Ethics statement

Ethical approval for this study was provided by the Human Research Ethics Committee at the University of Western Australia (RA/4/20/4990) and the Research Ethics Board of Health in Bhutan (REBH/Approval/2018/097). A formal written consent was obtained from the participants in the form of signature.

Study design and setting

This is a descriptive qualitative study. Focus group discussions and in-depth interviews were conducted among healthcare professionals working in health facilities across the country. The study sites included the national referral hospital in the capital city, Thimphu; the two regional referral hospitals located in the east and central Bhutan, four district hospitals, two community hospitals, two primary health centres (PHCs) and the main traditional hospital in Thimphu.

Study population and sampling

Participants were recruited through purposeful sampling stratified by categories to ensure a heterogeneous distribution across health and medical disciplines.

Data collection

Data collection was undertaken between May and August 2019 by author TDL, a Bhutanese registered nurse and lecturer with experience in palliative care. Eligible healthcare professionals were approached with permission from each hospital executive. Interested participants were requested to read the information form and their participation was confirmed with a written consent.

All focus group discussions were conducted within the facility premises in afternoons as this was a quieter time for clinicians. In two of the study sites there was only one eligible participant for whom in-depth interviews were conducted. The duration for focus group discussions and interviews ranged from 32.18–95.14 minutes with an average of 65.17 minutes.

All the focus group discussions and interviews were conducted by TDL using a semi-structured guide (Table 1) which was developed following review of relevant literature, discussions and consensus among authors. TDL directed questions and moderated the discussions. Most discussions were in English although there was occasional use of Dzongkha, the national language, and other local dialects. TDL, who has experiences working in some of these study sites, is fluent in these languages.

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Table 1. A guide to focus group discussions and interviews.

https://doi.org/10.1371/journal.pgph.0000775.t001

Achieving data saturation was not considered because immediate data transcription and analysis was not possible within the limited duration of field work where TDL was simultaneously collecting the qualitative and quantitative data among patients with advanced illness and their families for the broader research program. A purposive sampling strategy was used to recruit participants for interviews and focus group discussions—conducted in all the study sites, at all levels of healthcare across the country. Each focus group discussion and interview was audio recorded with prior consent from the participants. Field notes were maintained to record experiences and contextual realities. Data analysis

TDL listened to each recorded discussion several times and then transcribed verbatim. Where local dialects were used, careful translation was done prior to transcribing in English. For rigor and trustworthiness, recordings, especially involving local dialects, were cross checked with the transcripts by Bhutanese health/academic colleagues and, where necessary, corrections were made. The transcripts were entered into a qualitative data analysis software, NVivo, version 12. The steps for thematic analysis described by Braun and Clarke were used [24, 25]. Each transcript was read several times to fully understand the data. A line-by-line coding was generated to identify and interpret the patterns of themes. The identified themes were then reviewed to check if they matched the codes and data set. The themes were then named and relevant quotes were included against each theme [24]. Field notes were used to relate the contextual realities of each focus group discussion and interview. All co-authors read the transcripts, discussed and reached final consensus on the themes that were generated.

1. Government support for suitable policies

Participants emphasized the critical need for government and policymakers to be involved, including development of policies to enable integration of palliative care into the health system.

One thing is that we need to have policy in place. Please make sure that this really gets to the policymakers because we know that due to better healthcare our lifespan is increasing but NCDs [non-communicable diseases] are [simultaneously] increasing as well. So palliative care is very important. (Physiotherapist, P49).

This care [palliative care] is going to be intensive, time consuming, and the financial aspect is also going to be a big burden. So [the] Ministry of Health should really be made aware and committed to initiate palliative care for the benefit of our patients. (Specialist, P5).

While some participants suggested palliative care should be a separate program in the Ministry of Health, others recommended that it should be associated with the cancer control program.

First and foremost, we need to have a dedicated cancer program in the Ministry of Health and then palliative care should come as a major player in there. (Specialist, P7).

Some participants also highlighted that palliative care should reach to ‘the grassroots level’ (Nurse, P27), referring to the need to include rural communities.

Others emphasized the need for suitable palliative care guidelines.

We do not have clear guidelines for [a] systematic way of caring for [palliative care] patients. So, if you could come up with some real evidence based guidelines. (General Doctor, P12).

2. Education, training and advocacy

Most participants expressed the need for palliative care education, training and advocacy for everyone including healthcare professionals, policymakers and the general public.

Palliative care, being relatively new, we have to sensitise our people. [Even] most of the health workers do not have an idea about what palliative care is all about. We should target health workers, general public and policymakers. (Specialist, P7).

This theme is further divided into two sub-themes: (i) Education and training for healthcare professionals; and (ii) Public awareness and advocacy.

3. Availability and accessibility of essential palliative care medicines

This theme is further divided into two sub-themes: (i) availability of medicines; and (ii) opioid regulation.

4. Workforce and infrastructure

Participants had mixed opinions on the adequacy of workforce and infrastructure if palliative care is to be initiated. Some participants expressed that they have adequate infrastructure and staff but need training. Others identified a need for additional core medical and nursing staff as well as allied health professionals to provide palliative care.

Palliative care patients are chronically ill, bed ridden and dying who need constant support and monitoring. That demands a lot of time. At the moment, since we have shortage of staff including doctors and nurses in this hospital, it will be quite a challenge. (General Doctor, P9).

I don’t think we have enough counsellors who can talk to the patients [and] give them emotional support. (Specialist, P3).

Some participants identified a lack of physical facilities to provide adequate palliative care.

In our hospital settings there is no separate doctor’s room [in the ward]. We have to break bad news in the public places [general ward] where all other patients and families will hear. This is not only like a bad experience for me, but it can be disturbing even to other patients. (General Doctor, P14)

We definitely need more air mattresses to prevent pressure sore, a proper hospital bed where we can raise the head end and the foot end. Then we also need heaters for winters and air conditions [sic] for summers. (Nurse, P32).

Some participants reported that limited infrastructure within hospitals led to challenges especially in fulfilling patients’ wishes. They often had to deny patients’ requests due to safety concerns.

Some patients, at the end-of-life, prefer to do religious rituals [which often involve lighting butter lamps and incense sticks] in the hospital. They seek our permission, but we have to be cautious because in a setting like ours where cancer patients and pneumonia patients [on oxygen] are all kept together and it can be dangerous. (General Doctor, P10).

At the national referral hospital, however, participants reported that the new dialysis centre (under construction) was expected to improve the quality of life of many patients with renal failure and their families.

At the moment, patients requiring dialysis, cancer patients and even others are all kept in that single guest house. Once the new dialysis centre becomes functional there will be enough rooms for [renal] patients and their families. Other thing is we will have extra number of [dialysis] machines and we will be able to give adequate doses of dialysis, at least three times a week. (Specialist, P8).

Some participants also highlighted that, if palliative and end-of-life care were to be provided in PHCs, the need for continuous oxygen supply and the provision for food may be necessary which was not available at that time.

5. Need for interdisciplinary palliative care team

Most participants discussed that palliative care provision needs to be an interdisciplinary team approach. Participants recognized that at least one palliative care specialist is needed to lead the team.

In future we definitely need a palliative care specialist and [with him/her] there should be nurses who are trained in palliative care, nutritionists, physiotherapists, counsellors, psychologists, social workers, volunteers. (Home palliative care group member, P16).

Participants across disciplines highlighted their roles in palliative care-each had something to offer as part of a multidisciplinary team.

We have a bigger role to play in making them [patients] more comfortable. (Nurse, P31).

As pharmacists, we have a major role in palliative care. (Pharmacist, P44).

I see that our role in palliative care is crucial. (Physiotherapist, P50).

When we are ill it is the mind that we need to take care of. We can help to take care of the mind through counselling. (Drungtsho, P59).

Participants discussed the important role that traditional medicine could play in palliative care, especially in improving the psychological and spiritual wellbeing of patients and their families.

Our people have huge faith in traditional medicine. We know that psychological component is very important in palliative care, especially when they are at a terminal stage. (Specialist, P7).

I think it is a good idea to involve Drungtshos in palliative care as they can give psychological and spiritual healing and many patients get satisfied. (General Doctor, P13)

Drungtshos reported that although they do not have medications to treat severe pain there are several traditional practices to heal the patients with advanced illness.

We have spa, massage-the traditional massage, and we have herbal bath, acupuncture and very soon we are coming up with yoga and meditation. All these are psychological and spiritual healing practices. So, it can add to the holistic approach which can benefit the patients. We just need to collaborate. (Drungtsho, P55).

Traditional medicine is so much to deal with our mind and the spirituality of the person. In palliative care, our focus is not just the physical therapy but even the internal healing and that’s why I feel those therapies like the yoga, massaging, and meditation will all be effective in palliative care. (Drungtsho, P61).

While some Drungtshos clarified that traditional medicine need not be religion-based, others treated their chronic patients from a Buddhist perspective.

Sowa Rigpa [local term for traditional medicine] is the art and science of healing. So, there is nothing to do with religion. But in Bhutan we [often] contextualise traditional medicine as a Buddhist medicine. If we are to provide palliative care, we can always relate it to the science of healing. (Drungtsho, P59).

In traditional medicine we categorise 104 diseases, including cancers and other chronic diseases, as a result of one’s past Karma [principle of cause and effect]. So, we first emphasize on accumulating merit (tsho sa gop), then ask them [patients] to have faith and take refuge in the Kenchosum (the three jewels-Buddha, Dharma and Sangha) and we ask them to recite Sangay Menlha’s (Buddha of Medicine’s) mantra. They may not be able to prostrate but we ask them to make offerings and to rely on the Kenchosum more than ever before. (Drungtsho, P60).

6. Socially, culturally and spiritually appropriate palliative care

Participants emphasized that palliative care in Bhutan should be realistic to the Bhutanese context. Having read the participant information form, many of them appreciated that the bigger research program (for which this paper is one of the components) is aimed at developing a socially, culturally and spiritually appropriate palliative care model for Bhutan.

We cannot bring in palliative care ideas of a developed country like Singapore or US and apply here because our culture is different, our religion is different and people’s expectations are different with lot of cultural influences. I am very happy about the topic. Your project is on making palliative care from a Bhutanese perspective which means you are going to basically customize palliative care to our own setting which is very good. All of us believe that palliative care has to be customized. (Specialist, P7).

If you can keep in mind our cultural background, our religious background and our society, I feel palliative care will be successful in Bhutan. (Pharmacist, P46).

Participants reported huge socio-economic burden for patients and families with advanced illness and discussed that palliative care should address it.

The economic burden adds so much on to the patient’s suffering. If that socio-economic factor can be reflected strongly in your model there may be lots of ways to tackle, like tying up with some donor agencies, and it can be really helpful. (Specialist, P7).

Participants also identified the importance of facilitating religious and spiritual practices while caring for terminally ill patients.

Spirituality has a big role when patients are dying. Palliative care must support spiritual practices. (General Doctor, P10).

Those dying patients seem to have peace if they have Lamas [Buddhist master] around to perform some prayers for them. (Nurse, P23).

However, participants also reported that at times they faced challenges balancing between health and cultural/ religious beliefs. They were concerned about misleading local beliefs where patients were often victimised.

The patient was in severe pain and I just wanted to relieve that pain. But then they [family members] believed that injecting the medicine is against the religion and will kill the patient. So, they didn’t let me inject the painkiller. (Health Assistant, P53)

I have recently seen a patient who has stopped his diabetic medication for three months and all of a sudden his sugar level went so high. When asked he said he is taking Orien’s medicine. This is a serious concern. (Pharmacist, P44).

Nevertheless, participants reiterated that palliative care in Bhutan should be unique to its socio-cultural and spiritual context.

Strengths and limitations

The strength of the study is having included participants from all levels of healthcare across the country which provided opportunities to discuss palliative care at different facilities. Some of the participants had not even heard of palliative care although they had been caring for patients with advanced illness and at end-of-life. The study also helped in understanding the infrastructure and human resource realities in these facilities. However, there are also limitations to this study. Participant selection bias was inevitable because in some facilities there was just one eligible participant. For example, district hospitals had just one physiotherapist, pharmacist and Drungtsho and they had to be recruited by default. Similarly, at the time of study, there was only one eligible participant in one of the community hospitals and PHCs. Although some interested healthcare professionals could not participate due to their busy schedule, given the distribution of the study sites throughout the country and the diverse disciplines, the participants in this study do represent the healthcare fraternity of Bhutan.