As I settle into my annual break in my other home, on the British Channel Island of Jersey, I have found myself obliged to consider the somewhat depressing topic of human mortality.
Within the space of seven days, two friends have had people close to them pass away, while a third person has been tackling the re-opening of wounds caused by the second anniversary of her mother’s death.
In all three cases, these were not unexpected events. The drawing near of the departure was known to all, even though the eventual date could be not predicted.
One of the three chose Jersey’s General Hospital as the place for her passing. The other two, of widely differing backgrounds, opted for Jersey Hospice Care. Founded a few decades ago, JHC is a charity, dedicated both to the offering of in-patient end-of-life care and to the provision of palliative care for those suffering from a variety of life-limiting conditions, but who are still able to stay at home.
It’s a challenging task for a variety of reasons. First, there are the needs of the patients themselves, not simply physical but also emotional. It’s not just a matter of relieving pain, but helping them to deal with their health condition, whether terminal or slowly progressing. Families, friends and carers may struggle to adapt to the changes and limitations imposed by illness. JHC’s Community Bereavement Service provides counselling and support not only to those who are dying but also to those who are facing bereavement or who have been bereaved.
In its early years, Jersey Hospice Care limited its activities primarily to those suffering from cancer and motor neurone disease, but now it cares for patients with multiple sclerosis, Parkinson's disease, heart failure and other conditions. Under the terms of an agreement reached in 2014 with Jersey's government, it provides a leadership and education role in end-of-life care for all healthcare providers across the island.
The challenge for JHC grows year-by-year, primarily because advances in medical knowledge have meant that people live longer, even with conditions that would previously have brought their lives to an end much sooner.
The scope of hospice activity is too broad to explain here, but JHC is primarily funded by the private sector, through charity shops, donations, legacies and a variety of other means. In 2017, less than 10 per cent of income came from government, to support JHC’s island-wide leadership and education role. Around 80 per cent of the people who work in various ways for JHC are volunteers.
I have taken the time to explain in some detail how Jersey Hospice Care works, partly because it’s an institution that delivers a magnificent service, and because I have personal reasons to be grateful to them. It also provides, I believe, a model that we in the Emirates should examine and, perhaps, seek to emulate.
The scale of the challenge is, of course, very different – Jersey has a population of a little over 100,000, a little less than one per cent of the UAE. There are big differences in culture and demographics. Most Jersey residents will be part of small families. Many people in the UAE live within large extended families, yet many foreign workers live as single people, with little in the way of a personal support network.
It’s widely known, however, that the UAE is a long way from attaining the standards of palliative healthcare and end-of-life care that have been set by the World Health Organisation. There is much that needs to be done.
Is there not, for example, scope for the creation of a network of proper hospices in the UAE, places where the provision of conditions to enhance quality of life and then to facilitate dignity in dying is the key objective, rather than undertaking every possible medical step to extend life?
For those coming to the end of their days, do our healthcare services, whether governmental or private, have enough trained people who can explain what is happening, simply, calmly and accessibly? For many, religious faith alone, however deeply held, is just not enough to allay their natural fears.
What steps are being taken to train nursing staff in the specialised techniques required, or to train counsellors to help those who are dying and those facing bereavement?
Is there sufficient support available for people who are not able to enjoy their lives to the full because of debilitating illness, yet may have many years of life ahead of them?
Do we have sufficient centres that can offer support to those, family members perhaps, who care for the sick, day in, day out, without rest and respite?
There are, of course, financial issues to be resolved in tackling these issues. There are no easy answers to those questions.
Might I suggest that the giants of the UAE’s healthcare industry, whether government or private, could take a look at the way in which my little home island of Jersey, and Jersey Hospice Care, have set out to tackle this issue. Perhaps there are some lessons that we could learn.
Peter Hellyer is a consultant specialising in the UAE’s history and culture
