Conceptual framework for assisted dying for individuals with dementia: Views of experts not opposed in principle.

Dementia is one of the prominent conditions for which an aging population has been seeking end-of-life solutions such as assisted dying. Individuals with dementia, however, are often unable to meet the eligibility criteria of being mentally competent and are thus discriminated against in relation to assisted dying laws. Provided that the assisted death directive is being made in sound mind, it is still of concern whether these advance directives can be appropriately framed and safeguarded to protect the wish of these vulnerable individuals while preventing harm. Therefore, to establish consensus views of experts on primary issues of, and concerns about, assisted dying for individuals with dementia as well as exploring tentative conceptual framework to safeguard practice and application, a three-round Delphi study was conducted. A core group of 12 experts from five countries was recruited comprising expertise in domains relevant to assisted dying and dementia. A semantic-thematic approach was applied to analyze the 119 generated statements. Evaluation of these research statements resulted in full consensus of 84 (70%) items. Our primary findings highlight seven core domains: applicability of assisted dying for dementia; ethical, practical, and pathological issues regarding the application of assisted dying; and ethical, legal, and professional recommendations for the ways forward. Despite the issues surrounding the provision of assisted death for individuals with dementia, our findings lead us to cautiously conclude that devising "adequate" safeguards is achievable. The result of this research may benefit future research and practice.

A Netnographic Approach: Views on Assisted Dying for Individuals With Dementia.

Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers' feelings; and moral/personal dilemmas. Findings reveal that the majority of communities' contributors fear developing dementia. They support the provision of advance euthanasia directives-written by competent patients-to prevent unnecessary suffering, and protect patients' wishes and freedom of choice when decision-making competency is lost.

Medical students, sensitive examinations and patient consent: a qualitative review.

AIM: We set out to explore the question, what ethical challenges do medical students identify when asked to perform or observe a sensitive examination, given a historical background relevant to this context. METHOD: Thematic analysis of 21 Ethics Reports from 9 female and 12 male students. RESULTS: Overall 14 students undertook a sensitive examination without the patient's consent; three did not carry out a sensitive examination because of a lack of consent; and two students (or their senior colleagues) gained the patient's written consent for the student to undertake the examination. One patient refused the student's request for consent to perform a digital rectal examination; and in the final case, verbal consent was given by the patient for the student to observe a bimanual examination only. Three interrelated core themes arose from thematic analysis of the research question: systemic constraints on getting consent; internal conflicts of interest; and, power and hierarchy. CONCLUSIONS: A number of senior medical students at our institution disclosed observing or performing sensitive examinations on patients without the patients' knowledge or consent.

Compassion from a palliative care perspective.

BACKGROUND: Compassion is a core virtue in medicine and lies at the heart of good medical care. It connects us to each other and reflects our need for relationships with others. AIM: Our aim is to explore how palliative care patients perceive, understand and experience compassion from health professionals, and to inform clinical practice. METHODS: Seven hospice managers in the North Island of New Zealand were contacted and invited to join the study. Twenty participants expressed a desire to participate and were involved in semi-structured face-to-face interviews. A set of questions guided the interviewers with interviews lasting between 15-60 minutes. RESULTS: In regards to the question, what is your understanding of compassion?, four central themes emerged: connection, presence and warmth, respect and caring. When asked, what advice can you give to trainee health professionals?, participants articulated four themes: connecting with patients and talking in a way they can understand, treating the person with respect, showing interest in them and being a positive presence for them. CONCLUSIONS: Compassion was seen as a connection between the carer and the patient. Compassion is having a positive presence and warmth; an attitude of respect and caring. The main advice given by research participants to enhance compassion is for doctors and nurses to connect, to talk in a way that can be understood, and show interest and respect to patients facing the end of their lives.

'It's not all just about the dying'. Kaumatua Maori attitudes towards physician aid-in dying: A narrative enquiry.

AIM: To explore kaumatua attitudes towards physician aid-in dying, to gain a clear understanding of how such attitudes may influence and shape their expectations of medical care at the end of life and to assist health professionals in Aotearoa/New Zealand to address the healthcare needs of older Maori near the end of life. DESIGN: A kaupapa Maori consistent approach was undertaken. A systematic narrative technique was employed for the qualitative data analysis. Data were triangulated through independent data coding by three researchers (two of whom identified as Maori researchers), to ensure a robust and consistent method of analysis as well as adhering to a kaupapa Maori research approach. SETTING/PARTICIPANTS: Recruitment of participants was through kaumatua of Te Kupenga Hauora Maori (Maori leadership within the Faculty of Medical and Health Sciences), University of Auckland and local Auckland marae. Focus group or individual interviews (as per their preference) were undertaken with 20 Kaumatua from the Auckland region. RESULTS: Five closely interrelated themes were identified from kaumatua narratives regarding physician aid-in dying. These were (1) attitudes and understandings of physician aid-in dying, (2) influence of power, (3) significance of kawa, (4) whanau relationships and the (5) significance of wairua. CONCLUSION: The study demonstrated that for these kaumatua, medical practices that hasten death such as physician aid-in dying are 'not all just about the dying'. Tikanga and kawa are important processes and concepts to understand during death and dying, and whanau are central to such processes being respected by those involved in the dying process. These factors are so closely intertwined that they cannot be considered in separation of each other.

End-of-life medical decision making in general practice in New Zealand--13 years on.

AIMS: The aim of this study was to explore medical decision-making practices at the end-of-life made by GPs (MDEL) in New Zealand and to identify changes in practice with a previous study published in 2004. METHODS: A postal questionnaire was sent to 3,420 GPs in New Zealand in May 2013. Anonymous phone interviews were also undertaken. Analysis of the questionnaire was done on IBM SPSS Statistics 21. RESULTS: There was a 21% response rate from two mail outs. Of the 650 GPs who responded, 547 had contact with a patient prior to death and had the potential to make a MDEL. Of these, 359 (65.6%) reported making a MDEL. Of the 359 GPs who reported making a MDEL, 16 (4.5%) attributed death to a drug that had been prescribed, supplied or administered explicitly for the purpose of hastening the patient's death. The alleged involvement of nurses in practices that intentionally hasten death is high. CONCLUSION: Our study shows that some GPs have explicitly assisted their patients to die, that nurses are allegedly involved, and there is a tendency towards more discussion with patients about MDEL.

The experiences, motivations, and opinions of New Zealand's live liver donors.

AIM: To explore the motivations and experiences of New Zealand's live liver donors, and their opinions on New Zealand's current organ donation system. METHOD: An anonymous questionnaire was sent to all 45 of New Zealand's live liver donors in November 2012. RESULT: 21 responses were collated with an even gender split. Half of the participants were parents of the recipient. Despite the risks of surgery and associated post-surgical pain, all participants were satisfied by how the transplant went for the recipient and for themselves. 90% thought people should save lives if they can, with 18 (86%) disagreeing with New Zealand's current method of allowing family members to veto the deceased person's wishes on organ donation (on their driver's license). 95% thought that education was important in encouraging people to donate. CONCLUSION: This unique and informed group have experienced both what it means to have a loved one waiting for a transplant and how it feels to be an organ donor. If New Zealand is serious about wanting to increase deceased organ donation rates, we should consider the experiences such as those who have undergone live donation.

New Zealanders' attitudes toward physician-assisted dying.

OBJECTIVES: Physician-assisted dying (PAD) is legal in several countries in Europe and some states of the United States. Despite regular societal debate in New Zealand about assisted dying, little is known about what the New Zealand public think about this issue. The present study was the first to examine New Zealanders' attitudes toward assisted dying in the context of various parameters of patient suffering, and as a public policy issue. METHODS: Stratified random sampling techniques were used to elicit 677 participants from the electoral roll. They completed an anonymous questionnaire asking about the most appropriate medical response to patients who explicitly request assistance in dying, as well as their opinions around legalization of PAD. RESULTS: Overall, 78% felt PAD was the most appropriate response in certain situations while 82% felt it should be legalized. When the patient was suffering from loss of dignity, PAD was considered the most appropriate response to patients' requests for assistance in dying by 75% of respondents; when the patient was suffering from intractable pain, 65% of respondents considered PAD the most appropriate response. Almost 65% of those who wanted PAD to be legalized felt it should only be accessible to those suffering unbearably with little hope of recovery, and 46% felt that the presence of mental illness should be an exclusionary factor. CONCLUSIONS: The results have highlighted the high value respondents place on patient autonomy with regards to end-of-life choices; however the choice to hasten death is not a 'right' that should be available to all. RESULTS have clearly shown that New Zealanders believe regulation will play a key role in maintaining compliance with any assisted dying legislation, and in restricting access, so that only patients who are suffering intolerably and hopelessly are able to legally gain medical assistance to end their life.

Why do older people oppose physician-assisted dying? A qualitative study.

BACKGROUND: Physician-assisted dying at the end of life has become a significant issue of public discussion. While legally available in a number of countries and jurisdictions, it remains controversial and illegal in New Zealand. AIM: The study aimed to explore the reasons some healthy older New Zealanders oppose physician-assisted dying in order to inform current debate. DESIGN: Recorded interviews were transcribed and analysed by the authors after some edits had been made by respondents. SETTING/PARTICIPANTS: In all, 11 older participants (over 65 years) who responded to advertisements placed in Grey Power magazines and a University of Auckland email list were interviewed for around 1 h and asked a number of open-ended questions. RESULTS: Four central themes opposing physician-assisted dying were identified from the interviews: one's personal experience with health care and dying and death, religious reasoning and beliefs, slippery slope worries and concern about potential abuses if physician-assisted dying were legalised. CONCLUSIONS: An important finding of the study suggests that how some older individuals think about physician-assisted dying is strongly influenced by their past experiences of dying and death. While some participants had witnessed good, well-managed dying and death experiences which confirmed for them the view that physician-assisted dying was unnecessary, those who had witnessed poor dying and death experiences opposed physician-assisted dying on the grounds that such practices could come to be abused by others.

"I wouldn't want to become a nuisance under any circumstances"--a qualitative study of the reasons some healthy older individuals support medical practices that hasten death.

AIM: To explore the reasons some healthy older New Zealanders support medical practices that hasten death. METHODS: Recruitment was from the Voluntary Euthanasia Society of New Zealand (VESNZ), an organisation that supports legal medical assistance in dying. All participants were members of VESNZ. 106 individuals returned signed consent forms. All interviews took place in the participant's home. After 11 interviews, saturation of information was reached and interviewing was stopped. RESULTS: An important finding of this study indicates that healthy, older individuals who support medical practices that hasten death have serious concerns about their (perceived) future incapacities and dependency on others, as well as their fears around becoming a burden. The study also found that fear of future pain was not a dominant reason to support medical assistance to die. CONCLUSION: Our study provides confirmation that the fear of being a burden on others is not only felt by those facing their imminent mortality, but also by older individuals who are currently healthy and living independently in the community. We also conclude that for some older people their prior experiences with health care and dying may be a strong factor in influencing and supporting medical practices that hasten death at the end of life. We believe it is crucial to understand the reasons why people support medical practices that hasten death well in advance of such practices ever becoming legally available.

Modelling empathy in medical and nursing education.

Medical and nursing student numbers are expected to increase significantly in NZ over the next few years. The ethical, and professional and clinical skills' training of trainee health practitioners is a central and crucial component in medical and nursing education and is underpinned by a strong commitment to improve patient health and well being. In this discussion we reflect on the virtue of empathy and the importance of role modelling in the education of nurses and doctors. We endorse the claim that as medical educators, how and what we teach matters.

The ethics of deactivating a pacemaker in a pacing-dependent patient: reflections on a case study.

The decision to deactivate a pacemaker in a pacing-dependent patient is troubling for some health professionals who may regard such interventions as hastening death and therefore ethically impermissible. This may be especially concerning in situations where a patient is unable to clearly state what their preferences may be and the decision--were it to be made--will almost certainly result in the patient's immediate death. In this discussion, we reflect on some of the ethical aspects that arise when JP, a 75-year-old woman who is pacing dependent, suffers a significant brain injury, and the family request that her pacemaker be deactivated. Taking into account the clinical reality of her situation, the united wishes and loving concern of her husband and family, and their substituted judgment regarding her likely preferences, we claim that the decision to deactivate her pacemaker was ethically sound.

The morality of care: case study and review.

This case concerns aspects of the treatment of a post-surgical patient in a major public hospital in New Zealand during the author's experiences as a fourth year medical student. This case is used to consider the interlinked ethical issues of sympathy, moral virtue, dignity and how the medical environment can realign these values.

Reflecting on senior medical students' ethics reports at the University of Auckland.

In January 2010, fifth year medical students in the medical programme at the University of Auckland were asked to write a 1200-word report as part of their ethics assessment. The purpose of the report was to get students to reflect critically on the ethical dimension of a clinical case or situation they had been involved in during the past 2 years. Students were required to identify and discuss the salient ethical issues that arose as they saw them, and consider what they had personally learnt from the situation. The purpose of the following discussion is twofold: first, to outline some of the ethical issues raised by year five medical students in their ethics reports; and second, to reflect on what we, as educators and health professionals can learn from their experiences and insights.

Advance directives and older people: ethical challenges in the promotion of advance directives in New Zealand.

In New Zealand an advance directive can be either an oral statement or a written document. Such directives give individuals the opportunity to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. All consumers of health care have the right to make an advance directive in accordance with the common law. When we consider New Zealand's rapidly ageing population, the fact that more people now live with and die of chronic rather than acute conditions, the importance given to respecting autonomous decision-making, increasing numbers of individuals who require long-term residential care, and financial pressures in the allocation of medical resources, there would seem to be a number of compelling reasons to encourage individuals to write or verbalize an advance directive. Indeed the promotion of advance directives is encouraged. However, caution should be exercised in promoting advance directives to older people, especially in light of several factors: ageist attitudes and stereotypes towards them, challenges in the primary healthcare setting, and the way in which advance directives are currently focused and formulated. This paper considers some of the specific challenges that need to be addressed if the promotion of advance directives are to improve outcomes of patient treatment and care near the end of life.

Do those afflicted with dementia have a moral duty to die? A response to Baroness Warnock.

In October 2008 Baroness Warnock, medical ethicist and veteran British governmental advisor, claimed that an individual afflicted with dementia may have a moral duty to die when their continued living "wastes" the lives of others and the resources of the National Health Service. Her comments were widely publicised and largely condemned by those who responded. In this paper I consider the comments made by Baroness Warnock. She claims that some individuals and groups within society may have a moral duty to die when their lives become burdensome either to themselves or to others. I conclude that no-one has a moral duty to die, but especially not those who are afflicted with dementia.