Withdrawal of Assisted Ventilation at the Patient’s Request in MND/ALS: A Retrospective Exploration of the Ethical and Legal Issues Concerning Relatives, Nurses and Allied Health Care Professionals

Abstract

Background There is little literature focusing on the issues relatives and health professionals encounter when withdrawing assisted ventilation at the request of a patient with MND/ALS. Aim To explore with relatives, nurses and allied health professionals the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND/ALS. Method A retrospective qualitative interview study with 17 family members and 26 professionals. Data was analysed thematically and compared with results from a previous study with doctors. Results The events surrounding ventilation withdrawal were extraordinarily memorable for both HCPs and family members with clear recall of explicit details, even from years previously. The events had had a profound and lasting effect due to the emotional intensity of the experiences. Withdrawal of ventilation posed legal, ethical and moral challenges for relatives and health are professionals. Relatives looked to health care professionals for knowledge, guidance and reassurance on these issues, worried about how the withdrawal would be perceived by others, and found professional ignorance and disagreement distressing. Many health care professionals lacked theoretical knowledge and confidence on the legal and ethical considerations of withdrawal and struggled morally knowing the outcome of the withdrawal would be death. Health care professionals also worried about the perception of others of their involvement, which in turn influenced their practice. There was a lack of consistency in understanding across professions, and professionals often felt uncomfortable and anxious Conclusions Legal, ethical and practical guidance is needed and open discussion of the ethical challenges as well as education and support for health care professionals and relatives would improve the experience of all involved.

The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review

“…The review identified 31 documents (see Table S1 ) from those 19 papers reporting empirical research, of which 11 used quantitative methods [ 11 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ] and 8 used qualitative methods [ 13 , 29 , 47 , 48 , 49 , 50 , 51 , 52 ]. The documents which did not report empirical research studies presented discussions based on clinical case examples (n = 6) [ 17 , 18 , 53 , 54 , 55 , 56 ] or provided reviews or opinion pieces (n = 4) [ 57 , 58 , 59 , 60 ].…”

“…Of the 19 empirical papers included, a range of study designs and methods were reported (see Figure 2 ). These were primarily interview studies (n = 10) [ 13 , 29 , 37 , 38 , 47 , 48 , 49 , 50 , 51 , 52 ]. Two used a more structured approach to the interviews [ 37 , 38 ].…”

“…Of the 10 studies employing interview methods, 4 had a focus on patient and/or family caregiver perspectives [ 37 , 38 , 47 , 50 ], 3 had a focus on the views of healthcare professionals [ 29 , 48 , 49 ] and 3 reported findings from both healthcare professionals and family caregivers [ 13 , 51 , 52 ].…”

“…Findings show (see Figure 4 ) that 11 papers focused on NIV [ 13 , 18 , 38 , 42 , 44 , 49 , 52 , 54 , 57 , 58 , 59 ], 7 focused on IV [ 11 , 17 , 45 , 53 , 55 , 56 , 60 ] and a further 13 included both [ 25 , 29 , 37 , 39 , 40 , 41 , 43 , 46 , 47 , 48 , 50 , 51 , 61 ]. However, those patients on ventilation were often only part of the population included, and for those papers covering both forms of ventilation, it was not always possible to distinguish these patients in the findings.…”

“…A large proportion of the articles included references to advance planning (23/31). This theme of advance planning included mentions of Advance Decisions to Refuse Treatment and Do Not Attempt Resuscitation forms, expressed wishes recorded in medical notes, advance directives, living wills and discussions about end of life care [ 11 , 13 , 17 , 18 , 25 , 29 , 37 , 39 , 41 , 44 , 45 , 46 , 48 , 49 , 51 , 52 , 53 , 55 , 56 , 57 , 58 , 59 , 60 , 61 ]. The study by Moss et al suggested that the uptake of some form of advance planning is high for those with MND, with 79% of the 50 patients using ventilation in their study having left directives in place.…”