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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
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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
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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
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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
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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
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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