The Pain Imperative in Hospice & Palliative Care: Social Work's Opportunity to Impact Access & Outcomes Terry Altilio LCSW John Cagle PhD, MSW

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1 The Pain Imperative in Hospice & Palliative Care: Social Work's Opportunity to Impact Access & Outcomes Terry Altilio LCSW John Cagle PhD, MSW Shirley Otis Green MSW, ACSW, LCSW, OSW-C Karla T. Washington PhD, LCSW

2 The Pain Imperative - An Overview Terry Altilio LCSW Division of Palliative Care Mt Sinai Beth Israel New York

3 Social Work- An Honorable Profession Rooted in service to the vulnerable, oppressed & underserved Unique commitment to social justice Advocates, educators, clinicians, mediators Practice principles of person in environment & starting where the person is

4 Definitions to Begin Pain IASP An unpleasant sensory & emotional experience associated with actual or potential tissue damage or described in terms of such damage; always subjective; sensation in part or parts of the body; always unpleasant & therefore an emotional experience. Pain Rey a bio-psycho-social phenomenon nociception reflects anatomy & physiology, but cultural & social factors are the foundation for the expression & treatment of pain.

5 Definitions Suffering Cassell, 1982 Distress brought about by the actual or perceived impending threat to the integrity or continued existence of the whole person. Suffering can include physical pain but by no means limited to it. Total pain Saunders Pain has physical, social, emotional & spiritual components; each specific to the individual & their situation.

6 Care of Patients Who Suffer Is a Shared Responsibility

7 Person in Environment Converging Contexts Public Policy & Politics Regulation Litigation Pt, Family, Caregivers Clinicians Industry Media Insurers

8 Mandates Ethical principles Justice, beneficence, nonmaleficence Fidelity, competence, non-abandonment Scientific standards & guidelines JC standards Litigation Emphasis on end-of-life care & more

9 Pain: a Multidimensional Experience Integrates Knowledge of symptoms & treatments Individualized illness experience informed by patient, family & HCP interpretation Impacts Mood Function Quality of life Grief & bereavement.

10 Why Is Pain Unique & Why Might It Lead to Delegitimation Universal Subjective Culturally, Spiritually, Emotionally, Socially Infused

11 Arthur Kleinman: Pain as Human Experience Pain & Resistance; the Delegitimation & Relegitimation of Local Worlds 1992 Interviews show that when physicians cannot locate the problem or express doubt about the possibility of a solution, patients feel that their pain is disconfirmed. Faced with the disjunction between the cultural model of the visible body & the private experience of pain, patients are alienated not only from individual physicians but from an important aspect of the symbolic world of medicine.

12 Delegitimation A Narrative Review of the Impact of Disbelief in Chronic Pain B.J. Newton et al, 2013 Explore the social context in which individuals experience disbelief Key results integrate to form three main themes

13 Themes Captured Stigma through actual or perceived encounters Psychological explanation of pain Perceived challenge to integrity & thereby affect identity May be influenced by negative female stereotypes The experience of isolation consequent to loss of relationships & being disbelieved may be self initiated Disbelief can lead to emotional distress guilt, depression, anger

14 Delegitimation & Language

15 The Power of Language Words not only convey something, but are something; that words have color, depth, texture of their own, & the power to evoke vastly more than they mean; that words can be used not merely to make things clear, make things vivid, make things interesting but to make things happen inside the one...who hears them Frederick Buechner

16 The Power of Language Care imitates language; that is we tend to relate to people the same way we write & talk about them. Monroe, et al 1992

17 What Accusations, Innuendo & Misinformation May Sound Like

18 Listen Likes the Percocet Claims to be in pain Doesn t look like they re in pain They re asking for oxy They re dying anyway, who cares if they are addicted Non compliant / non adherent Borderline Dysfunctional Drug seeking Clock watcher Addict, junkie, clean, dirty Narcotics Diverting

19 Respect for Persons "Human dignity requires & demands that unnecessary, treatable pain be relieved. Severe or chronic pain blocks or seriously impedes the realization of almost all other human values. Relief of unrelenting pain is required to allow the human being to reflect, enjoy human relationships & even to think & function on a most basic level. Johnson, S. JLME 29, p11

20 Respect for Persons Autonomy implies ability to decide for self based on values & beliefs Autonomous people act intentionally, are informed & free from coercion Persons in pain &/or frightened that their prescriber will abandon them have their autonomy compromised Lo, B., Resolving Ethical Dilemmas. 2000

21 Respect for Persons Autonomy is not absolute; may be constrained by needs of others - prescribers Compromised by limited capacity - entitled to protection May not violate autonomy of others, harm others or impose excessive claims on resources Lo, Ibid pp 11-12

22 Justice Fairness in access to care Persons will receive care equal to other Justice is violated when subgroups of patients receive inadequate pain management

23 & Who Are at Special Risk for Undertreatment Elders Young Female English as a second language Low literacy & perhaps innumeracy Persons of color Paice, 2010

24 Complicating Factors that Infuse Diagnosis & Treatment Psychiatric co-morbidities Depression & anxiety PTSD Personality disorders History of sexual or physical abuse Substance abuse, addiction

25 Complicating Factors that Infuse Diagnosis & Treatment Disagreement among experts Interdisciplinary team conflict Non adherence Can be a terminal diagnosis Family distress Lack of financial stability Absence of social support

26 Shared Clinical Task Create an appropriate treatment plan based on assessment, diagnosis & critical thinking

27 Interventions Pharmacologic Psychological Supportive counseling Cognitive behavioral interventions Anticipatory guidance Psychoeducation Life review & others Family meeting Spiritual Counseling Prayer & ritual Integrative Expressive Arts Environmental Advocacy

28 Interventions Data to be explored & understood Redefine, reinforce & reframe Repeat using preferred phrases or words Ask questions - even when you may think you know the answer & when you do not Columbo approach; I am confused I need your help Specialist assessment beyond us Affirm shared mandate to provide best care

29 We forget that the accumulation of knowledge and the holding of convictions must finally result in the application of that knowledge and those convictions to life itself. JANE ADDAMS Democracy and Social Ethics

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