Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions

2021 ◽  
pp. 1-9
Author(s):  
Lori Wiener ◽  
Sima Bedoya ◽  
Haven Battles ◽  
Leonard Sender ◽  
Keri Zabokrtsky ◽  
...  
Keyword(s):  
Social Support ◽  
Young Adults ◽  
Family Member ◽  
Advance Care Planning ◽  
Family Members ◽  
Generalized Anxiety ◽  
Care Planning ◽  
Care Providers ◽  
Formal Tool ◽  
Advance Care

Abstract Objectives To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). Methods A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. Results At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. Significance of results Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

Association between religious beliefs and discussions regarding advance care planning: A nationwide survey

2021 ◽  
pp. 026921632110295
Author(s):  
Jun Miyashita ◽  
Sayaka Shimizu ◽  
Shunichi Fukuhara ◽  
Yosuke Yamamoto
Keyword(s):  
Health Care Providers ◽  
Advance Care Planning ◽  
Religious Beliefs ◽  
Nationwide Survey ◽  
Care Planning ◽  
Care Providers ◽  
Logistic Regression Models ◽  
Japanese Buddhism ◽  
Advance Care ◽  
Quota Sampling

Background: The relationship between advance care planning and religious beliefs, which are important for palliative care, is controversial in Western countries and has not been verified in Asian countries. Aim: To investigate the association between advance care planning discussions and religious beliefs in Japan. Design: A nationwide survey conducted in 2016 using a quota sampling method to obtain a representative sample of Japan’s general population. Setting/participants: We analyzed responses from 3167 adults aged 20–84 years (mean age ± standard deviation, 50.9 ± 16.8 years). The outcome was measured by asking whether the respondents had ever discussed advance care planning, and the main exposure by whether they had any religious beliefs or affiliations, and if so, their degree of devoutness. We analyzed religious beliefs, affiliations, and devoutness in relation to the occurrence of discussions using multivariable logistic regression models adjusted for possible sociodemographic covariates. Results: Compared with respondents without, those with religious beliefs had significantly higher odds of having had discussions (adjusted odds ratio: 1.45, 95% confidence interval: 1.22–1.73). The devoutness of religious belief was proportional to the propensity of the occurrence of discussions ( p for trend < 0.001). In addition, Buddhists and Christians had higher odds of having had discussions than did nonbelievers. Conclusion: The results suggest that holding religious beliefs, especially in Japanese Buddhism and Christianity, facilitates advance care planning discussions among Japanese adults, and thus, may help health-care providers identify those prioritized for facilitating engagement in advance care planning, especially in palliative and spiritual care settings.

A letter to your care providers: implementation and analysis of a letter-based advance care planning initiative for gynecologic oncology patients

2021 ◽  
Vol 162 ◽  
pp. S76
Author(s):  
Catherine Zivanov ◽  
Anne Coogan ◽  
Robin Lane ◽  
Marc Robinson ◽  
Molly Williams ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Gynecologic Oncology ◽  
Care Planning ◽  
Care Providers ◽  
Oncology Patients ◽  
Advance Care

Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients

2018 ◽  
Vol 35 (12) ◽  
pp. 1565-1571
Author(s):  
Marjorie Bowman ◽  
Sarah St. Cyr ◽  
Adrienne Stolf i
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Religious Affiliation ◽  
Living Will ◽  
Care Planning ◽  
Care Providers ◽  
Power Of Attorney ◽  
Religious Preference ◽  
Advance Care

Objective: To understand how health-care providers’ (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP’s involvement. Methods: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs’ ACP participation. Results: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). “No religion” was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP’s religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. Conclusions: Personal religious preference is associated with HCP’s own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.

scholarly journals ADVANCE CARE PLANNING COMMUNICATION: AN INTERACTIVE WORKSHOP WITH ROLE-PLAY FOR STUDENTS AND PRIMARY CLINICIANS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S846-S846
Author(s):  
Ben A Blomberg ◽  
Catherine Quintana ◽  
Jingwen Hua ◽  
Leslie Hargis-Fuller ◽  
Jeff Laux ◽  
...  
Keyword(s):  
Primary Care ◽  
Medical Students ◽  
Advance Care Planning ◽  
Role Play ◽  
Primary Care Providers ◽  
Care Planning ◽  
Care Providers ◽  
Clinician Training ◽  
Primary Care Clinics ◽  
Advance Care

Abstract There is a need for increased clinician training on advance care planning (ACP). Common barriers to ACP include perceived lack of confidence, skills, and knowledge necessary to engage in these discussions. Furthermore, many clinicians feel inadequately trained in prognostication. There is evidence that multimodality curricula are effective in teaching ACP, and may be simultaneously targeted to trainees and practicing clinicians with success. We developed a 3-hour workshop incorporating lecture, patient-oriented decision aids, prognostication tools, small group discussion, and case-based role-play to communicate a values-based approach to ACP. Cases included discussion of care goals a patient with severe COPD and one with mild cognitive impairment. The workshop was delivered to 4th year medical students, then adapted in two primary care clinics. In the clinics, we added an interprofessional case applying ACP to management of dental pain in advanced dementia. We evaluated the workshops using pre-post surveys. 34 medical students and 14 primary care providers participated. Self-reported knowledge and comfort with ACP significantly improved; attitudes toward ACP were strongly positive both before and after. The workshop was well received. On a seven-point Likert scale, (1=Unacceptable, 7=Outstanding), the median overall rating was 6 (“Excellent”). In conclusion, we developed an ACP workshop applicable to both students and primary clinicians. We saw improvements in self-reported knowledge and comfort with ACP, though long-term effects were not studied. Participants found the role-play especially valuable. Most modifications for primary care clinics focused on duration rather than content. Future directions include expanding the interprofessional workshop content.

scholarly journals Elephant in the room - Family members´ perspectives on advance care planning

2020 ◽  
Vol 38 (4) ◽  
pp. 421-429
Author(s):  
Lisa Kastbom ◽  
Marit Karlsson ◽  
Magnus Falk ◽  
Anna Milberg
Keyword(s):  
Advance Care Planning ◽  
Family Members ◽  
Care Planning ◽  
Advance Care

Making Advance Directives Visual: Introducing Young Adults to Advance Care Planning With Video-Recorded Advance Directives

2019 ◽  
Vol 25 (4) ◽  
pp. e44-e51
Author(s):  
Cameron Kiersch ◽  
Teddie Potter
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Planning Process ◽  
Care Planning ◽  
Advance Care ◽  
Definition Of

The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.

scholarly journals Palliative Care and Advance Care Planning in Pulmonary Hypertension

2018 ◽  
Vol 17 (1) ◽  
pp. 15-19 ◽  
Author(s):  
Charles L. Rhee ◽  
Michael Cuttica
Keyword(s):  
Palliative Care ◽  
Pulmonary Hypertension ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Progressive Disease ◽  
Care Planning ◽  
Care Providers ◽  
Advance Care

Pulmonary hypertension (PH) is a progressive disease with high associated morbidity and mortality despite the development of novel therapies. Palliative care is a multidisciplinary field focused on optimization of quality of life and overall supportive care for patients and their families in the setting of life-limiting illness. Although the benefits of palliative care in oncology are well described, there are few studies regarding the timing and involvement of palliative care in PH patients. In this paper, we describe the importance of longitudinal advance care planning, including suggestions for addressing difficult topics such as end-of-life care, and the role of palliative care providers in helping guide these discussions throughout the course of the illness.

Sign in / Sign up

Export Citation Format

Share Document