Palliative care emergencies

Key messages

Definition and prevalence

A palliative care emergency is a sudden and potentially life-threatening change in a patient’s condition that, without urgent intervention, can severely impact both health and quality of life. [1,2] These emergencies typically arise due to complications from advanced illness and are more common in patients with progressing cancer or other life-limiting diseases. Managing these events should focus on symptom control and aligning care with the patient’s goals. [2,3]

The most frequently observed palliative care emergencies include airway obstruction, malignant bowel obstruction (MBO), major bleeding, spinal cord compression, and superior vena cava (SVC) obstruction. [1,2] Severe pain is also covered in more detail in a separate clinical evidence summary.

Airway obstruction refers to the narrowing of the trachea and bronchi, which can result from both malignant and benign causes, leading to respiratory distress and potential failure if untreated. [1,2]

Malignant bowel obstruction occurs as a late-stage complication in around 50% of patients with advanced ovarian cancer and 15% of those with upper digestive and pancreaticobiliary cancers. It can cause severe pain, nausea, vomiting, dehydration, and malnutrition. [3]

Major bleeding can result from advanced cancer, fungating tumours, or haemoptysis and is classified using the World Health Organization's bleeding score. [1]

Spinal cord compression occurs primarily due to vertebral metastases or, less frequently, from a primary tumour, potentially leading to significant neurological impairment. Between 5-10% of patients with advanced cancer experience spinal cord compression, particularly those with lung, breast, prostate, or kidney cancer. [3]

Superior vena cava obstruction results from tumour compression of the SVC, preventing blood return to the heart from the upper body. This can cause severe swelling of the head, neck, and upper extremities, with the potential for airway obstruction and cerebral oedema. [2] While these emergencies are frequently seen in patients with advanced cancer, other chronic illnesses can also precipitate similar crises. [1] The incidence of SVC obstruction, for example, ranges from 1 in 650 to 3100 cases. [2] These emergencies typically occur in the later stages of illness and often necessitate hospital-based management to maintain patient comfort. [3]

Assessment

Assessing palliative care emergencies requires careful consideration of the patient’s condition, prognosis, and goals of care. These emergencies pose unique challenges, as interventions must address the immediate life-threatening condition while aligning with the patient’s wishes for comfort and quality of life. [1] A combination of clinical evaluation, imaging, and interdisciplinary consultation guides decision-making. Paramedics or emergency services may encounter these emergencies without the necessary diagnostic tools for full assessment. [4]

Airway obstruction: Clinical assessment begins with identifying signs of respiratory distress, such as stridor, wheezing, and cyanosis. [1] Chest X-rays or CT scans are useful for detecting obstructions caused by tumours compressing the airway. [3] In some cases, bronchoscopy may be required to directly visualise the obstruction and guide interventions like stenting or tumour debulking. [2]

Malignant bowel obstruction: MBO is assessed through patient history and symptoms such as abdominal pain, vomiting, and distension. [1] Physical examinations may reveal distended bowel sounds, or even an absence of sounds, while CT imaging helps locate and assess the severity and extent of the obstruction. [3] Decision-making regarding surgical intervention or conservative management depends on the patient’s overall condition, quality of life and goals of care. [2]

Major bleeding: The severity of major bleeding is assessed using the World Health Organization bleeding score, which categorises bleeding based on haemodynamic stability and blood loss. [1] Laboratory results, including haemoglobin levels, along with imaging such as CT angiography, are used to guide treatment. [3] In some cases, discussions around comfort-focused care may be necessary when bleeding cannot be controlled. [2]

Spinal cord compression: Spinal cord compression presents with symptoms such as back pain, weakness, and sensory loss. A thorough neurological examination is required to assess motor and sensory function. [3] MRI is the gold standard for diagnosing spinal cord compression, providing detailed visualisation of the tumour's impact on the spinal cord. [2] Early identification is important to prevent long-term neurological damage. [1]

Superior vena cava obstruction: SVC obstruction is often caused by tumours and identified by physical symptoms such as facial swelling, cyanosis, and distended neck veins. [1] A CT scan with contrast is typically used to confirm the diagnosis and assess the extent of the obstruction. [3] Depending on the severity of the obstruction and the patient's overall prognosis, decisions about treatment may involve either aggressive interventions or comfort-focused care. [2]

The assessment process for these emergencies is multidisciplinary, involving palliative care specialists, oncologists, and radiologists. Timely and thorough evaluations are essential to ensuring that care decisions are aligned with the patient’s goals and provide relief from distressing symptoms. [1,2]

Treatment

Treating palliative care emergencies involves a combination of pharmacological and non-pharmacological interventions, guided by the patient's prognosis, clinical condition, and personal goals of care. The balance between symptom management and potential reversibility must be carefully considered, particularly for patients prioritising comfort over aggressive intervention.

Airway obstruction: Pharmacological management includes the use of opioids to relieve breathlessness and anxiolytics to manage the associated anxiety and agitation. [3] In cases where airway obstruction is reversible, stenting or bronchoscopy is often effective in re-establishing airway patency, which can also support weaning patients from ventilatory support. [5] Non-pharmacological approaches include PPV for acute respiratory failure and positioning to ease breathing in milder cases. [5] For patients where reversibility is not feasible, aggressive symptom control with sedatives may be used to manage distressing symptoms.

Malignant bowel obstruction: Pharmacological treatments for MBO typically involve opioids for pain relief, although their effectiveness in this context is debated. Anticholinergics, such as hyoscine butylbromide, are commonly used to reduce smooth muscle spasms and abdominal pain, while octreotide or olanzapine may be more effective for managing nausea and vomiting. [6] For partial obstructions, prokinetic agents like metoclopramide and domperidone can aid bowel motility but are contraindicated in complete obstructions due to the risk of bowel perforation. [6] Non-pharmacological interventions include nasogastric decompression for short-term relief and the use of SEMSs for single-level obstructions, with both uncovered and covered stents providing comparable outcomes, though uncovered stents may be more effective in cases of extrinsic tumour compression. [7] Endoscopic ultrasound-guided gastroenterostomy (EUS-G) offers a minimally invasive alternative to surgery, creating a stable gastrojejunal bypass with a good safety profile. [7]

Major bleeding: In cases of major bleeding, pharmacological interventions focus on symptom control, with sedatives such as midazolam used to alleviate anxiety and opioids for pain management. [1] Non-pharmacological interventions include providing emotional support and ensuring a calm, dignified environment for both the patient and carers during terminal events. [3] Positioning to manage bleeding and applying compressive dressings may be used in specific situations, but the overall goal is to prioritise comfort over invasive interventions. [1] In many cases, aggressive management of bleeding is not aligned with the patient’s end-of-life wishes, and providing a peaceful setting may be the most appropriate response.

Spinal cord compression: High-dose corticosteroids, such as dexamethasone, are the cornerstone of pharmacological treatment for reducing inflammation and oedema in spinal cord compression. [8] Radiotherapy may be administered to shrink the tumour and alleviate pressure on the spinal cord, particularly in patients unsuitable for surgery. Minimally invasive spine surgery (MIS) is increasingly used to decompress the spinal cord, offering a less invasive alternative to traditional open surgery with fewer complications and shorter recovery times. [8] Non-pharmacological interventions include physiotherapy to maintain mobility and reduce pain, though these are typically adjunctive to more definitive treatments such as surgery or radiotherapy. [1]

Superior vena cava obstruction: Pharmacological management for SVC obstruction centres around relieving symptoms, with opioids and anxiolytics used to manage dyspnoea and anxiety. [3] Stenting is the primary non-pharmacological intervention to relieve the obstruction and restore venous flow, particularly in patients with significant symptoms. Radiotherapy or chemotherapy may be utilised to reduce tumour size, depending on the underlying malignancy. [2] For patients who do not wish to undergo aggressive treatments, positioning techniques to reduce venous congestion and symptom management with sedatives and analgesics are favoured. [3]

Equity and access

Equitable access to care during palliative care emergencies is often shaped by social and structural determinants, leading to significant disparities in how different populations experience and manage emergencies such as airway obstruction, bowel obstruction, and spinal cord compression. These inequities disproportionately affect underserved populations, including rural and remote communities, Indigenous peoples, culturally and linguistically diverse (CALD) populations, LGBTQI individuals, people in prison, and those with intellectual disabilities.

Geographic isolation limits access to specialist palliative care services in rural and remote areas, making it difficult for patients to receive timely interventions during emergencies. For example, patients experiencing malignant bowel obstruction or spinal cord compression may face delays in accessing surgery or radiotherapy due to the distance from tertiary care centres. [9] Telemedicine has proven valuable in offering remote consultations and symptom management, but the ability to perform emergency procedures remains limited. [10] Transport logistics and workforce shortages further complicate timely care in these settings, often resulting in a heavier reliance on community-based palliative care teams who may not have access to the equipment needed for interventions like stenting or decompression. [9]

Aboriginal and Torres Strait Islander peoples frequently experience barriers to accessing culturally appropriate care during palliative care emergencies. Traditional healing practices and holistic approaches to health are often overlooked in mainstream care settings, limiting Indigenous patients' engagement with services. [11] For instance, airway obstruction may require invasive procedures that conflict with cultural beliefs about bodily integrity, leading some patients to forgo these interventions in favour of symptom management with natural remedies or palliative sedation. [12] Ensuring culturally safe care, including the integration of traditional healing practices, can improve engagement and outcomes for Indigenous patients during emergencies.

Language barriers and differing cultural understandings of illness and death can hinder timely and appropriate care for CALD populations during palliative care emergencies. [13] Miscommunication or mistrust between healthcare providers and patients may delay decision-making, particularly in high-stakes emergencies such as major bleeding or SVC obstruction. Interpreters and culturally sensitive healthcare practices are essential to ensuring that CALD patients understand the nature of their emergency and the available treatment options. However, access to these services is not uniformly available, particularly in rural and regional settings, exacerbating inequities. [13]

LGBTQI individuals often face discrimination or lack of inclusion within healthcare systems, which can result in delayed or suboptimal care during palliative emergencies. A lack of understanding about the specific needs of LGBTQI patients may lead to discomfort in discussing sensitive issues, such as advance care planning, or reluctance to seek care for emergencies such as malignant bowel obstruction or airway obstruction. [14] Ensuring that palliative care teams are trained in LGBTQI inclusivity is critical to providing equitable care and reducing healthcare avoidance during emergencies.

Palliative care emergencies in prisons are often managed in an environment with limited access to specialist care and resources, which can exacerbate patient suffering. For incarcerated individuals, major emergencies such as spinal cord compression or airway obstruction may not be addressed promptly due to systemic issues such as understaffing and restricted access to hospital facilities. [15] The stigma associated with prisoners often compounds these challenges, resulting in poorer outcomes for those who experience life-threatening emergencies in custody. Expanding access to in-prison palliative care services, including partnerships with external healthcare providers, is necessary to improve emergency care for this population. [16]

Individuals with intellectual disabilities face unique barriers during palliative care emergencies, including difficulties in communicating symptoms and engaging in decision-making. [17] This can delay the identification and treatment of emergencies like bowel obstructions or SVC obstruction. Tailored communication strategies and specialised support from healthcare providers are critical to ensuring that these patients receive timely and appropriate care. [17] Additionally, caregivers and family members often play a significant role in managing emergencies, and ensuring they are supported is important to equitable care access.

Care context

The management of palliative care emergencies is influenced by the care setting, with each environment requiring specific approaches that align with patient goals and available resources.

In residential aged care homes, the management of palliative care emergencies is often shaped by the limitations in immediate access to medical interventions and the complexities of comorbidities in older adults. Non-invasive, comfort-focused care, such as pharmacological symptom relief with opioids, is typically prioritised. [1] For emergencies like airway obstruction or spinal cord compression, transferring patients to a hospital may not always be feasible, necessitating on-site management. [2] Staff training in early recognition of emergencies is vital to ensuring rapid response and symptom relief. [4]

In home care settings, patients often prioritise staying out of the hospital, making non-invasive interventions such as positioning and environmental adaptations key to managing emergencies. [3] Pharmacological treatments, including opioids and anticholinergics, are important for symptom control, but the involvement of mobile palliative care teams is essential to provide specialised support. [6] Family caregivers play an integral role in managing emergencies at home, and timely access to emergency services trained in palliative care can help avoid unnecessary hospitalisations. [4]

For people living with dementia, palliative care emergencies are complicated by cognitive impairments that limit symptom communication and complicate decision-making. [2] Invasive interventions are often less appropriate, with a greater focus on non-invasive symptom management to maintain comfort. [1] Family members or legal representatives frequently play a central role in determining care goals, with palliative teams on-site offering essential support to ensure comfort and dignity. [4]

Palliative care emergencies are also common in patients with non-cancer conditions such as chronic obstructive pulmonary disease (COPD) or heart failure, though these patients often have a lower tolerance for aggressive interventions. [3] For example, patients with airway obstruction due to COPD may not be suitable candidates for procedures like stenting, necessitating a focus on symptom management with opioids and sedatives. [2] The patient’s disease trajectory and care preferences heavily influence decisions regarding invasive interventions. [1]

Implications for families and carers

Families and carers often play a central role in the management of palliative care emergencies, particularly in home or care home settings. The emotional and practical demands can be considerable, and they may be required to make difficult decisions, particularly when patients are unable to communicate their wishes.

Palliative care emergencies, such as airway obstruction or spinal cord compression, can cause distress for both patients and carers. Carers may experience uncertainty or feelings of helplessness, particularly when immediate decisions are required. The involvement of healthcare teams to provide practical guidance and emotional support may reduce the strain on families, helping them to navigate these emergencies. [1] While palliative care teams may offer valuable reassurance, it is also important to ensure that carers are supported in their emotional needs, especially during terminal events like major bleeding. [3]

In many situations, carers or family members act as surrogate decision-makers, particularly when patients are cognitively impaired or unable to express their wishes. Clear and compassionate communication from healthcare providers is essential in helping families understand their options and make informed decisions. For example, decisions between aggressive interventions, such as airway stenting, and comfort-focused care may involve weighing risks and benefits carefully. [2] Carers may feel overwhelmed by these decisions, and guidance from palliative care teams may help ease this burden.

The physical and psychological burden on carers during palliative care emergencies can be substantial. In home settings, carers often manage symptoms, administer medications, and respond to crises like malignant bowel obstruction, which can increase stress levels. [6] The availability of mobile palliative care teams may help reduce the pressure on carers, providing needed assistance and respite during critical moments. [4]

The experience of managing palliative care emergencies may have lasting effects on carers, particularly when they have witnessed distressing symptoms or challenging situations. Feelings of guilt or self-doubt may arise, especially if decisions about treatment were complex or difficult. [1] Bereavement support and counselling services may help carers process these experiences, assisting them in coping with the emotional aftermath of caregiving at the end of life. [2]

Healthcare providers should acknowledge the essential role that families and carers play in managing palliative care emergencies. Offering them clear communication, emotional support, and access to resources may help alleviate the burden they face, allowing them to provide better support for the patient while also maintaining their own well-being.