Table 4 Summary of key findings from nine systematic, scoping and rapid review studies
Year | Study title | Key Findings |
|---|---|---|
2021 | Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: A systematic literature review and narrative synthesis [24]. | Thirteen papers from eight studies were included in this systematic review. Variations between communities were apparent but three key themes were identified; 1. Strong family/community values. 2. Distinct health beliefs relating to superstitions around illness, personal care, death and bereavement. 3. Practical barriers to community healthcare; communication difficulties, limited awareness of ACP, low literacy skills and understanding of medical terminology, cultural tension and trust issues between patients and healthcare practitioners |
2020 | Identifying barriers and facilitators to implementing advance care planning in prisons: A rapid literature review [23]. | This rapid review study reported low health literacy, limited knowledge of individual disease progression, access to personal medical information, treatment options and ACP in prison populations. For those who had knowledge, some expressed a lack of trust in the prison healthcare system and a lack of concern from prison healthcare practitioners and correctional officers. This led to many perceiving their ACP wishes would be ignored. Prisoners were also reluctant to commit to ACP for fear of being viewed weak or vulnerable by prison staff and inmates and at risk of being taken advantage of. These concerns influenced their willingness to engage in ACP conversations. Those who did engage in ACP processes expressed a sense of relief that their preferences were known |
2020 | What enables or hinders people in the community to make or update advance care plans in the context of Covid-19, and how can those working in health and social care best support this process? [7] | This rapid review found patients lacked knowledge about ACP. Some had poor health literacy and a perceived lack of access to tools. Patients expected GPs to initiate ACP discussions although much depended on interpersonal relationships. Many had negative emotions toward death and were reluctant to discuss end of life care, believing ACP was irrelevant. Those who were ready to talk preferred informal family discussions than formal documentation. Many believed that a post Covid-19 world would adversely impact access to ACP resources. Culture-related factors influenced the willingness to discuss or take up ACP within minority communities. Mistrust between patients and clinicians were documented particularly in a reluctance to discussing death |
2020 | Public perceptions of advance care planning, palliative care, and hospice: A scoping review [11]. | This scoping review included 12 studies encompassing > 9,800 participants. The report found high awareness but low action-taking for ACP. A total of 80–90% of participants were aware of ACP, but only 10%-41% reported having named a healthcare proxy decision maker and 23–32% had completed a written directive. Proponents of ACP wished to protect their loved ones from the burden of future decision-making and associated complications after a patient death. Those who were disapproving did not trust health systems to follow their wishes. The report suggested the lack in uptake of this service was exacerbated by statutory regulations requiring notarised documents. Misconceptions included confusion between POLST (Physician Orders for Life-Sustaining Treatment) forms and ACDs/living wills which allow more nuanced goals to be documented |
2020 | Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences [22]. | This synthesis of systematic reviews and primary studies reported carer concerns of finding a balance between the timing of ACP conversations and patient cognitive ability to understand and make decisions. People with dementia were less distressed in discussing ACP than their more reluctant family members/carers who were often unaware of the ACP process. Positive family dynamics were instrumental in whether ACP conversations took place. The paper also reported trusting relationships between patients/family members/carers/healthcare practitioners as enablers of ACP, especially in the advance stages of dementia |
2018 | Advance care planning for patients with chronic respiratory diseases: A systematic review of preferences and practices [21]. | ACP conversations were found to be uncommon in patients with respiratory diseases despite one study reporting 68% and 99% of patients with COPD and chronic lung diseases (respectively) willing to discuss care planning. Patients often held insufficient knowledge about the nature of their own disease and were ill-informed about ACP. Patients who were worried about becoming a burden on their family was found to be a facilitator for engagement in ACP. ACP was more acceptable to patients who had previously experienced loved ones having to decide about end-of-life care or who had experience of family death. The review found that patients perceived talking about ACP to be easier when they had reached an advanced disease stage |
2018 | Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness [4]. | This systematic review demonstrated many positive and negative patient opinions regarding ACP. Many patients felt ACP was helpful although participants found it difficult to engage in discussions around dying, particularly if they felt well. Patients were often not ready or open to talking about ACP for fear of distressing or burdening family members at an already stressful time. Those who did felt empowered and in control, feeling a sense of relief at reducing the burden on loved ones. Participants also mentioned that the ACP process offered an opportunity to think about their end of life care preferences |
2018 | Overview of systematic reviews of advance care planning: Summary of evidence and global lessons [2]. | This overview of systematic reviews found ethnic and cultural differences impacted how the public perceived ACP. Caucasian members of the public were more likely to engage with ACP than ethnic minorities. Asian culture supported a collective, physician/family decision-making approach rather than appealing to the practice of self-determination and autonomy. The report highlighted a positive view towards ACP however, patients and caregivers avoided ACP conversations which were viewed as emotionally difficult. Patients and caregivers lacked readiness to engage in ACP especially when the nature of the illness was unpredictable. Older people, higher education level, and diagnosis of severe health conditions were associated with higher uptake of ACP |
2015 | Barriers to advance care planning at the end of life: An explanatory systematic review of implementation studies [20]. | This explanatory systematic review reported perceived patient and family members’ uncertainty of prognostic/illness trajectory resulting in an unwillingness to engage in ACP. Strong behavioural norms encouraged avoidance actions around decisions to legitimise, record or share future care plans |