Background

Palliative care is the care that is provided to patients who are chronically or incurably ill. The goal is to relief the symptoms that patients experience, such as pain or distress. Initially, palliative care was provided to terminally ill cancer patients. Lately, however, there has been a shift which means that now a lot of other patients, such as patients suffering from heart failure or COPD, do get a palliative treatment.  There has also been a shift in that palliative care providers pay attention to patients with specific cultural and sociodemographic characteristics, such as non-Western immigrants.

Studies in non-Western countries have shown that the citizens of these countries have limited choices with regard to getting medication against pain. This is due to poverty. It is also true that family care systems, religious belief and practices and a traditional view on care, may influence the use of palliative care in these countries. Other issues that cultural minorities experience in Western countries could experience are language difficulties, health literacy difficulties or discrimination. The way in which palliative care is available in these Western countries might also be mismatched to the cultural and / or religious background of the non-Western immigrants.

A clear example of how these difficulties could work out is as follows: Some muslim patients with incurably life-limiting illnesses who live in Europe often do not like to seek help from professional caregivers or insitutions. They would rather use the care provided by their family and close relatives. This is due to negative experiences with the care services, which could be about the food (such as not taking in account the food that is permitted for them and providing these muslim patients with bacon or experiencing discrimination). These muslim patients are often also concerned about criticism from their community. Some muslim (or other religious) patients might also believe that illness and disease are God’s will and that it is not right to seek out professional care.

The authors of this article found, in earlier empirical research carried out by them, that care professionals in the Netherlands often experience difficulties in providing good care and communication to immigrant patients. One of the reasons for this is that they find it difficult to meet the needs of these patients and their families. Providing good care and communication to immigrant patients is further complicated by that some patients lack knowledge about their diseases, that there are some strong cultural patients within their (big) families and that there are sometimes inadequate interpreter facilities.

In the Netherlands, the Turkish and Moroccan people form the largest immigrant group. They come from different places in the world, but they share some important features, such as that that they often come from poor agricultural regions, that they arrived at low-paid ‘guest workers’ between 1950 and 1980, that they often live in deprived neighbourhoods and that most of them belong to a Muslim minority group. The first generations of these Turkish and Moroccan are ageing in this year and upcoming year, which means that they will increasingly need palliative care.

The authors of this article performed earlier literature research and found that the issues that were mentioned before that non-Western immigrants often experience also count for this specific group of immigrants in the Netherlands. For example, research has shown that the Turkish and Moroccan elderly experience barriers when using Dutch professional care, with one of the reasons for this being the strong role of family care in their culture. However, the researchers could not find any article about Turkish and Moroccan people in the palliative phase. This could be due to the fact that these immigrants were still healthy. But, since many of them are ageing, the authors decided to perform an international systematic literature review based on two questions:

What is known about the care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and care professionaLs?

What is known about communication between these patients, relatives and care professionals regarding care and treatment in the palliative phase?

The perspectives on family care

From the studies that looked at family care, three different perspectives on family care could be distinguished. Family care could be seen as: a social duty, an economic neccesity and or a burden.

Family care as a duty

As seen before, family members are the key providers of care in the Turkish and Moroccan immigrant groups. This is true for both the country of origin as for the immigrant countries. In Turkey and Morocco, most patients are supported by the family. This is also seen in the Netherlands, where family care is seen as an obvious duty. This means that many of the patients expect their children and their children’s partners to take care of them. This often comes down to the daughters or daughters-in-law providing most of the care. This means that they prepare food for the patients and for the visitors, that they do paperwork and that they accompany the patient to the doctor as an interpreter.

Family care as an economic necessity

One of the reasons for the emphasis on family care is that of not being able to use other kinds of care because of poverty and a hospitals’ lack of resources (in Turkey). In Morocco, cancer patients pointed out that professional treatment was often unpayable and not covered by medical insurance.

Family care as a burden

Family care is also seen as a burden. Especially studies in the Netherlands showed that sons and daughters of Turkish patients sometimes even decide to move out as a way to escape from the duty. One of the reasons for this too high of a pressure that leads to exhaustion is that there are often many different opinions regarding the feasability of family care and that the financial costs are often not covered by health-care insurance which leads to a heavy financial burden on the family.

The perspectives on professional care

From the studies that looked at the contribution of professionals in the care for incurably ill Turkish and Moroccon patients, three topics were mentioned very often; a preference for hospital care, barriers to professional care and the quality of professional care.

A preference for hospital care

Most of the cancer patients in Turkey show a preference to stay in the hospital, because they feel safe. Turkish professionals who know that the ill patients can not be cured, want them out of the hospital. Also, most general practitioners in Turkey prefer that their patients are hospitalized, again with the reason being safety. Turkish doctors are also more likely to fulfil the patient’s family’s wishes than the wishes of the patient themselves. From studies in the Netherlands it became clear that most Turkish and Moroccon patients prefer to die at home. When they think they can still be cured or when they want to relieve their family from the burden of family care, they would prefer to be in a hospital. Another finding is that immigrants were more likely to die in a hospital than Dutch patients.

Barriers to use professional care

According to patients, relatives and professionals, the key reasons for that immigrants often have a limited use of professional care, residential care for the elderly or hospice care is that they are unfamiliar with the available care and because of language barriers. Other reasons are financial barriers and the family duty of providing care for the patients. For instance, the relatives’ care preferences and feelings of shame often exert a big influence on that there is a limited use of professional care.

The quality of professional care

The use of hospital care in Turkey was hampered by limited communication between patients and relatives and because of limited cooperation among professional. Also, more than 50 percent of the nurses that work in a oncology centre in Ankara had inadequate experience with pain management. In Morocco, the nurses and doctors also pointed out that there is a lack of resources and limited training in the treatment of cancer-related pain. In the Netherlands, the relatives that are seen as obligued to provide care for the sick patients are often very critical of the professionals’ activities. The professionals in the Netherlands think that palliative care is often of insufficient quality for immigrant patients, because of issues in communication.

The perspectives on end-of-life care (EOL) and decision making

When studying the perspectives regarding end-of-life care or decisions, five topics were mentioned often: hope and faith, views regarding euthanasia, withdrawing and withholding treatment, artificial nutrition and continuing to offer food and involvement in decision-making.

Hope for cure and faith in Allah

Most of the Turkish and Moroccon patients want a maximum treatment until the end of their lives. This is also called life-sustaining treatments. They only refused this life-sustaining treatment when the patient has poor family relationships, pain or depression. Muslim patients that were not practicing their religion, felt guilty. The Muslim patients that did practice their religion, saw their disease (cancer) as a divine test (a test given by Allah).

In the Netherlands, this specific group of immigrants also often want life-sustaining treatments. For instance, immigrant patients were more likely to be offered life-proloning treatments, artificial respiration and cardiovascular medication compared to Dutch patients. For some patients and families, this wish for life-proloning treatments can be explained by their religion (Islam). For example, relatives of the patient often want the patient to die with a clear mind, so that they can have a good start in the hereafter.

The perspectives on euthanasia

In the Netherlands, euthanasia is defined as the ending of life by a doctor at the request of a patient. Physician-assisted suicide is one way of doing this. Euthanasia is not about the cessation of treatment when treatment is pointless. This is explained of the fact that it is considered normal to cessate treatment when there is no hope for cure with the help of medication.

In Turkey, the definitions of euthanasia vary between the respondents. When comparing doctors nd nurses, it seems that they also have very different knowledge about the different forms of euthanasia (active euthanasia, passive euthanasia, physician-assisted suicide and involuntary euthanasia). They seem to be most familiar with passive euthanasia. Most nurses and doctors in Turkey defined euthanasia as: “allowing death, leaving patients to die”. The second most given definition was: “passive euthanasia, not active death determined by others”. The last often given definition of euthanasia was “painless, peaceful death”.

Most professionals in Turkey do not approve of euthanasia. Reasons for this disapproval are the fear of abuse, ethical principles, religious beliefs and personal values. There are no Moroccan studies found on the views on euthanasia. In the Netherlands, a study concluded that patients and families with a Dutch background were more likely to request euthanasia than immigrants and their relatives.

Withhdrawing or withholding life-prolonging treatment

The relatives of Turkish patients want them to life as long as possible. This is why older Turkish patients often choose for life-prolonging treatments. In Turkey, 38% of the Turkish doctors advise some patients not to start a life-prolonging treatment and 50% withdraw treatment. They see this as a part of their job.

This withdrawing of treatment is more difficult than not initiating a treatment and often leads to discussion.

Continuing to offer food and artificial nutrition

Studies concluded that Turkish patients want to be fed until they die. From the health staff, 75% with the statement that nutrition should be stopped if a patient wants euthanasia. In another study, 68% of the nurses agreed that artificial nutrition should always be continued. No Moroccan studies were found on this. In the Netherlands, Turkish and Moroccon families preferred that their terminally ill relatives would be fed until the very end. When comparing Turkish and Moroccan patients with Dutch patients, the immigrants were more likely to be provided with artificial nutrition and hydration than the Dutch patients.

Involvement in end-of-life decisions

In Turkey, most of the cancer patients want to be involved in decisions about treatment. However, the use of written directions for this is often low and therefore decisions are often made verbally. In practice it comes down to that the relatives that make end-of-life decisions for the patients. 54 percent of Turkish oncologists think that patients should decide about euthanasia, and 42 percent of the oncologists feel that families have to decide jointly. The views on the end-of-life decision makers was not studied in Morocco. In Dutch studies, it seems that the relatives of incurably ill Turkish and Moroccan patients did not want to make any end-of-life decision, because they feel as the end of life is decided by Allah.

The findings related to communication

When addressing the communication between Turkish and Moroccan patients and their relatives, four topics were mentioned very often: communicaton about diagnosis and prognosis, communication about pain, sorrow and mental problems, language barriers and communication patterns within the family.

Communication about diagnosis and prognosis

In Turkey, relatives may form barriers when informing patients about a bad diagnosis or prognosis. Many relatives (around 66 percent) did not want the patient to be informed, so that they would not experience a negative affect.

The likelihood that Turkish doctors inform patients is related to the socio-economic status and educational level of the patients. It also depends on the type of illness a patient has and on the preferences of relatives. Professionals hold different views on informing patients and relatives about a diagnosis and prognosis. These attitudes that professionals hold are influenced by their skill in bringing bad news and by the stage of disease that the patient is in. For example, trained and more experienced doctors are more likely to inform the patient. Also, 76 percent of the nurses would inform a breast-cancer patient who expresses the need for a diagnosis, but 96% would not do so when the patient is terminally ill.

A remarkable finding is that in Morocco, 33 percent of the cancer patients did not know that they were ill, while the relatives would know in 89 percent of the cases. In the Netherlands, Turkish and Moroccan patients are not informed sometimes. Also, elderly patients do not like to talk about life-threatening illnesses, whereas younger patients often prefer to be informed and do not always inform their relatives. The arguments for these findings is that telling the truth to patients would hasten a death and that this information might lead to gossiping in the community. Turkish and Moroccon relatives also often dislike the way in which Dutch professionals inform patients. They think it is way too direct. Also, in informing patients about diagnosis and prognosis, the influence of relatives is strong, because they often act as interpreters.

Communication about pain, sorrow and mental problems

It seems that the communication with patients who are at the end of their lives, is often problematic. For example, Turkish patients often do not want to talk about pain, because they do not want to be dependent on analgesics (pain medication) and they did not want to upset their relatives. It also seems that Turkish nurses often feel as if they are uncapable of expressing empathy for patients who are dying. Moroccan doctors and nurses often hae inadequate measures to detect or asses pain. In the Netherlands, according to patients and relatives, immigrant patients do not like to talk about psychological problems, depression or dementia.

Language barriers

In Morocco, 25 percent of the patients only speak Berber. This means that they do not speak Arabic, which is the main language in Morocco. This leads to difficulties in the communication between patients and professionals.

In the Netherlands, language barriers are often handled by using the help of relatives, bilingual interpreters or other professionals. Most of the elderly Turkish patients living in the Netherlands state that they want Turkish-speaking staff, which sometimes is provided. This could also be a problem, because it could lead to a lot of social control within the community. In Germany, another big immigrant country, it was seen that language barriers are often a problem for professionals, because they can not follow what is being said between the patients and their relatives.

Communication within the family and within the community

Some studies suggest that communication problems in palliative care are sometimes related to the social patterns within families. In one study performed in Turkey, it was concluded that patients thought that the dominance of families in patient support resulted in low-disclosure rates. Among Turkish and Moroccan health advisors in the Netherlands, it was seen that Turkish and Moroccan immigrant families almost never seem to talk about illness and the problems it causes, because they want to avoid gossiping in the community. Elderly immigrants feel as if their families face a dilemma. Because of the ideal that children take care of their (ill) parents, there is a lack of open discussion about care needs and a lack of looking for other sources of care. Explanations given for the limited communication within families were that immigrants have limited experience with the care of ill patients (because earlier generations were cared for in the country of origin), a lack of knowledge about the facilities in the host country and religious traditions.