Response to Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability.

This report, signed by >170 scholars, clinicians, and researchers in palliative care and related fields, refutes the claims made by the previously published Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability. That report attempted to argue that structural vulnerability was not a concern in the provision of assisted dying (AD) by a selective review of evidence in medical literature and population studies. It claimed that palliative care has its own safety concerns, and that "misuse" of palliative care led to reports of wrongful death. We and our signatories do not feel that the conclusions reached are supported by the evidence provided in the contested report. The latter concluded that the logical policy response would be to address the root causes of structural vulnerability rather than restrict access to AD. Our report, endorsed by an international community of palliative care professionals, believes that public policy should aim to reduce structural vulnerability and, at the same time, respond to evidence-based cautions about AD given the potential harm.

Electrophysiological evidence of sustained attention to music among conscious participants and unresponsive hospice patients at the end of life.

OBJECTIVE: To characterize electrophysiological activity, and likely neural sources of that activity, associated with listening to music in both healthy participants and in a small group of hospice patients both when responsive and when unresponsive hours before death. METHODS: Young, healthy participants (N = 22) were asked to attend to (Active condition) and to ignore (Passive condition) brief (6 s) music excerpts. A smaller group (N = 13) of hospice patients was asked to attend to the same musical excerpts (Active condition only), both when they were responsive (N = 8) and again when they became unresponsive (N = 4) only hours before death. EEG-derived event-related spectral perturbations (ERSPs) to music stimuli, and their approximate neural sources, were computed for each individual in both groups. RESULTS: In the healthy participants, alpha-band ERSP during the music excerpts in a group-level analysis was significantly lower in posterio-parietal brain areas in the Active condition than in the Passive condition (event-related desynchronization, ERD). Moreover, in an analysis of individual ERSP data, most (18 of 22 or 84%) healthy participants showed meaningful sustained (4 or more seconds) alpha-band suppression in one or more posterio-parietal brain areas when they were asked to attend to the music, whereas far fewer healthy participants (only 7 of 19 or 37%) generated the same response when asked to ignore the music, indicating that posterio-parietal alpha-band ERD could be a useful marker of music listening. Similarly, 75% of eight responsive hospice patients, and 100% of four unresponsive hospice patients showed sustained posterio-parietal alpha-band suppression when asked to attend to the music, indicating that they could be listening to the music covertly even when overtly unresponsive. CONCLUSIONS: Some (but likely not all, as other patients will vary from those we studied) unresponsive patients at the end of life might be able to listen to music, despite being unable to overtly indicate their awareness. SIGNIFICANCE: Music stimulation may be a promising way to engage unresponsive patients.

Resting state network activation and functional connectivity in the dying brain.

OBJECTIVE: To characterize electrophysiological functional connectivity within both the default mode network (DMN) and the task-positive network (TPN) among a small group of unresponsive hospice patients at the end of life. METHODS: EEG recordings from resting state were analysed to identify brain regions in the DMN and TPN of 30 young, healthy controls, and of 9 hospice patients when they were responsive and of 5 patients when they became unresponsive during the last hours of life. RESULTS: The prevalence of activation and connectivity within the DMN was similar across all participant groups. Overall functional connectivity was higher between brain regions within the DMN than between brain regions within TPN for all participant groups. The number of functional connections within the DMN, however, was greater than those within the TPN among controls and responsive hospice patients but not among unresponsive hospice patients. CONCLUSIONS: Some unresponsive patients may have the functional architecture to support internally-oriented thought at the end of life. Resting state default mode - task positive network anticorrelations may be present among some unresponsive hospice patients. SIGNIFICANCE: Some unresponsive end of life patients may be able to mind-wander. Implications for internally-oriented awareness at the end of life are discussed.

Electrophysiological evidence of preserved hearing at the end of life.

This study attempts to answer the question: "Is hearing the last to go?" We present evidence of hearing among unresponsive actively dying hospice patients. Individual ERP (MMN, P3a, and P3b) responses to deviations in auditory patterns are reported for conscious young, healthy control participants, as well as for hospice patients, both when the latter were conscious, and again when they became unresponsive to their environment. Whereas the MMN (and perhaps too the P3a) is considered an automatic response to auditory irregularities, the P3b is associated with conscious detection of oddball targets. All control participants, and most responsive hospice patients, evidenced a "local" effect (either a MMN, a P3a, or both) and some a "global" effect (P3b) to deviations in tone, or deviations in auditory pattern. Importantly, most unresponsive patients showed evidence of MMN responses to tone changes, and some showed a P3a or P3b response to either tone or pattern changes. Thus, their auditory systems were responding similarly to those of young, healthy controls just hours from end of life. Hearing may indeed be one of the last senses to lose function as humans die.

Hastened death due to disease burden and distress that has not received timely, quality palliative care is a medical error.

All healthcare services strive to achieve the six factors of quality health care - safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death. Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory - a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered. We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed. We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.

Opioid-Related Harms: Simplistic Solutions to the Crisis Ineffective and Cause Collateral Damage.

The narrative of the opioid crisis is that ill-informed and careless prescribing by physicians has led to increases in opioid-related harms including overdose deaths. Focusing on reducing the access to prescribed opioids without treating substance use disorder has led to increases in use of heroin and illicitly produced fentanyl. Overall prescribing of opioids has declined causing collateral damage to those who use opioids appropriately to reduce pain and improve function. The complexity of this issue requires a change in focus and broad changes in society's approach to substance abuse and mental health.

Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members.

BACKGROUND: This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care. METHODS: Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care. RESULTS: Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die. CONCLUSION: While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.