Abstract
The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family.
Highlights
In respiratory medicine, some of the most difficult ethical decisions involve patients with end stage of respiratory failure[1] and when therapy choices become a question of life or death.[2]
We found that the themes related to the ethical challenges dealt with the decisionmaking process of deciding which patients were to receive home mechanical ventilation (HMV) care and consideration to the patient’s and the family’s wishes
We discovered that the main challenges were closely related to the four basic principles of medical ethics: autonomy, beneficence, non-maleficence and justice.[19]
Summary
Some of the most difficult ethical decisions involve patients with end stage of respiratory failure[1] and when therapy choices become a question of life or death.[2]. Some of the classic issues include patient autonomy versus physician paternalism, beneficence and non-maleficence, withholding and withdrawing life-prolonging treatment and distributive justice.[5] The ethical challenges related to this subject are primarily described in case studies and review articles.[1,3,4,6] Empirical research on HMV focuses primarily on patients’ experience of becoming dependent on a ventilator,[7,8] their experience with health care,[9,10] meaning of life,[11] and quality of life.[12] We found some studies describing parents’ life situation.[13,14] little empirical research exists illustrating the ethical challenges in HMV. The study focuses on the ethical challenges related to the most advanced form of HMV, that is, when children and adults depend on tracheostomy, full-time ventilatory support and care to survive
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