Suffering

Definition and prevalence

In palliative care, suffering is a multidimensional experience characterised by overlapping domains of spiritual distress, existential suffering, hopelessness, and depression. [1] Clinical practice often merges spiritual and existential suffering due to their shared focus on loss of meaning, feelings of disconnection, and identity challenges when confronting mortality. Spiritual distress frequently arises from disruptions in deeply held beliefs, leading to isolation from oneself, others, or a transcendent presence. [1]

Hopelessness is distinguished by emotional resignation and perceived lack of agency, often leading to pessimism regarding future prospects. Depression, meanwhile, is marked by prolonged sadness with functional impairments, further deepening patient distress and lowering quality of life. [1,2]

Recognising suffering as a holistic and interwoven experience highlights the subjective nature of these domains, aligning with the flexible and inclusive approach required in end-of-life care. [1,3,4]

Assessment

Clinicians may often fear raising issues such as suffering, which are not ethically justifiable through assessment or screening alone, without having some strategies and therapeutic interventions available. The following paragraphs provide a summary of evidence-based assessment approaches and interventions; many of which are possible to initiate by a caring and thoughtful generalist clinician in the first instance, with the possibility of seeking further specialist support for people suffering severe and persistent distress.

Assessing existential suffering in palliative care is inherently complex due to its subjective nature and the lack of standardised tools. [4,5] Healthcare providers typically rely on qualitative methods, such as patient narratives and in-depth interviews, to capture the existential dimensions of a patient's suffering. [4] These assessments focus on themes like the patient's sense of meaning and purpose, feelings of isolation and their coping mechanisms. [4,6]

One commonly used qualitative tool is the Schedule for Meaning in Life Evaluation (SMiLE), which assesses patients’ sources of meaning and the extent to which these sources are fulfilled. [7,8] Another tool, the Existential Distress Scale (EDS), is used to measure existential concerns such as fear of death, meaninglessness and feelings of isolation. [9]

For spiritual distress, structured tools such as the Spiritual Well-Being Scale (SWBS) and the modified seven-item spiritual distress questionnaire are commonly used. [5,7] The SWBS assesses two dimensions: religious well-being and existential well-being, helping to identify spiritual distress by evaluating the patient's relationship with God and their sense of life purpose and satisfaction. [3,10] The spiritual distress questionnaire developed by Nash (1990) and used in various studies, assesses domains such as hope versus despair, wholeness versus brokenness, and meaning versus meaninglessness. [5]

Additionally, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) scale is widely used to assess spiritual well-being in patients with chronic illnesses, including those in palliative care. [8,11] This scale evaluates aspects of spiritual well-being that are relevant to health-related quality of life, focusing on the sense of meaning, peace and the role of faith in illness. [5,7]

A significant challenge in assessing both existential and spiritual suffering lies in the variability of how patients express their distress and the subjective nature of these experiences. [4,8] There is often a lack of training among healthcare providers in recognising and addressing these non-physical dimensions of suffering, which underscores the need for better conceptual frameworks and validated assessment tools. [3-5]

Non-pharmacological treatment

Non-pharmacological treatments in palliative care address both psychosocial and spiritual aspects of suffering, offering a supportive approach to alleviate patient distress. Psychosocial therapies, such as dignity therapy and life review, can be beneficial in helping patients reflect on personal achievements, relationships, and values, which may foster a sense of purpose and legacy. [12] Cognitive-behavioural therapy (CBT) is also considered effective in managing existential distress, assisting patients in developing coping strategies for anxiety and fears surrounding mortality. [1]

Spiritual support may also play a meaningful role, allowing patients to engage with faith-based practices and figures who resonate with their emotional and spiritual needs. This support includes chaplaincy services, religious counselling, and personal rituals that can help affirm patients’ belief systems. [1,13] Reconnecting with religious or spiritual mentors, as well as community support, can offer a comforting sense of continuity through familiar practices. [6,14]

Complementary practices, such as meditation, mindfulness, and yoga, have shown promise in helping patients manage anxiety and maintain a sense of peace and presence. [15] An interdisciplinary approach involving spiritual care providers, psychologists, and social workers may support patients’ well-being and quality of life in a holistic manner. [3,4]

Pharmacological treatment

Pharmacological treatments in palliative care aim to alleviate symptoms such as anxiety and depression, which may otherwise intensify existential suffering and spiritual distress. [1] Current best practices prioritise the use of SSRIs and SNRIs to support mood stabilisation and manage anxiety, with benzodiazepines typically reserved for short-term situations due to potential dependency risks. [13,14] Pain management remains central to relieving physical discomfort, as unmanaged pain can further compound existential and spiritual challenges. Opioids and other analgesics are commonly employed to control pain, helping to reduce its contribution to overall suffering. [3] Psychostimulants, such as methylphenidate, may be used selectively to counter opioid-induced sedation, providing additional support for cognitive and emotional stability. [6]

In some cases, pharmacological treatments intersect with spiritual considerations, particularly when patients feel that certain medications may impact their spiritual beliefs or identity. For some individuals, these perceptions create added layers of existential and spiritual dilemmas, where the treatment approach requires sensitivity to both physical relief and personal values. [16]

Voluntary Assisted Dying (VAD)

As part of existential distress and often as a desire to maintain control, enquiries about options to shorten suffering and to end life earlier than the natural disease are common. VAD is one response to this distress. VAD is a whole-of-society and whole-of-care issue that addresses complex ethical, legal, and personal considerations beyond the scope of traditional palliative care. In Australia, all state jurisdictions provide legal access to VAD, but it is typically separate from palliative care practice, with legislation in all states with clear regulatory frameworks to guide access to VAD. These frameworks ensure VAD is approached with strict eligibility criteria that often include a combination of physical, psychological, and situational assessments. For example, patients seeking VAD must generally be experiencing intolerable suffering from a terminal illness, with eligibility determined by specific estimated prognosis and patient determined suffering. In most jurisdictions clinicians are explicitly prohibited from raising the option of VAD. The availability of VAD in Australia is closely regulated, with each jurisdiction's law designed to reflect a careful balance between respecting patient autonomy and protecting vulnerable populations. Spiritual beliefs and cultural values may further shape individual attitudes toward VAD, sometimes intensifying existential distress when VAD appears incompatible with personal beliefs.

Within this context, palliative care services in Australia remain focused on providing comprehensive support through symptom management, psychosocial care, and spiritual guidance to alleviate suffering and maintain quality of life. Palliative care teams, including psychologists and spiritual care providers, play an essential role in helping patients explore their experiences and articulate their needs within a framework focused on holistic support. This approach respects the palliative care ethos, where the goal is to manage suffering and improve well-being. Consequently, palliative care remains centred on quality, compassionate care, prioritising comfort, dignity, and the alleviation of suffering across all dimensions of the patient experience.

Equity and access

Culturally and linguistically diverse (CALD) communities may encounter barriers in palliative care, where language differences and cultural values around suffering, family involvement, and decision-making can contribute to existential and spiritual distress, particularly when care practices appear misaligned with cultural expectations. [17,18] Accessible communication, including interpreter services, and culturally informed practices, such as family-inclusive decision-making, may help CALD patients feel better understood and supported. Training healthcare providers in cultural competence is likely valuable in providing palliative care that aligns more closely with diverse values, potentially alleviating feelings of isolation. [19]

Aboriginal and Torres Strait Islander peoples may have distinct spiritual and cultural needs that should be explored and respected and integrated into palliative care plans to address their unique experiences of suffering. [20,21] Collaborating with Indigenous communities and leaders ensures that care is holistic and honours their spiritual and cultural values, thereby mitigating existential distress. [20,21]

Similarly, LGBTQI+ individuals often face stigma and discrimination, which can intensify their spiritual distress and existential suffering. [22] Creating an inclusive environment and training healthcare providers to recognise and respect diverse sexual orientations and gender identities can help reduce these stressors and improve the overall care experience. [22]

People in prisons do encounter significant barriers to receiving palliative care, including restrictive policies, limitations to the administration of common palliative care medications, access to compassionate release, Medicare funding, access to family support as well as a lack of resources, which can heighten their existential and spiritual and physical suffering. [23,24] Ensuring that incarcerated individuals have access to compassionate and dignified end-of-life care involves implementing policies that provide comprehensive support, including psychological and spiritual care, to alleviate their suffering and funding adequate services. [23,24]

Care context

In the context of cancer patients, existential suffering and spiritual distress are prevalent due to the nature of the illness, the potentially life-threatening nature of the illness and the physical and emotional toll of treatments, as well as the uncertain prognosis. [15,25] Palliative care for these patients should involve a multidisciplinary approach to manage both physical symptoms and supports and psychosocial and spiritual concerns, aiming to improve overall quality of life. [15,25] Interventions such as general support, psychological counselling as well as dignity therapy and meaning-centred therapy have been shown to be particularly beneficial for cancer patients, helping them find meaning and purpose amidst their illness. [15,26]

For patients with non-cancer conditions, such as chronic obstructive pulmonary disease (COPD), existential suffering is significant due to the chronic and progressive nature of their disease. [4] These patients often face prolonged periods of decline, leading to feelings of helplessness and a loss of personal identity. [4,6] Many of these people will benefit with the support of generalist and specialist community palliative care but there may be access and system barriers to receiving care.

Older adults with dementia present unique challenges in palliative care, as cognitive impairments often make it difficult to assess and communicate existential suffering and spiritual distress. [14] Collaborating with family members and caregivers is essential to understand the patient's history, values, and spiritual needs. Physical causes of suffering may be difficult to evaluate accurately, necessitating a careful approach to ensure comfort. Non-verbal interventions, such as music and life review strategies can provide connection and relief when verbal communication is limited. [14,27] Access to specialist palliative care assessment and support may also encounter barriers at systemic, philosophical, and practical levels, highlighting the need for dementia-trained and culturally sensitive palliative care to support patients and families effectively.

In aged care, existential suffering and spiritual distress often begin before admission, as the transition to residency can be challenging for both individuals and their families. Common sources of distress include loss of independence, fear of death, and social isolation, with suffering frequently extending to family members. [13] Palliative care in this context involves fostering a sense of community and connection through interventions like group therapy and spiritual counselling. Integrating chaplaincy services into the care team can be particularly effective, as chaplains help address the diverse spiritual needs of elderly patients. [28] For some, chaplaincy may provide comfort and a sense of closure as they approach the end of life, while for others, depending on their faith tradition or spirituality, it supports a view of this stage as part of a broader, transitional journey. [28]

For paediatric patients, addressing existential suffering involves considering the developmental stage of the child and incorporating family-centred care approaches that provide emotional and psychological support to both the child and their family. [28,29] Palliative care teams often use play therapy, art therapy, and other child-appropriate interventions to help young patients express their fears and concerns in a non-verbal manner, which can be crucial in alleviating existential distress. [29]

Implications for families and carers

The experience of existential suffering and spiritual distress may significantly impact not only patients but also their families and carers. Carers often encounter physical, emotional, spiritual, and psychological challenges, which can contribute to elevated levels of stress, anxiety, and depression. [3,9] Carers may struggle with feelings of hopelessness, helplessness, and anticipatory grief as they prepare for the impending loss of a loved one. [9] This process may also bring unresolved relational issues and historical psycho-emotional challenges to the surface, adding complexity to carers’ emotional experiences. These burdens, compounded by the practical demands of care—such as time commitments and financial pressures—can lead some carers to neglect their own health and well-being. [3]

Supporting carers effectively involves recognising their dual role in meeting both the patient’s needs and their own emotional challenges. Carers, particularly spouses, can experience role strain as they balance caring responsibilities with other life roles and relationships. [9] Psychological support and respite care may be valuable in alleviating this strain. Structured support, such as psycho-educational programs and support groups, may offer carers practical advice, emotional support, and coping strategies, which research indicates can reduce stress and enhance well-being. [3,9]

Addressing carers’ spiritual needs is also important, as they may experience spiritual distress that is comparable to, or possibly even greater than, that of the patients they care for. [3] Spiritual counselling and interventions that foster spiritual well-being—such as discussions on meaning, purpose, and hope, along with opportunities for personal spiritual practices—can enhance carers' quality of life. [3,9] Holistic approaches that integrate psychological, spiritual, and practical support appear most effective in mitigating the multifaceted impact of existential suffering and spiritual distress on family carers.