Subject(s)
Continuous Positive Airway Pressure/instrumentation , Noninvasive Ventilation/instrumentation , Safety-Based Medical Device Withdrawals/standards , Ventilators, Mechanical/standards , Continuous Positive Airway Pressure/adverse effects , Continuous Positive Airway Pressure/ethics , Continuous Positive Airway Pressure/standards , Humans , Informed Consent/ethics , Informed Consent/standards , Noninvasive Ventilation/adverse effects , Noninvasive Ventilation/ethics , Noninvasive Ventilation/standards , Patient Participation/methods , Patient-Centered Care/ethics , Patient-Centered Care/methods , Patient-Centered Care/standards , Practice Guidelines as Topic , Practice Patterns, Physicians'/ethics , Practice Patterns, Physicians'/standards , Safety-Based Medical Device Withdrawals/ethics , Societies, Medical/ethics , Societies, Medical/standards , United States , Ventilators, Mechanical/adverse effects , Ventilators, Mechanical/ethicsSubject(s)
Amyotrophic Lateral Sclerosis , Noninvasive Ventilation/ethics , Physician-Patient Relations/ethics , Quality of Life , Amyotrophic Lateral Sclerosis/diagnosis , Amyotrophic Lateral Sclerosis/therapy , Decision Making/ethics , France , Gastrostomy/ethics , Humans , Prognosis , Tracheostomy/ethicsABSTRACT
BACKGROUND: Non-invasive ventilation (NIV) is beneficial for respiratory failure in motor neurone disease (MND) but some patients may wish to stop the intervention. Guidance from the National Institute for Health and Care Excellence recommends that research is needed on NIV withdrawal. There is little in the literature focusing on the issues doctors face when withdrawing NIV in this group. AIM: To identify issues and challenges that palliative medicine doctors encounter in relation to the withdrawal of NIV in MND patients. METHOD: An electronic questionnaire was sent to members of the Association of Palliative Medicine of Great Britain and Ireland. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal. RESULTS: 76 doctors responding had been directly involved in withdrawal of NIV at the request of a patient with MND. A high percentage rated the practical, ethical and emotional challenges as 7 or more on a 0-10 scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest many palliative care doctors feel significant personal impact. CONCLUSIONS: The withdrawal of NIV in patients with MND appears to pose considerable challenges to palliative medicine doctors; emotionally, practically and to a lesser extent ethically. Development of guidelines and a clear ethical statement of conduct may help but emotional issues appear more complex.
Subject(s)
Motor Neuron Disease/complications , Noninvasive Ventilation/methods , Palliative Care/methods , Respiratory Insufficiency/therapy , Treatment Refusal/ethics , Withholding Treatment/ethics , Attitude of Health Personnel , Humans , Motor Neuron Disease/psychology , Noninvasive Ventilation/ethics , Noninvasive Ventilation/psychology , Palliative Care/ethics , Palliative Care/psychology , Palliative Medicine/ethics , Palliative Medicine/methods , Physicians/ethics , Physicians/psychology , Respiratory Insufficiency/etiology , Respiratory Insufficiency/psychology , Surveys and Questionnaires , Terminal Care/ethics , Terminal Care/methods , Terminal Care/psychology , Treatment Refusal/psychology , United KingdomABSTRACT
QUESTION UNDER STUDY: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with a poor prognosis. Survival and quality of life of ALS patients have improved through the implementation of multidisciplinary approaches, the use of percutaneous gastrostomy and of noninvasive (NIV) or invasive ventilation. The question of whether or not to propose invasive ventilation (by tracheostomy: TPPV) to ALS patients remains a matter of debate. METHODS: The study reviews the medical literature, the practice in three Swiss and two large French ALS expert centres and reports the results of a workgroup on invasive ventilation in ALS. RESULTS: Improved management of secretions and use of different interfaces allows NIV to be used 24-hours-a-day for prolonged periods, thus avoiding TPPV in many cases. TPPV is frequently initiated in emergency situations with lack of prior informed consent. TPPV appears associated with a lesser quality of life and a higher risk of institutionalisation than NIV. The high burden placed on caregivers who manage ALS patients is a major problem with a clear impact on their quality of life. CONCLUSIONS: Current practice in Switzerland and France tends to discourage the use of TPPV in ALS. Fear of a "locked-in syndrome", the high burden placed on caregivers, and unmasking cognitive disorders occurring in the evolution of ALS are some of the caveats when considering TPPV. Most decisions about TPPV are taken in emergency situations in the absence of advance directives. One exception is that of young motivated patients with predominantly bulbar disease who "fail" NIV.
