Palliative Care Approach Research Articles

Where are the values in evaluating palliative care? Learning from community-based palliative care provision.

The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. An illuminative case study using a rapid evaluation methodology. Qualitative interviews, documentary analysis and observations of home care and community organising. We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values.

Death Literacy for a Public Health Palliative Care Approach in Brunei

Death Literacy for a Public Health Palliative Care Approach in Brunei

"הֲיֵלְכוּ שְׁנַיִם יַחְדָּו? ידע ועמדות אחיות אונקולוגיות אודות מקצוע הריפוי בעיסוק ושילובו בטיפול פליאטיבי"

Background. Palliative care represents a therapeutic approach designed to mitigate suffering and enhance the quality of life for patients and their families. The profession of occupational therapy (OT) plays a distinctive role in palliative care, as underscored by the Israeli National Palliative Program's call for the integration of OTs within the multi-professional team. To effectively realize this integration, team members, including nurses, should enhance their understanding of the potential contributions of OT and foster a positive attitude towards its inclusion in palliative care. This study aims to assess the level of knowledge among oncology nurses, regarding the OT profession, their attitudes regarding its integration into palliative care and the correlation between them. Method. An online 'knowledge and attitude' questionnaire was developed specifically for this study and completed by 89 oncology nurses (all women). Results. The findings revealed that the oncology nurses exhibited a high level of knowledge about the OT profession (M=10.51, SD=2.21, in the range of grades 1-14). Regarding their attitudes, it was observed that they acknowledged the significance of integrating OT into palliative care, though, in practice, they did not act accordingly with this belief. In addition, a positive correlation was found between the cognitive and behavioral dimensions of the position. The study did not uncover significant relationship between the nurses' level of knowledge about OT and their attitudes towards its integration. Conclusions and Recommendations. Despite the oncology nurses' commendable knowledge and positive perception of OT's integration into treatment, their actions in practice did not consistently align with these views. Consequently, fostering increased collaboration between the professions of OT and nursing within palliative care is imperative, with particular focus on education, research, policy, and clinical implementation. Additionally, it is recommended to actively promote and implement the recommendations outlined in the Israeli National Program for Palliative Care concerning the integration of OT as an integral part of the multi-professional team. This concerted effort will not only enhance patient care but also reinforce the efficacy of the palliative care approach.

Integrating health promotion and palliative care: improving determinants of health and well-being in the context of serious illness and the end of life

Background: Growing evidence shows that using a health promotion approach in palliative care can have a positive impact on health outcomes in patients, their families and communities, yet, the relevance and importance of stimulating health and well-being in the context of serious illness and the end of life is often still not understood or recognized.
 Objectives: With this workshop we aim to 1) provide more knowledge on the integrated approach of health promotion and palliative care, focusing on its practical applications and the partnerships it entails, 2) reflect with the participants about the added value of this integration throughout individual life courses, within communities and society as a whole, 3) discuss if and how this approach could be applied in the work or organization of the participants.
 Format: The speakers will first give a brief overview of the conceptual overlap between health promotion and palliative care, their integration and the professional developments that have resulted from this. After, three short presentations on concrete examples of this integration in practice will be given with an emphasis on the different types of partnerships involved. To stimulate the group discussion on the added value of integrating health promotion and palliative care, we follow with a fictional life story of a person who at different times of her life is confronted with serious illness, loss and the end of life. Afterwards, participants are invited to reflect and debate on the relevance and potential of this approach in their own line of work. We end with a short summary of key messages and offering participants the chance to give final reflections and feedback on the subject as well as structure of the workshop.
 For whom?: Anyone active in the policy, practice, advocacy or research surrounding palliative and end-of-life care and/or health promotion.
 Time schedule (90’ duration):
 - part 1 (5'): 'Introduction' by Anne-Lore Scherrens
 - part 2 (5'): 'Integrating health promotion and palliative care: from conceptual overlap towards new partnerships and promising applications in practice' by Marjolein Matthys
 - part 3 (15'): 'Three short (3x5’) presentations offering concrete examples (the Belgian ‘My Care My Voice’ intervention, the Swedish DöBra cards and the development of a public awareness campaign on palliative care in Flanders, Belgium)' by Anne-Lore Scherrens, Marjolein Matthys and Leen Van Brussel
 - part 4 (25'): Departing from a fictional life story and applying a socio-ecological lens, group discussion on the added value of the integrated approach of health promotion and palliative care
 - part 5 (25'): Group discussion on the relevance and potential of the integrated approach in the context of the participants’ work
 - part 6 (10’): Closing reflections (participants and speakers)
 (5' extra)

Parkinson disease patients' and carepartners’ perceptions of palliative care

IntroductionOutpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. MethodsUsing qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. ResultsFive themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients’ emotional needs and for carepartners, and for anticipatory guidance to guide future planning. ConclusionsDespite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.

A Palliative Care Approach to Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a degenerative disease characterized by motor dysfunction. Currently, treatment options are limited and management is based mostly on symptom control and quality of life optimization, so palliative care plays a fundamental role. Our objective was to characterize the ALS population in Madeira Island that was referenced and/or followed by a palliative care unit over a five-year period. Longitudinal, retrospective, descriptive, and observational study to analyze patients with ALS who were referred and/or followed by a palliative care unit during a five-year period, between 2017 and 2021. Patient's medical electronic and physical records were analyzed to gather data. Descriptive and inferential statistical analysis was done using Microsoft Excel and Statistical Package for the Social Sciences (version 28.0.1). During this five-year period, a total of 38 patients were diagnosed with ALS in Madeira Island and23 (60.53%) were referred to palliative care. Three patients died before assessment, so 20 (50.63%) were followed by the palliative care team. They had a median life expectancy of 425 days and the median time spent in palliative care was 137 days. Of this population, 56.52% (n=13) was male with an average age of 64 years. The median period from diagnosis to referral was 167 days, with most referrals being made by family medicine (39.13%; n=9) motivated by uncontrolled symptoms (95.65%; n=22).The median period from referral to first assessment by a palliative care physician was 19 days. The Palliative Performance Scale (PPS) and Confusion Assessment Method (CAM) applied on the first visit had a median score of 40% in the former and was negative in 95.00% (n=19) of patients in the latter. Advanced care directives were present in 55.00% (n=11) of patients and all provided care was in accordance with the patient's wishes. The most common symptoms were dysphagia, dyspnea, pain, anxiety, and sialorrhea. The most used drugs were morphine, riluzole, butylscopolamine, bisacodyl, and midazolam. As for other interventions, 55.00% (n=11) of patients underwent noninvasive ventilation (NIV), 15.00% (n=3) were submitted to percutaneous endoscopic gastrostomy (PEG), and one patient (5.00%) was nasogastrically intubated. The death rate was 95.00% (n=19) with 73.68% (n=14) of deaths occurring in the palliative care unit. Literature has shown that there are many advantages to the early inclusion of palliative care in ALS management, achieving effective symptom control and greater quality of life, but also reducing caregiver burden. However, in this study, we found that referrals to palliative care were late and included mostly cases of advanced disease with uncontrolled symptoms.

Experiences of Next-of-Kin to Foreign-Born Dying Patients Cared for in Specialist Palliative Care: A Qualitative Study.

Earlier studies have shown that healthcare personnel in specialized palliative care see patients with migrant backgrounds as others and that they, as providers, are unable to provide culturally competent care. Thus, these studies indicate a taken for granted perception, instead of knowledge based on experiences or scientific knowledge. The objectives of this study were to explore preferences, expectations on and experiences of specialist palliative care from next-of-kin of migrants of different origin. This study used a qualitative methodology, and the data were analyzed with systematic text condensation. The interviews were based on semi-structured interviews with seven next-of-kin. Four code groups represented the next-of kin's experiences: The wishes and needs of the foreign-born person in a palliative phase form the care; The families' prerequisites for, and the impact of, palliative informal caregiving; The staff working in accordance with a palliative care approach; Palliative care in a seamless care chain.

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa.

This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC. PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate. A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness. Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.

Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

ObjectiveTo compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.DesignA qualitative case study method using semistructured...

Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative-Qualitative Study.

Pompe disease (PD) is a rare metabolic disorder with progressive neuromuscular consequences that negatively impact a child's development and quality of life (QoL). Despite an improved prognosis with treatment, the risk for early death due cardiorespiratory crisis remains. Parents not only face physical fatigue and family distress in coping with the child's special needs but also experience emotions, worries, and unexpressed needs (a "humanistic burden") that require supportive interventions. Fourteen parents of children with PD completed an online self-report questionnaire assessing their child's QoL, their own parental burden of care, and disease-related issues. The aim was to estimate the associations between the child's QoL and the caregiver's burden levels. Three mothers were also interviewed. A total of 57.1% of parents lived with moderate/severe burden conditions; worse QoL for the child was associated with higher levels of caregiver burden (rS[N = 14] = -0.67, p < 0.01). Uncertainty about the child's future was a state commonly described by mothers. However, the child's resilience, normalization of disease, and coping strategies (primarily positive appraisal and focusing on the present) alleviated suffering and helped mothers maintain family functioning. Finally, dissatisfaction with communication in relationships with professionals emerged. In conclusion, a typical pediatric palliative care approach is recommended since it manages to guarantee parents empathetic and supportive communication from healthcare professionals, alleviating feelings of isolation and loneliness in parents.

Supportive Services at End of Life can Help Reduce Acute Care Services: Observations From the Medicare Care Choices Model.

This study identifies the mechanisms through which supportive and palliative care services at the end-of-life helped prevent unnecessary use of acute care services. From 2016 to 2021, the Medicare Care Choices Model (MCCM) tested whether offering Medicare beneficiaries the option to receive supportive and palliative care services through hospice providers, concurrently with treatments for their terminal conditions, improved patients' quality of life and care and reduced Medicare expenditures. Previous MCCM evaluation results showed that the model achieved its goals, but did not examine in depth the causal mechanisms leading to these results. Mixed-methods evaluation based on descriptive analysis of MCCM encounter data and qualitative analysis of interviews with staff from high-performing MCCM hospices. MCCM hospices provided 217 156 encounters to 7263 enrollees over 6years. Enrollees received on average 30 encounters with hospice staff while enrolled in the model, representing about 10 encounters per month enrolled. Most encounters were delivered by clinically trained staff in the patient's home. Hospice staff identified five services critical for keeping patients from seeking acute care services: early and frequent needs assessments, direct observation of patients in their homes, immediate responses to patients' medical complaints, round-the-clock telephone access to nursing staff, and communication and coordination of care with primary care physicians and specialists. Palliative care approaches that are high-touch, employ clinically trained staff who visit patients in their homes, routinely evaluate how to manage patient symptoms, and are available when needs arise can improve outcomes and decrease costs at the end of life.

Targeted delivery of oxaliplatin via folate-decorated niosomal nanoparticles potentiates resistance reversion of colon cancer cells

BackgroundColorectal cancer (CRC) is a prevalent type of cancer, ranking third in incidence and fourth in cancer-related deaths globally. The increase in mortality rates related to colorectal cancer among younger patients is a cause for concern. Chemotherapy is the primary approach for palliative care in colon cancer, but the development of drug resistance limits its effectiveness. Apoptosis is a process of programmed cell death that plays a crucial role in regulating normal cell death and abnormal tissue degeneration in cancer. Genes such as caspase-3, caspase-9, p53, and survivin are involved in apoptosis induction. The field of nanotechnology has presented exciting opportunities for controlled drug delivery and addressing drug resistance in cancer. Niosomes are among the nanocarriers known for their impressive features, making them excellent candidates for drug delivery. In the current study, we investigate whether niosomal nanoparticles coated with FA have the ability to deliver oxaliplatin to drug-resistant cells effectively and potentially resistance reversion in colon cancer cells. MethodsThe niosomal nanoparticles (NPs) were fabricated using the thin-film hydration method and characterized using DLS (Dynamic Light Scattering), FTIR (Fourier Transform Infrared Spectroscopy), SEM (Scanning Electron Microscopy), and AFM (Atomic Force Microscopy) systems. The drug release and drug encapsulation efficiency of the NPs were also determined. An MTT assay was performed on oxaliplatin-resistant cells to determine the IC50 values of the drug in its pure and nano-encapsulated forms. Gene expression of caspase-3, caspase-9, p53, and survivin was investigated using the qRT-PCR (quantitative Reverse Transcription Polymerase Chain Reaction) technique, and cell apoptosis or necrosis was quantified using flow cytometry. ResultsSize, PDI, zeta potential, morphology, drug release, and encapsulation efficiency of fabricated niosomal NPs were acceptable. Oxaliplatin anti-cancer drug showed a higher impact on cancerous cells in nano-encapsulated form. The expression level of caspase-3, caspase-9, and p53 was increased which was in confirmation by flow cytometry results. ConclusionTaken together, results of this study demonstrated potential effect of folate decorated oxaliplatin-loaded niosomal NPs to resistance-reversion of Oxaliplatin-resistance colon cancer cells.

The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study

Introduction Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient’s family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients’ deaths during their loved ones’ last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. Methods A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient’s last hospital admission. Data were collected via in-depth interviews and researchers’ field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. Results In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers’ perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. Conclusions PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

What Should Clinicians Know About Palliative Psychopharmacology?

The nature and scope of palliative psychiatry and associated ethical implications are debated in the literature. This article examines conceptual limitations of extant accounts of palliative psychiatry, with a focus on psychopharmacological practice, and suggests that modifiable and unmodifiable psychiatric illnesses exist on a spectrum along which broader or narrower palliative psychiatric care approaches can be outlined. The article also discusses how these approaches intersect with questions about whether and to what extent psychiatric medications have symptom-reducing or disease-modifying effects. The discussion leads to the conclusion that clinicians are ethically obliged to distinguish among and clearly formulate goals of care in a dynamic and ongoing process of shared decision making with patients.

Importance of palliative care in oncology: a qualitative study

The objective is to know the perception of nursing professionals about the importance of palliative care in the hospital oncology sector. This is a descriptive-exploratory study of a qualitative nature, with nursing professionals from an oncology sector. Data collection was carried out through a questionnaire prepared on the Google Forms platform with previously structured questions. For data analysis, Braun and Clarke's thematic analysis was used. Eleven nursing professionals participated in the study, most of whom were female nursing technicians. From the data analysis, three themes emerged, namely: Concept of palliative care; Importance of palliative care in the hospital environment; Importance of approaching palliative care during academic training and continuing education. Research participants perceive the importance of introducing palliative care during their training and within the hospital environment. Reporting that the hospital environment is where most patients with life-threatening diseases are found, requiring a palliative care approach in this environment.

Effectiveness of Aromatherapy in Early Palliative Care for Oncology Patients: Blind Controlled Study.

Palliative care is the active holistic treatment of people of all ages who have serious health-related suffering as a result of severe illness, and especially of those who are close to the end of life. Palliative care is provided to cancer patients who experience serious suffering that cannot be relieved without professional intervention and that compromises physical, social, spiritual, and emotional functioning. A straightforward, low-risk, and affordable palliative care approach may be provided through aromatherapy, a type of complementary and alternative medicine. The study objective is to assess the comparative effectiveness of massage, aromatherapy massage, and massage combined with aromatherapy inhalation on cancer patients receiving palliative care. A total of 100 participants who were divided into four groups at random. The first group, designated as the control group, received standard hospital nursing care, the second group received massage only (using the odorless almond carrier oil), the third group received massage with lavender oil, and the fourth group received combined (inhalation and massage) aromatherapy. The Rotterdam Symptom Checklist (RSCL), given two weeks after aromatherapy, was used to examine participants' perspectives of care. On the RSCL, combined aromatherapy performed best. In terms of reported physical symptoms, psychological symptoms, and activities, there were statistically significant differences between the scores of the control group and each of the experimental groups. Nonetheless, the total quality of life score showed no significant difference between the control group and the massage only group (t = 0.529, p = 0.60). When paired with aromatherapy inhalation, massage has a positive effect on physical, psychological symptoms, activities, and overall quality of life for cancer patients receiving early palliative care. Nurses and other healthcare providers are recommended to support programs that provide message therapy to reduce reported bodily symptoms, psychological problems, and limited activities among cancer patients.

Journey to Switzerland as a state of exception: a ‘homo sacer’ Italian experience

ABSTRACT In Italy, the topic of assisted suicide (AS) has been gaining increasing interest in recent years through a number of ‘travel to Switzerland’ cases. Italy, together with other European countries where this practice is not legalised, is involved in the ‘Swiss effect’, that is, ‘suicide tourism’ of ill people. This article looks at the experience of a patient who went to Switzerland for AS (‘Andrea’), accompanied by a photojournalist (‘Giordano’) who discovered that he/she was a healthy person. Giordano was interviewed following the methodology of the interpretative phenomenological analysis, and his answers underwent qualitative analyses that highlighted four main themes illustrating how the experience was deeply traumatic: Giordano’s reasons for addressing AS and his accompanying Andrea; The family shock; Human free will and God’s willingness; Giordano’s emotions and representation of death. On the basis of these results, some biopolitical aspects are discussed in the space of ‘homo sacer’, ‘state of exception’ and ‘social immunisation’. Particular attention is given to the issue of suicide prevention and to its total medicalisation through the palliative care approach.

Providing palliative and end-of-life care in long-term care during the COVID-19 pandemic: a qualitative study of clinicians' lived experiences.

A disproportionate number of COVID-19-related deaths in Canada occurred in long-term care homes, affecting residents, families and staff alike. This study explored the experiences of long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic. We used a qualitative research approach. Long-term care physicians and nurse practitioners (NPs) in Ontario, Canada, participated in semistructured interviews between August and September of 2021. Interviews were undertaken virtually, and results were analyzed using thematic analysis. Twelve clinicians (7 physicians and 5 NPs) were interviewed. We identified 5 themes, each with several subthemes: providing a palliative approach to care, increased work demands and changing roles, communication and collaboration, impact of isolation and visitation restrictions, and impact on the providers' personal lives. Clinicians described facing several concurrent challenges, including the uncertainty of COVID-19 illness, staffing and supply shortages, witnessing many deaths, and distress caused by isolation. These resulted in burnout and feelings of moral distress. Previous training and integration of the palliative care approach in the long-term care home, access to resources, increased communication and interprofessional collaboration, and strong leadership mitigated the impact and led to improved palliative care and a sense of pride while facing these challenges. The pandemic had a considerable impact on clinicians caring for residents in long-term care homes at the end of life. It is important to address these lived experiences and use the lessons learned to identify strategies to improve palliative care in long-term care homes and reduce the impact of future pandemics with respect to palliative care.