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"Dying in Ireland" (14.11.2007)

Address by Emily O'Reilly, Ombudsman at the Hospice Friendly Hospitals National Conference, Clontarf Castle, 14th November 2007

I would like to begin by thanking the Hospice Friendly Hospitals Programme for inviting me to talk to you here today. I have commended this initiative in the past and I hope and would like to believe that the enormous amount of research conducted by the various bodies involved in end of life care will mark a sea change in how those issues are dealt with by hospitals and by long stay care centres. The latest report by the team led by Professor Eamon O'Shea is remarkably clear and emphatic about the problems faced by older people at the end of their life and the changes that need to be brought about in order to deal with those problems. The report puts it at its most simple and at its most profound when it states that nothing less than an understanding of the human condition is central to good quality care for older people at the end of their lives. Once we get beyond the process and into an understanding based on our own humanity of that lived experience will we begin to see real and lasting change.

Because my job as Ombudsman covers such a wide area of public life, I do get invited to speak at many conferences and seminars about all sorts of issues, from disability, to immigration, to welfare, to education, to local authority planning and so on. In most instances I have an intellectual but not a personal engagement with the issue. I will always attempt however to make that imaginative leap into the lives of the people that I am talking about so that I can try to make them feel confident that not alone do I know what I'm talking about vis a vis rules and regulations but that I also have some sort of human insight into the issue at hand.

But today's conference is different. I don't have to make a huge imaginative leap to talk about the last days and hours of a person's life. As some of you are aware from my talk at another event some years ago, my father died from cancer in January 2005 and spent his last few weeks in Our Lady's Hospice in Harold's Cross where he received exquisite care. My witnessing of that death had a profound impact on me, not just in the obvious personal sense, but in what I try to bring to bear in cases that I deal with as Ombudsman involving hospitals and particularly death in hospitals.

As a former journalist, I occasionally found myself observing my father's last days in a detached way. I was curious about the processes of the hospice, the engagement of the medical staff, the attitude of the canteen assistants, the chat of the hairdresser where I spent an hour on the day before my father died having my hair done. I was as fascinated by the approach of a tea trolley at a bed as I was by the interaction with patients of the consultants. I was an explorer in an unknown territory and if it was like that for me, what must it have been like for my father who knew that his journey would never go beyond the hospice doors again?

The lessons I took from that experience were these; one, that how people are treated is utterly dependent on the ethos that permeates the place where they die. The hospice was suffused with a belief in one simple thing - the dignity of the human being and it was that simple yet profound belief that informed every contact every interaction. It was that belief that ensured that above all, people did not die in pain, that they did not die in the full public gaze of others, that up until that moment of death their needs were still to be attended to, whether that be the changing of a set of clothes, or a shave, or the simply laying on of hands in the form of massage.

The second lesson was that despite all of this, death is an intensely, personal, intensely isolating experience. Like birth, you experience it alone. There can be no escape from your thoughts. What you are going through and what you will go through, you will go through on your own. I cannot imagine the psychic pain of that for some though perhaps not all of the people who die whether it be on the side of the road or wrapped in the spiritual warmth of a hospice.

The third lesson, and I think that this is a critical one for those who work in hospitals and other institutions where people routinely die, is that those whose relative or friend is dying, are acutely sensitive to everything that is going on around them even if their attention appears solely to be focused on the person who is dying. They are experiencing a saddening and a seismic event in their own lives. They cannot expect the medical or other staff to comprehend it in the same way, but they do expect at the very least, a deep acknowledgement of their pain, and an effort to treat that pain as decently as possible, even if the manner of how that should be done has to be posted up in a set of hospital protocols.

I also believe that there can be no excuse for doing otherwise. If a hospital CEO or a hospital board commits to ensuring, that in so far as it is humanly possible, no patient will die without dignity in their hospital, then it simply will not happen because it will not be allowed to happen.

My father of course, experienced what would be called in this report a linear death. His death was forecast from some time out, in the last few days, the staff at the hospice were able to predict almost to the hour when he would die. But that is not the experience of the majority of people who die in acute hospitals and in long stay care centres. Death in those places may be sudden, unexpected, even in the case of an elderly person. It can take everybody unawares. But while that is true, what is also true is that death does take place in those settings, routinely, every day of the week. While an individual death may be unexpected, death is not, and it is the lived reality of that fact that hospitals and care homes need to grapple with to ensure, that even the experience of the most unexpected death is not made any worse by the actions or inaction's of those who work in those places.

There are many good practices and Professor O'Shea and his team point them out. There are good written guidelines in the vast majority of centres for care in the last hours of life although it is a concern that those guidelines are generally more available in the private than the public sector. It is also true that great acts of kindness are performed by nursing and other staff even in the most stressful of environments that give immense consolation to the bereaved and that will be remembered for many years to come. There are wonderful first person accounts in this report of the mutual warmth and respect between patients and those caring for them. Equally the strain of looking after the dying and the living by hospital staff is acknowledged in this report; the emotional difficulty in moving in the space of minutes from a death bed to the bed of a sprightly, living patient.

The major weaknesses however, as identified in this report, concern that longer period of time, before the final hours, the time when it is clear that the end of life may be coming. The challenge posed by the report is, as it states, to enhance quality of life for older people at end of life in the preservation of the person's surviving autonomy and dignity balanced against inevitable paternalism.

Much of that care should be delivered as palliative care but that is an alarmingly scarce resource in this country. There are very few designated palliative care beds available and the majority of care staff across all facilities surveyed in this report had not received any formal qualifications in palliative care. Then there is the sectioning off of the elderly, their invisibility possibly cuing lesser concern for their welfare in all of its manifestations. I have heard of some long term care facilities and indeed some hospital wards described as warehouses for the elderly, warm warehouses perhaps with caring staff but warehouses nonetheless, holding centres as death is awaited.

Other barriers to good quality care identified in this report include communication difficulties caused by non-English speaking staff attempting to comfort a dying patient, or a non English speaking patient being cared for by someone who doesn't speak their language. There are huge infrastructural deficiencies which impact hugely on privacy and dignity and funding issues.

So how does all of this relate directly to my work. My Office has dealt for many years with hospitals but up until 2004 with the passage of the Health Act, only with health board hospitals and other institutions. My remit now extends to the voluntary hospitals and to all of those institutions that provide a service to the HSE including long term care homes. As a result, the number of complaints from hospitals in particular has rocketed and I am now receiving on average about two a week. Since 2004 members of the public have a legal right to complain about hospital services and to have that complaint dealt with in a prescribed manner.

I cannot look at clinical judgement; what I can look at is just about everything else in relation to patient care, from the communication of hospital staff, to the charting of interventions, to everything that impacts on the experience of a patient and of their family and friends when they are in hospital or in long term care.

Many, many of the complaints I am getting relate to allegations of poor communication in hospitals and a major concern is the issue of dignity surrounding death in hospitals. This mirrors the pattern in other countries where in the UK for example the greatest number of complaints to the NHS - perhaps not surprisingly - concerns death in hospital. Of course not all complaints can be upheld but the sheer volume of complaints in this area underscores the point I made earlier about the effect of death on those who have witnessed it. Very often the complaint emerges from a misplaced sense of guilt; a concern that if they had done more, had demanded that more be done by the hospital staff then the person that they loved might not have died.

To date, in this country, I have been presented with complaints relating to

• allegations of lack of supervision of a patient on a High Dependency Ward
• allegations of poor communications in relation to a test result, with very serious consequences for the patient,
• the issuing of hospital-appointment cards to persons recently deceased in that hospital
• an allegation that a recently deceased patient was left on a busy ward for many hours
• an allegation that there was a failure to undertake a post-mortem, following a serious fall from a bed in ward,
• an allegation that an un-prescribed dosage of medications was administered to a very ill patient over a period of days which had the alleged consequence that that patient could not communicate verbally with her family during the last days of her life,
• an allegation that a recently deceased patient was offered a cup of tea by an attendant who had not been informed that the person had died.
• an allegation that an elderly women left for just one week in a respite care home arrived back to her family with painful sores and under-nourished.

I could go on.

The main theme running through the majority of hospital and care home complaints to my Office seems to revolve around poor communications, an issue that to my mind is at the core of Hospice friendly Hospitals initiative. That can be communications failure, communication attitude, communication method or simple defensiveness. Yet as everyone in this room here knows communication is one of the foundations of good health care and that includes everything from the friendly chat of a nurse with an apprehensive patient; to the passing on of a traumatic diagnosis; to vital information from a doctor to a patient about how they both can manage the patient's illness or disease; to dealing with the concerns of relatives and others about a patient.

I recently dealt with a case where a lady complained to my Office that she was not informed of the death of her father until she rang enquiring about his condition.

She told me that she had explained to staff at the hospital that there was a communication problem between herself and her sister and that her sister would not inform her of her father's death. She told me that she would have liked to have been present in the last hours before the death of her father. Her sister and her family were present and the complainant was later present on the ward with her father but after he had died.

In its initial response to my Office, the hospital said that the patient's family was in attendance at the time of his death. It said that, as agreed with the patient, a particular daughter was documented as next-of-kin. The hospital said that, as this particular daughter was present at the time of her father's death, the hospital fulfilled its obligation in ensuring that the agreed next of kin was aware of the patient's death.

During our examination of the complaint we noted that the complainant's name and telephone number was recorded on the Admission Sheet. So we asked the hospital why this entry was made, by whom, and for what purpose. We wanted to know this because it leant weight to the complainant's claim that she had asked staff to notify her of her father's impending death.

The hospital couldn't answer any of the questions posed but did accept, on the balance of probability, the complainant had spoken to a nurse but could not verify what was said as there was no written record of this. However I was able to tell the complainant that the hospital now accepted that she had given her details to a member of staff and the complainant was happy to let things rest there.

This might seem like a simple matter, but the fact remains that the non-recording of a critical personal request by that lady, led to her absence from the bedside of her father as he died, notwithstanding other family issues that clearly complicated matters as well. He also was deprived of her company. Bad record keeping impacts negatively on the quality of patient care, most obviously in relation to actual medical treatment but also in relation to the intensely personal communication issues around the dying and their families.

I deal with many individual complaints. The best outcomes are where individual complaints can lead to systemic improvements with benefits for all. Laced throughout some of the hospital complaints I have dealt with, are recommendations which touch on much of the issues in this and other reports. But chivvying and recommendations can only go so far; what is needed as a sea change in the attitude of hospitals around the issues of death and dying. It shouldn't come as any surprise to hospital staff that people actually do die in their hospitals but they do and in their thousands. Yet sometimes, such is the state of unpreparedness of some of those hospitals to cope with that natural and common event, that one would imagine otherwise. How difficult is it to devise a system whereby the tea lady is made aware of death on a ward? How difficult is it to devise a protocol for the collection and the return to a family of their relatives belongings? How difficult is to have mortuary facilities that are not shocking in their clinical and literal coldness? How difficult is it to have simple tea and coffee facilities made available to relatives in the pre-dawn as they await the death of a patient?

These are not huge logistical issues such as the creation single bedded rooms in hospitals that are already stretching at the seams; these are the stuff of simple humanity, of a tiny imaginative leap into the souls of the dying and of those who surround them. It is the golden rule, do unto others. Many hospital staff leap to that challenge time and time again, despite formidable obstacles that are not of their making. The challenge implicit in this report is a challenge to the system at large to accord full respect and full dignity particularly to older people as they reach the end of their lives. It is not enough to simply provide a roof over their heads and food; this report outlines a holistic approach to their care. Which all of us have a moral duty to take on board.

My Office can help to bring about systemic change through the examination of individual complaints and our thinking will be informed by this and other reports as we deal in particular with complaints relating to care of older people. I am hopeful that new standards to be set by the Health Information and Quality Authority will also improve overall standards of care.

So, in conclusion I commend this ongoing project. I hope that your work and the work of my Office can combine to bring successful outcomes for all of the people that we collectively serve.

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