Patient and family members' perceptions of palliative care in heart failure

Metzger, Maureen; Norton, Sally A.; Quinn, Jill R.; Gramling, Robert

doi:10.1016/j.hrtlng.2012.11.002

Cited by 52 publications

(53 citation statements)

References 45 publications

(35 reference statements)

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“…In contrast, the request for palliative care by the patient, relatives or the cardiology team was indicated rarely (5% each). This is in correspondence to previous studies demonstrating that cardiologists and their patients restrict palliative care to end-of-life care and have no specific ideas about integrating palliative care in earlier phases of the disease trajectories [15,16,20].…”

Section: Discussionsupporting

confidence: 83%

“…Using the cut-off value of >5 of the original version of the "Five Item Palliative Care Screening Tool" for cancer patients by Glare et al [14,20] as indicator for palliative care need, 113 patients (76%) would have needed additional palliative care (Table 5). The internal consistency of the "Palliative Care Screening Tool for heart failure patients" was Cronbach's α=0.580, indicating multidimensionality of the screening tool.…”

Section: Characteristicsmentioning

confidence: 99%

“…A limited understanding of the other specialist discipline hampers a professional collaborative approach to the specific patients` needs [15][16][17]. In the context of cardiologic diseases, palliative care is usually considered to be restricted to end-of-life care and cardiologists, but also the patients themselves and their family caregivers usually have no or only little knowledge about the potential benefits of palliative care in chronic heart failure patients [15,16,20]. The most crucial reason seems to be the absence of criteria or trigger points defining the optimal time frame to initiate palliative care [2,16,17].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Self-assessment and Screening for Palliative Care Need in Patients with Chronic Heart Failure

Ehlert¹,

Kodolitsch²,

Ullrich³

et al. 2017

J Palliat Care Med

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Objective: Patients with chronic heart failure (CHF) rarely receive palliative care today. Methods:In a cross-sectional pilot study we evaluated feasibility of self-assessment and physician-directed screening for palliative care need in CHF patients. Patients answered German versions of the "Minimal Documentation system for patients in palliative care" (MIDOS), "Distress-Thermometer" (DT), and the "Patient Health Questionnaire" (PHQ4). A modified version of the "Five-Item Palliative Care Screening Tool" was used to screen for palliative care need by the treating cardiologists.Results: 218 patients were asked to participate and 148 (67%) completed all questionnaires. Median symptom burden (MIDOS) was 7 out of 30 points (SD 4.868), overall wellbeing was two of 5 (SD 0.902), and median distress score was 6 of 10 (SD 2.318). Most frequent moderate or severe symptoms were dyspnea (52%), weakness (51%), and tiredness (49%). Significant distress (DT score>5) was indicated by 106 patients (72%). Exhaustion (79%), sleeping problems (75%), and problems with breathing (69%) were most frequent problems. Only 11% and 14% of patients presented with significant anxiety and depression, respectively (PHQ4-score>3).Palliative care need was scored with mean 6.8 out of 12 points (SD 2.223). Using a cut-off value of >5, 113 patients (76%) would have needed palliative care. Objective parameters for palliative care need (symptom burden 43%, distress 68%, decision-making 67%) were indicated, but request for palliative care by the patients, their relatives (5%) or the cardiology team (5%) was rare. Symptom burden and palliative care screening showed significant, but not clinically relevant interaction. Conclusion:This pilot study, feasibility of palliative care self-assessment and the modified screening instrument could be demonstrated in CHF patients. For comprehensive screening, both perspectives have to be included. First results indicate significant symptom burden, psychological distress and a high need for additional palliative care in CHF patients.

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Section: Discussionsupporting

confidence: 83%

Section: Characteristicsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Self-assessment and Screening for Palliative Care Need in Patients with Chronic Heart Failure

Ehlert¹,

Kodolitsch²,

Ullrich³

et al. 2017

J Palliat Care Med

View full text Add to dashboard Cite

show abstract

“…103 One critical application of palliative care expertise is enhancing patient-clinician communication, particularly related to goals of care discussions. In an assessment of home-based palliative care, all individuals had at least 1 goals-of-care discussion compared with 41% of individuals in a control group.…”

Section: Patient-clinician Communicationmentioning

confidence: 99%

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Braun¹,

Grady²,

Kutner³

et al. 2016

Circulation

193

143

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AbstrAct:The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidencebased care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient-and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payerprovider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

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“…Tool development began with a literature review of studies and tools related to perceptions of and referral barriers to oncology palliative care (Bradley et al, 2002;Cherny et al, 2003;Cherny & Palliative Care Working Group of the European Society for Medical Oncology, 2011;Fox et al, 2007;Johnson et al, 2008;Metzger et al, 2013;Ogle et al, 2002;Sheetz & Bowman, 2008;Ward et al, 2009;Wotton et al, 2005 Palliative care implementation toolkit ranged from not relevant (1) to very relevant and succinct (4) (Lynn, 1986). Items were revised based on reviewer feedback, focusing on items that received an average content validity score of 3 or greater.…”

Section: Development and Testingmentioning

confidence: 99%

Developing a “toolkit” to measure implementation of concurrent palliative care in rural community cancer centers

et al. 2017

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Objective: Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a "toolkit" to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers.Method: Guided by the RE-AIM (Reach, Effectiveness -Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits.Results: We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey.Significance of results: We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive "toolkit" to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

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Patient and family members' perceptions of palliative care in heart failure

Cited by 52 publications

References 45 publications

Self-assessment and Screening for Palliative Care Need in Patients with Chronic Heart Failure

Self-assessment and Screening for Palliative Care Need in Patients with Chronic Heart Failure

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Developing a “toolkit” to measure implementation of concurrent palliative care in rural community cancer centers

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