Post focus: Principles and models of palliative care — person-centred, holistic, ethical and continuous care; facility, outpatient, inpatient, acute-unit, outreach, community, home, hospice and shared-care models with Uganda-oriented implementation and emergency links.
Learning objectives
- Explain what a principle of palliative care is and distinguish a principle from a service-delivery model.
- Apply the core principles to physical, psychological, social, spiritual, cultural, ethical and family needs.
- Describe the patient-and-family unit of care, realistic hope, autonomy, consent, confidentiality, justice and proportional treatment.
- Compare outpatient, inpatient consultation, dedicated-unit, acute palliative-care, day-care, outreach, community, home, hospice and integrated models.
- Select a safe model for a patient’s clinical needs, preferences, resources, geography and emergency risk.
- Design a closed-loop referral, documentation and follow-up plan suitable for Uganda’s health-system levels.
- Recognise when a palliative-care patient needs urgent emergency treatment or specialist escalation.
1. What are principles and what are models?
Principles are the values and clinical behaviours that should remain constant wherever care occurs. A patient should receive respect, symptom relief, honest communication, shared decisions, continuity and support whether care is provided at home, in a health centre, in an emergency department or in a hospice.
A model is the organised way a service delivers those principles: who provides care, where it occurs, how the patient enters and leaves the service, which medicines and equipment are available, how professionals communicate and how follow-up is funded.
No single model fits every patient or every district. Effective systems combine generalist care close to home with specialist advice and a reliable route to hospital, hospice and emergency services. The supplied model presentation describes outpatient, inpatient, day-care, acute palliative-care, community, home and hospice approaches; the Ugandan teaching reference adds facility outreach, roadside clinics, community day care and home-based care.
2. The central aim: quality of life and relief of suffering
Palliative care is an approach for people and families facing serious or life-threatening illness. It seeks early identification and careful assessment of suffering, then prevention and treatment of pain and other physical, psychological, social and spiritual problems. It does not require abandonment of chemotherapy, antiretroviral therapy, dialysis, surgery, disease-modifying treatment or emergency care. The plan changes as needs and goals change.
| What the principle means | What the clinician does | What the clinician avoids |
|---|---|---|
| Care is based on need, not only prognosis | Ask what is troubling the patient now; reassess after treatment and at transitions. | Waiting for a prognostic label or the last days of life before offering help. |
| Quality of life is individually defined | Ask what a good day looks like, what function matters and what trade-offs are acceptable. | Assuming that a laboratory result or clinician preference defines success. |
| Comfort and disease treatment can coexist | Coordinate symptom control with oncology, HIV, cardiac, renal, respiratory, surgical and emergency teams. | Presenting palliative care as “nothing more can be done.” |
| The family is part of the unit of care | Assess caregiver capacity, teach practical skills, provide respite and bereavement support. | Giving the family responsibility without training, medicines, transport or a contact pathway. |
3. Core principles in practice
3.1 Person-centred care and the patient–family unit
- Begin with the person’s story, priorities, language, beliefs, relationships and understanding of illness.
- Confirm who the patient wants involved. Relatives may be essential partners, but an adult with decision-making capacity remains the primary decision-maker.
- Make a care plan that records goals, symptoms, medicines, allergies, functional status, preferred place of care, emergency contacts and review date.
- Adapt communication to age, hearing, vision, literacy, cognitive status and language; use a trained interpreter when needed.
- Revisit preferences after a new diagnosis, admission, major complication, change in prognosis or change in decision-making capacity.
3.2 Affirm life and regard dying as a normal process
Palliative care neither hastens death nor artificially postpones it when treatment no longer offers a proportionate benefit. The team treats reversible causes of distress, explains uncertainty honestly and provides comfort when the body is dying. “Hope” may change from cure to time with family, relief of pain, a meaningful visit, reconciliation, spiritual peace or a dignified death.
3.3 Neither hasten nor postpone death
- Do not use palliative medicines with an intention to cause death. Use proportionate doses, monitor effect and toxicity, and document the indication.
- Do not withhold antibiotics, oxygen, fluids, transfusion, surgery or other treatment automatically; consider reversibility, burden, likely benefit and the patient’s goals.
- When a burdensome intervention is stopped, continue active care: analgesia, symptom relief, mouth and skin care, communication, family support and review.
- Where symptoms remain refractory despite expert treatment, seek specialist advice about proportional palliative sedation and follow local policy; sedation is for intolerable refractory suffering, not to shorten life.
3.4 Early identification and integration
Introduce palliative care at diagnosis of a serious illness or when needs appear, not only in the terminal phase. Early integration supports treatment tolerance, shared decisions, advance care planning, caregiver preparation and prevention of crises. A simple trigger is “Would this patient or family benefit from additional symptom, communication, social or spiritual support?” If yes, start a generalist plan and refer for specialist input when complexity exceeds local capacity.
3.5 Holistic assessment and total pain
Total suffering is multidimensional. Pain may be intensified by fear, family conflict, poverty, stigma, guilt, spiritual distress, breathlessness, insomnia or loss of control. A medicine-only plan is therefore incomplete.
| Domain | Assessment questions | Examples of response |
|---|---|---|
| Physical | What symptoms are present? Severity, onset, pattern, function, examination findings, reversible causes? | Analgesia, antiemetic, oxygen only when indicated, wound care, bowel plan, infection treatment, specialist review. |
| Psychological | What is the patient afraid of? Depression, anxiety, delirium, trauma, suicidal thoughts, loss of control? | Listening, clear information, safety assessment, counselling, psychiatric or psychological referral. |
| Social and practical | Who provides care? Food, transport, housing, income, school, stigma, safety, childcare? | Social-work referral, community health worker, NGO or protection service, benefits and respite planning. |
| Spiritual and existential | What gives meaning? Guilt, hope, faith, anger, unfinished relationships, preferred rituals? | Presence, respectful exploration and referral to the patient’s chosen spiritual adviser. |
| Family and caregiver | What does the family understand? Can they give medicines safely? Are they exhausted or at risk? | Teach-back, written plan, respite, caregiver support and bereavement follow-up. |
3.6 Excellent symptom assessment and treatment
- Ask rather than infer: patients may hide pain, breathlessness, nausea, incontinence or fear.
- Use a consistent scale and document severity, impact on function, precipitating factors, response and adverse effects.
- Look for reversible contributors such as urinary retention, constipation, medication toxicity, dehydration, hypoxia, infection, hypercalcaemia, hypoglycaemia, anaemia or delirium.
- Set a measurable goal (“sleep for four hours,” “walk to the toilet,” “breathlessness below 3/10”) and review it.
- Use non-drug and drug measures together; prescribe anticipatory medicines only with clear indications, dose instructions, storage advice and review.
- Reassess after an intervention and at each handover. A treatment that relieves one symptom may worsen another.
3.7 Respect for autonomy, informed consent and shared decisions
- Assess capacity for the specific decision: understanding, retaining, weighing and communicating a choice. Capacity may fluctuate with delirium, hypoxia, pain or medicines.
- Explain diagnosis, options, likely benefits, burdens, uncertainty and alternatives in understandable language. Check understanding with teach-back.
- Support a capacitated patient’s refusal, even when the team disagrees, while checking that the decision is informed and free of coercion.
- If capacity is absent, identify a legally appropriate surrogate and use the patient’s known values and previously expressed wishes; involve senior clinicians and ethics/legal resources where conflict persists.
- Document who was present, what was discussed, decisions, review triggers and the patient’s preferred decision-maker.
3.8 Beneficence, non-maleficence and proportionality
Beneficence means acting for the patient’s welfare; non-maleficence means avoiding preventable harm. Proportionality asks whether the expected benefit of an intervention justifies its burdens, cost, risk and effect on the patient’s goals. “More treatment” is not always “better care,” and comfort-focused care is still active care.
3.9 Justice, equity and human rights
- Offer care without discrimination based on diagnosis, HIV status, age, disability, sex, gender, religion, income, nationality, location or perceived social worth.
- Prioritise need and clinical urgency when resources are limited, not ability to pay or family influence.
- Advocate for essential medicines, trained staff, accessible transport and community services for rural and marginalised patients.
- Protect privacy, especially for HIV status, mental-health information, sexual health, family conflict and sensitive cultural issues.
3.10 Communication, truth-telling and realistic hope
- Ask what the patient already understands and how much detail they want.
- Give information in small sections, use a warning statement before bad news, pause for emotion and summarise a plan.
- Do not collude with a request to deceive a capacitated patient. Explore the family’s fear, assess the patient’s preference for information and negotiate a culturally safe family meeting.
- Never give false certainty. Pair honesty with a commitment: “We may not be able to reverse the illness, but we will treat your symptoms, listen to your priorities and support your family.”
3.11 Cultural and spiritual humility
Culture influences explanations of illness, disclosure, gender roles, food, touch, dying at home, use of traditional remedies, rituals and who speaks for the family. Ask rather than stereotype. Respect safe practices, identify harmful interactions or delays, and collaborate with traditional or religious leaders when the patient agrees.
3.12 Continuity, coordination and teamwork
- One clinician or service should own the plan even when many professionals contribute.
- Use a shared record, medicine reconciliation, named contact, escalation instructions and a scheduled review.
- Close the loop: the receiving service confirms acceptance; the referring team receives the outcome; the patient and family know whom to call.
- Include generalist providers, specialist palliative clinicians, nurses, doctors, pharmacists, social workers, psychologists, rehabilitation staff, chaplains, community health workers, volunteers and caregivers according to need.
3.13 Support for family, caregivers and bereaved people
Caregiver support includes teaching, practical help, respite, safety planning, emotional support, financial and social referrals and preparation for likely changes. Assess anticipatory grief before death, immediate support after death and ongoing complicated-grief risk. Children and dependants may need protection, school support and honest age-appropriate explanations.
3.14 Evidence, safety and accountability
- Use current national protocols, essential-medicines guidance and controlled-drug regulations; verify doses and renal/hepatic adjustments at the point of prescribing.
- Audit symptom response, adverse drug events, medicine stock-outs, referral completion, preferred place of care, emergency transfers and caregiver outcomes.
- Report safeguarding concerns, medication diversion, unsafe storage, coercion, neglect and discriminatory care.
4. Ethical principles and common dilemmas
| Principle | Clinical question | Example in practice |
|---|---|---|
| Autonomy | What does the patient understand and choose? | A capacitated patient chooses home care after risks, benefits and an emergency plan are explained. |
| Beneficence | What is likely to help this person’s goals? | Treating reversible sepsis while also relieving pain and anxiety. |
| Non-maleficence | Could this intervention cause more burden than benefit? | Avoiding repeated traumatic investigations that will not alter the plan. |
| Justice | Are access and decisions fair? | Offering opioid analgesia and referral support to a rural patient as well as an urban patient. |
| Confidentiality | Who may receive information? | Discussing HIV status only with the patient or authorised people, in private. |
| Proportionality | Is treatment intensity consistent with goals and expected benefit? | Reviewing burdensome monitoring when the agreed goal is comfort at home. |
5. Principles across the illness trajectory
| Phase | Typical needs | Principle-led actions |
|---|---|---|
| Diagnosis | Shock, fear, uncertainty, information needs | Clear explanation, symptom relief, support network, treatment goals and early palliative referral. |
| Living with illness | Variable symptoms, role changes, treatment effects | Self-management teaching, rehabilitation, medication review, family support and advance-care discussions. |
| Deterioration | Increasing dependence, crises, caregiver exhaustion | Review goals, intensify symptom control, anticipate emergencies, arrange equipment, respite and referral. |
| Last days or hours | Reduced intake, altered consciousness, secretions, family distress | Comfort-focused assessment, mouth/skin care, proportionate medicines, privacy, spiritual support and explanation of dying signs. |
| Bereavement | Grief, practical disruption, children’s needs | Condolence, death documentation, practical guidance, risk assessment and follow-up/referral. |
6. What is a model of palliative care?
Models are commonly classified by setting and by the relationship between generalist and specialist services. They are complementary rather than mutually exclusive. A district may use facility clinics for review, a hospital team for complex symptoms, outreach for remote facilities, community volunteers for follow-up and home visits, and hospice or referral units for advanced needs.
6.1 Generalist, specialist and shared-care models
| Model | Who provides it | Best use | Safety requirement |
|---|---|---|---|
| Generalist palliative care | Routine clinicians in primary care, wards, emergency units and chronic-disease clinics. | Common symptoms and needs within the team’s competence. | Know limits; seek specialist advice for refractory symptoms, complex ethics or rapid deterioration. |
| Specialist palliative care | Professionals with advanced palliative training in a consult team, unit, hospice or service. | Complex symptoms, difficult communication, psychosocial/spiritual complexity and care coordination. | Remain integrated with the primary disease team and document recommendations. |
| Shared care | Generalist team retains routine care while specialist team advises, reviews or co-manages. | Continuity across hospital, clinic, home and community. | Named lead clinician, shared plan, clear escalation and closed-loop referral. |
7. Facility and hospital models
7.1 Outpatient or ambulatory palliative-care clinic
Description: Patients attend a clinic or telehealth service for assessment, symptom review, counselling, medication adjustment, rehabilitation, advance-care planning and referral.
- Strengths: early access, relatively low resource use, large reach, monitoring without admission, reduced prolonged hospitalisation and opportunity to include caregivers.
- Limitations: transport costs, missed appointments, inability to manage unstable emergencies, weak access for very frail or remote patients.
- Safe workflow: triage on arrival, symptom and medicine review, assess caregiver capacity, give written escalation advice, confirm medicine supply and book the next review or home/outreach visit.
7.2 Inpatient consultation team
A multidisciplinary team reviews patients admitted under another service. It provides complex symptom advice, communication support, psychosocial and spiritual assessment, discharge planning and links to home or hospice care. It does not mean that the patient is “being abandoned”; disease-directed treatment continues when consistent with goals.
7.3 Dedicated inpatient palliative-care ward or unit
A dedicated unit provides a quieter environment, expert symptom management, family presence and coordinated discharge or end-of-life care. It is useful when symptoms cannot be safely controlled in a general ward, but requires trained staff, medicines, equipment, infection prevention, referral criteria and a plan to avoid unnecessary institutionalisation.
7.4 Acute palliative-care unit (APCU)
An APCU is a specialist hospital unit for patients in severe, complex or rapidly changing distress. It can provide rapid titration and monitoring, manage delirium, pain crises, vomiting, seizures or respiratory distress, and coordinate a return home or transfer to hospice when stable. It is not an intensive-care unit: admission should be guided by goals, reversibility, likely benefit and patient preference.
7.5 Hospital-based palliative team plus emergency department
- Screen emergency arrivals with serious illness for symptom crisis, unmet goals, caregiver distress and repeated unplanned visits.
- Stabilise immediately reversible threats using ABCDE; provide analgesia, antiemesis, oxygen when indicated and psychological support.
- Clarify existing care plans, resuscitation preferences and decision-maker without delaying life-saving treatment when wishes are unknown and emergency action is required.
- Call the palliative team early for refractory symptoms, conflict, discharge planning or a patient who wishes to remain at home.
8. Day-care models
8.1 Facility day care
Patients attend during the day for clinical review, medicines, rehabilitation, recreation, peer support, counselling and caregiver teaching, then return home. It can reduce isolation and overnight costs but may be exhausting for a weak patient and requires transport, staffing, meals, privacy and a plan for deterioration during attendance.
8.2 Community day care
A church hall, community centre or large home can host review, education, support groups and basic nursing. It improves local ownership, cultural fit and stigma reduction. Privacy, medicine security, infection control, weather, emergency response and documentation must be actively designed rather than assumed.
9. Outreach, mobile and remote-access models
9.1 Health-facility outreach
A specialist team travels from a hospital or hospice to district hospitals, Health Centre IVs/IIIs, churches or schools. Outreach provides mass review, mentorship, case finding and follow-up, reduces transport burden and builds local capacity. Limitations include infrequent visits, travel cost, weather, limited equipment and no immediate emergency response between visits. Each outreach visit should leave a named local contact, medicine plan and escalation route.
9.2 Roadside or stopover clinics
For very remote communities, a team may arrange a safe meeting point along a travel route. This can provide urgent refills and basic assessment at low patient cost, but privacy, security, weather, examination, emergency equipment and documentation are limited. Controlled medicines must never be left unsecured or transported outside authorised procedures.
9.3 Telehealth and telephone support
Telephone follow-up can triage symptoms, reinforce caregiver teaching, coordinate transport and reduce unnecessary travel. It cannot replace examination when there is suspected sepsis, airway compromise, severe bleeding, new neurological deficit, uncontrolled pain, delirium or safeguarding risk. Confirm identity, privacy, location, callback number and a local emergency plan.
10. Community-based palliative care
Community programmes use primary-care staff, community health workers, volunteers, local leaders, faith communities and trained caregivers. They identify people early, support adherence and symptom observation, provide basic nursing and psychosocial support, reduce stigma and link patients to medicines and referral services.
- Define volunteer scope: observation, communication, basic support and referral—not independent prescribing or unsafe procedures.
- Train volunteers in confidentiality, infection prevention, danger signs, safe positioning, mouth care, caregiver support and documentation.
- Provide supervision, transport support, a contact person, essential supplies and a process for reporting missed visits or deterioration.
- Engage traditional and religious leaders with patient consent while checking for unsafe remedies, coercion or delayed emergency care.
11. Home-based palliative care
Home care delivers planned clinical, nursing, psychosocial, spiritual and practical support in the patient’s environment. The Ugandan teaching reference highlights positioning, bathing, wound and mouth care, infection prevention, household help, health promotion and caregiver training.
| Home-care element | What must be assessed and taught |
|---|---|
| Environment | Privacy, sleeping space, ventilation, sanitation, electricity, water, transport, safety and distance to emergency care. |
| Caregiver capacity | Who is available, physical ability, literacy, respite, emotional state, safeguarding and willingness. |
| Clinical plan | Symptoms, medicines, allergies, equipment, wound and mouth care, nutrition, bowel plan, review date and escalation signs. |
| Medicine safety | Correct patient, medicine, dose, route and time; locked storage for controlled medicines; disposal and stock reconciliation. |
| Emergency pathway | Who to call, how to obtain transport, what to do while waiting, and when not to delay transfer. |
| Continuity | Written record, named clinician, contact number, counter-referral and follow-up after admission or discharge. |
Benefits: comfort, dignity, family participation, cultural and spiritual continuity, fewer hospital-acquired infections and potentially fewer avoidable admissions. Risks: caregiver burnout, medicine diversion, unsafe environment, delayed emergency response, inconsistent documentation and inequity for families without transport or support. Home care is not automatically safer; it is safe when the plan matches resources and risk.
12. Hospice models
Hospice is one model within palliative care, usually focused on people approaching the end of life and their families. It may be inpatient, home-based, outpatient or a combination. Hospice emphasises comfort, dignity, family presence, judicious technology, psychosocial and spiritual support, and bereavement care. Palliative care is broader: it can begin at diagnosis, occur alongside curative treatment and serve people who are not yet dying.
| Hospice strength | Clinical safeguard |
|---|---|
| Expert comfort and end-of-life care | Continue to assess reversible causes and respect the patient’s goals. |
| Family and volunteer support | Do not assume caregivers can manage without training, respite or transport. |
| Peaceful environment and rituals | Maintain privacy, infection prevention and consent for visitors or rituals. |
| Bereavement follow-up | Screen for complicated grief, safeguarding and practical needs. |
13. Choosing the right model: a clinical decision framework
- Clarify goals: disease control, rehabilitation, comfort, home time, family presence, spiritual or cultural priorities.
- Assess acuity: stable, unstable, deteriorating, actively dying or bereaved; identify immediately reversible emergencies.
- Assess complexity: symptom severity, refractory symptoms, polypharmacy, delirium, difficult communication, safeguarding and ethical conflict.
- Assess place and resources: patient preference, caregiver capacity, distance, transport, medicines, electricity, water, equipment and telephone access.
- Match service intensity: outpatient/generalist for stable needs; outreach or home care for access barriers; specialist clinic for complexity; inpatient/APCU/emergency for instability; hospice for end-of-life needs.
- Close the loop: named lead, written plan, medicine reconciliation, danger signs, contact numbers, review date and counter-referral.
14. Uganda-oriented service network
| Level | Expected contribution | Link to the next level |
|---|---|---|
| Household/community | Caregiver support, symptom observation, basic nursing, cultural and spiritual support, early referral. | Community health worker or nearest health facility; emergency transport plan. |
| Health Centre III/IV and primary clinic | Generalist symptom control, HIV/TB and chronic-care integration, psychosocial assessment, basic medicines, education and follow-up. | District or specialist outreach; urgent hospital referral when unstable. |
| District hospital | Inpatient and outpatient review, emergency stabilisation, trained palliative focal person/team, medicine access, discharge and home linkage. | Regional/national referral or hospice; counter-referral to community. |
| Regional/national referral hospital | Complex diagnostics and procedures, specialist consultation, APCU or hospital team, education, mentorship and research. | Return plan to district, home or hospice with clear ownership. |
| Hospice/NGO/faith and community partners | Home visits, specialist comfort care, caregiver support, spiritual and bereavement services, advocacy and outreach. | Clinical escalation to facility; feedback to the treating team. |
Uganda’s palliative-care development has included government and civil-society partnership, oral-liquid-morphine access and increasing district coverage, but workforce, financing, medicine supply, rural access and service integration still require strengthening. Use current Ministry of Health, PCAU and facility guidance rather than relying on an old slide or memorised policy detail.
15. Referral, handover and documentation checklist
- Patient identity, diagnosis, allergies, comorbidities, infection risks and functional status.
- Current symptoms, severity, examination, red flags, reversible causes considered and response to treatment.
- Current medicines, last doses, breakthrough use, adverse effects, controlled-drug quantity and storage plan.
- Goals of care, capacity assessment, consent, decision-maker, preferred place of care and resuscitation discussion where appropriate.
- Psychological, social, spiritual, cultural and safeguarding needs.
- Caregiver name, training completed, ability to cope, respite plan and telephone access.
- Receiving service, reason for referral, urgency, transport plan, named clinician, contact numbers, appointment and counter-referral expectation.
- Teach-back: ask the patient/caregiver to explain the plan and danger signs in their own words.
16. Emergency-medicine interface
Palliative principles do not remove emergency obligations. In a patient with serious illness, first stabilise life-threatening problems while clarifying goals as soon as possible.
| Presentation | Immediate priorities | Model/escalation |
|---|---|---|
| Severe breathlessness, hypoxia or airway obstruction | ABCDE, position, oxygen if hypoxaemic, treat reversible cause, calm communication and symptom relief. | Emergency/resuscitation area plus early specialist palliative review; plan onward care. |
| Major haemorrhage | Call for help, protect patient/family, pressure/packing where appropriate, treat shock if consistent with goals, explain what is happening. | Emergency team, blood/surgical review when appropriate, comfort-focused plan if dying. |
| New spinal pain/weakness or cauda-equina symptoms | Neurological assessment, analgesia, urgent imaging/referral and safe handling. | Oncology/neurosurgical/radiotherapy and palliative coordination. |
| Delirium, seizure or reduced consciousness | Airway, glucose, oxygenation, infection/medication review, seizure management and safety. | Emergency assessment; specialist review for refractory symptoms and family support. |
| Uncontrolled pain/vomiting or caregiver crisis | Assess severity and reversible causes, medicine reconciliation, hydration/comfort decision, safeguarding. | Observation/admission, specialist advice or urgent home/hospice plan according to risk. |
17. Quality indicators for a palliative-care model
- Percentage of patients screened and assessed for symptoms and caregiver needs.
- Time from referral to first contact and percentage of referrals completed.
- Documented goals, preferred place of care, decision-maker and emergency plan.
- Availability and safe use of essential medicines; stock-out days and medication incidents.
- Symptom response at review, unplanned emergency visits, avoidable admissions and readmissions.
- Caregiver training, respite access, patient-reported experience and equitable rural/urban reach.
- Handover completeness, counter-referral rate, home deaths consistent with preference and bereavement follow-up.
- Staff training, supervision, burnout monitoring and incident reporting.
18. Implementation barriers and practical solutions
| Barrier | Practical response |
|---|---|
| “Palliative care means giving up” | Introduce it early, explain concurrent treatment, use supportive-care language and share patient stories focused on living. |
| Few trained clinicians | Integrate core skills into all cadres, train focal persons, use mentorship, outreach and telephone specialist support. |
| Medicine stock-outs or fear of opioids | Use essential-medicine forecasting, secure storage, prescribing training, stock monitoring and legal compliance. |
| Long distance and transport cost | Community health workers, outreach, home visits, decentralised refill points and planned referral transport. |
| Fragmented records | Standard symptom, goal, medicine, referral and counter-referral forms; named service owner. |
| Family conflict or nondisclosure | Private patient assessment, supported family meeting, capacity/consent documentation and ethics escalation. |
| Caregiver exhaustion | Teach-back, respite, volunteer support, practical assistance, crisis telephone contact and bereavement care. |
19. Worked clinical cases
Case 1: Advanced cancer and a home preference
A 62-year-old with metastatic cancer has moderate pain controlled at home but repeated night-time panic and an exhausted daughter. The principle-led response is to assess pain, breathlessness, delirium and medicines; explore the patient’s goal of remaining at home; teach the daughter symptom observation and safe medicine administration; arrange a home/outreach visit, respite and a 24-hour escalation number; and document when hospital transfer is required. A specialist team is added because psychosocial and caregiver complexity exceeds a simple refill.
Case 2: Family asks for nondisclosure
A capacitated patient asks, “Is this cancer getting worse?” Relatives ask staff not to tell him. Ask what he wants to know, acknowledge family fears, explain that information helps him make decisions and arrange a private, supported conversation. Give information in manageable steps, allow silence, check understanding and agree on family involvement. Document consent and preferences. Do not use a model—home, hospital or hospice—to justify removing autonomy.
Case 3: Remote child with repeated crises
A child with a life-limiting neurological condition lives far from the district hospital and has recurrent choking and chest infections. A community/home model can teach positioning, feeding safety, mouth care and danger signs; supply a written plan; link a local health worker to the district team; and schedule outreach. Any current respiratory distress, cyanosis, altered consciousness or suspected aspiration requires urgent facility assessment—not waiting for the next outreach visit.
20. Exam and practice summary
Remember the principle set: person-centred care; affirm life and regard dying as normal; neither hasten nor postpone death; early integration; total-pain and holistic assessment; family as unit of care; autonomy and consent; beneficence, non-maleficence and justice; realistic hope; cultural and spiritual humility; continuity and teamwork; caregiver and bereavement support; evidence, safety and accountability.
Remember the model set: outpatient, inpatient consultation, dedicated ward, acute palliative-care unit, facility day care, community day care, outreach/mobile/roadside, community-based, home-based, hospice, telehealth and shared care. Models should be combined according to need and linked by referral and counter-referral.
Quick self-test
- Why is palliative care not synonymous with hospice?
- Give four elements that make a referral “closed loop.”
- How should a team respond when family members request nondisclosure?
- Name the four widely taught ethical principles and one practical example of each.
- List three benefits and three safety risks of home-based care.
- When should a palliative patient be transferred urgently rather than waiting for outreach?
- Why must a community volunteer have a defined scope and supervision?
- What is the difference between generalist, specialist and shared care?
Answers and explanations
- Hospice is one end-of-life-oriented model; palliative care can begin at diagnosis, accompany disease-directed treatment and occur in any setting.
- Receiving service accepts the referral; a named clinician is responsible; the patient has transport/contact instructions; and the referring team receives an outcome or counter-referral.
- Explore the family’s concerns, assess the patient’s own information preference and capacity, communicate honestly and compassionately, involve the family with consent and document the plan.
- Autonomy (respect informed choices), beneficence (promote welfare), non-maleficence (avoid preventable harm) and justice (fair access and allocation). Confidentiality and proportionality are essential related duties.
- Benefits include comfort, dignity, family participation and cultural continuity. Risks include caregiver burnout, unsafe medicine storage, delayed emergency response, poor documentation and inequity.
- For airway/breathing compromise, major bleeding, shock, sepsis, new neurological deficit, seizure, severe delirium, uncontrolled symptoms or an unsafe home; stabilise and escalate immediately.
- Volunteers can extend reach but should not prescribe or perform unsafe procedures. Scope, training, supervision, confidentiality and escalation protect patients and volunteers.
- Generalist care is routine care by the primary team; specialist care is advanced palliative input for complexity; shared care combines both with a clear lead and communication plan.
Further study and source links
- Nurses Revision Uganda: Principles of Palliative Care — supplied teaching reference, including ethical principles, holistic care and Uganda-oriented models.
- Slideshare: Comprehensive Guide to Palliative-Care Models — supplied presentation covering outpatient, inpatient, day care, APCU, community, home and hospice models.
- Uganda Ministry of Health/APCA patient and family guide — dignity, rights, ethical care, symptom relief and coordinated services.
- WHO: Palliative care fact sheet — global definition and public-health principles.
- Palliative Care Association of Uganda — Uganda service integration, workforce, medicine and community priorities.
Take-home message: Principles tell us what compassionate, ethical and safe palliative care must feel like; models tell us how to organise it. The best model is the one that matches the patient’s goals and clinical complexity, reaches the family where they are, has medicines and trained people, and remains connected to emergency and specialist help.
