Oireachtas Joint and Select Committees
Wednesday, 16 July 2014
Joint Oireachtas Committee on Public Service Oversight and Petitions
Report on “A Good Death”: Office of the Ombudsman
The committee is sitting in its capacity as the joint sub-committee on the Ombudsman to consider the report of the Office of the Ombudsman on “A Good Death”. I remind all those present to put their mobile phones to safe mode or switch them off entirely as they interfere with the sound recording system.
I apologise to the Ombudsman and the director general from that office for the delay. We had matters that were important to resolve before the summer recess. I am pleased to welcome Mr. Peter Tyndall, Ombudsman, to present the report. I also welcome Ms Bernie McNally, director general, from the Office of the Ombudsman. I thank them for forwarding their presentation which has been circulated, as has the report itself.
By virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of the evidence they are to give this committee. If they are directed by the committee to cease giving evidence in relation to a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any persons or entity by name or in such a way as to make him, her or it identifiable.
I invite the Ombudsman to make his presentation.
Mr. Peter Tyndall:
Members have had an opportunity to see what I was going to say and I am conscious that they have had a busier day than they expected. I will make some brief introductory remarks after which we can get into discussion.
The Office of the Ombudsman has two jobs. One is to investigate complaints and to try to find redress for individuals. The other is to try to promote improvement in public services. This report fits very much into the latter. It was not a report designed to hold individual hospitals to account. It is a report produced in conjunction with the Irish Hospice Foundation to try to highlight ways in which services for people at the end of their lives could be improved in our public hospitals and elsewhere in the health service.
The report tries to do that by deriving its power from the stories of the people who came to us either with their complaints or their loved ones who came to us to complain on their behalf. It is intended, if one likes, to try to promote better services in the future for people who are reaching the end of their lives and put forward some simple propositions as to how services could be improved. Although there are many themes, the single biggest theme that comes across is the importance of good communication so that patients and their family members understand what is going on. They need to understand the role of the clinicians and what is likely to happen. They need to get the support they need at what is a very difficult stage.
Fundamentally the report tries to illustrate the circumstances around a death being managed well - where people understand what is happening, where they have access to privacy which they need and where they have access to the support they need. One cannot get over the grief that is associated with a death, but we can ensure that people do not go on being troubled and upset by the nature of what happened around the process of dying. We cannot take away the grief, but we can make things as good as possible to ensure the person is comfortable, that they are without pain, that their loved ones are with them, that they have access to whatever support they might need by way of religious rights and that the whole process is handled with dignity.
That is all I want to say by way of introduction. The report and my comments stand for themselves.
I thank the Ombudsman and his office for producing this report, and I congratulate him on it. As he said, this is a somewhat unusual report for us. We spend a considerable amount of time talking about accountability and effectively trying to find someone to blame. It is quite refreshing to have a report that does not take that approach and rather assembles the stories and finds some common themes, as the Ombudsman has done very adequately. In Ireland, the area of death is one we are not great at and we are learning to be better at it.
The Irish Hospice Foundation does extraordinary work in its own right. I pay tribute to it and to Ms Angela Edgehill who is a terrific director. Having a programme on television was really useful and I am sure the Office of the Ombudsman got extraordinary feedback from that. The more we talk about the problems associated with death, the more likely we are to create an environment in hospitals where that becomes the expected thing and becomes a natural part of how we are without having to write out long recommendations. However, having said that, we need to put come protocols in place. I have read the report carefully. I am sure the Ombudsman is aware that the Joint Committee on Health and Children launched a report today, which is obviously very valuable. We are all singing from the same hymn sheet here, but the more often we talk about it and the more people we involve, the greater the possibility of broadening the reach of the message, which is very important.
Does the Ombudsman have a view on how to engineer a change in hospitals? One of the recommendations in the other report was to have a person who is responsible. It takes much more than just having a person, does it not? The Office of the Ombudsman has the opportunity to look closely at all those stories that people sent in, many of them very painful. They opened up their hearts, albeit they did not start out thinking they would end up in a report such as this. I am sure they are very grateful that this is what happened.
What does the Ombudsman believe can be done? While I have commended the publication of the report, I am concerned that because it does not point fingers and highlight what is wrong, it may have the capacity to gather dust. When I wrote to the Chairman asking for the Ombudsman to be invited to appear before the committee, I believe I used that expression - I certainly did so when talking on radio about it. I do not want that to happen. Given the painful experiences people have shared with the Office of the Ombudsman, I do not want people to say, "That was a good idea, but we could not take it further". It is a challenge for the Office of the Ombudsman and for us as a committee to know how we can help to be part of the process.
We are making a start by engaging in the discussion. As the Ombudsman sees it, what steps should be taken by members and his office to keep the momentum going? I have a particular concern about the guidelines on resuscitation. The request not to resuscitate clearly presents a very complex issue. Partners' and families' rights and so on also present very difficult issues. It is a particular issue that could cause many difficulties and clearly has.
Mr. Peter Tyndall:
The Senator is fundamentally correct, there is little point in producing reports of this kind unless there is a follow through and that the recommendations are implemented. From my perspective, leadership at a clinical and an administrative level within the health services is where the fundamental change needs to happen. It needs to happen in a way that attends to the culture on individual wards in hospitals. There are issues about physical infrastructure that can be put in place in order that people have a separate space in the time leading up to the death and also to be with their loved one after death. There are elements which can be put in place and one can recommend that every acute hospital put them in place, but more of these elements relate to the culture of care on the ward and the way clinicians are trained in the initial training and also as they go forward. The advantage of the hospice friendly hospital programme being in place is that one can point to a template for how to things well. The report should lend impetus to that piece of work, on which we will continue to work with the Irish Hospice Foundation. I too commend it for its work on this issue and also for the work it has done, as the Senator says, to bring the issue to the attention of many more individuals, clinicians and managers. Hospitals need to have a strategy in place on how they deal with end of life cases. In terms of a follow-up, we have in a sense commended a template to it. We have put forward examples of how not to do things, but we can see what complaints are coming in and look at whether hospitals are implementing best practice set out both in this report and the report of the Joint Committee on Health and Children and the work of the Irish Hospice Foundation.
There is a strange ambiguity about Irish attitudes to death. The traditions around it made it much more real and personal. The majority of people now die in hospital and the numbers are striking. Each day 35 people die in an acute hospital in Ireland and this, in a sense, has moved it out of communities and away from people's experience to something that happens elsewhere. It is particularly important that it be dealt with well. In that sense, we will continue to work with the Irish Hospice Foundation. We will also work with the HSE to ensure it is driving the issue forward. We will support the recommendations that there be a strategy and an individual responsible for the strategy in place in each acute hospital setting. We will then monitor change through the number of complaints received. If we continue to receive complaints, that will give us much more leverage to actually say it is not good enough and that the hospital should have been implementing the findings and that we want it to do so as a consequence of the investigation or examination we have undertaken.
Obviously, when the Office of the Ombudsman received these complaints originally from individuals, was it correct to assume they were reporting complaints to the Ombudsman in order that he would bring them to the hospitals, to those who were accountable? Will the Ombudsman explain the reason he chose to take the route of compiling a report, rather than going to X or Y hospital and telling it where it had gone wrong and what it should have done?
Mr. Peter Tyndall:
In each of the complaints we would have taken it through to a conclusion which would have involved specific recommendations. Because they were generally dealt with at examination stage, the recommendations would have been agreed to. This was not instead of giving individuals the redress they wanted, but very many of them came to the office, saying their primary motivation was to ensure that what they had experienced would not be experienced by anyone else. In a sense, what we have done is deal with the second stage; we have not just resolved the issue with the individual hospital but also tried to drive the learning more widely across health services.
Cuirim fáilte roimh na finnéithe. Táimid an-bhuíoch gur tháinig siad isteach. I thank the Office of the Ombudsman for the report. It is interesting for members to come at it from a different angle. Is Mr. Tyndall telling us that, in one sense, the report is a benchmark and that the Office of the Ombudsman is laying down the baseline for future data that will be the benchmark the office will use in measuring improvements in this area?
Has there been a change in the trend of complaints when one looks at complaints made a number of years back, or has it been similar? Is there any sense that part of the problem is that clinicians and staff are under such pressure that the way in which they handle an issue is not intentional but the result of not having thought things through and that if they had more space and time, they could do this?
Mr. Tyndall referred to 35 people a day dying in acute hospitals. Is that an increasing trend in the past couple of years? How many complaints point to a lack of services to allow people to die in peace at home with the support of their loved ones? Have cultural issue comes into play? I have been at a number of funerals in the past year or so, one of which was the funeral of an African child and I was quite taken by the difference in the way that they mourned their children. It was a very sad ceremony and very different from the traditional Irish wake. I am aware also that the Muslim community has a very different way of dealing with death. Perhaps as a nation we have been slow to take on these cultural differences.
The Office of the Ombudsman has instigated a report on a good death. Is Mr. Tyndall thinking of producing similar reports on issues about which he has received a number of complaints on a theme? We have mentioned the issue of direct provision accommodaton and prison services which are not necessarily under the ambit of the Ombudsman; therefore, he cannot conduct a specific investigation, but would he consider producing a similar report because there has been a series of similar complaints?
Mr. Peter Tyndall:
There are a great many question and I will let Ms McNally answer some of them.
I thank the Senator for his range of questions, some of which point to the way forward. There is no question but that we will be producing more themed reports. It is a good way of generalising what has been learned. It sits alongside the casebook, the first of which is due to be brought out in the autumn. The question is how do we ensure we do not keep repeating the same mistakes. There is no question in my mind that staff in the health service are working under extreme pressure. People will say they are struggling to find time to do the job well. That said, the issues around palliative care and so are non-negotiable. Should people be in pain because staff are too busy? Should they not have access to adequate food and water? Should they not be treated with dignity and respect?
Ultimately, it is for me as Ombudsman to say that regardless of whether these things were caused - as they may have been in a small number of instances - by resource pressures, much of the time they are caused by the failure of leadership to create positive cultures around care. I will continue to highlight them. In a sense, there is a line over which one must not stray. Whether an issue arises because of resource pressures, individual failure of leadership and management or a failure of training it is still for me to highlight it. Ms McNally will speak to the committee about trends and compliance.
Ms Bernie McNally:
The Ombudsman has spoken publicly in the past few months about his concern around the low level of complaints about care in this country. Approximately 10% of the complaints received by the office relate to health and social care. While many of the complaints received relate to the HSE, they related more to monetary than other matters. That 10% compares with 50% in other jurisdictions such as Wales. As such, the number of complaints received in this regard is small. A large percentage of those complaints down through the years would have related to end of life care. While only a relatively small number of complaints are received the fact that the same complaint continues to be made highlights that this is a constant issue.
In regard to the question about numbers, the Irish Hospice Foundation is the most appropriate organisation to answer them. The statistic of 35, or 43%, of people dying every day in hospital arises from the Irish Hospice Foundation's audit of end of life care. I understand there is an intention to repeat that audit.
On whether it is our intention to do similar reports, as stated by the Ombudsman as this issue had been a regular theme over a number of years it was dear to his heart that this report be done first. There are other themes emerging which the Ombudsman is committed to examining. Obviously, we have limited resources and as such we cannot do everything at once. We would hope to undertake a number of similar reports in the next couple of years.
Mr. Peter Tyndall:
On the support of the office for people dying at home and the provision of services in that regard - most people would if they could choose to die at home - we are very supportive of initiatives of this type. However, resources are an issue. It is possible to deliver good palliative and nursing care to people in their own homes but this requires services which are sufficiently well resourced. There are excellent examples of this but there needs to be more.
Mr. Peter Tyndall:
I want particularly to comment on the issue of direct provision and will comment later on the cultural diversity issue. I am on record as saying, as is my predecessor, that some of the most vulnerable people in our communities do not have access to proper independent redress. This must be a matter of concern for this committee and people in general. I believe this needs to change and I will continue to make the case for change in this area. Where people are denied their rights because they are not citizens of a particular country and are, because of this, living in circumstances over which they have very little influence, this is where the demand for independent redress should be highest. It is unusual across Europe for people in these circumstances not to have access to the national ombudsman. I do not believe that is right and it should change. My views on that are unambiguous.
On cultural diversity, I am conscious of the issues around cultural diversity, including the different traditions of dealing with death in terms of mourning, burial and so on. This has not featured particularly in the complaints to my office. However, it is an issue we would be alert to. The complaints we receive relate more to the increased numbers of people dying in hospital as to opposed to elsewhere. One of the most remarked upon features of hospitals is the age profile of their populations. Very high proportions of people in hospital are in their eighties and increasing proportions of people in hospitals have dementia and other conditions associated with ageing. A consequence of this is that the demands placed on clinical and nursing staff in particular are very different from what they were in the past. I am not convinced that in producing our nursing and clinical staff for the future we have reflected the changes in the nature of the job they will be asked to do in our acute hospitals. I intend to have conversations around this with the bodies responsible for clinical staff in the health service. It is important I have conversations with them as a matter of course but these are areas I will want to explore with them.
In a sense, this report also gives me the basis for a conversation with those who are committed to producing our future doctors and nurses around the issues that need to feature more in training than was necessarily the case in the past.
Ms Bernie McNally:
The Ombudsman referred to medical schools and so on. This report has been circulated to medical and nursing schools. We want to maximise learning from the report. The Ombudsman has spoken at events for student and qualified nurses. I recall that at one such event a nurse stood up and said in relation to a story which the Ombudsman told that it had made the hair stand up on the back of her neck. It is the power of the story versus a piece of theory or a standard. We would hope that schools and hospitals will use some of the stories in this report to make the hair stand up on the back of the neck of staff and thus make them aware of how easily things can go wrong and the effort that is required to provide a really good, dignified service at the end of life.
Mr. Peter Tyndall:
Where hospitals and other providers bring people who have been complainants into their training process, such that clinicians are exposed not to theoretical issues or the views of ombudsmen but the experiences of patients and families, this is extraordinarily powerful in bringing about change. It confronts people with the consequences of their practice. People do not set out to provide a poor service. Often what happens is the result of staff being busy and under pressure. To some extent, to provide this type of service day-in and day-out one has to detach oneself from emotion. It is helpful, therefore, to remind people from time to time about how patients and their families feel about what is happening. The more we can encourage this, the better.
The issue of private versus public hospitals was raised. During a previous interaction between the committee and the Ombudsman, he raised with us the need to ensure that all public services, whether delivered by a private or public company, come under the jurisdiction of the Ombudsman, which is an issue that arises not only in Ireland but throughout Europe. It is an issue on which the committee would like to work further in the autumn with the Ombudsman. It is a key issue. I commend the Ombudsman on his endeavours in that respect.
I congratulate the Ombudsman on this report. I hope it will have the intended effect of bringing about a guaranteed minimum service or standard.
Ms McNally raised the point of why there are not many complaints. Some of this relates to the Irish approach to death, as has been noted, and if somebody dies, people may not want to resurrect issues surrounding the death or dwell on the matter so they move on. I have found that people often do not want to make a complaint because they do not want an incident to reflect badly on other staff. A person may wish to complain about nurses on a night shift or a doctor but could feel the complaint would reflect on the entire team helping a loved one. There may be a case for family meetings to be held within a very short timeframe. I have experienced every part of the hospital service in the past year so I could tell the committee much more than some of the doctors in hospitals near me.
I have been made aware that sometimes there is a failure by the hospital - although it may not be the hospital's fault - to share information with a family because the person being treated wants to put on a brave face and will not allow medical staff to share the issues with the family. They may say they are not doing badly or they are not in pain. They may not want help. That can lead to conflict as an adult is entitled to privacy and information. If somebody is to care for a person at home and take on that responsibility, I do not know how we can get to grips with conflicts that can arise, as the carers should be entitled to information as well. If a patient, whether it is a mother or brother, is going home, a carer must be informed as to whether he or she could be violent, for example, or wake in the night screaming. One would not be aware of such behaviour if one is just visiting a patient in hospital for an hour or 30 minutes. A person making arrangements for home care may not know the consequences of particular medication or bouts of lucidity mixed with anger. We must consider how physicians and nursing staff can share information in such scenarios so a family taking on care in the last weeks or months of a person's life can understand the full consequences of what is being taken on.
It is good that we are talking about this issue and moving in a specific direction. It may make it easier for patients in future to avoid just putting on a brave face and asking to be brought home.
Mr. Peter Tyndall:
Some of the most touching cases involve people who did nothing wrong in a sense but where patients did not want families to know how ill they were. Families in such cases feel medical staff are keeping knowledge from them but, as the Deputy describes, the loved one has decided to do that. It is difficult because once a person is capable of making decisions, a doctor must respect it. That can make life very difficult.
Where a person is going home, there are issues about people preparing themselves to care for that loved one. The carer may not know the precise nature of the condition or the impact of medication, and these are difficult issues. Sometimes there is not a straightforward and right answer and the hope is people will feel a little more confident in allowing clinicians to share the requirements with family and some of the conversation around these issues. I again commend the Irish Hospice Foundation on the work it did with RTE on developing the programme. Perhaps we need to get better at speaking about these issues. I hope the contribution of our office will help the debate move forward and make people feel more comfortable. When there are happy family events on the horizon, one can understand people choosing to minimise the fact that their life is limited because of a fear of detracting from the happiness of family events. That is very understandable.
Ms Bernie McNally:
One of the case studies here highlighted the importance of the hospital engaging community services and alerting such services. If the hospital cannot say much to the family, it should at least ensure there is some support in the community, with a public health nurse or community psychiatric nurse calling out to see how things are going or offer support. After a few weeks there may be a greater willingness to share so those support services are important. There have been unfortunate episodes where the hospital forgot to send a referral letter, etc., so such issues are critical.
With regard to "do not resuscitate" decisions, do the witnesses believe there is a need to examine the guidelines or the legislation? The report indicates the families may not have understood the full implications of the term so is there more work to be done in the area?
Mr. Peter Tyndall:
There probably is as it is a very sensitive area. Ultimately, it should be a clinical decision and there should be full communication with the patient and the family if requested. It would be preferable for that to happen. People do not understand that it takes pressure from both the individual and the family if there is a realisation that the decision would be primarily clinical. There is the possibility that people would feel disengaged from the process as a consequence and there is a need to improve guidance. It is a difficult area and sometimes it is clear that to be involved in very invasive efforts to save a person's life is not appropriate when practically there is no prospect of extending the life or where quality of life would be significantly damaged by the condition and intervention. Explaining this to individuals and ensuring not only that guidance is right, but that communication is appropriate, can be challenging. There is more work to be done.
I may not have asked clearly enough about the "do not resuscitate" issue. The point was made that the need for a more rigorous or formal procedure could be highlighted in the making, recording and communicating of those decisions. The language used is slightly different. Has there been any feedback or has there been a response on the matter?
Ms Bernie McNally:
The "do not resuscitate" order has arisen in a number of complaints. With each of those hospitals we asked if there was a policy for such orders. Every hospital should have a policy which should be guided by a national standard. Every hospital's policy should take in what it means, the approach and who makes the decisions, etc. There should also be an information leaflet for families so they can not only be told what is involved, but read and reflect on the issue. Any of the hospitals with which we have engaged and agreed that this approach makes perfect sense and they are happy to do it. We understand that most hospitals at this stage have a procedure and information available to families and patients for consideration.
Our apologies for the delay in getting started, but we thank the Ombudsman and the director general for attending and we look forward to engaging with them. At our previous meeting, the Ombudsman raised a number of key priorities for his office. Our committee looks forward to advancing those with him in the autumn session.