Bringing Life to Death: The Need for Honest, Compassionate, and Effective End-of-Life Conversations

Abstract

Conversations about death and dying are a crucial part of all medical care and are particularly relevant in the field of oncology. Patients express a desire to have discussions about goals of care, and many patients have thought about their end-of-life (EOL) wishes but have not had an opportunity to openly talk with care providers about this. Deficiencies in medical training, lack of confidence, limited time, and cultural barriers all contribute to the paucity of these important discussions. Although physicians are often expected to lead these conversations, nurses and nurse practitioners also play a vital role in the identification of opportunities to address EOL goals and should be a resource for the care team in facilitating EOL conversations at all points on the care continuum. Public engagement is paramount in normalizing conversations about death and dying, and the health care system needs to partner with public health agencies and private groups to open dialogues about EOL. Providers at all levels need improved education in having these difficult but essential conversations.

Discordance and concordance on perception of quality care at end of life between older patients, caregivers and clinicians: a scoping review

“…Even in more recent times, the reluctance to hold EOL conversations, and discomfort in engaging in them either with clinicians or among family members despite identified need continue to be reported [63], particularly in relation to patient preference for place of death and family readiness to take on that responsibility. This suggests the need for mass education strategies to normalise the conversation such as via social media channels [64] and information about alternative pathways alongside the potential burden on informal caregivers trying to honour patients' wishes. Further engagement of relevant staff in initiating the compassionate EOL discussions following targeted training has also been attempted [65], and while intention to change practice is reported by clinicians, hard evidence of actual impact is yet to be demonstrated.…”

“From the Time You Start With them Until the Lord Calls You”: A Qualitative Study on the Experiences and Expectations of People Living with Advanced Cancer Interacting With Palliative Care Services in Uganda, Nigeria and Zimbabwe

“…Palliative care provision across low-resource settings may be well placed to explore approaches that draw on the expertise and knowledge of both health workers and community volunteers who are embedded into and provide important roles in the delivery of palliative care services in community settings [51,52]. Public engagement is a critical component of normalising conversations about death and dying, with a need for public health, governmental, community-based, faith-based, and consumer organizations to provide a role in the provision of fact-based information about care options and to discourage misinformation [53]. There is a need for future research to determine how public engagement can be achieved effectively to reduce the stigma associated with conditions including cancer [54], including identifying optimal ways in which different aspects of the palliative care workforce can contribute.…”

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

“…Contemporary Western societal approaches to death have been criticised for marginalising death and characterising it as a “forbidden subject” [ 1 ]. This has hindered open conversations about death and End of Life Care (EoLC), despite UK research and policy [ 2 – 8 ] mandating the importance of effective conversations about the end of life [ 8 – 10 ]. Cox and colleagues’[ 11 ] systematic review focusing on public attitudes towards death and dying in the UK has highlighted key concerns of fear of the unknown, experiencing distress, and becoming a burden to the family.…”