Oireachtas Joint and Select Committees
Thursday, 7 November 2013
Joint Oireachtas Committee on Health and Children
End-of-Life Care: Discussion (Resumed)
I thank everybody for being here. I remind those in the Gallery, as well as the witnesses and members of the committee, that mobile phones should be off or in aeroplane mode as they interfere with the broadcasting of proceedings. I welcome our witnesses to this session of end-of-life care hearings. They are Dr. Maeve O'Reilly, Ms Julie Ling, Ms Sinéad Moran, Ms Caroline Thomas and Ms Bríd Carroll. I thank those present in the Gallery at this early hour for their presence and interest in these hearings.
Today is a continuation of our end-of-life care hearings; this is session four and session five will commence at 12 p.m. This session will run from 10 a.m. to 11.45 a.m. and I thank everybody for their co-operation in the preparation of the meeting. Many people would have liked to be able to speak for longer but we must have time limits in order to facilitate discussion. I ask witnesses to confine their contributions to between five and six minutes. Before commencing I remind people that witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by it to cease giving evidence on a particular matter and continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected to the matters under discussion should be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against a person or an entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.
Before commencing I note apologies from Deputy Caomhghín Ó Caoláin, who is absent this week, and Deputy Sandra McLellan, who is in the Chamber because of Question Time. Deputies Mary Mitchell O'Connor and Catherine Byrne and Senator Colm Burke have had to leave but will return later. We have had three excellent sessions so far and the committee has been privileged to hear testimony from so many expert witnesses who have given honest appraisals and a tremendous insight into the issue we are discussing. Dr. Maeve O'Reilly is the consultant on palliative medicine at St. Luke's Hospital and our Lady's Children's Hospital at Crumlin.
Dr. Maeve O'Reilly:
I thank the Chairman and all the members of the committee for the invitation to speak today. My background is in adult palliative medicine but as part of my post, 12 years ago I was asked to set up the first children's palliative care service, which I did in Crumlin. That was in response to the National Advisory Committee report recommendations that children were not like adults and needed to be addressed separately.
It is fair to say the death of a child is probably one of the greatest tragedies that can befall any family and consequences on parents, remaining siblings and the extended family can be profound. For families living with a child with a life-limiting illness, there are significant challenges on a daily basis; these are not just physical but they are emotional, psychological, financial and spiritual. At its core, children's palliative care relieves suffering for a child and improves quality of life for the child, whatever length of time he or she has. It is a focus on living rather than dying. As part of what we do we try to support families with the challenges they face daily, facilitating them in helping to make decisions, which can be difficult throughout a child's illness. We insist on co-ordination between services, hospitals and the community. End of life care for these children is just a part, albeit an important part, of what we do.
Language is important as we are talking about children with life-limiting illness. By this we mean children born with or who acquire an illness where they are unlikely to live beyond childhood or into early adulthood. Hundreds of those illnesses have been identified, ranging from incurable cancers to severe brain injury. They have in common the need for palliative care, and such care needs will fluctuate throughout an illness. Many children will be fine for much of the time and would be managed with generous palliative care by GPs and public health nurses. At times they will become unwell and need level 2 palliative care, which comes from paediatricians or local hospitals. Some of these children would need specialist palliative care services, and it is estimated that approximately one in five children with a life-limiting illness at any one time would benefit from specialist palliative care if it were available. We would like a comprehensive responsive service, which should have a broad range and depth of skills available to children to meet their needs.
It is important to understand that children are not mini-adults. In the past few weeks the committee has heard about adult palliative care and that is not directly applicable to all children. For a start there are fewer deaths, at approximately 370 life-limited deaths per year, and children often have very rare conditions, which makes care challenging for the people looking after them on the ground. Importantly, these children can live for many years, unlike adult counterparts, and they often experience episodes of deterioration. Some would say these children die several times before they reach end-of-life care, and services need to be able to respond to that intensity of need when it happens. Another big difference is that children are continuously developing physically, emotionally and cognitively, so a child who develops an illness at two would have very different needs from the same child when he or she comes to die at eight or nine. The services must be able to meet those needs.
Much work has been done and a policy outlines what we should be doing and how it should be done, along with the timeframe. That should be the blueprint for the development of services. In a nutshell, we must recognise that when we are planning our services, we cannot look at the number of deaths, as that does not reflect need. We must consider the number of children living with life-limiting illnesses, and we now know that previous estimates are a significant underestimate, with at least three times that number living with life-limiting illnesses. We need a database, which is not currently in place, although it is being worked on. Without knowing the numbers of children and where they are, it is very difficult to plan services, and we must consider how they overlap with disability services.
Human resources are key and one cannot have a specialist service without people trained to deliver care. The current outreach nurse posts and consultant - one paediatrician working full time in the country - are being 85% funded by the Irish Hospice Foundation over a five-year period. That is not sustainable in the long term and the positions must be State-funded. The service must also be expanded, as the recommendation in the report of one consultant and eight outreach nurses is only a start rather than the defining number. In the UK the recommendation is for one paediatrician in the area for every four adult physicians. We have 34 adult physicians and only one paediatrician, so we are already under-resourced in that regard. We see the need on a daily basis, with children from other children's hospitals being referred that we cannot reach. We need more consultants and outreach nurses, and must also further develop the team at Crumlin. This does not have to require much money, as staff already looking after these children can be upskilled in order to bring expertise to a desired level.
Children with life-limiting illnesses by and large wish to be cared for at home, although it is not always possible or desirable. It is what most families want but there is still inequity in the services delivered to children. Children with cancer have a more easily accessible service than that available to children with non-cancer diagnoses. We need to be able to ramp up support to those families with non-cancer diagnoses in order to help them care for the child through to end of life. We must give the families real choices, as for some of our families, home is not the desired option, and that is no fault of their own. They need a real choice of either hospital or hospice if available and if that is where they want a child's end of life care to happen. We must acknowledge that we are still heavily dependent on the voluntary sector to deliver care and we must work in collaboration to deliver a seamless service. We are working in that regard but the effort is ongoing.
Nelson Mandela stated that there can be no keener revelation of a society's soul than the way in which it treats its children. We have done much and a lot has been achieved but there is much left to do. If we focus on the Department of Health policy and stick to the guidelines and recommendations in it, we will improve the position for all our young patients and families.
I thank the witness for her contribution and the excellent written submission. I remind members that written submissions are available in the packs and they are worth reading. They are a substantive body of work and they will form part of our committee report. Ms Julie Ling is head of strategy development at LauraLynn children's hospice.
Ms Julie Ling:
I thank the committee for the opportunity to come here to speak on behalf of LauraLynn children's hospice.
It is reassuring that Dr. O'Reilly and I have very similar notes on what we are going to say this morning. That reflects the fact that we are a cohesive group. We know what is going on in children's palliative care and we know what needs to be done. The final point she made about being cohesive and working together is the way to get things done. There is a lot of goodwill and work between voluntary and statutory bodies to provide the best care for children. Unfortunately, that does not seem to be getting out there.
I am new in LauraLynn and before that I worked in research with children with life-limiting conditions. When talking to their parents it becomes very clear that we do not meet their needs. Most parents have to live with huge uncertainty. As Dr. O’Reilly mentioned, many of them have seen their child die not just once but twice and maybe ten or 15 times. Children need the same level of end-of-life care whether they die or not, and when they eventually die the parents are then left bereft and cannot believe their child has finally died. Children’s palliative care is very different from adult palliative care. We must talk more broadly than just about end-of-life care; we must talk about palliative care. I respectfully urge the committee to refocus on palliative care.
Home is the location of choice for parents for care and for the death of their child. One might wonder about the purpose of LauraLynn’s children’s hospice. Some families cannot care for their child at home and if they do they often need respite and support. That is the bit that is different from adult palliative care. The parents are often young and have other children. They need to have support in the community and to be able to have time to themselves to do things we all take for granted, such as going to Tesco and having their hair done. Those parents do not get that time. They are the primary carers, most frequently the mother. Often in these hard economic times the mother has given up work to look after her child full-time, so economics comes into play. As home is the location of choice LauraLynn Children’s Hospice is listening to what is being said. We have an inpatient unit with eight beds which was built solely from fund-raising. It cost a total of €5.5 million and it costs €2.4 million to run every year. Unlike our counterparts in adult palliative care, we receive no State funding. We provide respite care and end-of-life care, symptom control and transitional care from hospital in order to get people home. We are also looking at providing LauraLynn At Home, a hospice-at-home service that will reach out into the community and will complement the work of our colleagues at the Jack & Jill Children’s Foundation and the HSE services that exist. We hope to pilot the service next year.
We also recognise that there are simply not enough qualified staff. If we were given €5 million tomorrow, there are not enough people there with the skills to provide care. We need to grow our own - we must develop staff and put people in places to get experience. As so few children die, we need to look at ways to improve the skills of staff in caring for children. It is a very specific area of care. We have developed an education and research department and we provide courses for parents and health care professionals in experiential learning. There is a diploma in Galway to which LauraLynn Children’s Hospice has links. The way forward is to collaborate and for all of us to pull together to provide the care.
One of the recommendations of the report was to set up a national development committee. Dr. O’Reilly has brought a copy of the report with her. It is a really good blueprint for the future. If we all stick to that and work together we could have a really good palliative care service for children. The key message is that we need to work together. We need to look at end-of-life care as only one component of children’s palliative care. We need to respond to parents’ needs and develop services to meet their needs. We need to have a cohesive approach. I reiterate that the LauraLynn Children’s Hospice receives no State funding.
I thank Ms Ling. I welcome Ms Sinead Moran and Ms Caroline Thomas and thank them for being present. They are both senior liaison nurses with the Jack & Jill Children’s Foundation. I invite Ms Moran to make her presentation.
Ms Sinead Moran:
On behalf of Jonathan Irwin, the CEO of the Jack & Jill Children's Foundation, I thank the committee for inviting us to make a presentation. We are here to talk about specific cases involving end-of-life care and the care we have provided for families. The Jack & Jill Children’s Foundation is a unique model that has been running for 16 years. We provide end-of-life care for children and families in the home. The model embraces the whole family.
I will refer to statistics we have compiled. We have kept information on families since 2010, including the number of referrals we have received, what percentage of the children died and where they died. Since 2010 we have received more than 510 referrals. Of those, 133 children have died, some of them at home. Sixty-one were specifically referred to us for end-of-life care or palliative care. A total of 47 of the 61 children have passed away and eight are still currently receiving palliative care. A total of 14 children died in the first week of life, six within the first month of life, 22 within the first year of life and five after reaching one year of age. Six of the children were taken off our books because their conditions improved and they no longer required palliative care. The remaining 72 of the 133 children, as indicated by Ms Ling and Dr. O’Reilly, were referred initially to the Jack & Jill Children’s Foundation for respite at home but due to the fragile nature of their health their conditions worsened and they made the transition to end-of-life care at home.
I ask committee members to remember that 60% of the children we looked after died at home, compared to the national average of 11%. People want their children to die at home. That is stated in the national policy from 2009. However, there must also be a choice involving hospice care, as home care does not always work for parents.
Patients with more than 100 different diagnoses have been referred to the Jack & Jill Foundation. The research was carried out with Trinity College in the past two years. Some of the conditions include trisomy 18, which is Edwards syndrome, spinal muscular atrophy type 1, and inclusion-cell disease.
What is unique about the Jack & Jill Children’s Foundation is that we do not have a waiting list. If a family makes a decision today to take their child home to die, we will have a nurse in the home within 24 hours. A total of 11 liaison nurses cover the Twenty-six Counties. We provide in-home nursing care ourselves. We do the hands-on work, including in the evenings and at weekends when no other services are available. We are one of the only out-of-hours paediatric nurse service providing hands-on care in the home.
We facilitate the allocation of funding from the Irish Hospice Foundation and the HSE for extra nursing care in the home. That sometimes happens because the Irish Cancer Society does not have qualified paediatric nurses to carry out hands-on care. Sometimes it can take time for the HSE to come on board with a home care package, and these children might die in the meantime. The funding is given to us to ensure that the same nurses are looking after children.
We provide an on-call service as necessary. Some of our nurses have gone out at 12 midnight and 2 a.m. when families are in distress when their children are at the end-of-life stage. We listen and help co-ordinate parents’ wishes. We also liaise with expert counsellors and when issues arise relating to end of life we can link families to them and they can talk to them and receive advice about their children or their own situations.
We visit families for up to a year post-bereavement and we also organise a bereavement information day for families every 18 months. We do a sibling group also. In the past year we have found that we have been asked to link back in with children who are over four years of age and to provide hands-on care in the home because the families have got to know staff since the children were six months old and they now have reached the end of life. It is of benefit to see a familiar face and a person whom they have known all along.
As nurses we spend a lot of time on the telephone seeking medical cards, HSE funding and home care packages for families in order to grant their wish to have their children at home. We are members of the national development committee on palliative care, which is the blueprint for the policy. I am a committee member. We have one of the best-qualified paediatric teams. Currently, four of us are undertaking a master’s degree in complex needs in palliative care for children and young people in Coventry. We would prefer to do it in Ireland but such a course does not exist at the moment. One of our nurses is qualified in bereavement care. Our recommendation is that medical cards be sanctioned for children going home for end-of- life care. Many issues arise with regard to the sanctioning of PPS numbers before medical cards can be provided in order to get equipment to send children home to die.
Clarification is required on the long-term illness card and what is covered for children with long-term illness. Funding must be provided to ensure 24-hour care can be provided in the home at the end of life or the terminal phase, because that is what parents want. The adult home care teams are wonderful and they have such experience. I would love if they could provide 24-hour care because there are two home care teams that, unfortunately, do not cover weekends. Funding should be provided to enable them to provide such care and advice for nurses and families in the home.
It is important that paediatric nurses are employed in the community, as they are the experts.
They know and look after these children in the home. There ought to be defined end-of-life care pathways in order that everybody knows his or hers when taking his or her child home to die.
We would like education of nurses up to levels 8 or 9, master's degree level. We have absolutely fantastic nurses doing the work. It is a case of giving them the necessary education and further knowledge. It would be wonderful for the institutes to take on the course. The IHF sponsored the course for three months, or for three of the modules to be run over one year, but, unfortunately, that has not been followed through.
There should be funding in place for children to go home to die. I do not know if it is ring-fenced in the budget, but the money should be available. It is very difficult for the civil servants in that they want to give the money, but sometimes the budget is not available to provide the necessary care in the home.
Extra funding should be provided for the foundation in order for it to continue doing what it is doing, which it does very well and which it has been doing for the past 16 years. It is a case of laying out the red carpet for the families affected, not the red tape. All of this is recommended in the policy document. There are 31 recommendations in total. The committee has done fantastic work in seeing this through and is making great progress. The eight outreach nurses have definitely made a difference and we can definitely see it working in the community.
I thank Ms Moran, Ms Thomas and their crew for all their great work. I thank the Lauralynn Children's Hospice representatives also. I call on Ms Carroll, chairman of the Irish Childhood Bereavement Network, to make her presentation.
Ms Bríd Carroll:
The Irish Childhood Bereavement Network welcomes the opportunity to speak to committee members on behalf of bereaved children. We have heard about the palliative care of children who are dying, but when we think of bereaved children, we are thinking of children who are actually suffering loss from the moment of prognosis in the family. We cannot think of them outside the family context. We think of children as the forgotten mourners. Very often, we see them in cemeteries, but we do not actually think about them. We might give them a look of pity, but we do not actually follow on to see what happens to them. A child who is bereaved in childhood is bereaved for life. Every milestone of his or her life, including the transitions of First Holy Community, Confirmation, changing school, going to college, getting a job, getting married and having children, will have the shadow of the loss of childhood hanging over it.
From figures from the CSO, with which we had discussions in the past week, we have discovered that, according to widowed parents, 20,886 children under 19 years have been bereaved of a mother or a father. That is a very low estimate because it does not regard many of the children's siblings who are dying in palliative care or other children who have been bereaved.
The network was established only in the past 12 months. It was launched by the Minister for Children and Youth Affairs in July last year. With funding from the Irish Hospice Foundation and the Family Support Agency, we appointed a co-ordinator in March. There has been phenomenal work done since. The vision of the network is the sharing and developing of good practice, including training and resources. By doing so, the care of bereaved children and their parents will be improved across the country. The network has a principle of equity, a belief that all children will receive support they require, depending on the nature of the death. It is not specific to palliative care.
The network represents all professionals working with bereaved children across Ireland. In considering children's grief, we must take on board Dr.O'Reilly's point that children are not mini versions of adults. As professionals, we know that when adults are grieving, it is a case of their getting into the river of grief until they come out on the other side. For children, it is like splashing in puddles. Their grief is intermittent and intense, often caused by triggers that can feature for many years. Professionals believe exclusion and silence are the two most unhelpful phenomena for bereaved children. I refer to exclusion from funeral rituals because it is considered the children are too young to understand. We know from experience that even the youngest of children have stated, "I was there." They may be under four years but presence at the funeral is very significant in their development in the longer term. We need to educate parents in the light of this.
The second phenomenon, silence in the family home, is really detrimental. If there is an attitude of not addressing the subject in the house, children suffer silently. It can actually cause a lot of unfinished business for the children in regard to the loss of the deceased. We know children need acknowledgement and inclusion. The work done for up to 30 years by professionals around the country has been preventative; that was practised wisdom. With this approach, where can the bereaved children look for support? Research tells us that 60% of families can actually work through grief if they have information and a good natural support network. What happens if a child is nine years old and his or her mum and dad are all-consumed with his or her sibling's illness and there is nobody there for him or her? He or she is farmed out to the neighbours or left to fend for himself or herself. What happens if a child's dad takes ill with a brain haemorrhage or heart attack at work and dies within hours outside any palliative care setting? Who will look after the child then? Who will support him or her? From 20 years of practice, I know that 99% of the children I meet say to me that, until speaking to me, they had spoken to no one about their loss. That is a huge number.
Our school systems have a huge influence on children. Professionals believe schools can support the grieving child and notice the difficulties that arise in the classroom. School authorities can bring in parents and talk to them about the matter and can actually make referrals to obtain the extra support both the children and parents require in order to come through. We find that if we put that support in place, we actually enable parents to grieve and support their children simultaneously.
An audit of childhood bereavement services conducted in 2010 showed that services across the country were absolutely fragmented. The study compares with a UK study from 2003. In Ireland we have no standards for bereavement support services for adults or children. Therefore, we recommend the establishment of an agreed network for community, public, volunteer and professional education with respect to childhood bereavement. We recommend an agreed research agenda because we do not yet have enough evidence of the consequences or the services actually provided. We recommend continued support of the networks established and the European networks with which we are working. We recommend the development of existing services and frameworks for child bereavement services.
We use the analogy of the three-legged stool. The child is the seat and the support legs are the family, schools and services. Should any of the three legs not function, the child will collapse, with detrimental effects in the future. The Government, the Department of Health, the Department of Finance and the Department of Social Protection can work with us to realise our vision.
I do not know where to start because normally when we speak about the end of life, we speak about people who are older than us. In this case, we are talking about the other end of the scale. Everyone in this room appreciates the considerable work done voluntarily and with the children's hospitals and various specialists in trying to deliver as much care as possible for children at the end of life.
We talk about primary care, community care, care in the home and providing care and medical attention in the least expensive way. I find that it is difficult to obtain home care packages. When the HSE is making decisions on such packages, the child may be in Crumlin, Temple Street or elsewhere and the money may be coming from a local division's budget, thus leading to a reluctance to provide the package.
If the child is in Temple Street Hospital or Crumlin children's hospital, the money for a home care package comes out of a different budget. There is not enough money in the regions or the HSE divisions so it is passed back to the hospitals. That issue must be examined. It is an administrative issue but one which causes great grief to families. In fact, two cases from County Laois have been brought to my attention in recent days, where the children are in a children's hospital in Dublin and the HSE will not provide home care packages for them. The HSE is arguing that it does not have enough money left in the budget for that particular geographic area. The possibility of interlinking hospitals and home care packages on a national basis should be examined. If the aforementioned children were able to go home, it would save the State money. It would cost the HSE less in the long run, as well as freeing up beds in the acute hospitals for other children who badly need them. This is just an observation of mine but I believe we should all pursue this matter with the HSE and the Government.
Palliative care is a specialty whose development is ongoing in this country. Recent years have seen enormous changes in how we view palliative care and how it is provided. In that context, what professional specialties are needed most to deliver high-quality paediatric palliative care in the home setting? Is there a shortage of professionals and is there a shortage of training and education programmes for such professionals?
On the question of medical cards and long-term illness, we have all dealt with cases involving children who have lost or are about to lose a discretionary medical card. When an assessment is made of a child and a consultant confirms that he or she has an end-of-life condition, a medical card should be given until the child dies and not just for a period of time. Families should not be asked to go through a reassessment or reapplication process. The current situation regarding discretionary medical cards is causing huge difficulty and trauma for families.
We alll know that parents go to extraordinary lengths to care for their sick children but some of them are physical and emotional wrecks. In the context of respite care, should a child be cared for at home by professionals or should he or she be taken from the home and cared for elsewhere? In other words, where is the best place to give respite care which will benefit the family most? What would be the ideal system for providing respite care?
I agree with Dr. O'Reilly and Ms Ling that the focus should be on living. They spoke about supporting families but I ask them to outline the type of support provided to families in terms of making decisions. It is horrible for any family to find out that a child is terminally ill. In the context of the multitude of illnesses involved, what level of expertise is available to families? What kind of relationship do palliative care professionals have with general practitioners and public health nurses? I ask the witnesses to elaborate on the issue of overlapping services because ideally, resources in this area should be pooled. The witnesses spoke about the need to upskill nurses but are there enough nurses in the system to do this? I also ask the witnesses to elaborate on the personnel requirements for a quality palliative care system.
Ms Moran said that 60% of terminally ill children die at home and they die from hundreds of different types of conditions. She said that there are no waiting lists for palliative care and that someone will be in the home within 24 hours. That is a fantastic service which provides enormous relief for families. I ask her to elaborate further on the services provided. Reference was made to hands-on care, on-call services, night-time care and so forth. However, Ms Moran said that she also spends a lot of time on the phone, looking for medical cards and so forth, which I found distressing. I ask her to elaborate further on that.
Deputy Kelleher has already asked most of the questions I intended to ask. The death of a child must be the greatest catastrophe to be visited on any family. The evidence given this morning was rather distressing, to be honest. To choose the particular career path that the witnesses have chosen requires a very special kind of dedication and I mean that in the best possible sense. Sometimes we come across a tangled knot of bureaucracy, especially when dealing with the HSE, and the witnesses do not need to be told about that. I have had first-hand experience of that myself, as a former psychiatric nurse. There are so many different competing demands on the HSE and on this committee. Dr. O'Reilly quoted Nelson Mandela earlier who said that a nation can be judged by how it treats its children. Instead of simply praising the fine words of a statesman, we should try to give expression to those words. In the context of paediatric palliative care, everyone should do his or utmost to lay aside or cut through any bureaucracy involved and prioritise the children.
On the question of the upskilling of nurses, do the witnesses believe that the system of postgraduate degree courses for nurses present a financial disincentive for them to engage in additional education and training and further their careers? I believe that is a grave anomaly in the system.
I compliment all of the witnesses on the work they are doing
Like other committee members, I am very humbled in the company of the witnesses. I suspect they do not realise the value of the work they do. We are learning from them and have much to learn and much to help them with. They are here because they need to move palliative care on. Why are there not enough staff when the universities are bursting with nurses? Where is the gap in that context? The universities are training brilliant young women who are then going off to England and elsewhere because they cannot get work here. How do we fill that gap or address that? The staff needed for palliative care are here, being trained and educated but why are they not in the system? Following on from that, why are there not enough paediatric nurses and palliative paediatric nurses?
Dr. O'Reilly's paper was excellent. I ask her to elaborate on what she means by upskilling existing staff. What does that entail? How would Dr. O'Reilly embed those skills? What would she do or create around that and how would she like to see it done?
I have a question for Ms Ling. How can staff get the qualification they can obtain in England here? How can that be set up? How do we convince a university or college to do that?
Ms Carroll's paper was extraordinary. With the indulgence of the Chair, I wish to tell a short story. I was doing a piece on embalming in Ireland and met an embalmer, a young girl from Australia. She was a freelance embalmer. When she was very young her father died of meningitis. She was only nine years old, was his only daughter and adored him. She was not allowed to view the body, to grieve or to talk about it. That was one of the reasons she became an embalmer. Ms Carroll spoke very well about silence and exclusion. She also said that there are no standards for bereavement supports in Ireland. What does she mean by that? I am sure it is not a generalisation or sweeping statement and I ask if she has evidence to support that point.
Thank you ladies. It is lovely to see an all-female panel this morning and I welcome all of the witnesses. I must say, because it is not said enough, that the strength of character that it takes to work in the environment in which they work is exceptional. My heart goes out to them because I absolutely know that I could not do it. We were privileged to visit Sunshine House a year and a half ago. It is a fabulous and fantastic facility but I spent more time outside crying than I did inside. Hats off to everyone here and congratulations.
Is there interaction between all the organisations present, the Department of Health and the Health Service Executive, HSE? If so, how is it managed and who is responsible? Dr. Maeve O’Reilly pointed out that 20% of children who die in this country die in hospitals versus 50% of the adult population. How is it influenced by the hospice organisations?
It is an absolute disgrace that LauraLynn gets zero from the State while Jack and Jill gets a lousy 18% of its funding from the State. I assume the Irish Childhood Bereavement Network gets nothing either. Crumlin, while receiving Exchequer funding, is also financed through significant voluntary contributions. What is the position on the discussions on funding between these organisations, the HSE and the Department of Health?
Dr. Maeve O'Reilly:
With regard to the question on staffing levels, as I stated in my presentation, one cannot have specialist services without specialists. Palliative care is delivered across several levels. First, there is the generalist-GP-public health nurse level. It is also delivered in hospitals among paediatricians which is often adequate for many children. One in five life-limited children should have access to a specialist service.
We have one paediatrician appointed in May 2011 and her funding, provided by the Irish Hospice Foundation, is for five years. There is no guarantee this will be taken over by the State after it expires. Simply, the State must take it over because this arrangement cannot go on indefinitely. The Irish Hospice Foundation has pump-primed many of our posts, including some of our Crumlin posts which were eventually taken over by the HSE. Funding for this area must be ring-fenced.
One consultant is not enough. We get referrals from Temple Street which has a large cohort of life-limited children. With its neurosurgical unit, it would have many children with brain tumours. For those children who are very ill and not receiving chemotherapy, there are no palliative care sessions for them there. We try to work around this to see them on a grace-and-favour basis but that is not good enough. There should be at least a second full-time paediatrician in Dublin. We do not have the numbers nationally to have paediatricians everywhere. That is not practical or realistic but there are ways around it.
For example, a community paediatrician would see many life-limited children as part of their practice and do palliative care daily. We could employ a paediatrician with four sessions in palliative medicine who could work around the country. It would be a hub and spoke model with Dublin as the hub, where the bulk of children come through, and then the spoke, specialist services around the country.
Consultants play a key role in setting up and supporting the service, as well as providing clinical leadership, research and education and other multiple roles. An outreach nurse is usually based locally because the children in question want to be at home. There is one based in each of the eight regions now. Again, five of the eight are funded by the Irish Hospice Foundation, three by the HSE. They have been coming in on a phased basis. The last were appointed just several weeks ago. These nurses make a difference on the ground for parents. I have no doubt that children are able to stay at home because of these nurses. They are providing emotional support, practical assistance, symptom control and so forth for families at home. Very importantly, they are acting as a key worker helping families to navigate the system as Jack and Jill does. For example, many of the children we would have referred would have severe brain injuries. They would need input from neurology, dietetics, ophthalmology and neonatology. The nurse would help the parents of a child in such circumstances, say in Kerry, to contact the specialist units in Crumlin. This makes a real difference on the ground.
It was never intended just to have eight nurses. That figure was meant to be a start but it is not sustainable in the long term to have one nurse serving such a large area. It can be an emotionally draining experience as it can be very isolated. Accordingly, it is structured in such a way that their governance structure is within the local paediatric unit and a paediatrician in each region acts as their champion and support to them.
We need more consultants and outreach nurses. The Department of Health policy report stated that because the only team in the country is in Crumlin, it must be expanded and enhanced. It is multidisciplinary teamwork. At the moment we have one and a half specialist nurses working with us, funded by the HSE. There are two specialists, myself and Dr. Marie Twomey, but we are adult-trained so we are not ideal. The full-time paediatrician is Dr. Mary Devins.
When someone goes on leave, we are not allowed to replace them. We have a nurse going on maternity leave now, so we will be down a post for the guts of nine months. That will impact on the service we deliver on the ground. If we want to upskill staff, they have to be released. However, we cannot release nurses from the wards because there is no one to take over from them. Even though we are offering opportunities for upskilling, it is not really there unless they can do it in their own time.
We need to have a commitment from the HSE that it will fund the existing consultant post and quickly appoint a second to help support this service. We also believe in innovative models such as having a special-interest consultant around the country to reach children more locally. That can happen in time, however, because we need to get Dublin sorted first where the bulk of the children in question pass through. Our own team at Crumlin needs to be expanded and that is where we need to focus our resources at the moment.
Ms Julie Ling:
I was delighted to be asked a question about respite because I have just finished a PhD on it. Speaking to the parents about their respite needs, I noted parents want to care for their child at home. They do not want to send them to an institution. If they do, then they want to go with them which means their other children are at home with no one to care for them. The parents are usually sleep-deprived. It is the mothers providing the majority of this care. Parents want care provided by people they can trust and who can demonstrate they have the skills to provide the same level of care the parents themselves provide. If the HSE were to provide that care, it then goes back to the whole point about having the right nurses, training them and upskilling them.
On the question as to where our nurses are going, they are leaving because there is an embargo on recruitment and they cannot get jobs here. Now we have a shortage of children nurses. Existing staff cannot be released to do study leave. There are about 4,000 children with a life-limiting condition which is a much higher figure than was contained in our initial needs assessment report. Accordingly, there are very few people with a significant amount of skills. We need to work together with nurses from LauraLynn working with nurses from Jack and Jill. We need to have a seamless service while developing all our skills.
That would be really important.
Community health services in Ireland for everybody are rubbish. One cannot get the support one needs. When one talks about it being cheaper to care for people at home, it is not if one does it properly. We constantly compare our children's palliative care services to those in the UK. We look to them for figures and how to provide care. They have paediatric nurses in the community. We have nothing like that and we are constantly filling gaps because we do not have well-developed community services.
I have very frequently heard Professor Charles Normand make the economic argument that home care is cheaper. Sometimes, if one does that very well it is not cheaper, but it is much better for people and keeps them out of acute hospitals. Yesterday I was talking to nurses in Crumlin hospital. They had two children who needed to be discharged but there was no way to get them out. They were in an oncology ward, with queues of people waiting to come to have curative treatment. These are the real, true, gritty issues people need to address and that is not happening. I am off my soapbox now.
We need funding. LauraLynn is no further forward. We are completely funded by voluntary fund-raising and have a great fund-raising department, which the members and everyone in the Gallery will have noticed. We fund-raise very vigorously. If we want to start providing services and care in the community where parents want it, we will continue with our campaign but we hope to get some statutory funding too. We are a very small specialty and we must all work together in line with policy. With support we can get there and have a really brilliant children's palliative care service in this country.
Ms Sinead Moran:
Accessing home-care packages is a significant issue for families going home. It is becoming more of an issue because the funding is not there. Unfortunately, it is not down to the people in the HSE because if they could they would give the money tomorrow. We have serious issues with medical cards, especially for children, specifically for end-of-life care going home. If the parents of a child with Edwards' syndrome wish to take the child home, they must go and register the child's birth in the registration office, one parent if they are married and both if they are not married, to access a PPS number before the child receives a medical card to access whatever medication the child needs at home. That must change specifically for those children because sometimes they are only around for 24 to 36 hours and to ask the parent to leave that child and go and do that is unheard of and unfair.
Regarding 24-hour care we are lucky because we get referrals from Crumlin or Temple Street hospitals. From Crumlin it would be from the palliative care team but it is often from the outreach nurses who are in place, and there are eight of them locally. A referral will come to Jack and Jill about a child whom they wish to send home and who requires nursing care. Recently Ms Thomas and I received a call for a little girl on a Thursday whom the parents wished to take home that day. The outreach nurse, Ms Thomas and I met the parents with the palliative care team in the hospital that day and planned what we would do about getting the family home. They went home that evening at 7 p.m. The following morning they wanted a nurse in the home and there was a nurse in the home the following morning.
It is about co-ordinating all that between us. The outreach nurse would have linked with the public health nurse, GPs and all those services. She co-ordinates all of us to come together to get these children home. We all met in the house on the Friday morning to plan what would happen for the weekend. This is the issue. We had a nurse organised for the weekend but by the weekend nobody was around. I was on-call for the weekend. The home care team in that area does not cover weekends. Unfortunately, the outreach nurses do not cover weekends. The GP had an on-call service. I did one weekend and Ms Thomas did the following weekend.
It is for those parents to have that expert at the end of the phone. It is about giving funding back to these home-care teams because they are the experts in the area, giving advice to parents on symptom management, etc. If an issue arose over the weekend I would ring the GP to guide and advise. We all work together. We meet the outreach nurses regularly, approximately once a month, to discuss the children we have, the cases and how things are going. For active palliative care for children going home we meet regularly and work out who is doing what. People do not want five or six people coming in on one day. One might go on a Monday, I might go on a Tuesday. It is about what parents need. We decide between us how it works.
One of our people recently cared for a palliative baby in Wexford and she spent much of her time in the home doing hands-on, out of hours care because, unfortunately, they did not get a nurse for that night and that child got into crisis that evening at 10:30 p.m. She stayed in the house until 6 a.m. the following day until the child died peacefully at home. That is the sort of work we do on top of everything else. I have been called out at 12.30 a.m. and that is not ideal. We cannot continue that. There are only 11 of us so we must examine getting qualified paediatric nurses in the home on top of palliative care consultants and outreach nurses. They have made such a difference to our lives over the years.
I have phoned Dr. O'Reilly from a family's home seeking help and advice and it is wonderful to have those experts, because they are the experts. It is also about training ourselves up to that expert level and having the opportunity for other nurses to avail of that and be educated and trained in palliative care and end of life. Many people still do not understand that word and are afraid of it. They think palliative care must mean the child is going to die now. A child was referred to us and they said she might live eight or nine days but she survived for three years and died on Christmas Day. The trajectories of these conditions are very diverse.
We all very much work together as a team. We meet with LauraLynn every six months. We discuss our cases and the services we both provide to try and see how we can all work together to best meet the parents' needs. We and the outreach nurses go around all the disability services, St. Michael's House, the Central Remedial Clinic, CRC, Enable Ireland and St. John of God, and we sit together with the social workers and nurses and discuss the cases and figure it out between us. We are all very much working together as a team to meet the families' needs as best we can.
Ms Caroline Thomas:
I reiterate that we are a charity and are the only providers of hands-on paediatric nursing care in Ireland. The case Ms Moran referred to was in Wicklow approximately one and a half months ago. The child left Crumlin hospital without a medical card so between Crumlin hospital and ourselves we provided the child with the equipment needed for a week. That is the reality on the ground. Crumlin hospital and Jack and Jill provided the equipment to feed that child through a nasogastric tube. The public health nurse could do nothing because she cannot apply for the equipment until she has a medical card number. Our service is for children under the age of four.
That comes back to the education issue, as Ms Ling and Dr. O'Reilly said. The GP who was linked in and whom I spoke to when I was on call asked me why I was feeding the child. That is the child's most basic need. The last thing one would do would be to stop feeding a child. People are not exposed to these cases and they do not understand.
I recently had a case in Malahide of little boy who went home with a life-limiting condition and had Jack and Jill respite for a month. He did not need a home-care package and subsequently he returned to Temple Street Hospital because his condition had deteriorated. He was unable to go home because he needed maximum nursing care. While he was waiting for a home-care package he died in Temple Street Hospital, not in accordance with the wishes of his parents who wanted to take him home. We could not provide enough support because our maximum is 64 hours per month.
Subsequently that mother wrote to The Irish Times about another child who had been sitting in Temple Street Hospital awaiting a home-care package for over a year, and two days later her package was sanctioned. That case was in County Offaly. That is the reality. Everybody is talking about the medical card but, unfortunately, that is the reality.
Ms Bríd Carroll:
The stories are endless. Each of us here works very much in conjunction with each other. The vice chairman of our committee and I support Jack and Jill regarding the counselling children and parents need when they are going through these horrendous days. We also work with LauraLynn in terms of conferences and putting in the information.
I was asked what is my evidence that there are no standards for bereavement care in Ireland. I conducted an audit in 2010 on childhood bereavement services and it is quite blatant. I know from practice that there are no standards because there has never been a body to set up those standards. In their absence we look to the UK standards. We collaborate with the UK Childhood Bereavement Network. Ms Alison Penny, the co-ordinator of that network, was at our last monthly meeting and we work together because we do not need to reinvent the wheel. It is there. We need to take the best practice from it. We do not have to fall into the pitfalls because somebody has done it already. The UK Childhood Bereavement Network has been in existence for ten years.
Our service has been available for only six months, but with the help of every member of the advisory committee, we have constructed a resource website which will be live in the coming weeks. We are working in conjunction with European networks. At the end of September two of us attended the inaugural meeting of the European Family Bereavement Network at the Leuven Institute where we met representatives of other child bereavement networks from Germany and other countries. We intend to work with the information we have gathered internationally.
We believe the best bereavement care empowers the natural support networks of the child to support him or her. Two of our members are working on the issue of e-learning for teachers in schools in conjunction with the All Ireland Institute of Hospice and Palliative Care. The Irish Hospice Foundation has been mentioned many times and it takes the lead in palliative care at every level. We must follow its lead with our vision. The Irish Childhood Bereavement Network is an advocate and we are delighted to be here on behalf of children to let the committee know how difficult it is for parents and children who are bereaved and going through the stages of palliative care. We want the committee to come on board in whatever way it sees fit to promote and support us in all of the work we do.
I thank the delegates. I sit here in awe of what they have stated. It is very difficult not to be emotional and we are only listening to the evidence, not doing the work they do.
Like Deputy Regina Doherty, I still feel the rawness of the emotion of visiting LauraLynn House last year. Ms Ling stated we needed a seamless service and everybody in the room agrees. We all know where we want to get to, but what are the immediate steps we need to see being taken in order that committee members know we are working towards it, as opposed to it merely being a vision or dream we all have?
Dr. O'Reilly mentioned maternity leave, an issue that has also been raised in connection with social workers, particularly with the new Child and Family Agency. Two weeks ago I secured a concession that in the new agency there would be replacement staff for staff on maternity leave and that the embargo would be lifted. This is also a big issue in specialist care and I want to make absolutely sure I understand the position. The fact that there is no cover in specialist services while staff are on maternity leave is of great concern, particularly given the predominance of females in the professions I imagine. I would like this to be confirmed before I follow up on the issue.
An issue I am dealing with is that of rare diseases, in which regard I had to write to 41 organisations. This is slightly different from the area in which the delegates are involved, but I am trying to co-ordinate them in order that they can work towards improving the services required. They have dealt comprehensively with how they co-ordinate their services, which is very welcome. That is the only way to deliver the best possible level of care.
Is it possible to upskill care assistants and other such staff who are not qualified nurses but who are very effective in providing care? Is work being done in this regard? We have not focused on this issue. Much work done by nurses in hospitals here is done by care assistants in other countries. We should examine this aspect. Have the delegates worked on introducing a training programme for persons who do not have a nursing qualification but who have a huge interest in this area and would love to become involved in it to bring them up to a certain level to provide this support?
Dr. Maeve O'Reilly:
With regard to maternity leave, the consultant paediatrician is on maternity leave and has not been replaced. Dr. Twomey and I provide the service. We have 1.5 whole-time equivalents in Crumlin awe lost half a post when our last nurse went and was not replaced. She is due to go on maternity leave next February and as of the last meeting there will not be a replacement for her. This certainly influences what happens, not only in the case of palliative care. It happens everywhere.
I am conscious that I did not answer some of the questions put at the beginning about the upskilling of staff because it is the way to go. The people concerned already have generic skills and just need to be upskilled. It would be a more cost-effective way of doing it. To be fair to the HSE which we have been bashing a little, we have had positive developments. An education programme was started in Crumlin in response to the needs assessment of 2005. It was also pump primed by the Irish Hospice Foundation, but my understanding is that the HSE is now funding it. We provide education at two levels. We organise study days throughout the country which are attended by GPs and public health nurses when we deliver talks on general palliative care and symptom control. These are well attended and well evaluated. We also provide level two training in Crumlin. It is one thing to provide education, but one must be able to release staff to attend, which is another critical issue. We are very lucky that the three nurses who work with us in Crumlin are highly trained and have masters degrees. They are superb nurses but getting funding for them to undertake a masters degree course is like negotiating the Good Friday Agreement and takes forever. We are lucky to receive donations from the public and families and try to ring-fence this money. It goes into the general pot, but we try to keep it to one side in order that we can educate our staff. Much is done in the staff's own time; it is not done within working hours. These are constraints. We have been speaking about upskilling and considering getting some of the LauraLynn staff who are excellent in providing respite care but who perhaps do not have much experience in providing end-of-life care to work in adult hospices for a short period or to come to us in Crumlin. The goodwill is there and it is not a problem; it is just a question of practicalities in getting staff released.
Ms Julie Ling:
Upskilling is something we take very seriously at LauraLynn. We have developed the education and training department and run courses for health care assistants, parents and health care professionals. We envisage that if we move into the community, the hospice at home model we will follow is one which is very well established in the United Kingdom. Sometimes parents just need to sleep for the night and their child may be stable with some needs. It would be possible for a health care assistant to provide such care. We are examining a model of having health care assistants and staff nurses whose work would be dictated by the child's needs rather than who was available. Recently we visited Scotland where there is in place a very interesting model of palliative care for children. There are two hospices, one in Glasgow and the other in Edinburgh, with outreach teams based in Inverness and Aberdeen. It is a very cohesive service which links together.
It is a new specialty. I have been in children's palliative care since 2002 and things have started to change so much. We all know each other. Collaborative working is the big issue we need to work on. As Dr. O'Reilly asked, are staff moving from one area to another? Children's palliative care means we can respond to that, and this is the way we can upskill our staff.
I should also mention there is a master's level module on children's palliative care at NUI Galway. This currently takes 24 people, which is the highest number of students this year on any of the postgraduate master's courses. The interest is there; again, it is about getting people funded. People are funding themselves, driving over to Galway to attend and so on. It is very hard for people to attend but they are making those efforts.
With regard to the national development committee, I am looking at the public gallery and I know the same faces appear on the committee for children's palliative care, including those of Ms Sinead Moran, Dr. Maeve O'Reilly, Ms Sharon Foley and myself. We work together in trying to push this agenda forward, but we need this committee's support. The main thing is that we do everything we can to try to get things moving. Our colleagues in the HSE have the willingness but just do not have the resources to be able to help us move things forward. That is the key point.
Ms Sinead Moran:
With regard to the question on the outreach nurses, it has taken a long battle to get these eight girls in place - seven girls and one guy, actually. It has been wonderful. However, they were taken on as key workers to co-ordinate everybody to come together, so they work Monday to Friday from 8 a.m. to 4 p.m., and they do not do out-of-hours or weekends. They were taken on to co-ordinate and they do not do the hands-on work. The bigger picture is that we need the people to do the work in the homes. We need nurses to go in to do the hands-on work, give the parents a break, give the medications and do whatever needs to be done when these kids are at the end of life.
The outreach nurses are wonderful and they have made a difference, without a doubt. Research shows that 25% of people die between nine and five years of age-----
Ms Caroline Thomas:
It is always on a Friday evening that we get a call. We work fantastically with the home care teams. Again, the majority are adults. If the teams had paediatric nurses, they could advise and give some of the management advice, but they do not have paediatric nurses doing the hands-on care. That is where we get drafted in because the parents, when Friday evening comes, might have been up for four nights in a row and they need somebody to come in and let them go to bed.
Ms Caroline Thomas:
If we had more money perhaps we could do some of it, but our age criterion is zero to four years, so we are specific to our area. The reality is that if the home care teams had nurses who could go out and do the hands-on work as well as giving advice and support, it would be fantastic.
It seems to me the answer is staff upskilling, more consultants and a co-ordinated educational process of upskilling, letting people out so that others can come in. That is what is needed. Aside from all the other aspects of the work, these are major problems. When I talk to people, they are students of nursing and are in the schools of nursing, but the next thing they are gone to England on the boat. We are not holding on to our young nurses. We are not keeping them and upskilling them. Am I right about this? Is this not a major problem?
I want to come back to the area of care assistants, which I accept is a very specialised one. I was involved with a community hospital that wanted to take on people under the JobBridge programme but was told that regulations did not allow it. In fairness, the hospital wrote to the Minister, who changed the regulation. The whole reason the community hospital wanted to take on people under JobBridge was to train them so they could then go out and work and provide home care in the community. We are not doing enough on that. Obviously suitable people must be found, as not everyone is suited to work as a care assistant, but we should look seriously at training local people in local communities who want to do this type of work but do not know where to get the training.
Ms Julie Ling:
Many families employ family members with their grants. Many voluntary bodies provide cash funding to parents and they effectively become the employer. They can go out and would often employ a neighbour or would sometimes pay a mother to officially care for the child. This goes back to the issue of finding somebody they can trust. That does happen for children who are very stable, have a life-limiting condition and are living at home. When parents need their break, they employ people locally, so care assistants do provide a lot of the care. However, that would not appear in any statistics or figures because it is often done through a cash grant from COPE, the Brothers of Charity or a similar organisation. It does happen.
I thank the witnesses not just for attending today but for the immense work they are doing. Our last meeting on this is next Thursday. We will then compile a report, which we will submit to the Department and the Minister. Hopefully, it will be a continuum to the next level of activity. The witnesses' contributions through the written presentations and their answers to questions have been an invaluable source of information. We thank them most sincerely for attending.
We will suspend now until 12 noon.
Deputies Caoimhghín Ó Caoláin and Catherine Byrne and Senators Colm Burke and Imelda Henry apologise for their absence. Deputy Billy Kelleher must speak in the Dáil in one minute.
This is the fifth in the series of discussions on end-of-life issues. I welcome Mr. Odhrán Allen, Dr. Regina McQuillan, Dr. Paul D'Alton and Ms Orla Keegan and thank them for being present. I remind everybody present to switch off their mobile phones. I wish to draw the attention of witnesses to the fact that, by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. However, if they are directed by the committee to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given. They are asked to respect the parliamentary practice that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any person outside the Houses or an official either by name or in such a way as to make him or her identifiable.
I thank everybody for being present. We have had four very informative sessions and I am sure this session will be equally important. I invite Mr. Odhrán Allen, director of mental health for the Gay and Lesbian Equality Network, GLEN, to make his opening statement.
Mr. Odhrán Allen:
I thank the Chairman and members for inviting us to make a presentation on end-of-life issues for lesbian, gay, bisexual and transgender people. This is an important matter and GLEN welcomes the committee's consideration of it. Throughout my presentation I will use the acronym LGBT to refer to lesbian, gay, bisexual and transgender people. I hope to highlight how LGBT people's needs can be fully incorporated into end-of-life policy and service delivery in Ireland.
End-of-life issues affect LGBT people of all ages, as well as their partners, families and friends. However, older LGBT people are the group most affected by and concerned about end-of-life issues. For this reason I will focus on older LGBT people today, but the recommendations I make are applicable to services to LGBT people of all ages.
A recent Irish study called Visible Lives: Identifying the Experiences and Needs of Older LGBT People was the first study of its kind in Ireland. It was commissioned by GLEN, funded by Age and Opportunity and the HSE and published in 2011. Professor Agnes Higgins from Trinity College Dublin was the principal investigator in this study and is present in the gallery. On behalf of GLEN, I take this opportunity to thank her and her research team for producing this excellent research report. I understand a copy of the report has been made available for members.
The study surveyed 144 LGBT people aged between 55 and 80 from across the Republic of Ireland, and 36 people were interviewed in depth. The study found that 46% were living alone, 43% were single and 31% were feeling lonelier as they aged. One in four are either just about getting by or are struggling financially. Only 11% said they had written a living will and just one in four had given someone power of attorney. Some 48% said they had discussed their final wishes with someone and 62% had written a last will and testament. By far the most preferred option was to live their final years and die in their own homes, as is the case for the general population. The least preferred option is to be in a nursing home. This is because of fears of being placed in a nursing home. Some said they would prefer to live in an exclusively LGBT retirement community or an older-age facility that is fully respectful of LGBT people because of these fears. A major concern for participants in the study is that the staff in older-age and end-of-life services will not recognise or respect their LGBT identity or their relationships and that they would have in effect to return to the closet and conceal their LGBT identity in order to feel safe when using end-of-life services. This is an incredibly difficult scenario for somebody at an end-of-life stage. Almost one in four said they had received poor quality health care and 40% considered this to be related to being LGBT. Just one in three believed that health care professionals had sufficient knowledge about LGBT issues and only 40% felt respected as an LGBT person by their health care provider. It is clear from this study that older LGBT people in Ireland fear being discriminated against when using end-of-life services, including nursing homes, and this results in their being cautious about being open about their sexual orientation or gender identity and reluctant to engage with health and support services. However, given the increased incidence of being single, living alone and not having traditional family structures and supports, as evidenced in the Visible Lives study, older LGBT people are most likely to need and indeed benefit from such services at end of life.
Transgender people have concerns that services will not respond to their needs or respect their gender identity, particularly as they age. There is good evidence from Irish research that health care practitioners can have serious gaps in their understanding of the health care needs of transgender people and how to provide appropriate supports to them. LGBT people may have reasons for not disclosing they are in a loving, close same-sex relationship, and not being "out" can have significant implications for gay and lesbian couples when one partner is seriously ill or dies. This can lead to exclusion of the surviving partner from end-of-life decision-making or funeral planning. Difficult experiences such as these can be further compounded when the grief of the surviving partner is unrecognised or unacknowledged. This is referred to as disenfranchised grief and has been evidenced in Irish research on bereaved gay and lesbian people.
I will now focus on some of the solutions. The findings of Visible Lives, coupled with the difficult experiences older LGBT people had in the past, can lead to a particular set of challenges for LGBT people at end of life and for those providing services to them. This point is echoed in an excellent resource developed by the National Health Service in the UK called The Route to Success in End of Life Care: Achieving Quality for Lesbian, Gay, Bisexual and Transgender People. The authors of this report identify that end-of-life services need to actively encourage LGBT people to be confident in being open about their relationships and needs. They say this can be achieved in a number of ways and set out four suggestions: that it should be recognised that sexual orientation and gender identity is about who a person is and with whom he or she falls in love and has loving committed relationships, as opposed to with whom he or she has sex; that appropriate and inclusive language should be used to facilitate understanding and identification of who is important to the LGBT person; that LGBT people and their families and carers need a comfortable and safe environment to feel able to be open; and that there should be an LGBT-friendly culture based on an inclusive practice model.
With regard to an inclusive practice model, the Psychological Society of Ireland produced a policy document on inclusive practice in health services. It described inclusive practice as follows: expecting diversity among service users and respecting that diversity; understanding the issues facing diverse groups such as LGBT people and being able to respond to their specific needs; and providing an accessible and appropriate service within one's area of competence.
In summary, GLEN advocates the following to ensure that the needs of LGBT people are met at the end of life. An end-of-life policy should be based on principles such as equality, diversity and respect for individual autonomy, and LGBT people should be named as a population group with specific needs; and end-of-life services should be based on a model of inclusive practice that recognises and responds to the needs of different groups, such as LGBT people, and fully respects LGBT people’s identities, relationships and families. I thank the committee for the opportunity to speak and I am happy to answer any questions.
I thank Mr. Allen for his presentation and for the immense work done by GLEN. I call on Dr. Regina McQuillan, consultant in palliative medicine and medical director at St. Francis Hospice, and thank her for attending.
Dr. Regina McQuillan:
I thank the committee for the invitation. Members will have received copies of my oral presentation and a written submission. I shall go through my oral presentation but perhaps not word for word, just the main points.
There are a number of issues relating to Travellers and how they might die well in Ireland. First, Travellers are a minority group in Ireland. There are about 36,000 Travellers - that is, less than 1% of the population - which creates issues such as how to maintain staff awareness, through training and education, in order for staff to deal with people they encounter infrequently. One of the pieces of information that I have drawn on is the All Ireland Traveller Health Study, Our Geels, published in 2010. The study covered North and South and examined Traveller health issues. The findings were as follows: 75% of Travellers in the Republic of Ireland lived in family units of five or less, which is not our traditional idea of them; 73% lived in a house, most of which were local authority; and 18% lived in a trailer, mobile home or caravan; in the previous year of the study 78% of families had not travelled; 28% of families reported difficultly reading or filling out forms. When it came to coping with life, 98% of the Travellers surveyed were Catholic and most said that their religion was very important to them; 40% of Travellers, a percentage recognised by Mr. Allen, felt they had been discriminated against; and Travellers sometimes hid their identity, called "passing off", when they felt they were going to be discriminated against when receiving services or accessing social activities.
Traveller societies can be considered collectivist rather than individualist. In Traveller society the wishes of the community are sometimes as important, if not more important, than the wishes of the individual. In collectivist societies large crowds tend to gather at times of family crisis. That means that for family gatherings such as weddings and funerals, large crowds may attend, sometimes in the hundreds, which causes disruption and unease among the settled community. At times of serious illness large crowds can gather and it is not unusual to find over a hundred people wishing to visit a person who is dying.
Travellers have poorer health than the general population. The health study showed that Travellers have a higher rate of doctor-diagnosed illness than the settled population, including chronic bronchitis and asthma. The study showed that Travellers had access to health services and most Travellers had a medical card. However, Travellers are more likely to use accident and emergency departments at a higher rate than the settled population. They also have poorer follow-up from hospitals than the settled population.
An important factor to point out is that Traveller life expectancy is much shorter than that of the settled population. The male Traveller life expectancy is 61 years, a statistic that has not improved since 1987 and equals the life expectancy for the settled male population in 1945. Female Traveller life expectancy is now 71 years. That is an improvement on the 1987 statistics and is the same as the life expectancy for the female settled population in 1960. The causes of excess mortality among the Traveller community appear to be mainly respiratory and cardiac disease, particularly respiratory disease, and external factors such as accidents and suicides.
I was involved in research carried out by Dr. Onja Van Doorslaer into the use of palliative care by Travellers. At the time I conducted research into the Eastern Regional Health Authority. It is important for us to remember that Travellers believe it is unlucky to talk about serious illness and approaching or impending death. Travellers are reluctant to discuss serious illness and believe discussing the matter will bring bad luck. As I said earlier, when a person is seriously ill in the Traveller community it is custom for families to visit. A Traveller's close family can comprise hundreds of people, whereas a settled person would consider close family to amount to between ten and 20 people. There may be added distress if staff do not understand the importance of large numbers of visitors for a very sick Traveller. Travellers tend to be aware that the gathering of a large crowds in such settings causes upset to health care organisations. Sometimes the health care organisation manages the matter by calling security and restricting the number of visitors, but that can cause difficulties. It is important to identify the key people in the Traveller group. Perhaps members of the Travellers community or religious communities could be asked to liaise between the health care organisation and the Travellers.
Travellers view hospitals as places of hope where a cure is possible. Travellers involved in the study had experienced hospice care but were not keen on it and considered a hospice a place of last resort. They felt that recognising approaching death through the use of a hospice was not appropriate. The research showed that Travellers felt more positive towards community palliative care because it allowed people to remain at home for longer. However, dying at home is unacceptable among the Traveller culture. Dying in hospital is considered most appropriate. Death at home is unacceptable because Travellers will say that great sadness will be associated with the place of death. In the past the caravan or trailer in which a Traveller had died would be burned. That no longer happens, but that is more for economic reasons. Nowadays, in cases in which Travellers live in a house but somebody dies in it, his or her family will move away and not return for a number of months until the house has been redecorated and blessed. Similarly, when a Traveller dies in a trailer, attempts will be made to sell it off, but Travellers do not buy trailers in which a person has died.
With regard to Traveller traditions associated with memorialisation, funerals are normally arranged by Traveller men. Nowadays Travellers tend to be buried in the place where they have lived, because most of them no longer travel. However, conflicts can arise between the desires of the original family and that of the family of marriage on the location for burial. As I said earlier, death is an important event in such a collective society so hundreds of people may attend the funeral, thus leading to tension among the settled community.
Travellers do not always cope well with grief and bereavement. Sometimes small societies tend to view a death as a great loss. Many people use alcohol as a way of coping and Travellers are aware that such action is not necessarily a useful coping mechanism.
With regard to planning ahead, even though it may be said, it is really important that a patient has a good understanding of his or her situation, gives informed consent, plans for the future and participates in care planning, perhaps even plans in advance. Many societies do not want to think too far ahead. That is definitely true for the Traveller community, and for many Irish people whom I have dealt with; they find planning ahead and thinking about death quite difficult. I am involved in developing advance care planning and it is important to recognise that advance care planning should be patient-led and done with patient agreement, rather than a requirement. Many people want to live day-to-day and leave the matter in God's hands.
We must consider ways of reducing mortality rates among Travellers. I will outline the recommendations made in the All Ireland Heath Study. Accessible information for health care workers on caring for Travellers needs to be made available. Perhaps this can be done in a straightforward manner using the Internet or an app. We must also maintain our focus on care for people with a life-threatening illness, improve their present care and quality of life and, if the patient so wishes, be open to the idea of advance care planning. I thank the committee for listening.
I thank Dr. McQuillan for her informative presentation and written submission. I remind members that the written submissions have been included in their information packs. The submissions are very substantive and well worth reading. They will form part of the committee's final report.
The next speaker is Dr. Paul D'Alton, head and clinical lead of the Department of Psycho-Oncology and adjunct lecturer at the School of Psychology at UCD. He is very welcome and I call on him to commence.
Dr. Paul D'Alton:
I thank the Chairman. I am joined by my colleague from St. Vincent's University Hospital, Ms Margaret Boland. I am also accompanied by Ms Olwyn Ryan from the Irish Cancer Society.
I speak today as a psychologist who works on a daily basis with dying patients. The question “What needs to happen to ensure that people die well in Ireland?” cuts straight to the values that underlie our society. Death remains the biggest threat as well as the greatest challenge to humanity. It is the single universal event that affects all of us in more ways than we care to know. There is a growing amount of literature that points to the fact that death is not a discrete event; rather, we die as we live. Over the course of my clinical career I have worked with several hundred patients who have died and almost without exception each one has testified to that maxim. In this way dying well does not simply involve the last days or weeks of life; rather, it is the product of attitudes and values that we hold as citizens and governors of the State.
These attitudes and values underpin how we prioritise and organise our services, how we interact on a personal level, and fundamentally how our society responds to the issue of death and dying. While the bricks and mortar and the significant gaps that exist in services for end-of-life care matter hugely, I suggest to the committee today that if we do not address the underlying psychological challenges underpinning end of life in Ireland, our attempts to help our citizens die well are at the very least compromised.
We know that death is unavoidable and that one day each one of us will painfully separate from the people we love. We know that each year around 29,000 people die in Ireland. We know that the majority, about 75%, will die in hospitals and long-stay facilities. The end of life, like its beginning, is profoundly important, and increasingly, hospital is the setting in which these moments in the life cycle take place. However, our knowledge of the psychology of death and dying in these environments is extremely limited. We need to talk about death and dying with the patients in our care who are dying. These patients need to become participants in our research studies. In fact the ongoing failure to include patients who are dying in our research is, I believe, unethical. This is really sensitive and complex research, but that is not an excuse to shy away from it.
The greatest - and, I would argue, the most enduring - hurt experienced by the dying and their families is most often psychological: watching a family member becoming withdrawn, agitated and scared in the last few weeks of his or her life due to undiagnosed and untreated depression or anxiety, or the unintentional emotional insensitivity of a doctor, nurse or other health care provider. We also know that minorities are likely to suffer more psychologically at end of life. The stress of a life-threatening illness is compounded by minority stress - that is, the stress associated with increased social isolation and increased depression, anxiety and substance misuse.
Our health care system has evolved as a model of care that has "cure" at its centre. Death and dying are often marginalised into sub-specialities and external locations, all of which give an implicit message that death is someone else’s business. From a psychological perspective, this move away from death represents our attempts to deny or avoid the very nature of our own mortality. Research tells us that our psychological capacity as individuals and as a collective whole to face up to death as part of life has a major impact on the day-to-day reality of how we care for our dying. The recent Irish Hospice Foundation, IHF, report into end-of-life care concluded by saying that most of the challenges in quality improvement in end-of-life care are more human than technical.
At a personal level, we often add suffering to the unavoidable pain of death and dying, with popular pseudo-science psychology myths that tell people to "think positive" and to "battle on" with the suggestion that "positivity" or mental attitude will change the course of one’s disease. The founder of psycho-oncology, Dr. Jimmie Holland, referred to this as the "tyranny of the positive". Such a tyranny causes significant psychological isolation and interrupts the most important moments of our lives, the conversations with our loved ones at the end of life.
We know from literature and from multiple studies that relationships matter. Time and time again it has been shown that relationships build resilience, protect against anxiety and depression, and fundamentally make us happier as individuals and as a nation. Relationships matter so much more at the end of life; when we are faced with death they take on paramount importance. Professor Byock, chair of palliative medicine at Dartmouth Medical School, who has decades of experience caring for the dying, recently published a book entitled The Four Things That Matter Most.They are the conversations with loved ones that include these four things: "Please forgive me", "I forgive you", "Thank you" and "I love you". Unless we can build an end-of-life culture that facilitates these kinds of conversation, we are never going to reach the point at which our citizens die well.
My written submission has five concrete recommendations that will help us move towards building a culture in which these conversations can be had. I wish to draw the committee's attention to the first of those recommendations. As the committee will be aware, cancer is among the leading causes of death in our society, and the numbers are increasing. By 2020 one in three of us will be diagnosed with cancer. Centralising cancer services to eight cancer centres has been a very positive development. However, the major shortfall is that only two of the eight cancer centres have a dedicated psycho-oncology service. Approximately 40% of cancer patients will suffer clinical anxiety and depression that will require the intervention of a mental health professional. In six of our cancer centres that service will not be provided. It is no longer acceptable that the quality of a patient’s cancer treatment depends on his or her catchment area. This inequality needs to be addressed as a matter of urgency. A standardised psycho-oncology service should be established in each of the eight cancer centres in line with best international practice.
We know that death is inevitable and that one day all of us here will be separated painfully from the people we love. We know that this separation causes huge emotional suffering. I suggest that this suffering can be made more bearable and that our citizens will die well in a culture in which we can approach rather than avoid our mortality and in which the four things that matter most at the end of life can be uttered - "Please forgive me", "I forgive you", "Thank you", and "I love you".
Ms Orla Keegan:
I thank the Chairman and members of the committee. I may not read word-for-word from my script.
We welcome the opportunity to appear before the committee. The theme that we, the Irish Hospice Foundation, will speak about is bereavement in Ireland. It explicitly acknowledges that each of the deaths the committee has heard about has a living legacy. Today alone 80 people may die in Ireland. Eighty people died yesterday and 80 will die tomorrow. Since 24 October, when the joint committee met to begin these sessions, I estimate that 1,200 people have died in Ireland. That makes for many bereaved families, parents, wives, husbands, brothers, sisters, children, grandchildren and friends. They are the people whom members meet all the time in their constituencies. Members will be very attuned to the individual circumstances, stories and complexities behind each death. We estimate that if ten people are affected by a single death then 290,000 people are bereaved each year.
The vision of our bereavement work at the Irish Hospice Foundation is that people experiencing loss and bereavement are met with informed compassion and with appropriate care regardless of the circumstances of the loss. The committee will have heard already the variety of circumstances that may pertain to people's illnesses, including the age at which they die, the age at which people are bereaved, the type of death, and relationships, tradition and culture.
In my presentation I make three points that are further backed up in the written submission. First, good bereavement care begins with good end-of-life care, good palliative care and good communication. Second, bereavement is best supported through developing our communities, which includes our professional communities. Third, we would like some form of strategic framework to guide development.
Research shows us that good end of life care is good bereavement care. We do not have to listen for too long to hear people say this. I was at a conference recently where somebody speaking from the floor said that because her partner died well, she and her children could live well. This is the sort of living legacy we would like to be in the position to make the norm in Ireland.
We call for education and training on the end of life, understanding of loss and the sensitivities members have already heard mentioned. The upcoming palliative care framework praises some of the requirements we propose and we would like education and training to follow up on them. The focus of the education should be on care, but also on communication and how to help assure people that everything that can be done is being done. We are aware that this is not the first time committee members have heard about the need for education, but we should not forget that education on loss is a part of that. Another area of education should focus on the needs and requirements of people working with loss day in and out and the strategies they need to cope with that.
Not all deaths are expected and formal and part-time education courses should be available for the police, emergency responders, paramedics and people who must deal with and break bad news. While education is important, it is not the only solution. We also need to back up and reiterate some of the changes called for in other sessions, such as the availability of care, choice for care, out of hours cover, the quality of facilities and so on. We need all of these in place to ensure the experience is better for the individual who is dying and their families. We have the opportunity to provide they have memories that are ones of solace rather than extra pain, unintended as that might be.
We need to build communities of care. Bereavement is not an illness, but it does have health consequences for people. It is psychologically painful and there are economic implications for them. Given it is not an illness, we need to promote a natural community response. Bereavement care should be embedded into the fabric of society. We are talking about building communities where people do not cross the road to avoid the bereaved and where offers of help last over time. It is important also to think of those bereaved whose loss may not be recognised. Some losses, such as miscarriage, may not have been shared and such losses are more difficult to support. In gay and lesbian relationships that may not have been acknowledged the loss of a partner may not be supported. There are also complex, invisible losses, such as those associated with abortion. All of these are happening in our communities.
Workplace initiatives, such as the compassionate community project in Milford and grief at work initiatives, are a good example of efforts to address bereavement issues. Efforts should also be made to deal with bereavement issues in schools. We should start at the societal level. More structured ways of helping people cope with bereavement are through volunteer bereavement or befriending services. These exist in all of our communities and their trained volunteers provide vital bereavement services. Members will know some of these services, for example, Console, Rainbows, Anam Cara and Bethany. There is scope to harness and develop these services further by helping develop consistent good practice and through shared training. I would like to mention our professional communities and the sort of care people might receive as a bereaved person from hospitals, primary care teams and mental health services. Bereavement represents a serious mental health issue or diagnosable difficulty for up to 7,000 people every year. We need to be able to provide the right care for this group of people.
We would like to see bereavement included in any national strategy framework. Any strategy should ensure there is scope to go beyond the Department of Health and include other Departments.
Thank you. I wish to apologise for the absence of Deputy Ó Caoláin who cannot be here this week, but I will report everything to him.
I have just a few questions. A suggestion has arisen with regard to end-of-life-proof homes. Would this be useful for children with life-limiting illnesses or are their lives so different that this would not be of much use to them? Bereavement is difficult. Do the witnesses think there should be more psychological and social supports available. Palliative and bereavement care are not the same, but there is a substantial link between them. Bereavement care is probably a neglected area. Do the witnesses believe there is a need for more people in the health area to receive specific training to deal with this? If so, how many trained people are required?
It has been clearly illustrated that Travellers are not currently well predisposed towards dying at home or spending time in a hospice. Also, staff in these centres are not used to Traveller behaviour towards a dying person. Mention was made of the need to train staff. What should such training involve? More research is also required and there is a need to work with those at the end of life to ensure the best information possible is obtained regarding their psychological state. How would this work be carried out and to what extent?
There is an inconsistency in regard to bereavement counselling. I am aware of bad experiences people had when they went for bereavement counselling, including myself when my wife died. Therefore my question concerns training of bereavement counsellors. This goes back to my other concern and campaign in regard to the registration of psychotherapist and counsellors and the looseness around that. Will the witnesses comment on this?
Ms Orla Keegan:
I will start. Training is fundamental to bereavement care. For a start, many of our ways of thinking about bereavement have changed rather radically over the past 20 years or so, and those already in practice may not be up to date. There is a top-up of bereavement training required. The variety and regulation of counselling and psychotherapy is one issue and then within that issue, there is how the individual counsellor demonstrates that he or she has a bereavement competency, and that is the piece on which we can work from a bereavement perspective.
Ms Orla Keegan:
Absolutely. At present, practitioners call themselves counsellors and they may have a special interest in bereavement. They do not have to demonstrate a competency in it. No doubt there are situations where persons are not well served by the encounters in which they engage. Ironically, some of the volunteer bereavement support services would be much better trained and could be better able to demonstrate their competency because of some of the systems of best practice that they have in place. No doubt there really is much more to be done.
Dr. Paul D'Alton:
I would raise a note of caution around bereavement counselling being required after the loss of someone. I really would be very cautious that we would give the message that anyone who experiences the death of a loved one needs to see a bereavement counsellor or psychologist. That is not the case. It comes back to a question that was raised in terms of a whole-system approach. We do not need necessarily to be focusing on specialists or specialist training, but we need to be thinking much more globally about how we as a culture interact with the loss of a loved one. It is unhelpful to put out the idea that when we lose someone we love we need to go and see a specialist. We do not. There are clear guidelines on when it is necessary. I constantly say to patients and family members that within the first year of loss one is quite entitled to do whatever one wants psychologically and if, in 12 months time, one is getting stuck there, then it is time to go and see someone. It is a little about the specialisation. We specialise loss, and that is not what we want to do at all. Coming again to the whole-system approach, in any setting, be it in nursing care or the training of doctors, we need to think broadly, and not so specifically, about skilling staff.
The other question that came up was around the research agenda and including those who are dying. We have a programme-of-research stream in St. Vincent's called Living with Dying. We have conducted three pieces of research where we have spoken to patients at the end of their life about their experience, first, of dying in an acute environment. Not to be insensitive, it is about going to the customer or person who is receiving the care, in this case, in an acute environment, and asking him or her about his or her experience, and that experience then informs our clinical practice.
Dr. Regina McQuillan:
I echo a little of that. On bereavement counselling, it is the idea that grief is normal. Ms Siobhán O'Driscoll, a social worker who worked at Beaumont Hospital, demonstrated this idea that a small number of persons will need counselling, a smaller number might need some psychological help and a very small number will need psychiatry help. It is about having this idea that within a society, it is normal to be sad when somebody dies and crying is normal rather than abnormal.
On what Dr. D'Alton said about the idea of engaging with those who are dying, who have progressive fatal illness or who are receiving palliative care services, it is important to do the research in that area and one one must bear in mind that sometimes patients do not want to think too far ahead and do not want engage in it.
I want to return to one question mention about Travellers but the Chairman may want to continue on bereavement.
Dr. Regina McQuillan:
There was mention of Travellers and how the organisations manage. Hospices are probably better able to deal with Traveller families and crowds than are hospitals, first, because they are smaller and, second, because they are more flexible. Sometimes the issue for Traveller families when they come into hospitals is that it is a big organisation which has many other matters to manage, and they can be more of a difficulty within hospital organisations. One of the points that came from the International, Access, Rights and Empowerment, IARE, study is that maybe hospitals where there is a large catchment area of Travellers need to have more specific training and induction for staff in those areas so that they have a better understanding that there is a bigger Traveller population here. Even though not that many Traveller patients may go to them, hospices, because of their flexibility, are probably better able to deal with it.
Mr. Odhrán Allen:
I would echo what others have said before me. To elaborate, in the area of bereavement counselling, I touched on the area of disenfranchised grief. For lesbian and gay people, that is definitely a feature that comes up in bereavement counselling. That can complicate the grief of gay and lesbian people when their grief is not seen as the same as the grief of a man who is married to a woman or vice versa. That is something of which bereavement counsellors need to be aware.
It is useful to also mention the issue of multiple loss and how that can complicate the grief experiences of LGBT people, particularly gay men who would have experienced multiple losses in the 1980s and 1990s resulting from HIV and AIDS. Then, when there can be a later bereavement, that background experience of multiple losses can complicate the grief, particularly of gay men, because they may not have dealt with such multiple losses. The literature would talk about the almost post-traumatic stress disorder like presentation of some gay men when they are bereaved of a partner because of the background experience of multiple losses in the 1980s and 1990s. It is an interesting point.
I was struck by what Mr. Allen stated in his presentation about the issue of a retirement community for LGBT persons. Have there been advances in that model being unfurled or developed, or even in its embryonic stage?
Mr. Odhrán Allen:
Not that I am aware of. That idea of having a retirement community that would be for LGBT people or a nursing home that would cater particularly to LGBT residents came from a fear of being placed in a traditional nursing home that would not cater for persons' identity or would not be respectful of them. That is the real underlying issue. In terms of establishing those retirement homes, I am not aware of any development in that area.
I suppose the real issue is, why do people want that? It is fine if they want it and it is fine to establish those, but in terms of trying to have mainstream services cater to all service users, the real issue is to look at nursing home care and how we need to modernise nursing home care so that it is fully inclusive of all those who would be using the services.
I will ask one other question on that, given that I am a member of the LGBT community. In the context of the palliative care and end-of-life care for men and women who are in the LGBT community, has there been a perceived changing of attitudes in terms of next of kin given that we have seen the changes in civil partnership? Is that filtering down into the day-to-day running of wherever?
Mr. Odhrán Allen:
I think so. Before the establishment and introduction of civil partnership for gay and lesbian couples, this is an issue that used to come up all of the time for people because next of kin is not defined in law. The Civil Partnership and Certain Rights and Obligations of Cohabitants Act 2010 has been hugely helpful in clarifying that. It has also added a cultural shift, that increasingly will take whoever the person states is his or her next of kin as his or her next of kin.
It is also useful to put on the record that there was an interesting piece of research carried out. It was funded by the Irish Hospice Foundation and the Irish Cancer Society, and GLEN and the HSE supported it. Dr. Paul D'Alton was very involved in this. They produced an excellent report called, "Five Things You Need to Know". It was based on a pilot training project carried out in palliative care and oncology services.
Staff are invited to participate in very short and intensive training for a period of 45 minutes, either before work or at lunchtime. This was pre and post-evaluated and it was deemed to be a very effective way of helping people to overcome language barriers and knowledge gaps. Perhaps Dr. D'Alton might say a few words on that matter in the context of services.
Dr. Paul D'Alton:
The programme we ran a couple of years ago was aimed at upskilling medical and nursing staff working in the area of oncology and palliative care. We trained 102 health care providers at St. Vincent's and Beaumont hospitals and St. Francis's and Harold's Cross hospices. At the end of the training process there was a significant shift in the level of confidence in providing care for members of the lesbian, gay and bisexual community. Working in St. Vincent's Hospital I had probably seen some of the most dedicated nurses and doctors delivering care to patients, often towards the end of life. It was the lack of confidence which sometimes got in the way in this regard. It was this lack of confidence with stymied conversations between patients and staff on partners, boyfriends or girlfriends. This was only because of an intention not to hurt, but then the silence sometimes led to hurt. The programme has been very successful and published internationally, with recommendations to the effect that all health care service providers receive similar training. However, it is important to view it in the context of wider training needs. Ms Keegan drew the committee's attention to the forthcoming competency framework in palliative care. This framework will cut across all disciplines providing care. It will also detail skills required at particular levels. This is the idea of moving away from specialism to a whole-system approach. The competency framework will provide a way to devise and plan undergraduate and postgraduate training.
Where does religion fit into the end-of-life care scenario? It is a massively contentious issue or is that no longer the case?
I was struck by Dr. D'Alton's comment on the tyranny of positivity. Will he develop that point? My brother was diagnosed with cancer earlier this year and we were informed that we should always be positive about his condition. I hate to say it but even though a person may look unwell, one will tell them that he or she looks fantastic. Thankfully, my brother has emerged from his ordeal, but when he looks at certain photographs, he asks why we never told him he looked so bad. Is it better to tell people that they do not look great or does it make any difference one way or the other?
Will our guests reply to my general question on religion first before responding to that on positivity?
Mr. Odhrán Allen:
In the most recent census 2% of those aged 55 years and over stated they had no religion, while 98% stated they did. Of those who took part in the visible lives study, 50% stated they had no religion. This was very much linked with their negative experience of formal religion in Ireland. The religious ethos of nursing homes and end-of-life services was specifically identified as the major reason for people being afraid of being placed in nursing homes or availing of health services. The people in question were concerned that religious ethos would impact on good practice, that there would be an underlying lack of acceptance or respect for them or their relationships and that there would be a lack of involvement on the part of their partners. Religion definitely arose as an issue for older LGBT people.
I wish to comment on a matter in respect of which I carried out some research. I refer to miscarriages and stillbirths. Many years ago I was involved in a campaign to have stillbirths registered and I am aware that the level of grief which accompanies a stillbirth is the same as that accompanying the loss of a child. However, there is no response from friends or whomever and there is no opportunity - outside of one's family or perhaps one's partner - to deal with the bereavement. Stillbirths and miscarriages are extremely traumatic. I am not seeking a comment from our guests on the matter, but I wished to place the information I have related on record.
Dr. Regina McQuillan:
In the context of how religion might help people, it gives general clues about people's belief systems and how they behave. However, there is also the individual aspect. For example, someone might state he or she is a Catholic and he or she might subscribe to some or all of the teachings of that church. He or she might find some of these teachings comforting, while he or she might find others quite terrifying. Pre-Vatican II Catholics find the entire experience very terrifying because they are expecting a vengeful God. Post-Vatican II Catholics tend not to be terrified. I am aware that I am covered by privilege, but I am still not sure whether I should be saying all of this.
Dr. Regina McQuillan:
Yes. It is a question of whether one expects a loving or a vengeful God. If someone is a Buddhist, it comes down to how committed he or she is to that religion and the notion of dying with a clear conscience in the face of an aggressive fatal illness. I suspect that one cannot do the latter. There is then the old dilemma about what people believe and what they want. An issue may arise where a patient is of one religion, while his or her family is of a different one. We must consider how to manage matters in such circumstances. Religion is important but so is people's spirituality and what it is that gives meaning to their lives. One is trying to figure this out for people.
A resource which the HSE has developed is a guide for people of different cultures. I should know the name of the document, but I cannot recall it. I am involved in trying to develop it into an app in order that it will be available to those who need it. The document is a guide on culture and religions and provides information on the beliefs, etc., that are important to people at different stages of their lives. It should be easily accessible for health care staff. One is obliged to ask people who are their next of kin, what gives meaning to their lives and whether they are religious and want to see a priest. I have dealt with Bosnian Muslims who did not want to see imams because they stated they were all Arabs. Although they are Muslims, they saw the cultural identities of the imams overtaking their religious identities and also colouring any support they might provide.
Dr. Paul D'Alton:
Dr. McQuillan has raised some important issues which arise in my clinical practice when working with LGBT patients towards the end of their lives. This connects with what Dr. McQuillan stated about people's experiences of religious institutions and religious education. At the end-of-life stage that notion of a very vengeful or judgmental God can become very active. Many patients are dying in hospitals or hospices that are run by Catholic organisations. This is going to become more of an issue in the future when women who spent much of their lives in Magdalen laundries and will come to die in facilities run by organisations that may have been involved in their earlier treatment.
On the cult or tyranny of the positive, this issue has major implications for people's psychological well-being. It also has huge implications with regard to the culture of death in this country. There is a pseudo-psychological belief that one's attitude will change the course of one's disease. That is simply not true. There is no conclusive evidence which indicates that one's mental state will change the course of one's disease. However, this belief has gripped people and, quite frequently, leads to their becoming isolated. Members of the same partnership or family often become terrified of opening up a conversation as a result of the belief that if someone observes that matters are not going so well, it will have an impact on the course of the disease. We need to be very careful about the language used. One sees evidence of this in newspapers all the time. If someone well known dies, it will be stated he or she lost his or her battle or gave up the fight. We need to be very careful about such language and also about the term "keeping positive". The language to which I refer creates a psychological experience, which is often one of isolation. To return to what I said, we know that in creating a culture where people die well we must ensure relationships are maintained. Relationships are what keep people well and all of the research indicates this to be the case. The cult of the positive interrupts this. We, therefore, need to be very cautious.
Ms Orla Keegan:
The point has been made that religion can work in two ways - that it offers solace to some people who have been bereaved, while others have a sense of being abandoned. It is not a one-on-one cause and effect scenario.
The other point is related to the model of bereavement support that is primarily provided in the community. Many of the voluntary bereavement support structures in the community have religious roots, which is appropriate provided people are aware of it. Some will opt to use a support and befriending service, rather than a counselling service that has a religious ethos. I can link this with the theme of nursing homes and the general work we are doing, through the Irish Hospice Foundation, in residential care settings in examining how end of life is approached in such settings. One of our programmes is entitled, What matters to me, and, again, it does not make assumptions. The person is approached with a view to finding out what is important to him or her in respect of religion, spirituality or other matters.
The issue of miscarriage is very important as it is a loss that can revisit people in later life. It is not only a matter of how that loss is managed through our communities and health systems. In terms of maternity hospitals, only the specialist hospitals take a formal, resourced approach to dealing with miscarriage and pregnancy loss. Much work needs to be done in this area. The maternity hospitals and units recently met as a network to share information on what they were doing well in this area and what additional support they required. Research carried out in a rural Irish hospital and recently published in the British Journal of Social Work shows just how excluded mothers who have experienced miscarriage and pregnancy loss feel. Hidden grievers, although primarily mothers, also include fathers. This issue is very much worthy of note.
On the issue of research, some longitudinal research studies are taking place in Ireland. Two studies, the Irish LongituDinal Study on Ageing, TILDA, and Growing Up in Ireland, provide an opportunity to trace the natural course of loss and bereavement. We could probably do more on this issue and in our approach to dying. Rather than recruiting people to participate in studies when they are in particular circumstances, it is preferable to include their views and experiences as they occur.
I thank our guests for coming before us and making their presentations. I apologise for the stop-start nature of the meeting; democracy in the House means that we must suspend proceedings to enable members to vote.