Appendix 1: Curriculum Vitae

Dr. Dorothy Ley accomplished many things in her life and received many awards in recognition of her contributions to the field of cancer research and practice, as an entrepreneur owning a chain of medical laboratories, as a pioneer in the fields of palliative care, death, dying and bereavement and in the growing area of meeting the needs of our aging population.


She achieved many "firsts" including: first Canadian woman awarded an honourary fellowship of the American College of Physicians, and the first Canadian woman physician to receive the Canadian Medical Association Medal of Service.


Another honour was receiving the Commander of the Order of St. Lazarus (1989) and later becoming a Dame in the same order. This order traces its origin to the Crusades in the 12th century. It is not affiliated with any specific religion today and has branches in countries across the world. Traditionally its reemergence began in France and the modern order's main object was to provide treatment and do research to fight leprosy. It has extended its scope of interests to include other areas of medicine. The order flourished in Quebec during the French regime and was re-established two hundred years later to help further the case of national unity (being the first organization to receive a federal charter in both official languages) and to do charitable work.


Her achievements are highlighted in her curriculum vitae reproduced below.


Education

1936-1941 Lawrence Park Collegiate Institute

1941-1948 University of Toronto

Degrees

1948 Doctor of Medicine, University of Toronto (cum laude)

1951 B.Sc. (Med.) Pathological Chemistry, University of Toronto

1956 Fellow of the Royal College of Physicians (C)

1966 Fellow of the American College of Physicians

Training

1948-1949 Junior Rotating Internship Toronto General Hospital

1949-1950 National Research Council Fellow Department of Pathological Chemistry University of Toronto

1950-1951 Fellow in Pathology: Women's College Hospital and Banting Institute

1952-1953 Senior in Medicine, Ward I, Toronto General Hospital

1953-1954 Assistant Resident in Medicine, Barnes Hospital, Washington University, St. Louis, Missouri

1954-1956 N.R.C. Fellow, Department of Medicine, Toronto Western Hospital

1956-1958 Clinical Research Associate, Ontario Cancer Treatment and Research Foundation, Toronto Western Hospital

1958 Gordon Richards Travelling Fellowship, Canadian Cancer Society

Honour Society

1948 Alpha Omega Alpha Honour Medical Fraternity

Honours

1992 Dame of the Military and Hospitaller Order of Saint Lazarus of Jerusalem

1989 Commander of the Military and Hospitaller Order of Saint Lazarus of Jerusalem

1989 Neville Hodson Walker Award, Metropolitan Toronto District of the Ontario Medical Association for "service, selflessness and sacrifice in the field of medicine and her outstanding contribution as a doctor"

1988 Medal of Service, Canadian Medical Association (1st woman so honoured)

1980 Listed in Who's Who of American Women

1977 Her Majesty's Jubilee Medal

1963 Certificate of Merit, Canadian Cancer Society

No dates: Life Member of the International Council of Women Senior Member, Canadian Medical Association, Life Member of the Ontario Medical Association

Research

 Iron MetabolismAlternation in blood chemistry and haematology in malignant disease; cancer chemotherapy -- clinical trials and evaluation.

Appointments

Attending Physician, Toronto Western Hospital (1956-1972)

Director of Haematology and of the Tumour Clinic, Toronto Western Hospital

Assistant Professor of Medicine, University of Toronto Faculty of Medicine (1967-1972)

Director (and designer), Laboratory Proficiency Testing Program, Section on Laboratory Medicine, Ontario Medical Association

Consultant to Clinical Laboratories, Oakville-Trafalgar Memorial Hospital

Founder and President, Toronto Medical Laboratories Ltd. (now part of MDS Health Group)

Past President, Academy of Medicine, Toronto (1975-1976)

Past Chairman, Quality Control Committee Intersociety Council of Laboratory Medicine of Canada

Member, National Survey of Palliative Care Programs in Canada

Founder, President and CEO of the Palliative Care Foundation (1981-1986)

Founder, Canadian Conference of Palliative Care (held every 2 years)

Member of the Executive Committee, Casey House Hospice, Toronto (1986-1988)

Lay Reader and Warden, Anglican Church of Canada

Parish Representative to the Provincial and Diocesan Synods, Anglican Church of Canada

Member, Church Development Board, Diocese of Toronto, Anglican Church of Canada (1986-1987)

Chairman, Canadian Medical Association Committee on the Health Care of the Elderly (1984-1987)

Chairman, President's Special Committee for Implementation of the CMA Report on Health Care of the Elderly

Canadian Representative to the World Council of Churches Consultation on AIDS in Tanzania, 1989

Canadian Representative to the Board of Directors of the National Hospice Organization of the United States of America

Vice-Chairman, Board of Directors, International Work Group on Death, Dying and Bereavement

Vice-Chairman, Annual Meeting Scientific Planning Committee, Ontario Medical Association

Member, Professional Services Committee, Victorian Order of Nurses for Canada

Member, Board of Directors, York Region Branch, Victorian Order of Nurses

Member, College of Bishops Task Force on AIDS, Diocese of Toronto, Anglican Church of Canada

Member, Board of Directors and Health Services Advisory Committee, Casey House Hospice, Toronto

Chairman, Quality Assurance Sub-Committee, Health Services Advisory Committee, Casey House Hospice

Member, Executive, Ontario Medical Association Section on Palliative Care

Chairman, Education Sub-Committee of Ontario Medical Association Section on Palliative Care

Member of the Ontario Medical Association Advisory Group on the Elderly.

Chairman, Canadian Coalition on Medication Use in the Elderly.

Chairman, National Continuing Care Liaison Committee.

Canadian Medical Association representative to the National Action Committee of the CNIB re: Blind and Visually Impaired Seniors.

Chairman of the Board and President, The Dorothy Ley Hospice, Toronto.

Chairman, AIDS Committee, Anglican Diocese of Toronto.

Chairman of the Planning Committee, Anglican Diocese of Toronto

Member of the Planning and Development Board, Anglican Diocese of Toronto

Member of the Board of Directors, VON Durham

Member of the Pension Board and Pension Committee, Anglican Church of Canada

Member of the Hospice Durham Steering Committee

Chairman, Metropolitan Toronto District Health Council Task Force on Palliative Care

Past President and Chairman of the Planning Committee, Cedarhurst Golf Club, Beaverton, Ontario

Past President, Beaverton-Thorah Homeowners' Association

Numerous honourary positions with hospice care groups.

Publications

(1994). The Heart of Hospice. Toronto: NC Press.

(1992). Spiritual Care in Hospice in Death and Spirituality, ed. K. J. Doka and John Morgan.

(1990). Palliative Care (Chapter 7) and The Future of Palliative Care (Chapter 8) in Saying Goodbye: Essays. Toronto: TVOntario.

(1989). The Elderly and Palliative Care in Journal of Palliative Care, 5:4, 43-58.

(1988). The Casey House Model in Journal of Palliative Care, 4:4, 111-115.

(March, 1988). Ethical Issues in Geriatrics: Editorial in Synapse, Vol. 4, No. 1.

(1988). Spirituality and Hospice Care: with Corless, Inge B., in Death Studies, Vol. 12, No. 2.

(1988). AIDS in Canada, in AIDS: Principles, Practices and Politics. Eds: Coreless, Inge B. and Pittman-Lindemann, Mary. Washington, DC: Hemisphere Publishing Corporation.

(April, 1987). AIDS: Proceedings of the North American Conference on Care of Terminally Ill Persons with AIDS, Ottawa, Canada. Editor.

(1987). The Elderly -- Challenges for Today -- Options for Tomorrow: Report of the Committee on Health Care of the Elderly. Ottawa: Canadian Medical Association.

(January, 1987). The Problem of Pain, in Canadian Family Physician, Vol. 33.

(December, 1986). The Elderly in Canada: Today and Tomorrow, in Canadian Family Physician, Vol 32, 2572.

(1986). Heroin -- The Next Step, in Journal of Palliative Care, 1:2, 46-47.

(1985). Palliative Care in Canada: The First Decade and Beyond, in Journal of Palliative Care, 1:1, 32-35.

(November, 1982). Palliative Care Foundation: Source of Support and Help, in Ontario Medical Review.

(1980). Proficiency at Hemoglobinometry in Ontario Laboratories Between 1974 and 1979, in CMAJ, Vol. 125, 180-181.

(1980). A System of Proficiency Testing in Immunohaematology, in Clinical Laboratory Haematology, Vol. 3, 125, 180-181.

(1977). Quality Control in Canada. Editor of Report of the Intersociety Council of Laboratory Medicine of Canada. Presented to Health and Welfare Canada.

(1974). Dehydration, in Encyclopedia Britannica, Edition 15, 560.

(September, 1974). The Development of an Interlaboratory Proficiency Testing Program for the Province of Ontario: I. A Preliminary Survey of Clinical Chemistry; II. Design of Performance Graphs, in Clinical Biochemistry, Vol. 7, 223-238, 239-250.

(May-June, 1973). The Case for Quality Control: Some Comments on Quality Control, Proficiency Testing and Laboratory Licensing, in Newsletter, Ontario Society of Medical Technologists.

(October, 1973). Quality Control in the Routine Laboratory. For Department of Public Health, Nova Scotia.

(June, 1967). The Use of Nitrogen Mustard for Prevention of Bladder Tumour Recurrence: (with Drs. P. Crassweller and G. Rankin) in The Journal of Urology, Vol. 100.

(September, 1966). Thynoma and Erythroid Hypoplasia with Carcinoma of the Pancreas, Bronchiolar Hyperplasia and Pulmonary Tuberculosis, in Annals of Internal Medicine (with M. Lipa), Vol. 65, No. 3, 541.

(August, 1964). Preliminary Report on an Iron-Sorbitol-Citric Acid Complex (Jectofer), A New Intramuscular Iron Preparation, in CMAJ, Vol. 91, 289-292.

(December, 1963). Current Concepts of Iron Metabolism, in CMAJ, Vol 89, 1196.

(November, 1963). Current Concepts of Iron Metabolism, in CMAJ (Editorial), Vol. 89.

(October 1963). Mast Cell Disease, in CMAJ, Vol. 89, 770-775.

(February, 1962). A Preliminary Report on the Use of 5-Fluoracil in Malignant Disease, in CMAJ, Vol 86, 207-210.

(June, 1960). Iron Metabolism in Malignant Diseases: Serum Iron and Iron-Binding Capacity in a Control Group of Hospitalized Patients, in Applied Therapeutics.

(May, 1957). Changes in White Blood Cell and Bone Marrow Morphology and Serum Protein Fractions in Induced and Spontaneous Hypersensitivity States, in The Journal of Allergy, Vol 28, No. 3, 220-228.

(September, 1957). Radioisotopes in Haematology, in Modern Medicine of Canada, 69-78.


Appendix 2: Statement of Assumptions and Principles

Dr. Dorothy C.H. Ley was a member of the International Work Group on Death, Dying and Bereavement (IWG). As a member she was involved in writing three documents related to this topic: Assumptions and Principles of Spiritual Care (1989), A Statement of Assumptions and Principles Concerning Education About Death, Dying and Bereavement (1992), and A Statement of Assumptions and Principles Concerning Education About Death, Dying and Bereavement for Professionals in Health Care and Human Services (1991). Below are complete texts of these documents.


The IWG is composed of clinicians, researchers and educators dedicated to the development of research, knowledge and practice dealing with death, dying and bereavement, and with its education. It was founded in 1974 at Columbia, Maryland and includes members (by invitation only) from Australia, Canada, Columbia, France, Germany, Greece, Africa, the United Kingdom and the United States of America. It meets every 18 months in different cities around the world.

The International Work Group has kindly consented for us to reproduce these documents, in their entirety, here. I strongly recommend that readers get their publication, Statements on Death, Dying and Bereavement (1994), edited by Charles A. Corr, John D. Morgan and Hannelore Wass. This book includes the three documents in this appendix but also seven others on: underlying standards of care for the terminally ill; palliative care for children; concerning care for persons affected by HIV Disease; psychosocial care of dying persons and their families; bereavement; care of the dying and bereaved in developing countries; and education about life-threatening illness, death, dying and bereavement for volunteers and non-professionals.

For further information contact the International Work Group Secretariat, King's College, 266 Epworth Avenue, London, Ontario, Canada N6A 2M3 (Tel: 519-432-7946).

The following statements use assumptions and principles based on the following definitions:

Assumption: A statement accepted as fact on the basis of commonly observed experience.

Principle: A collective judgement as to the proper response to the assumption.

Please note that for each assumption there is a corresponding principle. Therefore, when reading them, match up the assumption with the principle.


Assumptions and Principles of Spiritual Care

Developed by the Spiritual Care Work Group of the International Work Group on Death, Dying and Bereavement.

Our thanks to the members of the IWG on Death, Dying and Bereavement and the participants of the Sixth World Conference on the Terminally Ill for their helpful comments on earlier versions of this document.

Introduction

In those areas of the world where medical care has been shaped by sophisticated technologies and complicated health care delivery systems, efforts to humanize patient care are essential if the integrity of the human being is not to be obscured by the system. This is especially needed for individuals with chronic maladies or those in the process of dying.

Dying is more than a biological occurrence. It is a human, social and spiritual event. Too often the spiritual dimension of patients is neglected. The challenge to the health care provider is to recognize the spiritual component of patient care and to make resources available for those individuals who wish them and in the form desired.

Spirituality is concerned with the transcendental, inspirational and existential way to live one's life as well as, in a fundamental and profound sense, with the person as a human being. The search for spirituality may be heightened as one confronts death. This uniquely human concern is expressed in a variety of ways both formal and informal. Those who provide care for dying persons must respect each person's spiritual beliefs and preferences and develop the resources necessary to meet the spiritual needs of patients, family members and staff. These resources and associated support should be offered as necessary throughout the bereavement period.

While the modern hospice movement has arisen within Western Society with its particular cultural, social and spiritual milieu, the following principles may be applicable in and adapted to other countries and cultures. Ultimately the Assumptions and Principles of Spiritual Care should influence other aspects of health care and be integrated into the larger system. Their need and manner of implementation, however, will be shaped by the spiritual life of a given individual and society.

GENERAL

ASSUMPTIONS

1. Each person has a spiritual dimension.

2. A spiritual orientation influences mental, emotional and physical responses to dying and bereavement.

3. Although difficult, facing terminal illness, death and bereavement can be a stimulus for spiritual growth.

4. In a multicultural society a person's spiritual nature is expressed in religious and philosophical beliefs and practices which differ widely depending upon one's race, sex, class, religion, ethnic heritage and experience.

5. Spirituality has many facets. It is expressed and enhanced in a variety of ways both formal and informal, religious and secular, including, but not limited to: symbols, rituals, practices, patterns and gestures, art forms, prayers and meditation.

6. The environment shapes and can enhance or diminish one's spirituality.

7. Spiritual concerns often have a low priority in health care systems.

8. Spiritual needs can arise at any time of the day or night, any day of the week.

9. Joy is part of the human spirit. Humour is a leaven needed even, or especially, in times of adversity or despair.

Individual and Family (natural and acquired)

10. Human beings have diverse beliefs, understandings and levels of development in spiritual matters.

11. Individuals and their families may have divergent spiritual insights and beliefs. They may not be aware of these differences.

12. The degree to which the patient and family wish to examine and share spiritual matters is highly individual.

13. Health care institutions and professionals may presume they understand, or may ignore, the spiritual needs of dying persons.

14. People are not always aware of, nor are able, nor wish to articulate spiritual issues.

15. Much healing and spiritual growth can occur in an individual without assistance. Many people do not desire or need professional assistance in their spiritual development.

16. Patients may have already provided for their spiritual needs in a manner satisfactory to themselves.

17. The spiritual needs of dying persons and their families may vary during the course of the illness and fluctuate with changes in the physical symptoms.

18. Patients and their families are particularly vulnerable at the time of impending death.

19. As death approaches, spiritual concerns may arise which may be new or still unresolved.

20. Spiritual care of the family may affect the dying person.

21.The family's need for spiritual care does not end with the death of the patient.

CAREGIVERS

22. Caregivers, like patients, may have or represent different beliefs as well as different spiritual or religious backgrounds and insights.

23. Many health care workers may be unprepared or have limited personal development in spiritual matters.

24. The clergy is usually seen as having primary responsibility for the spiritual care of the dying.

25. Caregivers may set goals for the patient, the family and themselves which are inflexible and unrealistic. This may inhibit spontaneity and impede the development of a sensitive spiritual relationship.

26. Ongoing involvement with dying and bereaved persons may cause a severe drain of energy and uncover old and new spiritual issues for the caregiver.

Community Coordination

27. Spiritual resources are available within the community and can make a valuable contribution to the care of the dying patient.

28. No one caregiver can be expected to understand or address all the spiritual concerns of patients and families.

Education and Research

29. Contemporary education for health care professionals often lacks reference to the spiritual dimension of care.

30. Education in spiritual care is impeded by a lack of fundamental research.

31. Freedom from bias is a problem in the conduct of research into spiritual care.

PRINCIPLES

1. In the total care of a person, his or her spiritual nature must be considered along with the mental, emotional and physical dimensions.

2. Caregivers working with dying and bereaved persons should be sensitive to this interrelationship.

3. Persons involved in this circumstances may wish to give spiritual questions time and attention.

4. No single approach to spiritual care is satisfactory for all in a multicultural society; many kinds of resources are needed.

5. A broad range of opportunities for expressing and enhancing one's spirituality should be available and accessible.

6. Care should be taken to offer settings which will accommodate individual preference as well as communal experience.

7. Health care systems presuming to offer total care should plan for and include spiritual care as reflected in a written statement of philosophy, and resources of time, money and staff.

8. A caring environment should be in place to enhance and promote spiritual work at any time not just at designated times.

9. Caregivers, patients and family members should feel free to express humour and to laugh.

Individual and Family (natural and acquired)

10. Caregivers should be encouraged to understand various belief systems and their symbols as well as to seek to understand an individual's particular interpretation of them.

11. Caregivers should be aware of differences in spirituality within a family or close relationship and be alert to any difficulties which might ensue.

12. Caregivers must be non-intrusive and sensitive to individual desires.

13. Spiritual needs can only be determined through a thoughtful review of spiritual assumptions, beliefs, practices, experiences, goals and perceived needs with the patient, or family and friends.

14. (1) Caregivers should be aware of individual desires and sensitive to unexpressed spiritual needs.

(2) Individuals need access to resources and to people who are committed to deepened exploration of and communication about spiritual issues.

15. Acknowledgments and support, listening to and affirming an individual's beliefs or spiritual concerns should be offered and may be all that is needed.

16. The patient's chosen way of meeting spiritual needs should be honoured by the caregivers.

17. Caregivers need to be alert to the varying spiritual concerns that may be expressed directly or indirectly during different phases of illness.

18. Caregivers should guard against proselytising for particular types of beliefs and practices.

19. (1) Caregivers should be prepared to work with new concerns and insights, as well as those which are longstanding.

(2) Caregivers must recognize that not all spiritual problems can be resolved.

20. Spiritual care of family and friends is an essential component of total care for the dying.

21. Spiritual care may include involvement by caregivers in the funeral and should be available throughout the bereavement period.

CAREGIVERS

22. Caregivers have the right to expect respect for their belief systems.

23. (1) Staff members should be offered skillfully designed opportunities for exploration of values and attitudes about life and death, their meaning and purpose.

(2) Caregivers need to recognize their limitations and make appropriate referrals when the demands for spiritual care exceed their abilities or resources.

24. Caregivers should be aware that they each have the potential for providing spiritual care, as do all human beings, and should be encouraged to offer spiritual care to dying patients and their families as needed.

25. Caregivers and health care institutions should temper spiritual goals with realism.

26. Ongoing spiritual education growth, and renewal, should be a part of a staff support program, as well as a personal priority for each caregiver.

Community Coordination

27. Spiritual counsellors from the community should be integral members of the caregiving team.

28. Staff members addressing the needs of patients and families should utilize spiritual resources and caregivers available in the community.

Education and Research

29. Health care curricula should foster an awareness of the spiritual dimension in the clinical setting.

30. Research about spiritual care is needed to create a foundation of knowledge which will enhance education and enrich and increase the spiritual aspect of the provision of health care.

31. Research should be carried out into the development and application of valid and reliable measures of evaluation.


International Work Group on Death, Dying and Bereavement

A Statement of Assumptions and Principles Concerning Education About Death, Dying and Bereavement

Developed by the Education Work Group of the IWGDDB

Introduction:

Death, dying and bereavement are fundamental and pervasive aspects of the human experience. Individuals and societies can only achieve fullness of living by understanding and appreciating these realities The absence of such understanding and appreciation may result in unnecessary suffering, loss of dignity, alienation, and diminished quality of living.

Therefore, education about death, dying and bereavement is an essential component of the educational process at all levels, both formal and informal.

General Assumptions:

Education about death, dying and bereavement is important for:

1. Optimizing the potential for human development throughout the life span.

2. Understanding the impact of technology on human life.

3. Achieving equitable allocation of scarce socioeconomic resources.

4. Coping with social systems and social changes.

5. Coping with cross-cultural movement and interaction.

6. Helping to cope with global issues, e.g. nuclear processes and dangers, terrorism, war, world hunger, and population growth.

Therefore, education about death, dying and bereavement needs to be directed to all segments of populations worldwide.

Goals:

The aim of education about death, dying and bereavement is to contribute to general education as a basis for personal development and responsible social participation. It must also contribute to the specific education of those who, as a result of personal or professional circumstances, are closely associated with dying, death and bereavement.

The following assumptions and principles have been prepared as an aid for those who are considering planning, or implementing educational programs about death, dying and bereavement. They are intended for those involved in education about death, dying and bereavement in society at large, including local communities and educational systems.

Assumptions

1. In the human cycle, encounters with personal mortality, life-threatening situations, dying, loss and bereavement are centrally important.

2. Encounters with personal morality, life-threatening situations, dying, loss, and bereavement have potentially profound psychological, physical, spiritual, intellectual, behavioral, social and cultural impacts upon the individual.

3. Death loss and threat to life are often experienced as unpredictable, unchosen and uncontrollable. Still, some forms of choice and control are often possible as persons and societies define appropriate and meaningful responses.

4. The manner of coping with personal mortality, life-threatening situations, dying, loss and bereavement is pivotally important for sustained individual well being and meaningful living.

5. Awareness of, and sensitivity to, the needs of others who are encountering personal mortality, life-threatening situations, dying, loss and bereavement are fundamental to enhance sustained quality of social life.

6. Social context, technology, cultural values, traditions, rituals and policy influence patterns of individual and collective responses to death-related phenomena.

7. People make choices, the consequences of which affect both quality and quantity of life for themselves and for others.

8. A curriculum is a statement of priorities in education.

9. Individuals bring to their educational programs experiences that have emerged from a diversity of social, cultural and religious backgrounds.

10. Individuals have a range of exposure and responses to loss and death-related experiences.

11. Encounters with loss and other death-related phenomena are a part of human experience from earliest childhood.

12. Individual's understanding and patterns of coping with loss-related experiences vary along the life span.

13. Individuals who offer informal and formal education in this field provide instruction to teach children and adults about encounters with personal mortality, life-threatening situations, dying, loss and bereavement.

14. Research and evaluation are means for assessing the effectiveness of educational efforts.

Principles

1. Because of their central importance, addressing such encounters should be integral to education in society at large, local communities and educational systems. Such education should address:

(a) the universality of death (all living things will one day die),

(b) the irreversibility of death (the physical reality of death is permanent), and

(c) the human limitation and vulnerability revealed within such encounters.

2. Education should address:

(a) the subjective significance of these encounters,

(b) the variety of impacts upon individuals, and

(c) factors influencing the form, strength and duration of these impacts.

3. Education should:

(a) speak to experiences of helplessness and hopelessness,

(b) identify forces influencing these experiences, and

(c) speak to possible means to counteract such forces, identify possible choices and recover hope through promotion of choice and control where they are possible.

4. Education should address:

(a) the importance of individual coping,

(b) a range of alternative coping responses,

(c) the fact that for individuals some responses are more effective than others, and

(d) the value of a social support system for effective coping.

5. Education should:

(a) promote awareness and sensitivity to the needs of others encountering death-related phenomena, and

(b) develop abilities to respond effectively in a word and deed to those needs.

6. Because no loss occurs in isolation from these influences, education should:

(a) address the variety of social and cultural influences upon individual and collective responses to death related phenomena,

(b) promote understanding of influences upon the patterns of death and dying themselves within societies, and

(c) promote understanding of global issues (e.g. nuclear processes and dangers, terrorism, war, world hunger, and population growth), their death-related consequences, and alternative approaches.

7. Education should:

(a) address moral responsibility for decisions about life and death and related ethical issues, such as,

(i) accepting or refusing, providing or withholding life-saving treatments,

(ii) suicide, and

(iii) active euthanasia.

(b) the rationality of such decisions,

(c) the ethics of such decisions,

(d) the implications of proxy decision making, and

(e) the appropriateness of governmental and institutional policies and practices related to such decision making.

8. Education should:

(a) draw upon the assumptions and principles contained in this document in setting its priorities,

(b) be based on the current state of knowledge from a variety of disciplines,

(c) integrate theory and practice, and

(d) incorporate emotional support and foster confidence.

9. Educational approaches should be appropriate to audience, subject matter, context and goals.

Education should provide for:

(a) appreciation and utilization of individual differences,

(b) sharing of experiences, and

(c) promotion of personal growth.

10. Education needs to develop appropriate strategies to increase exposure to loss and death-related experiences.

Educators have a responsibility to anticipate and be sensitive to the death-related experiences of their students, and be prepared to provide appropriate support.

11. Education for dealing with death-related experiences should begin in early childhood and become an integral part of formal education.

12. Whatever the context, education should:

(a) reflect sensitivity to level of intellectual development, and

(b) support the development of coping capacities in an age-appropriate manner.

13. Preparation for these responsibilities in informal and formal education about death, dying and bereavement should:

(a) promote awareness of, and sensitivity to, the distinctive needs and responsibilities of the diverse populations served,

(b) develop knowledge bases appropriate to distinctive instructional missions, and

(c) develop skills essential to effective instruction.

14. Research should systematically describe the educational process in the field of death, dying and bereavement to permit replication of successful educational efforts.

Research should examine the effect of education about death, dying and bereavement on knowledge, attitudes and behaviours.

Research findings should be used to revise educational efforts in order to improve their effectiveness.


A Statement of Assumptions and Principles Concerning Education about Death, Dying and Bereavement for Professionals in Health Care and Human Services

Developed by the Education Work Group of the International Work Group on Death, Dying and Bereavement

Introduction

These assumptions and principles are intended as an aid for those concerned with education about death, dying and bereavement for professionals in health care and human services.

This education is designed for a wide range of occupations and roles. These include both those who have direct responsibility for the care of individuals and families coping with life-threatening situations, dying and bereavement, as well as those who have indirect or occasional responsibility in such circumstances.

Assumptions

1. Services and resources allocated to those who are coping with life-threatening situations, dying and bereavement reflect basic values of individuals, society and the health care system.

2. A curriculum is a statement of priorities in education.

3. Health care and human service professionals have a variety of fundamental and inescapable roles to play in the care of individuals and families coping with life-threatening situations, dying and bereavement.

4. The public has a right to expect that health care and human service professionals will be able to respond effectively in caring for the dying and the bereaved.

5. Individuals bring to their educational programs experiences that have emerged from a diversity of social, cultural and religious backgrounds.

6. Individuals will have a range of exposure and responses to loss and death-related experiences.

7. Care of individuals and families who are coping with life-threatening situations, dying and bereavement requires the involvement and cooperation of personnel from many disciplines.

8. Health care and human service professionals have a long-term impact on the care of individuals and families who are coping with life-threatening situations, dying and bereavement through their involvement in health care and human service systems, and by their roles in educating the next generation of health care and human service professionals.

9. The ability to help others also involves the ability to help oneself.

10. Changes in society and in the context for health care and human services are never-ending, even as exploration of issues related to death, dying and bereavement is ongoing.

11. Individuals who offer formal or clinical education in the field of death, dying and bereavement provide instruction to prepare health care and human service professionals for their death-related roles.

12. Research is required to evaluate varying strategies for education about death, dying and bereavement for health care and human service professionals.

13. Research is required to evaluate the effectiveness of education about death, dying and bereavement in meeting its goals.

Principles

1. Education about dying, death and bereavement should be a required, distinct and substantive part of the core education of all health care and human service professionals.

3. Education about death, dying and bereavement should:

(a) be based on the current state of knowledge from a variety of disciplines,

(b) integrate theory and practice,

(c) promote sensitivity, awareness and skills development through role modeling and supervised practice, and

(d) provide emotional support and foster confidence.

5. Education about death, dying and bereavement should provide for:

(a) appreciation and utilization of individual differences,

(b) sharing of experiences, and

(c) promotion of personal growth.

6. Education about death, dying and bereavement needs to develop appropriate strategies to increase exposure to loss and death-related experiences.

Educators have a responsibility to anticipate and be sensitive to the death-related experiences of their students, and be prepared to provide appropriate support.

7. Education about death, dying and bereavement should be interdisciplinary in nature, that is, it should examine perspectives from different disciplines and demonstrate relationships among

8. Education about death, dying and bereavement should:

(a) include awareness of how social context, values and policy making influence such care, and

(b) foster the ability of health care and human service professionals to serve as agents for constructive change.

9. Education about death, dying and bereavement should:

(a) enhance the ability of professionals to identify and meet their own needs, and

(b) provide an awareness of the resource available to professionals for their own use.

10. Continuing education about death, dying and bereavement is necessary to respond to social changes and to address developments in death-related issues.

11. Preparation for individuals who assume responsibilities for offering formal or clinical education in the field of death, dying and bereavement should:

(a) promote awareness of, and sensitivity to, distinctive needs and responsibilities of the diverse populations to be served,

(b) develop knowledge bases appropriate to distinctive instructional missions, and

(c) develop skills essential to effective instruction.

12. Research should systematically describe the process of education about death, dying and bereavement in order to permit replication of successful programs.

13. Research findings should be used to revise educational programs about death, dying and bereavement in order to improve their effectiveness and outcomes.

Research should examine effects of education about death, dying and bereavement on outcomes for the dying and the bereaved.

Research should examine the effects of education about death, dying and bereavement on knowledge, attitudes and behaviours of health care and human service providers.



Eulogies

Selected passages from tributes to Dr. Dorothy C.H. Ley at her funeral in Beaverton and, later, at her memorial service at St. James Cathedral in Toronto.

The Right Reverend Geoffrey Parke-Taylor, M.A., D.D., Suffragan Bishop of Toronto (retired)

This is a very sad time for all of us, especially for Dr. Dorothy Ley's family and a wide circle of friends. Many have travelled long distances to be present at this service today. Faithful vigil at her bedside was kept by Norma and Bill, Marlene and Steve, Barbara, Peter, Susie, Betty, Charlotte, Dorothy, Anne, Doreen and many others -- as well as the care given by doctors, nurses and clergy. She received visits from our Area Bishop, Bishop Blackwell; Bishop Finlay, our Diocesan Bishop, drove up from Toronto as recently as Saturday [a few days before her death] to see her, bless her, and bid her farewell. This has been a wonderful demonstration of what it means to care -- palliative care at its best, fully in accord with what Dorothy herself taught and practised.

This is indeed a time of sadness for members of this parish and this community. Yet this is also a time for profound and joyful thanksgiving. We give thanks for Dorothy's life and distinguished career as a physician, active member of the church and leader in the community.

The two words which best describe Dorothy's long struggle with cancer are courage and faith. She has faced surgery, radiation and chemotherapy with great courage, continuing with all her many commitments and responsibilities well beyond the call of duty, relinquishing them only when she no longer had the physical strength to carry on. Her faith has always been her main resource, a deep and abiding faith which sustained her and give her special courage. She knew full well that God has made us not for this life only but for all eternity. For her, life was to be lived under the sovereignty of Jesus Christ, who is Lord of all. His victory over death is now the supreme reality, as she lives for evermore in His presence.

Bishop Brent, born in Canada, and a leader in the ecumenical movement, has this to say about life beyond death: "What is dying? I am standing on a shore. A ship sails to the morning breeze and starts for the ocean. She is an object of beauty and I stand watching her till at last she fades on the horizon and someone at my side says, 'She is gone' -- Gone where? Gone from my sight, that is all. She is just as she was when I saw her, and just as able to bear her load of living freight to its destination. The diminished size and total loss of sight is in me, not in her; and just at the moment when someone at my side says, 'She is gone' -- there are others who are watching her coming, and other voices on another shore take up a glad shout, 'Here she comes' -- and that, that is dying."

We rejoice as we entrust Dorothy into the infinite care of God and the peace and love which know no ending.

Dr. Larry Librach, Director, Division of Palliative Medicine, Mount Sinai Hospital, Toronto

In my Jewish faith, there is a tradition in our teachings saying that each person has three names:

1.the name we are born with, i.e. the name of our ancestors -- it signifies our heritage,

2.the name our parents give us, i.e. the part of our personhood that derives from what our parents teach us and how we are moulded by our family,

  1. 3.and finally, the name we make for ourselves as we travel the journey of life.


My role today is to briefly describe the name that Dr. Dorothy Ley made for herself in the area of palliative care.

Dorothy used to delight in telling people that she taught me everything that I know. I was a student of hers in my third year of undergraduate medicine. I then was privileged to work with her when I was an intern at Toronto Western Hospital. I remember her well. She was a thorough and very knowledgeable physician who was dedicated to her patients. She always expressed considerable concern for the terminally-ill cancer patients she served as a haematologist-oncologist. These were the days that so many terminally-ill cancer patients were treated almost as pariahs in hospitals. Dorothy at that time was known for her devotion and humanity towards these patients and she expected the same from interns and residents who trained with her.

The important projects that she began and completed during her tenure as president of the [Palliative Care] Foundation included:

•the Palliative Care Directory

•the palliative care resource centre; a centralized collection of educational materials of all sorts intended as a national resource

•the founding of the biennial National Palliative Care Conferences

•the founding of the Journal of Palliative Care

•a series of Pain Control seminars across Canada

•multiple public forums to disseminate information about palliative care all across Canada

•planning consultations for the establishment of palliative care services and programs across Canada

•many different speaking engagements on the topic of palliative care

•advocacy at government and at organizational levels

•building bridges internationally in the field of palliative care.


Dorothy experienced first hand the need for adequate Home Care services when she looked after [her cousin] Donnie at home. She then became even more committed to developing home-based palliative care services. She directed the task force on palliative care for the Metro Toronto District Health Council through its 18 months of deliberations even though she was weakened by her disease and often in considerable distress from her disease and the chemotherapy.

One of the legacies of Dorothy's involvement in palliative care is, of course, the hospice that bears her name. I remember her calling me once about some matter and at the end of the call asking me my advice about the proposal to name a hospice program after her. She wondered whether she had made that much of contribution to deserve such an honour. Frankly, the other thing that bothered her was the fact as she expressed it, that, "I'm not dead yet! Why do they want to do this anyway?" However, she allowed the hospice to be named after her and it will survive as one of the memorials to her.

These few words are a brief testimony to our colleague and friend, Dr. Dorothy Ley, and her involvement in palliative care. I will remember her for her warmth. I will remember her for the courage she showed during her cancer illness. I will remember her for her dogged determination and dedication to the development of palliative care.

We will all remember her for her contributions as one of the founders and pioneers of palliative care in Canada. May she rest well and in peace in the hands of G-d.

Elizabeth Latimer, M.D., C.C.F.P., F.C.F.P., Representing the Ontario Medical Association

It is an honour to remember Dr. Dorothy Ley whom I knew as a colleague, friend, role model and mentor. As a colleague, Dorothy was a physician in the true sense of the word. She cared about people -- her patients and her colleagues. Throughout her career, she made herself available to patients for the alleviation of their suffering.

Dorothy always worked towards excellence and espoused and, indeed lived, the values of integrity and true dignity. She truly believed in whole-person care -- caring for the person, not the "patient" or the "disease". In her work, she truly believed in interdisciplinary care, valuing the involvement of every profession and person who could help.

Dorothy spoke accurately and eloquently in support of effective care of the dying in Canada. She continually challenged large organizations and health care systems to assume their rightful role and responsibility for this care. She spoke openly and honestly for the values and standards of care in which she believed.

For me personally, Dorothy represented an exemplary role model of a female physician; someone who practised with energy, skill and dedication; someone who was able to achieve admirable levels of effectiveness, locally, nationally and internationally and never lost her sense of herself. Truly she was a pioneer in Canada, as a woman and as a physician.

As a friend, I always admired Dorothy's courage, her candour, her faith and her sense of humour and fun. I know that these qualities, combined with her love of her home, family and friends and her little dog, helped to carry her through her illness. Dorothy possessed a remarkable sensitivity to the poignancy and power of our shared human situation. We will miss her.

Reverend Douglas Graydon, Coordinator, Counselling Services, Casey House Hospice, Toronto

How is one supposed to feel when a mentor dies? I have known Dorothy for may years. She and I share Christian roots and she had a powerful presence within the Anglican Church.

I first heard of Dorothy at a workshop on palliative care: I can't remember where or when, but I do remember her encouraging my interest in palliative care, its philosophy and development. I remember her passion and dedication towards maintaining the integrity, dignity and autonomy of patients. I remember her gentleness and sensitivity. And I also remember her impatience with her own profession as she struggled to teach other physicians the importance of tending not only to the physical pain of their patients, but the emotional and spiritual pain as well.

Dorothy was active in the creation of Casey House Hospice; the only free-standing AIDS hospice in Canada. She was one of our first members of the Board of Directors and contributed to shaping Casey House into what it is today.

Dorothy and I, however, worked most closely together on the Anglican Church's AIDS Committee. She struggled with the Diocese of Toronto as it tried to articulate its pastoral response to AIDS. She was an extraordinary resource and was one of the principal architects in formulating a church response which will grow and develop into the future because of her contribution.

Dorothy's dedication to better society was felt in many ways. One such example was her quiet commitment to the growth and development of THE TERESA GROUP, the only community-based volunteer organization in Canada which provides emotional and practical support to families with HIV postive children.

Dorothy Ley was a mentor of mine. She embodied a sense of compassion and commitment which I admired. She pushed me into areas and realms of challenge and learning which have taught me lessons which will stand the test of time. She changed my perceptions and deepened my understanding of palliative care, faith and what it means to serve humanity.

I will miss Dorothy's knowledge, her humour, her gentle ways. I will miss sitting in her yard on the shores of Lake Simcoe discussing medicine, theology and "life in general". I will, however, always celebrate the fact that she was part of my life.

Homily given by the Right Reverend Terence E. Finlay, Bishop of Toronto

Dorothy Ley touched all of us in a variety of ways. This afternoon we have heard some of these wonderful stories. For me she possessed an intuitive sense of when to be present, when to call, when to care for another. I am sure that each of you could add many more stories. For many of us, within the context of the Christian community, she was a woman of faith, of conviction, a follower of Jesus Christ. Last Wednesday, Ash Wednesday, we participated in a strange tradition, for some, of having the sign of the cross made on our foreheads in the ashes which come from the burning of the Palm branches from Palm Sunday last year. It reminded us of our mortality, "out of dust were we created and to dust we shall return," but also it recalled our baptism when we are signed with the cross and marked as Christ's own forever. The cross is a sign of our identity. A mark of those who identify, whose life and work are tied to the person and work of Jesus Christ:

  1. a life proclaiming good news

  2. a life of living reconciliation

  3. a life of welcoming, befriending, of reaching out and loving others.


Yes, a life that leads to death, but beyond death, to resurrection.


Dorothy's life proclaimed good news. She worked to bring healing and life. She lived by reaching out in concern and compassion for others. In a death-denying, death-avoiding society, Dorothy has much to teach us.


Those who were with her during those last hours know that it was with a quiet confidence and radiant serenity that she boldly faced up to that which the world spends so much time and money running away from. I am sure it was not easy for her to face her own death, because she spent so much of her life working to preserve the lives of others. But she was able to do so, not so much because she believed in eternal life, but because she had a bold, confident faith in the eternal love of God. Dorothy's hope as she faced death was the same hope which sustains the Christian throughout life; that the God who has created us and claimed us from our birth, the God who loves us and grasps us in life, will continue to claim us and love us and grasp us, even in death.


And so we commend to the care of a loving and faithful creator, the soul of our friend Dorothy Ley, a cherished child of God, who bore on her brow and in her life the sign of the cross -- marked as Christ's own forever.


Rest eternal grant unto her, O Lord and let light perpetual shine upon her. May she rest in peace. Amen.


The following Psalm 23 was read at Dr. Ley's funeral held at St. Paul's Anglican Church in Beaverton, Ontario on February 3, 1994.

The Lord is my shepherd;
I shall not want.
He maketh me to lie down in green pastures;
He leadeth me beside the still waters.
He restoreth my soul;
He leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk
through the valley of the shadow of death,
I will fear no evil;
for Thou are with me;
Thy rod and Thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies;
Thou annointest my head with oil;
my cup runneth over.
Surely goodness and mercy
shall follow me all the days of my life:
and I will dwell in the
house of the Lord for ever.

The Heart of Hospice


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Copyright © 1994 Harry van Bommel

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