Comparing Unmet Needs between Community-Based Palliative Care Patients with Heart Failure and Patients with Cancer

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

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.01.073 ◽

2021 ◽

Vol 61 (3) ◽

pp. 674-675

Author(s):

Rachel Wells ◽

James N. Dionne-Odom ◽

Harleah Buck ◽

Andres Azuero ◽

Sally Engler ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Care Intervention ◽

Patients With Heart Failure

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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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Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study

Palliative Medicine ◽

10.1177/0269216317738161 ◽

2017 ◽

Vol 32 (1) ◽

pp. 143-155 ◽

Cited By ~ 16

Author(s):

Pauline M Kane ◽

Clare I Ellis-Smith ◽

Barbara A Daveson ◽

Karen Ryan ◽

Niall G Mahon ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Chronic Heart Failure ◽

Unmet Needs ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Specific Patient ◽

Patient Centred Care ◽

Palliative Care Outcome Scale ◽

Patient Reported

Background: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients’ needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. Aim: To explore whether and how a palliative care–specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients’ experience of patient-centred care in nurse-led chronic heart failure disease management clinics. Design: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. Setting/participants: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II–IV. Nurses who led these clinics were eligible for inclusion. Results: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients’ symptoms and concerns, facilitating patient–nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. Conclusion: This Integrated Palliative care Outcome Scale–based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

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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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