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Living well, dying well

Manju, a palliative care nurse in Nepal, sits with a patient. Photo by Gary Brough, EMMS International

Church Mission Society people in mission are pioneering palliative care in Nepal and DR Congo, writes Jo Mitchell

A flask of hot water, a mattress to lie on and a neighbour’s company: these small provisions brought comfort to K in the last days of her life and showed her that she was not alone or unloved.

An elderly widow in DR Congo, K’s cancer was in its final stage and she spent day after day by herself, while her daughter worked at the local market to support her struggling family. Lying for long hours on a thin mat on the ground, she developed crippling bed sores and was unable even to make herself a drink. Members of the diocese of Aru medical services palliative care team found simple, inexpensive but effective ways of reducing K’s pain and loneliness by giving her a flask and a mattress, treating her sores, explaining how to minimise them and finding a kind neighbour willing to visit a few times a day.

Where resources are scarce, healthcare provision often – understandably – focuses on meeting immediate and urgent needs. Medical staff are trained to diagnose, treat and effect a cure wherever possible. But the unavoidable truth is that everyone will come to the end of life, to a point where we can’t be made better.

How people live in those final years, months or days matters deeply to Dr Francesca Elloway and Dr Dan Munday of Church Mission Society. These two doctors are pioneering new approaches to palliative care in DRC and Nepal respectively, where there is currently little provision. They are focusing their efforts, in Dan’s words, not simply on “enabling people to die free from pain… but enabling people to live well, even though their life expectancy may be short.”

Palliative care: relatively new in Nepal

Phillipa and Dan Munday in Nepal
Phillipa and Dan Munday in Kathmandu, where Dan is a conultant on palliative care

While the concept of palliative care was first introduced in Nepal in 2000, few people in the country are specially trained to provide it, and only one centre provides palliative care in the whole of rural Nepal. The needs in remote rural areas are huge, particularly in the aftermath of the devastating 2015 earthquake. On a recent assessment trip, a six-hour bus ride and a further six-hour trek brought Dan’s team to an isolated community where they learned that the younger generation had left for work in cities or overseas and those who remained were old, frail, and vulnerable with very little access to any health care, and certainly no palliative care.

In order to establish and embed palliative care across Nepal, Dan and his team (in conjunction with International Nepal Fellowship) worked to provide training, challenge current levels of provision and demonstrate good, culturallyrelevant practice. “It is important not to impose a Western model of palliative care in a country like Nepal – it won’t work,” Dan says. “In the UK it is the patient’s right to make decisions about who else knows about their illness and is involved in their care; the technical term is ‘autonomy’.”

Because Nepalese families tend to be much more involved in patients’ lives than in the UK, an intentionally three-way model has been developed, with communication that includes clinician, patient and family.

The team’s approach is both grassroots and strategic. Their vision is that not only medical staff should receive training, but also local people who live in the community alongside those in need of care; over 60 women who are members of local churches recently gathered in Pokhara for a two-day workshop in caring and listening skills. At the same time, Dan, who worked in palliative care for 15 years in the UK prior to moving to Nepal four years ago, is also working with Nepali colleagues to write a national strategy for palliative care in Nepal. The Nepal Association of Palliative Care (NAPCare) recently handed the strategy over to the ministry of health for final approval and an implementation plan is now being developed.

NAPCare will now be engaging with the ministry of health and other groups to get the strategy adopted into health service policy. Palliative care not only helps alleviate suffering, it also serves to introduce new approaches to care – to ways of listening and giving patients and their families a voice – which can be life changing. A baby born without an oesophagus was recently referred to Manju BK, who is receiving training to become a specialist palliative care nurse, based at Tansen mission hospital. The parents had been told their baby needed surgery in Kathmandu and, as they felt unable to take her, she was referred for palliative care. Manju took time to speak with the parents and listen to their concerns. As a result, they felt empowered to take her to Kathmandu, where she received surgery and now has a very good chance of survival. Manju recently spoke at the Nepal Christian Medical and Dental Association and Hospital Christian Fellowship joint conference, and is at the forefront of work to pioneer palliative care in her country.

Dan comments: “We believe that palliative care is not only important in its own right, but is a vehicle for demonstrating and teaching a really patient-centred approach to healthcare.”

Developments in DR Congo

As for DR Congo, palliative care is almost unknown outside the capital, Kinshasa. Given the level of poverty and hardship so many already live with, patients with a terminal condition often feel a burden, ending their lives simply waiting for death at home in great discomfort.

This is further compounded by cultural beliefs which make prioritising the needs of a palliative care patient a challenge. Francesca says, “There is the big challenge of people’s expectations and the need to ‘do something’…. Medical personnel feel they need to be seen to be doing all they can to cure the patient…and close family members and friends need to do something to help them feel that they are helping their loved one and also so that they are not criticised after the death and accused of not doing all they could.”

Rev Madhira speaking in a radio studio
Rev Madhira, Francesca Elloway's colleague, promotes palliative care on the radio in DR Congo

Furthermore, the power and influence of traditional healers and medicine remains strong. T, a young man with advanced rectal cancer, was being cared for by Dr Francesca Elloway’s team. Believing that the illness was caused by his uncle’s rape of his mother years before, his relatives decided to bring T and both sides of his family together to resolve the issue. They then removed him from the palliative team’s care and took him to a traditional healer. Fortunately, they brought him back for a blood transfusion, and the team was able to provide some comfort to him in his last days. But when a seriously ill patient can be removed from care and told that his pain is the result of a crime committed by someone else decades before, the issues to be resolved to ensure good palliative care are clearly deep-rooted and complex.

Choosing to stay

After close to two decades of working as community health coordinator in DR Congo, Francesca had been planning her return to the UK, gradually handing over the running of the programme to Congolese colleagues and doing some distance learning training in palliative care.

It became clear, however, that God had different ideas, as she explains: “Particularly amazing guidance came from my colleague, Rev Madhira, who used to be a nurse but subsequently trained as a pastor. He had never heard of palliative care but when I explained it to him his reaction was, ‘I’m sure this is what the Lord has been preparing me to do, it uses my medical and pastoral skills!’ He has become my right hand man in this work.”

Dr Francesca Elloway in DRC
Choosing to stay in remote north-east DRC, Dr Francesca Elloway.

She is now bringing all her experience, energy and expertise to bear on establishing palliative care in DR Congo and beyond. Her focus is both close to home: running a home-based palliative care service in the diocese of Aru, and far-reaching: working with Hospice Africa Uganda which provides training to medical personnel from Francophone African countries. There is a real thirst for training on the subject; a hospital chaplain based 600km away, for example, was passing through Aru when he heard one of Francesca’s radio broadcasts. He came to visit the team and stayed to take part in a seminar, keen to take literature and resources back to his hospital.

In the future, Francesca hopes to see the Congolese church playing a key role in providing pain-relieving, lifeaffirming palliative care, with a dedicated group in each church giving patients practical, emotional and spiritual support, and reinforcing the value of each person’s life, however long it may be. “Palliative care fits in extremely well with the holistic mission of the church: caring for the whole person. It is also a wonderful way in which the church can show God’s love to...people [who] have often been marginalised by society.”

Physical and spiritual care

Palliative care embraces every aspect of a person’s life, and it can be a privilege to give spiritual support to someone as they transition from their life on earth. F has terminal liver failure, and has been receiving palliative care from the team in Aru for the last few months. He had begun a conversation with a pastor about being baptised, but when his condition deteriorated sharply, the first request he made to the carers who came to visit him was to be baptised. This was quickly arranged, and F’s first words afterwards were, “Now I am healed.” While physically far from well, his highest priority was to feel spiritually ready to die, secure in the knowledge that he would be with God. Showing someone in pain, who feels unseen and excluded by their illness, that they are valued and caredfor is a concept that is gaining traction in these contexts.

Palliative care is a gift to a person walking a hard journey, and a powerful way of expressing the limitless love and presence of God. Dan has not forgotten the thoughts an Indian pastor once shared with him on the role of palliative care:

“It’s not merely a way of being able to speak to people about the gospel. It is the gospel.”

The Call in Action: Pray

  1. Pray for for the inclusion of palliative care in all nursing and medical training in DR Congo.
  2. Pray for God to prepare those doctors, nurses, physiotherapists and occupational therapists he is calling to – and within – Nepal to help people to live well at the end of their lives

 

Jo Mitchell is a freelance writer at www.nightingale.ink