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| ORIGINAL ARTICLE |
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| Year : 2022 | Volume
: 2
| Issue : 2 | Page : 82-91 |
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Breaking bad news to patients: A qualitative study of views of patients' relatives
Kabindra Bhagabati1, Samujjhal Bharadwaj1, Anindita Das2, Tarun Sonowal3, Uttam Changmai1
1 Department of Palliative Medicine, Dr B Borooah Cancer Institute, Guwahati, Assam, India
2 Department of Nursing, Dr B Borooah Cancer Institute, Guwahati, Assam, India
3 Department of Medico Social Work, Dr B Borooah Cancer Institute, Guwahati, Assam, India
| Date of Submission | 16-Sep-2022 |
| Date of Decision | 06-Oct-2022 |
| Date of Acceptance | 07-Oct-2022 |
| Date of Web Publication | 18-Nov-2022 |
Correspondence Address:
Dr. Kabindra Bhagabati
Department of Palliative Medicine, Room No 31, OPD Building, Dr B Borooah Cancer Institute, A K Azad Road, Gopinath Nagar, Guwahati - 781 016, Assam
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/aort.aort_22_22
BACKGROUND: In India, relatives do not want to disclose the diagnosis to patient. The aim of this study is to know what are the views, beliefs, and concerns of patients' relatives about disclosure of the diagnosis and prognosis to patients.
MATERIALS AND METHODS: The study was conducted at a tertiary cancer center in India. It was a qualitative research with grounded theory approach to study and understand the matrix of information sharing to cancer patients by the caregiving family members. Information was collected by asking to answer a questionnaire in their own language, which was transcribed to English language. This has been certified and approved by the hospital ethics committee.
RESULTS: Fifteen eligible and consenting participants of patients' relatives were recruited during their first visit to the outpatient clinic. Patients were selected randomly from the age group of 18 to 60 years having cancer but without having any metabolic diseases. Although 93.3% of the patients were eager to know the information, only 20% of the relatives wanted to disclose diagnosis and 33.3% wanted to disclose all information to patients. Most of the relatives were concerned about the psychological breakdown and depression of patients.
CONCLUSION: Several apprehensions were expressed by relatives regarding breaking bad news (BBN). The importance of BBN to patients in relation to enhance the trust between doctor and patient relationships and to improve the quality of life of patients should be conveyed to relatives, to assure them for improving better patient care.
Keywords: Bad news, breaking, communications, concern, patient, relative
How to cite this article:
Bhagabati K, Bharadwaj S, Das A, Sonowal T, Changmai U. Breaking bad news to patients: A qualitative study of views of patients' relatives. Ann Oncol Res Ther 2022;2:82-91 |
How to cite this URL:
Bhagabati K, Bharadwaj S, Das A, Sonowal T, Changmai U. Breaking bad news to patients: A qualitative study of views of patients' relatives. Ann Oncol Res Ther [serial online] 2022 [cited 2023 Mar 29];2:82-91. Available from: http://www.aort.info/text.asp?2022/2/2/82/361494 |
| Introduction | |  |
Bad news means the information that changes the patient and their relatives' views for the future.[1] It can be an information about diagnosis with dreaded diseases, treatment failures, disease recurrence, poor prognosis, disease spread, no curative options available, being terminal and so on.[2]
The breaking bad news (BBN) to patients is still a controversy. Majority of the doctors in the USA preferred telling the truth to the patients. However, the approach of BBN differs from country to country.[3] In countries such as the USA and Northern Europe, doctors do BBN to patient as a normal process,[4],[5] whereas in Southern and Eastern Europe and in Asian countries, relatives want to protect their patient from bad news.[6] There are also differences in how much information the patient and the relative wants about their disease. The study in Spain and Canada showed that Canadian patients and relatives wanted to know everything in details, while in Spain, 89% of family members wanted to disclose in full to the patient.[7] But, numerous study results show that patients generally desire frank and empathetic disclosure of a terminal diagnosis or other bad news.[8] Some cultures think that it is harmful for the patient. It violates the principle of nonmaleficence.[3] Many Chinese families object the truth telling to the patient. Some experts wish to respect the family wishes. The doctors in mainland China inform the family members first instead of the patient.[3]
Doctor or the caregiver is obliged to speak out the truth if the patient wants to know. Patients' interest is to be protected based on ethical principles, and therefore, has the right to know what is happening to his body but not obligated to hear BBN. It becomes a duty for the doctor or the caregiver to convey the right message.[9],[10] Medical ethics also highlighted about patient autonomy and hence has the right to know what is happening in his body. It becomes a duty for the doctor or caregiver to convey the right message.[9],[10]
Difficulties in handling the patient relatives along with misconception can be avoided with breaking the bad news. It helps in mutual support also. People usually cope better with truth than with uncertainty.[1] Sometimes, people move from hospital to hospital looking for better and curative treatment, if he is not informed properly and adequately. BBN also helps the patients and families to prepare for the future such as writing a will, doing things which they want to finish before dying and which would not have been done if they do not know about incurability of the disease.[11]
The importance of giving bad news sometimes gets hampered by the collusion of family and relatives with the doctor.[12]
The aim of the study was to know preferences of the patients' relatives regarding breaking the news to patients. The objectives of the study were to find out the views, beliefs, and concerns of the patients' relatives about BBN of diagnosis, disease status, progression of disease, futility of curative treatment etc. This was a grounded theory approach for the study.
| Materials and Methods | | |
Setting
The study was conducted after approval from the institutional ethics committee. It was a study among the patients' relatives of a convincing sample of patients referred to outpatient clinic.[13] This is a palliative care unit having outpatient clinic, in patient care, day care, and home care facilities attached to a tertiary cancer center. All patients coming to the clinic are already diagnosed as having cancer. The patients selected randomly between the age group 18 and 60 years having cancer and without any metastatic disease. All adult patients between 18 and 60 years of age were selected because patients' relatives should not be blindly affectionate to patient as that in younger age group. Also, the patient should not be having any comorbid illness because this may be another cause of not telling the patients' diagnosis by the relatives fearing this may increase the morbid condition of patient.
Recruitment
Consenting participants (male and female) of patients' relatives among the age group of 18–60 years were included in the study. Patients' relatives were addressed when the patient registered for the first time in the outpatient clinic of the palliative care unit.
Potential participants (patients' relative) were told about the study during their first visit to palliative care unit with assurance that the study is not going to interfere with the treatment that you opt for here in this institution. If interested, they were given an information sheet along with detailing of the study.[2] For those people who returned the consent form, the questionnaire was handed over and asked to return as soon as after filling it up at a location where they felt most comfortable (at their home, workplace and hospital etc.).[2],[14]
Interview
The study was conducted by collecting information from the participants about BBN to patients. A questionnaire was designed to conduct the study to acquire the relevant information in the exploratory survey.[15] The broad topics of questionnaires included: How did you come to know about the diagnosis; does your patient know about the diagnosis, if yes what was his/her reaction to it; do you think your patient should be told about the diagnosis; what are your views about BBN to patient?[15]
Relatives were encouraged to narrate their feelings, apprehensions, beliefs, views, and concerns regarding BBN to patients in their own language. The participants knew in advance what they were supposed to write and did not complaint about the contents while completing the questionnaire.[16] Many attendants have written it in English. There were some people who wrote in local language only. We then transcribed into English by an independent and experienced transcriber.[2]
Analysis
The information sheet received from participants and also the transcripts were reviewed as they were produced from participants. Thematic content analysis[17] was used to develop codes and then concepts. These concepts were used to develop categories and later tried to find a theory from the data collection. Some degrees of referential analysis were also made.
All transcripts and information sheets were reviewed and re-read and annotated according to index.
| Results | | |
A total of 15 participants were recruited for the study. Among them, 9 were male and 6 were female; their median age was 42.5 years (range: 27–58 years). Other characteristics are given in [Table 1]. All participants were Assamese-speaking Aryans, but 11 were conversant in English language also and answered the questionnaire in English. Others answered in Assamese language.
Seven participants completed the questioners in hospital wards where the patient was admitted. Three participants completed in the outpatient clinic and 5 had taken the questionnaire to home and returned after 2 days.
The characteristics of patient's participants are given in [Table 2].
It has become apparent from the study that 53.3% of the patients' relatives want to disclose diagnosis and disease status, but some of them also fears that letting them know the disease status may hamper patients emotionally. Only 20% of the patients' relatives want to disclose the diagnosis [Table 3].
Analysis of data sheets and transcripts identified 7 different categories. Within these, a range of themes have emerged.
- Amount of information to be revealed to the patient
- The time when BBN should be done
- The way of revealing the bad news to the patient
- Interest of patient to know the diagnosis
- Views of patients' relatives about BBN.
Amount of information to be revealed to the patient
Relatives who wrote about disclosing bad news to patient also expressed fear about letting know the disease status. “Patients should be told about the diagnosis but not the incurable status as it might break the hope and will power of the patient” (Relative 9).
It has become apprehension for the relatives that patient may harm himself should he knows his disease status – “He may tend to do suicide if he knows his disease has become incurable” (Relative 10).
It is seen from the data that 5 (33.3%) of relatives wanted to disclose everything to the patient. Only 3 (20%) wanted to disclose diagnosis only and 7 (46.7%) relatives did not want to disclose anything to the patient [Table 3].
Relatives refer age as a factor. Older the age, information be shielded as they tend to be mentally fragile. Relative No 15 informed – “In this age she is not mentally strong enough to be told rather I would prefer she stays happily till her last date.”
Relatives consider withholding bad news indirectly respects patient's desire to live longer – “I do not want to reveal much as he is aged now and he wishes to live long” (Relative 3).
Another relative consider deterring effects of BBN on family income particularly in younger age group – “Depending on age factor information should be given. Young people should be avoided as being the earning member” (Relative 2).
Relatives also expressed fear about negative impact of the information shared to the patient. “If we give too many negative information about one's disease, it may hamper the mental well-being of the patient which in a way affect the physical and psychological health as well leading to deterioration of the total well-being” (Relative 5).
Relatives think that not telling the diagnosis and disease status works as a tonic for them – “The patient should not be told directly about the diagnosis or incurability status, rather he should only be encouraged which will act like a great tonic” (Relative 12).
If the patient is in pain and with other physical distressing symptoms then their relatives thinks that disclosing disease status will worsen the situation only. “I don't want to give him more trouble, because he is in severe physical problems” (Relative 14).
Apart from the above situations, some of the relatives are optimistic about telling the truth also. “If we disclose slowly, affectionately and with addition of some encouraging words, it will definitely help because it will make her aware of her bad habits like chewing tobacco more than 20 times a day till now” (Relative 7) and “So that she can fight with courage against it, if she knows the actual situation” (Relative 8).
In addition to that, letting know the disease status to the patient will set him free rather than a false hope of curability. “It is better to make him aware about incurability than to give him a false hope of life” (Relative 1).
Physically and mentally strong patients' relatives are in favor of disclosing the incurability status of patient as they tend to think they are mentally strong enough to hear the news.
“I feel it depends on the patient, his or her capacity to take the news. If the patient is strong than the patient can be told about her disease and also the status” (Relative 4).
Apart from all of the above, wise relatives whose patient is also well educated, does not hide anything from the patient since beginning. In these cases, patients are also very eager to know what is happening.
The time when breaking bad news should be done
There practically seems to be no definite time as to when the BBN should be done, given by the patient or the patients' relatives. Some relatives wanted to disclose the diagnosis at the start of the disease and not in the advanced stage (Relative 4). Relative 9 also expressed the same timing – “Patients should be told about the diagnosis at the beginning but not in the advanced stage as it might break the hope and willpower of the patient.” Another relative (No. 7) informed “Patient knows only about 70% of the disease but does not know about this status and still thinks she would be cured with treatment. Hence, we don't like to do BBN at this stage.”
Right from the time of diagnosis, till the time of treatment, the patient undergoes through various phases and changes in mental attitude. The patient or the sufferer goes through various depressive moments and is filled with utter dismay and hopelessness. But this is a stage, when simultaneously there arise numerous thoughts and perceptions in their mind regarding the status of the disease, its extent and curability of the disease.
In other words, if a patient arrives at the outpatient department and is curious to know about the disease and other related information, it is the prime duty of the physician to give all relevant information regarding the disease. So, before BBN to the patient, the physician needs to keep several things into account.
According to relative no. 3, “BBN should be done at the time of diagnosis so as to avoid miss flow of information and avoid negative attitude, which might hamper the treatment procedure.” But other relative thinks differently. Relative no 10 stated that, “ BBN should not be done to the patient, as it will lead to hopelessness and denial/refusal of treatment, as the disease will no longer be curable.”
Another difference in opinion was felt by the interpretation of relative no 13 who states that, “BBN should be done but not in one go, but slowly and gradually, taking into account the psychology of the patient and at the same time give some hope so as to cope up with the situation, and this in turn will bring out a positive and challenging attitude in the patient.” Relative no. 1 expressed that BBN is necessary, it should not be told directly but slowly and looking at the patient's mental state, even if it takes several days to say he truth.
Again, we find a different perception in relative no. 15, who says,” BBN is the most and can be the worst event in a person's life, which can mentally give a shock to the patient and can even lead to death after getting such a grave news.”
The way of revealing the bad news to patient
BBN to patient and relatives is an art. The doctor or anyone revealing the diagnosis should take certain things in mind – whether the patient wants to know the diagnosis or disease status, how much he knows about it and how much he wants to know it. Relatives also want the doctor to reveal the diagnosis in a slow and affectionate way.
“The doctor explained in a very nice manner about the disease of my patient. He explained everything in details and also resolved all the queries in our mind. He gave us immense time to cope up in the reality of life and supported us” (Relative no. 4).
The explanation of each queries by patients and relatives in patients' language is important in BBN. Giving time to express their feelings in between helps in patients and relatives to cope up with the situation.
Relatives want the doctor to reveal the disease status slowly along with the ongoing treatment. It may take several days. Relative no. 1 suggests “the patient should be informed by the doctors as well as by the family members that the disease he is suffering from is incurable.” This statement shows that the patient also believes the relatives statement if it supports the doctor's saying. Information sharing and counseling of patient and relatives is important in BBN – “BBN of incurability of the disease should be informed and counseled to patient party” (Relative 9).
Some relatives want to reveal every information straight away, especially if they think that it is a right of the patient to know the disease and the status and they inform the patient every time a new important information comes up – “First diagnosis was through endoscopy and the physician straight away revealed as the patient was in apprehension and was asking for the diagnosis” (Relative no. 13). They also think that it is not easy for the physician to break the news as it is mentally exhaustible – “BBN has always been an extra burden for specialists, especially when it comes to diagnosis of cancer” (Relative no. 13). If it is communicated well, it will bring a positive atmosphere in patient's mind as well as among relatives – “The incurability factor if communicated well then it can lead to acceptance and adjustment of the disease” (Relative no. 13).
In some cases, BBN was done to relatives first as she was showing the reports to doctor – “The information about incurability of my relative was being disclosed to me” (Relative 5). She also stated – “It was done in a moment, when the treatment was going on and there was no good response to the treatment.”
Apart from that, in our study, we also found out that BBN was done by primary physician or a surgeon in a blunt way – “After getting all the reports, the doctor said to us that his disease has become a bit old and treatment of this type of old disease is not possible” (Relative no. 6). This information is neither specific nor assuring. In some cases, treatment by oncologists started without giving proper information and they came to know about diagnosis/status after coming to palliative care department only. “I came to know about the incurability of my patient through the reports only. Later when the patient came under palliative care, we recognized that it is cancer and not curable now, and we started accepting things as it was” (Relative no. 15). “We have come to know after the report of various diagnostic tests only” (Relative no. 3). These statements show that some doctors are very casual about revealing the diagnosis and treatment facilities.
The way of revealing the diagnosis to the patients as well as to the relatives makes an impression about the treating doctor. The trusting relationship between patient and doctor may get disrupted from patient and relatives side by these casual statements.
Interest of patient to know the diagnosis
In most of the cases, the patient was eager to know about the diagnosis. But, they knew very little or were given very less information at first by the relatives or by the caregiver. When the patient came to a cancer hospital, he definitely wanted to know – “He knew very little about his disease before. He did not ask for it also until he was admitted in the cancer hospital. Initially, he was silent but after one day or so he asked what his diagnosis was? I didn't tell the diagnosis but said that the best doctors were treating him and he would be alright” (Relative no. 11).
Relative no. 2 informed that “As the patient being well educated he showed his kin interest in knowing the disease status and hence he used to go through the prescription and the reports. After he came to know about the diagnosis, he was speechless and was in depression.”
“Yes, the patient knows about the diagnosis. He was informed by his doctor as he was always cautious of his health and curious to know”– informed Relative no. 9.
In some situations, the patient asked for the diagnosis, the doctor concerned informed the family member first and later informed the patient. “Yes the patient showed eagerness in knowing her diagnosis. The doctor with consent from the family members informed the patient about her disease condition. Right after she came to know about her condition, she was filled with grief. But as the time passes, she adjusted herself with the disease condition and wants to fight with the disease”– (Relative 4).
Some of the patients were informed by the relatives about their disease, when asked by the patient. Initially, they were very afraid of the situation. The patient was also coped alongside – “Patient showed her willingness about knowing the disease/diagnosis. She was informed by her son about the diagnosis. After knowing the disease condition, she was shocked and was afraid of it. But the relative counseled her that the treatment of cancer in modern days had improved and after treatment she would get well soon” (Relative no. 8).
When the patient is educated and knowledgeable, they usually search for the diagnosis by themselves – be it in internet, medicines, and therapy given or by designation of the doctor treating. “My patient being well educated and with keen interest regarding his ailment, he found it out from the prescription and the therapy given” (Relative no. 12).
Relative no. 13 narrated “My mom was eager to know about the diagnosis and the disease condition. Therefore, she was informed about the reports of all the investigations done. The reaction was of course surprising but very positive. She wanted to fight the cancer and win the battle”.
“As the patient wanted to know about diagnosis, our family members explained him” (Relative no. 1). According to the relative (son), he believes that his patient is completely aware of the disease prognosis as he is a school teacher and hence he explained his father regarding the nature of treatment associated with it now.
In some situations, the relative did not want to give the bad news fearing that might lead to depression. They did not inform because the willingness of the patient to live was very high and they did not want to dishearten her by letting know the incurable status of her disease (Relative no. 3).
Other relatives (Nos. 6 and 14) informed that patient would be mentally stressed and ultimately lose hope of life, if they disclose the diagnosis. So, they hide it from him despite he wanted to know the diagnosis.
Some relatives think that giving false information about the disease is necessary to help the patient keep mentally strong – “She wanted to know the diagnosis but I said that her disease was not grave, and it should be cured with treatment. It might take some time though” (Relative no. 5). Another relative (No. 10) informed her patient, it to be a mere stomach problem when she wanted to know.
Our overall result showed that – 14 (93.3%) patients were eager to know the diagnosis and among them 9 (60%) were informed.
Views of patients' relatives about breaking bad news
Most of the relatives of the patient expressed that BBN should not be done to the patient, who is already in a very stressful and painful phases of their life. They were of the opinion that BBN to the patient might hamper their physical as well as mental state which may deteriorates the physical status of the patient in short or long term. Relative Nos. 14 and No 6 are of this opinion. Relative No. 14 also expressed that they would say it is merely a stomach problem rather than cancer even if he asks for it.
According to the Relative No. 3, BBN should not be done –“In order not to increase the mental stress of the patient, as she might start harming her mental state by over thinking her days of longetivity.”
As per Relative No. 15 – “It's okay to talk to the patient about the disease that she is going through, but if it is in the last stage, I would prefer not to tell her that it will not get cured in this stage. I would prefer that she stays happily till her last date.” The same expressed by Relative no. 9 – “In my opinion, BBN about disease is okay, but about disease status is not necessary.” A difference in the thoughts and opinions has been felt among the relatives. Relative No. 13 says, “Generally when a disease is incurable, a patient should definitely need to be told as it is the patient who will undergo all treatment and tests. Without the acknowledgement of the patient, I do not think it is ethical to move on with the treatment. After all, a positive mind always heals half of the disease.”
A very positive and noteworthy attitude was being observed by the relative (Relative No. 1) of one of our patient who was admitted to our hospital. Among all the attendants, the son expressed a very significant thought. He expresses that “The patient should be told about their diagnosis/incurability states. But the thing is that the patient should be told slowly, step by step, and not directly because some people cannot bear such bad news. It is better to make him aware about his incurable disease. It is better to make him face the bitter truth of life than to give him false hope of life.”
At the same time, some apprehensions also expressed by relatives, whether the patient would be able to accept it or not. Relative No. 5 expressed – “BBN to patient should be individually specific. If we know that the patient will be able to accept the truth, then the news should be given to the patient.” According to the brother of a young patient (Relative no. 14) – “BBN should not be done.”
Most of the relatives of the patient, who report to the outpatient department, stated that BBN to the patient entirely depends on the psychological state of the patient. According to the level of understanding and how much wants to know, BBN should be done in a very subtle and simple way that will minimally alter the positive attitude toward the curability of the disease.
Some of the relatives expressed that BBN to patient, can bring out a positive change as well. It might depress the patient for the time being. But gradually, it might bring out a positive attitude in the patient and he/she might be able to cope up with the situation and move forward with a challenging attitude. It would also help the patient in making strong decision as to continue with curative treatment. Apart from this, it would enable the patient/sufferer to carry out all the undone responsibilities and duties of his life and family, which need to be fulfilled, before taking final leave from this world.
| Discussion | | |
According to medical ethics – patient autonomy comes the forefront in patient care. It means every patient has the right to know what is happening in his body and has the right to choose treatment. This principle should be followed with the background of respect for life.[1] At the same time, patients are also not bound legally to accept the recommended treatment. They can still choose the treatment which will be best suited to his physical, psychological, social and financial conditions.[9]
In Western Europe, the USA, and Australia where people lives mostly in solitary families, doctors follow the same principle of autonomy for patient.[4] But, in Eastern Europe and Asian countries, relatives come to know the diagnosis first and these relatives ask the doctor not to reveal the diagnosis to patient as the patient may not be able to bear it.[6] This may be due to the good will and love for their dear ones. Thus they want to protect him from psychological breakdown.[18] They want him to be brave enough to go ahead with the treatment and overcome the side effects associated with the therapy with ease. Because, the fighting spirit of patient helps overcoming the difficulties that one faces. If the person comes to know about the disease and disease status, it is likely to cause him depressed first and lead to withdrawn from the treatment and finally giving up. These views are expressed by almost all of the relatives.
Moreover, truth telling should be central to communication between patients and their doctors and is related to the socio-cultural aspects of the patient. The relationship between patients and doctors was initially centered by what the doctors judged the best available medical treatment in their patients' interest.[19]
The collusion between doctor or caregiver and patient's relatives may worsen, if the doctor insists to inform the patient and ignore the relative's concern. If the doctor and relatives decide to hide the true facts from the patient – patient gradually becomes isolated. The family members will have to tell lies to hide the true facts. One lie will lead to another lie. Ultimately, they have to stay away from patient fearing disclosure of the truth at a time when they have to care for the patient 24 h a day.[1] This will lead to family disruption and poor standard of care to the patient. This situation can be avoided if the patient is consulted about the diagnosis and disease status at the beginning. The doctor needs to develop a good rapport with the patient so as to avoid this situation and also with the relatives for proper care of the patient. To overcome collusion, the doctor needs to discuss with the relatives about the pros and cons of the BBN and allow time to make a choice congenial for BBN.[1],[11]
If we don't disclose the information, then patient won't be able to understand the gravity of the situation. They will be uncertain about the future course of actions for them. This uncertainty would be worse when the patient come to know about the bad news suddenly in the near future.[20]
In our study, it is seen that 5 (33.3%) relatives wanted to give complete information to the patient. On the contrary, only 3 (20%) of relatives wanted to disclose it in part – mostly the diagnosis only, not about disease status. And 7 (47.7%) relatives did not want to disclose at all which they stated, purely to protect the patient from mental breakdown.
A total of 53.3% of relatives wanted to disclose the diagnosis in our study which can be considered as a better sign as in comparison to study of Fainsinger[7] where 89% of relatives did not want a full disclosure in Spain.
Any illness has objective and subjective aspects. There are interactions between the affected individual, the family and relatives, the doctor, social factors during the course of the disease. Together, all these contribute to the vibrant nature of the patient's illness.[21]
In 1998, Groopman elaborated in his book that more than one-quarter of patients are not told about incurability status of their disease, and more than one-third patients thought that palliative regimens are curative and one quarter of patients are not told about the side-effects of treatments.[22] Most of the patients feel that they have not got all the information and many patients fail to ask the questions to clarify.[23] But, both doctors and patients, should be open and considerate to change, particularly the communication skills have to be learned by doctors in dealing with this type of patients and patients also should dare to ask the questions directly.[23]
Most of the patients usually want to have all the information. A study conducted by Jenkins et al. concluded that 87% of patients wanted all information.[24] Our study shows that 93.3% of patients want to know the diagnosis, but only 60% have been informed about it. This may be due to physician factors. Doctors did not want to disclose the diagnosis as the patient did not ask specifically or the relatives asked the doctor not to disclose.[22] Interest varies from patient to patient, depending on their knowledge and age. Information as of their health condition should be passed on skillfully and honestly stepwise enabling them to assimilate without any concern.[23]
The present day preference for truth telling stems from the respect for autonomy. Individual patient's rights should be taken into account while discussing and BBN. This implies that every individual should be given the right to be able to make his or her own decisions and actions harmoniously and in co-operation with other family members, so as to avoid any form of collusion among the members of own family.[25]
Every patient has the tendency to get proper information about the diagnosis and prognosis of his illness. Informing patient about his illness, disclosure of bad news, therapeutic options and prognosis is the legal and professional duty of doctors.[25]
It is the prime duty of the physician to keep in mind that patient education given in small chunks. Giving all the information at once may make the patient get overwhelmed and not be able to absorb all of it. For this purpose the physician/health care provider (HCP) may schedule revisits and convey information in a language which they can understand, and avoid medical jargons.[26]
The skills needed to communicate well with patients are not complex enough and can be learned by doctors to make a significant difference to quality of life in both patients and professionals. Conversely, poor communication can lead to increased stress for professionals and distress for patients and relatives.
The data in our study showed some apprehension by the relatives in relation to the way and the timing of BBN. I think from the literatures we have discussed above, it is a matter of convincing the relatives to pursue for BBN with discussion. In normal process of BBN, all the apprehensions of relatives are usually taken care. So, relatives are to be counseled and convinced first to avoid the collusion with doctors. Then only more number of patients will get the information they want and subsequently it will add to the quality of life improvement of patient.
Collusion serves to isolate the patient, produces psychosocial stress on patient and relatives, causes family to disrupt, and all these all lead to poor standard of care.[3] The relatives sometimes think and argue that they know the patient better than the HCP regarding what the patient can perceive. They also argue that revealing the diagnosis may take away hopes from the patient and the family. But, data from research show that awareness of diagnosis do not have a negative influence on emotion or reality of life.[2] Rather withholding the truth and giving false reality prohibit the patient from doing the practical needs of the patient and family and denies them to achieve what they wanted most. Collusion also results in heightening the feeling of guilt, fear, anxiety, depression and also conflicts between patient and carers.
Patients' aspirations and hopes may remain elusive totally. Therefore, it is essential to assess the presence of collusion at the first consultation and try to disengage from it as far as possible. It is usually avoidable at first, if doctors consult the patients first before the relatives.[2] But, in most situations, it does not happen. It is important to talk to the relatives first to clear their doubts before proceeding for BBN. Relatives should acknowledge that BBN is important for the patient caring. Then after BBN should be done to patient.
Relatives' permission must be taken to talk to the patient alone and assurance should be given that physician will not disclose the diagnosis unless the patient asks a direct question.
It is only to assess how much the patient knows and how much he wants to know. It is also important to seek permission from patient to convey his awareness to the relatives. Finally the patient and relatives should be consulted together to share information and to offer support. At the same time setting realistic goals for the patients and relatives for future is important.[3] Breaking the collusion between doctor and relatives is important to start the process of BBN. Because without the help of relatives, it may be impossible to care for the patient.
Having cancer is a life-changing experience for both the patient and family. In such a situation, society plays an important role while dealing with cancer patients. Society comprises different group of people. In a country like India, excepting a few, most of the people have stigma about cancer. Whenever someone is diagnosed to have cancer, people related to the patients are reluctant to speak about the diagnosis and isolate themselves from others. But, patients with cancer generally experience enhanced need for social support.
Although sophisticated and specific treatment is available now, people taking negative images and myths about cancer is still around. The stigmas reduce the life opportunities in patients, which results in social isolation, decrease emotional well being. In the contrary, positive perception toward the disease may also boost up the positive energy of the patient.
BBN to patient depends on the educational level of the people and the customs of the society.[7] But at the same time patients concerns must also be addressed about the diagnosis, prognosis and other aspects of the disease. But, in such an ideal situation, BBN is not supposed to happen because the patient and relatives are aware of the situation.[7] Where as in a society where people are not open minded and with no knowledge of the disease, they supposed that occurrence of the disease is unfortunate and BBN to the patient may be fatal for the patient and may bring problem and emotional despair to the patient and their near and dear ones.
Apart from that, some people in the society also believe that cancer is a communicable disease. Cancer meaning for such people is a frightening situation. They have a natural tendency to avoid the truth. So, BBN is somewhat impossible in such a situation.
The societal attitude toward this disease is sometimes primitive. Apart from believing it to be contagious, some people think it to be punishment from God for their misdeeds, in the previous life. When the disease is diagnosed a number of questions come to the mind of the patient. They might wonder – did it happen for my fault, how shall I react, what will happen to me. Therefore the first care/treatment that can be given to a patient is psychological support. This support is to be given not only by the doctor, psychologists but by the society as a whole – family members, relatives, friends, neighbors, colleagues, villagers etc.
But, there are also people who consider the disease as a normal process, which may affect any person, irrespective of caste, creed, deed, gender, belief etc.
Every specialty of medical science at some point experiences the need for BBN to the patients. Effective communication of the sadness in stressful situations needs preparation for the HCPs. Breaking of bad news though unpleasant, it is indispensible for caring the patient but it is not an easy task.
| Conclusion | | |
The data presented here give a challenging picture faced by HCPs in delivering palliative care to the patients with life-limiting illnesses. Almost all patients expect truth be told, but their interest is suppressed by unrealistic and unethical attitudes of relatives, though it is protective in nature; leading to collusion between HCPs and relatives. If this collusion is allowed to persist for longer period, it may lead to confusion, distress, and resentment among patients, hampering patient–doctor relationships.
Apprehensions on the part of relatives are quite natural. However, conveying all the information to patients is necessary not only for continuous, uninterrupted treatments and care but also to sustain the doctor–patient relationships. The trust between doctors and patients is strengthened by honesty and clarity in statements. This should not be disrupted by collusion of doctors with relatives. Relatives should be assured that letting the patients know about the diagnosis will actually empower them to plan for their future treatments.
Good communication is essential for comprehensive and holistic patient care. Relatives and patients are to be involved in patient care, cannot be ignored rather need empowerment. Communications training among HCPs can significantly improve quality supportive care for the patients as well as relatives.
Acknowledgment
The Hospital-Based Cancer Registry and Department of Cancer Registry at Dr B Borooah Cancer Institute. The Hospital-Based Cancer Registry is a Task Force project under the Indian Council of Medical Research.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]
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