Improving the Quality of Care
To End of Life:
Alleviation of Suffering
Dr. Brian Berger
Rev. Elaine MacInnis
Elaine MacInnis Research © YCH 2010
Patients Are
Our Best Teachers
It is safe rule to have no teaching
without having a patient for a text …
The best teaching is that taught by
the patient. – Dr. William Osler (1903)
Elaine MacInnis Research © YCH 2010
Patient and Family
The Focus of End-Of-Life Care
Elaine MacInnis Research © YCH 2010
•Medical Narratives
•Illness Narratives
•Belief Narratives
Narrative Inquiry
Approach
Elaine MacInnis Research © YCH 2010
Heideggerian Phenomenology
What It Means To Be A Person …
1. To live in a specific cultural world that encompasses meaningful relationships;
2. To place significance and value on things;
3. To have the ability to be self-interpreting;
4. To maintain an embodied sense of well being;
5. To be understood as a person with a “past” living in the “present” having a “future.” (Leonard, 1994)
Elaine MacInnis Research © YCH 2010
Research Participants
Confirm ….
Life is pleasant.
Death is peaceful.
It’s the transition that is troublesome!
– Isaac Asimov
Elaine MacInnis Research © YCH 2010
Reality Check
Dying In The 21st Century (1/2)
• 242,863 people died in Canada between
mid-2008 and mid-2009.
• 75% of deaths occur in acute care
hospitals or long-term care facilities.
• Each death affects 5 people
1.25 million Canadians!
Elaine MacInnis Research © YCH 2010
Reality Check
Dying In The 21st Century (2/2)
•By 2056 the estimated death rate in Canada
will increase to 480,000 deaths annually.
Quality End-of-Life Care is …
The Right of Every Canadian
• Expect demands for Palliative Care
services to increase sharply!
Elaine MacInnis Research © YCH 2010
Awareness of Dying
4 Categories ….
1. “Closed” Awareness
2. “Suspicion” Awareness
3. “Mutual Pretense”
4. “Open” Awareness
Elaine MacInnis Research © YCH 2010
Awareness of Dying
“Mutual Pretense”
Elaine MacInnis Research © YCH 2010
Open Awareness …
Hearing Their
Diagnosis
Elaine MacInnis Research © YCH 2010
Hearing For The First Time
A Terminal Prognosis
“When I came to understand that my diagnosis was terminal, the picture of my life and future changed dramatically. I was devastated, the future I envisioned was gone. I began to to live with a stopwatch in my hand, counting the moments remaining before my death.”
( Palliative Care Patient)
Elaine MacInnis Research © YCH 2010
Barriers
To Effective Pain Management
• Patients - barriers put up that
prevents them accepting
effectual pain relief.
• Physicians and Health Care
Teams - barriers to offering
effectual pain relief.
Elaine MacInnis Research © YCH 2010
Pain A Conceptual Definition
Pain is subjective and cannot be measured; it
is an intense feeling of discomfort, which
usually indicates tissues have been damaged;
it includes physiological and behavioral
responses. It is invisible and poorly
expressed in words, as a result pain is
frequently not recognized. (St. Marie, 2002)
Elaine MacInnis Research © YCH 2010
Categories of Pain
Case Study – Dr. Berger
Pain can be categorized as:
– Somatic Pain
– Visceral Pain
– Neuropathic Pain
Pain can be classified as:
– Acute
or
– Chronic
Elaine MacInnis Research © YCH 2010
Consequences of Unrelieved
End-of-Life Pain (1/2)
• Causing hopelessness and
powerlessness in patients and
families.
• Consuming energy and focused
attention of the dying.
• Impairing social interactions
between the patient and members
of their family.
Elaine MacInnis Research © YCH 2010
Consequences of Unrelieved
End-of-Life Pain (2/2)
• Hastening death by:
– increasing physiological distress,
– immobility
– thromboemboli, and
– pneumonia
• Causing emotional suffering, hopelessness, and powerlessness
in the health care team.
Case Study: Dr.Berger
Elaine MacInnis Research © YCH 2010
What Significant Factor Links
Health Care & Spirituality?
Elaine MacInnis Research © YCH 2010
Definition …
Suffering
To experience an unanticipated
life threatening illness that
alters or threatens one’s life and
relationships; fear and anxiety
about one’s future; severe
distress that includes anguish,
loss and grief; loneliness,
isolation and exclusion from
normal life activities; and a
sense of hopelessness.
Elaine MacInnis Research © YCH 2010
Seneca’s Voice
An Expression of Suffering …
Who is there in all the world who listens to us?
Here I am, this is me in my nakedness, with my
wounds, my secret grief, my despair, my
betrayal, my pain which I can’t express, my
terror, my abandonment. Oh, listen to me for a
day, an hour, a moment, lest I expire in my
terrible wilderness, my lonely silence. Oh God,
is there no one to listen? (Quoted by Cicely Saunders in Journal of Palliative Care. 1988; 4 (3): 29-32)
Elaine MacInnis Research © YCH 2010
Suffering
Three “S” Phases
1. The “Silent” Phase
2. The “Searching” Phase
3. The “Speaking” Phase
Case Study: Michael
Elaine MacInnis Research © YCH 2010
The Voice of Cicely Saunders
A Compassionate Presence
“The cry of loss may not expect or want an
answer, but only silent listening.”
– Dame Cicely Saunders, 1990, Beyond The Horizon
Elaine MacInnis Research © YCH 2010
What Is Palliative Care? Guiding Principles
Elaine MacInnis Research © YCH 2010
Unavoidable Suffering
Related To Disease Progression
Loss of ….
• Health and Independence
• Personal Self-Care Abilities
• Cognitive Competencies
• Dignity and Self-Worth
• Relationships and Intimacy
• Career and Financial Security
• Future
Elaine MacInnis Research © YCH 2010
Unnecessary& Preventable Suffering Family Conflict Issues
• Disagreement about the
nature of diagnosis..
• Aspects of patient’s care not
understood or agreed upon.
• Conflicting religious views.
• Some family members not
contributing to caregiving.
• Past conflicts surface.
Elaine MacInnis Research © YCH 2010
Preventable Suffering
Iatrogenic Suffering Is …
… The unintended pain,
suffering, and/or adverse
condition that results from
words spoken, activities
and or interactions by
physicians or members of
the interprofessional team.
Case Study: John
Case Study: Mary
Elaine MacInnis Research © YCH 2010
Caregiver Burden & Anxiety
Unexpected Suffering
Family caregivers in this study
were often unprepared for the
time when their loved ones
entered the end stage of living,
and required near acute levels
of care.
The tasks associated with
caregiving often became all
consuming and resulted in
caregiver burden and anxiety.
Elaine MacInnis Research © YCH 2010
Facing Impending Death
Spiritual Issues & Concerns (1/2)
• Abandonment by family/friends
• Abandonment by health care
• Anger
• Despair
• Fear – not being remembered
• Feeling frustrated and out of control
Elaine MacInnis Research © YCH 2010
Facing Impending Death
Spiritual Issues & Concerns (2/2)
• Forgiveness
• Guilt and shame
• Hopelessness
• Loss of meaning and purpose
• Need for reconciliation
• Spiritual pain and suffering
Elaine MacInnis Research © YCH 2010
Do Patients Want Physicians To
Address Spiritual Concerns?
Elaine MacInnis Research © YCH 2010
Admitting Assessment
Religion?
Religion is …
The public expression of a
personal faith. Religion
binds people together
through shared beliefs,
rituals, symbols, stories,
myths and ethical norms.
Elaine MacInnis Research © YCH 2010
Spirituality Is …
Spirituality is an inner aspect of
personhood that yearns for hope in
the midst of despair, for forgiveness
in the midst of anger and hurt, and for
a sense of connection and love in
relationships with others. (Puchalski, 2007)
Elaine MacInnis Research © YCH 2010
Spiritual Well-Being …
A state of mind in which one feels their
life is affirmed in a relationship with God
(as defined by that person), with self, with
their community in an environment that
nurtures and celebrates wholeness. (Moberg, D., 1997)
Elaine MacInnis Research © YCH 2010
Elaine MacInnis Research © YCH 2010
Elaine MacInnis Research © YCH 2010
• Anger
• Guilt
• Blame and or Hatred
• Absence of Meaning
• Alienation from Family and Friends
• Inability to Enjoy Life
• Turning Away From Religion and
• Participation in Religious Activities
Case Study: Franconia
Manifestations Of
“Spiritual” Suffering
Elaine MacInnis Research © YCH 2010
“I HOPE FOR….”
Spiritual History and Needs Assessment © 2010 Rev. Elaine MacInnis
I Individual Cultural Practices
H Hope, Meaning, and Purpose
O Overview – Emotional & Social Needs
P Physical and Medical Needs
E Ethical Decisions – End of Life Care
F Fear –diagnosis, treatment, the future
O Organized Religion, Beliefs & Practices
R Rituals – Spiritual Practices
Adapted from the HOPE Spiritual Assessment Tool
Permission granted by Dr. Gowri Ananadrajah
Elaine MacInnis Research © YCH 2010
Interventions
That
Foster Hope
Case Study: Dr. Berger
Reflections
Personal and Professional
Liz Siydock
Child Life Specialist
St. Joseph’s Health Centre,
Toronto, Ontario
Elaine MacInnis Research © YCH 2010
Families
The
Foundation
of Hope
Elaine MacInnis Research © YCH 2010
1. Family
2. Friends
3. Faith
Case Study: Liz Siydock
Three “F” Factors
Encompassing A Peaceful Death
Elaine MacInnis Research © YCH 2010
Improving End of Life Care
Patient’s Suggestions …
Elaine MacInnis Research © YCH 2010
Palliative Care Team
Suggestions
Improving End of Life Care
(2/2) 1. Convey truthful information regarding the
patient’s diagnosis and prognosis.
2. Ongoing “spiritual” needs assessments
3. Spiritual suffering be treated with the same
priority and urgency as pain and symptom
management.
4. The health care team develop compassionate
communication skills.
Elaine MacInnis Research © YCH 2010
Palliative Care Team
Suggestions
Improving End of Life Care
(2/2)
5. Increase government funding to expand palliative
care services in the community and hospitals.
6. Offer professional emotional and/or spiritual care
as part of end-of-life care.
7. Provide anticipatory loss and grief counseling as
regular part of patient and family care.
8. Provide alternative therapeutic approaches to
terminally ill patients.
Questions
Discussion
Dr. Brian Berger
Liz Siydock
Rev. Elaine MacInnis
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