Enhancing End-of-Life Care: Compassionate Dialogue and Informed Decision-Making

1. Palliative Care:- Promoting Patient-Centeredness, Compassion and Transparency with Patients and their Care-givers at the end of life Setorme Tsikata, MBChB, MSc., CCFP. Assistant Clinical Professor Dept. of Family Medicine University of Alberta, Canada Medical Knowledge Fiesta, 13 Sept. 2016

2. Conflict of Interest • None to declare

3. Learning Objectives • Discuss the importance of promoting dialogue between patients, physicians & family at the end of life – wishes/goals of care (GoC) • To promote informed decision-making through transparency in the diagnosis, prognosis, available management options (in the context of limited resources – eg. Ghana), and their potential complications with patients and their family/care-givers. • To promote reducing unnecessary suffering through compassionate and comfort care based on available resources at the end of life.

4. Case 1 • 72y/o male, GT, admitted to the acute care unit due to increasing pain, confusion and behavioral changes. Diagnosed with advanced lung CA 2 years ago with recent brain mets via CT (last CT results unknown to family). Had chemo-radiation therapy which was unsuccessful, leading to progression of cancer. • PMHx is significant for COPD, on home oxygen and long-acting inhaled corticosteroids and short-acting bronchodilators, HTN, NIDDM, Depression • Family brought him in because they felt he may have a UTI which could present as worsening confusion & mimic some of his behavioral symptoms. They also want his pain controlled. • His current analgesics include opioids with appropriate bowel regimen.

5. Case 1; Medication list • Altace 5mg po daily (Ramipril) • Metoprolol 25mg po daily • Metformin 500mg potid • Aspirin 81 mg po daily • Advair 250mcg 2 puffs bid (Fluticasone/Salmeterol) • Spiriva 18mcg 1 capsule daily (Tiotropium Bromide) • Citalopram 20mg po daily • Home Oxygen at 5L/min • Fentanyl patch 50mcg/hour changed every 72 hours • Dilaudid 2 mg po q 4hrly, prn (Hydromorphone) • Acetaminophen 500mg po 4-6hrly, prn (total not more than 3g per day) • Lax-A-Day 17 g po daily (Polyethylene Glycol) • Senokot 2 tabs poqhs (Senna)

6. Questions 1. What is the appropriate work-up (if any) and management? 2. What other simple measures could be helpful at this juncture? 3. His wife and kids are very worried, anxious and upset that his pain is uncontrolled and behavior seems to be worsening. They are unaware of his latest head CT results - What approach do you use in addressing family concerns and managing patient’s symptoms?

7. Definition of Palliative Care • WHO definition – an approach that improves the quality of life of patients and their families facing the problems 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(1) • Ghana stats – 16000 new cases of cancers per year, 1000 found in children (2)

8. Goals of palliation Palliation is defined by Webster as reducing the violence of a disease; to ease symptoms WITHOUT curing the underlying disease Goals - relieving suffering from pain and other symptoms • improving the quality of life of patients, throughout the illness and bereavement experience ….. • Irrespective of prognosis, patients have a right to being afforded the best care possible as a basic human right (1); this ideally should be upheld.

9. Palliative Care team • This requires a “TEAM” or “INTERDISCIPLINARY” approach • FP/GP, specialist (eg. oncologist) • nursing staff • social worker • Psychologist • Dietitian • PT/OT • Chaplain/Rabbi or other spiritual head, etc. • care-givers/family members involved in the care

10. Disparities in Palliative Care • Despite advances in Palliative Care, inequalities still exist irrespective of setting. • In resource-rich countries, the poor and socially marginalized are less likely to access palliative care, achieve optimum relief of pain and other symptoms or die in their preferred place(3,4). • The implications of poverty in resource-poor settings are greater, where the burden of progressive disease are enormous and public health systems are weaker(3,4). • It is therefore imperative to find patient centered strategies to achieve the best palliation possible, through open discussion with patients and their families.

11. Using a Patient-Centered Approach 1 • Discuss diagnosis & prognosis with patients &/family/care-giver (s) – stage of dz, evidence - Honesty and transparency • Address patients’ priorities (5), fears, ideas, feelings, expectations – allow ample time • eg. expectation of full recovery based on mountain moving faith and case studies • Stages of grief - denial, anger, bargaining, depression and acceptance (6) • Goals at end of life – dependent on culture, values, belief system, FAITH, age, distal and proximal contexts - Address religious, spiritual beliefs in a patient centered fashion. • Discuss “trade offs” – risk of prolonging suffering versus benefits of added time; ie. buying time for the inevitable versus quality of life during that added time.

12. Using a Patient-Centered Approach 2 • Patient’s wishes ultimately over-rides wishes of family/care-givers unless patients are unable to consent to treatment • Advanced directives • Enduring power of attorneys, substitute or alternate decision makers. etc. • Living wills

13. Using a Patient-Centered Approach 3 • Ethical implications when treatment is futile in resource-deficient settings (where healthcare is literally rationed and equity prevails) • Finding Common-Ground when patients’/family wishes are incongruent with standards of care at end of life

14. Compassionate/comfort care to alleviate suffering • Webster defines compassion as a sympathetic consciousness of others’ distress in combination with a desire to alleviate it. • Compassionate/comfort care is therefore synonymous with strategies to relieve suffering or distress in patients. Some of the modalities employed are:- - Symptom control – conservative/medical management - PAIN - most common symptom in palliative care - Liberal but cautious use of opioid analgesics for pain control to avoid untoward side effects when non-opioid analgesics are no longer effective - In the presence of multiple symptoms and multi-organ failure, keeping the patient comfortable should be priority

15. Other common symptoms • Respiratory symptoms – cough, wheezes, dyspnea • Gastrointestinal symptoms – nausea and constipation • Psychological symptoms – depression, anxiety, delirium

16. Kubler Ross Model – Stages of grief • Denial • Anger • Bargaining • Depression • Acceptance

17. Preservation of Dignity • Maintenance of personal hygiene • Regular bath tub or bed baths and grooming • Nail and mouth care • Odor control – eg. change soiled diapers without delay • Frequent turning – prevents decubitus ulcers • Active involvement of family in decisions around care, room décor to simulate “home-like” or familiar surrounding • Palliative care suit/room • Option of dying at home - house

18. Opioid analgesic use 101 • Start low, go slow, don’t wait to initiate • Use oral route and if not effective, use continuous subcutaneous route – easier access to avoid unnecessary pain with im route. • intravenous route my be difficult to obtain in certain circumstances eg. edema • Start with prn doses q4 hrly (morphine sulphate) and calculate how much is required in 24 hours; this allows you to use longer acting options • Immediate Release (IR) Morphine for breakthrough analgesia • Converting from IR morphine – Admin 50% of pt’s 24 hr IR doses as ER or extended release doses q 12 hourly OR one-third of IR dose q 8 hrly • Converting from parenteral to oral ER • 1 mg of parenteral Morphine is equivalent to 2-6mg of oral Morphine • Titrate based on analgesia need • Do not d/c abruptly – tapering doses

19. Opioid Analgesic use 101 • SC/IM:- 5-20mg/70kg q 4hrly • i/v :- 2-10mg/70kg over 3-5 mins • PR:- 10-20 mg q 4hrly, prn • Fentanyl patches:- 25- 100mcg/hr delivery – to be reapply q 72 hrly - Start at 12.5mcg/hr - Reduce dose by half in mild/moderate renal impairment

20. Questions 1. What is the appropriate work-up (if any) and management? 2. What other simple measures could be helpful at this juncture? 3. His wife and kids are very worried, anxious and upset that his pain is uncontrolled and behavior seems to be worsening. They are unaware of his latest head CT results. - What approach do you use in addressing family concerns and managing patient’s symptoms?

21. Conclusion • Dialogue between physicians, patients & family at the end of life is important to help establish goals of care. • Patients and their families have a right to know diagnosis, prognosis, available management options and their potential complications in order to make informed-decisions about their care. • The goal of palliation is to reduce unnecessary suffering through compassionate and comfort care based on available resources at the end of life.

22. THANK YOU

23. References 1. World Health Organization 2. http://www.theafricareport.com/West-Africa/ghana-records-16000-cancer-cases-annually-1000-childhood-cases.html 3. Crawley L, Payne R, Bolden J, et. al., Palliative and end-of-life care in the African American community. JAMA 2000;284 (19):2518 – 2521 4. . Decker SL, Higginson IJ,. A tale of two Cities: factors affecting place of cancer death in London and New York. Eur J Public Health 2007;17(3); 285-290 5. GawandeAtul, Being Mortal; Medicine and what matters in the end, 2014. 6. Kubler-Ross, E. On Death and Dying, 1969