REMARKS BY PRESIDENT MCALEESE ON THE OCCASION OF THE ST. FRANCIS HOSPICE ANNUAL LECTURE
REMARKS BY PRESIDENT MCALEESE ON THE OCCASION OF THE ST. FRANCIS HOSPICE ANNUAL DR. MARY REDMOND FOUNDATION DAY LECTURE
Tá an-áthas orm bheith anseo libh inniu agus muid ag céiliúradh an ócáid mhór seo. Ba mhaith liom mo bhuíochas a chur in iúl daoibh as an gcuireadh agus as fáilte a bhí caoin, cneasta agus croíúil.
My thanks to Ethel McKenna for her kind invitation and to each of you for your warm welcome. I am delighted to have been asked to give the 6th Annual Dr. Mary Redmond Foundation Day Lecture.
Ireland, along with many other countries, is in the throes of a period of economic turmoil. The worries and demands of this strange and difficult time are absorbing. We see it as a time of unwelcome change which threatens a remarkable quality of life that we had become used to over these past few years. We know we will be sorely tested during the weeks and months ahead as our individual and collective coping skills are challenged to adapt to this litany of bad news. In our understandable preoccupation with so much rapid change and volatility, it would be easy to forget the predictable things that simply go on quietly and inevitably, day to day, hour by hour, slow minute by slow minute - the chronic illnesses, the terminal illnesses, the serious accidents, the dying and the deaths that men, women and children are facing into, now, in this moment and all the moments ahead. With so much focus on how governments and institutions are responding to crises, it might also be easy to forget the phenomenal power we as individuals and as community bring to bear on life, a power for good and a power for change.
Those who face chronic or terminal illness, whether as patients, carers, family or friends, face tough realities daily. Many find a strength and courage they never thought they had to deal with, fears they hoped they would never have to face. Many find support in the help and care and kindness of others. Many fight anger, anxiety, fear, pain, resentment, reduced circumstances, loneliness, depression, sadness and isolation. They all need to know that we are not so preoccupied, so self-absorbed that their tough lives are overlooked. In this place are gathered people who have made it their business, their passion and their vocation to care and we are also gathered in the name of hospice care in Ireland’s great champion, Dr. Mary Redmond. If ever there is a classic culture-changing example of people-power then the hospice movement is it. The concept was not germinated in a government lab, it was not computer-generated, it came from the lived experience of dying and of death. It came from diabolical experiences and grace-filled experiences.
It came from a determination that, inevitable though death might be, harsh deaths are not inevitable. With a proper focus and deep sensitivity there is a mix of professional and voluntary endeavour that can bring real hope to lives lived in the shadows of death or chronic illness. Dr. Mary Redmond, the indomitable woman who has helped put hospice care on the Irish agenda, is a brilliant and distinguished academic. Yet she came to this issue, not out of something learnt in a book or a library, but out of something learnt the hard way, from life and from the death of a loved one.
Mary’s doctorate ironically is in law not medicine and it was sadly the direct experience of her father’s dying and death some twenty-five years ago that opened up to her the many problems in this hushed but far from calm world of serious illness and dying, where control over one’s personal circumstances can seem to ebb away so quickly. Mary’s family, like a lot of others, found themselves suddenly struggling through the confusion and disarray that are the unwelcome companions of serious or terminal illness, the trudging to hospitals, the waiting for appointments, the search for appropriate and timely care, the limitations and sometimes the indignities of aspects of our health care systems.
Eventually the family found a safe and peaceful haven in Our Lady’s Hospice in Harold’s Cross. They had experienced the worst and they had, in the end, found the best. From that journey through chaos to calm, Mary emerged profoundly inspired by what she and her family had witnessed in Harold’s Cross. She has made it her business ever since to work to ensure that a similar level of reassuring, customised care could be made available to far more patients and their families. She was the driving force behind the foundation and early growth of the Irish Hospice Foundation - and making her vision a reality involved all those qualities of practical intelligence and selfless ambition in the cause of a larger purpose, that she possesses. She also helped to release that nationwide people-power that has given such surging energy and vindication to the hospice movement. One of the end results was the setting up of this wonderful St. Francis’ Hospice.
The initiative of the Lecture Series in Mary’s honour is aimed at maintaining not just a spotlight on the work St. Francis Hospice and the ever-developing work of the Irish hospice movement generally but, just as importantly, it is about generating and sustaining a lively conversation around our country, in our families and communities about how we want to live with illness and how we want to die. That conversation has the capacity to change things and to keep on changing things. It arises out of what we observe, what we experience and it is no accident that so many hospice volunteers and funders are people who have had direct experience of suffering and death. They know from first principles that there are bad ways, good ways and better ways. It is the distilled wisdom of their observations, their experience allied to their love, compassion and insistence that we do our holistic best, that infused the culture and ethos of the hospice movement. This is self-help at its absolute best. The hospice movement has introduced us to radically better ways and to the possibilities for making them even better still. At the core of the best ways is a way of looking at the patient which sees him or her as more than just a medical problem in need of medical treatment.
The hospice movement insists on a vivid and all-embracing humanity which works to take away the dread, to create calm, to reassure, to manage pain, to enhance dignity, to acknowledge the uniqueness of that individual person who is the patient and to listen as he or she articulates their needs and wishes. It is about helping people to live well even with the most distressing illnesses, helping them cope, helping their families cope. It is about living well and comfortably, right to the end.
Research tells us that most people want to hold on to their independence for as long as possible, to stay at home and to die comfortably at home if possible. It has not always been possible and, indeed, for the majority of people, life will end among strangers, in a hospital bed with intrusive noise and bustle all around. Hospice care set out to change that culture first of all through dedicated hospices, through hospice support at home and, more recently, through initiatives designed to mainstream the hospice culture in general hospitals.
The concept of hospice care is still in its infancy. It is only fifty years ago since that other great hospice champion, Dame Cicely Saunders, observed that “many patients feel deserted by their doctors at the end” and advocated a system where “the doctor should remain the centre of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass and to bring hope and consolation to the end”.
It is only forty years ago since Dr. Elisabeth Kubler-Ross, often referred to as the "Mother of Hospice" for the United States, famously identified the five stages of coping with dying now so well known - Denial, Anger, Bargaining, Depression and Acceptance. Palliative medicine has grown from a place on the sidelines to a vital place today at the centre of patient care, thanks to the work of an expanding band of advocates and enthusiasts who believe that we each matter right to the very last breath.
In a recent report by the European Parliament, Ireland was ranked second in Europe for the provision of palliative care services. How we got to such an elevated position is no great mystery nor was it an accident. It was the investment of groups like The Irish Sisters of Charity, of organisations like the Irish Hospice Movement, of the army of volunteers and fund-raisers, and the community solidarity and support which is one of Ireland’s greatest resources
We are entitled to take pride in the progress our country has made in palliative care but we are not entitled to take time off from the work of making even more progress. And, in this period of recession, it is worth reminding ourselves that the pioneering Home Care Service was started twenty years ago, in a time too of recession with a portakabin in the grounds of the Capuchin Friary as its very humble starting point. Today it is such a fine service that lifts the breaking hearts in many a home and its reach grows wide year on year, covering more of the country and more illnesses with its comfort blanket of professional hospice care in our own homes. It was St. Francis of Assisi who wrote almost eight hundred years ago in his famous Canticle of the Sun,
“Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape.”
It is true that there is no escape from death for any of us but it is possible to escape a cold embrace. It is possible to create a warm embrace that nurtures and nourishes us and our families through the process of suffering and incapacity that accompanies chronic or terminal illness. These things do diminish our bodies by their nature but the ethos of hospice insists our spirits need not be diminished too and our fragile bodies can be helped through the worst of anguish with the very best of care.
Deep in all our hearts is an unspoken fear of death, an unspoken hope that when it comes it will be in the words of an old Irish prayer,
Bás gan chrá Death without torment
Bás gan scáth Death without shadow
Bás gan bhás Death without death
Bás gan scanradh Death without dread
Bás gan dolás Death without sorrow
With the help of the hospice movement, the rapid development of the new science of palliative care and the many new treatments that have extended life and enhanced life for those coping with serious illness, there are people who are able to face tomorrow without that dread, that torment, that shadow. We may still be a long way from death without sorrow but death without suffering is no longer a vain hope too far. That it is, is thanks to Dr. Mary Redmond, to the Irish Daughters of Charity, to the Irish Hospice Movement and to all who will carry that work into the next generation and the next, pushing for improvement through good times and bad because death visits us in all times and circumstances.
The gift of a good death is the surest sign of a community that truly values human life. Importantly though it is still the gift of community to its members. It would be great to live long enough to see it transformed into, if not a right, then a reasonable expectation. To all those who introduced us to the possibility of a good death, who brought that transcendent hope into our lives and into the dying and deaths of our loved ones, a sincere thank you and a strong encouragement to keep on this difficult road, for the journey has only begun and there is still a long, long way to go but two shortens the journey.