Planning for the End of Life for People with Dementia - Part 2

This publication is a discussion about additional end-of-life options which may become legally available at some time in the future, i.e., assisted death (usually called euthanasia or assisted suicide). Alzheimer's Australia is not advocating that such options become available and takes a neutral position about them. However, there is a need for an informed debate on the issues, given that well-conducted research indicates that a significant proportion of the community supports making such options available.Some people believe that they should have the right to make decisions about their own bodies and about the way they die; in other casespeople see the current legal and medical options as inadequate. While Australia was the first place in the world to pass legislation allowing both euthanasia and physician-assisted suicide (i.e. the Northern Territory Rights of the Terminally Ill Act (1995)), that legislation was overturned by the Commonwealth's Euthanasia Laws Act (1997) and at present these options are illegal throughout Australia. However, given that assisted dying Bills are regularly presented to state/territory parliaments in Australia it is possible that, at some time in the future, legislation will be passed that allows such options. It is therefore important for the arguments for and against assisted dying to be understood and for open debate to be encouraged. We hope that the information provided in this document will contribute to that debate.Section 2 of Part 2 asks: What is doctor-assisted dying*? and identifies what isand what is not euthanasia. In Section 3, arguments for and against doctor-assisted dying are provided and in Section 4 some issues which relate specifically to assisted dying for people with dementia are considered

Knowledge About and Attitudes towards End of Life Care for Gay, Lesbian, Bisexual & Transgender People (Phase 2)

Increasing evidence suggests that many gay, lesbian, bisexual and transgender (GLBT) people are being denied their legal rights in their own end-of-life care and the end-of-life care of their partners and other important people in their lives. A study in the Northern Rivers region of NSW in 2009, which investigated end-of-life care issues for GLBT people and the use of legal mechanisms such as Advance Care Planning to support the rights of GLBT people at the end of life (Lienert T, Cartwright C, Beck K. 2010) found evidence of active discrimination and abuse of GLBT people. Building on the findings of the Phase 1 study, a second State-wide study funded by a grant from the Law and Justice Foundation of NSW was conducted in 2009-2010.Stage 1, which is the subject of this Report, is a state-wide hard copy and on-line survey and a series of in-depth interviews

The Experiences of Gay, Lesbian, Bisexual and Transgender People around End-of-Life Care

All States and Territories in Australia have implemented legislation relating to end-of-life decision-making and substitute judgment. However, reports to relevant legal and community services indicate that many gay, lesbian, bisexual and transgender (GLBT) people in NSW -- estimated to be about four to five percent of the population -- are being denied their legal rights in the end-of-life care of their partners and other important people in their lives

The legal role of medical professionals in decisions to withhold or withdraw life sustaining treatment: Part 3 (Victoria)

This is the final article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Victoria. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training that medical professionals receive on issues such as refusal of treatment certificates and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Victoria. The article also draws together themes from the series as a whole, including conclusions about the need for more and better medical education and about law reform generally

Factors relating to home telehealth acceptance and usage compliance

Aim: This paper investigates the acceptance of in-home telehealth by frail older adults and carers of the Transition Care Program (TCP), and evaluates telehealth acceptance as a predictor for usage compliance. Method: A stratified random sample of participants was allocated to one of five groups: either a control group or to receive telehealth monitoring of their vital signs for a period of 12 or 24 weeks; with or without a medical alarm pendant. Results: Before being trained in and using telehealth, the majority of participants and carers demonstrated acceptance of the technology by reporting that they perceived it would be “useful” and “easy to use.” This acceptance was also reported post-TCP (up to 12 weeks of usage). The “perceived ease of use” of the telehealth equipment increased significantly from pre-telehealth training and usage to post-TCP (up to 12 weeks of usage) (P = 0.001). There was no change, (pre-training and usage to post-TCP) in the “perceived usefulness” of the telehealth equipment. The telehealth acceptance constructs of “ease of use” and “usefulness,” at pre-telehealth training and usage, approached statistical significance as a predictor of future compliance (P = 0.06). “Perceived ease of use,” at pre-training and usage, had a positive relationship with future compliance (P = 0.02). Conclusion: There is currently limited knowledge about the influences and determinants of home telehealth compliance in frail older people and their carers, potentially a significant user group for the technology into the future. This study’s finding that frail older people and their carers perceive that home telehealth is useful and easy to use demonstrates their acceptance of home telehealth as a therapeutic tool. Further, perceived ease of use of home telehealth is a significant predictor of compliance with frail older people and their carers’ use of home telehealth. Additional research is required in order to identify other influences and determinants of home telehealth compliance with this group. Knowledge about the influences and determinants of home telehealth compliance may assist the development of targeted interventions aimed at encouraging high compliance with users who are recording lower reading rates

Doctors' knowledge of the law on withholding and withdrawing life-sustaining medical treatment

Objectives To examine the level of knowledge of doctors about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity, and factors associated with a higher level of knowledge. Design, setting and participants Postal survey of all specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in New South Wales, Victoria and Queensland. Survey initially posted to participants on 18 July 2012 and closed on 31 January 2013. Main outcome measures Medical specialists’ levels of knowledge about the law, based on their responses to two survey questions. Results Overall response rate was 32%. For the seven statements contained in the two questions about the law, the mean knowledge score was 3.26 out of 7. State and specialty were the strongest predictors of legal knowledge. Conclusions Among doctors who practise in the end-of-life field, there are some significant knowledge gaps about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity. Significant consequences for both patients and doctors can flow from a failure to comply with the law. Steps should be taken to improve doctors’ legal knowledge in this area and to harmonise the law across Australia

Medical education and law: withholding/withdrawing treatment from adults without capacity

BACKGROUND - Law is increasingly involved in clinical practice, particularly at the end of life, but undergraduate and postgraduate education in this area remains unsystematic. We hypothesised that attitudes to and knowledge of the law governing withholding/withdrawing treatment from adults without capacity (the WWLST law) would vary and demonstrate deficiencies among medical specialists. AIMS - We investigated perspectives, knowledge and training of medical specialists in the three largest (populations and medical workforces) Australian states, concerning the WWLST law. METHODS - Following expert legal review, specialist focus groups, pre-testing and piloting in each state, seven specialties involved with end-of-life care were surveyed, with a variety of statistical analyses applied to the responses. RESULTS - Respondents supported the need to know and follow the law. There were mixed views about its helpfulness in medical decision-making. Over half the respondents conceded poor knowledge of the law; this was mirrored by critical gaps in knowledge that varied by specialty. There were relatively low but increasing rates of education from the undergraduate to continuing professional development (CPD) stages. Mean knowledge score did not vary significantly according to undergraduate or immediate postgraduate training, but CPD training, particularly if recent, resulted in greater knowledge. Case-based workshops were the preferred CPD instruction method. CONCLUSIONS - Teaching of current and evolving law should be strengthened across all stages of medical education. This should improve understanding of the role of law, ameliorate ambivalence towards the law, and contribute to more informed deliberation about end-of-life issues with patients and families

Doctors' perspectives on law and life-sustaining treatment: Survey design and recruitment strategies for a challenging cohort

Background - Palliative medicine and other specialists play significant legal roles in decisions to withhold and withdraw life-sustaining treatment at the end of life. Yet little is known about their knowledge of or attitudes to the law, and the role they think it should play in medical practice. Consideration of doctors’ views is critical to optimizing patient outcomes at the end of life. However, doctors are difficult to engage as participants in empirical research, presenting challenges for researchers seeking to understand doctors’ experiences and perspectives. Aims - To determine how to engage doctors involved in end-of-life care in empirical research about knowledge of the law and the role it plays in medical practice at the end of life. Methods - Postal survey of all specialists in palliative medicine, emergency medicine, geriatric medicine, intensive care, medical oncology, renal medicine, and respiratory medicine in three Australian states: New South Wales, Victoria, and Queensland. The survey was sent in hard copy with two reminders and a follow up reminder letter was also sent to the directors of hospital emergency departments. Awareness was further promoted through engagement with the relevant medical colleges and publications in professional journals; various incentives to respond were also used. The key measure is the response rate of doctors to the survey. Results - Thirty-two percent of doctors in the main study completed their survey with response rate by specialty ranging from 52% (palliative care) to 24% (medical oncology). This overall response rate was twice that of the reweighted pilot study (16%). Conclusions - Doctors remain a difficult cohort to engage in survey research but strategic recruitment efforts can be effective in increasing response rate. Collaboration with doctors and their professional bodies in both the development of the survey instrument and recruitment of participants is essential

Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia

Background: In this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs. Methods: An anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. Results: The response rate differed between countries (39–68%). The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%. Conclusion: There are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude