Improving the Quality of Care To End of Life: Alleviation ... · Palliative Care Team Suggestions...

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)


Patient and Family

The Focus of End-Of-Life Care


•Medical Narratives

•Illness Narratives

•Belief Narratives

Narrative Inquiry

Approach


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)


Research Participants

Confirm ….

Life is pleasant.

Death is peaceful.

It’s the transition that is troublesome!

– Isaac Asimov


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!


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!


Awareness of Dying

4 Categories ….

1. “Closed” Awareness

2. “Suspicion” Awareness

3. “Mutual Pretense”

4. “Open” Awareness


Awareness of Dying

“Mutual Pretense”


Open Awareness …

Hearing Their

Diagnosis


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)


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.


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)


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


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.


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


What Significant Factor Links

Health Care & Spirituality?


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.


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)


Suffering

Three “S” Phases

1. The “Silent” Phase

2. The “Searching” Phase

3. The “Speaking” Phase

Case Study: Michael


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


What Is Palliative Care? Guiding Principles


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


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.


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


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.


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


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


Do Patients Want Physicians To

Address Spiritual Concerns?


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.


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)


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)


• 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


“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


Interventions

That

Foster Hope

Case Study: Dr. Berger

Reflections

Personal and Professional

Liz Siydock

Child Life Specialist

St. Joseph’s Health Centre,

Toronto, Ontario


Families

The

Foundation

of Hope


1. Family

2. Friends

3. Faith

Case Study: Liz Siydock

Three “F” Factors

Encompassing A Peaceful Death


Improving End of Life Care

Patient’s Suggestions …


Palliative Care Team

Suggestions


(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.


Palliative Care Team

Suggestions


(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

Improving the Quality of Care To End of Life: Alleviation ... · Palliative Care Team Suggestions...

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