John Cagle, PhD, MSW Institute of Medicine, Washington DC July, 2015
Palliative care Patient/family-centered Interdisciplinary Quality of life Hospice/non-hospice
A Better Match We need to integrate social care with medical care Institute for Clinical Systems Health Care Blog, 2013
The Role of Social Work Attending to the non-medical e.g., social, emotional, behavioral and environmental aspects of care: Assess psychosocial needs Help navigate care systems and transitions Foster coping/provide emotional support Facilitate decision-making Improve access/adherence to treatment Connect families to needed resources
Social Work in Context The intersection of health literacy, palliative care and social work includes: 1. Careful attention to language 2. Addressing myths and misperceptions 3. Advocacy for social justice/vulnerable populations 4. Facilitating coping and minimizing distress 5. Acknowledging uncertainty and change
What is Health Literacy? The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Healthy People 2010
Baseline Adult Literacy 21-23% of adults are functionally illiterate e.g., unable to correctly: Complete a deposit slip Determine date/time of a meeting on a form Identify specific information in a brief article National Center for Education Statistics, 2002
1. Careful Attention to Language
Language is that which can be understood. Hans Georg Gadamer, Philosopher
Potential Pitfalls Medical jargon Volume of information Lack of time Metaphors: fight or battle against illness Absolute terms, e.g., all, nothing, always, never Culturally specific terms
Something not Nothing It may seem like we have few options, but the truth is there is a lot we can do: Expert pain and symptom management Attention to quality of life/dignity Mobilize social/emotional/spiritual supports Strengthen relationships Hospice/palliative care Explore and define the family role: Help with decisions Eyes and ears Hands on care
A Good Death The concept of a good death may not be meaningful across cultures. Hispanic respondents 17 times more likely to describe a death as bad rather than good
Choose Words Carefully Acknowledge biases: How we describe health care options will impact the decisions people make!!!
2. Addressing Myths & Misperceptions
Knowledge of Palliative Care is Poor Only 20-30% have heard of palliative care 80-85% have heard of hospice HOWEVER, among those who have heard of hospice: Score a C+ on a general knowledge test Nearly 2/3 do not know that hospice requires patients to forego curative treatment CAPC, 2011; Cagle et al 2015
Myths about Hospice Common myths about hospice: Hospice is only for cancer patients Hospice is a place Hospice care is only for the patient Hospice is expensive Hospice care stops after 6 months Many more
Address Misperceptions Many people: Overestimate the likelihood of treatment success Underestimate the risks/costs Many of our best interventions have low rates of success and high rates of burden.
3. Advocacy for Social Justice & Vulnerable Populations
High Risk Populations Racial/ethnic minorities Economically disadvantaged Mentally ill Developmentally delayed Women Children The incarcerated
Disparities of Note An estimated 40% of patients who qualify for hospice care never receive it Disproportionately low numbers of minority patients receive hospice care, particularly: African Americans Hispanics Disparities in pain management Harrison, Ford & Wilson, 2005
4. Facilitating Coping & Minimizing Distress
Coping and Distress The ability to process health-related information may be impeded by: Emotional/psychological processes, e.g.: Shock Denial Anger/blame Depression Anxiety
5. Acknowledging Uncertainty & Change
Uncertainty and Change Dealing with uncertainty: Acknowledge unknowns Feel comfortable saying I don t know Discuss what is known ; what is knowable Challenges of prognostication Health literacy and preferences may change due to: Medication side effects Disease progression Emotional capacity (denial/acceptance)
Concluding Thoughts Health illiteracy is invisible Assess - start where the patient and family are Regarding communication: It is impossible not to communicate (non-verbal cues) Empathy and expectations are vital Involve family whenever possible Greater transparency re: health costs needed Individual preferences are paramount
Thank You!