Transcript About Palliative Care - Aging and Disability | Home

About Palliative Care
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
A Story From L’Arche
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 Paul’s
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, I’m okay.”
From Flowers of the Ark
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.
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.
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.
4. The primary intent of care is palliative or “comfort
oriented”. The relief of distressing symptoms,
especially physical is paramount.
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.
6. Coordination and consistency of care are essential
among the disciplines and between facilities.
7. Creation of “home” – wherever that may be is
necessary for proper care.
8. Grief support for the family (loved ones)
following death is an essential part of care for the
dying.
9. Support for caregivers is essential to their ability
to continue to continue working effectively in an
area of pain, death and loss.
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.

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 one’s life
experiences.

Palliative care may require more partnering with other
agencies than before.
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.
Definitions of Quality of life
Quality of life is someone’s 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
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?
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.

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.
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.

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
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.
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.
Remember
Dying is a core experience of our life’s journey
 Dying is painful yet transformational
 Dying takes place within relationships of mutuality.
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 where each person’s
gifts can be further revealed when he/she is held well by a
caring community.

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.