Formal ventilation patient education for ALS predicts real-life choices

Abstract

Our objective was to evaluate a single-session, hands-on education programme on mechanical ventilation for ALS patients and caregivers in terms of knowledge, change in affect and to determine whether ventilator decisions made after the education sessions predict those made later in life. Questionnaires were administered to 26 patients and 26 caregivers on four separate occasions. The questionnaires assessed knowledge of ventilatory support, feedback on the nature of the education programme, as well as self-reported emotional well-being. All patients were followed until their death or until initiation of invasive ventilation. Both groups demonstrated significant improvements in knowledge as a result of the education session which was retained after one month. There was no change in patient or caregiver reports' self-reported emotional well-being. The choices of ventilatory support expressed at one month (T4) accurately predicted the real-life clinical choices made by 76% of patients. Any difference resulted from choosing palliative care. Hands-on patient and caregiver education results in improved knowledge, assists in decision-making with respect to ventilatory support, and is not associated with a worsening of affect. It also provides for an accurate prediction of real-life choices and avoids undesired life support interventions and critical care admissions.

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

“…Proactive team approaches have the potential to prevent crisis situations and costly interventions that may result from delays in decision-making. 31,34,76,77 However, the objective of a proactive, patient-centered, and collaborative multidisciplinary team is compromised by the impact of ALS on the patient and health system limitations. The challenge facing health professionals is how to bridge this gap.…”

Stability of End-of-Life Preferences

“…This approach could introduce changes in stated preferences (or possibly stability of preferences) that would not be observed if stated preferences or real decisions were monitored longitudinally in real-world settings. The 1 study 14 in our review that evaluated trajectories of preferences under natural conditions found that the choices made by patients with amyotrophic lateral sclerosis to receive ventilatory support following an educational program on mechanical ventilation accurately predicted the clinical choices made by 76% of patients. The stability of preferences seemed to be greater among studies examining sicker populations (Figure 2), suggesting that for more seriously ill individuals, the questions may be more relevant, be contemplated more carefully, or may more closely respond to their current needs.…”

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

“…Against this background, patients make many decisions concerning symptom management and quality of life throughout the course of the disease. Decisions may include choices between invasive and noninvasive ventilation,7–9 insertion of gastrostomy to facilitate adequate nutrition and hydration,10,11 choices of mobility and communication equipment as independence decreases,12,13 completion of advance care plans anticipating future needs,14 involvement with home-based or inpatient palliative care services,15 and preferences for end-of-life care 16,17…”

“…Health professionals facilitate patient decision-making by providing decision-specific education,9,11,31 maintaining effective communication with patients and carers,17,24,26 and supporting patient autonomy 8. However, well-timed decision-making remains a challenge for health professionals and patients 17,37,38.…”