Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and car...
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| Format: | Article |
| Language: | English |
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SMW supporting association (Trägerverein Swiss Medical Weekly SMW)
2018-12-01
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| Series: | Swiss Medical Weekly |
| Subjects: | |
| Online Access: | https://www.smw.ch/index.php/smw/article/view/2559 |
| _version_ | 1811194362902609920 |
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| author | Francesca Bosisio Ralf J Jox Laura Jones Eve Rubli Truchard |
| author_facet | Francesca Bosisio Ralf J Jox Laura Jones Eve Rubli Truchard |
| author_sort | Francesca Bosisio |
| collection | DOAJ |
| description |
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care.
Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer’s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient’s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient’s cognitive impairments and lay out dementia-specific scenarios.
Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.
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| first_indexed | 2024-04-12T00:25:56Z |
| format | Article |
| id | doaj.art-91e8be3a05e84e6d89fc64edde77a20c |
| institution | Directory Open Access Journal |
| issn | 1424-3997 |
| language | English |
| last_indexed | 2024-04-12T00:25:56Z |
| publishDate | 2018-12-01 |
| publisher | SMW supporting association (Trägerverein Swiss Medical Weekly SMW) |
| record_format | Article |
| series | Swiss Medical Weekly |
| spelling | doaj.art-91e8be3a05e84e6d89fc64edde77a20c2022-12-22T03:55:33ZengSMW supporting association (Trägerverein Swiss Medical Weekly SMW)Swiss Medical Weekly1424-39972018-12-01148515210.4414/smw.2018.14706Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challengesFrancesca Bosisio0Ralf J Jox1Laura Jones2Eve Rubli Truchard3Chair of geriatric palliative care, Lausanne University Hospital and University of Lausanne, Switzerland; Palliative and supportive care service, Lausanne University Hospital and University of Lausanne, SwitzerlandChair of geriatric palliative care, Lausanne University Hospital and University of Lausanne, Switzerland; Palliative and supportive care service, Lausanne University Hospital and University of Lausanne, SwitzerlandChair of geriatric palliative care, Lausanne University Hospital and University of Lausanne, Switzerland; Palliative and supportive care service, Lausanne University Hospital and University of Lausanne, SwitzerlandChair of geriatric palliative care, Lausanne University Hospital and University of Lausanne, Switzerland; Service of geriatric medicine and geriatric rehabilitation, Lausanne University Hospital and University of Lausanne, Switzerland Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care. Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer’s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient’s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient’s cognitive impairments and lay out dementia-specific scenarios. Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP. https://www.smw.ch/index.php/smw/article/view/2559advance care planningadvance directivesAlzheimer's diseasecare plandementia |
| spellingShingle | Francesca Bosisio Ralf J Jox Laura Jones Eve Rubli Truchard Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges Swiss Medical Weekly advance care planning advance directives Alzheimer's disease care plan dementia |
| title | Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges |
| title_full | Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges |
| title_fullStr | Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges |
| title_full_unstemmed | Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges |
| title_short | Planning ahead with dementia: what role can advance care planning play? A review of opportunities and challenges |
| title_sort | planning ahead with dementia what role can advance care planning play a review of opportunities and challenges |
| topic | advance care planning advance directives Alzheimer's disease care plan dementia |
| url | https://www.smw.ch/index.php/smw/article/view/2559 |
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