The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals in nursing (...) homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals in nursing (...) homes. This is somewhat puzzling given that considerable resources have been devoted to bringing public attention to this problem, we have the knowledge and expertise to provide such care, and we have a government-financed benefit that covers this type of care - the Medicare hospice benefit.While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting. (shrink)

On 24 July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion. Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. Life support was subsequently withdrawn and Charlie died on 28 July 2017.Box 1 ### Case summary and timeline21–23 Charlie Gard was born at full term, apparently healthy, in August 2016. At a few weeks of age his parents (...) noticed early signs of muscle weakness. At 2 months of age, he was admitted to Great Ormond Street Hospital with poor feeding, failure to thrive and respiratory failure. He was admitted to intensive care, where investigations led to the diagnosis of a rare severe mitochondrial disorder – infantile onset encephalomyopathic mitochondrial DNA depletion syndrome. The specific genetic form of MDDS in Charlie Gard had previously been reported in approximately 15 infants, with typical clinical features including early onset, rapid progression and death in infancy.24 By that point, Charlie was paralysed and unable to breathe without respiratory support. He was found to have congenital deafness, and his heart, liver and kidneys were affected by the disorder. Doctors felt that Charlie’s prognosis was extremely poor. In early 2017, Charlie’s parents identified an experimental treatment, previously used in a different form of MDDS, which they hoped might benefit Charlie. In mouse models of a myopathic form of MDDS, early supplementation with deoxypryrimidine nucleosides apparently bypasses the genetic defect and leads to a reduction in the biochemical defect and in the severity of the clinical phenotype.25 26 Doctors at GOSH initially planned to use nucleoside treatment in Charlie, but in January he developed evidence of electrical seizures, and clinicians became convinced that treatment, both continued intensive care and the requested …. (shrink)

End-of-life care became an important issue in the late 1960s and early 1970s. It was in great part driven by complaints about the care of the dying: lack of patient autonomy, indifferent or insensitive physicians, and inadequate pain control. The main task of those who worked to improve the situation centered on changing each of those variables, assuming that would do the job. But it has worked to a moderate extent only and the problem is not fully solved. The main (...) omission has been a failure to confront the medical enterprise itself, which believes in endless progress and conducts a war against death. Only a change in those underlying values can bring about further significant change. (shrink)

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal knowledge (...) on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care. (shrink)