HIV/AIDS palliative care • Symptom relief • ART • Opportunistic infections • Nutrition • Confidentiality

Palliative Care in HIV/AIDS Management

A comprehensive Uganda-relevant guide to symptom control, antiretroviral care, nutrition, psychosocial support and nursing practice

Learning objectives

• Explain why palliative care should be integrated early with HIV testing, ART, opportunistic-infection treatment and prevention.
• Assess pain, breathlessness, cough, diarrhoea, constipation, nausea, fatigue, confusion, depression, stigma and nutrition.
• Recognize HIV-specific causes of symptoms, including neuropathy, oral/oesophageal candidiasis, tumours, infections and ART toxicity.
• Protect HIV confidentiality, informed consent, dignity and family safety.
• Provide nutrition, adherence, caregiver and community support and know when to escalate.

1. HIV palliative care: what it is and is not

HIV palliative care relieves suffering and improves quality of life for people living with HIV and their families. It includes physical, psychological, social and spiritual care, symptom management, ART support, opportunistic-infection treatment, prevention, adherence, nutrition and advance planning. It may be needed after diagnosis, during stable ART, with advanced disease, cancer, treatment toxicity or at the end of life.

• Not “giving up”: effective ART and palliative care can coexist.
• Not only morphine: counselling, infection care, nutrition, social support, spiritual care and prevention are essential.
• Not only for AIDS: palliative support is appropriate at any stage when symptoms or distress are significant.

2. Ethical and confidentiality foundations

• Obtain consent for HIV testing, disclosure, treatment and family involvement.
• Protect HIV status as confidential information; disclose on a legitimate need-to-know basis and according to current law/policy.
• Explain benefits, risks and side effects of ART and symptom medicines; respect refusal while exploring barriers and capacity.
• Use non-judgmental language; avoid stigma based on sexuality, gender, pregnancy, substance use, age or route of infection.
• Assess intimate-partner violence, coercive disclosure, child safeguarding and unsafe home situations privately.

3. Comprehensive palliative assessment

Domain	Assess
Symptoms	Pain, dyspnoea, cough, fever, diarrhoea, vomiting, constipation, oral lesions, dysphagia, itching, fatigue, neuropathy, headache, confusion and sleep.
HIV/medical status	ART regimen/adherence, viral load/CD4 where available, opportunistic infections, TB exposure, malignancy, renal/hepatic function, pregnancy and comorbidities.
Nutrition	Weight trend, appetite, mouth/swallowing, food security, diarrhoea, malabsorption, muscle loss, hydration and safe water/food.
Psychological	Anxiety, depression, trauma, substance use, hopelessness, suicide/self-harm and treatment beliefs.
Social	Disclosure safety, stigma, housing, income, transport, children/dependants, caregiver burden and access to medicines.
Spiritual/cultural	Meaning, faith, guilt, hope, traditional practices, rituals and chosen support.

4. Pain in HIV/AIDS

Common causes

• Infections, oral/oesophageal candidiasis, herpes zoster neuritis, Kaposi sarcoma, lymphoma and other tumours.
• Peripheral neuropathy from HIV, diabetes, chemotherapy or some ART medicines.
• Pressure injuries, musculoskeletal disease, headache, nerve compression, visceral disease and comorbid hypertension/diabetes.
• Procedures, immobility, constipation, urinary retention, anxiety and total pain.

Assessment and treatment

• Use a validated 0–10 or age-appropriate scale; record site, quality, radiation, timing, function and patient goal.
• Look for new neurological deficit, meningism, severe headache, fracture, sepsis or abdominal emergency.
• Use the WHO ladder and mechanism-directed adjuvants; paracetamol/NSAID suitability depends on liver, kidney, gastrointestinal, bleeding and ART risks.
• Neuropathic pain may require a gabapentinoid, TCA or SNRI under protocol; monitor sedation, renal function and interactions.
• Opioids may be appropriate for moderate-to-severe pain; prevent constipation, monitor sedation/respiration and reconcile sedatives.
• Manage oral candidiasis, herpes zoster, TB, malignancy or other cause directly with current HIV/oncology guidance.

5. Breathlessness, cough and chest symptoms

• Causes: bacterial or Pneumocystis pneumonia, TB, anaemia, pulmonary hypertension, heart failure, malignancy, pleural effusion, bronchospasm, weakness and anxiety.
• Assess: respiratory rate/effort, oxygenation, fever, chest findings, cough/sputum, weight, ART/OI prophylaxis, exposure and danger signs.
• Nursing relief: upright position, fan/airflow, calm communication, energy conservation, prescribed oxygen for hypoxaemia and medication according to cause.
• Urgent escalation: cyanosis, severe distress, haemoptysis, shock, altered consciousness, unilateral absent breath sounds or rapidly worsening symptoms.
• Low-dose morphine may relieve refractory breathlessness under the palliative protocol, but assess respiratory depression, renal function and sedative combinations first.

6. Oral, gastrointestinal and nutritional symptoms

Oral/oesophageal disease

• Inspect mouth for candidiasis, ulcers, Kaposi lesions, dental disease, dryness, pain and bleeding.
• Provide gentle oral hygiene, soft preferred foods, safe fluids and prescribed antifungal/analgesic treatment.
• Escalate inability to swallow, drooling, stridor, dehydration, severe pain or suspected oesophageal obstruction.

Diarrhoea

• Assess frequency, blood, fever, pain, dehydration, recent antibiotics, ART, laxatives, opportunistic infection, HIV enteropathy and overflow around impaction.
• Send appropriate stool tests and treat the cause according to current Uganda HIV guidance.
• Use oral rehydration solution or IV fluids when indicated; stop unnecessary laxatives and protect perianal skin.
• Loperamide may be used only when invasive infection, ileus and severe colitis are not suspected and local guidance permits. Metronidazole or other antimicrobials should be prescribed for a defined indication, not automatically.

Constipation, nausea and obstruction

• Review opioids, anticholinergics, iron, dehydration, low intake and immobility; use a prophylactic bowel plan with morphine when appropriate.
• Assess vomiting, distension, stool/flatus and peritonism; avoid laxatives/prokinetics blindly in complete obstruction.
• Choose antiemetics by likely cause, check QT/sedation and provide mouth care.

7. Fatigue, weakness and sleep

• Assess anaemia, infection, malnutrition, dehydration, depression, sleep, pain, ART/OI medicines and endocrine/renal disease.
• Use energy conservation, planned rest, gentle activity, mobility aids and treatment of reversible causes.
• Reduce caffeine/nicotine near bedtime, establish a calm sleep routine and address pain, cough, pruritus or anxiety.
• Use sedatives only when clearly indicated; monitor falls, delirium and respiratory depression.

8. Confusion, delirium and neurological symptoms

• Consider HIV-associated neurocognitive disorder, meningitis/encephalitis, cryptococcosis, TB, toxoplasmosis, stroke, seizures, hypoxia, hypoglycaemia, renal/hepatic failure, medicines and withdrawal.
• Perform urgent neurological and infection assessment for new headache, fever, seizure, focal deficit or reduced consciousness.
• Provide a calm, familiar environment, glasses/hearing aids, orientation and family support; avoid restraints unless immediate safety requires them.
• Investigate and treat reversible causes; use prescribed symptom medicines cautiously and monitor QT, sedation and extrapyramidal effects.

9. Nutrition and HIV: the vicious cycle

The supplied reference describes a bidirectional cycle: HIV increases nutrient requirements and may impair intake, absorption and use; malnutrition increases susceptibility to infections, weakness and poor treatment tolerance.

Nutrition assessment

• Weight/BMI and trend, mid-upper-arm circumference where appropriate, muscle loss, oedema, intake, stool, oral lesions, swallowing and food security.
• Clinical, biochemical, dietary, psychosocial and environmental factors; assess safe water and food hygiene.
• Consider pregnancy, age, activity, viral/clinical state and comorbid diabetes, hypertension or renal disease.

Care plan

• Offer balanced, locally available energy- and protein-containing foods in small frequent meals; accommodate culture and preference.
• Treat oral thrush, nausea, diarrhoea, constipation, pain and depression that prevent eating.
• Use therapeutic supplementary foods or dietitian referral for severe malnutrition; consider enteral/parenteral nutrition only when benefits and goals justify burdens.
• Teach safe water, food hygiene, handwashing, storage and prompt treatment of opportunistic infections.
• Monitor weight, intake, muscle function, oedema, glucose and electrolytes; screen for refeeding risk before rapid nutrition.

10. ART, opportunistic-infection treatment and palliative care

• Do not stop ART automatically when palliative care begins. Review adherence, swallowing, interactions, toxicity, patient goals and current guideline recommendations.
• Use current Uganda HIV guidelines for regimen selection, viral-load monitoring, TB/HIV co-treatment, prophylaxis, pregnancy and paediatric care.
• Check interactions with morphine, anticonvulsants, steroids, antifungals, rifampicin, anticoagulants, sedatives and herbal products.
• When oral administration fails, involve HIV/pharmacy teams about liquid formulations, alternative routes, temporary interruption risks and restart plans.
• Integrate infection prevention, vaccination, safer sex, partner services and stigma-sensitive counselling.

11. Psychosocial, family and spiritual support

• Ask who knows the HIV status and whether disclosure is safe. Never disclose to family or partners without consent or a lawful safety basis.
• Screen anxiety/depression using a validated tool where available, but follow a clinical interview and suicide-risk assessment.
• Address grief, stigma, sexuality, employment, housing, food insecurity, child care, violence and transport.
• Offer peer/community support, counsellor, social worker, faith leader or traditional support according to preference and safety.
• Support caregivers with education, respite, infection-prevention training and bereavement care.

12. Nursing responsibilities

• Assess symptoms and function each visit; use validated scales and document trends.
• Administer ART, OI treatment and symptom medicines safely; monitor adverse effects and interactions.
• Provide mouth, skin, pressure, hydration, nutrition, hygiene and mobility care.
• Teach adherence, safe medicine storage, food/water safety, constipation prevention and emergency warning signs.
• Advocate for confidentiality, stigma-free care, food/community resources and timely referrals.
• Participate in multidisciplinary meetings and bereavement support.

13. Palliative emergencies in HIV/AIDS

Perform ABCDE, isolate or use infection-control precautions when indicated, call senior/HIV/medical support, treat reversible causes and communicate goals and confidentiality.

14. Clinical cases

15. Quick self-test

1. Why should palliative care be integrated with ART?
2. Name six HIV-specific or common causes of pain.
3. What must be assessed before disclosing HIV status to a family member?
4. List four nutrition domains in PLHIV.
5. What are urgent neurological red flags?
6. Why should medicines be checked for ART interactions?

Answers

1. It relieves symptoms and distress while preserving disease control, adherence, infection prevention and quality of life.
2. Neuropathy, herpes zoster, oral/oesophageal candidiasis, Kaposi/lymphoma, infections, pressure injuries, nerve compression, diabetes and treatment toxicity.
3. Patient consent, capacity, safety, disclosure preference, risk of violence/coercion and applicable law/policy.
4. Anthropometric/weight trend, dietary intake, clinical status, biochemical status, psychosocial/food security and living environment.
5. New severe headache, fever/meningism, seizure, focal weakness, sensory change, altered consciousness, papilloedema or rapidly progressive symptoms.
6. ART and medicines such as rifampicin, anticonvulsants, antifungals, steroids, opioids and herbs can alter metabolism, toxicity or absorption.

Key take-home points

• HIV palliative care is holistic, stigma-sensitive and integrated with ART and infection treatment.
• Confidentiality of HIV status is a core clinical and ethical duty.
• Assess pain, nutrition, diarrhoea, oral disease, neuropathy, breathlessness, mental health and social safety at every meaningful review.
• Treat reversible causes, prevent medication harm and refer emergencies promptly.
• Nutrition and caregiver support are clinical interventions, not optional extras.

Further study and references

• Palliative Care in HIV/AIDS and Nutrition — supplied Slideshare reference
• WHO HIV treatment and care
• WHO: Palliative care
• Related lesson: Symptom control and assessment
• Related lesson: Nursing care for common symptoms

Educational resource for supervised learning. Verify current Uganda HIV, ART, nutrition, confidentiality and palliative-care guidance before practice.