Withholding/Withdrawing Life-Sustaining Treatment in a Multiethnic Critical Care Setting: An Ethnographic Study

Abstract

Background:

Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.

Objective:

To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.

Design:

Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).

Setting/Subjects:

Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).

Results:

During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.

Conclusions:

Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.

Introduction

The laws regarding decisions to withhold/withdraw life-sustaining treatments (WHWD LST) vary between countries. In Belgium, the country where this study was conducted, decisions to WHWD LST may be made with or without the patient's explicit request.¹ Making such decisions at the request of competent patients is completely legal. Doctors who ignore such requests violate the laws that support patients' self-determination, even if doctors think that further treatment would still help the patient. Making decisions to WHWD LST without patients' explicit request is allowed when the treatment is considered medically inappropriate. The Belgian law even forbids the prolongation of medically inappropriate treatment. In such situations, physicians have major responsibility in decision making. Making decisions to WHWD LST in a situation where treatment is still possible and without patients' explicit request is considered as an omission offence. When patients are no longer competent, patients' representatives must act in the best interest of patients. Physicians have the legal right to deviate from the desires of the representatives after multidisciplinary deliberation, if representatives insist upon medically inappropriate treatment. Belgian law regarding decisions to WHWD LST is underpinned by important medical–ethical principles, such as respect for patients' autonomy, doing good for patients, avoiding intentional harm, and being truthful and faithful.^2,3

During critical care, many patients die after a decision to WHWD LST.^4,5 Such decisions must be discussed regularly and on time with patients and relatives and are best made in dialogue with colleague health care workers.⁶ Discussions are often time-consuming and need sufficient patient involvement.⁵ If patients are unable to participate, and choices can only be discussed with patients' relatives, decision making can be jeopardized by relatives' difficulties in understanding information and distress.^7–9 Profound communication about decisions to WHWD LST with patients/families can further be impeded in acute critical situations (intensive care units [ICUs]) where health care professionals have to make decisions quickly, affected by their many job demands, medical uncertainty, and curative orientation.^10–13 Furthermore, as such decisions are influenced by culture and religion, decision making can become even more complex with ethnic minorities due to, for example, beliefs in God's sovereign power over life–death.¹⁴ In this article, we investigate making decisions to WHWD LST with patients from ethnic minority groups and families in the ICU, including difficulties encountered by health care professionals and strategies they use to deal with difficulties. Such knowledge is key for developing best practices regarding end-of-life decision making in a culturally diverse critical care context.

Methods

An ethnographic research design was used, enabling the researcher to immerse herself in the care field and explore our research topic in depth for long time on the ward itself by observing and interacting with people involved. This design is inspired by the social constructionist and interpretative approach.¹⁵ Ethnographic fieldwork was performed for 10 months within a 3.8-year time frame (January 2014 and October 2017).

Setting and sampling

Our research field consisted of one ICU of a multiethnic urban hospital in Belgium. Purposeful sampling was applied, and patients and relatives were included if the birth place of patients/at least one of their legal parents was outside Belgium, if at least one of their relatives was proficient in Dutch/French/English, and if patients were at least 18 years old. One doctor and three nurses facilitated researcher's access to patients and families who met with inclusion criteria. Selected patients, relatives, and all ICUs staff members were studied during patient's entire ICU stay.

Participants

We selected 18 patients and accompanying relatives. They were originally from Southern Europe, Turkey, North Africa, and Central Africa, that is, regions of origin of Belgium's large ethnic minority groups.¹⁶ No patients and relatives refused to participate. ICUs staff members comprised 80 nurses and 12 doctors. Most of them were members of the ethnic majority group. Eight staff members (one doctor and seven nurses) refused to participate.

Data collection

Data were collected through observations on the ward,¹⁷ in-depth interviews with health care professionals, and reading patients' medical records.

Observations included observation of 695 interactions between research participants, 880 informal conversations with research participants, and attendance at 268 staff meetings. The researcher made short notes in the ICU. Afterward, she applied a “thick description” and emended these notes into long descriptive field notes. Private in-depth interviews were held with 27 nurses and 8 doctors who were involved in care for our included patients in the ICU and audio-recorded (see Appendix A1: topic list interviews). To not increase pressure on patients and relatives, only informal conversations were held with them.

Data analysis

In-depth interviews were transcribed, and thematic analysis was applied to all data, supported by NVIVO 8. This analysis encompassed (re)reading of data and assignation of themes. Core themes were detected in different data sources and within each theme, and different subthemes were identified. Themes and subthemes were refined and linkages between different themes were studied.

Reliability was strengthened by the first author analyzing data and two co-authors reviewing the analysis. The research process was also regularly reflected on by members of authors' academic research group. Moreover, the study was also read by a physician who is staff member of the studied team. Moreover, findings were discussed with nurses who had participated in this study during a conference.

Ethics

Study approval was received from authors' university's ethics committee (reference 2013/371, date approval: December 17, 2013). Privacy of research participants and confidentiality of data were maintained. Research participants were requested to give written consent to study participation after presentation of the study. If patients lacked capacity to give consent, consent was sought from legal representatives.

Results

Patients could not express themselves or could only do so minimally. More information about patients' characteristics is presented in Table 1. Thirty-nine percent of ICUs staff members were men, 61% women. Forty-two percent were younger than 45 years.

Table 1.

Patients' Characteristics

Patient number	Gender	Country of origin	Age, years	Religion	Medical condition
1	F	Turkey	49	Muslim	Complicated pneumonia
2	F	Morocco	81	Muslim	Heart valve dysfunction
3	F	Morocco	61	Muslim	Complicated pneumonia
4	M	Morocco	52	Muslim	Complicated pneumonia
5	M	Morocco	82	Muslim	Chronic heartfailure and pneumonia
6	M	Algeria	51	Muslim	Kidney disfunction
7	M	Congo	68	Christian	Brain hemorrhage
8	M	Turkey	70	Muslim	Stomach cancer
9	F	Congo	48	Christian	Brain hemorrhage
10	M	Portugal	50	Muslim	Neurotrauma
11	F	Morocco	61	Muslim	Acute pulmonary edema and cardiac arrest
12	M	Tunisia	64	Muslim	Complicated pneumonia
13	M	Congo	41	Christian	Neurotrauma
14	F	Congo	73	Christian	Chronic obstructive pulmonary disease and heartfailure
15	M	Tunisia	66	Muslim	Heart attack and pneumonia
16	M	Morocco	45	Muslim	Neurotrauma
17	M	Greece	70	Christian	Liver cirrhosis
18	M	Turkey	52	Muslim	Brain hemorrhage

F, female; M, male.

Decisions to WHWD LST were made for 9 of 18 patients. Decision making was strongly influenced by physicians. The role of patients and nurses was minor, whereas families' input was more noticeable. Decision making was complicated by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different solutions were used by physicians to deal with conflicts, often mirroring their status as central decision maker (e.g., convincing families to make a decision to WHWD LST) and also sometimes their inability to overcome differing viewpoints (e.g., foregoing decision making). (A summary of the key findings is presented in Table 2.)

Table 2.

Withholding/Withdrawing Life-Sustaining Treatment in a Multiethnic Intensive Care Unit

Role of the different parties

• Physicians had a very central role in decision making

• Contribution of patients and nurses was limited

• Families' input was more noticeable

Difficulties for health care professionals during decision making with patients from ethnic minority groups

Decision making was hampered by communication difficulties between:

(1) Staff and relative(s)

(2) Opposing relatives

(3) Patient and relative(s)

Strategies used by health care professionals to deal with difficulties

• Physicians building trust with relatives

• Physicians convincing relatives to take a decision to withhold or withdraw life-sustaining treatment

• Physicians stressing their central role in decision making

• Physicians foregoing decision making

• Nurses trying to initiate decision making

• Physicians taking a decision to withdraw life-sustaining treatment without explicitly informing the patient and/or family

Decision-making process

Patients themselves were often not involved in decision making as they were usually unconscious. Moreover, conscious patients were easily perceived by doctors as incompetent to participate (due to, e.g., illness and language barriers). Furthermore, patients often lacked an advance directive. A decision to WHWD LST was usually communicated to relatives by physicians, often depending on relatives' understanding of patient's situation. Physicians did not actively integrate nurses' views into the decision making. Moreover, nurses were not included in physicians' formal discussions with other colleagues, patients, and relatives.

Communication difficulties

First, decision making was often impeded by families who were against making decisions to WHWD LST. Families felt that patients should receive maximal curative therapy until death and that it is inappropriate to talk about patients' end of life and intervene in this domain, which was often legitimized by religious norms.

Doctor: They (ethnic minorities) aren't stupid of course, they know people die—but a lot of them struggle with the fact that, look, that patient is dying because something is happening to them. And then religion gets involved and all that kind of thing, erm, but they really struggle with the fact that, you know, if we turn off the ventilator they are going to die. Then they say yes, but ‘we want him to die naturally’. (Interview with Doctor 1)

Second, it was difficult for doctors to find support for making decisions to WHWD LST from the whole family. Relatives who discussed the patient's situation with doctors more easily saw the relevance of making such decisions, whereas other relatives often remained opposed to it.

Son: Yes, but it's not really a decision you're making with us then, you're just telling us what the situation is.

Doctor: Yes, yes, yes, yes … Why not, er, why wouldn't I ask you? Because …

Son: Because there's nothing to find out, there's no alternative.

Doctor: There's no alternative.

Son: Yes I understand that.

[…]

Doctor: But I'm glad you understand that the situation is very difficult.

Son: Yes, yes, yes, I understand, but it's difficult to get the others to understand […]. It's also a different country, a different culture, a different thing, so we always ask if there is anything else to be done, and they always tell me ‘Oh, no, because …’

(Field note, Conversation between son of patient and Doctor 2, case patient 7)

Third, decision making was challenged when staff received support from patients to withdraw therapy, against the wishes of one/more of their relatives.

Nurse: But she (the patient) had a cannula, so she couldn't really, well, she had real difficulty communicating. (…) It was a hopeless situation, she'd been here for about three months and she had already said several times that she'd had enough. She was in her eighties too. […] But I think that it is exactly at a time like that that you, as a relative, that you really don't want it to happen […]. I think the granddaughter in particular, er, when she was trying to talk her (grand)mother round and, well, they came here to visit and the patient just kept crying and crying and crying. And, you know, she was in a lot of pain as well. (Interview with nurse 1)

Staff's strategies to deal with communication difficulties

Trust building

When physicians felt opposition from relatives against making decisions to WHWD LST, some physicians tried to (re)gain their trust by holding conversations with them about patient's situation and bad prognosis. Misunderstandings were clarified and often western values (e.g., honesty) were emphasized during argumentation. Sometimes physicians directly asked relatives to put more trust in them.

Doctor: Sometimes I say so to them as well, I say ‘You do need to trust me’. I say, er, ‘You've got no choice.’

(Interview with Doctor 1)

Some doctors also integrated another health care professional with whom relatives had a good bond. Sporadically, physicians talked to influential religious figures from patient's community or sought help from hospital's chaplain.

Convincing

Conversations with families aimed at reducing disagreement were often characterized by convincing families, sometimes done in an authoritarian manner. Physicians tried to convince relatives to accept a decision to WHWD LST, for specific medical reasons, because of the absence of curative options, ending of patient's suffering, preventing of a poor life quality, and ensuring basic care. Physicians' efforts to fully explore patients'/families' specific perspectives were limited.

At the entrance to the ward, the patient's son asks the physician whether the doctors are just going to stop treating the patient, while the other relatives are standing around the patient's bed inside the ward. So they cannot hear the conversation between the son and the doctor.

Doctor: It will happen at the point when there is no treatment we can give that will work and that's when it happens, erm, it's not that I'm going to limit care or make limitations, it's simply that there's nothing more I ‘can’ do … And we also have to consider that there is a patient suffering in a bed, so if it really does happen, I'll phone you and say to you: ‘There's nothing more I can do.’

Son: Yes, but it's not really a decision you're making with us then, you're just telling us what the situation is.

Doctor: Yes, yes, yes, yes … Why not, er, why wouldn't I ask you? Because …

Son: Because there's nothing to find out, there's no alternative.

Doctor: There's no alternative.

(Field note, Conversation between Doctor 2 and patient's son, case patient 7)

Stressing physicians' central role in decision making

Some doctors made their central role in decision making more clear toward relatives either in an indirect manner or through direct enforcement, for example, by pointing to their right/duty as doctor to make a decision to WHWD LST in patient's current hopeless situation.

Doctor: We will not continue to treat him in this way.

Son: And what will you do then?

Doctor: We will take him off the machines.

Son: So if there is no improvement you will turn off the machines. (…)

Doctor: It is not up to you to decide. This is a medical decision.

Son: What about the family then? The only thing you do is talk to the family? [Doctor gives no answer to these two questions] (…)

Doctor: It doesn't mean ‘kill’. Stopping the machines is not euthanasia: We are not going to give him any medication that will lead to his death. We are letting his body decide for itself. This is a medical decision. If someone has been in intensive care for three weeks and the treatment isn't helping, we have the right to stop the machines.

(Field note, Conversation between Doctor 2 and patient's son, case patient 7)

Health care professionals often took it for granted that doctors were prime decision makers as doctors were considered medical experts and families' sociocultural background was often seen as impeding effective decision making.

Nurse: ‘Sometimes it's actually best that doctors make a decision instead of the family. It's difficult for them to say goodbye to their loved ones.’ I ask: ‘Why is it difficult for them to say goodbye?’ Another nurse replies: ‘It's because of the culture. ‘Muslims more often want to continue treatment, they can't let go … And we Belgians don't want to do that to our relatives.’ (Field note, informal conversation with nurses, case patient 8)

Foregoing decision making

Some doctors followed families' wishes not to WHWD LST, sometimes contrary to their own and patients' opinions, and temporarily delayed decision making.

Nurse: That lady didn't speak a word of French, not a word of Dutch. (…) When she was unrestrained she pulled at everything she could, and she really meant it, she'd also made it clear, meaning ‘No, I don't want it anymore! (…)’, and so we had that lady, because the family wouldn't let us, we couldn't stop. (…) And we couldn't communicate with the lady, unless, you know, not directly, because she didn't speak. (…) She couldn't write either. (…) Although we all knew that she had said separately to each one of us ‘No, no, no, no more!’ And we discussed that with the family. But the family put their foot down. It wasn't up for discussion. (…) So, yes, then we ended up restraining the lady, to stop her from pulling everything out (…).

Researcher: And you think that she was still competent to decide? That she understood what was going on?

Nurse: The lady? I think she did.

(Interview with nurse 2)

The decision to forego decision making was sometimes made in deference to families' ethno-cultural backgrounds. This was sometimes considered “a doctor's plight” and could potentially precipitate moral distress among physicians.

Doctor: (…) Sometimes you feel that you just can't bring it up.

Interviewer: Right.

Doctor: That they don't want you to. And so, erm … yes, sometimes it really is difficult. And then you keep going and that is really difficult, because the main source of depression in nurses and doctors is, is therapeutic stubbornness. With Jewish people for example, life for life. It doesn't matter how it ends. And then you have to be able to respect that. (…) It's very difficult at first, for doctors too, because then, then you have the feeling you're not doing the right thing anymore, but you do learn to, to deal with it.

(Interview with Doctor 3)

Foregoing decision making gave doctors the opportunity to invest more in communication with families and gave relatives more time to adjust to patients' bad prognosis.

Nurse: At last she (relative) has realised the patient isn't going to get any better. We can't save her, we can't cure her. And she has had enough herself.’ (…)

Researcher: Yes, but did people actually talk to the family then, or …?

Nurse: Yes.

Researcher: And then they saw how things stood …?

Nurse: Yes but it did take weeks to get to that point.

Researcher: Whereas the patient had been indicating for some time that she wanted to stop.

(Interview with nurse 1)

It also increased the chance that patients would die without having to make a decision to WHWD LST.

Doctor tells me: ‘Next week we are going to discuss with the family whether we can stop the machines, but it's possible that his heart might just stop.’ Then the doctor says to the nurses: ‘Next meeting is on Monday afternoon if he lasts till then, I said (to the family). Inflammation worsens, antibiotics change, poor lungs, poor heart. But I hope something happens to him before they have to decide to turn off the machines, because the woman isn't ready for it yet, is she. That saves us the conversation about turning off the machines. I hope his heart will fail before Monday.’ (Field note, case patient 12)

Furthermore, some doctors' fear of complaints and prosecution by relatives also contributed to foregoing decision making.

Doctor: (…) So you're a bit scared they'll say ‘you're not doing enough’. So there's a bit of a worry that they might press charges too.

Interviewer: Has it ever happened that the family has pressed charges?

Doctor: Erm, yes, yes, yes, but not with, it was more with an, erm (she names the patient), a North African. And he had had a serious heart attack, he had had a balloon pump and we ended up taking out the balloon pump but there was no more heart function after two weeks, and then we decided to stop and ultimately he died. And then there was a complaint.

[…]

Interviewer: And how did it end?

Doctor: (…) It hasn't been resolved yet.

[…]

Interviewer: Wow. And how do you yourself feel about, about legal proceedings?

Doctor: Well it's certainly no fun, because you feel like they're going to try and prove you did something wrong, when you tried to do your best for the patient.

(Interview with Doctor 4)

Sometimes continued resistance of relatives even resulted in a doctor's final decision to forego decision making.

Doctor: A Moroccan lad (…) I had said at the time, ‘Look, mate, it's hopeless.’ And in the end, he was breathing so we said we'd do a tracheotomy, and (…), we'll discharge him from the intensive care unit (…) We're keeping him alive but actually we know it's pointless (…) The brother, about six months later he was here for his in-laws. And afterwards he (…) (said): ‘My brother was there (on another ward in hospital) for another five months, in the end. (…) You were completely right, actually.’ (Interview with Doctor 1).

Foregoing decision making contributed to stress among some nurses. They felt that this practice endangered patients' dignity, quality of life, and autonomy.

Nurse: (It is) difficult to, to, how do I put it, to put the patient's culture before their comfort and humanity. I find it difficult and if the doctor does it, I have trouble accepting that decision.

(Interview with nurse 2)

Nurse: But I think that it is exactly at a time like that that you, as a relative, that you really don't want it to happen, that er, erm, that you have been backed into a bit of a corner, haven't you.

Researcher: So you do carry on for a while?

Nurse: Yes.

Researcher: And how do you feel about that yourself?

Nurse: I found it really difficult. Erm, yes, I felt like, well, ultimately the woman's (patient's) husband was there too, and he did agree (to stop the treatment). He is her legal representative at that point. So I think, I thought and I still think, that they should have listened to what the patient wanted more quickly! (…) It was inhuman that that lady was kept alive for several weeks longer.

(Interview with nurse 1)

Moreover, some nurses argued that foregoing decision making created false hopes of cure among relatives, was expensive and endangered care for other patients.

Nurse: The patient was really as good as dead (…) the family probably didn't realise it yet. And then you're running around doing a million things at once, and it's all a mess, everything goes from bad to worse. And we messed around for another two days. The patient already had livor mortis. But no, we kept going. Although I sometimes feel much too much effort goes into it (…) And then they come in here, they don't understand a word of what I'm saying because they only speak Berber (…) And then you set up 25 machines next to them. It costs a huge amount of money (…) (Interview with nurse 2)

Nurses trying to initiate decision making

Some nurses frequently thought that decision making was postponed for too long, based on their day-to-day care for the patients as well as requests they received from patients to stop curative therapy, and consequently, they tried to encourage doctors to make a decision to WHWD LST.

A nurse said the following about the patient to the doctor: ‘He is apathetic. He doesn't want to open his eyes any more. What are we doing here? I feel like we're torturing him.’ (Field note, case patient 8)

However, doctors did not usually follow nurses' opinions as they considered themselves medical experts/prime decision makers, resulting in powerlessness and indifference among nurses.

Researcher: And suppose you say to one of the doctors, ‘Look, I don't think there's much more we can do for this patient.’ Do they listen to you?

Nurse: Not always, no, no.

Researcher: Yes. And how do you feel about that?

Nurse: As I get older and older, worse and worse (…) I've got more of a feeling of, er, not letting it get to you. I mean that you become more indifferent. You do say it, whatever, but well, you just keep going.

(Interview with nurse 3)

Other nurses tried to convince families of the senselessness of continuing therapy, often in vain. This sometimes increased family–staff tensions.

Nurse: (…) and the family comes, and they get annoyed with you if you dare to say ‘Come on, it's enough now. Because the problem is this and this and that. And we can't fix that!’. (Interview with nurse 2)

Some nurses did not interfere in decision making as they perceived themselves as lacking decision-making power.

Nurse: To be honest it happens a lot, that some people thought we had gone too far.

Researcher: Nurses, you mean?

Nurse: Well, yes, that the doctor was going too far actually, but we were the ones who carried it out. (…) You see, as nurses we're never allowed to make the decision that we're going to stop. It's the doctors who, er, decide that, isn't it. So, erm, yes, we just carry out their orders. (Interview with nurse 4)

Consequently, these nurses minimally acknowledged or neglected patients' requests or asked patients to stop asking them to withdraw curative treatment, increasing stress among nurses.

Nurse: Sometimes the whole nursing team has just completely had it. We say, ‘(…) I don't want to keep treating that patient.’ (…) We had one like that once, as soon as he saw you he'd start saying ‘kill me, kill me, stop it, I don't want this anymore’. (…) And then I said to him, ‘Stop that. I can't decide that for you. I'm not allowed to. If I do that, I'll go to prison.’ (Interview with nurse 5)

Withdrawing LST without explicitly informing the patient and/or family

As a last resort, physicians sometimes withdrew LST without explicitly informing the patient and/or family. Decisions were then carried out either when relatives were present through visual misleading or when relatives were absent.

Nurse: Sometimes too there are people who are on, er, powerful inotropic drugs, and they get hooked up to a drip with ordinary water. (…) With a, with the same labelling and everything, to er, well, to mislead the family a bit actually.

Interviewer: Right, so what do you mean exactly by a drip with ordinary water …?

Nurse: Well, it's purely physiological, there are no more active drugs in it. (…) So say we are giving drugs to help the patient's blood pressure, we change that drip to an ordinary one, so that they don't get any, so the family think they are still getting medicine for their blood pressure—but in fact, er, there's nothing in the drip. (…) So in fact the patient, just, er, fades away.

(Interview with nurse 3)

When explaining to families, patients' sudden quick decline and death was ascribed to patients themselves or “nature.”

Doctor: I phone and I say, ‘Look, he had died suddenly, and resuscitation didn't, we weren't able to resuscitate him.’ Although in fact you know you are lying. You didn't even try to resuscitate him.

(Interview with Doctor 1).

However, sometimes when physicians and patients' representative(s) had a good relationship, representative(s) were informed of the decision after it had been carried out. Noninvolvement of patients in decision making was justified by physicians by their perceived unconscious state, whereas they were sometimes regarded as conscious by their relatives during decision making. Sometimes the dying process was hastened, which was done off the record.

Doctor: And if we do that (make a decision to withdraw LST) with a patient when the family isn't there (…) then, er … well then er … then you tend to use … Then you usually use euthanasia drugs.

Interviewer: Yes. And afterwards, I mean if you have been in contact with these difficult families who don't want you to stop treatment …

Doctor: And then they suddenly find out the patient has died?

Interviewer: Yes. What do you say has happened when you talk to the family?

Doctor: That the patient's heart stopped and I tried to resuscitate him. Usually you don't need to explain that very much at all (…) Because you've already gone through a whole process with these people where you insist on the same thing every time, look, it's over (…) And the strange thing is, usually, you hardly ever really get questions like ‘So what actually happened, then?’ (Interview with Doctor 1)

Although doctors did not like to make decisions without explicitly informing the patient and/or family, it was legitimized by them by the fact that it would end intensive suffering in patients and relatives and provoke a quick death, considered by physicians as a good death.

Doctor: Erm, I absolutely hate it, when people are dying for days (…) And it doesn't help the families (…) We've all got that romantic image of, you know, taking your dad by the hand (…) and says ‘I love you all’ as his last words (…), and then he dies. Reality isn't like that. (Interview with Doctor 1).

Furthermore, this practice was done to avoid intercultural conflicts with relatives and reduce the financial costs of treatment. It was considered to be done worldwide.

Doctor: Far more in Muslim families or with Africans than with, er, ordinary Belgians (…) er, you will have to (resort to) tricks like that (…). And it's not nice. (…) But if they come here afterwards and they're all, you know ‘phew’ (sound expressing relief), you know you have made the right decision. (…) Sometimes we're shaking in our shoes, thinking ‘shit, the family will be here in a moment, they're going to make a scene’ and then the families say, ‘Thank you for everything you have done, doctor,’ etc. ‘It wasn't easy, but we're glad he died by himself (…) No, then they have the feeling that he has died, that he's died naturally (…) Allah or Mohammed or whoever it is will be perfectly happy (…) And I'm certain that this practice is applied in any hospital you name anywhere in the world. (Interview with Doctor 1)

Discussion

Main findings of the study

In this ethnographic study, we investigated making decisions to WHWD LST with patients from ethnic minority groups and relatives in a multiethnic ICU in Belgium. We found that these decisions were primarily made by physicians. Patients' and nurses' role in decision making was limited, whereas families' input was more outspoken. Decision making was often hampered by communication difficulties between staff and relative(s), between relatives, and between patient and relative(s). Different approaches were used by physicians to overcome difficulties. Generally, doctors tried to control decision making, for example, by convincing families to make a decision to WHWD LST. Sometimes, physicians felt unable to align families' wishes regarding decision making with their own, which was reflected in, for example, physicians foregoing decision making contrary to their own opinion. In general, decision making with ethnic minorities did not go smoothly and had negative implications, for example, carrying out ethically concerning practices and endangering patients' rights and quality palliative care.

Strengths and limitations

Although there is a body of research on end-of-life decisions in critical medical situations, studies focusing on decisions to WHWD LST are less frequent.^10,18 Moreover, none of these studies focus on WHWD LST in relation to ethnic minorities and none use anthropological techniques. However, anthropological designs allow deep knowledge of complex and sensitive themes. Our long-term observations increased trust toward the researcher and made participants often act naturally during observations. Moreover, combining observations with interviews made it possible to differentiate between participants' actual speech/behavior and their proclaimed speech/behavior. The researcher might have had an impact on the field and findings as she herself has a non-Belgian ethnic background, which enabled her to gain a lot of trust from ethnic minorities. Moreover, the fact that the researcher has no professional background in critical care made staff communicate with her in a transparent manner about procedures. A possible limitation of this study is its single field character and small sample size, which makes it difficult to generalize our findings to other ICUs. However, findings are also of relevance for other ICUs and can foster debate about end-of-life decision making during multiethnic critical care.

What this study adds

Providing culturally congruent end-of-life care and collaboration between health care professionals, patients from ethnic minority groups, and their relatives in difficult end-of-life decision making in a critical care setting is challenging. It is widely acknowledged that physicians hold central responsibility for decisions to WHWD LST and that such decisions best be made in close consultation with patients and relatives and after thorough deliberation with other health care workers.^5,6,19–22 However, our study showed that this was seldom the case in our studied ICU with regard to patients and relatives from ethnic minority groups. Moreover, shared decision making, involving other health care workers besides physicians, for example, nurses, was very rare. Physicians are best placed, given their expertise, to determine what is still medically effective treatment and what is not. Physicians can never be obliged to continue a therapy when they consider therapy to be ineffective according to current medical knowledge. The (Belgian) law prohibits the continuation of medically inappropriate therapy.²³ Probably, this is the main reason why physicians want the decision to be made, preferably with, but possibly also without others' explicit consent. However, it does not relieve them of their obligation to make decisions as carefully as possible.

Observed decisional conflicts were also found in studies on end-of-life decision making with the ethnic majority group.^24,25 However, disagreement in our culturally diverse setting seemed to be more explicit and difficult to overcome due to factors related to patients' ethnic backgrounds, for example, strict religious norms and linguistic barriers. Also, the lack of knowledge on end-of-life issues in foreign cultures among some health care professionals and ethno-religious discrimination and prejudice, which is quite worrying in today's multicultural society, impeded effective decision making. Discrimination and prejudices were often based on ignorance, lack of communication, and structural constraints. Ethnic prejudices were sometimes used to legitimize physicians' central position in decision making. Moreover, prejudices discouraged some staff members to fully explore patients'/families' perspectives. Furthermore, adequate policy measures to deal with difficulties were lacking, for example, no formal integration of other professionals, such as nurses or professional interpreters, in decision making.

Patients and relatives were not actively/explicitly involved in decision making. However, certain physicians were very concerned about relatives' viewpoints and well-being. Thereby, in some cases, decision making was co-shaped by relatives to a certain extent. Unfortunately, this resulted in ethically and legally concerning practices, such as physicians not making a decision to WHWD LST against their own opinion, withdrawing LST without explicitly informing the family, deception, and hastening the dying process. These practices highlight doctors' inability in aligning differing viewpoints.

It is known that patients are more likely to express their wishes to nurses who give them day-to-day care, which also came to the fore in our study, and that nurses can be effective in judging which patients would die despite continuing treatment.^26,27 However, doctors often did not take into account nurses' perspectives, confirming earlier studies, and nurses' efforts to convince families were often not effective.^28,29 This contributed to powerlessness and moral distress among nurses.

Implications for practice and research

In a multiethnic critical care, context decisions to WHWD LST should be made with cultural sensitivity and involvement tailored to patients and relatives and in close consultation with other health care workers and services (e.g., nurses, palliative care specialists, psychologists, intercultural mediation, and interpreting services). Staff and students should receive training to develop their knowledge, skills, and attitudes regarding culturally appropriate end-of-life communication and decision making (e.g., through role plays or discussions about potentially stressful real-life cases and ethnic prejudices). Furthermore, they should be trained in how to cooperate with other disciplines/services and how to take care of their own mental health. Also, policy measures should be implemented allowing collaborative communication between health care professionals, patients and families, and among health care professionals. They may include agreements about collaboration between the critical care team and interpreting services and involvement of nurses in end-of-life communication and decision making. Moreover, educating ethnic minorities about end-of-life decision making (e.g., advanced care planning) both within and outside the ICU is valuable. Finally, the ethically concerning practices found in this study highlight the need for debate about end-of-life decision making in a multiethnic critical care context. Further (evidence-based) studies are required to test the impact of these proposed measures in a multiethnic critical care setting.

Conclusions

Making decisions to WHWD LST in a multiethnic critic care context has a number of specific challenges, such as how to take ethnic factors into account and how to correctly deal with differing viewpoints (e.g., relatives vs. staff). To effectively deal with such challenges, decision making should happen in culturally sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with other health care workers/services.

Footnotes

Acknowledgments

We thank the staff, patients, and families for their participation in our study and the members of our project group for their support and advice.

Funding Information

This study was funded by a research grant from the Fonds Wetenschappelijk Onderzoek-Vlaanderen (GOA3312N).

Author Disclosure Statement

No competing financial interests exist.

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