Advance Care Planning and Advance Directives: A clear and concise expression of the patient’s wishes regarding personal care and medical treatment or therapeutic interventions


Today, Barry Ashpole presents abstracts that highlight new findings and trends in Advance Care Planning and Advance Directives with access free of charge to a selection of full-text journal articles. You may need to log in or subscribe for some of the papers. 

This post was first published on the EAPC blog in December 2019. If you missed it, here’s a chance to catch up with one of our favourite ‘evergreen’ posts.

Barry Ashpole

Advance directives for dementia: Honoring patient wishes when you don’t know what they are

Webb WA, Mitchell T, Nyatanga B et al. Nursing Standard, 2018; 32(27): 53-63.

Advance care directives (ACD) were originally developed to provide guidance to family and healthcare practitioners about end-of-life (EoL) decisions for patients faced with a terminal prognosis. Because of the extended time frame of dementia, however, the standard ACD applied to managing negative outcomes of disease is often left unconsidered as long as the patient still has cognition. In a commentary published in JAMA in December 2017, Gaster & Larson point out that ACD are not “helpful” within the context of loss of cognitive function, and typically address specific conditions that have more definable prognoses involving pain and loss of consciousness. Because quality of life in dementia can be maintained with assistance, family and caregivers have difficulty determining when and how EoL decisions should be made.

A website supporting sensitive religious and cultural advance care planning (ACPTalk): Formative and summative evaluation

Pereira-Salgado A, Mader P, O’Callaghan C et alJMIR Research Protocols, 2018;7 (4):e78.

This study, based on the analysis of interviews with general practitioners, and primary health and palliative care nurses, demonstrates that all facets of the context, input, process, and product framework can be effectively applied for evaluation of eHealth technologies, specifically advance planning (ACP) websites, with assessment of ACPTalk. Results show that most users viewed the website positively in terms of design, content, and functionality and also found it useful to increase knowledge and preparation for ACP with people of different religious and cultural backgrounds. Further ACP website development should consider the recommendations derived from this study, including multilingual translations and the development of comparable culturally sensitive websites tailored for patients and families, which may assist in strengthening understanding and cognizance of ACP among these populations.

Dying in care homes, when advance care planning requires wraparound care

Good C. Palliative Medicine, 2018; 32 (2): 312-313.

Entry to a care home often occurs when other services are no longer appropriate. The older person is unlikely to benefit from curative treatments and their needs have exceeded what can be provided within their home. It signals someone is in the last year(s) of life. Research articulates well the palliative care (PC) needs of residents and tested and developed education and training interventions that are context-specific and dementia-sensitive. Less well articulated is how the different configurations of services that work with and around care homes improve, sustain or hinder end-of-life care (EoLC) provision to care home residents. What kind of infrastructure and “wraparound” support is needed to ensure continuity, consistency and management of the inevitable uncertainties that arise when providing PC to this population?

A review of paper-based advance care planning aids

Bridges JFP, Lynch T, Schuster ALR et alBMC Palliative Care, published online 27 March 2018.

This study identifies a need for paper-based aids that support and empower patients to initiate meaningful advance care planning (ACP). The findings suggest that to meet patients’ needs and create patient-centered ACP aids, active patient involvement is a necessary, and often missing, component and ACP aids need to explore framing beyond specific end-of-life care situations. By identifying and classifying different categories of paper-based ACP aids, the study provides a useful framework that clinicians might use to help inform the selection of an ACP aid that is most appropriate to their patients and to alternative decision makers. Additionally, the authors’ findings have helped guide the development of a new ACP aid, and have provided a framework by which future ACP aids might be measured.

Advance directives as a tool to respect patients’ values and preferences: Discussion on the case of Alzheimer’s disease

Porteri C.BMC Medical Ethics, published online 20 February 2018.

The prevalence of advance directives (AD) among old people, including patients with dementia, is low. Physicians rely on their medical judgement and family view more than on patients’ expressed preferences. Few and not conclusive data exist on the potential positive impact of AD on the treatment of patients with severe cognitive impairment or dementia, for instance regarding avoiding tube feeding or transfer from nursing home to hospital and receiving palliative care. To promote and honor AD in dementia is not in contrast with the acknowledgement of the full dignity of the person with dementia, nor with the call to the personal and societal duty to care for the others. Not to honor a demented individual’s directive would be a form of discrimination towards those patients.

Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: Which is more likely to reflect the older adult’s preferences?

Bravo G, Sene M, Arcand M. Journal of Medical Ethics, published online 9 March 2018.

Eight percent of the elders (together with their proxy) who participated in this Canadian study – 157 community-dwelling, decisionally competent adults aged 70 years and over – had completed an advance directive (AD). Secondary analysis of the interviews suggest an AD might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. Choices they made were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across different scenarios. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.

Provider tools for advance care planning and goals of care discussion: A systematic review

Myers J, Cosby R, Gzik D et al. American Journal of Hospice & Palliative Medicine, publish online 12 March 2018.

Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning (ACP) or goals of care (GoC) discussions. Effective ACP conversations, at both the population and the individual level, require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. The specific questions that helped to shape this systematic review were intended to reflect the elements clinicians find particularly challenging, that is, introducing, facilitating, and documenting both ACP and GoC discussions. There is a need for research focused on GoC discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate GoC from ACP.

Italy’s new advance directive law: When in Rome …

Sulmasy DP. JAMA Internal Medicine, published online 12 March 2018.

Although all human beings share the same biology, the political context of medical practice, like all politics, is notoriously local. So, while some might be surprised to learn that Italy only adopted its first advance directive legislation in the closing days of 2017, such surprise would reflect a kind of naive parochialism. Rome is not Washington DC. The bill, which passed the Italian Senate in December 2017 after three decades of debate, assumed the force of law on 6 January 2018. The law establishes a right to refuse tests and treatments, a right to palliative care, and provides for living wills and the naming of medical proxies. The protracted legislative course reflects a complex amalgam of culture, religion, language, politics, ethics and medicine.

The voice is as mighty as the pen: Integrating conversations into advance care planning

Bailoor K, Kamil LH, Goldman E et al. Journal of Bioethical Inquiry, published online 17 March 2018.

While written advance directives (AD) contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an advance care planning (ACP) tool and to increase integration of such discourse into ACP policy as adjuncts and complements to written AD. The authors review current legislation and dissect how documentation of spoken interactions might be integrated and considered. They discuss specific institutional policy changes required to facilitate implementation and also explore pertinent ethical issues.

Advance care planning discussions with adolescent and young adult cancer patients admitted to a community palliative care service: A retrospective case-note audit

Fletcher S, Hughes R, Pickstock Set al. Journal of Adolescent & Young Adult Oncology, 2018,7(1):112-119.

Adolescents and young adults (AYA) with cancer require specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions warrant age-appropriate adaptation, yet, there is little research available to inform best practice for this group. This study indicates that end-of-life care preferences may differ from those of the adult population and need to be captured and understood. For example, the desire to pursue all available oncological therapies was documented for 14 (51.9%) AYA patients studied compared with 9 (24.3%) of the adult group studied. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.

More about the author…

Barry Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of health care, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

Read more posts on the EAPC blog about Advance Care Planning and Advance Directives.

ABSTRACT WATCH will be back at the end of June/early July 2019 when Barry Ashpole will present more abstracts on a selected theme in palliative and end-of-life care. Sign up to the EAPC blog to receive an email alert each time a post is published.


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