Background / Definition
The term psychosocial denotes both the psychological and social aspects of a person’s life. Psychological characteristics include emotions, thoughts, attitudes, motivation and behaviour, while social aspects denote the way in which a person relates to and interacts with their environment. [6,29]
Recognition of the individual needs of people receiving palliative care and their family members forms the basis of palliative care. [8] Psychosocial care is one of the four domains of palliative care described by WHO. [8]
Evidence Summary
With the experience of illness, frailty, loss of independence, financial stress, changing living arrangements, and/or increasing social isolation, older people often need support to adapt and maintain their physical and psychological wellbeing. [30] A diagnosis of a life-limiting illness can further test their ability to adapt and cope and provokes common responses including anxiety; depression; grief; emotional and/or spiritual distress; fear of death, suffering, and of becoming a burden; feelings of loneliness; and a sense of loss of power, identity and meaning. [3,6,21,23]
Families often provide the majority of home-based palliative care. [14] A life-limiting illness has a ripple effect on the wellbeing of all members of the family. [14,16,29] Recognising and understanding the family’s role and need for support is important [6,14,16,29] and the relationship of clinicians with family members can be just as important as that with the older person receiving care. However, an increasing number of older Australians live alone with or without a primary carer. This has a negative impact on the psychosocial health and wellbeing of terminally ill older people such as less assistance with activities of daily living, poorer adjustment to diagnosis, reduced quality of life, and more distress. [28] This raises challenges for the provision of the community palliative care services despite, at times, informal support being provided by friends, neighbours, volunteers or social groups. [28]
Communication underpins quality care. It forms a major part of the care of older people and their family and is a conduit to psychosocial aspects of care. [1,17] Effective communication and meaningful ongoing conversations during care can assist in identifying any emotional or spiritual concerns the person may have which in turn can improve physical and emotional wellbeing. [1,17] It can also mean that the person’s goals and wishes are explored and respected as they approach death.
Training in communication skills is key in helping health professionals reduce stress and anxiety associated with difficult conversations. [3]
A person with a life-limiting illness may have difficulty at any point in time in adjusting or coping which may bring on physical and emotional signs of distress. [21] Responding to distress involves understanding and addressing a range of emotional reactions from feelings of sadness and fear to depression, anxiety, panic, social isolation, existential crisis, and spiritual crisis [1,16] and factors such as resilience, social support, culture and belief systems and previous ability to deal with stressors. [21] Part of good communication in these instances involves the sensitive recognition and articulation of this potential distress to help the person understand that they may be experiencing a usual reaction to an unusual situation. [31]
Anxiety and depression are perhaps the most common psychological symptoms experienced by people receiving palliative care [23] yet family and carers and health professionals often under-recognise and under treat anxiety and depression. [10-13]
Anxiety and depression can be due to a combination of physical and psychological causes and often health professionals pay more attention to physical causes. [1,2] Distinguishing between physical and emotional symptoms which are common to advanced disease and anxiety and depression (e.g. breathlessness, insomnia, pain, sadness, crying, or changes to appetite, weight, or sleep) can be difficult. Hence, a thorough and careful assessment is essential in determining appropriate treatment. [6,11,32]
Assessment
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). [10] Residents of aged care facilities with mild to moderate anxiety and/or depression are eligible for psychological treatment services provided by Primary Health Networks (PHNs). [33]
While there are several screening tools available for assessment of anxiety and depression, there is no ‘gold standard’ tool. [2] It is recommended that a consistent screening tool is used to enable benchmarking and that the tool used is one with known properties within the population of care. [2] A two-step approach is recommended in cancer care. That is, using a very short screening tool, followed by a more detailed screening tool, where indicated, to identify possible cases. A clinical interview can be used, if needed, to confirm a diagnosis. [2]
Treatment and intervention
While several psychosocial interventions showed the potential to improve specific outcomes for people with a life-limiting illness and carers, the evidence was mixed. [12,22-24] Psychosocial interventions include both pharmacological and non-pharmacological interventions. Non-pharmacological interventions may include massage, art therapy, music therapy, counselling, psychoeducational interventions, telemonitoring, environmental changes and psychotherapy. [12,22,24]
Psychotherapy describes psychological interventions conducted by trained individuals and involves direct verbal and interactive communication to improve distress or promote psychosocial needs such as wellbeing and QoL. [23] Examples include: (1) cognitive and behaviourally based therapies, such as cognitive behavioural therapy (CBT) which is a validated method of therapy and one of the most widely available psychotherapy interventions recommended in the treatment of anxiety and depression in people with cancer [2,23], (2) existential therapies such as life review, which is used for reflection on one’s life, which had mixed evidence for the reduction of depression, anxiety and improved QoL in older people, [23,34] and (3) other therapies such as acceptance and commitment therapy (ACT), mindfulness-based stress reduction (MBSR), and managing cancer and living meaningfully (CALM). [10,23]
Bereavement care
Most people are supported in their grief by family and friends and do not require specialist support. [35] However, a third of families receiving palliative care are at risk of prolonged grief or major depressive disorders due to some level of existing dysfunction. Identifying and supporting these families during palliative care and then into bereavement is recommended, [36] as is screening for people at risk of complications of bereavement.
Workforce
Support of staff is a component of psychosocial palliative care. Research has shown working with people who are dying is one of the most common stressors for staff in the clinical setting. While staff may experience positive personal and professional growth as a result of their experiences, death of people in their care presents many emotional challenges. [5] Self-care practices and staff support are important in assisting staff to cope and maintain psychological wellbeing. There currently remains limited research on the effectiveness of psychosocial interventions for the improvement of psychological wellbeing of staff. [4]
Underserved populations
The Aged Care Act 1997 and the National Palliative Care Strategy recognise groups whose needs are underserved and require attention. [7,25,26] Despite a higher likelihood of complex needs, people from these groups often have limited or sporadic access to healthcare (including palliative care). They often live alone and lack a support network of family and friends who can provide support. [27,37,38] Emerging evidence from programs and studies which attend to the psychosocial needs of people in these groups suggest positive impacts on physiological stress and mental health symptoms and the improved ability of staff to provide care. [25] More research is needed to better understand and meet the needs of these groups.
Quality Statement
The quality of the included systematic reviews was generally good. Primary studies often lacked rigorous methodology and had small sample sizes. Much of the reviewed literature related to the needs of cancer patients without a specific focus on palliative care or older people.
Page updated 22 January 2021