Palliative Care Considerations Research Articles

The Chicago Consensus on peritoneal surface malignancies: Palliative care considerations.

The Chicago Consensus Working Group provides multidisciplinary recommendations for palliative care specifically related to peritoneal surface malignancies. These guidelines are developed with input from leading experts including surgical oncologists, medical oncologists, gynecologic oncologists, pathologists, radiologists, palliative care physicians, and pharmacists. These guidelines recognize and address the emerging need for increased awareness in the appropriate management of peritoneal surface disease. They are not intended to replace the quest for higher levels of evidence.

The Chicago Consensus on Peritoneal Surface Malignancies: Palliative Care Considerations.

The Chicago Consensus Working Group provides multidisciplinary recommendations for palliative care specifically related to peritoneal surface malignancies. These guidelines are developed with input from leading experts including surgical oncologists, medical oncologists, gynecologic oncologists, pathologists, radiologists, palliative care physicians, and pharmacists. These guidelines recognize and address the emerging need for increased awareness in the appropriate management of peritoneal surface disease. They are not intended to replace the quest for higher levels of evidence.

Association between Adherence to Recommended Care and Outcomes for Adult Survivors of Sepsis.

Rationale: Postsepsis care recommendations target specific deficits experienced by sepsis survivors in elements such as optimization of medications, screening for functional impairments, monitoring for common and preventable causes of health deterioration, and consideration of palliative care. However, few data are available regarding the application of these elements in clinical practice.Objectives: To quantify the delivery of postsepsis care for patients discharged after hospital admission for sepsis and evaluate the association between receipt of postsepsis care elements and reduced mortality and hospital readmission within 90 days.Methods: We conducted a retrospective chart review of a random sample of patients who were discharged alive after an admission for sepsis (identified from International Classification of Diseases, 10th Revision discharge codes) at 10 hospitals during 2017. We used a structured chart abstraction to determine whether four elements of postsepsis care were provided within 90 days of hospital discharge, per expert recommendations. We used multivariable logistic regression to evaluate the association between receipt of care elements and 90-day hospital readmission and mortality, adjusted for age, comorbidity, length of stay, and discharge disposition.Results: Among 189 sepsis survivors, 117 (62%) had medications optimized, 123 (65%) had screening for functional or mental health impairments, 86 (46%) were monitored for common and preventable causes of health deterioration, and 110 (58%) had care alignment processes documented (i.e., assessed for palliative care or goals of care). Only 20 (11%) received all four care elements within 90 days. Within 90 days of discharge, 66 (35%) patients were readmitted and 33 (17%) died (total patients readmitted or died, n = 82). Receipt of two (odds ratio [OR], 0.26; 95% confidence interval [95% CI], 0.10-0.69) or more (three OR, 0.28; 95% CI, 0.11-0.72; four OR, 0.12; 95% CI, 0.03-0.50) care elements was associated with lower odds of 90-day readmission or 90-day mortality compared with zero or one element documented. Optimization of medications (no medication errors vs. one or more errors; OR, 0.44; 95% CI, 0.21-0.92), documented functional or mental health assessments (physical function plus swallowing/mental health assessments vs. no assessments; OR, 0.14; 95% CI, 0.05-0.40), and documented goals of care or palliative care screening (OR, 0.52; 95% CI, 0.25-1.05; not statistically significant) were associated with lower odds of 90-day readmission or 90-day mortality.Conclusions: In this retrospective cohort study of data from a single health system, we found variable delivery of recommended postsepsis care elements that were associated with reduced morbidity and mortality after hospitalization for sepsis. Implementation strategies to efficiently overcome barriers to adopting recommended postsepsis care may help improve outcomes for sepsis survivors.

PROMOTING SHARED DECISION-MAKING FOR THE TREATMENT OF HEART VALVE DISEASE IN CANADA: A CALL FOR NURSING LEADERSHIP

Aortic stenosis is a progressive, highly debilitating disease associated with aging that leads to mortality, morbidity and poor quality of life if left untreated. Surgical aortic valve replacement (SAVR) and transcatheter aortic valve implantation (TAVI) are the two treatment options available. In some case, medical management and palliative care may be more appropriate. Recent clinical trials and international guidelines have indicated that patient preference is an essential component of treatment decision. Shared decision-making is an evidenced-based approach that promotes collaboration between patients, family members, and healthcare providers when making health decisions. This approach to decision-making is considered essential for patient-centred care, and was recently included as a recommendation in the 2019 updated Canadian Cardiovascular Society (CCS) TAVI Position Statement. The purpose of the presentation is to discuss opportunities for cardiovascular nursing leadership to develop, implement and evaluated shared decision-making to support patient choice in the management of aortic stenosis. We will provide an update on current evidence on treatment options, ranging from recent clinical trials in low risk patients to the integration of a palliative approach in the management of valvular heart disease. We will present a comprehensive overview of the principles of shared decision-making and the evidence guiding the development of decision aids. Lastly, we will outline the plan for the development of a national strategy in collaboration with the CCS and the Canadian Council of Cardiovascular Nurses to integrate shared decision-making in Canadian centres that treat patients with aortic stenosis. Our aim is to raise awareness of the pivotal role of cardiovascular nurses in participating in this initiative and advocate for a patient-centred approach to treatment decision. The rapid emergence of TAVI as a standard of care coupled with the excellent outcomes achieved in SAVR present significant challenges for patients, families and healthcare providers to achieve optimal treatment decision. In addition, the risks of futility and the life-limiting natural disease history of aortic stenosis warrant the careful consideration of palliative care as a treatment option for some patients. Cardiovascular nurses have an opportunity to incorporate patient values and shared decision-making in their practice to help achieve optimal outcomes in this challenging patient population.

The Effectiveness Of Simulation-based Learning In Preparing Exercise Physiology Students For Emerging Clinical Practice Domains

PURPOSE Given the pivotal role exercise plays in the prevention and management of chronic diseases, developing practice-ready clinical exercise physiology (EP) students to program and prescribe exercise-based interventions across these conditions is critical. In emerging clinical domains, the lack of practicum opportunities makes it challenging to provide students with the vital opportunity to translate theory into practice. This study reports on the impact a simulation-based learning experience (SBLE) had on EP student's confidence and perception of knowledge in the clinical domain of palliative care. METHODS: 12 EP students completed a palliative care interprofessional SBLE alongside students from Dietetics (n=50), Pharmacy (n=44) and Social Work (n=7). The SBLE comprised modules on what is palliative care, effective communication for grief, and spiritual and cultural considerations in palliative care. Experienced and accredited practitioners across the range of health disciplines facilitated the SBLE which included pre-reading, briefing, simulation using simulated patients, and debriefing components. Interprofessional simulated patient interactions included initial consultations, education and treatment planning, and a multidisciplinary case conference. A post-simulation questionnaire explored the effectiveness of the SBLE in developing palliative care graduate capabilities. RESULTS: 100% of students ranked their confidence in caring for people with a life-limiting illness as moderate or higher (mean 7.6/10), while 91.7% of students ranked their knowledge and preparedness as moderate or higher (mean 7.5). 75% of students reported having one or no experience, in the past twelve months, caring for a person who has died due to a life-limiting illness in either a clinical placement, employment or personal capacity. Qualitative responses supported the quantitative data with students appreciating the opportunity of being exposed to the clinical domain in a safe and supportive environment that bridged the gap between theory and a real world setting. CONCLUSIONS: The positive impact on student confidence and perceived knowledge highlights the influence of SBLE in palliative care, suggesting a broader utility for this mode of learning in other emerging clinical domains for EP students.

Neither Pediatric nor Adult—Unique Care Considerations in the Adolescent and Young Adult (AYA) Patient Population (FR437)

•Discuss defining characteristics of the adolescent and young adult (AYA) population•Outline unique palliative care considerations for the AYA population•Delineate proposed palliative care models for AYA patients Caring for adolescents and young adults (AYA)—patients aged 16-25—who are nearing end-of-life offers unique challenges for both the patients and providers. The young adult population has recently moved out of the pediatric care model but may not yet be a good fit for the adult care model. Existing literature highlights hypotheses that the AYA population is a unique group with special care needs, as these patients are not only entering early phases of independence as adults with ongoing exploration of identity and social and intimate relationships, but they are doing these things in the setting of a potentially life-limiting illness. Therefore, a dichotomy exists between this setting of growth and ongoing concerns for loss of self and control. It is important to gain the trust of the AYA patient through the use of appropriate language, encouraging the patient to maintain some control, while offering the AYA time to address “the tough stuff.” This population creates unique challenges for palliative care providers. As the field of palliative care is rapidly growing, many providers are early in their careers and potentially closer to similar developmental stages as these patients, at times making care emotionally taxing for the provider. This presentation will define the AYA population and outline both unique palliative care considerations and proposed care models for this patient population utilizing exemplary real-life cases. Distinctive provider challenges relating to care for this patient population will also be discussed.

Postdischarge Mortality after Geriatric Low-Level Falls: A Five-Year Analysis

Geriatric trauma patients with low-level falls often have multiple comorbidities and limited physiologic reserve. Our aim was to investigate postdischarge mortality in this population. We hypothesized that five-year mortality would be higher relative to other blunt mechanisms. The registry of our Level 1 trauma center was queried for patients evaluated between July 2008 and December 2012. Adult patients identified were matched with mortality data from 2008 to 2013 from the National Death Index. Low-level falls were identified by E Codes; other types of blunt trauma were based on registry classification. Patients with multiple admissions were excluded. Univariate analysis was performed using Fisher's exact and Wilcoxon tests. Kaplan-Meier curves were plotted to compare postdischarge mortality. Seven thousand nine hundred sixteen patients were evaluated, 35.1 per cent were females. Patients aged less than 65 years and penetrating trauma were excluded, yielding 1997 patients-63.7 per cent with low-level falls versus 36.3 per cent with other blunt traumas. Geriatric patients sustaining low-level falls were older, more likely female, had a higher inpatient mortality, and were less likely to return home at discharge. Injury severity score, hospital length of stay, and intensive care unit length of stay were similar. Survival analysis demonstrated increased postdischarge mortality in the low-level fall group with 25 per cent mortality at 120 days. Geriatric patients with other blunt trauma had a significantly lower postdischarge mortality. Geriatric patients injured in low-level falls have a higher inhospital mortality, are more likely to be functionally dependent on discharge, and have a high postdischarge mortality. Opportunities likely exist for injury prevention, consideration of palliative care, and postdischarge rehabilitation.

Getting comfortable with “comfort feeding”: An exploration of legal and ethical aspects of the Australian speech-language pathologist’s role in palliative dysphagia care

Purpose: With an ageing population, speech-language pathologists (SLPs) can expect to encounter legal and ethical challenges associated with palliative and end-of-life care more frequently. An awareness of the medico-legal and ethical framework for palliative dysphagia management will better equip SLPs to work effectively in this area.Method: This narrative review examines a range of legislation, legal, ethical and SLP literature that is currently available to orient SLPs to legal and ethical palliative dysphagia management in the Australian context.Result: Relevant legal and ethical considerations in palliative and end-of-life care are described.Conclusion: SLPs have a role in palliative dysphagia management, however, this can involve unique legal and ethical challenges. The legal position on provision and cessation of nutrition and hydration differs between Australian States and Territories. Decisions by the courts have established a body of relevant case law. This article introduces SLPs to some of the important considerations for legal and ethical palliative care, but is not intended to be directive. SLPs are encouraged to explore their local options for ethical and medico-legal guidance. It is hoped that increasing SLPs awareness of many of the concepts discussed in this article enhances the provision of high-quality patient-centred care.

Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis

ObjectivesPalliative care is underused in non-malignant respiratory diseases, including interstitial lung diseases (ILDs). We investigated current practices around palliative and supportive care and explored the impact of a supportive care...

Person-centred care dialectics-Inquired in the context of palliative care.

Although a widely used concept in health care, person-centred care remains somewhat ambiguous. In the field of palliative care, person-centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person-centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person-centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person-centredness in relation to the hermeneutics of the self according to Paul Ricœur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person-centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person-centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person-centred care with exclusively individualistic perspectives. Considerations for person-centred palliative care on micro-, meso- and macrolevels conclude the paper.

Ethical Considerations in Perinatal Palliative Care

Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios.

Perioperative Palliative Care Considerations for Surgical Oncology Nurses.

To explore the opportunities to incorporate palliative care into perioperative oncology patient management and education strategies for surgical oncology nurses. Articles related to palliative care and surgical oncology to determine the degree of integration, gaps, and implications for practice. Although evidence supports positive patient outcomes when palliative care is integrated in the perioperative period, uptake of palliative care into surgical settings is slow. Palliative care concepts are not adequately integrated into surgical and nursing education. With appropriate palliative care education and training, surgical oncology nurses will be empowered to foster surgical-palliative care collaborations to improve patient outcomes.

Is There Hope? Is She There? How Families and Clinicians Experience Severe Acute Brain Injury.

Patients with severe acute brain injury (SABI) raise important palliative care considerations associated with sudden devastating injury and uncertain prognosis. The goal of this study was to explore how family members, nurses, and physicians experience the palliative and supportive care needs of patients with SABI receiving care in the neuroscience intensive care unit (neuro-ICU). Semistructured interviews were audiotaped, transcribed, and analyzed using thematic analysis. Thirty-bed neuro-ICU in a regional comprehensive stroke and level-one trauma center in the United States. We completed 47 interviews regarding 15 patients with family members (n = 16), nurses (n = 15), and physicians (n = 16). Two themes were identified: (1) hope and (2) personhood. (1) Families linked prognostic uncertainty to a need for hope and expressed a desire for physicians to acknowledge this relationship. The language of hope varied depending on the participant: clinicians used hope as an object that can be given or taken away, generally in the process of conveying prognosis, while families expressed hope as an action that supported coping with their loved one's acute illness and its prognostic uncertainty. (2) Participants described the loss of personhood through brain injury, the need to recognize and treat the brain-injured patient as a person, and the importance of relatedness and connection, including personal support of families by clinicians. Support for hope and preservation of personhood challenge care in the neuro-ICU as identified by families and clinicians of patients with SABI. Specific practical approaches can address these challenges and improve the palliative care provided to patients and families in the neuro-ICU.

Selecting Peritoneal Dialysis in the Older Dialysis Population.

Selecting peritoneal dialysis (PD) in older individuals is a complex, multi-step process. At each step, older individuals may not have the opportunity to receive PD unless care is optimized. Older individuals are less likely to complete a PD assessment, because of unstable medical conditions, consideration of palliative care, or reluctance to approach frail patients once they are established on hemodialysis (HD). Older individuals are also more likely to have medical or social conditions that contraindicate PD or to have barriers to self-care PD that may not be overcome with support. Older individuals who are eligible for PD may be reluctant to choose it, leaving HD as the default modality. Finally, receipt of PD may be compromised by urgent HD or PD catheter-related complications at the time of insertion. Despite all these challenges, older patients can do very well on PD, so each step should be well understood and optimized in renal programs to maximize PD use in older patients.

What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey.

BackgroundMany people who might benefit from specialist palliative care services are not using them.AimWe examined the use of these services and the reasons for not using them in a population in potential need of palliative care.MethodsWe conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium.ResultsPalliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer).ConclusionsSpecialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority.

Access to controlled medicines for palliative care in India: gains and challenges.

It was in the early 1990s that an appeal was made, both in India and globally, for access to palliative care to be treated as a human rights issue. Over the past few years, India has witnessed robust advocacy efforts which push for the consideration of palliative care and pain management as a human right. Central to this paper is India's Narcotic Drugs and Psychotropic Substances (NDPS) Act, 1985: its genesis, its critique, and the amendments aimed at enhancing access to the NDPS for medical care and research. I refer to the advocacy efforts in India, particularly the most recent ones, which led to the amendments to the NDPS Act, 1985 in February 2014; and the contribution of the global and local human rights discourse on palliative care to these efforts. This I situate in the overall status of palliative care in India. Towards the end, I briefly set out the agenda that should be pursued in the coming years to enhance access to controlled medicines for pain management and palliative care.

Therapeutic adjustments in stage D heart failure: challenges and strategies.

The morbidity and mortality associated with heart failure (HF) represents a significant public health challenge. Stage D HF identifies a distinct subgroup of advanced HF patients characterized by adverse clinical and hemodynamic factors which warrant evaluation for specialized advanced management strategies and/or consideration of palliative care in tandem with the same recommendations for goal-directed optimal medical therapy as earlier stages of HF. In fact, one of the inherent markers of progression to stage D disease is the need to withdraw previously tolerated neurohormonal agents in the setting of systemic circulatory limitations or renal dysfunction. Furthermore, the requirement for aggressive diuresis in the setting of borderline blood pressures and renal insufficiency is often complicated by worsening renal impairment. Assessment of the appropriate need for inotropic support, given the significant complications associated with their use, is also a frequently encountered challenge complicating the medical management of Stage D HF. This review outlines some of the most relevant challenges of pharmacological therapy in stage D HF and describes current and future strategies that may be employed to overcome some of these obstacles.

ADMISSION TO INTENSIVE CARE FOR PROVISION OF END OF LIFE CARE IN AUSTRALIA AND NEW ZEALAND: DO THE PATIENTS ALL DIE?

BackgroundCaring for those at the end of their lives is an increasing component of work for Intensive Care Units (ICUs). Limited research is available about patients specifically admitted to ICU...

Cultural and religious considerations in pediatric palliative care.

A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

Cultural and Spiritual Considerations in Palliative Care

Culture is a fundamental part of one's being. Spirituality is integrated with culture and both play a significant role in a person's journey through life. Yet, culture and spirituality are often misunderstood and may not seem to be important in healthcare settings. For adults with cancer and their families, this cannot be ignored. This paper reviews The Purnell Model of Cultural Competence as a framework for considering culture and spirituality in healthcare and discusses the importance of acknowledging and incorporating practices that support culture and spirituality in healthcare settings. Examples of how to include cultural and spiritual care in palliative and end-of-life care in healthcare settings are provided.