Realigning Cancer Care To Address Interactional Suffering Debra - - PowerPoint PPT Presentation

Realigning Cancer Care To Address Interactional Suffering

Debra Parker Oliver PhD, MSW Paul Revare Family, Professor of Family Medicine University of Missouri

Conflicts

• No conflicts to report

Rosalynn Carter

“There are only four kinds of people in the world: – Those who have been caregivers, – Those we are currently caregivers, – Those who will be caregivers, – And those who will need caregivers”

Science of Caregiving

• Intensity and duration of

experience are predictors

• f negative health effects
• Higher incidence of chronic

disease

• Depression/Anxiety
• Social Isolation
• Caregiving could be a

diagnosis

Experience of Caregiving

Interactional Suffering

• Lack of Attention (Timely, Full attention)
• Lack of understanding (Thoughts and feelings)
• Lack of Communication (Empathy, hope)
• Lack of Competence (Pall Care; collaboration)
• Issues of Limitation(Med Science, technology)
• Invisible

Health Care Interactional Suffering in Palliative Care. Beng,TS; NgChong Guan;Lim Le Jane;American Journal of Hospice and Palliative Medicine. (2014), 3 (3) pg304.

What is a Labyrinth?

• A circular pathway with one way in that

leads directly to the endpoint. 7 Circuit’s

– Transitions: Changes as you move from one circuit to another – Fork in the Road: Decision points – Blind Alley: Unexpected turn, surprises

My Labyrinth

Entrance

Diagnosis And Treatment Consultation

Interactional Suffering

• Lack of Attention
• Lack of understanding
• Lack of communication
• Lack of competence
• Limitations
• Signals of Invisibility

Blind Alleys

• No Map
• Everyone speaks

a foreign language

Treatment

Interactional Suffering

• Lack of Attention
• Lack of understanding
• Lack of communication
• Lack of competence
• Limitations
• Signals of invisibility

Forks in the Road

• Scans and Symptoms

Waiting

Forks in the Road

• Signs of reoccurrence

Blind Alleys

• False hope

Interactional Suffering

• Lack of Attention
• Lack of understanding
• Lack of communication
• Lack of competence
• Limitations
• Signals of Invisibility

Transition

• Return to caregiving

Reoccurrence

Interactional Suffering

• Lack of Attention
• Lack of understanding
• Lack of communication
• Lack of competence
• Limitations
• Signals of Invisibility

Hospice

• Transitions

– Losses: private space, privacy, home to hospital

Interactional Suffering

• Lack of Attention
• Lack of understanding
• Lack of communication
• Lack of competence

Death

Transitions

• Caregiver to widow

Now to get back through alone Interactional Suffering

No More

Family Centered Care

• 1. Beware of Interactional Suffering
• 2. Watch for Signals of Invisibility
• 3. Invite and Encourage caregiver involvement
• 4. Routinely interact with caregiver
• 5. Speak privately with both patient and caregiver
• 6. Attend to patient and family preferences for

information

• 7. Assign team member to focus on caregiver

Facilitating collaborative and effective family involvement in cancer setting: Guidelines for clinicians(TRIO guidelines) Laidsaar‐Powell, R.; Butow,P.; Boyle,R.; Juraskova,I. (2018) Patient Education and Counseling 101 970‐982.

Easy Individual Fix

• Validate Caregiver

– Respect knowledge

• “What problems have you seen”

– Embrace as a partner

• “What do you think about this plan”

– Recognize and hear the emotion

• “This must be very hard for you on so many levels”

. . . To begin depriving death of its greatest

advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness, let us frequent it, let us get used to it. . .We do not know where death awaits us: so let us wait for it everywhere.

Michel de Montaigne

Thank you

• oliverdr@missouri.edu
• http://Legaciesfromthelivingroom.com
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