I beg to move

That this Assembly believes that everyone impacted by death, dying and bereavement should receive the care and support they need; expresses its concern that demographic trends in Northern Ireland predict a significant increase in chronic illness and palliative care demand in the years ahead; notes that Scotland and Wales have current palliative care strategies and that the Republic of Ireland’s Programme for Government contains seven clear commitments on end-of-life care; further notes the New Decade, New Approach agreement commitment to invest in palliative care service improvement has yet to materialise; recognises that the care and support available to people as they die has an enormous impact on their quality of life and that each death leaves a number of people bereaved; and calls on the Executive to ensure that the draft Programme for Government outcomes framework includes indicators around death, dying and bereavement and the importance of a good end-of-life experience for people in Northern Ireland.

The Business Committee has agreed to allow up to one hour and 30 minutes for the debate. The proposer of the motion will have 10 minutes in which to propose and 10 minutes in which to make a winding-up speech. All other Members who are called to speak will have five minutes.

I am grateful to colleagues from across the House for adding their names to the motion, which I tabled in my capacity as chairperson of the all-party group on terminal illness. Given its subject matter, I trust that the spirit of collaboration will continue when the Question is put on what is a very serious issue, which will, literally, affect every person in Northern Ireland.

We are told that there are two sure things in life: death and taxes. On one of those, we are in the blessed position to be able to make a significant difference to each and every one of our citizens at what will be one of the most vulnerable times in their existence: when they receive a terminal diagnosis, when they need to make plans, when their life is coming to an end; or when they love someone who is going through those things and they have to face a life with the void of that loss.

We have not all received bad news ourselves — some among us do know that devastation — but we have each grieved and we know the pain and panic.

As the Programme for Government (PFG) plots a way through our lives from birth, with strategies, indicators and outcomes for almost everything, there is one glaring omission: what happens when life is ending? The existing PFG outcomes framework rightly emphasises the importance of giving young people the best start in life and keeping people healthy and active throughout. However, it fails to recognise the end phase of the life cycle and a number of critical points that are associated with that: demographic trends predict that there will be a significant increase in chronic illness and palliative and end-of-life care demand in Northern Ireland in the years ahead; that the care and support that is available to people as they die has an enormous impact on their quality of life; that many groups face inequities in accessing care and support when they are impacted on by death and dying; that each death leaves a number of people bereaved; and that, because of the previous point and the impact of the pandemic, demand for bereavement support will continue to grow.

Unquestionably, the PFG, including the outcomes framework, should recognise and include issues around death, dying and bereavement, and the importance of a good end-of-life experience for people in Northern Ireland. For over a year, we have taken drastic measures to protect life from a virus. We will now have to deal with the aftermath. Those issues have been brought into sharp focus. Embedding them at the strategic policy level is needed now more than ever and is the next natural step.

The local population is ageing rapidly. That trend has been accompanied by growing numbers of people living with multiple chronic and incurable illnesses and complex needs. If we look at the stats, we see that the average healthy life expectancy in Northern Ireland is just 60 years of age. Disability-free life expectancy is worse still at 58 years of age. Those trends have had a significant impact on the end-of-life sector. For example, since 2011, the number of people on the local palliative care register has doubled, while deaths from cancer have increased by 10%, chronic lower respiratory diseases by 17% and dementia by a staggering 65%. Looking ahead, the population of over-85s is expected to grow by more than 100% by 2043, with an associated rise in palliative care demand of over 30% by 2040 — in around 20 years' time. We are far from ready.

Those issues have not been appropriately recognised at the strategic policy level in Northern Ireland. No regional palliative or end-of-life care strategy is in place, with the last strategy, Living Matters, Dying Matters, now six years out of date. Despite a commitment to invest in palliative care service improvement in the New Decade, New Approach (NDNA) agreement, there is no mention of palliative or end-of-life care in the PFG. Northern Ireland is already falling behind its neighbours in that area. Scotland's strategic framework on palliative care has been in place since 2015. The Welsh Government have had a palliative and end-of-life care delivery plan in place since 2017. A new five-year palliative care strategy is being developed in England. The Irish Programme for Government, which was published in 2020, contains seven clear commitments on end-of-life care, including the development of a new palliative care policy and greater research on the impact of bereavement.

It is imperative, then, that the end-of-life challenge in Northern Ireland is recognised and prioritised in the PFG. We need policy levers to ensure that palliative care, which is shown to result in better quality of life, better symptom management and lower rates of mental ill health, is available to everyone who needs it and that the other financial, practical, emotional and spiritual issues that affect people who are at the end of life, as well as their loved ones, are addressed and met.

That would be important under any circumstances, but it is especially so in the context of the recent pandemic. Since the end of March 2020, nearly 170,000 people in Northern Ireland have been impacted by a bereavement. That represents a huge increase in the number of people who require bereavement support, but many of those who have been impacted by the death of a loved one during that period will be living with complex grief reactions that have arisen from the circumstances of the restrictions. For example, one of the consequences of social distancing and visiting restrictions in care settings such as hospitals and nursing homes is that some people did not have the opportunity to say goodbye to their dying loved ones. The ability to say goodbye is associated with better outcomes on measures of depression and complicated grief among bereaved people. The Department of Health's draft mental health strategy acknowledges:

"the restrictions on funeral rites during the pandemic have had an impact on the emotional wellbeing of many".

It is an area about which I feel particularly strongly. Some years ago, I spent three nights and three days with my dad at my gran's bedside in her nursing home as she was dying. I am so grateful for the time that I got to share with them both at that time, because my dad died not long afterwards. I cannot imagine my dad or me having to do that alone: being the only person allowed in, bearing all the responsibility alone, for as long as it takes, and being afraid to leave for a cup of tea, a bite to eat or a shower, in case you are not there when the time comes. I am an only child, and so was my dad, but you could add into that mix having to choose who will be that one person and who will have to be excluded from the funeral. All of that is compounded by knowing of the indignity with which your loved one's remains will be treated should COVID be cited on the death certificate.

Statutory and community and voluntary sector (CVS) bereavement support services were struggling to cope with demand before COVID-19, and it is very likely that the situation has only worsened as a result of COVID-19. The effect of the pandemic on bereaved people will be felt for a long time to come and will require a strategic response from government, working in partnership with key stakeholders. The inclusion of an additional outcome in the PFG framework that is focused on death, dying and bereavement is a must. That additional outcome could be supported by key priorities that are relevant to palliative and end-of-life care issues, as identified by expert stakeholders in the sector. Along with pre-existing relevant indicators, there are further indicators that could help monitor progress on the outcome, such as the number of people on the regional palliative care register and the percentage of the population that is given the opportunity to discuss advanced care planning. I will leave it for others to go into the details and merits of those when it comes to statistics, but we should be enabling such conversations to happen long before people are in a highly charged emotional state, having received a devastating diagnosis. In so doing, we would also move towards removing the stigma surrounding death and dying.

It was superb to see the joint response from so many charities and hospices across Northern Ireland to the Executive's public consultation on the draft programme. I am grateful to all those — there are too many to name — that do so much work in this area, both in policy and in practice. In particular, I am grateful to Marie Curie in my constituency, which worked with me on the motion. Others will mention those in their constituency. I also praise the 10,200-plus people who took the time to sign the Marie Curie petition calling for greater end-of-life and bereavement support to be included in the PFG. Again, I will leave the detail of their comments to others to include in their remarks.

When considering the issue, we need to walk in the shoes of those who are in this situation, and we need to make it better for them. We are in a position, here and now, to make a change for the benefit of every citizen. Is that not why we are here? I urge colleagues to support the motion.

Some Members:

Hear, hear.

I am very pleased to be a signatory to the motion. I acknowledge the work of Marie Curie and of Joanne Bunting, as chair of the all-party group, in tabling what is a very important motion.

Every one of us will agree that those impacted on by death, dying and bereavement should receive the care and support that they need. It is crucial to note that demographic trends predict a significant increase in chronic illness and demand for palliative care in the years ahead. Now is the time to consider how we can address concerns and develop strategies that will lead to a better end-of life experience for people in the North. I recently chaired a research launch event by Marie Curie and Queen's University that outlined how it is expected that, by 2040, there will be a 30% increase in demand for palliative care and how the population of over-85s is predicted to increase by approximately 100%.

If we do not start to make changes now in how we deliver end-of-life care, difficulties will result in the coming years, especially in relation to end-of-life care in the community and capacity issues for care homes and hospices.

I pay tribute to all the health and social care workers in our community, care homes, hospices and hospitals, who have provided support to those most in need over the past year when restrictions have made it difficult for families to provide that support themselves. We thank you all for your work and emotional support in what have been very difficult times for patients and their families and, indeed, for you, their carers. We recognise the impact that it has had and the contribution that you have made.

During the Committee's inquiry into COVID-19 and its impact on care homes, the issue of advance care planning was raised on a number of occasions. Everyone who responded outlined the importance of sensitive and compassionate conversations about advance care planning. It is crucial that these conversations are on an individual basis, are supported by the appropriate professional — ideally, the one who knows the person best — and take into account the unique needs, preferences and changing wishes of the individual. It is also important that these conversations do not happen only once but are an ongoing, dynamic process.

The Committee made a number of recommendations on advance care planning, including:

"The Department of Health should clearly outline and communicate the rights of older people and families regarding end-of-life planning" and

"that relevant professionals have access to appropriate training in advance care planning."

The recommendations were all accepted by the Department, and we look forward to discussing this issue further with the Department.

I want to make some remarks as Sinn Féin spokesperson for health, a Phríomh-LeasCheann Comhairle. I was disappointed with the response that I received from the Department to a question about bereavement services. I think that it will come as something of a surprise to Members and the public. In relation to a question on the commissioning of bereavement services regionally or within the health and social care trusts, it stated:

"The Department for Health does not commission bereavement services regionally or within health and social care trusts."

It went on to state:

"while the public health agency provides funding for various bereavement services, projects and groups across the North, bereavement services within each HSE trust have traditionally been provided by third-sector, community, voluntary and chairtable organisations."

While we all acknowledge and value the work that those organisations do, a more statute-based strategic and commissioning process is needed.

Facing the end of our life, or that of a loved one, is a sad event. However, it is unavoidable and therefore must be planned for. We know our demographics; we know that our population across the island is aging. That will ultimately require practical, emotional and spiritual needs to be addressed as people face the final times of their life. Therefore, we have a duty to prepare. That preparation must take into account the financial resources that we need and the practical and emotional support and assistance needed for families. With all those resources in place, we can — we must, Members — ensure proper symptom management, active and considerate planning and quality of care and choice as we tend and support our loved ones and their grieving families through the end phase of life.

I support the motion, and I urge Members to do likewise.

First, I place on record my thanks to Joanne Bunting for tabling the motion and to Marie Curie, which, I know, has supported her role on the APG.

When the motion was presented to me, I put my name to it without hesitation. As the mover of the motion quite rightly pointed out, it is a glaring omission from our Programme for Government that this issue has not been tackled. It is important that we have the motion and discussion today. I say that at a very poignant time. During COVID-19, the many horrendous stories of people dying without a loved one at their bedside will resonate with all of us, and beyond this House, for a very long time.

The difficulties and situations that we faced, which were, largely, beyond anyone's control, led to the passing of individuals in a way that has traumatised family members because they have so many questions about their passing and how different it might have been if only they had been able to be by their side.

I could not make that comment without putting on record our absolute indebted thanks to the NHS staff, who were there with those people, for the comfort that they were able to offer to the family members, who knew that their loved one did not die alone and that somebody was there and held their hand. That is a huge comfort. To those NHS staff who had to do that routinely, I thank every one of you. I know that that cannot have been an easy task, on top of dealing with COVID and managing those wards.

I thank the Member for giving way. I wholeheartedly agree with her sentiment towards the NHS staff, but does she agree that, equally, our praise must go to those care home staff, who had such difficult circumstances to deal with and who, quite often, were the mediators between the family at the window and the resident in the care home as, sadly, they went through their end of life in an isolated place?

The Member has an additional minute.

I thank the Member for his intervention. He, quite rightly, pre-empted my next comment.

It was not just in the hospital setting; there are people across our community who stepped up, be it in care homes or in their own homes, and they were reliant on the palliative care workers and community care workers. At the outset, I mentioned the Marie Curie organisation as one such example of people who step up and step in to support people at their most vulnerable time, but there are also the hospices and the services that they provide.

In my constituency, the community response to the void in our Programme for Government has seen the creation of Life & Time, which is a charitable organisation that recruits nurses and trains them up. Those nurses then go to the homes of people who are dying and in need of palliative care. An example of some of the amazing work is shown by Deirdre Morgan and Michaela Kane, who recently successfully completed the European Certificate in Essential Palliative Care. They are able to take that resource and go to the homes in our communities, and we are so thankful to them and others like them who help people at that final stage of their life.

We have to recognise that there is a void in strategic policy on this whole issue. The motion is a call to fill that void. I call on everybody to support it, and I do not doubt that everybody will.

It is important that we plan for good end-of-life care. It will not just happen. Like everything in life, it has to be planned for. In the Marie Curie submission, they talked about the issues that we should consider in that planning. They talked about the care register and how a relatively small number of people are on it. I think that they suggested that more than 15,000 deaths are recorded in Northern Ireland in a normal year, meaning that 11,250 people should potentially be on the palliative care register who are not. The actual number during the past five years has been less than half of that.

It is important that we have these conversations, and, as other Members have said, advance care planning brings some element of certainty where there is none. That is a really important conversation and a difficult one to open up, but if it is scripted, planned and prepared for, people can grab the mechanisms and the framework, and use that as their lead to take them through a really difficult, vulnerable time in their life.

In conclusion, I support addressing the glaring omission in the Programme for Government, and I hope that the motion will be the catalyst to allowing the issue of end-of-life care and the bereavement that comes with it to not only be taken seriously and acknowledged but resourced. Again, I thank the Member for tabling the motion.

I support the motion, of course, and thank all those who brought it to the House. Later, my colleague Paula Bradshaw will make a winding-up speech on behalf of the parties that co-signed the motion.

As Benjamin Franklin said:

"In this world nothing can be said to be certain, except death and taxes."

Death impacts every family and every individual, and it is a fact of life. In my past career, I have been a volunteer bereavement counsellor. It is a fact that the better we die, the better the quality of life for the person who is dying and for the people who are left behind. Death is a subject that people find it hard to talk about. Even amongst families, they find it difficult to discuss. It is the one aspect of life that impacts us all, and it is the aspect least addressed in our Programme for Government. Today, I hope that we will redress that issue and that it will finally come forward for consideration.

We need a regional palliative care or end-of-life strategy. As we know, and as Ms Bunting said, Living Matters, Dying Matters is six years out of date. With an ageing population, the doubling of the number of people on the palliative care register and the impact of COVID on the ability to say goodbye, we need to address the issue as a matter of urgency. It is one of the key components of our mental health concerns across Northern Ireland. I know that support services are struggling to cope with demand. They struggled before COVID, but they are struggling even more now. Those support services are the other volunteers and organisations and charities that I know are helping families through a very demanding time. The need for sustainably funded bereavement support necessitates a strategic response from government.

As Ms Bradley said, we can only thank all those healthcare workers who break the news that a loved one is dying. I had the privilege of being alongside midwives as we discussed how to break to a mother the bad news that she was about to be told. Those people break that news, they console, and then they go about their daily work. They are amazing. I pay tribute to each and every one of them.

I welcome the information provided by Marie Curie, which suggests that we add to the Programme for Government indicators to confirm the number of people on the palliative care register and the percentage of the population that is given the opportunity to discuss advance care planning. As we all know, data is the key that unlocks funding, and it is data that enables resources to be invested in key issues and priorities.

For those of us who have been through bereavement, I am very sorry. It is horrendous. We know how important it is to support our loved ones at their end of life and to help those of us who are left behind to be allowed to remember and grieve. I believe that we owe it to ourselves to learn about death at a much earlier age. That is not to scare any young person but to introduce death as a fact of life. Being prepared goes a long way in helping to cope with one of the most difficult times in a person's life. Why does our national curriculum not include the subject of death? Surely we could include a module on death and dying in a subject such as the personal development section of the learning for life and work area. I know that helping people to speak about death, about life and about coping with life during the time before, at and after death can help a family to grieve. It can help the health staff and volunteers on whom we so depend during end of life.

On behalf of all who are going through their end-of-life journey and in memory of all who have died and their loved ones, I ask that we include indicators on death, dying and bereavement in the Programme for Government. It is privilege to support the motion.

When this motion was put forward, I was, like others, very happy to sign it. It reminded me of what I went through 16 years ago, when my father, a healthy man working with me at home on a Friday, went into hospital on the Sunday, with no diagnosis or prognosis to indicate that that was his last journey. It was thrust upon us. My father was in hospital after an operation when we were told the news reflected by the contribution from the previous Member to speak. It was difficult for us as a family, because we had no understanding of it. That was pre-devolution. There have always been shortcomings on end of life. This is not an attack on the current Minister or the Ministers before him. It was pre-devolution.

I remember that my father was transferred from Antrim hospital to what was described locally as the workhouse, which was then in Braid Valley in Ballymena, where he got excellent care from the Macmillan team. That was a comfort to us. Like many patients, he suffered in silence. The nurses went above and beyond in providing excellent care. I had conversations with nurses and asked, "How do you do this job?". We always assume that a nurse is there to help you get better, not to help you pass. The professionalism of those nurses was unquestionable. I remember that, at that time, they were talking about a Macmillan unit in Antrim hospital, which, thankfully, came some years later.

Roll forward to 10 years ago, when my mother went onto a main ward in the hospital and was never to come home. Having dignity is very difficult for a family. My mother spent 11 days on a general ward with six patients and a curtain around her. The family spent precious time with her in the full knowledge that she was not coming home. It was difficult for us. It was difficult for the other families on the ward. Where was the dignity for the other five patients, not just for our family? I ask that because there was a lack of provision. There was, dare I say, competition for accessing the capacity of the 12-bed unit. That is no reflection on Macmillan and the work that it does, but there was competition for those beds. My mother's dignity was removed because she had to die on a ward with five other patients. She was not allowed the close family network that you would get in a normal setting.

I fully support the motion. The call that it makes is appropriate, long overdue and should have been included in the Programme for Government before. It is very touching that everyone signed the motion so easily. We have to bear in our hearts that many people have not gone through this situation and do not understand it. Until people are thrust on that journey of death, are they prepared? Do they know what is going to happen?

Reference has been made to the charities and the work that they do. They have stepped up when people get those diagnoses. Many people survive, but those charities have given them care and support, which is also very important. We need to be sure that all those charities and the service are properly funded.

Another thing strikes me; I remember this from when my mother passed. Like a lot of people, I, in my ignorance, associated end-of-life care with cancer. My mother did not have cancer. I remember the Macmillan nurses being brought to me a few days before my mother passed. I said to the nurse, "But my mother has not got cancer". I was ignorant to the fact that end-of-life care is not just about cancer. Macmillan is not about cancer. Marie Curie is not about cancer.

I remember when they were administering the medication my mother needed a number of days before she died the nurse on the general ward telling us that Macmillan, or it could be Marie Curie depending on the setting, knows the appropriate time to give that level of treatment and that the general staff do not. That is no reflection on them. Again, my view is that they are there to nurse people to get better, not to nurse people to die. The dignity and the care that those people give is unquestionable. It is concerning that some people do not get the opportunity for that intervention. Some people die at home in pain and agony because they never got that level of care. That is shameful.

Reference has been made to taxes and death. That is true. However, I want to say briefly that, before you pay taxes and reach death, there is life. There is also perinatal care, and we are failing there as well. I know that the debate is not about that, but that is an issue that it will be important to come back to. We will never avoid taxes, but, to get to taxes, we have to be born. If we are born, we will have our taxes and our death.

We need to be sure that people and their families are cared for in a dignified manner and that they get the best care possible at that time. I commend the motion.

Like others, I thank Joanne and the all-party group for bringing the motion. I also thank Seán McGeown for his research paper. I looked through it a couple of times.

I agree with the motion wholeheartedly. When I looked at Seán's paper, I also looked at the draft Programme for Government and 'New Decade, New Approach'. There is a lot about life and about helping and supporting people in the Programme for Government. That is the right thing to do. However, there is very little about palliative care, even just in terms of what support is out there as part of health and social care.

As Kellie did, I would welcome an opportunity to talk about dying. I am of an age where I was heart-scared of people dying when I was younger. No one spoke about cancer when I was growing up. People went up the stairs to die. No one talked about it. That is quite horrific when you think about it. My family and I were privileged. My father is dead just four years. It was his explicit wish that he wanted to die at home, if at all possible. I think that, when he said that, we all looked at each other. We did not know what to be prepared for, but, at the end of the day, he lived a good life, and his wish was to have a good death. He was very open about that. The mission statement in 'Living Matters, Dying Matters' is exactly what we, as a family, received. A palliative healthcare team gave us an understanding of what was involved. He received the best and most appropriate care. He, along with the staff, spoke to us about what would happen and what would be expected of us. We also received timely information. He definitely had choices. His care was supported and coordinated through not just a health and social care team and a palliative care team but Macmillan nurses and others. We, as a family, will be forever grateful for that. When I looked at Seán's paper, I felt sorry for the people who did not have that experience. It helps with your grief and bereavement. Working with the team and knowing what to expect, which meant that we were able to cope, helped us as a family.

I looked at the Regulation and Quality Improvement Authority (RQIA) review. I understand why it said that there is a lack of clarity among organisations about how the range of regional structures work and fit together. That is something that we will constantly strive to achieve, particularly given the year and more that we have all come through. Joanne spoke very movingly about the number of experiences of families during the pandemic who did not have what I had. My heart goes out to them. As Trevor outlined, palliative care is not about just cancer. One of my neighbours died of motor neurone disease and had the same palliative care team in and out. Their family was forever grateful as well. That was just before the pandemic. As we, as a community, did for other neighbours whose family members died, we brought bins in, did shopping, made a pot of soup and all that sort of stuff. That goes along with it.

It is also about advice and guidance. That is critical. It is really important that we have that as a Programme for Government target. It is important, as Kellie mentioned and as others have said, that families have as much information as possible and as much support as possible to help those who are dying to get that support and those choices. We had only weeks from when my father was diagnosed until he passed — he had very aggressive pancreatic cancer — but those weeks were filled with information, care and support. As Joanne said, we are people, too. Some people look at MLAs and say, "What would they know?". We do know what it is like. I think that you, Minister, have a coalition of the willing to get that into the Programme for Government. The people who have done all the work to bring the motion to the House and those who support people to have a good death deserve our support. I support the motion.

I thank the Members who brought this most important issue to the Assembly Floor this morning. I particularly thank my colleague Joanne Bunting and, of course, Marie Curie for its campaign on the matter.

Every day, thousands of people, sadly, lose their life due to chronic and terminal illness. While many of those illnesses, such as cancer, get a lot of publicity, one condition that continues to fly under the radar is idiopathic pulmonary fibrosis (IPF), a severe lung condition that scars the lungs and makes it harder to breathe. We do not know what causes the condition, and, at present, there is no known cure for the damage that it does to lungs. People living with IPF see their life turned upside down by the condition, with everyday tasks becoming impossible and exhausting. As the condition worsens and the scarring of the lungs increases, symptoms such as coughing become more common and severe. Through the use of antifibrotic medication and specialist treatment and support, we can slow the development of more scarring, enabling people to live better for longer. After being diagnosed with IPF, the average person has a life expectancy of just three years. That makes it a more deadly disease than leukaemia and some forms of cancer. The only long-term treatment for IPF is a lung transplant. However, due to long waiting lists, many people, sadly, do not live long enough to receive that type of treatment.

Just recently, at a meeting of the all-party group on lung health, which I chair, MLAs heard from Pauline Millar, a South Antrim constituent of mine who is living with the condition. We heard about the real impact that it has had on her life: she had to stop working and has found the support available patchy at best. Pauline is lucky, however, because her condition was diagnosed early, and she is able to access some specialist support. For too many people across Northern Ireland, that is not their reality. With over 1,200 people living with IPF in Northern Ireland, it is a serious issue, and hundreds of people lose a loved one to the condition every year. People should be able to access specialist treatment where they live.

In 2018, the Department of Health discussed overhauling the way in which specialist services were provided for those with IPF, but little came of it. At present, health and social care trusts do not provide specific funding to provide the services needed to support those living with IPF. That creates unacceptable inequalities, as many cannot afford to self-fund services. People living with IPF should not fall victim to a postcode lottery whereby where they live determines the level of support that they receive. We can and must do more to ensure that people get the support that they need, particularly when their condition worsens and they rely on palliative care.

Although my focus today has been on that specific group, that in no way takes away from others who need the same support as they reach their end-of-life journey. We welcome the fact that more and more people in Northern Ireland are living longer, but we must recognise that, with that, many will face that point and need specific care, including end of life.

As the motion notes:

"the New Decade, New Approach agreement commitment to invest in palliative care service improvement has yet to materialise".

I therefore urge Ministers from all parties to make progress on that commitment, which was made to all of the people of Northern Ireland on the restoration of devolved government.

The pressures brought by the COVID-19 pandemic have caused much pain and suffering for many families. Many were unable to see their loved ones in their final weeks and days or, because they obeyed the Government safety restrictions on gatherings, pay their respects at funerals. End-of-life care should also have a strong focus on the families, who are often affected not only emotionally but financially.

In finishing, I put on record my sincere gratitude to all members of our health service, the hospices, the charitable organisations such as Marie Curie and the other care providers that have looked after loved ones under the most difficult of circumstances in the last year.

Now is the time to drive forward a new progressive vision for improving and enhancing our end-of-life palliative care provision and support in Northern Ireland. That will take serious investment and health transformation, but we owe it to all of our citizens. I support the motion to include such a vital topic in our Programme for Government. Let us work together to ensure that we support everyone living with and affected by a terminal condition.

As other Members have done, I thank Joanne for bringing the motion to the Assembly today, and I welcome the opportunity to speak in support of it. Thank you for that.

The issues around death, dying and bereavement deserve to be treated with the utmost respect and compassion, and, through their remarks thus far, Members have all done that justice in today's debate. At some point in all our lives, we will face the illness and end-of-life care of a loved one. With that in mind, we need to make decisions on how end-of-life care should happen. When faced with the inevitable responsibility of caring for and supporting a loved one as they die, we need to ask what we would like to happen. Of course, we want to see our loved ones free from pain and discomfort and ensure that their financial, physical, emotional and spiritual needs are addressed as they face the end of their life.

Living through that real-life experience and even just having to undertake those conversations and decisions is really challenging and traumatic for any family to go through. Members have expressed that in the Chamber today. Many of you have endured that difficult journey through the process of losing loved ones from your family. My Uncle Jodie lost his battle with bone cancer a number of a years ago. He was still in his 40s when he died. Only a number of weeks ago, my cousins buried their father after a really long and difficult fight with motor neurone disease. Both of them were still so young when they passed away, and both battled with life-changing and painful diseases. As a family, you can only witness and watch the people whom you love gradually slip away, and, at times, you feel powerless to help them. It is really important that the needs of people of all ages who are living with dying, death and bereavement, including the families and the carers involved, are addressed, taking into account the preferences of those people and their wishes, because every family and every circumstance will be different.

As Kellie and Carál mentioned, bereavement supports are a vital part of palliative care. In many cases, it is only when a loved one has died that the family has that space to feel the impact of the loss fully, and it is usually then that they need that emotional support most of all. As part of the recent mental health consultation, we in Sinn Féin called for a specialist bereavement service to be established, even if it is on a regional basis, because we know that specialist services such as bereavement services are a necessity to help to support the families and carers, who, sadly, a lot of times, can be left to navigate the situation and learn how to cope by themselves.

It is my belief that we can go further and should consider the establishment of a psychological autopsy service, particularly — this is a bit more specific — for those who have been bereaved by suicide, who will have many unanswered questions about a loved one's death and whose grieving process is even more complicated by the effects of the stigma and trauma around people who die by suicide. That process could act as an additional avenue of support and could develop into a system of learning around the difficult and complex issue of someone who has completed suicide and died.

I will finish by taking the opportunity to join other Members in acknowledging the significant work of all our voluntary and statutory organisations that are providing those bereavement services at present and doing much more. Once again, I emphasise and support the need for enhanced investment in those sensitive services, which are doing their very best to help people at the most difficult points in their life. I am happy to support the motion.

Thank you, Joanne, for tabling the motion. I was not going to speak today until I listened to the unity of purpose that we all have. Later today, we will have a debate on antisemitism. That brings me to the Jewish faith, which has a prayer:

"May you see your children's children."

For some of us who reach my age, however, that can be difficult. I think of a young boy, Charlie Craig, who passed away about a year and a half ago in Lisburn. I think of how he suffered and the care that he got. My friend Carmelita, who will not mind me using her name, is an educationalist in the hospital. Little Charlie went to St Joseph's Primary School. They built his little toys in the playground for the kids. The school always tried to remember him and to bring him into the class setting.

The nurses, the doctors and all others who are there make the end of life so special. I know that everyone has spoken of their experiences of death. I remember my father saying that he had lost his brother, who was blown up off the coast. He lost one of his sons, who was killed in an accident, and he lost his eldest grandchild, who drowned. All of that is the experience of life, and death is part of life, but we need to give that care. That care can be given so gently with a caring hand or a kind word from our nurses, who make it so dignified when it comes near the end, when we are there to say goodbye to our loved ones — to our mothers, to our fathers or to our brothers — as life would have it. When death comes, there is so much knowledge that leaves us and so many questions that we have not asked, but we are given that little bit of time. When I was young, I probably did not realise what it meant, but there was a prayer that was always said:

"May you have a happy death."

It is very strong in my faith. I did not know what a happy death was then, but I know now.

To Joanne and the other Members who signed the motion, thanks very much. I hope that, with help, we can make end-of-life outcomes part of the Programme for Government, if that is at all possible.

In listening to some of the very personal testimonies today, I am mindful of the fact that a number of people listening in today across Northern Ireland will be going through that very process at the moment. In my time on the all-party groups that we all sit on, I have become aware of an excellent charity and facility that people need to be aware of: Cruse Bereavement Care. To anyone who is listening in or who wants to pass on their details, I say that it is important that they reach out for that help and know that it is there. As we know, bereavement can have a serious effect on all of us.

I welcome the motion. I thank Ms Bunting and all the other co-signatories for tabling it. It was a pleasure to sign it, for the purposes of the debate. There are more than two aspects to it, but two jump out at me. One is to protect the dignity of the person who is dying, and the second is to support the living. Every one of us will experience death in some form or fashion, whether through managing the bereavement of someone else or when it comes to us. I hope and pray that we are in a position to do so with dignity.

I thank the palliative care community, as others have done and, I am sure, everyone else and the Minister will do. While this is missing from the Programme for Government at the moment, we are all of one voice when we say that there are professionals and volunteers out there who are providing the pathways as we speak. Whether that is in a hospital, a hospice or a community setting, our nurses, doctors, health professionals, care staff and many dozens, if not hundreds, of volunteers are absolute heroes for what they do. I particularly thank the policy team at Marie Curie for providing the support for today's motion.

I have to declare an interest, Mr Principal Deputy Speaker. I often blow about my wife a little. She is a nurse, but she also is a palliative care nurse. She worked for Northern Ireland Hospice, although she does not work there now. When I ask her what her favourite role as a nurse has been, she says that it was in the hospice. She epitomises the people who are called to work in those places. I used to ask why that would be. It is the most personal journey that you could ever have. Birth and death: those are the two journeys that you can go with someone on that will bring you closer than anything else. My hat goes off to those nurses.

Death will affect everyone. Therefore, the omission, if we can call it that, of end-of-life outcomes from our Programme for Government is an anomaly that needs to be addressed. It must be addressed as soon as possible. As we have said today, it is not within the purview of the Minister of Health alone. There are fiscal and financial, educational and community aspects.

I think of something that we have talked about a lot in the Chamber since we came back. We have paid tribute to a number of former Members, and that has been hard. As the Member for Lagan Valley outlined, this is not just a matter for the elderly. You have only to go to the Children's Hospice, paediatric care, the Cancer Centre or any of those places where we have young people on that palliative journey. That is incredibly tough.

We often talk about stigmas and taboos, and cancer was one of them. When my grandparents were alive, you could not have used the word. When my grandfather was ill, we were pretty certain that he had cancer, but he would not go for tests and you could not mention the word. "Mental health" is another one. We know that, because we talk about mental health quite a lot now, but we are still breaking down the barriers and the stigma attached to it. However, death is the one that will come to us all. We may not all suffer mental ill health, cancer, heart disease or any of those things — I pray that you do not — but we will all die, as will all those we love. Therefore, there is an omission from the Programme for Government. Trevor Clarke talked about that. It is nobody's fault. It is not a political thing, and it is not the former Minister's fault. However, we need to address it, and it is our job collectively to do that.

I have one final thing to say. Kellie Armstrong touched on it, and it is the impact of death. I had a private Member's Bill out for consultation, which has since closed. It is about addressing post-traumatic stress disorder in emergency responders. Reading through the findings of the consultation, one thing jumped out at me: how hard it is to deal with death. In particular, police officers responding to the consultation have written about how hard it is when they have to go to someone's door to report a death. I also think of the nurses, the doctors or the care staff who have to give that news and the impact on them. Therefore, this is something that I would like to see included as a Programme for Government outcome.

The Ulster Unionist Party will support the motion.

No other Members have indicated that they wish to speak. Therefore I call the Minister of Health, Mr Robin Swann, to respond. Minister, you have 15 minutes.

I welcome the debate, brought by Joanne Bunting and sponsored by an all-party group, because it gives the opportunity to highlight the importance and value of palliative and end-of-life care and bereavement support. I respond to what is a call to the entire Executive.

I thank the palliative care community and bereavement support providers for the flexibility, resilience and dedication that they have shown during the COVID-19 pandemic. They have worked tirelessly to plan and provide holistic and person-centred treatment, care and support for those living with palliative and end-of-life care needs and those who are important to them. They have ensured that, despite the many challenges of the past year, essential palliative care services, advice and medicines have continued to be available. They have also been there to support and care for those who have experienced the loss of a loved one and whose grief has been compounded by being separated from family and friends.

The motion includes a call for the inclusion of dying, death and bereavement in the Programme for Government and emphasises the importance of a good end-of-life experience. Many in the palliative care community have highlighted their concern at the exclusion of palliative and end-of-life care and bereavement from the draft outcomes framework. I agree that the exclusion is an anomaly that needs to be addressed. I do not believe that anyone in the Chamber thinks otherwise, and I commend those who have highlighted the need for dying, death and bereavement to be an integral part of our Programme for Government.

I want to assure Members that I, my Department and my party support the correction of that omission so that palliative and end-of-life care and bereavement support are an intrinsic part of our Executive's collective vision to support all our citizens from the start to the end of their lives.

The rationale for that is very clear. As has already been said, our population is ageing: in 2019, the number of people aged 65 and over increased by 2·1%. Projections indicate a continued ageing population. The number of people aged 65 and over is projected to grow by 25·1% by mid-2028. The proportion of the population aged 85 and over is projected to double by the middle of 2043. The population need for palliative care in Northern Ireland is predicted to increase by 31% by the year 2040. There are approximately 16,000 deaths each year in Northern Ireland, with an average of five people assumed to be significantly impacted by each person's death. I welcome the input of the 10 contributors to the debate today, all of whom are members of the Executive parties, which were the authors of the Programme for Government. I encourage them to raise the issues and the anomaly with their Executive colleagues so that it can be addressed.

While the statistics underline the evidential need to include dying, death and bereavement in the Programme for Government, importantly, how we care for people who are towards the end of life and how we support people in bereavement is a measure of our compassion as a society and of how we value our fellow citizens. The mover of the motion outlined how the draft outcome framework, rightly, highlights the importance of giving every child and young person the best start in life, encouraging and supporting people to enjoy long, healthy and active lives, and of fostering a caring society that supports people throughout their lives. However, the importance of care and support towards and at the end of life must also be recognised. The effects of illness, disability, age or frailty, loss and bereavement are shared experiences that make up our common humanity, and the way in which we respond must also reflect that.

We need to recognise the universality of those life experiences as we develop a vision for the future of our society and for our citizens. Access to quality palliative and end-of-life care and bereavement support when it is needed is what we would wish for ourselves and for those who are important to us. As has been stated, in 2010, my Department published 'Living Matters Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland'. There has been significant progress over the past decade since the strategy's publication. The palliative care in partnership programme, which has been co-led by the Health and Social Care Board and the Public Health Agency, brings together a range of stakeholders from the statutory, independent and community and voluntary sectors to support the development and improvement of palliative care services for adults in Northern Ireland. That partnership has been a driving force in supporting high-quality palliative and end-of-life care, irrespective of a person's condition and across all care settings. It has extended education and training in palliative care across health and social care, including in care homes. It has worked with general practice so that people with palliative care needs are identified earlier, supporting timely intervention and the better coordination of treatment and care.

Together with Marie Curie, the partnership has supported the development and roll-out of a rapid response service to provide out-of-hours support for people with palliative and end-of-life care needs in their own homes. It has also developed a role description and competencies for a palliative care key worker, typically the district nurse, for those who would benefit from a palliative care approach. Through the ambition and actions of the palliative care in partnership programme and its member organisations, collectively and individually, there has been real progress in how we design and deliver palliative and end-of-life care in Northern Ireland.

However, there is a growing recognition that dying, death and bereavement are not just matters for Health and Social Care. They are societal issues that require a societal response: in effect, a public health approach to palliative care that draws on the expertise and experience of the wider community, working in partnership with Departments and other organisations.

My Department is leading a programme of work to develop and implement a public health approach to palliative care that recognises the role of society and community in enabling and supporting people with life-limiting conditions, and those important to them, to live well with flexible, holistic and person-centred care based on positive and collaborative partnership.

There are three key strands to this approach: first, increasing public awareness, understanding and discussion of palliative and end-of-life care; second, creating and building on the role of communities in supporting people living with life-limiting conditions and those important to them; thirdly, encouraging people to think and plan for their future physical, emotional, social, financial and spiritual needs as part of that holistic approach to advance care planning. That is appropriate at any stage of life. As part of that approach, we must all be part of a society-wide conversation that helps to destigmatise not only dying, death and bereavement but also palliative care, so that we can be clear about how palliative care can support a good life as well as a good end-of-life experience.

There are many misconceptions about palliative care, and Mr Clarke and Ms Ní Chuilín mentioned some of those, such as the belief that it is only for people with cancer, that it means that nothing else can be done or that it is only for the final weeks or days of life. We need to be clear in our message that palliative care is for anyone living with a life-limiting illness. We also need to emphasise the holistic nature of palliative care in addressing people's social, emotional and spiritual needs. It is about helping people not simply to live with their illness, but to live well, whether that be for years, months or weeks.

As part of the public health approach, work is progressing to develop an advance care planning policy for adults in Northern Ireland. Advance care planning focuses on what is important to a person in their life and, if they become unwell, what will be important and what they will prioritise in the future. Although traditionally driven by the palliative care community, it is relevant at any stage of life and provides the opportunity for people who wish to do so to think about their present and plan for their future.

We know it is important to people. In 2016, 68% of respondents to the Let's Talk About research by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) said that:

"planning for the future was their biggest practical worry."

However, that is not something that many of us do. A recent research report by the University of Ulster, 'Where Are We Now?', found that whilst 28% of respondents had heard of the term "advance care planning", only 7% had engaged in that conversation. Despite that, four fifths of respondents felt it would be comforting to know that their family knew about their wishes. I encourage everyone to think about advance care planning. Speak to those who are important to us and those involved in our care about our wishes, feelings, beliefs and values. If we take the opportunity to make choices for our future care, then, if the time comes, those choices can help inform and support good palliative and end-of-life care.

I also want to acknowledge the work that has been progressed to support palliative care for children, which was raised by Mr Catney and Mr Butler. It is underpinned by my Department's 10-year strategy for children's palliative and end-of-life care and is led by the paediatric palliative care network, and good progress has been made to implement that strategy. That includes the commissioning of a needs assessment for children's palliative and end-of-life care, including those with life-limiting conditions. Work is at an advanced stage on the development of a regional antenatal and perinatal palliative care pathway.

That work will develop a rapid discharge pathway to facilitate choice in the child's place of death and to raise awareness of the role of the medical needs of children's palliative care in each trust.

Unfortunately, over the past year, many people in our community have had to deal with the loss of a loved one. I know how profound the impact of bereavement can be, particularly during the pandemic, when the loss has been coupled with the pain of separation and when the support and comfort that would normally come from being with others has been curtailed by the restrictions. In April 2020, the COVID-19 Northern Ireland bereavement care work stream was tasked with producing a report on the needs of the bereavement service that arose during the pandemic. From that, a number of recommendations have been made on how bereavement care and support might be improved. I am pleased that a new, broader Northern Ireland bereavement network is being set up with representation from a wide range of organisations, including Health and Social Care and cross-departmental and community organisations and agencies. The new network will take forward the recommendations in order to improve bereavement care and support in Northern Ireland.

COVID-19 has changed the way that we go about our daily lives. It has also changed how we think about and see the world. Many people now have a keener recognition of the things that are most important to them. There is evidence to suggest that that is also the case in how people are thinking about palliative care. A survey in July 2020 that was commissioned by the All Ireland Institute of Hospice and Palliative Care found that, due to the COVID-19 pandemic, 64% of respondents reported that they had been thinking more about death and dying than before. The same percentage stated that the pandemic had increased the importance of discussing palliative care if they or someone important to them had a life-limiting illness.

I hope that, as we set out our vision for our future society through the Programme for Government, we collectively recognise the responsibility that we have to ensure that good palliative care, end-of-life care and bereavement support are intrinsic to that. I support the motion.

I call Ms Paula Bradshaw to make a winding-up speech on the debate. The Member will have 10 minutes.

I thank all the contributors, including the Minister, for being here, and I thank Marie Curie and others for doing so much to inform our discussion.

I will go through some of the contributions from Members. We started with the Chair of the all-party group on terminal illness, Ms Joanne Bunting, setting out why we are here today and saying that the Programme for Government fails to recognise the end-of-life cycle and how it is becoming more important to cater for the increasingly complex needs of our changing and growing older demographic. She thanked those who sat at the bedsides of people who were dying during the pandemic when their loved ones were unable to be there. Colm Gildernew, the Chair of the Health Committee, also referenced the work of the health and social care workers not just in our trusts but in our hospices and care homes, and he acknowledged the sterling role that they played during the pandemic. He touched on the need for advanced care planning to be sensitive and compassionate, and said that conversations need to take place over time. They need to be dynamic, because people's needs and wishes change as they move through their illness. He talked about the need for the commissioning of bereavement services and the burden that is on the community and voluntary sector in providing that support.

Sinéad Bradley very much welcomed the motion and talked about the glaring omission of palliative and end-of-life care from the Programme for Government. She thanked the health and social care staff for providing support to people in their final moments who otherwise would have been alone.

Kellie Armstrong talked about how death impacts everyone and mentioned her role in bereavement counselling. A key point that she made was about the care that is provided to new mums who may be bereaved and the role of bereavement midwives in that. At the all-party group meeting that many of us, including Órlaithí Flynn, were at last week, we talked about the role of the new bereavement suites in many of our trusts. Those are quiet places for people to regroup away from the busy maternity wards, where people are welcoming their new healthy babies.

Trevor Clarke spoke about his father's death and how that had been thrust upon his family in very quick time. I think that he mentioned that he had gone in for a routine operation. He spoke about how the family had to adapt very quickly to his passing. He also referred to his mother, who was on a ward in her final days. My mother died from cancer in the Mater Hospital, and we were lucky that she had her own room. My family is big, and we were almost playing tag teams to visit her, so it was very comforting that we had that private space. People's experience can be very different. Trevor Clarke and Carál Ní Chuilín also acknowledged that palliative care is not just about cancer but about conditions such as motor neurone disease.

Carál Ní Chuilín thanked Seán from the Assembly's Research and Information Service. I agree with her. The papers that we received in advance of the debate were very good. She talked about how her father had wanted to pass his last days at home and what was called "a good death". Carál said that she appreciated the support that the palliative healthcare team had provided, not just to her father on his choices but with the advice, guidance and information that her family received at that time.

The Deputy Chairperson of the Health Committee, Pam Cameron, who is also the chair of the all-party group on lung health, talked about idiopathic pulmonary fibrosis, which all of us at the all-party group heard about recently. My takeaway from that was that palliative care might be needed over many years, in contrast to the very short-term interventions that Mr Clarke spoke about. Pam Cameron also made the very important point that the five parties in the Executive signed up to a commitment to investment in palliative care in 'New Decade, New Approach'. We gave that not just to the Assembly but to the population in Northern Ireland when we restored this place.

Órlaithí Flynn talked about palliative care being not just about health support but about meeting physical, emotional, spiritual and even, potentially, financial needs at the end. She also shared stories of her family's personal circumstances and said that, when someone passes, they sometimes leave behind a young family, who have very particular needs in processing that at a young age. She spoke about the need for specialist bereavement services and mentioned a specialised psychological autopsy service to support families who have been bereaved through suicide.

Pat Catney talked about the unity of purpose in the Chamber and shared that lovely Jewish prayer with the line:

"May you live to see your children's children".

He also mentioned Charlie Craig. I thank him for that, and I will pass on his sentiments to Charlie's parents, Cliodhna and Fintan. They are friends, and, as he mentioned him, I recalled that my husband, Ian, who is a mad linguist, was providing wee Charlie with French lessons in his final months. We have to remember that those young people, or anybody else, are still living, still want to learn and still have a thirst for life. Ian told me that Charlie's younger sister used to pop in and out of the room and that there was a wee bit of fun. The palliative stage does not just have to be about healthcare visitors arriving. It can also be about still living your life through it all. Sorry, I am getting emotional.

Robbie Butler talked about the role of Cruse Bereavement Care and said that people who are listening in should reach out because there is support there. He recognised that hospices are not just about health and social care staff and recognised the roles played by volunteers and those who do the fundraising. He also recognised the role of his wife in providing palliative care and working in hospices. Again, he said that it is not all about sadness. It is also about living and families coming together at that time.

Robbie also spoke about his research for his private Member's Bill on post-traumatic stress disorder and that he had found that people are involved in the process whether they are in the Police Service, the Ambulance Service or other bodies. There can be very tough discussions with families at the end of life.

Finally, the Minister thanked those who work in the health and social care sector for their role during and before the pandemic. He very much agreed that palliative care should be in the Programme for Government and that its exclusion is an anomaly. It should be in there. It is an omission that needs to be addressed. He recognised that there are five parties in the coalition and that it is not just for the Department of Health. There should be a cross-societal response, and it will require cross-departmental support.

The Minister also talked about the Department of Health's palliative care strategy. Recently, the all-party group on terminal illness received a great presentation from the Palliative Care in Partnership programme on its wide range of services and support. Generally, we do not see the wide breadth of that work, so it was a real privilege to hear about it. I am glad that it continues to develop.

That concludes my commentary. Again, I thank everybody who contributed. I put on record my thanks to Marie Curie, the Northern Ireland Hospice and others for the sterling work that they do every day of the week and year.

Before I put the Question, I say to the lady that there is no shame in showing emotion in a debate like this. It demonstrates how much you care. You should not be embarrassed.

Question put and agreed to. Resolved:

That this Assembly believes that everyone impacted by death, dying and bereavement should receive the care and support they need; expresses its concern that demographic trends in Northern Ireland predict a significant increase in chronic illness and palliative care demand in the years ahead; notes that Scotland and Wales have current palliative care strategies and that the Republic of Ireland’s Programme for Government contains seven clear commitments on end-of-life care; further notes the New Decade, New Approach agreement commitment to invest in palliative care service improvement has yet to materialise; recognises that the care and support available to people as they die has an enormous impact on their quality of life and that each death leaves a number of people bereaved; and calls on the Executive to ensure that the draft Programme for Government outcomes framework includes indicators around death, dying and bereavement and the importance of a good end-of-life experience for people in Northern Ireland.

If Members wait for a few moments, we will change the personnel at the top Table. Take your ease, please.

(Mr Speaker in the Chair)