The Continuum of Pulmonary Rehab and Palliative Care in Advanced Lung Disease: An Interprofessional Approach DorAnne Donesky, PhD, ANP-BC, ACHPN Chaplain Judy Long, MS, MA Pulmonary Quality of Life Clinic

Goals for today’s session Explore the overlap between palliative care and pulmonary rehabilitation Discuss the unique roles of the expanded interprofessional team Review resources appropriate for palliative care in pulmonary patients

QUESTION: Do you know your closest pulmonary rehabilitation staff members? OR Do you have experience in collaborating with pulmonary rehabilitation in the care of your palliative care patients?

Why Pulmonary Rehab? Reverse the cycle of deconditioning Weak, out of shape muscles require more oxygen Toned and strong muscles use less oxygen Exercise helps decrease the demand on the lung by toning muscles

Aspects of Care Pulm Rehab PC Holistic approach ++ +++ Interdisciplinary approach Patient centered Based on patient preferences + Family Support Focus on Disease modification Principles applicable throughout disease Focuses on Symptom Mgt and QOL Focuses on Maximizing Functional Status Promotes Self Management Strategies Psychological support Bereavement counseling Formal exercise training Promotes advance directives Spiritual Dimension Retiker, CRD 2012

Question: When caring for patients with pulmonary disease, what interprofessional team members could be helpful in addition to the 4 core disciplines of PC?

Interprofessional Team RN MD Pharmacist Respiratory Therapist Physical Therapist Occupational Therapist Speech Therapist Interpreter Administrator Chaplain Social Service Nutrition Psychologist Patient Caregiver Dental Hygienist CNA/MA/HHA

Question: What self-care strategies do you see patients using to manage their shortness of breath?

Symptom Management: Dyspnea Oxygen Opioids Benzodiazepines (not 1st line) Nebulizer Fan Pulmonary Rehabilitation Breathlessness Intervention Acupuncture/acupressure Exercise/Yoga/Tai Chi Education Posture Pursed lip breathing Spinal movement Abdominal breathing Pacing Relaxation/MBSR Biofeedback Cognitive Behavior Therapy Music Chest wall vibration Non-invasive ventilation Cochrane, 2008, Chest 2010, Marciniuk 2011

Additional Symptom Mgmt Strategies Somatic Grounding Focus attention on present moment Name Emotions Distance and choice to regulate the emotion Resourcing Engage parasympathetic nervous system Clinician’s Touch Many people are hungry for touch Be sensitive to asking permission Advanced breathing strategies Counteract “freeze” response

Somatic Grounding A. Shift attention to sensation of the support of the chair beneath your body B. Gently shift your attention to the soles of your feet Press the toes toward the floor; Notice the support of the floor beneath the toes; Shift the attention to the outsides of the feet and press them harder into the floor Notice the support of the floor beneath the outsides of the feet Repeat with the insides, the heels, and the soles of the feet Sustain attention for a few seconds C. Shift attention back to the sensation of the support of the chair Adapted from “Somatic Experiencing” (Peter Levine)

Name Emotions Notice when you are starting to feel strong emotion Silently name the emotion in a kind or neutral voice For example, “Oh, this is anger” Scan your body to notice if there is a place where you hold the feeling Direct your attention to that part of the body or around it Silently repeat the word “soften” while directing your attention to that area Allow the feeling to be there until it dissolves Adapted from “Mindful Self-Compassion” (Kristin Neff & Christopher Germer)

Resourcing Recall an experience that you enjoyed Intensify the memory in each sense Use that memory when beginning to notice stress Allow this memory to become a felt experience, not just a thought Adapted from “Somatic Experiencing” (Peter Levine)

Clinician’s Touch Ask for permission to hug Take your time during physical assessment Be aware that it matters John Cacioppo, Loneliness: Human Nature and the Need for Social Connection

Advanced Breathing Strategies Variations on pursed lip breathing Pressure Position of mouth Practice Pace and rhythm Spinal movement up with inhale; bending forward with exhale Notice lower ribcage for expansion on inhalation Allow “whooshing” sound with exhalation Inhale through nose; exhale through pursed lips “Sniff the rose, cool the soup”

Question: What published, online or support resources do you recommend for your patients with lung disease? 1-800-LUNGUSA Submit a Question Live Chat

Resources for pulmonary patients

Take Home Points: 1. Pulmonary rehab is a resource for symptomatic patients with lung disease 2. Use the extended interprofessional team 3. Let patients teach you what works best for them (and then reflect it back to them) 4. Many resources available to support patients with chronic lung disease

Thank you doranne.donesky@ucsf.edu judith.long@ucsf.edu