Palliative care for specific groups - Palliative and terminal care

Palliative care for specific groups - Palliative and terminal care
There is no recipe for dealing with specific groups. We discuss points for attention with specific groups. Be alert that they may be important. But there are also major differences within a specific group. Show interest in the patient and his family during your contacts and try to find out what they find important.

Palliative care for specific groups


There is no recipe for dealing with specific groups. We discuss points for attention with specific groups. Be alert that they may be important. But there are also major differences within a specific group. Show interest in the patient and his family during your contacts and try to find out what they find important.



For general points of attention in the approach to patients with a migrant background, see Chapter "People who have trouble understanding information" and "Migrants" We only discuss specific aspects or topics that deserve extra attention or that may be sensitive (Mistiaen 2011).


Talking about the diagnosis and prognosis; the role of family

Find out how the patient and his family deal with the diagnosis and prognosis, or how they discuss this with each other. Determine with whom you talk about important things. If necessary, ask the doctor what he told you, who and who the contact person is. The eldest son or daughter is often the contact person.



The approaching end of life

The expected death, the words "terminal" and "palliative" can be charged topics. Topics that people with a migrant background sometimes do not or only talk about in covered terms. They often strive for a life as long as possible. Shortening life or stopping treatment is then not an option, if only to deprive the patient of hope. In many cultures it is not common to think about dying and the possibilities for a good death. Death comes as God or Allah wants it and when God or Allah wants it. People may also consider it important to be clear-minded in the final phase based on their beliefs or beliefs. Sedation may then be less acceptable.


Try to engage in an open attitude and ask how the patient or caregiver views death.


Family care

In many cultures the family plays an important role in all kinds of decisions. Sometimes the views of the family are more important than the individual preference of the patient. In many cultures it is of great importance to take care of a sick family member and to visit the sick person often. Allowing professional care can be a big and difficult step. It must be prevented that such a step can be explained by others as: they do not take good care of their family member. Express appreciation for the care that the family offers. Emphasize that family care remains important alongside professional (home) care.


Pain and medication use

People with a migrant background sometimes express their pain differently than we are used to. Working with a pain measurement instrument is often difficult. Pain is sometimes an expression of other discomfort. Talk about that. Explain that people feel more pain when they worry or experience other discomfort.


People with a migrant background cannot feel seriously taken if you advise them to use acetaminophen. Take the time to explain that acetaminophen is a good painkiller, even if it is cheap and even if it is for sale at the drugstore. Explain that there are few side effects and that it is therefore a safe medicine. And that, if necessary, the doctor can always switch to stronger drugs afterwards.


Suppositories are not always acceptable. Take this into account and possibly discuss a different dosage form.


Herbs and home remedies, oils and spreads are used quite often. With this, the family wants to offer homely, trusted care. Ask for it. If necessary, check whether side effects or interactions can occur.



Delirium and depression

Psychological complaints can be difficult to discuss. They are often loaded. Depressive symptoms can get worse when the patient realizes that he will no longer see his country of origin and family living there. Confusion, such as with a delirium, can also be fraught. Confusion can be associated with madness or ghosts. The patient and the family are sometimes ashamed of it. It is often not known that the symptoms can be the result of a physical illness. They are often attributed to the medication used.


Be alert for side effects of antipsychotics and antidepressants in people with a migrant background. Some medicines are broken down faster, others slower (see in this chapter).


Palliative care points of interest for people with a migrant background

The points for attention in the table below are not "laws", but indicate that there are differences in views and standards. Do not start from what you think patients with a migrant background want based on their culture and beliefs. Scan whether, if that is possible, talk about it.


Points of attention for patients with a migrant background

Communication  - Not everyone appreciates very direct and open communication; find out what the wishes of the patient and his family are about the way of communicating
Role of family

 - In many cultures, the family plays a major role in decisions about health, care and dying; decisions about life and death are not seen as individual choices and responsibilities, but as a family matter

 - Not only medical considerations play a role in those decisions, but also social interests

Vision of death  - Death is the end of life, but can also be seen as the beginning of another, a better life
Complete your task

 - As a believer you have been given the task of living as a good person; you must complete that task until the end; it is not up to man to intervene in the moment of death

 - From this religious perspective, palliative sedation may not be a desirable option

To die

 - It is not up to humans to intervene in the dying process and it is therefore not obvious that you think about how to make that process as bearable as possible

 - Palliative care is often unknown and is often associated and confused with euthanasia

Good care in the terminal phase  - Good care is: continue to take good care of the body (provide food and fluid) and treat the disease



Dementia sufferers

As dementia progresses, the emphasis in care is increasingly placed on quality of life. In addition, it is important to be able to estimate suffering (discomfort, discomfort). There are special assessment lists for this.


Little specific information is known about sedation of people with dementia. Cooperation is being sought in various regions between the dementia network and the palliative care network ( There is also an example guideline for hospices for the care of people with dementia (


Mentally challenged people

People with intellectual disabilities are reaching an increasingly old age. Palliative care is increasingly being offered to this group. Much suffering can be prevented or reduced by early identification of pain and other physical complaints.


Talking about the death

Family of a mentally impaired patient sometimes finds it too stressful for the patient to talk to him about death. However, people with a mild intellectual disability are generally able to talk about the approaching end of life and find it important. They want their wishes to be heard (Bekkema 2015).


People with mild and moderate mental disabilities are aware of death. The table below shows to what extent there is awareness of death in people with mild and moderate mental disabilities).


Awareness of death in people with intellectual disabilities (source: NVAVG guideline for palliative sedation in people with intellectual disabilities 2009)

Moderate intellectual disability (IQ 35/40 - 50/55) developmental age 4 to 7 to 8 years Slight intellectual disability (IQ 50/55 - 70) developmental age 7 to 8 to 12 years

 - There is a limited sense of death

 - There is a beginning of being able to move into another

 - There is some insight into structures such as time, family

 - Understanding and expression of emotions in language grows

 - Awareness of reality is growing; there is talk of searching for explanations for death

 - There is a growing realization that death is irreversible

 - In the first instance, a sober reaction to dying predominates

 - Guilt and fear can arise as a reaction to the grief of others; the own grieving reactions often come later

 - There is a conscious sense of death

 - Empathy is present, but from your own experience

 - There is an increasing insight into structures and worldview

 - Logical thinking is linked to concrete events

 - There is a real picture of what death means

 - There is a conscious realization that death is irreversible

 - The patient thinks and talks about the mystery of life and death

 - The grieving process is comparable to that of others




Points of attention

  • Observe and ask questions to the patient and to family and caregivers in order to be able to identify and interpret changes. This way you try to determine the needs as well as possible.
  • Also in the palliative phase, ensure that the living environment remains safe and well-arranged. Give the patient with an intellectual disability an explanation of his level. Consistent with his questions and his world.
  • Take questions seriously. Give logical explanations and make connections.
  • Be clear in your communication.
  • Ask if a wish book is being used, for example What do I want? If I don't get better ... "( If such a wish book is completed with and for the patient, it can provide a handle for communication about the end of life.
  • Be alert for medication use, adjusted dosage and interactions.
  • Ensure continuity in healthcare. This offers peace and safety.


Decisions about the end of life

Decisions about diagnostics and treatment and end of life decisions usually also involve family (or legal representatives) and counselors. Many people with an intellectual disability are not or have limited competence. Of course they show what they want in words or behavior, but it requires expertise and experience with this one person to interpret his behavior correctly. Care providers can make use of the observations, knowledge and experience of family, counselors, behavioral experts and AVG (doctor for the mentally handicapped). Encourage counselors to use observation lists to substantiate their non-fluff feeling. In the event of incapacity, only the treating physician and the legal representatives are authorized to make decisions. And life-ending actions are only permitted with competent persons.


When patients use medication for a long time because of other conditions, usual dosages may need to be adjusted for sedation.


People with a psychiatric disorder or addiction problem

Palliative care for a patient with a (serious) psychiatric disorder is often complicated by the psychiatric problems or their consequences:

  • The patient can have all kinds of limitations: perception, insight into illness, self-care, social skills and ability to organize his life.
  • There is often no or a small social network.
  • The patient usually uses a lot of medication: for his psychiatric disorder or addiction, but also for other health problems (obesity, cardiovascular diseases, lung diseases, diabetes). These health problems are sometimes related to the disorder (parkinsonism due to the use of antipsychotics) or to the often unhealthy lifestyle (smoking, little exercise, alcohol and drug use).
  • The use of medication for many years (benzodiazepines and other psychotropic drugs, opioids) can cause problems in determining the dosage of pain medication and palliative sedation.
  • Some hospices exclude patients with a psychiatric history from being admitted to the hospice.



Points of attention

  • Scan whether the approaching end can be called.
  • Be clear in your communication.
  • Be alert for medication use, adjusted dosage and interactions.
  • Ensure continuity in healthcare. This offers peace and safety.