Palliative Care Needs of Women With Advanced Chronic Obstructive Pulmonary Disease: A Mixed Methods Study.

Individuals with chronic obstructive pulmonary disease (COPD) experience high symptom burden, severe illness, and frequent deterioration in quality of life. Women with COPD represent a unique population with potential unmet care needs yet remain underrepresented in palliative care (PC) literature. The purpose of this study was to investigate specific needs of women with COPD, learn how COPD symptoms impact women, and explore factors related to PC knowledge, access, and barriers. A total of 30 individuals were enrolled in this prospective, single-arm multimethod study, using an adapted Maslow's hierarchy of needs framework. Fifteen participated in semistructured interviews. Women with advanced COPD identified care needs and barriers including access to medications/oxygen and resources (pulmonary rehabilitation/support groups), information about disease/treatment, and effect of weather conditions on symptoms. Some participants were not under the direct care of a pulmonologist but recognized the importance of their services. None of the participants had been referred to or received PC. This study provides evidence that women have unmet care needs, high symptom burden, and disease uncertainty. Women with COPD should have the opportunity to have the supportive care that PC offers. Palliative care and hospice nurses have opportunities to address unmet care needs, increased symptom burden, and disease uncertainty.

Dyspnea and Palliative Care in Advanced Chronic Obstructive Pulmonary Disease: A Rapid Review.

Dyspnea is the most common and activity-limiting symptom for those with chronic obstructive pulmonary disease (COPD). Treatment is complex, palliative care (PC) dyspnea relief interventions are poorly understood, and PC remains underutilized in COPD despite national guidelines and recommendations. The purpose of this rapid review was to explore the concept of dyspnea and role of PC through the lens of providers, caregivers, and patients with COPD. A systematic approach for synthesis was used to identify 13 articles published between January 2018 and October 2023. Team members compared data via visualization and theme clustering to identify key conclusions describing operationalization of dyspnea, management, and PC implications. Dyspnea operationalization was challenging, with inconsistent measurement and terminology. Dyspnea was a significant burden in COPD and contributed to complexity of treatment. Opioids were used most often to treat dyspnea, but provider perspectives and biases can influence treatment decisions and perceptions of opioid therapy by the patient and caregiver. Evidence-based clinical practice guidelines and policies are needed to clarify the use of opioid therapy for dyspnea management to reduce stigmatization and barriers to treatment. Provider education should emphasize a multipronged approach to treatment of dyspnea in COPD with integration of PC early in the care continuum.

American Society for Pain Management Nursing and Hospice and Palliative Nurses Association Position Statement: Pain Management at the End of Life.

Fundamental to the quality of life is assisting patients in relieving pain including at the end of life. Compassionate, effective, evidence-based pain care for the dying improves the quality of life for patients and may reduce distress and complicated bereavement in the loved ones witnessing this death. However, efforts designed to mitigate the consequences of the opioid epidemic have seriously compromised pain care at the end of life. This has created an urgent need to focus on the barriers to relief, and solutions necessary to provide safe and effective pain and symptom management in this population. To that end, a committee of experts was convened by the American Society for Pain Management Nursing and the Hospice and Palliative Nursing Association. These experts reviewed the current literature, developed a draft position statement which underwent consecutive revisions. This statement was then endorsed by the respective organizations. Elucidation of barriers to effective pain control in advanced disease allows targeted interventions; including those related to clinical care, education, accessibility, and research. As nurses, we must continuously advocate for humane and dignified care, promoting ethical, effective pain and symptom management at the end of life for all.

Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina.

Background: Idiopathic pulmonary fibrosis (IPF) is a serious illness with an unpredictable disease course and survival rates comparable with some cancers. Patients with IPF suffer considerable symptom burden, declining quality of life, and high health care resource utilization. Patients and caregivers report many unmet needs, including a desire for more education regarding diagnosis and assistance with navigating disease trajectory. Compelling evidence suggests that palliative care (PC) provides an extra layer of support for patients with serious illness. Research Question: The purpose of this survey was to gain perspectives regarding PC for patients with IPF by board-certified pulmonologists in South Carolina (SC). Study Design and Methods: A 24-item survey was adapted (with permission) from the Pulmonary Fibrosis Foundation PC Survey instrument. Data were analyzed and results are presented. Results: Pulmonologists (n = 32, 44%) completed the survey; 97% practice in urbanized settings. The majority agreed that PC and hospice do not provide the same service. There were varying views about comfort in discussing prognosis, disease trajectory, and addressing advance directives. Options for ambulatory and inpatient PC are limited and early PC referral does not occur. None reported initiating a PC referral at time of initial IPF diagnosis. Interpretation: Pulmonologists in SC who participated in this survey are aware of the principles of PC in providing comprehensive care to patients with IPF and have limited options for PC referral. PC educational materials provided early in the diagnosis can help facilitate and guide end-of-life planning and discussions. Minimal resources exist for patients in underserved communities.

Palliative Care Interventions in Advanced Chronic Obstructive Pulmonary Disease: An Integrative Review.

Background: Chronic obstructive pulmonary disease (COPD), the sixth leading cause of death in the United States, is associated with higher mortality rates in women. Women also experience tremendous symptom burden, including dyspnea, anxiety, and depression, in comparison to men with COPD. Palliative care (PC) provides symptom management and addresses advanced care planning for serious illness, but little is known about the use of PC in women with COPD. Objective: The purpose of this integrative review was to identify known PC interventions in advanced COPD and to understand the problem of gender and sex disparities. Methods: Whittemore and Knafl's methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses were used to guide this integrative review, and the quality of the articles was appraised using the Mixed Methods Appraisal Tool2018 version. A database search was conducted in PubMed, SCOPUS, ProQuest, and CINAHL complete between 2009 and 2021. Results: Application of search terms yielded 1005 articles. After screening 877 articles, 124 met inclusion criteria, resulting in a final sample of 15 articles. Study characteristics were evaluated for common concepts and synthesized using the Theory of Unpleasant Symptoms influencing factors (physiological, situational, and performance). All 15 studies discussed PC interventions with the focus on dyspnea management or improvement in quality of life. None of the studies identified in this review focused specifically on women with advanced COPD receiving PC, despite the significant impact that this illness has on women. Conclusion: It remains unknown if any intervention is more beneficial than another for women with advanced COPD. Future research is needed to provide an understanding of the unmet PC needs of women with advanced COPD.

Outcomes of a National Training Curriculum to Advance Generalist Level Palliative Care.

Background: The adoption of palliative care as an integral component of health care has led to the need for generalist level providers, especially important in serious illnesses such as cancer. Objectives: The goals of this National Cancer Institute-funded training program were to (1) identify the eight domains of quality palliative care applied to oncology practice, (2) demonstrate skills for oncology advanced practice registered nurses (APRNs) in the domains of palliative care, and (3) develop goals for implementing the skills training in practice through process improvement, staff education, and clinical care. Design: The training program led by the End of Life Nursing Education Consortium (ELNEC) project included oncology APRNs in a three-day training course with one-year follow-up for ongoing support and to assess impact. Settings: Five training courses included 430 APRNs from 46 U.S states including both pediatric and adult oncology settings. The project included 25% minority participants. Measurement: Measures included participant goal implementation, course evaluations, and surveys to assess implementation and palliative care practices (precourse, 6 and 12 months postcourse). Results: The ELNEC oncology APRN training course resulted in changes in practice across domains, improved perceived effectiveness in clinical practice, and valuable insight regarding the challenges in generalist level palliative care implementation. Conclusion: The ELNEC oncology APRN course serves as a model for the palliative care field to advance generalist level practice. Future training efforts can build on this project to reach more oncology professionals and those in other areas of serious illness care.

Palliative Care: A Survey of Program Benchmarking for Productivity and Compensation.

Background: Palliative Care (PC) encompasses an integrated health care philosophy of care for individuals with serious illnesses and their families. Referrals to palliative care often come from other healthcare clinicians who lack the time and skill required to address the needs of the patient and their caregivers. At its heart, palliative care is individualized to the values, beliefs, and goals of the patient. The process of eliciting values, beliefs, and goals takes time and expertise, and correspondingly, palliative care is labor intensive. To date, there has been no concentrated focus on how to accurately capture the productivity or work of palliative care clinicians. As a result, there is not a universally accepted method of measuring the effort which includes impact, activity, composition, and productivity of a palliative care program. Objective: This paper reviews results obtained during a telephone survey of similar hospital-based palliative care programs on how they measure productivity. Currently, based on the survey, there are two focused methods for benchmarking: work relative value units (wRVU) and consult volume. This paper highlights the variability of wRVUs and the challenge of using them to compare different PC programs. Design: The design was an open-ended question telephone survey. Using the characteristics of our hospital program, the team created a composite of descriptions to consider for comparison. Then, various hospital-based palliative care teams were selected based on publicly reported data through Vizient, a national benchmarking organization. Based on a literature review, an open-ended question survey was created. These questions explored program composition, clinician productivity and performance benchmarks. Data was collected manually and stored in a confidential file. Result: Ninety-four programs were queried that met the following composite: (1) participated in Vizient program and (2) self-reported a hospital-based, inpatient palliative program. Forty-one programs responded to the request to participate. Of these, 32 programs consisted of facilities who had hospitalists who provided palliative care, but there was not a dedicated palliative care team. Nine programs had a dedicated palliative care team with clinicians who only practiced palliative medicine. Inquiry to these programs revealed that within these nine programs-two methods of capturing clinician productivity were used-five sites used a wRVU metric and four sites used a consult volume metric. Conclusion: Preliminary findings support the complexity of benchmarking PC programs against peer institutions with a standard productivity model based on the variability in program composition.

The CASH assessment tool: A window into existential suffering.

Spiritual beliefs and practices have long served as a critical component of treating or managing serious illness. There is evidence to suggest that patients would like healthcare professionals to address their existential and spiritual needs. The CASH Assessment Tool focuses on four key areas of spiritual concern: Care, Assistance/Help, Stress, and Hopes/Fears. In this QI Project, a palliative care team within an urban, safety net, tertiary-care, and academic healthcare setting sought to elicit themes from the CASH assessment used by chaplains caring for patients with serious illnesses. Thirty patients were included in the pilot. Themes identified included knowing the patient as a person, concern about loved ones, concern about pain, and fear of death. We found that the CASH Assessment Tool was able to demonstrate the existential concerns of patients and serve as a framework for discussion about concerns and hopes of patients with serious illness.

Management of Dyspnea in Advanced Cancer: ASCO Guideline.

PURPOSE: To provide guidance on the clinical management of dyspnea in adult patients with advanced cancer. METHODS: ASCO convened an Expert Panel to review the evidence and formulate recommendations. An Agency for Healthcare Research and Quality (AHRQ) systematic review provided the evidence base for nonpharmacologic and pharmacologic interventions to alleviate dyspnea. The review included randomized controlled trials (RCTs) and observational studies with a concurrent comparison group published through early May 2020. The ASCO Expert Panel also wished to address dyspnea assessment, management of underlying conditions, and palliative care referrals, and for these questions, an additional systematic review identified RCTs, systematic reviews, and guidelines published through July 2020. RESULTS: The AHRQ systematic review included 48 RCTs and two retrospective cohort studies. Lung cancer and mesothelioma were the most commonly addressed types of cancer. Nonpharmacologic interventions such as fans provided some relief from breathlessness. Support for pharmacologic interventions was limited. A meta-analysis of specialty breathlessness services reported improvements in distress because of dyspnea. RECOMMENDATIONS: A hierarchical approach to dyspnea management is recommended, beginning with dyspnea assessment, ascertainment and management of potentially reversible causes, and referral to an interdisciplinary palliative care team. Nonpharmacologic interventions that may be offered to relieve dyspnea include airflow interventions (eg, a fan directed at the cheek), standard supplemental oxygen for patients with hypoxemia, and other psychoeducational, self-management, or complementary approaches. For patients who derive inadequate relief from nonpharmacologic interventions, systemic opioids should be offered. Other pharmacologic interventions, such as corticosteroids and benzodiazepines, are also discussed.Additional information is available at www.asco.org/supportive-care-guidelines.

Iatrogenic Oral Ketamine Overdose in Palliative Care.

Background: Optimal pain management in the palliative care setting often requires multiple pharmacological interventions including novel and off-label therapies. Ketamine is an anesthetic agent with increasing evidence supporting its use for pain. Through N-methyl-d-aspartate antagonism and activity at opioid receptors, it is an adjuvant to traditional analgesics with the benefit of being opioid sparing. Ketamine has a wide safety profile with limited reports of overdose. Little is published on supratherpeutic dosing in the pain setting. Objective: We report a case of a 41-year-old male with refractory nociceptive and neuropathic cancer-related pain. Conventional therapies were ineffective. Ketamine was initiated to reduce opioid burden and attenuate pain with good response. The patient received an iatrogenic overdose (10 times ordered dose) of the drug. Several self-limited physiologic and psychologic reactions were observed during subsequent monitoring. Design: This is a study and analysis of a patient with refractory nociceptive and neuropathic pain syndrome treated with ketamine who sustained an iatrogenic overdose of ketamine. Conclusions: Ketamine's use to treat pain is increasing along with its evidence of efficacy. Despite ketamine's wide safety profile, the medication is not without risk, especially in palliative care wherein patients are on multiple drugs with potentially severe interactions. Careful examination of the risks of overdose, especially of the various formulations of the drug, is needed.

Nebulized Fentanyl for Dyspnea: A Retrospective Chart Review.

Nebulized fentanyl is well established for analgesia but its use for dyspnea requires further investigation. The aim of our study was to determine the effectiveness of nebulized fentanyl in treating patients with dyspnea and to determine if there were harmful side effects described by patients or their providers. We used a convenience sample of patients from July 1 2014 to July 1 2018 and performed a retrospective chart review. We found that 360 doses of nebulized fentanyl were given to 73 patients during that time period. Of the 73 patients evaluated, 32 patients (43.8%) were female and forty-one were male (56.1%). The median age was 67 and the median length of stay was 9 days. There were no documented findings of bronchospasm, hypotension, or allergic reaction in any of the medical records reviewed. Patients treated with nebulized fentanyl for dyspnea showed a mean decreased respiratory rate of 4.3 breaths/min and a mean increased oxygen saturation of 2.3%. Also, 71% of patients with documented responses experienced an improvement in their dyspnea. Our preliminary data suggest that nebulized fentanyl has limited side effects and may have a role in the treatment of dyspnea. Further research is necessary to determine its efficacy.

Nebulized Vasopressin for the Control of Hematemesis and Hemoptysis in a Child With Recurrent, Refractory Stage III Burkitt Lymphoma.

BACKGROUND: Bleeding occurs with some regularity at the end of life. Patients often endure fatigue, weakness, pain, dyspnea and anxiety. These symptoms are magnified in visually apparent bleeds. Management can be particularly challenging as we attempt to balance therapies with goals of care. Children are at risk for such complications and symptoms; providers must ensure comfort for both the patient and family. CASE DESCRIPTION: A 7-year-old male with recurrent, refractory Burkitt lymphoma was frequently hospitalized for palliative chemotherapy and disease complications. On his final admission, he experienced gross hemoptysis and hematemesis: he was short of breath, fatigued and anxious due to his blood loss. His and his family's angst were heightened by "seeing" his bleed. Potential, especially invasive, treatments were limited by our goals to promote comfort, limit interventions, maintain alertness, poor intravenous access and a small bowel obstruction. Nebulized vasopressin, 10 units in 4ml of normal saline given over 10 minutes provided JC with needed relief. His bleeding remitted and he tolerated its administration. CONCLUSION: There are many treatments for hemorrhage; however, given the challenges of goals of care, administration, side-effects and tolerability, further investigation into nebulized vasopressin as a potential therapy for hemoptysis and hematemesis at the end-of-life is warranted.

Pain Assessment in the Patient Unable to Self-Report: Clinical Practice Recommendations in Support of the ASPMN 2019 Position Statement.

Pain is a subjective experience, unfortunately, some patients cannot provide a self-report of pain verbally, in writing, or by other means. In patients who are unable to self-report pain, other strategies must be used to infer pain and evaluate interventions. In support of the ASPMN position statement "Pain Assessment in the Patient Unable to Self-Report", this paper provides clinical practice recommendations for five populations in which difficulty communicating pain often exists: neonates, toddlers and young children, persons with intellectual disabilities, critically ill/unconscious patients, older adults with advanced dementia, and patients at the end of life. Nurses are integral to ensuring assessment and treatment of these vulnerable populations.

Online End-of-Life Nursing Education Consortium Core Curriculum for Staff Nurses: An Education Strategy to Improve Clinical Practice.

Because of the growing population of patients with serious illness, the demand for specialty palliative care exceeds the resources available. Nurses must be prepared to provide primary palliative care to fill the gap in the availability of specialized palliative care providers. However, meeting the educational needs of a vast number of practicing nurses poses a significant challenge. Often, institutions are limited in the financial and staffing support that they can contribute for continuing nursing education, especially when the training requires staff to spend substantial time away from work. In order to address this issue, one large medical center conducted a study to examine the educational and clinical practice outcomes of offering an online version of the End-of-Life Nursing Education Consortium Core Curriculum to nearly 100 nurses. The participants were divided into 2 groups. Group 1 received online education only, whereas the other group received the online education plus a 3-hour face-to-face training session. Both groups reported statistically significant improvements in symptom management and communication skills, with no significant difference between the pedagogical approaches. Most importantly, the education resulted in a statistically significant impact on the nurses' clinical practice. The results of this study demonstrate that online education can be used as an effective and efficient strategy to provide primary palliative care education to a large number of nurses.

ASPMN 2019 Position Statement: Pain Assessment in the Patient Unable to Self-Report.

Managing pain in those vulnerable populations who are unable to self-report or communicate is challenging due to difficulty recognizing pain presence and severity. As no valid and reliable objective measure of pain exists, the ASPMN supports assessment practice recommendations that gather relevant information to infer presence of pain and evaluate response to intervention. Nurses and other healthcare professionals must be advocates for those who are unable to speak for themselves regarding their pain experience.

Dexmedetomidine Use in a Case of Severe Cancer Pain.

A 58-year-old male with chronic pancreatitis was seen by the palliative care service for pain and agitation related to a recent diagnosis of disseminated abdominal cancer. Increasing symptom burden, including pain and nausea, in the face of escalating doses of multiple opioid and sedative medications resulted in the addition of dexmedetomidine to successfully control his symptoms. Visceral sensitization related to his chronic pancreatitis likely increased his pain perception and required a multimodal approach to control his symptoms.

The palliative APRN leader.

Advanced practice registered nurses (APRNs) are leaders in clinical practice, systems-level care delivery, nursing practice, and policy. The challenge is that in the current environment, their leadership is not highlighted. With the national shortage of palliative care clinicians, APRN leaders will be necessary to care for all the patients and their families with serious illness. While many programs describe their APRNs as leader in clinical care, there is not much written about their leadership in other areas. This paper provides a description of APRN palliative care leadership and opportunities across all domains of clinical care, education, advocacy/policy, research, and administration/management.

A Treatment for Refractory High Ileostomy Output.

We present a case where the glucagon-like peptide 2 (GLP-2) analog teduglutide was used successfully to decrease high ostomy output due to short bowel syndrome in a patient not entirely dependent on parenteral nutrition. Short bowel syndrome is known to decrease quality of life and is associated with high health care costs. Although use has been limited by cost, teduglutide appears to be a treatment option for palliative care practice if patients suffer from short bowel syndrome.

Palliative Care Consultation Policy Change and Its Effect on Nurses' Moral Distress in an Academic Medical Center.

Moral distress affects workplace environment, burnout, employee retention, and patient safety. Palliative care is frequently involved in complex care for patients that may cause moral distress among staff. The goal of this study was to measure change in moral distress among nurses after implementation of a policy that allows nurses to consult palliative care. Before the policy change, data were gathered via email using the Moral Distress Scale-Revised. The scale was redistributed 6 months after implementation of the consult policy. Pre and post Moral Distress Scale-Revised results were analyzed. Qualitative thematic analyses of the nurses' comments were conducted.A significantly lower percentage of nurses reported providing care for a hopelessly ill patient frequently or very frequently (34.6% vs 23.1%, P = .0397) after the policy change. However, a significantly higher percentage of nurses postpolicy reported frequently or very frequently providing less-than-optimal care because of pressures from administrators/insurers (14.4% vs 21.1%, P = .0378), caring for patients they did not feel qualified to care for (5.3% vs 14.8%, P = .0055), and working with providers who were not competent to care for the patient (13.9% vs 26.9%, P = .0059). Themes from nurses' comments were inadequate staffing, communication, ethical concerns, and lack of education.