Context Matters: Exploring Intervention Dose and Dose-Related Outcomes in a Palliative Care Intervention for Patients with Heart Failure (SCI910)

Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.

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1443 Collaborative Working: Focusing on the Palliative Care Needs of Patients with Heart Failure

European Journal of Cardiovascular Nursing ◽

10.1177/147451510500400134 ◽

2005 ◽

Vol 4 (1) ◽

pp. 64-64

Author(s):

Sarah Young ◽

Jan McFadyen ◽

Ann Gibbins ◽

Carolyn Kenny ◽

Sheila Boyer ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Care Needs ◽

Patients With Heart Failure ◽

Collaborative Working ◽

Palliative Care Needs

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Qualitative study to explore what patients with heart failure find significant during integrated palliative care sessions in a Danish clinic

BMJ Open ◽

10.1136/bmjopen-2020-043955 ◽

2020 ◽

Vol 10 (12) ◽

pp. e043955

Author(s):

Stine Gundtoft Roikjær ◽

Charlotte Paaske Simonÿ ◽

Helle Ussing Timm

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Meaning Making ◽

Interview Study ◽

Exclusion Criterion ◽

Semistructured Interview ◽

Patients With Heart Failure ◽

New Diagnosis ◽

Medical Perspective

ObjectiveIn the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S’ approach.DesignWe conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research.Participants and settingThe inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S’ approach sessions and participated in this interview study.ResultsOverall, the analysis showed that the integrated S’ approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life.ConclusionThe method using the S’ approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S’ approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.

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