“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.Aim To explore the GP’s perspective on life-preserving versus “letting go” decision-making in EoL home care.Design 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 PointsA 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.

Rethinking End-of-Life Care and Palliative Care: Learning From the Illness Trajectories and Lived Experiences of Terminally Ill Patients and Their Family Carers

“…First of all, we were aware that the terms life-preserving and palliative are not necessarily opposites because many specific medical treatments and interventions address both symptoms and survival, therefore falling into both categories. Second, through a previous study on EoL decision-making (Sercu et al, 2015) as well as through our analysis process here, we became aware that the deficiency of the term palliative care was partly rooted in the duality of palliative care itself: on one hand life-affirming, which allows for blending life-preserving and symptom-comforting aspects to preserve the patient’s life quality and function for as long as possible, versus death-acknowledging and planning for the patient’s inevitable death on the other. We therefore introduced the concept of EoL medical care as encompassing three palliative care modalities, each with their own degree of palliative intent and each with a different blend of life-preserving and symptom-comforting aspects .…”

“…It is triggered by symptoms or complications (e.g., intestinal obstruction) or by the detection of asymptomatic threats via diagnostic monitoring (e.g., new metastases). In each case, one is confronted with the dilemma of which specific intervention to undertake and to establish its intent (Sercu et al, 2015; Weissman, 2004). The fact that many interventions have both comforting and life-preserving properties complicates the decision.…”

Planejamento de cuidados paliativos para idosos

“…Quando Sercu et al 9 fala que os médicos se sentem inseguros quanto ao seu papel e consideram normal a oscilação entre paliação e preservação da vida, é porque desconhecem o conceito, as finalidades e princípios de elegibilidade dos CP. Os médicos assistentes reconhecem a necessidade de obter auxílio das equipes especializadas, mas independente da existência de uma equipe especializada em Cuidados Paliativos na instituição, raramente solicitam o envolvimento dos serviços psicológicos, espirituais e sociais 9 .…”

“…As dificuldades encontradas por Sercu et al 9 , Phongtankuel et al 8 , Albers et al 24 , Carduff et al 14 , Midtbust et al 25 e Urquhart et al 26 , relacionadas aos profissionais foram: preocupação maior com a pós identificação em detrimento de identificar o paciente elegível, o conhecimento e a compreensão limitados, déficit na relação entre disciplinas, falta de conhecimento sobre a prescrição de medicamentos paliativos agudos, restrição de tempo, pressão no leito; racionalidade econômica, de tempo e de pessoal, que levam à falta de continuidade dos cuidados; falta de esclarecimento do prognóstico da doença, dificuldade para controlar comorbidades, sinais e sintomas, levando até à desistência de clínicos em oferecerem CP.…”

“…O estudo de García et al 17 apontou que os profissionais não incentivam a participação dos pacientes na tomada de decisão nem discutem sua implementação, apesar de reconhecerem sua necessidade. Segundo Sercu et al 9 , a tomada de decisão em cuidados paliativos sofre influência direta do (des) preparo profissional, as consequências no findar desse processo se refletem nos conflitos mal resolvidos e nos desejos dos pacientes pouco ou não debatidos. Dessa afirmação, parte a necessidade levantada por Sanchez et al 28 , de desenvolver diretrizes para os processos de tomada de decisão e planejamento avançado dos cuidados de fim de vida.…”