Advance care planning and health literacy in older dialysis patients: qualitative interview study

2021 ◽  
pp. bmjspcare-2021-003273
Author(s):  
Julien O Riordan ◽  
P M Kane ◽  
Helen Noble ◽  
Andrew Smyth
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Core Values ◽  
Care Planning ◽  
Dialysis Patients ◽  
Healthcare Decision Making ◽  
Advance Care

ObjectivesLow health literacy among older adults is associated with limited engagement in end-of-life care planning, higher hospitalisation rates and increased mortality. Frequently, older dialysis patients derive no survival benefit from dialysis and their quality of life often deteriorates further on dialysis. Older dialysis patients’ values and wishes are frequently unknown during key healthcare decision making and many endure medically intensive end-of-life scenarios. The objectives of this study were to explore older dialysis patients’ understanding of haemodialysis, to explore their engagement in end-of-life care planning and to explore their satisfaction with life on haemodialysis.Methods15 older dialysis patients participated in qualitative semistructured interviews in two haemodialysis units in Ireland. Thematic saturation was reached. Thematic analysis, applied inductively, was used to distill the data.ResultsThemes identified included disempowerment among participants reflected limited health literacy, poor advance care planning compromised participant well-being, haemodialysis compromised participants’ core values.ConclusionHealth literacy levels among older dialysis patients are poor, patient empowerment is limited and their participation in shared decision making and advance care planning is suboptimal. Consequently, healthcare decision making, including haemodialysis, may jeopardise patients’ core values. Improving health literacy through enhanced patient education and improved communication skills training for clinicians is necessary to promote patient participation in shared decision making. Clinician training to facilitate discussion of patients’ values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with patients’ core values. This approach will optimise the circumstances for patient-centred care.

Advance care planning in older dialysis patients: health care literacy qualitative study

2021 ◽  
pp. bmjspcare-2021-003398
Author(s):  
Julien O Riordan ◽  
P M Kane ◽  
Helen Noble ◽  
Andrew Smyth
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Core Values ◽  
Care Planning ◽  
Dialysis Patients ◽  
Healthcare Decision Making ◽  
Advance Care

ObjectivesLow health literacy among older adults is associated with limited engagement in end-of-life care plans, more hospitalisations and excess mortality. Frequently, older patients derive no survival benefit from dialysis and quality of life often deteriorates with dialysis. Older dialysis patients’ values and wishes are often unknown during key healthcare decision-making and many endure medically intensive end-of-life interventions . The objectives of this study were to examine older dialysis patients’ understanding of haemodialysis, their engagement in end-of-life care planning and their satisfaction with life on haemodialysis.Methods15 older dialysis patients participated in qualitative semi-structured interviews in two haemodialysis units . Thematic saturation was reached. Thematic analysis, applied inductively, distilled the data.ResultsThemes identified included disempowerment which reflected limited health literacy, poor advance care planning compromised well-being and haemodialysis compromised their core values.ConclusionHealth literacy among older dialysis patients appeared poor, patient empowerment was limited and participation in shared decision-making and advance care planning suboptimal. Consequently, complex healthcare decision-making, including haemodialysis may jeopardise patients’ core values. These findings have significant implications for the validity of the informed consent process prior to dialysis initiation. Improved health literacy through enhanced patient education and better communication skills for clinicians are necessary to promote patient participation in shared decision-making. Clinician training to facilitate discussion of patients’ values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with individual core values. This will optimise patient-centred care.

scholarly journals Advance care planning in Asian culture

2020 ◽  
Vol 50 (9) ◽  
pp. 976-989 ◽  
Author(s):  
Shao-Yi Cheng ◽  
Cheng-Pei Lin ◽  
Helen Yue-lai Chan ◽  
Diah Martina ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Care Planning ◽  
Life Care ◽  
Asian Countries ◽  
Advance Care

Abstract Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.

Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients

2016 ◽  
Vol 31 (3) ◽  
pp. 267-274 ◽  
Author(s):  
Mi-Kyung Song ◽  
Maureen Metzger ◽  
Sandra E Ward
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Dialysis Patients ◽  
Advance Care ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision ◽  
Planning Intervention

Background: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients. Aim: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites. Design: Qualitative interviews and thematic analysis. Setting/participants: 24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust). Results: Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT’s impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient’s illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT’s impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites. Conclusion: Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates’ perspectives.

Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy

2019 ◽  
Vol 26 (7-8) ◽  
pp. 1946-1954 ◽  
Author(s):  
Kay de Vries ◽  
Elizabeth Banister ◽  
Karen Harrison Dening ◽  
Bertha Ochieng
Keyword(s):  
Health Literacy ◽  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Moral Agency ◽  
Care Planning ◽  
Life Care ◽  
Spirituality And Health ◽  
Advance Care

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions.

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

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