Palliative Care
The final item of business today is a members’ business debate on motion S4M-7599, in the name of Nanette Milne, on Marie Curie, signpost to palliative care.
Motion debated,
That the Parliament welcomes the publication in the European Journal of Palliative Care on 9 September 2013 of the study, How good is primary care at identifying patients who need palliative care?; notes that the study was carried out in partnership by Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian; understands that only 20% of patients with a non-cancer diagnosis were identified for palliative care before dying; further understands that patients who were identified for palliative care received it too late to fully benefit; considers that patients and primary care staff find it difficult to discuss death and dying; believes that more needs to be done to offer supportive and palliative care to more people with life-threatening illnesses in North East Scotland and across the country, and supports the Good Life, Good Death, Good Grief initiative as a way of tackling what it sees as the Scottish taboo of talking about death.
17:13
I am very pleased to have been given the opportunity to lead a parliamentary debate on the report “How good is primary care at identifying patients who need palliative care?” just nine days after its publication in the European Journal of Palliative Care. I thank all the MSPs who have supported my motion since it was lodged last week. The report is the result of a collaborative study by Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian, led by Professor Scott Murray and Dr Lilin Zheng of the university. I flag up a north-east connection, as Professor Murray began his career in primary care as a trainee in the Elmbank practice in Aberdeen, where my husband was a partner.
The study is the first in the UK to examine the point at which patients are formally identified for palliative care. It obtained its information from the experience of 684 patients across nine Scottish general practices. It found that, whereas 75 per cent of cancer patients were identified for palliative care before dying, only 20 per cent of patients with organ failure as a result of chronic heart, lung, liver or kidney disease, or who had dementia, either asked for or were identified for palliative care. Most patients received it too late to gain full benefit from it. On average, care was initiated just eight weeks before death.
The study also found that few patients openly admitted that they might die, as they were put off by the negative connotations and lack of understanding of terms such as “palliative” and “hospice”. It also found that, sadly, general practitioners found it difficult to discuss death and dying with their patients, in particular patients who had a non-cancer diagnosis, even though they recognised that open discussion is helpful for patients, their relatives and the people who take care of them.
The task of identifying patients who would benefit from palliative care was found to be easier for GPs if patients and/or family members asked them for information and extra support, and specific tools such as multidisciplinary meetings and national guidance were found to be of help to them in making decisions to formally identify such patients.
The World Health Organization has stated that all patients with a life-threatening condition can benefit from palliative care, which it recommends be phased in from the point of diagnosis. However, many such patients are not being identified in hospital or in primary care, and the resultant late access to palliative care limits the opportunities to improve the quality of life of patients in their last year of life.
The study concludes with four recommendations. It recommends that patients who are diagnosed with life-threatening illnesses should be encouraged to discuss and plan their future care so that their wishes can be accommodated, and that doctors and nurses should offer supportive and palliative care to more people with such conditions.
The Scottish taboo around talking about death should be tackled, and the report considers that the Scottish Government should lead a public discussion on issues surrounding death and promote more widely its national plan for palliative care, which is called good life, good death, good grief. The report’s final recommendation is that all doctors and nurses be trained in how to identify when patients need palliative care support in addition to the normal treatment for their condition, and that such training include the provision of support to health professionals to have conversations about death and dying.
None of this is rocket science, and if the recommendations were taken on board, many more patients and their families would be helped towards a positive end-of-life experience through the prevention and relief of suffering and the early identification, assessment and treatment of pain and the associated physical, psychosocial and spiritual problems, and by being enabled to choose where they want to be cared for and where they wish to die.
I ask the minister to say, when he responds to the debate, what plans there are, in conjunction with the Royal College of General Practitioners, to review the training of GPs and primary care staff to help them to have better communication with their terminally ill patients, and to ensure that more non-cancer patients access palliative care in the last year of their lives. I also ask the Government, particularly at a time when we will soon be hearing the arguments for and against Margo MacDonald’s proposals for patient autonomy in deciding when to end life, how and when it will initiate a public debate on death and dying in an attempt to overcome the taboo that currently surrounds the issue in Scotland.
I thank Richard Meade of Marie Curie Cancer Care for his help in preparing for the debate and I pay tribute to Marie Curie Cancer Care for the huge amount of work that it does in Scotland and across the United Kingdom for patients with terminal illness. We have all heard of Marie Curie nurses, but the breadth and extent of the charity’s work is less well known. Its 740 employees in Scotland, its 300-plus volunteers and the 3,000-plus people who collected for this year’s great daffodil appeal mean that nearly 4,500 patients in 31 out of 32 Scottish local authority areas are supported by nearly 400 Marie Curie nurses, who give them excellent end-of-life care and the choice to die at home, if that is what they wish. Research shows that although the vast majority of people wish to die at home or in a hospice, nearly 60 per cent of deaths in Scotland occur in a hospital. I firmly believe that, without the support of Marie Curie nurses, that proportion would be significantly higher.
Well over 900 patients have been cared for in the Marie Curie hospices in Edinburgh and Glasgow in the past year, and nearly 5,000 have been supported in the community in those two cities alone. Marie Curie also provides emotional support and companionship for many patients with terminal illness, and through its bereavement support services supports their families and carers after the patient has died.
Moreover, as well as doing its own research, the charity funds one of the UK’s largest palliative care research programmes. Much of that research, including the study that we are discussing, is collaborative and aimed at finding practical ways of improving the care of patients who—from whatever cause—are terminally ill, and of their families.
Although I could say much more about Marie Curie Cancer Care, I will leave it to others to fill in the gaps that I have left. I look forward to the debate and congratulate all those who have contributed to this very important study on access to palliative care on publishing such a comprehensive report. I commend it to the minister and to Parliament.
Before I call Malcolm Chisholm, I remind members in the chamber to switch off mobile phones and other devices, unless those devices are being used to deliver a speech, in which case they should be switched to silent.
17:20
I congratulate Nanette Milne on bringing this important issue to the chamber, and I congratulate Marie Curie Cancer Care on its involvement in this work and, indeed, on its superb contribution to palliative care.
As the report with which the charity is associated confirms, there is a huge disparity between the 75 per cent of cancer patients and the 20 per cent from the non-cancer group being identified for palliative care; furthermore, the support that is given to the non-cancer patients is often too little, too late. Those include patients diagnosed with heart, lung, liver or kidney organ failure or with dementia.
The research team, which investigated the cases of 684 patients from nine general practices, concluded that a gradual and long-term approach to phasing in supportive and palliative care while continuing with other treatment care planning would benefit patients and their families.
I want to make three general points about palliative care not necessarily for members in the chamber but for people outside. First, palliative care, as defined by the Scottish Partnership for Palliative Care,
“is a proactive approach involving a multi-professional team. As well as controlling pain and other distressing symptoms, it applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement.”
Secondly, such care is not location-specific and can take place in the community as well as in the hospices that are well known to everyone. Thirdly, general practitioners keep a palliative care register, from which the 20 per cent figure has been derived.
As the motion points out, it is fundamental that we break the stigma of talking about death. The good life, good death, good grief campaign highlighted in the motion not only supports those going through the death and grieving process but seeks to normalise that process and open up conversations on the surrounding issues. Like the report, the campaign points out that it is never too early to think about planning ahead for illness and death and that making plans when we are healthy means that the pressure of making crucial decisions is lessened at the point when sickness takes hold.
Professor Scott Murray from the University of Edinburgh, who was involved in the research, points out:
“if we are going to better improve the chances for everyone with both cancer and non-cancer diagnoses to benefit from palliative care, doctors and nurses should be comfortable and able to talk to and listen to patients when they want to talk about death and dying.
The big challenge for patients is to talk about how you feel, and what you would like if you become ill, so that your relatives and friends and doctors know what to do.”
Only by doing that will we be able to ensure that maximum numbers of people receive the emotional, spiritual and practical support through services that all patients deserve.
That is beginning to happen in the Lothians, where a complete redesign of the NHS palliative care programme is being directed by Marie Curie in partnership with NHS Lothian. In fact, NHS Lothian, along with the University of Edinburgh, should be congratulated on its association with the research. Using a whole-systems approach to delivery, they hope to reduce the number of avoidable emergency admissions and give patients the choice of place of death and, by doing so, work to improve the community-based model of end-of-life care and make the process less intimidating for those involved.
Based on the delivering choice model that was found to be successful in Somerset, the redesign will involve three key stages of design and implementation and it is hoped that, through an effective assessment of local need, services can be developed to operate more effectively while ensuring that local clinical staff are engaged with process and have ownership of the models.
Finally, continued support is necessary in the implementation of the redesign structures throughout the area. As this consultative approach between the NHS and Marie Curie to providing a more accessible and coherent framework for care delivery has been seen to work elsewhere, I am glad that it is being implemented in this area.
Once again, I congratulate Nanette Milne on bringing this motion to Parliament, and I whole-heartedly support it.
17:24
I thank Nanette Milne for bringing this debate to the Parliament and Marie Curie Cancer Care for the report that has been provided entitled “How good is primary care at identifying patients who need palliative care?” I welcome that report and what it brings to the debate, because palliative care offers support to patients and their families at a time when they really need it. That can be an extremely difficult time for members of families as well.
In Renfrewshire, we are served by two hospices—the Accord hospice in Paisley and St Vincent’s hospice in Johnstone—both of which offer care and support for families at times of death. The support that they offer is fantastic. As a politician, I talk about palliative care, the Accord hospice and the work that it does, and I regularly congratulate it, but when people go through that hospice, they see it for what it really is.
When my mum was diagnosed with cancer earlier this year—she died in August—the Accord hospice was absolutely incredible. She got the opportunity to be there and was lucky to be there. When the hospice discussed palliative care with her at the early stages of her diagnosis, she panicked. She had a taboo as the individual who was dealing with it, and she would not have the conversation with us. I spent hours talking to her, as other family members have done with their families. I said, “No. This is about getting you home and making sure you can have palliative care in the home.” That was the original plan, but things moved on and things got worse.
I agree with the report’s four recommendations. I would have agreed with it beforehand, but things are reinforced when you go through such an experience yourself. Patients with life-threatening illnesses should take every opportunity to raise and plan their future care according to their own wishes, but we have to get over the taboo. We must get the idea over to people that family members and individuals should be able to talk to one other about that. The matter is difficult for all of us to deal with, and the taboo is still there.
I know that the Government has the good life, good death, good grief initiative. We need to ensure that more people know about that initiative so that, when other families are in that type of position, they do not have to go through the same difficulties. We have to ensure that all such families get the opportunity to say that there is something more, because someone could give up at that stage and think that palliative care means that they are heading straight for a hospice. It is clear that that is not the case in many situations.
On a personal note again, I want to take the opportunity to say how the Accord hospice in Paisley was fantastic with my mother. The palliative care is simply incredible. When families are moved there, there can be quite a shock. People go full circle with their family: they go from their mother feeding and looking after them to their doing the same for her. Families are asked whether they want to do that, and it can be awkward. They do not want to say no, but they feel awkward because they want to look after their mother or father in their last days.
I thank Nanette Milne for bringing this debate to the Parliament and for giving me an opportunity to talk about the issue.
17:28
I congratulate Nanette Milne on securing the debate, which allows us to speak positively about the role of palliative care in Scotland. I also commend Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian for producing their study, which was published recently.
I want to focus on the section in Nanette Milne’s motion that highlights the reality that we in Scotland have a real collective difficulty in talking about death. Death, dying and bereavement affect all of us, but talking about and planning for the experiences and practicalities associated with them can be difficult. We simply do not open up as a country when it comes to talking about dying and bereavement, and that is not good for us as individuals or as a society. Indeed, studies have shown that unnecessary harm is caused because people in Scotland are not open about the subject.
As the study that we are discussing found, GPs can find it difficult to discuss death and dying with patients. Few patients openly discuss the possibility that they might die from their condition, although doctors think that that can be helpful. A lack of understanding around terms such as “palliative” and “hospice” can be barriers for starting palliative care and support.
It does not have to be that way. At a meeting of the Scottish Parliament’s cross-party group on palliative care a few years ago, we had a presentation from palliative care specialists who had recently returned from west Africa, where they had witnessed an entirely different cultural attitude towards death and dying. Professor Scott Murray, one of the authors of the report on palliative care, was one of those specialists. They told us that they had gone out to learn about the delivery of palliative medicines but that they were struck most not by the difficulties that face medical practitioners in the developing world in delivering adequate palliation in challenging circumstances of high mortality rates and severe poverty, but by the way in which death and bereavement is celebrated in those cultures.
Another CPG meeting was on the history of death and dying in Scotland, and I was amazed to learn just how much of an impact the reformation had in creating the closed culture around death that still pervades Scottish society today. As a member of the Irish Catholic community in Scotland, I am familiar with wakes, so I found it fascinating to learn of the strictures placed by the Church of Scotland on burials and associated rituals. I am pleased that those restrictions have loosened over time, but there is still some way to go before Scotland becomes more comfortable with burials in the future than it was allowed to be in the past.
I particularly welcomed the creation of the good life, good death, good grief initiative, which seeks to engage support for and enhance the assets of organisations and individuals who have the potential to improve the experience of death, dying and bereavement in Scotland. The initiative is an alliance of more than 700 organisations and individuals who believe that Scotland should be a place in which people can be open about death, dying and bereavement. I believe that Scottish society would benefit from being more open to death, the dead and dying, and that we would become more aware of the options and choices that are available when we are faced with the end of life.
Health and social care professionals and volunteers in all care settings would undoubtedly feel better about being able to discuss with patients and their families and friends a wider range of issues relating to death and bereavement. If people were better placed to talk about death and deal with related issues in a constructive way, there would be more effective support for those dealing with death and bereavement.
Death is an inevitable part of life, but we would face it better if we could make palliative care more available, accessible and appropriate to meet the various needs of each individual person requiring additional care to live well until it is time for them to go and leave the rest of us behind to celebrate their lives.
17:32
I, too, congratulate Nanette Milne on securing this evening’s very important debate, which gives us the opportunity to discuss an important publication and the wider issue of the provision of palliative care in Scotland.
The publication in 2008 of the Scottish Government’s first action plan on palliative care—“Living and Dying Well: A national action plan for palliative and end of life care in Scotland”—was a welcome step. There had clearly been issues in identifying those whose medical condition made them appropriate recipients of palliative care and in ensuring that those people did, indeed, receive it. The report acknowledges that by stating:
“To date, however, the provision of specialist services for palliative and end of life care in Scotland ... is known to be directed mainly to people with cancer, with a greater range of services available to cancer patients and their families.”
That was true in 2008 but, unfortunately, it is still true.
NHS Lothian, the University of Edinburgh and Marie Curie Cancer Care deserve great credit for the work that they did on the publication that we are debating tonight. Its findings are stark and in some cases shocking, and provide a clarion call for action. The fact that only one in five patients dying from non-cancer diseases receives palliative care shames us all, particularly when that was identified as a problem in the national strategy five years ago.
The Scottish Government has made progress. Palliative care guidelines have been developed and we are now the first country in Europe to have implemented a national electronic system for communicating anticipatory care planning for palliative care patients; in addition, the do not attempt cardiopulmonary resuscitation policy has been developed. However, there is still much to do.
One of the more enlightening areas of the research was the views of the health professionals. It is clear that GPs across Scotland are having real difficulty in identifying which non-cancer patients are appropriate for palliative care. They are also having difficulty in discussing death and dying with non-cancer patients with life-threatening conditions.
This is an incredibly delicate and sensitive topic and no one envies the task that our GPs face, but it seems to me that this is something that could be tackled, perhaps with some targeted training in palliative care for GPs. A critical feature of the GP’s role is to speak to patients about their end-of-life care. If they are having difficulty in doing that, the Scottish Government has to investigate. Perhaps a working group of general practitioners could engage with those behind the good life, good death, good grief initiative to establish how we can better enable GPs to have these extremely difficult but necessary conversations and tackle the taboo, as it were.
Some 60 per cent of patients die in hospital, but the vast majority understandably wish to die at home or in a hospice, as Nanette Milne said. I therefore believe that we still have a long way to go. We need to use the integration of health and social care as a golden opportunity to increase people’s opportunity to pass away in the familiar surroundings of home.
It is in everyone’s interests to ensure that those who are in their most vulnerable hour receive the finest care and care that is appropriate to their needs. Not only does that alleviate the patient’s suffering, it represents significant savings for the NHS by supporting the patient’s end-of-life care earlier and in a place of their choosing.
17:36
As many members have mentioned, Scots are not very good at dealing with these types of things. Death is a time that brings out the best and worst in people. Often, we do not like dealing with all the practicalities surrounding death, expressing our emotions and taking time to look at the practical steps that we need to take. We do our best to avoid those things until we have to do them. We do not tell the people who are closest to us simple things such as how much we love them until it is too late. Often, we do not address key divisions in our families and things that have burned away, sometimes for generations, until time is at its shortest. It can be a healing time and a healing process, but it can also cause many further divisions that leave the people who are left behind with lifelong regrets.
As the report suggests, patients are often offered palliative care very late, and the experience of going through the planning for death often puts pressure on families, who have to help the sufferer, and the people in hospitals who deal with people in their final days. I agree with Nanette Milne that we need a national debate and discussion about these important issues if we are to become more comfortable talking about them and related issues such as spiritual, medical and financial issues, and relationships. If we can take the debate to a more mature level, it will help not just patients and their extended families and friends but everyone who is affected by people being in that position.
When my father was in the Marie Curie hospice in Edinburgh, the help and support for my family was fantastic, but it came very late in the day. That was not the hospice’s fault but probably ours, because we did what other people do and avoided the issue until death was almost imminent. People need to talk about death and dying and share their feelings, fears and medical needs.
People also have a lack of understanding of what palliative care is. I certainly did until it came to my doorstep. My wife works in the NHS as a clinical support worker and she often provides palliative care to cancer sufferers. She tells me heart-warming stories of people’s humility and humanity, the reconciliation of families and people finding peace with themselves through that period, and all of that is greatly assisted by the carers who help people through that time. I will give a simple example. My wife used to be a hairdresser, and if someone who is receiving palliative care wants their hair cut, she will do it. A simple act such as that makes them feel so much better. Such issues might be minor to us, but they are major to the person who receives support.
We all want to die with dignity, and I hope that the report takes us down the road towards a mature debate about such matters.
On a lighter note—there ain’t many light notes on this issue—I was cycling by the canal in West Lothian last year when I met a guy who was walking his dog. I asked him where he was going that evening, and he said that he was going to a dying party. I said, “What do you mean, a dying party?” His friend had only a few weeks to live and had paid for a party in the pub for all his pals, so that they could have a great send-off for him. That was someone who was at peace with himself and was—I hope—moving on to a better place. There is a lesson in that for many of us.
17:40
I congratulate Nanette Milne on securing time for the debate and I take the opportunity to thank Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian for producing the report that we have been considering. I am sure that all members who have read the report realise that it is not criticising what is there, but recognising what is there and considering how and where it can be further improved.
It is in all our interests to ensure that palliative care is provided safely and effectively, at the appropriate time and in a person-centred way, to improve the situation not just for the cared-for person but for the family at that vital time that is the end of someone’s life.
In the past there was a tendency to regard palliative care as the province of the hospice and acute sectors, but it is important that we acknowledge that, nowadays, a great deal of palliative care is provided in the community and led by primary care teams. There are challenges for the primary care team in addressing issues with patients and families in the community setting, and it is important that we consider what action we can take to improve work in the area. The report illustrates the need for progress to be made.
The report acknowledges the important work that has been taken forward. Our national action plan, “Living and Dying Well: a national action plan for palliative and end of life care”, is addressing a number of key issues that are highlighted in the report. Indeed, the report identifies areas that have been taken forward as part of the plan, such as the work on national guidance and payment structures, which has improved the situation. However, there is a need for further action.
The Government seeks to take forward policy in a collaborative way, working in partnership with the wider sector to ensure that we take forward the national action plan appropriately and have the right priorities. The living and dying well national advisory group’s work is crucial in assisting us in that regard and supporting the work that is needed in NHS Scotland and beyond.
It is extremely important that we do some work to ensure that there is an equitable approach throughout the country. That does not mean that care must be the same in every part of the country, but a patient in the primary care setting in Grampian should expect to receive the same type of palliative care support that a patient receives in Falkirk or in Glasgow. There is work for us to do to ensure that care is more consistent, and the national action plan tries to take the matter forward.
The report makes an interesting point about patients who do not have a cancer diagnosis and who have difficulty accessing palliative care. That might be to do with professionals not recognising the issue and discussing palliative care with the patient, because of the nature of their condition, or it might be to do with other factors. No matter what it is, it demonstrates the need for us to look at palliative care on a much more holistic basis. The national action plan is very clear in focusing on the person, not the condition. We must ensure that palliative care is provided in that holistic way, as Malcolm Chisholm said, from the physical to the practical, the functional, the social, the spiritual and the emotional. It is important that it is looked at in that holistic context.
A key part of addressing these issues is appropriate planning. Anticipatory care planning is an important element of ensuring that our primary care colleagues are able to manage the issues more effectively. Jim Hume referred to the fact that we have done a lot of work to improve anticipatory care planning within the general practitioner setting. We are starting to reap some reward from that and it is helping to facilitate some improvements, but we need to build further progress on that. We must look at how we can get much more effective integration between GPs and the wider primary care team, including groups such as pharmacists, who must be seen as part of that team in helping to manage someone’s palliative care provision.
A number of members have referred to public attitudes to death and dying. Members will recognise that none of the issues will be addressed quickly or easily. Individuals often have a natural aversion to talking about dying and death. Some good work has been undertaken, which members are aware of, through the good life, good death, good grief programme. We need to build further on that to allow those discussions to take place.
One of the challenges is the fact that, although professionals can be provided with the tools and the skills to enable them to have those discussions, some professionals still find that difficult. I recognise that there is a personal element to it. No matter how much we arm our staff with the skills and knowledge—a range of resources on palliative care can be provided through NHS Education for Scotland and others—there is a personal element to the work with families, including among the staff who work with the patients, that must be recognised.
We must ensure that we have a healthy dialogue in this country around the issues to do with palliative care, including the positive nature of palliative care, and we must discuss death and dying more openly. No single campaign will address that issue, and all MSPs, in their leadership role within their communities, can contribute to that. If we can achieve a more open discussion of the issues, that will help with anticipatory care planning to ensure that patients who may not have a cancer diagnosis but require palliative care get that care at an earlier stage. It should be recognised that cancer is a life-limiting condition and that we need to engage sooner rather than later.
I thank those who contributed to the report. We will consider its recommendations in detail. The national advisory group is already working on some of the recommendations, and we will continue to look at how we can further improve the provision of palliative care in Scotland as a whole.
Meeting closed at 17:48.