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Principles of Palliative Care in its integration in the management of
HIV/AIDS
Maria Witjaksono
Palliative Care Unit - Dharmais Cancer HospitalJakarta, 12 November 2009
BackgroundDefinitionHistoryPrinciples of Palliative CareIntegration palliative care in HIV/AIDS managementBarriers and challenges in developing PC in AIDS patientsSummary
Who is there in all the world who listens to us? Here I am this is me in my nakedness, with my wounds, my secret grief, my despair, my betrayal, my pain which I can’t express, my terror, my abandonment. Oh listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence. Oh God, is there no one to listen?
Seneca
Background
Most patients with life threatening illness will eventually die from their diseasePatients with a life threatening illness and their families experience multi aspects of sufferingAn interdisciplinary approach is required to relieve multi aspects of sufferingPalliative Care promotes and facilitates continuity of care when cure is absurd to achieve quality of life and to relieve and avoid needless suffering Palliative care is complementary care not alternative care
Complex problemsPhysical symptoms:opportunistic inf, treatment, debilitating, other condition: dementiaPsychological distress:Uncontrolled physical symptomsAnticipated disabilitiesDisfigurementPhysical dependencePhysical exhaustionLoss of control Side effects of therapyProgressive diseaseUncertain life expectancyBureaucracyExpensePoor communicationUnhelpfulDisinterestedLack of information
Social difficulties
Problems with interpersonal relationship due to patient’s or other person’s reaction to the illnessMarital problems, role shifts, financial needsDisclosure, attitude to HIV/AIDS, pain, deathDiscrimination, loss of job, lack of support
Spiritual concerns
Relating to the pastRelating to the presentRelating to the future
concern about deathRelating to religion
disease is punishmentexistence of after-life
Roger Woodruff, Palliative Medicine 3rd ed,1999
suffering
Psychological
Socialcultural
Other physical symptoms
pain
spiritual
Definition
Palliative care is 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 (WHO 2002)
Aim of PC for patients with AIDS
To help individual patients preserve maximal quality, control and dignity in their lives before they die
Paul Glare, 1995
Principle of Palliative CareAffirm life and regards dying as normal processAims to neither hasten nor postpone deathGives the patient a central role in decision makingProvide relief from distressing symptomsIntegrates the psychological, emotional, spiritual and social aspects of care for the patients, the family and carers in a culturally sensitive mannerAvoids futile interventionsOffers a support system to help patients live as actively as possible until deathOffers a support system to help the family and carers coping during the patient’s illness and after the patient’s death.Uses a team approach to address the needs of patients and their care givers
Affirm life and regards dying as normal process
Aims to neither hasten nor postpone death
Gives the patient a central role in decision making
Provide relief from distressing symptoms
Integrates the psychological, emotional, spiritual and social aspects of care for the patients, the family and carers in a culturally
sensitive manner
Avoids futile interventions
Not doing everything doesn’t mean doing nothing.
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family and carers coping during the patient’s illness and after the patient’s death.
Principles of Symptom Control: WHY?
Evaluation: cause, pathological mechanism, previous treatment, impact on the patient’s life, how far has the disease progressExplanation: cause, treatment options Management: correct the correctable, non drug treatment, drug treatment, seek a colleague advice, never say there’s nothing more I can do. Monitoring: review! (modified, ceased)Attention to detail Individualized tr/ (available tr, weighing benefits against burden, the wishes)
Communication:
Complex: culture, cognitive, hope for cure is absurdPrinciples:
respect patient’s right to inform or not to informDiagnostic and therapeutic toolEffective communication...understanding, acceptance, adjusment, decision making, cooperation, spirit to achieve the goal
Listening more than talking
Aspects of communication
Who is informedWhat to informHow much is to informWhen to informWhere to informHow to inform
What if the family express the wish for nondisclosure?
Decision making
Quality of life is decided by the patientPC assissting the patients work out the goals and prioritiesAdvance directives
maintain a sense of controlrelieve the burden of decision making for the famopen communication
incapacity.....proxy decision on behalf
a Team approach to address the needs of patients and their care givers
Eight needs of family members
To be with the patient
To be helpful
To receive assurance of the patient’s comfort
To be inform of the latest condition
To be inform of impending death
To ventilate emotion
To receive comfort and support from relatives
To receive acceptance, comfort and support from the hcp
Management approach:
ActiveHolistic (biopsikososiospiritual)Patient’s centeredInter disciplinary
Quality of lifeQuality of death
Choose not to initiate therapyChoose to cease therapy due to unacceptable adverse effects Find difficult to comply with the complex medication scheduleHave disease progressing despite optimal treatment
The benefit of palliative care to the patient and their family
Increased satisfaction with the care of patients and carersBetter awareness of their diagnosisBetter performance status and quality of lifeImproved survivalImproved burden and emotional stress: depression, anxiety, angerBetter degree of involvement in careMore time spent at homeReduction in hospital daysReduction in costIncreased likelihood of patients dying where they wished
The benefit of palliative care to the hospital
The hospital can stand out as a unique establishment and the forefront of the communityInnovation and new services will result in increase patient activityPC is more cost-effective than other type of careReduction in total hospital daysHospital beds will be focused on patients with cancer treatmentReduced the length of waiting listIncreased hospital income generated from PCImprove community relationsEnsure continuity of care for patients discharged home
Place of care
PolyclinicHospital ward, HCU, ICUPatient’s residence
One day care & Emergency room
Hospital based hospice
Hotline service
Type of services
Pain and other physical symptoms management Psychilogical supportSocial supportSpiritual supportDischarge preparationNursing care Medical equipment supplyCare giver and nurse supplyTerminal Care Bereavement care
Challenges
Patients with AIDS are younger Many patients have experienced multiple losses in their livesThere may be isolation and even rejection from the family and other social supportCarers or partners may also be infected the HIVAdverse effect of medications are often a cause of significant symptomsPain and other symptoms management in current or past users of elicit or recreational drugs may be difficultHigh incidence of dementiaA serious and lifethreatening opportunistic infection may allow patients to return to their previous quality of life
Barriers
SOCIAL & CULTURPublic awareness <Taboo around deat h, Px, DxFamily as opposed to individual decision‐makingFear of morphineDesire for curative treatment at all costsReliance on traditional
medicines
GOVERNMENT POLICY
PC is not seen as priorityUncommitted governmentAbsence of policy/legislationLack of fundingUnavailability of opioidCoverageAbsence of standard & accreditation
HCP
Entrenched attitude within the medical professionPC seen as less prestigious disciplineAbsence of PC module/placement in medical curriculumSmall number of professionals entering the fieldInterdisciplinary team work
“The relief of suffering when cure is impossible should become the heart of all medical services. It is what every patient and family hopes for and has right to expect. Therefore, each healthcare professional has responsibility to provide it.
Derek Doyle, 1999
Challenges
General condition of the countrypolitical, social and economical instability
Social and culturallow public awarenesstaboo around death/disclosure the D/ and Pr/
Government policyPC is not seen as priorityUncommitted governmentAbsence of policy/legislationLack of fundingUnavailability of opioidCoverageAbsence of standard & accreditation
HCPEntrenched attitude within the medical professionPC seen as less prestigious disciplineAbsence of PC module/placement in medical curriculumSmall number of professionals entering the fieldInterdisciplinary team work
Challenges in ASIA
Fear of opioids ‐dates back to the Opium Wars
Fear of addiction –Govts reluctant to facilitatePhysicians reluctant to prescribePatients reluctant to take
Though many countries make their own oral morphine, restrictions prevent this from being available to patients outside major cities
Challenges in AsiaPhysician issues
Reluctance to prescribe morphineNeed for education for clinical decision‐making at the end of life& better communication with patients & familiesNeed for specialist accreditation for palliative medicine
Patient care issuesFear of morphine
Desire for curative treatment at all costsReliance on traditional medicines
Communication issues about disclosure of diagnosis & prognosisFamily as opposed to individual decision‐making
Summary
Suffering related to life threatening illness is enormousIn the absence of hope of curative therapy, palliative therapy is required to relieve sufferingContinuity of care is especially important for patients facing life threatening illness and their family to avoid unnecessary sufferingPalliative Care promotes and facilitates continuity of care to avoid needless suffering, eliminate patients and family’s perception of abandonment and ensure that choices and preferences are respectedEvidence base: PC is an effective approach to reduce suffering in patients with life threatening illnessChallenges in the development of PC need to be faced hand in hand by the HCP, the government and the community
