CARE OF THE TERMINALLY ILL

AIDS PATIENT

Maria A. Witjaksono

Unit of Palliative Care Dharmais Cancer Hospital

FACTS

Most AIDS patients will eventually die from the disease

Death and dying is difficult and uncomfortable topic to discuss

: an enemy to be fought and abhored at all cost

Difficult to recognize that patient is actually dying (barriers)

Who are eventually die from AIDS

Do not initiate therapy

Cease therapy:
unacceptable side effects
difficult to comply with complex med.schecdule
Have disease which progressing despite optimal tx
Lymphoma of the CNS
Kaposis sarcoma
Uncontrolled infection
Have uncountered co-morbidities
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 a right to expect. Therefore, each health care
professional has responsibility to provide it when it is indicated.

Derek Doyle, 1999

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 cant 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
Palliative Care 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)

PC is an integrated system of care that improves QoL by

providing pain & symptoms relief, spiritual and
psychosocial support from diagnosis to the end of life and
bereavement (WHO 2005)
Principle of Palliative Care
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
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 patients illness and after the patients death.
Uses a team approach to address the needs of patients and their
care givers
Challenges

Patients with AIDS are younger

Many patients have experienced multiple losses in their lives
There may be isolation and even rejection from the family and
other social support
Carers or partners may also be infected the HIV
Adverse effect of medications are often a cause of significant
symptoms
Pain and other symptoms management in current or past users
of elicit or recreational drugs may be difficult
High incidence of dementia
A serious and lifethreatening opportunistic infection may allow
patients to return to their previous quality of life
Death may be expected. GOOD DEATH?
Consequences

Majority of patients die in hospital, the place that might not be as

they wish, and may be given unneeded or unwanted treatment
(CPR inappropriately innitiated).
Unnecessary suffering, undignified died and familly distressing
Patient and family are unaware that death is imminent
Patient and family get conflicting message
Troublesome symptoms
Cultural and spiritual need unmet
Complex bereavement problems
Losses trust in doctor, unsatisfied and complaints about the care
Disadvantages for hospital
DEATH IS NOT SOMETHING TO BE
FEARED. IT IS SOMETHING TO BE
ACKNOWLEDGED AND ACCEPTED

AND

PREPARED
Preparing patients for the new life
Various attitude toward dying and death
Death is still viewed as an enemy to be fought and
abhorred at all cost
Die at home in missery
 Not doing everything
doesnt mean doing nothing.
Terminal stage and dying

Terminal stage may not be heralded by a gradual decline

No definitive diagnosis of dying, the patient is expected to die

relatively soon (in a matter of days)

Body begins the final process of shutting down

The spirit begins the final process of release from the body,
its immediate environment and all attachment to the next
dimension of life

Clinical pathway: The team must agree that the patient is in

dying phase

Important decision: change the management

Factors ass with shortened life expectancy

CD 4 persistently low < 50cells/mm2

Viral burden remains>100.000copies/ml despite
combination therapy
KPS <50
Failure of optimized therapy: Multi drugs resistance
Significant wasting: loss >30%
Progressive hepatitis C despite therapy
Progressive multifocal leucoenchephalopathy:
dependency, dementia
Unresponsive Kaposis sarcoma, lymphoma
Endstage organ failure
Desire of patient for death
Goal of Care: Comfort, Peace, Dignity

Comfort: Pain and other symptoms control

Peace: Good relationship, no unfinised busines, forgiven, life is

a continum, being prayed, sense of a Supreme being,

Dignity: At place at one wishes, surrounding by family, cultural

respected, express final will, opportunity for closure or sense of
completion of life: say good bye, support for the loved ones
CARE OF THE DYING:

LET HIM/HER GO

Needs of loved ones

What to do & what to say ?
What to do

1. Regularly update assessment of change and

deterioration
2. CPR & mechanical ventilation

Where possible and appropriate: discuss that CPR is universally

futile in advanced stage(advance directives)
appropriate for patient with initial dx and PCP
In palliative care discuss earlier if patient is reffered at late stage
The absence of order relating to CPR is a source of anxiety
3. Medication, monitoring, blood test

Medication is for the patients comfort

Treatment of infection:
Proceed with treatment
Patients wishes, their tolerance to s.e, general condition
Profilactic continued: candidiasis,
Toxo and pneumocytis with co trimoxasole
CMV retinitis: gancyclovir to preserve sight

Current medication assessed and non-essentials

discontinued :antihypertensive, diuretics, insulin, prophylaxis for
PCP, cryptococcal, TBC, NSAID and corticosteroid
Why should I continue this medication not why I should
cease this medication

Convert essential medications to PR or SC route

Discontinue inappropriate intervention (blood and

other test, VS, strict turning regiments)
4. Problems to look out for

Death rattle
Pain including hedache
Breathlessness
Agitation/confussion
Nausea/vomiting
Twitching/myoclonus

Reaction of the family

Other symptoms:
fatigue, loss weight, neuropathy, diarrhea, fever, loss of memory
5. Nutrition and fluid

Patients or familys Problem?

Decreased food and fluid intake are a natural part of dying
process (not in vice versa)
Not starving to death
Artificial nutrition and hydration do not significantly improve
outcome and QoL
May cause distress for patient, fam or HCP
Patient is not suffering because he/she is not eating
Drinking and eating are given to satisfy patients thirst and
hunger
REHYDRATION OR NOT REHYDRATION?

1. SYMPTOM?
2. Respect patient wish and lack of interest in food

Artificial hydration can cause or exacerbate problems:

a. Fluid retention:
b. Secretions: respiratory and gastrointestinal secretion, urine

Correlation with thirst and dry mouth?

6. General care

Do not force food,

Keep the patient clean and dry: mouth, eye and skin care
Urine retention: catheterisation
Bowel care: non invasive
Repositioning, massage
Communication with the patient

It is easier conducted when the patient is still in a good condition

(ADVANCED DIRECTIVES/LIVING WILL)

Do not force the patient to talk about death

Elicit what the patients want to discuss
Do not run from discussion about death and dying when the
patient start it
Ensure the patient that assisstence is available
Place of death, funeral, etc

WHAT IF THE PATIENT ASK FOR INJECTION?

ACTIVE LISTENING
Konseling
Penilaian Pertanyaan
Arti hidup Menurut anda mengapa hal ini terjadi
Apa yang ada lihat ke depan?

Coping mechanism Bagaimana anda mengatasinya selama ini

Kesulitan yang anda hadapai dalam mengatasinya?

Dukungan Siapa orang yang paling berarti saat ini

Siapa yang paling bisa diandalkan
Bagaimana mereka menghadapi kondisi anda?

Stressor Apa yang paling menjadi masalah?

Gejala fisik? Masalah psikologis anda atau
keluarga?
Apakah anda merasa tertekan?

APA YANG DAPAT SAYA BANTU UNTUK

MENGATASI HAL2 TSB?
Communication with patient

Challanges:

Cognitive impairment
Who is the surrogate?
Expected? What if family x patient
Communication

Listen with empaty

Tell the patient that thye are loved and remembered
Understand reactions to the losses
Be prepaired to absorb some reaction: anger

Religious and cultural consideration

Connect with spiritual consellor

Do not impose your view
Praying may be appropriate
Talk about meaning of life
Patient with terminall illness experience
spiritual distress

Painful past
Insecure present
Uncertain future
 Spiritual and existential concerns

Relating to the past

value and meaning of persons life
worth of relationship
value of previous achievement
painful memories or shame
guilt about failures, unfulfilled aspirations
Relating to the present

Disruption of personal integrity:

physical, psychological and social changes
increased dependency
Meaning of personal life
Meaning of suffering

Relating to the future

impending separation
hopelessness
meaninglessness
concern about death
Issue relating to the past

Help patient to reestablish a sense of personal meaning and

worth

Cognitive technique: modify appraisal of things in the past

with emphasis on those things positive and meaningful
Life review: attention to issues causing distress and which
they need to talk

Non jugdmental, supporting and helping to explore

their own issue
Future:

Hopelessness and futility: Setting ahievable short

term goals
Meaningless: restoration of feeling of purpose
Address fears about death
Address religious issue.......REFERRAL
Present

Treatment of reversible physical, social and

psychological problems
Maintain appearance, dignity, self esteem,
independence
Modify their appraisal of the current situation
Establish sense of purpose: acknowledge meaningful
and fulfilling task to be done
How to start?
What has your HCP told you about your condition?
What does this information mean to you?
What do you think might be going on?
Tell me about your good days? What are you able to do? When was your last
good day?
Have you had any bad days lately? What makes them bad?
What do you thing has caused the problem?
What do you think will happen with the illness?
What do you fear most with the illness?
If your condition worsen do you want to go back to hospital?
What are your most meaningful goals at this time? Is there anything wec can do
to achieve them?
If something happend to you, is there anything that you are worried about?
Do you have a living will?
Are you having distressing symptoms?
What can we do to make your life more comfortable?
Konseling
Ones self Apa yang membuat hidupmu berarti saat ini
Relationship Apakah sudah mengatakan betapa pentingnya
keluarga bagi anda?
Apakah sudah memaafkan/minta maaf
Trimakasih
Goodbye

Kematian Apakah anda pernah berpikir tentang kematian?

Apa yang ada dalam pikiran anda tentang
kematian

DO NOT RUN WHEN THE PATIENT TALK

ABOUT DEATH AND DYING
Relaxation.......

Religious ........strenght and comfort

Art, music, family, play, worship,

Suffering is not a problem that demands solution, it is not
a question that demands an answer, it is a mystery that
demands a presence
pain
spiritual Other physical
symptoms

suffering

Psychological
cultural

Social
When verbal communication become more
difficult

Assessment of comfort:
Relay on changes expression
Vocalisation
Respiratory rate
Communication with the family

Kept informed of what is happening and explain that it is part of

the dying process,
Get them involve
Reassure the caregiver despite unable to speak may have quite
acute hearing, to understand and appreciate familiar voices,
loving massages and touch
Given adequate instruction: simple task, touch
AVOID BURNOUT
Be honest about the uncertainty when the time is coming
What to do when the person die
DO I NEED CALL AMBULANCE? Rush? Funeral?
Support the family

Assisstance and instruction on giving medications

Nursing aids

Calling distance relatives

Signs of death
Place of care of the dying: HOSPICE:
Home, hospital, free standing hospice
Depend on: resources, patients wish
Carer exhaustion
Home Care v.s Hospital Care
Roger Woodruff,1999

Advantage of home Disadvantage of hospital

Comfort Rigid timetable

Privacy Impersonal care
Familiarity Loss of control
Security Investigation of questioned
Autonomy value
Reduced focus on illness Financial cost

Close to family and friends Traveling distance for family

Family involvement of care and friends

Advantage of hospital Disadvantage of home

Quality of symptom Physical and mental

management exhaustion

Private life disruption

Social life disruption

Going home for last days/hours

Prepare the family for the changes that occur close to and at the
time of death

Give instruction whom to call

Supply of medication and medical equipment

End-of-life care programmes

Aim for

greater choice for patients

effective care planning
fewer emergency admissions
fewer transfers to hospital
improved skills among generalists
Promoting best practice

identify
people in terminal phase
assess patient care needs and preferences
develop a proactive care plan:
Good communication between professionals
effective co-ordination
Thank you