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Unit 11: Palliative Care Part 2: Psychosocial Issues in HIV and AIDS Helping Patients to Have a Good Death Training on Clinical Care of HIV, AIDS and Opportunistic Infections Good Death? Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 2 Learning objectives • Define palliative care and describe how our view of it has changed in the past decade. • Describe the elements of a good death from the perspectives of patients, loved ones, and health care clinicians. • Give examples of how health care clinicians can help to facilitate a good death for patients. • Consider how culture can impact patients’ end-of-life experiences. Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 3 WHO Definition of Palliative Care • An approach that improves the quality of life of patients and their families facing the problems associated with lifethreatening illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems—physical, psychological and spiritual (WHO, 2002) Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 4 Traditional View of Palliative Care Therapies to modify disease (curative, restorative intent) Diagnosis Training on Clinical Care of HIV, AIDS and Opportunistic Infections Terminal Care 6m Death Bereavement Care Unit 11 Part 2: Good Death, Slide 5 Health Status Trajectory of Dying: Old model Steady Decline Decline Death Time Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 6 Peter Adams Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 7 Health Status Trajectory of Dying: Periodic Crises Decline Crisis Time Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 8 The Continuum of Palliative Care Therapies to modify disease (curative, restorative intent) Diagnosis Life Closure 6m Therapies to relieve suffering, improve quality of life Training on Clinical Care of HIV, AIDS and Opportunistic Infections Actively Dying Death Bereavement & OVC Care Unit 11 Part 2: Good Death, Slide 9 Elements of a Good Death Pairs or Small Group Exercise: 1. Share briefly with each other examples of both good and not-so-good deaths that you have witnessed. 2. What do you think contributes to a good death? What are elements of a “bad” death? Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 10 Components of a Good Death • • • • • • Pain and symptom management Clear decision making Preparation for death Completion Contributing to others Affirmation of the whole person Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 11 Pain and Symptom Management • Pain adequately controlled • Adequate symptom control, particularly shortness of breath • Intact bodily functions • Being mentally aware • Reassurance from clinicians early in the illness Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 12 Clear Decision-making For the patient and family: • Good communication; clinician comfortable discussing death & dying and emotionally supportive • Patient participation sought & valued For the clinician: • Patient has clear treatment preferences • Decisions are made before medical crisis Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 13 Preparation For Death For patients and family: • Knowing what to expect—physical, emotional, spiritual • Planning for events before, during, and following death-- where to die, who to call, legal issues, memorial plans For the clinician: • Clinician training and exploring own issues • Preparation does not preclude hope; it empowers pts. Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 14 Completion • • • • • • • Life review Resolving conflicts Feeling at peace with self and others Spending time with loved ones Saying goodbye Attention to religious or spiritual beliefs Rituals appropriate to culture Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 15 Contributing To Others • • • • Need to reciprocate with caregivers Sharing time, gifts with loved ones Helping others Imparting knowledge learned or meaning of life to others • Leaving a legacy Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 16 Affirmation of The Whole Person • The patient is not just a “disease” • Empathy and respect • Clinician values patient and family lives, beliefs, preferences • Personal relationship with patient important to clinician Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 17 Other Components From Review of “Quality of Death” Literature Patient: • Not being a burden—financial, physical, emotional • Psychological well-being • Coordination & continuity of care • Personal dignity Family: Emotional support, caregiver education, bereavement support Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 18 Role of Health Care Clinicians In a Good Death 1. Please give an example of an intervention you’ve witnessed or participated in that helped a patient to have a good death. 2. What do you see as your role in helping patients to achieve a good death? Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 19 Role of Health Care Clinicians In a Good Death (2) • Exploration & support of patient decisionmaking • Pain management • Advocacy for patient’s wishes • Family education & support • Spiritual support and exploration • Sorting out grief from depression and treating depression • Referral to Legal Assistance Centre Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 20 How HIV Impacts A Good Death • • • • • • • • Discrimination Fear of contagion Isolation/Lack of support Estrangement from family Multiple losses Unpredictable course Financial issues Substance use Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 21 Cultural Issues That Shape Our Thinking About A Good Death • Family has obligation to shoulder the burden • The physician is the expert and should decide • Truth of diagnosis is harmful or burdensome to patient • Indirect communication • Emphasis on present orientation • We can’t control our fate; it’s God’s will • All life involves suffering Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 22 Exploring Decision-making Preferences • When decisions need to be made about your care, who should be involved? • If we needed to discuss a serious medical issue, how would you and your family want to handle it? How much would you want to know? • How do you want me to care for you during your illness and at the end of life? Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 23 Preparation for Death: Culture and Death Rituals • • • • Chanting or wailing Family washes & prepares body Opposite sex may not touch body Body must stay in room for proscribed length of time • Body must be taken home before burial • Timing of burial Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 24 Cultural Competence In End-of-life Care • Evaluate your own cultural beliefs and practices • Learn about the specific cultures in your region • Inquire about patient’s cultural practices and beliefs in advance • Focus on building trust • Address communication barriers • Involve the family Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 25 Conclusions • No single formula for a good death • Develop a protocol for discussing endof-life care with patients and families • Patients and loved ones need assurance that all issues will be addressed: Physical, psychological, spiritual, legal, psychosocial • YOU can have a huge impact on the patient’s quality of life and quality of death Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 26 Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 27 Some Case Examples • Patient with high CD4 (450) and community acquired pneumonia. Family says this is it, don’t treat. What do you do? • Patient with CD4=40, 100,000 VL, wasting, gray skin, but still walking. Has been on multiple ARV regimens, no options left. She has been planning her marriage to another HIV+ man. How do you counsel her? Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 28 Contributors Anthony Back, MD J. Randall Curtis, MD, MPH Frances Petracca, PhD Liz Stevens, MSW Manager Director Co-Director Evaluator Project Visit our Website at uwpallcare.org Copyright 2003, Center for Palliative Care Education, University of Washington This project is funded by the Health Resources and Services Administration (HRSA) and the Robert Wood Johnson Foundation (RWJF). Training on Clinical Care of HIV, AIDS and Opportunistic Infections Unit 11 Part 2: Good Death, Slide 29