Patients’ Perceptions of Illness Severity in Advanced Heart Failure

Hupcey, Judith E.; Kitko, Lisa; Alonso, Windy

doi:10.1097/njh.0000000000000229

Cited by 21 publications

(18 citation statements)

References 28 publications

(35 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Previous studies have shown that patients may overestimate survival by upwards of 40% when compared to models like the SHFM 18 and Stage D HF patients are often unaware of their own illness severity and the terminal trajectory of HF despite severe symptoms. 3 Selman and colleagues 19 reported that caregivers of advanced heart failure patients commonly hope for symptom improvement and periods of stability despite awareness of a declining status which was also noted in the caregiver’s comments in this study. As one caregiver mentioned I looked at it as ‘he’s going to get better and he’s going to be able to go home.’ I’m sure that’s everybody’s wish when you have a loved one as sick he was.…”

Section: Discussionsupporting

confidence: 59%

“…2,3 It is projected that by 2030 the United States will have upwards of 8 million HF patients. 4 These 8 million patients will, at some point in their trajectory, require the help of an informal caregiver to assist them with managing their illness, and thus, creates a large number of HF caregivers that will need care and support themselves as they navigate this difficult course.…”

Section: Introductionmentioning

confidence: 99%

“…The erratic disease course lends itself to confusion among patients and caregivers in the throes of the trajectory. Hupcey and colleagues 3 recently reported that Stage D HF patients are unaware of the severity of their illness and lack understanding of HF as a terminal disease despite the presence of severe symptoms. These same trajectory fluctuations make caring for a patient with HF a roller coaster ride, often leaving family caregivers unsure of what may lie ahead.…”

Section: Introductionmentioning

confidence: 99%

“…11 Clinicians lack confidence in initiating the conversations and are hesitant to suggest palliative care due to misconceptions of the role of palliative services in HF. 5,12 Often clinicians place the onus for the discussion of end-of-life goals and needs for supportive services on patients and caregivers with the assumption that the conversation will occur when the family is “ready.” 13 This assumption is a double-edged sword in HF since, as mentioned above, patients and caregivers may not fully comprehend the severity of HF or that the final outcome is death; 3 both of which impede their ability to articulate “readiness” to accept supportive services or discuss end-of-life plans. Ultimately, this chicken-or-egg scenario leads to most palliative care or hospice referrals in HF occurring when death is imminent despite the known benefits of early referral.…”

Section: Introductionmentioning

confidence: 99%

“…3 This gap in caregiver knowledge may interfere with the acceptance of supportive and end-of-life services that could be valuable to improve physical and psychosocial outcomes for patients in Stage D HF. In fact, caregiver denial of terminality was shown to lead to increased inpatient treatment during in-home hospice resulting in patients dying in the hospital rather than home as they had planned.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

2017

Self Cite

View full text Add to dashboard Cite

Section: Discussionsupporting

confidence: 59%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

2017

Self Cite

View full text Add to dashboard Cite

A longitudinal comparison of health‐related quality of life in rural and urban recipients of left ventricular assist devices

Alonso

Faulkner

Pozehl

et al. 2020

Research in Nursing & Health

View full text Add to dashboard Cite

Left ventricular assist devices (LVAD) are a common treatment for advanced heart failure (HF) to improve ventricular function, symptoms, and health‐related quality of life (HRQOL). Many LVAD recipients travel long distances from rural areas for LVAD implantation and follow‐up care. Individuals with HF in rural settings who have not undergone LVAD implantation have reported poor HRQOL. However, to date, no studies have compared HF‐specific or generic HRQOL in rural and urban LVAD recipients. The purpose of this study was to compare generic and HF‐specific HRQOL longitudinally from preimplantation to 1‐, 3‐, and 6‐ months postimplant in a cohort of rural and urban LVAD recipients (n = 95; rural n = 32 and urban n = 63). We measured generic HRQOL using the European Quality of Life Visual Analog Scale and HF‐specific HRQOL with the quality of life domain of the Kansas City Cardiomyopathy Questionnaire (KCCQ). Latent growth curve modeling identified two phases of change in generic and HF‐specific HRQOL: the initial response to LVAD between preimplantation and 1‐month postimplant and the subsequent change between 1‐ and 6‐months postimplant. Comparable improvements in generic HRQOL were noted in rural and urban LVAD recipients during both phases of change. Urban LVAD recipients had greater initial improvements in HF‐specific HRQOL (KCCQ) compared with rural recipients (13.0 ± 5.6, p = .02), but subsequent improvements were similar among rural and urban recipients. Ongoing assessment of generic and HF‐specific HRQOL is necessary during LVAD therapy.

show abstract

Palliative Care in the Management of Patients with Advanced Heart Failure

Lowey

2017

Advances in Experimental Medicine and Biology

View full text Add to dashboard Cite

Globally, there are 18-million individuals living with heart failure, a disease that is responsible for 12-15 million office visits and 6.5 million inpatient hospitalizations each year. As HF becomes advanced or end-stage, patients often live in a cycle of frequent transitions between care settings, and with unmet needs, including distress from inadequately managed symptoms. Prognostication in patients with heart failure can be challenging due to the unpredictable exacerbating-remitting illness trajectory that is associated with this progressive disease. Recurrent hospitalizations, worsening functional status and refractory symptoms, despite optimal therapies, are among the most salient predictors indicating that patients with advanced heart failure are nearing the end of life. Palliative care is a specialized form of medical care that has been shown to help improve severity of symptoms, facilitate discussions regarding medical decision making/advance care planning, and provide support for patients and their families. Palliative care can be used alongside curative treatments and has been shown to improve patient satisfaction and quality of life. Anorexia-cachexia syndrome, dyspnea, fatigue, pain and depression are among the most common symptoms experienced by patients suffering from advanced heart failure. Palliative care can help alleviate these symptoms and also facilitate conversations about decision making surrounding resuscitation status and use or deactivation of medical devices, such as an implantable-cardioverter-defibrillator (ICD). Clinical practice guidelines from the American College of Cardiology and American Heart Association report that aggressive life-sustaining treatments and therapies should not be utilized in patients with advanced heart failure who have refractory symptoms that are not responding to medical therapy. The focus of care should switch to controlling symptoms, reducing hospital admissions and improving health-related quality of life, which can be supported by the incorporation of palliative care into the treatment plan.

show abstract

Patients’ Perceptions of Illness Severity in Advanced Heart Failure

Cited by 21 publications

References 28 publications

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

A longitudinal comparison of health‐related quality of life in rural and urban recipients of left ventricular assist devices

Palliative Care in the Management of Patients with Advanced Heart Failure

Contact Info

Product

Resources

About