This study found that majority (80%) of respondents would like a healthcare professional to discuss end-of-life care in case of terminal illness with them. This finding accords with both Clayton et al13 and Belanger et al14 arguments for physicians to routinely initiate such discussions and provide time for the patient with terminal illness and family to discuss about end-of-life care. Healthcare professionals were themselves more likely to desire end-of-life care discussion, compared with general population. This may be due to readiness to accept medical information as they are more accustomed to it but it also suggests an implicit acknowledgement of the importance of these conversations.
4.1 Healthcare professional-related factors
Our findings concur with Keating et al,15 who investigated the responses of physicians presented with a hypothetical situation of newly diagnosed metastatic cancer In common with this study, we found that most health care professionals expressed a preference to discuss prognosis primarily at the time of diagnosis (52% in our study; 65% in Keating et al and secondarily when initiated by the patient (29% in our study; 15% in Keating et al). . Furthermore, Keating et al15 found that younger physicians indicated they would be more open to discussing end of life and initiating these conversation earlier in the disease trajectory compared with their older counterparts. The majority of healthcare professional in our study were early and mid-career physicians, which may contribute to their apparent eagerness towards initiating and discussing end of life issues. Whether more senior physicians have the similar preferences is open for further exploration. Ang et al16 also describe differences between age groups among Singaporeans regarding regarding end of life care preferences. This study of Singaporeans comprised of mostly young adults and is therefore similar to our study population. , Thus we suggest that age is a factor to be considered in further research regarding end of life discussions.
It must be acknowledged that our findings relate to a situation abstracted from authentic practice. In real situations, the evidence is that physicians do not regularly initiate the end of life discussions until late in the course of an illness. Huskamp et al 17 studied patients with metastatic lung cancer and found that most had no discussion about end of life care within 4-7 months of diagnosis, despite the poor prognosis of 5%-24% for 5 year survival attached to this diagnosis. Another study among heart failure patients also noted that more than half of physicians feel hesitant to mention end-of-life care or perceived that patients were not ready to talk about the issue.18 Indeed, only 12% of physicians reported they undertake routine, annual end of life care discussions with their heart failure patients, as as advocated by American Heart Association,19 suggesting that clinicians’ reluctant to discuss end of life with patients is independent of diagnosis. We found the preference for end of life discussion at diagnosis was higher in the general population compared with health care professionals (68% vs 52%), further affirming clinicians’ hesitancy to engage in these conversations in early course of disease.
4.2 Patient-related factors
The risk of a patient’s mental capacity deteriorates as their disease progresses, thus conducting end of life discussions in timely manner is important. Time of initiation of these encounters also affects the potential benefit to the patient in terms of planning care, setting goals, maintaining autonomy and managing expectations and increasing patient and carer satisfaction .Furthermore, avoiding futile treatments protects patients from harm, respects their dignity and saves resources to the wider healthcare economy. 20 Conversely, late discussion and late referral to hospice is associated with poorer patient quality of life and worse bereavement adjustment. This study adds to the body of evidence recommending initiation of end of life discussions in early course of disease, by demonstrating a preference for this within the general population of Indonesia . We accord with Wright et al 21 who conclude that physician reluctance exceeds their patient’s readiness to discuss the topic early in their disease trajectory.
4.3 Initiating discussions
Regarding personnel to initiate discussion, both the general population and health care provider groups wished for their doctor to initiate the discussion Our study found the overwhelming majority of respondents from both groups preferred a doctor to instigate the dialogue. A study by Davison22 among patients with end stage renal failure undergoing dialysis found that participants clearly believed physicians were responsible for initiating and guiding advance care planning , as they are seen as primary source of information. Their observation that some participants would accept a nurse or social worker to commence discussion was not confirmed in our study, although Davison includes the caveate that professionals other than doctors were acceptable provided they were involved in the patient’s care and the conversation was relevant.
A systematic review by Adams et al 23 demonstrated strong evidence for the role of nurses in actively brokering information among family members and the health care team for decision making concerning end of life. Indeed the American Nursing Association also stress the importance of Nurse role in advocating patient rights regarding preferences, including in end of life. 24 We therefore argue for further research to assess physician and family member’s perception of the nurses’ role in end of lifediscussion, and to better understand physician’s real experiences regarding nurse participation.
4.4 Information sharing
Our study, concurring with Leydon et al 25 found that although most people would like to know about diagnosis , fewer wanted information regarding prognosis. Furthermore, we observed a similar difference between preference for knowledge about diagnosis compared with prognosis in both study populations (15% difference in healthcare professionals; 18% in general population).
According to Walczak, 26 doctors arereluctant to discuss life expectancy for fear of destroying hope and causing death anxiety and doctors and patients may collude to avoid this discussion. In contrast, Krawczyk and Gallagher 27 found that by eliciting suspicion of false hope and using confusing euphemisms, prognostic uncertainty may harm the doctor-patient relationship, especially when incongruence between doctor’s message and the aggressiveness of care provided is perceived. In retrospective, family member reported that effective communication was related to prognostic information as it helps them to prepare and satisfaction of care was higher. We recommend further exploration of this area of information needs and preferences, in order to improve professionals’ confidence in leading conversations about end of life care.
Nevertheless, our study found that the majority of respondents would wish to know about their prognosis adding evidence to the recommendation that physicians initiate intitiating dialogue about end of life early in the disease trajectory, tailoring the amount of information to the patient concerned and as part of an ongoing plan of care involving patient and their family. However in view of the variable depth of information that individuals may be capable of processing in such discussions, physicians must skillfully assess each patient’s wish regarding depth of information.
This study also reports preferences forrelated parties to be informed about and involved in end-of-life discussions. Most participants would like their spouse or parent to know about their diagnosis of terminal illness and life expectancy, and a bigger portion of health care professionals wish to include their offspring compared with the general population (51% v 35%). This was an unexpected finding and further research into the role of offspring in discussions about the end of their parent’s life is warranted.
We observed positive acceptance towards end-of-life care discussion in terminal illness, refuting the negative assumption among Indonesian people regarding communication of death and dying.11 Considering that reluctance to talk about end-of-life still exists among physicians, the evidence of this study would hopefuly help to give confidence to healthcare professionals to initiate end-of-life care related discussion earlier in course of disease to achieve better goals of care. The questionnaire used in this study is the first set of end-of-life care related questions tailored to local Indonesian cultural and language setting, and may serve as practical base for further development in this field.