title: "It is not the fading candle that one expects": general practitioners' perspectives on life-preserving versus "letting go" decision-making in end-of-life home care.
abstract: BACKGROUND
  Many general practitioners (GPs) are willing to provide end-of-life (EoL) home care for their patients. International research on GPs' approach to care in patients' final weeks of life showed a combination of palliative measures with life-preserving actions.
  
  
  OBJECTIVE
  To explore the GP's perspective on life-preserving versus "letting go" decision-making in EoL home care.
  
  
  METHODS
  Qualitative analysis of semi-structured interviews with 52 Belgian GPs involved in EoL home care.
  
  
  RESULTS
  Nearly all GPs adopted a palliative approach and an accepting attitude towards death. The erratic course of terminal illness can challenge this approach. Disruptive medical events threaten the prospect of a peaceful end-phase and death at home and force the GP either to maintain the patient's (quality of) life for the time being or to recognize the event as a step to life closure and "letting the patient go". Making the "right" decision was very difficult. Influencing factors included: the nature and time of the crisis, a patient's clinical condition at the event itself, a GP's level of determination in deciding and negotiating "letting go" and the patient's/family's wishes and preparedness regarding this death. Hospitalization was often a way out.
  
  
  CONCLUSIONS
  GPs regard alternation between palliation and life-preservation as part of palliative care. They feel uncertain about their mandate in deciding and negotiating the final step to life closure. A shortage of knowledge of (acute) palliative medicine as one cause of difficulties in letting-go decisions may be underestimated. Sharing all these professional responsibilities with the specialist palliative home care teams would lighten a GP's burden considerably. Key Points A late transition from a life-preserving mindset to one of "letting go" has been reported as a reason why physicians resort to life-preserving actions in an end-of-life (EoL) context. We investigated GPs' perspectives on this matter. Not all GPs involved in EoL home care adopt a "letting go" mindset. For those who do, this mindset is challenged by the erratic course of terminal illness. GPs prioritize the quality of the remaining life and the serenity of the dying process, which is threatened by disruptive medical events. Making the "right" decision is difficult. GPs feel uncertain about their own role and responsibility in deciding and negotiating the final step to life closure.
authors.affiliation: a Department of Family Medicine and Primary Health Care , Ghent University , Belgium ;
authors.forename: Maria
authors.initials: M
authors.lastname: Sercu
authors.affiliation: b Veerle Van Renterghem , Kalestraat 25 , 9940 Evergem , Belgium.
authors.forename: Veerle Van
authors.initials: VV
authors.lastname: Renterghem
authors.affiliation: a Department of Family Medicine and Primary Health Care , Ghent University , Belgium ;
authors.forename: Peter
authors.initials: P
authors.lastname: Pype
authors.affiliation: a Department of Family Medicine and Primary Health Care , Ghent University , Belgium ;
authors.forename: Karolien
authors.initials: K
authors.lastname: Aelbrecht
authors.affiliation: a Department of Family Medicine and Primary Health Care , Ghent University , Belgium ;
authors.forename: Anselme
authors.initials: A
authors.lastname: Derese
authors.affiliation: a Department of Family Medicine and Primary Health Care , Ghent University , Belgium ;
authors.forename: Myriam
authors.initials: M
authors.lastname: Deveugele
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D001530:Belgium; D003657:Decision Making; D005260:Female; D058005:General Practitioners / Q000523:psychology*; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods* / Q000523:psychology; D010818:Practice Patterns, Physicians'; D011788:Quality of Life; D013727:Terminal Care / Q000379:methods* / Q000523:psychology
keywords: Belgium; decision-making; end-of-life care; family physician; general practice; general practitioner; home care; hospice care; letting go; terminal care