Psychosocial Aspects of Palliative Care: Communication with Patients and Families Elizabeth A. Keene, ACC, FT VP, Mission Integration St. Mary’s Health System Lewiston, ME

I, Elizabeth A. Keene, do not have any relevant financial interests or other relationship(s) with a commercial entity producing healthcare-related products and/or services.

Objectives Identify three preferred practices related to the domain of psychosocial care. List elements of a goals of care conversation. Identify two interventions to improve psychological and emotional well-being.

Engaging the Public From Death Panels To Death Cafés

Definition of Palliative Care Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. - Center to Advance Palliative Care

From Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba

Psychosocial Domains in Palliative Care: Psychological and Psychiatric (#3) Social (#4) Spiritual, Religious and Existential (#5) Cultural (#6) Ethical and Legal (#8) National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (2013, 3 rd ed.)

Preferred Practices related to Psychosocial Domains: Psychological Assessment and Management (#14, 15) Reaction to Serious Illness (#16) Care Conferences (#18) Social Care Plan (#19) Spiritual Assessment, services (# 20-22) Cultural Assessment (#24) Advance Care Planning (#35-37) National Quality Forum Preferred Practices for Palliative and Hospice Care Quality (2006)

Emotional Distress: the 6 th Vital Sign Temperature, respiration, heart rate, blood pressure, pain, distress Screening for distress can predict negative outcomes Psychosocial interventions can lead to reduced billing IOM affirmation of importance of psychosocial care (2008)

Preferred Practice #19: Creating a Social Care Plan Plan reflects patient and family’s culture, values, strengths, goals and preferences Purpose: –Maixmize social well-being –Maximize coping skills –Maximize use of patient/family strengths –Refer to appropriate services

Creating a Social Care Plan (cont’d) Psychosocial assessment including social, legal and practical needs –Access to transportation –Level of income –Insurance coverage –Ability to care for dependents –Impact on work, school or relationships Decisions at family conferences may generate a care plan Adapt and adjust plan over time

Preferred Practices #35-37: Advance Care Planning Voluntary process of discussion about future care between individual (and family) and care providers Elements of goals of care discussion might include: –Patient’s values and goals of care –Patient’s concerns and wishes –Patient’s understanding of illness and prognosis –Patient’s preference for types of care or treatment Discussion is documented Plan is regularly reviewed Plan is communicated to key persons involved in care

Preferred Practice #15: Psychosocial Interventions Creation of a safe space Therapeutic approaches Personal growth and self-care Chochinov, HM et al. ( 2013) Health Care Provider Communication. Cancer.

Preferred Practice #15: Psychosocial Interventions Creation of a safe space

Psychosocial Interventions: Creation of a safe space Establish Trust –Encourage conversation –“Manage up” –Acknowledge mistakes –Demonstrate respect –Do not force decisions Attend to Emotions –Legitimize feelings –Explore feelings –Offer support Communicate Hope –Hope for the best, prepare for the worst –Reframe hope –Focus on the positive

Psychosocial Interventions Clinical Communication Collaborative Therapeutic approaches

Psychological Interventions How do you feel inside yourself? - Favorite intervention of Diane Meier, MD, Director of Center to Advance Palliative Care

What to Listen for… Themes beneath the facts Feelings –Expressed verbally –Tone of voice –Body language –Excessive protestation –Self-contradiction

What to Listen for… Where they place their energy Use of metaphors Sensory avenue –Visual –Auditory –Kinesthetic

Facilitating Conversations About Goals of Care Attend to affect and provide opportunities for patients to talk. Avoid vague terms — or define them. Ask for questions. Remind patients that they don’t need to make an immediate decision and can always change their mind. Ensure shared understanding of conversation by asking “why” when patients ask for specific treatments or express their goals. Restate your understanding and ask for confirmation that you got it right.

Facilitating Conversations (continued): Remember that you are offering to let people talk about this issue, not forcing them to “give up.” Remember to talk about the positive things that you can do to help the patient accomplish their future goals It might help to conceptualize these conversations like going to AAA for travel-guides (at least it helps us). You want to find out where they want to go and what they want to avoid. Also find out what they might be willing to go through to get to these destinations and how to handle probabilities. Knowing this, you can then make recommendations about the best treatments to help them accomplish this plan. Medical Oncology Communication Skills Module 4

Commonly Articulated Goals Be cured Live longer Improve or maintain function/quality of life/independence Be comfortable Achieve life goals Provide support for family Kaldjian, et al. (2008) Goals of care toward end-of-life. Am J Hosp Palliat Care

Early Conversations How much do you want to know about your disease and the various treatment options available? What past experiences influence your feelings about your care? What frightens you most? Under what circumstances would you want the goal of care to switch from attempting to prolong life to focusing on comfort? What will help you to live with joy and meaning? – Talking About Treatment Options for Palliative Care: A Guide for Clinicians

Transitional Conversations How comfortable are you? You told me XXX was important to you-is that still the case? Are there any other things that have come into play now? What questions do you have at this point? – Talking About Treatment Options for Palliative Care: A Guide for Clinicians

The Best Care Possible Emotional support –Forgiveness –Gratitude –Expressions of love –Saying goodbye Byock, I. (2004) The Four Things that Matter Most.

Psychosocial Interventions Personal Growth and Self-Care

Personal and Professional Development Support and encourage self-care and stress management Professional development should address spiritual development (sense of calling, relationship-centered care) Develop and sustain healthy teams Provide opportunities to discuss ethical issues

Advance Directives Communication tool Advocacy tool Counseling tool “It’s always too soon until it’s too late”

Advance Directives Respecting Choices Program: –First Steps (advance directives for anyone over the age of 55 years) –Next Steps (patients with chronic, progressive illness) –Last Steps (Physician Orders) Five Wishes ( ) Caring Conversations ( Everplans.com

Talking with Children Let the child’s questions guide the conversation. Tell the truth. Use precise, concrete terms. Be brief. Invite the child to express thoughts/feelings.

Resources: Policies and Tools for Hospital Palliative Care Programs-Crosswalk of NQF Preferred Practices ( Caring Connections information sheets ( Fast Facts and Concepts-End of Life/Palliative Education Resource Center ( Interact tools: Advance Care Planning Guide (

Words from the heart enter the heart…