When the story of the pandemic is finally written I hope that one of the chapters in that tome will be the recounting of how as individuals and as a society we have dealt with death and dying. Today is World Hospice and Palliative Care Day which provides an annual opportunity to reflect on the importance and significance of palliative care in societies across the world. Scotland is blessed by having a level of palliative care provision and excellence rarely matched elsewhere, even if we have fallen short of our aim that by 2021 all who need and require palliative care would achieve its easy access. But what can we say of palliative care during the pandemic?
“Without the skill and quiet professionalism of the palliative care nurse none of us would have got through what we have just experienced.”
Those were the words of a care home nurse at the height of the first wave of the pandemic. They mirrored the experience of dozens more. There was and still is a real sense of palliative professionals wrapping their arms of support around social care and health colleagues in care homes across Scotland. Where others talked, they walked in and worked in honest care partnership. It was my privilege to take part in weekly then less frequent virtual calls with palliative care colleagues from across Scotland and I can lay testament to the truth that some of the real unsung heroes of the last few months have been the women and men who work in palliative care and palliative medicine in both our hospitals and in the community. Their lack of recognition is perhaps itself illustrative of the discomfort of wider society in relating to issues of death and dying.
Today is an opportunity to reflect upon the criticality of palliative and end of life care to thousands upon thousands of people across our society. For me personally it underlines the importance of recognising that access to good palliative care should be considered as a fundamental human right in much the same way as we recognise that access to health in general is a human right. Last year I argued this case in a session at the Scottish Parliament stating that the way in which we care for and support those who are dying is as important as the way in which we care for and support those who will go on to recover and live through any illness. I’m not at all convinced we are there yet!
If we are able to prepare for our own death, then we engage upon the most person-centred activity we will ever undertake. Being in the presence of those who are dying teaches us that every death is unique and individual and that the art of such presence is to learn to mould your care to the needs and wishes of the person who is dying. It is to learn the lesson that silence speaks more than sound, that touch teaches more than restraint, that our hearts cradle hope. There is no textbook on the last days and hours of life albeit that we recognise the signs and symptoms of life ebbing away as the body shuts down and breath departs. Every death is unique and the care of those who are dying requires skills of empathy, compassion and alongsideness which are nurtured over many years.
If it is an overstated truism to say that death encourages us to live our lives to the full then it should also be transparent that we all of us need to learn how to die well. Palliative care is not just about the last few moments of breath but the times in which we are supported and cared for in the days, weeks and months before we die.
But of course, as a society we have never really been comfortable with talking about never mind planning for death. Death is always something that happens to someone else and we let it into our head only when the death of those we love, or a person of our own age reminds us of our own fragile mortality.
It is too early to say what the pandemic experience will mean for our collective understanding of death and our ability to be more skilled at living in the face of our own dying. For some undeniably the experience has been one of acute pain where we have been prevented from being at the bedsides of loved ones, have been unable to say goodbye and be present with touch and tear. For some it has been an experience which has robbed them of precious time to spend with others and do all that was planned as they have lived with terminal illness in a world locked down on loving and togetherness.
There are many things we need to learn to do better and differently. There should never be any excuse or reason for denying the presence of family and loved ones (properly protected) in the days before and at the moments of death. There can be no justification for allowing people to die without those they love and want beside them – even with the caring professionalism of strangers beside them – for that is a loneliness we can never end. We have to do better at recognising that end of life care in care home or hospital is not just in the final hours when someone has lost so much of the spark that is their self but, in the days, and weeks before. We have to get better at balancing risk with love, presence with absence, quality of life with quantity of life.
But over all of this the pandemic and its daily echo of mortality as numbers of lives lost etch themselves into our hearts, should also teach us the essential truth of palliative care. We all of us should be better at preparing and planning for our dying and the last days of our living. That is what anticipatory care planning is all about. It is the recognition that if we are able, planning our own death is as important as the plans we make for the birth of new life into the world. Tragically the abuse of Do Not Resuscitate forms and their indiscriminate, ageist application by some during the pandemic, has damaged the concept of planning around dying. But the ground must be recovered because a life which does the work of death before the moment of dying is one that is undeniably more settled and peaceful for both the person and those around them.
I am reminded of this truth whenever I read the words of those who are dying. Now lest anyone accuse me of simplistic naivety I have been around death long enough to know that moments of quietist peace are balanced by times of angry fear and raw rage. Death can be terrible and terrifying in equal measure to its ability to be peaceful and calm. But as possibly one of the most important things we will anyone of us do then we owe it to ourselves and those we love to be prepared.
I have seen over the years that dying can create new life and family restoration, it can bring about healing and forgiveness. Past experiences are seen through a new prism of priority and what truly matters. Dying moments can be our best time, they can gather up the story of our living and loving into a gift of touch and solidarity that nothing can equal. That’s why we owe it to all to be present at times of death. That’s why we owe it to all to give time in the weeks and days before death. Honesty grows slowly in ground which has been fallow but its fruit is a memory whose taste remains forever. That is what good palliative care is all about.
Over the years as I grew up, I came to love the acidic and wise wit of the Australian Clive James. After being diagnosed with leukaemia and emphysema in 2010, James said that his terminal diagnosis led him to “start saying goodbye” through his poetry.
He captured the pain and agony of departure, of planning and preparation in his usual witty style in a poem called Japanese Maple, which is about a tree given to him by his daughter. In it James adores the tree’s soft presence in the back garden of his home, yearning to live until autumn in order to see its leaves “turn to flame”.
Your death, near now, is of an easy sort.
So slow a fading out brings no real pain.
Breath growing short
Is just uncomfortable. You feel the drain
Of energy, but thought and sight remain:
Enhanced, in fact. When did you ever see
So much sweet beauty as when fine rain falls
On that small tree
And saturates your brick back garden walls,
So many Amber Rooms and mirror halls?
Ever more lavish as the dusk descends
This glistening illuminates the air.
It never ends.
Whenever the rain comes it will be there,
Beyond my time, but now I take my share.
My daughter’s choice, the maple tree is new.
Come autumn and its leaves will turn to flame.
What I must do
Is live to see that.That will end the game
For me, though life continues all the same:
Filling the double doors to bathe my eyes,
A final flood of colors will live on
As my mind dies,
Burned by my vision of a world that shone
So brightly at the last, and then was gone.
© Clive James, 2014