Palliative Oncology Research Articles

The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care.

Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n=112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.

Palliative oncology and palliative care.

New therapeutic approaches can produce promising results even in severely ill cancer patients. But they also pose new challenges with respect to prognostication, as patients who were once not eligible for treatment, due to age or comorbidities, now are. Palliative oncology constitutes a major part of oncological care, with life prolongation and quality of life as its main goals. Palliative care specialists are experts in symptom control and psychosocial and existential support, and the integration of their expertise early on in patient care can prolong survival. In this article, I discuss the need to integrate specialist palliative care into early cancer treatment plans to achieve quality of life for patients. I also discuss the ways in which palliative care specialists balance the benefits of novel treatments against their adverse effects for patients, particularly for the elderly, the frail and those in advance stages of disease. I highlight the need to ensure equal access to palliative care to improve cancer patients' quality of life but also why futile, burdensome treatments should be avoided especially in the frail, elderly patients. Further, I discuss benefits and problems related to nutritional support in patients with cachexia and exemplify why translational research is needed to link basic research with clinical oncology and effective symptom control.

Training for Wellness in Pediatric Oncology: A Focus on Education and Hidden Curricula.

Pediatric oncologists have the privilege of caring for children and families facing serious, often life-threatening, illnesses. Providing this care is emotionally demanding and associated with significant risks of stress and burnout for oncologists. Traditional approaches to physician burnout and wellbeing have not emphasized the potential roles of education and training in mitigating this stress. In this commentary, we discuss the contribution that education, particularly in the areas of palliative and psychosocial oncology, can make in preparing oncologists for the work that they do. We argue that by adequately providing oncologists with the skills they need for their work, we can reduce their risk of burning out. We also discuss the importance of paying attention to hidden and formal curricula to ensure that messages provided in formal education programs are supported by informal training experiences.

Patterns of Communication About Serious Illness in the Years, Months, and Days before Death.

Background:Communication with patients and families about serious illness impacts quality of life and helps facilitate decision-making.Objective:To elucidate the pattern of communication about serious illness for patients who have died in an inpatient setting.Design:Three hundred patients from the Swedish Registry of Palliative Care 2015–2017 were randomly selected for manual chart review.Setting:Patients who died in a palliative care, oncology, or internal medicine unit in Sweden were selected.Measurements:We report on the frequency of conversations at three time points, 6 months or longer before death (“Years”), 15 days–6 months before death (“Months”), and 0–14 days before death (“Days”). We also report the timing of the conversation about dying.Results:A total of 249 patients were included after exclusions; they had an average of 2.1 conversations (range 1–6). The first conversation took place a median of 53 days before death and the last conversation took place a median of 9 days before death. Separate conversations with the next of kin took place a median of two days before death. We could verify a conversation about dying in only 156/249 (63%) medical records.Conclusions:Communication about serious illness between clinicians, patients, and families occurs iteratively over a period before death. Measuring the quality of communication about serious illness using a years, months, and days framework may help ensure that patients and families have sufficient information for medical and personal decision making.

Pleasure and suffering in the work of palliative oncology nurses: A reflective discursive presentation

In palliative care, nursing work is characterized by the concept of suffering as nurses cope with not only the death of patients, but also challenges with interacting with families. This suffering however, if offset by the concept of pleasure, as patients find meaning in illness, pain, and in the acceptance of death as a natural process, which generates pleasure. This reflective discursive presentation is based on the theoretical framework of Dejours’ psychodynamics of work and highlights the area of palliative oncology nursing as a source of suffering and pleasure. The daily life of palliative oncology nurses, subjectivity at work, and constant interactions between psychic, social, individual, and collective factors are discussed. In their clinical practice, palliative oncology nurses break with the prescribed way of engaging in care while building on various meanings of work that transforms and is also transformed. Considerations related to the need for teaching and research activities to examine pleasure and suffering in palliative oncology nursing is presented.

Cancer centre supportive oncology service: health economic evaluation

ObjectivesThere have been many models of providing oncology and palliative care to hospitals. Many patients will use the hospital non-electively or semielectively, and a large proportion are likely to be...

JS3-4 Consider the integration of palliative care and oncology

In the last decade, the integration of palliative care and oncology has become increasingly important. Many clinicians have repeatedly tested this integration. How is this integration implemented in practice and what does it contribute? In this presentation, I will present the evidence that has been available to date. I will then discuss the wisdom, ingenuity and problems of integration in clinical practice from the perspective of a former surgeon and current palliative care physician.

MO14-5 Development of a model for promoting palliative care education for nurses with intractable breast cancer patients

Supporting for long-term treatment of intractable cancer patients will be essential for future breast cancer treatment. The recuperation period for intractable breast cancer patients (recurrence, metastasis, drug resistance, rare cancers) in Japan can be prolonged, as is the case with chronic diseases. Thus, it has become necessary to deliver a selection of integrated palliative care and oncology nursing for individual intractable cancer patients. In this study, a basic survey was conducted to identify issues in nursing practices that integrate the latest oncology evidence with palliative care in intractable breast cancer patients.

Co-created Mobile Apps for Palliative Care Using Community-Partnered Participatory Research: Development and Usability Study.

BackgroundOpen design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation.ObjectiveThis study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer.MethodsIn-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback.ResultsKey themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement.ConclusionsThe development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.

Dexamethasone prescribing for cancer pain between palliative care and radiation oncology.

Dexamethasone is a commonly prescribed corticosteroid by both palliative care physicians and radiation oncologists for the treatment of metastatic cancer pain. However, clinical evidence for dexamethasone dose and efficacy is lacking, and prescribing between these different specialties may be influenced by other factors. This study investigates the dexamethasone prescriptions of palliative care physicians and radiation oncologists for cancer pain and their prescription rationales. Palliative care physicians and radiation oncologists in British Columbia, Canada, were surveyed on their preferred dexamethasone prescription in response to 4 case vignettes of patients with metastatic cancer and asked to choose a rationale from a list of options which were then categorized as "habit-based," "results-based," or "evidence-based." Response frequencies between the specialties were compared with odds ratios. The total daily dose and duration of dexamethasone prescriptions were similar between the specialties. Palliative care physicians were significantly more likely than radiation oncologists to prescribe a single daily dose of dexamethasone rather than a divided dose (OR 3.3 [95% CI 2.0-5.5]). This significant difference persisted when separately analyzing results at different total daily doses. Both specialties were more likely to select habit-based rationales rather than evidence-based rationales, with no significant difference between specialties. These findings show that dexamethasone prescriptions are habit-based and that prescribing habits are different between palliative care physicians and radiation oncologists. Interventions based on these findings could potentially prevent unequal patient care. Further qualitative investigations of physician perceptions are indicated to better understand habit-based corticosteroid prescribing patterns.

End-of-life care quality for children with cancer who receive palliative care.

We previously developed stakeholder-informed quality measures to assess end-of-life care quality for children with cancer. We sought to implement a subset of these quality measures in the multi-center pediatric palliative care (PPC) database. We utilized the Shared Data and Research database to evaluate the proportion of childhood cancer decedents from 2017-2021 who, in the last 30 days of life, avoided chemotherapy, mechanical ventilation, intensive care unit admissions,and >1 hospital admission; were enrolled in hospice services, and reported≤2 highly distressing symptoms. We then explored patient factors associated with the attainment of quality benchmarks. Across 79 decedents, 82% met≥4 quality benchmarks. Most (76%) reported>2 highly distressing symptoms; 17% were enrolled in hospice. In univariable analyses, patients with an annual household income ≤$50,000 had lower odds of hospice enrollment and avoidance of mechanical ventilation or intensive care unit admissions near end of life (odds ratio [OR] 0.10 [95% confidence interval (C.I.) 0.01, 0.86], p=0.04; OR 0.13 [0.02, 0.64], p=0.01; OR 0.36 [0.13, 0.98], p=0.04, respectively). In multivariable analyses, patients with an income≤$50,000 remained less likely to enroll in hospice, after adjusting for cancer type (OR 0.10 [0.01, 0.87]; p=0.04). Childhood cancer decedents who received PPC met a large proportion of quality measures near the end of their life. Yet, many reported highly distressing symptoms. Moreover, patients with lower household incomes appeared less likely to enroll in hospice and more likely to receive intensive hospital services near the end of life. This study identifies opportunities for palliative oncology quality improvement.

Integration of palliative care in oncology-the intersection of cultures and perspectives of oncology and palliative care.

Palliative care complements anti-cancer treatment, and may actually improve the therapeutic effect by optimising performance status, functioning, symptom management and quality of life, thus improving compliance to treatment. A series of randomised controlled trials investigating early integration of palliative care and oncology document clear benefits in patient-centred outcomes. Still, palliative care is often introduced late in the disease trajectory, if at all. One reason may be that that palliative care is perceived as end-of-life care only, a too common perception among healthcare providers, patients and the public alike. Another, and maybe the most important, reason is the cultural differences between the two disciplines, oncology and palliative care. While the predominant focus in oncology is treatment and cure of the disease, i.e., a tumour-centred focus, the focus in palliative care is the patient with the disease, i.e., the patient-centred approach. Integration of oncology and palliative care implies that these two cultures approach each other, collaborate and recognise that this is not an either or, but time to collaborate with the best interest of the patients. To accomplish this, an organisational model to provide optimal patient-centred palliative care is necessary at all levels. Such a model must structure the collaborations between different professions, across different levels and the patient flow between the silos in healthcare, and should describe the content of care. Using models like this is not common, and requires changes in systems and cultures on organisational, administrative, educational and individual levels. To successfully achieve profound changes is challenging. For example, it may be hampered by professional autonomy in the different disciplines and hinder collaboration and the achievement of a shared mental model. The use of standardised care pathways may be one way to integrate the tumour-centred and patient-centred approaches, reduce cultural barriers and improve patient care.

Toward a Common Goal: A Collaborative Palliative Care and Oncology Pilot Study to Expand Advance Care Planning (QI423)

<h3>Outcomes</h3> 1. Identify care gaps that exist in advance care planning (ACP) and its documentation in the electronic medical record (EMR) 2. Describe a novel, interdisciplinary approach to comprehensive ACP in oncology <h3>Background</h3> At our cancer center, 48% of patients who have a palliative intent for cancer treatment do not have any form of advance directive (AD) at the time of death. 70% of patients who do have an AD lack easily accessible documentation of an ACP conversation in the EMR. Robust ACP conversations have been shown to be associated with less aggressive medical care near death and improved quality of life.^1,2 <h3>Aim Statement</h3> 80% of identified eligible patients will complete a dedicated ACP visit. This visit will be documented in a templated note in the EMR. <h3>Methods</h3> A joint palliative care and oncology workgroup was formed to address ACP needs among patients. The group created a workflow for referrals to ACP visits and an EMR-based template for the visits. New patients with acute myeloid leukemia or genitourinary cancer were selected to participate in the pilot. After their visits, patients were asked to complete a survey on their experience. <h3>Results</h3> Over 3 months, 24 patients were identified. 22 patients (92%) were referred to the dedicated visit, 13 (54%) completed the visits, and 3 (12.5%) completed the survey. All 13 patients had a templated documentation of their discussion in the EMR after their visits. Qualitative data from the few surveys are limited, but comments have been positive. <h3>Conclusions and Implications</h3> Development of an interdisciplinary workgroup, referral workflow, and EMR template for structured ACP visits resulted in high rates of referral to these visits and universal documentation in the EMR for patients who completed the visits. Future work will focus on increasing visit completion among referred patients and expanding to other patient groups.

The First Years: An Embedded Pediatric Palliative Oncology Clinic

The First Years: An Embedded Pediatric Palliative Oncology Clinic

Interdisciplinary Perspectives on an Embedded Palliative Oncology Model in Pediatric Cancer Care

Interdisciplinary Perspectives on an Embedded Palliative Oncology Model in Pediatric Cancer Care

Efficacy of open dialogue about complementary and alternative medicine compared with standard care in improving quality of life in patients undergoing conventional oncology treatment (CAMONCO 2): protocol for a randomised controlled trial

IntroductionComplementary and alternative medicine (CAM) has been shown to reduce symptoms and adverse effects and improve quality of life of patients undergoing conventional oncology treatment, but CAM might also cause...

Advance care planning in primary care for patients with gastrointestinal cancer: feasibility randomised trial.

BackgroundAdvance (anticipatory) care planning (ACP) requires discussions between patients and healthcare professionals about planning for future deterioration in health. ACP improves care coordination but uptake is limited and often deferred.AimTo assess the feasibility and acceptability to patients, carers, and GPs of a primary care ACP intervention for people with incurable oesophageal, gastric, or pancreatic cancer.Design and settingA 12-month feasibility randomised controlled trial (RCT) in a Scottish Cancer Network.MethodPatients aged ≥18 years starting palliative oncology treatment were randomised 1:1 to an ACP intervention or standard care. Patients in the intervention group received an oncologist letter supporting them to request a GP review along with a patient information leaflet about ACP. Pre-specified analyses with masking included trial recruitment and retention, ACP completion, and quality-of-life questionnaires (EuroQol EQ-5D-5L and ICECAP Supportive Care Measure) at baseline, 6, 12, 24, and 48 weeks. Qualitative interviews with purposive sampling explored patient, carer, and GP experiences.ResultsOf 99 eligible participants (269 screened), 46% were recruited (n = 46) and randomised; 25 to intervention and 21 to control. By 12 weeks, 45% (n = 9/20) of the individuals in the intervention and 59% (n = 10/17) in the control group had a documented ACP plan. By 24 weeks, 30% (n = 14) had died; in the remaining participants quality of life was maintained at 24 weeks except for physical symptoms. Social norms associating ACP with dying were prevalent among 23 participants interviewed. No psychological or clinical harms were identified.ConclusionAn RCT of ACP for people with incurable cancer in primary care is feasible. Patient, carer, and GP attitudes and behaviours determined acceptability and timing of care planning.

Integrating home palliative care in oncology: a qualitative study to identify barriers and facilitators.

Access to and close links with home palliative care services are essential to ensure seamless transitions between care settings in anticancer treatment. However, the timing of referrals to home palliative care services is often delayed. We explored barriers to and facilitators of improving the integration of home palliative care and medical oncology experienced by healthcare professionals in Japan. This qualitative study involved semi-structured focus groups and individual interviews conducted via a web conferencing system. Participants were 27 healthcare professionals, including oncologists, palliative care physicians, home palliative care physicians, nurses from both cancer hospitals and home visit nursing agencies, and social workers from cancer hospitals. Barriers and facilitators were grouped into three themes: (1) perspectives and ideas on integrating oncology and home palliative care; (2) barriers; and (3) facilitators. Barriers included seven sub-themes: lack of referral criteria for home palliative care services; financial elements related to home palliative care services; patients' lack of understanding of the illness trajectory; collusion in doctor-patient communication about imminent death; frequent visits to cancer hospitals; variations in home palliative care services; and problems in providing treatment and care at home. Facilitators included two sub-themes: relationships between oncologists and home palliative care physicians, and cancer hospital staff experience/knowledge of home palliative care. This study identified barriers and facilitators to integrating home palliative care and oncology. Some barriers experienced by professionals were comparable with barriers to early integration of palliative care into oncology.

The potential for deprescribing in a palliative oncology patient population: a cross-sectional study

ObjectivesThe use of preventive medication in palliative oncology patients may be inappropriate due to limited life expectancy. Deprescribing tools are available but time-consuming and not always tailored to this specific...

Palliative radiotherapy delivery by a dedicated multidisciplinary team facilitates early integration of palliative care: A secondary analysis of routinely collected health data

BackgroundEarly integration of Specialist Palliative Care (SPC) with oncological care improves quality of life (QOL) of patients with advanced cancer; however, patients tend to access SPC late in their disease trajectory, if at all. Routine referral of all patients to SPC would quickly overwhelm available resources, suggesting a need for widespread accessibility of generalist PC competencies. This has been increasingly facilitated by dedicated palliative radiotherapy (PRT) clinics, such as the multidisciplinary Palliative Radiation Oncology (PRO) program at the Cross Cancer Institute (CCI). Our objectives were to estimate the proportion of patients dying with breast cancer seen in consultation for PRT, and the interaction between PRT delivery and SPC referral. MethodsThis secondary analysis of routinely collected health data examined female adults with breast cancer who died between 04/01/2013 and 03/31/2014, and had advanced disease while under the care of a CCI oncologist. Alberta Cancer Registry, electronic medical records, and Edmonton Zone Palliative Care Program data were linked. During the study period, referrals for SPC, and setting of assessment for PRT, were at the attending physicians’ discretion. Clinical data were abstracted including summaries of intervals between PRT and SPC consultations, as well as from consults to death. Kaplan-Meier survival estimates, independent samples median tests, t tests of proportions, independent t tests and Chi-square tests compared groups. ResultsOf 194 patients, median age at cancer diagnosis was 59 years (range 24-95yrs), median one-way distance from the CCI was 18.8km, and overall median survival (MS) was 4.4 years. 130/194 (67.0%) and 110/194 (56.7%) were assessed for PRT and by SPC respectively; 22/194 (11.3%) saw neither prior to death. Median time between first PRT consultation and death was 11.7 months (interquartile range 3.7-22.2 mos). Median time between first SPC consult and death was 2.9 mos (IQR 1-6.2 mos). 65.6% of those who never had PRT ultimately required SPC involvement, versus 52.3% of those receiving PRT. Of the 68/130 who had both, 91.2% were seen for PRT first, a median of 7.9 mos prior to seeing SPC. Patients who had SPC consultation without previous PRT were seen by PC a median 1.5 mos prior to death (IQR 0.6-4.9 mos). Patients seen for PRT outside of the PRO clinic had SPC consultation a median of 3.3 mos before death (IQR 1.2-6.2 mos), versus those seen by the PRO clinic team, who were referred a median of 6.2 mos prior (IQR 2.4-8.1 mos). ConclusionsFewer advanced breast cancer patients who received PRT ultimately required SPC consultation, but those who did were referred earlier in their disease course, especially if PRT assessment and delivery had taken place in the setting of a dedicated multidisciplinary team.