The underrepresentation of palliative care in global guidelines for responding to infectious disease outbreaks: a systematic narrative review.

BACKGROUND: The importance of palliative care provision has been highlighted in previous humanitarian emergencies. This review aimed to examine the breadth and depth of palliative care inclusion within global guidelines for responding to infectious disease outbreaks. METHODS: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Electronic searches of MEDLINE, Embase, Cumulative Index to Nursing and Allied Health, PsychInfo and grey literature were performed. Inclusion criteria were guidelines (recommendations for clinical practice or public health policy) for responding to infectious disease outbreaks in the general adult population. Results were limited to the English language, between 1 January 2010 and 17 August 2020. Analysis of the included articles involved assessing the breadth (number of palliative care domains covered) and depth (detail with which the domains were addressed) of palliative care inclusion. RESULTS: A total of 584 articles were retrieved and 43 met the inclusion criteria. Two additional articles were identified through handsearching. There was limited inclusion of palliative care in the guidelines examined. CONCLUSIONS: There is an opportunity for the development of guidelines that include information on palliative care implementation in the context of infectious disease outbreaks in order to reduce the suffering of key vulnerable populations worldwide.

Reimagining the inpatient palliative care consult: lessons from COVID-19.

As the number of inpatients with advanced age and chronic conditions rises, so too does the need for inpatient palliative care (PC). Despite the strong evidence base for PC, less than 50% of all inpatient PC needs are met by inpatient consults. Over the past several months in epicenters of the COVID-19 pandemic, PC providers have responded to the increased need for PC services through innovative digital programs including telepalliative care programs. In this article, we explore how PC innovations during COVID-19 could transform the PC consult to address workforce shortages and expand access to PC services during and beyond the pandemic. We propose a 3-pronged strategy of bolstering inpatient telepalliative care services, expanding electronic consults, and increasing training and educational tools for providers to help meet the increased need for PC services in the future.

Palliative Renal Care and the Covid-19 Pandemic.

INTRODUCTION: Palliative care is an approach aimed at relieving suffering, controlling symptoms and seeking to improve quality of life. It must be offered in conjunction with standard treatment for any disease that threatens the continuation of life, such as a Covid-19 infection. DISCUSSION: The bioethical principles and strategies used by palliative medicine can assist nephrologists in the care of patients with renal dysfunction, who face the difficulties of isolation at the beginning and follow-up of dialysis in outpatient treatment, and those who are at risk for a more serious disease progress. Some of them: - a Shared decision making, which enables the patient and family to participate as facilitators in the systematization of the team's reasoning, in addition to respecting the principle of autonomy; - Symptom Management: which should be a priority to ensure relief of suffering even in times of social isolation; - Communication skills: making it possible to alleviate suffering in announcing bad news or complex decisions through communication techniques;; - Bereavement assistance: which in acute situations such as the pandemic, causing unexpected losses, the importance of sympathy from healthcare professionals becomes even greater. CONCLUSION: The principles of palliative care are essential to face the challenges of a planet-wide crisis, which raises human suffering in all dimensions, and which requires the construction of strategies that can keep patients assisted, comfortable and with measures proportional to their clinical condition and preferences.

Palliative Care and Hospice in the Pandemic: A Review of State Planning and Lessons Not Yet Learned.

CONTEXT: Written Crisis Standards of Care guidelines have been published federally in the United States for several decades to assisted in planning for a variety of disasters, and planning documents exist in most states. Federal and state crisis planning guidelines, both before and during the early COVID pandemic, focused on saving the most lives. Palliative care (PC) and hospice shortages were exacerbated by the COVID pandemic but recognized late and incompletely. OBJECTIVES: 1) Quantify the number of state crisis standard planning documents that include recognition of potential PC and hospice crisis needs in a pandemic. 2) Assess the range of practical plans in existing state Crisis Standards of Care plans. 3) Outline elements of recommendations from existing guidelines and literature. METHODS: Internet searches for state-based "crisis standards of care" completed and results categorized regarding PC and hospice planning as: 1) absent, 2) mentioned only in relation to critical care triage, 3) described only in general principles, 4) describing potential concrete plans to address PC and hospice needs. RESULTS: Of the 50 states and Washington, DC, 45 states have electronically available "crisis standards of care" or emergency preparedness documents; 35 of these were written or updated since 2020. Only 20 states mention any concrete aspects of planning for potential palliative care or hospice service shortages. Guidelines most often involved alternate care sites, protective equipment, and specialist resources. Visitation policy was rarely mentioned. CONCLUSIONS: Concrete planning for PC and hospice needs in state crisis planning occurs in less than half of state documents, even three years after the start of this pandemic. Failure to address these needs will result in avoidable suffering for patients in a wide range of settings. It is important to identify and address gaps before the next disaster.

The grief of loss among breast cancer patients during the COVID-19 pandemic: How can palliative care workers help?

BACKGROUND: Cancer patients suffer from different losses. Studies have focused on examining grief resulting from cancer diagnosis and grief among caregivers of cancer patients and parents who lost their child to cancer. However, there are no studies on the grief resulting from losing a loved one in cancer patients. OBJECTIVE: This study examined female breast cancer patients' grief and aimed to reveal how palliative care can help breast cancer who experience the grief of losing a loved one. METHODS: The study applied the qualitative case study design conducted with 10 women with breast cancer; their ages ranged from 47 to 54 years. Data were collected during 18 in-depth interviews by asking semi-open-closed questions. RESULTS: Thematic analysis found that losing a partner negatively affected breast cancer patients' mental health. The grief experience among breast cancer patients has many symptoms: sadness, severe anxiety, sleep disturbance, loneliness, and isolation. Results also indicated many risk factors that increase grief symptoms among breast cancer patients, such as quarantine procedures during the COVID-19 outbreak, extreme emotional attachment to a partner, guilt, self-blame, and social relations. Patients with breast cancer can face grief experienced by coping strategies such as: resorting to God, prayer, patience, and reading the Holy Qur'an. The results also emphasize the importance of integrating palliative care with treatment for breast cancer patients who experience the grief of loss. CONCLUSION: The grief of loss among breast cancer patients is a complex experience. These findings have many applied aspects that benefit planning counseling and psychological programs to increase positive coping strategies for those patients with breast cancer suffering from grief of loss disorder and provide psychological services that protect them from risk factors and reduce grief symptoms which reduce the effectiveness of cancer treatments due to the symptoms of traumatic loss of a partner. These findings also emphasize the importance of palliative care for cancer patients with complex distress.

The effect of an integrated palliative care intervention on quality of life and acute healthcare use in patients with COPD: Results of the COMPASSION cluster randomized controlled trial.

BACKGROUND: COPD causes high morbidity and mortality, emphasizing the need for palliative care. AIM: To assess the effectiveness of palliative care in patients with COPD. DESIGN: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. SETTING: Eight hospital regions in the Netherlands. PARTICIPANTS: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. RESULTS: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: -5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03-0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46-1.03). CONCLUSIONS: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings.

Palliative Extubation: A Discussion of Practices and Considerations.

Palliative extubation (PE), also known as compassionate extubation, is a common event in the critical care setting and an important aspect of end-of-life care.1 In a PE, mechanical ventilation is discontinued. Its goal is to honor the patient's preferences, optimize comfort, and allow a natural death when medical interventions, including maintenance of ventilatory support, are not achieving desired outcomes. If not done effectively, PE can cause unintended physical, emotional, psychosocial, or other stress for patients, families, and healthcare staff. Studies show that PE is done with much variability across the globe, and there is limited evidence of best practice. Nevertheless, the practice of PE increased during the coronavirus disease 2019 pandemic due to the surge of dying mechanically ventilated patients. Thus, the importance of effectively conducting a PE has never been more crucial. Some studies have provided guidelines for the process of PE. However, our goal is to provide a comprehensive review of issues to consider before, during, and after a PE. This paper highlights the core palliative skills of communication, planning, symptom assessment and management, and debriefing. Our aim is to better prepare healthcare workers to provide quality palliative care during PEs, most especially when facing future pandemics.

Physician perceptions of restrictive visitor policies during the COVID-19 pandemic: a qualitative study.

BACKGROUND: Little is understood of the consequences of restrictive visitor policies that were implemented in hospitals to minimize risk of infection during the COVID-19 pandemic. The objective of this study was to describe physician experiences with these policies and reflections of their effects. METHODS: We conducted semistructured phone interviews from September 2020 to March 2021 with physicians practising in Ontario hospitals, recruited via professional networks and snowball sampling. We audio-recorded, transcribed and analyzed interviews to describe and interpret overarching themes by thematic analysis. RESULTS: We interviewed 21 physicians (5 intensivists, 5 internists, 11 specialists in palliative care). Four main thematic categories emerged, including provider, system, patient and caregiver effects. Provider-related factors included increased time and effort on communication with a need to establish limits; increased effort to develop rapport with caregivers; lack of caregiver input on patient care; the need to act as a caregiver surrogate; and the emotional toll of being a gatekeeper or advocate for visitors, exacerbated by lack of evidence for restrictions and inconsistent enforcement. System effects included the avoidance of hospital admission and decreased length of stay, leading to readmissions, increased deaths at home and avoidance of transfer to other facilities with similar policies. Patient-related factors included isolation and dying alone; lack of caregiver advocacy; and prioritization of visitor presence that, at times, resulted in a delay or withdrawal of aspects of care. Caregiver-related factors included inability to personally assess patient health, leading to poor understanding of patient status and challenging decision-making; perceived inadequate communication; difficulty accessing caregiver supports; and increased risk of complicated grief. Participants highlighted a disproportionate effect on older adults and people who did not speak English. INTERPRETATION: Our study highlights substantial negative consequences of restrictive visitor policies, with heightened effects on older adults and people who did not speak English. Research is required to identify whether the benefits of visitor restrictions on infection control outweigh the numerous deleterious consequences to patients, families and care providers.

Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.

A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic?

INTRODUCTION: Social support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes. METHODS: An online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018. RESULTS: Responses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the 'most social' service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal 'social-only' activities were present, but less common. Over a third of all the services were described as 'drop in'. Most responding hospices did not routinely use patient reported outcome measures in their 'most social' services. CONCLUSIONS: The survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients.

Integrating specialist palliative care to improve care and reduce suffering: cystic fibrosis (InSPIRe:CF) - study protocol for a multicentre randomised clinical trial.

INTRODUCTION: Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. METHODS AND ANALYSIS: This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. ETHICS AND DISSEMINATION: Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: ISRCTN53323164.

"I Am Not the Same Man ": A Case Report of Management of Post-COVID Refractory Dyspnea.

The SARS-CoV-2 pandemic brings with it a significant number of post-COVID symptoms, including persistent dyspnea and neuropsychological sequelae. The palliative approach in the treatment of these refractory symptoms is effective and widely applicable in different settings. We report the case of a patient with refractory dyspnea admitted to a specialized palliative care unit with a very poor prognosis. The application of different tools of the palliative approach proved to be effective: a detailed advanced care planning and open communication, the respect for the patient's wishes and optimal use of his resources-the salutogenesis- an adaptation of the rhythm of care to that of the patient. The patient was then discharged for rehabilitation, and finally returned home.

Protocol for an integrative review: patient and families' perspectives on telehealth in palliative care.

INTRODUCTION: Increases in the use of telehealth in palliative care (telepalliative care) prior to, and during, the COVID-19 pandemic have resulted in a proliferation of studies on the topic. While knowledge is building on how providers and recipients adapt to telepalliative care, no reviews have, as of yet, examined telepalliative care from a patient and family perspective. Therefore, the aim of this integrative review is to explore patients and families' perspectives on telepalliative. METHODS AND ANALYSIS: An integrative review will be performed inspired by the methodology of Remmington and Toronto from March 2022 to December 2022. Medline, Embase, PsycINFO and CINAHL will be searched for primary peer-reviewed studies that describe telepalliative care from patient and families' perspectives. Limiters will be used for age; 18 years+, time; 10 years, and language; English and Danish. Hand searches of authors of included articles and reference lists of included articles will be performed. Two reviewers will independently screen and appraise selected articles using the Mixed Method Appraisal Tool. Conflicts will be resolved through discussions with a third reviewer. Data will be extracted independently by two reviewers into a data matrix with predefined headings and analysed using thematic analysis. Findings will be reported thematically, summarised into a thematic synthesis and discussed in relation to relevant literature. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Results will be published in an international peer-reviewed journal and presented at a relevant international conference. Reporting of this protocol was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses Protocol checklist and prospectively reported to PROSPERO (CRD42022301206).

Impact of Referring Team Characteristics on Inpatient Palliative Care Consultation Rate at a Comprehensive Cancer Center.

Background: No prior study addresses the impact of admitting team characteristics on inpatient palliative care (PC) consultation rate in cancer patients. Understanding consultation rate differences among admitting service types may reveal PC access disparities for patients who would benefit from consultation. Aim: To determine the impact of admitting service characteristics (teaching vs. nonteaching and surgical vs. medical) on inpatient PC consultation rates. Methods: A six-month cross-sectional study was performed at an academic comprehensive cancer center. Inpatient PC consultations and follow-up visits were compared to total admissions by admitting service category. Results: Five thousand six hundred ninety-seven admissions resulted in 710 new PC consultations and 2494 follow-up visits. Patients admitted to medical services had highest odds of PC consultation, while data for teaching services were mixed. There was no difference in follow-up visits. Conclusions: Significant differences between medical and surgical service PC consultation rates may indicate specialty PC access disparities solely based on their admitting service.

Are Opioid Infusions Used Inappropriately at End of Life? Results From a Quality/Safety Project.

CONTEXT: Opioid continuous infusions are commonly used for end-of-life (EOL) symptoms in hospital settings. However, prescribing practices vary, and even the recent literature contains conflicting protocols and guidelines for best practice. OBJECTIVES: To determine the prevalence of potentially inappropriate opioid infusion use for EOL comfort care at an academic medical center, and determine if inappropriate use is associated with distress. METHODS: Through literature review and iterative interdisciplinary discussion, we defined three criteria for "potentially inappropriate" infusion use. We conducted a retrospective, observational study of inpatients who died over six months, abstracting demographics, opioid use patterns, survival time, palliative care (PC) involvement, and evidence of patient/caregiver/staff distress from the electronic medical record. RESULTS: We identified 193 decedents who received opioid infusions for EOL comfort care. Forty-four percent received opioid infusions that were classified as "potentially inappropriate." Insufficient use of as-needed intravenous opioid boluses and use of opioid infusions in opioid-naïve patients were the most common problems observed. Potentially inappropriate infusions were associated with more frequent patient (24% vs. 2%; P < 0.001) and staff distress (10% vs. 2%; P = 0.02) and were less common when PC provided medication recommendations (20% vs. 50%; P < 0.001). CONCLUSION: Potentially inappropriate opioid infusions are prevalent at our hospital, an academic medical center with an active PC team and existing contracts for in-hospital hospice care. Furthermore, potentially inappropriate opioid infusions are associated with increased patient and staff distress. We are developing an interdisciplinary intervention to address this safety issue.

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers across the United States.

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Palliative care management of head and neck cancer patients among otolaryngology surgeons: a novel national survey assessing knowledge, decision making, perceived confidence and training in the UK.

OBJECTIVE: Management of head and neck cancer patients provides unique challenges. Palliation serves to optimise quality-of-life by alleviating suffering and maintaining dignity. Prompt recognition and management of suffering is paramount to achieving this. This study aimed to assess perceived confidence, knowledge and adequacy of palliative training among UK-based otolaryngologists. METHOD: Eight multiple-choice questions developed by five palliative care consultants via the Delphi method were distributed over five weeks. Knowledge, perceived confidence and palliative exposure among middle-grade and consultant otolaryngologists were assessed, alongside training deficits. RESULTS: Overall, 145 responses were collated from middle-grade (n = 88, 60.7 per cent) and consultant (n = 57, 39.3 per cent) otolaryngologists. The mean knowledge score was 5 out of 10, with 22.1 per cent (n = 32) stating confidence in palliative management. The overwhelming majority (n = 129, 88.9 per cent) advocated further training. CONCLUSION: A broad understanding of palliative care, alongside appropriate specialist involvement, is key in meeting the clinical needs of palliative patients. Curriculum integration of educational modalities such as simulation and online training may optimise palliative care.

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review.

PURPOSE OF REVIEW: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed. RECENT FINDINGS: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred. SUMMARY: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum.

Physicians' perceptions of patient participation and the involvement of family caregivers in the palliative care pathway.

INTRODUCTION: Patient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach. METHODS: A purposive sampling included physicians who worked in different phases of the palliative pathway. In-depth, semi-structured interviews were conducted with 13 physicians in Norway between May and June 2020. RESULTS: Three main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision-making in the middle phase, and (3) family involvement in the terminal phase. CONCLUSION: The physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health-care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care. PATIENT OR PUBLIC CONTRIBUTIONS: Family caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.

Palliative care to cancer patients: how COVID-19 pandemic could affect quality of care.

OBJECTIVE: To evaluate the impact of COVID-19 pandemic on the care delivered to hospitalized cancer patients in end-of-life. METHODS: A retrospective analysis of data of hospitalized patients with advanced solid tumors, who died under exclusive palliative care during first wave (March 2020 to July 2020) compared with the period previous pandemic (January 2018 to February 2020). RESULTS: A total of 190 oncologic patients were included, 161 patients before the pandemic, and 29 in the period from March 2020 to July 2020. The average hospitalization was 497.2 patients per month, before the pandemic, and dropped to an average of 46.5 in the pandemic, whereas the death rate decreased from an average of 6.3 patients per month to 4.8. Considering the benchmarks for quality of care during end-of-life care, preferences on life assistance were discussed prior to hospitalization for 34.4%, before the pandemic, and 13.8% during the pandemic (p=0.0298); 9.3% received chemotherapy 15 days prior to the date of death, before the pandemic, and 20.7%, in the pandemic (p=0.1012). CONCLUSION: Based on the present results, despite the decrease in oncology admissions, the advanced-stage cancer patients continued to seek hospital for end-of-life care. However, we could observe in our benchmarking analyses for palliative quality of care that talks about prognosis occurred less often during the pandemic.