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Palliative care and home-based care for HIV

Published: 24 November 2003

This week, after a brief hiatus, HATIP returns to the subject of palliative care. Two issues ago, HATIP presented the first of a series of articles exploring aspects of palliative care for people with HIV and AIDS. We've decided to dedicate another two issues to the subject, making this the second of three articles.

Theo Smart compiled this article containing the contributions of our advisory panel members Chris W. Green (Indonesia), Dr. Vijay Anthony Prabhu (Chennai, India), Dr. Henry Barigye (Kenya), Pauline Ngunjiri (St. Kitts), Dr. Gerard Van Osch (St. Maarten), Dr. Douglas Wilson (Pietermaritzberg, South Africa), Dr. Harry Hausler (Cape Town, South Africa). A key resource for the piece was A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, 2003 edition. It was edited by Joseph O'Neill, Peter A Selwyn and Helen Schietinger, and is available online, and in print and CD-ROM formats from the US Department of Health and Human Services.

http://hab.hrsa.gov/tools/palliative/

This week our focus is on 1) the co-ordination of care between the clinician, home-based care organisations and other members of the interdisciplinary care team, and 2) listening to the patient: symptom assessment and assessment tools.

We asked our HATIP advisory panel to offer practical advice on providing patient-centred care through the continuum of illness in a setting with limited resources which includes limited access to a clinician.

Putting together a team to deliver palliative care

As noted two issues ago, palliative care is no longer simply equated with pain relief or the idea of hospice and end of life care. Particularly in the developing world, the definition of palliative care has broadened to include the provision of patient- and family-centred care throughout the continuum of illness.

In resource-limited settings, palliative care typically requires an interdisciplinary team approach that includes both formal and informal caregivers. The goal of the collaborative effort is to alleviate suffering and treat the patient holistically addressing their physical, intellectual, emotional, social, and spiritual needs in a way that is appropriate to each persons culture and economic situation. The team could therefore include clinicians, nurses, community and family members, social workers, churches/mosques and non-governmental organisations. Ideally, the integration of palliative care with broad clinical, social, and spiritual support into the care of someone living with HIV/AIDS should promote quality of life and realistic life planning at any time in the course of the illness.

Thats the goal at least. But how do these collaborations work in the real world? Just how easy is it to put together an interdisciplinary team to work together for the patients best interest? The answer is highly dependent upon a settings economic and human resources.

In my experience, said Dr. Vijay Anthony Prabhu, of the C.S.I. Rainy Multispeciality Hospital, in Chennai, India, palliative care is a neglected area with most personnel not knowing what to do. It is extremely difficult to put together a multi-disciplinary team to address the issue of palliative care. The central issue is one of funding and economics. To get multiple personnel to visit a sick AIDS patient/orphan and to perform tasks related to emotional, physical, spiritual and medical care is easier said than done. Who will bear the costs involved - of transportation and of personnel and pay for the skills utilised?

Dr. Henry Barigye, who works at the Mildmay Centre, a site that offers palliative care for people with HIV/AIDS in Uganda, agrees that funding is a key hurdle. One challenge is to ensure that people with HIV disease receive care despite the limited resources. This is not unique to palliative care or HIV/AIDS it is a major limitation for health services in general. It will certainly be difficult to provide interdisciplinary care at the community and household level.

Dr. Gerard Van Osch, described his experience in St. Maarten, Dutch West Indies: On our island an interdisciplinary team would consist of the doctor and the nurses from the home-care system. No other professionals are available, but of course the team would include the family, and loved ones of the patient, and if necessary one or two members from the St. Maarten AIDS Foundation, more as "temporary buddies", and, on the request of the patient persons from the church he/she belongs to. It is relatively easy to get such a team together for most patients however, there is no financial support for this assistance so its existence depends completely on voluntary help that might make it at times fragmented.

In some developing countries, patients with HIV who have accessed primary care services from government-supported hospitals simply dont receive palliative care because linkages between these government institutions, community based organizations and other potential care providers simply do not exist.

According to Dr. Douglas Wilson, of Greys Hospital in Pietermaritzberg, RSA: In South Africa, many patients with advanced HIV infection are too ill to travel, and so drop off their clinics radar screen. Many re-present to the facility at the end of life in a delirious and dehydrated condition, and may be admitted to a medical ward for intravenous fluids, antibiotics and a hurried decision as to whether or not antituberculous therapy would be appropriate. Palliative care is seldom considered and is difficult to implement, as communication between hospital wards and community-based organizations (CBOs) is faulty at best. It is rare for an outpatient clinician, who has been following the course of the patient for months or years, to make an elective decision to initiate palliative care.

The reasons for such poor communication between hospital and community are complex. There is a desperate shortage of skilled healthcare managers who could co-ordinate the efforts of different role-players. In the absence of a unifying national game plan the heads of clinics and CBOs tend to be maverick self-starters who achieve miracles with little funding, but who may not be the best team players around. Nurses and doctors who feel passionately about HIV tend to focus on providing clinical care, and seldom have the time to assume a more hands-off managerial role. Junior clinicians find it difficult to move from the curative fix-it-all role they learn at medical school. It is sometimes helpful to emphasise to them that palliative care work still provides hope; but instead of holding out hope for a cure, the doctor or nurse can offer relief from physical suffering and emotional distress. Finally, most home-based carers in South Africa work on a voluntary basis, and often burn-out after a few months. Adequate remuneration and a policy of caring for the carers is essential if CBOs are to be viable in the long term.

Treatment advocates can sometimes address the problem of resources, facilitate communication between government facilities and community based organisations and persuade local organisations to contribute to the delivery of palliative care. According to Pauline Ngunjiri, who helped organize the Society For Women and AIDS in Kenya (SWAK), the largest grassroots womens organisation fighting AIDS in that country: "Aware of the limited resources in Kenya, we organised women into groups and sensitised them to respond to households affected and infected by HIV/AIDS and trained them to activate hospitals to link with communities. We trained community activists so they could activate and catalyse structures around them to offer palliative care to those affected and infected. Mobilising communities to use their available resources is crucial."

Dr Henry Barigye agrees that local resources are already available within the community, and can be tapped with the right training: "There is a lot that can be done. Health workers of all levels can be trained to understand the importance of palliative care concepts such as pain and symptom control, involvement of the family and other care-givers, such as pastoral care-givers. In fact, pastoral care is one of the services generally available in sub-Saharan Africa. Understanding the philosophy of palliative care will help to find other support resources, including the role of the family, that may have been ignored previously.

Keeping the focus on the patient and the family

It can be extremely difficult to ensure that care is truly patient centred, that the patients worries are heard and addressed in a timely fashion and that that care is continuous. According to Dr. Prabhu: It is not just a single visit but an ongoing process, which threatens to sink like the "Titanic" on her maiden voyage! Patients are scattered in different places with problems of access. The personnel involved visit the sick only when they have finished their own routine works and often end up visiting and offering assistance at their own convenience, rather than that of the patients!

The interdisciplinary team generally includes family members who often bear most of the burden of care. At the same time, the family is usually under extreme stress.

Chris Green in Indonesia notes that we should not forget the needs of the family/carersit can be very difficult for them to see loved ones suffering. Quite often, family members may even grow to resent the loved one they are caring for.

Dr. Prabhu highlights the way in which stigma affects the provision of home care in India: A lot of stigma is also attached to these visits. If word gets out that their neighbour is suffering from terminal AIDS, then very likely the house owner is likely to throw out his sick tenants or the neighbours will socially ostracise the other family members. As a result these visits are usually done in the evenings after dusk, with a lot of secrecy involved. If questioned by neighbours, the team members will often be requested by the family members to not to disclose the identity of the disease and any other ailment is offered as a diagnosis.

The patients are very often economically distraught, because of all the expenses borne during the course of the illness, and at the terminal stage the family care givers are also distraught and would like matters to take their own course. Frustrations, anger and depression are all extremely common. Counselling of family members is extremely important to provide them some kind of respite.

Home-based care

A key component of palliative care is home-based care, which in many resource-limited settings is the only way to deliver care to the patient. It has been estimated that 50% to 60% of people with HIV/AIDS worldwide have no access to professional healthcare workers to address their medical needs. For example, in Uganda, 88% of the population lives more than 10 kilometres from any kind of health facility and the nurse to patient ratio is 1:4,300.

Medical facilities often lack trained personnel and even the most basic medical supplies and medications. In these settings, palliative care programmes that focus attention on integrated community- and home-based care (HBC) are thus the most efficient and cost-effective approach to healthcare delivery.

HBC is the provision of comprehensive services (including health and social sciences) by formal and informal caregivers in the home, in order to promote, restore and maintain a persons maximal level of comfort, function and health. Usually, these are initiatives from non-governmental organisations, community-based organisations or faith-based initiatives but they require sufficient support and funding to be sustainable. In resource-limited settings without adequate health care infrastructure, these services are not just needed for end of life care, but throughout the course of illness. They are often the only way to deal with a patients ongoing and emerging symptoms where diagnostic and treatment resources are limited.

But while HBC can extend the reach of health and social services in many areas, HBC cannot take on the entire burden of care.

It is critical for home based carers to recognize what things they can and can't handle, said Dr. Harry Hausler of the University of Cape Town, and to refer appropriately to ensure that "home based care" does not become "home based neglect". I think that the tool such as the symptom checklist [see below] would be useful to address this.

The range of tasks that HBC teams can help with varies, but some examples include ongoing counselling and support, help with food, cooking, cleaning, wound care, hygiene, symptom assessment, pain and symptom management, identification of specific opportunistic infections, treatment of some of them, supervision of drug taking, in particular, TB treatment using directly-observed therapy, and monitoring for drug side effects.

In our setting, said Dr. van Osch, home based care groups can give medications and assist with washing where it pertains to the nurses from the home care group. Assistance would be available once or twice a day for no more than half an hour at a time. The volunteers from AIDS Foundation can only assist with transport to doctor visits, picking up of medications, and doing small chores, apart from being a social partner to talk with, or just to be there. The family members/loved-ones can assist with washing and/or blood sugar checks.

It is helpful to identify the fact that not everything can be done by one person in the team. One will help with the food, another with the meds, another with the spiritual nurturing. Some people are great in one part of helping, others are better in the other parts. Defining those tasks, and discussing that it's okay to let certain things be done by others is good, to prevent burn-out, and also make sure to discuss that despite the fact that help is given, the patient might die, but that no one failed.

Even after the patient has passed on it is good to sit with the team and discuss this. Often, some members of the team might feel they have failed the patient. It is good to bring this into the open, and identify those feelings, and where possible show that nobody failed. No-one. Everyone did what they could. Death is inevitable for all of us, but a humane death is what we're aiming at.

Administering drugs safely

Relying on non-professional caregivers to administer drug treatment is unavoidable in many settings but requires access to those medications, adequate training and supervision.

"Medicines for the treatment of pain and other symptoms must be included among the essential medications available at the lower health units," said Dr. Barigye. Activists can help facilitate this as well by making sure the drugs are available. Pauline Ngunjiri also helped to organize the Kenya Coalition on Access to Essential Drugs where we educated our policy makers to legislate a patient-friendly IPPB Bill which was passed allowing Kenya to take advantage of options now offered by WTO. Through the coalition we continue to monitor access, distribution and affordability.

Palliative treatments and co-trimoxazole prophylaxis have been successfully administered by HBC teams, and some believe that such responsibilities might one day lead to the administration and monitoring of antiretroviral therapy as well which, as Lazarus therapy, might dramatically reduce the burden many of the more palliative tasks. However, there have been examples of HBC teams in developing countries mis-prescribing medicines entrusted to them.

For example, a very successful HBC program in Cambodia nonetheless reported that some of their teams would run out of medicines because they gave them to other non-HIV infected community members who were ill, or because they would often hand out the medicine to their patients without adequate diagnosis.

More training, and more frequent and more supportive supervision by qualified doctors or nurses could correct these mistakes, but it is the short supply of clinical professionals that makes it necessary to use informal caregivers to deliver health care in this setting in the first place.

Within our legal framework, said Dr. van Osch officially only oral treatments may be administered by nurses/family members. Any form of injection legally should be done by the doctor. In practice, usually the nurses would give SubQ and IM injections, but all intravenous treatment would be done by the doctors. The family members/loved-ones can assist with giving oral medications and giving of subcutaneous insulin injection (after training in needle safety). Naso-gastric tubes are usually handled by the nurses, but I think the family members could easily learn this after some simple training. However, IV drips are almost impossible to administer at home in our setting.

Dr. Prabhu points out that safety is not only a concern for the patient but for caregivers, particularly if they are also people living with HIV. "Another disturbing trend," he said, is to use people living with HIV/AIDS (PLWHA's) to perform house visits, with little or no barrier precautions to prevent nosocomial transmission of aerosols like TB undertaken. These PLWHA's are paid by non-governmental organisations a pittance to perform these visits with no idea or training of what is expected of them. Very often the "volunteers" after a few months break down with TB and other opportunistic infections. Who is then expected to bear the responsibility of these avoidable calamities? We encourage PLWHA's not to visit extremely sick and terminally ill AIDS patients or at the very least, to wear masks to curtail aerosol transmission.

Symptom relief and measurement

But symptoms cannot be palliated if the caregiver is unaware that the patient is suffering them. Symptom assessment is thus essential to palliative patient care. The U.S. Department of Health and Human Services Clinical Guide to Supportive and Palliative Care for HIV/AIDS states symptoms are experienced by the patient as opposed to signs that are observed by the clinician. This is a key concept; symptoms cannot be seen, although sometimes the physical manifestations of a symptom can be detected.

Dr. Prabhu said "a real problem is to be able to reach out to those in&need. Large numbers of patients suffer in silence afraid, of the stigma and discrimination. The patients are often demoralised by the continuing and relentless progress of infections in spite of all the prophylaxis and are sometimes just totally fed up with all the drugs."

Good communication is crucial to provide patient-centred care, at any stage of disease. First, it is necessary to be able to convey to the patient information about his or her health, and it is also necessary to discover what is the patients understanding of his or her current disease status. The caregiver has to learn from the patient what he or she expects or wants from care. While one common answer could be to live longer, their highest priority may be something immediately pressing, such as the ability to continue working or resolution of a symptom that may appear cosmetic to the clinician but highly stigmatising to the patient. The caregiver must have an up to date knowledge of the patients current goals of care in order to define appropriate treatment strategies for any newly defined problems.

Home-based care teams and family members can be trained to take on some, but not all of the burden of management and symptom assessment.

Chris Green believes some of the most important functions for home based care providers and family members include record taking and monitoring the patients as the doctor simply can't be there at all times: "Although basic medical skills are important, we should not forget the crucial importance of managing the patient, particularly where ad-hoc care teams are working shifts: maintaining notes of all occurrences (food and fluid intake, medicines taken, symptoms, toilet use, etc.). The AIDS Care Team Resource Manual: Living with Dying. Dying at Home, published by AIDS Committee of Toronto, 1994 covers this excellently in chapters on Setting Up a Care Team, and Care Team Records."

Perhaps most importantly, informal caregivers should be trained to recognize when changes in the patient warrant medical referral.

The family members/loved-ones can be instructed to look for specific symptoms/complaints, and call the clinician, if necessary, said Dr. van Osch. But those closest to the patient may not always be the best persons to assess their symptoms.

It is important that tasks are divided, said Dr. van Osch. The close family members/loved-ones are crucial for the mental assistance and for the day-to-day treatment with oral meds. At the same time the patient often does not want to "burden" the close family members/partners with too many complaints, and might withhold information, being afraid to be seen as "nagging" or "complaining" all the time.

Therefore observation is important by the family members/loved-ones, but objective assessment by a nurse or doctor should not be left out. Being close is important in the last stages of life (or any stage for that matter) but being too close to the patient may hamper an objective observation.

There is a difficult level of division [It is very difficult to distinguish] between close and not too close.

Open communication is crucial, but often difficult, when everyone is around, [wanting] to help.

Take time out to be alone with the patient, is important, so he/she can feel free to talk/complain and express his/her own worries, without being burdened by the too close family/loved-ones.

Assessment tools

In people with HIV, there are often many symptoms; each of these can have several different dimensions that detract from the patients quality of life and cause the patient distress in a variety of ways. There should be regular comprehensive assessments of the patients symptoms. Each symptom should be singled out to explore its dimensions and impact separately. At the same time, the care provider should try to learn his or her biggest issues: what problems are the most troublesome from day-to-day?

A variety of tools exist to help formal and less formal healthcare workers assess a patients palliative care needs. Many of these were designed for patients with cancer in mind, and are not adapted to a limited resources environment. We list a few below the following caveat from Dr. Doug Wilson.

Simple symptom questionnaires are an appealing tool for palliate care provision, but presuppose that facilities are available to address the issues identified in the questionnaire. Concepts such as depression and anxiety are tricky to translate between cultures, and the terminology used to express such feelings may differ widely (for example a Zulu phrase to express sadness such as there is a stone over my heart may be missed by a healthcare worker familiar with the phrase I am feeling blue). The questionnaires also need to address issues related to economic hardship, family disruption and the emotional pain related to having to leave behind young children in impoverished circumstances.

Another crucial difference between an HIV death and a cancer death is that severe physical pain is seldom a feature, and that many causes of HIV death are due to potentially treatable conditions. HIV-related peripheral neuropathy requiring opiates is the obvious exception.

He points out: Increasing physical frailty and emaciation, dementia, and diarrhoea are often the most pressing problems. He also highlights the following problems, which are potentially reversible with appropriate care:

Acute problems that may require hospitalisation:

  • Shortness of breath associated with cough or chest pain (community acquired pneumonia or Pneumocystis pneumonia)
  • Confusion and disorientation (sepsis or electrolyte abnormalities)
  • Severe headache (meningitis)
  • Seizures or weakness on one side of the body (CNS toxoplasmosis, tuberberuloma or stroke)
  • Inability to eat or drink due to painful mouth or painful swallowing (oral and oesophageal candidiasis)
  • Recent onset severe weight loss associated with drenching night sweats (need to exclude tuberculosis)

More chronic misery-making problems:

  • Dry and itchy skin
  • Genital candidiasis and herpetic ulceration
  • Chronic watery diarrhoea, often associated with food ingestion
  • Bedsores and contractures

Caregiver/patient information sheet: Common symptoms requiring referral to the formal health care provider

Emergency conditions indicating need to contact primary care provider (either home care or hospice nurse or primary clinic) immediately if this change in condition was not anticipated. Depending on the patients desires, many of these symptoms can be managed comfortably at home. If a family is terribly frightened by these changes, they may choose emergency assistance (where available).

  • Severe shortness of breath (difficulty talking or walking) with sudden onset
  • Falling
  • Seizures
  • Fainting
  • Mental status changes, including memory loss and personality changes that are not associated with dying process (Note: increased supervision of client is warranted as soon as a change is noticed)
  • Difficulty swallowing
  • Difficulty with urination
  • Severe or acute new pain
  • Chest pain
  • Bleeding (rectum, throat, coughing up blood, blood in urine) (Note: some advanced liver disease conditions can increase risk of bleeding)

Chris Green recommends adding the following signs/symptoms:

  • face becomes blue, respiration more than 36 per minute
  • Patient tries to commit suicide

Urgent conditions

URGENT CONDITIONS

Urgent conditions indicating need for prompt reassessment by home-based care, hospice or clinic staff within 24 hours. Most of these symptoms can be comfortably managed at home with adjustments to medication or treatment plan.

If travel to clinic setting for re-evaluation is without undue strain, patients may desire to go to clinic setting for assessment.

  • Diarrhoea (five times a day for more than five days)
  • Persistent headaches not responding to over-the-counter medications
  • Fever over 101° for more than two days
  • Dizziness
  • Uncontrolled chronic pain
  • Visual changes (including blurred vision, floating spots, loss of sight)
  • Persistent cough
  • Nausea and vomiting
  • Rashes and skin changes

Chris Green recommends adding the following signs/symptoms:

  • Fever over 101° F/38,3° C for more than two days, particularly if associated with:cough, accelerated breathing and panting, stiff neck, serious pain, serious diarrhoea, vomiting, pregnancy, skin inflammation, if malaria is endemic in your area
  • Uncontrolled chronic pain, particularly if associated with: fever, bleeding, breathing difficulties, rash, vomiting, stiff neck
  • Persistent cough, particularly if associated with: fever, pain in the chest, saliva is mixed with blood
  • Nausea and vomiting, particularly if vomiting continues for more than one day, is mixed with blood, looks like coffee powder, or smells like diarrhoea, severe stomach pain
  • Rashes and skin changes, particularly if patient is unable to tolerate the pain, of looks very weak, there is swelling which feels hot and looks red, there is dark purple swelling which does not itch and doesnt give pain, but doesnt get better; there are pus-filled, smelly, hot or painful wound; or it is associated with fever
  • Unable to take fluids

For women:

  • smelly or coloured fluids come out from the vagina
  • pain at the base of the stomach together with fever

Non-urgent conditions

NON-URGENT CONDITIONS

Non-urgent conditions that require follow-up attention by the primary care provider but can wait more than 24 hours (Note: family should contact clinic and arrange follow-up appointment within the next two weeks)

  • Uncontrolled weight loss is to be anticipated with decreased intake and advanced disease
  • Persistent insomnia
  • Any other symptoms distressing to the client

Chris Green recommends adding the following signs/symptoms:

  • Depression for more than two weeks, or unwilling to work or breaking relationships

Links to other assessment tools

The following link will connect you to a site where you can download three portable document format (PDF) files of 1) The Memorial Symptom Assessment Scale; 2) The Memorial Symptom Assessment Scale Short Form; and 3) How to score the test. You will need Adobe Acrobat Reader to view the files.

http://www.mywhatever.com/cifwriter/content/41/pe1262.html

The MD Anderson Cancer Center at the University of Texas has made its Brief Pain Inventory (BPI) symptom assessment tool available online. This tool has been validated in a number of languages, including several spoken in developing countries. The tool has now been translated into Afrikaans, Finnish, Hmong, Polish, Sepedi, Tswana, Xhosa and the Center would like to collaborate with investigators to validate these versions. Contact information, as well as a free PDF file of the BPI may be downloaded from Center-sponsored site. You will need Adobe Acrobat Reader to view the file. Follow this link:

http://www.mdanderson.org/departments/prg/display.cfm?id=0EE7830A-6646-11D5-812400508B603A14&pn=0EE78204-6646-11D5-812400508B603A14&method=displayfull

The Edmonton Regional Palliative Care Program of Alberta, Canada has produced the site www. palliative.org. Although the site is intended for primarily a Canadian audience, it contains a great deal of clinically useful material, including a variety of assessment tools, practical palliative care tips, a journal watch and more. Two of the assessment tools can be downloaded in PDF format include the Mini Mental State Examination, one of the most frequently used neuropsychological tests in the clinical evaluation of mental status changes, and the Edmonton Symptom Assessment System (ESAS). ESAS was designed for the assessment of nine symptoms that are common in cancer patients: pain, tiredness, nausea, depression, anxiety, drowsiness, loss of appetite, impaired well-being and shortness of breath, and includes a line for other problems. Go to the following link to download these assessment PDFs:

http://www.palliative.org/PC/ClinicalInfo/AssessmentTools/AssessmentToolsIDX.html

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.