Transcript Palliative Care for HIV/AIDS

Integrating Palliative
Care into TB Care
Kathleen M. Foley
November 18 ,2010
2002 WHO Definition of
Palliative Care
"Palliative care is an approach which
improves quality of life of patients and their
families facing 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"
Important Aspects of Palliative Care
Palliative Care
 Affirms life and regards dying as a normal process.
 Neither hastens nor postpones death.
 Provides relief from pain and other distressing symptoms.
 Integrates the psychological and spiritual aspects of patient care.
 Offers a support system to help patients live as actively as
possible until their death.
 Offers a support system to help the family cope with the patient’s
illness and in their own bereavement.
Palliative Care as a Public Health
Issue
affects all people
 need for better information on end-of-life
care
 potential to prevent suffering
 potential to prevent disease
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Palliative Care as a Prevention
Model
 prevents
needless suffering
 provides peer education
 provides patient centered care
 incorporates self-management
programs
WHO Public Health Model
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Policy
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Implementation
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Palliative Care for HIV/AIDS
Important for AIDS/TB care with or without
disease-specific therapy.
 Balance of disease-specific and palliative
interventions throughout the continuum of HIV
disease, always ‘both…and’ rather than ‘either…or’
Common palliative care problems in AIDS/TB Care
-Pain and symptom management.
-Emotional and psychosocial support for
patients and families.
-End-of-life issues.
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Prevalence of Current Symptoms in
Patients with AIDS*
Fatigue
Weight loss/anorexia
Pain
Anxiety
Insomnia
Cough
Nausea/ vomiting
Depression/ sadness
Dyspnea/ respiratory symptoms
Diarrhea
Constipation
48-77%
31-91%
29-76%
25-40%
21-50%
19-36%
17-43%
15-40%
15-48%
11-32%
10-29%
*Aggregate data from existing published descriptive studies of patients with AIDS,
predominantly in patients with late-stage disease, Europe and North America, 1990-2002.
Complex care needs in HIV
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Symptom burden patients attending outpatient HIV
clinics in London
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63% tiredness
55% worry
51% diarhoea
50% pain
47% skin problems
46% numbness/tingling in hands/feet
32% suicidal ideation
ref:
Traditional Dichotomy of Curative and
Palliative Care for Chronic Progressive Illness
Curative
Care
(=disease-specific
restorative)
Diagnosis
Palliative
Care
(=supportive,
symptom-oriented)
Dying
Person with illness
DISEASE PROGRESSION
Death
Models of Curative and Palliative Care for
HIV/AIDS in Developed and Developing Countries
Developed Country Model
Curative Treatment
specific therapy)
(DiseasePalliative and supportive care
(Pain and symptom management)
Developing Country Model
Curative Treatment
(Disease-specific therapy)
Palliative and supportive care
(Pain and symptom management)
(Foley, 2003)
Integrated Model Including both Curative and
Palliative Care for Chronic Progressive Illness
Curative Care
(=disease-specific, restorative)
Palliative Care
(=supportive, symptom oriented)
Diagnosis
Dying
Person with Illness
Family
Caregivers
DISEASE PROGRESSION
Death
Support services for
families and caregivers
The continuum of palliative care
Life
Closure
Therapies to modify disease
(curative, restorative intent)
Diagnosis
6m
Therapies to relieve suffering,
improve quality of life
Actively
Dying
Death
Bereavement
Care
Model Initiatives in Palliative Care in
South Africa
HPCA-SA developed integrated community based
home care models (ICBHBC)
Home-based palliative care
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All HBC organizations should
be trained in palliative care
Community caregivers trained to
screen for clinical problems and
to refer to professional nurse
Trained in treatment support –
ARVs, TB, analgesic medication
Trained in basic nursing skills,
nutritional advice
Basic counselling skills including
bereavement counselling
Supervision and support
provided by professional nurse
Diagram showing continuum of care in resource-constrained setting
Admit
Interdisciplinary
team at the
clinic or
hospice
Supervision
Professional nurse
Home
care
Home-based carer
PATIENT AND FAMILY
Training and Education
Continuum of care
Patient care
Referral
centre
Approaching integration (n=4)
Localised provision (n=11)
Capacity building activity underway (n=11)
No hospice-palliative care activity yet identified (n=21)
Palliative Care and HIV/AIDS
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Decreased HIV mortality rates = increased prevalence of
HIV/AIDS
Prolonged survival = growing need for ongoing care
Prolonged survival in symptomatic patients = greater
need for symptom management
Cumulative disease burden, co-morbidities-TB and
iatrogenic toxicity = increasing challenges of chronic
disease care
‘Conversion of death to disability’
Need for palliative care: comprehensive care for patients
and families, including pain and symptom management,
advance care planning, and supportive services for
progressive, incurable illness
Use of Palliative Care Medications in
HIV/AIDS
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Growing science of palliative medicine, with evidence-based
practices in treating specific symptoms associated with
chronic, incurable illness.
Best palliative intervention is sometimes disease-specific
(anti-fungal therapy, anti-mycobacterial therapy), sometimes
symptom-specific (anti-emetics, steroids, opioids).
Palliative treatment can be very effective for wide range of
symptoms, including nausea/vomiting, fatigue, anorexia/weight
loss, fever, diarrhea,dyspnea. Aggressive and effective
symptom management can improve quality of life and HIV
treatment outcomes.
Palliative and disease-specific therapy should co-exist as
appropriate, based on available options.
Special Challenges for Palliative Care
for HIV/AIDS and TB
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Changing prognostic indicators
Uncertain role of antiretrovirals in end-stage
disease
Pain management in drug users
Co-morbidities such as TB
Changing therapeutic paradigms
Differential impact of HIV-related mortality
Social context and stigma of HIV/AIDS
Misconceptions regarding palliative
care
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For some people, palliative care is seen as care of
the dying
Palliative care is applicable early in the course of the
illness in conjunction with treatment intended to
prolong life
Palliative care affirms life and focuses on quality of
life
Palliative care addresses each person’s individual
needs - physical, psychosocial and spiritual issues
Pain Management in AIDS
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High prevalence of pain in AIDS:
29-76% of patients, higher with advanced disease.
Pain due to effects of specific opportunistic infections
(headache/cryptococcal meningitis,
odynophagia/esophageal candidiasis),
HIV itself (distal symmetric polyneuropathy), or
medications for HIV and TB
Pain due to infection with TB
Important to treat pain in order to improve quality of life,
relieve suffering, and improve HIV treatment adherence
and outcomes.
Psychosocial Issues in HIV Palliative Care
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HIV disease affects young families, often including multiple
family members. Needs of ‘AIDS orphaned’ children may be
particularly important.
Fear, anxiety, sadness, depression are common symptoms in
patients with AIDS. Grief and bereavement need to be routinely
addressed in families and caregivers.
Social isolation, stigma, and shame can affect both patients and
families.
Psychosocial context has key impact on goals of care, advance
care planning, and decisions about end-of-life care and treatment
‘withdrawal.’ These issues are best addressed by multidisciplinary team (medicine, nursing, social work, mental health,
pastoral care), and must include community outreach and home
care services.
Care & Support groups have
suggested a Framework for Action
A comprehensive, sustainable response must include:
 good standards of care for patients;
 recognition of the role of community caregivers;
 appropriate standards of support for caregivers;
 providing the necessary equipment including .g.
home based care kits and medicines;
 fair financial support;
 on-going training, support and supervision.
Challenges for Palliative Care for
AIDS in Resource-Rich Settings
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Attending to palliative care needs within ‘curative’ paradigm
of HAART in which patients are not ‘supposed’ to die
Maintaining focus on psychosocial needs to patients/families
with progressive, incurable illness
Addressing complicated pain and symptom management
issues in chronically ill patients over extended period of time
Managing iatrogenic complications, co-morbidities, drug
interactions
Overcoming the false dichotomy of HIV-specific and
palliative care paradigms: beyond ‘either…or’ to ‘both…and’
Goal: Providing integrated care across the continuum of
HIV/AIDS, improving quality of life, treatment outcomes,
and end-of-life care for patients/families, within the context
of available resources
Challenges for Palliative Care for
AIDS in Resource-Poor Settings
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Obtaining access to HIV specific therapies (e.g., HAART)
Obtaining access to palliative care therapies (e.g., opioids)
Prioritizing HIV services in context of limited resources
(e.g., primary prevention, perinatal transmission, targeted
population-based HAART, care for the dying)
Providing effective palliative care services that do not
‘normalize’ a two-tiered system of care (i.e., ‘HAART for the
rich and opioids for the poor’)
Linkage of palliative care services to existing and traditional care
systems
Goal: Providing integrated care across the continuum of
HIV/AIDS, improving quality of life, treatment outcomes,
and end-of-life care for patients/families, within the context of
available resources
Summary and Conclusions
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Palliative care is an important element in HIV/AIDS care,
in both resource-rich and resource-poor settings.
Patients with HIV/AIDS have a high prevalence of pain
and other symptoms, as well as psychological and social
problems of life-threatening illness and its effects on
young families.
Palliative medicine offers many interventions to help
relieve pain and other symptoms, reduce suffering,
improve quality of life, and improve adherence with other
medical therapy.
Global health policy and planning should address the
importance of integrating palliative care into HIV/AIDS
service planning and delivery, including ensuring
adequate access to palliative care and HIV-specific
therapies in all settings where HIV care is provided.