A Matter of Life and Death by Senator David Norris
Ladies and Gentlemen I would like to say what an honour it is for me to have been asked to deliver the annual Mary Redmond Foundation Lecture here at the St. Francis Hospice in Raheny. It was also a bit of a “joult” as they say. The reason is because when I agreed to do this I was abroad, and communication was a bit sketchy, as a result of which I thought I was just saying a few words at some kind of annual general meeting. It was only a month ago that I picked up the folder and realised that it is actually the rather more intimidating delivery of a lecture. This could have been a heart stopping or indeed end of life experience but I am seasoned in these matters. A couple of years ago I was invited to say at a few words at the opening of the Sir Ernest Shackleton Autumn School in Athy. Again I was abroad, came back, picked up my brief, into the car and off down to Athy. About half an hour from my destination I pulled into the ditch for a pit stop and when I climbed back into the car decided to open the folder and read the contents in detail, only to discover that I was less than an hour away from delivering the Sir Ernest Shackleton Memorial Lecture. The whole thing had ‘morphed’, to use an ugly word, behind my back from being a few well chosen sentences to a full formal talk. I felt rather like P.G. Woodhouse’s Gussy Fink-Nottle on the brink of delivering his disastrous speech on Prize Day at a girl’s school. However luckily the Shackleton’s were old friends of my mother’s family, and I knew all the inside stories, so between that and my interest in Arctic exploration I was able to fill the hour, and perhaps because of the nervous electricity with which I delivered it my effort was rewarded with thunderous applause. This time I had a month’s grace. After the initial shock wore off the first thing I experienced was an increased feeling of the honour that had been offered me and also my inadequacy. I am not sure that I have the qualification to lecture a group such as this on an aspect on human life of which they have infinitely more experience and probably wisdom than I have. However when you get to 65 you are bound to have some experience of death, in different forms and different locations experienced by acquaintances and loved ones with varying degrees of comfort. It is on the basis of this experience that I salute Dr. Mary Redmond. She is as you know a distinguished lawyer and banker. Her degree is not medical, but she has had a very substantial impact on the medical world in particular in the area of end of life care. I am especially pleased that through the Irish Hospice Foundation, which she was largely responsible for starting in 1986, she and her helpers raised 1.6 million for what I suppose is the mother house of all Hospice facilities Our Lady’s Hospice in Harold’s Cross. However it did not stop there, and as a north sider I am naturally grateful to her for her interest in extending these facilities to the north side, first through assisting with the funding of a Hospice Home Care Service on the north side which was run from a portakabin on land donated by the Capuchin Fathers in Raheny. Further funds were added and the service developed into a day care centre and eventually the opening of this remarkable and welcome facility St. Francis Hospice. I have called my paper ‘A Matter of Life and Death’ because first of all this is a cliché which we trot out to mean something very important in our lives. Underneath however lies something more significant. The work of the Hospice is literally a matter of life and death because, as I understand the philosophy, it is to permit those in whom the onset of death has been recognised to live out the part of their life that is left to the fullest possible extent. This may seem obvious now, almost a developing human right, but it was not always so. I remember my first experience of a Hospice when a perky little waitress who used to serve in the Buttery in Trinity College called Angela contracted cancer. She was diminutive, liked a bit of glamour, had a commanding personality and flourished scarlet as her favourite colour both in her lipstick and in her dizzyingly high stiletto heels. When she contracted cancer I think she was pretty crest fallen about this. However she managed to get into the Hospice which was then a relatively new development. I had never been in it until a few of us visited her there. We went in expecting a morbidly pious atmosphere, … institutional, grim and even the curtains drenched with sorrow. I at least was astonished to discover the place full of good cheer and yes strangest of all of life, good rich life, continuing. Angela was there, she could still smoke, she could have a glass of gin, she could play cards, she could put on her lipstick, she could still totter round in her high heels and receive her friends regally. This was an eye opener for me. Subsequently another friend of mine who had been a most vivacious hostess also entered the Hospice and it seems quite inappropriate though I have to say it – I almost envied her the attentions both of a beautiful golden retriever dog which ambled cosily around and also of a handsome young masseur. For some reason the final person of whom I think is also a woman. She had been the centre of a circle of lady-like old friends of my late aunt who were by then beginning to get on in years. She knew exactly how their lives should be managed, where to get grants or pensions, free fuel, legal advice, as well as medical wisdom both main stream and alternative and she organised a wonderful word of mouth exchange programme of fashionable clothing only slightly worn including designer names such as Schiaparelli among the old dears. One day I was visiting her with my aunt and I noticed a certain quality about her skin. I said to my aunt after we left, I am afraid Sheila is very ill. It was an acute diagnosis. She had quite an aggressive form of cancer as she discovered later that week. She went into an expensive nursing home in south county Dublin where every luxury was supposed to be provided. Every luxury that is, except the most needed, genuine human care, affection and attention. This commanding woman who had done so much good for others was reduced to tears in a phone message to me. I went in to see her and she explained that it was indeed very luxurious, the furniture, carpet, bedding, medical equipment, all was the very latest design and the best quality. However her bell often went unanswered for stretches of half an hour and more. She fell on the floor, her basic needs were not adequately met, I need go into no further detail except to say that she was left deeply distressed. She begged her doctor to recommend her to the Hospice, but the doctor, knowing better as doctors do, dillied and dallied and gave the opinion that it wasn’t quite time yet. Sheila knew bloody well that it was. When she contacted me again I got on to the Hospice in Harold’s Cross. I had done a little bit of fundraising for them and spoken at a few social events in the Hospice, done a few turns so to speak. The Director had very kindly said to me that if I ever needed the services either for myself or my beloved aunt, just to lift the telephone. This was like a get out of jail free card in monopoly, and I used it instantly. Sheila got in. What a transformation. She was human again; she had resumed her make up, she had her nightly glass of grog and her friends came in to play cards with her. In other words she re-emerged into a life that had sufficient quality for her to wish to go on. For that I am deeply grateful to the Hospice movement. These stories illustrate I think one of the fundamental things about the importance of the work the Hospice does. And the first of these is the centrality of the patient. It must be recognised that dying is a very intimate and personal experience and that it is the patient himself or herself who owns this process of dying and to whom reference must always be made, and their wishes ascertained during this process. Thirty thousand people die in Ireland each year and according to your own statistics in the Hospice movement nearly 80% die in hospital, most of them in wards containing five or six other people, even though the overwhelming majority of them would wish for the dignity of privacy, to be left in their final moments with their family, their spiritual advisor or their very close friends. This is why I very much welcome the development by the Hospice Foundation of the Hospice Friendly Hospitals Programme intended to ensure a consistent, high quality approach to end of life care in hospitals under the four headings of Patient Care, Support for Families, Staff Training and Support and finally an Integrated Hospital Approach. The need for such was highlighted just before Christmas by an article in the Irish Times in which Caitriona Crowe, partner of the painter Padraig O’Faolain, who I knew and who lived just around the corner from me in Mountjoy Square, told how he had died the previous year. She recounted how he was suddenly taken ill and was brought by ambulance to one of the big Dublin hospitals. He was put into the Intensive Care Unit where at first he seemed to be recovering. However within a matter of hours he took a sudden turn for the worse and resuscitation procedures began. Caitriona was put into a small uncomfortable room. Outside the door of this room she could hear a drunken couple falling around and shouting. She says this was probably the last sound Padraig heard as he died. According to this article “A young doctor entered the office and told her her partner was dead. She was brought to the room in which hospital staff had tried to resuscitate him. Eventually a priest, who she had not asked for, appeared by her side. He kept referring to her as O’Faolain’s daughter – “They hadn’t even briefed him” – she recalls sadly. Two orderlies came to bring his body to the mortuary, laughing and joking as they brought his remains away. Almost a year after the experience Crowe is still in mourning, but she is also deeply traumatised by the lack of “ordinary human decency” in what was already a harrowing experience. “Nobody there had any training as to how to deal with someone who is suddenly bereaved. Hospitals don’t do death” she says. “They see it as a failure, not a natural thing that happens”. The importance of understanding imaginatively the role of the patient is underlined by the fact that, 80% of people now die in hospitals as compared to the beginning of the 20th century when this was less than 20%. In other words it has become the general experience even though the overwhelming majority do not wish this to be the case. In the words of Carol Coulter in a recent article in the Irish Times “There is a serious mismatch between where people want to die and where they actually die. As an aside I was greatly struck in the aftermath of the recent tragic earthquake in Haiti by the example of two remarkable Irish women Dr. Louise Ivers and Ms. Gina Heraty. They had left comfortable and secure employment in Ireland in order to look after the sick and the disabled and in Ms. Heraty’s case children abandoned either simply because they were not wanted or because they were suffering from intellectual disability, Cerebral Palsy, Scoliosis or other crippling and disfiguring ailments. Gina Heraty in particular said that it was just an lucky accident that we in Ireland had such privilege. We ourselves could just as easily have been among these neglected and despised people. Everyone she said every child has the right to be hugged, the right to be spoken to and the right to be accompanied on their journey through life. This seems to me to be the essence of the Christian message and to fit in perfectly with the ideals of the Hospice movement. Their actions and words chime wonderfully with the prayer of St. Francis with which I am sure you are all familiar. “Oh Divine Master, grant that I may not so much seek to be consoled as to be consol To be understood, as to understand; To be loved, as to love; For it is in giving that we receive – It is in pardoning that we are pardoned; And it is in dying that we are born to eternal life.” While we are on a spiritual topic let me say that my views are sometimes at variance with those of the Vatican and so I was concerned when I saw a headline in the Irish Times of Thursday February the 4th this year saying “Church critical of excess pain relief for the dying”. But I don’t believe in judging people unheard, so I read through the article carefully, and to my surprise and pleasure I found that I could agree with a great deal of what was said. The first paragraph was a little worrying “Medical staff who over administer pain relief to dying patients could be denying them a “good death”, the Catholic Church in England and Wales had said. However it went on to say that the lack of sufficient pain relief could also cause considerable physical, emotional and spiritual suffering. Their point was that rendering patients unconscious or semi conscious towards the end of their life through the use of drugs might have the effect of depriving them of the chance to say goodbye to their relatives or the comfort of having fellow believers joining them in pray or the reading of scripture. They added the caveat that praying over the patient should not be intrusive or a last ditch attempt to convert. This seems to me to be a civilised attitude because it appears at least to respect the wishes of the patient. If the patient is a believer he or she may make a choice as to the relative level of pain control and consciousness to allow them to satisfy their own spiritual need. I can but support this view. In this context I was amazed to read in the newspaper in the last few weeks that one of the difficulties of pain control is a scarcity of morphine although this does not apply particularly to western countries. I find this absolutely astonishing. That we should suffer from morphine shortages to comfort the dying and ease their passage on a planet that is drowning in a sea of heroin is to me an indescribable irony. Moreover not only does it not bother me that the use of these strong narcotics may end life but I believe that people have a right to die with dignity, at a time and place and in a manner of their own choosing. I recall the case of a doctor brought before the Medical Council in Britain ten years or more ago for helping to end the life of a woman who was living in agony as a result of an extreme case of septic arthritis. As I recall the account she was covered in sores, was in constant agony not for days or weeks but for months and years. I cannot understand the arrogance and impertinence of people who impose their own religious perspective on others in these circumstances. Of course one must ensure this is a rational decision taken independently of any pressure from family or friends and that it is professionally accomplished. There are no doubt difficulties. Switzerland I know is beginning to experience resentment at what they call death tourism and in particular in those circumstances where although one partner is terminally ill and in pain the other partner also chooses to die with them to avoid loneliness. Nevertheless I believe this is the right of every human individual. I feel that I am myself fortunate in having a strong but idiosyncratic Christian faith and being a regular church goer. The value of this was reinforced within the last year when a very old friend from school days contracted a virulent and unpleasant form of cancer. He had a similar kind of faith to my own and I observed how it gave him the gift of infinite courtesy, patience and courage. To the external observer at least this had the effect of sustaining him through to the end. Like myself he was a strong church man of the high church persuasion. Indeed although gay he seemed at times on the edge of slipping over to Rome. I joked with him that I was tempted to bring in a few copies of the Church of Ireland Gazette to restore the balance. It was the only time a look of real pain appeared on his face, “Oh for God’s sake please don’t” he said in an agonised voice. I compensated for this teasing by telling him an absolutely filthy joke I had been told rather to my surprise by an elegantly dressed young lady barrister. He responded with peals of laughter. It was the last time I heard him laugh, and although others might find it inappropriate I am glad I did it. Laughter is one of the great human characteristics and a real comfort in times of distress. Within a few days he was dead. I noted in the Bishop’s statement that it referred to “a good death”. This put me in mind of a wonderful story by the late Mary Lavin called “A Happy Death”. In this a shrewish and business-like woman who had hen-pecked her weak and somewhat romantic husband mercilessly in the latter days of their marriage was surprised to find that he actually was dying. In hospital she noticed other patients receiving presents of books, fruit, chocolates etc. At this stage of his illness all these were quite inappropriate. Since she saw the world in a materialistic way, however, she heaped the unfortunate spouse’s sick bed with these inappropriate items. Then she noticed that another patient who had been blaspheming cursing and railling against the church had grown quiet and relaxed. She overheard one of the nuns saying how wonderful it was that God had vouchsafed him a happy death. This of course was the next item. She thought she could procure for her husband so she tried, as he slipped from consciousness, to get him to repeat an Act of Contrition whispering into his ear “Oh my God I am heartily sorry, I am very sorry”. He stirred, hearing some of these words and thinking that she was apologising for her cruelty said “But there is no need no need to be sorry, I’m not sorry, not sorry at all, I always loved you” and then he died. The widow was inconsolable. She could not understand how God would not permit her to give her husband the gift of a happy death, sadly oblivious of the fact that this was exactly what he had obtained. Death can come in many guises and may indeed as the Bishops state be a shock especially to the relatives. My first direct encounter was with my mother’s death. She died over 40 years ago just after Christmas. I found her dead in her bed in the morning, in a house full of Christmas tree decorations, greeting cards and the smell of cold turkey, depressing enough at the best of times. I had to confront the physical realities of death by being required to help the doctor to straighten her body as Rigor Mortis was setting in. This was an agonising moment for me. The absence of some one greatly loved who had been so immediately present the previous day seemed to undercut all sense of reality. How could the newspapers arrive, the number 18 bus still run and other people happily set out for post Christmas walks. I had for a while a horror and a fear of death. My aunt, her unmarried older sister, who in those days would have been called a spinster, gradually took over the emotional role of mother. I had always loved my aunt who was a stylish woman of remarkable intelligence poise and courage. My affection for her took on a new intensity. My mother was comparatively young when she died and nowadays would have lived on for many years as a result of a comparatively simple procedure involving the replacement of a heart valve. Her sister however lived on to 103. When she was 90 I moved in nearly full time to her house in Ballsbridge but at 95 she had a series of falls and went into the wonderful ambience of the Alexandra Guild House. There she had her own small suite of rooms with her own furniture, private bathroom and a bay window looking out on a herbaceous border. I visited here there every day until she died at the great age of 103 having fulfilled her ambition to live in three centuries, the 19th, 20th and 21st. When she died she appeared to do it not once but twice. I had been allowed to move into another room to be with her pretty well all the time. I was reading to her on her birthday when she coughed gently and stopped breathing. She turned an unpleasant brown colour and I called the nurse who examined her, believing her to be dead. However a minute later as some adjustments were being made she emitted another cough, and within half an hour she was sitting up having a cup of tea and delighting me with some mildly scandalous stories of village life in the midlands before the first World War. But this was the last rally, it was clear that now she was dying in earnest. I sat with her for a week throughout the night and read to her passages from the Bible some of the beautiful collects from Cranmer’s Prayer Book, “O God, who art the author of peace and lover of concord, in knowledge of whom standeth our eternal life, whose service is perfect freedom; Defend us thy humble servants in all assaults of our enemies; that we, surely trusting in thy defence, may not fear the power of any adversaries; through the might of Jesus Christ our Lord. Amen”. I read this repeatedly like a mantra. I also told her of a prayer of my own. I had adapted this from a prayer of the Rosary in the Roman Catholic tradition “Holy Mary Mother of God be with us now and at the hour of our death Amen.” Preparing for communion I always say to myself “Jesus be with me now and at the hour of my death Amen”. I told this to my aunt and she found it very comforting. One night at four o’clock when she seemed to be either asleep or unconscious I said “Well I expect you are tired now so I will stop for a while”. She opened her eyes and murmured “No please go on” So I did. Ten minutes before she died she regained consciousness and said very gently “My love to them all”. These were her last words. This was in my opinion a genuinely happy death. I contrast this with the last years of a glamorous cousin of hers who was greatly indulged by her father. She married a very wealthy Englishman and lived in a beautiful Jacobean manor house in Hampshire. She used to come over for the Horse Show and land on other elderly cousins who had a nice house in Cross Avenue. She had the appearance, manner and selfishness of Jackie Collins in Dynasty. One year the cousins in Booterstown were unable to accommodate her and she announced by letter that she would stay with my aunt. True to character my aunt told her that she would not, but that she would be welcome for afternoon tea. After my aunt’s death I visited her in Hampshire. She had sold the manor and moved first into the Gate Lodge where she had a couple of faithful retainers, but by the time I visited her she was in a nursing home. I bought a huge bunch of freesias in London and made my way down to see her. The nursing home was certainly luxurious but I discovered that because of her ill temper she was confined in the secure section. To make conversation I said what a lovely place it was. “You think so” she replied. “Then you should try it yourself”. She threw the freesias on the floor. When I suggested putting them in a vase she said “the servants will do that”. She referred to the nurses as the servants which explained her unkempt appearance and the strong smell of old ladies pee. The nurses evidently didn’t like being treated as servants and left her very largely to her own devices which cannot have been very entertaining. But with all her money unlike my aunt she did not have a happy death. Most people of course are not so difficult and are fully entitled to be treated whatever their financial position with dignity. Insensitivity can sometimes be unintentional. I am an admirer of the integrity and devotion to her job of the present Minister for Health although I disagree fundamentally with some of her ideological positions which have resulted in what I see as a two tier health system. During the discussion of the Nursing Home Bill in the Senate she referred a couple of times to pocket money for the elderly patients. I pointed this out in my contribution and gained a retraction from the Minister. I felt that people who had achieved an adult life whose end was now drawing close were still entitled to be treated as adults and not patronised. This attitude is sometimes encountered also in hospitals and nursing homes where the staff address their remarks largely at relatives rather than directly to the patient, a phenomenon the BBC recognised in the title of their programme some years ago “Does he take sugar?”. That is why I applaud the extension of the ideals of the hospice movement into our hospital and the four principles annunciated in the “Draft Quality Standards for End of Life Care in Hospitals”. These four standards are (1) patient care, (2) support for families (3) staff training and support and (4) an integrated hospital approach and I welcome very much the statement of Helen Donovan the Standards Development Co-ordinator of the HFH Programme “End of life care is complex. Hospitals must take into account not only people’s needs but their express preferences, their cultural values, religious beliefs, spiritual and sexual orientation. It involves complex questions and issues – advance care, planning, preferred place of care, organ donation, wills and power of attorney, these draft standards have at their core the need for greater engagement by hospitals around issues of end of life care. They identify the essential elements that need to be in place to ensure a consistent quality approach to end of life care across the hospital setting. I am particularly pleased that Ms. Donovan includes sexual orientation in this catalogue. It is well known and certainly within my experience that because of the absence of the recognition of same sex partners which I hope will come shortly in Government legislation, it has been quite normal in Ireland for partners of many years standing to be replaced forcibly at the death bed, funeral and distribution of assets post-mortem, by a family from which the dying person may well have been estranged for years. It is now recognised this is grossly wrong and immoral. We also have to recognise that the dying may well have different priorities and a different view of life to those of us still actively healthy. My experience has shown that this is sometimes true of people with Aids. I remember in particular one striking young man who contracted the virus. Academically brilliant, successful in business he became weak and skeletal. I remember vividly visiting him one day to find him radiant. He had just discovered pampers and from being confined by incontinence he could now totter across the road, nibble at a lunch in the local pub and entertain his friends in relatively normal surroundings. I thought this a triumph of the human spirit. But it can take people in different ways. I also recall an anguished telephone call from a young man who wanted to talk to me because he was contemplating suicide. He had Aids. Ah, I thought, this is the problem. But no it wasn’t. He said “I just told my mother she was an old bitch and I never liked her, I ran up 36,000 pounds on my credit card and I had my cat put to sleep by the vet. Now they have put me on the triple drug therapy and it looks as if I am going to live. I can’t bear it. I think I will have to kill myself”. My first instinct was to laugh, but I smothered it, and it certainly showed me the variety of human response to the experiences of living and dying. I have no problem whatever from people deriving entertainment and indeed laughter in the midst of what I hope will be genuine sorrow when I depart and I shall probably succeed in providing this as I have arranged a most elaborate funeral in which I shall have a full Haydn Requiem, lots of Victorian hymns and a jazz band at the west door to see me off down to my own native bog where I shall be laid to rest among my ancestors. And I shall have the last word because I am making arrangements to have holes bored in the side of the coffin and speakers inserted. I have often wondered at funerals what the dead would say if they had the opportunity. At my funeral the congregation will find out. Moreover I applaud the late Danny Cummins for his cremation music when he chose that splendid song “We will make a bonfire of our troubles and watch them blaze away”. I now believe there is nothing to be feared in death. We are after all as James Joyce said “Merely an actualisation of the possible” and we shall return to that place from which we came before our birth. I think it would be appropriate to end with that majestic poem by the great Anglican divine and poet John Donne Death Be Not Proud. Death be not proud, though some have called thee Mighty and dreadfull, for, thou art not soe, For, those, whom thou think’st, thou dost overthrow, Die not, poore death, nor yet canst thou kill mee. From rest and sleepe, which but thy pictures bee, Much pleasure, then from thee, much more must flow, And soonest our best men with thee doe goe, Rest of their bones, and soules deliverie. Thou art slave to Fate, Chance, kings, and desperate men, And dost with poyson, warre, and sicknesse dwell, And poppie, or charmes can make us sleepe as well, And better then thy stroake; why swell’st thou then? One short sleepe past, wee wake eternally, And death shall be no more; death, thou shalt die.