factors associated with the perceptions of physicians and patients regarding disclosure of death and...

7/26/2019 Factors Associated With the Perceptions of Physicians and Patients Regarding Disclosure of Death and Poor Progno

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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


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


preference to be informed of poor prognosis

74


have full disclosure of prognosis

47


preference to have full disclosure of poor prognosis

75


have disclosure of poor prognosis at the earliest possible time

48


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


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


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


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


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


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%)


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


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


dying

49(20.4%)50 (20.8%)

60 (25%) 81 (33.8%)

Personal discomfort in


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%)


a doctor

161(67.1%) 41 (17.1%) 7 (2.9%) 31 (12.9%)


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


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


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


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


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%)

factors associated with the perceptions of physicians and patients regarding disclosure of death and...

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