Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis

Abstract

The special nature of amyotrophic lateral sclerosis (ALS) and tracheostomy with invasive ventilation (TIV) leads to challenges that can be difficult in two senses: not only to handle well, but also to discuss with patients and other involved stakeholders. Because of the delicate nature of interpersonal relations and communication in ALS, some of the downsides to TIV may almost take on a nature of taboo, making them difficult to raise for open discussion. Yet these ethical challenges are important to be aware of, not only for health professionals and managers but, arguably, also for patients and next of kin. They are important also for a wider professional and societal debate about whether and to whom TIV should be offered. In this paper we highlight and examine ethical challenges in TIV for ALS, with a special emphasis on those that are hard to discuss openly and that therefore might fail to be addressed. The analysis is structured by the four core principles of healthcare ethics: beneficence, nonmaleficence, respect for patient autonomy, and justice.

Respiratory support in a population-based ALS cohort: demographic, timing and survival determinants

“…Although several studies have reported that NIMV increases survival, the effect on patients' outcome of NIMV and IMV is still controversial. [3][4][5] In our series, we found that patients who underwent NIVM alone or followed by IMV had a better outcome than non-ventilated ones independently from other prognostic factors. This is true also for patients with bulbar onset, differently from previous reports.…”

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

“…4 In addition, some patients refuse to talk about therapy options or delay their decision making until it is too late. 62 , 63 As a result, family members sometimes have to make a substitute decision, for example, about mechanical ventilation. 64 Some patients try to live in the present, deny any change, do not want to think about the consequences of their illness and focus on the positive things in life.…”

Respiratorbehandling ved amyotrofisk lateral sklerose

“…Hos disse pasientene og hos pasienter som konkret ønsker livsforlengende behandling, kan det vaere aktuelt med respirator via trakeostomi. Slik behandling reiser betydelige etiske spørsmål både for pasient, familie og helsepersonell (7).…”

“…Dette gjelder saerlig dersom kognisjon og språkfunksjon også er affisert. Det er vanskelig for pasienter å vurdere livskvalitet når alternativet er død (7). Pasientene kan ha skyldfølelse overfor familiemedlemmer for den situasjonen alle befinner seg i når en pasient behandles med ventilator gjennom trakeostomi.…”