Pain management and palliative care in primary care

Source: WHO PCPNC 2015 (pregnancy danger signs); WHO-ICRC Basic Emergency Care 2018; IMCI chart booklet 2014; WHO cancer pain guideline 2018, Table 1

The goal

WHO sets a realistic goal: reduce pain to a level that allows a quality of life the patient finds acceptable. It may not be possible to remove all pain. Do not label pain "refractory" too early: often the real problem is that good treatment was never available.

Assess the whole person

Pain is shaped by the body, the mind, the family, culture and faith. Anxiety and depression make pain worse, and pain makes them worse. WHO asks for an assessment that is as full as the patient's comfort allows, then repeated at regular intervals.

Source: WHO cancer pain guideline 2018, sections 5.1 to 5.4 and Annex 1 (brief pain inventory)

When the person cannot tell you

WHO lists example tools (not recommendations) for adults who cannot report pain: the Pain Assessment in Advanced Dementia (PAINAD) scale and the Critical Care Pain Observation Tool. Both score what you can see: breathing, sounds, face, body movement, and whether the person can be consoled. In practice, watch the face and body during movement and care, ask the family what is normal for this person, and treat a change in behaviour as possible pain.

Children

WHO defines chronic pain in children as pain that persists or recurs for more than three months. It may be primary (no clear cause found) or secondary to a clear cause such as cancer or sickle cell disease. The 2020 WHO guideline asks for a biopsychosocial assessment using tools suited to the child's age, setting and culture, and for a full search for underlying conditions alongside pain relief.

• Ask the child first if they can talk. Use words they use ("owie", "it hurts").
• Watch play, sleep, feeding and movement. A quiet, still child may be in more pain than a crying one.
• Ask the carer what has changed. Carers usually notice pain first.
• Record the score and the tool you used, so the next worker can compare.

Source: WHO guidelines on the management of chronic pain in children 2020, executive summary and best practice statements 1 to 10

I want to understand your pain properly so we can treat it well. Show me where it hurts. If 0 is no pain and 10 is the worst you can imagine, what number is it now?

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018

Four principles

Source: WHO cancer pain guideline 2018, section 5.6

The ladder is a teaching tool, not a rule

The three-step ladder (non-opioid, then opioid for mild to moderate pain, then opioid for moderate to severe pain) is still useful for teaching. The 2018 guideline says it is only a general guide and cannot replace individual planning. The key change: do not make a person with severe pain climb the ladder. Start with an analgesic strong enough for the pain you have measured.

What WHO recommends

Source: WHO cancer pain guideline 2018, recommendations summary and sections 6.1 to 6.4

Safety and access

• Ask about past substance use and watch for signs of misuse; it should shape, not block, prescribing.
• Teach families to store opioids safely out of the reach of children, and to return unused medicine to the pharmacy.
• Barriers to morphine are often regulations, attitudes and supply, not clinical risk. Find out how your district orders and stores it.

Source: WHO cancer pain guideline 2018, sections 5.3 and 5.5

Source: WHO-ICRC Basic Emergency Care 2018; WHO cancer pain guideline 2018, Annex 6

Forms on the WHO list

Oral liquid 10 mg in 5 mL; immediate-release tablet 10 mg; prolonged-release tablets 10, 30 and 60 mg; injection 10 mg in 1 mL.

Typical starting doses for chronic cancer pain (adults with no kidney or liver disease)

Source: WHO cancer pain guideline 2018, Annex 6, Table A6.1 (adapted by WHO from Cherny et al. 2015)

Titrate step by step

1. Give immediate-release oral morphine regularly every 4 hours. WHO's chronic pain dose range for adults is 2 to 20 mg every 4 hours, increased according to need. Use lower doses or avoid in older and frail people and in kidney or liver impairment.
2. Prescribe a rescue dose for pain between regular doses. WHO says a rescue dose of 50 to 100% of the regular 4-hourly dose may be considered, using immediate-release morphine, never slow-release.
3. Review every day or two at first. Add up the rescue doses used in 24 hours; if several are needed each day, increase the regular dose.
4. Once the daily need is stable, slow-release morphine can be given every 12 hours, based on the daily requirement found with immediate-release morphine. Slow-release tablets are never crushed and never used for rescue.
5. If the person cannot swallow, give morphine subcutaneously at about half the oral dose (oral to subcutaneous ratio 2:1). Example from WHO: 60 mg in 24 hours by mouth becomes 30 mg in 24 hours subcutaneously.

Source: WHO cancer pain guideline 2018, section 6.2.2 and Annex 6 (morphine profile; Table A6.3)

Side effects to expect and prevent

Source: WHO cancer pain guideline 2018, Annex 6 (morphine and naloxone profiles); EP PHC medicine list, WHO 2018

Other opioids

Codeine is about one tenth as strong as morphine, and how much morphine the body makes from it varies a great deal between people. WHO does not recommend one opioid over another, but immediate-release oral morphine is the one that must always be available.

Stopping safely

Source: WHO cancer pain guideline 2018, Annex 6, Table A6.5

This is morphine. Used the way I show you, it is safe and it will not make you an addict. Take it every 4 hours by the clock, even if the pain is less. If pain comes back between doses, take the extra dose on this card. Keep it locked away from children.

Source: WHO cancer pain guideline 2018, Table 1 (spinal cord compression); HEARTS-D 2020 (urgent foot referral); WHO PEN 2020 (cancer warning signs)

Recognise neuropathic pain

Source: WHO cancer pain guideline 2018, Table 1 (classification by neural mechanism)

Adjuvant medicines: what the evidence says

• WHO made no recommendation for or against antidepressants or anticonvulsants for cancer-related neuropathic pain, because good evidence is lacking.
• WHO notes that tricyclic antidepressants are commonly used, and suggests an individual trial when pain is not relieved: start, review, and stop if there is no benefit.
• Amitriptyline is in the WHO essential palliative care package. WHO gives a typical starting dose of 10 to 25 mg at bedtime, maximum 100 mg at bedtime where blood levels cannot be checked. Warn about dizziness on standing, sleepiness, dry mouth, constipation and confusion, especially in older people.
• Treat the cause where you can, and keep paracetamol, an NSAID and, in cancer, an opioid as the main analgesics.

Source: WHO cancer pain guideline 2018, section 6.3 and Annex 6, Table A6.1; EP PHC, WHO 2018

Chronic non-cancer pain

WHO's humanitarian palliative care guide states that opioids are not usually first-line treatment for chronic pain outside cancer, palliative and end-of-life care, except in special circumstances with strict monitoring, and that doctors should avoid giving morphine for mild pain or chronic non-malignant pain.

Source: WHO guideline on non-surgical management of chronic primary low back pain in adults, 2023 (WHO news release, 7 December 2023)

Children with chronic pain

• WHO 2020: physical therapies, and psychological therapies such as cognitive behavioural therapy, relaxation and acceptance-based therapy, may be used; psychological therapy can be face to face or remote.
• Medicines should be tailored to the specific condition.
• Morphine may be used for end-of-life care, and by trained providers for chronic pain in life-limiting conditions, under opioid stewardship: right indication, continuous monitoring, a clear plan to continue, taper or stop, and safe storage and disposal.
• WHO 2020 gives no medicine doses for children: use your national paediatric formulary.

Source: WHO guidelines on the management of chronic pain in children 2020, recommendations 1 to 4

Source: WHO-ICRC Basic Emergency Care 2018; WHO PEN 2020 palliative care practice points

WHO lists the commonest distressing symptoms that primary care workers must be able to prevent and relieve: pain, breathlessness, fatigue, nausea and vomiting, diarrhoea, constipation, dry mouth, itch, bleeding, wounds, anxiety, low mood, confusion or delirium, and dementia. The rule for every symptom is the same: ask what is causing it, treat what is reversible, relieve what is not.

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018 (core competencies)

The essential package medicines for symptoms

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018, Table 1 (EP PHC) and text on haloperidol; humanitarian palliative care guide, WHO 2018 (morphine for terminal dyspnoea)

Delirium: always check the glucose

Basic Emergency Care teaches: always check the blood glucose in a confused or unconscious person; if it is below 3.5 mmol/L, or cannot be measured, give glucose. Small pupils with slow breathing suggest opioid toxicity: give naloxone.

Source: WHO-ICRC Basic Emergency Care 2018, Disability (D) assessment

Simple care families can give

• Mouth care, wound care and giving medicines: WHO asks clinicians to train and equip willing family carers to do these.
• Pressure-reducing mattresses, adult pads, urinary catheters and nasogastric tubes are on the WHO essential equipment list.
• Crushed metronidazole on a smelly wound, and petroleum jelly for dressings, are on the essential medicines list for palliative care.
• Oral fluconazole for mouth thrush that makes eating painful.

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018, Table 1 and text

Source: Humanitarian palliative care guide, WHO 2018, principles 3 and 4

Signs that death is near

Common signs: the person is bed-bound, sleeps most of the time, takes only sips or nothing, cannot swallow tablets, and breathing changes. When these appear in someone with an advanced illness and no further disease-modifying treatment is available or wanted, the sole aim of care may be comfort.

A checklist for the last days at home

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018 (dying patients; social support); WHO cancer pain guideline 2018 (subcutaneous route; Table A6.3)

After the death

• Ask the family to return unused opioids to the pharmacy or clinic.
• Offer bereavement support. WHO suggests support groups led by trained staff; some support can be given by trained community health workers.
• Watch for complicated grief in the months after, especially in children and in carers who were alone.

Source: WHO cancer pain guideline 2018, section 5.3; Integrating palliative care and symptom relief into primary health care, WHO 2018

Your father is now very weak and I think he is dying. He may have only days. We will keep him comfortable and free of pain. You do not need to make him eat or drink. Sitting with him, talking to him and holding his hand are the most important things now.

Source: mhGAP Intervention Guide 2.0, 2016 (self-harm); humanitarian palliative care guide, WHO 2018 (neglect and abandonment)

What WHO asks of every primary care worker

• Gently explore the patient's and family's understanding of the illness and its likely course, and correct it as needed, in a culturally appropriate way.
• Ask local colleagues how bad news is best given in this community.
• Explain that care to maximise comfort is the best that medicine can offer when cure is not possible, and that there is never an intention to hasten death.
• Give families timely, accurate information; share decisions; use words that match the person's age, development and language; give enough time in a comfortable, private space.

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018; WHO guidelines on the management of chronic pain in children 2020, best practice 8

A six-step conversation

This structure is a practical teaching aid, not a WHO protocol. Adapt it to local custom: in some families news is shared first with an elder, in others the patient decides.

The family carer

• Train and equip willing carers in basic nursing: mouth and wound care, turning, giving medicines.
• Ask about the carer's own needs. WHO notes that carers are usually women, often also working, caring for children and living in poverty.
• Community health workers can visit often, give emotional support, spot uncontrolled symptoms and unmet needs for food or shelter, and report to the supervising nurse.
• Children in the family need honest, age-appropriate explanations and a trusted adult.

Source: Integrating palliative care and symptom relief into primary health care, WHO 2018

Whatever happens with the illness, we will not abandon you. We will keep treating the pain and other symptoms, and we will support your family.

Source: Humanitarian palliative care guide, WHO 2018, Tables 1 and 2 and section on expectant patients

Triage with palliative care built in

Source: Humanitarian palliative care guide, WHO 2018, Table 2 (adapted by WHO from ICRC)

Who needs palliative care in a crisis

• People with injuries or illness that cannot be survived with the care available.
• People with advanced chronic illness (cancer, heart failure, HIV, kidney disease) who have lost access to their usual care. If disease-modifying treatment might still help, try hard to get it through the local or regional system first.
• People with acute severe pain from injuries, burns or surgery.
• People with psychological suffering: grief, acute stress, depression and anxiety. Offer psychological first aid to all patients and families.

The essential package for humanitarian emergencies

WHO's humanitarian package uses the same medicines as the primary care package: oral immediate-release and injectable morphine, naloxone, paracetamol, ibuprofen, amitriptyline, dexamethasone, diazepam, haloperidol, fluoxetine, metoclopramide, an antihistamine, hyoscine butylbromide, furosemide, laxatives, loperamide, omeprazole, fluconazole, metronidazole for wounds, petroleum jelly and oxygen. Equipment includes pressure-reducing mattresses, catheters, nasogastric tubes, adult pads, opioid lock boxes, and rechargeable torches where there is no electricity. WHO says these medicines and equipment should be in all emergency health kits.

Source: Humanitarian palliative care guide, WHO 2018, Table 7

Morphine: access with safety

• Doctors caring for people with moderate or severe pain, or with breathlessness at the end of life, should be trained and legally allowed to prescribe oral and injectable morphine, with enough supply that families do not need frequent, costly trips.
• Store morphine in a sturdy, locked, fixed box or cupboard. Keep records of stock, of what is dispensed to each patient, and of what is returned or wasted.
• Where crime is high or home supplies are stolen, families may be put at risk by keeping morphine: give it from a secure facility, or admit the patient if needed.
• Give oral rather than injectable morphine whenever clinically possible.

Source: Humanitarian palliative care guide, WHO 2018, section on morphine and other opioids

The Sphere Handbook (2018) includes a health standard on palliative care alongside its standards on non-communicable diseases and mental health. See also Keeping NCD care going in emergencies and Mental health and psychosocial support.

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