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Putting People First (05.10.2006)

Address by Emily O'Reilly, Ombudsman at the Association of Directors of Nursing & Midwifery AGM, Tullamore, Co Offaly

Good morning everybody and thank you for your invitation to be here today. It is a particular pleasure to be back in my home town of Tullamore, where my two aunts, Emily and Ann O'Reilly both worked as staff nurses in Tullamore general hospital for a great number of years. They were two wonderful highly intelligent women, ahead of their times in many ways, and from whom I developed a great curiosity about the world through their obsession - which they passed on - with general knowledge crosswords and current affairs generally. They were also the most generous of aunts. Neither married and neither had children so they spoilt their nieces and nephews instead. So as you can imagine, I have had a very positive image of nurses from a very early age.

I am not a doctor, a therapist of any kind. I am not a psychiatrist, a psychologist, a pharmacist or a community care worker. I am not a Director of Nursing and Midwifery although, as a mother of five, I have a healthy respect for such individuals. I do, however, inhabit a unique position in the Irish health service. I deal with individuals who perceive themselves to have been unfairly treated by a public health service provider. These individuals represent a cross section of Irish society. You see them everyday in the clinics, surgeries, hospital wards, community care centres where you and your nurses work. Their behaviours reflect this diversity. Some are fearful, timid, reliant. Others are aggressive, loud and challenging. Some are upset that the system to which they gave their loyalty has let them down. Others campaign on behalf of various causes. Some will put you to the pin of your collar to meet their demands and some, a very few, will have the measure of you, and the system, entirely.

If there is one insight that I have gained from all of this experience, it is that each of them is a unique individual person, just like each one of you listening to me here today. There has never been an exact replica of you before, nor will there ever be again. It is a truism; all individuals differ. We all make sense of any given situation in our own unique individual ways. We all differ in our construction of events and the meaning that we attribute to them, which will be unique.

An individual person will come before you as a patient, with a unique system of beliefs and values based on his/her own personal history. These beliefs and values act as internal filters which provide motivation for action, determine how decisions are made and, as I experience, give a reference point for evaluating events and circumstances after they have happened. When a person feels unfulfilled or unsuccessful in an exchange with another individual it is likely that his/her beliefs or values for that event have not been met. This is the case whether the exchange is between persons as; husbands and wives, parents and children, employers and employees, Ombudsmen and complainants or Directors of Nursing and Midwifery and patients.

My experience is that the key to dealing with individual complainants is to acknowledge them as unique persons and act accordingly. It is my belief that this concept also applies in the capacity that you represent in the Irish health service. One consequence of adopting this concept is that one is required to differentiate between the person and the category to which he/ she belongs. For most of you the category generally is that of "patient". However, it is very important that you do not confuse the category "patient" and the entity "person". They are two different logical levels. In fact it can be argued that you cannot even discuss them in the same sentence. A patient is a member of a category, he/she is not the category. He/she is first and foremost an individual person. Medical treatment is delivered to a person, not to a category.

I have often thought that the logic of such a differentiation leads, not to the development of a patients charter, but rather to the development of a charter of a persons rights, as a patient, while they are in receipt of medical treatment. It was with this concept in mind that I developed the Statement of Good Practice for the Public Health Service in Dealing with Patients which, together with the provisions of the Ombudsman Act, I intend to use as a framework in my examination of complaints relating to public healthcare. I hope that the statement will be embraced positively by all health agencies so that it becomes a living reality as one way of putting the patient first.

The Statement covers a number of diverse areas which cover human rights and values in healthcare, information, consent, confidentiality/privacy, care/treatment and safety encompassing the following;

Values in Health Care

As best practice individual patients should be respected as human beings, to have their physical and mental integrity respected, to the security of their person, to have their privacy respected, and to have their moral and cultural values and religious and philosophical convictions respected.

Information

As best practice individual patients should be able to access information about the available health services, to be fully informed about their health status, including the medical facts about their condition; about the proposed medical procedures, together with the potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis and progress of treatment.

Information should be withheld from a patient only exceptionally, when there is good reason to believe that this information would, without any expectation of obvious positive effects, cause them serious harm. Information should be communicated in a manner appropriate to the capacity for understanding, minimising the use of unfamiliar technical terminology.

Consent

As best practice the informed consent of the patient is a prerequisite for any medical intervention, and the informed consent of the patient is needed for participation in clinical teaching, and for participation in scientific research.

Confidentiality and Privacy

As best practice all information about a patient's health status, medical condition, diagnosis, prognosis and treatment and all other information of a personal kind must be kept confidential, even after death.

Patients have the right of access to their medical files and technical records and to any other files and records pertaining to their diagnosis, treatment and care and to receive a copy of their own files and records or parts thereof, provided access does not put their health at risk

Patients admitted to health care establishments have the right to expect physical facilities which ensure privacy, particularly when health care providers are offering them personal care or carrying out examinations and treatment.

 Care and Treatment

As best practice patients should expect a quality of care which is marked both by high professional standards and by a humane relationship between the patient and health care providers. Patients should be treated with dignity in relation to their diagnosis, treatment and care, which should be rendered with respect for their culture and values. Patients should be able to enjoy support from family, relatives and friends during the course of care and treatment and to receive spiritual support and guidance at all times.

Safety

As best practice patients should be free from harm caused by failures in service delivery, medical malpractice and errors, and when availing of health services that such services and treatments meet high safety standards. Each patient has the right to expect that hospitals and health services monitor risk factors on a continuous basis and ensure that systems are in place to ensure optimum quality and safety of the environment of health service delivery to patients and service users.

I would hope that you would see this Statement as being complementary to the standards that you inculcate in the nurses for whom you have responsibility. In this context could I highlight two areas where I think that you have a particular role, as Directors of Nursing and Midwifery, to play in relation to the foregoing.

The first is the right of an individual to die with dignity. Over half of all deaths in Ireland occur in hospitals and it is, therefore, vital that the experience of an estimated 15,000 people and their relatives 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 death, pain free as is possible, and in conditions which enhance their dignity and privacy. The concept would also 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 respect, in facilities which afford full privacy and confidentiality. This, in my view, would lessen the instances of complaint from members of the bereaved's family

I fully accept that staff within the hospital service face particular challenges in dealing with complaints from family members who have been recently bereaved, often in the most unexpected circumstances. In addition to coping with a sudden bereavement, family members invariably seek to ascertain the precise cause of their loved one's unexpected death and may often question the medical and nursing treatment provided. This often occurs at the stage in their cycle of grieving when they are shocked and in disbelief of the bereavement. If they construe that hospital staff are dealing with their query or complaint in a haphazard or unsatisfactory manner, their shock and disbelief can manifest itself in anger for not providing clear and cogent explanations to their queries. In dealing with such individuals, it is incumbent on healthcare staff, both medical and administrative, to understand and empathise with the grieving process, and the need to give clear explanations about all of the issues surrounding the death. It is for this reason that I consider that staff within the health service, particularly in the acute hospital services sector, should receive adequate and ongoing training in how to deal with complainants or queries from people who are recently bereaved. It is incumbent on management to ensure that personnel dealing with the recently bereaved have the capacity to deal with them in a proper and sympathetic manner.

The second is in the area of record keeping. A person's medical records are amongst the most sensitive of personal records and great care should be taken to ensure the safe holding of such records. Apart from their sensitive nature, there is also the very practical consideration that they can be of considerable clinical value in relation to the ongoing care of a patient. Their primary purpose is to document the assessments underlying the progress of the patient's care and so contribute to the quality of that care. As months or years may elapse between treatments or illnesses, and staff may have moved on, the records should serve to reconstruct events at a later date without recourse to memory.

Poor record keeping can lead a patient's care being adversely affected through; an increased risk of medication or other treatment being duplicated or omitted, communication problems between staff, both nursing and medical, a failure to focus attention on early signs of change in a patient's condition and a failure to place on record significant observations and conclusions.

It is the experience of my Office, however, that when we have had occasion to examine patient files we have often found them to be unsatisfactory as a record of the various elements of a period of hospitalisation. International research shows that Ireland is not unique in this situation. Reports in the UK reveal a lack of structure, disorganisation, illegibility, absences of problems or diagnoses. Similar problems were revealed in Australia, and in Spain 15% of record reviewed were so illegible as to be rendered meaningless. It is beyond comprehension that caring professions can be so lax in this regard. It demonstrates a level of disrespect and disregard, I would hope unintentional, for the patient.

The retention and efficient management of patients' records should be a key responsibility. In this context I would expect that such records would be legible, intelligible, complete, specific, contemporaneous, signed and dated. Abbreviations should be universally understandable and not open to misinterpretation. They should be written with care (a slip of the pen can easily change the meaning of an abbreviation). In addition certain abbreviations are unacceptable (e.g. coded expressions of exasperation, invective or sarcasm). That makes life easier for all hospital personnel using the records, for the hospital administration in dealing with any complaint and, ultimately, for me if I have reason to include such records in the examination of a complaint.

The foregoing is my perspective. However, if you were to ask me what putting the patient first might mean for Directors of Nursing and Midwifery the following aspects would come to my mind;

• You would work solely in the interest of your patients; this clearly concerns how active or passive the patient is;
• You would practice in accordance with the preferences or wishes of your patients; this clearly concerns who has control;
• You would operate in partnership, with the involvement of your patients; this clearly concerns the level of collaboration, consensus or conflict there is in the process; and
• You would adopt a person centred approach; this clearly concerns the sort of relationship that should develop between a Director of Nursing /Midwifery and his/her patient.

In an ideal world the foregoing would fuse into a synthesis comprising of a focus on illness rather than disease, in particular the specific individual's experience of the illness; sharing power and responsibility so that the patient is an active rather than a passive participant; a therapeutic alliance between the medical professional and the patient, with both sets of emotional responses and experiences being part of that alliance and empowerment.

Empowerment comes from teaching things to patients so that they can become less dependent on you. It means sharing the freedom to act. There are two fundamental issues in the empowerment of a person in this context; information and the discretion to make decisions, and both flow from the premise that each person is fundamentally responsible for his/her own health. Whilst they may cede responsibility to more competent individuals when they seek treatment, they are entitled to retain appropriate discretion over decisions throughout the process, leading to responsibility for the results which flow from such decision making.

Information is the currency of empowerment. Empowerment is about sharing information. A person, as a patient, should be given the maximum amount of information consistent with his/her wishes, needs and ability to assimilate. There are two key questions here; What does the person want to know? and what does the person need to know? In this context I found the recent results of a national study which found a high level of dissatisfaction, confusion and varying practices among Irish consultant physicians regarding the making of decisions to resuscitate patients, in certain circumstances 58% indicated that the " nearly always " discussed a patients resuscitation status with relatives, 37% said they only did it " sometimes " and 3% indicated that they " almost never" did so. Just under 6% were not making resuscitation decisions at all, with some of them leaving it to junior doctors. It is very difficult to see any element of patient centerdness in this latter approach. Perhaps you could tell me if a high response, indicating that the problem was left to nursing staff, would have been recorded if Directors of Nursing and Midwifery had been included in the survey. I suspect so.

So far I have dealt with this issue from my perspective and your perspective. The missing perspective is that of a patient.

I know a man who has been hospitalised on nineteen occasions in seven different hospitals over a fifty year period. He has suffered from scoliosis, loss of kidney function, spinal fusion, impaired lung function and latterly MRSA and six emergency admissions for pneumonia over that period.

He has been the recipient of top class health care and his life has been saved on a number of occasions. He has also been witness to adverse incidents and near misses. Out of all this experience he has learned, and been empowered, as a patient, and two axioms resonate for him.

Axiom 1

Medical professionals tend to treat disease as a medical disorder. However, patients experience disease as sickness and illness, and in the land of the sick emotions reign supreme. Our mental well-being is based, in part, on the illusion of invulnerability. Illness, especially serious illness, shatters that illusion attacking the premise that our private world is safe and secure.

Emotions that are expressed by patients, externally through language and behaviour or internally as feelings, are an indication that their personal construing system, the system by which they make sense of their world, is malfunctioning. In the main patients experience three emotions when illness strikes:

Anxiety: the inability to anticipate what is coming next, they do not know what to do next. The response of the individual delivering the service should be by way of the provision of information, in a way that makes sense to the patient, developing their confidence and empowerment. Anything else is an invitation to despair.

Fear: the sense that life is going to be changed in some way, but not yet in an overwhelming fashion. The response of the individual delivering the service should be by way of expressions of empathy and therapeutic conversation.:

Threat: to the very being of the patient, a sense of overwhelming loss, confusion; their world has become chaotic. The response of the individual delivering the service should be by way of the provision of safe, high quality medical care in addition to the responses outlined in the other emotions.

I am very well aware that many of you experience other emotions emanating from individual patients including aggression and hostility, and these are issues in which healthcare staff have a right to be treated as human beings also.

Axiom 2

Despite all the advances in medical technology, healthcare is still delivered through individuals, and the best quality care is delivered by individuals who act out of a sense of their own personal excellence. Irish health care is in a period of complex change. I know that many of you feel a sense of being under siege, with demands for greater accountability yet with little sense of appreciation. In a system increasingly driven by budgets it is easy to lose the sense of how critical you are, as an individual nurse, to the well-being of your individual patient.

Whether or not the responses which I have outlined in relation to the emotions of anxiety, fear and threat above are present for a patient depends on the healthcare professional acting out of that sense of their own personal excellence, guided by their humanity and not simply doing a job defined by the task dimensions of their occupational role. The latter are simply doing a job serving a system that relies on them to do so. The former have that something, that something which transcends the limits of system requirements, and leads them to be their very best in every circumstance, and which is most evident in their relationships with their individual patients. I believe that those will automatically support, what I consider to be the primary organisational value of the HSE, delivering a healthcare service which is patient centred, patient driven, where the health and safety of the patient comes first, last and always.

As Directors of Nursing and Midwifery I think that you are critically placed to deliver along that value and I wish you every good wish in your endeavours in that regard.

Finally can I draw your attention to the provisions of Health Act 2004 which makes provision for the establishment of a statutory complaints procedure in the health service, not only for those services delivered by the Executive, but also for those agencies providing services on behalf of the Executive. The net outcome of this development will be that the major hospitals in the Dublin area, the so called Public Voluntary Hospitals, will come within my jurisdiction, as will 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. There will be occasions when my Office will be at odds with these bodies, it will be critical of their actions and it will highlight shortcomings. This is something which derives from the very nature of my Office. However, a point often made to me by complainants is that the service providers should learn from their mistakes, so as to ensure that other people do not experience similar problems.

To this end, my Office has sought to assist the agencies in the public health services in developing better quality decision making in the delivery of their services to the public. My staff have engaged with the former health boards, and specific professional groups, in seminars and training exercises on the issues which are of importance to me in the examination of complaints. The emphasis in all of these interactions was always positive i.e. how to improve the quality of the health service delivered. This educative aspect casts the Ombudsman in the role of a "critical friend" and I look forward to the further development of this role with the new Executive and the other agencies providing public health services in general, and perhaps with you as a group in particular, as a further development along the road towards a patient centered health service.

Finally, I think that it is a tribute to the continuing respect and esteem that the Irish public have in the Irish nursing system, that so many people leave hospitals with a phrase so well-used that it has almost become a cliche: "The nurses were wonderful." The essence of good nursing addresses the essence of humanity itself; what is appreciated is not the just the practical skill, but that unteachable moment of contact and communication when someone who is vulnerable is made to feel safe again.

Thank you very much for you attention.

Appendix

The Ombudsman's Statement of Good Practice For The Public Health Service In Dealing With Patients

1. HUMAN RIGHTS AND VALUES IN HEALTH CARE

Everyone has the right to be respected as a human being.

Everyone has the right to have his/her physical and mental integrity respected.

Everyone has the right to the security of his or her person.

Everyone has the right to have his/her privacy respected.

Everyone has the right to have his/her moral and cultural values and religious and philosophical convictions respected.

2. INFORMATION

Every patient has the right to information about the available health services.

Every patient has the right to be fully informed about their health status, including the medical facts about their condition; about the proposed medical procedures, together with the potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis and progress of treatment.

Information should be withheld from patients only exceptionally, when there is good reason to believe that this information would, without any expectation of obvious positive effects, cause them serious harm.

Information must be communicated to the patient in a manner appropriate to the latter's capacity for understanding, minimising the use of unfamiliar technical terminology. If the patient does not speak a common language, some form of interpreting should be available.

Every patient has the right not to be informed about aspects of their condition and prognosis, at their explicit request.

Every patient has the right to choose who, if anyone, should be informed on their behalf.

Every patient has the right to be informed of the identity and professional status of the individuals taking care of them and of any procedures and guidelines which would bear on their stay and care.

Every patient has the right to be able to request and be given a written summary of their diagnosis, treatment and care on discharge from a health care establishment.

3. CONSENT

The informed consent of the patient is a prerequisite for any medical intervention.

Every patient has the right to refuse or to halt a medical intervention. The implications of refusing or halting such an intervention must be carefully explained to the patient.

The consent of the patient is required for the preservation and use of all substances of the human body. Consent may be presumed when the substances are to be used in the current course of diagnosis, treatment and care of that patient.

The informed consent of the patient is needed for participation in clinical teaching.

The informed consent of the patient is a prerequisite for participation in scientific research.

4. CONFIDENTIALITY AND PRIVACY

All information about a patient's health status, medical condition, diagnosis, prognosis and treatment and all other information of a personal kind must be kept confidential, even after death.

Confidential information can be disclosed only if the patient gives explicit consent or if the law expressly provides for this. Consent may be presumed where disclosure is to other health care providers involved in the patient's treatment.

All identifiable patient data must be protected. The protection of the data must be appropriate to the manner of their storage. Human substances from which identifiable data can be derived must be likewise protected.

Patients have the right of access to their medical files and technical records and to any other files and records pertaining to their diagnosis, treatment and care and to receive a copy of their own files and records or parts thereof, provided access does not put their health at risk

Intervention may be carried out only in the presence of those persons who are necessary for the intervention unless the patient consents or requests otherwise.

Patients admitted to health care establishments have the right to expect physical facilities which ensure privacy, particularly when health care providers are offering them personal care or carrying out examinations and treatment.

5. CARE AND TREATMENT

Patients have the right to a quality of care which is marked both by high professional standards and by a humane relationship between the patient and health care providers.

Patients have the right to be treated with dignity in relation to their diagnosis, treatment and care, which should be rendered with respect for their culture and values.

Patients have the right to enjoy support from family, relatives and friends during the course of care and treatment and to receive spiritual support and guidance at all times.

Patients have the right to humane terminal care and to die with dignity.

6 SAFETY

Each patient has the right to be free from harm caused by failures in service delivery, medical malpractice and errors.

When availing of health services each patient has the right to expect that such services and treatments meet high safety standards.

Each patient has the right to expect that hospitals and health services monitor risk factors on a continuous basis and ensure that systems are in place to ensure optimum quality and safety of the environment of health service delivery to patients and service users.

Each patient has the right to expect that all managers and health professionals accept full responsibility for the safety of all phases and elements of medical treatment within their control.

Each patient has the right to expect that medical professionals minimise the risk of errors by monitoring precedents and receiving continuous training.

Each patient has the right to expect that health care staff who report existing risks to their superiors and/ or peers will be protected from possible adverse consequences.

This last right is of the utmost importance. A blame-free, nonpunitive 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.

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