Early Experience with Digital Advance Care Planning and Directives, a Novel Consumer-Driven Program

Fine, Robert L.; Yang, Zhiyong; Spivey, Christy; Boardman, Bonnie; Courtney, Maureen Reni

doi:10.1080/08998280.2016.11929430

Cited by 19 publications

(20 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Hospice care on the other hand was mentioned less often, which might hint at a lack of knowledge about this option or prejudices. This contrasts significantly with recent results with digital advance care planning [47]. However, in our study spiritual care was requested more often, underlining the interdisciplinary holistic approach of palliative care at the end of life.…”

Section: Discussioncontrasting

confidence: 99%

Survey on German Palliative Care Specialists’ Experiences with Advance Directives

Zenz

2016

Pain Ther

View full text Add to dashboard Cite

IntroductionAdvance directives (AD) play a central role in end-of-life treatments, intensive care, and palliative care. However, little is known about the experiences of healthcare professionals with ADs. This study reports on palliative care professionals’ views on advance directives (AD).MethodsA questionnaire was handed out to attendants of a palliative care symposium.ResultsComplete answers were obtained from 126 physicians and 276 nurses. Almost all physicians and nurses had treated patients with an AD, and the majority more than 10 patients. The most frequent refusal by the patients was resuscitation (87.8%) followed by intensive care (79.1%), artificial ventilation, and nutrition. The most frequent wish was pain therapy (92.3%) followed by allowing the natural course of the illness (64.4%). The wish for hospice treatment (44.8%) or spiritual care (39.3%) was less frequent.DiscussionThe results hint at fears and deficits in the care of patients at the end of life. Often the quality of life and not the quantity of days remaining is in the center of a patient’s will and points to the growing importance of palliative care.ConclusionADs are well established among palliative care professionals and regarded as helpful for patients at the end of life.

show abstract

Section: Discussioncontrasting

confidence: 99%

Survey on German Palliative Care Specialists’ Experiences with Advance Directives

Zenz

2016

Pain Ther

View full text Add to dashboard Cite

show abstract

“…17 However, while online storage holds promise to overcome barriers to AD accessibility, it also raises some participants’ concerns about privacy These concerns may explain why the user population of 1 web platform was found to be predominantly young and healthy. 16 Storage functionality on ourdirectives.org is similar to that on other similar platforms, except some other platforms store documents not created through the website.…”

Section: Discussionmentioning

confidence: 99%

“…[13][14][15] Web-based platforms for AD completion are proliferating in part because they render content more flexible and customizable than paper documents, and they allow documents to be integrated into electronic health records and accessed at the point of care. 16 However, despite these potential advantages, research on web-based platforms is limited. One mixed-methods study revealed substantial interest among patients with lung diseases in using a hypothetical web tool for ACP.…”

Section: Introductionmentioning

confidence: 99%

Patients’ Perspectives on Approaches to Facilitate Completion of Advance Directives

Rolnick

Shea

Hart

et al. 2019

Am J Hosp Palliat Care

View full text Add to dashboard Cite

Background: Little is understood about the different ways patients complete advance directives (ADs), which is most commonly through lawyers and increasingly using websites. Objective: To understand patients' perspectives on different approaches to facilitating AD completion, the value of legal regulation of ADs, and the use of a web-based platform to create an AD. Design: Semi-structured interviews with patients. Setting/Participants: We purposively sampled 25 patients at least 70 years of age or with a chronic disease from 2 internal medicine clinics. Measurements: Interviews focused on experiences and perspectives creating ADs, including facilitation by lawyers, health-care professionals, and websites. Feedback on a website prototype was also obtained. Responses were analyzed with modified grounded theory until thematic saturation was achieved. Results: Although a majority of participants with ADs had used lawyers, participants were ambivalent about the benefits of lawyer facilitation. Most valued both the medical perspective of a health-care professional and a lawyer's attention to legal requirements for AD validity. Participants had positive impressions of the web platform, but some were concerned about privacy with online storage. Trust emerged as an overarching theme, and participants valued legal regulation of ADs to ensure document authenticity and delivery of preference-concordant care. Conclusion: Efforts to improve documentation of care planning need to address the disparate methods by which participants complete ADs. Creating options that combine the perceived benefits of a legal approach with greater health professional involvement could appeal to participants. Privacy concerns may limit web use by some patients.

show abstract

“…9,10 Existing research shows that some patients perceive an online mechanism to complete advance directives as more convenient than a traditional paper copy. 11…”

Section: Introductionmentioning

confidence: 99%

Patient Perspectives on Advance Care Planning via a Patient Portal

Jordan

Brungardt

Phimphasone-Brady

et al. 2019

Am J Hosp Palliat Care

View full text Add to dashboard Cite

Background: Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits. Objective: To describe patient perspectives on use of patient portal-based ACP tools. Design: Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR). Setting: Regional health-care system with a common EHR. Measurements: Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach. Results: From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care. Conclusions: Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.

show abstract

Early Experience with Digital Advance Care Planning and Directives, a Novel Consumer-Driven Program

Cited by 19 publications

References 19 publications

Survey on German Palliative Care Specialists’ Experiences with Advance Directives

Survey on German Palliative Care Specialists’ Experiences with Advance Directives

Patients’ Perspectives on Approaches to Facilitate Completion of Advance Directives

Patient Perspectives on Advance Care Planning via a Patient Portal

Contact Info

Product

Resources

About