Medical communication and decision-making about assisted hydration in the last days of life: A qualitative study of doctors experienced with end of life care

Abstract

Background: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. Aim: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. Design: Qualitative study involving framework analysis of data from semi-structured interviews. Setting/participants: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. Results: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. Conclusions: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care.

Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review

“…In fact, clinical scales often include eating and drinking as sentinel acts that signal EOL (e.g., the Palliative Performance Scale [ 8 ]), and disinterest in eating and drinking can be confounded as a sign of depression or apathy. Instead, HCPs monitor clinical signs and work with residents and families to make complex decisions about nutrition at EOL [ 9 ]. With a high prevalence of dementia in LTC and a high proportion of LTC residents rated as cognitively impaired [ 10 ], capacity can be limited, and decision-making about nutrition care falls to substitute decision-makers (often family members), which can be very stressful [ 3 , 6 , 7 , 11 , 12 , 13 ].…”

“…In terms of the clinical management of EOL, decisions about artificial nutrition create more ethical dilemmas than other treatments, including artificial hydration and antibiotic therapy [ 17 ]. Yet, discussion about nutrition and hydration decisions is often not germane to care, and evidence suggests that HCPs do not consistently involve residents and families in these important healthcare decisions [ 9 ].…”

The experiences of family members witnessing the diminishing drinking of a dying relative in hospital: A narrative inquiry

“…13 Broader literature has considered professionals' communication with patients and family members about declining oral intake 14 and clinically assisted hydration. [15][16][17][18] The latter provides some evidence that attitudes towards clinically assisted hydration are rooted in cultural and religious beliefs. [16][17][18] An espoused aim of palliative care is to improve quality of life for dying people and those close to them.…”

Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care—A qualitative study

“…whether artificial infusions would relieve thirst. A qualitative study among physicians found that they experienced fixed positive attitudes regarding the non‐provision of assisted hydration to terminally ill patients among hospice practitioners (Kingdon et al, 2022). ESPEN guideline (Druml et al, 2016) clearly state (Statement 20) that: ‘dryness of the mouth and thirst should first be counteracted by nursing measures such as lip care (cleaning and moistening the lips) and mouth care with mouthwash, as well as repeated provision of small amounts of fluids.…”