Friday, January 31, 2020

"When days are few, life is very precious..."

I wanted to record what happened at Holyrood on Wednesday, 29 January,  just after five o'clock, because I fear nobody else will. 

It was a crucial debate which showed, at least in part, the Scottish Parliament at its best. But Brexit and the prospect of a Scottish independence referendum left the debate little noticed. 

The Scottish Government is promoting a “Shetland solution” to the issues raised as the blueprint for the whole of Scotland. It has allowed the Shetland Integration Joint Board, which is supposed to oversee aspects of health and social care in the isles, to come up with a response to this debate which seems questionable in both accuracy and practicality. 

(Pictures from Scottish Parliament TV. The whole debate is archived there and I urge you to watch it in full)

"When days are few, life is very precious..."

It had been a busy afternoon at the parliament. The small matter of a second referendum on  independence for Scotland was finally, after some huffing and puffing amendments, voted through. At which point the press, most of the public and a large majority of the MSPs departed to ponder, pontificate and have a pint or several of creme de menthe or whatever was on special offer in the members’ bar..

It was the 29th of January, 2020. Brexit was two days away. Shetland was in comatose recovery after Up Helly Aa. But in the blond-oak and cinema-foyer-carpet of Holyrood’s virtually empty debating chamber, the fever of partisan politics ebbed away. At about ten past five David Stewart rose to speak. The Labour Party’s Shadow Public Health Secretary, this was his motion but it had gained cross-party support. 

For the next 45 minutes, quietly, soberly, but with deep eddies of emotion swirling around the chamber, The Scottish Parliament dealt with death in a way that made our august representative body more meaningful, more relevant and, for the most part, more in touch with the realities of Scottish life than I have seen in many years. Even with just a dozen or so folk in the chamber.

At least, it seemed so to me. But then, death and dying - other people’s deaths, other folks’ dying -  are part of my life , as someone who spends a large chunk of time conducting funerals. And this bill had been promoted and pushed indefatigably by my wife, Susan Bowie, once the youngest qualified GP in Scotland and now one of the oldest still practising. My son Magnus was among the two members of the public watching from the gallery. So I was, and remain biased.

This is how the official minute reported what happened:

10. Right to Full Care to Die at Home: The Parliament debated S5M-19252 in the
name of David Stewart—That the Parliament understands that 70% of the population in Scotland wish to die at home; notes that many Highlands and Islands-based GPs are trained in palliative care that can support those who wish to die at home; believes however that not all areas of the region have charities or carers who provide “hospital at home care”, especially overnight, and notes the calls for there to be an automatic right for people to have full care at home day or night for their last few days of life, so that then can have their wish fulfilled by being able to die at home with suitable palliative care.

The meeting closed at 5.52 pm

But that doesn’t come near to capturing the quiet passion of what took place. Throughout there was a sense of heartbreak, a real commitment to care and anguish at its lack. One phrase continues to reverberate in my memory. It came from Labour MSP Rhoda Grant, who pointed out that the right to die at home was really about the right to live at home. “When days are few,” she said, “life is very precious”

Only right at the end, with health minister Joe Fitzpatrick’s declaration that a strategy and action plan had been signed off by the Government and by the Shetland Integration Joint Board, the uneasy social care-meets-health combo where the local council fights with NHS Shetland over unresolvable budgets, did things unravel. I have been a member of said IJB, and the idea that it is setting the course of end-of-life care for all Scotland seems, frankly, peculiar. 

Anyway. Back to Holyrood.
David Stewart

David Stewart began by quoting palliative care doctor Rachel Clarke. Once it was the case, she had written, we departed the world as we entered it, “among our families, close up and personal. Wreathed not in hospital sheets, but in the intimacy of our own home.” To be able to die at home, said Mr Stewart, “is a basic human right.” A lack of support meant that many people at the end of their lives, especially in the Highlands and Islands, were dying in hospital when what they wanted was to be at home. Investment in services to enable them to do so was lacking. And he quoted Dr Susan Bowie: “We want to be in our own most secure places, in our own beds, attended by loved ones. Unless health boards and social care are forced to do this by legislation, they may choose not provide this. And so home care services for the dying in Scotland are patchy at best.”

Mr Stewart went on to point out that parents had the right to choose to have their children at home, but the right to die at home was not enshrined in law. There was a clear policy gap, and he again quoted yon Dr Bowie person: “I almost dread someone asking to die at home at the minute, because we struggle to find the compassionate, round the clock care they need for the last few days of their lives.” Even close and caring relatives could not meet these needs alone. Mr Stewart called on the Scottish Government to include end of life right to die at home and the provision of care to do so in its palliative care strategy. He was warmly applauded, which is a Holyrood thing. None of that Westminster bellowing and stamping and throwing of order papers.

SNP Western Isles MSP Alasdair Allan spoke next, supporting Mr Stewart. While death was a taboo subject these days, that had not been the case in the past. Scottish literature was full of descriptions of families having “unabashed family arguments, in front of and in some cases including elderly relatives about the future catering arrangements which the family thinks adequate for that person’s funeral.”  Oven bannocks only! No crisps! Make sure you hide the good single malt and only serve that Aldi blended stuff! Or perhaps I imagined that.

It was, Mr Allan continued, crucial for the parliament to break this modern taboo. Seventy per cent of people he said, would choose to die at home. But in 2017/18, only 25 per cent of Scots did actually die at home. The Highlands and Islands threw up particular challenges both in the recruitment of care workers and the distances they had to travel. 

Beatrice Wishart, Shetland Liberal Democrat MSP and thus my own and Susan’s representative at Holyrood, then spoke. I have to admit that this was the first time I’ve ever heard Beatrice speak on any subject, anywhere. She has been caricatured by Shetland’s own satirist, Dr Jonathan Wills, as the 18th Century saint Beatrice The Silent.  But she spoke well. And clearly. 

 “Death comes to us all,” she said. “And like childbirth, everyone’s experience is different. It’s personal and it’s intimate. I believe that when someone wishes to die at home they should be able to do so. I know of people who have lived all their lives on a small island, but have been flown out in their last few days to hospital, to die.” While they received good hospital care, they were deprived of the support of friends,family and neighbours. Ms Wishart spoke about her own father, legendary newspaper editor and war cameraman Basil Wishart, and about how he had always felt guilt that he had not been able to fulfil his mother’s wish to die at home. She had died in hospital some 40 years ago.

“When his turn came, he died at home. That we were able to care for him at home was only because one of his close friends was a retired nurse, who supported the family through the practicalities of dying, along with a locum GP who administered pain relief. My father remained in good spirits right up to the end. It was a good death. And really that is what this is about, is it not? Ensuring that everyone has a good death, one that is free of fear, pain and suffering.” It also, she said, enabled family and friends to come to terms with the loss of a loved one.
Beatrice Wishart

Rhoda Grant, Highlands and Islands Labour MSP, praised the work of the Marie Curie charity and Macmillan, especially in the field of cancer. It was more likely because of these organisations that people with cancer would have the chance to die at home. Other conditions were not so well supported. Especially dementia. 

Dying at home was of great benefit to families in coming to terms with grief, she said, but the burden of care was sometimes insupportable by the family alone.

“When my father was in his final days it was his desire to be at home. That could not have happened without the support of health and care professionals who made themselves available 24-7. They should not have had to do that. There should have been better backup for them,. But I will be forever grateful that they did it.”

There was something poetic about the way Ms Grant spoke. And everyone watching and listening felt the power of those words: Dying was actually life, and it should be lived to the full as much as possible, in the place that dying person wanted most to be. 

“When time is short, life is very precious.”

Brian Whittle, south of Scotland Conservative member, also spoke movingly about his own relatives. His grandmother, who died in comfort and with excellent care in an Ayrshire hospice. 

“But then I thought about my grandfather, who was then of course living on his own. He was a wonderful gardener - he had this incredible garden in Symington that looked out over the fields, and he loved being there.” Mr Whittle and his father had visited and provided care every day as his grandfather’s dementia accelerated.

“Eventually he had to leave his house and go into a care home, where he ultimately died. What we’re talking about here is this right to be in an environment where you feel at home. The right to die at home. And I’m quite sure that if we could have done that, he’d much rather have been looking out over the garden which he had tended for decades.”

Monica Lennon, Labour, paid tribute to the many nurses, GPs and care workers who strove to provide care to people at the end of their lives, and in particular the Marie Curie organisation.

There was a vital need for investment to allow people to die at home as opposed to in hospital, she said. Everyone was agreed that there was a need for “a rights-based approach with dignified, person centred care at its core,” but there was a clear economic case to be made for encouraging the right to die at home. It was a proven fact, she said, that a community based model of care created efficiency savings, ”because it does reduce the  reliance on acute settings.” A community approach “makes sense on so many levels,” but it required investment on the ground. Voluntary organisations such as Marie Curie did a wonderful job, but they had to raise funds of their own.

Ms Lennon was the last speaker before the Government had its chance to respond, and she concluded with same commitment to cross party unity with which David Stewart had begun proceedings. Investment in palliative care and end of life care was crucial, she said, and she hoped “we can continue to work together to build on this consensus.”

So now what? What could the SNP Government say? What would it promise to do?

It was Public Health Minister Joe Fitzpatrick’s job to respond, thanking David Stewart and clearly moved, voicing his appreciation for the very personal stories that members had told. 

“This is not something I tend to do, and I’m not going to that. But I can say that particularly Rhoda Grant’s speech caused me to remember some close family members that I’ve lost and the circumstances around that. I thank those who have had the courage to share their own experiences.” He also praised Marie Curie for working in partnership with the Scottish Government “They’re amazing. I don’t know what we would do without them.” It was clear, he said “that we all want the same thing. For people to get palliative and end of life care that as far as possible respects their wishes and reflects their individual circumstances.” The Scottish Government had long been committed to “ensuring that everyone in Scotland can live with human dignity...and that includes providing care and support which is dignified and compassionate.”

“We seek to ensure that all individuals are treated with respect and dignity and that the human rights we’re all entitled to are upheld. We have to support a human rights based approach to all care, including end of life care, where dignity, compassion and respect are central to a person’s care and where people’s care wishes are respected as far as possible.”

Mr Fitzpatrick accepted that there were greater challenges in rural communities. But local councils and health boards were working to achieve these aims. 

And so we came circling back to Shetland, where it seemed the Integration Joint Board or IJB had the answers. This came as a considerable surprise to me.

“At the end of last year,” said Mr Fitzpatrick, “ the Shetland  IJB informed the Scottish Government that they’d produced a local palliative care strategy and accompanying action plan to improve the provision of palliative care in Shetland. That was signed off just last week. I’m assuming it’s not yet been published or if it is it’s hot off the press.

 This debate was important to that process, he said. The IJB plan “was not drafted in isolation but rather by frank reflection that there needed to be more options for people when considering what palliative care is right for them, and by listening carefully to the views of clinicians such as Dr Bowie, MSPs, the third sector and most importantly the local communities as to what they want from this service.”

 This could set the pattern for the rest of Scotland: “I guess that’s a blueprint as to how you should go about shaping services that other IJBs might want to look at. There is clearly much work to be done. I look forward to seeing how that plan in Shetland is implemented and progressed. In the future.”

And that was that. As I write, the Shetland IJB palliative care strategy and action plan is indeed hot of the press, so to speak, at least digitally. It’s available on the Shetland Islands Council website here:

What does it say? Well, the agenda summary states it’s not specifically about the right to full care so that folk can choose to die at home. It’s about ‘end of life care’. And as Alasdair Allan pointed out at Holyrood, that covers the last six months of life. In 2018/19, it is proudly asserted by the IJB, Shetland “had a percentage of 94 percent of time in the last six months of life spent at home or in a community setting. This is the highest percentage of anywhere in Scotland, and consistently the highest percentage in Scotland since 2013/14.” 

But this is - how can I put this - bullshit. “A community setting” in this instance can and does mean care home or care centre, not just your own house. And if that missing six per cent is when the person actually died...well. 

The report itself is 40-odd pages long and starts well: Death and dying, whilst a natural part of life, can be one of the most difficult times for everyone involved. Having a good death is just as important as having good quality of life. 

“Whilst dying is inevitable, and universal, that is the only certain thing about it. So much else is unpredictable. It is therefore vital to offer people choice and control over the things that are important to them at this point of maximum vulnerability in their lives."

Then there are pages of graphs, tables statistics and stuff about person-centred care: worthy, possibly worthwhile, but woolly as a flock of unsheared sheep.

Under the title ‘place of death’, that six-month figure is brought out again. There is a great deal of talk about talking, about good communications, about people-centred self-chosen care. About openness and honesty. There are cosy and reassuring, social worky words. But the closest the document gets even to mentioning the right - the RIGHT to die at home, fully supported, is this:

“People, their families and carers (should) have timely and focussed conversations with appropriately skilled professionals to plan their care and support towards the end of life, and to ensure this is in accordance with their needs and preferences.”

This is not ‘the right to full care to die at home’.

And I go back David Stewart’s speech. He said this:

 “Parliament has rightly been praised for its legacy of policies on matters including free personal care, the smoking ban and minimum unit pricing for alcohol. A right to die at home could join that illustrious group of legacy policies that parliamentarians and constituents of the future could look back on with pride.”

A right to die at home. A right to live those final hours, days among your loved ones, in the place you chose. A right to expect the Scottish Government not to palm off decision making on an island IJB, but to take control and reflect the unity of that splendid debate.

A letter from Health Secretary Jean Freeman (Joe Fitzpatrick’s boss) to Rhoda Grant on 26 November 2019 refers to the Shetland IJB strategy  that “is seeking to build on the work of clinicians like Dr Bowie”: 

“One of the actions in the strategy is to extend the current model of on-call nursing to a waking night service using Advanced Nurse Practitioners working alongside care staff to provide support to people in the community. It is envisioned that this will be implemented by July 2020. I understand that the draft Palliative and End of Life Care Strategy is due to be formally agreed and ratified at the Shetland Integration Joint Board meeting on 28th November. I have asked my officials and Shetland IJB to share a copy of the strategy with you on publication. 

“Additionally, Shetland IJB provided reassurance that there are carers and nurses available during the daytime, at weekends and evenings, to provide support and care to people at home with palliative care needs. There is also an on-call overnight nursing service in place to provide support and care outside of working hours.”

Superficially impressive. But speculative fiction. That “reassurance” is, alas, a plucked-from-thin-air theory which has no practical reality. GPs who seek to tap into these services will find and have found it impossible to get the help they need.

Which is where we came in. 

When days are few, life is very precious.