How does euthanasia affect families

The first researcher performed line-by-line coding of the results sections of the included studies and attributed descriptive themes. The descriptive themes were discussed among the three researchers to reach consensus on their accuracy and meaning. Subsequently, analytical themes that overarch the descriptive themes were developed during group discussions and were tested for their soundness in the included studies.

The systematic search and selection process yielded 66 studies that met the inclusion criteria. The selection process is presented in the flow diagram in Fig. Only 14 of the 66 included studies had family members as study participants.

Some studies described family members as study participants, although their own opinions or experiences did not seem to be a topic of research, and the results made no further mention of them [ 32 , 33 ]. These studies were excluded from further analysis.

We also excluded a number of studies presenting results on demedicalized assistance in dying DAS. For the ethnographic studies, the original text was included instead of articles derived from the original studies.

Finally, the official governmental evaluations of the euthanasia law were included even though one might consider them grey literature, because they are an important source of empirical data. In the thematic analysis of the included studies, 19 descriptive themes were identified and four overarching analytical themes were developed. The descriptive and analytical themes are displayed in Table 3 and described in detail in the section below.

It was found that the concepts family, family members, relatives, social network, friends and others were used interchangeably across the different studies, often without further clarification of the concepts. Recent and detailed quantitative data necessary for a solid definition turned out to be missing, however. Considerations about family members and the broader social network were frequently found to play a role in why people made a request for EAS, postponed or withdrew it.

In all three ethnographic studies and several other qualitative studies, patients are described whose request for euthanasia or assisted suicide is motivated by a fear of the suffering, dependency, uncertainties or strain on caregivers they had witnessed previously surrounding the deathbed of partners, parents or siblings [ 9 , 34 , 35 , 36 , 37 , 38 ].

For instance, patients with cancer and AIDS expressed the wish to prevent the suffering they had witnessed at the deathbed of parents or partners by choosing EAS [ 9 , 35 ]. In-depth interviews with patients with dementia showed how instructions regarding euthanasia were made in advance following experiences with family members, most often parents, or others they had cared for who were afflicted with dementia [ 39 ].

In a parallel questionnaire-based study, any thoughts about end-of-life wishes, including EAS, were significantly related to family experiences with the disease, and not to clinical or demographic variables [ 40 ].

Similarly, members of the general public referred to situations of decay, pain and humiliation they had seen in family and friends who were afflicted with metastasized cancer or dementia, to explain their positive opinions regarding euthanasia and advance euthanasia directives [ 41 , 42 ]. In several studies, patients and their partner, children or siblings describe how the wish for EAS was part of a personal philosophy of life, developed together long before becoming ill [ 9 , 38 , 44 ].

In one family, both parents and children were members of the right-to-die association [ 9 ]. Some patients spoke explicitly about the goal to have a well-organized farewell and aftermath for the sake of their family members [ 9 , 38 ]. A single case was mentioned of an EAS request relating to a grave family secret [ 38 ].

They describe patients who wanted EAS as soon as they were no longer able to recognize children or partners, or could no longer enjoy their company due to illness-related symptoms [ 9 , 42 , 44 , 46 ]. In contrast, there were cases where patients enjoyed positive experiences with for example grandchildren, in conjunction with postponing or being ambivalent regarding their own request for EAS [ 9 , 34 , 37 ].

For some patients, concerns about family members not being able to bear EAS or not being ready for it were reasons to postpone a request for EAS or not to disclose it to their family members [ 9 , 36 , 38 ]. Euthanasia-requests relating to loss of a partner [ 42 ] and loneliness [ 34 ] were described as well. In several qualitative studies, nurses and physicians recount stories of euthanasia-requests related to dependency on the care of children or partners and the associated burden on them [ 9 , 35 , 47 ].

Financial burdens were only mentioned twice in relation to EAS in all included studies, by a patient without insurance who was worried about the financial consequences for his wife [ 38 ] and a young AIDS patient who said to prefer euthanasia above suicide because of his life-insurance [ 9 ].

She describes an year-old cancer patient who requested euthanasia because of unbearable suffering, meaninglessness, and the wish not to be a burden to her daughter. She cancelled it out of consideration for her daughter who was not ready for it yet, regretted the cancellation, but later on enjoyed the company of her granddaughter again.

In her comprehensive in-depth interview study on unbearable suffering in patients with an explicit request for euthanasia, Dees et al. In a prospective survey involving end-stage cancer patients in primary care, fear of future suffering and the feeling of being a burden, together with loss of autonomy and physical suffering, were reported more frequently in patients who suffered unbearably [ 48 ].

However, neither this study [ 49 ] nor a prospective survey among ALS patients [ 50 ] found a significant difference in the prevalence of those symptoms between patients with and without an explicit request for EAS.

This pertained both to patients with an underlying physical disorder and with a mental disorder. In one study involving psychiatrists who had cared for psychiatric patients with an explicit request for EAS, the most important reasons cited were depression, major problems in various aspects of life and loss of control [ 7 ].

In the study by Jansen et al. Both qualitative and quantitative studies show that once a patient has made a request for EAS to a physician, a process of deliberation, decision-making and finally performance starts in which family members seem to be thoroughly involved [ 7 , 9 , 11 , 34 , 35 , 36 , 38 , 42 , 44 , 61 , 62 , 63 , 64 ].

Some studies describe how friends [ 35 , 38 ], neighbors [ 11 ], or nurses [ 34 , 35 , 38 ] created a supportive social network during EAS decision-making and performance in cases where family was absent. In two qualitative studies, patients with psychiatric diseases are mentioned who explicitly refused any contact with family members about their request for EAS [ 7 , 64 ].

Recent quantitative studies have found slightly lower percentages of physicians who discuss the decision to perform EAS with family members [ 7 , 62 ], while Dutch physicians are still found to speak most frequently about end-of-life decisions with family members, compared to their counterparts in other European countries [ 67 ].

In qualitative studies, the actual performance of EAS is described as happening in the presence of partners, parents, siblings and sometimes friends at the bedside [ 9 , 34 , 35 , 36 , 38 , 44 , 64 , 68 ].

Verhoef et al. Another study described a single case of a patient who did not want anyone to be present at the bedside during the administration of EAS [ 42 ]. Ethnographies and other interview studies with patients and family members describe how patients asked their family members to consent to EAS [ 37 , 38 ], how euthanasia-declarations were drawn, signed and discussed collectively [ 9 , 34 , 35 , 37 , 38 , 65 ], and how alternatives and procedures for EAS were discussed among patient, family and physician [ 9 , 34 , 35 , 36 , 44 , 64 ].

In qualitative interviews with and observations of physicians, it is described how physicians test their impression regarding the voluntariness of the request and the unbearableness of the symptoms in repeated discussions with family members [ 35 , 38 ]. Only Dees et al. The care they provided ranged from zero a nephew to twenty-four hours a day husbands and wives. For instance, partners, children or siblings are described who informed the physician about a worsening of symptoms [ 9 , 34 , 38 ], signaled the right moment for the performance of euthanasia [ 38 , 44 ] or initiated the discussion about EAS on behalf of competent patients who suffered from a progression of the underlying physical disorder [ 9 ].

The describes the case of a sister who initiated the conversation about a euthanasia request with the physician, on behalf of her brother whose cognitive abilities were fluctuating due to brain metastases [ 34 ]. In an earlier stage of illness, the patient and his sister had already talked extensively about the possible scenarios of illness progression and the request for euthanasia, and the sister had been appointed as his representative.

In a study of EAS cases that the regional review committees disapproved of, single cases were described of family members who helped the physician administer lethal medication or who organized an appointment for a family member afflicted with dementia at the specialized End-of-Life clinic [ 69 ]. Case studies and ethnographies describe how EAS was planned together with family members, taking into account time for leave-taking, family members traveling from abroad, family holidays, birthdays or responsibilities at work [ 9 , 36 , 68 ].

This is echoed in interviews with family members and physicians, who explained that as long as the physical suffering was not too acute or severe, these kinds of family-related considerations were taken very seriously [ 47 ].

In contrast, Dees et al. Proxy-decision making came explicitly to the fore in studies about euthanasia for patients with dementia and euthanasia for children. According to the NHPs in this study, family members wanted to discuss the advance euthanasia directives most often with the purpose of discussing end-of-life policies in general.

From a mixed-method study and a qualitative interview study about advance euthanasia directives drawn up by patients with dementia, it emerged that family members were sometimes involved in writing, discussing or interpreting the advance directives [ 39 , 71 ].

However, the drafting of an advance euthanasia directive was most often initiated by patients themselves [ 71 ]. Some patients expected their families to act upon the euthanasia advanced directive at the right moment, even if that moment was not clearly specified [ 39 ]. Two studies found that advance euthanasia directives were rarely carried out for various reasons, such as nursing home policies [ 70 , 71 ], doubts about the presence of unbearable suffering or the applicability of the advance directive in that situation [ 71 ], and opinions of NHPs about the acceptability of euthanasia for patients with dementia or the validity of a request based on an advance directives [ 70 ].

The actual performance of physician assisted dying in children was rare according to a study of death certificates 2. Several qualitative studies describe how family members struggle with conflicting feelings during euthanasia decision-making. Furthermore, several studies describe family members who had been aware of their own exhaustion due to caregiver responsibilities during euthanasia decision-making [ 9 , 35 , 38 , 44 ].

For some it had been a reason to stay out of euthanasia decision-making, or to doubt their role in it [ 38 , 44 ]. For others, euthanasia was seen as a possibility to organize care and to have a fixed end point of care responsibilities [ 35 ]. In various other studies, healthcare professionals -- both physicians and others -- describe exhausted family members, emotionally burdened by the course of events at the deathbed [ 9 , 34 , 38 , 73 ].

Meanwhile, planning of EAS could cause relief in exhausted family members [ 9 ]. However, the activity of collectively picking a date was often described as very difficult and even as overwhelming or absurd [ 9 , 35 , 38 , 64 ]. Qualitative studies conducted in primary care describe how discussions about euthanasia were a positive experience for family members.

The discussion could foster mutual bonds between patient, family and physician, if there was clear communication and respect for all involved [ 35 , 64 ]. Family members were also found to struggle with acting upon a euthanasia advanced directive, which could cause disagreement about whether the state of unbearable suffering had been reached and about who should make the final decision to act upon it [ 39 , 71 ].

Lastly, a visit by a consulting physician could provoke different experiences as well, ranging from a positive experience because the consultation was seen as a safeguard in the procedure, to negative experiences relating for instance to a negative judgment about the request for EAS [ 75 , 76 ]. After euthanasia has been performed, positive experiences seem to prevail in bereaved family members, according to both the findings of qualitative and a limited number of quantitative studies [ 7 , 9 , 34 , 36 , 38 , 44 , 47 , 64 , 66 ].

In one study, a bereaved daughter and son-in-law directly related their positive experiences with the euthanasia-death of their mother to preferences for their own death in the future [ 38 ]. In line with these positive experiences, Swarte et al. In bereaved partners, family and friends of AIDS patients, no significant association was found between the occurrence of depression after a normal versus a euthanasia-death [ 74 ].

Nevertheless, complicated grief and negative experiences after euthanasia were described as well, relating to a hampered process preceding EAS [ 38 , 47 , 68 , 74 ] or to secrecy among close family members about EAS as cause of death [ 35 , 38 ]. In his mixed-method study with AIDS patients, Boom found how complicated grief can be due to the responsibility of deciding about the date for EAS, the speed of dying after the lethal injection extremely fast or prolonged , and the responsibility for administering lethal medication.

The latter aspect was mentioned in a case study as well [ 68 ]. This applies especially for GPs. At the same time, complexities and negative experiences with EAS for GPs and other physicians were found to relate to the involvement of family members as well. The pressure that family members exerted on the physician, disagreements about the process or the suffering, opposition, lack of open conversation, different expectations and the idea that euthanasia was an enforceable right were described as elements of a complex or negative EAS process [ 9 , 11 , 35 , 38 , 42 , 47 , 64 , 79 ].

Some consulting physicians had similar negative experiences relating to family pressure [ 65 , 76 ], and family-related complexities could be a reason for consultation with other GP advisors in palliative care [ 80 ]. However, the survey by Van Delden et al. From qualitative studies conducted among GPs, it emerged that many, although not all of them, considered it their task to take care of both patient and family members during euthanasia decision-making [ 7 , 9 , 11 , 35 , 38 , 44 , 47 , 64 , 81 ].

Similar themes were mentioned in recent interviews with psychiatrists who have experience with EAS [ 7 ]. On the other hand, some GPs and other physicians were described who only see taking care of their individual patient as their task [ 9 , 11 , 38 ]. Studies involving nurses showed that although a minority of nurses is actually involved in EAS decision-making, they often consider it their task to counsel both patient and family members and to provide aftercare for family members [ 34 , 83 , 84 ].

Both earlier and recent qualitative studies among GPs and psychiatrists describe how these physicians considered to forego euthanasia in cases where the family could not cope, where family was absent or if there was a family conflict, despite knowing that these considerations were not related to any legal criterion [ 7 , 11 , 12 , 35 ].

Diverging opinions among pediatricians on the extent to which parents should be involved in EAS decision-making for children were found in other studies as well [ 73 , 86 ]. Besides family agreement as additional criterion, a reluctance to consider EAS on social indications was found as a theme in both quantitative and qualitative studies, especially in studies with GPs. Another survey showed how only a minority of GPs would consider granting an EAS request without an underlying somatic or psychiatric disorder [ 89 ].

Similarly, qualitative studies described a GP who organized additional care to assure that a request did not originate from the feeling of being a burden [ 38 ], as well as GPs and other physicians who found it difficult to empathize with EAS requests based on dependency, loneliness and existential aspects [ 12 , 79 ]. Snijdewind et al. In addition, a recent study showed how the rejection of patients in the specialized End-of-Life clinic was significantly related to being single or without children, while granted requests were independently associated with having more than one child [ 92 ].

A study from based on death certificates found no association between marital status and refusal of EAS requests [ 93 ]. An earlier questionnaire-based study described more permissive attitudes among relatives compared to physicians regarding proxy-decision making for EAS for patients with dementia [ 95 ]. At the same time, opinions were divided about whether it was important for family members to be involved in EAS decision-making.

An earlier mixed-method study among the general public found instances of fear about bad intentions of family members and concerns about their influence on EAS decision-making [ 42 ]. The aim of this review was to explore how family members are involved in the Dutch practice of EAS according to existing empirical research, and to map out themes relevant for further research and discussion.

The results indicate that a request for EAS can originate from family-related considerations, that family members seem to fulfill demanding roles and responsibilities in EAS decision-making with varying experiences, and that Dutch physicians - especially GPs - seem to show sincere consideration for family members and the broader social context when deciding on a request for EAS.

The results of this review offer a new perspective on EAS decision-making in the Netherlands, which is typically framed in the patient-physician dyad. However, a triad model in which family members also have a position seems more appropriate to describe what goes on in clinical practice, as suggested previously by Snijdewind et al. Adopting such a patient-physician-family triad for EAS decision-making brings empirical and ethical questions to attention that have not been sufficiently addressed so far.

It is important to acknowledge the limitations of the explorative approach and qualitative method of synthesis used in this review. Due to the heterogeneity of study aims, methods and participants in the included studies, the generalizability of the results is limited. Also, it is particularly challenging to synthesize qualitative studies since the context may partly be lost in the process, while the context is essential for a correct interpretation of the results.

Besides, the context of several of the included studies may no longer be comparable to the present-day practice of EAS, which is described in more detail below. Nevertheless, this review raises themes and identifies problems that can serve as a starting point for further empirical and ethical inquiry. However, the number of studies with family members as participants was found to be limited 14 out of 66 studies , which may itself be considered a significant result.

There is no standardized registration of the people in the social networks of patients who request and receive EAS. For instance, physicians who perform EAS are not required to report this kind of information to the regional euthanasia review committees.

In this review, partners and children feature as the most closely involved significant others. However, the composition of families and social networks seems to be changing in the Netherlands, as is the amount of informal care that the state expects the social networks to provide. Therefore, there is a need for up-to-date quantitative data about the social networks surrounding patients who request and receive EAS in the Netherlands, including information about their caregiver responsibilities and burden.

This point has been raised by others as well [ 1 , 91 ]. Quantitative information about professional caregivers other than physicians who are involved in the care for patients and their families, especially in general practice, would be interesting as well. And still others might argue that family members have legitimate interests of their own and deserve protection in any legal decision process. However, proponents of physician-assisted suicide as a matter of patients' rights would not agree to giving any family members veto power over a patient's voluntary and informed choice.

After all, the issues are whether the patient has chosen freely and whether the patient is truly suffering; and the family members, especially if they have their own emotional problems or dysfunctions to deal with, may be singularly unhelpful in determining either how free was the patient's choice, or how badly the patient is suffering.

Their objections to the suicide may reflect their own emotional turmoil much more than any helpful facts about the patient's status. Moreover, if one grants some family members this veto power, precisely how far should it be extended within the family circle?

Should an estranged brother or niece who has not seen the patient for 20 years be allowed to derail an otherwise justifiable process? One compromise position favors requiring that immediate family members be informed without giving them power to control the final decision. If some sort of counseling process should precede any assistance with suicide, then it would seem appropriate to question very carefully any patient who has close family members whom he has not informed about his desire to die, or who has avoided discussing the matter with his family.

In particular family situations there may turn out to be very good reasons for this reluctance; but the reasons ought to be made clear before the counselor could approve the patient's decision process as optimally rational and informed.

Some members of the Michigan Commission on Death and Dying drafted a model statute for the regulation of physician-assisted suicide; the statute calls for encouraging but not requiring family notification and allowing the patient to have the final decision in instances where family members might object Michigan Commission, The Oregon referendum passed narrowly by the voters of that state in November has no requirement for family notification or consent.

Both proponents and opponents of physician-assisted suicide agree that when a patient asks this aid from a physician, the first response should be neither ready acquiescence nor moralistic condemnation, but rather a careful search for the sources of suffering which might be ameliorated by some means short of death.

Quill has suggested a useful typology of reasons why patients might ask for suicide assistance. In the typical case, he claims, a better alternative to assisted suicide will be found upon careful inquiry. Only in the very unusual case will no other means of relieving suffering be available and acceptable to the patient.

One of Quill's categories is requesting to die because of the emotional impact of family turmoil or dysfunction, in which case family counseling and not suicide assistance is obviously indicated. A discussion of this sort, however, tends to make certain assumptions that are natural to middle class patients with adequate health insurance, but which hardly reflects the reality of a large number of persons in the U. Some proponents of physician-assisted suicide assume a well-functioning and supportive family and a personal physician who has known the patient for a long time.

Upon a request for suicide, the physician can readily call upon skilled mental health professionals to assess the patient's competence. Finally, if problems are identified that can be ameliorated by other means, the relevant professionals are supposedly available. If better pain control is needed, then skilled hospice teams are presumed to be an option; if family dysfunction is identified, then family therapists could be called in; and so forth.

A thoughtful report by a New York state ethics panel New York Task Force, unanimously opposes the legalization of assisted suicide, because all of these assumptions are demonstrably untrue for a large number of especially vulnerable patients. They may lack finances or health insurance and so may be dependent upon community mental health clinics with long waiting lists for any psychological counseling and assessment. They may live alone and so be ineligible for home-care hospice services.

They may receive almost all of their medical care from emergency rooms or charity clinics and have no personal physician. The New York Task Force suggests, in effect, that a society which would wish to provide the option of legal physician-assisted suicide would first have to eliminate numerous inequities in the provision of medical and mental health services; otherwise the risks that vulnerable patients would be driven to requesting suicide for problems which, under better circumstances, could easily be ameliorated is simply too great.

A spokesperson for a community clinic in an inner-city Latino neighborhood stated in a public television program on euthanasia that it is ironic that the only "right to health care" that anyone has come offering his patients lately is a right to be killed and not a right to receive needed services.

Underlying the ethical and legal debates over physician-assisted suicide are a number of issues that focus upon the family. Some positions on assisted suicide rely upon assumptions regarding the psychodynamics of the request for suicide assistance, which can be properly evaluated only with more research in the future.

In the meantime, a patient requesting assistance with suicide from a physician should receive a sympathetic but searching evaluation to try to identify other ways to relieve suffering; and providers skilled in family assessment can be valuable contributors to that process. Rational suicide and the right to die: reality and myth. New England Journal of Medicine, , Michigan Commission on Death and Dying June Lansing, MI:.

A study from the Italian-speaking part of Switzerland found that all family members of those who received medical assistance in dying seemed generally unwilling to disclose either the type of death or their involvement in it 1. These relatives did not share the difficulties they faced; in many cases, the patients themselves asked them to keep the assisted suicide secret. These findings differ from the Dutch studies which found that medical assistance in dying brings openness in dialogue 4, 7.

This difference could be due to the Swiss-Italian cultural background. One cross-sectional study from the German-speaking part of Switzerland published in examined 85 family members or close friends who were present during medical assistance in dying 5. A higher prevalence of PTSD and depression was found in the study sample compared to the general Swiss population; however, the prevalence of complicated grief was comparable. This study did not include a control group who lost a loved one by natural death, so it is unclear if levels of PTSD, depression and anxiety would be similar in a matched control group 5.

Further research of the same sample found that inadequate social support and low levels of social acceptance of medical assistance in dying predicted PTSD severity and complicated grief Perceived general disapproval of medically assisted death was an important factor predicting PTSD Thus, non-disclosure of the manner of death and strong views expressed by the community and society concerning the end-of—life decisions may lead to increased levels of PTSD and complicated grief among family members of those who chose medical assistance in dying All searches were conducted on April 3, and results limited to English articles published from to present.

Reference lists of identified articles were also searched. The search yielded references from which ten studies were included. The responsibilities of being a family carer to a person with a terminal illness can be extraordinarily demanding. Rates of psychological distress among family carers have been reported as high as 40 per cent.

Indeed, family carers are often referred to as "hidden patients" with emotional and support needs that often exceed those of their terminally ill family member. Without suitable professional support many family carers feel isolated and overwhelmed by the many tasks and emotional implications of caring for a loved one with a life-threatening condition. In such circumstances, the promise of a painless and uncomplicated death via assisted suicide, must sometimes seem attractive.

Health Minister Jill Hennessy and Premier Daniel Andrews have spoken about their personal experiences with the deaths of family members. Credit: Jason South. If only it were true. The fact is, assisted suicide may simply add to the anxieties and pressures felt by families. While the specific role of family carers in the process of assisted suicide is relatively underexplored, some instances of post-traumatic distress disorder and depression in families who witness assisted suicide have been reported overseas.

We shouldn't think that Victoria's assisted suicide model is immune from similar unintended consequences.