The Hospice of the Florida Suncoast and VITAS Healthcare Corporation 1 Section 1: The Patient/Family...

The Hospice of the Florida Suncoast and VITAS Healthcare Corporation 1

Section 1:

The Patient/Family Value-Directed Model of Care


Changing Our Approach to CareFrom A Disease Focus to A Patient/Family

Experience Focus


DiseaseFocus

Diagnosis of disease & related symptoms

Curing of disease focused goals

Treatment of disease & alleviation of symptoms

Patient/family identify their end-of-life goals

Assess how symptoms, issues are helping or hindering them from reaching goals

Interventions to reach end-of-life goals

Quality of Life Closure

ExperienceFocus


Focus on the Experience !

Alleviation of suffering

Life Completion and Self-determined Life Closure

Bereavement Support for Survivors


This model is built around three concepts or beliefs learned from caring for dying patients and their families:

We live and die as multidimensional beings...having physical dimensions, spiritual dimensions, social/emotional dimensions.

No dimension exists or functions alone....when one dimension changes, it affects other dimensions.

When we pay attention to all dimensions and this dynamic relationship between them, we can then best affect quality of life closure for dying patients and their families.


Patient-Family Value Directed Model of Care

1. Dying is a personal experience

2. People experience the last phase of life through many related dimensions

3. The last phase of life provides continued opportunity for positive growth & development in the face of suffering


1. Dying is a Personal Experience:

Creating Quality EOL Experiences

Choice

Advocacy

Compassion

Dignity


2. People experience the last phase of life through many related dimensions

Five Dimensions

Symptom/Physical

Function

Interpersonal

Well-being (intrapersonal)

Transcendent/Spiritual


No dimension exists or functions alone....

when one dimension changes, it effects other dimensions……

And quality of life closure


What Affects Quality of Life Closure?

As Symptom &Function

DimensionsDecline

InterpersonalWell-being

TranscendentDimensions Increase

In Importance


How does an issue/problem/opportunity in one dimension affect others?

Anxiety affect physical state

Physical pain affect one’s ability to focus on communicating life closure

Spiritual fears affect readiness to die

Immobility affect ability to attend to spiritual needs


Mr. Carey, a patient with cancer of the bone has suffered a pathological fracture of his right arm....Physical dimension

Due to this pain, he is confined to his bed unable to fully bathe and toilet independently....Function dimension

Because any movement is difficult - he is no longer able to leave his room and is isolated from family and friends.....Interpersonal dimension

As a result he begins questioning “Why is this happening to me?”, “What did I do to deserve this?”….Spiritual dimension

He is feeling depressed and guilty because he can’t be self sufficient....Well-being dimension


How is this affecting his family - wife?

His wife can’t stand watching his suffering.....feeling helpless to change it.....asking God, “Why are you allowing him to suffer?”....Spiritual dimension

Since he can no longer care for himself independently

she is doing all his personal care and is becoming exhausted....Physical dimension

She is no longer able to rationalize his angry outbursts and lashes back at him....Interpersonal dimension

When she does stop to think about his suffering, she feels guilty for lashing out and feels like she is so inadequate. How could she blame him?....Well-being dimension


How does an issue/problem/opportunity for growth affect the patient/family quality of life

closure?Physical pain (physical). This not allowing the patient to get out of

bed (functional).This is preventing him from joining family

members in the other rooms for meals, TV viewing, visits (interpersonal).

He is becoming isolated and lonely (well-being).


How does an issue/problem/opportunity for growth affect the patient/family quality of life

closure?

Patient has guilt over past “sins” (spiritual).

He is refusing any pain medications because he feels he needs to suffer to have a place in heaven (physical).

His pain is so severe that he is angry at anyone trying to help him (interpersonal).


3. The Last Phase of Life Provides Continued Opportunity for Positive Growth in the Face of Suffering


Life Closure: A Personal Experience


Surrenderto Unknown

“Letting Go”

The Hospice of the Florida Suncoast and VITAS Healthcare Corporation 1 Section 1: The Patient/Family...

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