Advance Directives, Dementia, and Physician-Assisted Death

Menzel, Paul T.; Steinbock, Bonnie

doi:10.1111/jlme.12057

Cited by 58 publications

(43 citation statements)

References 20 publications

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“…Here we will mainly discuss the decision-making process in the use of advance directives (see e-appendix), as these directives may highly improve the quality of end of life care, and are reasonably well evidenced (see E-appendix on systematic review of this topic). For the delicate debate on euthanasia and end of life care the reader is referred to other papers 482,483 .…”

Section: End Of Life Carementioning

confidence: 99%

Defeating Alzheimer's disease and other dementias: a priority for European science and society

Winblad

Amouyel

Andrieu

et al. 2016

The Lancet Neurology

1,375

1,122

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on Defeating Alzheimer's Disease and other dementias: a priority for European science and society Dementia includes a range of neurological disorders characterized by memory loss and cognitive impairment. The most common early symptom is difficulties remembering recent events. With the development of the disease, symptoms occur such as disorientation, mood swings, confusion, more serious memory loss, behavioural changes, difficulties in speaking and swallowing, as well as walking. Alzheimer Disease (AD) is the most common form of dementia (50-70% of dementia cases). Increasing age is the most important risk factor for AD.In 2012 and 2015, the World Health Organization (WHO) presented reports suggesting that Alzheimer Disease and other dementias (ADOD) should be regarded as a global public health priority 1,2 . Similar policy declarations have been presented by the European Union 3 , as well as by some individual countries. These policy declarations acknowledge trends that sometimes are described in terms of an epidemic or a "time-bomb". In 2015, the number of people affected by dementia worldwide is estimated to be almost 47 million and the numbers are expected to reach 75 million by 2030 and 131 million by 2050, with the greatest increase in low and middle income countries. The main reason for the increase is the global aging trend, since dementias are associated with a high age-specific prevalence, i.e., increasing prevalence with higher age. The global economic costs of dementia were estimated to be more than 600 billion USD in 2010 6 and 818 billion USD in 2015 5 . The direct costs in the medical and social care sectors, 487 billion USD, represent 0.65% of the aggregated global gross domestic products (GDP), which is an enormous economic impact of a single group of disorders, especially considering that 87% of the costs occur in high income countries. Care of people with dementia impacts several sectors in the society with the social care (long term care and home services) and informal care sectors constituting the greatest proportions -even greater than direct medical care 6 . In cost of illness studies, European cost estimates in 2010 ranged between 238,6 billion USD 6 and 105,6 billion € 7 .However, the economic and societal burden of ADOD corresponds to the aggregate burden of people with dementia and their next of kin. The progressive nature of dementia can influence the whole life situation for families over many years. So far, no cure or substantial symptom relieving treatment is available for ADOD. Thus, the impact of this terminal disease is already today enormous, and given the predictions for the future, ADOD represents an enormous challenge for any society, and particularly to the ageing European society.Further knowledge is needed regarding the causes of ADOD. A more complete understanding of the disease mechanisms is required for new diagnostic and therapeutic strategies. There is also a need to establish new cell-based and animal models representing, as far as possible, major clinical component...

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Section: End Of Life Carementioning

confidence: 99%

Defeating Alzheimer's disease and other dementias: a priority for European science and society

Winblad

Amouyel

Andrieu

et al. 2016

The Lancet Neurology

1,375

1,122

View full text Add to dashboard Cite

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“…The second is one we made in an earlier paper . The values of an individual can indeed change in the early and middle stages of dementia.…”

Section: The Moral Case For Advance Directivesmentioning

confidence: 79%

“…The second is one we made in an earlier paper. 11 The values of an individual can indeed change in the early and middle stages of dementia. At some point in the progression into severe dementia, however, the individual no longer has enough of a mind to change, and certainly not enough of a mind to change the advance directive itself.…”

Section: The Moral Case For Advance Directivesmentioning

confidence: 99%

Advance Directives for Refusing Life‐Sustaining Treatment in Dementia

Steinbock¹,

Menzel²

2018

Hastings Center Report

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Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life. Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.” A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves.

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“…It is not easy to predict the experience of mental decline or its future effects on one’s quality of life. Personality changes due to dementia will vary, and a person may experience moments of lucidity, showing her ‘old self', even with severe dementia 3. Anticipating the burden of future health decline is complicated because people underestimate their ability to adjust to their health states after developing disease or disability 18.…”

Section: Discussionmentioning

confidence: 99%

Advance euthanasia directives: a controversial case and its ethical implications

2018

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Authorising euthanasia and assisted suicide with advance euthanasia directives (AEDs) is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer's disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs.

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Advance Directives, Dementia, and Physician-Assisted Death

Cited by 58 publications

References 20 publications

Defeating Alzheimer's disease and other dementias: a priority for European science and society

Defeating Alzheimer's disease and other dementias: a priority for European science and society

Advance Directives for Refusing Life‐Sustaining Treatment in Dementia

Advance euthanasia directives: a controversial case and its ethical implications

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