Definitions and Illness Trajectories
Defining Palliative and End-of-Life Care
| Concept | Definition |
|---|---|
| Palliative Care | Active, holistic, person and family-centered care for individuals of all ages with a life-limiting illness. The primary goal is to optimize quality of life by anticipating, preventing, and treating suffering. It can be provided for years alongside active treatment. |
| End-of-Life (EoL) Care | An important component of palliative care for a person who is likely to die within the next 12 months. The focus shifts from curative treatment to comfort, symptom control, and ensuring a dignified death. |
Illness Trajectories
Understanding the typical progression of different life-limiting illnesses helps in planning care and anticipating needs.
- Rapid Decline (e.g., Cancer): A period of relatively high function followed by a rapid, predictable decline in the final weeks or months.
- Intermittent Decline (e.g., Organ Failure - COPD, Heart Failure): A gradual decline marked by intermittent acute exacerbations, from which the patient may not fully recover to their previous baseline.
- Gradual Decline (e.g., Frailty, Dementia): A slow, progressive dwindling of physical and cognitive function over several years.
The Paramedic's Role in Palliative and EoL Care
Why Paramedics are Called
Paramedics are frequently called to palliative patients experiencing a crisis. The most common reasons include:
- Uncontrolled Pain
- Dyspnoea (Shortness of Breath)
- Anxiety and Delirium
- General Weakness or Altered Consciousness
- At the time of death (for verification)
Barriers and Enablers in Practice
Paramedics face unique challenges in this context. The Collier et al. (2023) study highlights that from the patient and family perspective, paramedics with palliative care training are seen as a vital extension of the community care team.
| Barriers | Enablers (What Patients & Families Value) | ||
|---|---|---|---|
| Lack of specific palliative care education, unclear care plans, family disagreements, and ethical/legal uncertainty. | Timely Response: Especially out-of-hours when other services are unavailable. | Person-Centered Care: Taking the time to listen, communicate with empathy, and respect patient wishes. | Safety and Security: Providing a psychological safety net for families, knowing expert help is available. |
Symptom Assessment and Management
Core Principles of Assessment
The goal is to relieve suffering. This requires a holistic assessment of the patient's "total pain," which includes physical, psychological, social, and spiritual dimensions. Tools like the Edmonton Symptom Assessment System (ESAS-r) can help quantify multiple symptoms.
Managing Common Symptoms
| Symptom | Assessment Considerations | Common Paramedic Interventions |
|---|---|---|
| Pain | Pain can be nociceptive, neuropathic, or psychosocial. A thorough pain assessment (e.g., SOCRATES) is critical. | Opioids (e.g., Morphine) are the mainstay. Non-pharmacological measures like positioning can also help. |
| Dyspnoea | The subjective experience of breathlessness. Assess for reversible causes (e.g., effusions, infection). | Opioids are first-line therapy. Non-pharmacological measures include cool air (fan), positioning, and reassurance. |
| Anxiety | Commonly related to fear of death, uncontrolled symptoms, or existential distress. | Short-acting benzodiazepines (e.g., Midazolam). Reassurance and calm communication are vital. |
| Delirium | An acute, fluctuating change in mental status. Use a tool like the 4AT to screen. It is often reversible. | Low-dose antipsychotics (e.g., Haloperidol, Droperidol) or benzodiazepines may be used for agitation. |
| Nausea & Vomiting | Multiple potential causes (medication side effects, constipation, metabolic changes). | Antiemetics such as Ondansetron, Metoclopramide, or Droperidol. |
Route of Administration: When patients can no longer take oral medications, the subcutaneous (SC) route is preferred for bolus doses or continuous infusions via a syringe driver.
Legal and Ethical Frameworks
Key Principles and Documents
- Doctrine of Double Effect: A core principle that legally and ethically protects clinicians. It states that an action with a good intention (e.g., relieving pain with morphine) is permissible even if it has a foreseeable but unintended negative effect (e.g., hastening death through respiratory depression). The intent must be to relieve suffering, not to end life.
- Advance Care Directives (ACDs): A legal document made by a person with capacity that outlines their preferences for future healthcare, including refusal of specific life-sustaining treatments. A valid ACD must be followed.
- Substitute Decision-Makers: When a patient loses capacity and has not appointed an Enduring Guardian, decisions are made by a "person responsible" according to a legal hierarchy (e.g., spouse, carer, relative).
- Voluntary Assisted Dying (VAD): Now legal in all Australian states. It is a separate process with strict eligibility criteria and is distinct from palliative care and the doctrine of double effect. Paramedics must be aware of their role as defined by local legislation.
Palliative Care for Special Populations
Paediatric Palliative Care
Providing palliative care to children is emotionally challenging and requires a family-centered approach. Families often prefer care at home to maintain normalcy and family connection. Paramedics may be called for symptom crises, planned transfers, or at the time of death.
Family Experiences: The Winger et al. (2020) review found that families need organized, skilled support, respite care, support for siblings, and financial assistance. The ability to have care provided at home strengthens family life.
Older People and Dementia
Most deaths in older people occur in the context of chronic disease and frailty. Key challenges include:
- Prognostication: It is difficult to identify a well-defined terminal phase, especially in dementia.
- Communication: Challenges in assessing symptoms, particularly pain, in cognitively impaired patients.
- Under-treatment: The palliative care needs of older people, especially those in residential aged care, are often under-assessed and under-treated.
Aboriginal and Torres Strait Islander Peoples
Providing culturally safe palliative care is essential.
- Communication: Use plain language. Be aware that direct conversations about "death" may be culturally inappropriate; use terms like "finishing up." Ask who the patient wishes health matters to be discussed with, as decision-making is often communal.
- Kinship and Country: Recognize the importance of extended family and the deep connection to Country. A person may wish to pass away on their traditional lands.
- Sorry Business: Understand that this is a period of mourning with specific cultural practices that must be respected.