Dorothey Ley


This book is lovingly dedicated to my dearest friend, Donalda McGeachy, and to all her caregivers.


Spiritual care lies at the heart of hospice. It says we are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your own meaning in your own life -- your way. We will comfort you and those you love -- not always with words, often with a touch or a glance. We will bring you hope -- not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there.

Dorothy Ley



Dedicated to the memory of Dorothy Ley and Iris Man: two women of extraordinary courage, compassion and faith. Their lessons will live on through their words, their example and our memories.

Harry van Bommel



Preface

Harry van Bommel


When Dorothy Ley and I agreed to write this book I predicted, "This is going to be fun." Her reply: "It better be or it isn't worth doing," and then she laughed. We were seated in her hospital room several days after she had received another round of chemotherapy for her cancer. Her mood was uplifted yet peaceful. There were things she wanted to get done but there was also time to just chit chat about family, politics and the summer of '93.

In 1992 I first asked Dorothy to write a book about her views on palliative care. I knew of no one else in Canada who had her unique qualifications to write such a book. There are many leaders in the field of palliative care but only one, that I knew of, who had the perspectives of being a doctor (haematologist, oncologist and palliative care pioneer), a family member who cared for loved ones at home, and a patient with a diagnosis of a terminal illness. Dorothy Ley had all these experiences and, therefore, a unique perspective to pass on to other patients, family members and palliative caregivers.


Originally the content of the entire book was to be Dorothy's. Because of her illness she was unable to complete a draft of the book and, therefore, I have completed it for her in what I hope would be the spirit of her own writing. This book is not exactly what Dorothy and I envisioned when we began but it does serve as her advice to us on what she felt was most important for successful palliative care to exist and flourish in Canada. The book is also a tribute to her as a pioneer in the field of Canadian and international palliative care. In taking care of others we must not forget to take care of each other and remember the leaders of our philosophy of palliative care.


The biographical sketch of Dorothy Ley in this book is important because I believe that people must get to know the person behind the professional, even if only briefly. This is not only true of Dorothy, but of all the leaders in the field of palliative care. We must respect the professionals, volunteers, patients and family members who have been instrumental in developing palliative care in Canada. At the same time, however, we must recognize them as people who need the same kinds of emotional, spiritual and informational supports that all people involved in caring for people who are ill need. Putting them on a pedestal to admire or criticize is unfair to them and unfair to us. Unfair to us because putting people on pedestals permits us to avoid the responsibilities of accomplishing the same tasks with the same compassion and dedication. When we are all on level ground we can work together. This benefits us all individually and benefits society and palliative care as a whole.


As a writer I have promised myself not to work on books with other people because the experience is usually one filled with frustration, ego battles and last minute compromises to the integrity of the text. None of that has occurred with this book. I thoroughly enjoyed working with Dorothy to provide a useful educational tool for palliative care providers primarily but also for everyone interested in palliative care. I also enjoyed our walks around her beautiful home on the shores of Ontario's Lake Simcoe, our chats in her wood panelled office-library about each other's families, our discussions about past successes and our hopes for the future. Her insights are practical, direct, humorous, colourful and inspirational. Her experiences lend a practicality and a credibility to this work that is hard to find elsewhere. Best of all, we can learn from someone who actually practiced what she taught. She was a very human role model to physicians, other health care providers, family members and now to patients. I am grateful for this experience.


Her book is divided into three parts. The first part includes the Introduction and the two chapters on the pillars of care and Dr. Ley's personal comments to people within palliative care. Her words are a compilation of various speeches and articles that she wrote over the years about the importance of providing physical, emotional, spiritual, and informational supports to people with a life-threatening or terminal illness and their families. They are her words supplemented by information collected during our conversations together. Part 2 describes some hospice care success stories including the excellent hospice care that Dr. Ley received in her last months of life. Part 3 is a collection of information that readers may find helpful in understanding both Dorothy Ley and her message.


Her book is called The Heart of Hospice which she saw as the often forgotten spiritual element to palliative care. In a real sense, her belief in, and promotion of, palliative care and her experiences as a doctor, family member and patient put her at the heart of hospice as well -- a well deserved place in the history of this young movement in Canada.


NOTE: One of Dorothy's friends found an old, 3.5 x 5 inch notebook that Dorothy must have used decades ago to collect favourite quotes. She entitled her notebook, "Happiness Must Be Earned." There were one hundred quotations in all by many different authors touching on subjects of love, death and dying, character, spirituality, philosophy, loneliness, memories and nature. There were several writers quoted more than once including Joyce Kilmer, Edna St. Vincent Millay, L. M. Bowman, Rudyard Kipling, Robert Frost, Henry Wadsworth Longfellow and Sara Teasdale. I have taken a selection of these quotes and used them as the beginning of some chapters.



Tributes

When Dorothy Ley died on January 31, 1994 there was an outpouring of tributes to her personally and professionally. The following is a selection of those tributes. At the end of this book are tributes made to her at her funeral and memorial services in Beaverton and Toronto.


Dorothy Ley demonstrated unfailing compassion and concern for everyone with whom she came in contact in her professional and personal life. A brilliant physician and always keenly aware of her own humanity and that of her patients and coworkers. She had a unique ability to make her patients feel very special to her. Because of this she was very special to each of them.

     Norma Clark, Daughter of a Patient

I have known Dorothy over the years in many capacities -- professionally, as a pioneer in palliative care; in community work in Durham Region; as a valued friend, generous in her caring and support; and finally as a patient. Much has been said and written about her many accomplishments and the honours which accrued to her in her church and professional life, but it is as a person that I will remember her. Just as hospital, hospice and hospitality, coming from one Latin root, epitomized Dorothy's life and work, so do the words grace, gracefulness and graciousness exemplify her character. When I think of Dorothy, I also think of the words integrity and dignity. Those of us who were privilege to travel the last mile with her and who witnessed her courage as she became less and less able to perform the tasks of daily living, were constantly amazed by her acceptance of the indignity and helplessness. Life was very precious to her -- a gift -- to be lived to the fullest, but she was one of the fortunate ones who was able to say to me, "I have done everything I wanted to do." -- not resignation, but an affirmation of life. It was doubtful at one time if she would be able to accomplish her wish to die at home, but that was made possible by dedicated family, friends and nurses. She died with grace and dignity in her own home with those she loved and who loved her. We are honoured to have known her. Go with God Dorothy.

     Dr. Gillian Gilchrist, Medical Director, Palliative Care Team, Oshawa General Hospital

My first association with Dorothy Ley was as a young nurse being "cared for" by Dr. Ley. I was her patient and her care went beyond the usual medical requirements. It was characterized by compassion and by making herself available in her home on weekends or on vacation -- whenever care was required. She practised the principles of palliative care long before the words were known. Dorothy later became a mentor, a model and a friend.

     Shirley Herron, B.Sc.N.

Dorothy is a beautifully groomed, crisp, articulate, poised, straightforward woman who used to specialize in haematology and oncology. She has seen some two thousand people die, from which experience she has developed a passion for palliative care. She believes that death should be allowed more dignity and humanity than hospital procedures usually permit...."You realize we're talking about a middle-class phenomenon. Palliative care goes to people who have relatives and friends who care about them, but bag ladies die, too. All the dispossessed and lonely need palliative care, and where are they going to get it?

    June Callwood, extract from Twelve Weeks in Spring (1986)

I met Dr. Dorothy Ley when the Palliative Care Foundation was established. She was a woman of remarkable energy, commitment and vision. She understood the world of academic medicine, and the need for innovative educational programs, a professional journal and bibliographic resources to develop the knowledge base of a fledging field. She understood the needs of small floundering programs; and, the need for networking and technical support. Most of all, she understood the plight of individual people, patients and family members who needed an advocate. Palliative care in Canada owes much to her charismatic, sound pioneer leadership. She will be sorely missed.

    Ina Cummings M.D., C.C.F.P., Vice-President, Canadian Palliative Care Association, Director, Palliative Care Program, Camp Hill Hospital, Halifax

Dr. Dorothy Ley had a very lengthy struggle with cancer and experienced first hand the troubles, trials and frustrations of a terminal illness. During the final months of her life she was working on a book to share with us some of her experiences and some of the lessons learned on her journey. Her hope was, through her book, to teach more about palliative/hospice care from the recipient's perspective. She has a message for all of us. Dorothy was a remarkable lady who gave unselfishly of her time and her many talents....Dorothy loved the people of her community. This was very evident at her funeral. The little church was filled to overflowing and the people who were there to pay their respects came from every walk of life -- a tribute to a friend whose life touched so many in her ministries to people, both through medicine and through the church. Ever the caregiver, Dorothy continued to meet people's needs by allowing her many friends to say goodbye in the privacy of their own community.

     Shari Douglas, President, Ontario Palliative Care Association

Dr. Dorothy Ley made a very great contribution to palliative care in Canada. She headed the team whose survey of Canadian and international developments led to the establishment of the Palliative Care Foundation (now replaced by the CPCA). As Executive Director of the Foundation she helped uncounted groups to organize palliative care and hospice services all across this country. I consider her one of the founding mothers of Hospice, along with Cecily Saunders and Elizabeth Kubler-Ross.

     Dr. Paul Hentileff, President, Canadian Palliative Care Association (CPCA)

Dorothy reached out to those of us who knew her in very special ways -- each way unique to the individual needs we had. Her gift to me was one of friendship. I also value what she shared with me in knowledge and hopefulness of achieving the best of care for palliative care patients and their families. Her shoes will be hard to fill.

     Marilyn Lundy, R.N., P.H.N.

In palliative care I have had the opportunity to meet people who leave a lasting impression on my life just by being themselves. Dr. Dorothy Ley was such a person. We first met in the early 70s and she became my model and mentor in palliative care. Whenever I discussed my plans and ideas she always reminded me, "Reena, remember whom you are doing this for. Keep the patient and family the centre of your focus." During her illness we became closer and talked on the phone often. I was inspired by her courage and zest for life. She was a woman of Faith and often talked about spirituality as the heart of palliative/hospice care. She never wavered in her commitment to and interest in palliative care. Her loss to the movement is great. Her loss to me is painful. But for palliative care and for me, Dorothy has left a rich legacy of commitment to the dream and courage in times of adversity, Faith in a powerful God and honesty to ourselves.

     Ms. Reena McDermott, Past President, Ontario Palliative Care Association

With the death of Dorothy Ley at her home in Beaverton, Ontario on Monday, January 31, 1994, Canadian Palliative Care has lost a pioneer and one of its most effective protagonists. Dorothy was a richly talented person accustomed to breaking new ground in her multiple careers. As a haematologist/oncologist on the academic staff of the University of Toronto she became the first woman to head a clinical department at the Western Hospital. Subsequent initiatives found her establishing a chain of medical testing laboratories, founding the Canadian Palliative Care Foundation, and lending her energies to a variety of organizations and agencies established to improve the lot of the dying and their families. I didn't always agree with Dorothy. In fact, we frequently found ourselves taking opposite position on questions of mutual concern. In agreement, one found her to be a staunch ally; in disagreement, a most effective debater from whom one stood to learn a great deal. Dorothy touched and enriched the lives of thousands through her tireless industry, her capacity to give, her ready warmth and her spirited dynamism. Thank you, Dorothy, for your many gifts to us. We have lost a champion. We have lost a respected colleague. We have lost a friend.

    Dr. Balfour M. Mount, Director of Palliative Care Medicine, McGill University, Montreal

Dorothy Ley will be remembered for her honesty and enduring courage. She was a women with deep commitment to her Christian beliefs and values which were clearly evident at meetings. We will miss Dorothy as an advocate, colleague and friend in the pursuit of palliative care in Canada.

     Nora M. O'Donnell, Executive Director, Ottawa-Carleton Regional Palliative Care Association

I am entering my tenth year as Editor of the Journal of Palliative Care. Both the Journal and my editorship would never have happened without Dr. Ley. When she first asked me to work with her and others at the Canadian Palliative Care Foundation to start the Journal, I declined, too busy was I. But Dorothy, like some lovable Welsh terriers I know, would not let go. She convinced me that I should commit myself to palliative care as best I could. That would be as editor of a journal, she thought. Dorothy pointed to a road at a fork in the woods. I am deeply happy that I took that road. So, indeed, how could I ever forget Dr. Ley, as memorable as she will always be for all the wonderful things she had done. When I think of her I recall the workmen's chant in one of T.S. Elliot's poems: "In the vacant place We will build with new bricks.... Where the bricks are fallen We will build with new stone.... Where the word is unspoken We will build with new speech." Dorothy, master manager, rallied us to build with new speech.

     Dr. David Roy, Editor-in-Chief, Journal of Palliative Care

A person of several careers and multiple accomplishments, Dr. Dorothy Ley came to Palliative Care in 1981 offering a rich blend of clinical knowledge, political skills, business acumen and personal energy. Dorothy brought us "guts!" -- she was not afraid to tackle anyone or anything. She was fiercely loyal to the church, to her friends and to palliative care. Through her many projects and associations, she advocated for the care of the elderly and the dying and gave Ontario Palliative care an international profile. I join her many friends and colleagues in this tribute to her courage and achievements.

     Dr. John F. Scott, Director, Ottawa Regional Palliative Care Unit, Head, Division of Palliative Medicine, University of Ottawa

I have had the privilege of knowing Dr. Dorothy Ley for more than ten years in connection with the palliative care movement in Canada, in which she has been both a pioneer and charismatic leader. Her interest in palliative care grew out of her chosen medical speciality Haematology-Oncology. Because of her deep concern for her patients she was aware that many of them were going to die and thus the best that modern medicine had to offer was not enough. From her own spiritual journey she felt driven to lead the growing palliative care movement to a less medically oriented model; while accepting good control of physical symptoms as important, a central place must be left for the spiritual and psycho-social care of the individual. This was clearly demonstrated in her involvement in the development of the new [Ontario] Provincial Palliative Care Initiatives. While representing the Metro Toronto Health Council and being very ill herself, she was a strong voice for the involvement of spiritual care providers and volunteers in pain and symptom management teams. She also felt strongly that education for family physicians and other health care providers should be integrated at the local level. In conclusion, Dorothy will be greatly missed for her wise and impassioned counsel in these changing times, in a rapidly evolving discipline.

     Dr. John Swift, Medical Director, Palliative Care, Parkwood Hospital, London Ontario

Dorothy Ley was a sensitive, empathetic lady. She had a vision to improve care of the dying. She was a pioneer, and her dream was to ensure that palliative care principles were practised. Her insight into care of the aged paved a pathway in that area as well. Personal choice was paramount to Dorothy Ley's practice and she encouraged the movement away from a medically dominated model of care. To have known Dorothy was indeed a blessing.

     Connie Smith, Nurse Manager/PC Coordinator, Kincardine and District General Hospital

Dorothy came into my life so very quickly and with such a force of gentleness, serenity, firmness and wisdom. She left too quickly yet stays with me as few have ever done or will. I had the privilege to work with Dorothy on the [Ontario] Provincial Steering Committee for Palliative Care Initiatives. She touched, charged, energized, enriched and strengthened each of us and all of us together. We unanimously agreed that Dorothy should write the Forward to our report. She did. In early 1993, Dorothy told me that her great hope was that she would complete her work in our report. In characteristic fashion, Dorothy had the last word in her Forward to the Report: "The success or failure of these initiatives will depend on the willingness of professionals, volunteers, the public and patients and their families to understand, to cooperate and to support the goals of palliative care." Dorothy continues to challenge and urge us to do those things she did so very well -- understand, cooperate and support. Thank you, Dorothy; I miss you.

     Gail Ure, Manager, Long Term Care, London, Ontario Office



Biographical Sketch of Dorothy Corinne Hobbs Ley, M.D., F.R.C.P.(C), F.A.C.P.

Out of the Wilderness

I am a renegade, laughing at rules and laws

And my whims are my king and my royal family.

I am an adventurer delving in joy and sorrow

And love and friendship and the white quarries of truth.

I am a plunderer, taking all that the sages have left me

And adding thereto, that the children to come may have peace.

I am a highwayman, stealing the gold of the dawn

And the star-heavy, blue-purple robe of the night.

I hold up the wind for its fragrance and wrestle the sea.

With my brown, naked arms, for the tang of its salt.

I am a pirate, a gay, laughing, profligate pirate

Sailing the seas of delight, where my loot

Is diamonds of sunlight, and the cold pearls of the moon.

Wilson MacDonald

 

When you meet a person for the first time you usually meet only part of that person: the part that is public and represents the career person. The other part is often hidden from view and is the adult version of the child that was. A curriculum vitae presents the public person's history and accomplishments. At the end of this book is Dorothy's formal history of professional qualifications, volunteer work, awards and a list of her published works.

This chapter, however, looks at the person that grew out of the child born at Toronto General Hospital on April 4, 1924. Her mother Inez Corinne Dunlop (Ley) and her father Charles Thomas Hobbs Ley were both proud of the accomplishments of the little baby that came to them that spring, five short years after World War I.

Dorothy grew up in Toronto and her experiences are shaped by that city. During her youth, Toronto was still in its infancy as a modern metropolis. Up to the Second World War, Toronto was primarily populated with White Anglo-Saxon Protestants and that is the environment in which Dorothy grew up. Through her lifetime she had seen it shift from a WASP city to what the United Nations has called the most multi-cultural city in the world. Toronto has people from over 100 countries living with 3,500,000 other people. Catholicism is now the predominate religion and few people take for granted that the leadership within the city will remain in the "old boy", white, middle-to-upper classes beyond the next decade.

Dorothy's childhood was fairly typical of the time. She missed out on some of the normal aspects of childhood because she was so good academically that most of her time was spent reading and learning. In 1940 Dorothy went to the University of Toronto to study literature. Originally she had wanted to study archaeology but the war in Europe and Africa was destroying many of the major archaeological sites in the world. Adapting to the situation, she wanted to be a writer and study the great works of authors from around the world. Early in her studies at Victoria College, however, she discovered that she could complete her week's assignments in one day and soon became bored.

Dorothy was examining several other career options and found her mother in their comfortable kitchen one day to ask her if nursing might not be a good career choice. Her mother had been a nurse and thought it was an admirable profession. Although Dorothy had not excelled at mathematics in high school because she found it uninteresting, she believed that she could work hard at her maths and sciences in an upgrading year and apply for nursing school. Her mother, always busy doing something around the house or knitting for her two daughters and husband, was ironing some clothes in the kitchen.

Without really looking up, Mrs. Ley talked about her cousin, Dr. Jessie McGeachy, who was then one of only a handful of women physicians in Toronto. Mrs. Ley suggested that Dorothy go pay her a visit. Dr. McGeachy encouraged Dorothy to consider a career in medicine and that meeting led Dorothy into a remedial year of math and science studies before entering medical school. During the War there was an opportunity for more women (10% of enrolment) to enter medical school as many of the male students had gone off to war. Ironically, when the war ended, those male students had precedent over the other students to complete their medical studies so that Dorothy had to wait an extra two years to complete her degree in 1948.

During her first year, Dorothy almost failed to pass because of her difficulties with mathematics. Never one to accept failure, she hired a tutor and worked extra hard to understand the challenging concepts of algebra, calculus and geometry. She passed that year and excelled in this subject in her following years.

The delay in her studies caused by the war led to some financial difficulties. Medical school was costly even then and she had promised her parents that she would pay her own way. She was fiercely independent, as was expected of her, but recognized that she could not complete her training without her father's financial help. Her father had not been pleased with Dorothy's decision to go into medical school. As was common for his generation, he believed that young women should not be exposed to the conditions that doctors witnessed in their daily practices. The Dean of Medicine had similarly advised her against medicine since he believed that Dorothy would only get married one day and quit medicine.

Dorothy went reluctantly to her father with a detailed accounting of what she would need to complete her studies with not a penny extra for the things someone in her early twenties might like to buy for herself. Mr. Ley examined Dorothy's itemized budget and agreed to loan her the funds she needed -- to the exact penny she requested. Years later, after Mr. Ley had died, Dorothy found newspaper clippings of her success in her father's wallet. He was evidently very proud of his daughter.

During her studies, Dorothy developed an interest in diseases of the blood which led to her further studies in the area. She had begun her five-year post-graduate studies in obstetrics and gynaecology but her year of research at Toronto General Hospital under world-famous pathological chemist Dr. James Dauphinee convinced her that her interests lay in blood diseases. These studies resulted in her specializing in internal medicine with a sub-speciality in haematology. This was in 1950 before the time that cancer would have its own speciality, oncology.

When looking at someone's background it is important to understand what motivates their efforts. Dorothy's underlying motivation was similar to many people of her generation. Her motivation, shared by so many people of pre-war protestant Toronto, was commonly summarized as "worship God, serve mankind". She worked hard, took advantage of opportunities and difficulties that presented themselves and concentrated on her basic Christian principles. There was no single motivator, however, in her life. There was no life-defining event that encouraged her to pursue medicine, business, or palliative care.

In today's utilitarian, modern view of people as economic units within a global economy, it is hard to believe that people actually based their life's work on such simple words as "worship God, serve mankind". Simple words are not easily translated into daily living, however. There were choices in Dorothy's life about career, marriage and community service that would have dramatically altered her life. She based her decisions, however, on a strict code of right and wrong and would not accept second best for convenience sake.

Evidence of Dorothy's determination to serve mankind in the best ways she could is seen during her continuing medical studies. She chose a field that was new and untried but potentially rewarding if cures could be found for some of the blood diseases she was studying. She needed to travel beyond Toronto to learn as much as she could so she continued her studies at Barnes Hospital and the University of Washington in St. Louis before returning to Canada to practice haematology. She had an active practice (14-hour days), completed a further degree in pathological chemistry, taught at the University of Toronto, became the first woman head of a medical department (haematology and oncology) at Toronto Western Hospital and she continued to do research in the field. Later in her career she opened and operated fourteen testing laboratories which she later sold to MDS Labs. Not surprisingly, she became highly regarded by her medical peers becoming the first woman to receive an honourary fellowship of the American College of Physicians, and the first Canadian woman physician to receive the Canadian Medical Association Medal of Service.

Her proudest moment, however, came in the late 1960s when she presented a paper based on research she had done with colleagues in her field. The conference was in Stockholm and the occasion was so special to her because her mother, who had always supported her career choice, took her maiden airplane flight to hear, for the first time, her daughter speak in public. Her mother could not understand the content of the presentation but she did share in her daughter's success. That success had begun 20 years before in their kitchen discussion about going to nursing or medical school.

Dorothy's sense of right and wrong came from her parents and her parents' generation work ethic. Her father, of medium height and a strongly built man with an engineering degree was her role model. He had been a millionaire in Alberta before the stock market crash. Afterwards, he managed a foundry in Toronto and lived a comfortable upper-class existence in a beautiful neighbourhood in Toronto and always drove a Cadillac. She adored him as a child and followed his practice of demanding perfection of herself and of others. He was the most just man she ever knew and she tried to apply his sense of justice and fairness in her work and in her relationships.

Her mother, a diminutive, strong-minded Scots woman, held the family together with her intuitive abilities and skills. When Dorothy was younger she was convinced that her mother didn't understand her. It was only after becoming an adult that Dorothy realized her mother knew her better than she knew herself. Dorothy's mother lost most of her hearing while Dorothy was still a very young girl. People did not make a big fuss about such a disability in those days and everyone accommodated Mrs. Ley as a natural part of life.

Dorothy helped both of her parents to live at home until they died. Her father died in 1955 and her mother in 1971. Dorothy lived with her mother and her mother's cousin, Donalda (Donnie) McGeachy until her mother moved back to her home town of Almonte, in the Ottawa Valley, to be with her older family members and friends.

Dorothy continued to live with her cousin until Donnie died in 1990. They had lived together for 39 years and were each other's best friends, confidantes and supporters. It was Donnie, for example, who convinced Dorothy to allow a group of people in Etobicoke, Ontario where they had lived for many years, to name a community hospice the Dorothy Ley Hospice. Dorothy hadn't liked the idea. She thought that such honours should be given to others more deserving than her and, perhaps, in honour of someone who had died. Donnie convinced her that she was the right person and encouraged her to help this group develop their program and services to meet the needs of the community where the two of them had lived for so many years. It took many meetings over several years to finalize the approach this new community hospice would take and Dorothy was regularly involved to help them understand the hospice care philosophy and how it applied to community, versus hospital, based services. Dorothy understood these differences from her work in hospitals, her work with the Palliative Care Foundation, her efforts on the Board of Toronto's Casey House (a free-standing hospice for people with AIDS) and her own experiences helping people live at home until they died.

Donnie had a wonderfully full life as well. She had been an actress on the New York stage, a registered nurse and later one of the first licensed speech therapists in Canada. She helped develop the Speech-Language Pathology Program at the University of Toronto. She was a leader in her field and well known within the social circles of Toronto.

After Dorothy retired, they moved to Beaverton, Ontario on the shore of Lake Simcoe. They called their home "Tir N'an Og" which means "Land of Dreams" in Gaelic. From this home, Dorothy continued her retirement work in palliative care, including her time as Founder and President of The Palliative Care Foundation. She also became more involved in her church and the work of the Anglican Church in Ontario.

Many things have been said about Dorothy. Her friends and family have seen the Dorothy develop who was always an "easy touch" for help of any kind. The loyalty of her circle of family and friends speaks to the dedication and commitment that Dorothy had shown them. Her patients knew they could call her day or night, weekday or weekend for medical care and reassurance. She involved her patients in making decisions about their care to the point where she even gave some of them medical journals discussing the pros and cons of certain new treatments. She began using increasing doses of narcotics to manage pain long before palliative care was a reality in Canada. The RCMP were regular visitors to her office to monitor her use of narcotics, and they too became allies in providing the kind of care her patients needed.

Professionally, her work was demanding and so was she; she did not suffer fools lightly nor did she accept peers, leaders and others who did practice the palliative care philosophy faithfully. Her language was sometimes colourful and most often direct. Although she was shy and non-assertive by nature, excellence was her guide post and her public image of the assertive, elegant and forthright professional came out of her convictions.

Dorothy had experienced life as a patient when she was a child and her sister had pushed her off a dock. She broke her back during this accident and spent some time in a wheelchair and went through rehabilitation therapy. She continued to have back problems throughout her life and used the experience to try and understand what her patients were going through. For example, she learned from her own disability that a few minutes sitting down with a patient is worth a great deal more in comfort and concern than standing and looking down toward the patient as most physicians do.

Dorothy's life was full and varied. She was a licensed lay reader in the Anglican Church and her faith sustained her through many difficult and rewarding times during her life. She was a church organist for a time and gave sermons including some on the care of people who were dying and those living with AIDS. Her religion, however, did not prevent her from dealing with the practical nature of the political worlds of medicine and palliative care. In fact, her religious and spiritual beliefs provided the foundation for role modelling an inclusive model of care.

Dorothy's favourite stores to shop at were Canadian Tire and Aikenheads. She loved projects and thoroughly enjoyed buying the "toys" that allowed her to add on a study to her home, fix floors, mow her lawn with the latest mower, plant her garden with thousands of flowers, mend fences or survey the lake at the back of her home with one of her boats. Two of her closest friends helped out with the upkeep of her home and garden and they enjoyed sipping coffee with her while working on the garden or her home. Along with her projects she was a collector. She collected wood-carved ducks, stamps, first-day covers, non-fiction books and music.

Dorothy was as comfortable at a meeting of her peers to discuss policy and future needs in medicine as she was walking and working bare-foot in her garden. She could talk about any subject with ease because of her wide interests and her unsatiable love of reading and learning. She read only non-fiction works in medicine and the sciences, history, geography, philosophy, psychology, etc. She read novels only on airplane trips finishing the novel before leaving the plane and usually giving the book away to another passenger. She could talk sports (football was her favourite, followed by hockey, which she played in college as her team's goalie). Her private life was private which encouraged people to confide in her since they knew she did not discuss with others what was said to her privately.

She had a dislike of all cooking except for barbecuing and one of her great passions were the dogs that she and Donnie had. Her favourite dog was a Cairn Terrier named Hamish and during the last years of her life she was comforted by Donnie's dog Sheena, a Lhasa Apsos.

Children of her closest friends called her Auntie Do and they knew they had a friend and advocate in Dorothy. She was not overtly demonstrative but she was always there with a smile, an ear to listen to all their excitement and a word of advice. Although she was always busy working on some report, going to meetings or preparing a presentation or article, she always took the time needed to help someone she knew without making them feel rushed. People would call her for medical advice or for tips on how to deal with the local government (she had been President of her local Ratepayers Association in Beaverton). She quietly helped people find work by making a phone call or two. She helped people find the right doctor for the right treatments and gave suggestions about what her friends might ask for in the way of support. She found pleasure in her friends, home, work and more than the occasional New York Cherry Cheesecake or chocolate ice cream.

Politically she was small "c" conservative and liked the stability that the monarchy provided the Commonwealth. She felt she was always treated fairly by men and did not believe that women's lib helped women as much as they thought. Men and women worked well together when they both worked hard for a common purpose.

Perhaps one of the most difficult, yet rewarding, times of Dorothy's life was when she took care of Donnie in their home. Dorothy was a physician by profession and knew very little about the nursing skills required to take care of an ill person at home. Dorothy turned to a cousin's wife, Barbara McGeachy, a nurse, for guidance. Barbara taught Dorothy the nursing skills necessary to take care of Donnie. Dorothy learned to do everything and anything necessary and did them "as well as any nurse" (high praise from a nurse to a doctor). At first Dorothy was not sure if she could do it on her own but she became expert during the four to five months that Donnie was at home. When Dorothy needed to be away for some palliative care work, Barbara would come from Kingston to help out.

Donnie died a peaceful death at Tir N'an Og with the help of Dorothy and many friends who provided extra support and encouragement. Dorothy learned several things about providing palliative care in the home and used her experience to continue to teach palliative care to others.

At the beginning and ending of this book are testimonials by some of the people who worked with Dorothy over the years. Their comments speak for themselves. How will Dorothy's closest friends remember her? When I asked them that question during individual interviews there was a consistency in their replies.

They will remember Dorothy as a caring, compassionate healer of people's bodies, minds, and even souls. She was action oriented and wanted to see results. She had will power that was extraordinary. When she made her mind up about something, which might take quite some time to accomplish, she never wavered from her decision and always followed throughout regardless of the personal cost to her. As one friend noted, "She showed more courage than anyone I've ever seen in their last months of life. She never complained, never asked "Why me?", was never bitter that she didn't live as long as others, and never complained about pain or discomfort.

She was honest and direct with her friends who asked for advice. She knew instinctively when something was wrong with someone and would call or write them offering help, encouragement or support. She showed up on people's doorsteps at just the right time when someone needed her.

Others remember her quiet elegance and dedication. They remember that she was giving a keynote address at a conference one time, but had just had some surgery related to her cancer. She always kept her commitments regardless of her own personal situation so she gave the address without comment about her recent surgery. After the presentation, she asked two of her friends at the conference, who were nurses, to help her change her medical dressings in her hotel room. No one else ever knew, and more importantly, no one else needed to know according to Dorothy. She did not want pity nor the image of a martyr or hero.

How would Dorothy like to be remembered? Again, her friends had some thoughts. They agreed that Dorothy would like to be remembered as a compassionate physician who practiced excellence for the whole person rather than concentrate on their disease. She was a mentor to so many people in the field of oncology and palliative care and she was proud of that teaching role. She was a loyal friend who encouraged others to reach beyond their comforts to achieve their very best. She criticized programs and protocols rather than people and wanted to act as a role-model for others in providing the palliative care philosophy of care.

In a sentence, Dorothy wanted to be remembered as an "old fashioned" doctor who took care of the patient and the family, combining physical, emotional and spiritual support. She was down to earth. Her awards, accomplishments were not a big deal to her. She just did those things that were important to her regardless of the rewards. She would not want to be remembered as someone above the rest of us but as an ordinary, hard-working person who used her abilities in the best possible way and worked hard to improve everything she did. As one friend concluded, "She would be embarrassed by all the fuss made to her in tributes."



Acknowledgements

by Harry van Bommel

Dorothy would have wanted the following people thanked for taking such good care of her both at home and in the hospital (in alphabetical order): Dr. Harold Ames, Betty Ballard, Doreen Berry, Dorothy Bircher, Norma and Bill Brown, Dr. Jose Chan, Ron Coovadia, Charlotte Empringham, Susie Galiegue, Dr. Gillian Gilchrist, Ann Link, Dr. Pat Marchuk, Barbara and John McGeachy, Peter Oldenziel Geoffrey and Mary Parke-Taylor, Marlene Siomra, the entire palliative care team and the Staff on the 8 Main floor at Oshawa General Hospital, and the St. Elizabeth Visiting Nurses Association who attended Dorothy at home.

I would like to add my personal thanks to many of the people listed above who spent time with me telling me stories filled with love, laughter and insight about their friend Dorothy Ley. Their efforts form a large part of the biographical sketch that appears in this book. I would like to add thanks to Norma Clarke, Don Foster, Shirley Herron, Marilyn Lundy and Meade Wright for their invaluable contributions.

Caroline Walker, publisher of NC PRESS was always excited about this book's possibilities and patient throughout the long delays in getting the book ready for production. Caroline, through her quiet, ongoing support of Canadian hospice care continues to provide us with books that deal with this, and other, important social issues. I am grateful to her for her foresight.

Kathy Bowden, Norman Endicott, Shirley Herron and Janet Walker reviewed a draft of this book and I am most indebted to them for their editorial advice and interest in this project.

I would like to thank the Journal of Palliative Care for permission to reproduce their logo on our back cover. This logo was designed during the time that Dorothy Ley was head of the Palliative Care Foundation and she was instrumental in its development. The symbol is a twentieth century printer's linotype ornament. It was chosen as a logo because it contains the elements that effectively communicate the objectives of the Journal. The ornament consists mainly of two parts united to form one harmonious unit. The inner part of the ornament suggests the waves of the sea (which has commonly symbolized life itself) while the other area suggests the appearance of a gentle protective circle (similar to the function of palliative care). The whole suggests the restorative qualities associated with the sea uplifting the human spirit. This connotes the same idea that good palliative care can maintain the dignity and self-respect of the patient and the family.

We would also like to acknowledge that portions of this book are taken from a chapter by Dr. Ley that first appeared as: "Spiritual Care in Hospice" in Death and Spirituality edited by Kenneth J. Koka with John D. Morgan. (1992). Amityville, NY: Baywood Publishing Company, Inc.

We further acknowledge permission to reproduce, in the Appendix to this book, the Assumptions and Principles of Spiritual Care; A Statement of Assumptions and Principles Concerning Education About Death, Dying and Bereavement; and A Statement of Assumptions and Principles Concerning Education About Death, Dying and Bereavement for Professionals in Health Care and Human Services, produced, with Dr. Ley's participation, by The international Work Group on Death, Dying and Bereavement. Further information on their work is available at: the International Work Group Secretariat, King's College, 266 Epworth Avenue, London, Ontario, Canada N6A 2M3 (Tel: 519-432-7946).

Special thanks to the Ontario Palliative Care Association for allowing us to reproduce tributes to Dr. Ley published in their Spring 1994 Special Patron's Issue (Volume IV, No 1.). These tributes appear with other ones at the beginning of this book. Dr. Ley was the patron of this association and touched the lives of many of their members.

Special thanks also to Reverend Douglas Graydon, Dr. Elizabeth Latimer, Dr. Larry Librach, The Right Reverend Terrance Finlay, and The Right Reverend Geoffrey Parke-Taylor for permission to quote from their tributes to Dr. Ley at her funeral and memorial services. These tributes appear at the end of the book.

Marlene Siomra, a good friend of Dorothy Ley, painted the portrait of Dr. Ley that appears on the front cover. Dr. Ley was most pleased to see the portrait and a draft sample of the cover before her death.

Half the royalties of The Heart of Hospice will be donated to The Dorothy Ley Hospice in Etobicoke, Ontario.

Janet Klees has provided physical, emotional, spiritual and editorial support throughout this project. Like the two women named in my dedication of this book, Janet represents the hospice care philosophy of compassionate support and care on a daily basis to all people she encounters. Her support has made this book possible in more ways than I can describe. Thank you Janet.

Preface & Introduction

The Heart of Hospice


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Copyright © 1994 Harry van Bommel

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