In the week that has passed one thing has dominated my conversation and consideration – care home visiting. On Monday the Cabinet Secretary published Guidance which amongst other things extended the potential of outdoor visiting to include up to 6 people, indoor visiting was enhanced to enable the possibility of physical touch (with PPE), longer visits (up to four hours) and involvement in activity with residents. In addition, there was permission given to allow children, pets, and hairdressers into care homes.

In the hours and days after the announcement I have held and heard many conversations with individual family members, providers, managers and staff. The conversations have sharply illustrated the degree of disagreement both about the visiting guidance but indeed about the risks and opportunities around visiting altogether.

I am writing on this subject this week to partly reflect the variety of views but also to attempt to identify steps that might be taken in the weeks ahead to give greater reassurance, and most critically to argue that unless we all of us work collectively over the next few weeks then the winter we are about to face will be a very dark one indeed.

There can be no doubt about a point of overwhelming agreement and consensus – namely that everyone involved in care homes both recognises the importance of restoring a more normal and natural family and resident relationship, and that there is growing evidence of the physical, emotional and psychological harm that is resulting from the enforced and extensive separation that has occurred over the last seven months. There can also be little grounds to dispute the knowledge that the risks of Coronavirus upon those who are our very old, frail and elderly are immense and considerable. No one wants to see a return to the devastation which brought such heartache and sadness to all our lives in the spring and early summer. But there are also points of real tension beyond agreement.

I have heard this week from providers, care home managers and staff who are deeply concerned and very fearful indeed about the measures which were announced on Monday. The grounds for their concern are numerous but chiefly they feel that the timing of the announcement and the start of increased visiting is miscalculated. They argue that at a time when cases of the virus are increasing in the community, when hospitals are beginning to fill up and when large parts of society are facing increased restrictions in order to protect, then this is not the time to extend visiting and increase the risk of transmission from the community into care homes. They further argue that the safeguards which we have been operating over the summer months are now at a state of real fragility, this is especially the case with care home testing where the experience of many is that delays in the UK Portal mean that some staff are having to wait for test results for a period of up to and beyond a week. They express further concern that without the testing of visitors that there will be real harm to residents from the risk of asymptomatic individuals coming into the care homes. They state that they have a duty of care not just to individual residents but to all residents and staff. They have also highlighted the huge pressure extending visiting places upon already stretched and exhausted care staff and managers at a time when they should be focussing on keeping people alive.

In addition, I have heard from family members who have written and spoken to me who are alarmed at the extension of visiting and see this as posing a risk to their family members. They have stated that they are the silent majority who are either happy with the level of visiting as it exists or simply fear for the extensions on similar grounds to those I have already mentioned. I know of families where some visit and others refuse to do so.

Then there are other voices, and I have spoken directly to many including representatives of the Care Home Relatives Scotland Group who I met alongside some providers and managers on Thursday evening. They have long campaigned for a normalisation of visiting and have broadly welcomed the new enhanced Guidance. Their case is simple, that it is a human right for an individual to be able to be with their family; that care homes are not prisons and that we have to respect and listen to the desires and will of those who are residents. They point to the research evidence from SAGE and others that the risk of transmission of the virus into care homes is very low, almost absent, with the appropriate use of PPE and certainly lower than other associated risks. They point to research which shows the level of deterioration and decline being experienced by care home residents devoid of contact and encouragement, presence and family love – they point out that no matter how good the quality of paid care is in a care home it can never replicate the love and touch of husband and wife, son and daughter and family in general.

I think it is important to state that everyone involved in this discussion and debate is starting from a point of real sincerity and desire to protect, keep safe and enhance the quality of life of residents in our care homes. The way that is to be achieved are the points of disagreement.

Even though the First Minister has made clear that guidance will not be mandated it is critical we work collectively together to move issues forward. I do not think this is the best place to go into the various individual elements of some of the debate, but I do think there are several actions which can be taken to improve things on the ground.

Firstly, we need to get to a working Covid testing system as a matter of urgency, one that can give as much assurance as possible to staff working in care homes. The current UK system is not working and the sooner there can be transfer to a robust NHS Scotland system the better.

Secondly, we need to develop a mechanism which will enable family members to either become part of the standard staffing testing system or much more desirable to introduce either in every care home or on a local community basis a rapid testing system that would enable them to be tested and get their results quickly, recognising their critical role in the care and support of their relatives.

Thirdly, the Scottish Government and COSLA need to make very clear that additional costs which result from enabling visiting to happen will be speedily met so that providers of all sizes are able to be sustained.

Fourth, we should collectively work to develop a system whereby the sheer managing of visiting (in these current circumstances) becomes the focus of one individual in each care home, whether volunteer or not, because we cannot over-burden existing staff who are already tired, exhausted and focussed on keeping life going and maximising health and wellbeing.

Fifthly, it is time to develop a National Care Home Visiting Action Plan and Statement where we bring together all the diverse voices and commit to how we will move forward into the spring. This is as important an area as any of the other realms of winter planning and will itself be no doubt impacted by other threats such as the growth of seasonal respiratory conditions, the flu and Brexit fall-out.

Sixthly, we need a degree of consistency around decisions taken by Public Health officials over when visiting is restricted due to community transmission. Explicitly we need all of us to know not only when this happens but also why. So why is it in some parts of the country that even window visits are being restricted but in other parts they are allowed? Why do we exclude visiting for 28 days in instances that a staff member tests positive and is not at work? This seems disproportionate and risks closure to visits becoming a rolling reality for some homes.

Seven, it is increasingly clear that we need more localism in the implementation of decisions. We need to find a better balance that avoids blanket positions being adopted and which enables individual care homes in specific parts of the country to work together with their stakeholders and family members to take decisions locally which reflect the risks in the local area. We are losing the ability to trust our care professionals.

Eight, as was shown in an open letter from some of our leading Infection Practice and Control experts in yesterday’s Nursing Times, we have to urgently develop a way of understanding infection practice in our care homes which is not simply the adoption of what works in acute health settings. Care homes and their residents are not equivalent or the same as hospital wards and their patients. One is an institutional setting, a care home is not; it is a home of friends and companions, who interact, mingle and mix. As we move into winter the ‘IPC fundamentalism’ which has been adopted around infection control practices needs to be replaced by an understanding of the imperatives of infection prevention which work for a different context.

Lastly, we must all of us get better at communicating and consulting. There will be many times when decisions have to be taken which are hard and challenging. It is especially important at such times that all involved both understand reasons and feel involved in the taking of these decisions, where it is possible to be so involved. It is equally important that when any new future Guidance is developed and issued that those most impacted are the first and not the last to know.

At the heart of all the debate and discussion I have held in the last week, one thing has continually struck me, and that is the need for us all to work together. At a time at which wider society is obscenely chattering about the possibility of segregating the old and most at risk, in some pretence of humanity, it is incumbent on all who are committed and concerned about care in care homes and in the wider community, to be united rather than divided.

It is not always easy to see the perspective of the other, especially when the urgency of action, the desire to protect, the passionate need to be present with loved ones, the fear of failure and blame, the terror of the virus, dominates our thoughts, But we can achieve very little without working alongside others.

The next few weeks and months will be ones of challenge for all who care. The nights are already growing longer and the evening sets earlier with each day. I have always been more at ease in the draughts of winter than the rays of a summer sun, but one thing I have discovered is that you cannot rest for long in winter, you have to keep moving on to the hope which spring beckons, bringing a new start and new beginnings. We cannot simply settle content with the ways things are at the moment – we need to work together to make sure contact with family is enhanced and safety of residents is deepened.

One of the poems I read this week is an old favourite. It is ‘Stopping By The Woods on a Snowy Evening’ and is one of Robert Frost’s earlier poems. It describes the woods as a place of beautiful silence and peace, but it is also a place that exists alongside danger, stress and activity, amidst obligation and responsibility. For me it is a reminder that we all have promises to keep, not just to keep going, but to be better, to restore, and to re-build. That is the essence of care wherever it is delivered. We cannot stand still in the winter peace – we have to move forward. “I have promises to keep, And miles to go before I sleep.”

As we move into winter it is critical beyond the obvious to state that we must find ways of being open in our dialogue, working together and making sure that we maximise the protection of folks from the virus but at the same time increase the alongsideness of family presence. I believe we can do this but not in our own defensive and reactive siloes. We owe it to those we love to work together with a responsiveness and mutual regard which is at the centre of all good care.

“Whose woods these are I think I know.

His house is in the village though;

He will not see me stopping here

To watch his woods fill up with snow.

 

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

 

He gives his harness bells a shake

To ask if there is some mistake.

The only other sound’s the sweep

Of easy wind and downy flake.

 

The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

Robert Frost

 

Donald Macaskill

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”.

Japanese Maple

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

Donald Macaskill