Psychosocial Care - Synthesis

Psychological issues like distress may manifest as depression, anxiety, confusion, demoralisation, and grief. Social issues may relate to loss of identity, loss of meaningful connections, loss of ability to fulfil potential and meet obligations, financial issues and interruption of social aspects of everyday life (connectedness, maintaining a social network(s) and the ability to do daily tasks). As a person approaches death with declining function requiring help with intimate care (such as toileting, showering, dressing), their sense of dignity can be significantly fractured which can result in a higher sense of hopelessness, depression and desire of hastened death. [12] Psychological issues can have an influence on social issues and vice versa. An example of this may be seen in the form of a person who experiences depression having a loss of desire to maintain social connectedness with family and friends or their inability to cope with diagnosis and prognosis, or lack of adherence to treatment therefore impacting treatment outcomes. [8] Physical issues are also entwined in this relationship [13-15] such that, for example, a person with pain or limited mobility may be unable to participate in social circles or the community and therefore become isolated, lonely and depressed.

A 2001 report indicated that 43% of older Australians living in a private dwelling did not have a primary carer and this was projected to rise to 65% by 2031. [16] Not having a primary carer has a negative impact on the psychosocial health and wellbeing of terminally ill people because they have less assistance with activities of daily living, poorer adjustment to diagnosis, reduced quality of life (QoL), and more distress. [16] This raises challenges for the provision of community palliative care services despite, at times, informal support being provided by friends, neighbours, volunteers or social groups. [16] At-home palliative care sevices for older Australians living alone may represent 10% of the client load. [16]

Quality statement

Much of the reviewed literature related to the needs of people with cancer without a specific focus on non-malignant palliative conditions or older people. The quality of the included systematic reviews was generally good however primary studies often lacked rigorous methodology and had small sample sizes. Both systematic reviews and primary studies showed great variation in the nature of the interventions, setting, population, mode and duration of delivery, measuring tools and outcomes measured. Variation also occurred in who delivered the intervention, and ranged between health professionals, researchers and family members, however, not all studies provided this information. A clear definition of psychosocial needs was often missing from primary studies. Interventions were often poorly described and there was uncertainty as to whether the interventions were undertaken as described. As psychosocial care is an integral component of palliative care, research on psychosocial care was sometimes found implicit to research under the title of palliative care.

Evidence synthesis

Wellbeing and quality of life

With socio-economic and physical health changes in older age, older people can experience changes in their relationships and experiences which can diminish self-esteem. This can affect the older person’s psychological and emotional wellbeing, life satisfaction, QoL, and coping behaviours. [6,17,18]

Diagnosis of a life-limiting illness may further affect a person’s psychological and emotional wellbeing and provoke a number of common responses including anxiety; emotional and/or spiritual distress; depression; grief; fear of death, suffering, and becoming a burden; feelings of loneliness; and a sense of loss of power, identity and meaning. [4,14,15,19-21]

Developing an understanding of the major concerns of the person helps in understanding the process of decision-making at the end of life. For example, people with Chronic Kidney Disease (CKD) weigh up many factors in deciding whether to withdraw from dialysis treatment. [22] They consider the unrelenting physical and psychosocial suffering in the context of their relationships, self-worth and increasing frailty. Carers of people with CKD find it difficult to make decisions about dialysis therapy initiation and discontinuation. Respectful and attentive communication can help empower people with CKD and their carers to discuss and convey their values and how these contribute to decisions about treatment. [22]

People with frailty nearing the end of their life experience similar emotional distress and psychological burden as people with cancer and other recognised terminal diagnoses. [23] Despite a perception of low levels of social support, people with frailty are less likely to have their psychosocial needs assessed. [23] Continuity and understanding of their preferences at all points during the final phases of life are critical inclusions in the palliative care pathway. [23]

Families often provide the majority of home-based care for people receiving palliative care. [15,24] A life-limiting illness has an impact not only on the person but also on their family. [6,25] According to the family systems theory, illness within the family has a ripple effect on the wellbeing of all members of the family. [24,26] Distress experienced in one family member is found to relate to another. [27] Failure to recognise and understand these impacts has been shown to result in an inadequate support for the wider family. [6,19,24-26] Therefore, the relationship formed by clinicians with family members can be just as important as that with the older person receiving care.

Developing an understanding of the major concerns of individual family members and the family as a whole empowers planning of appropriately focused interventions. [6,24] Family members who are inadequately supported during this time can have a higher rate of depression and complicated grief. [6,17,25] Conversely, family members who are better supported and better prepared have better outcomes. Knowledge can relieve family anxiety, improve problem solving, and enhance both emotional and physical wellbeing. [24] Although, ongoing quality interactions with families can offer a form of emotional support through the development of a sense of trust and reliability [4,6,17,27] this does not always occur. [21]

It is important to acknowledge that families have positive and negative ways of functioning and in the context of end of life of a relative, this may lead to tensions or family conflict. 

Communication

Good communication is at the core of positive end of life experiences. Communication underpins every aspect of care and is a conduit to psychosocial aspects of care. [28] Unmet communication needs of people with life limiting illnesses and of carers can undermine the coordination of care and compromise the provision of relevant information and subsequent decision-making. [21]

Effective communication and meaningful ongoing conversations during care can help facilitate knowledge about the older person, their life experiences and needs of care. Through this increased understanding of the person, it assists in identifying any emotional, or spiritual concerns they may have which in turn can improve physical and emotional wellbeing. [17,29,30]

Allowing adequate time for communication to occur improves the quality of the interaction with the person, with research showing a reduction in care time is achieved due to greater engagement, cooperation and a reduction in distress. [17,29,30] Conversely, poor communication can lead to poor understanding of a person’s concerns which has a known association with the development of depression and anxiety. [29] 

From the perspective of the family of the person receiving palliative care, their information needs are critical. Families often wish to be kept informed of their relative’s condition and value open and timely communication from staff. Deficiencies in conversations, particularly around changes in their relative’s health status, often result in family members experiencing feelings of abandonment, anxiety, distress and fear of the unknown. Fully engaging family members in information sharing and decision making with honest, open communication can allow them to make decisions around how best to spend their remaining time with their family member. [27]

Training in communication skills is key in helping health professionals reduce stress and anxiety associated with difficult conversations. [4]

More information can be found in the palliAGED topics Communication at End of Life and Communication Skills.

Psychological distress

The following relates to the more common expressions of psychological distress that might benefit from psychosocial care approaches. For information on mental health disorders, see the palliAGED topic Mental Illness.

A person with a life-limiting illness may have at any point in time difficulty in adjusting or coping which may bring on physical and emotional signs of distress. [14] Responding to this distress involves understanding and addressing a range of emotional reactions such as anxiety, depression, grief, anger, and factors such as resilience, social support, culture and belief systems and previous ability to deal with stressors. [14]

Psychological distress exists on a continuum from feelings of sadness and fear, to depression, anxiety, panic, social isolation, demoralisation, existential, and spiritual crisis. [26,29] People receiving palliative care can experience significant psychological distress which can interfere with their ability to cope effectively with their prognosis and the symptoms. Psychological distress is often considered from the perspective and experience of the person receiving palliative care; however, research suggests that recognising the dynamic interactions amongst family members is helpful in the assessment and management of distress. [14,26]

Evidence suggests that adults with palliative care needs presenting with high distress are most likely to benefit from social support (e.g. palliative day care, support groups and group therapy) and highlights the need for clinicians to be aware of social isolation. [31]

In the care of older people at the end of life, more attention is often paid to physical symptoms rather than psychosocial needs such as anxiety, loneliness and depression. [5,21,29] This may be because physical symptoms are more easily measured and classified [5] or as a result of time constraints of interactions with health professionals. [5,8,29] Anxiety and depression are perhaps the most common psychological symptoms experienced by people receiving palliative care. [20]

Anxiety and depression

It is estimated that between 10% and 15% of older people experience depression and about 10% experience anxiety. [32] Certain groups of older people have a higher risk of experiencing poor mental health: older people who are carers, [32,33] and residents of aged care facilities where it is estimated that around 35% to 52% have mild, moderate or major symptoms of depression [32-35] and between 6.5% and 58.4% for anxiety. [36] These symptoms are often under-recognised and undertreated. [15,37-39]

Anxiety

In advanced illness, anxiety can be caused by disease progression (e.g. pain, dyspnoea, functional impairment), adverse drug effects, or drug withdrawal. [36,40] It is equally often related to psychological factors such as fear of death, dying and suffering; of separation from family; of being a burden on others, and of being unable to achieve or complete certain tasks or goals. [14,40]

Depression

Depression is common in residents in aged care facilities and in the context of life-limiting illness and palliative care. [5,20,35] In adults with advanced cancer, depression is associated with significant suffering, reduced QoL, reduced adherence with treatment and it can place a psychological burden on family. [37,41,42]

Delirium

Delirium is a sudden and severe change in brain function that causes a person to appear confused or disoriented, or to have difficulties maintaining focus, thinking clearly, and remembering recent events, typically with a fluctuating course. [43] These symptoms typically fluctuate and cause distress for the person, their family, and the health professionals who care for them. [43,44] Delirium is very common in advanced illness and highly prevalent across all palliative care settings. [44] Studies have shown prevalence rates range between 13.3% and 42.3% upon admission to palliative care units or hospices, with 60% (median range) of people developing delirium throughout their admission. [43,44] Lower prevalence rates have been found within community care settings with rates ranging between 4% and 12%. [44] In all settings, prevalence is highest prior to death (55% to 88%). [43,44]

Older age, sensory impairment, polypharmacy, infection (such as urinary tract infections), electrolyte disturbance, changes in environment, pre-existing cognitive conditions are all risk factors for delirium which requires careful assessment and management with both non-pharmacological and potentially pharmacological interventions. [43,44] Of note, hypo-active delirium is the most prevalent psychomotor subtype of delirium [44] and can be confused with fatigue or depressive conditions due to the passive, withdrawn presentation of the disease. [43,45] Cognitive assessment and careful monitoring (as well as informant reports, noting any changes to the person’s routine/medications/medical status, etc.) will assist with differential diagnosis. [43,45] As delirium is often under-recognised and under-reported, timely recognition and screening is of importance. [44] 

Screening and assessment

Recognition of the individual needs of people receiving palliative care and their family members forms the basis of holistic care. [46,47] Needs assessments can help to identify what the person and their families consider important and where they need help and support. [46,47]

Anxiety

Careful assessment of anxiety is essential in determining appropriate intervention and management strategies, [19,36,40] particularly as interventions are found to be most effective when implemented early in older adults. [48] Physiological signs of anxiety in older people include shortness of breath, and palpitations. These are also common symptoms of many physical health conditions (e.g. cardiovascular disease, hyperthyroidism) whose prevalence increases with advancing age. [36] Anxiety may also manifest itself in symptoms such as dizziness, palpitations, insomnia, or pain or may cause an exacerbation of these symptoms. It may hamper the person’s ability to make decisions about care or adhere to treatment. [14,36,40]

Symptoms of anxiety in adults are difficult to classify because they can be a normative or excessive reaction to disease progression, an adverse effect of certain treatments or drug interactions, a response to poor symptom control, a clinical anxiety disorder or a combination of these factors. [3,36] Similarly, it can be difficult for a person to recognise this as anxiety given the physiological manifestations of anxiety can be interpreted as disease progression or organic in origin.

Depression

With a prevalence range in adults in palliative care settings between 1.5% and 50%, it is suspected that depression is often underdiagnosed and undertreated. [5,13,39,49] Advanced illness and its treatment can cause physical symptoms (changes in appetite, weight, sleep, libido, energy changes) and emotional symptoms (sadness, fleeting thoughts of suicide, crying, limiting social activities) which are also common symptoms in depression. Distinguishing between the two, to determine the underlying cause, can be difficult. [37,50]

Formalised routine screening for anxiety and depression in people with cancer at key points of the person’s journey (including transition to palliative care) is recommended by the Australian Psycho-oncology Co-operative Research Group (PoCoG). [38] Residents of aged care facilities (residents) with mild to moderate depression are eligible for psychological treatment services provided by Primary Health Networks (PHNs). [35]

Assessment Tools

While there are several screening tools available for assessment of anxiety and depression, there is no ‘gold standard’ tool. It is however, recommended that a consistent screening tool be used to enable comparability and benchmarking [3] and that it is a tool with known properties within the population of care. [51] The Geriatric Anxiety Inventory (GAI), the Geriatric Depression Scale (GDS), the Two-Question Screen [33,52] and UCLA loneliness scale are commonly utilised, reliable scales used for assessment of psychological outcomes in older people in different settings including residential aged care facilities. [53] A recent systematic review examined the use of the Two-Question Screen for older adults and found this to be comparable with other tools, such as the Geriatric Depression Scale. [33,54]

For cancer care, a two-step screening approach is recommended. Firstly, the use of a very short screening tool, followed by a more detailed screening tool to identify possible cases of depression. Should diagnosis then be required a clinical interview can be undertaken. [3,33] The Edmonton Symptom Assessment System (ESAS-r) or the Distress Thermometer (DT) with its problem checklist are recommended as brief screening tools. [3,19,38,55,56] If anxiety or depression is identified, completion of a more detailed screening tool such as the Hospital Anxiety and Depression Scale (HADS) is recommended. [38] A formal psychological assessment can then more accurately determine the nature and severity of anxiety and/or depressive symptoms identified by these screening tools. [38]

When anxiety or depression is identified it is recommended that one person in a treating team takes responsibility for ensuring that appropriate assessment, referral and follow-up are undertaken. [38]

The Patient Management section of CareSearch has more information on assessment tools within the topics of this section.

Interventions / Management

Psychosocial needs can be best addressed by a multidisciplinary team including: careworkers, counsellors, GPs, medical specialists, nurses, pharmacists, psychologists, occupational therapists and social workers. [2,3,38,40,57-59] With a greater proportion of the population selecting palliative care at home or in RACFs, GPs are commonly involved in the psychosocial support of older people approaching the end of their life. [60] The GP may be the first point of call for psychosocial assessment and care and is often involved in transitional care and helping with adjustment issues, pain management and the appropriate use of medicine. [60] Community pharmacists also play an important role in the supply and safe use of medication and the provision of advice to patients and their carers. [61,62] Their role often extends to psychosocial support of patients and their families. [61,62]

Nurses provide much of the direct care and care coordination for people receiving palliative care, aged care, and cancer care services and can influence their outcomes. [8,40,63-65] The relationship that can be built over a period of time puts them in a unique position to monitor psychosocial coping and distress of people in their care. [63]

Spiritual care can overlap with psychosocial care. [66] Spiritual beliefs can help a person with a sense of connection, involvement, purpose and meaning [66,67] and is linked to a person’s sense of self-worth, dignity and quality of life. [66] Spirituality can provide the basis upon which a person can respond to care, to treatment options and face their death, it can help carers cope with dementia caregiving experiences, and support the person and their family in their grief. [67]

Sexuality and its expression also forms part of psychosocial care. Sexuality and its expression have numerous benefits for older people, both physical and psychological, and can provide much comfort to older people including residents of aged care facilities. [68,69] Safe, respectful and inclusive care of older people should respect diversity and incorporate intimacy and sexuality. [69]

The social components of an older person’s life can contribute to or alleviate suffering. [70] Social support networks are important in the psychological wellbeing of older people [18] and people with a life-limiting illness. These social networks, and sense of social support and trust are sometimes collectively described as social capital. [18] Within these social networks, family carers play an important role in providing care. Families of culturally and linguistically diverse backgrounds (CALD) can demonstrate variations in sense of obligation, roles in decision-making and direct care, understanding and transmission of information, and grief and bereavement. Providing culturally responsive care is a part of psychosocial care.

Psychosocial interventions

Psychosocial interventions can be broadly divided into two types of treatments, non-pharmacological and pharmacological. Interventions may be used in conjunction with other treatments, or depending on symptom severity, both pharmacological and non-pharmacological treatments may be indicated. [3]

Pharmacological and non-pharmacological treatment approaches should consider the cognitive status of a person, as treatment approaches can differ accordingly. This is an important consideration in depression management. For example, in people with dementia, non-pharmacological interventions such as reminiscence therapy has some evidence for alleviating depression, whereas pharmacological management with antidepressants in older people can result in differential responses [39] including an exacerbation of existing cognitive deficits. [3] As many pharmacological and non-pharmacological interventions take some time to reach therapeutic effect, they are not appropriate in the last weeks of life. [33]

Pharmacological treatment

Pharmacological treatment of anxiety and depression (not specifically older adults) can be found in the Therapeutic Guidelines (subscription required), the Oxford Textbook of Palliative Medicine (5 ed.) (subscription required), the Oxford Handbook of Palliative Care (subscription required), the Oxford American Handbook of Hospice and Palliative Medicine, and the Scottish Palliative Care Guidelines - Depression. [13,19,37,42,49,50,71] 

Non-pharmacological treatment

Non-pharmacological treatment of anxiety and depression as well as other psychosocial needs such as QoL, wellbeing and the ability to cope and maintain social connections [72] includes interventions such as: counselling; complementary therapies such as relaxation, massage, music and art therapy; [14] psychoeducational interventions; telemonitoring and video monitoring; individual and group therapies; communication skills; exercise and physical activity; and psychotherapy. [39,59,72-74]

Many interventions often have multiple components making it difficult to distinguish which part or parts are responsible for any observed effect. However, findings from a systematic review on nurse led interventions to manage anxiety in people with advanced cancer suggest effective interventions: [40]

• are tailored to the needs of the person
• respond to the underlying causes of anxiety
• provide the opportunity for the person to tell stories
• routinely measure the level of anxiety
• are effective in a short time period
• are based on multi-dimensional domains
• are easily accessible.

Psychotherapy interventions

Psychotherapy features prominently in the research literature as a treatment to address psychosocial needs. It describes psychological interventions conducted by trained individuals and involves direct verbal or interactive communication. [13,37] Psychotherapy might be favoured over pharmacotherapy because of poor tolerability of antidepressants in people with advanced cancer. [41] Examples of psychotherapy include: (1) cognitive and behaviourally based therapies, including cognitive behavioural therapy (CBT), cognitive therapy, problem-solving therapy, and interpersonal therapy; (2) existential therapies including dignity therapy (DT), legacy, life review, reminiscence therapy, meaning-centered psychotherapy (MCP), managing cancer And living meaningfully (CALM), and meaning making; and (3) others such as acceptance and commitment therapy (ACT), mindfulness-based stress reduction (MBSR), and supportive expressive therapy. [20] While a number of these interventions showed the potential to improve specific outcomes for people with life-limiting illness and their carers, evidence was mixed and there needs to be more rigorous studies. [20,39,59,72,73,75-77]

• Cognitive Behaviour Therapy (CBT) is a validated method of therapy recommended for use in the treatment of anxiety and depression in people with cancer. [38] CBT is used to modify processes to reduce negative emotions and is one of the most widely available interventions. [3] A high level meta-analysis (32 primary studies) found CBT was most effective when implemented by mental health providers and treatment modifications were made that accounted for age and health related factors for older adults. [20]
• Dignity Therapy (DT): The goal of Dignity Therapy is to relieve psycho-emotional and existential distress though reflection on issues that are important to the person and the creation of a legacy document. [76] Results from one systematic review (5 RCTs) were not conclusive as to the effect of DT on anxiety, depression and wellbeing, [72] and two other reviews found no significant effect. [20,76] However, when DT was applied to people with high baseline levels of psychological distress, one primary study showed a statistically significant reduction in anxiety and depression, and another study found a statistical decrease in anxiety. [72] DT seems most suited to people experiencing moderate levels of anxiety or depression towards end of life. [76] Most DT research has taken place in the USA, UK, Canada, and Australia. [72,76] There is insufficient evidence as to its suitability with cultural groups other than Anglo-Saxon. [76] For other groups, cultural, the elderly in aged care, people with dementia, and people with amyotrophic lateral sclerosis (MND) it appears that a number of factors can interfere with the successful delivery of DT including age-related memory impairment, the potential to cause distress by highlighting the impending death, and varying cultural sensitivities and cultural understandings of the questions. [72,76] DT appears to be conducted by a wide range of practitioners, including pastoral care providers, aged-care workers, and volunteers yet clear guidance is lacking as to who should provide it and their requisite training and skills. [76]
• Life Review is a psychoanalytically based therapy used for reflection on one’s life in regard to both positive and negative aspects. Life review is useful for those who have undergone difficult life experiences. [74] Evidence from a systematic review of older adults (15 primary studies) showed a significant reduction in depression. Effectiveness was likely to be influenced by the duration of the intervention, with interventions of approximately 8 weeks shown to be effective. This may be due to the time necessary for a relationship to be established and trust to be forged. [73] In contrast, a high level meta-analysis (32 primary studies) found DT had no significant effect for the reduction of anxiety, depression or QoL in older adults who were candidates for palliative care. [20]
• Reminiscence Therapy is a psychosocially based technique used to delve into the history of a person’s life in order to promote wellbeing, socialisation, communication and self-confidence. [73] A high level systematic review (five studies) in people with dementia found mixed evidence for the effectiveness of reminiscence therapy to improve mood, behaviour, cognition and carer strain. [59] With another review of residents in aged care facilities, without cognitive impairments, showed limited evidence for reminiscence therapy to reduce social isolation. The studies within this review were based on poor methodology. [39]
• Group Therapeutic Interventions are aimed at promoting social support, enhancing problem solving and coping skills. [14] A systematic review (seven primary studies) found group therapeutic interventions, which included supportive-expressive group psychotherapy and group cognitive behavioural therapy, to have a significant effect on psychological wellbeing in areas such as mood disturbances, helplessness, coping, intrusive thoughts and depression. Two of the seven studies identified the higher the level of baseline distress the greater the benefit from the intervention. [31]
• Meaning-Centered Psychotherapy (MCP) has been used for more than a decade to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their life even as they approach death. [77,78] Emerging evidence supports the efficacy of MCP as an intervention to increase a sense of meaning, spiritual well-being, and hope, while decreasing end of life despair. [77,78]
• Managing Cancer and Living Meaningfully (CALM), based on cognitive behavioural therapy (CBT) techniques, is a brief, tailored supportive-expressive psychotherapeutic intervention that can be used by clinicians who are not necessarily experts in CBT. [75,79] Emerging evidence indicates that CALM is effective in relieving depressive symptoms and may prevent the onset of depressive symptoms. Evidence also suggests CALM may reduce death anxiety in people with advanced cancer and help them prepare for death. [75,79] While there is currently limited research available on CALM therapy, it is a recommended therapy by the Australian Psycho-oncology Co-operative Research Group (PoCoG) in the management of anxiety and depression in adult cancer patients. [38]

Other intervention approaches

Massage

Evidence from one systematic review (6 primary studies) suggests that massage can help reduce pain and levels of anxiety and depression in people with advanced adult cancer. [80] Recommendations were made in regard to the importance in oncology massage of informing the person of the type of massage and kind of physical contact to expect, with the aim to alleviate any associations the person may have with touch and painful or invasive techniques. Importance was also placed on the person being treated with empathy and respect. [80] The study also noted that massage can be particularly beneficial for people that are socially isolated, and those with little physical contact and affection. [80]

Environment

Environmental design of aged care facilities has also been found to offer a form of psychosocial support. A systematic review found the provision of privacy and promotion of a homelike environment, where families were encouraged to bring in personal items, was found to positively contribute to a person’s dignity and wellbeing. Family satisfaction with end of life care was also improved. [27]

Psychological care for the marginalised

Access to and experiences of palliative care can vary considerably. The Aged Care Act 1997 and the National Palliative Care Strategy recognise that several populations are underserved, and the needs of the following population groups should be identified and respected [9,81]:

• Aboriginal and Torres Strait Islander peoples
• people from CALD backgrounds
• people who live in rural or remote areas
• people who are financially or socially disadvantaged
• people who are experiencing homelessness or at risk of becoming homeless
• LGBTI people
• veterans
• care leavers
• people affected by forced adoption.

Refugees, prisoners, people with disabilities, people living with dementia, and people living in residential aged care can also be included in this grouping. [82,83]

People can identify with one or more population. For example, a European immigrant who identifies as LBGTIQA+ and who is socially isolated and living with dementia.

There is interplay between these circumstances of disadvantage. For example, those who suffer trauma through war, forced separation or institutionalisation at an early age may later become homeless and may experience periods of incarceration.

Many people from these underserved populations experience a higher burden of multi-morbidities, including psychiatric conditions, nutritional insufficiency, substance misuse, trauma, violence, discrimination, housing insecurity and/or institutionalisation. [84,85]

Despite a higher likelihood of complex needs, these populations often have limited or sporadic access to healthcare (including palliative care) and general community services and have experiences of inferior care and treatment. They often lack a support network of family and friends who have the capacity to help and support life in a stable, secure and accessible residence. [83-85]

Emerging evidence from programs and studies which attend to psychosocial needs in these populations suggest benefit with respect to client physiological stress and mental health symptoms, and improved ability of staff to provide care. [82] More research is needed to better understand and meet the needs of these groups.

palliAGED hosts information about these groups in the section Specific Needs.

Bereavement care

For most people, grief is supported over time by a person’s family and friends. Most people who experience normal grief do not require specialist counselling, but can benefit from reassurance, acknowledgement of their losses, and access to information. [86] Resilience is being used to understand and acknowledge the way that older widows and families of people with chronic illness deal with their grief and bereavement. [86-88]

Support for family carers including bereavement care is a core function of palliative care. [6,19,24-26,88,89] Australian guidelines for the support of family carers of people receiving palliative care recommend the following approach to bereavement care [89]:

• At an appropriate time after the death, a member of the interdisciplinary team contacts the family carer(s) to offer condolences and respond to queries. And in the case of a home death, to assess the need for a home visit.
• Develop a preliminary bereavement care plan based on the needs of the family carer(s), the pre-death risk assessment, and the circumstances of the death (e.g. unexpected or traumatic).
• Contact the family carer(s) and other family members (as appropriate) to assess needs at three to six weeks post-death and adapt bereavement care plan accordingly. With another follow-up at six months post-death.
• At an appropriate time after the death of a person, the interdisciplinary team should discuss the quality of care provided to the person and family carer(s) and the nature of the death. 

Identifying before a death those family members at risk of suffering chronic depressive symptoms is recommended by Kuo et al. [88] in their review of depression in bereaved families of people who are chronically ill. It is estimated that a third of families receiving palliative care have some level of dysfunction which places them at risk of prolonged grief or major depressive disorders. [25] These families need additional care, ideally started during palliative care, and continued into bereavement to provide continuity of service. [25]

For more on Bereavement see the topic in the palliAGED Evidence Centre and the CareSearch Clinical Evidence.

Staff support

Support of staff is a component of psychosocial palliative care.

Many people working in palliative care or aged care find meaning from their work but can also find it challenging to face deterioration and death of people in their care, cumulative loss and distress. [90] Research has shown that working with people who are dying is one of the most common stressors for staff in the clinical setting. [90,91] Challenges staff may contend with due to recurrent exposure to deterioration and death include breaking bad news, coping with an inability to cure, challenges to personal beliefs, exposure to family’s emotional responses, as well as the ‘accumulated loss phenomenon’. [91] Ultimately, these demands can affect a staff member’s emotional management and lead to stress and burnout. [90] Stress and burnout may present in a range of physical and emotional symptoms such as tiredness, headaches, sleep problems, frustration, low morale, anxiety and even memory loss. In addition to the challenges staff may experience to their own psychological and social health, their wellbeing can also have an impact on work performance and the quality of care offered to the people they care for, including psychological and social interventions. [29,92]

While measures are yet to be developed, research has identified a range of practices which are used successfully for self-care. These are all based on the concept of the clinician expressing their thoughts and feelings to become aware of and resolve them. [93-95] Aspects of a clinician’s life which might benefit from expression can be variously divided into a range of dimensions including physical, psychological, emotional, spiritual, professional and social.

There currently remains limited research on the effectiveness of psychosocial interventions for the improvement of psychological wellbeing of staff, with evidence being of low quality and inconclusive as to which psychosocial interventions meaningfully improve staff’s psychological wellbeing. [92,93] A palliative care worker’s ongoing exposure to grief and loss puts them at high risk of occupational stress and burnout. [90,93-97] Organisational support to staff is also integral to ensure they are equipped to deal with the challenges of working within palliative care. Several steps organisations may consider is through the provision of appropriate education, training and skill development especially in the areas of psychosocial care and communication skills. [50,83,98]

palliAGED hosts information in the section Self-Care and Staff Support.

Evidence gaps

• There is a lack of research on identifying and responding to psychosocial needs of older people at or approaching the end of their life.
• Future research needs to harmonise measurements, measuring tools and measuring end points (outcomes) and the intervention duration to enable comparability and benchmarking.
• Information on how an intervention may work and their essential components should be established.
• There is a need for a brief sensitive bereavement tool to pick up early complications of grief in older people.

Page updated 22 January 2021