Palliative Care in Patients with Brain Tumors: How to maintain hope and quality of life, even when treatments fail

Tobias Walbert MD PhD MPH Assistant Professor Neurology Wayne State University Henry Ford Hospital Detroit twalber1@hfhs.org Palliative Care in Patients with Brain Tumors: How to maintain hope and quality of life, even when treatments fail

Palliative Care in Patients with Brain Tumors: How to maintain hope and quality of life, even when treatments fail Tobias Walbert MD PhD MPH Departments of Neurosurgery and Neurology Assistant Professor Neurology Wayne State University Henry Ford Hospital Detroit twalber1@hfhs.org

What s your quality of life about?

What is Quality of Life? Quality of life is.. a complex, multidimensional concept defining an individual satisfaction with life in domains he/she considers important.

Quality of Life in Brain Tumors A multidimensional construct Physical Function Social Function Health Related Quality of Life Quality of Life Symptom Severity Emotional Function Spiritual Well- Being Cognitive Function

Outcomes: The Clinicians Perspective What clinicians are concerned about: Physical manifestation of the disease measured by: Tumor response Overall survival Progression free survival Rothwell PM, BMJ 1997 Armstrong TS, Curr Oncol Rep 2012

Outcomes: The Patients Perspective What patients are concerned about: Vitality, role limitations, emotional problems Mental health Quality of Life Maintaining hope Overall Survival or Progression Free Survival do not always reflect clinical benefit Rothwell PM, BMJ 1997 Armstrong TS, Curr Oncol Rep 2012

Quality of life - A multidisciplinary Approach Radiation Oncology Neurosurgery Neuro- Oncology Medical Oncology Health Related Quality of Life Quality of Life Symptom Severity Behavioral Health Nursing Care Palliative Care Social Work Physical Therapy/ Rehab

Bruera E, and Hui D JCO 2010;28:4013-4017 The Road Trip Analogy

Bruera E, and Hui D JCO 2010;28:4013-4017 The Road Trip Being Prepared

What is Palliative Care? an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.. http://www.who.int/cancer/palliative/definition/en/

Palliative Care is not hospice Hospice is palliative care at the end of life Hospice is for patients with a life expectancy of <6months (Medicare requirement) Hospice does not shorten life Hospice places of care: Home Nursing home or long-term care facility Hospice inpatient unit Hospital

Early Hospice First hospices originated in the 11th century AD as a place of shelter and rest for weary or ill travelers on a long journey Palliative Care evolved from the hospice movement "hospice" comes from the Latin word hospes: host / a guest Crusader hospice in Old Jerusalem (1099 1291 AD)

Modern Hospice 1967: Dame Cicely Saunders started St Christopher s Hospice in London First inpatient modern hospice 1974: First outpatient hospice organization in the USA Only the US strictly differentiates between hospice care (life expectancy < 6 months) and palliative care

Hospice Services include. Intermittent nursing care (1-3x/ week) 24-hour availability for assessment/ management of changes, crises Social work, counseling Physical therapy, occupational therapy, nutrition, speech therapy Respite to permit family caregiver to take a break Help with advanced care planning Bereavement support to family after death

Palliative Care Provides relief in the setting of: Pain Shortness of breath Fatigue Nausea Other distressing symptoms Psychological suffering Discussion of goals of care Inpatient as well as outpatient setting

Palliative Care and Quality of Life Palliative Care Quality of Life Symptom Severity Health related QoL Hope

Traditional Palliative Care Model Disadvantages: Referrals too late to make a difference Patients referred too late for meaningful decision making Kamal AH et al., J Oncol Pract. 2011 Nov;7(6):382-8

Early integration of palliative care Advantages: Enhanced symptom management to increase quality of life Patients have cognitive ability to engage in meaningful decision making Development of a trusting relationship with palliative care provider Kamal AH et al., J Oncol Pract. 2011 Nov;7(6):382-8

Palliative Care.a team approach Integrates the psychological and spiritual aspects of patient care Offers a support system to help the family cope Uses an interdisciplinary team to address the needs of patients and families Physicians and midlevel providers Social work Volunteers Spiritual counseling Intends neither to hasten nor to postpone death Palliative care can be applied early in the course of the disease & in conjunction with other therapies

Does Integrated Palliative Care in Oncology work? Early palliative care in metastatic lung cancer (Temel et al., NEJM 2010) 151 patients with metastatic lung cancer received early palliative care versus standard care: Better quality of life Lower rates of depression & anxiety Better symptom control Longer median survival

Integrated Palliative Care in Oncology Hospital Anxiety and Depression Scale: HADS-D: Depression HADS-A: Anxiety Patient Health Questionnaire 9: PHQ-9: Depression Depression Anxiety Depression

Integrated Palliative Care in Oncology Functional Assessment of Lung Cancer (FACT-L): Symptom and Quality of Life Assessment

Are symptoms in neuro-oncology different? Symptoms High Grade Glioma¹ General Cancer last 2 weeks of life² Fatigue NR 88% Weight loss NR 86% Appetite loss NR 56% Neurological symptoms 32% Drowsiness 44 90% 38% Poor Communication 64 90% NR Speech Difficulties 29 64% NR Focal Deficits 51 62% NR Poor Mobility 77% NR Weakness 17 25% 74% Seizures 10 56% NR ¹Walbert T. and Khan M., End of life symptoms in high grade glioma. ²Teunissen S. et al., J Pain Symptom Manage 2007

What are the symptoms of brain tumor patients? Prospective study of patients and caregivers Goal: What are the symptoms of brain tumor patients at the end of life? How can we help patients and their families? A total of 28 patients plus caregivers participated in this study Patients and caregiver were called every 2 weeks to find out about the patient and their symptoms Phillips and Walbert, AAN 2015

Mean Response What are the symptoms of brain tumor patients? 10 8 6 4 2 0 12-14 10-11 8-9 6-7 4-5 2-3 1 Weeks before death Fatigue Appetite Drowsy Concentrating Seizures Appearance Bowel Pattern

Challenges at the end-of-life Seizures Communication Sudden neurological decline Patients are unable to participate in end of life decision making When is the right time to address these issues?

Quality of life is about..

Advanced Care Planning Patients with brain tumors can loose their ability to make plans and decisions early on Unable to make decisions closer to end-of-life Problems: No assigned medical power of attorney Families and caregiver are not sure about the patient s wishes Patient s wishes are not followed Best approach is unknown

Advanced Care Planning: http://theconversationproject.org/

Advanced Care Planning: http://theconversationproject.org/

Advanced Care Planning: The conversation project http://theconversationproject.org/

Thank you! Questions: twalber1@hfhs.org