Highlands and Islands Labour MSP David Stewart told MSPs today that end of life care should be at the top of the political agenda but home care services for the dying in Scotland were patchy at best.
He highlighted how one GP had told him that resources for supporting care to help patients who wished to die at home seemed to have been “designed out of the system.”
Mr Stewart, who is also Labour’s Shadow Public Health Minister, was speaking in the Scottish Parliament at his cross-party member’s debate on the ‘Right to Full Care to Die at Home’.
The debate was promoted by a plea from Shetland GP Susan Bowie that there should 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.
During the debate Mr Stewart said: “As Susan Bowie told me: “I almost dread someone asking to die at home at the minute because we struggle so much to find the compassionate round -the-clock care they need for the last few days of their lives.
“Even if folk have caring relatives 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 can provide.”
Another GP told Mr Stewart: “.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.”
While another doctor added: “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.”
Mr Stewart said that being able to die at home was a basic human right that accords with the European Convention on Human Rights.
Marie Curie, in a recent opinion poll of Scots, highlighted that 61% would prefer to die at home.
Research by Marie Curie, University of Edinburgh and Kings College London says that if current trends in where people die continues then by 2040 two thirds of all Scots could die at home, in a care home or a hospice. Currently less than half do.
However, it is very unlikely to happen without substantial investment in community-based care including care home capacity. Without this investment hospital deaths could rise to 37,089 (57%) of all deaths by 2040.
Dr Bowie told Mr Stewart, previously, when someone wished to die at home, she was able to organise volunteer help for families in caring for their relatives.
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 continued: “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 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 10,295 people die in the Highlands and Islands each year and of these 7,720 have palliative care need.
Mr Stewart said; “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.”
He also stressed that parents currently have the right to have their child born at home and the national health service provides midwives, but we do not have the right to carers to enable us to die at home. “I see a real policy gap, there,” he said.
“We need to shift the balance so that we not only train more carers and nurses to be available to support people who wish to die at home, but make sure that those carers are better paid for the valuable job that they do,” he said.
Mr Stewart continued: “The right to die at home is, as Sue Ryder charity has said, embedding human rights in end of life care. It is realistic medicine in practice. It is about Right to Express a Preference, and the Right to Change Your Mind if circumstances change. The Scottish Government strategy on palliative care will be complete next year – surely now is our chance to put end of life care at the top of the agenda?”
Labour MSP Rhoda Grant also backed the debate and said: “It is not so much about dying at home it is more about living at home”.
“When days are few they are precious. There is a greater need to live them to the full, to savour and appreciate things around you. That is much better to do at home than in an institution,” she added.
“There is also the greater need to spend time with family and friends, although a terminal illness can make that tiring. Therefore, how much better to be at home, where family and friends can have somewhere to wait until their loved one has the energy to spend some time with them.
“In a hospital that becomes difficult, sitting beside a bed, getting in the way and nothing else to do that just simply sit.”
She praised GPs such as Susan Bowie and carers who give above and beyond to support people to live and die at home.
“I have a constituent whose partner is being forced to give up work to care for him and even at that it would appear he will not get the support he needs to allow him to spend his final days at home,” said Mrs Grant.
“To live these days to the full, he needs to be at home. He desperately wants to be at home and he is being failed.”
Public Health Minister, Joe Fitzpatrick, said that the IJB on Shetland had been looking at out-of-hours palliative care on the islands and had produced a Palliative Care Strategy to improve such care, which had just been was signed off, although it might not yet have been published as it was ‘hot off the press’.