Abstract
It is one of the primary goals of medical care to secure good quality of life (QoL) while prolonging survival. This is a major challenge in severe medical conditions with a prognosis such as amyotrophic lateral sclerosis (ALS). Further, the definition of QoL and the question whether survival in this severe condition is compatible with a good QoL is a matter of subjective and culture-specific debate. Some people without neurodegenerative conditions believe that physical decline is incompatible with satisfactory QoL. Current data provide extensive evidence that psychosocial adaptation in ALS is possible, indicated by a satisfactory QoL. Thus, there is no fatalistic link of loss of QoL when physical health declines. There are intrinsic and extrinsic factors that have been shown to successfully facilitate and secure QoL in ALS which will be reviewed in the following article following the four ethical principles (1) Beneficence, (2) Non-maleficence, (3) Autonomy and (4) Justice, which are regarded as key elements of patient centered medical care according to Beauchamp and Childress. This is a JPND-funded work to summarize findings of the project NEEDSinALS (www.NEEDSinALS.com) which highlights subjective perspectives and preferences in medical decision making in ALS.
Highlights
Reviewed by: Anne Hogden, University of Tasmania, Australia Foteini Christidi, National and Kapodistrian University of Athens Medical School, Greece
It is one of the primary goals of medical care to secure good quality of life (QoL) while prolonging survival. This is a major challenge in severe medical conditions with a prognosis such as amyotrophic lateral sclerosis (ALS)
There are intrinsic and extrinsic factors that have been shown to successfully facilitate and secure QoL in ALS which will be reviewed in the following article following the four ethical principles [1] Beneficence, [2] Non-maleficence, [3] Autonomy and [4] Justice, which are regarded as key elements of patient centered medical care according to Beauchamp and Childress
Summary
Amyotrophic lateral sclerosis (ALS) is among the most devastating neurological conditions: patients lose the ability to speak, to walk and eventually to breathe. As physical health declines in ALS and mobility becomes heavily restricted, these QoL measures provide evidence for low QoL in ALS by the nature of the underlying concept These clinimetric endpoints are increasingly considered overly reductionistic [10] as they include aspects, which are no longer relevant or are out of range of an immobile patient, e.g., physical activity [11]; patients often prefer more subjective scales of QoL as these better capture their emotional state of well-being (Table 1). Apart from these extrinsic factors, QoL in serious illness is highly depending on intrinsic factors, such as resilience which is a general characteristics addressing the capacity to recover quickly from difficulties [45]. Many years of research about adapting to and living with chronic diseases suggest that mindfulness in the sense of accepting the circumstances which cannot be changed without judgement and focus on the present [47] may reduce the negative psychological impact of the illness [48, 49]
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