Palliative Care Overview And Concepts Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Palliative Care Medical Director, Pediatric Symptom Management Service

What Is Palliative Care? Surprisingly difficult to define Not defined by: Body system (compare with dermatology, cardiology) What is done (compare with anesthesiology, surgery) Age (compare with pediatrics, geriatrics) Location of Care (compare with ER, critical care) Any illness, any age, any location…

What Is Palliative Care? (a personal definition) Palliative Care is an approach to care which focuses on comfort and quality of life for those affected by life-limiting/life-threatening illness. Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status. The spectrum of investigations and interventions consistent with a palliative approach is guided by the goals of patient and family, and by accepted standards of health care.

“Thank you for giving me aliveness” Jonathan – 6 yr old boy terminally ill boy Ref: “Armfuls of Time”; Barbara Sourkes

Palliative Care… The “What If…?” Tour Guides Can Help Inform The Choice Of Not Intervening What would things look like? Time frame? Where care might take place What should the patient/family expect (perhaps demand?) regarding care? How might the palliative care team help patient, family, health care team? “What if…? Disease-focused Care (“Aggressive Care”)

Lifetime Risk of Dying (%) A SOBERING TRENDLINE 100 50 Lifetime Risk of Dying (%) Dawn of Time Timeline Today

Palliative Care – Relevance In Context Lifetime Risk of: Heart disease: 1:2 men; 1:3 women (age 40+) Cancer: > 1:3 Alzheimer's: 1:2.5 – 1:5 by age 85 Diabetes: 1:5 Parkinson’s 1:40 1:1 Death:

Don’t confuse “Palliative Care” – the philosophy of approach to care in the context of life-limiting illness with “Palliative Care service delivery”…. the latter is the application of the broad philosophy within the constraints of existing (limited) resources Services are focused on the most needy, which tends to be in the final months of life

Palliative Care As A Philosophy Of Care Program Available Services Criteria

“Active Treatment” Palliative Care Palliative/ Comfort Intent EVOLVING MODEL OF PALLIATIVE CARE D E A T H “Active Treatment” Palliative Care Cure/Life-prolonging Intent D E A T H Palliative/ Comfort Intent Bereavement

Over-representation of cancer diagnosis, due to: Societal acknowledgement of CA as a terminal illness More definable palliative phase in CA than non-malignant illness Maximizing quality of life in non-cancer illnesses often requires expertise in that specific disease, with aggressive disease-focused interventions (CHF, COPD) Budget constraints on may preclude aggressive disease-focused management of illness.

Palliative Care services should be challenged to broaden their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances: Withdrawal of life-sustaining therapy Inoperable surgical conditions Ischemic gut Gangrenous limbs Dissecting aortic aneurysm Massive stroke Trauma

How To “Raise The Bar” Of Expectations On Such a Fundamentally Sad Issue?

Expect – if not demand… High level of skill and knowledge in pain and symptom control Consultations if necessary Communication with patient and/or family Clear, honest, respectful Proactive/preemptive when issues predictable Availability and Accessibility Dignity – connection to the “who” involved; the person Low Expectations… how can you have high expectations for death?

Compare With Other Interfaces With Health Care Surgery Informed consent Teaching videos Booklets Obstetrics Prenatal classes Birth Plan What About A “Death Plan”… with broader expectations than the usual clinical issues in a Health Care Directive?

SYMPTOMS IN ADVANCED CANCER Ref: Bruera 1992 “Why Do We Care?” Conference; Memorial Sloan-Kettering

Symptoms At The End of Life in Children With Cancer Wolfe J. et al, NEJM 2000; 342(5) p 326-333 80 70 % 60 50 40 30 20 Successfully Treated (% Of Affected Children) 10 27 % 16 % 10 % Pain Dyspnea Nausea And Vomiting

PHYSICAL PSYCHOSOCIAL SUFFERING EMOTIONAL SPIRITUAL

Alleviate Suffering for a Condition Which: CHALLENGE- Alleviate Suffering for a Condition Which: Ultimately will affect every one of us: - Large numbers - We have our own “death issues” as care providers Only approximately 10% of Canadians have access to specialty care Few physicians or nurses have even basic training Clinicians don’t intuitively know when they need advice… They don’t know what they don’t know The process & outcome are expected to be terrible… after all, it is death How can you tell when something inherently horrible goes badly? Has a tremendous impact on those close to the individual… “collateral suffering” No chance of feedback from patient “after the fact”

Effective care of the dying involves: Adequate knowledge base Attitude / Behaviour / Philosophy Active, aggressive management of suffering Team approach Recognizing death as a natural closure of life Broadening your concept of “successful” care

Potential Palliative Conditions “The Usual Suspects” – progressive life-limiting illness Incurable cancer Progressive, advanced organ failure (heart, lung, kidney, liver) Advanced neurodegenerative illness (ALS, Alzheimer’s Disease) Sudden fatal medical condition Acute stroke Withholding or withdrawing life-sustaining interventions (ventilation, dialysis, pressors, food/fluids…) Trauma – eg. head injury Ischemic limbs, gut Post-cardiac arrest ischemic encephalopathy etc…

Potential Palliative Care Interventions Generally Not Palliative Palliative Variable Support CPR Emotional Spiritual Psychosocial Ventilation Transfusions Infections Highly burdensome Interventions Control of Hypercalcemia Pain Dyspnea Nausea Vomiting Tube Feeding Dialysis

Potential Palliative Care Settings Anywhere

Improving Palliative Care Professional Practice Stds of practice for symptom management, availability, responsiveness, communication Certain palliative interventions held to higher scrutiny and rigour – eg. palliative sedation Specialty area for nursing Core competencies Curriculum in undergrad and post-grad in all involved disciplines Continuing education Education Improving Palliative Care Public Awareness Raise awareness and expectations Improve “death culture” Empower in decision-making Service Availability Core requirements for facility and program accreditation (CCHSA) Risk management people need to see poor palliative care as a risk Re-frame good palliative care as prevention/promotion