Jerry Buttimer (Cork South Central, Fine Gael)
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The main matter on our agenda is a discussion on end of life care in Ireland. I thank everybody who has been involved thus far in our hearings and welcome this morning's witnesses to our sixth and final session of meetings on end of life care in Ireland. We have had a comprehensive, thorough, sensitive and wonderful set of hearings and I am sure this morning will be no different. I thank the witnesses for making the time to attend this meeting and for their written submissions. Each speaker will have five minutes to make an opening contribution. I welcome Ms Kate Bree, Professor Patrick Plunkett, Dr. Geoff King, Ms Margaret Naughton, Dr. Deirdre Madden, Mr. Bryan Nolan, Professor Cillian Twomey and Ms Joan Kelly.

Before commencing I remind people that witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by it to cease giving evidence on a particular matter and continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected to the matters under discussion should be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against a person or an entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I now invite Ms Bree to make her opening statement.

Ms Kate Bree:

I am honoured on behalf of the network of Hospice Friendly Hospitals to address the committee this morning. I propose to explain what we are doing, what we can do better and what needs to happen for our dying patients and their families in our hospitals. I am one of the senior nurse managers in charge of the hospital and work weekends in this capacity. My experience to date is that patients do not always die between 9 a.m. and 5 p.m., Monday to Friday, when all services are in place. Often one is faced with very profound experiences involving patients and families outside these times. I was involved with a family whose adult child had died tragically. On receiving the news, I contacted the hospital Chaplain and we discussed where would be the best place to take the family. Their adult child had not died in hospital so we would not be involving a ward area but we needed an appropriate space. In difficult sensitive situations like this, one acts quickly and makes decisions. Time is of the essence. We were very conscious of where we would take the family because additional news of a distressing nature needed to broken. We agreed a space - a small office area - and met the family when they arrived at the main entrance. We offered our condolences, made tea and were present with the family while tragic news was broken. It was difficult in this small room for them to move around to comfort each other. Later, when they were able, we brought them to the Mortuary to see and spend time with their child. Our viewing area in the Mortuary for families is far from ideal and is outside the main building. The Chaplain, hospital porter and I tried to make it as tolerable and presentable as possible. We brought back the family to the room and stayed until they were ready to face their difficult journey home.

At times like this one becomes totally absorbed and anxious for the family because one really wants to do the right thing for them in their distress. This experience affected us and had a profound effect on me. I wanted to share this with the committee this morning as it captures some of the challenges we face on the ground in providing good end-of-life care in our hospitals. Good end-of-life care is everyone's business, the nurse, the chaplain, the porter. We get only one chance to get it right. What I have described indicates the importance of staff having the necessary skills in communication and awareness around end-of-life care to ensure all patients and families are treated with dignity, respect and sensitivity. We must have appropriate spaces within in our hospitals that afford privacy when breaking bad news to the patient and their family. We need to ensure our viewing areas in our mortuaries are improved.

As a result of the programme, some of this work has started and is progressing. The programme invites hospitals to embrace their role in supporting all patients at end-of-life, regardless of diagnosis, whether their death is expected or sudden. It acknowledges that end-of-life care is a core activity in our hospitals. Almost half of us in this room today will die in a busy acute hospital and almost half will die in a busy ward area as opposed to in the privacy of a single room. Almost half of us will not be involved in discussions regarding our care. Staff find it easier to talk to relatives than to the patient. We know this is based on the results of the national audit on end-of-life care which suggests there is substantial variation in the quality of care offered to patients and relatives at the end-of-life. The audit concluded that there are 17 ways to improve dying in hospitals, one of which is to ensure the patient is cared for in a single room. We are short of such spaces and have competing priorities such as income generation and infection issues.

How would one know if a hospital is a hospice friendly hospital? At its simplest, it is a hospital that takes end-of-life care seriously and is implementing the quality standards for end-of-life care in hospitals, which set out a shared vision for what hospitals should be aiming for and what patients and families should expect. At its heart, it is the culture change programme which introduces numerous practical resources to enhance the culture at end-of-life. I want to bring the end-of-life care symbol to the attention of the committee this morning. This has been developed to respectfully identify items connected with end-of-life. It is inspired by ancient Irish history and is not associated with any one religion or denomination. When one sees this displayed in the hospital ward it signifies that a person is very close to death or has died. It signals to all staff, other patients and families that an intensely personal and profound experience is happening to a person and their family in this ward at this time, of which they should be mindful.

I thank the committee for reading my submission and ask that all the recommendations therein be given consideration. I would like at this point to highlight three of the recommendations. We have excellent committed staff in our hospitals and we need to support and invest in them to ensure they care for our loved ones with competence and compassion. We need to ensure we have adequate numbers of staff on the ground that can provide compassionate care and be present for patients and their families. We need a national end-of-life and bereavement strategy to cover all aspects of dying, death and bereavement in Ireland. We need and can do so much better for our dying patients and their families.

When pressed, most of us in this room this morning will say we wish to die at home. My wish for members and I is that this will happen. If not, I hope that by the time they die, every hospital in Ireland will be a hospice friendly hospital and offer them patient-centred, compassionate care, because they matter. The following is a link to a five minute DVD entitled, "A Wish":irishhospicelibrary.wordpress.com/2012/07/18/a-wish-new-animated-video-from-the-hospice-friendlv-hospitals-programme/. It captures and explores the important role all staff play in providing end-of-life care for those of us who will die in hospital. I ask that the committee watch the DVD. A good death in hospital is possible. Our challenge is to make it happen.

Jerry Buttimer (Cork South Central, Fine Gael)
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Thank you. I now invite Professor Patrick Plunkett from the Irish Association for Emergency Medicine, to make his opening statement.

Professor Patrick Plunkett:

Death is the only certainty in life. Whether one includes taxes, as did Benjamin Franklin, is a moot point as there may be ways to avoid taxes but none to avoid death.

End-of-life care in the emergency department is a recently coined phrase but the concept predates all of those in this room. Most people who contemplate the end of their own lives fear certain aspects of it, in particular the risk of pain or indignity. Whereas it was common up to 50 years ago for people in this country to die at home, it is increasingly uncommon. Some 48% of deaths occur in acute hospitals, 20% in long-term care facilities, 25% at home and only 4% in hospice care. When expected, arrangements may be in place to deal with the concerns of the dying person and their relatives. When unexpected, or precipitate, such plans may be thwarted or simply not yet in place. Interestingly, surveys have shown that most medical doctors would opt to die at home, if at all feasible.

An audit study from four years ago showed that 84% of patients dying in hospital had accessed the hospital via the emergency department, with 24% of the deaths being unexpected. End-of-life care in the emergency department is opportunistic in that it depends on many factors coming together at the one time. It relies on the determination of the staff to ensure the best possible experience for their patients and the patient’s relatives or friends. It requires determination to deliver quality care in what is perceived by many outsiders as a chaotic setting. Every dying person has physical, psychological, social and spiritual needs. It is relatively uncommon for one person to be able to support each and every one of these needs. Instead, a team effort is essential. This team must be prepared and, like an elite squad, practised at its task.

The barriers to a high quality death in the emergency department include the physical setting, often overcrowded, noisy, and with high intensity lighting 24 hours a day. It is psychologically extremely difficult to be plucked from one’s bed at home, gasping for breath, and be brought by ambulance, careening through the streets with sirens blaring, to a noisy environment, where the bustle of life-saving measures applied to one person may interfere with the peace and quiet required by a dying woman contemplating her last few hours or minutes on this earth. There is an understandable reluctance to spend a lot of time with a person known to be dying, whose life cannot be prolonged by any means within the power of nursing and medical staff. While staff are concerned for these people, the pressure of other patients’ needs can be very distracting, running the risk of a lonely death in a crowded room.

What of the tensions within a family whose loved one has been injured in a traffic collision or in a murderous assault and now lies sedated, ventilated and paralysed, unable to communicate his or her needs, with no prospect of survival? All deaths in the emergency department or within 24 hours of admission must be reported to the Coroner. Post mortem autopsies will be carried out on a high proportion of these, otherwise the legal requirements for death certification will not be fulfilled.

This places further tension on the relations between families and staff, which can, on occasion, lead to difficulty.

What can be done to optimise end-of-life care in emergency departments? The first thing is to believe it can be improved, to examine each element carefully and to deal with every deficiency in a constructive fashion. The environment of the emergency department is designed for large-volume patient care, in a physically constrained area. To reduce the inevitable noise, bustle and excess light, requires a separate area that can be used to support patients and their families during the process of dying and after death. This needs to be close enough to the main clinical area to allow ready access with staff able to move to and fro without difficulty. It should be decorated in calm and soothing colours and fabrics, while keeping in mind the infection control elements required in a clinical environment. Access to refreshments and to external communications for families is vital. Nowadays, this means ensuring adequate mobile phone signal strength, which can be a difficulty in areas with radiation protection built in to the walls.

Staff, whether medical, nursing, clinical or clerical-support personnel, must be all trained in the ways they can support dying people and their families. At this moment a seminar it taking place in my hospital to teach people how to break this barrier of dealing with dying patients. Rather than end-of-life care, it is called "journeys". It equally means the staff must face their own inevitable death, at least in broad philosophical terms.

There must be a willingness to engage with the physical, emotional and spiritual needs of patients, whatever the religious beliefs of the staff. This is increasingly important in an Ireland which 50 years ago had mainly Roman Catholics and Protestant denominations with a smattering of Jewish people, but which now has many other different religious groups, ranging thorough Animist, Buddhist, Coptic, Christian Orthodox, Daoist, Episcopalian, Hindu, Sikh, Muslim and others.

Unless the inevitability of death is recognised, there may be a reluctance to use adequate doses of powerful painkillers despite clear evidence of need. However, access to adequate pain relief is a must for those who have pain. Methods to enhance this include the use of technology, such as patient-controlled analgesic pumps or transcutaneous pain relief and the use of personnel, such as pain-control or palliative-care specialists. The latter are rarely available on a 24-hour basis, but can provide tuition for those who are, such as medical and nursing staff in emergency departments, who can then use the technology as required.

These issues might be better dealt with if there was a more open and structured approach to end-of-life-care planning at personal and family level. If a person is discharged from hospital to home with a known terminal illness, there seems to be a reluctance to engage with the person and his or her family to understand the next step in the process. This leads to panic when the patient eventually and inevitably deteriorates at home. The family or friends then lose control and dial the emergency number for the ambulance service. Once that behemoth is unleashed, the result is predictable - the patient will be brought to the nearest emergency department, usually in extremis. He or she will then die in the emergency department or during the journey.

In cases where the patient has already suffered a cardiac arrest, there is a natural reluctance on the part of pre-hospital emergency care providers - ambulance personnel - to pronounce death in the home, which leads to ongoing resuscitative efforts and pronouncement of death in the emergency department. That then leaves the emergency department team to deal with the process of informing relatives and dealing with their grief, and with the logistic difficulties of identification and referral to the coroner. Although the Pre-Hospital Emergency Care Council has developed a clinical practice guideline to reduce this problem, it is likely to remain an issue into the future. I understand that my colleague, Dr. King, will deal with that.

An increasing concern for emergency medicine practitioners is the apparent reluctance to allow frail elderly men or women die peacefully in nursing homes. Hypostatic pneumonia, which leads to delirium and death over a period of a few days used to be termed "the old man's friend". Once secretions were dealt with, the patient turned regularly to reduce discomfort and pain prevented by the use of "the Brompton cocktail", the patient would slip away quietly, with their relatives and friends by the bedside. This no longer occurs.

A similar issue also affects demented elderly patients who fall in nursing homes or who develop urinary tract infections and sepsis. The perceived underlying cause is the risk of an adverse comment from the coroner or, worse still, from a HIQA investigation into increasing numbers of deaths in that nursing home. The fallout from Lees Cross has had both positive and negative effects in this regard in my view.

Very few emergency departments in this country have adequate physical facilities for death and bereavement, although these facilities are, in fact, cheaper to provide than acute clinical space. The necessary investment is small relative to the overall health budget, but the potential good for the lives of those who have been bereaved is enormous. The possibility remains that good bereavement care will lead to shorter, less-intense grief responses and lower levels of psychological ill health afterwards.

What can the Oireachtas committee do? It can probably only encourage health policy that supports good end-of-life care, including early bereavement care, within emergency departments. Ensuring that it is on the agenda for health-care planning is critical to developing a response from planners, managers and clinicians that will lead to a greater, more positive, societal impact.

It behoves us all to consider how and where we would wish to die and to plan for "a good death" on a personal basis. Once such a plan is devised, it should be shared with others, such as the next-of-kin and the family doctor, with clarity achieved on the wishes of the person involved. Using the "think-ahead" template developed by the forum on the end of life and supported by the Irish Hospice Foundation is a readily accessible way to deal with this issue. It is important to ensure access to this on a 24-hour-a-day basis, ideally in a central online register, to ensure that appropriate levels of care and comfort can be provided consistent with the wishes of the person and his or her current clinical status. Ideally, every competent person entering a nursing home for long-term, end-of-life care should be provided with support to fill in that template.

A peaceful, timely death at home or in a nursing home should be seen as the norm, rather than an aberration and a failure of the health care system. Ultimately we will all die, but there are ways in which we can make that a much more palatable and acceptable process of transfer.

Jerry Buttimer (Cork South Central, Fine Gael)
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I now call Dr. Geoff King, who is director of Pre-Hospital Emergency Care Council and clinical lead of the HSE national transport medicine programme.

Dr. Geoff King:

I will take the liberty of leaving the committee with my background paper and will speak briefly off the cuff. Members will be able to tell by my accent that I am from Kildare. I have lived there for 12 years. I am happy to live there and will continue to live there forever. I will only leave if my second wife wants to leave, because my first is not going anywhere.

I was medical director of the flying doctors in Queensland until 2001. We covered a population of 4 million, which is similar to the whole of Ireland. I was happy there and had 50 doctors reporting to me. We had about 100 nurses in the team. It is at the acute sharp end - better than some services in the world and probably could learn from some others. I arrived in Ireland as the inaugural director of a nice piece of secondary legislation to establish pre-hospital services in Ireland, which at the time had a basic life-support service. The ambulances were driven by what were called "drivers", which offends me. They were not regarded by the community or people as clinicians but were regarded as drivers who would transport the nurse out and bring patients back into hospital.

When I arrived I wondered what I would do. I decided I should look at what was happening on the ground.

I decided to go with a newly-appointed deputy and visit every ambulance station in the country. I had read all the reports and reviews. Everything had been written down that needed to happen. I agreed to do the exercise. I had some preconceptions about what I would find and decided to validate what I saw. We went to every ambulance station in the country over 18 months. It was hard work and I got some fright. I suddenly had to shift my outlook. I had worked my whole life in acute sharp-end medicine but I realised the best thing I could do to help to improve sharp-end medicine in Ireland was to improve the care of the dead and dying. Frankly, Ireland was doing it appallingly. I am not talking about the wake, I am talking about the technical aspects of dying. I went back to my office and my brief became where to begin. I will march the committee through several points.

There was no policy or procedure in place or legitimisation to say a person was dead. The person could be cold or stiff but not dead. Some of the drivers were great people who had come out of the boiler rooms but they were throwing in their keys despite the training and orientation for sharp-end ambulance work. I spoke to one man who has recently retired. He went to a major bus crash on day one where children were dead as well as others with multiple injuries and whatever. That was his orientation. I can talk to the committee about his fading or whatever another time, but he ended up at a lower tier professional level and he had a valid role to play. Anyone who ended up subsequently being trained at his station had luck. The station got another man who was sharp-end, one of our new graduates at the higher level. He had old soap and new soap so he could learn from the old and new ways. Let us put that aside.

We had to put a policy in place that recognised the problem because some people were actually trying to resuscitate, do mouth-to-mouth or full bottle, bag and mask, on a cold stiff body. At the time they had nowhere to go but the emergency department. It may have been a long way, perhaps an hour away. I mean no disrespect to them, because I would have done the same, but they sat in the back and folded their arms and did not continue cardiopulmonary resuscitation, CPR, because they knew it was death. They then arrived at an emergency department and the emergency department inherited the patient. The doors opened and the paramedics started back doing CPR. I imagine the emergency department people would have said to forget it and not to waste their time on it.

The Pre-Hospital Emergency Care Council, PHECC, has developed clinical practice guidelines and now it is legitimate that there is a recognition of death. If a person is a professional, either at emergency medical technician, EMT, or paramedic level, he does not do that. Instead, if he arrives and there is a dead body, it is not our business and anyway the ambulance may have three 999 calls and if we do not get to them in 80 minutes, there may be a cardiac arrest because we know that two of them are in their mid 40s. Anyway, whatever the age group, these people can be salvaged and can have a normal life while we are wasting our time in the back of an ambulance. The case is fixed and there is no job because it is done.

The next issue is the case where we cease resuscitation. We train our people now like in North America, Australasia, most importantly, and in the United Kingdom in such a way that if we have done all our tricks and our best people have given every drug and intervention but there is a flat-line trace, then the answer to the question on the chances of survival is: "None". Then we cease resuscitation and agree to stop because it is all over.

PHECC has now legitimised that. A paramedic can do that and stop now, whereas before he used to have to keep going. These people would keep going to the emergency department and the staff in the emergency department would take the view that they have an ongoing resuscitation. The emergency department would then spend a minimum of 20 minutes, but we know that 20 minutes goes into an hour and then there is the family aspect and whatever. Again, people become tied up. Am I running out of time?

Jerry Buttimer (Cork South Central, Fine Gael)
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I am sorry to have to tell you that you are.

Mr. Geoff King:

We introduced tubes. Everyone thinks these scenes are dignified but they are not; they are full of vomit or whatever. The tubes have made it more dignified. The view is that the job is done but there are two more to do. We cannot pronounce death. Now, the paramedics cease resuscitation but they must wait for the doctor or general practitioner car. At night time, they may be at the scene where a person has died in home or on the roadside. They pronounce death but nothing is going to be done and they must wait for a doctor. It could be ten minutes, one hour or the next day. Hours are wasted when those people could be out resuscitating others who could survive. What we need is endorsement. We do not even need legislation because the city coroner is on board, and we are going to meet the coroners, but we need support for the view that it is legitimate to do what they do in the United Kingdom and Australasia. It should be signed off that a paramedic can pronounce death. It is safe. It is crazy that we have to wait for a doctor, who has other work to do, to do it. That is where we need help.

There is another issue relating to the do-not-resuscitate order. Let us think ahead. The HSE has a draft document on do-not-resuscitate orders and the executive must plan to legitimise it. We need to have it legitimised because we are currently in no man's land and people who do not want to be resuscitated are being resuscitated. In those last two instances we were missing response times. The committee members have read the paper. People who could be saved are not getting a shot because we are wasting time on the acceptance that only a certain person should be able to pronounce death and an acceptance that we need do-not-resuscitate orders. We do not need legislation but the legislation could help, perhaps, in a secondary way.

Finally, we need more ambulances.

Jerry Buttimer (Cork South Central, Fine Gael)
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Our next speaker is Margaret Naughton, secretary of the National Association of Healthcare Chaplains. You are very welcome.

Ms Margaret Naughton:

I thank the committee for the opportunity to be here this morning. I am here to represent the National Association of Healthcare chaplains, NAHC. The NAHC is a professional association whose members serve in hospitals and health care facilities. The purpose of the NAHC is the mutual encouragement and support of its members in ministering to patients, their relatives and staff in health care facilities. This organisation, founded in 1981, is in essence a proven professional support body for chaplains.

What exactly is a chaplain? A chaplain is a person appointed to provide spiritual and religious care to all patients, visitors, staff and volunteers in the health care setting regardless of faith or no faith. A chaplain can be ordained or lay. Chaplains are people of faith who have engaged in the clinical pastoral education programme, a hospital-based experiential programme founded by Anton Boisen to work with and minister to living human documents.

Thomas Moore, in his book, Care of the Soul, wrote:

Modern medicine, on the other hand, is hell-bent on cure and has no interest in the body’s inherent art. It wants to eradicate all anomalies before there is a chance to read them for meaning. It abstracts the body into chemistries and anatomies so that the expressive body is hidden behind graphs, charts, numbers, and structural diagrams.

A chaplain works to provide empathy and support to those who find themselves in a health care system increasingly coming under pressure for many reasons. Chaplain address the spiritual and religious needs of the patients they encounter on the wards. By listening with empathy in a compassionate non-judgmental manner, a chaplain provides support for those who are struggling for whatever reason.

It must be remembered that a hospital is a microcosm of society. I mean that all the problems that exist in our society exist also in our hospitals. After all, the problems that people have in their daily lives come with them when they enter hospital.

Consequently, chaplains are faced with the harsh realities of loss, loneliness, addiction, unemployment and so forth when they come into work each day. In a difficult working world, chaplains provide spiritual care and this is done through the quality of their presence, by accompaniment and by companionship. Chaplaincy is about reaching out to those who are distressed for whatever reason. Where death and dying is concerned, the death of a loved one is one of the most intensely painful human experiences any human being can suffer. Not only is it painful to experience but it also is painful to witness, if only because one feels powerless to help. In the context of a maternity hospital, for example, the loss of a baby may be a parent’s first experience of death. The length of the pregnancy has no relation to the depth of grief and sense of loss experienced. In paediatric ministry, chaplains work with parents whose children have been diagnosed with a life-limiting condition. Often and regrettably, death is not the worst thing. There are living deaths in which parents must mourn the loss of a healthy child and learn to live a life full of uncertainty and stress, often with little or support, and to care for a highly-dependent child or young adult, cope with multiple hospital admissions, provide high-dependency home care and care for siblings, as well as to try to maintain their relationship with their partners. In the case of an accident or sudden death, the sense of trauma, disbelief and anguish is enhanced as the death is sudden. The impact is immediate. A person’s life is torn asunder instantly and without warning.

In essence, what does a chaplain really bring to end-of-life care? A crucial element of our training is self-awareness and being challenged to deal with our feelings about our own mortality, fears and anxieties. Having confronted these during our period of training ensures that we are equipped to cope with the vulnerability of those we seek to help in stressful situations and particularly at end of life stage. We all experience the death of a loved one at some stage in our life but the quality of care given to family members around the time of a death - especially when the death is sudden - can and does impact on the grieving process later on. People speak of remembering what the chaplain suggested, did or wore months and even years after the death of their loved one, which is evidence of the impact of the chaplain’s intervention with the family. Chaplains try to ensure that the needs of the patient and family members are met as much as possible. In research recently commissioned by the National Association of Healthcare Chaplains, NAHC, and not yet published, it is clear from the findings that most families expect to encounter a chaplain when their loved one is dying in hospital and actively seek the presence of a chaplain. Chaplains pray with patients and offer to link families of different denominations and faiths with a minister of their own faith when requested or where possible. Chaplains support and accompany families when their loved one is actively dying and during the immediate mourning period in the hospital. Chaplains endeavour to prevent people from dying alone. In the absence of loved ones, a chaplain will sit with a patient assuring him or her that he or she is not alone. Chaplains are trained in debriefing and this is offered to staff who have been affected by workplace traumas and deaths.

In conclusion, I will make our recommendations and closing comments. Working in hospitals is difficult to say the least. It is emotionally fraught and draining. The complexity of illness, the levels of care and the turnover of patients have increased considerably in the last few years. To continue to provide chaplaincy services into the future, we suggest that the Health Service Executive, HSE, embargo be lifted on recruitment in order that more chaplains can be employed. On foot of the reduction in chaplaincy posts in some hospitals, the service has been reduced to a simple "meet and greet" service, which is not acceptable. To die in a public ward is not conducive to dying with dignity. We ask that in every hospital, a single room be made available each time a person is ending their life’s journey. This will ensure that for the patient and his or her family, the end of life experience is a private family one and not one in which a person’s dignity and privacy become compromised.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Naughton and welcome Dr. Deirdre Madden, lecturer in law in University College Cork, UCC.

Dr. Deirdre Madden:

I thank the joint committee for the invitation to speak today. While my background is as a senior lecturer in law in UCC, specialising in medical and health care law, I have also been involved in the area of medical ethics and patient safety for many years. Although most of us would prefer to die at home, unfortunately it is not always possible for various reasons. A hospital environment often can be a busy, noisy, crowded place to die with too little time and space given to the privacy and dignity of the person. Bad news is delivered in wards with other patients overhearing from behind the bed curtain, families wait anxiously for hours to catch a quick word with a busy consultant and patients often are left wondering what is happening to them.

I do not intend to speak about the physical environment in which people die, as the joint committee has already heard submissions on this topic. However, I would like to speak about the duty of care owed by a hospital to patients and their families and what this means. I am not speaking specifically about a legal duty, breach of which might result in litigation for negligence, but rather a broader ethical duty of care that imports the values of respect, compassion and honesty. To my mind, such a duty arises from the inherent nature of health care itself, which is to care for the person, physically and psychologically, to cure where possible and to provide relief, support and comfort where cure is not possible.

The importance of respect for the dignity of the dying person is a principle with which no one would argue. While we all appreciate the huge and important advances that have been made in medicine, at the same time we must ensure the care of the person does not become overly medicalised to the extent that sight is lost of the fact that the person in the bed is an individual with a voice, wishes and interests, who may have already come to terms with his or her impending death and is not simply a patient for whom treatment is being provided by numerous health care professionals across multidisciplinary teams in an attempt to maintain vital functions. Although palliative care has encouraged medicine to be gentler in its acceptance of death, medical services sometimes continue to regard death as something to be resisted, postponed or avoided. The challenge for doctors here is to balance technical intervention with a humanistic approach to their dying patients. We need practices and structures that offer a compassionate and competent response to illness, fragility and mortality. We need a patient-centred approach, which will focus on the patient’s health, identity and relationships, as well as the processes that support the delivery of good care.

I wish to draw the joint committee’s attention to the national consent policy that was published in May 2013. This policy is intended to apply to all health and social care services conducted by or on behalf of the HSE. I was the chairperson of the national consent advisory group that drafted this policy and I look forward to its effective implementation to ensure a consistent and high-quality consent process in all hospitals across the country. There are a few matters in the policy to which I wish to draw members' attention. First, on the theme of respect and dignity, consent is a process whereby a person gives permission for an intervention following communication of information about that intervention. The ethical rationale behind the importance of consent is the need to respect the person’s right to self-determination, that is, his or her right to control his or her own life and to decide what happens to his or her own body. Good health care decision-making involves trust between the patient and doctor, open and effective communication and mutual respect.

It is important to acknowledge that although those providing health care can usually claim greater expertise in decisions regarding the means to achieve

the end of better health, such as what medication to use, we must bear in mind that the patient is the expert in deciding what ends matter to him or her, how they want to live their lives, what risks they are prepared to take and so on.

I refer to the role of the family. The national consent policy points out that no person, such as a family member, friend or carer, and no organisation can give or refuse consent to a health or social care service on behalf of an adult patient or service user unless they have specific legal authority to do so. This also means that a family member is not legally entitled to direct that any services be provided or withheld or, more important, that any information be withheld from a patient. There is very little understanding of this position among families and within the health care system. Service providers should aim to have good relationships with patient's families, in particular to consult with them about what the patient may or may not want for themselves if the patient is unable to communicate those wishes. However, in reality, this can be challenging to clinical staff where there is disagreement within the family or where there has been a breakdown of trust between the family and the clinicians. Further support, training and guidelines as well as more public awareness and discussion in this area would assist everyone involved in these potentially difficult situations.

I refer to do not attempt resuscitation, DNAR, orders. A DNAR is a written instruction to health care staff not to attempt CPR in the event of cardiac failure. It does not have any application to any other aspect of the patient's treatment and care. There are concerns about a lack of consistency in how resuscitation decisions are made and a lack of clarity about the decision-making process. The consent policy provides clarity around the issues only in the context of consent. It does not provide guidance for technical and practical considerations relating to resuscitation procedures. The national consent advisory group was of the view that there is a need for national guidelines on these issues and I submit that this area would also benefit from wider public discussion so that the public is aware of the decision-making process involved here.

In 2005, I was appointed by the then Minister for Health, Ms Mary Harney, to write a final report on post mortem practice and organ retention. In my report, I highlighted the lifelong nature of bereavement, and the instinct we have when a loved one dies to provide the deceased person with as much dignity as possible even in death. Hospitals must be mindful that they have a duty of care not only to the patient but also a duty which extends after death to show respect for the person's body and to minimise the distress of families by ensuring that appropriate measures are taken in caring for the body. What the hospital staff see as a body is still someone's mother, father, spouse or child even after death. In particular, where a post mortem examination is to be carried out, great care must be given to the way in which this is communicated to families and their authorisation sought for this procedure. The family's experience of the death of their loved one will last for months and years to come and will affect their quality of life and emotional health in many cases.

Although improvements have taken place in this area through the publication of national standards for post mortem practice and work done by the faculty of pathology in its quality assurance framework, it is regrettable that the Human Tissue Bill, which was recommended in my report in 2005, has yet to be published and enacted. The enactment of this Bill would ensure clarity and consistency of standards in regard to obtaining consent or authorisation for post mortem examinations and organ retention and provide reassurance to the public that the organ retention controversy of the past will never happen again while at the same time, encouraging medical education and valuable and ethically approved research. I urge this committee to recommend to the Minister the enactment of this Bill at the earliest opportunity.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. Madden for her presentation. Our next speaker is Mr. Bryan Nolan, communications and development co-ordinator in the Irish Hospice Foundation. I welcome Mr. Nolan.

Mr. Bryan Nolan:

I thank the Chairman, Deputies and Senators. We welcome this opportunity to talk to the committee about staff development and education in regard to good end-of-life care in Ireland. It explicitly acknowledges that we can make a difference through awareness-raising and training for health care staff and professionals. At the end of the day, I am here to remind everybody that fundamental to good end-of-life care is the person, the patient or the resident. We have to keep them at the centre of everything we do.

As we have heard, end-of-life care is important to every one of us. It will be of interest to all of us. Sooner or later, it will be us or someone we know and love. Death and dying are part of the human experience. In the Irish Hospice Foundation, we believe that nobody should die alone, frightened, lonely or in pain. Unfortunately, for people in Ireland today, death and dying can be a very lonely experience. If one was parachuted into Ireland from outer space and landed at a funeral, one would think we were brilliant at death and dying. We are great when people are dead. It is no problem in that we do not have to talk to them. We can talk about them and we turn up in our thousands to celebrate their passing and it is a wonderful experience. People often say they are not afraid of being dead but that they are really scared about what comes before it and about the dying process. Why are they scared about that? They are scared because it is the loss of autonomy, the loss of their sense of control, the loss of their dignity and the fact that nobody will engage with them about what is important to them and their concerns.

It is estimated there are approximately 95,000 people working in health care in Ireland. If one is working in health care, potentially, death and dying will be part of one's job and we need to recognise that. Today in Ireland, 80 people will die, five of whom will die in a hospice which is the five star care one will get. What about the other 75? Can we ensure that those 75 have access to good care too? The only way we will do that is if we train and enable staff through good education programmes so that they will be able to engage with patients or residents about their concerns and end-of-life. Unfortunately, at the moment, it is a little bit of a lottery and it is down to whom one meets on the day and how comfortable the person who is dealing with one or one's family is with end-of-life, conversations about end-of-life and what is important.

The Irish Hospice Foundation has been involved in developing or grant-aiding the development of a wide range of initiatives aimed at health care staff in the last decade or so. We have provided training for more than 5,500 people - members of staff in the health care setting - in the past three years to help them to make a difference to people at end-of-life. We have three different staff development workshops. Two of these workshops specifically focus on communication and connection with people at end-of-life. The third helps staff break bad news more sensitively. Details of the workshops are in my written submission. We know these workshops work. We have had them evaluated by UCD in 2011 and by Trinity College in 2013 and both of those evaluations attested to the overwhelmingly positive reactions of those who attended.

What are we trying to do? The aim of the workshops is to try to help staff to be a little more confident, competent and comfortable around the people for whom they care at end-of-life and to be confident enough to talk to them about what really matters to them. In this sense, our workshops are very focused on person-to-person communication because we know communication is central to good end-of-life care. In addition to everything else members have heard, I am here to remind them it is fundamental to good end-of-life care that we keep the person at the centre of everything we do. We remind staff that good end-of-life care is fundamentally about respect and about really connecting with the person. There is no better way to show respect to someone than to talk to them and to listen to them, especially at a time of loneliness and distress. There is no better way to care for somebody than to actually give somebody one's wholehearted attention and to allow him or her to express his or her concerns and for us to do our best to facilitate his or her preference. A frequent outcome of participation in our workshops is that staff discover that they can become more relationship-focused within the course of the normal working day and that it is not just about the task but about seeing the person.

We take a hearts and minds approach. When the thank you cards come in, they thank the staff for being so professional and compassionate. They always link the two. People want us to be professional - that we know what we are doing and that we are confident in what we are doing - but they want us to be compassionate as well. When we have the balance of hearts and minds, then one can fly if one is the patient receiving that service. We look after people's minds. We educate minds by giving staff good practice tools and theories about how to talk to and listen to people about their concerns and preferences and about how to break bad news, which is the hardest part of anybody's job, how to help people deal with the impact of that news and how to initiate difficult conversations and respond to difficult questions.

We also put a lot of emphasis on communication about the heart aspect that death and dying are not just about procedures but about my passion that we need to get this right. People only die once, so it is not a one size fits all. We cannot pick the book off the shelf and read all about it and have all the answers. We are all different, we have different needs and different worries and concerns. I cannot assume I know what someone wants unless I ask the person. I will not find out what is important to the person unless I take the time to listen. All too often, patients and residents will worry about their deteriorating condition and make many efforts to engage with staff.

They will say, "I am not getting better, am I?" or, "I don't think I am going to make it. I think I'm finished. Am I dying?", and all too often the response of the staff, who are coming from a good place, is to try to keep the person up-beat and hopeful rather than finding out what lies behind that question. Relationships matter, but particularly when we are vulnerable. Relationships between patients and residents are particularly important.

What we are trying to get across is that our work with staff is about reminding them of their own humanity and to remember always that if they are dealing with a patient, a person is more than their illness. If they see them only as their illness they will miss out on huge opportunities for healing and wellness.

Patients will often ask us about their end of life. Questions such as, "Am I dying? I am not getting better" are often met with, "You're grand, pet. I'll get you a cup of tea". The question, "Am I dying?" will be met with, "Not on my shift". If someone was in bed and they had a sense that they were getting weaker by the day and that their life was slowing ebbing away, and if they were constantly asking the people caring for them, "Am I dying? I am not getting better. These tablets do not seem to be working any more" and getting the reply, "You're grand. We are going to look after you. Don't be worrying about that", how would that make them feel over time? Would they keep asking the question or give up? I believe most people would give up. The staff would then tell their relatives that the patient is getting very withdrawn. Why? Because nobody is engaging with that person. Nobody is asking the patient what is important.

I will tell the members a couple of stories, one of which in particular emphasises the need to engage with people. A staff member in a paediatric hospital I was working in told me this story against herself, so to speak. She said they had a little fellow with cystic fibrosis whom they knew since he was a baby. They knew all about him and knew all the members of his family, and he knew all the staff. She said he was not for transplant. Everyone knew he was a case for TLC. He was beginning to die. She went in to him one morning and asked him how he was and he replied, "I'm really lonely". She asked him what was wrong and he said, "Nobody is talking to me any more". That emphasises the importance of good training for staff in terms of communication. There is something about attaching end-of- life to somebody's condition. We all fall off a cliff, so to speak, in that regard. We stop engaging with people on what actually matters.

We mentioned earlier a good death. What is a good death? A good death is me being at peace with myself. For me to be at peace with myself I have to forgive myself, let go of issues, forgive others, have conversations about what I need to do, put things away and be in a state of readiness. How will I do that? The only way I will do that is if somebody sits down and is willing to have conversations with me, and the only way I will be able to have those conversations with that person is if I am trained to do it. We cannot assume that people have these skills because they do not.

In terms of what we are looking for, and we are talking about 95,000 people, we believe everybody should have access to training in end of life care. The system must take ownership of that training and development. The Irish Hospice Foundation recommends that the health service takes responsibility for delivering good end of life care training and development, and we must take on board the private contractors as well.

I will conclude on staff support. The system is creaking. Staff are doing their best to deliver good quality care but they are struggling with it. We are not looking for new five star centres or for more people to be employed. We want to get staff to acknowledge that what they do is very difficult. Not every death will affect one but some deaths will, and we need our colleagues to acknowledge that for us. The question to a staff member should be, "Is that family gone? How are you? Do you need to take five minutes? We will cover for you. Go off and have a cup of coffee" but the question normally asked is, "Is that family gone? Okay. I need you to do X, Y and Z". They write on every carer's tombstone "Own needs not met". We are very good at giving it out but we are very bad at nourishing ourselves. We must enable staff to recognise that this work is tough and that to continue doing it we must be skilled, and we must look after ourselves. I thank the members for listening and apologies for going over time.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. Nolan. I call the next speaker, Professor Cillian Twomey.

Professor Cillian Twomey:

I appreciate the opportunity to speak with the committee and recognise that as this is the last hearing the members have probably heard most of what has been said in some shape or form previously but it is useful to have an opportunity to stress some aspects of it.

First, I speak as a geriatrician, and there are many similarities between specialists in palliative medicine and specialists in geriatric medicine in that with the advancement of medical science many specialties now tend to be more single system specialties whereas geriatric medicine still retains a total person approach, which is important.

Second, in geriatric medicine mortality of patients under one's care is a more common phenomenon by virtue of the age of the patient group one manages. In our own department, for example, 43% of our patients are over the age of 80 although by strict definition one is elderly when one reaches 65; that usually insults most people who are 65, myself included. There is that total patient approach but there is a confusion of terminology. What is end of life care? What is terminal care? What is a patient who is dying, and are we good at picking up those particular elements of the life cycle? In some respects we are not, and that comes back to education and training and awareness.

Historically, in palliative medicine - members have heard a good deal about specialist palliative care and I support the strong call for its expansion where it is particularly deficient in numbers - those involved looked after patients only with cancer. Fortunately, that is no longer the case because as we all recognise, there are many illnesses other than cancer for whom there is a phase beyond the curative, which requires support. For example, in terms of somebody with advanced heart failure, and there is a gradation of heart failure, 70% of patients in the grade 3 or 4 heart failure category will die within 12 months but we do not suddenly announce 12 months before they die that they dying. Our approach to their management, as in specialist palliative care, will be to look after them to the best possible extent symptomatically through their final months but a recognition in that phase is important from an entire spectrum of issues. Have they sorted out their family arrangements? Do other family members realise the circumstances and so on?

We have heard already about the numbers of deaths and where they happen. Each death is unique, whether it is following a traumatic event, a murder, a car accident or an acute medical insult. A different set of activities might need to be activated in the context of a sudden unexpected death but there must be a series of policies to look after that particular case.

In elderly care medicine, most of the deaths are relatively predictable in the sense that they have multiple conditions that, ultimately and unfortunately, will be responsible for taking their life. My interest in this subject was energised considerably when I was invited to become a member of the Hospice Friendly Hospitals Programme steering committee in 2005. To some extent I was embarrassed that I had worked for 40 years as a doctor and never questioned the inappropriateness of multi-bed facilities in our hospitals. If any of us go to London for the weekend with our spouse and we put the card into the bedroom door we do not expect four other couples to be in the room when we arrive. Were that to happen we would be appalled but we think nothing of having sick people in multi-bed facilities.

In the context of end-of-life, it is essential that patients and their families have the opportunity of being in a private area but that is difficult to realise when the percentage of single beds in our hospital construct is so small. There is an infection control policy, which I support to some extent, to the effect that if somebody is readmitted to hospital who, in a previous admission, had MRSA up their nose, for example, which is of no injury to anybody unless they travel up their nose, they must be put into a single room on readmission to hospital. We do not have any such diktat stating that if somebody is dying we should put them in a single room. This event occurs 29,000 a year and I suggest it needs some addressing.

Roger Ulrich, whom I reference in my paper, has done a good deal of work on this area and the advantages are far greater than just dignity, respect and privacy for a patient and his or her family when they are dying but he has proven financial savings and greatly reduced hospital care infections by a single room policy. In my view every bed in a hospital should be a single, with the obvious exception of intensive care and high dependency units. That should be the target.

The benefits of hospice care are well-established and we are indebted to those in specialist palliative medicine for the degree to which they have raised our awareness of it. A different philosophy is required for dealing with patients coming towards the end of life. An interesting paper was published this year in the New England Journal of Medicine, which I reference, entitled Generalist plus Specialist Palliative Care. It states: "[M]any elements of palliative care can [and should] be provided by existing specialist or generalist clinicians [general practitioners and other health care professionals] regardless of discipline".

Who has responsibility in this regard? We all have responsibility. The national advisory committee on palliative care defines three levels which I instance in my paper. Level 1 is a core skill that every health care professional working in a hospital or a community care setting should be able to deliver. As a geriatrician I could not possibly be asked to look after every old person who is sick, and a specialist in palliative care cannot be asked to look after every person, regardless of age.

Let us not forget that dying in younger people is equally in need of this support. If there is a philosophy of understanding the core issues involved across the board there is a better chance of a total improved care, on the basis that a rising tide raises all boats. In fact, ironically, the care of those in hospital who are not dying will be enhanced if that culture and philosophy is pervasive. The ageing population is something to celebrate not to criticise as is sometimes the case when people talk about the “burden of older age” and “bed blockers” and so on. Most of us are lucky enough that we will be very healthy. There is therefore a need to acknowledge the fact that numerically there will be more older people, and certainly more aged over 75 and 85, who will have medical problems, multiple pathology, for whom there will be a phase when they are dying.

Some of the decisions one has to make are challenging. Should somebody who is in a nursing home, or their own home, with a debilitating stroke disease and perhaps dementia as well, be admitted or transferred to a hospital straight away because their temperature rises or they get another infection? If one calls the out-of-hours medical on-call service the team on duty from midnight to 8 a.m. is not necessarily familiar with the patient or the setting. There is a low enough reflex to press the ambulance button to transfer that patient. That reflects a lack of dialogue in that institution between the health care professionals about whether if Cillian, who has these awful irreversible end-stage conditions, gets a temperature, we can deal with that in our own setting and not be afraid.

Have we asked the patient? I agree with Dr. Madden that there is a presumption that the dialogue is between the clinician and the family members. That is an even greater presumption in older age. There is an automatic presumption that if one is 80 one could not possibly answer a question whereas as we all know that is quite untrue. One's first loyalty and commitment is to the patient. Very often a patient will tell the doctor not to talk to his son and to please talk to him. That is not uncommon. Have we asked the patient what he would like to do at the end of life? Not often. In the geriatric unit in Cork we have a "do not resuscitate" policy, which works quite well but it has been challenging to introduce it. The centre of gerontology and rehabilitation in UCC is undertaking a study led by Professor Willie Molloy which is studying advanced care planning and the impact that might have on the residents of three large residential care facilities in the Cork-Kerry region. We are educating the residents who are capable of participating in such an exercise about advance care planning, seeking their views on it. We are also engaging in an education programme for the professionals, the nurses and doctors in those areas. We will study a certain number who have been given this training programme and compare them with another group who have not been on the programme to see the outcome. It might inform the current Dáil statute discussions on advance care planning and on capacity.

I support the notion of strategy. It has to be part of every service plan that there is an end-of-life, bereavement, death package. We need local leaders. Of the hospice friendly hospitals programme, which involved 40 hospitals, there are only four coordinators of end-of-life care paid on an ongoing basis. We cannot function without leaders at local level. I commend the committee for holding discussions on this topic.

Jerry Buttimer (Cork South Central, Fine Gael)
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Our final speaker is Ms Joan Kelly who is a nursing services manager with the Irish Cancer Society. Ms Kelly is very welcome.

Ms Joan Kelly:

I thank the Chairman and the members of the committee for inviting me here this morning. I want to speak about the needs of cancer patients and make recommendations for end-of-life care for them that will better meet their needs. Cancer is one of the leading causes of death in Ireland and cancer patients are the largest group to avail of specialist palliative care. This is unlikely to change.

Cancer accounts for over 8,600 deaths in Ireland every year. It is predicted that the number of cancer cases will increase from around 30,000 as it is now, to 42,000 in 2020. Improvements in cancer detection and treatment mean that cancer survival rates are improving, with 65% of all patients diagnosed surviving their illness. New treatments mean that patients with cancer live longer but will require end of life care. An ageing population with complex medical needs is likely to increase demand for palliative care services. This presents a significant challenge for a health system undergoing extensive reform in the face of increasing financial difficulty. Palliative care is an approach to caring for people with and illness that will not be cured or is life-limiting. It can be delivered in a variety of settings and no doubt the committee has heard more about that in the past few days. It is also important to note that palliative care can be delivered in any setting, acute hospitals, community hospitals, nursing homes, hospices or in the patient’s home. The Irish Hospice Foundation found in 2004 that two thirds of people wish to die at home but unfortunately the national average is approximately 26%.

In supporting end-of-life care for cancer patients in the primary care setting the Irish Cancer Society provides a night-nursing service to patients in their own homes. This service began in 1986. It is the only national palliative care service available to cancer patients at night in their own homes. The Irish Cancer Society receives no State funding for this service and depends entirely on public donations. The service plays a vital role in supporting integrated palliative care without which many patients would have to be admitted to hospital and could not continue to receive care in their own homes. An admission to hospital for people who are as ill as these patients are would unfortunately result in their death's occurring within 24 or 48 hours. It is imperative that patients being cared for at home continue to be cared for there and have the choice of place of care for their death.

In 2012 the Irish Cancer Society provided 7,600 nights of care to over 2,100 cancer patients. The average cost of a night of care is around €350. The demands for this service are increasing at a rate of approximately 7% a year. It costs the society approximately €2.6 million to provide night-nursing to the entire country. The Irish Cancer Society will seek further funding and policy development to support integrated palliative care in primary care and recommends that the money-follows-the-patient model should incorporate end of life care at night in the patient’s home. There is a gap in the provision of home care as the Irish Cancer Society night nurses are available generally between 11 p.m. and 7 a.m. In general day services operate between 9 a.m. and 5 p.m. which results in a gap in provision between 7 a.m. and 9 a.m. and 5 p.m. and 11 p.m. This can cause considerable distress and is a barrier to patients’ remaining at home. The gap needs to be bridged by integrating night-nursing services into palliative and primary care services so that patients have access to 24 hour care if and as required.

Palliative care patients require timely access to services and care and should be able to access those services in the most efficient and stress-free manner. Patients with a terminal illness are entitled to an emergency medical card, valid for six months. A doctor’s or consultant’s letter stating that the patient is terminally ill or at the end of their life is required to obtain such a card. Patients with an incurable cancer who are not expected to survive longer than six months must be reassessed on financial grounds if they survive longer than six months after the card was provided. This requires extensive paperwork at a time of considerable distress for the patient and the family.

It is estimated that 20% of these discretionary cards require such a renewal after a time period of six months. The society has heard that doctors and consultants may be reluctant to write "terminal" or "life-limiting" on a letter and give that to the patient in support of their application for a medical card. The Irish Cancer Society recommends that patients in the advanced stage of their illness be granted a special status that does not require them to be financially assessed at a time of significant distress.

In regard to psycho-oncology services, I have some points to make and I will then conclude. Some 40% of cancer patients will experience significant distress as a result of their diagnosis. This requires the intervention of a mental health care professional to help them cope with what could already be a terminal illness at the point of diagnosis or could soon become a terminal illness. The strategy for cancer control 2006 recommended that the HSE should ensure access and that comprehensive psycho-oncology and psycho-social support be provided to all cancer patients and their families in each of the managed care networks. Currently, two of the eight designated cancer centres have dedicated psycho-oncology services. The Irish Cancer Society recommends that dedicated psycho-oncology services be delivered in each of the designated hospitals where cancer patients are treated and that psycho-oncology should be part of the multidisciplinary team and involve patient care from the point of diagnosis onwards.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Kelly for the presentation and for coming in at such short notice. That concludes the presentations. We now move to the question and answer session. We have apologies from some of the members who have had to leave because they must go to the Dáil Chamber. Deputy Ó Caoláin is taking Leaders' Questions, Deputy Kelleher had another meeting and Deputy Mitchell O'Connor is also speaking in the Dáil. As members will know, parliamentary democracy means they are crisscrossing in different areas. I apologise that they are not here. I call Deputy McLellan.

Sandra McLellan (Cork East, Sinn Fein)
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I welcome the witnesses and thank them for their interesting presentations. We know we have a lot to do in this regard. I commend the witnesses on all the hard work they do, of which we are very aware.

A number of points came up again and again in the presentations. A significant one is the unfitness of our hospital system for end-of-life patients and caring for the bereaved. Is there a shortfall in training for end-of-life care and what forms of training do we need to provide? Mr. Nolan was right about the importance of seeing the person beyond their condition of illness and making a connection. Does he imagine that different levels of training would be useful, such as specific techniques and skills in regard to bereavement awareness? Does he believe training for dealing with the bereaved should be part of this?

Jerry Buttimer (Cork South Central, Fine Gael)
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We will suspend as there is a vote in the Dáil. I apologise to our witnesses.

Colm Burke (Fine Gael)
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There may well also be a vote in the Seanad on the Order of Business.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will see. We will resume after the Dáil vote.

Jerry Buttimer (Cork South Central, Fine Gael)
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I apologise to our witnesses for the lengthy interruption. We did not realise the Taoiseach and party leaders would be making statements. I hope the witnesses are suitably refreshed from their respite. Deputy McLellan was in possession.

Sandra McLellan (Cork East, Sinn Fein)
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I am very sympathetic to the challenges faced by chaplains. They are reduced to meeting and greeting on many occasions. Would Ms Naughten agree there is a structural need for the health care system and hospitals to be more responsive to the bereaved and would it aid the work of chaplains if this situation was to improve significantly?

Ms Margaret Naughton:

Absolutely, yes.

Jerry Buttimer (Cork South Central, Fine Gael)
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Sorry, Ms Naughton, I will take questions from the three members first.

Sandra McLellan (Cork East, Sinn Fein)
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Consent for procedures is a tricky area and the responsibility regarding the treatment rightly lies with the individual unless they are unable to give consent.

Regarding mental capacity for consent, does McNaughton believe our mental capacity laws are adequate or do they create difficulties for those caring for people with mental disorders at the end of life?

Mr. Plunkett made some interesting points, particularly on the importance of the role of pain relieving medicines and treatments. I ask him to expand on that. What are the key challenges with regard to pain relief in today's health care system?

I ask Mr. Plunkett to expand on the reluctance to allow frail and elderly men and women die peacefully in nursing homes, which is somewhat troubling. In what respect has the Leas Cross controversy affected that issue?

Ms Kelly's points about the medical cards were well made. I am sure she is well aware that this issue has been discussed regularly and I hope it is something on which we might be able to come to a positive conclusion in the future.

Professor Twomey instanced the proportions of those who die between long-term residencies, hospitals and their own homes. Does he believe there is any likelihood those proportions might change over time? Should we endeavour to change that or is that simply the way the process works?

Regarding end of life proofing of homes, is that an issue which needs to be considered and what role could it play in ensuring quality end of life care?

On the point Professor Twomey made earlier regarding the perception that people of 80 years of age may not be able to answer questions, many people aged 80 are running countries. That puts an end to that argument.

I found Mr. King's contribution extremely interesting; I could listen to him speaking all day. I ask him to expand on the final point he made about the need for more ambulances.

Jillian van Turnhout (Independent)
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I thank the witnesses for their comprehensive presentations to us. I will not touch on every presentation but a general thread running through them was the relationship between the staff, the patient and the relatives - the triangle, so to speak. Mr. Nolan spoke about staff being confident, competent and comfortable but my thoughts were about the patient and words such as "consent", "choice" and "control". Listening to what many people said, I believe we remove much of the control from the patients. Dr. Madden said that the patient is the expert. I wonder if that should be the title of our report in terms of putting the patient first and foremost.

This morning we are focused on the care element at end of life. Everybody focuses on the end of life and forgets the care element that is so important but there is an issue about control and the interaction with relatives. I agree with Mr. Nolan on the staff training issue but relatives also face a cliff edge and in that respect they do not know the vocabulary or whether they are taking the right approach because they do not necessarily believe that somebody is advocating on behalf of the patient. They often do the wrong thing in trying to do the right thing for their relatives. Do the witnesses have views on how we can raise greater awareness among the public in that regard?

That brings me to a specific issue raised about which I am concerned, namely, the "do not attempt to resuscitate" issue. I did not realise that the legal basis was unclear. Dr. Madden spoke about the issue of consent, and Dr. King raised it also, but because it is not clear my experience is that the relatives have to unnecessarily repeat the request, which can sound callous at a very sensitive time for the patient and the family. That aspect hit home for me. There has been talk about advanced care directives, and the issue of the timing of when those advanced care directives should be discussed arose. That is something we must take on board.

Dr. King gave us compelling messages on the human tissue Bill.

I agree strongly with Professor Twomey on the issue of single rooms. Having that space is important on so many levels in terms of the patient's dignity.

On the medical card issue raised by Ms Kelly, we have had discussions here with the Minister for Health and representatives of the Health Service Executive about the six months aspect. Effectively, a patient almost has to apologise for living more than the anticipated six months. We have heard of cases where the patient does not want it written on their form that their condition is terminal. The family and others may know but we all know people approach these matters differently and to have the word "terminal" written down can be distressing. A number of issues intermingle in that regard.

I thank the witnesses and ask them to reflect on some of the issues I believe are important. Relationships matter greatly. In terms of the chaplain service, I would consider providing facilities and spaces. I am sorry but I had not realised that the HSE employs chaplains. We need to examine all those inter-relationships with a patient.

My final point is about a concern I have that an allocated staff member deals with the death discussion. If a patient were to ask that question, my understanding is that all staff should be present, certainly from listening to what several witnesses said, including Mr. Nolan, and not postponing that discussion. It should not be done bluntly but there is a way to do it. When we are considering our report we must ensure that it is not about having designated people. It is too easy, when considering reports, to say we will designate people to do this and that because from what I am hearing we should be providing a seamless service. That is more of a commentary, Chairman.

Colm Burke (Fine Gael)
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I thank all the witnesses for their presentations but also for their dedication and commitment to the work they are doing. It is important that we give recognition to the important part they play in this country's health service.

I come from a legal background and many of the issues raised touch on the legal area. I listened to what Dr. King said about not doing resuscitation but an issue arises in that respect. If medical personnel who are called out to a house arrive and are seen not to take any action, the blame game starts and they find it difficult to try to explain the reason they are not taking action. The easiest course for them to take, therefore, is to take action even though it might not be the best approach if the person has died but they are afraid to be seen to be not taking action. That is an issue that arises for staff in those circumstances.

Likewise in hospitals, medical negligence is the biggest growth area. It is not necessarily about the standard of care being provided but that people appear to have more access to information and are more willing to go down the legal route. That is a huge issue for medical staff. Professor Twomey will find from his experience that it is putting people into various corners from a medical care point of view. I do not know how we can deal with that but it must be tackled. We set up the Injuries Board to deal with claims arising out of car accidents and industrial accidents but we have done nothing to review and change the way we deal with litigation involving medical negligence cases. That is something we need to review.

Dr. Madden spoke about the role of the family in a hospital setting.

I had a case myself a few years ago where someone was calling to an elderly person three times a day and providing all of the care for that person, who had no contact at all with his family. The person was then admitted to hospital and the family instructed the hospital that the care assistant was not to be let near the ward. The difficulty for the staff in the hospital is how to deal with that. Even though the person was competent to give his own instructions to the hospital staff, they were getting caught between the two sides. The person died in hospital and was traumatised as he died because he felt his care assistant had deserted him, whereas in fact it was the other way around. I have seen that issue arise on a number of occasions. How do hospitals deal with that?

The other issue raised was about staff support. There is not enough staff support in hospital units where a death rarely occurs, and when it does occur, there are no procedures in that setting. People can be working in a particular unit where death does not occur that often, and there are no procedures for them. I have come across staff in such situations who are very traumatised by what has occurred, but there is no fall-back for them. We should look at that within hospitals. There is a better structure in elderly care for dealing with that, but in other units that is often not the case, and I think we should look at that.

One of the frightening things I have found with elderly care over recent years is the amount of litigation arising in respect of the administration of estates. In my first 20 years of practice, I never had to deal with this litigation, but it is arising a lot more. It is coming into the hospital setting and it is a case of how we deal with that through education and information. We need to look at it.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will start in reverse order with Professor Twomey.

Professor Cillian Twomey:

Deputy McLellan asked whether the percentages of deaths can change. First and foremost, nobody wants to die. If we were to ask somebody where they want to die, they would first say that they do not want to die at all. By that I mean that we do not really think about dying. It is kind of a taboo subject and people have very different and personal understandings of it. That is again an educational deficit that needs to be addressed. When people are asked where they would best like to die when they die, they all say they would like to die at home. That is nice and appropriate, but we must caution that sometimes it is not appropriate that they die at home because their needs are such that they need to be looked after in a separate environment. Even though Mr. Nolan provided the figure that five people will die today in a hospice, several people will die today at home who are part of the specialist palliative care team and are being supported by the home care team at home. All three levels of palliative care I described need to co-exist and be organised for it to be done properly. There should be much fewer people dying in acute hospitals than is the case, but that will not happen unless we put the structure in place in the community or at home.

Advanced care planning might help a lot to inform progress in the area of residential care centres. The consultation does not take place when a person is near death or dying. It could take place today when a person is perfectly well, and the person is asked what kind of care they would like in the event of something happening to them. Professor Molloy devised Let Me Decide, which is a worldwide document that has been used along these lines. It is a tweaking of that booklet which is part of the pilot survey. The initial reaction from this pilot project is that relatives have not been shocked and horrified by the discussion and instead have welcomed it. Some might say they do not wish to talk about it at all, but many appreciated doing so.

A reference was made to Leas Cross. Without doubt Leas Cross scared the living daylights out of people in many places, because owners felt that if anyone died in their facility, there might be a Leas Cross type inquiry. HIQA standards for residential care specify there need to be end-of-life care discussions with all residents, so that one has a sense of what should be done in the circumstance.

Senator van Turnhout spoke about 80 year olds who are perfectly fit and well, and she is speaking to the converted in that respect. The majority are well. A figure was bandied about, which is correct, that 25% of those over the age of 85 get dementia, but that means 75% of people over the age of 85 do not get dementia, and many of the 25% who get dementia retain capacity. I might think Jack Lynch is still Taoiseach because I am from Cork, but that does not necessarily mean I lack intellectual capacity to decide-----

Jerry Buttimer (Cork South Central, Fine Gael)
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We can assure you he is not.

Professor Cillian Twomey:

I am very grateful for that assurance, Chairman, because I still wondered. Some of the questions we ask about testing capacity are not very relevant. That comes together in the context of wills and testamentary capacity.

The issue of litigation is slightly outside this debate, but I agree that it could arise. In my view, collaborative practice mediation is an area of dealing with concerns that needs to be developed very strongly. These issues arise nearly always out of a communication deficit, and we should try to make ourselves more available for that. That is easily said but less easily delivered. In practice, I did rounds on three different wards every week, and at the end of each round I had a meeting with relatives, which is communicating. I was conscious of the importance and I explained things in plain language and so on. However, I got into the habit after a while of asking the person to whom I was talking if he or she could provide a synopsis of what he or she thought I had said. Sometimes I would be horrified as I thought I had not said that at all. That is bad enough, but then I would meet that person's sister next week and ask the same question, and then I would hear a different version of events. People do not hear half of what we say when we first meet them, and perhaps they do not understand half of what they have heard. That means we need to meet them repeatedly. That is time consuming but worthy of practice.

Ms Joan Kelly:

I thank committee members for their comments on the medical card issue. We will keep a close eye on that. The issue of "do not resuscitate" and resuscitation in general is an issue for us in the Irish Cancer Society and for our nurses. We provide end-of-life care and, of the 2,600 patients we have looked after in the past year, pretty much all of them died at home and without resuscitation, I am glad to say. Clarification on that issue would be enormously helpful for us. It can be a grey issue, although it generally is not and any clarifications on that would be most welcome.

Mr. Bryan Nolan:

A question before the vote was directed to me about the need for education. There is a substantial need for education in the health service. Years ago people had natural skills about how to deal with end-of-life issues, because their relations all died at home and neighbours came in and laid them out and so on. I have met fully qualified staff nurses who have never even seen a person die or never even seen a dead person, so we cannot assume the people looking after the dying person know what is appropriate and what happens next. We would say that everybody needs some education. There are some who need more and then a small group of people probably need everything.

I would like to provide an example of how important the Final Journeys programme can be. Sometimes care is being delivered within a space. We do not even recognise who is delivering that care. In one Dublin teaching hospital, we took a group of staff who were working in a particular area - from the doctor down to the tea lady - and we asked them when end-of-life care begins. The clinicians all said it begins at diagnosis, and that when a person gets a bad diagnosis, we start caring for him or her in an end-of-life care way. We started drilling down through that idea. The next thing was that a little voice uttered: "I think that when she stops taking her tea, there is a change."

Everybody looked at this person, the tea lady. I asked her what she meant. She told me, "There was a lady here recently and when I brought her the tea she told me to go away with the small cup. She had a mug and she asked me to fill it. I got on with her really well and over time we had a great relationship. I knew the day I went into her and she told me she was done with the tea that there was a change. Very quickly the lady became unconscious. I used to keep an eye out for when there would be a slice of melon available. I knew she had a fierce sweet tooth and I used to nip into her when I could and rub her lips with the melon, so she would have the sweetness and moistness of it."

It was as if she had landed from Mars. There was complete silence in the room and everybody was looking at this person as if they had never seen her previously. That is the quality of care that is happening in her space. Where is that being valued? Where is it being captured? Who is saying, "If you are dying on our ward, this is the quality of care you can expect from our service"? Very often the people who have the deepest relationships with patients are invisible. They are passing in front of us every day and we do not even see them. Final Journeys is a wonderful educational opportunity to get people to take a helicopter view of their practice and to see who is providing care, because it is not just me, it is all of us. When we work together to provide a service, and use all the information we have about the patient and pool it, the only way is up. The patient will get a five star service.

In terms of the health care service, everybody in health care must have education, but outside in primary care, to refer to Professor Twomey's point, GPs should be involved. We do a lot of work with long-stay settings, and people often end up on trolleys in accident and emergency departments because decisions have not been made. The staff are unable to engage with the residents at a time when they are able, to talk about their wishes and preferences. We are making these recommendations now, and the Health Information and Quality Authority is saying everybody should have these conversations, but unless we educate and support staff for having these conversations, they will never happen. In approximately 80% of the admission documentation of the nursing homes I visit, the back page deals with spiritual care or end-of-life care. There is a line through it, "Not discussed at this time". How could one talk about end-of-life when somebody has been admitted to long-term care, to their new home? When does one talk about it? We need to support staff in their awareness of how to have these conversations, because they are difficult conversations.

There was a question about making staff confident and comfortable with end-of-life care, and where the patient comes in to all of that. If we are patient-centred and patient-directed, we could ask the person what is most important to them. Professor Twomey had a couple of wonderful questions earlier. One could even ask, "What do I need to know about you as a person that will help me to take the best possible care of you?" and "What are you most concerned about at present?". The GP could be helped to ask, when he is having his consultation with the patient long before there is any crisis or threat of illness or going into long-term care, "If you ever became seriously unwell, have you ever thought about what you might want? Have you any worries, wishes or concerns about how you might like to be cared for in the future if you became unwell? What do I need to know so I can help you with it?". We do not have these conversations, so decisions are made in crisis and we end up asking the family what they want us to do. With the best of intentions they want the best done for their mother or father so they ask that the parent be put in the ambulance and sent to the acute hospital. The poor patient ends up dying on a trolley, surrounded by strangers in an accident and emergency department, as was so well described earlier by my colleague. The way to get around that is to ask the patient.

Senator Burke referred to the legal issues. One thing struck me when he spoke about supporting staff. He mentioned the ambulance staff arriving when somebody has died and the need to do something. Whose need is it? Whose concern is it? Whose needs are being met in that space? Is it my need, as the clinician, health care assistant, nurse or doctor, to be seen to do something or is it what the person would want for themselves or is it the most appropriate thing? Sometimes, it is our need to do the task, because if I am doing a task I can prove I am of use. Sometimes, however, there is nothing more required than to say, "I am sorry that your mother has died".

Dr. Deirdre Madden:

Deputy McLellan asked about the capacity laws. The capacity laws in Ireland are inadequate. They are also offensive. The current capacity law is based on the lunacy regulations from the 19th century and obviously the language of those regulations is very offensive. I was happy to see the recent publication of the assisted decision making Bill, the theme of which is the promotion of autonomy. I like that it clarifies what people working in this area know already, that there is a presumption of capacity. It clarifies in law that this is the case. One starts from the basis that everybody has the capacity to make their own decisions. That is very important. It also ensures Ireland is compliant with the UN Convention on the Rights of Persons with Disabilities. It provides a suite of decision-making options to facilitate the patient's autonomy, while recognising that he or she might need support or assistance or a surrogate decision maker, if necessary.

Two other aspects of the Bill that are very important are the advanced health care directives, to give support to the legal recognition of those, and the extension of the power of attorney laws to health care. Both of those will add to the options that are available to try to facilitate autonomy as much as possible.

I am delighted Senator van Turnhout picked up on the patient as expert. That is very important. She spoke about consent as being choice and control. It is also about capacity and knowledge. We can only exercise that choice and control if we, as patients, are informed. Consent and communication are obviously a process, not a once-off thing. Professor Twomey spoke about the difficulty for clinicians in giving information, asking the patient to say what they have learned or appreciated from the discussion and having them tell one something completely different. That is always a difficulty. There are language and communication difficulties, but these can be circumvented. One can have visual aids, such as pictorial representations of what one is trying to explain. There are many different ways in which one can aid that communication, but it is a process and skills are very important in that.

Senator Burke mentioned two matters in response to what I said. The first related to the do-not-resuscitate position. Bryan Nolan referred to this as well, the expectation of relatives that something should be done. As with all clinical decisions, the welfare of the patient must be first and foremost. It is important we do not allow unethical or inappropriate practices to take precedence, such as slow coding or sham resuscitation, where there is a pretence for the family's sake of providing resuscitation. In my view, that is unethical and inappropriate. The Senator also spoke about the difficulty for staff who are caught in the middle when there is a difficulty with the family. Again, why is there always a tendency to defer to the family, regardless of whether they have been heavily involved in the care of the patient, as opposed to the patient? The staff might have concerns about capacity, which I have mentioned, and there might be legal confusion. They might feel the next-of-kin has some type of legal authority, which they do not. They also do not wish to have confrontation, which is perfectly understandable. They need to have personal strength of commitment to put the patient first. It is all about communication.

Ms Margaret Naughton:

A question was posed to me about bereavement. Relationship is at the heart of chaplaincy. It is about having the time to build up a relationship with a person, to get a sense of who they are, what their story is, what their pains and struggles have been, helping them to find meaning in their past life and helping them to find meaning in their new reality, which can often be the end of their life journey. If we are reduced to a simple meet and greet service, we do not have the time to build up that pastoral relationship with the person.

If we just come in and say, "Hello, how are you?", and move to the next patient we cannot get any sense of who the person is. Obviously, at the end-of-life stage the person may not have been given any opportunity to work through all the things that are still in his or her heart - regrets, difficulties, etc. Nobody knows what difficulties another person may be carrying within.

To move beyond the person, there is the family who will be left to carry the struggle and the pain of bereavement. If I have not had time to build up a relationship with the family as chaplain, I do not know who they are and I cannot be there to support them. That is one huge challenge. If there is an increase in structures for more chaplains, more time and the single room to be with the family while the person is dying, that all adds to building up the relationship where the family can know who the chaplain is.

I have had many experiences of being present with a person who has died. As late as last week, I had a situation where a woman died, more or less suddenly, and I was called. Her husband said I was the person who used to come and with whom the family used to have all the chats and the conversations in the room when the man's wife was very unwell. We had the opportunity to build up that relationship. We all say that the patient is central. That is correct, but we sometimes forget about the family who are left to carry the bereavement at the end.

Jerry Buttimer (Cork South Central, Fine Gael)
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In regard to the issue around pastoral care and the CPE programme and, in particular in Cork University Hospital where there was a question mark about it continuing, is that programme still ongoing?

Ms Margaret Naughton:

I trained in Cork University Hospital. The programme has been reduced significantly. As far as I am aware, it is offering just one unit per year whereas there used to be three units. It is on a yearly basis now. Therefore, there is much questioning and huge doubt. If chaplains are not trained, the service will not continue.

Jerry Buttimer (Cork South Central, Fine Gael)
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Where are the other training venues?

Ms Margaret Naughton:

They are in Dublin at St. Vincent's Hospital, the Mater Hospital and St. John of God Hospital, which I think provides a unit. That is making CPE training Dublin-centred. For people who are outside Dublin, it is not possible to come for training.

Jerry Buttimer (Cork South Central, Fine Gael)
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In her presentation Ms Naughton mentioned the moratorium in the context of chaplaincy. Is there a big turnover in chaplains?

Ms Margaret Naughton:

In what sense?

Jerry Buttimer (Cork South Central, Fine Gael)
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In terms of personnel changing, retiring or leaving.

Ms Margaret Naughton:

By their nature, chaplains are in the older age category. When chaplains retire, by and large they are not being replaced.

Jerry Buttimer (Cork South Central, Fine Gael)
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I apologise for dwelling on this. Where does chaplaincy fit in the private hospitals?

Ms Margaret Naughton:

It depends on their budgets as everything is down to money at the end of the day. Obviously they are also constrained by budgetary matters.

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

Dr. Geoff King:

The general issues resonate elsewhere. I would make two points. The legal requirements needing to be changed will change with initiatives 1 and 2. There are some advantages to coming last. We are the only regulator in the world that registered three levels of professional: EMT paramedics, advanced paramedics and UK-registered paramedics. Other places do not do that. We have had the tight regulations and the laws changed. Practitioners in Ireland must practise at the sharp end. They need to be working for an organisation approved by us, whether it is private, voluntary or statutory, they need to be registered on our register, and they need to be acting under our guidelines and under the medicines regulation. That is a triple-lock mechanism that no one else has. In terms of the sharp end, we are getting there. Do we have enough? We want more but we are getting there. I am very happy with the sharp end.

On the nuances, the professional always makes the decision. I remember when I had just graduated I was told by the hospital that there was a ship at sea and they needed someone to go out to treat a person who had had a heart attack. We found out that a team of sailors had been resuscitating the person. It was somebody who was cold. We did not tell them that what they had done was stupid. We told them that we thought he had passed. We did 20 minutes resuscitation and we finished. If that is done professionally, discretion is used and there is good training, that will happen. The bigger risk to me is if someone is doing that because they are scared of litigation whereas the employee should be scared of litigation if somebody is 40 years old and healthy and could survive and one has one's people deployed on a cold body. That is where the litigation would be.

That aside, I would not be genuine if I did not say that those are the two biggest issues for me at the sharp end. We are even setting up a retrieval service and the HSE has asked me to lead on that. We have a neonatal service that everyone knows brings in sick patients. Every other country has had these wall to wall for ten to 15 years, but we will be going 24-7 with neonatal and probably before the end of the year. We also have money to establish these for adults in Cork and Galway, seven days a week daytime, and in Dublin. We are also setting it up in paediatrics. Before long, not only are we getting the pre-hospital sharp end, we are getting the in-hospital process.

There is too much discussion about response times. The ones in the law are flawed and meaningless. The biggest risk to patients currently, and we have only snapshot data, is what happens between hospitals.

The second point is that this country's system is logjammed. If one goes to any hospital in the country - Dublin or elsewhere - one has the wrong patients in the wrong places and they cannot move. There are people in one hospital who need to be in another because they cannot be looked after in the hospital they are in. They miss the window. When they are being transported, they are at greater risk of a bad outcome and dying than those in the community making a 999 call. That is where I see the risk. That is in the mix for consideration under the service plan. It was in the mix last year. The bid to support it did not get up.We are not talking about the sharp end. We want EMTs with only four to six weeks training. It is a low level of staff cost and a low level of ambulance cost. In terms of this year, if it does not come out now, if we do not get them this year, I will be thinking that next year the same thing will happen. Everybody will be logjammed. The system will be stuck. I am very nervous about how it will come out in the process this year, but I will be around every year from here and the issue of providing a sufficient number of ambulances will be constantly to the forefront until it is fixed.

We have a legacy where the thinking was that if someone was in a hospital they were safe and that if they were in the community and they ring 999, they were not safe but the opposite is the case. If someone is in a hospital or between hospitals, in my view they are at greatest risk. In terms of the system here, I agree with every bit of the reconfiguration of acute services, including the grouping of places and linking those. Every bit of it is sound, but if the ambulances are not put in to do it, it cannot be unlocked and these people will not end up where they need to be. If the members visit any hospital - Letterkenny, Monaghan, which I have visited, and down to the Beara Peninsula - everyone will tell them they have somebody who needs to be in another hospital because if he is not, he will not get his pPCI and will instead get open surgery or medication. They are out of their depth where this person is concerned but the right hospital does not have a bed while there is a person in the right hospital which the original hospital wants back. It is logjammed. That will be the case every year until it is fixed. It would be disingenuous of me if I said otherwise.

My priorities and what we are working on are the two issues to which I referred. They do not need a change in the law. They just need consensus, we will get there, and the committee members can help. Until the other issue is resourced, that is it.

Jerry Buttimer (Cork South Central, Fine Gael)
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I call Professor Patrick Plunkett.

Professor Patrick Plunkett:

I do not know where to start. Deputy Sandra McLellan asked about pain relief and the key challenges. Is down to the usual. It is knowledge, attitudes and skills among staff. There are small groups of people who have great knowledge and skills and the right attitude, while the vast bulk of people do not have adequate knowledge or skills. That said, above all there is an attitudinal element which we can address much more effectively, certainly in the emergency departments, that it is the patient's pain. It is not one's own pain on which one must decide whether one is giving enough or not enough or one must not give any more. One must interface with the patient who will say when they have enough. There are problems with complexity of dosing, particularly with patients who are on multiple medications nowadays. There is always concern for toxicity.

People bring up the issue about concern for dependence on such medication, however if it is end-of-life care, dependence is hardly an issue. We need to get the issues related to pain relief sorted.

In regard to the reluctance to allow people to die in nursing homes, and my comments on Leas Cross, HIQA and the standards, if we could apply the standards adequately in the nursing homes, then I do not think we would have a problem. Again it is an attitude and knowledge issue. It is people running scared. People are frightened that they will be the people hung out to dry if they let the person, who is known to be dying, die from another issue such as an urinary tract infection. I think a great deal of work needs to be done to change those attitude. It needs a lot of support from both clinicians, support groups and HIQA.

Senator van Turnhout did not realise that the legal basis of "Do not attempt resuscitation", DNAR orders was not clear. Senator Colm Burke commented on the fear of litigation by litigious relatives. There are certainly issues in this regard but we must stand on our professionalism. Dr. Madden came up with this issue, if I am not mistaken, about family versus the competent adult and conflict in instructions. I have long held the position that if I am unable to communicate adequately with the patient or rather that he or she is unable to communicate adequately with me, my role legally and morally is to advocate on behalf of that patient. I do not have a role to advocate on behalf of the relatives. The relatives do not have the decision making capacity in general, virtually in every case they have no decision making capacity for a patient who cannot communicate. What I do is make it very clear to the relatives that I am interested and need to know what they think the patient's view would be, not their view, and I make it very clear to them that this is not their decision to make on whether to resuscitate, that it is my decision. I will make that decision and I will relieve them of that burden. I will not allow conflict to arise between members of the family because otherwise it may. The level of relief that brings to families is unbelievable because suddenly this burden has been taken away from them. They know they do not have the knowledge and skills to make those decisions and now they know they do not have the responsibility to make them either.

I think we must remember that all we are doing in resuscitation - I am coming away slightly from end-of-life care in one sense - is that we are postponing premature death. Death at the appropriate time should not be postponed any longer. It is appropriate. Coming back to Senator Colm Burke's issue about advanced paramedics arriving, two issue arise, one cannot force engagement in a futile resuscitation. That is immoral at the very least. The mechanism that the Pre-Hospital Emergency Care Council, PHECC has developed in clinical practice guidelines is that we work with machines which can tell us that it is futile to continue resuscitation. It is not simply an opinion plucked out of the air, it has a sound, solid scientific basis as well as everything else. It is vitally important that we ensure that control at all times, up to the point where it is no longer possible, remains with the patient. It is their illness, their life and death. Our role is as an assistant in that. We are there to advise and to assist people through their life. Ultimately we are all going on the same journey and perhaps we will end up in a similar place.

Ms Kate Bree:

There was no obvious question directed at me. I thank members for that. It is very evident this morning that a common theme is running through our presentations. I think it is the recognition that staff are our greatest resource and that we need to invest in them. There is high expectations of our staff in very challenging and demanding environments. We really must invest in our staff. Some of the challenges we are faced with is to try to get staff released for 20 minutes, 30 minutes or one hour in our busy clinical environment.

In regard to investing in the training of staff, that is a key priority but we have to look at some of the statistics that came out in the end-of-life audit, where some 56% of staff were distressed or troubled after their experience and exposure of dealing with families and dying patients. We do very little to support our staff. That is an issue that needs to be looked at as part of a national bereavement strategy. Senator Colm Burke referred to death happening in areas where that does not normally happen. When one is in an acute medical area, where there would be high numbers of deaths every week and sometimes very difficult scenarios, it is very difficult for staff to keep continuing. That must be acknowledged. We need to mind our staff because they are our resource and none of this will happen unless we invest in them as well as mind them. As no specific question was addressed to me, these are my general comments.

Jerry Buttimer (Cork South Central, Fine Gael)
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Thank you Ms Breen. I draw the attention of members to the comments by the actor Gabriel Byrne to Simon Carswell in The Irish Times of 13 November. Perhaps he was resonating the points made by Professor Plunkett's today. Telepathy is good.

I thank all the witnesses. Over the past number of weeks we have had six sessions to look at the end-of-life care in Ireland and what can be done to ensure that people of all ages can end his or her life in a way that is dignified. We have heard from a wide range of experts, including academics, practitioners, policy makers, advocates, service provides and charitable groups. All who appeared before this committee shared their experience with us and gave us an insight into the reality of death, the humanity in our society and also the inevitable outcome that awaits us all.

At the outset of these hearings I made the comment that we have a long tradition of dealing sympathetically and respectfully with end-of-life care and bereavement. I hope these hearing in the past number of weeks have shown the importance of that caring and respectful approach. While we have a great deal more to do, it highlights the need for the same approach to be reflected in health policy so that the health services can provide that type of end-of-life care.

Both Professors Plunkett and Twomey outlined how people die, that 25% of all deaths occur at home, the focus on hospice care, the issue of long-term residential facilities and acute hospitals. They underlined the multiplicity of places in which death occurs. However the issue that does not get noticed in public health policy is that death is a reality for all sectors in the health system, no matter what part. It is not just confined to one section. It is important that a comprehensive policy of end-of-life care be developed in which we reflect the totality of the health system and make it workable across all sectors of the health service.

One of the key points I learned from our witnesses is that providing quality and respectful end-of-life care is not just about money and resources but about care, consideration and communication, the expression of the human element and taking time to talk to people. It is very often, as has been borne out strongly today, an issue of a respectful environment for the patient, in which he or she can have conversations, say goodbyes and provide space and support for loved ones and families to grieve in the immediate aftermath of the death. As a young clerical student who spent five years studying theology I worked with Dr. Twomey in the then Cork regional hospital and now Cork University Hospital.

I do not want to be too personal. While watching him doing his ward rounds when I was a young student, I was always struck by Professor Twomey’s generosity of spirit. Even though he has retired, he is still involved with Marymount University Hospice. I did not say it at the beginning, so I will say it now. He left a legacy that stuck with me. He spoke about patients and families. I was struck by Dr. King’s reference to a body being stiff and cold. That was the one factor that resonated with me as a porter at the hospital, because the body in question was a person.

I compliment Professor Twomey on his great work in the hospital. I learned a great deal in that hospital by watching his humanity and that of his colleagues. We have heard about the whole-of-staff approach. It is impressive.

Our meetings form an important component. We must deliver a policy based on written submissions and oral hearings. We will report to the Dáil and the Government on end-of-life care. We have undertaken a positive body of work. I thank members for their co-operation, interest and vision in having this as part of our work programme for this calendar year. I thank all of the witnesses and organisations that generously gave of their time to share with the committee their invaluable experience of and insight into end-of-life care. If I may single out one person, it would be Ms Angela Edghill for the support she gave Paul, Niamh, Luke and me in co-ordinating these hearings.

This is just the end of one part of the process. The committee will discuss and publish its report and, it is hoped, have it discussed in the Dáil, leading to further work.

Jillian van Turnhout (Independent)
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And the Seanad.

Jerry Buttimer (Cork South Central, Fine Gael)
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Yes. I apologise. The Senators are still here, thankfully.

Jillian van Turnhout (Independent)
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We are. The people have given us a mandate.

Jerry Buttimer (Cork South Central, Fine Gael)
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Members of the Seanad play a pivotal role in our committee. Speaking of the Seanad, I remind Members of both Houses – I am sure that Senator van Turnhout has done this - that today is the last day for the submission of questions for our quarterly meeting with the Minister for Children and Youth Affairs.

Jillian van Turnhout (Independent)
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They are in process.

Jerry Buttimer (Cork South Central, Fine Gael)
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Good. I also remind members that we will meet next Tuesday at 5.15 p.m. with Dr. Geoffrey Shannon. The report has been circulated to members. If not, it will be done today. I will revert to members regarding the change in the schedule of the other meetings.