PALLIATIVE CARE FOR PEOPLE WITH HIV AND AIDS
"HIV & AIDS Treatment in Practice #16, 23 October
2003"
Posted: Friday, November 14, 2003
SUMMARY
This article is planned as the first of two, exploring aspects
of palliative care for people with HIV and AIDS. It has been
written by Julian Meldrum with thanks to advisory panel members
Chris W Green (Indonesia), Paul Roux, Francois Venter (South
Africa), and Brian Gazzard (UK) for their comments.
Some countries, notably Uganda, have made great efforts to
promote palliative care as part of the response to HIV and
AIDS, and have well-defined national strategies. The Southern
African HIV Clinicians' Society has commissioned and published
guidelines for palliative care. Further professional initiatives
are under way in South Africa. However, many other countries
may have further to go before there is even a clear sense
of what should be done.
'Palliative care' is often equated with the idea of hospice
and care at the end of life, and many palliative care specialists
do work in that area. However, current definitions of palliative
care tend to be much broader. The implication is that virtually
all health care providers working with people with HIV and
AIDS need to practice palliative care to some extent.
Pain relief, similarly, is just one aspect of palliative
care. However, it is an important aspect and in many settings
is not adequately addressed for reasons which can include
patients' expectations as much as lack of training and resources
for service providers or fears about the use of opiates.
Addressing issues that come under the banner of 'palliative
care' is not a distraction from providing treatment, because
the prime duty of a physician in the face of illness is to
deal with people's suffering and treatment that does not alleviate
people's suffering won't be acceptable or sustainable.
WHAT IS PALLIATIVE CARE?
Palliative care is an approach to treatment that is centred
on the experience of the individual and family suffering directly
and indirectly from an illness, which addresses their symptoms
and concerns directly, and which is complementary to and does
not exclude continuing efforts to treat the causes of that
illness.
A definition put forwards by the US Health Resources and
Services Administration (HRSA), in a manual on palliative
and supportive care for people with AIDS and HIV (see resources,
at the end of this article), is as follows:
“Palliative care is patient- and family-centered care.
It optimizes quality of life by active anticipation, prevention,
and treatment of suffering. It emphasizes use of an interdisciplinary
team approach throughout the continuum of illness, placing
critical importance on the building of respectful and trusting
relationships. Palliative care addresses physical, intellectual,
emotional, social, and spiritual needs. It facilitates patient
autonomy, access to information, and choice.”
This is different to the way palliative care is sometimes
understood, much more narrowly, as being limited to pain relief
and making people comfortable at the end of their lives. However,
it clearly includes pain relief and recognises that when someone
dies, how they die has a deep and lasting effect on the people
around them - for example, in shaping their ability to deal
with their own illnesses and other problems.
Palliative care has developed and is still growing as a medical
specialty, with a longer tradition in some countries than
in others. However, it should be obvious from the definition
given here that every clinician, nurse or other carer working
in HIV and AIDS care - especially where resources are limited
- has to provide palliative care to a greater or lesser extent.
How well this is done will impact on the ability of a health
care team to deliver other services, as treatment that does
not deal with the problems that are seen by the patient as
being their most serious will not inspire confidence in the
expertise of that team.
OBSERVATIONS
ROUX: I agree with this definition of palliative care. It
implies that every HIV/AIDS health care worker must be aware
of the palliative content of whatever care he/she is delivering.
The difficulty is that where resources are constrained, the
human resource is also limited. Palliative care must address
all the needs listed in the definition. This takes time, not
least because the delivery of proper care depends on building
a strong relationship. Consequently, the difficulty of delivering
good palliative care in resource-poor regions may be as great
as that of providing life-saving interventions.
In my view, a constraint on resources should be seen as a
challenge to patient advocacy and a spur to individual effort
to find the means to improve access to care in general. I
see the need for palliative care and access to life-saving
intervention as being a continuum and therefore of equal priority.
To choose one over the other is not realistic - one needs
both modalities, regardless of how well one is resourced.
I would add that when one accepts rationing as an answer to
scarce resources, one has capitulated to the status quo.
Many HIV-positive people living in resource-poor regions
have never encountered the kind of health care (including
palliative care) they need. If continuity of care and comprehensive
care are not explained to prospective patients, they may well
not adhere to care plans or attend appointments. Ultimately,
the allocation of state resources requires political will.
If enough resources are to be secured and sustained, enough
people living with HIV need to discover what their health
care needs are and then to lay political claim to these needs.
GAZZARD: Palliation is central to the management of all ill
patients and HIV is no different and indeed no more important
than any other disease [in this respect] and it is the prime
duty of the physician to relieve suffering.
VENTER: I think this definition is increasingly being accepted
in South Africa. I think doctors are often guilty of paying
way too much time to pointless heroics in terms of prolonging
life (not just AIDS, all things) and way too little time to
symptom control.
GREEN: In general I agree. However, I think we do need to
put terminal care, and grief and bereavement into the continuum,
together with palliative care. We also need to identify the
role of hospice. Death of younger people is rarely dignified,
and death from AIDS especially so—there's no quietly
slipping away. But preservation of dignity and understanding
the feelings of loss (e.g. loss of control, loss of independence)
do need special consideration.
There are definitely situations, at least in the developing
world, in which healthcare workers may have to apply triage.
There is a tendency to send dying patients home because 'there
is nothing we can do for them.' But hospice can be based upon
lay caregivers, with limited involvement by doctors.
There is a tendency to focus on other issues such as treatment
of OIs, and now antiretroviral therapy (ART). We do need to
recognise that ART can be 'Lazarus therapy.' But there is
a risk that it will divert attention from palliative care,
as this becomes less frequently required. Modern doctors often
feel unempowered if they are unable to prevent death, especially
in younger people, and thus avoid this issue - at least this
is the impression I have in Indonesia. This is compounded
by the difficulties in accessing effective pain relief, and
(I suspect) lack of training in end-of-life issues.
How do we diagnose 'dying'? How do we communicate that diagnosis
to the patient and the family? Terminal AIDS is vry frequently
a 'roller-coaster', with family anticipating death during
the night, only to find the patient demanding a large breakfast
next morning. Conversely, such 'recoveries' are often followed
by relapse and death. This is extremely stressful for carers.
PAIN CONTROL AND PAIN RELIEF
Effective pain control has been championed by the hospice
movement and is an advocacy priority, for example, for the
international palliative care initiative of the Diana, Princess
of Wales Memorial Fund based in the UK (see resources, below).
The basic principle, endorsed by the WHO, is the use of an
'analgesic ladder' in which the strength of painkilling drugs
is matched to the nature, intensity and persistence of the
pain reported. (This is very well described in the US manual
already mentioned, in which the WHO chart and lists of relevant
drugs and their starting doses are provided online as PDF
files.)
In many countries, there are legal issues which may limit
access to effective pain relief, especially when this requires
the use of the more powerful opiates. However, even when these
are resolved there are often practical and cultural barriers
to be overcome to ensure effective access to treatment.
OBSERVATIONS
ROUX: Access to proper pain relief in South Africa is limited
more by a lack of training in palliative care than by legislation.
In particular, there is a lack of knowledge and skill regarding
the assessment and management of pain in children. Nurse practitioners
would, as things stand, have limited access to the analgesic
ladder. There are lingering and inappropriate inhibitions
to the use of morphine for pain control. There are a number
of programmes offering training in palliative care in South
Africa.
VENTER: There remains a strong belief that opiates lead to
addiction, and that we may be facilitating this. This is particularly
common amongst nurses. The other commonly exaggerated side
effect of the opiates is respiratory depression. I am very
aggressive with opiates, and have never seen a case of addiction.
I have also never seen respiratory depression in a patient
where the side effect was explained to the patient and care
giver, where the dose is rapidly titrated up while watching
for signs. I have, however, seen countless patients undertreated
while clinicians wring their hands over these perceived dangers.
I sort of understand – killing someone with your drugs
is a very basic fear for medical staff, but it remains hopelessly
exaggerated.
GREEN: In Indonesia (which stretches over more than three
time zones), there are only four hospitals allowed to prescribe
morphine, and in those the number of doctors allowed to prescribe
is limited. Even then, stocks may not be available. There
seems to be very little pressure among the medical profession
to get this changed.
That said, even in those places, doctors may be unwilling
to prescribe because of fear of dependency, especially to
those with a drug-using background. There is fear that patients
are faking it to get narcotics, lack of understanding that
doses need to be higher due to tolerance. Also drug users
in recovery may be unwilling to take narcotics for fear of
relapse.
Most patients and lay carers (and also some nurses) seem
to accept that pain is an inevitable - even appropriate -
side effect of sickness and death, especially from AIDS, and
that little can be done about it. Thus they do not demand
relief.
THE WIDER PICTURE OF PALLIATIVE CARE
As a starting point for a wider discussion of palliative
care and the implications of the definition set out earlier
in this article, members of the advisory panel were invited
to highlight a few of the most pressing concerns.
The first point to emerge is the need to keep an open mind
and listen to patients and caregivers to identify what is
really most important and distressing to them at a given time.
This leads, for example, to the observation that thrush is
particularly painful and needs active treatment, regardless
of the stage of a person's illness, and to the need to take
skin conditions seriously.
The mental health dimension of caring for people with HIV
– and looking after their carers too – is integral
to palliative care, which recognises that it needs to be addressed,
as that definition emphasised, in terms of 'intellectual,
emotional, social, and spiritual needs' which inevitably require
more than medication. However, medical treatment for depression
may be appropriate and further comments on strategies to manage
this would be welcome.
Care for the care-giver is clearly essential, and two members
of the panel set this out as a major challenge. A discussion
to be continued in the next issue, on which further contributions
from readers are encouraged.
OBSERVATIONS
GAZZARD: My personal feeling is that there is sometimes too
much emphasis on pain relief and too little emphasis on symptomatic
remedies that can improve the patient's quality of life. Thus
an obvious example is oral/oesophageal thrush which is a very
painful and unpleasant way to die. Provision of effective
remedies against this seems to me to be a priority in palliative
care. Similarly diarrhoea is a very distressing symptom which
can often be alleviated by opiates which need to be used freely
in this situation.
VENTER: Dermatologic problems are often dismissed, but can
cause significant psychological stresses and negatively affect
self-image. It is rare for a patient with more advanced disease
not to have symptoms, but medical staff often dismiss or under-treat
common skin and scalp conditions.
In South Africa, a recent audit showed that HIV-positive
status was one of the strongest risk factors for suicide.
Anecdotal evidence from psychiatrist friends of mine is that
they have seen a steady increase in depression and psychosis,
with a disproportionate number of these being positive. The
psychological stress of the condition should not be underestimated.
Medical staff sometimes do not appreciate the public perception
that this is a sexually transmitted disease (we see it presented
as pneumonia, TB, meningitis, etc – hardly ever as a
conventional STD) with significant stigma and shame attached.
Substance use problems are less common than one would think
– alcohol is a problem, as disinhibition leads to risk
taking behaviour. The number of injecting drug users is still
relatively small as a proportion of patients with HIV in South
Africa.
Among children and adolescents, precious little research
has been done on how to tell children that they or their parent
is HIV positive. We've had several cases of a mother dying
and a bewildered dad or grandparent pitching up wanting to
know what is wrong with the child!
Care for the caregiver is all lip-service and no action.
The burn-out rate amongst the nurses working with HIV positive
patients is high in the public service. Everyone says we need
burnout prevention, no-one does it. I think compulsory debriefing
sessions should be held weekly in work hours – institutionalise
it as part of the working week.
GREEN: Conditions such as nausea are often not viewed as
'pain'. Especially for this, we need to press for access to
marijuana (even if this is going to be a long battle!) Other
issues include: feeding (nutrition, requests for unusual foods);
dementia; palliative care of children; patients without families
(or money); suicidal intentions.
Don't let's forget that grief and bereavement can affect
the patient as much as the family or other caregivers. Loss
of independence, of mobility, of opportunity to bring up the
children, and many other losses can be very unempowering for
those dying young. We should note that there have been few
if any other epidemics which have killed people so early in
their lives, just when hopes are beginning to be achieved.
Often forgotten are legal issues, such as making wills (unusual
for young people), powers of attorney, directions for bringing
up children, living wills. Also non-biologic family (often
significant others) may be excluded from grieving processes,
and even from access to the partner during the last days.
Again, because of youth, many caregivers have little experience
or knowledge of their role. Parents tend to treat the patient
as when he or she was still a child, e.g. attempting to force
them to eat, while the patient finds it difficult to refuse
parents wishes. Patient-clinician communication is terrible
in this country (Indonesia); which is in many ways still feudal,
and in which doctors are not seen as someone to communicate
with, rather to accept often impossible and ill-understood
instructions from. End of life issues are rarely raised; living
wills are most unusual; discussions around 'heroic' interventions
are not held.
Although the theory is that healthcare workers should not
become emotionally involved, this is often not realistic.
Yet few if any are provided with adequate bereavement counselling.
As Thomas Eversole puts it, “new for many therapists
is the role of accompanying their clients to the ends of their
lives, being one of few if any significant friends at the
clients deathbed.” (in Mark G Winiarski, ed, HIV Mental
Health for the 21st Century. New York University Press, 1997
- reviewed at http://www.aegis.com/pubs/books/1998/BK980813.html)
FOUR KEY RESOURCES
UNAIDS
Technical Update: AIDS Palliative Care Oct 2000
A
Clinical Guide to Supportive and Palliative Care for HIV/AIDS,
2003 edition
** Edited by Joseph O'Neill, Peter A Selwyn and Helen Schietinger,
and available online, in print and CD-ROM formats from the
US Department of Health and Human Services. This is a well-written
and thorough manual although the section on 'Palliative care
in limited-resource settings' is mainly about national policies,
so practitioners will want to use other parts of the resources
given here. Many sections discuss the use of drugs which are
available in the USA but may be less available in other countries.
Readers are sometimes referred to publications which are distributed
free of charge to US practitioners but may not be available
internationally (not least, because the free-phone numbers
given cannot be called from overseas). The resource list at
the end is very useful, but mainly US-based, even where international
resources are concerned. The following contacts are in addition
to those listed here.
UK
Forum for Hospice and Palliative Care Worldwide
www.hospiceinformation.info
** Membership of the UK Forum is open to people involved in
palliative care worldwide. It offers "up to date information
on hospice and palliative care, first access to our training
and education grants scheme, advocacy opportunities and access
to policy papers on key issues .. and it's free!" Associate
membership is in fact open to individuals as well as organisations,
anywhere outside the UK. A two-monthly email newsletter, Worldwide
Hospice and Palliative Care Online, is available free of charge
on request to: anne@hospiceinformation.info
Diana,
Princess of Wales, Memorial Fund – Palliative Care Initiative
Where countries are still failing to address basic palliative
care needs, such as provision of painkilling drugs, the Diana
Memorial Fund is ready and willing to assist in advocating
for change. Their grant-making capacity is currently very
restricted and in any case their policy in respect of palliative
care is to choose their own partners to work with. The initiative
is not limited by disease, but has given absolute priority
to countries in Southern and Eastern Africa, all of which
are heavily affected by HIV and AIDS. The Diana Memorial Fund
is also a founding sponsor of the UK's “Stop AIDS Campaign”
which is pressing for increased international assistance to
countries where HIV and AIDS are most severe and is an active
supporter of the South African Treatment Action Campaign.
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Source:
'HIV & AIDS Treatment in Practice' is an email
newsletter for doctors, nurses, health care workers and community
treatment advocates working in limited-resource settings.
The newsletter is published twice every month by NAM, the
UK-based HIV information charity behind www.aidsmap.com.
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