Rónán Mullen (Independent)

I move:

That Seanad Éireann;

noting—

- the publication of the new Quality Standards for End-of-Life Care in Hospitals;

- that the majority of people now die outside the home, usually in some form of hospital;

- that the first National Audit of End-of-Life Care in Hospitals indicated that the great majority of patients had been admitted via emergency departments and that one fifth could have died at home if sufficient supports were available;

- the lack of single rooms and private spaces in our hospitals;

- the significant regional deficits in hospice and bereavement support services;

- the report of the Forum on End of Life initiated by the Irish Hospice Foundation which reflects Ireland's views, values and concerns regarding dying, death and bereavement;

considering—

- the potential for more people to die at home rather than in hospital;

- that hospice care is more cost effective and delivers better quality of care;

- the lack of guidelines in some hospitals regarding end-of-life care;

- the need for more training of hospital staff in end-of-life care skills including bereavement support;

- the need to ensure that "no one should die alone, frightened and in pain";

- the need to improve the physical environment of hospitals for people facing end of life;

- the recognition that end-of-life care extends into bereavement care for those affected by death;

- the need to ensure when people look for bereavement support they get the most appropriate help and not just the help that is available;

calls on Government to:

- develop measures to allow people die in their homes rather than in hospital, where this is their choice;

- allocate resources so that more people can access comprehensive hospice services in their community;

- ensure that national guidelines are operational in all acute and community hospitals to address all key end-of-life care issues;

- develop systems to enable effective gathering of data on deaths in hospitals;

- ensure ongoing auditing of end-of-life care and the introduction of a system for review of deaths in hospitals in which bereaved families can participate;

- ensure training for health care and support staff in end-of-life care skills, bereavement support and advance care planning;

- establish a grants fund to support projects which will enhance the environment of hospitals and other locations where people face the end of life; and to

- develop and resource a comprehensive end-of-life care strategy for Ireland which will incorporate and update the work of the National Advisory Committee on Palliative Care (2001) and the NOSP Petrus Review of Bereavement Support (2007).

Ba bhreá liom i dtosach báire fáilte a chur roimh an Aire Stáit. We may not wish to admit it but as legislators and as a society in general we are sometimes guilty of overlooking those whose voice is meek or who may have no voice at all. We are accustomed to hearing calls to protect the vulnerable and to respect the dignity of all human beings, yet we are not always willing to follow the logic of these principles. This is especially true where a given context provokes feelings of unease and uncertainty; so it is with the context of death and dying where our own anxiety about these issues may prevent us from giving sufficient thought to the reality that thousands of people are currently living their end of life.

Despite this and the fact that all of us have had some experience of a loved one living out his or her last days before our eyes, our society does not pay sufficient attention to the welfare and good of those who receive end-of-life care. Implicit sometimes in our thinking on this issue is the view that policy focus should centre on those with the majority of their lives ahead of them; that dying is a taboo subject better skirted around for the sake of avoiding awkwardness and offence; and that as people gradually lose memory, consciousness, bodily control and even hope, they also lose their dignity.

It is vital that these attitudes do not determine our thinking on end-of-life care. Dying is one of the most profound life experiences any person will ever go through and the level of end-of-life care afforded to a person should not be in any way contingent upon how young or old they are. Our understanding of what dignity means is crucial to a proper attitude towards dying and end-of-life care. For some, dignity means status, and people have dignity in accordance with how powerful they are, how much money or life they have, how conscious they are, how able-bodied they are or how well they are able to relate socially to others. In that view, when a person loses any of these factors, some dignity is lost.

This is emphatically not the understanding of dignity to be found in the great humanitarian text of our time, the Universal Declaration of Human Rights. There, dignity is understood as inherent in every human being as the basic and absolute value underpinning the fundamental human rights of all persons, regardless of distinction or status. Human dignity, in the context of human rights, is inviolable and irrevocable. It cannot be taken from a person.

Our actions may fail to respect fully the dignity of others but such dignity is never lessened. Human dignity ensures that no person is ever, to use a vulgar term, simply a "vegetable". This understanding of dignity - the true understanding - has its roots in Cicero and has been mediated to us today by a Renaissance humanism, Kantian moral philosophy and Judeo-Christian theology. Despite the intellectual attacks by Marx and Nietzsche, and against the atrocities of two world wars, human dignity survived to become the central concept underpinning human rights law in the 20th century on both the international and constitutional levels, and we would do well to acknowledge that our own Constitution blazed an important trail in this regard.

The question before us is how we respond to human dignity in the context of end-of-life issues. A minimalist approach will not suffice and we should not settle for simple minimum care such as the provision of nutrition or hydration, minimum pain relief such as that the person never screams but always hurts, minimum consultations that only occur after important decisions have been made on behalf of a patient or family or minimum compassion such as treating the person as just another patient or medical case and not as somebody going through a momentously emotional and spiritual stage of life.

Considering home end-of-life care, how can we apply the dignity of that concept to practical effect? We can begin by acknowledging the right of persons to receive end-of-life care in their own homes. Currently, two thirds of people die in some form of hospital, although at least a fifth of those persons, according to doctors, could have died at home if appropriate community supports were made available.

The hospitalisation of dying does not meet with the support of most Irish people. A 2004 survey found that given a choice, only 10% of people would prefer to die in a hospital and only another 10% would prefer to die in a hospice. An overwhelming majority of Irish people would choose to die at home and the reasons are clear. For most people home means comfort, security, family and friends; it is the natural place to live and die. No matter how good hospitals can be or compassionate hospices are, they cannot replicate the sanctity of the home for many Irish citizens.

The benefits of home end-of-life care accrue not just to the patients and families but also to the health service. There is a high number of people dying in hospitals, some 84% of whom are admitted through accident and emergency departments, and this puts unnecessary strain on hospital and accident and emergency services. The funnelling of end-of-life patients into the hospital system must change, especially as the vast majority of deaths occurring in Ireland are predictable; as their predictability allows for forethought and planning, they are more likely to be manageable within a community care framework. In order for this to be realised we must organise the service to suit patients rather than providers, allocating hospital resources to facilitate rapid discharge, night nurses and 24-hour short notice care teams.

It is true that not all end-of-life cases will be manageable within the home, and that is why hospitals, including psychiatric units, must ensure that end-of-life care is a core service on offer rather than an afterthought to more supposedly fundamental services. It is therefore heartening to see that HIQA's new draft standards for health care providers, to be introduced from 2012, make it explicit that end-of-life care ought to be a core hospital service. When the business of curing is beyond reach, the necessity of caring continues.

The figures show that end-of-life care in Ireland has some way to go before it can be considered a genuinely core service, although it is important to understand that internationally we compare fairly well. Over half of the patients profiled in the 2010 national audit on dying in hospitals died in multi-bed rooms, and only 20% to 30% received specialist palliative care, with as many as 25% dying alone. Only a third of hospitals have policies and procedures on end-of-life care, which may explain why multidisciplinary meetings were held to discuss patient care in only 44% of cases, why only 17% of patients and families were informed of the outcome of meetings at which they were not present and why only 15% of relatives were offered information leaflets on dying, death or bereavement. There is a clear need for national guidelines to be operational in all acute and community hospitals.

When I think of death I often reflect on the famous poem, "Death the Leveller", with the telling lines "Sceptre and Crown/Must tumble down/And in the dust be equal made/With the poor crooked scythe and spade." Death is a leveller that unites all of us but there is another levelling that we should consider. There are plenty of examples of best practice and there are hospital and care settings which have standards and approaches to end-of-life care. These succeed in the important business of providing end-of-life care that is both competent and co-ordinated, compassionate and communicative. The levelling we require should be upwards so that everybody should enjoy the same standard of hospice care, end-of-life care, communication, compassion, co-ordination and competence. There is a clear need for national guidelines to be operational in all acute and community hospitals.

There is also a worrying gap that should be noted and I am indebted to the Irish Hospice Foundation's audit of end-of-life care in hospitals for these challenging facts. The gap is between the levels of satisfaction expressed by health care professionals and the views of family members regarding the quality of end-of-life care treatment in Irish hospitals. When asked if the way a patient died was acceptable to relatives and families, 35% reported an unacceptable death, whereas the figure for nurses was 23% and for doctors was 20%. It should be noted in that context that at least a fifth of Irish people currently die in an unacceptable manner.

The comparative figures for pain relief are no less challenging. Some 23% of relatives - those closest to the patient - consider that their loved one had spent most of their last week in pain, whereas only 15% of nurses and 10% of doctors thought so. It is of great concern that, according to doctors and nurses, patient care is least satisfactory for patients who are frail or with dementia. We can all understand the reasons the challenges are particularly acute in such cases.

This unacceptable gap in perception between care providers and relatives suggests we have some distance to go before we can say people approaching death receive all that human dignity requires. We must bring hospitality back into hospital, not as something to be left to the discretion of individual hospital staff, many of whom deserve great credit and act with great selflessness and courage, but as a matter of established policy guidelines. We have to change the end-of-life experience. We must embrace a new phenomenology, one that encompasses such aspects as the architectural design of rooms, ease of movement between home, hospital and hospice, and the provision of proper bags into which to place the deceased's clothes, rather than a rubbish bag into which soiled clothes are sometimes put. These are practical items which say much about how we regard end-of-life care services.

There is the question of how hospital staff react when in the presence of a terminally ill patient or bereaved relatives. Far too many Irish people have had distressing experiences of their loved ones dying in an overcrowded, noisy, multi-bed ward in which privacy and respect seem to be completely absent, despite the bona fides and good will of care providers. This phenomenon has been described as "Mammy dies while Chelsea scores" and is indicative of the lack of thought put into end-of-life care in Ireland. We all have experience of multi-bed wards in which televisions compete with each other during some of the most acute and sensitive moments of people's lives. We must bear in mind that statistic, namely, that more than 50% die in multi-bed wards.

A number of years ago I had the good fortune to attend a talk given by Professor Roger Ulrich who spoke about the importance of hospital design in ensuring better outcomes. Central to the plan is that we move to a situation where we have single bed wards in hospitals. I am struck always by the comparison between hotels and hospitals. Unless we are young and in the whole of our health, backpacking and do not minding sharing hostels, we all expect as a basic minimum when we travel that we will be in a room of our own, yet how is it that when people are struggling to be well, this is not considered basic? We still have out-of-date infrastructure which oppresses people and frustrates the possibility of their being cared for in a way that fully recognises their dignity.

I commend the Hospice Foundation's design and dignity plans for a fund to help address these issues in certain places. I hope that, through the efforts of the Minister for Health and Children, whose intentions are to be appreciated, as per the recent establishment of the National Council of the Forum of End of Life in Ireland, we will see such a fund emerge, with support from the Government despite the challenges that face us.

Cén chaoi ar féidir linn dínit an duine a chur i bhfeidhm go praiticiúil i gcúram direadh saoil? Is é an túsphointe ná a aithint go bhfuil de cheart ag daoine cúram deireadh saoil a fháil sa bhaile. Faoi láthair, faigheann dhá thrian de dhaoine bás in ospidéal de chineál éigin cé go bhfeadfadh an cúigiú cuid acu ar a laghad, de réir a ndochtúirí, bás a fháil sa bhaile dá mbeadh tacaíocht pobail cuí ar fail. I suirbhé a rinneadh in 2004, níor chuir ach 10% de dhaoine in iúl gurbh fhearr leo bás a fháil in ospideal dá mbeadh an rogha acu, agus níor chuir ach 10% eile in iúl gurbh fhearr leo bás a fháil in ospís. Tá an chúis sin soiléir: don chuid is mó de dhaoine is ionann an baile agus compord, slándáil, teaghlach agus cairde.

Some of my colleagues will elaborate on other ways to improve end-of-life care in Ireland. I will briefly mention only a few. It is clear that more could be done about the proper administration of pain relief. It is neither unethical nor illegal to administer pain relief, even in large doses, once the motivation is to care, by treating pain, rather than to kill. Perhaps health care professionals are not fully aware of this distinction and see themselves as erring on the side of caution while administering pain relief. Great emphasis must be placed on "do not resuscitate" orders which allow a patient to die a natural death. In this context, I heard a story about an elderly lady who had her ribs broken during an attempt to resuscitate her.

Advance care planning, once it takes account of the ethical need for the delivery of basic and ordinary medical care, could go a long way towards respecting patient autonomy, decision making and ensuring peace of mind. Provision for such planning depends on and will strengthen communication between health care staff, patients and relatives. The systematic introduction of multidisciplinary review of death teams could strengthen the quality of care offered by the various health professionals and would help to create a culture of excellence in end-of-life care and offer relatives an opportunity to give feedback on end-of-life care to the relevant health professionals, thereby increasing accountability.

I thank the Irish Hospice Foundation, carers, the associations, clinicians, health care professionals and all those who dedicate their time and resources to serving the dignity of persons in end-of-life care. I pay a special debt of gratitude to the Irish Hospice Foundation for giving of its time, support and research informatin during the preparation of the motion. I look forward to listening to the debate with my Seanad colleagues and eagerly await the Minister of State's response. I would have preferred to have been in a position to discuss with the Government its proposed amendment. I am disappointed that it proposes the complete deletion of what I have prepared. It is always good to give credit where it is due, but that need not prevent us having a fruitful debate, during which I hope we will arrive at intense agreement. We should do so, given that it is a common experience to face death and be the carers and loved ones of those facing the end-of-life experience.