1 Introduction

Though cancer and other non-communicable diseases are a growing concern in Ethiopia and Sub-Saharan Africa [1–3], Ethiopia’s healthcare resources are currently primarily directed at the prevention and treatment of communicable diseases, such as malaria and diarrhea [4]. Doctors and nurses are in short supply and oncology services are scarce [5, 6]. The Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa is the country’s sole specialist unit for cancer care. Currently, it treats about 10 000 patients per year, while the estimated annual incidence of cancer is over 60,000 cases and the annual mortality is over 44,000 cases [4, 7, 8].

The hospital’s Chemotherapy and Radiotherapy Center is the only facility that provides radiotherapy services to cancer patients in Ethiopia [9]. The working conditions are challenging, with few senior oncologists, mainly junior physicians, a handful of nurses, a lack of resources (at the hospital as well as among patients), and an enormous influx of patients from all over the country. This primarily affects the prerequisites for effective and ethical patient consultations. Patients wait for weeks to see a doctor and many depart without having received any therapeutic or preventive assistance. They are usually accompanied by family members or other caregivers, who are present when initial information is given, the results from the diagnosis are addressed, and treatment options are discussed. Handling these meetings effectively is essential in order to help as many patients as successfully as possible within the limitations mentioned, and to achieve ethically acceptable health communication and patient-centered care [10, 11]. Thus, research is needed to understand the communicative challenges involved in order to handle meetings between doctors, patients and caregivers more effectively in practice and to provide high-quality care [12].

Few studies on communication in Ethiopian health care are available in general, and in cancer care in particular [13, 14]. Cancer awareness and knowledge in Ethiopia is low, especially relating to cervical cancer [15], but also regarding breast cancer [16]. In addition, the lack of a national screening system and low access to relevant healthcare service reportedly contribute to inefficient testing and late diagnosis and treatment, which results in many women seeking help too late [14, 17–19]. There are also barriers that prevent many Ethiopians from seeking medical help such as a sense of hopelessness and anxiety [9], a fatalistic attitude [20], stigmatization and social isolation in relation to particular diagnoses (for instance, the etiology of cervical cancer is thought to be due to breaching social taboos or engaging in unacceptable behaviors [18]), ignoring early signs and symptoms [21], a lack of resources to cover treatment costs, and a tendency to turn to traditional healers in the first instance [14, 22].

Patients’ families play an important role in the treatment process. Besides covering travel and treatment costs [6, 23], a patient’s family plays an important role in decision making and especially in breaking bad news [24]. In Ethiopia, in the case of terminal illness, the disclosure of bad news to patients is discouraged by family members, who often believe that it may lead to unnecessary distress, loss of hope, and worsen their ill relative’s condition [25].

The aim of this study is to explore communication in Ethiopian cancer care from the perspectives of physicians, patients, and family caregivers.

2 Material and methods

3 Results

The findings reveal eight main themes relating to communicative challenges in oncology care. These include:

Theme 1. Workload and time pressure

Theme 2. Lack of privacy

Theme 3. Managing language problems

Theme 4. Delivering bad news

Theme 5. Decision making

Theme 6. Illiteracy and cancer awareness

Theme 7. Traditional and religious treatments

Theme 8. Stigmatization and fatalism

The physicians reported that many communicative challenges stem from the unfavorable combination of an extreme influx of patients and a shortage of physicians, which results in an overwhelming workload and difficulties in allocating sufficient time to their patients and family caregivers (Theme 1. Workload and time pressure). The physicians mentioned that they are aware of not providing all information to patients and family caregivers and that some information is underprioritized:

Doctors tell patients everything, for example, the side effects. This approach is not commonly applied in Ethiopia. But in practice it should happen. (Dr. male 9)

Patients and family caregivers were also frustrated at not being given sufficient consultation time. Though many described their communication with physicians positively, some were concerned about not getting enough information. A female family caregiver commented:

Most of the doctors are very nice and humble when they speak to you. But when you ask them information about the diseases, they don’t usually give you adequate information. I knew nothing about cancer before, and this is the right place to get information, but they don’t give you enough. Maybe they don’t have enough time. (Careg. female 31)

Lack of time becomes especially challenging in relation to breaking bad news and managing emotional reactions (Theme 4. Delivering bad news), as many physicians simply have no time to provide emotional support to their patients:

The doctor told me that “you know your patient has reached the fourth stage. She was supposed to take chemotherapy three weeks after the operation.” First, I didn’t know anything about the cancer stages. Second nobody has informed my patient or me about the chemotherapy after the operation. All the information we obtained was to wait six months in the queue. After the bad news I felt terrible, couldn’t control myself, all the emotions came at once and we didn’t get any help from the doctor… that was so devastating. (Careg. female 3)

Another factor influencing communication was lack of privacy (Theme 2. Lack of privacy). The patients in the outpatient department were often examined in a small office-type room with one stretcher, and other people, in addition to the physician, nurse, and family caregivers, might be present. As other people could hear sensitive information, it creates stress and an unwillingness in patients and family caregivers to disclose their concerns freely. Other staff and patients could also interrupt interactions at any time:

Either nurses or other patients always interrupt them (doctors) while they are talking to you. (Careg. male 10)

Interrupting interactions can be especially problematic when patients and physicians experience language barriers in communication (Theme 3. Managing language problems). Ethiopia is characterized by cultural and linguistic diversity. Though Amharic is both the country’s official language and the working language at TASH, many patients from rural areas often speak other languages (for example Oromo), and have problems understanding the staff. When communicating, both the physicians and the patients reported having to rely on other patients, staff, and family caregivers to manage interactions:

Most of the patients come from the Oromia region, and most of us cannot communicate in Oromo. We try to use nurses, attendants or other patients to provide basic information. (Dr. female 5)

Using family caregivers who can speak Amharic is a common option, though it is not always unproblematic. It is often both time consuming and stressful, as uncertainty concerning understanding and problems with expressing what is meant are reported:

One of the problems I have here is language. I do not speak Amharic, I speak Oromo. Most of the doctors speak Amharic, so I have to always come with my family caregiver who can speak Amharic. There were instances where my family caregiver was not around and I had to deal with the doctor alone. That was too difficult, I must say. Even if your family caregiver or others around you can help you by interpreting, there is always a kind of misunderstanding and also it is so difficult to express your feelings when your family member is the one who is interpreting. (Pat. female 6)

In relation to interpreting, in the video-recordings of hospital rounds patients were observed being “left outside” and family caregivers tended to dominate the interactions with the physicians. In the interviews, the physicians were aware of this problem, and often made attempts to involve the patients, as illustrated in Excerpt 1 below:

1. Excerpt 1.
2. Doctor: When did the disease begin?
3. Family caregiver: Hum… she…
4. Doctor: No, ask the patient.
5. Family caregiver: (Interprets from Oromo to Amharic)
6. Patient: Five months.

Here, the physician explicitly asked the family caregiver to interpret and ask the patient to answer the question herself.

Patient exclusions were observed in the interactions, when bad news was broken, as in Excerpt 2 below:

1. Excerpt 2.
2. Doctor: What was said there in the Gynecology Department about the uterus?
3. Family caregiver: She gave a sample from the uterus and we are waiting for an appointment to know the result.
4. Doctor: Um, were you not informed about going to the Radiotherapy Department for treatment?
5. Patient: No.
6. Doctor: (Turning to the family caregiver) Was the patient informed about cervical carcinoma?
7. Family caregiver: They informed only me.
8. Doctor: What about the patient?
9. Family caregiver: No, she doesn't know.

In this case, the patient could not interact with the doctor, because she hardly understood Amharic, and most of the communication was through the family caregiver. The excerpt illustrates that this patient was apparently not informed about her diagnosis, and the family caregiver was the only one who received the information. According to the physicians, patients, and family caregivers, bad news was often given to the family, rather than to the patients (Theme 4. Delivering bad news):

It is inappropriate to tell patients that he/she has cancer. Instead of telling the patients tell their family caregivers. (Pat. female 33)

A common reason for not telling the patient mentioned in the interviews is the belief that giving bad news can upset the patient, which is considered unnecessary in the case of a poor prognosis. The physicians, patients, and family caregivers agreed that it is the family that is often responsible for making decisions and taking responsibility for a patient’s care (Theme 5. Decision making). This is especially true for minors and women, and male family caregivers are often the decision makers:

Usually, male family members are the ones who make decisions for the patients, especially if the patient is a child it’s often the father who makes the ultimate decision. In some cases, the doctors ask male family caregivers to leave to have a chance to communicate with the female patients. (Dr. female 2)

Excerpt 3 below illustrates what was mentioned in the interview above. The physician explicitly asks the patient’s father to leave the room in order to talk to the female patient alone:

1. Excerpt 3.
2. Doctor: (To the female patient) Show me the medicines you have now. (The doctor is shuffling the file of the patient) There is something you haven’t told me, right?
3. Family caregiver: Who?
4. Doctor: The patient.
5. Family caregiver: For whom?
6. Doctor: (Talking to the female patient) There is something that you haven’t told me. (Turning to the family caregiver) Okay, you wait for me outside. Let me talk to her.
7. Doctor: (Calling the patient by her name) Are you married?
8. Patient: Yes.
9. Doctor: Who is your husband?
10. Patient: This is my father (Pointing at her father who left)

As the interaction proceeds, the physician finds out that the patient had previously had an abortion, which was probably difficult for her to discuss in front of her father. The doctor also realizes that the patient had not told him about the medicines she was taking:

1. Excerpt 4.
2. Doctor: This one was your first pregnancy?
3. Patient: Yes.
4. Doctor: Why did you take one round on the 8^th floor and then came here. You didn’t tell me. (Looking at the patient) Why didn’t you tell me that you took the first treatment there and the medication had worked?
5. Patient: I don’t know.
6. Doctor: Why did they send you back here?
7. Patient: I don’t know.

Excerpt 4 illustrates that the patient seems to experience problems understanding the treatment process. A possible reason could be a low awareness and knowledge of cancer, which, together with a low literacy level, complicates physician-patient communication (Theme 6. Illiteracy and cancer awareness):

The major gap between physicians and our patients is literacy level. Most of the patients are illiterate… the other thing is cancer has become a more prominent disease in recent years. So most patients are not aware of it even if they are literate. (Dr. female 1)

Illiteracy and lack of awareness of cancer, as well as living in rural areas far from hospitals often leads patients to seek professional help too late. The physicians mentioned that many patients come to TASH only after receiving treatments from traditional healers (Theme 7. Traditional and religious treatments). At this point, the cancer has often spread too far, and the physicians can only inform about poor prognosis and provide palliative care:

Most of the patients who come from rural areas first try traditional medicine and if it does not work then they come to hospital. By the time they come the cancer has already spread. (Dr. male 1)

In addition, as many Ethiopians are Orthodox Christians, one of their central beliefs is in the power of religion and holy water from the church to cure diseases:

The Orthodox Christian patients often take holy water, and the problem is that they cannot combine medicines and holy water, so they discontinue medical treatment and take only holy water. If the holy water does not help them, they return to the hospital and usually they come when the cancer has progressed to the next stage. (Dr. male 3)

In excerpt 5 below, the physician is talking to a patient who came to TASH two years after being diagnosed with cancer:

1. Excerpt 5.
2. Doctor: When did you get ill?
3. Patient: It was two years ago. I came here after two years.
4. (She leads his eyes to the other direction)
5. Doctor: Where did you get your diagnosis, is it here at Black Lion Hospital or at another place?
6. Patient: I was examined at Metehara (a town in central Ethiopia) and they told me it was cancer.
7. Doctor: What type of cancer?
8. Patient: Breast cancer, and they referred me to Tikur Anbessa, but some people told me that traditional medicine was good and I used it for two years. Then I came here.
9. Doctor: Did you observe any effects taking traditional medicine?
10. Patient: No change at all, and I got worse, and they referred me here (looking at the doctor).

The excerpt shows that the patient avoids looking at the physician while talking about coming to the hospital two years after being diagnosed with cancer and taking traditional medicines instead. It may indicate feelings of regret and being uncomfortable talking to the doctor about avoiding hospital care. Answering the question about the effects of traditional medicine, the patient is looking at the doctor, mentioning that she got worse, which possibly indicates her hope of getting help from the doctor.

According to the physicians, delays in receiving treatment were also related to stigmatization in relation to cancer (Theme 8. Stigmatization and fatalism). This also influenced their communication with patients. The physicians mentioned that the majority of female patients with breast and cervical cancer found it difficult to discuss their disease. For instance, in most parts of Ethiopia sex was something that people do not talk about openly in public or private, and women with cervical cancer were stigmatized. Talking about cancer also often lead to being isolated from family and society. Some people confused cancer with HIV, thinking that cancer is a communicable disease and so they avoid cancer patients. As a result, many patients asked physicians not to mention their cancer diagnosis:

When patients request sick leave, they usually tell us not to mention the diagnosis because if their colleagues find out about their disease, they might exclude them or treat them differently. Patients with breast cancer have very limited sick leave annually but patients with HIV/Aids have unlimited sick leave. (Dr. male 8)

Excerpt 6 below illustrates a patient trying to avoid spreading information about his condition and keeping the information even from close family members:

1. Excerpt 6.
2. Doctor: Did you tell your family that you have cancer?
3. Patient: I only told my wife umm…
4. Doctor: Didn’t you tell anybody else?
5. Patient: My wife and child. No one else knows. Neither my mother nor my father knows about my condition.
6. Doctor. How old is your child?
7. Patient: He is seven, going on eight.
8. Doctor: So you need to be strong, right?
9. Patient: Well, yes. What can you do if it’s God’s punishment? You just accept it.

The excerpt also illustrates the perception of cancer as God’s punishment and how the patient accepted it, which could potentially influence their willingness to undergo treatment.

4 Discussion

5 Conclusions and practice implications

The study highlights how communication in Ethiopian cancer care can be negatively influenced by socio-economic and cultural factors. Assuming that the surrounding structural contexts of Ethiopian cancer care will not change rapidly, there is a need for organizational development to better meet the communicative challenges that exist. In addition, strategies to help respond to this situation may include that staff, such as nurses or lay patient counsellors, are given more health communicative responsibilities, and that logistical ways for staff to speak to patients independently of the family are developed. At another level, future professionals need better health communication training (for example, through including such skills in training oncology specialist authorization for doctors and nurses). The delicate ethical dilemmas related to balancing patient and family communication, and the related decision-making authority, may require special guidelines that accommodate the unique challenges in Ethiopian cancer care. A greater focus on the ethical dilemmas of managing communication when a family member asks to withhold vital information from a patient is needed, as refusing to comply may impede the patient’s ongoing access to healthcare. The integration of communication training for medical students in Ethiopia, with a focus on an ethical guideline for family-centered patient consultation suitable for these circumstances, would be an essential step.

Supporting information

Acknowledgments

The authors wish to extend our sincere thanks to all the physicians, patients, and family caregivers who participated in the study. We also wish to thank the nurses who supported data collection. The authors also wish to thank Alexander Almér, Urban Nuldén and Abebe Bekele for their support with the initiation of this project. We also thank Dr. Christine Yates for proofreading the paper.