Knowledge of and Preference for Advance Care Planning by Adults With Congenital Heart Disease

Tobler, Daniel; Greutmann, Matthias; Colman, Jack M.; Greutmann-Yantiri, Mehtap; Librach, S. Lawrence; Kovacs, Adrienne H.

doi:10.1016/j.amjcard.2012.02.027

Cited by 62 publications

(65 citation statements)

References 21 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Tobler et al also noted that the two most important factors for adults with ConHD when contemplating issues of death and dying were genuine, honest responses from physicians and an understanding of treatment options [ 26 ].…”

Section: Barriers and Facilitators To Effective Advance Care Planningmentioning

confidence: 99%

“…The mean score on the item labeled "death and dying" was 2.8 ± 1.3, with 57 % endorsing moderate to extreme concern (defi ned as a score of between 3 and 5 on the 5-point scale). When contemplating their own death and dying, the following items were identifi ed as being "very important" by more than half of the respondents in Tobler et al's survey of adults with ConHD: (1) honest answers from doctors, (2) understanding treatment choices, (3) visits from family and friends, (4) having said everything they want to say, (5) being free from pain, (6) being physically comfortable, (7) not being a burden to loved ones, (8) knowing how to say good-bye, (9) being at peace spiritually, and (10) fulfi lling personal goals/pleasures [ 26 ].…”

Section: End-of-life Care Of Adults With Congenital Heart Diseasementioning

confidence: 99%

“…The completion of advance care directives, however, does not appear to refl ect standard practice among adults with ConHD [ 26 , 27 ]. Tobler and colleagues evaluated the prevalence of the completion of advance directives by patients as well as patient preference regarding life expectancy information [ 26 ]. Two hundred outpatients with ConHD (mean age = 35 ± 15 years; 52 % male), of whom the majority (81 %) had moderate to severe disease complexity, completed surveys assessing their knowledge and preferences for advance care planning.…”

Section: Advance Care Planning For Adults With Congenital Heart Diseasementioning

confidence: 99%

See 2 more Smart Citations

End-of-Life Care and Treatment Preferences Among Adults with Congenital Heart Disease

Ferguson

Kovacs

2014

Clinical Psychology and Congenital Heart Disease

Self Cite

View full text Add to dashboard Cite

Section: Barriers and Facilitators To Effective Advance Care Planningmentioning

confidence: 99%

Section: End-of-life Care Of Adults With Congenital Heart Diseasementioning

confidence: 99%

Section: Advance Care Planning For Adults With Congenital Heart Diseasementioning

confidence: 99%

See 1 more Smart Citation

End-of-Life Care and Treatment Preferences Among Adults with Congenital Heart Disease

Ferguson

Kovacs

2014

Clinical Psychology and Congenital Heart Disease

Self Cite

View full text Add to dashboard Cite

“…Clinical guidelines recommend advance care planning for all patients with a chronic life-limiting illness (De Vleminck et al, 2014). Care planning improves alignment of patient care with patient wishes (Pew Research Center for the People & the Press, 2006;Silveira, Kim, & Langa, 2010;Tobler et al, 2012), increases patient and family satisfaction, and reduces surviving family stress and depression (Detering, Hancock, Reade, & Silvester, 2010). Optimally, care planning begins prior to the onset of disease, well before the end of life.…”

Section: Introductionmentioning

confidence: 99%

“…Unfortunately, this ideal is not often accomplished in practice. There is a growing body of literature that demonstrates patients with chronic illness want to participate in discussions and decisions about their care and to have these discussions (Johnston, Pfeifer, & McNutt, 1995;Steinhauser et al, 2001;California Healthcare Foundation, 2012;Pardon et al, 2012;Tobler et al, 2012;Morrison, 2013). …”

Section: Introductionmentioning

confidence: 99%

Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning

et al. 2016

View full text Add to dashboard Cite

Objectives: Although patients want to participate in discussions and decisions about their end-of-life care, studies show providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of this demonstration project was to provide education and coaching to individuals, health providers and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care in the final stages of life.Methods: Education and training engaged community members as well as health care providers to: 1) improve participant comfort and facility discussing end-of-life issues; 2) improve knowledge of health care choices, including palliative and hospice care; and 3) prepare all participants to explore and document personal values, life goals and priorities as well as goals of care.Results: Between January 2013 and June 2015, the team educated close to 5,000 participants.Participants' ratings of the quality and perceived usefulness of the events ranged from 4-5 (using 5-point scales; 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. Significance of Results:Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well in an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for ''sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who developed trusting relationship with patients in home-based services and fostering self-awareness and self-care among palliative care providers.Key words/phrases: Skill development for end-of-life conversations; providers' self-awareness and selfcare surrounding end-of-life care; community health workers' role in end-of-life conversations 3

show abstract

Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion

et al. 2021

View full text Add to dashboard Cite

Aims Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH-CHD patients with evidence of impaired health-related quality of life, especially those with advanced disease and palliative care needs. Methods and results We performed a systematic review of studies concerning palliative care for people with PAH-CHD, also reviewing the health-related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence-based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH-CHD. We synthesize this information into eight important areas, including the impact of PAH-CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end-of-life care issues in this complex patient group, and provide expert consensus on best practice in this field. Conclusions This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH-CHD.

show abstract

Knowledge of and Preference for Advance Care Planning by Adults With Congenital Heart Disease

Cited by 62 publications

References 21 publications

End-of-Life Care and Treatment Preferences Among Adults with Congenital Heart Disease

End-of-Life Care and Treatment Preferences Among Adults with Congenital Heart Disease

Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning

Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion

Contact Info

Product

Resources

About