The final item of business is a members’ business debate on motion S4M-12957, in the name of Dr Nanette Milne, on the Marie Curie report “Changing the conversation: Care and support for people with a terminal illness now and in the future”. The debate will be concluded without any question being put. I invite members who are leaving the chamber to do so quickly and quietly.
Motion debated,
That the Parliament welcomes the publication of the Marie Curie report, Changing the Conversation; further welcomes the publication of research commissioned by Marie Curie and carried out by the London School of Economics, which estimates that nearly 11,000 people in Scotland, including in the north east, who need palliative care are not currently accessing such care; notes the finding that people with a terminal diagnosis other than cancer, over 85s, people living alone and people from black, Asian and other minority ethnic groups are less likely to be accessing palliative care; further notes that a palliative approach is often recommended for people living with a terminal illness and includes pain and symptom management as well as physical, emotional and spiritual support; considers that this approach is proven to benefit many different illnesses; believes that, with Scotland’s ageing population and with more and more people living longer with multiple conditions, this problem will get worse unless action is taken; understands that the Scottish Government has committed to developing a new strategic framework for action on palliative and end-of-life care by the end of 2015, and looks forward to considering the findings.
17:02
I very much welcome the opportunity to discuss palliative and end-of-life care. I particularly welcome Marie Curie’s latest report, on changing the conversation on terminal illness, together with the important research on access to palliative care that has been carried out on behalf of the charity by the London School of Economics. I am also grateful to colleagues across the political divide who have enabled the debate to take place.
Defined as the active, holistic care of people with advanced, progressive illness, involving the management of pain and other symptoms and the provision of psychological, social and spiritual support, palliative care would clearly benefit very many people as they approach the end of their lives, not just those with terminal cancer, which is the condition that is most commonly diagnosed in those who actually receive that form of care. However, many people in the United Kingdom who would derive benefit from palliative care are either not offered it or receive it for only a very short time before they die.
The current facts are stark and indicate why positive action needs to be taken to support people who are living with a terminal illness, and their families, if they are to be sure of getting the care that they need as their condition progresses. Of the 54,000 people who die in Scotland each year, it is estimated that between 35,000 and 40,000 should have some palliative care. However, the LSE study for Marie Curie found that nearly 11,000 people who need such care are not receiving it and that only one in five people with a non-cancer diagnosis is identified for palliative care. The research further identified that carers across the UK claim that seven out of every 10 people with a terminal illness do not get all the care and support that they need and that a quarter of cancer patients are not receiving palliative care.
The specific groups of people who are less likely to be considered for palliative care are those aged over 85, those who live alone, those from black, Asian and minority ethnic communities and those who live in areas of deprivation. That is simply not good enough and indicates significant inequity of provision—a problem that will undoubtedly get worse as our population ages unless action is taken urgently to address the situation.
At present, a third of the patients in Scottish hospitals are in their last year of life and half of Scotland’s deaths occur in hospital, even though most people’s preference is to die at home or in a homely setting; we are already well short of providing the end-of-life care that most people seek. Given the predicted 13 per cent increase in deaths over the next 25 years and the fact that many of us who live well into advanced old age will have multiple and complex health problems such as dementia, heart failure, chronic obstructive pulmonary disease or the complications of diabetes or long-term obesity, there is a clear and urgent need for the conversation about terminal care that is recommended by Marie Curie.
We should acknowledge that people with all types of terminal disease, not just those with cancer, can benefit from palliative care, which, ideally, should be planned for from the point of diagnosis of the terminal nature of the illness so that an appropriate care pathway is in place as the condition progresses and that care can be delivered within the community, in a hospice or, when necessary, in hospital.
A significant amount of work remains to be done if we are to achieve a gold standard of palliative care for the maximum number of patients who require it. There has to be a conversation among policy makers, health and social care professionals, service planners and communities about the sort of care and support that we want to give people with terminal illness when their needs are becoming more complex, are often not being met and are likely to grow in number.
At the outset, health and social care professionals should be prepared to speak openly and honestly to patients and their families and carers about the terminal nature of their illness, and to help them to plan their care pathway by letting them know what services will be available to them and enabling them to make decisions that will help them as their condition progresses. Many health professionals and many families are uncomfortable about having conversations that acknowledge that death for their patient or relative is inevitable sooner rather than later although, depending on the condition and treatment, terminally ill people may live for days, weeks, months or even years after the diagnosis is made.
We need to try to change the culture in Scotland and to encourage more open discussion about death. People seem to be happy enough to make a will and there is growing discussion about organ donation, but there is still a barrier when it comes to acknowledging impending death. Professionals need to be given training and support to ensure that they can give high-quality, person-focused care to people with terminal illness, and better links need to be developed between generalists and specialists such as cardiologists, neurologists and those who specialise in palliative care.
As integrated health and social care develops, the new integrated boards should look to have palliative care at the heart of their strategic plans, because ineffective co-ordination of care between services such as health and social care or general and out-of-hours practice, and between different organisations, can lead to unnecessary delays in care and support. Despite the shortcomings in gaining access to it, palliative care in Scotland is recognised as being of a high standard, but we need to make more progress in achieving equitable access to good-quality terminal care for all patients who require it.
Marie Curie has several suggestions for the Government that it thinks will move things forward. It recommends that a reference to terminal illness, dying and death should be included in the Government’s planned revision of its 2020 vision document for Scotland; that palliative care should be an early priority for integration, as I have just described; that, in the new strategic framework for action on palliative and end-of-life care, which is due to be published later on this year, there should be a clear commitment to ensuring that everyone with a need for palliative care has access to it by 2020; that robust data is collected to measure progress and the experience of patients and their families; that training and support are given to health and social care professionals to deliver effective care for people who are terminally ill; and that a clear resource commitment is made to achieve the aims and objectives of the strategy.
We live in a time when more and more people are living into healthy and active old age, thanks largely to modern developments in medical techniques and pharmaceutical products, but all of us are mortal and, sooner or later, many of us will require palliative or end-of-life care. Some will require it earlier in life if they suffer from a congenital or degenerative neurological or other chronic condition or malignancy, while others will need it much later as a result of diseases that I have already mentioned. I would like to think that, in the foreseeable future, we can achieve a high standard of such care for everyone who needs it, whatever their personal circumstances and wherever they live in Scotland. As well as being desirable, that should be cost-effective. The Nuffield Trust estimates that savings of £500 per person could potentially be made by enabling people at the end of life to be cared for at home or in the community.
I look forward to the debate and to the minister’s response, and I hope that everyone agrees that high-quality, accessible palliative care is what we all wish to achieve and what we should be striving for.
17:09
I congratulate Nanette Milne on securing the debate. She outlined the work done by Marie Curie and the research undertaken on its behalf by the LSE. The report “Changing the conversation” demonstrates ably the need in Scotland to do exactly that—to change the conversation about death and dying and consider how we support those who are at that stage in their lives.
In recent debates on Marie Curie, some of us talked at length about the fact that the charity does not look after just cancer sufferers; a range of people benefit and many more could benefit. Nanette Milne comprehensively covered Marie Curie’s argument that we need to look at the care pathways that are available to people from the point of diagnosis.
I will concentrate on carers—the people who support others through a terminal illness. Caring for someone who is at the end of their life can be physically and emotionally draining, not least because the carer knows that their loved one will never get better. Many people who care for someone who is living with a terminal disease do not see themselves as a carer and therefore do not look for or get the support that they need.
The report that Marie Curie commissioned from the LSE shows how important carers are to people who are living with a terminal illness. The report highlights that people who do not have a live-in carer are less likely to report that they have sufficient support, and it is important to note that they are likely to have a worse perception of pain management and that they are far less likely to access community-based services. All of those are serious deficiencies in the system.
The LSE report demonstrates that more than 50 per cent of people die in hospital but that the vast majority of people would rather die at home. It suggests that having a carer is the single most important factor associated with a home death while, conversely, living alone increases the likelihood of a hospital death.
It is often difficult for people to navigate their way through the layers of professional and personal treatment and care that are involved in sometimes complex conditions. It is often up to the carer to navigate that perilous journey, but carers need support—they are often anxious and stressed. Not only do they have to watch their loved one going through a very difficult time—the most difficult time—but they might have given up work to look after them; they might have had to reduce their household expenses to cope; and they might have to pay higher bills, as looked-after people often need additional heating, supplies and special food. Carers can often be physically tired and emotionally drained because of the tasks that they have to undertake.
Carers put their own lives on hold and often neglect their own needs because of their dedication to their role. In some cases, they try to manage that role alongside the other roles that they fulfil in the family setting—as mothers, wives, husbands and fathers—as well as perhaps trying to be the breadwinner, if it is possible for them to continue to do that.
An important point is that Marie Curie does not think that that is good enough, and neither do I. Marie Curie argues that those who are caring for people with a terminal illness should automatically qualify for support, which should be underpinned by legislation. It thinks that health boards and health professionals should ensure that carers are involved in discussions about the care of the person they look after. In addition, it believes that there needs to be more support for carers and, crucially, that that provision should be consistent across Scotland.
Marie Curie is to be congratulated on many things. The report comes at an important time, so I, for one, thank it for identifying what needs to be done going forward as well as for all the things that it has done for so many years.
17:14
I thank Nanette Milne for securing the debate and giving us the opportunity to discuss this important matter. I congratulate Marie Curie on the production of its important document.
As “Changing the conversation” makes clear, because life expectancy is improving, people with a terminal illness are living with more complex needs than before. It also makes it clear that people in Scotland in the last six months of life spend anywhere between 10 and 22 days in hospital, although most people want to be cared for in their homes at the end of their life.
At a recent meeting of the cross-party group on dementia, we discussed end-of-life and palliative care. We were fortunate enough to have Richard Meade of Marie Curie and Amy Dalrymple of Alzheimer Scotland as guest speakers to explain the work that their organisations do on palliative care for people with dementia.
In addition to “Changing the conversation”, Marie Curie recently produced “Living and dying with dementia in Scotland”, which sets the scene. We know that almost 90,000 people in Scotland live with dementia and that the number is set to double by 2031. Close to 60 per cent of people die in hospital but, as I said, the vast majority would prefer to die at home.
A very small number of dementia sufferers receive palliative care, compared with 75 per cent of terminally ill cancer patients. When dementia sufferers get palliative care, it is usually only in the last few weeks of their life. As Marie Curie suggests, only 20 per cent of dementia sufferers who would benefit from palliative care receive such assistance.
Why are people with dementia and others not getting the care that they need at the end of their life? There are a variety of reasons. Location is certainly one of the factors. People in rural communities are at a disadvantage, as are those who live on their own. It is clear that the national health service and voluntary providers have limited capacity to deliver the necessary palliative care training and support to care homes. Care homes have limited capacity to make staff available for training and to improve practice, and they are hampered by the rapid turnover of staff that is prevalent in many care homes and which makes it harder to embed and sustain the right approach. We have problems.
We must accept that terminal dementia has implications for the type of care that is provided. Many of those with the condition have little or no access to specialist care. If dementia is diagnosed as terminal, we need to ensure that those people are provided with the care and support that they need, in the way that we would with any other person who is diagnosed with a terminal illness.
There are issues with identifying dementia as the ultimate cause of death on death certificates. Often, an infection or other common illness is registered, which creates a culture in which dementia is not recognised as a cause of death in its own right. We must work to improve that. However, there has been an increase in the prevalence of dementia on death certificates. My mother died last year. She had a variety of illnesses, but the cause of death was stated to be dementia.
What can we do generally to help tackle the situation? With an ageing population, it is vital that policy makers, health and social care professionals and charities work together to ensure that people with dementia receive the appropriate care and are fully supported at the end of their life. I would like end-of-life dementia care to become a core part of the national dementia strategy. We should work to reach the point at which people who might benefit from palliative care get it. We also need to focus on collecting appropriate data, so that there is a clear national picture of the level and quality of care being received.
There are some positives. A new palliative and end-of-life care national advisory group was set up at the end of last year and the Government has published new guidance to support clinical and care staff who plan for and provide care during the last days of life. I hope that the minister will comment on the positives in closing.
17:19
I congratulate Nanette Milne on bringing the debate to the chamber and highlighting the importance of the report by Marie Curie for the future of the health system as a whole. We have seen the numbers relating to palliative and community care, and through them the underlying causes for the lack of equal and accessible care for everyone who needs it.
I confirm my support for the work of every person who is involved in making those services more accessible. I note the report’s findings that tens of thousands of people are dying each year without having been given palliative care, and that more than half of those who pass away in hospitals had wanted to do so in the comfort of their homes. I find it disturbing that there are visible differences in the care that different groups of people receive based on their age or their ethnic or social background.
Although the fact that advances in technology, medicine and care are helping people to live longer is a promising indicator in moving towards the goal of better health, more people are developing multiple long-term conditions. The rising numbers of people who are living with multiple and complex conditions mean that the pressure is rising in hospitals, while—as has been said—more than 50 per cent of people want to be cared for at home towards the end of their life.
The report notes that investment in healthcare
“remains very much focussed on acute services in a hospital environment”
and not on services in the community. There are unplanned hospital admissions that take up valuable bed days while resources could be directed towards people’s needs at home. As a result of those undesirable hospital bed days, people are losing between 10 and 22 days that they could have spent with their families during the last six months of their lives. As the Marie Curie report highlights, the current situation is not fair.
If we are to make palliative care more equally accessible to everyone who needs it, we must ensure that inequalities that are to the detriment of people receiving care are eliminated. No one should be denied care because of where they live, how old they are or their ethnic background.
There is an opportunity to improve the situation through the integration of health and social care, which will be implemented by early next year. If resources are allocated appropriately and fairly, and if implementation involves all the relevant stakeholders, a lot of people will benefit through increased systemic support and care that treats each person with a terminal illness as equally important.
There are other underlying problems that should be discussed. Many people struggle—understandably so—to come to terms with their conditions, making them withdraw socially and often leading them to develop feelings of loneliness and depression. The last thing that we want is for people with terminal diseases to feel as if they are not equal members of society because of their illnesses and conditions. Tackling social isolation must be a top priority in terms of how care is provided. We need clear uninterrupted information for, and involvement of, the care receiver, close family and friends.
I have spoken about my support for equal access to palliative care for everyone who needs it. I point out my party’s commitment for zero tolerance of any kind of inequality in receiving such care, and our support for ensuring sufficient resources for the integration of health and social care in the community. I hope that the discussion will develop robustly and allow for a multitude of constructive opinions.
I finish by thanking not only Nanette Milne for the debate but Marie Curie for its report.
17:23
I join colleagues in congratulating Nanette Milne on bringing the debate to the chamber. I thank Marie Curie for producing the “Changing the conversation” report on terminal illness, which is timely and important.
During the previous Edinburgh festival I attended a number of diverse events that were all very enjoyable for a range of reasons. The one that affected me most was a sort of variety show, during which my emotions were pulled in all directions. It is the event that has most stayed in my memory and will live with me the longest. It was effectively a showcase that pulled together a few of the performers who were performing as part of “Death on the Fringe”, which was a series of shows and events looking at death and dying; it was essentially a festival within the festival. Some acts were serious and some were comical, but they all made us think about what it means to live well and die well.
“Death on the Fringe” was part of good life, good death, good grief, which is an on-going charity-led campaign that works to promote more openness about death, dying and bereavement. The campaign’s aim is to make people aware of ways to live with death, dying and bereavement and to help them feel better equipped to support each other through those difficult times.
The specific event that I attended was used to promote a further event that was held last November, when the good life, good death, good grief campaign initiated the to absent friends festival, which is a people’s celebration of storytelling and remembrance. It provided opportunities for people across Scotland to remember and tell stories about dead loved ones.
The good life, good death, good grief campaign is currently a finalist in the Scottish charity awards for its work and I wish it well. It is a hugely significant campaign because Scotland must break free of the cultural shackles that prevent people from talking about end-of-life issues and death itself.
Death, dying and bereavement affect all of us, yet talking about and planning for the experiences and practicalities associated with death, dying and bereavement can be difficult. A few years ago, the cross-party group on palliative care had a presentation and discussion on the history of how we treat death in this country, and it was both fascinating and concerning to discover why we as a nation have developed such a dismal, morose and cheerless attitude towards the subject. The cross-party group has also heard about the experiences of palliative care experts who have gone to Africa and seen how the attitude towards death and dying in the countries in that continent contrast so starkly with the manner in which we debate the subject.
We need to become more open about death, dying and bereavement because our attitude is holding us back and impacting adversely on how we deliver health services. Because general practitioners find it difficult to discuss death and dying with patients and because patients find it uncomfortable to discuss how they might die, we create an environment in which we curtail an understanding of terms such as “palliative” and “hospice” and we erect barriers that prevent people from obtaining effective services and support.
Marie Curie is, therefore, correct when it says:
“Everyone living with a terminal illness should have access to high quality care and support, which meets all of their needs.”
We have to break down the barriers that prevent that from happening. To get to that point we need to transform the conversation about terminal illness so that people can have the best possible quality of life and death, regardless of their circumstances. It should not be those with the loudest voices and the sharpest elbows who get access to the services that people—especially those from the most deprived communities—need.
We have to make people more comfortable about using words such as “death”, “dead” and “dying” and enable them to make choices relating to their own death and dying. Health and social care professionals and volunteers in all care settings must be made able to have discussions relating to death, dying and bereavement with patients and families. We often hear about the importance of starting early with our young people on reading, writing, the environment and other issues, but we must also ensure that children grow up treating dying as an inevitable part of ordinary life.
Palliative care is often ignored or at best tagged on to far too many of our health strategies. We have to make it available, accessible and appropriate. It is central to meeting the multiple needs of each individual person requiring additional care to live well. The Marie Curie report emphasises, yet again, why we need to make that so, and it is very welcome because of that.
17:28
I thank Nanette Milne for securing the debate on what is a sensitive but very important subject. I also thank Marie Curie for all the work that it undertakes across the communities of Scotland.
The “Changing the Conversation” report that Marie Curie published last month is very helpful. That report and the Marie Curie-commissioned LSE report that has been referred to both helpfully emphasise the importance of creating the conditions in which conversations about all those pressing issues lead to action—action that will make clear the essential priorities for the future co-ordination, planning and delivery of high-quality palliative and end-of-life care for everyone who needs it. Those issues must be considered for everyone, including people who are living with a wide range of conditions, as well as children, young people and their families, who are also sadly affected by conditions for which a cure is not possible.
Our commitment in Scotland to a new strategic framework for action was made in recognition of the need for a nationally agreed set of actions that will deliver the changes that organisations such as Marie Curie have rightly highlighted as being urgently required.
Equity of access to palliative and end-of-life care services, irrespective of where people live or what clinical condition they have, will be a central element of the framework. We have established a new national advisory structure, refreshed stakeholder engagement arrangements and detailed plans to support our commitment to publish a strategic framework for action towards the end of this year. The structures that are now in place provide more effective links with GPs, hospice chief executives, nurses, palliative care specialists and the leadership of national health service boards, local authorities and national scrutiny and improvement organisations. We will achieve improvement by working with people, encouraging participation and ensuring that everyone feels that they can work together towards a common aim, which is to have palliative care available to everyone at the earliest possible opportunity.
The legislative changes that we have introduced on the integration of health and social care set in place a new framework for how services are organised. Jim Hume rightly spoke of the opportunity to improve through the integration process. Integration joint boards will now be responsible for commissioning palliative care services in hospitals and communities, and for ensuring that the combined resources from health and social care are targeted through strategic commissioning. We expect the new integration joint boards to take account of all the issues that are raised by organisations such as Marie Curie and to ensure that their strategic commissioning plans describe and demonstrate how resources, skills and services will ensure that everyone who needs palliative care gets it, no matter where they live or what condition they are living with.
The third sector has an important role in the integration process. Rod Campbell spoke about the role of the third sector and mentioned Alzheimer Scotland in particular. It is important to remind ourselves that dementia is a terminal illness. In that regard, there are around 1,500 NHS or NHS-paid-for dementia continuing care or dementia specialist beds in Scotland, providing some of the most complex, intensive and challenging care for people in advanced stages of their dementia. Scottish Government officials recently met Alzheimer Scotland to ensure that the work that it is doing on a service model for dementia care at the end of life informs our strategic framework for action, which I referred to earlier.
In taking forward our work on palliative care, the Scottish Government fully recognises that we need to address the taboo that exists in Scotland around discussing death and dying, which Michael McMahon spoke about. We are supportive of good work on people being able to talk about death and dealing with related issues. An example of that is the Scottish Partnership for Palliative Care’s good life, good death, good grief alliance, which Mr McMahon mentioned.
On the point that Mr McMahon and others made about doctors feeling confident about discussing death, the Scottish Government is working closely with the General Medical Council in Scotland to support doctors, who often report a need for advice on having the confidence to have an open conversation with their patients on such matters. The establishment of a communication coalition is also being considered, in response to growing calls from key stakeholders to have a more visible strategic commitment and to support more dialogue regarding care preferences when a cure is not possible.
We need to be bold if we want to create the conditions for people to feel able to broach the issues and to move away from the medicalisation of some aspects of palliative and end-of-life care. People know what matters most to them, and they need to be supported to talk to doctors, nurses and care staff about the issue. Talking about preferences for care and being more open when time is becoming short often lead to a much better quality of life and a relief that difficult conversations no longer need to be feared or avoided.
We know that most people want to plan care that supports them to be at home with their families at the end of their lives. That is why anticipatory care planning is now central to health and care in Scotland. A cross-sector group has been established, with representation from health, social care, housing, the third and independent sector and service users to help embed anticipatory care planning in every locality and enable people to think ahead and to record their wishes. More people need to be supported to have such care plans in place.
With regard to people being supported at home, Patricia Ferguson rightly highlighted the important role of carers of those with a terminal illness. At the end of last year, the Scottish Government published new guidance to support clinical and care staff who are planning on providing care during the last days and hours of life. One of the four key principles that are identified is that consideration should be given
“to the wellbeing of relatives or carers attending the person.”
We have published the Carers (Scotland) Bill, which will ensure better and more consistent support for carers and young carers so that they can continue in that caring role.
Marie Curie has rightly emphasised the importance of being able to have data and information to be able to describe progress. It is particularly interested in the views of informal carers for the evaluation of services—VOICES—survey in England. Our future plans, therefore, must include the enhancement of a national approach to measurement and monitoring. That includes a key indicator on end-of-life care as part of the requirements to measure improvements in health and wellbeing outcomes under health and social care integration.
Those indicators will, of course, need to be tested over time and evolve to reflect the changing needs of individuals, so I will ask officials to ensure that we also encourage the local use of VOICES survey questions to support improvement and provide data at a national level to inform future strategy and policy development. The aim is to ensure that there is a good quality anticipatory care plan in place for those who need it, and we will consider whether there is a requirement for any additional qualitative and quantitative measures on which we can build and improve.
In addition, the Scottish Government has been working in partnership with the NHS, the Convention of Scottish Local Authorities and the third sector to develop a new framework to effectively listen and respond to the voices of those who use health and social care services. Over time, as it is implemented, the stronger voice initiative will provide an increasingly robust framework in Scotland for continuing dialogue with people on what they want from health and social care services.
I hope that that gives an indication of the great importance that this Government places on supporting people who are near the end of their lives and are in what are difficult circumstances for them and for their families. Of course, we will always be willing to consider what more we can do.
Meeting closed at 17:36.Previous
Decision Time