Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272) (original) (raw)
Related papers
Journal of Palliative Medicine, 2008
Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. Objective: To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document. Methods: Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes ® , an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant's age; (2) helpful for other people the participant's age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. Results: Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes ® would be "helpful" or "very helpful" to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes ® "stressful" or "very stressful." Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. Conclusions: An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.
Asian Bioethics Review, 2018
Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected Bchoices^about specific interventions which either revolve around broad themes (e.g., Bprolong life / do not prolong life^) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility-creating a burden for which most patients are unprepared-and hence reducing healthcare providers' responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes restructuring our AD form to more accurately represent patient's values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue-or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.
Shifting Focus in Pediatric Advance Care Planning: From Advance Directives to Family Engagement
Journal of Pain and Symptom Management, 2016
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP discussion may be an advance directive (AD), a written order delineating explicit wishes regarding medical interventions. Pediatric palliative care (PPC) is a young field and developed many of its approaches as reflections from adult palliative care. ACP has not been well evaluated in children. 1 Often ADs are thought to be synonymous with a ''do not attempt resuscitation'' (DNAR) order, which in turn has been treated as an indicator for a nonintervention-oriented stance and as a proxy for ACP discussions between families and clinicians. 2 Another barrier identified in the literature is physician reluctance to undertake ACP discussions. Clinicians report feeling ill prepared and inadequately trained to carry out such conversations. 3 Studies involving parents of children with lifethreatening conditions showed that parents are interested in ACP, provided there is emotional support available. 3,4 The literature indicates that ACP discussions likely need to occur more than once over time.
Palliative and Supportive Care, 2021
ObjectivesTo 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).MethodsA 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.ResultsAt baseline, 50.3...
Perceptions, Attitudes, and Knowledge toward Advance Directives: A Scoping Review
Healthcare, 2013
Abstract: (1) Background: Advance directives are an expression of a person’s autonomy regarding end-of-life care. Several studies have shown that the level of completion in countries where advance directives are legalized is low. To better understand this phenomenon, it is important to know the perceptions, attitudes, and knowledge that the population has about this instrument. The aim of this article was to explore a population’s perceptions and/or attitudes and/or knowledge toward advance directives. (2) Methods: A search was conducted in March 2023 in the ISI Web of Knowledge, Scopus, and PubMed databases using the following keywords: “advance care directives”, “advance care planning”, “perceptions”, “attitudes”, and “knowledge”. Two hundred and twentyfour (224) articles were identified, and thirteen (13) were included for analysis. (3) Results: The selected articles point to a low level of knowledge toward advance directives: they recognise a strong positive attitude of the population toward the implementation of advance directives but a low level of achievement. (4) Conclusions: Studies on perceptions/attitudes/knowledge toward advance directives are important to understand the real needs of the population regarding this issue and to implement more adequate and effective promotion and dissemination measures.
Too Soon to Give Up: Re-examining the Value of Advance Directives
The American Journal of Bioethics, 2010
In the face of mounting criticism against advance directives, we describe how a novel, computerbased decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future, translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by 1) educating users about advance care planning; 2) helping individuals identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; 3) explaining common end-of-life medical conditions and lifesustaining treatment; 4) helping users articulate a coherent set of wishes with regard to advance care planning-in the form of an advance directive readily interpretable by physicians; and 5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and healthcare providers in discussions about advance care planning. Keywords advance care planning; bioethics; decision aid; decision making; end-of-life; living wills When Nina Klinger, 78, went to see her doctor, she learned that she was in the early stages of Alzheimer's Disease-the same disease that had killed her husband the previous Spring. Her husband's illness had been very difficult, not only due to his progressive dementia, but also because of the multiple medical complications he endured, including pneumonia, a flare-up of his diabetes, and surgery to place a feeding tube when he would no longer eat. So, too, there had been some challenging interactions with doctors involved in his medical care. To their credit, the doctors tried to fix every problem that arose. But because they didn't know what her husband would have wanted, they also didn't know when enough was enough. And because she had never really talked with her husband about his specific wishes for end-of-life medical care, Mrs. Klinger didn't feel she could tell the doctors when to stop. As a result, her husband was kept alive for months, first on a mechanical ventilator in the intensive care unit, and then with insulin drips, feeding tubes, and other invasive treatments-all the while appearing agitated and distressed. Now as Mrs. Klinger is thinking about her own relationship with the medical care system, she wonders what can she do to avoid unwanted medical treatments if and when the time comes that she cannot speak for herself.
Advance Directives: identifying possible barriers in implementation and potential remedies
Open Journal of Psychiatry & Allied Sciences
Advance Directives (AD) are the legal right of every adult individual, who has the mental capacity to decide at the time of making AD, irrespective of one's previous mental illness. AD seem to be an answer for many concerns and make it possible for an individual to take or retain control over one's care by specifying treatment choices, well in advance and by naming someone as a Nominate Representative (NR) to make medical decisions once one is no longer able to do so. It can be expected that many barriers in the implementation of AD will be encountered that cannot be overlooked and active steps need to be taken to explore the possible barriers standing in the way of its effective implementation in our country. In short, it can be concluded that it is a challenging time for the mental health community as we live in a world of scarce workforce and millions of people need mental health services which demands urgent action. Despite the backing of the new law, we are well aware that we have a massive challenge on our hands. Hence, it is essential to accept the crucial role of country leadership in efforts to improve the mental health along with the critical part of civil society, media, and others to account for health outcomes. The purpose of this article is to collect the blinding flashes of insight to begin the prediction of barriers to AD's implementation and possible solutions.
Frontiers in Psychology
Background and AimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant de...