Abstract
Objectives
Disclosure of bad news is distressing for patients and family members. Our aim was to assess patients' perceptions and preferences regarding bad news in the health setting.
Methods
Cross-sectional, multi-centered study supported by an external grant in 15 Government and Private Hospitals across Pakistan. A sample size of 1673 patients and family members was used. Ethics permission/consent was taken from each participating hospital and participant. Responses were compared across provinces, gender, age, education and income.
Results
>80% patients preferred their relatives to know the diagnosis first and they wanted the news to be disclosed to them by doctors. Significant association between education level, income and preference for wanting to know the diagnosis was found. Reasons for wanting to know the diagnosis included treatment, prognosis and prevention options whereas reasons for not wanting to know included fear of emotions and God's will.
Conclusion
The majority of Pakistani patients want to be informed and want the family to know first. Preferences for disclosure vary across, age, education and income level.
Innovation
First countrywide study on this topic. Identifies need for culturally sensitive guidelines that include the family's role in disclosure of bad news.
Keywords: Bad news, Patients, Perceptions, Preferences, Physicians, Family
Highlights
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This is the first country wide cross-sectional study regarding disclosure of bad news
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The majority of Pakistani patients want their relative/s to know first
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The majority of Pakistani patients want to know the diagnosis of bad news and want to receive it from doctors
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Perceptions about chronic and life-threatening diseases like cancer being ‘bad news’ vary across age and income status
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Reasons for wanting to know the diagnosis include options for treatment and reasons for not wanting to know include submission to God's will.
1. Introduction
‘Bad news’ is defined as ‘any news that negatively and drastically alters the future [1]. Commonly perceived examples of ‘bad news' include the diagnosis of cancer, impending blindness, amputation of a limb/s, stroke, fetal demise and the diagnosis of diabetes mellitus or the need for surgery, to name a few [2,3]. Perceptions of bad news vary in different parts of the world and in different cultures [4]. The disclosure of bad news is one of the most challenging tasks for a physician as it is ideally disclosed according to the cultural context and expectations of the patient and even the relatives [[4], [5], [6]]. Disclosure of truth in the context of delivering bad news to patients is perceived differently in different cultures and communities [6]. Individual autonomy enabling the right to choose to know or decline to know the truth is acceptable in the West, and is mandated by regulations and legislation. On principle, the family is not included in this process of disclosure in these Western societies [7,8]. In other parts of the world, the notion of collective autonomy applies often and consequently the patient will often defer to the family or the eldest in the family. Family member/s will often hide the truth in the context of bad news due to collective family wishes and the priority of avoiding perceived damage to patient health in many cultures [[7], [8], [9], [10]]. Disregard for the cultural context and family during disclosure can make the experience of receiving the bad news even worse and can negatively impact the future experience of the patient and family with medical care. Literature abounds with reports of patients' and families' experiences of receiving bad news [[1], [2], [3],11].
Although there are many international guidelines, they are not always generalizable and applicable to different contexts and cultures in which bad news is delivered [[11], [12], [13], [14], [15]]. In many countries, the difficulties are compounded due to a lack of adequate training for this emotive task [8,16,17]. It is because of these reasons that approximately half of the recipients of bad news are not satisfied with the way it is disclosed to them [8,11,14].
A recent study done on patients presenting to the Community Health Centre of Aga Khan University Hospital, Karachi, has shown that the majority of patients wanted to know what was happening to them [18] This is true worldwide as shown in multiple international studies [15,19,20].
There is a dearth of literature on the topic of bad news in the context of the patient physician interaction in Pakistan. Therefore, the objectives of this study were to elicit the perceptions of patients and/or their family members regarding bad news and assess the effects of age, gender, level of education and income on these perceptions. Another objective was to assess the preferences of patients and families regarding communication of bad news by health care professionals in the hospital setting and to explore the reasons for wanting or not wanting the bad news to be disclosed to them. As there is wide ethnic and cultural diversity among patients due to the socio-demographic profile of the country, another aim was to see if there were any differences in patients presenting to public and private and teaching and non-teaching hospitals across the four provinces of Pakistan.
2. Materials and methods
2.1. Design/setting
This was a cross sectional study conducted over a period of one year, from January 2016 to June 2017 in fifteen hospitals/ medical institutes across all the four provinces of Pakistan. Eight of them were private and seven belonged to the government sector. In each province, an approximately equal number of teaching and non-teaching hospitals was selected for data collection. The hospitals/medical centers that participated included Aga Khan HospitalKarachi, Indus Hospital and Liaquat University of Health Sciences from Sindh, Sheikh Zaiyad University, Social Security Hospital, Shifa International Hospital and Ammar Hospital from Punjab, Khyber Medical College, Maulvi Ameer Shah Memorial Hospital, Rehman Medical Institute, Khyber Medical Center and Dabgari Garden Medical Center from Khyber Pakhtunkhwa, Bolan Medical College, Sajid Hospital, Akram Hospital and Christian Missionary Hospital from Baluchistan.
2.2. Ethical approval and permissions
Ethical approval and permission was taken from the Aga Khan University Ethics Committee ERC no. 2345-FM-ER-12 and the Dean, Medical Superintendent or Ethics Committees of the remaining hospitals facilitated by the Pakistan Health Research Council PHRC (Formerly Pakistan Medical Research Council PMRC).
2.3. Sample size and selection of participants from each study site
All patients and attendants aged 18 and above present in the identified institutes were recruited by non-probability convenience sampling till the final sample size was reached. The questionnaire was piloted on 5% of the estimated sample size. It was also translated into Urdu and back into English for validation.
Since this project was conducted in all the provinces of Pakistan in fifteen different hospitals with different number of patients visiting each hospital, the sample size was adjusted according to the average number of patients presenting to the sampled hospitals. We recruited 60% of the sample size from Sindh (519 patients) and Punjab (483 patients), while 25% of the sample size was recruited from Khyber Pakhtunkhuwa (421 patients) and 15% from Baluchistan (250 patients) making a total of 1673 patients.
2.4. Data collection
Trained data collection officers visited the Medicine, Surgery and allied outpatient clinics of the identified study sites during clinic hours and approached the patients and/or family members present in the waiting areas. A pre-coded semi-structured questionnaire consisting of dichotomous and qualitative questions covering demographic details and perceptions was administered to patients and attendants fulfilling the inclusion criteria. All completed questionnaires were mailed to the principal investigator, following which trained research assistants entered the data in SPSS.
2.5. Data analysis
The analysis was performed on SPSS version 22. Baseline information on demographics was analyzed using descriptive statistics. For continuous variables such as age, means and standard deviation was reported. Frequencies of all questions related to perceptions of patients and/or family members regarding doctors' practice of breaking bad news were calculated. Comparison was done across provinces for age, gender, education level and income to see the distribution in responses across various study sites.
Participants were also asked open ended questions regarding reasons for wanting and not wanting bad news disclosed to them. The responses were grouped into themes for each province according to the main content of the answer.
3. Results
In this survey, 1673 patients and/or their family members were interviewed. Their mean age was 36.6 years. There were 988 (60%) females and 670 (40%) males. The majority were married (69%). Almost 75% had received some form of education with 27% having completed their graduate/postgraduate studies.
Table 1 shows the characteristics of the surveyed sample.
Table 1.
Demographic characteristics of surveyed patients (n = 1673).
| Characteristics | n (%) |
|---|---|
| Age | |
| >/= 18 to </=35 | 852 (51) |
| >35 to </= 55 | 573 (34.3) |
| >55 | 175 (10.5) |
| Missing/Don't know | 71 (4.2) |
| Mean Age | 36.60 |
| Gender | |
| Male | 670 (40.1) |
| Female | 988 (59.9) |
| Marital Status | |
| Unmarried | 457 (27.3) |
| Married | 1146 (68.6) |
| Widowed | 27 (1.6) |
| Divorced | 7 (0.4) |
| Missing/Don't know | 34 (2.0) |
| Educational Status | |
| No formal education | 321 (19.2) |
| Primary/Elementary school | 583 (34.9) |
| High school | 230 (13.8) |
| Graduate/postgraduate | 450 (26.9) |
| Missing/Don't know | 87 (5.2) |
| Occupational Status | |
| Not working/Retired | 696 (41.7) |
| Provisional Occupation | 255 (15.3) |
| Corporate/Non corporate jobs | 25 (1.5) |
| Skilled worker | 266 (15.9) |
| Business | 78 (4.7) |
| Missing | 351 (21.0) |
| Monthly/House Hold Income | |
| </=Rs. 5000 | 97 (5.8) |
| Rs. >5000 to </=20,000 | 673 (40.3) |
| Rs. >20,000 to </= 80,000 | 643 (38.5) |
| >Rs. 80,000 | 106 (6.3) |
| Missing | 152 (9.1) |
Participants were given a list of 6 broad categories of bad news with examples in each of them according to the literature search and were asked to mark “yes” if they considered them as bad news and “no” if they did not consider them to be bad news. Diagnosis of death or disability (examples blindness, deafness, amputation of limb) was reported by most as bad news (97%). This was followed by a diagnosis of a chronic disease (95%) which included diabetes mellitus, hypertension, coronary artery disease, stroke, asthma and vitiligo.
Genetic diseases were perceived as bad news by (93%), Cancer by (92%), and chronic infectious diseases that included Hepatitis B, C, HIV and TB, as bad news by 89 %. Acute infectious diseases like typhoid, malaria, hepatitis A and E were perceived as bad news by the least number of respondents at (77%).
Table 2 details the information regarding these perceptions about diseases considered bad news.
Table 2.
Patients' responses across pakistan regarding perceptions about diseases and conditions considered bad news.
| Questions n (%) | |
|---|---|
| Is having a chronic disease bad news? (e.g. Diabetes Mellitus, Hypertension, Coronary artery disease stroke, asthma and Vitiligo) | |
| Yes | 1590 (95.2) |
| No | 44 (2.6) |
| Don't know/Missing | 37 (2.2) |
| Is having a genetic disease bad news? | |
| Yes | 1557 (93.2) |
| No | 75 (4.5) |
| Don't know/Missing | 39 (2.3) |
| Is death/disability bad news? (e.g. blindness, deafness, amputation of limb) | |
| Yes | 1615 (96.6) |
| No | 35 (2.1) |
| Don't know/Missing | 21 (1.3) |
| Is having acute infectious disease bad news? (e.g. Typhoid, Malaria, Hepatitis A and E) | |
| Yes | 1286 (77.0) |
| No | 279 (16.7) |
| Don't know/Missing | 106 (6.3) |
| Is having chronic infectious disease bad news? (e.g. Hepatitis B,C, HIV, TB) | |
| Yes | 1494 (89.4) |
| No | 93 (5.6) |
| Don't know/Missing | 84 (5.0) |
| Is news of cancer bad news? | |
| Yes | 1540 (92.1) |
| No | 93 (5.6) |
| Don't know/Missing | 38 (2.3) |
Regarding aspects of receiving bad news, 83.5% of people across Pakistan reported that they would want to know if they were found to be suffering from a serious condition. Only 10% of people reported they would not want to know. Table 3. Most participants (78%) preferred doctors to give the bad news rather than relatives (13.6%) or nurses (5.4%) respectively. The majority of the respondents (68%) believed that family members of the patients should be the first to know the bad news, while only (25%) believed that patients should be given the bad news first. Table 3 shows the detailed responses of patients regarding different aspects of receiving bad news across Pakistan.
Table 3.
Comparison of patients' responses regarding aspects of receiving bad news across provinces, gender, age, education and income.
| Variable | Responses | n(%) | P value |
|---|---|---|---|
| If you were diagnosed with serious disease, would you want to know? | |||
| All Over | Yes | 1396 (83.5) | NA |
| Pakistan | No | 173 (10.4) | |
| Don't know/Missing | 102 (6.1) | ||
| By Province | |||
| Sindh | Yes | 464 (89) | <0.001 |
| No | 56 (10.7) | ||
| Punjab | Yes | 405 (84) | |
| No | 62 (13) | ||
| Balochistan | Yes | 206 (82.4) | |
| No | 43 (17) | ||
| KPK | Yes | 320 (76) | |
| No | 42 (10) | ||
| By Gender | Males | 667 (40) | 0.103 |
| Yes | 572 (84.4) | ||
| No | 95 (14) | ||
| Females | 973 (58) | ||
| Yes | 806 (83) | ||
| No | 167 (17) | ||
| By Age | >18 to <35 | 0.274 | |
| Yes | 694 (81.4) | ||
| No | 95 (11) | ||
| >35 to <55 | |||
| Yes | 498 (87) | ||
| No | 51 (9) | ||
| >55 | |||
| Yes | 167 (95.4) | ||
| No | 22 (12.5) | ||
| By Education Level | No formal education | 0 | |
| Yes | |||
| No | 230 (71.6) | ||
| Primary school | 64 (20) | ||
| Yes | |||
| No | 503 (86) | ||
| High school | 54 (9) | ||
| Yes | |||
| No | 190 (82.6) | ||
| Graduate/ | 23 (10) | ||
| Postgraduate | |||
| Yes | |||
| No | 407 (90.4) | ||
| 24 (5.3) | |||
| By Income in Rs. | <5000 | ||
| 0.001 | |||
| Yes | 72 (74) | ||
| No | 20 (20.6) | ||
| >5000 to <20,000 | |||
| Yes | 560 (83) | ||
| No | 75 (11) | ||
| >20,000 ≤ 80,000 | |||
| Yes | 557 (86.6) | ||
| No | 49 (7.6) | ||
| >80,000 | |||
| Yes | 90 (85) | ||
| No | 8 (7.5) | ||
| Who should give bad news to the patient? | |||
| All Over | Doctor | 1302 (78) | NA |
| Pakistan | Nurse | 90 (5.4) | |
| Family member | 227 (13.6) | ||
| Other | 22 (1.3) | ||
| Don't know/Missing | 30 (2) | ||
| By Province | |||
| Sindh (n = 502) | Doctor | 393 (75.7) | 0.002 |
| Nurse | 31 (6) | ||
| Family member | 78 (15) | ||
| Punjab (n = 449) | Doctor | 369 (76.3) | |
| Nurse | 21(4.3) | ||
| Family member | 59 (12) | ||
| KPK (n = 423) | Doctor | 341 (81) | |
| Nurse | 35 (8.3) | ||
| Family member | 47 (11) | ||
| Balochistan (n = 244) | Doctor | 198 (79) | |
| Nurse | 3 (1) | ||
| Family member | 43 (17) | ||
| By Gender | Male | 0.082 | |
| Doctor | 511(76.6) | ||
| Nurse | 38(5.6) | ||
| Family member | 98(14.6) | ||
| Female | |||
| Doctor | 786(80.7) | ||
| Nurse | 51(5) | ||
| Family member | 126(13) | ||
| By Age | >/= 18 to </=35 | 0.211 | |
| Doctor | 649(76) | ||
| Nurse | 48(5.6) | ||
| Family member | 125(14.6) | ||
| >35 to </= 55 | |||
| Doctor | 453(79) | ||
| Nurse | 37(6.4) | ||
| Family member | 70(12) | ||
| >55 | |||
| Doctor | |||
| Nurse | 165(94) | ||
| Family member | 5(3) | ||
| 25(14) | |||
| By Education Level | No formal education | 0.636 | |
| Doctor | |||
| Nurse | 245(76.3) | ||
| Family member | 22(7) | ||
| Primary school | 43(13.3) | ||
| Doctor | |||
| Nurse | 463(79.4) | ||
| Family member | 28(5) | ||
| High school | 73(12.5) | ||
| Doctor | |||
| Nurse | 182(79) | ||
| Family member | 15(6.5) | ||
| Graduate/ | 27(11.7) | ||
| Postgraduate | |||
| Doctor | |||
| Nurse | 345(76.6) | ||
| Family member | 22(5) | ||
| 69(15.3) | |||
| By Income in Rs. | </= 5000 | 0.781 | |
| Doctor | 74(76) | ||
| Nurse | 5(5) | ||
| Family member | 14(14.4) | ||
| >5000- ≤ 20,000 | |||
| Doctor | 513(76) | ||
| Nurse | 39(5.7) | ||
| Family member | 97(14.4) | ||
| >20,000-</=80,000 | |||
| Doctor | 517(80.4) | ||
| Nurse | 34(5) | ||
| Family member | 75(11.6) | ||
| >80,000 | |||
| Doctor | 85(8) | ||
| Nurse | 5(4.7) | ||
| Family member | 12(11.3) | ||
| Who should receive the bad news first? | |||
| Across | Patient | 413(24.7) | NA |
| Pakistan | Family member | 1132(67.7) | |
| Other | 87(5) | ||
| By Province | |||
| Sindh | Patient | 124(24) | 0.006 |
| Family member | 350(67.4) | ||
| Others | 33(6.3) | ||
| Punjab | Patient | 92(19) | |
| Family member | 341(70.6) | ||
| Others | 45(9.3) | ||
| KPK | Patient | 124(29.4) | |
| Family member | 274(65) | ||
| Others | 70(16.6) | ||
| Balochistan | Patient | 73(29) | |
| Family member | 166(66.4) | ||
| Others | 45(18) | ||
| By Gender | Male | 0.08 | |
| Patient | 169(25.3) | ||
| Family member | 443(66.4) | ||
| Others | 44(6.5) | ||
| Female | |||
| Patient | 240(24.6) | ||
| Family member | 685(70.4) | ||
| Others | 41(4) | ||
| By Age | >/= 18 to </=35 | 0.09 | |
| Patient | 201(23.5) | ||
| Family member | 588(69) | ||
| Others | 45(5) | ||
| >35 to <55 | |||
| Patient | 152(26.5) | ||
| Family member | 378(66) | ||
| Others | 30(5) | ||
| >55 | |||
| Patient | 54(31) | ||
| Family member | 134(76.5) | ||
| Others | 6(3.4) | ||
| By Education Level | No formal education | 0.876 | |
| Patient | |||
| Family member | 76(23.6) | ||
| Others | 220(68.5) | ||
| Primary school | 16(5) | ||
| Patient | |||
| Family member | 154(26.4) | ||
| Others | 381(65.3) | ||
| High school | 34(6) | ||
| Patient | |||
| Family member | 57(24.7) | ||
| Others | 145(63) | ||
| Graduate/ | 12(5) | ||
| Postgraduate | |||
| Patient | |||
| Family member | |||
| Others | 109(24) | ||
| 312(69.3) | |||
| 19(4) | |||
| By Income in Rs. | </= 5000 | 0.796 | |
| Patient | 19(19.5) | ||
| Family member | 72(74) | ||
| Others | 4(4) | ||
| >5000- ≤ 20,000 | |||
| Patient | 173(25.7) | ||
| Family member | 447(66.4) | ||
| Others | 34(5) | ||
| >20,000-<80,000 | |||
| Patient | |||
| Family member | |||
| Others | 161(25) | ||
| >80,000 | 434(67.4) | ||
| Patient | 35(5.4) | ||
| Family member | |||
| Others | |||
| 28(26.4) | |||
| 67(63) | |||
| 8(7.5) | |||
On comparing provincial responses, a highly significant difference of 0.001 p value was found, as 89% in Sindh, 84% in Punjab, 82.4% in Baluchistan and 76% participants in KPK wanted to know the diagnosis of serious disease. Almost equal numbers of males (86%) and females (83%) wanted to know the diagnosis without significant difference (p value 0.103). A highly significant difference (p value 0.000) was found when responses about wanting to know was compared across education status so that 71.6% participants with no formal education, and 90.4% with graduate and post graduate education wanted to know the diagnosis of serious disease. Correlation between income status and responses was also highly significant (p value 0.001) as 74% participants in income category of less than or equal to Rs. 5000 wanted to know the diagnosis and 85% above 80,000 income range wanted to know. Similarly, almost equal numbers of males and females wanted the news to be broken to them by a doctor at (76.6) and (80.7.%) respectively. In response to the question, ‘Who do you think should give bad news to patients?’ again there was a highly significant difference, (p value 0.002) found across provinces as 75.6% patients in Sindh, 76.3% in Punjab, 81% in KPK and 79.% participants in Balochistan wanted the news to be broken by a doctor to them.(Table 3).
Further exploration was done through open ended question as delineated in Table 4.
Table 4.
Patients' reasons for wanting or not wanting to know the diagnosis of a serious illness.
| THEME |
SINDH Total = 499/519(96%) RESPONSES YES = 437 NO = 62 |
PUNJAB Total = 467/483(97%) RESPONSES YES = 409 NO = 29 |
BALUCHISTAN Total = 239/250(96%) RESPONSES YES = 210 NO = 29 |
KPK Total = 196/421(46.5%) RESPONSES YES = 165 NO = 31 |
|---|---|---|---|---|
| Examples | Examples | Examples | Examples | |
| RESPONSES “If you were diagnosed with a serious illness, why would you want to know?” | ||||
|
THEME Treatment |
n = 247 To get correct /timely /complete/proper treatment. To catch it early. To treat it so that it does not spread. To prevent it from spreading. To go to a good Doctor. Why did it happen to me? To find out about the disease. |
n = 212 To get correct timely complete/proper treatment. To catch it. To treat it so that it does not spread. To prevent it from spreading. |
n = 39 To get correct/timely complete/proper treatment. To catch it early To treat it so that it does not spread. For self care For peace of mind To enjoy the remaining life |
n = 130 To get correct /timely /complete/proper treatment. To catch it early. To treat it so that it does not spread. To prevent it from spreading. To go to a good Doctor. So that I can cure the disease. |
|
THEME Right to know |
n = 21 | n = 00 | n = 13 | n = 00 |
|
THEME Prevention |
n = 16 For prevention. To prevent it from spreading. Preventive measures. |
n = 22 For prevention. To prevent it from spreading. Preventive measures. |
n = 133 For prevention. To prevent it from spreading. Preventive measures. |
n = 8 For prevention. To prevent it from spreading. Preventive measures. |
|
THEME For information |
n = 114 To know the severity of the disease and remaining time left. To get advice. To get more information about the disease. |
n = 97 For information. To face the disease. One should have information. To get advice. To get more information about the disease. |
n = 11 To face the disease. One should have information. To be prepared. To know the severity. To estimate how much time one has left to live. |
n = 18 For information. To face the disease. One should have information. To get advice and be prepared. To estimate how much time one has left to live. One should know. |
|
THEME Future |
n = 29 |
n = 44 It is my future. To face the future. For peace of mind. To enjoy the rest of my life. For self care. To prevent future problems |
n = 5 It is my future. To face the future. For eace of mind. To enjoy my remaining life. To prevent future problems |
n = 9 It is my future. To face the future. For peace of mind. To enjoy the rest of my life. For self care. To prevent future problems. |
|
THEME Family Children |
n = 4 |
n = 02 For my children. For my family due to obligation to others |
n = 6 For my children For my family due to obligation to others |
|
|
THEME Others |
n = 06 |
n = 03 Sadness is forbidden |
n = 3 Sadness is forbidden To fight To save myself |
|
| RESPONSES “If you were diagnosed with a serious illness, why would you not want to know?” | ||||
| Emotional reaction | n = 08 |
n = 19 Emotions. Tension. Depression. Worry. It is stressful. One lose motivation to live. |
n = 7 Emotions. Tension. Depression. Worry. It is stressful. Motivation to live is lost. I am very serious |
|
| Submission to God's will |
n = 48 God's will In God's hands |
n = 02 Upto the doctor to tell |
n = 3 In God's hands. May God save us. God forbid |
n = 04 In God's hands May God save us/God forbid. Upto the doctor to tell |
| Fear of finding out |
n = 06 Too young to die/too old to know No need Do not want to know Do not want to die before death. Want to spend my remaining life happily. Afraid to know. |
n = 08 Should not know. Want to spend my remaining life happily. Do not want to die before death It is stressful One loses motivation to live Cannot handle this. Afraid to know. |
n = 23 Fear/Phobia. Should not know. Want to spend my remaining life happily. Too young to die. Too old to know. No need to know. Do not want to know. It is stressful. One loses ones motivation to live. Too difficult to hear such news. Afraid to know. |
n = 17 Fear/Phobia. Should not know. Do not want to die before death Too young to die. Too old to know. No need to know Do not want to know. It is stressful. One loses ones motivation to live Cannot handle such news. Afraid to know. |
| Difficulty in understanding No medical knowledge |
n = 00 | n = 00 |
n = 01 No medical knowledge |
|
| Financial issue | n = 00 | n = 00 | n = 01 | n = 01 |
| Medically unfit | n = 00 | n = 00 |
n = 02 Cardiac disease |
n = 01 Cardiac disease |
Out of the 519 people who participated from Sindh, 499 (96%) responded to the questions exploring reasons for wanting to know the bad news. Out of the 499 participants, 437(96%) said they would want to know about the disease. The most prevalent reason for wanting to know was early diagnosis and treatment of the disease (247/437) (56%).
Out of the 483 people who participated from Punjab, 467 (97%) responded to the questions exploring reasons for wanting to know the bad news. Out of the 467 participants, 409(87.5%) said they would want to know about the disease.
In Balochistan, out of 250, 239 (96%) people responded to these questions. Two hundred and ten (88%) said they would want to know about the disease. Unlike in Sindh and Punjab, the main reason for wanting to know was to be able to take preventive measures (133/210) (63%) followed by ‘for treatment purposes’ (39/210) (18.5%).
Out of 421 people from Khyber Pakhtunkhwa, 196 participants responded. One hundred and sixty five (84%) said they would want to know. The main reasons for wanting to know included early recognition and treatment (130/165) (78.7%).
Table 4 summarizes this thematic analysis across the provinces in Pakistan.
4. Discussion and conclusion
4.1. Discussion
This is the first multi-centre study done across all the provinces of Pakistan describing the local perspective of patients' and their family members perceptions regarding bad news and its communication in the hospital setting. The bulk of the participants were between 18 and 55 years of age which ensured a widely representative age range in congruence with the age demographics of the country.
The number of females was greater, which can be explained by the fact that women and mothers present in much bigger numbers than men to Obstetrics and Gynecology and Pediatrics settings.
Patients and family members were asked about their perceptions of a range of diagnoses commonly given by doctors to patients and/or attendants and that are considered ‘bad news’ because they are either life threatening or impact the affected individual and the family negatively for life. These diagnoses fall in the purview of the established definition of bad news [1]. Across Pakistan, diseases and conditions which are perceived as incurable and permanent like cancer (92%), death or disability like blindness, deafness and amputation of a limb (97%), and chronic diseases like diabetes mellitus, hypertension, coronary artery disease, stroke (95%), were perceived as bad news by the majority of the respondents whereas acute infectious diseases like typhoid, malaria, hepatitis A and E were perceived by fewer patients (77%) as bad news. This is understandable as these conditions get cured in the majority of affected individuals and their treatment is widely available. However, perceptions about these diseases may be very different in parts of the world where these conditions are rare and unfamiliar. No studies about these diseases being perceived as ‘bad news’ were found. However, a small study in a specific community found that the majority of community dwellers perceived DM as a burden and some feared it and considered it worse than cancer [21].
Regarding disclosure of bad news, the large majority of respondents across Pakistan (83%) preferred to know the diagnosis regardless of how bad it was. This finding is supported by two small studies in two cities in Pakistan, in the oncology ward of a medical complex and the other in a single department of a private hospital in Karachi, and many more in the international literature [18,20,22]. The wish to know correlated with increasing level of education, as has been seen in cancer patients in Malta and several other countries [23]. In a study from Jordan, 86.8% participants wanted to be informed of the diagnosis if they developed cancer [24].
The majority (78%) of the participants preferred doctors to give the bad news [19,24]. A remarkable finding was that the majority of respondents, nearly 70%, wanted the news to be broken to the relative first, compared to only 25%, who wanted to hear it themselves first [2,4]. This preference appears to be a reflection of the Pakistani cultural context, where many times not just the immediate and extended family but friends and others are present and involved in times of illness/disease and in interactions with medical professionals. These differences in preferences have been acknowledged in multi-cultural societies like the UK [4]. It also highlights the family as an autonomous unit rather than the affected individual, where often, the affected individual wants the bad news to be broken to the family first, and is in congruence with the strong family system prevailing in Pakistan and has been noted in earlier studies on Asian populations, including Japan [14,[25], [26], [27]]. In Japan, physicians explain the life threatening condition to the family first and then disclose the diagnosis or prognosis to the patient only after the family agrees, as that is the cultural practice [27]. Similar practices are prevalent in Iran due to the patient and family functioning as an autonomous unit in times of illness and vulnerability [6]. A Saudi cancer patients's study also showed a preference for bringing a family member or a friend into the BBN discussion, especially in patients diagnosed with breast cancer compared to other types of cancers. This may be attributed to the sensitivity of the cancer type, especially among women, which emphasizes the importance of patients' support systems [28].
However, it is in contrast with the results in a neighboring country where the large majority wanted the bad news to be broken to them first [24]. It is also in conflict with the ethics values prevalent in Western societies where individual autonomy is paramount [29]. Awareness and attention to these variations prevalent across cultures is important to improve the experience of receiving bad news and avoid dissatisfaction. It is interesting to note that, in acknowledgement of this cultural variation, a communication model has been developed. Also, efforts are being made to increase cultural and ethnic diversity in medical school curricula [4].
All the responses for wanting to know the diagnosis were very straightforward in keeping with the physical, psychological, social and spiritual impact of being diagnosed with a life- threatening disease, reinforcing the fact that a disease affects not only the patient but the family also in multiple dimensions [20,30,31]. The majority wanted to know so that they could get correct and timely treatment and or practice preventive measures [30,31]. Preparation and planning for the future were reasons for many. Another reason was the responsibility and obligation they felt for their family and children. All the given reasons match the findings of a large multicenter UK study [32]. A few stated that it was their right to know [4]. Topmost among the reasons for not wanting to know the diagnosis was the emotional impact of a dangerous life-threatening diagnosis. Another theme was of the ‘fear of finding out’ and having to live with a terrible diagnosis for their remaining life [31,32]. The influence of religion and submission to God's will was apparent in many responses, as some said they will submit to God and therefore do not need to know. This is a reflection of the overarching influence of religion on the beliefs and subsequent cultural practices where submission to and acceptance of God's will actually enables a measure of acceptance and peace in the face of the worst of news [33]. A few said that they do not want to know because of financial issues and/or because of lack of medical knowledge, which highlights the socio-economic aspects of giving or receiving bad news.
4.2. Innovation
This is the first country wide cross-sectional study regarding disclosure of bad news and is representative of the wide ethnic and cultural diversity in Pakistan. The results highlight a key finding that Pakistani patients and/or their family members want the family to know the bad news first. The majority of Pakistani patients and/or their family members want to know the bad news in the context of disease and illness, like in many other countries. However, they prefer the relatives to know first, which is a result of the influence of the predominant culture where family is a collective unit in terms of autonomy and is very involved throughout the disease process. Family members provide support in multiple ways to the afflicted family member during a vulnerable and stressful time.
4.3. Conclusion
The range of these responses calls upon doctors to be cognizant of the different expectations, education, information level and social and economic background of their patients and families, especially when they are giving them life altering news. This conclusion has been reached by other international studies done in countries like Saudi Arabia, Iran, Jordan, Japan and United Kindom where there are large migrant populations [5,20,[33], [34], [35], [36]]. Hence, the communication of bad news needs to be responsive to not just the patient but also the family, friends and community members accompanying the patient. Culture and context, in terms of the actual circumstances of the presentation to the hospital, the severity of the diagnosis, the immediate and long term prognosis where applicable, and the health beliefs of the patient and accompanying relatives needs to be taken into account while communicating bad news and prognosis to the family and patient to avoid dissatisfaction, and, at times, even violence [8,37,38]. The family, many times is trying to shield the patient from the negative impact of the news and their intent is to protect and support the patient during this life changing time. Therefore, acknowledging their concern and communicating with them in a sensitive and empathetic way is necessary. The challenge is to develop, test and validate a model of communicating bad news that takes into account the myriad contextual factors, cultural practices and expectations at the time of communicating bad news based on principles of ethics, in, at times, a volatile and rapidly evolving situation, especially in Pakistan [37,[39], [40], [41], [42]].
Further research on the reasons for deferring the disclosure of bad news to the family firstwill provide more details regarding this finding. The results will enable the development of evidence-based guidelines for training students and doctors across Pakistan in matching the disclosure of bad news with the perceptions and expectations of patients and families. This approach to breaking bad news will make the process of communicating bad news more culturally sensitive and patient centered, resulting in increased patient satisfaction.
Funding institute
This study was funded by a Pakistan Health Research Council PHRC (formerly Pakistan Medical Research Council PMRC) Grant, No: 4-22-16/14/RDC/AKU, Karachi.
Role of the funding agency
The funds were used to pay data collectors and data entry operators and covered postage costs. Research officers of the funding agency supervised the data collection in two provinces.
Declaration of Competing Interest
The authors declare the following financial interests/personal relationships which may be considered as potential competing interests.
Sameena Shah reports financial support was provided by Pakistan Health Research Council (PHRC).
Acknowledgement
The authors are very grateful to the data collectors, data entry operators and the administrative staff at all the study sites for their help and support towards the completion of this study.
Contributor Information
Sameena Shah, Email: sameena.shah@islandhealth.ca.
Asma Usman, Email: asma.usman@aku.edu.
Samar Zaki, Email: samar.zaki@aku.edu.
Asra Qureshi, Email: asra.qureshi@aku.edu.
Saher Naseeb Uneeb, Email: saher.uneeb@aku.edu.
Naseem Bari, Email: drnaseembari@gmail.com.
Fauzia Basaria Hasnani, Email: fauzia.hasnani@aku.edu.
Nasir Shah, Email: nasirshah@yahoo.com.
Saima Parwaiz Iqbal, Email: saima.scm@stmu.edu.pk.
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