Highlands and Islands MSPs back improved end-of-life and palliative care

Highlands and Islands Labour MSPs, David Stewart and Rhoda Grant, are backing calls for improved end-of-life and palliative care as new research shows that by 2040, 95% of people who die in Scotland may need additional support in their care.

Charity Marie Curie Scotland says another 60,000 people are projected to be dying with a terminal condition by 2040 – with an increase in people dying in the community rather than hospital – and has urged end of life care to be made a priority for the Scottish Government with a new national strategy.  This is being backed by Scottish Labour.

Mr Stewart and Mrs Grant have previously called for end of life care to be at the top of the political agenda as 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. Marie Curie, in an opinion poll of Scots, highlighted that 61% would prefer to die at home.

Mr Stewart, who is also Labour’s Shadow Public Health Minister, held his cross-party member’s debate on the ‘Right to Full Care to Die at Home’ in the Scottish Parliament last year.

The debate was prompted 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.

Mr Stewart 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.

“A new national strategy is desperately needed,” said Mr Stewart.

“What we have learnt from the pandemic is that end-of-life care is extremely important to families and carers as they struggle with lockdown restrictions and limits to hospital and care home visiting.

“It would be a huge relief to many GPs across Scotland that when someone says they want to die at home they know for sure they can get the compassionate care to back up the palliative care that is provided.”

Mrs Grant added: “A national strategy will help ensure that those living with and dying from terminal illness will get the support they need to live as comfortably as they can with the time they have left.

“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.”

Dr Bowie said: “I am incredibly grateful to the Scottish Parliament for discussing this, and for the cross-party support. Indeed, when days are few they are precious.

“As a Highlands and Islands GP I want to be able to care for my patients at home in their last few days. But that doesn’t always happen as my patient may have wished, because we don’t have the necessary care at home, or nurses.

“At the moment we can be born at home, even though we can’t decide that. Our parents can, and the midwives have to help, as it’s the law. You have a right to have a baby at home, no matter the risk, and the state must provide a midwife.

“But there are no such rights for death.

“There is much talk about people having the choice to die at home, in palliative care strategies, both national and local. However, when it comes to death 60% of folk in Scotland want to be able to die in their own beds, with their loved ones in attendance.

“If, however, home care or district nurses decide they don’t have the means to support it, it forces people ‘at the last’ to be taken off to care centres or hospitals against their wishes, if the relatives are unable to manage entirely on their own.

“Sometimes relatives caring for a dying person at home just need a few nights help to care, or even just a few hours, or just help with the dignity of personal care. Help to make their loved one comfortable. Homecare don’t have to provide that help. It’s up to the Integration Joint Boards, and whilst they don’t have to provide, then many won’t. It’s all wrong and the only way we can sort this is legislation, so that councils and Health Boards will make it happen.”