About Palliative Care

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About Palliative Care
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Introduction

• We have experienced and will continue to
  experience deaths of those we support. We need
  to have a basic understanding of palliative care
  in order to determine when it is the most
  appropriate type of care.
• This power point will look at
• the essential elements of palliative care
• differences and similarities of the palliative
  care and disability sectors
• quality of life
• the usual composition of a palliative care team

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• A Story From LArche
• Paul was in his mid-twenties. In addition to
  being developmentally disabled and a victim of
  strokes, he was a hemophilic whose blood
  transfusion had led to his contracting aids.
  Despite his many afflictions, Paul faced his
  approaching death serenely. About two weeks
  before his death two of us were sitting at Pauls
  bedside and I asked him if he was okay. Okay?
  he responded, and looking at the assistant by his
  side asked, Do you love me? she was startled
  but replied that she did love him that the care
  she gave him was a sign of her love. Turning to
  me, Paul asked Does God love me? I answered him
  that God loved him. Then Paul said Well, if you
  love me and God loves me, Im okay. From
  Flowers of the Ark

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Critical Elements of Palliative Care

• These are taken from the Health and Welfare
  Canada, Palliative Care Services Guidelines,
  Ottawa, 1989
• 1) Death is seen as a natural part of life and is
  acknowledged rather than seen as a failure or
  something which must always be fought against to
  the very end.

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• 2)The unit of care is both the patient and the
  loved ones although death is personal, its
  meaning and impact are wider. The family must be
  integrally included in planning and care.

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• 3. Palliative care upholds the basic dignity and
  worth of humankind whether living or dying.
  People who are dying are still living and have
  the right to be in control of their lives,
  including refusal of treatment or the
  continuation of it.

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• 4. The primary intent of care is palliative or
  comfort oriented. The relief of distressing
  symptoms, especially physical is paramount.

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• 5. The needs of the terminally ill are often
  diverse and best met by a variety of skills from
  professional disciplines, volunteers and the
  family.

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• 6. Coordination and consistency of care are
  essential
• among the disciplines and between
  facilities.

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• 7. Creation of home wherever that may be is
• necessary for proper care.

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• 8. Grief support for the family (loved ones)
  following death is an essential part of care for
  the dying.

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• 9. Support for caregivers is essential to their
  ability to continue to continue working
  effectively in an area of pain, death and loss.

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Similarities in the Disability Service Model and
the Palliative Care Model

• BOTH
• are person centered.
• recognize that team is important.
• know that good communication can improve quality
  of life.

• put us in front of ethical questions
• provide opportunities to advocate for the person
  receiving services
• encourage control/choice by the person receiving
  services.

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Some differences

• Palliative Care will likely involve more medical
  care than is usual in the disability sector.
• People will not likely learn new skills when
  receiving palliative care but will spend more
  time and energy maintaining independence and
  integrating ones life experiences.
• Palliative care may require more partnering with
  other agencies than before.

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More differences

• Ethical questions will be more significant as we
  need to make choices around end of life care
  particularly if it is difficult to know the
  disabled person's wishes.
• The team providing palliative care will usually
  be larger than teams in the disability sector.
• Quality of life issues will likely come more into
  focus when providing palliative care even though
  they are already significant in the disability
  sector.

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Definitions of Quality of life

• Quality of life is someones satisfaction or
  happiness in life in the areas that they consider
  important.
• from Positive Approaches to
  Palliative Care
• Well being as defined by each individual. It
  relates to experiences that are meaningful and
  valuable to the individual and his/her capacity
  to have such experiences.
• from a consensus Model to Guide Hospice
  Palliative Care

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Some Questions to Consider

• What are the things that you consider add to your
  quality of life?
• Consider a person with an intellectual disability
  that you know well what things might they think
  add to their quality of life?
• Is their much difference between the two?
• How might quality of life change as someone gets
  closer to death?

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People who may be part of the Palliative Care Team

• Person who is terminally ill
• Family
• Friends (including others with an intellectual
  disability
• Support workers/managers from the agency

• Family Doctor
• Palliative care Doctor and Nurses
• Occupational Therapist
• Speech and language therapist
• Chaplain.

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Working Together

• If a person with an intellectual disability is
  to get the best possible care, people in the
  disability sector who know the person well and
  people who provide palliative care, need to work
  closely together. The developmental sector does
  not always know about palliative care and those
  in palliative care may not understand the ways of
  communication and behaviors of those with
  intellectual disabilities.

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In the developmental sector we need to be aware
that

• Staffing will need to be increased when providing
  care for someone who is dying.
• We may have strong relationships with people with
  intellectual disabilities and this may affect our
  ability to provide care positively or negatively.
• It should not be assumed that everyone is
  comfortable caring for someone who is dying.
• Each person needs to take responsibility for
  their own values, feelings, beliefs and
  experiences of death so that they do not
  negatively impact the person who is dying.

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Meeting the needs of the person who is Ill

• Pain and symptom management may be new and
  challenging. Pain can can be expressed in many
  ways.We may need to advocate for the dying
  person.
• There will also be spiritual, emotional and
  social needs that need to be addressed.
• It will be necessary to decide who will tell the
  person what about their illness

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Meeting the needs continued

• Religious and cultural practices and beliefs may
  be important to a dying person so we need to find
  out what these are in order to respect them.
• Each death is unique but the process of dying
  does have some common patterns. It is important
  to be aware of these so they do not come as big
  surprises or cause more concern than necessary.

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At the time of the Death

• Hopefully there will be clear policies and
  procedures in place for the team to follow.
• Death usually feels like a shock even if it is
  expected.
• Look after yourself and those around you the best
  you can but know that extra support will probably
  be needed.

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Remember

• Dying is a core experience of our lifes journey
• Dying is painful yet transformational
• Dying takes place within relationships of
  mutuality.
• In LArche 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 where each persons gifts can be
  further revealed when he/she is held well by a
  caring community.

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Resources

• Contact your local palliative care/ hospice
  providers for support. They should have someone
  that specializes in pain and symptom management.
• Use local grief and bereavement services
  afterwards if it seems they would be helpful.