Status and Issues of Pediatric Palliative Care for Patients with Chronic Heart Failure in Our Hospital

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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Understanding and Defining Palliative Care in Chronic Heart Failure: A Survey of Cardiovascular Health Professionals

Heart Lung and Circulation ◽

10.1016/j.hlc.2021.06.116 ◽

2021 ◽

Vol 30 ◽

pp. S142

Author(s):

G. Singh ◽

C. Ferguson ◽

P. Davidson ◽

P. Newton

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Chronic Heart Failure ◽

Health Professionals ◽

Cardiovascular Health

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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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Is the content of guidelines/pathways a barrier for the integration of palliative Care in Chronic Heart Failure (CHF) and chronic pulmonary obstructive disease (COPD)? A comparison with the case of cancer in Europe

BMC Palliative Care ◽

10.1186/s12904-017-0243-7 ◽

2017 ◽

Vol 16 (1) ◽

Cited By ~ 3

Author(s):

Naouma Siouta ◽

Karen Van Beek ◽

Sheila Payne ◽

Lukas Radbruch ◽

Nancy Preston ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Chronic Heart Failure ◽

Chronic Pulmonary Obstructive Disease ◽

Obstructive Disease

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Current Trends and Possibilities of Providing Medical Palliative Care in Chronic Heart Failure

Kardiologiia ◽

10.18087/cardio.2019.1.10219 ◽

2019 ◽

Vol 59 (1) ◽

pp. 84-92

Author(s):

V. N. Larina ◽

I. I. Chukaeva ◽

V. G. Larin

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Chronic Heart Failure ◽

Terminal Phase ◽

Treatment Resistant ◽

Current Trends ◽

Appropriate Care ◽

High Prevalence ◽

Oncological Diseases ◽

Specialized Palliative Care

Chronic heart failure (CHF) is an important healthcare problem because of high prevalence, morbidity and mortality rates. Treatment resistant symptoms, need for communication and support, unite patients with CHF and oncological diseases but despite that CHF patients rarely receive specialized palliative care (SPC). This review is devoted to the need and possible ways of providing SPC to patients with CHF and their families. We discuss here variants of CHF course in terminal phase, the term end of life appropriate care, various specialists’ concepts of SPC delivering to CHF patients in accordance with their preferences.

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Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

Palliative Medicine ◽

10.1177/0269216320963941 ◽

2020 ◽

pp. 026921632096394 ◽

Cited By ~ 1

Author(s):

Stephanie MC Ament ◽

Inge ME Couwenberg ◽

Josiane JJ Boyne ◽

Jos Kleijnen ◽

Henri EJH Stoffers ◽

...

Keyword(s):

Heart Failure ◽

Systematic Review ◽

Palliative Care ◽

Chronic Heart Failure ◽

Health Care Professionals ◽

Healthcare Professionals ◽

Care Process ◽

Care Needs ◽

Process Guidance ◽

Palliative Care Needs

Background: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. Aim: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. Design: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools’ development, evaluation, feasibility, and implementation was sought and described. Data sources: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. Results: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. Conclusion: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

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