I thank parliamentary colleagues from across the political divide for signing my motion and for supporting this evening’s important debate. I am also grateful for the live streaming of the debate by BBC “Holyrood Live”.
Last weekend, I read a moving review of a book by a palliative care doctor describing her work. The author, Rachel Clarke, said that, a century ago, 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.”
Being able to die at home is, in my view, a basic human right that accords with the European convention on human rights. A recent opinion poll of Scots by Marie Curie highlighted that 61 per cent would prefer to die at home. Research also by Marie Curie, with the University of Edinburgh and King’s College London, concluded that, if current trends of where people die continue, by 2040 two thirds of all Scots could die at home, in a care home or in a hospice. Currently, less than half do.
However, that is very unlikely to happen without substantial investment in community-based care, including care home capacity. Without that investment, hospital deaths could rise to around 57 per cent of all deaths by 2040.
I have been working closely with a Shetland general practitioner, Susan Bowie, who recently raised with me her concern about the gap in hospital-at-home care for patients. I have received similar reports from other concerned front-line practitioners from across my Highlands and Islands region.
Shetland currently has no charities or carers providing hospital-at-home care. Other areas are in the same position, especially rural and remote areas, according to GPs who have made contact with me. One explained that
“people no longer expect to die at home, and choose the community hospital because they are afraid of the lack of support at home. We do occasionally achieve a well-supported death at home, but usually because of extraordinary family commitment.”
Another GP wrote:
“Patients are unable to die at home, even when they wish to do so, because of the lack of availability of care; it seems the resource for supporting this has been designed out of the system.”
Dr Bowie told me that, previously, when someone wanted to die at home, she was able to organise voluntary help for families who were caring for their relatives, because children often find it difficult to take care of their parents’ personal needs. A list of trained people would be available to help occasionally, if required, and to give relatives a break. However, that service in Shetland was closed years ago. Social care could not fill the gap, so there is very little care available in the evenings, at night or at weekends.
Dr Bowie said:
“We want to be in our most secure of places, our own bed, attended on by loved ones. Unless Health Boards and social care are forced to do this by legislation, they may chose not to provide this kind of service, and so home care services for the dying in Scotland are patchy at best.”
Around 10,000 people die in the Highlands and Islands each year; of those, around 7,700 have palliative care needs. In the statistics about people who die in a community setting, it has to be remembered that “at home” is not necessarily the person’s own home; it could be a care home or a hospice.
However, there are challenges around capturing such information. No national and systematic data is recorded on a person’s preferred place of care at the end of life, and the measure is
“Percentage of last six months of life spent at home or in a community setting”.
It has become apparent to me that there is no set-down definition of what constitutes community care, but it appears to describe everywhere that is not a national health service hospital.
The issue has long interested me. It has fundamental public health implications for Scotland. Parliament has rightly been praised for its legacy policies 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.
In the previous session of the Westminster Parliament, Lord Warner sponsored a private member’s bill on a right to die at home, so I believe that there is a movement towards this approach across England and Wales. In a recent debate on a motion in the name of Miles Briggs, I was grateful to the Minister for Public Health, Sport and Wellbeing, Joe FitzPatrick, for saying that the Government would consider enshrining in law the right to die in a community setting.
We need to shift the balance to ensure that more carers and nurses are trained and available to support people who wish to die at home, and to ensure that those carers are better paid for the valuable job that they do.
Currently, parents have the right to have their child born at home. The national health service provides midwives for that, but people do not have the right to carers to enable them to die at home. I see a policy gap there.
Dr Susan Bowie told me:
“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 if folk have caring relatives who are willing to help, relatives can become exhausted and need a break, and it can end up that the dying person ends up in a hospice, care home or even a hospital because we can't access enough care to allow this.
It would be a huge relief to me, and many other GPs across Scotland, that when someone says they want to die at home we know for sure we can get the compassionate care to back up the palliative care we could provide.”
The right to die at home is, as the Sue Ryder charity has said, about embedding human rights into end-of-life care. It is realistic medicine in practice. It is about a person’s right to express a preference and change their mind if circumstances change.
The Scottish Government’s strategy on palliative care will be complete next year so, surely, now is our chance to put end-of-life care at the top of the agenda.
As President John F Kennedy said,
“Change is the law of life. And those who look only to the past and present are certain to miss the future.”
17:21