The first casualty of COVID-19 for patients nearing death was human dignity: Understanding the experience of palliative care patients during the COVID-19 pandemic.

The COVID-19 pandemic changed the way people lived, but also the way they died. It accentuated the physical, psychological, social, and spiritual vulnerabilities of patients approaching death. This study explored the lived experience of palliative inpatients during the pandemic. We conducted interviews with 22 palliative inpatients registered in a Canadian urban palliative care program, aimed to uncover how the pandemic impacted participants' experiences of approaching end-of-life. The reflexive thematic analysis revealed 6 themes: putting off going into hospital, the influence of the pandemic on hospital experience, maintaining dignity in care, emotional impact of nearing death, making sense of end-of-life circumstances and coping with end-of-life. Findings highlight the vulnerability of patients approaching death, and how that was accentuated during the pandemic. Findings reveal how the pandemic strained, threatened, and undermined human connectedness. These lived experiences of palliative inpatients offer guidance for future pandemic planning and strategies for providing optimal palliative care.

"It took so much of the humanness away": Health care professional experiences providing care to dying patients during COVID-19.

COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020-July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

Validation of quality indicators for end-of-life communication: results of a multicentre survey.

BACKGROUND: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making. METHODS: We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients' expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores. RESULTS: We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%-44%) and the lowest had a score of 18% (11%-25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53). INTERPRETATION: Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855.

Discordance between patients' stated values and treatment preferences for end-of-life care: results of a multicentre survey.

BACKGROUND: Medical orders for the use of life-supports should be informed by patients' values and treatment preferences. The purpose of this study was to explore the internal consistency of patients' (or their family members') stated values, and the relationship between these values and expressed preferences. METHODS: We conducted a prospective study in 12 acute care hospitals in Canada. We administered a questionnaire to elderly patients and their family members about their values related to end-of-life (EOL) care, treatment preferences and decisional conflict. RESULTS: Of 513 patients and 366 family members approached, 278 patients (54%) and 225 family members (61%) consented to participate. Participants' most important stated values were to be comfortable and suffer as little as possible, to have more time with family, to avoid being attached to machines and tubes and that death not be prolonged. The least important stated value was that life be preserved. Based on prespecified expected associations between the various values measured, there were inconsistencies in participants' expressed value statements. With few exceptions, participants' expressed values were not associated with expected corresponding treatment preferences. Of the 109 (40%) patients and 95 (42%) family members who had made decisions about use of life-supports, 68 (56%) patients and 60 (59%) family members had decisional conflict. CONCLUSIONS: Decision-making regarding medical treatments at the EOL is inadequate. To reduce decisional conflict, patients and their families need more support to clarify their values and ensure that their preferences are grounded in adequate understanding of their illness and treatment options. TRIAL REGISTRATION NUMBER: NCT01362855.