Importance Of Palliative Care Research Articles

Spiritual Care through the Lens of Portuguese Palliative Care Professionals: A Qualitative Thematic Analysis.

Providing spiritual care is paramount to patient-centered care. Despite the growing body of data and its recognized importance in palliative care, spiritual care continues to be the least advanced and most overlooked aspect. This study aims to explore the perceptions and experiences of spiritual care from the perspective of PC professionals and identify their strategies to address spiritual care issues. Data were collected through semi-structured personal interviews and managed using WebQDA software (Universidade de Aveiro, Aveiro, Portugal). All data were analyzed using thematic content analysis, as recommended by Clark and Braun. The study included 15 palliative care professionals with a mean age of 38.51 [SD = 5.71] years. Most participants identified as lacking specific training in spiritual care. Thematic analysis spawned three main themes: (1) spiritual care as key to palliative care, (2) floating between "shadows" and "light" in providing spiritual care, and (3) strategies for competent and spiritual-centered care. Spiritual care was considered challenging by its very nature and given the individual, relational, and organizational constraints lived by professionals working in palliative care. With support from healthcare institutions, spiritual care can and should become a defining feature of the type, nature, and quality of palliative care provision. Care providers should be sensitive to spiritual needs and highly skilled and capable of an in-the-moment approach to respond to these needs. Further research on educating and training in spiritual care competence is a priority.

Major Challenges for Palliative Care in Oncohematology: Analysis of the “Surprise Question” in a Reference Center

Introduction: Despite advances in the treatment of hematologic malignancies (HM), a significant number of patients still present with high burden of symptoms, and many still die from their diseases. Adequate integration of palliative care (PC) shows strong potential to improve quality of life of this population. However, PC strategies are underutilized due to several barriers in the context of high prognosis uncertainty. Therefore, it is crucial to implement practical tools and triggers for opportune discussions concerning goals of care and specialist PC consultations. The “Surprise-Question” (SQ) “Would you be surprised if this patient died in the next 12 months?” is a simple and feasible instrument for intuitive estimation of mortality among patients with different types of advanced disease with the aim to improve prognostic awareness among healthcare professionals. In 2016 this instrument was introduced in the American Society of Clinical Oncology (ASCO) Integration of Palliative Care Into Standard Oncology Care Guideline. Most studies refer the SQ to solid tumors and very little is known about the application of this tool in the context of HM. We evaluated the prognostic performance of the SQ among patients with HM. Methods: Prospective cohort study conducted from August to December 2021 through the application of interviews with hematologists from the Federal University of Bahia Clinics Hospital (HUPES-UFBA). Adult patients (age≥18) with HM admitted to the Hematology ward of Clinics Hospital during the study period were included and the SQ was answered by the physicians responsible for the patients at the time of inclusion. Clinical information was extracted from medical records. Results: During the study period, 76 patients were included after exclusion criteria (age<18 and not HM) were applied. Median age was 48.8 years-old (SD 17.2), and most participants were female (58%). Regarding the diagnosis, 38.2% had acute leukemia, 25% had R/R (refractory/relapsed) lymphoma, and 30.3% had R/R multiple myeloma. Forty-nine patients (64.5%) had poor performance status (ECOG 3 or 4), and most patients (57.9%) were receiving disease-modifying therapy. Physicians responded “No, I would not be surprised” (positive, SQ+) for 43 (57%) patients. After 12 months, 35 patients (46%) had died, from which 31 (89%) were in the group SQ - “No”. The sensitivity of the SQ was 88%, and specificity was 72%. The positive predictive value was 72%, negative predictive value was 88%, and accuracy was 79%. Notably, although clinicians found that 43 (57%) patients had a life expectancy of less than 12 months, only 24 (31.6%) were being followed-up with PC at the time of the interview. Conclusion: The SQ has been shown to correctly estimate death among 68.3% of patients with blood cancers in the previous literature. In our study, the SQ demonstrated high sensitivity and potential clinical use. However, even within a center with full availability of a PC team dedicated to patients with advanced diseases and high morbidity and mortality, such as acute leukemia, the hematology team had rarely referred patients to PC. Despite advances on the importance of PC in the care of patients with HM, there is still an important delay when requesting the involvement of this specialty. Thus, effective strategies in order to integrate PC within this scenario are crucial.

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.

Palliative care in heart failure guidelines: A comparison of the 2021 ESC and the 2022 AHA/ACC/HFSA guidelines on heart failure.

The role of palliative care for patients with heart failure (HF) is discussed in both most recent HF guidelines, the 2021 ESC guideline and the 2022 AHA/ACC/HFSA guideline. This review compares the definitions, concepts and specific recommendations regarding palliative care for patients with HF in these two guidelines. Both HF guidelines define palliative care as a multidisciplinary approach aimed at alleviating physical, psychological and spiritual distress of patients and caregivers. Both agree emphatically on the importance of palliative care across all stages of HF with integration early in the illness trajectory. Also, the guidelines concur that palliative care should include symptom management, communication about prognosis and life-sustaining therapies, as well as advance care planning. Despite this consensus, only the AHA/ACC/HFSA guideline gives official recommendations on the provision of palliative care. Moreover, the AHA/ACC/HFSA guideline advocates for a needs-based approach to palliative care allocation while the ESC guideline ties palliative care closely to advanced HF and end-of-life care. The ESC guideline highlights the need for regular symptom assessment and provides detailed guidance on symptom management. The AHA/ACC/HFSA guideline elaborates further on shared decision-making, caregiver and bereavement support, as well as hospice care, and distinguishes between primary palliative care (provided by all clinicians) and secondary (specialty-level) palliative care. Although there is strong agreement on the importance and components of palliative care for patients with HF, there are nuanced differences between the two HF guidelines. Most notably, only the AHA/ACC/HFSA guideline issues recommendations for the provision of palliative care.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. To develop a set of recommendations to advance PC research in SA. Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Failure and Rescue in Surgery—Surgical Covenant, Palliative Care, and Reimagining Quality

This Viewpoint discusses the pitfalls of failure-to-rescue metrics and importance of palliative care within surgical care.

Insights into the advanced non-small cell lung cancer patient journey: Treatment decision-making, preferences, and quality of life considerations.

e21129 Background: Individuals with advanced non-small-cell lung cancer (aNSCLC) who have undergone multiple lines of prior therapy face a poor prognosis and limited treatment options, significantly impacting quality of life (QoL). This exercise explored European, North, and South American patient advocate perspectives on QoL and its relation to treatment decision-making and preferences in aNSCLC. Methods: A global aNSCLC patient advocacy advisory board was convened with organizations from Europe, US, Canada, and Brazil, asking participants about QoL and treatment side effects, and how these relate to subsequent care and treatment decision-making. The discussion was moderated by an oncologist, transcribed, and analyzed using thematic analysis. Results: Preserving one’s independence was highlighted as a key component of QoL, with advocates noting that tumor-related symptoms and treatment toxicities have a substantial negative impact on an individual’s ability to engage in daily activities. Fatigue – both physical and psychological – is especially burdensome, particularly for those who have undergone multiple lines of therapy. Participants also noted the need for more accessible care (e.g., telehealth appointments, oral therapies) that fits into the routines of individuals and caregivers. The importance of palliative care and its ability to improve QoL was noted, showing the need for health systems to better integrate palliative care into treatment regimens. Finally, participants noted that treatment priorities change as individuals undergo subsequent lines of therapy, with participants noting the importance of independence and QoL in later stages of therapy, and thus must be assessed regularly by the care team. Conclusions: Individuals with aNSCLC place importance on consideration of QoL when making treatment decisions, particularly those related to maintaining independence. While there remains a need for additional and more effective therapies, an integrated and accessible care approach, with patient-provider communication focusing on maintaining QoL and independence, should be a priority.

Unmet Needs in Patients With Heart Failure: The Importance of Palliative Care in a Heart Failure Clinic.

BackgroundThere are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic.MethodsSecondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease—Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24–48 min).ResultsParticipants (n = 31) had a median age of 64 years (IQR 56–77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) “feeling well-informed but missing essential discussions”, (II) “although feeling mostly satisfied with the care, remaining with unmet care needs”, and (III) “fearing a referral to palliative care but acknowledging its importance”.ConclusionAlthough patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF.

Importance of palliative care in Covid-19 pandemic

Importance of palliative care in Covid-19 pandemic

Using electronic health records to explore negotiations around euthanasia decision making for dogs and cats in the UK.

End-of-life decision making for animals happens daily in veterinary practice. However, access to such discussions as they happen is difficult, in view of the highly emotional circumstances of end-of-life consultations. Despite the expanding literature on euthanasia, few studies have explored the circumstances of euthanasia disagreement or delay. To explore euthanasia discussions in veterinary practice, consultations recorded in electronic health records in a UK veterinary surveillance database (SAVSNET) were examined. From a sample of 2000 identified consultations, 69 canine and 76 feline consultations were purposively sampled for detailed thematic analysis. Specifically, consultations were selected if they involved a decision to delay euthanasia, including disagreement about the timing of euthanasia. Reasons identified for euthanasia refusal or delay included client-related factors (e.g., allowing other family members to say goodbye, differing opinions on the quality of life) and veterinary surgeon-related factors (eg, the wish to carry out further investigations or to try a new treatment). In the instance of refusal or delay, palliative treatment was commonly provided to preserve animal welfare. This study illustrates some of the processes used to negotiate end-of-life decision making in dogs and cats. Its findings shed light on the importance of palliative care in providing owners with time to decide.

The importance of palliative care in patients with severe and chronic forms of tuberculosis

Palliative care is an approach aimed at improving the quality of life of patients and their families who have problems with life-threatening illness. The aim of the study was to determine the need for palliative care in patients with severe and chronic forms of tuberculosis. This study involved 43 patients with severe or moderate TB. We used the HADS scale to help determine the level of anxiety and depression in patients, the Charlson scale to determine the degree of comorbidity in patients under long-term follow-up, and the Visual Analog Scale (VAS) to assess chronic pain. In summary, treatment of patients with severe and chronic forms of tuberculosis requires palliative care, including medical and psychological interventions.

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

Background: The American Academy of Pediatrics and the National Association of Neonatal Nurses recommend that palliative care be provided as standard care in neonatal intensive care units (NICUs). Objectives: The present study aimed to explain the nurses' experiences of barriers to palliative care in NICUs. Methods: This qualitative study was conducted using the content analysis approach in NICUs of Beheshti and Amin hospitals in Isfahan in 2020. The data were collected using semi-structured in-depth interviews with 12 nurses who had palliative and end-of-life care experiences for infants and families. The nurses were selected using purposive sampling. The duration of each interview varied from 25 to 50 minutes. Data were analyzed using conventional qualitative content analysis conducted inductively with Graham and Lundman’s approach. The criteria proposed by Guba and Lincoln were used to ensure the credibility and reliability of the data. Results: Three main categories were extracted from the data, including unfavorable conditions (subcategorized into “unsuitable physical environment” and “shortage of nurses”), nurse's mental problems (with the subcategories of “nurses’ mental problems in providing neonatal care” and “nurses’ mental problems in providing family care”) and challenges ahead (with the subcategories of "parental presence challenge” and “doctor's instructions challenge”). Conclusions: The findings of the present study revealed the barriers to palliative care for infants and families in NICUs. Given the importance of palliative care in NICUs, effective measures must be taken to overcome these barriers.

The Importance of Palliative Care in COVID-19

Palliative care, special medical care for a person maintaining his/her life with a severe illness, is a philosophy of care and clinical specialty that improves the life quality of the patient and his/her family, providing relief from the symptoms and stress of life-threatening diseases. For families and healthcare professionals, caring for COVID-19-infected patients require complex symptom management, specific care goals, and psychosocial support. There are studies in the literature showing many favorable aspects of palliative care enabling achievements such as improvements in the quality of life, a shortened length of hospital stay, and reduced costs of care. Palliative care should be provided to all patients in need, regardless of their prognosis, and patients should have access to such life-supporting interventions.

Importance of palliative care

Tom McEwan, Principal Educator (Midwifery) for NHS Education for Scotland, discusses how CW+'s Neonatal Palliative Care Project is a critical initiative for midwives

Paediatric palliative screening scale as a useful tool for clinicians\u2019 assessment of palliative care needs of pediatric patients: a retrospective cohort study

BackgroundAlthough the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care.MethodsThis was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019.ResultsThe primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups.ConclusionThe PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.

An internal review of rates of palliative medicine referral for patients with advanced pancreatic cancer.

e16245 Background: Patients diagnosed with advanced pancreatic cancer face many challenges in addition to symptom burden including psychological stressors and often the need for supportive care at home. In recent years, both clinical trials and retrospective reviews have confirmed the benefits of early integration of palliative care services such as improved quality of life and reduced symptom intensity. The American College of Clinical Oncology recommends patients with advanced cancer receive directed palliative care services early after diagnosis and in concurrence with active treatment. While the benefit of palliative care services is clear, the best way to integrate palliative services has not been determined. Our project aims to review the rates of palliative care consultation in patients with advanced pancreatic cancer intending to improve patient outcomes. Methods: We retrospectively reviewed the electronic medical records of all patients diagnosed with pancreatic cancer at Allegheny General Hospital diagnosed between 2009-2020. Summary statistics are presented as percentages for categorical data and median with interquartile range for quantitative data. Results: Of the 171 patients reviewed, 121 competed all treatment and evaluation within our health network. Median age was 63 years (IQR 40-91 years); 55 patients (45%) were male. The majority were white (88%). At the time of diagnosis, 28% of our patients had stage IV disease and 19.8% of patients with stage IV disease had documented palliative care referrals. Eight patients had pain documented at diagnosis, six patients underwent celiac plexus neurolysis, 31 underwent palliative radiation and 43 patients had documented opiate use. Of the 6 patients who underwent celiac plexus neurolysis, only 4 documented pain at 6-month follow-up. Of the 31 patients who underwent palliative radiation, 6 documented pain at 6-month follow-up. Conclusions: Palliative care is an integral part of usual care for pancreatic cancer. Our analysis showed that palliative care is underutilized in our hospital with only 19.8% of patients having documented palliative care visits. While patients may refuse palliative care consult, other contributing factors are likely the lack of access or lack of early involvement of palliative care team members. Integration of palliative care has been proven repeatedly to improve quality of life in patients diagnosed with advanced pancreatic cancer. We aim to improve palliative care integration in out patients’ care by adding a hard stop to electronic medical records to remind physicians to offer palliaitive care to the patients, in addition to arranging medical grand rounds and various lectures to increase awareness of the importance of palliative care in this setting.

Importance of palliative care in medical oncology – the use of IPOS scale

This article briefly presents the arguments that determine the need to integrate medical oncology with palliative care, emphasizing the need for this integration from the moment of cancer diagnosis. Secondly, the IPOS scale (Integrative Palliative care Outcome Scale) is presented, which is an important tool in clinical practice as well as in research. After the presentation of the main items of the scale, a short review of the literature related to this scale is made.

What Is the Preparedness and Capacity of Palliative Care Services in Middle-Eastern and North African Countries to Respond to COVID-19? A Rapid Survey

ContextEvidence from prior public health emergencies demonstrates palliative care's importance to manage symptoms, make advance care plans, and improve end-of-life outcomes. ObjectiveTo evaluate the preparedness and capacity of palliative care services in the Middle-East and North Africa region to respond to the COVID-19 pandemic. MethodsA cross-sectional online survey was undertaken, with items addressing the WHO International Health Regulations. Nonprobabilistic sampling was used, and descriptive analyses were conducted. ResultsResponses from 43 services in 12 countries were analyzed. Half of respondents were doctors (53%), and services were predominantly hospital based (84%). All but one services had modified at least one procedure to respond to COVID-19. Do Not Resuscitate policies were modified by a third (30%) and unavailable for a fifth (23%). While handwashing facilities at points of entry were available (98%), a third had concerns over accessing disinfectant products (37%), soap (35%), or running water (33%). The majority had capacity to use technology to provide remote care (86%) and contact lists of patients and staff (93%), though only two-fifths had relatives’ details (37%). Respondents reported high staff anxiety about becoming infected themselves (median score 8 on 1–10 scale), but only half of services had a stress management procedure (53%). Three-fifths had plans to support triaging COVID-19 patients (60%) and protocols to share (58%). ConclusionParticipating services have prepared to respond to COVID-19, but their capacity to respond may be limited by lack of staff support and resources. We propose recommendations to improve service preparedness and relieve unnecessary suffering.

Teaching Pediatric Palliative Care Communication Skills to Fourth-Year Medical Students Through Role-Play.

IntroductionDespite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care conversations with their patients, particularly in pediatrics.MethodsWe created a 3-hour session featuring an introductory lecture on pediatric palliative care, communication drills on responding to emotion, and small-group case-based discussions utilizing role-play, targeting fourth-year medical students as the primary learners. Senior residents were also given the opportunity to develop skills by role-playing the patient parent and cofacilitating case discussions alongside palliative care faculty. Students evaluated session utility and their own confidence through pre- and postsession surveys using a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree).ResultsTwenty-six students were included in the analysis over 3 years. All agreed that the session was useful (M = 4.9). Students showed significant improvement in confidence in explaining pediatric palliative care (presession M = 3.2, postsession M = 4.1, p < .001), understanding the family experience (presession M = 2.7, postsession M = 4.1, p < .001), and eliciting goals and values from families whose children face serious illnesses (presession M = 3.1, postsession M = 4.1, p < .001). Pediatric resident cofacilitators also felt the session benefited their own teaching and communication skills.DiscussionThis 3-hour interactive session on pediatric palliative care utilizing communication drills and role-play was effective in improving fourth-year medical students' confidence in communicating with families of children facing life-threatening illnesses.

Palliative Care: Too Good to Be True?

IntroductionMany patients and their families are hesitant to consult a palliative care (PC) team. In 2014, approximately 6,000,000 people in the United States could benefit from PC, and this number is expected to increase over the next 25 years.ObjectivesThe purpose of this review is to shed light on the significance of PC and provide a holistic view outlining both the benefits and existing barriers.MethodsA literature search was conducted using MEDLINE (PubMed), Cochrane Central Register of Controlled Trials, and Web of Science to identify articles published in journals from 1948 to 2019. A narrative approach was used to search the grey literature.DiscussionTraditionally, the philosophy behind PC was based on alleviating suffering associated with terminal illnesses; PC was recommended only after other treatment options had been exhausted. However, the tenets of PC are applicable to anyone with a life-threatening illness as it is beneficial in conjunction with traditional treatments. It is now recognized that PC services are valuable when initiated alongside disease-modifying therapy early in the disease course. Studies have shown that PC decreased total symptom burden, reduced hospitalizations, and enabled patients to remain safely at home.ConclusionAs the population ages and chronic illnesses become more widespread, there continues to be a growing need for PC programs. The importance of PC should not be overlooked despite existing barriers such as the lack of professional training and the cost of implementation. Education and open discussion play essential roles in the successful early integration of PC.