Interdisciplinary Palliative Care Team Research Articles

Art Therapy and Narrative Therapy Interventions for Pain Management: A Case Study with a Post-Quadruple Amputation Oncology Patient.

This case discussion describes the use of an expanded interdisciplinary palliative care team structure that integrated art therapy and narrative therapy to meet the needs of a woman with a history of chronic pain and Burkitt lymphoma, who had received quadruple amputation due to complications of treatment. The concurrent interventions of art therapy, narrative therapy, and traditional palliative care consultation services resulted in high-quality, trauma-informed care, contributing to effective psychosocial coping and enhanced total pain management. The addition of expressive therapeutic modalities to inpatient palliative care consultation requires close collaboration and may be particularly valuable when addressing complex needs in the setting of prolonged hospitalizations.

Improving the detection and documentation of patients’ symptoms in an integrated gastrointestinal oncology and palliative care clinic.

336 Background: Patients with gastrointestinal (GI) malignancies experience a high burden of disease-related symptoms and treatment side effects. We established an integrated GI oncology and palliative care (PC) clinic in which a PC physician is co-located with the oncology team and can provide timely response to patient distress and facilitate communication with the interdisciplinary palliative care team. Yet, even in the integrated clinic, patient symptoms were unreliably assessed, leading to missed opportunities to address patient suffering. Between October 2023 and January 2024 for patients seen in-person in the integrated clinic for oncology or PC visits, the median rate of symptom documentation was 45%. Emotional, financial, and spiritual distress documentation rates were lowest. We hypothesized that by implementing a systematic, comprehensive patient-reported symptom assessment tool, we could increase the detection and documentation of symptoms, and in turn, improve communication around patient distress and timely response to symptoms. Methods: We measured the rate of symptom documentation (primary outcome) and the use of a patient-reported symptom assessment tool for adults with GI cancers seen in-person in the integrated clinic in Spring 2024. Based on the Edmonton Symptom Assessment Scale (ESAS) and expert consensus, we determined which symptoms were most important to identify. Documentation rates were assessed via manual chart review of visit notes and flowsheet data. Prospective post-intervention data (March to May 2024) were compared to retrospective pre-intervention baseline data (October 2023 to January 2024). Interventions included modification of the ESAS to include GI oncology-specific symptoms, implementation of the tool in paper format to encourage patient-clinician communication, frequent staff education and feedback sessions, creation and dissemination of a resource guide for clinicians to respond to identified distress, and patient satisfaction surveys. Results: 126 patients were included in the study (31 pre-intervention and 95 post-intervention). During the post-intervention period, the median rate of symptom documentation increased from 45% to 83% and the median rate of ESAS survey completion increased from 9% to 68%. Documentation of financial and spiritual distress increased from 13% to 71%, for both, and documentation of emotional distress increased from 35% to 72%. On satisfaction surveys (N=20), most patients reported the tool was helpful in sharing their symptoms (70%), was easy to read and understand (100%), and that their clinician was engaged in addressing their symptoms (67%). Conclusions: The implementation of a patient-reported symptom assessment tool in an integrated GI oncology/PC clinic increased documentation of important symptoms, potentially increasing clinician awareness of patient distress.

Palliative Care Interdisciplinary Teams in Acute Care Hospitals and Cancer Centers: A Job for Sisyphus.

Palliative Care Interdisciplinary Teams in Acute Care Hospitals and Cancer Centers: A Job for Sisyphus.

Palliative Care for Patients With Cancer: ASCO Guideline Update.

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. 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. The literature search identified 52 relevant studies to inform the evidence base for this guideline. 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.

A Weekly Multiple-Choice Quiz for Continuing Education in a Palliative Care Interdisciplinary Team

A Weekly Multiple-Choice Quiz for Continuing Education in a Palliative Care Interdisciplinary Team

Supporting the Ambulatory Palliative Care Interdisciplinary Team with an Embedded Psychiatrist: A Case Series

Supporting the Ambulatory Palliative Care Interdisciplinary Team with an Embedded Psychiatrist: A Case Series

Identifying the Unmet Needs of People Living With Amyotrophic Lateral Sclerosis: A National Survey to Inform Interdisciplinary Palliative Care.

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy.

The value equation for specialist palliative care: design and delivery principles.

The value of specialist palliative care (SPC) is multi-faceted. Patients, families, healthcare providers, health systems and payors all benefit in different ways when SPC is included in the care of those with serious illness; they all have a shared interest in the availability and success of SPC. We propose a new value equation for SPC: SPC services must employ optimal design and standardized delivery of SPC to ensure that the payment model, care model, and needs of the patients are all aligned; and suitable payment models are necessary to provide stable, sustainable resources for the interdisciplinary palliative care teams; when these conditions are met, the cascade of beneficial outcomes of SPC can be produced reliably. We propose a set of 10 design and delivery principles describing these inputs and outcomes, applicable to SPC in all settings-hospital, clinic, and home. Amidst shifts in health policy and financing, the SPC field in the US continues to evolve with new innovations, additional evidence, and a clearer vision of what is valuable. An enduring component of the value equation of SPC continues to be the moderation of the total cost of care for payors. This articulation of the value equation for SPC is based on evidence and experience of palliative care providers and payors in the US, but the framework and principles are likely useful to guide and evaluate SPC in other countries as well.

The role of specialty palliative care interdisciplinary team members in acute care decision support: a qualitative study protocol

BackgroundSpecialty palliative care interdisciplinary teams (IDT) can play an important role in supporting patients and family members during acute care decision-making. Despite guidelines and evidence emphasizing decision-making support as a key domain of specialty palliative care, little is known about how decision-making support is actually implemented by specialty palliative care IDTs. This study aims to (1) describe the structure and processes of inpatient decision-making support delivered by specialty palliative care IDT, and (2) examine the perspectives of IDT members on their role in this decision-support.MethodsA team of clinician and non-clinician researchers will conduct non-participant observation ethnography at a single medical center in northern New England. The ethnography will focus on the work of IDT members in supporting decision making, particularly elements of specialty palliative care that have limited descriptions in the literature (e.g. systems and processes of care). Observations of formal and informal interactions between IDT members and clinical encounters will be conducted at one site over four months. Participants include patients, care partners, non-specialty palliative care providers, and specialty palliative care IDT members. Additionally, we will conduct semi-structured interviews with IDT members across three geographically diverse specialty palliative care teams across the United States to explore providers’ first-person perspective on their roles and function in decision-making support for hospitalized patients. Field notes and transcripts from observation and interviews will be uploaded to Dedoose software for management and thematic analysis following an inductive approach.DiscussionTo our knowledge, this will be the first observational study of the roles of interdisciplinary specialty palliative care teams. Results from this research will support further investigation into implementation of decision-making support across different types of medical teams.

The growth of social work in palliative and end-of-life care in the United States: how did we get here?

A historical look back at the 'beginnings' of palliative social work in the United States provides a lens through which to view current areas of focus and future trends in hospice and palliative care with the objective of emphasizing the need for equitable practice approaches. The background and formative efforts to establish palliative social work in the United States as a specialty field of practice were scaffolded by the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and two Social Work Leadership Summits on End-of-Life and Palliative Care, which help to explain how we got here. In the development of the social work role in providing palliative and end-of-life care for individuals who are seriously ill and their families, several important functions unfolded naturally as part of our practice repertoire as professionals. Practitioners, researchers, advocates, policy developers, and more have advanced the field and strengthened palliative social work, especially as the profession addresses inequities and promotes quality of life. Social workers' administrative reports, academic literature, professional standards and educational programs, assessment tools, and evidence-informed practice interventions contribute to illuminating the roles that social workers have on interdisciplinary palliative care teams, while emphasizing the importance of leadership development. Social workers in palliative and end-of-life care are on a firm ground from which to move forward into the ever-evolving future of providing essential quality care at such a critical time in life.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

PurposeTo describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents.MethodsA qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed.ResultsThis study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care.ConclusionsDescribing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

A Cerebellar Catastrophe in the Hospice Ward: How a Patient with Cerebellar-Metastatic Breast Cancer with Multiple Manifestations of Cerebellar Disease was Effectively Treated by an Interdisciplinary Palliative Care Team (CS309)

A Cerebellar Catastrophe in the Hospice Ward: How a Patient with Cerebellar-Metastatic Breast Cancer with Multiple Manifestations of Cerebellar Disease was Effectively Treated by an Interdisciplinary Palliative Care Team (CS309)

Interprofessional primary palliative care: Do the AACN Essentials prepare nurses for collaborative practice?

Palliative care specialists alone cannot meet the rising needs for palliative care. Primary palliative care, delivered interprofessionally by generalist health professionals, is essential to ensure equitable access. Educational competencies and clinical practice guidelines prepare these clinicians to integrate palliative care principles into practice. The purpose of this project was to evaluate how the AACN Essentials prepares entry-level professional nursing students to function as members of the interdisciplinary primary palliative care team, as described in the National Consensus Project (NCP) for Quality Palliative Care Clinical Practice Guidelines. A team of nurse educators utilized a crosswalk mapping process with the Essentials domains, the Competencies and Recommendations for Educating Undergraduate Nursing Students (CARES) statements, and the NCP Guidelines. All eight of the NCP domains align with the Essentials. There were clear areas of overlap between the documents and unique areas of emphasis. This project identifies how educational competencies and clinical guidelines can guide competent palliative care practice. It also describes how nurses are prepared to collaborate in the delivery of palliative care.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

Peculiarities of pulmonary rehabilitation in patients with chronic respiratory diseases in palliative and hospice care (review)

Pulmonary rehabilitation is an interdisciplinary program of care for patients with chronic respiratory disorders, created individually and aimed at physical and social indicators and autonomy optimizing. Physical therapists in an interdisciplinary palliative care team are key to the success of pulmonary rehabilitation for palliative patients, focusing on the physical functioning.Objective — to review the data from literature references regarding the characteristics and usage frequency of pulmonary rehabilitation for patients with respiratory diseases who require palliative and hospice care, and to specify respiratory diseases in palliative care patients for which pulmonary rehabilitation is currently used. As a result of the literature review, it was established that pulmonary rehabilitation in patients with chronic respiratory diseases who require palliative and hospice care is aimed at improving pulmonary symptoms (shortness of breaths) and functional status, reducing the intensity of accompanying symptoms, even in the late stages of the disease, which ultimately contributes improving the quality of life and survival of patients, reducing the burden on those who care for them. But access to physical (pulmonary) rehabilitation for patients with chronic respiratory diseases who need palliative and hospice care, is currently not routine in practice and not used enough around the world, unfortunately. It was found that today pulmonary rehabilitation in palliative patients is used only for chronic obstructive pulmonary diseases, interstitial lung diseases, cystic fibrosis, sarcoidosis, idiopathic pulmonary fibrosis and bronchiectasis. At the same time, the literature does not describe the use of physical therapy methods, including pulmonary rehabilitation, in patients with bronchial asthma who require palliative treatment. Pulmonary rehabilitation in patients with chronic respiratory diseases who require palliative and hospice care is a relevant and effective method of treatment, but needs wider implementation in the modern health care system.

Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Competencies for quality spiritual care in palliative care in Latin America: from the Spirituality Commission of the Latin American Association for Palliative Care.

Spiritual care is an essential part of quality palliative care. However, the literature regarding spiritual care competencies in Latin America is limited. Herein we propose the basic quality standards for spiritual care in palliative care according to best professional practices and provide a common vocabulary and required competencies for quality clinical spiritual care. Both elements, quality standards and a common vocabulary, are part of an essential step implementing continuous educational initiatives among interdisciplinary palliative care teams in Latin America. Members of the Spirituality Commission of the Latin American Association for Palliative Care and three members of independent professional palliative care organizations identified and reviewed our proposed spiritual care competencies and created a consensus document describing the competencies for general spiritual care. In the context of palliative care in Latin America, general spiritual care is provided by members of interdisciplinary teams. We proposed six competencies for high-quality general spiritual care and their observable behaviors that every member of an interdisciplinary palliative care team should have to provide quality clinical spiritual care in their daily practice: (I) personal, spiritual, and professional development; (II) ethics of spiritual care; (III) assessment of spiritual needs and spiritual care interventions; (IV) empathic and compassionate communication; (V) supportive and collaborative relationships among the interdisciplinary team; and (VI) inclusivity and diversity.

Building Palliative Care Quality Improvement Team Cohesion

Background: The Palliative Care: Promoting Access in International Cancer Experience initiative (PC-PAICE) partnered with seven regionally diverse Indian palliative care (PC) sites to foster locally initiated quality improvement (QI) projects by training local teams on QI methods. We aimed to identify facilitators of QI team cohesion around team goals. Methodology: A quota sampling approach captured the perspectives of 44 stakeholders across 3 strata (organizational leaders, clinical leaders, and clinical team members) through a semi-structured interview guide informed by the Consolidated Framework for Implementation Research (CFIR). We used a combination of inductive and deductive approaches informed by theory to identify themes. Results: Theme 1: Allow a process to formalize and re-negotiate team roles and coordinate transfer of roles within the interdisciplinary PC team. Theme 2: Foster cross-disciplinary role agreement around shared and bounded QI project goals. Theme 3: Prioritize a non-hierarchical organizational climate of equity and respect for all PC team member involvement and input in the QI project work. Implications: Leveraging CFIR with role and team theories allowed us to identify facilitators of team cohesion, such as promoting a culture of equity and setting clear project goals. These insights demonstrate the value of team and role theories in implementation evaluation.

Psychological Aspects of Care in Cancer Patients in the Last Weeks/Days of Life.

Palliative care is comprised of an interdisciplinary team (IDT) approach with members from different disciplines who collaboratively work together to reduce multidimensional components of pain and suffering and improve quality of life for patients coping with a terminal illness. Psychosocial team members are integral to the palliative care IDT and provide expertise in assessment and empirically validated interventions to address psychological distress. The following paper will provide a review of different facets of psychological distress experienced by advanced cancer patients such as psychological disorders, existential distress, spiritual distress, caregiver distress, parental distress, and grief. Finally, an overview of commonly used screening and assessment tools as well as psychological interventions relevant for the palliative care population is presented.

"Doing palliative care with my hands tied behind my back": telepalliative care delivery for oncology inpatients during a COVID-19 surge.

New York City was a “global COVID-19 hotspot” in spring 2020. Many health teams rapidly transitioned to telehealth platforms. Little is known about the experiences of inpatient palliative care services who delivered telehealth services during the pandemic. This study was aimed to explore the experiences of an interdisciplinary palliative care team in meeting the holistic needs of oncology inpatients via telehealth over a 10-week period during the first COVID-19 surge. A targeted sample of interdisciplinary palliative specialists at an urban comprehensive cancer center participated in in-depth interviews that explored participants’ experiences delivering physical, psychosocial, and spiritual care via telehealth. An interdisciplinary coding team followed a rigorous thematic text analysis approach and met regularly to reach consensus on emerging themes. Eleven palliative specialists from six disciplines (chaplaincy, medicine, nursing, pharmacy, physician assistant, and social work) participated. Seventy-three percent reported not receiving telehealth training prior to COVID-19 and 64% were “not at all” or “somewhat comfortable” delivering telepalliative care. Several themes were identified, including the barriers related to telehealth, the impact of telehealth on the quality of relationships with patients, their families, and coworkers, and the changes in perceived self-efficacy of fulfilling job responsibilities. Telehealth use has increased significantly during COVID-19, requiring further evaluation of its utility. Participants reported both positive and negative inpatient telepalliative care experiences associated with various domains of professional functioning, such as communication, relationships with key stakeholders, and self-efficacy. Enhanced telehealth training and support must be improved to sustain the palliative workforce and promote high-quality patient and family care in the future.