Relieving pain at the end of life : rights, options and the role of the team

Untreated pain at the end of life remains one of the great fears — and one of the great avoidable realities — of care in a Nursing home. Repeated studies show that a significant proportion of terminally ill residents suffer from inadequately managed pain. Not due to a lack of therapeutic means — these exist and are effective — but due to a lack of training, vigilance, and sometimes therapeutic courage in the face of treatments that are still poorly understood.

This guide addresses pain at the end of life head-on — its realities, its assessment tools, its treatments, the rights that frame it — to provide caregivers and families with the benchmarks they need to demand and obtain dignified relief.

1. Untreated pain: an unacceptable avoidable reality

No one should die in pain in 2026. Therapeutic tools to relieve pain at the end of life are available, effective, and framed by clear rights. French law explicitly recognizes the right to pain relief — even if the necessary treatments may have the side effect of slightly shortening life. This principle, known as the "double effect," has been established in medical ethics for decades and codified in the Leonetti law.

Yet, pain is under-assessed and under-treated in many Nursing homes. The causes are multiple: fear of opioids among some caregivers or doctors, residents who do not complain (either out of resignation or because they can no longer communicate), lack of training on assessment tools suitable for demented individuals, insufficient communication between teams. Identifying these obstacles — and removing them — is an absolute priority.

2. Assessing pain: tools and methods

We can only treat well what we assess well. Pain assessment at the end of life must be regular, systematic, and recorded in the care file — not just triggered when the resident complains.

For residents capable of expressing themselves verbally, the numerical scale (NS, from 0 to 10) or the simple verbal scale (no pain / mild / moderate / intense / unbearable) are the reference tools. Simple, quick, validated — they allow for assessment in a few seconds during each care session.

The assessment must focus not only on background pain but also on the pain induced by care — mobilizations, changes, oral care, personal hygiene — which are often the most intense and the most overlooked. Pre-emptive analgesic medication before painful care is a simple practice that profoundly changes the resident's experience.

3. Assessing pain in a demented resident

Residents with dementia — who represent the majority of end-of-life residents in Nursing homes — cannot always verbalize their pain. This does not mean they do not suffer. It means that specific behavioral observation tools are needed.

The DOLOPLUS-2 scale is the validated reference tool in France for assessing pain in non-communicating elderly subjects. It evaluates 10 behaviors grouped into three dimensions: somatic impact (complaints, pain-relieving positions, protection of painful areas), psychomotor impact (tone disorders, refusal of mobilizations), and psychosocial impact (communication, social life, behavior). A score equal to or greater than 5 out of 30 indicates pain that must be treated.

The ALGOPLUS scale is shorter (5 items) and particularly suitable for assessing acute pain during care in demented elderly subjects. It evaluates the face, gaze, complaints, body attitude, and behavior. A score of 2 or more indicates pain.

4. Pain relief medications at the end of life

The pharmacological treatment of pain at the end of life follows a progressive logic, adapted to the intensity of the pain and the resident's condition. Pain relief medications are classified into three levels according to the WHO classification.

The level 1 includes paracetamol — often underused despite being effective for mild to moderate pain and well tolerated. Its injectable form is particularly useful at the end of life when the oral route is no longer possible. The level 2 includes weak opioid analgesics (tramadol, codeine) for moderate pain. The level 3 includes morphine and strong opioids for severe pain.

At the end of life, the route of administration must be adapted to the resident's condition. When swallowing becomes difficult or impossible, subcutaneous, transdermal (morphine or fentanyl patches), or intravenous routes take over. The establishment of a preventive subcutaneous route — before the condition deteriorates to the point of making any access impossible — is a good palliative practice that avoids decisions in emergencies.

5. Morphine: demystifying to better care

Morphine concentrates the most common fears and resistances — among families, but also sometimes among caregivers and doctors. These fears have a real cost: residents who suffer unnecessarily because an effective treatment is delayed or underdosed out of fear of unfounded effects.

The clinical reality, documented by decades of research in palliative care, is clear: morphine prescribed at an appropriate dose to relieve pain at the end of life does not hasten death. It relieves. The benefit of pain relief is incomparably greater than the theoretical risk of an effect on lifespan — which, in well-conducted studies, is not demonstrated.

6. Deep and continuous sedation: what it is

Deep and continuous sedation until death is a right recognized by the Claeys-Leonetti law of 2016 for terminally ill patients whose suffering is refractory to all treatments. It consists of administering sedative medications to induce and maintain a state of unconsciousness until death.

Deep and continuous sedation is not euthanasia. It does not aim to cause death — it aims to suppress the consciousness of suffering that no treatment can relieve. Death occurs from the disease, not from the sedative. This ethical and legal distinction is fundamental.

It is indicated in specific situations: refractory suffering — physical, psychological, or existential — in the terminal phase, or to accompany the cessation of life-sustaining treatment whose cessation would lead to unbearable suffering in the short term. Its implementation involves a collegial medical decision, informing and, if possible, obtaining the consent of the resident or their trusted person, and traceability in the care record.

7. Non-drug approaches to relief

Relief from pain at the end of life is not limited to medications. Non-drug approaches, complementary to treatments, can significantly improve the comfort of the resident — and are accessible to the entire caregiving team.

8. The caregiver's monitoring role

The caregiver who spends the most time with the resident — often the nursing assistant — is the first observer of pain. Their monitoring and reporting role is irreplaceable. A caregiver trained to recognize behavioral signs of pain, who systematically notes them in reports and alerts the nurse when something changes — this caregiver saves their resident from days or weeks of unnecessary suffering.

This vigilance must be organized, not left to individual initiative. Clear protocols — when to assess, with what tool, how to report, when to alert — are quality care tools that structure this collective vigilance.

9. What families can do

Families can play a valuable role in monitoring pain — if they are given the means. Their knowledge of the resident — their usual expressions of pain, their behaviors when they are suffering, their preferred pain-relieving positions — is valuable clinical information that caregivers do not always have.

Encouraging families to report their observations to the team, showing them the behavioral signs to monitor, explaining how to communicate their concerns — this actively integrates them into the care. And clearly telling them that their reports will be taken seriously — not minimized or dismissed with a “it's normal at this stage” which would be an unacceptable response.

10. The right to relief: asserting it

If a family believes that their loved one is suffering and that pain is not being adequately managed, they have the right — and perhaps the duty — to say so, to repeat it, to request a reassessment. They can ask to meet with the coordinating physician, request the intervention of the mobile palliative care team, or in extreme cases, appeal to the rights defender or an external physician.

Untreated suffering at the end of life is not a fatality. It is an avoidable failure that training, vigilance, and therapeutic courage can help prevent. Training teams in the assessment and treatment of pain at the end of life — this is one of the most concrete investments a Nursing home can make for the dignity of its residents.