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Responding to Complex Needs

This section addresses the issues of power of attorney, walking with families in difficult times, circles of support around individuals who are seriously ill and palliative care.

As we age and experience loss of abilities we enter into a stage of more complex end-of-life care. Barriers associated with social status, education and ability fall away, and we become aware of our common humanity.

Documents

Circles of Support and Decision Making
This document was created in response to the questions of when, how and who decides if a person with a disability needs to move from a home to long term care, hospice or other alternative settings. Circles of support and decision making have been an important aspect in responding to those questions.
Walking Together
A brief testimonial shares some of the experience lived in L’Arche Ottawa, and the wisdom acquired, as they have walked with families and people with developmental disabilities through aging and dying.
Power of Attorney Questionnaire
The following questionnaire is a useful tool in helping a person with an intellectual disability express clearly their wishes for a power of attorney for property, power of attorney for personal care and a living will.
Advance Care Directives
Form composed of 4 levels of care for advance care directives.
About Palliative Care
"Real presence is more than the attention of a spectator. It is giving oneself as participant in a relationship. It is presence born out of availability and a spirit of quietness. It requires receiving a presence as well as giving one’s own."
Marsden, 1990

 

Dying is a core experience of our life’s journey.
In L’Arche we try to face death and walk with our brothers and sisters as they live their journey of dying. We believe that dying is a phase of life in which each person’s gifts can be further revealed when they are held well by a caring community.
This power point compiled by Jane Powell will examine the essential elements of palliative care, the differences and similarities between the palliative care and disability sectors, definitions of quality of life and the usual composition of a palliative care team.

Resources and Links

Health Canada (English and French)

  • seniors section (publications) provides palliative care info-sheet


Canadian Palliative Care Association (English)

  • where to find resources in palliative care, pain management, hospice care


Canadian Virtual Hospice

  • is a reputable source of information and support for palliative care.
  • topics include symptoms/managing pain, practical guide for providing care, health care directives, spiritual health/rituals to comfort families, considerations for a home death, grief


Ontario Ministry of Health and Long Term Care (English/French)

  • home, community and residential care for seniors
  • finding long term care facilities
  • in Senior’s Care: go to long-term care homes, choosing a home to find a residential care checklist to help assess different facilities as you visit them


Community Care Access Centres and CLSC (in Quebec)

  • support, resources, and documentation for palliative care and long-term facilities
  • directory of health care services in Quebec, including CLSC, long-term care facilities, palliative care, home support


McGill University: Council on Palliative Care (English/ French)

  • questions and answers on Palliative Care, where to find resources, many free on-line books and resources


Quebec Association of Palliative Care (French)

  • where to find an exhaustive directory of resources and documentation, palliative care associations across Quebec and Canada (see documentation section-links)
  • find power points from conferences (documentation section).
  • See 2006: “Sacré souffrance, Souffrance Sacré” on understanding and responding to suffering and recognizing how it can help one to grow
  • Spirituality and End of Life Rituals


Edmonton Palliative Care Program (English)

  • provides good, clear information on palliative care, the role of different care professionals, personal directives, organ donation, grief and bereavement, etc.


Hospice Foundation of America (English)

  • contains information on caring for the caregiver, caring for someone who is dying, the dying process


Centre for Excellence in Aging Services

  •  end of life care for persons with developmental disabilities


Canadian Resource for Pain Management (English/French)

  • for health-care professionals only
  • most palliative care units have experts on pain control and management of symptoms (refer to Palliative Care Associations near you)


Community Legal Information Ontario (English/French)

  •  interesting articles in accessible language, includes information on power of attorney


Quebec Government (English/ French)

  • Citizen’s Services provide information on mandates in case of incapacity


Curateur public du Québec (English/French)

  • provides information on mandate in case of incapacity and consent to care, definition, role and power of attorney forms. The Service of Consent to Care may also be reached by phone at 1-800-363-9020

Justice Québec (French)

  • legal questions, mandates in case of loss of autonomy, health and consent to medical care


Advocacy Centre for the Elderly (English)

  • community-based legal clinic
  • information on elder abuse, advance care planning, long-term care homes, consent and capacity, power of attorney


Community Legal Clinics

  • offer free legal advice on a variety of topics


deVeber Institute:

  • Talks and discussion about palliative care and ethical concerns at end-of-life. Speakers are Susan Morgan (community chaplain with St. Elizabeth Health Care),Dr. Paul Zeni (family physician and palliative care consultant) and Jane Powell (L’Arche assistant and graduate of Grief and Bereavement program)
  • The DVD of the event hosted by the The deVeber Institute and L’Arche Toronto is available from The deVeber Institute for $20. To order it: contact Elaine Zettel at The deVeber Institute at: bioethics@deveber.org or 416-256- 0555

Books

Books Beyond Words (any language)

  • Series of very well- illustrated pictorial books that can be used for any language:
  • for people with disabilities Am I Going To Die? looks at dealing with both physical deterioration and the emotional aspects of dying and includes guidelines for caregivers and those supporting people with disabilities who are terminally ill.


Down’s Syndrome Scotland Association (English)

  • Books which are clear, simple, and well-illustrated
  • Let’s Talk About Death for people with a developmental disability, talks about death and burial.


Council on Palliative Care

  • many reading resources including:
    Caring for Loved Ones at Home     (Harry Van Bommel) ISBN 1-55307-016-X
    Soigner un Etre Cher à Domicile     (Harry Van Bommel) (French)

 

  • excellent, illustrated, easy to follow guide to short and long-term care
  • includes living with a dying person, detailed information on hygiene, daily care, nutrition, adapting the home, visiting, dialogue with doctors and caregivers, creating a support team, keeping a sense of humor, etc.


American Association for Intellectual Disabilities (English)

  • People Planning Ahead ISBN 978-940898-98-1 (includes CD)
  • guide to communicating health care and end of life wishes
  • rituals of comfort


British Institute of Learning Disabilities (English)

  • Caring for People with Learning Disabilities who are Dying (Noelle Blackman and Stuart Todd) ISBN 1 903269 172 C7.50
  • full of practical advice; addresses mortality and disabilities, telling someone they are dying, working with families and professionals, care issues, funerals, bereavement support


Hospice Foundation of America (English)

  • The Dying Process
    The Four Things that Matter Most     (Ira Byock) ISBN 0743249097 (English)
  • Saying goodbye, healing relationships
    Dying Well: The Prospect of Growth at the End of Life     (Ira Byock) ISBN 1573226572 (English)
  • doctor and authority on palliative and end of life care
  • stories of dying patients and families and finding meaning in the transition to death


Two books from the Canadian Housing and Mortgage Corporation At Home with Alzheimer’s, Maintaining Seniors ’ Independence through Home Adaptations and the Safe Living Guide are available. They may be helpful in pointing out things that may be unsafe and giving suggestions of ways to make the situation safer.

  • At Home With Alzheimer's Disease
  • Maintaining Seniors' Independence Through Home Adaptations — A Self-Assessment Guide

 

Living with Learning Disabilities, Dying with Cancer
Irene Tuffrey-Wijne (Foreword by Sheila Hollins)

ISBN: 978-1-84905-027-2, BIC 2: JKSN2. This book of thirteen personal stories will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who have cancer and who are dying, including health and social care professionals, families and friends.

“There’s something in the history of humanity that shows being human is to care for the weak.”
Jean Vanier