Breaking Bad News in a Southeast European Population: A Survey among Cancer Patients in Albania

Abstract

Objective:

The purpose of this study was to explore the attitudes of cancer patients, their family, and community members in Albania, a post-communist country in Southeast Europe, regarding breaking bad news.

Methods:

One hundred and fifty consecutive cancer patients, 150 respective relatives, and an age–sex–residence matched sample of 150 individuals in Tirana district were interviewed from September 2009–January 2010 about attitudes related to diagnosis disclosure. Logistic regression was used to assess the association of diagnosis disclosure with demographic characteristics.

Results:

Community members were the most in favor, whereas the patients' relatives were the least in favor of diagnosis disclosure. Most of the patients, who were aware of their diagnosis, were not satisfied with the disclosure approach employed by the medical staff. The odds of favoring diagnosis disclosure were significantly higher among younger, male, urban, and more educated patients.

Conclusion:

This survey identified important characteristics of cancer patients, their relatives, and a community-based sample in Albania that could predict the willingness to disclose a fatal diagnosis. Establishment of a formal training of health professionals regarding breaking bad news should be considered in order to ensure a proper approach of communicating diagnosis to cancer patients in transitional Albania.

Introduction

Nowadays, being transparent about diagnosis is an accepted approach by both physicians and patients.^1–3 However, it is not always easy to decide on the appropriate time and type of information to disclose. Cancer survivors are considered not only patients who have been diagnosed with cancer, but also individuals who are affected indirectly, including family members, friends, and caregivers.

Similar to in other developing/transitional countries,⁴ cancer is the second leading cause of death in Albania,⁵ where it is estimated that every year 4500–5000 people are diagnosed with cancer.⁶ Albania is still considered a country with taboos, the most important one being, probably, the lack of a formal verdict about whether to, or the best way of, delivering bad news to the patient and family members. This may be because the prevailing opinion is that informing patients about their true fatal diagnosis might hurt them badly.

But what would happen if the patient would be informed correctly about the diagnosis? Would this fact help patients at all? Would this help increase their quality of life? What do cancer-free individuals think about the necessity of informing patients about their real diagnosis? In this context, a survey was conducted at the Oncology Service in Tirana, Albania, aiming to explore the attitudes of cancer patients and their family members with regard to diagnosis communication.

Methods

The survey was conducted during the period September 2009–January 2010 at the Oncology Service of the University Hospital Center “Mother Teresa” in Tirana, the Albanian capital. This is the only center for the multidisciplinary treatment of cancer patients in Albania.

Study population

All consecutive cancer patients (n=150) during the abovementioned time frame were included in the study. In parallel, 150 relatives of the respective cancer patients were also recruited. Furthermore, a random community sample of 150 individuals was interviewed in Tirana district and matched for sex, age and residence of the cancer patients. Characteristics of study participants are presented in Table 1.

Table 1.

Sociodemographic Characteristics by Study Group, Tirana, Albania, 2010

	Family members (n=150)		Cancer patients (n=150)		Community sample (n=150)
Variable	Number	Percent	Number	Percent	Number	Percent
Sex:
Male	42	28.0%	71	47.3%	69	46.0%
Female	108	72.0%	79	52.7%	81	54.0%
Place of residence:
Urban	65	43.3%	66	44.0%	71	47.3%
Rural	85	56.7%	84	56.0%	79	52.7%
Education:
High school	99	66.0%	113	75.3%	124	82.7%
University	51	34.0%	37	24.7%	26	17.3%
Age (mean, SD)	41.0±6.1		52.3±6.4		51.5±7.3

Data collection

A structured questionnaire was used to explore the factors related to fatal diagnosis disclosure. Specifically, all patients were asked the following: “Are you aware of your current diagnosis? Would you like to be informed about the proper diagnosis? If yes, who would you like to communicate this information to you: a physician, or a family member?” and “Are you satisfied with the approach used to disclose the diagnosis to you?”

Covariates included sociodemographic variables such as sex, age, place of residence (urban vs. rural), and educational level.

Statistical analysis

Binary logistic regression was used to determine the predictors of diagnosis disclosure. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated. Statistical significance was set at p≤0.05. All models were checked to comply with goodness of fit assumptions, as described by Hosmer and Lemeshow.⁷ All analyses were performed with the SPSS, version 15, Chicago, IL.

Results

Mean ages of the patients, their relatives, and the random sample of community participants were 52.3 years, 41.0 years, and 51.5 years, respectively (Table 1). There was a significant difference between mean age of patients and that of their relatives (p<0.001).

Cancer patients

Among 150 cancer patients, 100 (67%) were not informed at all about their diagnosis. The only thing they were aware of was that they would undergo a surgical intervention, radiotherapy, or chemotherapy procedure and that they might have a good chance to recover from their illness. Only 10 (7%) patients had full information about their diagnosis, whereas 40 (27%) of them had information about only a few things such as the type of diagnosis and its sequela. Of the 50 patients who knew details of their diagnosis, 42 (82%) of them were not satisfied with the approach through which the diagnosis had been disclosed to them. When asked about whether they would like to receive full information about their diagnosis, 69 (46%) of the patients answered positively. When those who answered “yes” to the abovementioned question were asked to mention the most appropriate person to communicate the diagnosis, 58% of them indicated the physician as the most suitable person, whereas the remaining 42% gave preference to their relatives (Fig. 1, middle panel).

FIG. 1.

Diagnosis disclosure and the most appropriate communicator: cancer patients (upper panel), their relatives (middle panel), and a community sample (lower panel).

Relatives of cancer patients

Of 150 family members of cancer patients, 89 (59%) of them did not want their sick relative to be informed about the diagnosis, and the main reason was the belief that such disturbing information would negatively affect the patient's emotional status. Of family members who considered that patients should be informed, 58% preferred a physician, whereas the remaining 42% preferred family members to communicate the bad news (Fig. 1, upper panel).

Community sample

Of 150 individuals chosen randomly in Tirana district, 105 (70%) thought that the patients should know the truth about their diagnosis in order to be more motivated to fight for their life and engage in more preventive measures related to their disease. Moreover, this knowledge could push patients to search for the best therapy possible, comply better with treatment options, and feel more attached to their family. Conversely, 45 (30%) of individuals considered it is hard to disclose the truth to such patients because this might negatively affect their emotional status and cause their health to further deteriorate, with undesirable consequences also for their family members (Fig. 1, lower panel).

Correlates of diagnosis disclosure

In univariate analysis (Table 2, upper panel), age was negatively associated with the willingness to disclose bad news among relatives of cancer patients and the community sample, but not the cancer patients. Males and urban residents were much more in favor of disclosing the diagnosis than were females and rural residents, respectively, for all the three study groups, whereas educational level was positively associated with delivering bad news only for relatives and cancer patients (OR=2.4, 95% CI=1.2–4.9 and OR=3.3, 95% CI=1.5–7.2, respectively).

Table 2.

Correlates of Diagnosis Disclosure; Unadjusted and Multivariable-Adjusted Odds Ratios (ORs) from Binary Logistic Regression

Unadjusted models
	Family members		Cancer patients		Community sample
Variable	OR (95% CI) ^a	p	OR (95% CI)	p	OR (95% CI)	p
Age (one year)	0.93 (0.88–0.99)	0.023	1.02 (0.97–1.07)	0.451	0.94 (0.89–0.98)	0.009
Sex:
Male	2.94 (1.41–6.13)	0.004	2.23 (1.16–4.28)	0.017	3.81 (1.75–8.33)	0.001
Female	Reference		Reference		Reference
Place of residence:
Urban	2.10 (1.08–4.08)	0.029	2.60 (1.34–5.05)	0.005	2.63 (1.26–5.50)	0.010
Rural	Reference		Reference		Reference
Education level:
High school	Reference	0.012	Reference	0.003	Reference	0.083
University	2.44 (1.22–4.86)		3.27 (1.49–7.17)		2.72 (0.88–8.40)

Multivariable-adjusted models
	Family members		Cancer patients		Community sample
Variable	OR (95% CI) ^b	p	OR (95% CI)	p	OR (95% CI)	p
Age (one year)	0.91 (0.85–0.98)	0.007	0.98 (0.93–1.04)	0.530	0.94 (0.89–0.99)	0.036
Sex:
Male	3.60 (1.62–80.4)	0.002	2.93 (1.39–6.16)	0.005	4.16 (1.81–9.56)	0.001
Female	Reference		Reference		Reference
Place of residence:
Urban	2.23 (1.08–4.58)	0.030	2.63 (1.26–5.49)	0.010	1.86 (0.83–4.15)	0.130
Rural	Reference		Reference		Reference
Education level:
High school	Reference	0.008	Reference	0.008	Reference	0.067
University	2.78 (1.31–5.87)		3.13 (1.35–7.21)		3.11 (0.92–10.46)

Crude odds ratios (ORs) and 95% confidence intervals (95% CIs) from binary logistic regression.

Multivariable-adjusted odds ratios (ORs) and 95% confidence intervals (95% CIs) from binary logistic regression.

On multivariable adjustment (Table 2, lower panel), the association with sex was strengthened in all study groups and the association with place of residence was slightly weakened and lost significance, whereas the association with educational level remained largely unaffected.

Discussion

This survey identified selected characteristics of cancer patients, their relatives, and a community-based sample in Albania that could predict the willingness to disclose a fatal diagnosis. Age was negatively related to the willingness to disclose diagnosis to the patient among relatives of cancer patients and the community sample. Furthermore, being male, urban, and having university education were all associated with a significantly increased likelihood of diagnosis disclosure, and these findings were stable across the three study groups. Some of the findings of this study support the evidence from international literature. A cohort study among cancer patients and family caregivers in Korea reported a negative relationship with age: patients aged 20–59 years were 2.2 times more likely to opt for diagnosis disclosure than those ≥60 years of age, whereas younger relatives were 1.6 times more likely to want to know their diagnosis.¹ The same study reported that male patients were 1.3 times more likely and highly educated patients were 2.6 times more likely to want diagnosis disclosure than were females and less- educated patients, respectively, and similar findings were observed among family caregivers as well.¹ Another study reported a positive association of diagnosis disclosure with age and male sex, but a negative relationship with education in a pooled analysis between patients and relatives.⁸

The current survey indicates that 67% of cancer patients in Albania have no information about their disease and 27% know only a little. Less than 50% of the patients wanted to know their true diagnosis. Conversely, 59% of family members did not want their sick relatives to be informed about the true diagnosis, and the majority of those who thought the patient should be informed were of the opinion that the physician should deliver the bad news. Community participants displayed opposite attitudes: the majority (70%) were in favor of diagnosis disclosure and 77% of those in favor thought that the physician was the most suitable communicator.

In a Korean study, 79% of patients and 70% of relatives opted for diagnosis disclosure¹ compared with 46% of patients and 41% of relatives in Albania. Regarding the most suitable communicator, 58% of patients and relatives in Albania preferred the physician, compared with 84% of patients and 53% of relatives reported in another study.⁸ In some studies, the physician was considered to be the most suitable person to break bad news to patients.^8,9 Such study differences may be related to different sociocultural factors in different populations.^9,10 Albanians have strong family ties and, therefore, relatives may play an important role in making decisions about diagnosis disclosure. This may partially explain the high rate of uninformed patients in this study.

What happens with somebody's life when a life-threatening diagnosis is disclosed? Does the diagnosis communication positively or negatively affect the physical and emotional life and all other factors related to the patient and that person's familiars? How is the patient's quality of life affected during cancer therapy? In case of survival, will the patient be the same person as before? Many researchers have tried to adequately address these questions. Parker et al. have highlighted three essential elements in communicating diagnosis to the patient: 1) content of the information; 2) setting, and 3) emotional support during the conversation.¹¹ Method of disclosure is also important.^12,13 According to the patients, the most important element is the technical expertise of the physician, but the communication style is important as well.¹¹ A study among 31 physicians in different specialties in Australia confirmed three bad news communication styles, namely, the blunt, forecasting, and stalling styles.¹⁴ The blunt style involves the communication of bad news within the first 30 seconds of a conversation without much information given; the forecasting style involves delivering of news within the first 2 minutes, taking into account the level of information of the patient, and the stalling style takes more time but it is ambiguous and avoids explicitly delivering the bad news. These styles could be used to shape trainings about breaking bad news.¹⁴

Ptacek and others suggested that setting is very important for diagnosis disclosure:^{10,12,13,15,16} a quiet place was associated with a 23-fold increase in patient satisfaction during diagnosis communication compared with noisy or uncomfortable places.¹⁵ Other important factors included the physician's empathy, preceding the bad news by an anticipatory warning^15,16 and being supportive, caring, and compassionate.^12,13,15,16 The quality and completeness of information coupled with the physician's emotional support were considered important factors in breaking bad news appropriately in another study in France.¹⁷

Alternatively, the process of a patient's understanding of the bad news is complex. Morse concluded that being told bad news is only one part of the patient's knowing. Furthermore, the actual communication of bad news could be perceived with greater intensity when the patient is prepared for such an eventuality. Finally, hearing bad news does not necessarily imply comprehension, as this may require an indefinite amount of time.¹⁸ Therefore, in the context of rapid technological and medical developments, the appropriate disclosure of a fatal diagnosis should ultimately enable the patient to provide all the comprehension and attention the situation requires.^18–21

Communicating with terminally ill patients involves end-of-life care and ethical issues as well. Frequently, in end-of-life care, pain management becomes a top priority, as relief from pain is a fundamental patient right.²² However, acting in the best interest of terminal patients and their families is not always a straightforward choice, and terminal sedation often poses ethical dilemmas.^23–26 The decision whether to apply palliative sedation to suffering patients is a classic yet unresolved issue;^25–28 distinguishing more than one dimension of human suffering, the American Medical Association argues that palliative sedation is not always indicated, disagreeing on the grounds that this denies such relief to a group of patients.²⁷ However, Cassell and Rich conclude that “suffering in patients in the terminal stage of illness deserves consideration for palliative sedation depending on the patient's needs and wishes without regard to what is believed to be the originating source of suffering.”²⁹ Conversely, another report concluded that it is “an ethically appropriate procedure.”²⁴

The principal worrying aspect in the Albanian context is that most of the terminal patients understand that they are seriously ill only in advanced stages, having been given false hopes about their diagnosis for a long time. This fact might have consequences for the patient's quality of life. Under these conditions, the patient may not be interested in seeking further specialized care. In this phase, the physical and psychological aspects are exacerbated further.

Based on the findings of this study, the authors consider that patients should be told their true diagnosis. Findings from the current survey suggest that, in contrast with in many other countries,¹⁵ the overwhelming majority of patients who knew some detail about their diagnosis (82%) were not satisfied with the disclosure approach employed by the medical staff. Lack of professionalism in communicating bad news by the physicians, lack of compassion, and the process of disclosure being “too mechanical” were the main complaints of cancer patients in Albania.

A good strategy for communicating bad news to cancer patients in Albania could be the SPIKES protocol, a step-by-step procedure facilitating the process of disclosing unfavorable information.³⁰ However, there is a need for formal training to acquire the necessary skills of diagnosis disclosure.^30–35 In many countries, there is no formal and/or appropriate training regarding the communication of bad news to patients.^34,36,37 A study among radiologists in the United States showed that 85% of diagnostic imaging specialists were never trained in disclosing bad news and their level of comfort in communicating bad news declined with the increasing of severity of the news.³⁸ In Albania, also, there is no training for communicating bad news to terminal patients. There is strong evidence suggesting that such skills can be acquired by formal training. A randomized controlled trial in the United Kingdom among oncologists demonstrated that physicians in the intervention group had significantly higher rates of using focused questions, showing empathy and giving appropriate answers to patients' concerns, and had lower rates of using leading questions.³¹ Those who were trained in use of the SPIKES instrument showed increased confidence in appropriately disclosing a fatal diagnosis.³⁰ Disclosing the fatal diagnosis in an appropriate manner can improve the medical staff's empathy and communication skills,³⁴ ease the pain of the patients, and push them to comply with recommended treatments.¹⁶ Conversely, lack of training could lead physicians to withhold the information from patients, thus not disclosing the diagnosis.³⁹ In Germany, palliative medicine will be a part of undergraduate curricula by 2013, recognizing the need and the positive impact of formal training for delivering bad news.⁴⁰ Future training efforts may include ethical aspects and team approaches in delivering bad news more appropriately.⁴¹

Conclusion

In the context of rapid changes that have taken place in Albania after the 1990s, such as the modernization and opening to Western cultures, technology developments, the possibility of Internet access, and the achievements in the health sector including the oncology domain, where cancer is not necessarily a fatality, the authors consider that diagnosis should be communicated to the patient from the very first moment the medical staff is aware of it. Suitable approaches and settings should be considered for proper communication of the diagnosis in order to help patients to cope with the disease and its consequences. Probably, the best way to ensure this goal is to establish a formal training program for medical staff in Albania regarding breaking bad news appropriately.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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