majority of health professionals worldwide have little or no knowledge

of the principles and practices of palliative care. All medical professional schools should

include basic training on palliative care and continuing professional education should

include palliative care for existing health professionals. A growing body of knowledge

has been accumulated over the past 40 years on the science of palliative care and

palliative medicine. There are now at least 12 professional journals devoted to palliative

care, a growing body of peer-reviewed literature, and numerous books, internet sites,

blogs and forums devoted to all aspects of palliative care (Global Atlas of Palliative Care,

2014).

Palliative care in the Philippines

The movement toward palliative care and hospice care services in the Philippines

began in the late 1980s for patients with cancer (Wright et al, 2008). Malignant

neoplasms are ranked as the third most common cause of mortality for Filipinos, after

diseases of the heart and diseases of the vascular system (Department of Health, 2010).

Today, hospice care services are available for terminally ill cancer patients, patients with

other life-threatening illnesses, and their families (Sharing Hospice, 2007). Palliative care
 22

concepts and principles are part of the curriculum in major medical and nursing schools

in the Philippines and palliative care training programs are delivered to health providers

and volunteers (Gorospe and Bausa, 2006).

Key concepts to consider in understanding the Filipino perspective on death and

dying include cultural values and beliefs related to religion, family, and interpersonal

harmony. Religion holds a central place in the life of Filipinos (Wright et al, 2008). The

Philippines is a predominantly Christian nation, with Roman Catholics making up around

81% of the population (Central Intelligence Agency, 2010). Miranda and colleagues

(Miranda et al, 1998) found that deeply religious Filipinos tended to attribute illness to

reasons of God or a higher power. The predominant belief in the causes of disease was

the ‘will of God’, even though individuals also believed in personal responsibility.

The family is the basic social and economic unit of Filipino kinship. Although family is

important in many cultures, the central role that the family plays in the lives of its

members in the Philippines is unusually significant, with family being rated the most

important source of happiness (Virola, 2010). In times of illness, the extended family

provides support and assistance (Wright et al, 2008). Important values that might affect

interactions between providers and patients and families in the context of terminal illness

include a strong respect for elders, a strong reliance on family as decision makers in case

of illness, and strong expectations of care by the family.

Published literature on palliative care and dignified dying in the Philippines is

limited. Laurente and colleagues (unpublished observations cited in Doorenbos, et al.,

2011) explored the phenomenon of death and dying as experienced by adult terminal

cancer patients in the Philippines and their family caregivers and nurses. The nurses
 23

perceived patients with terminal cancer to be in a state of helplessness and powerlessness.

The patients and family caregivers identified two important aspects of a peaceful death:

first, the presence of family support and acceptance of the burden of the patient and,

second, belief in God and dying as a time to surrender self.

Interventions used to promote dignified dying for patients in the Philippines have

been identified through interviews with patients (C Abaquin, unpublished observations).

Nursing interventions identified by the patients included ensuring comfort, safety, and

privacy; providing therapeutic touch; allowing prayer and religious music as desired;

maintaining a quiet, well-ventilated, and pleasant-smelling environment; and staying with

the patient. In focus group discussions, nurses stated that human dignity is maintained

when a patient’s physical, psychological, and spiritual needs are met and when the patient

is comfortable and clean; is able to participate in making significant decisions regarding

the management of his or her illness; can focus on unfinished business; has loved ones

attending to his or her needs; can openly express concerns, plans, and wishes; has good

and healthy family relationships; is at peace with God; and maintains quality of life (C

Abaquin, unpublished observations as cited in Doorenbos, et al., 2011).

Nursing Curriculum

Within the traditional nursing curriculum, end-of-life care and palliative care are

implemented in most courses, but rarely is there time or room for extensive coverage of

this material (Brajtman et al., 2009). The AACN (2008) authored the Essentials of

Baccalaureate Education, a guiding curricular framework for nursing faculty. An

important aspect for the Essentials of Baccalaureate Education is the mandate to prepare

nursing students to have the ability to provide holistic patient and family-centered care
 24

during the vulnerable time of death. Among the other essentials, the AACN (2008)

stressed the importance of preparing students to use therapeutic communication skills,

and to provide spiritual care when necessary, which are both integral components to

palliative care. However, nurse educators may not have the knowledge to provide

palliative care education to students (Brajtman et al., 2009). Malloy et al. (2006) found

that in addition to palliative care education in the baccalaureate nursing curriculum,

further PC education is needed post-graduation for optimal care of the dying.

The AACN and the Robert Wood Johnson Foundation Roundtable (1998)

developed a document of educational competencies for nurse educators and curriculum

designers to implement within nursing programs called Peaceful Death. Based on the

mandate of the International Council of Nurses (1997), it is the responsibility of the

nursing profession to ensure a peaceful end-of-life for patients and their families

(Peaceful Death, 1998). A goal of the roundtable conference was to integrate PC into the

curriculum with respect to the psychosocial, communicative, spiritual, and physical

aspects of palliative care. A list of precepts was established as a guide for educators to

prepare nurses for end-of-life care. The End-of-Life Nurse Educator Consortium uses this

document frequently during training sessions on PC and integration of palliative care into

educational courses (Ferrell et al., 2005; Malloy et al., 2006).

A national project titled End- of-Life Nursing Education Consortium (ELNEC)

was launched in February 2000 to enable nurses to reduce the physical, psycho- social,

and spiritual burdens and distresses of persons facing severe illness and death. The

ELNEC project developed a nine- module train-the-trainer program that included a

thousand- page curriculum, PowerPoint slides, talking points for each slide, case studies,
 25

and other teaching strategies. Modules included pain and other symptom management,

communication, and ethical issues. Within three years, 277 nurse practitioners and

educators had been trained and were teaching the ELNEC program within and outside

their own clinical and hospice settings in the United States and Canada. By 2008 over

4,500 nurses from all 50 U.S. states and the District of Columbia had attended train- the-

trainer courses. During these years programs in graduate nursing increased their

curriculum coverage of palliative care from a mean of 12 hours to a mean of 34 hours

(Vanderpool, 2015).

Participants found their ELNEC training to be extremely useful, and it inspired

them to share what they had learned with multi- disciplinary palliative care teams.

Knowing that nurses spend more time at the bedsides and in the homes of persons facing

the end of life than any other providers, many nurses regarded their post- training work as

a privilege. They could now provide “the most excellent care available” and offer

essential levels of education to peers and students (Vanderpool, 2015).

In the Philippines, the present nursing curriculum includes a 36 hour lecture in

Hospice Palliative Care which is an elective subject. It is an introductory course which

provides an overview of palliative care and ensuring quality of life of the person in near

death situation (CMO 14, s. 2009).

In order to ensure palliative care (PC) is integrated into the curriculum, the first

step is to assess nurse educators’ knowledge and attitudes towards palliative care (PC).

Brajtman, Fothergill-Bourbonnais, Fiset, and Alain (2009) assessed PC attitudes,

knowledge, and PC curricular needs among Canadian nurse educators (n = 53). PC

attitudes were assessed by means of the FATCOD scale. Brajtman et al. assessed
 26

knowledge by means of the PCQN, and performed a needs assessment using the

Educators’ Educational Needs Questionnaire. Similar to Brajtman and colleagues (2007)

study on nursing student PC knowledge, the educators had a low level of knowledge

(64% pass rate on the PCQN), but expressed an 88% approval rate towards PC as

measured by the FATCOD. Brajtman et al. (2009) reported that on the needs assessment

evaluation, 23% of the nurse educators felt they were very prepared to teach PC, whereas

43% felt ill-prepared. Brajtman et al. (2009) identified several barriers including lack of

class time, room in the course material, and formal planning of PC into the curriculum,

resulting in little PC content integrated into the coursework.

As part of the End-of-Life Nursing Education Consortium (ELNEC), Ferrell et al.

(2005) evaluated PC knowledge among nurse educators (n = 502) and students (estimated

n = 19,000) across the United States after utilization of PC modules in undergraduate

associates and bachelors nursing programs (n = 26). Ferrell and colleagues (2005)

administered pretests and posttests to students who participated by completing four

modules. The PC modules were taught by nursing school faculty across the United States.

With the institution of these modules among schools, faculty noted the effectiveness of

the four modules in increasing PC knowledge among their students. The ELNEC works

to promote PC education not only among students and faculty, but registered nurses

across the country. With the institution of training sessions and modules, increased levels

of PC knowledge have been noted among the participants in the seminars and educational

experiences offered by ELNEC (Ferrell et al., 2005).

Researchers have found that nursing faculty have a similar level of basic PC

knowledge as the students they are teaching (Brajtman et al., 2009). In order to educate
 27

students, it is important for faculty to possess PC knowledge and to seek out resources to

assist with the successful implementation of PC material within the curriculum. As

Ferrell and colleagues (2005) reported, instituting PC modules was effective in helping to

improve students’ PC knowledge, as well as encouragement and accountability from

faculty.

Review of Related Studies

Knowledge and Perceived Competence in Palliative Care

Knowledge on Palliative Care

Nurses’ lack of knowledge with death and dying and the incorporation of PC

practices for terminally ill patients is an area of concern for nurse educators (Ferrell et al.,

2010). Despite the AACN’s Essentials of Baccalaureate Education (2008) placing

emphasis on knowledge acquisition of the care of a dying patient as a generalist

practitioner, PC information accounts for only 2% of content found in textbooks (Malloy

et al., 2006). In addition to a lack of information, students verbalized fear and feelings of
 28

guilt when caring for a dying patient (Liu et al., 2011). Feelings of fear and guilt can be

due to comfort level in caring for a dying individual, or the values and beliefs of the

student (Liu et al., 2011). A combination of a lack of educational materials and the

emotional aspect of caring for a terminally ill patient poses a challenge for nurse

educators.

Nurse educators have begun to explore palliative care knowledge of nursing

students as a first step in identifying areas within nursing curricula to strengthen.

Karkada, Nayak, and Malathi (2011) assessed PC knowledge and attitudes of 83 Indian

diploma nursing students. The aim of Karkada and colleagues’ study was to pinpoint the

needs of the students in the coursework in regards to palliative care, and to identify

strategies for incorporating PC practices throughout the curriculum. Karkada et al.

administered a structured twenty question multiple choice questionnaire to ascertain the

level of knowledge held by the students about PC. Karkada and colleagues found that

79.5% of students had poor knowledge on PC practices. Despite this low finding,

Karkada and colleagues reported that 92.8% of the students expressed favorable attitudes

towards PC. Karkada et al. recommended initiating more information on symptom

management, patient-centered communication, ethical issues surrounding PC, and team

building strategies into the nursing curriculum to enhance the effectiveness of the

student’s PC knowledge.

Kuebler (2012) conducted a similar project where she compared senior BSN

students’ self-perceived knowledge with actual PC knowledge at a southeastern U.S.

university (n = 36) and a northeastern U.S. university (n = 54). Kuebler’s goal was to

identify the learning needs of students in relation to PC. Kuebler administered a 4-point
 29

Likert scale to determine students’ self-perceptions of knowledge, and then a 45 question

multiple-choice quiz, the chronic disease objective knowledge examination, to assess

students’ knowledge of pathophysiology and symptom management. Similar to Karkada’s

et al. (2011) study, Kuebler found that both cohorts scored low on the 45 question quiz,

with a mean score less than 50%. Kuebler also reported a weak correlation between

perceived and actual PC knowledge in both groups. Kuebler concluded that a lack of PC

material in the BSN curriculum may have been a contributing factor along with student

“differences in geographical locations, clinical experiences, curriculum content,

individual personality, and personal expectations” (p. 90).

Sadhu, Salins, and Kamath (2010) assessed PC knowledge among BSN students,

undergraduate medical students, and allied health science students in India (n = 326).

Sadhu et al. (2010) used a nonrandomized sample and administered an internally valid 39

point questionnaire. The questionnaire consisted of ten subscales. Sadhu and colleagues

reported that students scored in the range of 50-70%. Similar to Karkada et al. (2011) and

Kuebler (2012), Sadhu et al. (2010) found that there was a lack of education on end-of

life care in the sample, and recommended curricular revision in the form of establishing a

holistic approach to end-of-life care and educating on communication, pain management,

and spirituality.

Brajtman, Fothergill-Bourbonnais, Casey, Alain, and Fiset (2007) studied the

attitudes, knowledge, and skills of graduating BSN students (n = 58) in relation to PC.

Brajtman et al. (2007) utilized a demographic questionnaire, the palliative care quiz for

nursing (PCQN), and Frommelt attitudes toward care for the dying scale (FATCOD). The

students scored 61% on the PCQN, and 86% on the FATCOD (Brajtman et al., 2007).
 30

While knowledge level was low, attitudes were positive towards PC. Brajtman et al.

recommended the use of web-based tools to create an interactive environment, increased

exposure to PC in the clinical arena, and beginning PC education during the first year of

school to increase PC knowledge.

Assessing changes in PC knowledge was an area that Arber (2001) explored

among third year nursing students (n = 45) at Kingston University in the United

Kingdom. Arber assessed the growth in knowledge after a module was given over a 5

month period with a pretest and posttest. The module consisted of 50 hours of lecture,

which emphasized physical and psychosocial aspects that affected quality of life and

proper communication with family and patients, and then one week of hospice experience

(Arber, 2001). The palliative care quiz for nursing (PCQN) was utilized for the pretest

and posttest. Arber reported significant improvement in two of the three categories

assessed (philosophy of palliative care and pain and symptom management). The

category of psychosocial and spiritual care had a 70% pass rate on the pretest, which

Arber attributed to exposure to the topics in other nursing courses. Arber found that

confidence level of students improved after completing the module, and concluded that a

required PC module within the curriculum would be beneficial for the students.

Ross et al. (1996) performed a quantitative pre-test and post-test design study. A

convenience sample of 200 four-year generic nursing students and 196 post-RN students

in Canada were utilized. Ross et al., (1996) investigated the level of knowledge of

palliative care with the Palliative Care Quiz for Nurses (PCQN) which reflected the

definition of palliative care at that time. Participants were students who were enrolled in a

generic 4-year baccalaureate nursing program and a post-RN nursing program that were
 31

progressing toward a baccalaureate nursing degree and nurses who were practicing that

had obtained a RN license or registered practical nurse license. The mean scores for

registered nurses (RN) were 75%, post-RN students were 65%, registered practical nurses

were 60%, and generic nursing students were 46%. The mean percentage of correct

responses on the PCQN for the total sample was 61% out of 100% which demonstrated

that nursing students and nurses lack knowledge of palliative care (Ross et al., 1996).

Prem et al. (2012) conducted a quantitative cross-sectional design study of 363

nurses in a multispecialty hospital. The investigators examined nurses’ knowledge of

palliative care utilizing the PCKT among nursing professionals who was attending an in-

service at a multispecialty tertiary care hospital. The overall score for the participants on

the PCKT was 35.8%. Nurses’ knowledge of the philosophy of palliative care was 36.5%.

According to Prem et al. (2012), nurses in the study had a low understanding of the

philosophy of palliative care and a low understanding of the general knowledge of

palliative care.

Brazil et al. (2012) conducted a quantitative cross-sectional design study. A

convenience sample of 119 RNs and LPNs from four LTC facilities in Canada was

utilized. Brazil et al. (2012) examined the knowledge level of nurses utilizing the PCQN.

The mean score for participants on the PCQN was 59.5% out of 100% for the

participants. According to Brazil et al. (2012), nurses in the study understood 12 out of 20

questions pertaining to palliative care on the PCQN.

Palliative Care Knowledge Instruments

The instrument that was used to assess BSN student PC knowledge in this study

was the PCQN developed by Ross, McDonald, and McGuinness (1996). The PCQN
 32

assesses PC knowledge among nurses in an objective manner. Another instrument that

can be used for assessing knowledge is the palliative care knowledge test (PCKT)

developed by Nakazawa and colleagues (2009), which is similar in structure to the

PCQN.

Ross, McDonald, and McGuiness (1996) developed the palliative care quiz for

nursing (PCQN) which has been used in multiple studies since its development (Arber,

2001; Brazil et al., 2012; Knapp et al., 2009). Ross and colleagues (1996) utilized the

Canadian Palliative Care Curriculum as a conceptual framework to guide the

development of the tool. The preliminary version of the quiz consisted of 60

true/false/don’t know questions. A committee of PC coordinators reviewed the questions

for accuracy, relevance, and clarity. Ross et al. retained 20 questions for the final version

of the PCQN (1996).

Ross and colleagues administered the PCQN in Ontario, Canada, to a sample of

200 students and 196 nurses. Within the total sample, participants scored a mean of 61%

on the final PCQN (Ross et al., 1996). During the initial psychometric evaluation, Ross

and colleagues assessed internal consistency reliability using Cronbach’s alpha. An

acceptable level of internal consistency for the PCQN was reported (α = 0.78) (Ross et

al., 1996). Ross et al. also performed a test-retest reliability assessment by testing the

participants a second time three weeks after the first administration of the quiz, reporting

a moderate correlation coefficient of 0.56.

With the development of the PCQN, Ross and colleagues (1996) wanted to

identify misconceptions of PC nursing and stimulate conversation among those

participating in the quiz, which was accomplished. However, limitations of this study
 33

were identified as not being comprehensive or including higher level questioning about

PC knowledge. Nonetheless, the basic level of knowledge the PCQN is testing is reliable

and valid, as will be shown in the following reviews of studies done using this

instrument.

Knapp et al. (2009) performed a study to determine the level of PC knowledge

among pediatric nurses in Florida. The PCQN was utilized to determine PC knowledge.

The sample consisted of 61% of the nurses who worked at the 21 Title V nursing offices

in Florida (Knapp et al., 2009). Knapp and colleagues reported that PCQN scores ranged

from 14%-87%, with a mean score of 55%. Upon further assessment of the results,

Knapp et al. concluded that 14 of the questions were too difficult, citing that pediatric

nurses may lack general knowledge in PC. Knapp and colleagues proposed that a tool to

measure pediatric PC knowledge specifically would be beneficial for the field to

adequately assess this population’s knowledge. Overall, the results of this study were

similar to the initial PCQN study (Ross et al., 1996) in that the mean scores are similar

among various populations of nurses.

In a similar study performed by Brazil, Brink, Kaasalainen, Kelly, and McAiney

(2012) in Ontario, Canada, an assessment of PC knowledge among 69 nurses employed

at four different long term care homes was conducted using the PCQN. Brazil et al.

reported that the nurses scored between 52.5%-63.41% on the PCQN, indicating a low

level of PC knowledge (Brazil et al., 2012). Brazil and colleagues further assessed the

items by placing the items in rank order of correct responses to determine common

misconceptions among the sample. Brazil et al. found that among the four long term care

homes similar misconceptions were held, including feeling that PC is not an aggressive
 34

treatment (Ross et al., 1996). Similar to Knapp and colleagues’ study (2009), Brazil et al.

(2012) felt that a limitation occurred because the PCQN is not specific to long term care.

The PCQN was designed to determine basic palliative care knowledge among

nurses (Ross et al., 1996) that can also be used to assess the PC knowledge of nursing

students. A limitation of the PCQN noted by Knapp et al. (2009) and Brazil et al. (2012)

is the instrument is not specific to specialties in nursing (e.g. pediatric or long term care).

However, the PCQN has an acceptable level of internal consistency reliability, which was

reported by Ross et al. and was not replicated in other studies, (Brazil et al., 2012; Knapp

et al., 2009; Ross et al, 1996) and is a valid instrument for assessing palliative care

knowledge.

Another instrument that has been developed along the same vein as the PCQN is

the PCKT which was created by Nakazawa et al. (2009) in Japan. This PCKT was created

to expand on information lacking within the PCQN including psychiatric disorders,

evaluating physician knowledge, and using medications that are used in Japan for pain

management (Nakazawa et al., 2009). Nakazawa et al. administered the questionnaire to

registered nurses (n = 797). The preliminary version of the PCKT had 40 items, which

was reduced to 20 items with correct/incorrect/unsure options in this version. Nakazawa

and colleagues administered a retest two weeks after the first administration (n = 147).

The Cronbach’s alpha (0.81) indicated an acceptable level of internal consistency, as did

the test-retest reliability which indicated an acceptable correlation coefficient of 0.81

(Nakazawa et al., 2009).

The PCKT was used by Prem et al. (2012) to assess nurses’ knowledge (n = 363)

about PC in India. Prem and colleagues used this instrument to compare differences in
 35

knowledge between genders and among work settings (e.g. intensive care units,

outpatient units, medical surgical floors, and other). Prem et al. found no statistical

significance among these different groups in regards to PC knowledge. Correct responses

ranged from 13-50%, which is similar to what other researchers have reported on PC

knowledge (Brazil et al., 2012; Knapp et al., 2009; Nakazawa et al., 2009; Ross et al.,

1996).

The PCKT has not been used as frequently among researchers as the PCQN (Prem

et al., 2012). This is most likely due to the recent development of the instrument.

However, it has been demonstrated to be valid and reliable for use, and can be an

additional tool to assess PC knowledge among nurses and other healthcare professionals.

Perceived competence

Brazil et al. (2012) performed a quantitative cross-sectional design study.

Researchers utilized the Self-Efficacy in End-of-Life Care (S-EOLC) Survey to examine

nurses’ perceived competency to care for dying patients in LTC facilities. The S-EOLC

Survey contains the Self Efficacy in Palliative Care (SEPC) Survey and the

Thanatophobia Scale. The researchers found that nurses were more confident in patient

management than multidisciplinary teamwork or communication when dealing with the

patients in LTC facilities (Brazil et al., 2012). Kaasalainen et al. (2007) conducted a

qualitative descriptive design with focus groups at three LTC facilities. The investigators

examined nurses’ perceptions around providing palliative care for dementia patients in

LTC facilities. Nurses viewed patients’ general deterioration of health as the main factor

that a patient was palliative, and the nurses’ aim was to facilitate a “good death” for

patients with dementia while trying to manage multiple demands and handle
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environmental issues. The nursing staff and families of dying patients expressed a need

for supportive and educational initiatives which supports a need for increased

competency to provide palliative care (Kaasalainen et al., 2007).

Hall, Goddard, Stewart, and Higginson (2011) conducted a qualitative design

study at nine care homes in London. The sample consisted of nine care home managers,

eight nurses, nine assistants, 11 residents, and seven of the residents’ families which were

involved in the Gold Standards Framework for Care Homes in London. The study

examined the benefits and barriers to the Gold Standards Framework for Care Homes

(GSFCH) in palliative care. Key tasks of the GSFCH are the 7 Cs: communication,

coordination, control symptoms, continuity, continued learning, carer support, and care of

the dying. The benefits of the GSGCH were supportive care registers, coding predicted

stage of illness, and advance care planning. Hall et al. (2011) found that when a nurse in

the Gold Standards Framework for Care Homes (GSFCH) could not discuss death, the

nurse may not demonstrate confidence/competency to practice palliative care.

Thompson et al. (2011) implemented a quantitative pre-test and post-test design

study. During Phase One, the sample consisted of 717 staff from 26 nursing homes.

During Phase Two, the sample consisted of 2779 staff from 85 nursing homes. The

investigators utilized the Palliative Care Survey (PCS) to measure the extent to which

nursing home staff engages in palliative care practices and have knowledge consistent

with a good EOL. Investigators found that what staff actually does as opposed to what

they think they do or think they are supposed to do are separate entities. Investigators also

found that the PCS captured variation in staff’s behavior and knowledge of palliative care

(Thompson et al., 2011).

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Kelly et al. (2011) conducted a quantitative comparative longitudinal design

study. The sample consisted of 351 California-based nurses and other staff who worked in

LTC facilities, skilled nursing facilities and hospice facilities that provided care to the

geriatric population. Investigators found in the End of Life Nursing Education

Consortium (ELNEC) Geriatric “train the trainer” project that LTC staffs need and want

EOL training and education. The project enhanced EOL education, skills, knowledge, and

confidence for all staff at all levels (Kelly et al., 2011).

Evans (2015) conducted a quantitative descriptive cross-sectional study to

examine rural and urban nurses’ knowledge of palliative care and confidence/competency

to provide palliative care for end of life patients in Long Term Care facilities. The study

subjects responded below 50% on the Palliative Care Knowledge Test (PCKT). A

statistically significant difference was found between the PCKT subset of gastrointestinal

and age. Registered nurses had more total knowledge of palliative care on the PCKT than

the licensed practical nurses. No statistical significant difference was noted on the Self-

Efficacy in Palliative Care (SEPC) Survey between the rural and urban subjects. The

study revealed that rural and urban nurses lacked knowledge of palliative care, but had a

perceived confidence/competency to provide palliative care (Evans, 2015).

Knowledge and Perceived Competence or Practices

Unroe, et al., (2015) conducted a study comparing palliative care knowledge and

practices across Nursing Home staff roles, and to examine relationships between facility

characteristics and scores. Results revealed that CNAs had significantly lower practice

and knowledge scores compared to LPNs, RNs, and SWs. LPNs had significantly lower
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psychological, end-of-life, and total knowledge scores than RNs. Although knowledge

about physical symptoms was uniformly high, end-of-life knowledge was notably low for

all staff. A one-point higher facility star rating was significantly associated with a 0.06

increase in family communication score. Higher penetration of hospice in the NH was

associated with higher end-of-life knowledge. Sixty-two percent of respondents stated

that, with additional training, they would be interested in being leaders in palliative care.

A recent study conducted by Ingwu et al. (2016), examined the knowledge and

practice of end of life care (EoLC) among nurses working at the University of Nigeria

Teaching Hospital, in Enugu. The results showed that 123 respondents (94.6%) had

knowledge of EoLC as care given to terminal state of life and or a dying person. Findings

also showed the practice of EoLC with a mean score of 3.6±2.8 and inadequate

manpower and lack of experience with the mean 2.9±1.6 and 2.9±1.5 respectively, as

factors negatively influenced their practice of EoLC.

Summary

A major gap in the literature was the definition of palliative care, and palliative

care was used interchangeably with hospice and end of life care. When there was not a

definitive definition of palliative care, the research may have focused on concepts other

than the philosophy and principles, of palliative care, management of pain and other

symptoms, the spiritual and the psychosocial aspects of care. The literature reviewed

found that nurses lack knowledge of palliative care (Brazil et al., 2012; Prem et al., 2012;

Ross et al., 1996). When nurses lack knowledge of palliative care, nurses may lack the
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competency to provide palliative care (Brazil et al., 2012; Hall et al., 2011; Kaasalainen

et al., 2007).

A review of the literature was performed to examine nurses’ knowledge of

palliative care that was measured utilizing the Palliative Care Knowledge Test (PCKT)

(Nakazawa et al., 2009) and the Palliative Care Quiz for Nurses (PCQN) (Ross et al.,

1996). The knowledge of palliative has been measured most frequently with the PCQN.

The validity and reliability of the PCQN was established in 1996, but the definition of

palliative care does not follow the WHO (2014) definition of palliative care (Nakazawa et

al., 2009). The definition of palliative care utilized in the PCKT (Nakazawa et al., 2009)

reflects the most recent definition of palliative care (WHO, 2014). This is the reason why

the PCKT will be utilized for this study. Perceived confidence/competency to provide

palliative care and end of life care among nurses was also reviewed as well.

There are limited studies that investigated nurses’ knowledge of palliative care in

the Philippines. The majority of the studies examined nurses’ knowledge of palliative

care that was conducted outside of the Philippines (Brazil et al., 2012; Prem et al., 2012;

Ross et al., 1996). No studies examined the relationship between knowledge and

perceived competence on palliative care concurrently either (Brazil et al., 2012; Hall et

al., 2011; Kaasalainen et al., 2007). There is a gap in the literature regarding the

relationship between nurses’ knowledge and perceived competence to provide palliative

care to end of life patients.