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.
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.
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.
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.
Bereavement , Hospice Care , Humans , Health Priorities , Public Health , Social Support
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.
This essay describes an intensive care and palliative medicine physician's decision to elect medical aid in dying.
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.
Cancer Pain , Neoplasms , Spiritual Therapies , Adult , Humans , Spirituality , Bayes Theorem , Pain/complications , Cancer Pain/therapy , Cancer Pain/complications , Neoplasms/complications
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.
Disasters , Hospices , Humans , Emergencies , Public Health , Palliative Care
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.
Hospice Care , Palliative Care , Humans , Malawi , Cross-Sectional Studies , Pain
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.
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.
Cancer Pain , Chronic Pain , Neoplasms , Humans , Female , Middle Aged , Analgesics, Opioid/therapeutic use , Cancer Pain/drug therapy , Pain/drug therapy , Pain Management , Neoplasms/complications , Neoplasms/drug therapy
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.
Communication , Learning , Humans , Female , Health Personnel , Hospitals , Patient Care Team
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.
Death , Palliative Care , Humans
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.
Palliative Care , Respect , Humans , Delivery of Health Care , Patients , Death
Background: Antimicrobials are frequently administered at end-of-life (EOL) and their non-beneficial use may subject patients to unnecessary harms. Studies analyzing factors for antimicrobial prescribing in solid tumor cancer patients at the EOL are lacking. Thus, we aimed to identify factors and patterns associated with antimicrobial use in hospitalized adults with cancer at EOL. Methods: We used a retrospective cohort design to review electronic medical records of terminal hospitalized patients ≥18 years with solid tumors admitted to non-intensive care units in a metropolitan comprehensive cancer center during 2019 and assessed antimicrobial use in the last 7 days of life. Results: Among 633 cancer patients, 59% (n = 376) received antimicrobials (AM+) within the last 7 days of life. AM + patients were older (P = .012), mostly of male gender (55%), and non-Hispanic ethnicity (87%). AM + patients were significantly more likely to have a foreign device, suspected signs of infection, neutropenia, positive blood culture result, documented advance directive; receive laboratory or radiologic testing, and a palliative care or infectious disease consultation (all P < .05). No statistically significant differences were observed in the presence of documented goals of care discussions, or EOL discussions/EOL care orders. Conclusion: Antimicrobial use at the EOL is common in solid tumor cancer patients at the EOL and is associated with increased utilization of invasive interventions. There is an opportunity for infectious disease specialists to build primary palliative care skills and partner with antimicrobial stewardship programs to better advise patients, decision makers, and primary teams on the use of antimicrobials at the EOL.
Anti-Infective Agents , Communicable Diseases , Neoplasms , Terminal Care , Adult , Humans , Male , Retrospective Studies , Palliative Care , Neoplasms/drug therapy , Neoplasms/diagnosis , Death , Anti-Infective Agents/therapeutic use
Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.
Acute myeloid leukemia (AML) is the most common form of acute leukemia in adults. Rapidly proliferating leukemic cells cause symptoms and increase the risk of infection. While individuals may initially benefit from supportive measures, disease-directed therapy may ultimately be required for symptom management, even at the end of life, although this may also inadvertently increase symptom burden. This unpredictable illness trajectory complicates prognostic uncertainty and the timing of hospice referral, which may prohibit access to palliative therapies and lead to recurrent hospitalizations. However, emerging evidence demonstrates that early palliative care (PC) integration with standard leukemia care results in improved quality of life, psychological outcomes, and greater participation in advance care planning. To orient PC clinicians asked to care for patients with AML, this article highlights 10 salient considerations.
