Table 1

Bridging some of the expectations: challenges and opportunities

PFC preferencesChallengesOpportunities/Shape of future care
  • Initiation of discussion by someone trusted with an existing relationship

  • Not necessarily just doctors—role also for nursing and AHP teams

  • Continuity of care

  • Shared care of patients—who’s role is it?

  • Time pressures/workloads

  • Challenges of best timing of ACP discussions within disease trajectories

  • Need for ACP/DNACPR discussions in acute environments often by teams not familiar with patients

  • Proactively seeking out opportunities in community by GPs and nursing teams (eg, posthospital discharge27)

  • Proactive use of tools in hospital and community (such as the SPICT tool48) to identify patients who would benefit from ACP discussions, followed by targeted outreach by familiar medical/nursing team

  • Improving electronic communication between primary and secondary care teams regarding existing ACP/DNACPR discussions: use of electronic Palliative Care Summaries (such as the eKIS44

  • Empowering and encouraging all clinical staff to develop communication skills and mandatory training to encompass ACP/DNACPR discussions.

  • Development of specific ACP nursing roles to lead and educate rotating staff within individual wards/units/GP practices (‘Link’ nurse roles in hospital wards to interact with palliative care teams where needed for advice, GP practice ‘ACP outreach’ roles to monitor patients requiring ACP follow-up at regular practice meetings)

  • Most want family involved

  • Some fear burdening family members

  • Time pressures, communication challenges

  • Difficulty knowing who to involve, where, when to discuss

  • Family not always available when discussions take place

  • Development of support roles in acute settings following ACP discussions and to identify follow-up conversations needed

  • Integration of ACP screening questions at specialist outpatient clinic (eg, chronic disease/oncology) where frequently patients have established trusted relationships.

  • Initiating ACP discussions can be enabling for patients/families, especially in diseases such as MND29

  • Incorporation of ‘What (and who) matters to me’ section in to any ACP created with helpful descriptions such as ‘Would ‘always/prefer/ not wish’…. Mr/Mrs X, Tel…. to be involved in decisions about my care’

  • When? Timing of discussion needs to be individualised and early in illness

  • Where? Not during acute admissions, dislike of busy wards (vulnerability impacts on decision making)

  • Pressure to discuss (legal)

  • Opportunities and time is limited

  • Space and environment limited

  • Challenges of PFC expectations/fear of difficult conversations

  • Development of national processes to improve consistent awareness of good practice approach to such discussions (eg, http://www.ReSPECTprocess.org.uk)12 and incorporation of these conversations in to routine ACP planning

  • Prioritising person-centred quiet areas in workplaces/wards for discussions

  • Routine patient ACP information gathering on ALL admissions to hospital: Checking electronic information summaries,44 legal (welfare/financial/combined) guardian/power of attorney, next of kin, ‘What/Who matters to me’?, advance statement/living will to aid in ACP discussions

  • Delivery: Individualised, honest, straightforward, empathetic language. Avoiding vague terms. Consider level of education/literacy. Include discussion about QOL

  • Basic communication skills training not always sufficient

  • Often seen as the ‘doctor/consultant’s role’

  • Busier, larger acute medical takes with multimorbid patients.

  • Development of a consistent approach to communication skills training dealing with issues around ACP/DNACPR conversations embedded within medical and nursing education curricula; from undergraduate/preregistration level and throughout generalist/specialist careers. Greater understanding and embedding of health literacy approaches and resources within acute and community care settings

  • ACP, anticipatory care planning; AHP, Allied Health Professional; DNACPR, Do Not Attempt Cardio-Pulmonary Resuscitation; MND, motor neuron disease; PFC, patients, family and caregivers; QOL, quality of life.