Table 1

Person: beliefs, attitudes, experiences and health status influencing engagement in ACP

Person's beliefs and attitudes Facilitator (F) or barrier (B)Illustrative quotes
Attitude towards thinking, discussing and documenting about medical treatments, particularly related to death and dying(F) Ease with the topic of future medical treatments, including end-of-life care‘I don't have a problem talking about this; life is life; you need to take it as it comes.’ (P)
‘I don't have problems—I am straightforward and find most doctors to be straight forward too.’ (FM)
(B) Discomfort with the topic of medical treatments, in relation to end-of-life‘I don't like to think about dying. I guess if he asked I would talk about it.’ (P)
‘My need for control. My emotions. I don't like to be emotional.’ (P)
‘Angst. Feeling of uncertainty, fear of dying, fear of making a plan.’ (FM)
Beliefs as to whether engaging in ACP is appropriate or beneficial(F) Topic is important for me; belief may be based on personal experiences with life-sustaining treatments‘My GP and I talk about these things on a regular basis. After my surgery for oesophageal cancer 15 years ago, I told him not to keep me alive if things didn't go well in the surgery.’ (P)
‘My background—nursing in neurosurgical hospitals- taught me how I did not want to die.’ (FM)
(B) Topic is not appropriate or necessary for me and best left in the hands of others‘You have to have faith in what you do. Leave all things to the Almighty God.’ (P)
‘Why should (I) talk with the doctor when family all know (my) wishes?’ (P)
‘I wouldn't be comfortable talking to her doctors as she is competent to do that herself if she is willing.’ (FM)
Beliefs about the relevance of ACP and the person's perceived health status/prognosis/age(F) Belief that the topic is relevant given age, health status or prognosis‘We are getting old and starting to ‘wear out’ so it is just natural to take care of these things so our children know what to do.’ (P)
‘Face the facts, it's life. We have had on-going discussions with his doctors every time his health deteriorates. His GP told us he was a walking time bomb.’ (FM)
(B) Belief that the topic is not a priority or irrelevant while person perceived as healthy, prognosis too uncertain or that mode of death won't need discussions‘No need to, because I was in good health. I am 83, but slowing down and still playing golf. It hasn't been a priority.’ (P)
‘We keep talking about it—just haven't done it yet.’ (P)
‘Wanted to wait until I heard what his prognosis was first and then find out about the pros & cons of various treatments.’ (FM)
‘Assume that one day she will pass peacefully in her sleep.’ (FM)
  • ACP, advance care planning; FM, family; GP, general practitioner; P, patient.