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Table 3 Findings relating to perspectives on end-of-life care and decision making

From: Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review

Study

Hope for cure and faith in Allah

Perspectives regarding end-of-life decisions: euthanasia or hastening death / withdrawing or withholding life-prolonging treatments/continuing to offer food and artificial nutrition

Involvement in end-of-life care or decision making

Findings concerning Turkish patients

 

(Akpinar et al., 2009) [27]

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40% of Turkish nurses found withdrawing life-prolonging treatments justified when no medical benefit; 81% preferred continuing treatment for a dying child (50% until brain death), 19% preferred palliative care. In case a baby would survive with physical or mental impairment 41% left decision to family, if progressive irreversible illness 65% found family should decide.

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68% agreed that artificial nutrition should always be continued.

(Balseven Odabasi and Ornek Buken, 2009) [31]

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Elderly patients accepted life-prolonging proposals of physicians. Even when patients wanted to die, relatives wanted them to live.

Clinicians should accord a larger role to patients in end-of-life decisions. Discussing medical ethical issues openly is not easy in Turkey, leaving physicians alone in decision making.

Physicians need training to handle communication about reanimating or passive euthanasia.

(Beji et al., 2005) [32]

After learning diagnosis 87% of patients with gynaecological cancer wanted survival and 50% recovery. If treatment should fail 75% would struggle, 27% would trust in God.

Abstaining from life-prolonging treatments only in patients suffering from bad family relations, pain or depression (37%), 63% wanted to survive. If treatment was to fail, 63% would ask for life prolongation, 36.8% would refuse that.

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(Celik et al., 2009) [38]

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82% of nurses provided an environment suitable for family to say goodbye to deceased patient, 5% allowed family to help care for deceased patient. Nurses did not apply special cultural or spiritual activities.

(Cobanoglu and Algier, 2004) [40]

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Withdrawing or withholding life-prolonging treatments was problematic for 48% of physicians and 46% of nurses. Physicians found withdrawing more difficult than not initiating treatment. Nurses felt uncertainty in absence of written DNR orders.

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(Cohen et al., 2006) [41]

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Acceptance of euthanasia is low in Turkey. Weak religious belief is most closely associated with higher acceptance of euthanasia, as well asyoung age, being from non-manual social class, higher education, belief in national traditions and history.

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(Erer et al., 2008) [49]

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87% of cancer patients declared that knowing diagnosis is a patients’ right; 92% found physician should inform them about disease and choices of treatment, but 77% regarded it to be an obligation for physician to provide this information. 43% agreed that patients could refuse treatment. 79% wanted to take part in decisions.

(Ersoy and Gundogmus, 2003) [54]

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84% of physicians would prolong life of a patient who had stated he did not want to live with aid of artificial respiration devices, but if his wife wanted him to live, only 13% would respect patient’s wishes.

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(Ilkilic, 2008) [56]

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In case of a relative who cannot live without mechanical support, Turkish parents wished to prolong life as long as possible, referring to religious duties. German physicians proposed stopping care when a situation is medically hopeless.

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(Iyilikci et al., 2004) [57]

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58% of anaesthesiologists would continue prolonging treatment when family wanted cessation, 85% would continue life support when family wanted continuation, 68% would continue minimal support in case of no likelihood of recovery.

66% of Turkish anaesthesiologists had given DNR orders, 14% discussed DNR with family, 1% with patient, 83% with colleagues and 2% with Ethics Committee. 10% preferred doctors to decide, 31% preferred to decide with patient, relatives and responsible physician, 58% preferred consensus between hospital administrators, Ethics Committee, patient, relatives and physician.

(Karadeniz et al., 2008) [58]

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28% of health professionals found life support should be decreased when patient wanted euthanasia, 35% rejected this option. 27% agreed with statement that euthanasia should be legalized in all countries, 24% was undecided and 49% disagreed with this statement. 43% would not perform euthanasia if legalized. 42% agreed with statement that a patient should decide on his right to live. 19% was undecided and 41% disagreed with this statement. 11% agreed with statement that if a patient wanted euthanasia, nutrition should be stopped, 14% was undecided, 75% disagreed with this statement.

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(Kumas et al., 2007) [61]

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51% of ICU nurses stated they did not have enough knowledge about euthanasia.

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56% stated it was patient’s right, 24% would support patient’s request for active euthanasia, 39% would support passive euthanasia. 75% opposed active euthanasia, 73% opposed passive euthanasia. 81% thought legalization would be exploited, 77% said it would be exploited for inheritance reasons. 40% thought passive euthanasia is practiced in some cases, 20% that it is never practiced in Turkey.

(Mayda et al., 2005) [62]

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84% of oncologists agreed euthanasia should be discussed in Turkey. 42% believed euthanasia is performed in Turkey. 38% advised incurable patients not to start therapy.

54% of oncologists thought patients should decide about euthanasia, 42% said families and doctors, 4% relied on families.

34% had been asked for euthanasia. 44% did not object to euthanasia, 56% objected to it as unethical.

64% of those who performed euthanasia (n = 42) thought relatives and doctors should decide on withdrawing treatment in case of euthanasia.

51% of oncologists had sometimes withdrawn treatment.

36% thought patients and doctors and patients should decide, 2% thought that only patient could decide stopping treatment.

(Oz, 2001) [69]

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58% of nurses and physicians defined euthanasia as ‘allowing death, leaving patients to die’, 17% as ‘passive euthanasia, not active death determined by others’, 13% as ‘painless peaceful death’.

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21% of nurses and 18% of physicians had requests ‘to make death easy’. For 63% of nurses and 43% of physicians pain was major reason, but pain should be controlled.

For 14% of nurses and 30% of physicians loss of hope was major reason. Euthanasia seemed appropriate for 81% of nurses and 66% of physicians ‘if there was no possible treatment or other alternative’. 13% answered ‘if patient is conscious and he and his family wanted it’.

41% of nurses wanted an active role in euthanasia, 54% was undecided.

66% of nurses and 61% of physicians would not do it after legalization.

(Ozdogan et al., 2004) [71]

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Many physicians favoured a paternalistic approach and felt that patients are not able to cope emotionally with bad news.

(Ozkara et al., 2004) [73]

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92% of physicians defined euthanasia as ‘the performance of death upon request of a patient, who has a progressive, unbearable and fatal disease after a long and painful period with no hope of recovery in today’s medicine, with assistance of a physician, in better conditions and without pain’.

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85% wished for a public debate. 61% did not approve of euthanasia. Arguments against euthanasia were: probable abuse (42%), ethically incorrect (25%), religious (19%) en illegal (11%).

30% of physicians felt practicing euthanasia should be punished; 56% thought that euthanasia is practiced,

19% had encountered a euthanasia request.

(Pelin and Arda, 2000) [74]

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62% of physicians supported euthanasia, 60% only on conscious and persistent demands, 33% under strict regulations, 32% only passive form. 39% did not support euthanasia, because doctors should save life (58%) and science might solve problems (54%).

Keeping information away from patients in disease process especially in poor prognosis was almost a common practice in Turkey.

(Tepehan et al., 2009) [75]

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Nurses and doctors did not have same knowledge about different forms of euthanasia (active, passive, physician-assisted suicide and involuntary euthanasia); most well known was passive euthanasia (73% of doctors and 63% of nurses).

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56% of doctors and 53% of nurses wanted euthanasia to be legalized.

57% of nurses and 59% of doctors thought it is performed secretly.

40% of ICU doctors discontinued treatment in patients with an incurable disease on more than one occasion.

In ICU higher scores. If legalized 28% of ICU doctors would apply it versus 15% of paediatrics. 24% of ICU nurses would participate. Justifications for objecting to legalization were: not ethical, can be abused, religious beliefs and personal values. 65% of nurses and 73% of physicians agreed that individuals should have right to decide about own death.

(Turla et al., 2006) [76]

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Euthanasia is defined as the killing, through either an active or passive way, of someone who suffers from an illness which arouses pity and who will never get better when asked by either the person himself/herself or his/her relatives. 66% of health professionals thought euthanasia as such should not be performed. They were all worried about abuse of euthanasia, 30% noted religious reasons, 30% found it unethical and 15% illegal.

57% found it useful to have discussions about euthanasia.

63% thought decision should be made by both physician and family.

8% had been asked to perform euthanasia.

If it were legal in Turkey 74% would not perform it.

81% found euthanasia can be misused if it is legal.

(Yaguchi et al., 2005) [79]

ICU physicians in Turkey preferred oral DNRe orders, while 80% of Western physicians would apply written DNR orders.

Withdrawing or withholding life-prolonging treatments: In case of patient in vegetative state, IC physicians in Turkey chose life prolonging more often than physicians in other countries.

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They would, like their colleagues of southern Europe, treat complications with antibiotics, colleagues in northern and central Europe would actively withdraw therapy.

Findings regarding Moroccan patients

(McCarthy et al., 2004) [63]

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Use of oxygen + sedation stopped after complications. Morphine was used only for terminally ill patients.

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(Errihani et al., 2005) [52]

48% of cancer patients were active believers. Faith helps control fear and incertitude.

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(Errihani et al., 2006) [50]

After diagnosis of cancer 50% of practicing Muslim patients felt culpable and 93% started practicing. In both groups new behaviours: wearing of “hijab”, eating plants recommended in de Koran.

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(Errihani et al., 2008) [51]

Those who don’t actively practice their belief (49%) felt guilty, while those who were practicing believed Allah was testing them, so they accepted disease.

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Findings regarding Turkish and Moroccan patients ( sometimes other immigrant patients as well)

(ACTIZ, 2009) [22]

Relatives thought Allah would decide on end of life.

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Relatives noted that decision making within families was often difficult as it was not clear who had to decide on what topics.

(Buiting et al., 2008) [35]

Physicians’ data on treatment of immigrant and Dutch patients:

Immigrants had fewer euthanasia requests (3% of immigrants vs 25% of Dutch), were more often seen as incompetent (60% of immigrants vs 45% of Dutch), more often physicians’ decisions (39% of immigrants vs 25% of Dutch).

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less wish to hasten end (5% of immigrants vs 17% of Dutch).

Also less withholding of life-prolonging treatments for immigrants than for native Dutch (12% vs. 15%); more withdrawing (20% of immigrants vs 12% of Dutch), more respiration (38% of immigrants vs 16% of Dutch), more cardiovascular medicines. (30% of immigrants vs 11% of Dutch), but less artificial nutrition and hydration (12% of immigrants vs 28% of Dutch).

(De Graaff and Francke, 2003a) [17]

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Many Turkish and Moroccan patients wished to die in home country, but return is hampered when they have few relatives there and more relatives in Netherlands.

(De Graaff and Francke, 2009) [45]

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According to GPs and nurses, patients do not understand them. Non-satisfaction is often rooted in communication problems, Turkish and Moroccan patients need coaching by GP and nurses.

(De Graaff et al., 2010a) [18]

Some relatives saw wanting best possible treatment, keeping hope alive and not stopping feeding and giving curative treatment as a religious commandment.

Main concerns about ‘good care’ at end of life expressed by Turkish and Moroccan families were: maximum treatment and curative care till end of lives, never having hope taken away, devoted care by families, avoiding shameful situations, dying with a clear mind and being buried in own country. These wishes often conflicted with values of Dutch professionals, like improving quality of life, giving sufficient pain and symptom relief.

Relatives wished to decide as a family what information is given to patient. This wish sometimes conflicted with views of Dutch physicians.

‘Good’ care implied not stopping feeding.

(Koppenol et al., 2006) [59]

The immigrants’ way to deal with cancer is influenced by belief in supernatural forces. Cancer can be seen as a test or trial by Allah.

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(Korstanje, 2008) [60]

Relatives felt morally supported by religion.

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(Mostafa, 2009) [66]

Cancer was like Allah is testing you.

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Talking about cancer was not done in Turkish or Moroccan community.

(NOOM, 2009) [23]

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Elderly and children believed that aged people deserved rest, children had to look after them, and decision making should be left to children.

(Van Wijmen et al., 2010) [78]

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Significantly less use of ADs among people who had:

- children and a good relation with them, (15% versus 8%),

- only elementary or basic vocational training (24% versus 12% and 8% for those with secondary school and higher),

- a religious belief (16% versus 10%).

(VPTZ, 2008b) [26]

Reciting Koran verses gave peace to many Muslims. Dutch care professionals were not involved in rituals.

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In last days many people were assisting in practical matters, but personal care was often done by one or two women only.

   

Islamic women were often not involved in funeral.