Ethics of living and dying with dementia

Author(s):  
Cees Hertogh ◽  
Marike de Boer ◽  
Simone Hendriks

The gradual progression of dementia means there has to be a constant search for a reasonable balance between supporting autonomy and ensuring proper representation. Good end-of-life care for people with dementia depends on adequate advance care planning (ACP), starting early in the disease process. Where possible, it involves striving for joint decision-making with the patient and next-of-kin about (future) medical treatment and (future) care. Written advance directives may support representatives of incompetent patients in their role of surrogate decision maker, but the contents of the directive require interpretation in the context of ACP. The concept of ‘palliative care’ offers a (policy) framework for ACP as well as moral guideline for dealing with written advance directives of patients with dementia.

Author(s):  
Cees Hertogh ◽  
Jenny van der Steen

The gradual progression of dementia means there has to be a constant search for a reasonable balance between supporting autonomy and ensuring proper representation. ∙ Good end of life care for people with dementia depends on adequate advance care planning, startling early in the disease process ∙ Where possible, it involves striving for joint decision-making with the patient and next-of-kin about (future) medical treatment and (future) care. ∙ Written advance directives may support representatives of incompetent patients in their role of surrogate decision maker, but the contents of the directive require interpretation in the context of advance care planning. ∙ The concept of “palliative care” offers a (policy) framework for advance care planning as well as moral guideline for dealing with written advance directives of patients with dementia.


2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.


Neurology ◽  
2022 ◽  
Vol 98 (2) ◽  
pp. 73-79
Author(s):  
Justin A. Sattin ◽  
Winston Chiong ◽  
Richard J. Bonnie ◽  
Matthew P. Kirschen ◽  
James A. Russell ◽  
...  

This position statement briefly reviews the principle of informed consent, the elements of decisional capacity, and how acute stroke may affect this capacity. It further reviews the role of surrogate decision-making, including advance directives, next of kin, physician orders for life-sustaining treatment, and guardianship. In some cases of acute stroke in which the patient lacks decisional capacity and no advance directives or surrogates are available, consent to treatment may be presumed. The document describes the rationale for this position and various considerations regarding its application to IV thrombolysis, neuroendovascular intervention, decompressive craniectomy, and pediatric stroke. The document also reviews consent issues in acute stroke research.


2020 ◽  
pp. bmjspcare-2020-002304
Author(s):  
Judith Rietjens ◽  
Ida Korfage ◽  
Mark Taubert

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.ResultsDifferent models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.ConclusionsACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.


Gerontology ◽  
2019 ◽  
Vol 66 (1) ◽  
pp. 40-46 ◽  
Author(s):  
Klaus W. Bally ◽  
Tanja Krones ◽  
Ralf J. Jox

2020 ◽  
Vol 49 (Supplement_1) ◽  
pp. i30-i32
Author(s):  
S A Hopkins ◽  
P Athauda ◽  
A Halliday ◽  
K Honney ◽  
A Jakupaj ◽  
...  

Abstract Introduction When a doctor is informed of a patient’s future care preferences if they were to lose capacity, there is an ethical and legal obligation to share this information with the treating medical team. In frail older patients, conversations about treatment preferences often occur during hospital admission. We sought to assess the communication of these preferences to the patient’s GP. Methods Retrospective chart review of consecutive discharges from acute geriatric wards across seven hospitals. Records were excluded if the patient was admitted for less than 48 hours, was under orthogeriatric care, or died in hospital. Results 339 notes were included, 41-50 from each hospital. GPs were informed of the resuscitation status of 28% of all patients. 52% of patients had an inpatient DNACPR, the GP was informed of 54% of these. 36% of patients had an inpatient ceiling of treatment documented, of which GPs were informed of 19%. 53% of hospital DNACPRs were converted into community DNACPRs on discharge: GPs were informed of only 24% of new community DNACRPs. 47% of patients discharged with a new community DNACPR lacked capacity to be involved in that decision; for just 6% of these was the GP asked to review the DNACPR order in the community. Inpatient Advance Care Planning (ACP) discussions were held for 9% of patients, of which the GP was informed in 59% of cases. 49% of ACP conversations involved the next-of-kin but not the patient. Among patients who had a new DNACPR decision made during their admission (n=124), there was documentary evidence in only 25% that the patient or next-of-kin was informed whether this was time-limited or indefinite. Conclusions Communication from hospitals to GPs about resuscitation, ceiling of care and ACP discussions is very limited. For patients who have expressed ongoing future care preferences, there is a legal obligation to share this information with the treating medical team, which on discharge is the GP. There is poor documentary evidence of discussions with patients about whether DNACPR decisions are time-limited or indefinite. Furthermore, many hospitalised frail patients lack capacity to make DNACPR decisions but they may subsequently regain capacity, particularly those with delirium. Despite this, GPs are rarely asked to review new community DNACPRs, including those made for patients without capacity.


2017 ◽  
Vol 45 (3) ◽  
pp. 402-420
Author(s):  
Dana Howard

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will.


2012 ◽  
Vol 19 (1) ◽  
pp. 61-68 ◽  
Author(s):  
Sjef Gevers ◽  
Joseph Dute ◽  
Herman Nys

Abstract Informal or unofficial representation refers to the practice (more common in some European jurisdictions than in others), that persons not designed by a court or by the patient himself, make medical decisions on the patient’s behalf in case of their incompetence. If the law provides for this, it is usually next of kin (spouse, children, brothers and sisters, etc.) who are allowed to act in such a capacity. Informal representation raises several questions. Are family members always familiar with what their relative would have wished, ready to take responsibility, and not too much reigned by their emotions? The basic legal concern is whether there are sufficient procedural and other safeguards to protect the incompetent patient from representatives who do not serve their best interests. In addressing these issues, after a brief survey of the law in the Netherlands as compared with that in Belgium, Germany and England/Wales, we will argue that informal representation as such is not at variance with international and European standards. However, an ‘informal’ approach to surrogate decision-making should always go together with sufficient protection of the incompetent patient, including procedural safeguards with regard to the decision that the patient is incompetent, limits to the decision-making power of informal representatives and effective forms of conflict resolution.


2021 ◽  
Vol 83 (4) ◽  
pp. 1767-1773
Author(s):  
Heather Ma ◽  
Rachel E. Kiekhofer ◽  
Sarah M. Hooper ◽  
Sarah Dulaney ◽  
Katherine L. Possin ◽  
...  

Background: Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective: In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods: Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results: At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion: Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.


2021 ◽  
pp. 205715852110140
Author(s):  
Annika Tetrault ◽  
Maj-Helen Nyback ◽  
Heli Vaartio-Rajalin ◽  
Lisbeth Fagerström

Advance Care Planning can be used to engage people with dementia in decision-making about future care. The current study aims to advance the state of knowledge about Advance Care Planning interventions aimed at older people with early-stage dementia and to describe the effects of various interventions as well as the feedback on the interventions from this patient group and their family caregivers. The study is reported in accordance with PRISMA for scoping reviews. The search for studies and reports included electronic databases, websites, books, and reference lists. Data from the selected studies, including publication year, title, purpose, study population, intervention, methods, and results, were extracted. Six full-text articles were identified as suitable for inclusion. The six interventions had differing approaches. A supportive structure was helpful for both people with dementia and family caregivers. The feeling of being listened to and engaged in the care planning seems to be of most importance, not the intervention design itself.


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