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.

Managing Pruritus in Advanced Chronic Disease.

Even though pruritus affects a significant number of people with chronic disease, it is rarely adequately treated. Drug therapies often rely on antihistamines, which have not shown to be beneficial in systemic pruritus. Hydroxyzine is frequently used to treat pruritus associated with kidney failure. Since Canada's sole manufacturer of hydroxyzine is no longer making this product, this is an ideal time to review the mechanisms of itch in advanced organ failure and the specific therapies that give relief. Although there is literature describing itch in patients with cancer, this article is limited to pathogenesis and treatment of systemic itch secondary to chronic, noncancer diseases. We summarize recent systematic reviews, although the studies included in these reviews are often small, and mostly cohort studies.

Family members' perceptions of end-of-life care across diverse locations of care.

BACKGROUND: The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life. METHODS: A previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia. RESULTS: Bereaved family members had many unmet needs for information about the patient's changing condition, the process of dying, how symptoms would be managed and what to do at the time of death. In addition, many bereaved relatives felt that the patient or resident had an unmet need for emotional support and that their own emotional needs were not addressed adequately. The last place of care had the most significant effect on all of these variables, with acute care and residential care having the most unmet needs. Hospice had the fewest unmet needs, followed by the palliative and the intensive care units. CONCLUSIONS: We discuss these findings in relation to overall satisfaction with care, focus on individual, ethno-cultural and diversity issues, information and decision-making, symptom management and attending to the family. We conclude by offering possible practices address the end-of-life needs of patients and family members.

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.

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 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.

Hospice residents' interest in complementary and alternative medicine (CAM) at end of life: a pilot study in hospice residences in British Columbia.

While complementary and alternative medicine (CAM) can improve quality of life at end of life, little research exists on hospice residents' interest in using and sharing CAM experiences with a partner/friend/other family member. A pilot study conducted in British Columbia, Canada explored the extent of hospice residents' interest and openness to CAM use. A convenience sample of 48 hospice residents from 9 hospice sites completed questionnaire-based interviews. The majority of participants were Caucasian women over 60 years old. 81 percent expressed interest in receiving CAM; 79 percent used CAM prior to entering the hospice setting. 50 percent of those interested in using CAM felt their partner/friend/other family member would also be interested in receiving CAM, and half of that 50 percent reported personal interest in sharing the experience. Reasons reported for CAM interest were to enhance well-being, relaxation, and for pain relief. Further research could explore how resident-caregiver dyads may benefit from shared CAM experiences over the illness trajectory.

Stakeholder opinions on a transformational model of pain management in long-term care.

Pain in older adults with dementia who reside in long-term care (LTC) facilities tends to be undertreated, despite important guidelines designed to ameliorate this problem. A group of public policy and geriatric pain experts recently concluded that existing guidelines are not being implemented because they fail to take into account policy and resource realities. The group published a set of more feasible guidelines that confront these realities (e.g., a recommendation for very brief pain assessments that can be conducted by nursing staff at least weekly). We asked stakeholders to provide opinions on the possibility of implementation of these guidelines within their LTC facilities. Our results support the feasibility of, interest in, and desirability of implementation. They also support an increased role for nurse leadership in LTC pain management. These results could be used to strengthen advocacy efforts for improvement in pain management.

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.