Psychosocial Aspects of Palliative Care:

Communication with Patients and Families

Elizabeth A. Keene, ACC, FTVP, Mission IntegrationSt. Mary’s Health SystemLewiston, MEekeene@stmarysmaine.com

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, 3rd 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 6th 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 InterventionsClinical Communication Collaborative www.clinicalcc.com

• 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 orexpress 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 bewilling 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 www.caringinfo.org

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 www.caringinfo.org

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 (http://www.agingwithdignity.org/five-wishes.php )

• Caring Conversations(http://www.midbio.org/workbook.pdf)

• 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 (http://www.capc.org)

• Caring Connections information sheets(http://www.caringinfo.org)

• Fast Facts and Concepts-End of Life/Palliative Education Resource Center(http://www.eperc.mcw.edu/fastFact/ff_223.htm)

• Interact tools: Advance Care Planning Guide(http://interact2.net/tools)

Words from the heart enter the heart…