Dangerous Variation or Patient-Centered Care? Palliative Care and Pain Providers' Comfort, Experiences, and Approaches when Treating Cancer Pain With Coexisting Aberrant Behaviors.

BACKGROUND: Patients with cancer-related pain are at high risk for aberrant drug use behaviors (ADB), including self-escalation, diversion and concurrent illicit substance or opioid misuse; however, limited evidence is available to guide opioid prescribing for patients with life-limiting illness and concurrent or suspected ADB. We sought to characterize how specialists evaluate for and manage these high-risk behaviors in patients with cancer-related pain. METHODS: We conducted telephonic semi-structured interviews with palliative care and pain medicine providers. Participants discussed their own comfort and experience level with identifying and managing ADB in patients with life-limiting illness. They were subsequently presented with a series of standardized scenarios and asked to describe their concerns and management strategies. RESULTS: 95 interdisciplinary pain and palliative care specialists were contacted; 37 agreed to participate (38.9%). Analysis of interview contents revealed several central themes: (1) widespread discomfort and anxiety regarding safe and compassionate opioid prescribing for high-risk patients, (2) belief that widely used risk-mitigation tools such as opioid contracts and urine drug screens provided inadequate support for decision-making, and (3) lack of institutional and organizational support and guidance for safe prescribing strategies. Most clinicians reported self-education regarding addiction and alternative prescribing/pain management strategies. Providers varied widely in their willingness to discontinue opioid prescribing in a patient with aberrant behavior and pain associated with life-limiting illness. CONCLUSION: Providers caring for patients demonstrating ADB and cancer-related pain struggle to balance safe prescribing with symptom management. Increased guidance is needed regarding opioid prescribing, monitoring, and discontinuation in high-risk patients.

Top Ten Tips Palliative Care Clinicians Should Know About the Physical Manifestations of Psychiatric Illness and Treatment.

Addressing the psychiatric aspects of serious illness in palliative care (PC) is crucial to both care delivery and outcomes. Psychiatric comorbidities are common among patients with PC needs and can significantly impact their total burden of symptomatic distress, overall quality of life, functional independence, and healthcare utilization. Yet, these aspects of care are often deferred to mental health consultant teams in the context of busy PC services and often limited human resources. To provide comprehensive and person-centered care, PC clinicians must understand the interplay between medical conditions and psychiatric presentations within a biopsychosocial framework to respond empathically, efficiently, and effectively. This article is the first of a two-part series developed in collaboration with a group of psychiatric-palliative care specialists. This article explores ten common physical manifestations of psychiatric illness and treatment among patients facing serious illnesses. The second article will provide pragmatic tips PC clinicians should know about the psychiatric manifestations of nonpsychiatric serious illness and treatment. Combined, these two articles support a holistic approach that PC clinicians can use to prioritize and integrate both mental and emotional well-being throughout the continuum of serious illness.

Top Ten Tips Palliative Care Clinicians Should Know About the Psychiatric Manifestations of Nonpsychiatric Serious Illness and Treatments.

Mental health issues are widespread and significant among individuals with serious illness. Among patients receiving palliative care (PC), psychiatric comorbidities are common and impact patient quality of life. Despite their prevalence, PC clinicians face challenges in effectively addressing the intricate relationship between medical and psychiatric disorders due to their complex, intertwined and bidirectionally influential nature. This article, created collaboratively with a team of psychiatric-palliative care experts, is the second in a two-part series examining the bidirectional relationship between medical and psychiatric illness in PC. This article explores 10 prevalent psychiatric manifestations associated with severe illness and its treatment. Building upon the first article, which focused on 10 common physical manifestations of psychiatric illness among patients receiving PC, these two articles advocate for an integrated approach to PC that prioritizes mental and emotional wellbeing across the continuum of serious illness.

Palliative Care for Patients With Cancer: ASCO Guideline Update.

PURPOSE: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. METHODS: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. RESULTS: The literature search identified 52 relevant studies to inform the evidence base for this guideline. RECOMMENDATIONS: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

Racial and ethnic diversity in academic nursing leadership: A cross-sectional analysis.

BACKGROUND/PURPOSE: To characterize the representation of racial and ethnic minoritized faculty in leadership positions at the top 50 National Institutes of Health-ranked academic nursing institutions. METHODS: We conducted a cross-sectional observational study to characterize the racial/ethnic composition of academic leaders, including those in diversity, equity, and inclusion (DEI) positions from September 2020 to December 2020. DISCUSSION: Among the 409 leaders, the sample was predominantly composed of females (86.6%), White leaders (80.9%), affiliated with public institutions (75.1%), and in the southern region (42.1%). Exactly 13.6% were from minoritized groups. Minoritized leaders were less likely to hold dean and higher executive positions than their nonminoritized counterparts (p < .002). DEI leadership positions were mostly concentrated in lower executive positions (e.g., director) and primarily consisted of minoritized leaders (>60%). CONCLUSION: Underrepresentation of racial and ethnic minoritized individuals in academic nursing leadership persists, necessitating structural interventions within nursing academia to promote inclusivity. Achieving this goal requires a concerted investment in diversifying academic nursing leadership and ensuring positions that minoritized leaders are in, hold weight.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

The Strength It Takes to Suffer.

This essay describes an intensive care and palliative medicine physician's decision to elect medical aid in dying.

Investing in bereavement care as a public health priority.

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

Palliating Serious Illness During Disasters and Public Health Emergencies.

ABSTRACT: The increase in disasters and public health emergencies in recent years is a serious public health concern. The needs of suffering victims can be multifaceted, particularly the needs of those who are from systematically marginalized populations. Palliative care nurses play a vital role in mitigating the suffering of those affected by these events. Despite the acute need, there is a lack of nurses who specialize in hospice and palliative care and generalist nurses are not sufficiently prepared to provide palliative care during disasters and public health emergencies. Nurses and nursing students should use national and global resources and training opportunities to hone their palliative care skills as well as learn self-care skills to increase their resiliency. Outcomes from research and collaborative efforts should be used to educate the future nursing workforce and advocate for equitable delivery of quality palliative care for all people who are affected by disasters and public health emergencies.

The role of spirituality in pain experiences among adults with cancer: an explanatory sequential mixed methods study.

PURPOSE: Foundational research demonstrates that spirituality may affect the way people with cancer experience pain. One potential route is through alterations in thoughts and beliefs, such as pain-related catastrophizing. The purpose of this study is to understand whether spirituality impacts pain experiences through pain-related catastrophizing. METHODS: This explanatory sequential mixed methods study was informed by an adapted Theory of Unpleasant Symptoms. Data were collected via online surveys (N = 79) and follow-up qualitative interviews (N = 25). Phase 1 employed Empirical Bayesian analysis. Phase 2 used deductive content analysis. Phase 3 involved creating a mixed methods joint display to integrate findings and draw meta inferences. RESULTS: Results indicate that total spiritual well-being was directly negatively associated with pain-related catastrophizing, and indirectly negatively associated with the outcomes of pain interference, pain severity, and pain-related distress. Qualitative categories highlight the supportive role of spirituality when facing pain, while also shedding light on the limitations of spirituality in the context of some pain (i.e., severe, neuropathic, and/or chronic). Mixed methods findings reveal the importance of spirituality for some people as they face cancer and cancer-related pain, as well as the need for integrating spirituality as part of a larger pain management plan. CONCLUSIONS: This research advances supportive cancer care by exploring the complex role of spirituality in pain experiences. Findings will inform further exploration into the role of spirituality in supporting holistic symptom management in the context of cancer, as well as developing and testing interventions to enhance spirituality and address symptom-related suffering.

Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.

Measuring palliative care integration in Malawi through service provision, access, and training indicators: the Waterloo Coalition Initiative.

BACKGROUND: Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi's Waterloo Coalition Initiative (WCI) - a local project promoting palliative care integration through service development, staff training, and increased service access. METHODS: Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. RESULTS: 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. CONCLUSION: Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level.

A Qualitative Study of the Pain Experience of Black Individuals With Cancer Taking Long-Acting Opioids.

BACKGROUND: Little is known about the experience of Black individuals with cancer taking long-acting opioids for cancer pain. OBJECTIVE: This study aimed to describe the day-to-day experience of living with pain and the experiences of taking opioids for pain management among Black individuals with cancer prescribed with long-acting opioids. METHODS: This qualitative descriptive study was part of a larger investigation focused on opioid adherence. Participants (N = 14) were interviewed using a semistructured interview guide. Analysis followed conventional content analysis and constant comparison approaches. Sociodemographics, clinical information, and the Brief Pain Inventory form were collected. RESULTS: The majority of the subsample was female (64.3%), not married (78.6%), and with a median age of 52.5 years. Participants were taking either MS Contin (85.7%) or OxyContin (14.3%). The Brief Pain Inventory median "average" pain severity scores and pain interference scores were 5.1/10 (interquartile range [IQR] = 6.1) and 3.5/10 (IQR = 6.7), respectively. Three themes are reported from the analyses: desire for control, barriers to pain relief, and isolation versus connectedness. CONCLUSION: Our findings highlight the persistent nature of moderate to severe cancer pain and how pain and its treatment interfere with patients' lives. The findings describe ways that patients learn to manage and exert control over pain despite conflicting attitudes and dealing with opioid stigma. IMPLICATION FOR PRACTICE: Clinicians should partner with patients with cancer, especially people of color, who may experience intersecting stigmas related to their cancer pain and opioid use, to best provide an individualized and culturally sensitive pain treatment plan.

Development of a Communication Skills Training to Enhance Effective Team Communication in Oncology.

INTRODUCTION: Effective communication among members of health care teams is essential to provide quality and patient-centered care, yet many people identify this as a challenge. We developed, implemented, and conducted a preliminary evaluation of a training to enhance communication within oncology teams. METHODS: This training identifies key strategies, communication skills, and process tasks recommended to achieve the goal of using a collaborative approach to navigate communication interactions across members of the hospital team to enhance patient care outcomes and increase team effectiveness. Forty-six advanced practice providers (APPs) participated and completed an evaluation of the module. RESULTS: Eighty-three percent of participants identified as female and 61% were White. Eighty-three percent of participants were nurse practitioners and 17% were physician assistants. The module was highly rated. Participants responded that they were satisfied ("agree" or "strongly agree") on 16 of 17 evaluation items (80% or higher). DISCUSSION: APPs were satisfied with the course and found many aspects useful in learning and practicing skills to improve their communication with other team members to enhance their care of patients. Training with this module and other communication approaches are needed for health care professionals of all types to encourage more consistent and meaningful communication with their colleagues to improve patient care.

Top 10 Tips Palliative Care Clinicians Should Know About Messaging for the Public.

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.