Kathleen Lynch (Cork North Central, Labour) | Oireachtas source

I thank Senator O’Donnell for provoking this conversation that we all have inside our heads every day of the week but seldom have out loud. I welcome those in the Visitors Gallery who are connected with the Irish Hospice Foundation and the delivery of palliative care. Many Members will have heard me say before that palliative care is not necessarily immediate end-of-life care.

We all have our stories and they are not always about older people, as Senator Mary Ann O'Brien said, which I understand perfectly. It is not always about the very young either but crosses the whole of life.

I met a man by the name of John Murphy through looking for housing and we became very good friends. He dipped in and out of the palliative care service for ten years as he had difficulties with pain management or surgery. It gave me a different insight into what palliative care was as opposed to what we thought it was, for the last month or week of life. He eventually died on the morning of St. Stephen's Day at Marymount hospice, Cork. My sister-in-law and I had spent Christmas with him. While I am not certain any of us would ever see leaving this world as a pleasant event, in John's case it was very peaceful and dignified. That is very important to every one of us and it is especially important to those who sit and wait that that dignity and respect be maintained. We are not discussing somebody just transitioning but someone whom we loved, understood and with whom we had a relationship leaving this world. It is very important to say it is not just about that short time at the end.

My father-in-law died recently in an acute hospital. He was cared for by a palliative care consultant. While he did not receive the type of intensive attention one would get in a hospice, very clear advice was available and pain and discomfort were alleviated. While we are not making as much progress as we would like, we are making some and training people. Senator Feargal Quinn's question is apt. If we are to have advance care directives and capacity legislation which we will shortly, more people will opt to end their days at home. What part will GPs play in that regard? Because they are the ones who know us best and who have probably treated us all our lives, they are a key and essential element.

I thank each of the contributors. Each person has a different story, which is important. As Senator Marie-Louise O'Donnell said, one size does not fit all because each story is different, with different family and community reactions. I thank Senators for raising the issue.

Bereavement is a part of life which, unfortunately, affects each and every one of us and something to which we can all relate. Few other events in life can leave a person as bruised, confused and, often, angry and few test our personal resources more thoroughly than the pain of losing someone close to us. Where a child is lost or a person is taken through suicide, the pain for those left behind defies description. Any instance where a person's death is sudden or unexpected, for example, in road accidents, as Senator John Whelan said, or through any other accidental cause, will leave families and friends in shock, disorientated and bewildered. We can all relate to this. The bereaved often do not know where to turn. Senator Marie Moloney made a recommendation on undertakers and the type of information they hold because they are the people to whom we go, no matter how we choose to deal with our loved ones. I commend the Senator for drawing attention to these issues by proposing the motion. I will forward her suggestion to the division to see where it can go. The motion correctly highlights the range of issues bereaved people face every day. Not only must they come to terms with intensely personal grief and loss and the immediate practicalities of funeral arrangements, but they often face legal issues, financial worries and a plethora of other issues as they try to reconstruct their lives after a death.

Bereavement takes many forms and occurs in an almost infinite variety of circumstances. Levels of interaction with officials and other agencies will vary very widely, as will the nature of these interactions. The mix of supports provided will vary dramatically from setting to setting and from person to person and any given intervention may be entirely unrelated to others. This is to be expected, given the number of people and agencies involved and the range of issues arising. It is critical that all agencies constantly review what they do to support the bereaved and other groups who are vulnerable or find themselves under pressure and constantly strive to improve and strengthen what is provided. This will require co-ordination across measures in some cases and individual responses to be tailored in others.

While palliative care is primarily directed at the person who is dying, it is also perhaps the greatest support we can provide for those close to the dying person, as what they want more than anything else is for their loved one not to suffer. Many people in Ireland have as good a death as it is possible to have. The hospice movement is well developed compared to elsewhere. There is general acceptance of the philosophy of the hospice movement, which is to enable people to live as full a life as possible right to the end, with dying seen as part of a continuum and a process rather than an event at a single point in time. As well as caring for the person who is approaching the end of life, palliative care also provides support for families and this care continues after their loved one has died.

It is the intention of the Government that all dying people will be provided with the type of palliative care services that they need, regardless of what diagnoses they have, how old they are or whether they die in a hospice, an acute hospital or at home. I had a very fruitful meeting with the Irish Hospice Foundation which operates on a 32 county basis. I asked the question about older people in care homes being moved to acute hospitals. I was told there was a new protocol whereby most people in care homes, if possible, were allowed to die in that setting, which they now call home. That is another progressive and welcome step.

The HSE is working with the Irish Hospice Foundation on the hospice friendly hospital programme to ensure the principles of hospice care are incorporated into the care provided in acute hospitals and residential homes. Most palliative care consultants work across acute and hospice settings and also with community home care teams; therefore, there is already much ongoing collaboration to ensure patients and their families receive a seamless service. It is equally important, as Senator Mary Ann O'Brien said, that the three substantial charities operating in this area co-operate. Their learning and experiences are different and sharing expertise within the three will be beneficial. There is very good co-operation and engagement between the HSE and voluntary organisations, for example, with voluntary hospice organisations in Waterford, Kerry, Wicklow, Galway, the midlands, the north east and Mayo-Roscommon, to address the gaps in service provision.

While I do not want to impose a long list of statistics on Members, some performance data from the HSE for 2013 are worth mentioning. They show that almost 95% of patients received a specialist palliative in-patient bed within seven days, while 99.5% received the service within one month. Again, improvements can be made. All HSE areas have community specialist palliative home care teams in operation. On average, 3,234 people accessed these services each month during 2013, a 10% improvement on the figure for 2012. Some 87% of patients received specialist palliative services in their places of residence within seven days, while 99% received the service within one month.

A national policy was published in 2009 to set out a clear strategy for the development of an integrated palliative care service for children and their families, across all care settings, which included the establishment of a national development committee.

The national development committee, the membership of which includes representatives of statutory, voluntary and professional bodies and parents, has established a number of working groups to progress policy recommendations, including the development of a model for hospice at home care. This is being done in partnership with LauraLynn, the Milford Hospice and the HSE and three pilot locations have been identified.
Eight children's outreach nurses are now in place with the assistance of the Irish Hospice Foundation, for which we are very grateful. The nurses work to identify the needs of each child and ensure families are appropriately linked with local services. They are located in Drogheda, Limerick, Waterford, Temple Street and Crumlin in Dublin, Mullingar, Cork and Galway.
In 2010 the Economist Intelligence Unit ranked Ireland as having the fourth best developed palliative care service out of the 40 countries surveyed. The 2001 report of the national advisory committee on palliative care recommended that bereavement support be an essential part of all specialist palliative care programmes and available in all settings where specialist palliative care was offered. In 2013, 8,751 episodes of bereavement support were provided for 2,233 families through adult specialist palliative care services. In addition, 72 families received bereavement support through the children's outreach nurses and Our Lady's Children's Hospital Crumlin during the two months of January and February this year.
The HSE is in the final stages of producing a palliative care comprehensive framework which sets out the core competencies as to the required knowledge, attitudes and skills across ten health care disciplines. One of the areas of care addressed is loss, grief and bereavement. The framework, through its implementation, will ensure the provision of bereavement support is enhanced across all care settings, including in the community, nursing homes, hospitals and specialist palliative care units.
Another palliative care service improvement being undertaken by the HSE is the development of an initiative entitled, Towards Excellence in Palliative Care. It consists of eight quality assessment and Improvement work books which will be used to assess specialist palliative care services against the national standards for safer and better health care.
One of the essential elements relates to maximising quality of life and support in bereavement, including the development of bereavement plans. Other supports and advice are also offered to those who find themselves bereaved. The National Office for Suicide Prevention which is based within the HSE is working to develop formal and structured partnerships between voluntary and community organisations and the statutory sector to support and strengthen community-based suicide prevention, mental health promotion and bereavement support initiatives and to fund a range of very important initiatives in these areas. The office provides funding for Console, a registered charity that provides one-to-one counselling for those bereaved by suicide. Console has centres in Dublin, Cork, Galway, Limerick and Wexford. It also publishes a directory of bereavement support services which range from local support groups, self-help groups, voluntary or community groups and larger organisations with multiple branches.
Reach Out, the national strategy for action on suicide prevention 2005-14, will come to the end of its ten-year term this year. My Department and the HSE are developing a new strategic framework for suicide prevention for the period 2015 to 2018, building on the comprehensive work delivered under the current Reach Out strategy. The aim of the new framework will be to support population health approaches and interventions that will assist in reducing loss of life through suicide, while aiming for improved co-ordination and integration of services and responses in this area. I have recently approved the establishment of a planning oversight group and five advisory groups covering research, policy, practice, engagement and communications and media to drive the process and they have commenced their work. The new framework is expected to be in place by the end of this year.
The Department of Social Protection and the Revenue Commissioners will advise families on where they stand as regards entitlements and whether liabilities arise. The staff of these Departments and other public agencies will be as sympathetic as possible to bereaved persons and try to smooth the way for them as much
as they possibly can. I take on board what Senator Marie Moloney said, that once people have the information in their hands, they can read it at their leisure when they get home.
The Citizens Information Board is an excellent resource, too. It provides general guidance and very useful contact details and linkages to both public and voluntary agencies which can help at this time. In 2013 the board issued a publication entitled, Information for those affected by bereavement. It provides information on dealing with the practical and material matters that arise following a death. The Irish Hospice Foundation has provided a series of short, simple information leaflets aimed at the bereaved and those who support them. A document entitled, Finding your Way, has been published by the PARC road safety group. It is a guide for victims following the death or serious injury of a loved one in a road traffic collision. There are many other bereavement services and support groups throughout the country, both public and private. Information on organisations providing bereavement support is available from the Child and Family Agency.
An issue which, unfortunately, can arise for dying people is that of mental capacity. This is a particularly painful and difficult issue but one which cannot be ignored. Accordingly, the Government made a commitment in the programme for Government to develop a modern statutory framework to support decision-making by adults who had difficulty in making decisions unaided. In this context, I am glad to say we published the Assisted Decision-Making (Capacity) Bill 2013 in July that year which constituted a fundamental reform of the law in this area. The outmoded legislation will be repealed. Wardship will be abolished. The Bill proposes a series of guiding principles designed to safeguard the person's autonomy, where possible, and ensure the person's will and preferences can be at the heart of decisions concerning his or her life. It proposes a series of support options for situations in which decisions have to be taken on behalf of an individual. However, it requires that those taking decisions on behalf of another person are obliged to respect his or her wishes, where known. It constitutes a major step forward in protecting the rights of vulnerable adults, including those reaching the end of their lives. It passed Second Stage in the Dáil in December 2013 and will shortly be considered on Committee Stage.
An advance health care directive is a statement made by an individual with capacity setting out his or her will and preferences regarding treatment decisions that may arise in the future in the event that he or she lacks the capacity to provide consent or refusal for these treatments. On Tuesday, 4 February 2014, the Government approved the publication of the draft general scheme of the advance health care directive provisions for the purposes of public consultation. Following on from the consultation process, the advance health care directive provisions will be incorporated into the Assisted Decision-Making (Capacity) Bill 2013 on Committee Stage, in line with a Government decision made in 2013. It is envisaged that the Bill will be taken on Committee Stage in the coming months.
The work that has been and continues to be done to support people who are bereaved demonstrates the priority the Government attaches to this issue. This will continue to be the case for all public agencies which have a role to play. For my part, I will ensure the issues which fall within my remit will be given the priority they deserve. I will also ensure those who are approaching death and those who are left behind when a loved one departs will always remain our central focus.
I wish to add the following. Even with advance health care directives and knowledge of a person's will and preferences, in my discussions with people who operate at that end of the scale - it was interesting to hear Senator John Crown's contribution - they have told me that it will be very difficult to override the insistence of families at the point when they say, "Hold on a second, she never discussed that with me." That will be very difficult to deal with. As Senator John Crown rightly said, we need an education piece. I hope today's exercise has made a contribution towards educating people in this regard.