Tuesday, 5 July 2016

Modern rituals.

Life has a lot of rituals. From the way we organise child-birth, to the day we die, our lives are marked in the stage-posts of periodic rituals. My little girl is due to start school in September, and even that has the hallmarks of a ritual. From the care-free playful days of her first four years, she will embark on a routine that starts to embed in her an understanding of the way that our world works. She will make friends (hopefully), she will learn to read and write. She will take exams - one of my favourite rituals of all.

Perhaps I am being too liberal with the word 'ritual'. Our lives are not governed in the way they once were by religion. That is not true everywhere, but here in the UK, religious practice is a matter of personal choice, rather than compulsory observation. Ritual has become secularised, which is not without its pitfalls.

I see evidence of secular ritualism all over the place, from humanist naming ceremonies, to football matches, summer festivals, graduation, even Christmas. Who can still argue that Christmas remains a primarily religious celebration?

I like rituals. They give us context, grounding and perspective. But primarily, they must have purpose. A good ritual allows us to appreciate where we stand in the world, where we have come from, and where we are going. It is a piece of community history, that encapsulates the learning of the past for the benefit of future generations.

Baptisms introduce a new child into their families and communities. Weddings celebrate the bonding of a couple. Funerals organise the grief over a lost friend or relative. It is always good to forge one's own path, but it is also important to understand from whence you came.

Yet, the ebbing away of religious practice from wider communities has left a big gap in how we deal with death. Today, over half of people die in hospital, yet only 8% want to. The majority would prefer to die at home.

At first glance this appears to be a fundamental failure of the health service to adapt appropriately to the needs of the people it serves; but hold your counsel for just a moment. How many of those people who were asked were actively dying at the time they were asked? I suspect not many.

I have supported a great many people in their final days, and done well, it can be a serene and valuable experience. Many of my patients were ready to die, and tired of life. Yet many were understandably scared and lonely. I try to advise families not to keep vigil, but to keep loving in those final days and hours. To talk, to hold hands, to give space and quiet. I have encouraged them to enjoy final lucid moments, to look out for signs of distress that we can help with, but more importantly to talk openly, honestly and candidly about what is happening, and to take a final chance to say the things they won't ever have a chance to say again.

And sometimes, to me, it feels a little absurd that it is I, a physician in his 30s, who is giving advice to families about how to deal with the process of seeing a loved one die. I never really thought I would become an expert in dying, even as a geriatrician, but then again, who else has the chance to become expert?

Patients often come into one of my community hospitals for palliative care, and we are glad to have them. We are pleased to be able to help. The nurses I work with offer the kind of care I wish everyone could have. With a calm, compassionate simplicity, they tend these patients compassionately, and allow the patients and their families to focus on the things that are important to them.

Many of these patients arrive having had a fraught time at home. Often they are desperate to be at home, and their relatives are desperate to support them. But the challenge of meeting the care needs of some very frail relative, often in pain, or with other symptoms can be overwhelming and incredibly stressful. It is also entirely unfamiliar. What is normal when someone is dying? How do you know what to expect?

Many of us, I suspect have never seen someone die, or even seen a dead person. I remember clearly the first time I was present at the very moment of death. You can tell instantly, and you start to understand why we used to believe in a spirit leaving a body, because that is exactly what it looks like.

It used to be the case that many people died young, or the elderly died at home. It used to happen all the time. Within communities, it was something that most people had experienced.
Vestiges of the past still live on through our hospital chaplains, who minister our patients with grace, calm and compassion. It is through our local vicars that some of this community expertise lives on. The double-edge of the success of modern medicine is that these routine occurrences have passed out of the collective experience. End of life care has been outsourced to hospitals, which means that when it does happen at home, it can be a scary experience for all involved, because there is too little access to people who know how it all works.

Much of the comfort that patients and relatives get from dying in one of my community hospitals is from being surrounded by staff who can help them know what to expect; people who will tend to routine care that is important, so that they can enjoy some tender last moments, without the pressure of attending to basic needs.

Perhaps this was a ritual that we used to have the community expertise to do at home. Perhaps it's something that we still have the expertise to do at home. What I know is that for some patients, being cared for in a calm, expert environment that isn't their home, is often the right thing to do.

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