Right to Full Care to Die at Home debate in the Scottish Parliament
A members’ business debate in the name of David Stewart MSP, left, on people’s right to full care support to die at home took place at Holyrood. The Marie Curie charity’s service features large and so we have decided to report all of it. Bill Heaney, Editor, The Democrat.
Motion debated, 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 they can have their wish fulfilled by being able to die at home with suitable palliative care.
- David Stewart (Highlands and Islands) (Lab): 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 choose 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.
Miles Briggs MSP and John Corry, the Tory MSP for Scotland West.
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 Well-being, 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.”
Dr Alasdair Allan (Na h-Eileanan an Iar) (SNP): “I thank David Stewart for securing this debate. It is not an easy issue to discuss, but it is an important one. I welcome the focus that I hope the debate can bring to some issues, not least those that terminally ill people in the Highlands and Islands face.As other members will, no doubt, point out, dying is a taboo today in a way that it was not for earlier generations. Scottish literature is full of accounts of unabashedly matter-of-fact family arguments in front of, or including, elderly relatives about the catering arrangements that their family thinks are adequate for that person’s funeral. Conversations as pragmatic as that would—perhaps not completely without reason—be considered fairly shocking today. However, in Parliament, there is occasionally a good reason to break the modern taboo about dying, because unless we do, as a society, we risk ignoring an issue that is crucial for everyone—including members.
As I suspect we will learn from other speakers, seventy per cent of people would choose to die at home, but it is not always possible for everyone to be cared for at home in their last days. I have not quoted that statistic to detract in any way from the outstanding work that hospices, doctors, nurses, homes for the elderly, charities and many others do to care for people. An example of that work is the enormous commitment that is shown by the Bethesda hospice and other organisations in my constituency. However, the reality is that, given the choice, most people would not choose to spend their last days on a hospital ward for lack of any alternative, although I am sorry to say that that does still happen sometimes. In fact, only 25 per cent of people who died in 2017-18 did so at home.
Some challenges are the same for people everywhere in the country, but some are very definitely different in the Highlands and, in particular, on the islands, where terminally ill people and their relatives face journeys on a totally different magnitude to anywhere else in the country just to meet hospital appointments. In the Highlands and Islands, finding a care package at home is often a difficult task, not because of any lack of willingness from dedicated care workers, but because of the extreme difficulties in recruiting them. Some care workers face 50-mile round trips—and more—in a day.
Although this debate will not, in itself, resolve any of those challenges, it can at least identify them.
Following the completion, in 2021, of the current strategic framework for action on palliative care, I hope that we will start thinking ahead, to the continual improvement that we can make to services beyond that. Part of that challenge—to which I do not claim to have the answer—will certainly be finding new ways to meet the urgent recruitment challenge that now affects many sectors in the Highlands and Islands. Another will be ensuring that everyone who needs palliative care is identified and has a right to express a preference for where they would like to be cared for and to die. Of course, that should include the right to change their mind. I conclude by recognising again the great work that is already happening to make those aims a reality, but also the distance still to be travelled to ensure that everyone is treated in the way that they would hope to be treated.
Beatrice Wishart (Shetland Islands) (LD): I, too, thank David Stewart for bringing this important debate to the chamber. I also thank Dr Susan Bowie, who is one of my constituents, for her work on raising awareness of the realities of palliative care on the islands. She has highlighted the inconsistency in our having the right to be born at home but no right to die there.
Death comes to us all and, as with childbirth, everyone’s experience of it is different: it is personal and intimate. I believe that if a person 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 who, in their last few days, were flown out to hospital to die. They received good hospital care, but were deprived of the presence and loving support of their extended family, friends and neighbours.
I am sure that everyone in the chamber will have a personal story to tell about their experience of the care of loved ones in their last few days, and it is often such personal experiences that shape our thinking. My father felt guilty because he did not fulfil his mother’s wish that she should die at home. Instead, some 40 years ago, she died in hospital. When his turn came, my father died at home. Our being able to care for him at home was possible only because one of his close friends was a retired nurse who supported the family through the practicalities of his dying, along with a locum GP who administered pain relief. My father remained in good spirits up to the end, and his was a good death.
That is what the debate is about, is it not? It is about ensuring that everyone has a good death that is free of pain, fear and suffering, and which helps family and friends to understand and come to terms with the loss of their loved one. The creation of a right to full care at home at the end of life should be fully explored, so I would welcome further debate on the issue.
In the meantime, there are things that we can do now to make improvements to end-of-life care. Lack of data is a real issue. Children’s Hospices Across Scotland estimates that two thirds of the babies, children and young people who die from life-shortening conditions in Scotland each year are unknown to it. I mention that not only to show that families are missing out on care at such a heartbreaking time, but as a reminder that palliative care is not just for the elderly. If we do not have the data, we cannot plan properly for demand and resources.
We are playing catch-up when it comes to end-of-life care. Ideally, we would all get to choose how, when, where and with whom we die. Obviously, though, life does not always afford us that choice. For those of us who have the capacity to choose what death will look like, the choice should never be made for us by constraints on the availability of palliative care.
Rhoda Grant (Highlands and Islands) (Lab): I, too, thank David Stewart for bringing this important debate to the chamber, and I pay tribute to Dr Susan Bowie for raising the issue on behalf of her patients and the wider community.
End-of-life care is not so much about dying at home; it is more about living there. When days are few, they are very precious. There is a greater need to live them to the full and to savour and appreciate the things around us, all of which are much better done at home than in an institution.
There is also a greater need to spend time with family and friends, although terminal illness can make that tiring. How much better is it, therefore, to be at home, where family and friends can have somewhere to wait until their loved one has the energy to spend time with them? That becomes difficult in a hospital, where one sits by a bed, gets in the way and has nothing to do but sit.
The Marie Curie briefing for the debate suggests a number of reasons why people do not die at home. People with cancer are more likely to get that opportunity, and that is down to organisations such as Marie Curie and Macmillan Cancer Support that are associated with cancer and are more likely to be contacted for help and advice by people with cancer. Other terminal conditions, including heart failure, chronic obstructive pulmonary disease and dementia are not so well supported. We need to talk about the end of life in order that we can have the end-of-life care that we wish to have, and people with terminal cancer are more likely to get that support.
I recently attended a conference in the Western Isles about dementia, at which one of the speakers made a huge impression on me. He was living with dementia and wanted to continue to live at home as the condition progressed, and was actively making plans to do that. He was learning about what that progression would mean for him and what he could do to ensure that he could live as independently as possible, by using technology to guide him as his memory failed. People with cancer do, and are helped to do, that type of planning. However, for conditions including dementia, we do not speak about what the end of life will be like, about what is likely to happen, and about how we can plan for it.
The Marie Curie briefing also mentioned “Carer breakdown” as being one of the reasons why people are not able to die at home, and talked about how desperately sad that situation is for people who are affected. To have a loved one die at home and to be able to help in their care really helps with grief. However, a carer cannot continue indefinitely if the whole burden of care is thrust on them, without support. They might not sleep for fear that their loved one will need something, so exhaustion sets in. No one can keep doing that.
The Carers (Scotland) Act 2016 promised carers that they would get support and that they would not be forced to give up work, but those promises are being broken. I have a constituent whose partner has been forced to give up work to care for him. Even in that situation, it appears that he will not get the support that would allow him to spend his final months at home. He needs to be—and desperately wants to be—at home so that he can live those months to the full, but he is being failed.
The Marie Curie briefing says that the situation is worse in remote and rural communities, due to the lack of available support. I believe that to be true, but I also believe that general practitioners such as Susan Bowie and the health and care staff in those communities often give above and beyond to support people to live and die at home.
When my father was in his final days, his desire was to be at home. That could not have happened without the support of the health and care professionals who made themselves available 24/7. They should not have had to do that, and they should have had better back up, but I will be forever grateful that they did it.
We cannot leave such things to chance: we need to put in place plans that allow people to be supported at home and to end their lives where they have lived them.
Brian Whittle (South Scotland) (Con): I thank David Stewart for bringing the debate to the chamber and for giving us the opportunity to discuss this important and difficult topic. Following Miles Briggs’s debate on end-of-life care, we now have the opportunity to revisit the issue and to put it in context.
Rhoda Grant’s speech about her father, who died at home, made me think about my grandmother. I have already mentioned in Parliament that my grandmother died in the Ayrshire Hospice, whose staff looked after her fantastically well. I then thought about my grandfather, who was living on his own. He was a wonderful gardener—a market gardener—and loved being in his incredible garden in Symington, which looked out over the fields.
I was quite lucky, because at that time I was still taking part in sport, so I had time to drop in and check on him every day. I usually dropped in around lunch time to make sure that he was eating properly and whatnot; I would always try to find him in the garden. He contracted accelerated dementia, which Rhoda Grant mentioned. My father, who was self-employed at the time, and I managed to spend a bit of time with him every day. Eventually, he had to leave his home and go into a hospice, or a care home, where he ultimately died.
We are talking about the right of a person to die in an environment where they feel at home. I am sure that, if it had been possible for my grandfather, he would have much preferred to die looking out over the garden that he had tended for decades. I am sure that that would have been his choice but, at the time, the support was not available in the community to help us.
As was said the most recent time we debated the issue, the direction of travel is towards community care, which involves taking services into the community. As the Marie Curie report on the subject highlights, there will be a significant increase in the number of people who will die outside a hospital setting, and we need to consider how we can create a system that will adequately enable that to happen. According to the projections, two thirds of people will die outside a hospital setting. When I read the Marie Curie report, I was struck by the substantial evidence base on terminally ill people who receive support at home, which shows that the existence of community palliative care teams increases the chance of people having the opportunity to die at home and that hospital admissions become more likely when there is insufficient nursing provision available and not enough family carers to deliver that care at home.
We are talking about developing a system that does not yet exist. The care home sector already plays a huge role in the care of people who are in their twilight years, but it is under extreme pressure, as we are all aware. The closure of care homes in our areas is putting the system under greater strain.
There needs to be a fundamental change in how we fund care homes, because the way in which they are used has changed over the years. Decades ago, they were often called granny farms. These days, the people who enter care homes do so later in life and have much more complex health needs. We need to recognise the skill set that care home workers now require to have, which Dave Stewart mentioned. It is much more of a medical intervention that is provided than was ever the case in the past. I have met several operators of care homes that are struggling to stay open. We must look at how they operate and how they are funded and make sure that they have a bit of room for manoeuvre. Given that enabling people to die at home is the direction of travel that we all want to move in, we will have to look at the care home environment much more closely.
Monica Lennon (Central Scotland) (Lab): I congratulate David Stewart on securing this important debate on a topic that I know he feels very strongly about. I support the motion, and I welcome the interest from members across the chamber. It has been moving to hear members pay tribute to Dr Susan Bowie for her dedication to her patients. We are blessed to have so many GPs, nurses and other healthcare professionals in our communities. In particular, I want to thank all the Marie Curie nurses and volunteers for their invaluable work in supporting people who are living with a terminal illness, as well as their families.
Everyone should have the right to express a choice about where they receive care and where they die. Many members have talked about the importance of home as a happy and familiar place, where friends, family and neighbours can gather. Therefore, it is unsurprising to learn that, when they were asked about their end-of-life choices, more than six out of 10 people in Scotland said that they would prefer to die at home. The same YouGov survey indicated that fewer than 10 per cent of people would wish to die in a hospital.
David Stewart made the important case for vital investment, without which we will not be able to meet people’s wishes and, 20 years from now, more people will be dying in hospital. Marie Curie has backed up that view and has given extensive supporting evidence to make the case for substantial investment in community-based care, including in care home capacity.
I think that we all agree that there is a principled case for a rights-based approach with dignified and person-centred care at its core, but there is also an economic dimension. It is encouraging that the Scottish Government is considering enshrining the right to die at home in Scots law. We know about the pressures on our health service, and supporting people in the community with palliative care services has been proven to create efficiency savings, because that reduces reliance on acute settings. Marie Curie has highlighted that its service users are much less likely to use all forms of hospital care, including accident and emergency departments, so investment makes sense on so many levels.
Effervescent Marie Curie patron Petra McMillan who has have raised money on numerous occasions for the end of life charity, but says they still have a mountain to climb when it comes to funding.
Marie Curie knows what it is talking about, having cared for more than 7,500 people in Scotland with a terminal illness last year alone. In my Central Scotland region, that amounted to 568 people, and Marie Curie supported more than 90 per cent of those people to die in their place of choice. There are seven Marie Curie nurses in NHS Forth Valley, and 48 in NHS Lanarkshire. However, with more investment, we can have more specialist nurses, so that more people are able to have their wishes respected.
As someone from Central Scotland, I have found it interesting to hear so many members talk about the unique challenges in the Highlands and Islands. I am sure that the minister will want to pick up on a lot of those points.
In Lanarkshire, where I live, there have been some recent damning Care Inspectorate reports that highlight that some of our care services are in crisis. For example, home care services in Hamilton have been deemed unsafe for service users and care staff. We have some serious challenges to address, and continued cuts to funding will only put councils closer and closer to breaking point.
There are many reasons to be grateful for the vital services that Marie Curie provides, but it needs to fund-raise £15 million a year, which is not easy, so we have to get our priorities right.
I am grateful to David Stewart for lodging the motion. I was not able to be in the chamber for Miles Briggs’s members’ business debate, but it is clear that there is a growing consensus in Parliament. The minister has already given a commitment to look at legislation, and I hope that we can continue to work together and build on that consensus.
The Minister for Public Health, Sport and Wellbeing (Joe FitzPatrick): On behalf of the Scottish Government, I thank David Stewart for lodging his motion, and colleagues across the chamber for their thoughtful contributions. I particularly thank members who have shared their personal experiences. That is not something that I tend to do, and I will not do it today, but I know how difficult that is for folk. Rhoda Grant’s speech caused me to remember close family members I have lost and the circumstances around that. As I said, I am not in a position to talk about that, but I thank members who have had the courage to share their experiences.
I thank Monica Lennon for talking about the fantastic work that Marie Curie does on behalf of us all, working in partnership with the Scottish Government. It is an amazing organisation, and I do not know what we would do without it, so I add my thanks to Marie Curie. Members might recall that I spoke in Miles Briggs’s members’ business debate just a few weeks ago. It was clear from that debate, and it is clear from the speeches today, that we all want the same thing: people to get palliative and end-of-life care that, as far as possible, respects their wishes and reflects their individual circumstances.
As we have heard, a recent YouGov survey that was commissioned by Marie Curie found that 61 per cent of people in Scotland said that they would prefer to die at home. However, according to the most recently available statistics from the Information Services Division, only 25 per cent of people go on to die at home or in a homely setting, so it is important that we take the time to understand why people are not getting the care that they want and how we can meet their care needs more effectively. Alasdair Allan made that point.
In the motion and in his speech, David Stewart talked about giving people the “automatic right … to … full care at home day or night for their last few days of life”.
The Scottish Government has long been clear that ensuring that everyone in Scotland can live with human dignity is an essential part of our approach to public policy in Scotland. That includes providing care and support that is dignified and compassionate throughout our lives and when we die.
The provision of effective and compassionate palliative care forms part of our wider commitment to a healthcare system that seeks to ensure that everyone in Scotland enjoys their human right to the highest attainable standard of physical and mental health, and which respects, protects and fulfils human rights in general. Rhoda Grant turned the argument on its head and talked about a right to live at home.
Kilt walkers clocked up the miles for Marie Curie in Dundee.
The health and social care standards, which came into effect on 1 April 2018, were designed using a human rights-based approach and they act as a universal standard for how all health and social care should be delivered. They seek to ensure that individuals are treated with respect and dignity and that the human rights to which we are all entitled are upheld.
Because of its human rights approach, Scotland’s palliative care provision is internationally renowned. We should all support a human rights-based approach to people’s care, including end-of-life care, in which dignity, compassion and respect are central and, as far as possible, their care wishes are respected.
However, it is only by better understanding their specific needs that we can plan palliative care services to meet the needs of the individuals in our communities. A number of members, including Alasdair Allan, Dave Stewart and Rhoda Grant, mentioned that that is not always the case. Individual authorities are, however, working with local communities and building on the expertise of clinicians and third sector organisations to commission services that are designed to meet the palliative and end-of-life care needs of their local communities.
We know that challenges are associated with delivering that type of high-quality palliative care at home and that the challenges are often more acute for rural communities, as David Stewart and Alasdair Allan reflected earlier. However, with challenges, there are also opportunities. Dave Stewart and Beatrice Wishart raised the specific example of concerns over the availability of out-of-hours palliative care services at home in Shetland.
At the end of last year, the Shetland integration joint board informed the Scottish Government that it had produced a local palliative care strategy and accompanying action plan to improve the availability of care across Shetland. That was signed off last week. I assume that it has not yet been published or, if it has, it is hot off the press. It makes this debate and those points really important. It shows that the IJB in Shetland has been listening to the debate. The strategy that it produced was not drafted in isolation but 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 Susan Bowie, MSPs, the third sector and, most importantly, the local communities, as to what they want from the services. That is a blueprint for how to shape services; other IJBs might want to look at it. Although there is much work to be done, I look forward to seeing how that plan in Shetland is implemented and progressed in the future.
It is important for us to ensure that, nationally, the conditions are right so that local work such as that can be taken forward. Monica Lennon talked about the amount of spend. Our ambition to help to ensure that people get the palliative care that is right for them in a community setting is reflected in our budget in the current year, which provides investment of more than £700 million to support social care services and speed up the pace of integration. Discussions on the budget are on-going and it would be inappropriate to pre-empt their outcome. However, I can say that we are on track to deliver our commitment that more than 50 per cent of front-line NHS spending will be shifted to community health services by the end of this parliamentary session.
What does that mean for people in practice? Rhoda Grant talked about the amount of time that people manage to spend at home before death. Over the past nine years, the proportion of the last six months of their life that people have spent at home or in a community setting has gradually increased, from 85.3 per cent in 2010-11 to 88.1 per cent in 2018-19. Although it is clear that not everyone is dying at home, people are managing to spend more of that time in a homely setting. That is a good indication of the direction of travel.
David Stewart and Beatrice Wishart talked about the need for data in the area. They are absolutely right: data is vital, because it gives local communities the tools that they need to determine what services to commission to meet people’s needs. Without data, developing care plans remains difficult. That is why the Government has tasked ISD with clarifying the data requirements to support integration authorities in the planning and commissioning of local palliative and end-of-life care services, which is important.
Additionally, our palliative and end-of-life care data group is working with ISD to investigate a number of areas in which data collection can be improved and to explore ways to capture more information about the quality of care that people receive. That will help us and IJBs to develop appropriate services; it will also inform debates such as this one in future.
I am optimistic that, through some of the work that I have outlined, more and more people will get the end-of-life care that is right for them, in the setting that they choose.