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On 3–4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: “healing hearts and communities.” We describe lessons learned in anticipation of the fourth annual conference to be held on 3–4 October 2023.
Description of the third annual event, conference planning team reflection, and attendee evaluation responses.
The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event.
Significance of results
The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.
On October 5–6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: “Leave No One Behind — Equity in Access to Palliative Care.” We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3–4, 2022.
Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses.
The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines.
Significance of results
The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.
The objectives of this study were to obtain patient evaluations of the content, structure, and delivery modality of Meaning-Centered Pain Coping Skills Training (MCPC), a novel psychosocial intervention for patients with advanced cancer and pain. MCPC aims to help patients connect with valued sources of meaning in their lives (e.g., family relationships), while providing training in evidence-based cognitive and behavioral skills (e.g., guided imagery) to reduce pain.
Semi-structured interviews were conducted with 12 patients with stage IV solid tumor cancers and persistent pain. Transcripts were analyzed using methods from applied thematic analysis.
When evaluating MCPC's educational information and skills training descriptions, participants described ways in which this content resonated with their experience. Many coped with their pain and poor prognosis by relying on frameworks that provided them with a sense of meaning, often involving their personally held religious or spiritual beliefs. They also expressed a need for learning ways to cope with pain in addition to taking medication. A few participants offered helpful suggestions for refining MCPC's content, such as addressing common co-occurring symptoms of sleep disturbance and fatigue. Concerning MCPC's structure and delivery modality, most participants preferred that sessions include their family caregiver and described remote delivery (i.e., telephone or videoconference) as being more feasible than attending in-person sessions.
Significance of results
Participants were interested in an intervention that concurrently focuses on learning pain coping skills and enhancing a sense of meaning. Using remote delivery modalities may reduce access barriers (e.g., travel) that would otherwise prevent many patients from utilizing psychosocial services.
Chimeric antigen receptor T cells are used in the treatment of B-cell leukemias. Common chimeric antigen receptor T-cell toxicities can range from mild flu-like symptoms, such as fever and myalgia, to a more striking neuropsychiatric toxicity that can present as discrete neurological symptoms and delirium. We report here two cases of chimeric antigen receptor T-cell neuropsychiatric toxicity, one who presented as a mild delirium and aphasia that resolved without intervention, and one who presented with delirium, seizures, and respiratory insufficiency requiring intensive treatment. The current literature on the treatment and proposed mechanisms of this clinically challenging chimeric antigen receptor T-cell complication is also presented.
Effective management of pain in patients with advanced cancer may benefit from a multidisciplinary approach, enlisting expertise from a wide variety of clinical specialties, including neurology, neurosurgery, anesthesiology, and rehabilitation medicine. The use of psychiatric interventions in the treatment of cancer patients with pain also has become an integral part of such a comprehensive approach. This chapter reviews the assessment and management of one of the most common psychiatric disorders, depression, which has been shown to interact with and exacerbate pain among cancer patients.
Multidimensional concept of pain in cancer
Pain, especially in advanced cancer, is not a purely nociceptive or physical experience, but rather, it involves complex aspects of human functioning, including personality, affect, cognition, behavior, and social relations. Dame Cecily Saunders coined the term total pain to capture the all-encompassing nature of the suffering and discomfort that individuals with a terminal illness often experience. Given the conceptualization of pain as a multidimensional construct, it perhaps is not surprising that the use of analgesic drugs alone does not always lead to complete pain relief. As the interactions of cognitive, emotional, socioenvironmental, and nociceptive aspects of pain are difficult to separate, effective pain treatment often involves a multimodal intervention. Disentangling and addressing both the physical and the psychological issues underlying each patient's pain are essential to developing rational and successful management strategies. Applying psychosocial and somatic therapies in conjunction can lead to reciprocal effects.
Children born with heterotaxy syndromes have poorer outcomes compared with children born with comparable cardiac lesions requiring similar surgical palliation. Heterotaxy has been reported as a separate risk factor for mortality and increased morbidity in a series of Fontan operations reported from single centres. Little is known, however, about the functional state of surviving patients with heterotaxy following a Fontan operation.
In the multicentric cross-sectional study carried out by the Pediatric Heart Network of 546 survivors of the Fontan procedure, the patients, aged from 6 to 18 years, underwent evaluation by echocardiography, exercise testing, electrocardiography, magnetic resonance imaging, and functional health status questionnaires compiled by the patients and their parents. Heterotaxy was identified in 42 patients (8%). Medical and patient characteristics were compared between those with heterotaxy and the remaining 504 patients who did not have heterotaxy.
Patients with heterotaxy had their Fontan procedure performed at a later age, with a median of 3.9 years versus 2.8 years (p = 0.001) and had volume-unloading surgery performed later, at a median age of 1.4 versus 0.9 years (p = 0.008). These patients had significantly different ventricular and atrioventricular valvar morphology, as well as a higher incidence of systemic and pulmonary venous abnormalities. They had a higher incidence of prior surgery to the pulmonary veins, at 21 versus 0.4%. The type of Fontan procedure was different, but no difference was detected in length of stay in hospital, or the number of postoperative complications. Sinus rhythm was less common, at 44 versus 71%, (p = 0.002), and history of atrial arrhythmias more common, at 19 versus 8%, (p = 0.018) in those with heterotaxy. Echocardiography revealed a greater degree atrioventricular valvar regurgitation, lower indexed stroke volume, and greater Tei index. Exercise performance, levels of brain natriuretic peptide in the serum, and summary and domain scores from health status questionnaires, were not different from those not having heterotaxy.
The study illustrates a profile of characteristics, medical history, functional health state, and markers of ventricular performance in patients with heterotaxy after the Fontan procedure. Despite obvious anatomic differences, and some differences in echocardiography and heart rhythm, there were no important differences in exercise performance or functional health state between these patients and other survivors of the Fontan procedure.
Effective management of pain in patients with advanced cancer may benefit from a multidisciplinary approach, enlisting expertise from a wide variety of clinical specialties including neurology, neurosurgery, anesthesiology, and rehabilitation medicine (1–3). The use of psychiatric interventions in the treatment of cancer patients with pain and depression has now also become an integral part of such a comprehensive approach (1–5). This chapter reviews the assessment and management of depression in the patient with cancer pain.
Multidimensional concept of pain in cancer
Pain, especially in advanced cancer, is not a purely nociceptive or physical experience, but involves complex aspects of human functioning including personality, affect, cognition, behavior, and social relations (6). A more enlightened description of the pain resulting from a terminal illness coined by Cecily Saunders (7) is “total pain,” a label that attempts to describe the all-encompassing nature of this type of pain. It is important to note that the use of analgesic drugs alone does not always lead to pain relief (8). Syrjala and Chapko (9) demonstrated that psychological factors play a modest but important role in pain intensity. As the interactions of cognitive, emotional, socioenvironmental, and nociceptive aspects of pain are inseparable, the multidimensional nature of pain demands for a multimodal intervention (3). The challenge of untangling and addressing both the physical and psychological issues involved in pain is essential to developing rational and effective management strategies. Psychosocial therapies directed primarily at psychological variables have a profound impact on nociception, whereas somatic therapies directed at nociception have beneficial effects on the psychological aspects of pain.
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