Benefits of Using an Early Palliative Care Intervention in Pediatric Oncology

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.

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Using Patients and Their Caregivers Feedback to Develop ENABLE CHF-PC: An Early Palliative Care Intervention for Advanced Heart Failure

Journal of Palliative Care ◽

10.1177/0825859718785231 ◽

2018 ◽

Vol 34 (2) ◽

pp. 103-110 ◽

Cited By ~ 5

Author(s):

Imatullah Akyar ◽

J. Nicholas Dionne-Odom ◽

Marie A. Bakitas

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Formative Evaluation ◽

Controlled Trial ◽

Nyha Class ◽

Complex Interventions ◽

Class Iii ◽

Early Palliative Care ◽

Care Intervention ◽

Care Assessment

Objective: Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. Method: One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient–caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. Results: Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included “allowed me to vent,” “gained perspective,” “helped me plan,” and “gained illness management and decision-making skills.” Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. Conclusion: Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.

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One Size Does Not Fit All: Exploring Dose Effect of an Early Palliative Care Intervention for Advanced Heart Failure Patients (GP800)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.04.227 ◽

2020 ◽

Vol 60 (1) ◽

pp. 304-305

Author(s):

Rachel Wells ◽

James Dionne-Odom ◽

Andres Azuero ◽

Harleah Buck ◽

Sally Engler ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Advanced Heart Failure ◽

Dose Effect ◽

Early Palliative Care ◽

Heart Failure Patients ◽

Care Intervention

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How do they view us? Oncology providers’ perceptions of early/concurrent palliative care.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.114 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 114-114

Author(s):

Dilip Sankar Babu ◽

J Nicholas Dionne-Odom ◽

Lisa Zubkoff ◽

Tasha Smith ◽

Marie Bakitas

Keyword(s):

Palliative Care ◽

Survey Instrument ◽

Early Integration ◽

Early Palliative Care ◽

Care Intervention ◽

Before And After ◽

Anticancer Treatment ◽

Original Survey ◽

Oncology Practice ◽

Oncology Providers

114 Background: Early integration of palliative care has been increasingly recognized as an important component in the care of cancer patients, including during active anticancer treatment. Yet, palliative and supportive care interventions remain to be well integrated into standard oncology practice. We sought to develop an original survey instrument in order to describe oncology providers’ perceptions of palliative care, particularly when introduced in the early and concurrent setting. Methods: We conducted a systematic review of literature pertaining to perceptions of palliative care and barriers to referral, and extracted survey items where they were found. This pool of questions was narrowed to focus on early/concurrent palliative care, and supplemented with original items. The draft survey was then systematically validated using a standardized scoring system and content-validity approach. Results: Twenty-two studies were reviewed. From an initial pool of fifty items, twenty-nine were selected for the draft survey. The draft was then reviewed by ten oncology providers, who scored each item and provided comments. Conclusions: We have produced a fully validated survey instrument that will be used to characterize oncology providers’ perceptions of early and concurrent palliative care interventions. The validated survey will be administered to oncology clinicians (including nurses, social workers and chaplains) at four academic medical centers at which an early palliative care intervention is currently being implemented. We hope to assess perceptions before and after implementation of the early palliative care intervention.

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Early palliative care intervention for women with gynecologic malignancies.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.15_suppl.e21508 ◽

2016 ◽

Vol 34 (15_suppl) ◽

pp. e21508-e21508

Author(s):

Anne R. Van Arsdale ◽

Merieme Klobocista ◽

Cristian Zanartu ◽

Priya Pinto ◽

Bruce D. Rapkin ◽

...

Keyword(s):

Palliative Care ◽

Gynecologic Malignancies ◽

Early Palliative Care ◽

Care Intervention

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The implementation of a palliative care intervention during induction chemotherapy for patients with acute myeloid leukemia (AML) at a community cancer institute.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.113 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 113-113

Author(s):

Annamaria Lattanzio-Hale ◽

Caitlyn McNaughton ◽

Wendy Wilson ◽

Heather Nelson-Przywara ◽

Shyam S. Balepur ◽

...

Keyword(s):

Palliative Care ◽

Induction Chemotherapy ◽

Clinical Pathways ◽

Treatment Protocol ◽

Community Setting ◽

Hematologic Malignancies ◽

Care Utilization ◽

Specific Patient ◽

Early Palliative Care ◽

Care Intervention

113 Background: Patients with hematologic malignancies are referred to palliative care less than patients with solid tumor malignancies. Clinical trials are underway at academic centers exploring early inpatient palliative care for patients newly diagnosed with AML receiving induction chemotherapy. Feasibility of such interventions have not been studied in a community setting. We structured a multi-faceted intervention for our community hematology and palliative team on the benefits of early palliative care in hematologic malignancies with the aim to increase utilization. Methods: In 2017, 24% of patients with AML admitted to Lancaster General Hospital for induction chemotherapy received an inpatient palliative consultation. Needs assessment performed on the hematology and palliative teams demonstrated a need for integration of palliative care into clinical pathways, automatic triggers for consultation, a need for increased education on AML, and creation of standard elements in inpatient consultations. Results: In the spring of 2018, we integrated palliative care into institutional AML clinical pathways such that all patients receive inpatient palliative consultation within 72 hours of admission. A consultation trigger was placed within the admission order set and is currently being incorporated into the chemotherapy treatment protocol. An educational program on AML was created and presented by the hematology team to the inpatient palliative team. This intervention included creation of minimum standards for inpatient palliative consultation including provider assessment within 72 hours of referral, two visits per week by a provider and a minimum of one visit by the interdisciplinary team during admission with a focus on symptom management, psychosocial assessments, and advanced care planning. Conclusions: We have demonstrated feasibility of creating standards for early palliative care intervention in AML patients with collaboration from the hematology and palliative teams. Next steps will include assessing whether these interventions increase uptake of palliative care utilization and specific patient outcomes.

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