Table 4 Summary of the included studies

Beck et al. 2017 [21]

ACP

ACP for patients with dementia in long-term care

EU:

Belgium (1)

Holland (1)

Belgium & Holland (1)

UK (8)

Non-EU:

Australia (1)

USA (2)

Physicians and nurses

Long-term care setting

Qualitative

Nurses perceive the unpredictable disease trajectory as a significant barrier to both palliative care and the initiation of ACP, as ACP and the palliative approach are conceptually interconnected

Staff members often experience discomfort regarding ACP, which has been described as"reluctance"or"reserve."Possible reasons for this discomfort include hesitation to discuss death and fear of distressing the individuals under their care

One study suggests that staff members view their role as primarily focused on the preservation of life, even when this contradicts the wishes of the patient and their family

Overall, evidence from the studies indicates that nurses generally exhibit reluctance to engage in ACP within this context

Cox et al. 2013 [15]

Euthanasia and PAS

Public attitudes to death and dying in UK from 1990 on, and variability according to age, gender and ethnicity

EU:

UK (22)

Citizen: majority of respondents were older adults with samples ranging from 50 to over 80 years old

Not in hospital/care settings

Qualitative

Levels of support for euthanasia appear relatively stable, rising from 75% in 1984 to 82% in 1994 and then falling to 80% in 2005

It appears that people make clear distinctions between the acceptability of assisted dying in different circumstances depending on the nature of a person’s illness and/or who would be involved in the process

When a physician is involved, public support towards voluntary euthanasia can be as high as 80% when asked in relation to a request from a person suffering with an incurable and painful illness from which they will die

Non-voluntary euthanasia (when a patient cannot ask for herself at the moment, due to physical and cognitive limitations): one study reports that there is little support when relatives are in disagreement with physicians (34%), while there is more support when there is an agreement (79%); 76% support is reached when there are advanced directives from the patient, despite relative’s opinion

Respondents are more conservative towards others than themselves

Evans et al. 2012 [22]

ACP

Attitudes, use and Physicians’ compliance

EU:

Germany (32)

Physicians

EoL care setting

Mix-methods

German physicians experience discomfort when discussing ACP

Physicians desire a high degree of bindingness to remove any legal uncertainties related to their use

Hendry et al. 2013 [16]

Euthanasia and PAS

People’s views, opinions, perceptions, attitudes and experiences in relation to assisted dying

EU:

Belgium (2)

Finland (2)

France (4)

Greece (2)

Ireland (1)

Norway (1)

Poland (1)

Sweden (2)

Switzerland (1)

The Netherlands (7)

UK (1)

Non-EU (98)

General public of adults 18 years old or older, including patients and

carers

Hospital and non-hospital settings

Qualitative

The review takes into account a great number and variety of studies. Four themes of concerns are found among people through the qualitative studies and surveys:

Concerns about poor quality of life, meaning unbearable pain and suffering, becoming a burden to oneself and others, hopelessness of not seeing a future for oneself

Concerns about good quality of death, meaning having control and autonomy over one’s death

Concerns about abuse if assisted dying is legalized, meaning that vulnerable groups could be discriminated, there could be financial pressures and lack of safeguards

Relevance of individual stance, such as one’s personal view (or religious), one’s experience of suffering and death

From qualitative studies, between 30 and 77% of the participants supported assisted dying

Relatives are more supportive (58%–77%) compared with dementia patients (46%) and terminal cancer patients (47%). People with disabilities expressed the lowest level of support (30%–33%)

Jabbarian et al. 2018 [23] 

ACP

ACP practice in chronic respiratory disease

EU:

Portugal (1)

The Netherlands (2)

UK (5)

Non-EU:

Australia (3)

Canada (2)

USA (8)

Physicians and nurses (HCPs)

(undifferentiated)

Outpatient, inpatient clinics,

General practices

Mix-methods

Two quantitative studies involve patients with Chronic obstructive pulmonary disease and chronic lung diseases in an outpatient setting and find that 68% and 99% of the patients, respectively, are interested in discussing EoL care preferences

In five qualitative studies, patients with a variety of chronic respiratory diseases express willingness to discuss EoL care preferences

Two of these qualitative studies reveal some hesitation of patients to talk about EoL care preferences, mainly due to uncertainty about the stability of their preferences and the sensitive nature of the topic

Two high-quality studies and the pilot study of lower quality find that 42%–77% of HCPs recognizes the importance of discussing EoL care topics, since not discussing EoL care would limit patient choice

A study from Portugal reveals that 89% of HCPs find it difficult to engage in discussions on EoL care preferences

Two qualitative studies find that HCPs have doubts about the right moment to initiate these discussions on EoL care, and they emphasize that the timing of engaging is dependent on the patients’ disease

The role of different HCPs does not seem to make a difference

McCormack et al. 2011 [17]

Euthanasia and PAS

Exploring the attitudes of UK physicians towards euthanasia and physician assisted suicide

EU:

UK (15)

Physicians

General practices and hospitals

Mix-methods

Eleven out of fifteen studies examined euthanasia, ten out fifteen studies examined PAS

The majority of physicians opposed euthanasia in all studies, except one

The majority of physicians opposed PAS in eight studies

Six studies looked at the percentage of physicians willing to perform euthanasia if it was legalized, and the mean was 22.7%

Eight studies looked at the percentage of physicians willing to perform PAS if it was legalized, and the mean was 24.9%

Only one paper compared attitudes towards assisted dying in terminal versus non-terminal patients (the latter having instead ‘an incurable and painful illness’): physicians opposed both, but there was less support in the case of non-terminal patients

Rodrigues et al. 2020 [24]

Palliative sedation 

Palliative sedation for patients with existential suffering

EU:

Belgium (1)

Germany (1)

The Netherlands (2)

Switzerland (2)

Multiple countries (3)

Non-EU:

Canada (3)

Japan (1)

USA (4)

Physicians 

Hospital setting

Mix-methods

There are three kinds of attitudes among physicians: ‘for’, ‘against’ and ‘neutral/undecided’

The percentages vary: in the one European study, German physicians showing positive attitudes are 37%−61%, those showing negative attitudes are 23%−42%, and those showing neutral or undecided attitudes are16%−20%

Positive attitude towards palliative sedation for patients with existential suffering grounded on the belief psychological interventions are not appropriate for all patients

Some physicians say that it would be unethical to refuse palliative sedation if patients request it

Palliative sedation for patients with existential suffering is a more humane solution than euthanasia and PAS, because physicians can accompany and care for their patients until death

Negative attitudes: physicians against palliative appeal to the inconsistency in symptom classification and the complex interaction between physical and psycho-existential suffering

For other physicians, palliative sedation represents abandonment of the patient, as if it was a semi-euthanasic act or a form of PAS

Palliative sedation for patients with existential suffering can also be difficult to manage when the prognosis suggests the patient will live for a long time

Rodríguez-Prat et al. 2019 [18]

Euthanasia and PAS

What motives the wish to hasten death, and how is that related to requests for euthanasia and/or PAS?

EU:

Germany (2)

Switzerland (3)

The Netherlands (1)

Non-EU:

Australia (1)

Canada (3)

China (1)

Thailand (1)

USA (4)

Patients of 18 years old or older, excluded those with advanced diseases

Hospitals, nursing homes, hospices, outpatient clinics

Qualitative

The fear of causing loved ones to suffer and the expectation of a future in which they would be a burden to others were primary motives for wanting to end their lives, even in patients who were not suffering at that particular moment in life

Scheeres-Feitsma et al. 2023 [19]

Euthanasia and PAS

How family is involved in situations of euthanasia or PAS and dementia, and how people with dementia and their family perceive this involvement

EU:

Switzerland (1)

The Netherlands (3)

UK (5)

Non-EU:

Australia (1)

Canada (2)

New Zealand (1)

USA (4)

Patients with dementia, family caregivers, family members

Qualitative

Findings are very different as the review collects studies from different moments in time and different geographical areas

Patients with dementia do not want to be a burden and fear to be a burden in the future. Being a burden (especially to their children) can be a driving force for requesting euthanasia and PAS

At the same time, in other studies euthanasia and PAS are not mentioned when talking about good care at EoL

One study in the UK from 1996 shows that patients affected by dementia more likely opposed PAS (for incompetent patients who had designated person assigned in advance) than non-patients

For patients, reasons to request euthanasia/PAS are: relieving pain and having it as a choice

A more recent study (2020) in the Netherlands shows that patients with dementia may anticipate euthanasia request for a later stage but then decide to postpone it when the time comes

Family of patients with dementia become aware that they would not want to be a burden for others, so they tend to be in favor for euthanasia/PAS for themselves. Being a caregiver induces a more positive attitude towards euthanasia/PAS

Most studies find that family members can feel a moral obligation to act the euthanasia wish of their loved ones, initiating the conversation and making sure that they establish a consistent will over time

Some even wish, in retrospect, that they should have helped their loved ones themselves

One study shows that there are members feeling they should prevent euthanasia/PAS

Support grows in presence of advanced directive, when patients is in a terminal stage, when there is pain or distress that cannot be relieved

Lack of good quality of life and diminishing dignity due to a loss of decorum often correspond to a positive attitude toward euthanasia/PAS

Tomlinson et al. 2015 [30]

Euthanasia and PAS

Focused on people affected by dementia

EU:

Finland (1)

The Netherlands (5)

UK (2)

Non-EU:

Australia (1)

Brazil (1)

USA (8)

General public, mild dementia patients, nurses,

physicians

Mix-methods

In higher quality studies, caregivers are reported to show 50% or higher support for euthanasia and PAS

One study finds that 77% of caregivers are in favor of assisted dying in the Netherlands

Lower quality studies show lower support but they may be biased. One of them may show the reluctancy of caregivers to be the ones asking for assisted dying

Studies on euthanasia for patients with dementia show that they are less favorable to euthanasia compared to other terminal illness

One study based in the UK shows that people are more conservative regarding euthanasia and PAS for others, than for themselves

The topic of having advanced directives from when the patient is competent seems crucial

Six studies investigating both primary and hospital physician

All consistently report opposition to euthanasia and PAS for dementia patients

Four studies indicate than less than 10% of physicians would support or provide euthanasia, even where it is legal

One study shows increased support, provided that the person had advanced directives

Physicians may be more supportive of PAS in mild dementia than euthanasia in severe dementia without advanced directive

The majority of the six studies indicates that approximately one third (or just under) supports euthanasia in dementia patients

A recent study in the Netherlands indicates higher levels of support for euthanasia in advanced dementia patients, if they have advanced directives for euthanasia (58% in favor)

Fewer nurses (31%) are in favor of PAS for mild dementia patients

One cross-cultural study found that across seven countries only 23% respondents felt able to ‘ethically justify’ euthanasia; however, this may not indicate that they would not be in favor of it

Vanderspank Wright et al. 2018 [25] 

Withholding or withdrawing life-sustaining treatment

Experiences of intensive care nurses who care for patients during the process of withdrawal of life-sustaining treatments

EU:

Norway (1)

Sweden (1)

UK (3)

Non-EU

Australia (1)

Canada (3)

New Zeland (2)

South Africa (1)

USA (1)

Nurses most of them were female, with an experience in the ICU from 4 months to 35 years

Critical care units, specifically, intensive care units

Mix-methods

Coordinating treatment withdrawal requires effective communication between nurses, physicians, and families to ensure a dignified death for the patient

Nurses find themselves ‘in between’, balancing patients’ and families’ wishes, their personal beliefs and organizational demands

Conflict and/or discordance is common during the withdrawal process due to procedural, organizational, contextual and relational factors affecting decisions

Decision-making delays and prolonged withdrawal of treatment are major sources of conflict between nurses and physicians, and gradual withdrawal is at times perceived by nurses as not beneficial for the patient

Lack of clear communication and guidance contribute to said conflicts

Nurses prefer that the withdrawal occurs with a nurse who knows the patient and has cared for her previously

Grief and emotional distress had long lasting impact to most of the nurses

Debriefing sessions (or others) may help nurses cope with the challenges and distress

Training on withdrawal and frequent updates should be provided to all nurses in intensive care units

Implementation of guidelines for the withdrawal of life sustaining treatments could decrease conflicts and discordance