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When Things Go Wrong - The Public Health Service and the Ombudsman: Accountability in Action (12.06.2007)

Address by Emily O'Reilly, Ombudsman and Information Commissioner at The Sunday Business Post Fourth National Healthcare Summit

Introduction

In his keynote address this morning, Professor Drumm singled out access, public confidence and staff pride as the ingredients for a world class health service. As we all know only too well, realising this vision will be no easy task. We are all familiar with the challenges of improving accessibility to public health and social services. First, there are the physical access problems in the shape of the heart-rending stories of patients on trolleys in accident and emergency units waiting for beds to become free. Then there are those others who must wait for months, if not years, for elective surgery because they do not have the fast-track option of private health insurance. And finally, there are others still, bemused, that in modern celtic-tiger Ireland, they now have to travel hundreds of miles to access specialist hospital services which traditionally were available in their own communities.

And then we have what I would regard as the most serious of all access problems. I refer to those unfortunate people - carers of one sort or another - unsung heroes and heroines - who are often forced to resort to the courts to vindicate the rights of their loved ones because of serious gaps in public health policy. How often do we feel a profound sense of guilt and frustration that we are parties to a public health system which often seems unresponsive to the needs of those who are unable to fend for themselves - a system which denies them and their families the opportunity to live their lives with basic human dignity? How often do we hear of parents whose lives have become totally consumed by the need to give 24/7 care and attention to their seriously and permanently ill children and who, in addition, spend all their waking hours trying to persuade and cajole the public health system to give them some relief from their daily plight?

I fully accept that resources are finite. I know, too, that hard cases make bad law. But I also know that we cannot continue to allow so many unfortunate cases to fall through the net. Professor Drumm is right - accessible public health services are a necessary prerequisite to a world class public health system. And I feel sure he would accept that a world-class public health system is only achievable if it is fully accountable for all aspects of its functions.

The Nature of Accountability

Financial Accountability

As I see it, there are three forms of accountability, financial, political and administrative. Financial accountability comes within the domain of the Comptroller and Auditor General and the Dáil Public Accounts Committee. It is not an issue I intend to dwell on in my talk other than to make the point that total health spending now amounts to about €12billion which represents about 9% of GNP. It is generally accepted that there is now a pressing need to ensure value for money in how the health budget is spent. And even in the past few years, the Comptroller has highlighted serious shortcomings in how aspects of that budget have been used.

Political Accountability

Political accountability in the health service has undergone some considerable change in recent times although, in practice, these changes are often hardly apparent. The former health boards were kept under very tight control by the Department of Health and Children, but, significantly, had a degree of political accountability through those local public representatives who were board members.

With the creation of the Health Service Executive (HSE), and for reasons which I will not go into today, that layer of local political accountability has gone. Also gone is the practice of the Minister for Health and Children answering parliamentary questions in relation to day-to-day health matters administered by the HSE. These are now matters for the HSE’s Chief Executive who is the Accounting Officer and who is accountable to the Minister for the operation of the HSE. However, in reality, as even the most casual observer can see, de facto political accountability for the public health system still rests with the Minister for Health and Children. Indeed, the "Angola" of Brian Cowan’s time as Minister for Health and Children would be perceived in similar terms by many of his political contemporaries today.

As Ombudsman and Information Commissioner, I work closely with the HSE to ensure that its administration is fair and sound and that it implements the Freedom of Information Acts in a proper manner. While still in its infancy and even yet experiencing some teething problems, I do hope that over time, the HSE will prove itself a success and the enabler of its vision of a world class health service. However, I feel I must make the point that the abolition of the health boards and the creation of the HSE were preceded by little or no debate outside of health circles. As we greeted the new year of 2005 we also began to hear and see a new acronym. But how exactly does it facilitate a better health service and where exactly is it intended to sit vis-à-vis political accountability?

While still on the subject of political accountability, it is worth noting that some of the most serious complaints examined by my Office have arisen from failures in the capacity of the Oireachtas to properly scrutinise secondary legislation. Secondary legislation, or Ministerial Regulations, are often seen by public servants and the Government of the day as a convenient way of "dotting the I's and crossing the T's" of primary legislation. The sheer volume of secondary legislation makes it very difficult for the Oireachtas - with limited resources - to ensure that secondary legislation does not exceed the powers and authority granted in the parent primary legislation.

And these are not just abstract concepts with no relevance to people's daily lives. For example, my Office's 1999 Report on Lost Pension Arrears and its 2001 Investigation Report on Nursing Homes Subventions highlighted shortcomings in how the Oireachtas actually dealt with secondary legislation. The latter Report also dealt with weaknesses at the political-administrative interface, a matter subsequently dealt with in more detail by the Travers Report. My Office's investigation also uncovered serious maladministration resulting in refunds in excess of €12million to patients and their families and more recently, further maladministration which has come to light will result in additional repayments estimated at €1billion. And of course, the regulations underpinning the nursing home subvention scheme have been amended.

Apart from the unfortunate residents of nursing homes and their families, the other casualty of this debacle was the former Secretary General of the Department of Health and Children. The report by John Travers exonerated all Ministers for Health stating that

"no documentation was made available to demonstrate or to indicate that the minister had been fully and adequately briefed by the department on the serious nature of the issues" but added that

"it may be considered that there have been shortcomings over the entire period since 1976 at political level on the part of ministers in not probing more strongly and assiduously the issues."

Subsequently, the Joint Committee on Health and Children, which examined the Travers Report found that there was an

"urgent need to clarify the responsibilities of Ministers and the extent to which they can reasonably be held accountable for the actions of the Department and agencies under their control"

This was quite an extraordinary statement in that the legal responsibility of Ministers for the actions of their Departments is, in fact, clearcut. What it may actually reflect is an evolving reality that for whatever reason, the Oireachtas does not itself feel empowered to hold Ministers to account.

Administrative Accountability

Administrative accountability is the area I operate in as Ombudsman. But let me make it clear that my remit covers actions taken in the performance of administrative functions not only by public servants but also by their respective ministers. With the enactment of the Health Act, 2004 and regulations made under that Act, since the beginning of this year, I now have complete jurisdiction over the public health and social services other than actions or decisions which, in my opinion, relate to clinical judgement. Before I describe my functions in the health area, let us just take a moment to examine what remedies were available to users of the public health system, when things went wrong, before this very important extension to my remit was put in place.

As I have already mentioned, there was litigation. It is a costly remedy, highly adversarial and most significant of all, focused on financial compensation and not on improving the quality of health service delivery. Also, in the absence of properly functioning internal complaint systems, it is also highly corrosive; it predisposes health service personnel to see every complainant as a potential litigant and thus encourages the withholding of information which, if given freely at an early stage, might actually have helped to resolve the complaint there and then. That is not to say that some complaints are not appropriate for litigation. In a small number of cases it will always be the most appropriate avenue for securing access to justice.

The other traditional avenue available to complainants was to make representations to their public representative who, in turn might table a parliamentary question about the particular grievance. As mentioned earlier, local political input, such as existed with the former health boards, is now gone as is the facility to table PQs in relation to the actions of the HSE. The Medical Council was, and continues to be, another option for complaint but, because of its focus on fitness to practice by medical professionals, would have always been seen as something of a "nuclear" option. However, recent legislative proposals, imperfect though they may be, do at least bring a greater degree of transparency to its operations and greater scope for participation by the complainant in the complaint examination process.

These traditional methods of complaint making highlight the lack of user-friendliness and the failure to put the complainant in control of the process. They also expose the lack of a facility to deal with simple grievances. I am glad to say that all of this has now changed with the introduction of a statutory complaints procedure for the HSE and related bodies and the extension of my jurisdiction to the same bodies. In effect, I have now become the Health Ombudsman for the public health service.

The Ombudsman and the Health Service

The net outcome of this development is that the major hospitals in the Dublin area, the so called Public Voluntary Hospitals, are now within my jurisdiction, as are other similar hospitals in the rest of the country, together with institutions, nation-wide, providing services on behalf of the HSE to the intellectually disabled. My remit has also being extended by provisions contained in Part 3 of the Disability Act 2005. I now have jurisdiction to deal with complaints about actions relating to access to public buildings and services, and also in relation to sectoral plans drawn up by a number of key government departments, including the Department of Health and Children.

My annual reports detail the myriad ways in which my Office has impacted on the lives of ordinary individuals who have had cause to complain about our health services; families seeking answers from hospitals about the care of their loved ones, older people seeking affordable care to which they have an entitlement, parents seeking allowances for their seriously disabled children, querying the lack of health services for their children, or applying for medical cards or health related personal social services. The potentially devastating impact of such shortcomings in the health services has been brought home to everyone through the ongoing nursing home debacle, which emanated from a long running failure to acknowledge the illegality of actions which raised charges on patients in public nursing homes and other institutions.

Current issues on my desk include an unexpected death in a regional hospital, care and treatment in a public nursing home, in a maternity hospital, in an intensive care unit, the transmission of urgent medical reports. So how do I go about ensuring accountability in such diverse areas? The following outline of a particular case is a good example.

A Case Study

In my 2005 Annual Report, I reported on the outcome of an investigation of a complaint against Sligo General Hospital. The complaint came from the members of a family, whose father died in January 2000, two days after he had been admitted to Sligo General Hospital. My investigation dealt with two main issues 1) shortcomings in the standard of care and attention that the hospital afforded to the patient, and 2) the inadequate manner in which the hospital dealt with the family's subsequent complaint in relation to the standard of care and attention. I want to take this opportunity to publicly acknowledge the comprehensive steps which have been taken in Sligo to rectify past failings in the provision of patient care which were highlighted in my Report.

A Philosophy of Care has been drawn up by the nursing staff working on the ward in which the patient at the centre of the complaint was treated. I am heartily encouraged by the concepts behind the philosophy, which I understand have been embraced by all members of staff. The words "working in partnership with the patient" and "individuality of care" are key to ensuring that the patient remains the primary focus in the provision of a quality service.

Close to my heart is the issue of dying with dignity and that is why I recommended in my report that protocols should be developed for all staff in relation to treating recently bereaved people with compassion and understanding. I understand that the nursing team sought and obtained the assistance of the Irish Hospice Foundation because their key priority was to change the culture of care in respect of dying, death and bereavement in Sligo General Hospital. This has now led to the development of standards and policies in the area of death, dying and bereavement and I understand that the North West Hospice also assisted Sligo General in their efforts to bring the ethos of hospice care into Sligo General Hospital. By engaging with the Hospice Foundation's national programme, the staff at Sligo Hospital have helped to ensure that they have in place systems, policies and practices which will enable them to provide the best care possible to meet the individual needs of patients and their families.

I was also pleased to learn that a Steering Committee had been established which will drive new initiatives in relation to patient autonomy, integrated care, communication skills and dignity and design. Perhaps more importantly, this Committee will ensure that these initiatives are acted upon, and are continuously evaluated within the hospital itself.

A communications protocol has also been developed which highlights best practice in relation to the provision of information to patients and their families, and there is an onus on the line manager in each speciality to ensure that all staff working in their area have read and understand the policy and guidelines in operation. In this context, I note that the protocol provides that nursing staff must actively engage with the patient and their families and be pro-active in the communication process. The point had been made to me by the family of the patient who died that they had to instigate contact with the nursing staff, and this lack of communication can often heighten the level of distrust and uncertainty experienced by relatives. The question had also arisen as to why a young medical intern had advised the family regarding their father's medical condition. I am encouraged to note that this area has been addressed in the protocol which states that Senior House Officers and Medical Interns should not be involved in giving information to relatives.

Other important nursing issues which arose in the course of the complaint such as the placing of a fluid restriction notice sign over the patient's bed, and the provision of oxygen to patients have been comprehensively addressed. In addition, I note that a Committee has been established to focus on eleven essential nursing care standards.

I think it is important that the best practice policies and procedures which the staff at Sligo General Hospital have adopted and implemented should be extended to other service providers throughout the Health Service Executive who might not have such protocols already in place.

Statement of Patients Rights

Last year I published a Statement of Patient Rights which I have developed from my experience of dealing with complaints against the public health service. I see this statement as a code of good practice for the health service in dealing with patients and, together with the Ombudsman Act, I intend to use it as a framework in my examination of complaints relating to public healthcare so that it becomes a living reality for all patients.

These rights cover the entire aspect of patient care and treatment; Human Rights and Values, Information, Consent, Confidentiality and Privacy, Care and Treatment, Patient Safety. As such they are not dissimilar to the concepts of Trust, Dignity, Information, Communication, Confidentiality and Competence which are encompassed in the ethical guidelines established by the Medical Council for doctors practising in Ireland. Although long established these guidelines are dynamic, and acknowledged by the Council to be a continuous process in relation to their application to new situations. The rights are also not dissimilar to the provisions of the Code of Professional Conduct established by An Bord Altranais for nurses practising in Ireland, the framework upon which nurses can base their professional decision making, promotion of high standards and acceptance of responsibilities.

In addressing this issue I made a distinction between social and individual rights. Social rights in health care relate to the societal obligation undertaken, or otherwise enforced by government and other public or private bodies, to make reasonable provision of health care for the whole population. Social rights are dependent on political, social, cultural and economic factors. They are enjoyed collectively and are relative to the level of development of society; they are also in a large measure subject to political priorities for development in our society.

By contrast, individual rights in patient care are more readily expressed in absolute terms and, when made operational, can be enforceable on behalf of an individual patient. It was not my intention to create new rights, but to distil those elements from the current thinking as outlined above, and adapt them in a statement of good practice for the health service in dealing with patients. I avail of every opportunity to make public health service providers aware of these standards, and ensure that they should be under no illusion but that I intend to see that the operation of this statement becomes a living reality for patients.

Good Administration in the Health Service

So what will such a living reality look like ?

I will be looking to see that the total (physical, mental and social) needs of the patient are taken into account; that a full range of treatment-curative, preventive or rehabilitative, is dispensed in ways that are proper and fair.

I will be looking to see that the public health service is conscious of the vital importance of the involvement of the individual in protecting and restoring his or her own health. I will be looking for the excellent communications that are required in order to persuade individuals, families and communities to adopt healthy lifestyles and become partners in the health effort. It is not simply about treating individuals who seek help, but also taking a positive interest in community health activities which will benefit large numbers of people.

International evidence points to the need to engage with the patient or client in working partnerships if improvements are to be made in our public healthcare system. Patients must be part of the solution and not seen as the root cause of the problem. Research by the Irish Society for Quality and Safety in Healthcare, in asking questions of patients about their perception of care and treatment received in acute hospitals, continually highlights that there are serious deficits in communication and the provision of information to patients and their carers and generally in treating patients as persons and not as a broad inanimate category.

I will also be looking for those with responsibility within the system to work within multidisciplinary teams, in close association with other partners for health and social development.

In pursuit of the foregoing there are two particular areas which are close to my heart. The first is the absolute vital importance that the service provided by the public health system is safe, first last and always.

The problem of adverse events in healthcare is not new. The turn of the century has witnessed a stream of publications in leading medical journals documenting serious shortcomings in relation to the safety of patients. A major study in Harvard University found that 4% of patients suffer some kind of harm in hospital in the United States; 70% of the adverse events resulted in short-lived disability, but 14% of the incidents lead to death. A report by the Institute of Medicine estimated that "medical errors" cause between 44,000 and 98,000 deaths annually in hospitals in the USA - more than car accidents, breast cancer or AIDS. The UK Department of Health, in its report, "An Organisation with a Memory", estimated that adverse events occur in around 10% of hospital admissions or about 850,000 adverse events a year. The Quality in Australian Health Care Study (QAHCS), released in 1995, found an adverse-event rate of 16.6% among hospital patients. The Hospitals for Europe's Working Party on Quality Care in Hospitals estimated that every tenth patient in hospitals in Europe suffers from preventable harm and adverse effects related to his or her care. Studies in New Zealand and Canada have also suggested relatively high rates of adverse events at around 10%. Moreover, while errors may be more easily detected in hospitals, they afflict every health care setting: day-surgery and outpatient clinics, retail pharmacies, nursing homes, as well as home care.

There are no comparable studies in relation to Irish public healthcare, but should we expect things to be any better or worse than in those other countries? Is it possible that there may well be a serious problem in the Irish healthcare system which is not directly evident? In a paper presented in 2002 at a conference of the Irish Hospital Consultants Association, the speaker extrapolated the American experience into the Irish acute hospital setting. Her extrapolation indicated that some 937 deaths could occur annually as a result of preventable clinical error, and that death due to preventable clinical errors could exceed the number attributable to breast cancer, then the sixth leading cause of death in Ireland. This implied that, in 2002, more people would die as a result of preventable clinical error (937) than from Breast Cancer (602). If this extrapolation could be proven then this would be truly an appalling vista. What is also truly appalling is the fact that we do not have the research which could confound or substantiate that extrapolation.

Traditionally, medical errors have been considered performance problems that can be addressed by counselling, retraining, re-educating, and restricting practice. Blame is placed on the individual without consideration of the factors contributing to the error e.g. medications may have similar names or packaging, which can lead to the misreading of a label, they may come in multiple strengths and concentrations and are often dispensed in combination with other medications. These factors can present a higher risk if a caregiver is rushed, tired, distracted, or under pressure during an urgent or emergency situation. Environmental and situation factors, such as poor lighting, noise, or interruptions, can contribute to errors at the "sharp end" where healthcare staff provide care and interact with patients.

Should unsafe practice be blame-free and punishment free? The answer is no. A just culture should not be confused with one in which there is no accountability. Medical professionals must be accountable for any deliberate actions that may result in patient injury, and those who are reckless or choose to violate rules must be held accountable for these actions.

I am particularly impressed by the following Statement of Principle enunciated by the National Patient Safety Foundation, an organisation established by the American Medical Association, and she has used it as the framework for the statement of rights enunciated in the Statement of Good Practice, which will guide her in the examination of complaints in this area.

"When a health care injury occurs, the patient and the family or representative are entitled to a prompt explanation of how the injury occurred, together with its anticipated short and long-term effects. When an error contributes to the injury, the patient and the family or representative should receive a truthful and compassionate explanation about the error and the remedies available to the patient. They should be informed that the factors involved in the injury will be investigated so that steps can be taken to reduce the likelihood of similar injury to other patients.

Protection of Whistleblowers

Of particular importance is the right that each individual has to expect that health care staff who report existing risks to their superiors and/or peers will be protected from possible adverse consequences. A blame-free, non-punitive culture encourages individuals to report errors and truly learn from their mistakes. It also supports organisations in their efforts to better understand those errors and make improvements. A just environment assumes that staff at the sharp end of care are concerned about patient safety, but are working within complex systems and in situations that potentially contribute to errors.

In this context provisions contained in the Health Act 2007 are of some importance. The Act provides for protection for whistleblowers in the health services. The legal term is "protected disclosure". These new provisions provide protection for health service employees and for the general public if certain conditions are met. In general, employees are protected from victimisation by an employer and from civil liability if they make a protected disclosure in accordance with the procedures to be set up. Everyone is protected from civil liability if they make protected disclosures to regulatory and monitoring bodies.

Dying with Dignity

The second particular area relates to the right of every individual to die with dignity. I firmly believe that patients have the right to humane terminal care and to die in dignity.

Over half of all deaths in Ireland occur in hospitals and it is therefore vital that the experience of such a largely number of people, an estimated 15,000 people and their relatives every year, should be a matter to be taken into account in consideration of this issue. Such experience could lead the development of the adoption within the health services of the concept of a ‘good death’; the right of people who are dying in hospitals to a dignified and as pain free as possible death, in conditions which enhance their dignity and privacy and take into account the needs of family members and of other hospital patients; the right of patients and, where appropriate their families, to be communicated with respectfully in facilities which afford full privacy and confidentiality. I am afraid that we have a long way to go yet in this regard as the following recent observations by Edel Tinsley a young woman suffering from Cystic Fibrosis indicates;

She has often observed old and young people dying in the room she slept in. The unspoken rule is, if you can walk out, you leave, or if you can't, you put on your headphones and pretend. You pretend you cannot see the silhouettes through the curtains, bending down to give one last kiss. You pretend that you do not feel guilty for being there, guilty about your hacking coughs which interrupt their final moments. You pretend you have never seen the big blue body trolleys rush by.

If Edel's account of her life as experienced in our hospitals, does not move each and every one of you to tears then nothing will. In the past, when I have spoken of such matters, I am frequently given a list of reasons, excuses as to why those horrible things happen and continue to happen. Yet it is my firm belief that if people at the very top of our enormous healthcare pyramid simply say, there is no excuse, we will no longer tolerate it, then profound change will occur. A healthcare system is only as good as the values that inform it, the values that flow and cascade down from the top.

Accountability in this area requires a movement within the Irish public health care system towards a position where the patient, taken in his/her broadest context, is placed at the centre of every action and job, at every step of his or her journey through the system, a position where the health and safety of the patient comes first, last and always. Such alignment encompasses the concept of professionalism; the social contract between professions, with espoused core values of scientific expertise and altruism, and society. Professionalism in this context is the moral understanding among professionals that underpins the concept of a social contract between the profession and the public.

By virtue of such professionalism members of the public should expect that medical professionals have an awareness that the profession of medicine is one of constant change and, thus, they need to be lifelong learners. They need to be prepared to demonstrate their competence in an ever-changing environment, to ensure that their practice is based on evidence and to respond to the changing environment in which they practice. This includes recognition of the role of the patient in the patient/ professional interaction, advocacy on behalf of the patient, the willingness to work in a variety of settings where need exists for medical services and mutual recognition of the roles of other health care professionals.

But let me just finally return once more to that concept of values. Yesterday a document landed on my desk, a Joint Policy Paper on Irish healthcare from the Adelaide Hospital Society and The Jesuit Centre for Faith and Justice. Now I know that we could paper all of our collective walls with policy papers on the health service, but let me just quote one paragraph from it.

"Values", it states, "provide direction for a key task in designing and sustaining our health care system - namely, making choices: choices as to who gets care, which type of care is provided, who pays for care and how we pay for care. Most importantly, values inform the quality of care provided because health care is fundamentally about human beings caring for other human beings and quality of that interaction is shaped by the values we bring to it."

END

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