Table 5 Summary of key findings from 11 primary and secondary data analysis articles

2021

Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care [34].

Participants described a complex history of mental health conditions coupled with a diagnosis of a terminal illness which adversely impacted their ability to engage with healthcare services. Feelings of mental health stigmatisation affected their willingness to try to access palliative care when they became incurably ill. Participants therefore, had little or no awareness of what support was available. Those participants who held knowledge felt a reluctance from clinical staff to initiate end of life or ACP conversations due to fears of de-stabilising individual patient’s mental health. This avoidance made participants feel invisible and abandoned. Most participants expressed a need for supportive or care networks to advocate on their behalf and for all healthcare staff, including mental health teams, to have better knowledge of what end of life/ACP services were available. Participants also felt healthcare staff needed develop confidence to talk to patients, ask questions and refer to appropriate well-coordinated services

2021

‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study [35].

This article found that 71.5% of participants (n = 1,201) had not heard of ACP. Of the 28.5% who knew the term, just 7% had engaged with ACP. ACP was associated with death and dying and considered a taboo subject for general discussion. Viewed as a ‘last resort’. Many misconceptions were aired from those who knew about ACP, i.e., involves medical care and treatment options only or only applicable at the end of life. When asked if participants would like to find out more about ACP, 68% said no. Most found the subject too difficult to broach with family members or healthcare practitioners for fear of causing upset or distress. However, 81.2% said they would be comforted knowing they had left wishes with their family. Participants were noted to state that if they did not think about their own mortality, it would not happen. On the other hand, some felt that if ACP was normalised, barriers surrounding the subject could be broken. The Covid-19 pandemic was viewed as a platform to create an acceptable rational for the public to discuss ACP

2020

What is the public opinion of advance care planning within the Punjabi Sikh community? [33].

Of 311 participants, just 30% held some understanding of what ACP meant and the same proportion knew how to access services. No specific cultural, religious or ideology barriers were found relating to discussing ACP with family and medical staff. Statements such as ‘too emotional to think about’ or ‘it’s a hard discussion to have’ were synonymous with other reports. The study found misconceptions around choosing/refusing life-sustaining treatments as 36% believed that CPR was mandatory as did 22% about intubation, ventilation and life support treatments. Results suggest a poor understanding of the decision-making processes and who can make final decisions

2020

Associations between the intention to use early palliative care, sources of information, and attitudes toward a good death in Korean adults [32].

Good family relationships were associated with low intention to use palliative care. Trust in medical staff, being involved in the decision-making process and being respected as an individual were associated with high intention to use palliative care. Patients were more inclined to trust healthcare practitioners than media reports. Asian culture associated palliative care with death and as such held negative views such as fear and distress towards discussing future care plans

2020

Exploring patient-reported barriers to advance care planning in family practice [31].

Participants lacked knowledge of ACP and felt others would take care of it. Those who knew about ACP did not see it as a priority or a necessity. The topic was viewed as too emotive, frightening, negative or depressing. Respondents were also concerned about causing conflict or distress to family members. Others did not trust family members to make care decisions. There was a clear indication that participants felt ACP discussions should be initiated by GPs

2020

Lack of awareness and common misconceptions about palliative care among adults: Insights from a national survey [30].

Less than one third of participants knew about palliative care. Female gender, having a college degree, higher income, and being a caregiver were associated with palliative care knowledge. 77% of participants held misconceptions around palliative care and 44% associated it with death. Misunderstandings were greater in those with less than a high school education and insurance status variables. Some participants noted that acceptance of palliative care meant ‘giving up’

2019

“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: A qualitative study [29].

Patients tended to trivialise their illness with reports of ‘everything is fine’ and avoided discussing palliative care. Most preferred to hold a positive outlook and live day-to-day. They also reported a lack of control over events and did not see the point in having care planning discussions. Family members were not comfortable talking about care planning to healthcare practitioners who they did not know. Caregivers wanted and expected medical staff to provide ‘reality check’ in relation to palliative care

2019

Framing advance care planning in Parkinson

Disease [28].

ACP was defined in a variety of ways by participants, largely shaped by their experience of Parkinson disease (PD) and other end of life experiences prior to diagnosis. These definitions influenced engagement in ACP. Some participants acknowledged the potential for future PD-related changes where constructive views of ACP led to planning trips or activities to achieve their goals of personal fulfilment and quality of life. Others considered ACP in relation to their perception of their illness and avoided ACP conversations, believing ACP primarily as end of life planning. Some patients preferred to live in the hope that their PD would be cured and denied the potential of death. Cognitive decline during disease progression and feeling overwhelmed by PD symptoms were a barrier to engaging in ACP. Lack of trust in health care systems was noted as some patients believed that regardless of a documented ACP, preferences and wishes would not be honoured. Incomplete knowledge, particularly regarding CPR led to the possibility of some patients making decisions they did not fully understand. Other misconceptions were identified in that some participants believed that completing advance directives only were sufficient which limited discussions about the wider process of ACP such as life values and the rationale or implication of the ACP document

2019

Dissonance on perceptions of end-of-life needs between health-care providers and members of the public: Quantitative cross-sectional surveys [27].

ACP directives were present for 23% of study participants, higher than the 14% previously reported Australia-wide. ACP conversations were considered informal by the general public rather than documented preferences. Most members of the public (92%) felt strongly about knowing the truth and wanted to be involved in treatment decisions. They agreed they should be informed by their GP about whether it is likely that they may not live more than a few months in contrast to clinicians’ perceptions

2015

What do Canadians think of advanced care planning? Findings from an online opinion poll [26].

Canadians had little knowledge of the term ACP. Participants tended to talk to family and friends about care planning rather than with healthcare practitioners. Older patients and women were more likely to consider ACP (75%) and more than 90% had discussed their preferences with family members. However, only 30% held discussions with doctors. Higher levels of education and income had a positive effect on the probability of knowing the term ACP and the recording of an ACP

2015

Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning [22].

Participants lacked knowledge of ACP and held misunderstandings around the ACP process. Inaccessibility, complexity of forms, legal and financial confusion alongside fear and mistrust issues were noted by patients. Patients were reluctant to take action and ‘put-off’ ACP. Families were viewed as the driving factor behind ACP. Awareness of the importance of ACP increased with age