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FACTORS ASSOCIATED WITH THE PERCEPTIONS OF PHYSICIANS AND
PATIENTS REGARDING DISCLOSURE OF DEATH AND POOR
PROGNOSIS IN ZAMBOANGA CITY MEDICAL CENTER
A THESIS PRESENTED TO
THE FACULTY OF THE GRADUATE SCHOOL
ATENEO DE ZAMBOANGA UNIVERSITY
SCHOOL OF MEDICINE
ZAMBOANGA CITY
IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTERS IN PUBLIC HEALTH
BY
MARIA MONIQUE THERESITA M. SOLIVEN
APRIL 2016
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APPROVAL SHEET
This research entitled FACTORS ASSOCIATED WITH THE PERCEPTIONS OF
PHYSICIANS AND PATIENTS REGARDING DISCLOSURE OF DEATH AND POOR
PROGNOSIS IN ZAMBOANGA CITY MEDICAL CENTER, prepared and submitted byMARIA MONIQUE THERESITA M. SOLIVEN in partial fulfilment of the
requirements for the degree of MASTERS IN PUBLIC HEALTH, is hereby accepted.
_______________________________________
Fortunato L. Cristobal, MD, MPH, MHPEd
Adviser
Approved by the Oral Examination Committee with a grade of PASSED.
______________________________
Rosemarie S. Arciaga, MD, MSc
Chairperson
_______________________________
Servando D. Halili, Jr., MA, PhD
Member
__________________________ _____________________________________
Jejunee P. Rivera, MD, MPH Norvie T. Jalani, MD, MPH
Member Member
ACCEPTED in partial fulfilment of the requirements for the degree of Masters in Public
Health
____________________________________________
Fortunato L. Cristobal, MD, MPH, MHPEdDean, School of Medicine
Ateneo de Zamboanga University
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ACKNOWLEDGEMENTS
All praises and thanks be to God Almighty, for the sustenance, strength, and guidance He
provided in the completion of this paper. To Him the researcher offers all glory and honor.
This paper would not have materialized without the immeasurable help provided by the
following:
To theAteneo de Zamboanga University School of Medicine, for providing her with the
opportunity to carry out the schools mission to shed light on important public health issues that
would help provide solutions for the welfare of many.
ToDr. Fortunato Cristobal, her research adviser, for always believing in the potential of
this research endeavor, for his encouragement to take the courage of working on this topic, for
the invaluable guidance, and for tirelessly refining the details of this paper.To the other members of the panel,Dr. Rosemarie Arciaga, Dr. Ben Halili, Dr. Jejunee
Rivera andDr. Norvie Jalanifor sharing their insightful comments and suggestions to further
improve this paper.
To Dr. Barbara Amity Flores, Family Medicine consultant from Veterans Memorial
Medical Center, for allowing her to conduct a similar study in a Zamboanga setting and for
providing invaluable knowledge and support during the course of the study.
To the administration and staff of Zamboanga City Medical Center headed by Dr. Romeo
OngandDr. Leila Estrella for allowing her to conduct the study in their prestigious institution.
To Dr. Frederick Iturralde, Dr. Rouella Balagot, Dr. Aisa Tahil and Dr. Felicita
Reluya for providing her with insights and sharing their experiences that provided depth and
substance to this paper.
To Dr. Norvie Jalani, who deserves to be thanked twice (or many times) for always
sharing her time, efforts and invaluable expertise in statistics.
To her classmates, Dr. Mark Feliciano and Dr. Nhaf Ali, for tirelessly assisting her
during data collection, Dr. Hissam MusanipandDr. Monsie Guingonafor enlightening her in
the data processing and analysis, and to ADZU-SOM Batch 2015 Dreamers for the endless
encouragement and support that led to the fruition of this paper.
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Lastly, the researcher thanks her family: her father, mother, and sisters, for the love,
material and moral support, relentless encouragement and understanding of the sacrifices needed
to complete this paper. To her grandfather and grandmother, whose dreams were to see the
researcher complete her masters in public health, your love and support were felt in every step of
this endeavor.
In all humility, the researcher dedicates this piece of work to Him and to the beautiful
people mentioned above.
MA.MONIQUETHERESITAM. SOLIVEN
April 2016, Zamboanga City Philippines
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ABSTRACT
This study aims to determine the physicians and patients perceptions on death and disclosure of
poor prognosis and determine the association to socio-demographic variables, illness severity
and physicians training profile to the respondents perceptions. A total of 42 resident physicians
and 240 patients responded to a Likert-type questionnaire regarding the general concept and
concerns of death and dying, preferences of disclosure practices and perceived roles of
physicians in end-of-life care. Descriptive statistics by means of frequency distribution was used
to analyze the Likert-type items. Multiple logistic regression was utilized to determine the
association of the outcome variables to the exposure variables. Physicians perceptions
generally coincide with patients perceptions on their views that death is a natural part of life;
that patients want to be given timely and detailed information about their prognosis; the more
appropriate person to deliver bad news; the role doctors play in caring for terminally-ill patients
and the need for physicians to be trained on how to conduct proper disclosure. However,
physicians have the misperception that patients do not want to be told about the news of poor
prognosis, when on the contrary, patients want to be informed. Another misperception of
physicians is the notion that hope is destroyed when a patient is told about poor prognosis. This
proves to be false for majority of the patient respondents. Association between physician
perceptions and socio-demographic and training profiles is significant for age group and
experience of difficulties in disclosure. Association between patient perceptions and socio-
demographic profile and illness severity is significant for age group, Islam religion, Bisaya
ethnic group and severe illness. Knowing the perceptions would lead to effective communication
of death and dying which would allow patients to make more informed decisions, attain better
palliative care and have an opportunity to achieve proper closure.
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TABLE OF CONTENTS
Page
APPROVAL SHEET i.
ACKNOWLEDGEMENT ii.-iii.
ABSTRACT iv.
LIST OF FIGURES v.
LIST OF TABLES v.-vi.
CHAPTER
1 THE PROBLEM AND ITS SETTING
a.) Background of the Study 3-5
b.) Related Literature 5-7
c.) Objectives 8
d.) Conceptual Framework 9
e.) Significance of the Study 10
f.) Scope and Delimitation of the Study 10-11
g.) Definition of Terms 11-12
2 METHODOLOGY
a.) Research Design 13
b.) Study Setting 13
c.) Respondents 13-14
d.) Study Population and Sampling Design 14
e.) Research Instrument 14-19
f.) Data Gathering Procedure 19-20
g.) Data Treatment 20-21
3 RESULTS, INTERPRETATION AND
DISCUSSION 22-56
4 SUMMARY, CONCLUSION AND
RECOMMENDATIONS 57-60
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BIBLIOGRAPHY 61
APPENDIX 62-77
CURRICULUM VITAE 78
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LIST OF FIGURES
Page
Figure 1. Conceptual Framework 9
LIST OF TABLES
Page
Table 1. Socio-demographic profile of study subjects in Zamboanga CityMedical Center, 2016
22
Table 2. Training profile among resident physicians inZamboanga City Medical Center, 2016
23
Table 3. Illness severity among patient respondents inZamboanga City Medical Center, 2016 24
Table 4. Perceptions of resident physicians on death and disclosure ofprognosis
25
Table 5. Full model of variables associated with physicians perceptionson patient preference to have disclosure done by a family
member
32-33
Table 5.1. Reduced model of variables associated with physicians
perceptions on patient preference to receive disclosure from afamily member
72
Table 6. Full model of variables associated with physicians perceptionson the need for training on disclosure of poor prognosis and death
34
Table 6.1. Reduced model of variables associated with physiciansperceptions on the need for training on disclosure of poor
prognosis and death
72
Table 7. Summary Table of final models of variables associated with
physicians perceptions on death and disclosure of poorprognosis
35
Table 8. Perceptions of patients on death and disclosure of poor prognosisTable 9. Full model of variables associated with patients perceptions on
difficulty in discussing death and dying
37
43
Table 9.1 Reduced model of variables associated with patients
perceptions on difficulty in discussing death and dyingTable 10. Full model of variables associated with patients perceptions on
personal discomfort in discussing death and dying
73
44
Table 10.1 Reduced model of variables associated with patientsperceptions on personal discomfort in discussing death and
dying73
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Table 11. Full model of variables associated with patients perceptions onmaintaining hope even in the face of poor prognosis
45
Table 11.1 Reduced model of variables associated with patients
perceptions that hope is maintained even in the face of poor
prognosis
74
Table 12. Full model of variables associated with patients preference to
be informed of poor prognosis
46
Table 12.1 Reduced model of variables associated with patients
preference to be informed of poor prognosis
74
Table 13. Full model of variables associated with patients preference to
have full disclosure of prognosis
47
Table 13.1 Reduced model of variables associated with patients
preference to have full disclosure of poor prognosis
75
Table 14. Full model of variables associated with patients preference to
have disclosure of poor prognosis at the earliest possible time
48
Table 14.1 Reduced model of variables associated with patients
preference to have disclosure of poor prognosis at the earliestpossible time
75
Table 15. Full model of variables associated with patients preference toreceive disclosure from a doctor
49
Table 15.1 Reduced model of variables associated with patientspreference to receive disclosure from a doctor
76
Table 16. Full model of variables associated with patients preference toreceive disclosure from loved one or family member
50
Table 16.1 Reduced model of variables associated with patients
preference to receive disclosure from a family member
76
Table 17. Full model of variables associated with patients perceptions oncollaborative decision-making for end-of-life care
52
Table 17.1 Reduced model of variables associated with patients
perceptions on collaborative decision-making for end-of-lifecare
77
Table 18. Summary Table of final models of variables associated withpatients perceptions on death and disclosure of poor prognosis
53
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CHAPTER 1
THE PROBLEM AND ITS SETTING
Background of the Study
Communicating particularly distressing news is considered demanding to both
physicians and patients. Disclosure of poor prognosis and death is both an important,
albeit a disputable, issue wherein in the past, a choice arises whether to tell the patient
about their prognosis or in recent times, it has been focused on what information to give
and how to convey it. Research reveals that majority of cancer patients in the Western
world prefer to receive detailed information about their condition and expected outcome,
however their information needs vary depending on the stage of their disease.
Nevertheless, terminally ill patients often have misunderstandings regarding the
prognosis of their illness as well as the goals of treatment. This may be attributed to
doctors disclosure practices wherein they are reluctant to communicate particularly
distressing news: doctors may avoid mentioning death or dying even when the patients
suffering is severe and prognosis is poor, they may become less detailed in providing
prognostic information or simply because of their concern that the information may be
contrary to the patients wishes by making them lose hope or that they become upset.
However, poor disclosure practices can have detrimental consequences for patients, their
families and friends, and the entire health care team, particularly on making appropriate
decisions for end-of-life care.
Both doctors and patients express that optimism and hope must be sustained while
in the process of honestly delivering distressing news of poor prognosis and death.
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However, it has been stated that there is a delicate balance between realistically fostering
hope and unethically creating unrealistic expectations of longevity. Furthermore, hope is
a concept that can hold different meanings to each individual. In a similar way, prognosis
is a term often linked with life expectancy, encompasses the future course of the disease
and how this will impact on the quality of life of the patient.
Despite the issues surrounding the topic on disclosure of poor prognosis and death,
research is lacking in determining the perceptions of physicians and on the preferences of
patients on the disclosure of death and poor prognosis. Much of the literature has focused
on how to break bad news. There is a lack of evidence-based information on discussing
poor prognosis. Furthermore, there is an association on demographic, psychological,
disease variables, for example, age, sex, civil status, religiosity, educational level, anxiety
and disease status to patient preferences for prognostic information. However, these must
be further clarified within the context of the physicians perceptions.
This study aims to determine the physicians and the patients perceptions on the
issues of death and disclosure of poor prognosis. These issues include the following:
acceptance of death as a natural part of the circle of life, desire to accept news of poor
prognosis, preference to the more appropriate person to deliver bad news, desire whether
to be told of poor prognosis at the earliest possible time, desire to postpone the discussion
of death, and views on maintaining hope in the face of poor prognosis. Determining both
the physicians and the patients perceptions on the disclosure of death and poor prognosis
could contribute to a more effective and appropriate communication between the two
parties. Effective communication of death and dying could allow patients to make more
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informed decisions, attain better palliative care and have an opportunity to achieve proper
closure.
Related Literature
One of the main goals of medicine is the prevention of disease and forestalling
death. Moreover, just as importantly, medicine also includes the relief of pain and
suffering and the promotion of a peaceful death (Callahan, 1998). For patients who are
terminally ill, it is imperative for the physician to initiate timely and sensitive discussions
on the patients end-of-life care as these discussions clarify treatment options, enhance
social support and eventually allow patients and their families to achieve meaningful
closure (Quill, 2000). However, physicians are oftentimes apprehensive or even unable to
disclose to patients that they are likely approaching the end of their lives. This is
attributed to medicines inherent prognostic uncertainty and of the physicians fears
that patients will perceive that they are giving up, thus, distressing patients by
eliminating hope (Quill, 2000). Eventually, physicians would resort to reporting fewer
facts and less detail on the prognostic information, which frequently lead to patients not
having a clear understanding of their illness, prognosis and goals of treatment. In the long
run, withholding information, albeit well intentioned in avoiding unnecessary emotional
stress, can derail appropriate treatment preferences and also delays patients and their
families in their capacity to cope (Hancock, 2007).
Physicians subscribe to the idea of full disclosure of poor prognosis (Marwit, et
al, 2002) but find it challenging to practice. Reasons include perceived lack of experience
and training, stress, lack of time, fear of negative impact on the patient, uncertainty of
prognostication, requests from family and friends to withhold information and feelings of
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inadequacy and hopelessness due to the futility for a curative treatment (Hancock, 2007).
A physicians background and personality often determines how he or she conveys bad
news (Marwit, et al, 2002). More importantly, the physicians lack of awareness of
patients desires regarding disclosure of poor prognosis also proves to be a limitation in
the effective physician-patient communication (Flores, et al. 2011).
A reasonable body of literature addresses physicians perceptions and practices on
disclosure of poor prognosis. However, remarkably fewer studies have been done on
patients variables, particularly their preferences on communicating poor prognosis
(Marwit,et al
, 2002). Attention to patient preferences, which includes advanced
planning, positive communication, treatment planning, patient satisfaction, and outcome,
highly improves the correspondence between patient-determined preference and
physician practice, making it easier to assist patients in the transition from chronic illness
to terminal status. The more a physician understands the patients life circumstances and
needs, the more likely he/she is to anticipate, discuss and ultimately accept the patients
disclosure preferences (Marwit, et al, 2002). When severity of illness and life expectancy
are openly discussed, less patient anxiety and more patient satisfaction were reported
(Flores, 2011).
It is also considered relevant to consider the demographic, personality, situational
and cultural factors of each patient (Marwit, et al, 2002), as these entail for a more
individualized approach in the disclosure of poor prognosis. Hagertys study in 2005
resulted in the majority of patients preferring a realistic and individualized approach and
detailed information when discussing prognosis. Socio-demographic variables of
patients age, gender, educational attainment, civil status, religious affiliation as well as
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personality and situational variables such as previous experience with death, availability
of social support, and cultural factors must be taken into consideration before initiating
the discussion of poor prognosis (Marwit, et al, 2002).
A local study in 2011 was initiated by Flores et alin University of the Philippines
- Philippine General Hospital wherein it was found out that physicians perceptions
generally coincided with the patients preferences regarding: a) patients desire to accept
news of poor prognosis, b) the more appropriate person to deliver the bad news, and c)
the desire for disclosure but postponing discussions of death as much as possible. In
contrast, different responses were given with regards to death being a natural part of the
circle of life. Physicians had a more diverse response on maintaining hope in the face of
poor prognosis, contrary to the patients response that poor prognosis will not destroy
hope. Based on the socio-demographic factors, older patients prefer loved ones to deliver
the bad news. Male patients prefer not to know that they are terminally ill or dying. Those
who attained elementary education do not want disclosure of poor prognosis and are
more likely to postpone discussions of death. This study serves as a baseline for future
researchers on disclosure and end of life care. The researchers recommended using a
more appropriate method of qualitative hospice related studies using interview-type
survey or focused group discussion as well as further explanation of some of the answers
in the survey. It would also be beneficial to include patients from other clinical
departments (except for pediatrics department due to the use of a different protocol in
disclosure of poor prognosis).
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General Objective:
To determine the perceptions and the associated physician and patient factors on the
disclosure of death and poor prognosis in Zamboanga City Medical Center
Specific Objectives
a. To determine resident physicians and patients perceptions on the following
themes on death and disclosure of poor prognosis:
general concept and concerns about death and dying;
preferences of patients on disclosure practices;
the perceived roles of the physician in end-of-life care
b. To determine the association of socio-demographic variables and training
experiences to physicians general concept and concerns about death and dying,
perceived preferences of patients on disclosure practices and the perceived roles
of the physician in end-of-life care;
c. To determine the association of socio-demographic variables and severity of
illness to the patients general concept and concerns about death and dying,
preferences of patients on disclosure practices and their perceived roles of the
physician in end-of-life care
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(
ConceptualFramework
Figure 1. Conceptual Framework
Physicians and patients have their own perceptions on death and poor prognosis.
These perceptions may vary from one person to another due to their sociodemographic
profile, which includes: age, gender, civil status, religion, ethnic group and educational
attainment. The physicians perceptions may also be influenced or affected by his or her
level of training and experience in the care of patients with poor prognosis. The patients
perceptions may also be influenced by the severity of his or her illness. Determining the
perceptions and the associated physician and patient factors on the disclosure of death
and poor prognosis would help in the disclosure practices of physicians. By becoming
aware of ones own perceptions as well as being informed of the patients perceptions,
one can proceed in having the patients needs recognized, establish mutual goals, create a
collaborative relationship between the patient and the physician, and eventually prevents
delays in the patients and their families in their capacity to cope.
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)*
Significance of the Study
The existence of problems in the disclosure of poor prognosis largely contributes to
the failure to provide appropriate information about palliative care and prognosis causing
unnecessary pain and suffering. Studies show that clear understanding of the patients
perceptions and preferences in the disclosure of poor prognosis allow for physicians to
provide a more holistic approach in helping patients approach death in a peaceful manner.
This study is beneficial for primary health care physicians to initiate end-of-life
discussions earlier and more systematically which would allow patients to make more
informed decisions, achieve better palliation of symptoms and have more opportunity to
gain closure.
Scope and Delimitation of the Study
This study was conducted at the four (4) major departments of Zamboanga City
Medical Center (ZCMC) wherein the perceptions of patient respondents seen at both
inpatient and outpatient basis were studied. Patients from other clinical departments were
excluded, such as the patients in the pediatrics department due to the different protocol
for disclosure of poor prognosis. The parents, not the patients themselves, are the
recipients of prognostic information. Minor departments, such as radiology,
otorhinolaryngology, and ophthalmology were also not included in the study. The
perceptions of resident physician subjects who were employed at ZCMC at the time of
study from the four abovementioned departments were also determined. However, the
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))
perceptions of the patients family members or primary caregivers on death and
disclosure of poor prognosis were not included in this study due to time constraints.
Definition of Terms
1. Perception- the process of assessing information in your surroundings; involves
becoming aware of ones environment in a way that is unique
(McGaan, 2016); organization, identification, and interpretation of
sensory information in order to represent and understand the
environment (Schacter, 2011)
2. Disclosure the release or divulgence of information
3. Prognosis a projection of the probable course and outcome of a particular
condition in terms of morbidity and mortality, based on stage and
symptoms, and previous experience with patients with the same
disease, with or without treatment
4. Poor Prognosis the prospect of survival and recovery from a disease is low (Law
and Howick, 2016)
5. Without higher education an individual who has not reached tertiary or
collegiate level in his or her schooling
6. With higher education an individual who has reached or completed tertiary or
collegiate level in his or her schooling
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)+
7. Mildly ill has a score of 25-49 according to the Duke University Severity
of Illness Scoring Key (DUSOI) (Parkerson et al, 1995)
8. Moderately ill has a score of 50-74 according to DUSOI.
9. Severely ill has a score of 75-100 according to DUSOI.
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CHAPTER 2
METHODOLOGY
A.Research Design
This is an analytical cross-sectional study wherein the perceptions of physicians
and patients on death and disclosure of poor prognosis will be determined.
Association of patient perceptions to socio-demographic profiles age, gender, civil
status, religion, ethnic group and educational attainment of patients and severity of
illness as well as the association of physician perceptions to socio-demographic
profile and training profile will also be investigated.
B.Study Setting
This study was conducted at the wards and outpatient clinics in the four (4) major
departments in Zamboanga City Medical Center Internal Medicine, Family
Medicine, General Surgery and Obstetrics and Gynecology.
C.Respondents
The patient respondents are from Zamboanga City Medical Center (ZCMC) and
seen at both inpatient and outpatient basis in four (4) Major departments Internal
Medicine, Family Medicine, General Surgery and Obstetrics and Gynecology. The
patient is willing to participate in the study, gives his/her written consent and can
verbally communicate in Filipino. Patient subjects below 19 years old, illiterate, non-
cooperative and/or diagnosed with mental disorders are not included in the study.
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Resident physician subjects are those currently employed at ZCMC from four (4)
abovementioned departments, are willing to participate and will give his/her written
consent to participate in the study. Resident physicians from other clinical
departments are excluded, such as the pediatrics residents and their patients due to the
different protocol for disclosure of poor prognosis. The parents, not the patients
themselves, are the recipients of prognostic information. Resident physician subjects
who neither is willing to participate nor gives his/her consent are excluded from the
study.
D.Study Population and Sampling Design
The sampling size requirement is 212 patients (or 53 patients per department),
determined using Epi Info Statcalc application with 4.0% confidence interval and 90%
power. Purposive sampling method was utilized for the patient respondents. A total
count of 42 resident physicians from the four major departments was included in the
study.
E.Research Instruments
Questionnaire Design
In the development of the questionnaires, the organization and the wording of the
questions were carefully considered because it was recognized that the topic of disclosure
of poor prognosis and death may be particularly sensitive.
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1. Questionnaire for Patients
Part A of the questionnaire requested demographic information, including
variables that previous research (Flores et al, 2010) suggested might influence
perceptions on disclosure of death and poor prognosis. Questions about the patients age,
gender, religion, ethnic group and educational attainment were included.
Part B consisted of five questions regarding the patients illness: the first question
asked what their illness is, the second asks how long the patient knows about his illness,
third asks the degree of impairment in the patients daily activities, fourth asks the how
many times a year that the patient requires hospitalization and lastly, the fifth question
asks if there will be a likelihood for the improvement or the worsening of the patients
condition within the next year. These questions are essential in answering each
component of the Duke University Severity of Illness (DUSOI) Scale developed by
Parkerson et al in 1995, which would determine the severity of the patients illness.
Part C consisted of twelve statements regarding three main themes: general
concept and concerns about death and dying, preferences of patients on disclosure
practices, and the perceived roles of the physician in end-of-life care. Seven out of the 10
questions were taken from the validated survey questionnaire developed by Flores, et al
in 2010 in a similar study conducted at UP-PGH. Five of the remaining questions were
sourced from other studies through literature review. The questions on the extent of
disclosure and the need for physicians to undergo training in how to break bad news were
included from the questionnaire of Wittmann et al in 2010. With regards to the preference
of patients to have a collaborative role in medical decision making, the question was
lifted and paraphrased from the study of Elkin, et al in 2007. The question regarding
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patients perceptions on the provision of holistic care from physicians was taken from a
2006 study conducted in Malaysia by Loh. In addition, 16 patients were interviewed to
gain more content, thus confirming the themes for the questionnaire and an additional
question on patients difficulty in discussing death was formulated. The patients
perceptions were measured using a 4-point Likert format with 1 indicating strongly
disagree, 2 is disagree, 3 is agree and 4 is strongly agree. Notably, there are no
options for a neutral response, which would lead the respondents to respond either
positively or negatively at varying degrees.
The initial format of the questionnaire underwent review and revisions by experts on
palliative care and hospice medicine. The survey tool for patients was translated to
Filipino for easier comprehension. Pretesting of the tool was conducted to determine
whether the questions were understandable, comprehensive and represents the content of
the study. To establish the tools reliability, a pilot test was carried out. Data was
collected from 30 subjects who were not included in the sample.
2. Duke University Severity of Illness Scale (DUSOI)
The Duke University Severity of Illness Checklist (DUSOI) is an instrument
designed by Parkerson et al to measure a patients severity of illness based on the
application of clinical judgment. This can be used directly by the provider at the time of
the patient encounter and also indirectly by medical record audit at a later date. The
parameters for judging severity include symptom status, complications, prognosis
without treatment and treatability. Symptom status is referred as the presence or absence
of symptoms and their level of severity on the day of the visit and during the preceding
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week. Complication is defined as the presence of health problems which are secondary to
the problem being managed. Prognosis is assessed in terms of either the level of disability
or threat to life which a health problem holds for the patient during the next six months, if
untreated. Disability refers t o any limitation of a persons ability to function in everyday
life. Treatability is based upon the need for treatment and the expected response to
treatment. Studies have shown that the DUSOI tool makes it possible to examine
particular problems management for differential severity and the association of severity
to different management practices. It was also found out that the DUSOI is an acceptable
tool for use in general practice because of the large proportion of problems managed for
which the DUSOI ratings were completed. For example, in the scoring of the health
problem, Gout, the patients symptom score was 3 because gout was causing
moderate symptom severity; the complication score was 1 because the presence of
complications was questionable; the prognosis score was 3 because there was
major disability; and the treatability score was 2 because the expected response to
treatment was good. The total score was divided by 16 then multiplied by 100 to
generate a value between 0-100, as indicated by the bottom of the scoring form. A score
of between 0-24 indicates none or questionable illness, a score of 25-49 indicates mild
illness, 50-74 indicates moderate illness and a score of 75-100 indicates severe illness.
The score for gout is 56, which indicates moderate illness.
3. Questionnaire for Physicians
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"(
Part A of the questionnaire for physicians, like the questionnaire for patients, also
requested demographic information, such as the physicians age, gender, religion, and
ethnic group. The training profile of the resident physicians included their specialization,
year level, whether or not theyve had clinical experience in disclosure and if theyve had
and are still having difficulties in discussing death and disclosure of terminal illness or
poor prognosis.
Part B of the questionnaire also consisted of twelve statements regarding the three
main themes: general concept and concerns about death and dying, preferences of
patients on disclosure practices, and the perceived roles of the physician in end-of-life
care. Similar to the patient questionnaire, seven out of the 10 questions were taken from
the validated survey questionnaire developed by Flores, et al in 2010 in a similar study
conducted at UP-PGH. Five of the remaining questions were sourced from other studies
through literature review. The questions on the extent of disclosure and the need for
physicians to undergo training in how to break bad news were included from the
questionnaire of Wittmann et al in 2010. With regards to their perception that they must
have a collaborative role with patients in medical decision making, the question was
lifted and paraphrased from the study of Elkin, et al in 2007. The question regarding
physicians perceptions on the provision of holistic care from physicians was taken from
a 2006 study conducted in Malaysia by Loh. In addition, 4 senior resident physicians
were interviewed to gain more content, thus confirming the themes for the questionnaire
and an additional question on the physicians difficulty in discussing death and poor
prognosis was formulated. The physicians perceptions were similarly measured using a
4-point Likert-type items with 1 indicating strongly disagree, 2 is disagree, 3 is
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")
agree and 4 is strongly agree. Likewise, there are no options for a neutral response,
which would lead the respondents to respond either positively or negatively at varying
degrees.
The initial format of the questionnaire also underwent review and revisions by
experts on palliative care and hospice medicine. Pretesting of the tool was conducted to
determine whether the questions were understandable, comprehensive and represents the
content of the study. To establish the tools reliability, a pilot test was carried out. Data
was collected from 5 subjects who were not included in the sample.
F. Data Gathering Procedure
Prior to the data gathering procedure, the researcher sought permission to the
Chief of Hospital of Zamboanga City Medical Center and distributed letters to the heads
of the major departments. Physician respondents were distributed self-administered
survey questionnaires in major departments. As for the patients, the questionnaires were
answered with the assistance of the researcher. This is due to the sensitive content of the
questionnaire and some of the respondents were diagnosed with critical diseases, and
therefore may need assistance in answering the questions. This allows the researcher to
adjust the questions according to verbal or nonverbal cues, builds trust and
understanding, thus, making the respondents more comfortable and more open in
answering the questions being posed, ensures that the respondents were selected carefully
and allows the adaptability to respondent differences. In order to answer the DUSOI
scale, both records review (clinical charts for admitted patients and outpatient forms for
walk-in patients) and interview were conducted in order to classify the patients according
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*+
to the severity of their illness. Once the questionnaires were answered, the corresponding
data were tallied and encoded using the spreadsheet program, Microsoft Excel.
G.Data Treatment
The data inputted in Microsoft Excel were checked and exported for analysis
using STATA software (ver. 13 for Windows). Patient socio-demographic profiles and
severity of illness and physician socio-demographic profiles and training profiles were
described using descriptive statistics frequencies and distributions. Descriptive statistics
are done for the Likert-type items, which are ordinal measurement scale items.
The four-point Likert-type items was collapsed and coded from 1-strongly
disagree, 2-disagree, 3-agree and 4-strongly agree into 0 for strongly disagree
and disagree and 1 for strongly agree and agree. For the patient group, each
survey question was analyzed by demographics such as age, gender, civil status, religion,
ethnic group, educational attainment and severity of illness. Similarly, for the physician
group, each survey question was also analyzed by demographics namely age, gender,
civil status, religion, ethnic group and the physicians training profile. Multiple logistic
regression was the statistical tool used to determine the association of the independent or
exposure variables to the dependent or outcome variables. Simple logistic regression was
done first, to determine the crude association of each exposure variable with the outcome
variable. All the variables with p-value
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*"
exposure variables (p-value
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""
CHAPTER 3
RESULTS, INTERPRETATION AND DISCUSSION
A total of 42 resident physicians from the Family Medicine, Internal Medicine,
General Surgery and Obstetrics and Gynecology Departments and 240 patients seen both
at an inpatient and outpatient basis were included in the study. The succeeding tables will
show the socio-demographic profile of the two groups of respondents, the clinical
experience of resident physicians and the illness severity of the patient respondents.
Table 1. Socio-demographic profile of study subjects in
Zamboanga City Medical Center, 2016
Demographic Profile Resident Physicians
n=42
n(%)
Patients
n=240
n(%)
Age
Range
Mean Std. Dev
!35 years old
36-50 years old
51-64 years old
"65 years old
26-42 years old
324.11
32 (76.19%)
10 (23.81%)
-
-
19-91 years old
4617.23
75 (31.25%)
69 (23.81%)
56 (23.33%)
40 (16.67%)
GenderMale
Female
14 (33.3%)
28 (66.7%)
95 (60.4%)
145 (39.6%)
Civil Status
Single
Married or Cohabiting
Widow/Widower or Separated
21 (50%)
21 (50%)
-
64 (26.67%)
144 (60.00%)
32 (13.33%)
Religion
Roman Catholic
Islam
Others (Protestant, none)
10 (23.8%)
24 (57.1%)
8 (19.05%)
154 (64.17%)
68 (28.33%)
18 (7.50%)
Ethnic Group
ZamboanguenoBisaya
Tausug
Others
8 (19.1%)6 (14.3%)
21 (50%)
7 (17.7%)
96 (40%)67 (27.9%)
54 (22.5%)
23 (9.6%)
Highest Educational Attainment
Some High School or Less
High School Graduate
Some College
College or More
-
-
-
-
134 (55.83%)
40 (16.67%)
36 (15.00%)
30 (12.50%)
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"#
Table 1 shows that the mean age for resident physicians was 32, the youngest was
26 and the oldest was 42. As for patients, the mean age was 46, the youngest was 19 and
the oldest was 91. Females outnumber males in both groups. Majority of the patient
respondents are married (60%). As for the physicians, half of the respondents were
married and half were single. Majority of the patient respondents were of the Catholic
faith (64.2%), while majority of the physicians belong to the faith of Islam (57.1%).
Zamboanguenos outnumber other ethnic gro ups among the patient respondents (40%).
On the other hand, majority of the resident physicians belong to the Tausug ethnic group
(50%). The highest level of education attained by majority of patient respondents reached
high school level (24.2%).
Table 2. Training profile among resident physicians in
Zamboanga City Medical Center, 2016
Training Profile
Resident Physicians
n=42
n(%)
Specialization
Family Medicine
Internal Medicine
General Surgery
Obstetrics and
Gynecology
4 (9.5%)
17 (40.5%)
11 (26.2%)
10 (23.8%)
Year Level in Training
1stYear
2nd
Year
3rd
Year
4th
Year
5thYear
18 (43%)
14 (33.3%)
4 (9.5%)
5 (11.9%)
1 (2.4%)
With clinical experience?
Yes
No
41 (97.6%)
1 (2.4%)
Encountered difficulties/problems with
disclosure?
Yes
No
32 (76.2%)
10 (23.8%)
Still have difficulties/problems with
disclosure?
Yes
No
16 (50%)
16 (50%)
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"$
Majority of the physician respondents were from the Internal Medicine
department, followed by residents from General Surgery, Obstetrics and Gynecology and
Family Medicine departments. Most of the residents were in their first and second year of
training at 43% and 33.3% respectively. Almost all of the physician respondents (97.6%)
have had clinical experience in the care of terminally ill and dying patients. Majority
(76.2%) have encountered difficulties or problems with disclosure of terminal illness or
death in the past. Of these, half of the respondent population still find it to be a problem.
Table 3. Illness severity among patient respondents in
Zamboanga City Medical Center, 2016
Most of the patients were classified to be moderately ill, followed by mildly ill
and severely ill patients at 50%, 35.4% and 14.6% respectively. Patients were classified
according to the Duke University Severity of Illness Scale (DUSOI). See Appendix.
Severity of Illness
Total
n=240
n(%)
Mildly Ill
Moderately Ill
Severely Ill
85 (35.4%)
120 (50%)
35 (14.6%)
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"%
I. Perceptions of physicians on death and disclosure of poor prognosis
Table 4. Perceptions of resident physicians on death and disclosure of prognosis
*Reverse wording of questions
Perceptions amongResident Physicians
n=42
4
StronglyAgree
n(%)
3
Agreen(%)
2
Disagreen(%)
1
StronglyDisagree
n(%)
Theme A: General Concept and Concerns About Death and Dying
Death is a natural part
of life36 (85.7%) 6 (14.3%) - -
Has difficulty in
discussing death and
dying
3 (7.1%) 24(57.1%) 10(23.8%) 5 (11.9%)
Has personal
discomfort in
discussing death and
dying
6 (14.3%) 21(50%) 10(23.8%) 5 (11.9%)
*Disclosure of poor
prognosis will destroy
hope
16 (38.1%) 17(40.5%) 8(19.1%) 1(2.4%)
Theme B. Preferences of Patients on Physicians Disclosure
Practices
*Prefer not to know
about poor prognosis2 (4.8%) 21(50%) 17(40.5%) 2 (4.8%)
Prefer to have full
disclosure of poor
prognosis
28 (66.7%) 10(23.8%) 2(4.8%) 2 (4.8%)
Important to knowprognosis early
26 (61.9%) 13(31%) 2(4.8%) 1 (2.4%)
Prefer disclosure from
a doctor24 (57.1%) 16(38.1%) 1(2.4%)
1 (2.4%)
Prefer disclosure from
a loved one4 (9.5%) 17(40.5%) 18(42.9%) 3 (7.1%)
Theme C. Perceived Roles of the Physician in End-of-Life Care
Collaborative
decision-making with
patients
29 (69.1%) 10(23.8%) 2(4.8%) 1(2.4%)
Doctors must provideholistic care for their
patients
38 (90.5%) 4(9.5%) - -
Doctors must be
trained on proper
disclosure of death and
poor prognosis
26 (61.9%) 12(28.6%) 3(7.1%) 1 (2.4%)
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A. General concept and concerns about death and dying
This study revealed that physicians accept that death is a natural part of the cycle
of life with majority of the physicians strongly agreeing (85.7%), the rest agreeing
(14.3%) and none of the respondents disagreeing to the statement. This means that all
physicians are highly aware that death is a natural part of life. The study of Gibbins et al
in 2011 stated that death and dying happens in almost all areas of medicine and almost
all health care professionals will at some point care for dying patients. Resident
physicians are, therefore, aware that as doctors, they would be directly be caring patients
with incurable diseases, which would, more often than not, lead to death.
Despite this awareness, however, more than half of the physicians (57% agree,
14% strongly agree) admit to having difficulty in telling patients that they have terminal
illness or that they are dying. This is in concordance with a study describing that
discussing death is considered taboo within the hospital culture, with doctors wanting
to continue treating (even though they felt it was probably futile) and perceiving that
dying is a failure as there is nothing else to do. (Gibbins et al, 2011). Another study
stated three reasons why discussing prognosis remains to be a challenging task for
physicians: first, because the news of poor prognosis is emotionally difficult; second,
because there is a considerable prognostic uncertainty for seriously ill patients, and third,
physicians often rely on judgment and clinical experience in estimating prognosis
(Apatira et al, 2008). This leads to physicians having difficulties and becoming reluctant
in discussing poor prognosis to seriously ill patients.
Furthermore, more than half of the resident physicians have personal discomfort
when talking about death and dying, with half of the respondents agreeing and around 14
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"'
percent strongly agreeing. This discomfort may stem from the physicians own personal
experience in dealing with death, such as that of a loved one or a chronically ill patient
for which he or she has developed a close bond or the cultural influences on how he or
she handles topics on death. A study by Cassel, et al in 2006 showed that doctors may be
uncomfortable in discussing death because it evokes feelings of their own impotence and
it calls to mind their own mortality. Also, doctors may be concerned that the discussion
on the topic may shock or trouble their patients.
With regards to their views about maintaining hope in the face of poor prognosis,
majority of the physicians (40.5% agreed, 38.1% strongly agreed) believe that hope is
lost when patients are told that they are dying. This can be interpreted that physicians
perceive that when telling patients that they are dying automatically eliminates hope for a
cure. Previous research suggests that the reluctance of physicians to provide prognostic
information is their concern that their words may extinguish a patient and their families
sense of hope. However, evidence suggests that hope is maintained even with truthful
discussions that teach the patient that there is no chance for cure (Mack & Smith, 2012).
Studies also show that involving patients in the prognostic information and decision-
making allowed for empowerment about medical care and overall well-being, which
makes it an important component of hope (Apatira et al, 2008).
B. Preferences of patients on physicians disclosure practices
It is widely accepted that it is the physicians duty to inform and educate patients
if they have severe illnesses with poor prognosis (Elkin et al, 2007). However, majority
of the physicians responded that patients prefer not to know about their poor prognosis
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"(
(50% agree, 4.8% strongly agree). This means that although physicians accept that
patients have the right to know about their prognosis, majority believe that patients
preference lean towards not knowing that they have an illness with poor prognosis. This
does not coincide with the local study done by Flores, et al in 2010, wherein results
revealed that 61% of the physicians perceive that patients wanted to know of their poor
prognosis.
With regards to the amount of prognostic information that patients require,
physicians affirm (66.7% strongly agree, 23.8% agree) that patients must be given full
disclosure of their condition. This means that physicians strongly believe that patients
would want all possible information about their diagnoses. A study by Wittmann et al in
2009 showed, however, that only 35% of the physicians believe that patients require full
disclosure of their prognosis, with majority or 65% believe that patients should be given
as much information as requested or partial disclosure. Various literature reveal that
physicians may have difficulty in practicing full disclosure because they are concerned of
the possible negative psychological effects on the patient. Still, studies have consistently
shown that selective and non-disclosure of poor prognosis led to even greater distress for
the patient and their families (Fallowfield et al, 1999) as compared to providing full
disclosure of the patients condition.
As to the timing of disclosure of poor prognosis, disclosure done at the earliest
possible time was deemed important by majority of the physician respondents (61.9%
strongly agreed, 31% agreed). This further coincides with the results of the local study
done by Flores wherein 95% of the physicians perceive that it is important to know the
prognosis early. This can be interpreted that physicians perceive that having discussions
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")
of disclosure at the earliest possible time is important to enable patients and their families
in understanding and adjusting to their prognosis and allow them to better prepare for the
future.
With regards to the appropriate person to disclose the poor prognosis to the
patients, physicians believe (57.1% strongly agree, 38.1% agree) that patients would
prefer to receive disclosure from a doctor. This is consistent with the findings of Flores
local study wherein 89% agreed that disclosure from a doctor. This may be due to their
belief that doctors felt that they are qualified to provide information on the patients
condition. Physicians are approximately split in their beliefs when it comes to their
perception regarding patients preference to have disclosure done by a loved one or
trusted family member wherein 40.5% agree and 9.5% strongly agree, while 42.9%
disagree and 7.1% strongly disagree. Again, this coincides with the findings of Flores
wherein the physician respondents generally disagree that patients would want to receive
disclosure of poor prognosis from their loved ones. This may be due to the beliefs of
physicians that some misunderstandings regarding the prognostic information may occur
when the task of disclosure is passed on to the patients family members or loved ones.
However, the role of the patients family and loved ones are considered essential by the
physicians, as they are the ones who are more aware of the patients emotional,
psychological, social and spiritual conditions and should be seen as partners in providing
comfort for the patient (Young Ho Un et al, 2004).
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#*
C. Perceived roles of the physician in end-of-life care
When asked about the physicians perceptions on treatment decision-making, most
of the physicians believe (69.1% strongly agreed, 23.8% agreed) that both the doctor and
the patient must share in the crucial responsibility of making a decision on end-of-life
care. This means that physicians believe that a collaborative role of patients is essential as
compared to an active or a passive role in management decision-making. This is further
backed up by studies wherein shared decision making between the physician and the
patient is advocated, with empirical evidence that supports an association between more
collaborative decision making and higher patient satisfaction with the choice of treatment
and management and the medical decision-making process (Elkin et al, 2007).
This study also revealed that physicians believe providing holistic care for
patients who are terminally ill was important with majority of the physicians strongly
agreeing (90.5%), the rest agreeing (9.5%) and none of the respondents disagreeing to the
statement.
In a holistic approach to medicine, it is believed that the patients well-being
relies not just on the physical aspect of the illness, but must be interrelated with the
psychological, emotional, social, spiritual and environmental state (Strandberg et al,
2007). It is therefore of primary importance that doctors must be informed about a
patients whole life situation (von Bultzingslowen et al, 2006) particularly for patients
with poor prognosis.
The last statement revealed that majority of the physicians believe that training is
necessary for physicians in breaking bad news (61.9% strongly agreed, 28.6% agreed).
From this information as well as from other studies such as the study by Baile et al in
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#+
2000 stated that for many clinicians, it can be concluded that additional training in
disclosing unfavorable information to the patient could be useful in improving their
communication skills and increase their confidence in accomplishing this task.
Schildmann et al (2005) found that almost one-third or 63.2% of Foundation Year One
doctors have the opinion that they had received insufficient postgraduate training.
Moreover, techniques for disclosing information in a way that addresses the expectations
and emotions of the patients also seem to be strongly desired by physicians, but rarely
taught (Gibbins et al, 2011).
II. Association of socio-demographic factors and training profile to
physicians perceptions
The dependent variables or the responses of physicians to the statements regarding
the general concept and concerns about death and dying are the following: perceptions on
death as a natural part of life, difficulty and personal discomfort in discussing death and
dying and the maintaining hope in the face of poor prognosis. For the physicians
perceptions on patients preferences for disclosure, the statements are the following:
patients prefer to know about their prognosis, to have full disclosure, to receive
disclosure at the earliest possible time and to receive disclosure from an appropriate
person whether from a physician or a loved one. For the perceptions on the physicians
roles in end-of-life care, the statements are the following: doctors must collaborate with
patients in decision-making, that physicians must provide holistic care for patients and
that there is a need for physicians training for disclosure of poor prognosis. The
independent variables or factors measured are the sociodemographic variables, namely
age, gender, civil status, religion, ethnic group and training and clinical experience of
resident physicians, namely year level, specialization and experience in disclosure of
poor prognosis.
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#"
A.Factors associated with physicians general concept and concerns
about death and dying
Using simple logistic regression between the physicians general perceptions and the
socio-demographic factors, namely age, sex, civil status, religion, ethnic group, as well as
the clinical training factors, namely, specialization, year level and experiences in
disclosure of poor prognosis, did not yield any significant associations. There were also
no significant associations of the socio-demographic and training profile factors to
physicians perceived difficulty in disclosure of poor prognosis, personal discomfort in
discussing death and dying and the physicians views that hope is maintained even in the
face of poor prognosis.
B. Factors associated with physicians perceptions on the preferences of
patients on disclosure practices
Simple logistic regression showed that there were no significant associations between
the socio-demographic and training profile factors of physicians and their perceptions on
patients wanting to be informed of poor prognosis, preferring to have full disclosure,
perceived importance to know prognosis early and the patients preferences of receiving
disclosure from a doctor.
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#$
For the physicians perceptions on patient preference for a family member to do
disclosure, univariate analysis using simple logistic regression was done for each
exposure variable. These are included in the full model, as can be seen in Table 5.
Among the variables, the age group of 36-54 years old was statistically significant (p-
value=0.042). All variables having a p-value of
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#%
Table 6. Full model of variables associated with physicians perceptions on the need
for training on disclosure of poor prognosis and death
* OR odds ratio; CI confidence interval
Variables
Physicians need training on
disclosure of poor prognosis
and death
OR 95% CI p-value
Agreen(%)
Disagreen(%)
Age Group
!35 years old
36-54 years old
29 (69.0%)
9 (21.4%)
3 (7.1%)
1 (2.4%)
1.00
0.93
-
0.088, 10.100
-
0.953
Gender
Male
Female
13 (31.0%)
25 (59.5%)
1 (2.4%)
3 (7.1%)
1.00
0.64
-
0.061, 6.791
-
0.712
Civil Status
Single
Married
19 (45.2%)
19 (45.2%)
2 (4.8%)
2 (4.8%)
1.00
1.00
-
0.127, 7.850
-
1.000
ReligionRoman Catholic
Islam
Others (Protestant, none)
9 (21.4%)
22 (52.4%)
7 (16.7%)
1 (2.4%)
2 (4.8%)
1 (2.4%)
1.00
1.22
0.78
-
0.098, 15.230
0.041, 14.750
-
0.876
0.867
Ethnic Group
Zamboangueno
Bisaya
Tausug
Others
1 (2.4%)
0 (0.0%)
2 (4.8%)
1 (2.4%)
7 (16.7%)
6 (14.3%)
19 (45.2%)
6 (14.3%)
1.00
1.00
1.36
0.86
-
-
0.106, 17.417
0.044, 16.851
-
-
0.815
0.919
Specialization
Family Medicine
Internal Medicine
General Surgery
Obstetrics & Gynecology
4 (9.5%)
10 (23.8%)
14 (33.3%)
10 (23.8%)
0 (0.0%)
0 (0.0%)
3 (7.1%)
1 (2.4%)
1.00
1.00
0.47
1.00
-
-
0.042, 5.166
-
-
-
0.534
-
Year Level
1styear2
ndyear
3rd
year
4th
year
5th
year
17 (40.5%)11 (26.2%)
4 (9.5%)
5 (11.9%)
1 (2.4%)
1 (2.4%)3 (7.1%)
0 (0.0%)
0 (0.0%)
0 (0.0%)
1.000.09
1.00
1.00
1.00
-0.005, 1.830
-
-
-
-0.118
-
-
-
Had no clinical experience in
the care of dying patients 1 (2.4%) 0 (0.0%) 1.00 - -
Had no difficulties with
disclosure in the past 7 (16.7%) 3 (7.1%) 0.04 0.002, 0.704 0.028
Dont have difficulties in
disclosure anymore 15 (35.7%) 1(2.4%) 1.00 - -
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#&
For the physicians perceptions on the need for training in disclosure of poor
prognosis and death, simple logistic regression was done for each exposure variable.
These variables are shown in the full model (Table 6). Among the variables, having no
difficulties in disclosure in the past was shown to be statistically significant (p-
value=0.028). All variables having a p-value of
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#'
more likely to be in the senior year of their training, therefore, they perceive that the
patient would want to receive disclosure from a doctor and not from a family member. A
study done in Brazil showed that older and more experienced physicians are more likely
to be against openly discussing implications of poor prognosis (i.e. DNR status). As
physicians become older and gain more experience in handling patients, they are more
likely to do the disclosure themselves rather than having family members disclose poor
prognosis to terminally ill patients (Fumis et al, 2010).
Backward elimination of variables, left the variable, had no difficulties in disclosure
as the only statistically significant variable as seen in Table 7. Physicians who had no
difficulties in disclosure are 92% less likely to perceive that they needed training on
disclosure of poor prognosis and death. This may be attributed to the confidence that
these physicians have on their communication skills and probably personal experiences,
which makes it relatively easy for them to relate to patients, particularly those with poor
prognosis.
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#(
III. Perceptions of patients on death and disclosure of poor prognosis
Table 8. Perceptions of patients on death and disclosure of poor prognosis
*Reverse wording of questions
Perceptions amongResident Physicians
n=240
4
StronglyAgree
n(%)
3
Agree
n(%)
2
Disagree
n(%)
1
StronglyDisagree
n(%)
Theme A: General Concept and Concerns About Death and Dying
Death is a natural part
of life175(72.9%) 34 (14.2%) 14 (5.8%) 17 (7.1%)
Difficulty in
discussing death and
dying
49(20.4%)50 (20.8%)
60 (25%) 81 (33.8%)
Personal discomfort in
discussing death and
dying
47(19.6%) 43 (17.9%) 71 (29.6%) 79 (32.9%)
*Disclosure will
destroyhope
10 (4.2%)12 (5%) 35 (14.6%) 183(76.3%)
Theme B. Preferences of Patients on Physicians Disclosure Practices
*Prefer not to know
about poor prognosis60 (25%) 17 (7.1%) 36 (15%) 127(52.9%)
Prefer to have full
disclosure of poor
prognosis
158(65.8%) 31 (12.9%) 21 (8.8%) 30 (12.5%)
Important to know
prognosis early115(47.8%) 46 (19.2%) 46 (19.2%)
33 (13.8%)
Prefer disclosure from
a doctor
161(67.1%) 41 (17.1%) 7 (2.9%) 31 (12.9%)
Prefer disclosure from
a loved one30(12.5%) 48 (20%) 90 (37.5%) 72 (30%)
Theme C. Perceived Roles of the Physician in End-of-Life Care
Collaborative
decision-making with
patients
121(50.4%)62 (25.8%)
47 (19.6%) 10 (4.2%)
Doctors must provide
holistic care for their
patients
194(80.8%) 41 (17.1%)4 (1.7%)
1 (0.4%)
Doctors must be
trained on proper
disclosure of death andpoor prognosis
169(70.4%) 27 (11.3%) 16 (6.7%) 28 (11.7%)
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#)
The dependent variables or the responses of patients to the statements regarding the
general concept and concerns about death and dying are the following: perceptions on
death as a natural part of life, difficulty and personal discomfort in discussing death and
dying and maintaining hope in the face of poor prognosis. For the patients preferences
for disclosure, the statements are the following: patients prefer to know about their
prognosis, to have full disclosure, to receive disclosure at the earliest possible time and to
receive disclosure from an appropriate person whether from a physician or a loved one.
For the patients perceptions on the physicians roles in end-of-life care, the statements
are the following: doctors must collaborate with patients in decision-making, that
physicians must provide holistic care for patients and that there is a need for physicians
training for disclosure of poor prognosis. The independent variables or factors measured
are the sociodemographic variables, namely age, gender, civil status, religion, ethnic
group and illness severity.
A. General concept and concerns about death and dying
This study revealed that patients accept that death is a natural part of the cycle of
life with majority of the patients strongly agreeing (72.9%) to the statement. This means
that all patients are highly aware that death is a natural part of life, viewing death as the
only sure thing that would happen. This coincides with a study done by Stromberg and
Jaarsma in 2007, wherein majority of the patient respondents described death as a
natural part of life, that it is a certainty; what is uncertain was not knowing how and
when death would occur.
Majority of the respondents say that they do not have difficulty in discussing
topics of death and dying (33.8% strongly disagreed, 25% disagreed. This means that
respondents can talk about death and dying relatively easily, however these feelings may
not necessarily translate into actual discussions about ones own death given the
variability in the responses. Additionally, patients also generally disagreed when asked
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$*
whether patients are uncomfortable when talking about death and dying (32.9% strongly
disagreed, 29.6% disagreed). During the 2012 British Social Attitudes survey, wherein
researchers sought to assess the publics attitudes on the issue on discussing and planning
for end of life care, it was found out that 70% of the respondents say that they feel
comfortable talking about death, which relatively coincides with the findings of this study.
The belief that hope is destroyed in the face of poor prognosis is strongly opposed
by most of the patients (76.3% strongly disagreed, 14.6% disagreed). This means that in
the event the patient has poor prognosis, hope is still maintained by many of the
respondents. In 2009, Manalo, an educator and a consultant for Community and Family
Medicine, stated that it is important to foster faith and hope in communicating poor
prognosis. A lot of Filipinos cope with their illness by praying and many believe that
hoping that whatever God's will, it is best for that individual. Hope is a reaction, which
reflects a traditional Filipino belief in combination with a Western philosophy towards
illness. Despite how poor the prognosis and severity of illness, one remains optimistic for
a cure (Giger and Davidhizar, 2003).
B. Preferences of patients on physicians disclosure practices
This study revealed that majority of the patients disagreed when asked if they
prefer notto know about their poor prognosis (52.9% strongly disagreed, 15% disagreed).
This means that patients prefer to be informed of their prognosis rather than resorting to
nondisclosure. Numerous studies have also shown that patients generally want to be well-
informed about their diagnosis, prognosis, and treatment options. A large study in UK by
Jenkins et al found that 87% of 2331 patients wanted detailed information about their
condition, including bad news.
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$+
With regards to the amount of prognostic information that patients require,
patients agreed that they would want to have full disclosure of their prognosis (65.8%
strongly agreed). This is consistent with the study done by Marwit and Datson in 2002
wherein a large percentage of participants expressed full disclosure levels preference.
Disclosure done at the earliest possible time was perceived as important by majority of
the respondents (47.8% strongly agreed). This coincides with a study done in 2008 by
Apatira, et al in California, USA revealed that timely discussion of prognosis is essential
for emotional and logistical preparation in the possibility of the patients death.
In terms of the appropriate person to disclose the poor prognosis, patients
preferred to receive disclosure from a doctor (67.1% strongly agreed, 17.1% agreed).
Studies done in the USA by Kutner et al in 1999 and Greisinger, et al in 1997 found that
most patients wanted to discuss their prognosis truthfully with their doctor, including the
impact of the illness on their daily lives. Another more recent study done in 2003 by
Fried et al showed that majority of palliative care patients and their caregivers would like
to have discussed life expectancy with their clinician. However, in some countries and
other cultural groups, the primary recipient of bad news is the family. For instance, a
study done by Uchitomi and Yamawaki pointed out that in Japan, all family members
are informed by physicians diagnosis, condition and therapeutic programs, before the
cancer patient is told the truth. Additionally, some patients would want disclosure to
come from a trusted family member who is more aware of the patients emotional,
psychological, social and physical conditions and could soften the impact and provide
comfort (Flores, 2011). Moreover, numerous studies have found that in instances wherein
family-oriented disclosure and decision-making dominates, many patients recognize the
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$"
propriety of nondisclosure and yet, they personally want to be involved in what is
going on and to decide for themselves (Hallenbeck & Arnold, 2007). This study revealed,
however, that most of the respondents do not prefer to receive disclosure from their loved
ones or families (30% strongly disagreed, 37.5% disagreed).
C. Perceived roles of the physician in end-of-life care
With regards to end-of-life care, most of the patients perceive that both patients
and doctors must share in the responsibility as decision-makers (50.4% strongly agreed,
25.8% agreed). This can be interpreted that patients prefer to have an active, rather than a
passive role, in medical decision-making. According to a literature review conducted by
the Australian National Breast and Ovarian Cancer Centre in 2012, when discussing
prognosis, it is imperative that the physician has a collaborative relationship with the
patient particularly in making decisions for end-of-life care. Moreover, a collaborative
relationship between the physician and the patient showed that it instills hope for the
patient rather than an avoidant approach is utilized in discussing prognosis and end-of-
life care (Haggerty, et al, 2003).
The holistic concept of medicine means that health should encompass the entirety
of the person, such as considering the psychological, physical, social and spiritual needs
of the patient (Strandberg, et al, 2007). The primary care physicians remain to be at the
forefront in leading the medical team in providing holistic care for the patient,
particularly those who have poor prognosis. Using the holistic approach can help patient
relieve of their suffering and maintain hope (Ngo-Metzger and August, 2008). According
to majority of the patient respondents, doctors must be able to provide holistic care for
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$#
their patients (80.8% strongly agreed, 17.1% agreed). This means that not only should
physicians cure the physical aspects of the illness, but must also integrate the whole being
of the patient. Moreover, patients perceive that given the challenging position faced by
physicians in dealing with dying patients, they feel that physicians should be better
equipped to handle such situations (Ngo-Metzger and August, 2008). As such, majority
of the patient respondents perceive that it is necessary for the physicians to be trained on
proper disclosure of death and poor prognosis (70.4% strongly agreed).
IV. Association of socio-demographic factors and severity of illness to
patients perceptions
A.Factors associated with patients general concept and concerns
about death and dying
Using simple logistic regression between the patients perceptions that death is a
natural part of life and the socio-demographic factors, namely age, sex, civil status,
religion, ethnic group, educational attainment as well as the severity of illness, did not
yield any significant associations.
For the patients perceived difficulty in discussing death and dying, univariate
analysis was done for each exposure variable and included in the full model of variables
as seen on Table 9. Among the variables, Islam was shown to be statistically significant
(p=0.022). No other variables were statistically significant, however, all qualified
variables (p-value
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$$
Table 9. Full model of variables associated with patients perceptions on difficulty in
discussing death and dying
* OR odds ratio; CI confidence interval
For patients who perceived personal discomfort in discussing death and dying,
the full model of variables can be seen in Table 10. No significant variables were found
to be statistically significant. Age group, religion, ethnic group, educational attainment
and severity of illness were included in the reduced model for multiple logistic regression
as can be seen on table 10.1 (see appendix).
Variables
Have difficulty in discussing
death and dying OR 95% CI p-valueAgree
n(%)
Disagree
n(%)
Age Group
!35 years old
36-54 years old
51-64 years old
"65 years old
35 (14.6%)
24 (10.0%)
25 (10.4%)
15 (6.3%)
40 (16.7%)
45 (18.8%)
31 (12.9%)
25 (10.4%)
1.00
0.61
0.92
0.69
-
0.311, 1.193
0.460, 1.847
0.313, 1.503
-
0.149
0.818
0.346
Gender
Male
Female
38 (15.8%)
61 (25.4%)
57 (23.8%)
84 (35.0%)
1.00
0.32
-
0.643, 1.844
-
0.750
Civil Status
Single
Married or CohabitingWidow/Widower or Separated
26 (10.8%)
61 (25.4%)12 (5.0%)
38 (15.8%)
83 (34.6%)20 (8.3%)
1.00
1.070.88
-
0.590, 1.9540.367, 2.098
-
0.8150.768
Religion
Roman Catholic
Islam
Others (Protestant, none)
56 (23.3%)
36 (15.0%)
7 (2.9%)
98 (40.8%)
32 (13.3%)
11 (4.6%)
1.00
1.97
1.11
-
1.104, 3.510
0.408, 3.036
-
0.022
0.833
Ethnic Group
Zamboangueno
Bisaya
Tausug
Others
35 (14.6%)
26 (10.8%)
28 (11.7%)
10 (4.2%)
61 (25.4%)
41 (17.1%)
26 (10.8%)
13 (5.4%)
1.00
1.10
1.88
1.34
-
0.580, 2.104
0.954, 3.692
0.533, 3.375
-
0.761
0.068
0.534
Educational Attainment
Without Higher Education
With Higher Education75 (31.3%)24 (10.0%)
99 (41.3%)42 (17.5%)
1.000.75
-0.420, 1.353
-0.344
Illness Severity
Mild Illness
Moderate Illness
Severe Illness
36 (15.0%)
47 (19.6%)
16 (6.7%)
49 (20.4%)
73 (30.4%)
19 (7.9%)
-
0.88
1.15
-
0.498, 1.542
0.519, 2.531
-
0.647
0.736
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$%
Table 10. Full model of variables associated with patients perceptions on personal
discomfort in discussing death and dying
* OR odds ratio; CI confidence interval
For patients perception that hope is maintained even in the face of poor prognosis,
the full model of variables is shown on table 11. Among the variables, the ethnic group
Bisaya is shown to be statistically significant (p-value = 0.043). Age group, gender,
ethnic group and illness severity were variables included in the reduced model for
multiple logistic regression which can be seen in table 11.1, appendix.
Variables
Do not have personal discomfort
in discussing death and dying OR 95% CI p-valueAgree
n(%)
Disagree
n(%)
Age Group
!35 years old
36-54 years old
51-64 years old
"65 years old
24 (10.0%)
23 (9.6%)
26 (10.8%)
17 (7.0%)
51 (21.3%)
46 (19.2%)
30 (12.5%)
23 (9.6%)
1.00
1.06
1.84
1.57
-
0.529, 2.133
0.901, 3.765
0.711, 3.470
-
0.865
0.094
0.264
Gender
Male
Female
36 (15.0%)
54 (22.5%)
59 (24.6%)
61 (25.4%)
1.00
0.97
-
0.570, 1.659
-
0.919
Civil Status
Single
Married or Cohabiting
Widow/Widower or Separated
22 (9.2%)
55 (22.9%)
13 (5.4%)
42 (17.5%)
89 (37.0%)
19 (7.9%)
1.00
1.18
1.31
-
0.637, 2.184
0.545, 3.130
-
0.599
0.549
ReligionRoman Catholic
Islam
Others (Protestant, none)
51 (21.3%)
31 (12.9%)8 (3.3%)
103 (42.9%)
37 (15.4%)10 (4.2%)
1.00
1.691.62
-
0.944, 3.0320.601, 4.341
-
0.0770.341
Ethnic Group
Zamboangueno
Bisaya
Tausug
Others
31(12.9%)
26 (10.8%)
25 (10.4%)
8 (3.3%)
65 (27.0%)
41 (17.1%)
29 (12.1%)
15 (6.3%)
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