Jerry Buttimer (Cork South Central, Fine Gael)
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I have received apologies from Deputies Regina Doherty, Eamonn Maloney, Caoimhghín Ó Caoláin and Robert Troy and from Senator Imelda Henry. I remind members to keep their mobile telephones turned off or in aeroplane mode, as otherwise they interfere with the broadcasting of proceedings. Moreover, it is unfair to have members of staff having to listen to buzzing noises from their headphones.

Today's meeting is the second in a series of hearings scheduled to take place during November on end-of-life care. This is a very sensitive issue which affects every citizen and every family in this country. We are grateful for the co-operation of all witnesses, both those working in the voluntary sector and those who are statutorily obliged to attend. Today's delegates have diligently prepared reports for the committee, together with their opening statements which will be of six minutes duration in each case.

I welcome Dr. Paul Gregan, chairman of the Irish Hospice Foundation's primary palliative care initiative; Ms Mary Burke, chairman of Nursing Homes Ireland; Ms Anne Tan, clinical nurse manager and member of the Institute of Community Health Nursing; Mr. Gerry Martin, chief executive officer of the Alzheimer Society of Ireland; and Professor Declan Walsh, professor of palliative medicine at Trinity College Dublin and University College Dublin. I also welcome the representatives of different groups and organisations who are in the Visitors Gallery today.

I remind witnesses that they are protected by absolute privilege in respect of the evidence they give to the committee. However, if they are directed by the committee to cease giving evidence in regard to a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of that matter. Delegates are directed that only evidence connected to the matters under discussion should be given and are asked to respect the parliamentary practice to the effect 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 and ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or any official by name or in such a way as to make him or her identifiable.

I sincerely welcome all our guests and thank them for participating in our series of hearings. I invite Dr. Gregan to make his opening remarks.

Dr. Paul Gregan:

I thank the Deputies and Senators for this opportunity to address the committee on the subject of dying in the community. My name is Paul Gregan and I work half-time as a consultant in palliative medicine and half-time as a general practitioner. I chair the primary palliative care programme, which is a joint initiative set up in 2010 with the backing of the Irish Hospice Foundation, the HSE and the Irish College of General Practitioners, with the aim of identifying improvements and initiatives that would support the provision of palliative care in the community by the primary care team. I represent the Irish Palliative Medicine Consultants Association on that committee.

The real reason we are all here today is to hear about the care of those living with life-limiting illnesses in the community, and about caring for them as they die. Palliative care is very much about the living and how we manage their holistic care from a physical, psychological, social and spiritual perspective. It is also about caring for people towards the end of their lives and it is about how they die.

Care of the imminently dying is a smaller but extremely important part of what palliative care is about; much as care in pregnancy is not all about the birth, palliative care is not all about dying. After-care, in the form of bereavement care, is the continuation of care past death for families and friends involved and forms part of the remit of palliative care services.

We will all have a last year of our lives. Therefore, we all have a real stake in the quality of care that is provided to those who are at the end of their lives now. They are us tomorrow. I have three points to make about their care. The first is about prioritisation. In my work as a general practitioner, palliative care patients stand out as generally among the sickest and most in need. I suspect this is the same across everyone’s practice, whether it is medical, nursing or anything else. It stands to reason that they are therefore in a top-priority grouping for service provision and in many areas, although not in all, they are already categorised as such. For example, accessing a priority discretionary medical card for a person with a palliative care need, with a turnaround time now from application to receipt of a few days, represents a good example of excellence in care. However, not being able to access sufficient carer support when a person is deteriorating or dying, or the unavailability of equipment in the community for this priority grouping, arguably represents a fundamental breakdown in care provision. I would urge all areas of the health service to examine where they can prioritise this care. These patients should be category one in everyone’s book.

The second area is around equity. Different areas of Ireland have different access to palliative care provision. This is true in specialist palliative care; it is well documented that the provision of specialist palliative care beds is inequitable. It is also true in community palliative care at specialist levels - for example, where we have funding for five-day-a-week services instead of seven - and it is also true at generalist levels. For example, in one area there may be only five hours of carer time a week, while five miles up the road there is access to 21 hours of carer time.

Similarly, access to services by palliative care patients under the age of 65, who amount to a quarter of the patients under specialist palliative care, needs to equate to that of those over the age of 65. Arbitrary age cut-offs are not helpful in life-limiting illness. Palliative care patients deserve priority access to a standard, minimum and equitable amount of care in the community.

The third area I would like to cover is nursing. When I ask my palliative care colleagues about palliative care that could be improved upon, they prioritise nursing. The fundamental lack of provision for nursing support to patients and families ranks highest in their table of requirements. We are fortunate that we still have, by and large, a society in which families will do all in their power and ability to help a relative in trouble, but we need to meet them halfway on that and at the moment we do not. There is an urgent need to augment our nursing services for palliative care patients. We need a dedicated budget for community nursing in palliative care.

Dying is something that each one of us will do in our turn. Only one in ten of us will die suddenly. Therefore, we are in a position to adequately plan the individual care of nine out of every ten people, but we are also able to plan adequate care at population health level for those living months before dying and those imminently dying. We need to plan the care of these people. It is relatively inexpensive and it is entirely predictable. We need to do the simple things and the important things well.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. Gregan for his excellent presentation. I welcome our next speaker, Ms Mary Butler. Ms Butler is very welcome and I thank her for being here.

Ms Mary Burke:

On behalf of Nursing Homes Ireland I thank the members for the invitation to present to the committee today. Nursing Homes Ireland has made a detailed submission already. Therefore, today I will concentrate on the current challenges and possible solutions.

There have been many positive developments in end-of-life care in Ireland, especially the establishment of the Health Information and Quality Authority, HIQA, in 2009. Nursing homes are probably the most regulated area of the health service, and now HIQA has established thematic inspections on end-of-life care. The thematic inspections focus on end-of-life care and are geared at improving standards in nursing homes. Other positive developments include the provision of end-of-life care education for staff working in residential care settings for older people; the establishment of the End of Life Forum; the commencement of the Changing Minds programme; the establishment of the All Ireland Institute of Hospice and Palliative Care; and the Health Service Executive National Clinical Programme for Palliative Care. These are all very positive developments in end-of-life care in Ireland.

Some 25% of all deaths in Ireland occur in residential care settings. It has been recognised that a substantial proportion of patients who die in hospital could be cared for appropriately at home, in a hospice or in a nursing home. It is for that reason that the end-of-life care in nursing homes is very important today. It has been suggested that most people do not die at home because the majority of deaths follow a period of chronic illness. This reflects the wider need for increased consultant-led chronic disease management in the nursing home and greater communication between regular and out-of-hours GP services. It is widely recognised that there should be greater consultation with older people regarding end-of-life care and decisions regarding end of life should be made before the person enters a nursing home.

The HSE Quality and Patient Safety Audit report identified that there is greater and more consistent access to primary care team services among public long-term care patients than among those in private nursing homes. This supports the acknowledgement by HIQA that there is inadequate access to all care services, reflecting a wider funding issue in the sector. The role of the allied health professional at the end of life is widely acknowledged.

A survey of directors of nursing recently emphasised a high level of satisfaction with GP services in nursing homes. However, it was also highlighted areas for improvement, which centred around three main themes: accessibility and quality of service, service delivery, and accountability and sector awareness. It could be argued that the GP is the gatekeeper of care and is therefore in a prime position to commence discussions and plans about end-of-life care before admission to long-term care. This ensures that end-of-life care meets the resident's needs and wishes and that these can be met by the nursing home staff.

Issues have been highlighted by Nursing Homes Ireland members in regard to the provision of services by GPs. They include the charging of an administrative fee by some providers for out-of-hours service - known as Caredoc in the South, but there are many other names for the service around Ireland - refusals to visit by some GPs, and triage by telephone. Also, due to the rural location of some nursing homes in Ireland, it is difficult to get GPs in the out-of-hours service to visit.

Symptom relief at the end of life is very important. It is very important that people who are dying receive pain relief and the care they require. Unfortunately, if a GP does not call this cannot be provided. We recommend that the role of nurse prescribers be enhanced in nursing homes. Unfortunately, nurse prescribers in nursing homes are not issued with a prescription pad for prescribing medication at present. Therefore, their role cannot be enhanced.

The report Creating Excellence in Dementia Care states that up 66% of residents in nursing homes have a dementia. Due to the unpredictable illness trajectory and fluctuating capacity of residents with dementia, many clinical, ethical and legal challenges present, including recognition of the dying phase. It can be very difficult for a GP or doctor to admit that somebody is in the dying phase. This highlights the need for more specialist geriatrician input to assist and support nursing home staff in adequately addressing the needs of residents with dementia within the nursing home throughout their illness and especially at the end of life.

The nurse-led hospice at home service is an invaluable support. However, this service is predominantly during office hours and therefore out-of-hours supports are limited. This view is supported by general practitioners, who highlighted the need for greater access to out-of-hours service, particularly access to consultant-led palliative care teams.

In addition, specialist palliative care services need to be extended to all residents, not just those with a malignancy, to enable greater equity of access to care. The HSE framework document published in 2008 recommended enhancing hospice provision. This has not been achieved to date. There are large parts of the country that do not have access to inpatient hospice services and, unfortunately, some areas have to fund-raise to provide a hospice for their area.

NHI, in tandem with many other stakeholders, is extremely concerned at the narrow definition of long-term residential care services under the nursing home support scheme. The former Ombudsman, Emily O'Reilly, highlighted this anomaly on a number of occasions and in reports. In respect of restrictions for residents in private nursing homes or access to appliances and aids, some of these items are not provided or reimbursed under the primary care reimbursement service. Equipment such as syringe drivers, nebulisers and oxygen masks cannot be reimbursed. Therefore, it falls under the cost of care for caring for people at end of life in nursing homes. The physical environment of many acute hospitals and public long-stay facilities is not the ideal setting for people who are dying. People who are dying deserve private rooms. In private nursing homes, 67% of rooms are private.

The recommendations made by NHI are that the HSE publish the findings of the quality and patient safety audit on primary care team services and outline the actions taken to address the deficits. A formal mechanism for GPs to communicate with out-of-hours services should be implemented without delay. The role of the GP in providing services to residents in nursing homes should be clarified and this should be done in tandem with a full review of the GP contract and education for GPs involved. Registered nurse prescribers working in private health care facilities should be issued with a prescription pad and enabled to prescribe medicines for residents with medical cards. There should be an increase in the number of geriatricians nationally to improve access to diagnosis and chronic illness management in the nursing home. This will prevent the unnecessary transfer of residents to acute hospitals. The hospice at home service should be extended to residents with non-malignant terminal illnesses and should provide for out-of-hours access. Access to consultant-led palliative care teams should be made available to residents with non-malignant terminal illnesses, not just to cancer patients.

The priority actions identified in the 2008 HSE palliative care services framework should be implemented as promised to enhance the access to inpatient and respite hospice services nationally. A Department of Health-led forum or expert group on long-term care, where all the key stakeholders come together and work on a common goal, which is to improve quality of care for residents in nursing homes, should be established. Consideration should be given to the prioritisation of palliative care patients on the fair deal waiting list to facilitate death in a more appropriate place. Unfortunately, people are on a waiting list of nursing homes at end of life and by the time the bed comes up, they have passed away. Legislation pertaining to advanced care directives should be introduced in Ireland. Currently, there is no legislation on advanced care directives. There should be a public awareness campaign and tailored education for health care professionals prior to enactment of the Assisted Decision-Making (Capacity) Bill. Immediate action should be taken to address the deficits and the shortage of nurses in nursing homes. I thank members for their time.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Burke for her excellent presentation. Our next speaker is Ms Anne Tan from the Institute of Community Health Nursing.

Ms Anne Tan:

I thank the Chairman and committee members for the opportunity to present on behalf of the Institute of Community Health Nursing. The ICHN is a professional and educational body established in 1985 to represent public health nurses and community registered general nurses working in primary care throughout Ireland.

Research indicates that 90% of the last year of life is spent at home, that the expressed wish of 80% of people with end-stage illness in this country is to die at home, and that only 26% of the 29,000 people who die each year do so at home. It is apparent there is a great need to improve home care services to fulfil this desired wish.

The World Health Organization definition of palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, including physical, psycho-social and spiritual problems. End-of-life care refers to the care offered to an individual when death is imminent and life expectancy is days or even hours. End-of-life care is part of what palliative care is but by no means defines it. Palliative care services may be structured in three levels of ascending specialisation according to the needs of the patient and family and the expertise of the staff providing it. Level 1 is palliative care approach. Palliative care principles should be appropriately applied by all health care professionals. Level 2 is a generalist approach where at an intermediate level, a proportion of patients and families will benefit from the expertise of health professionals who, although not engaged in full-time palliative care, have had the additional training and experience in palliative care. That would be typical of a public health nurse, community or GN and GP. Level 3 would be the specialist palliative care services, which are limited in terms of their core activities to the provision of palliative care.

For over a decade, it has been acknowledged that people with conditions other than cancer should have their palliative care needs met, and this principle has been adopted in Irish policy documents since 2001. Services for people with life-limiting diseases, including chronic obstructive pulmonary disease, dementia, heart failure, end-stage renal failure and chronic neurological disorders, are still underdeveloped and fragmented in Ireland. A key finding of the children's palliative care needs assessment was that the preferred location of caring for a child with a life-limiting condition is the family home with parents receiving adequate professional support.

Evidence shows that there are many factors that prevent patients from receiving adequate care in the community and which result in the admission of patients to hospitals, nursing homes or specialist palliative care units. The difficulties experienced by carers and relatives were more often a cause for hospital admission than those of the patients. Others found that support at home produced the strongest influence on place of death, with the need for around-the-clock, seven-day nursing care being foremost and access to specialist palliative care advice, specialist equipment, the medical card, social services and receipt of an attendance allowance all showing statistically significant effects.

Of the people who die every year at home, the majority of their care is provided by members of the primary care team. It must be acknowledged that without the input of relatives and lay carers, home death could not be achieved. Due consideration needs to given to the support and resources required by lay and primary carers in the community. Public health nurses and community registered nurses are responsible for a particular geographical area and are key members of the primary care team. They assess the holistic palliative care and end-of-life nursing needs of all patients in the community. They are responsible for co-ordinating and managing the nursing services delivered to the patient in the community, linking hospital, community and specialist service as appropriate. Resources are limited to 9 to 5, Monday to Friday, however, with only planned essential calls at the weekend and public holidays. In most areas, there is very little or possibly no service after 5 p.m and before 9 a.m.

There is emerging evidence to suggest that where people die has an impact on how they die, and that those who die at home and in the place they prefer have a better quality of dying, so to speak, than those who do not. A major inequity exists in the availability of palliative care and specialist palliative care throughout the country due to the way in which services have been developed. The institutionalisation of care at the end of life and eventual place of death does not reflect the wishes of the majority of the population. In the next decade, there will be significantly more people living with advancing life-limiting disease in the community and all of these people will require a palliative approach to their care.

I will address the dignity care intervention. The aim of this service development initiative is to implement and evaluate a dignity care intervention that will be delivered by all nurses to conserve the dignity of people at the end of life in community settings. The ICHN endorsed the palliative care clinical programme which focuses on equity of access based on need of the individual and efficient use of resources. The ICHN recommends that leadership is required from all the relevant stakeholders within service delivery, education, policy and academia; that choice of location for care at end of life should be fully supported and resourced adequately; that all patients who have a diagnosis of a life-limiting condition should have equal access to all levels of palliative care in the community; that due cognisance should be given to the roles and responsibilities of the public health nursing service-----

Jerry Buttimer (Cork South Central, Fine Gael)
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Ms Tan has one minute left.

Ms Anne Tan:

-----the ICHN recommends that there should be increased resources for paediatric palliative nursing care in the community; that opportunities for education and training in palliative care be urgently provided for all levels of staff; that there be increased access to home support, packages of care, 24-7 nursing care and specialist palliative care on call support; that access to aids and appliances should be immediately available for palliative care patients; and that health care providers promote "Think ahead – Speak for yourself".

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Tan.

The next witness is Mr. Gerry Martin, chief executive officer of the Alzheimer Society of Ireland.

Mr. Gerry Martin:

I am grateful for the opportunity to attend and to make a more detailed submission. As I represent the Alzheimer society, I will concentrate on people with dementia in connection with end of life. I will focus on four key points that summarise our submission.

Our key recommendation to the committee is to have dementia recognised in the first instance as a life-limiting condition in order that specific palliative care can be provided as part of dementia care following diagnosis to the end of life. Dementia is a life-limiting condition but often it is not recognised as such. End-of-life care and palliative interventions currently tend to focus on malignant diseases but we need specifically to include dementia as a life-limiting disease. End-of-life care for a person with dementia needs to be begin at the point of diagnosis. The trajectory of dementia is not a straight line similar to other diagnoses. It is complex and there is no cure for it. The journey begins at diagnosis, it continues and transitions to community services, possibly including an acute hospital admission, before long-term care and the onset of comorbidity. Too soon is never too soon in terms of planning for dementia and end of life.

To enable palliative interventions during the journey, we need to build capacity within current health care teams working with people with dementia. This would enable the 42,000 people in Ireland who currently live with dementia to live but also to die well. The number is projected to increase in less than 25 years, a relatively short period, to 140,000. We have the opportunity to prevent dementia and end-of-life care crises in Ireland.

We are working on the development of a national dementia strategy, which will be an important point in public policy. It is due for publication at the end of the year. It is critical in the context of this discussion that full policy recognition of dementia palliative care is contained within the strategy.

Jerry Buttimer (Cork South Central, Fine Gael)
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I welcome our final witness, Dr. Declan Walsh, professor of palliative medicine, Trinity College Dublin and University College Dublin.

Professor Declan Walsh:

I am grateful for the opportunity to speak to the committee. I have spent almost all of my professional life working in the United States and the United Kingdom and, therefore, my remarks will address the international trends in the field.

I refer to the field of palliative medicine, the physician specialty. It is a new and evolving medical specialty and its final shape and form is in evolution in terms of where it works, how it works and the various interactions it has a specialty. It is focused on people with serious or incurable diseases but its final shape and form is not decided as compared to a well-established specialty such as gastroenterology or cardiology. A major way of thinking about the management of chronic illness is to think of it in two buckets. One is the acute care system and the other is the post-acute care system of which hospice, rehabilitation and other forms of post-acute care are important components. The interaction between those systems drives much of the expense and many of the challenges in the management of chronic illness. The field of palliative medicine arose in part as a reaction to perceived deficiencies in modern medical care, for example, medical care being overly technical or impersonal in the hospital. This is starting to change because palliative medicine is becoming more of a mainstream medical specialty and that is a significant change internationally.

A patient who goes to see a palliative medicine specialist or someone who has had training in palliative medicine should expect superior skills and communication decision-making in the setting of a chronic complicated illness, excellent management of the complications of the disease and the symptoms such as pain, excellent care of the patient who is dying as well as psycho-social care of the patient and his or her family and co-ordination of the care to make sure the patient is in the right place at the right time for the right reasons. That is a significant challenge because it means the provision of services in the hospital or the community on a 24-7 basis. The current evolution of palliative medicine internationally is to go towards comprehensive integrated programmes that provide a menu of services in the hospital and in the community, which are linked, for example, by electronic medical records in order that there is excellent continuity of care between the acute care system and the post-acute care system and that the patient does not get lost in the medical care system. That, unfortunately, is a frequent occurrence with people who have complex chronic illnesses. Sometimes it emerges that nobody is in charge of the patient's care and that is one of the roles palliative medicine can fulfil.

The other major development is the so-called upstreaming concept. The idea behind this is that many people at the time they are diagnosed with an illness are diagnosed to be incurable at the day of diagnosis and, therefore, it makes sense to involve palliative medicine as a specialty early in the trajectory of the illness. There is persuasive evidence that early involvement of the specialty can reduce the cost of care, improve the quality of care and reduce length of stay in hospitals. People who have been referred to palliative medicine services early appear to live longer than those who are not referred until later in the trajectory of the illness. There are many benefits in terms of the quality and continuity of care and major economic and operational benefits for hospitals to have integrated comprehensive palliative medicine programmes.

In the context of the community, there is an inexorable shift away from the hospital into the community in medical care. This is driven by the ageing population and the realisation that hospitals can be dangerous places to be at times and people should be better cared for very often in the community setting. The explosion in modern information technology will allow us to look after people in a much more comprehensive and efficient manner in the community and we will be able to do things in the community that one could only do in the hospital until recently. This has significant implications for training, manpower in the context of the provision of specialists and generalists in the area and for returning to some old fashioned values in medicine such as the ability of GPs or specialists to visit patients in the home and so on. There are important services that need to be delivered on a 24-7 basis. There needs to be specialist back up for the community services throughout the country.

The international trends are earlier involvement of specialist palliative medicine closer to the time of diagnosis, the provision of integrated services between the acute care system and the post-acute care system to make the best use of the available medical resources in either setting and making sure the patient is in the right place at the right time. Palliative medicine is emerging as a mainstream medical specialty, which will have significant implications for the development of the field both in Ireland and internationally.

Billy Kelleher (Cork North Central, Fianna Fail)
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I thank the witnesses for their presentations. We often discuss community care and primary care.

They seem to be the buzzwords in the provision of medicine and medical care in general. However, it needs resourcing. There is no point in us saying we can roll out these programmes of support for GPs in primary and community care unless we resource it and train professionals in the competencies required to deliver that care in the community setting.

GPs are obviously central to the provision of primary care in the community. Ms Burke spoke about out-of-hours GP services. We all know that GP services are under pressure because of financial constraints, the Financial Emergency Measures in the Public Interest Act, etc. Is she experiencing more difficulties in terms of provision of out-of-hours GP services? That is a fundamental issue for the provision of care either in the home, or in nursing homes or long-term care facilities.

We all recognise the central role of the public health nurse in deciding what care is allocated to people. It is very unfair to ask professionals, whose role is to care for and nurse people, to make administrative decisions over who gets care and who does not. It is very unfair that public health nurses, who are visiting patients in the home setting, very often need to decide on the number of hours of home help, etc. It is very difficult for those people whose primary focus is on the provision of health care to make administrative decisions on patients for whom they are caring. They should be resourced to extend that whole issue.

Professor Walsh spoke about the acute hospital setting and then post-acute. While he did not mention it, there is a pre-acute hospital setting. We need to bolster what is available in the community setting so that when patients are diagnosed every effort is made to support them even in the early stages of malignant illnesses or dementia before they actually slip into the acute hospital setting. Very often the resources are put in to get them out of the acute hospital setting in a hurry to free up a bed. There seems to be no planning from diagnosis to entry to the acute hospital setting and then leaving the acute hospital to go back into the community or long-term care. Is that something we need to consider? Do we need a planned approach when a person is diagnosed with a terminal illness? While it may be some time away does a patient plan need to be put in place? Every effort should be made to prevent them going into the hospital as opposed to getting them out of the hospital when they are in the hospital.

Among medical professionals is there resistance to registered nurse prescribers or do we just not have enough nurse prescribers? What is the difficulty in providing nurse prescribers with prescription pads if they are registered to prescribe?

On the consultant-led geriatric clinical teams, we have a scarcity of consultant geriatricians and in other specialties. Do they ever visit nursing homes? Is it possible to get in a consultant-led geriatrician team to carry out an assessment of patient profile and assistance in nursing homes or are they always referred back to the acute hospitals for assessment?

Jerry Buttimer (Cork South Central, Fine Gael)
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Deputy Caoimhghín Ó Caoláin, the Sinn Féin spokesperson, has apologised for his absence today. However, Deputy McLellan is a very able replacement.

Sandra McLellan (Cork East, Sinn Fein)
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I thank the witnesses for their comprehensive presentations. We need to do much better in this area and we need to expend resources given our ageing population. Between 1996 and 2031 the number of people aged above 65 will have doubled and we need to make provision for that.

Has the Prague charter for palliative care gone on to be recognised by major international bodies, including the World Health Organization? Is it likely to become a charter to which state actors can become signatories?

How many additional geriatricians would be required to address the shortfall? It was stated that more training needs to be provided for community health nursing. What type of additional training is necessary? A point mentioned at the other hearings was the need for a stand-alone entity to deal with end-of-life and palliative care. What form should such an entity take?

Those working with people with Alzheimer's disease are heroic. Everybody knows of somebody who suffers from Alzheimer's disease. Mr. Martin said that many sufferers would wish to live their final days at home. At last week's meetings there was a proposal for end-of-life-proof homes, as it were. It is an interesting proposal. Does he believe it might help people suffering from Alzheimer's disease?

Professor Walsh spoke about a more effective use of resources in hospitals. I ask him to expand on that. How are resources currently misallocated?

Colm Burke (Fine Gael)
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I thank each of the speakers for their presentations. I also thank them for the work they and their organisations are doing. Deputy Kelleher spoke about nurses prescribing. Nursing qualification has moved on and the vast majority of nurses now have an academic qualification. We have made some changes by giving them extra duties. What do we need to change to allow them to get into the area of prescribing? Do we need to change legislation or is it just regulation?

I presume individual nursing homes have their own arrangements with GPs. Is it true that the level of care nursing homes require is not always being provided by the general practitioners in the immediate area?

The organisation of step-down facilities is inadequate. How can that be improved?

The Nursing Homes Ireland report referred to the need for a 59% increase in the number of residential care facilities, which would equate to an additional 13,000 or 14,000 beds in coming years. How can we deal with that? Do we need to change focus by putting far more into home care packages, rather than trying to achieve a huge 59% increase in a very short period of time?

Fidelma Healy Eames (Fine Gael)
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I thank the witnesses for their presentations. I do not claim to know much about this area. It is something that nearly everybody will face. Nine out of ten people will die gradually as opposed to suddenly.

How does one distinguish between palliative care and assisted dying? What is the process involved in informing families about clinicians' decisions to put relatives on palliative care? Professor Walsh mentioned that palliative care specialists should have superior decision-making skills.

Ms Burke stated that we had no legislation on advanced care directives. What does she have in mind? Would a patient and-or family seeing a palliative care specialist always know that the patient was dying? Would people have that capacity?

Professor Walsh mentioned that he had gained a great deal of experience in the UK. He is probably familiar with the Liverpool Care Pathway for the Dying Patient, LCP, which has been controversial. Will he critique it for the committee? At many hospitals, more than 50% of patients who died had been placed on the pathway. In one hospital's case, the proportion of foreseeable deaths on the pathway was almost nine out of ten. It was as if the National Health Service had given financial inducements to put patients on the pathway to dying. I am interested in the decision-making process.

Marie Louise O'Donnell (Independent)
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I thank our guests for their presentations on this tough subject. I will address three short questions to Dr. Gregan. In what ways could general practitioners, GPs, be supported to enhance their delivery of palliative care? How could the Irish College of General Practitioners play a role? His submission mentioned the issue of medical cards for people with terminal illnesses and limited prognoses. Will he expand on the importance of that provision? What problems has he encountered when such people need to renew their cards?

I thank Ms Burke for her presentation. I will cite the Minister for Health. I am not a member of this committee, but I am interested in this subject and have been following it as a broadcaster, a writer and a Senator. On 23 May, the Minister, Deputy Reilly, told the committee:

My final point, which deserves to be made repeatedly, relates to the tendency in nursing homes in the past to refer patients who are dying to hospital emergency departments ... The tendency to transfer gravely ill residents to emergency departments seems to arise out of concerns and perhaps a lack of confidence in dealing with the terminally ill patient. It is a dreadful tragedy and affliction for such people that the last hours of their life are spent in unfamiliar surroundings. It is utterly inappropriate. To address that issue, the Health Service Executive has begun, through its clinical programmes, sending specialist gerontologists out to nursing homes to support them in dealing with these situations, which are emotionally difficult for all concerned. It is not in the interest of patients who are coming to the end of their days ... They should be allowed to see out their time [that is an interesting term] in the facilities that have become their homes while receiving all the proper care and attention they require.

I thank Ms Tan of the Institute of Community Health Nursing, ICHN. She stated that due cognisance should be given to the role of the public health nursing service across the disease trajectory, including end of life, alongside the specialist palliative care service. Will she expand on this point and what further supports would be required from her colleagues who provide specialist palliative care to have the central role of the public health nurse in end of life care recognised?

Dan Neville (Limerick, Fine Gael)
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I wish to ask Professor Walsh about his experience abroad and how society is changing as regards the sensitive matters of euthanasia and assisted suicide. Within five or ten years, there will be a serious debate on this topic. Given his experience abroad, how does he believe that conversation will develop in society? We can hide from it for as long as we want, but it must be faced, as it has been in other countries. We know how the majority of society feels about the subject, but that will change within five to ten years. Some of the reaction to individual cases has shifted radically in a short time. Euthanasia and assisted suicide are legal in some states in the US and Europe.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will begin with Dr. Gregan and work our way down.

Dr. Paul Gregan:

I will address a number of points. Deputy Kelleher's comments on out-of-hours services were well made. We have a large problem in how those services manage palliative care patients. They do their best under stringent, difficult circumstances. If one is in a house in the Kerry mountains at 2 a.m. trying to make a decision about a critically ill person who is not well enough to go anywhere, it is a difficult situation to manage.

The programme with which we are involved has examined this matter. We have considered two ways to help. First, services can be provided with information prior to attending a patient by means of an electronic palliative care summary e-mailed to them via a secure health link. Second, services can have access to a specialist palliative care physician via telephone, effectively providing a second pair of eyes to assist in making a decision. Of further help would be education programmes for GPs who work in out-of-hours services. Often, they are young and foreign. The programmes would update them on local skills and requirements.

Deputy McLellan asked about the Prague Charter. It has not been assumed into World Health Organization, WHO, or UN charters. It considers policy, the provision of essential medicines, training and the integration of the palliative care system. Internationally, there has been a major push to have the charter adopted by the WHO. However, it is still new and has not gained traction yet.

The Deputy also asked about a stand-alone entity to consider the provision of palliative care in the community. This would be a good development. It would need to involve the interested parties, for example, the Irish Association of Palliative Care, IAPC, the Irish Hospital Consultants Association, IHCA, and the Irish Hospice Foundation, IHF. Developing a group to act in an advisory capacity would be a good idea.

Senator Healy Eames asked about assisted dying. That is the polar opposite of what we in palliative medicine do. Palliative medicine is about assisted living and managing one's ability to remain alive.

The Senator also asked about informing the families of people undergoing palliative care. Routinely, that information comes from the individual patient. Most will be in a position to tell a palliative care physician whether they want their families to be informed. In the absence of a person being able to give consent, a GP or consultant must make the decision in loco parentis. However, it is good practice to keep a family up to speed with what is happening inasmuch as possible unless there is a specific direction from the patient prior to becoming ill not to do so.

Senator O'Donnell asked about support for general practitioners. The electronic palliative care summary is a good way of supporting general practice. A practise-based register of patients who are undergoing palliative care would be very helpful. We are trying to develop this idea. Under the gold standards framework in the UK, consideration is being given to comprehensive co-ordination of people deteriorating and dying, which helps to prevent people being unnecessarily admitted to hospital.

Education would also be helpful. A question was asked earlier in regard to the Irish College of General Practitioners. It provides education in this area. I was a palliative care tutor with the Irish college of General Practitioners for four years. The ICGP runs a course for GPs interested in this area. It would be useful to get them involved in the out-of-hours area. The issue of medical cards was also raised. Medical cards have been a hugely positive thing for patients on the ground. As palliative care physicians we often have to prognosticate and work out how long a person has to live. If we feel a person will die within six months then he or she will qualify for the service. However, we are not going to get it right every time. Based on unpublished research we believe that approximately 20% of the time the six month period will be over-run. We are currently running over by one or two months. To ask a person within a month or two of dying to reapply for a medical card on a means test rather than discretionary basis is inhuman. This has to change.

Jerry Buttimer (Cork South Central, Fine Gael)
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Has Dr. Gregan made his views known to the HSE?

Dr. Paul Gregan:

Yes.

Jerry Buttimer (Cork South Central, Fine Gael)
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Has he received a response from the HSE on the matter?

Dr. Paul Gregan:

No, not yet. This is a recent issue. We are developing a body of evidence on the issue. The emerging evidence suggests that is the case.

Jerry Buttimer (Cork South Central, Fine Gael)
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The committee addressed the issue at its quarterly meeting with the HSE.

Colm Burke (Fine Gael)
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At our last meeting with Mr. Tony O'Brien we raised the possibility of providing a 12 month rather than six month emergency card.

Marie Louise O'Donnell (Independent)
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Who makes that decision?

Colm Burke (Fine Gael)
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Mr. O'Brien said he would consider it.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will come back to that issue at our meeting on Friday.

Marie Louise O'Donnell (Independent)
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It is a huge issue.

Dr. Paul Gregan:

From the patient perspective, it would be enormously helpful. It is something which the HSE could be proud of providing for patients.

Ms Mary Burke:

On Deputy Kelleher's question on access to out-of-hours GP services in nursing homes, unfortunately, the main issue for us is that while a GP will know a patient's history and so on, a Caredoc will not. As stated by Dr. Gregan it is difficult to make a decision in the middle of the night about somebody who is dying. Unfortunately, in some rural parts of Ireland it can take up to 40 minutes or one hour for a Caredoc to get to a facility, during which time the patient is in pain. There is a need to ensure improved access to out-of-hours services and that people at end-of-life stage are treated by GPs with relevant experience in that area. It might be useful to, as suggested by Dr. Gregan, develop a database in this regard.

On the Deputy's question of whether there are sufficient trained prescribers, the answer is there are. There are more than 700 nurse prescribers in Ireland, of which, unfortunately, only 440 are currently practising owing to difficulties in obtaining support in their hospitals. There are only three nurse prescribers in private nursing homes in Ireland, of which I am one. We can prescribe medication but we cannot have it reimbursed under the GMS system. That is the difficulty that arises in the context of the prescription pad. Nursing Homes Ireland, NHI, has lobbied on our behalf for access to such pads.

Billy Kelleher (Cork North Central, Fianna Fail)
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Is that a regulatory or policy decision?

Ms Mary Burke:

It is a policy decision.

Billy Kelleher (Cork North Central, Fianna Fail)
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There is no need for legislation or statutory instrument?

Ms Mary Burke:

No. There is already in place legislation on nurse prescribing, which was introduced by former Minister for Health, Mary Harney. It has had a positive impact on patient care in that there is timely access to medication. I am permitted to prescribe pain relief for people in nursing homes who are dying, which is very positive. I am lucky in that a GP in the nursing home in which I work has given me permission to prescribe using his prescription pad. Other nurse prescribers in Ireland do not have that luxury. It is an issue that needs to be addressed.

The Deputy also asked about consultant-led palliative care. During my time in nursing homes I have never witnessed a visit by a palliative care consultant. They do not visit. Such visits would be welcomed. It would assist in terms of greater communication with families. Unfortunately, some GPs visit Monday to Friday and do not get to meet with or have discussions with families regarding end of life. Communication and decision-making is the key to good end-of-life care. Palliative care consultants are the speciality in this regard.

Deputy McLellan asked me to outline the shortfalls in geriatricians. Unfortunately, I do not have the statistics in that regard. I do not know them. Connolly Hospital in Dublin operates an excellent system whereby consulting geriatricians visit all the nursing homes attached to it, which prevents re-admission to the acute hospital. The consultants hold regular team meetings and family meetings. They also liaise with the palliative care teams to ensure multidisciplinary team decisions around care. This service is not available in most other parts of the country. It is a service that should be rolled out. It would definitely prevent re-admission to acute hospitals.

Senator Colm Burke also asked about nurse prescribers. I have already answered that question. On individual nursing homes and our arrangements with GPs, each resident is entitled to be treated by the GP he or she was attending prior to admission to the nursing home. Some nursing homes have GPs attached, to whom they pay an annual fee. In other cases, the GPs own the nursing homes so they get a very good service. The nursing home in which I work is serviced by 14 different GPs. It is difficult to have an equitable service of GPs for residents. Some GPs are excellent and attend every three weeks. Others attend only every three months. The Health Information and Quality Authority, HIQA, recommends that all residents are visited at least every three months. There needs to be more equity in the GP service. The Irish College of General Practitioners is working on this. The chairperson of the committee looking into this is Dr. Tony Lee. He is working on the development of a document which lists the various things which a GP must do during a visit. This should help.

On additional beds and whether the patients concerned could be cared for at home, unfortunately the dependency level of residents now being admitted to nursing homes is much greater than pre-fair deal. Under the fair deal scheme patients must be assessed as requiring long-term care. Therefore, the consultant geriatrician will not sign them off for long-term care if they can be cared for at home. There is definitely a deficit in the beds available. Nursing homes all over the country have waiting lists. As I said earlier, some of the people on these waiting lists are in receipt of palliative care and, often, some die before a bed becomes available. A big issue that has arisen in the context of the establishment of more nursing home beds is what the National Treatment Purchase Fund, NTPF, pays under the fair deal scheme to nursing homes. There is no encouragement for new providers to set up nursing homes because they will not get the rate of pay that is required for the provision of care, in particular at end of life. HIQA standards recommend the provision of additional care at end of life. Where a resident in a nursing home is dying this may require an additional nurse at night to care for that resident, which requires additional funding. This is not catered for in the fair deal amount provided. The shortfall between what the NTPF pays for the cost of care and the standard and quality of care which nursing homes want to provide needs to be looked at. Nursing Home Ireland has a number of times recommended the development of a forum with the key stakeholders, including HIQA, the HSE, Nursing Home Ireland, to work on the key issues. We want to provide an excellent standard of care but are unfortunately prevented from doing so because of financial constraints.

I thank Senator Healy Eames for her questions. On the issue of there being no advanced care directive legislation in Ireland, currently we have the "Let me Decide" and "Thinking Ahead" forms, which allow people when unwell to make decisions in regard to what care they want to receive. Unfortunately, these are not covered by legislation. As such, how legally binding such documents would be at end of life is uncertain. There is a need for legislation in this regard. Another issue that arises in the context of advanced care directives is that what a person wants now in terms of end of life care could differ from what he or she would require in 20 years. This means these documents will need to be updated and reviewed.

A person may enter a nursing home and in six months time his or her health may have deteriorated due to dementia, for example. Therefore, a decision taken six months ago can be very different from what is needed now. Also, advanced care directives requires a huge amount of education and support for staff, GPs and nurses.

Senator O'Donnell mentioned that the Minister for Health, Deputy Reilly, had spoken about dying patients going to accident and emergency units. That does happen, but the situation has improved immensely. We have got much better at talking about end-of-life care and how decisions are made. We can give a diagnosis that a person is dying. There are more communications with families around the issue of dying. We are now confident enough to say to a person's family that if their loved one goes into an acute hospital he or she may pass away on a trolley in an accident and emergency unit. We ask the families if they would prefer to have their loved one die in a nursing home with staff who know them, thus allowing them to die with dignity and respect. Communication with families and residents on end-of-life wishes has improved and we are not transferring as many people to accident and emergency units. I have seen a great reduction in the number of patients to whom this happens.

We must be grateful to HIQA for its standards and new end-of-life thematic inspections. It has recommended that we have end-of-life discussions with every resident. We can compile a document on what a person wants so that things are much clearer. Thankfully, not as many people are ending up in hospital. There may be a difficult family who want everything done for their 99 year old mother and feel that she should be transferred to hospital. Those wishes must be respected.

Peter Fitzpatrick (Louth, Fine Gael)
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Ms Burke's comments have confused me a little. Did Ms Burke say that a person who needs a nurse to look after him or her at night, and do everything else, is not covered under the fair deal scheme?

Ms Mary Burke:

Our nursing homes have a set number of nurses. If three or four people need end-of-life care we may decide to provide an extra nurse. The number of nurses provided depends on the dependency level. At present, the amount paid to the nursing home under the fair deal scheme does not cover any extras.

Peter Fitzpatrick (Louth, Fine Gael)
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Is Ms Burke saying that the nursing home looks after the patient out of its own pocket?

Ms Mary Burke:

Yes.

Peter Fitzpatrick (Louth, Fine Gael)
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If a resident's condition gets extremely bad, will a GP transfer him or her to hospital?

Ms Mary Burke:

Yes; the person would transfer to hospital if things were bad.

Marie Louise O'Donnell (Independent)
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What support is provided to other residents and staff when a resident dies in the nursing home? That is a great communication issue as well.

Ms Mary Burke:

My organisation participates in the hospice-friendly hospitals programme, which includes an end-of-life audit. A day or two after a resident dies in the nursing home we arrange a debriefing session, where all the staff sit down-----

Marie Louise O'Donnell (Independent)
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I hope it is not called a debriefing session.

Ms Mary Burke:

No; it is an end-of-life audit.

Marie Louise O'Donnell (Independent)
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It sounds like "The Hunt for Red October".

Jerry Buttimer (Cork South Central, Fine Gael)
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Thank you. Senator O'Donnell can try it.

Marie Louise O'Donnell (Independent)
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Yes; I can take it away and get back to the organisation.

Ms Mary Burke:

No. We discuss symptom management, ask whether everyone was happy about the management of the case and ask whether they want to discuss their feelings and emotions. Some people may have resided in a nursing home for seven or eight years, so staff will have known them very well. The staff may know the residents as well as their own grandparents and may have grown quite attached to them . We all sit down and have tea and cake. Then we discuss the care provided to the person to see if we could have improved their care or done anything better. The meeting gives people an opportunity to vent their feelings and talk. For residents, we have arranged a weekly visit by ministers of the Eucharist with holy communion so that they can pray for the person who has passed away. I also talk to the residents, because some of them may have been very good friends with the deceased and sat beside him or her in the day room on a daily basis. Every November we have an annual mass of remembrance for people who pass away during the year. It is an opportunity for the families to return to the nursing home and meet us again.

Ms Anne Tan:

A question was asked about the role played by public health nurse in decision-making, particularly decisions on the care afforded through care packages. A public health nurse is well positioned to assess a patient and decide what care is required and who is best placed to provide same. In most cases, he or she does not make the decision on how much care and time will be provided. That decision is made by the HSE administrator.

From a public health nurse point of view, there is a need for more funding in the area and for public health nurses to have more say in where the funding goes and its prioritisation, particularly for palliative care patients.

Billy Kelleher (Cork North Central, Fianna Fail)
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Often it is the public health nurse who must convey an administrative decision to a patient even though it may not be what he or she wishes for the patient.

Ms Anne Tan:

Yes, and that is the unfair part. That was the point made by the Deputy.

Deputy Sandra McLellan asked what type of training should be provided to public health nurses working in the community. Two types of nurse work in the community: the community registered general nurse and the public health nurse. One could say there are three types if one includes the specialist palliative care nurse.

There are many different education programmes available. I feel that a multidisciplinary approach to education is greatly needed. It is something we are considering as time moves on.

Earlier we talked about decision-making in palliative care. A multidisciplinary approach is required, but it can only be done through people knowing and understanding how to do the work. They need to know how to make such decisions and to communicate in a multidisciplinary fashion.

There is a need for carers at all levels to have a better understanding of palliative care and how to communicate within the sector. They need to know how to communicate with patients and convey their needs and wishes to others on the palliative team. There is a higher award in palliative care but there are many different higher education courses available, both formal and informal. Specialist services also play a role in providing education for the general services, either by the community nurse or on a one-to-one basis in a practical situation during a public heath nurse visit. Centres of nursing education also provide educational training. The important thing is that we operate in a multidisciplinary fashion.

Senator O'Donnell mentioned that due cognisance must be taken of the role played by the public health nurse. She also asked what help and support is provided by my colleagues who work in specialist palliative care. For many years the specialist palliative care services developed in an ad hoc manner. The roles of most of the community specialist palliative care nurses developed, in years gone by, through the hospice home care services. Now, more nurses with a background in either oncology nursing or hospice units are joining the service. They have a different approach and a different take on how to provide support to people in the community. The specialist palliative care nurses should act as our role model and bring their knowledge and expertise to us. They can help and guide us. That would give us the confidence to be competent in what we do. That can be achieved by providing support and education on a one-to-one basis in a practical situation.

Mr. Gerry Martin:

I thank Deputy McLellan for her kind comments, which will be sincerely appreciated by all of my colleagues. She also mentioned end-of-life-proof homes, but I am not 100% familiar with the concept.

Today I shall reflect the views of people with dementia and their carers. More than a year ago the Alzheimer Society of Ireland set up a working group of people with dementia who meet on a regular basis to influence our services and policies. It is the clear desire of people with dementia and their carers to be supported and allowed to remain at home for as long as possible, up to and including the end of life. That is their expressed wish. In the context of dementia, the home setting is always the best setting. I do not underestimate the intervention and support that carers need to achieve that goal. It must be right along the trajectory, from diagnosis onwards, rather than in the form of intervention at a crisis moment. It is a clear desire of people with dementia to remain at home until the end of their lives, if possible.

Deputy Kelleher touched on resources. He also touched on the importance of better planning of resources, which can produce better results. A lot of resources are being spent in the area, but I shall concentrate on dementia. In the society's budget submission, for example, we estimated that 15,000 people with dementia live in residential settings at present. We could reduce that number with better early interventions.

If we could reduce it by 10%, we could save €73 million per annum. A significant amount of resources has been dedicated to this area. As the Deputy mentioned, we could use the money more wisely with better planning and early interventions. It will be less expensive if we focus on early intervention.

Jerry Buttimer (Cork South Central, Fine Gael)
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Is there agreement to engage on that issue?

Mr. Gerry Martin:

My point is that the only way we can achieve systemic change, in terms of moving resources from one end of the system to the other, is by pursuing a national dementia strategy with a clear implementation plan. Real leadership and accountability are needed if that is to be achieved. While there is broad agreement in that regard, we face a challenge if we are to succeed.

Jerry Buttimer (Cork South Central, Fine Gael)
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The challenge is not necessarily one of resources.

Mr. Gerry Martin:

I would not underestimate the requirement for further resources. Significant resources are being spent in this area. We argue that they are being spent at the expensive end - the crisis end - whereas a better result could be achieved if there were better planning and early intervention.

Professor Declan Walsh:

I would like to respond to what Deputy Billy Kelleher said on the subject of pre-hospital care. In the case of a person who has been diagnosed with a chronic incurable illness, it comes back to the concept of having a defined plan of care agreed with the patient and the family. The plan of care should reflect the patient's wishes. The patient's care should be co-ordinated between the acute system and the community or post-acute system. In many cases, when somebody goes into hospital for a few days before going out into the community, these are random events, with no continuity of care and a lack of good communication between locations. The current evidence from the United States suggests earlier involvement of palliative care services reduces the average length of hospital stay and the likelihood of readmission to hospital. It is at the interface with community nursing homes that we can make sure the patient stays where he or she is best cared for. If he or she really needs to be in hospital, well and good. It is important that he or she should not have to go there because of some unanticipated crisis.

There is a continuing debate about the resources issue. If one has €100 to spend in a hospital, should one spend it on palliative care or intensive care beds, for example? We are not going to resolve that issue today. There is good evidence to support the general understanding that better resource allocation in hospitals will feed into the achievement of a better plan of care, thereby leading to earlier discharge from hospital and freeing up hospital beds for those who really need to be in hospital. This, in turn, will reduce the cost of care which is extremely expensive, as members will be aware.

The move towards seeing palliative care as a universal right has been addressed. The European Association for Palliative Care has issued its Prague declaration. All the signs are that this will move ahead through the World Health Organization, which we would all welcome.

I was also asked about the relationship with assisted dying. This is a very complicated issue and I suppose the short answer is to say the focus in palliative care and medicine is on the relief of symptoms. There is a minority of people who have intractable symptoms. In some of these cases, the people in question need to be sedated. This means that they are given drugs, or doses of medication, that render them unconscious. The objective is not to kill the person but to give him or her whatever medication he or she needs to relieve his or her distress. There is an important distinction. While it could be the case that these doses of medication might cause a person to die, the focus is on the therapy aimed at relieving whatever distress he or she is suffering. There is no question of somebody who is not suffering to any great degree being approached by a person with a dose of medication saying, "Now we are going to end your life." That is the distinction.

Most people who have worked in this field feel very uncomfortable about the manner in which the assisted dying debate is presented. The short way of putting it is that hard cases can make bad law. I have been working in the field for 30 years and the biggest issue I have had to deal with in that time is not that people want to die. People want to continue to live; that has been the overwhelming desire of nearly everybody I have seen in my professional career. One sometimes tries to persuade them to receive less medical care and fewer medical services. People will hold on to life with a grim determination. These issues need to be presented in a balanced way.

I am in favour of the Liverpool care pathway. I like pathways. I think it comes back to the issue of continuity of care. There should be a plan of care for each person. The Liverpool care pathway has run into problems because there has been a somewhat over-zealous application of some aspects of it. In addition, there have been some issues with the training of the staff expected to implement it. The devil is in the detail, as it is in many aspects of life. One might know what something looks like, but when one goes to put it down on paper, it becomes very black and white and may be open to misinterpretation. There is certainly an issue in that regard.

Advance directives are now mandatory in the United States. Every patient who comes into a hospital must have an advance directive. As a matter of routine, every patient must be asked about his or her wishes in that regard.

Fidelma Healy Eames (Fine Gael)
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I would like clarification in one respect.

Jerry Buttimer (Cork South Central, Fine Gael)
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Very briefly.

Fidelma Healy Eames (Fine Gael)
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One of the criticisms of the Liverpool care pathway-----

Jerry Buttimer (Cork South Central, Fine Gael)
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A vote has been called in the Seanad.

Fidelma Healy Eames (Fine Gael)
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Yes. The Royal College of Physicians found that up to one half of families were not informed of clinicians' decisions to place a relative on the pathway. What is Professor Walsh's view? It seems extraordinary.

Professor Declan Walsh:

I would have thought that in any situation of this kind - I have not been involved with the care pathway initiative because it is not in widespread use in the United States - it would be very unusual for the family not to be informed in advance of any pathway-like approach being adopted. Certainly, my experience has been that when it is decided a person is, in fact, dying and that a certain series of interventions or measures is needed to ensure his or her comfort as he or she dies, the family is consulted in advance.

Fidelma Healy Eames (Fine Gael)
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Therefore, Professor Walsh disagrees.

Professor Declan Walsh:

I think it would be very unusual for that to occur, other than in an emergency. As I have said, the problem with written guidelines and care pathways is that they can sometimes be employed too rigidly. It would be very unusual in my experience.

Marie Louise O'Donnell (Independent)
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Before I go to vote in the Seanad, I would like to ask Ms Tan about the additional supports she needs from her colleagues to recognise her role in end-of-life care. What does she need from others involved in specialist palliative care to recognise her public health role?

Jerry Buttimer (Cork South Central, Fine Gael)
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I will allow Deputy Peter Fitzpatrick to ask a brief supplementary question.

Peter Fitzpatrick (Louth, Fine Gael)
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I would like to ask Ms Tan-----

Jerry Buttimer (Cork South Central, Fine Gael)
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I ask the Deputy not to go back to Ms Tan. Members have already had their chance with Ms Tan.

Peter Fitzpatrick (Louth, Fine Gael)
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The Chair did not let me in.

Jerry Buttimer (Cork South Central, Fine Gael)
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Very briefly.

Peter Fitzpatrick (Louth, Fine Gael)
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When a public health nurse visits a patient and recommends that he or she needs one hour of care a day seven days a week and that patient receives just half an hour of care five days a week, how far can the public health nurse go in trying to look after that patient? I agree with Mr. Martin that early intervention is important. In recent years I have been reading in the newspapers about various fantastic medications. Can Mr. Martin tell me how good or advanced is the latest medication? What does he recommend?

Jerry Buttimer (Cork South Central, Fine Gael)
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The delegates can work their way through the various questions, starting with Professor Walsh.

Professor Declan Walsh:

Deputy Dan Neville asked about assisted suicide. It is inevitable that the public debate on this subject will increase. The rapid ageing of the population in many countries is forcing the debate. As I said, most of the people who work in this field have concerns about the way the debate is presented. They are concerned about how it is playing out. When vulnerable elderly people are going into hospital, they might believe someone is going to kill them. There are serious concerns in that regard.

It is important to emphasise that everyone who is very ill should know for sure that they are going to have access, either in the community or the hospital setting, to high quality palliative care. If they have such access then with the provision and continuity of care I believe many of the difficult challenges we face could be significantly ameliorated. Anyway, the debate will continue; there is no question about it.

Mr. Gerry Martin:

I had better not answer that or comment because I am not a clinician. However, it is certainly true that some of the interventions can be pharmacological. Some medicines can help and have been shown to help and, if not to cure, then at least to slow down the prognosis of the disease. Equally, some interventions on a more social basis have also been shown to have a major impact on delaying the progression of disease, for example, keeping people engaged and exercised, etc., not least supporting their own carers. There can be a mix and certainly there is no up-to-date advance in terms of medication but I would not rule out the importance of people having it included in terms of a timely diagnosis.

Ms Mary Burke:

Part of the question related to how far the public health nurse can go to get further time from a carer for a patient. It is very difficult in many cases. We have to wait until someone else dies and their hours become available. However, we continue to lobby our line manager until those hours become available to us and then we transfer them over to our patient. That is the only way we can do it. If the hours are not there, they are not there.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank all our witnesses and guests sincerely for coming in today. Their contributions will be a valuable and critical source in the compilation of our report as well as the substantive papers we have received. I realise it is difficult to encapsulate everything they might want to say into five minutes of a presentation but I thank them none the less.

I remind people that in addition to our public hearings we are also seeking submissions from the public, interested parties, organisations and stakeholders. The closing date for receipt of written submissions is Tuesday, 19 November. Further details are available on the Oireachtas website and the health committee webpage. If anyone in the Public Gallery is interested in making written submissions, the details are available through the Oireachtas website and the closing date is 19 November. At the next meeting we will continue this series of hearings on this important and sensitive topic.