Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK

Abstract

BackgroundVentilatory support has benefits including prolonging survival for respiratory failure in motor neurone disease (MND). At some point some patients may wish to stop the intervention. The National Institute of Health and Care Excellence (NICE) guidance recommends research is needed on ventilation withdrawal. There is little literature focusing on the issues doctors encounter when withdrawing ventilation at the request of a patient.AimTo identify and explore with doctors the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND.MethodA retrospective thematic analysis of interviews of 24 doctors (including palliative care, respiratory, neurology and general practice) regarding their experiences with withdrawal of ventilation support from patients with MND.ResultsRespondents found withdrawal of ventilation at the request of patients with MND to pose legal, ethical and moral challenges in five themes: ethical and legal rights to withdrawal from treatment; discussions with family; discussions with colleagues; experiences of legal advice; issues contributing to ethical complexity. Though clear about the legality of withdrawal of treatment in theory, the practice led to ethical and moral uncertainty and mixed feelings. Many respondents had experienced negative reactions from other healthcare professionals when these colleagues were unclear of the distinction between palliation of symptoms, withdrawal of treatment and assisted death.ConclusionsLegal, ethical and practical guidance is needed for professionals who support a patient with MND who wishes to withdraw from ventilation. Open discussion of the ethical challenges is needed as well as education and support for professionals.

Clinical characteristics and course of dying in patients with amyotrophic lateral sclerosis withdrawing from long-term ventilation

“…In the literature on WLTV in ALS, the focus had been on patients with TIV (15,18). Only recently, systematic data on WLTV in both NIV and TIV have been obtained (11,17). Rather than capturing the whole range of palliative concepts, our study compared ASC and CDS as being two distinct palliative approaches in WLTV (17).…”

“…The underlying reasons for the steady rise in life-prolonging treatment with NIV or TIV are improved home ventilation, availability of electronic communication systems and the availability of online participatory activities (7,8). Both forms of long-term ventilation can be associated with a substantial psychosocial strain for the patients and caregivers resulting in the wish of the patient to withdraw from ventilation therapy (9)(10)(11). Typical factors contributing to the withdrawal of long-term ventilation (WLTV) are the burden of care, social deprivation or loss of the ability to communicate through an ALS-related ophthalmoplegia and locked-in syndrome (11)(12)(13)(14).…”

“…Both forms of long-term ventilation can be associated with a substantial psychosocial strain for the patients and caregivers resulting in the wish of the patient to withdraw from ventilation therapy (9)(10)(11). Typical factors contributing to the withdrawal of long-term ventilation (WLTV) are the burden of care, social deprivation or loss of the ability to communicate through an ALS-related ophthalmoplegia and locked-in syndrome (11)(12)(13)(14). Despite the increasing frequency of WLTV, there are still very few systematic investigations on the limitation or discontinuation of ventilation therapy in ALS patients (14)(15)(16).…”

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

“…Health professionals in ALS care can experience varying degrees of stress related to their clinical work,94 and the emotional burden encountered by health care professionals caring for people with ALS can be severe 55. Feelings of stress and anxiety can arise for physicians while delivering the diagnosis and prognosis,72 whereas withdrawal of treatments can pose ethical and psychological dilemmas for health care professionals who provide end-of-life care 95,96. In an Australian-based study,72 70% of neurologists surveyed found communicating the diagnosis of ALS “very to somewhat difficult,” whereas 43% of them found responding to patients’ and family members’ reaction to the disclosure “very to somewhat difficult.” Sixty-five percent of neurologists experienced “high to moderate” stress and anxiety during the disclosure.…”

Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals

“…The Guidance has been endorsed by the Motor Neurone Disease Association, the Royal College of Nursing, the Royal College of Physicians of London, the Royal College of General Practitioners and Hospice UK, and is consistent with General Medical Council (GMC) standards of good practice,2 and is compatible with coronial law and principles. It has resulted from original research from Faull et al 3 in Leicester which explored the experiences of families and healthcare professionals and found that while there were examples of good practice, there was considerable variation in care and evidence of poor outcomes for patients, families and the professionals involved 4 5…”