Greek Care

Palliative Care

Palliative care is a completely unfamiliar concept for many older Greek Australians and their families and therefore not well understood. Some may even hold it in suspicion. There are linguistic and cultural reasons for this. First, there is no direct translation for ‘palliative care’ in Greek. Second, there is a strong cultural tendency to avoid focusing on ‘negative terms’, like death and dying. Some people may also see palliative care as breaking down customs of home and family-based care. Each of these issues points to the need for clear information about what palliative is and what options are available.

Palliative care in fact has a positive focus on enhancing quality of life. It aims to maximise ‘living with a terminal illness’, not focus on death. It emphasises both the quality of life of the individual and the person’s wider care network, especially the family. As a peaceful, planned approach to care for people with a terminal illness, it offers a range of person-centred services: pain relief, control of symptoms, rehabilitation, social support and end of life care.

Culturally sensitive palliative care

Culturally sensitive palliative care takes advice from both the individual and family members about important cultural, social and religious matters that affect the person’s comfort and sense of meaning. Practitioners build this into the person’s care plan and encourage a general sensitivity to culture-specific issues of importance to the individual.

Interdisciplinary care

Palliative care is interdisciplinary. It involves doctors, nurses, social workers, occupational therapists, music therapists, activities coordinators and, where requested, counsellors or psychologists. The important role of the priest is outlined later.

Making the decision to receive palliative care

‘Greeks have a kind of prejudice with death. They know that it will come, but they don’t want to talk about it.’

Making the decision to receive palliative care is likely to be influenced by many factors.

One factor is the typical Greek attitude to naming death and dying, or particular diseases, such as cancer. Wanting to protect their loved one, family members may not wish to name or recognise the illness as terminal.

With no direct translation into Greek, ignorance may also be a factor, leading to poor take-up of palliative care options among Greeks and late decisions to use palliative care. Many do not realise that palliative care is offered both in hospital and at home.

Giving information about palliative care

It is crucial that staff explain what palliative care means in a carefully stated and culturally respectful manner. When using an interpreter, care and clarity is especially important.

It is important too that staff inform patients and families of the range of home-based and hospital options as often it is the person’s final wish that they have some control over where they die.

Conflicting family attitudes

Family members may wish to protect their elderly relative from information about a terminal prognosis. In Greece it is very common for terminally ill patients not to be informed of their health status because the family does not wish them to be. Similarly, many Greek Australians don’t support this practice and may take action to prevent the disclosure of such information.

For many Greek families, palliative care is only considered a real option when all possible medical interventions have been tried. Even when a negative prognosis has long been known, even when a person has experienced lengthy periods of suffering, family members may wish to pursue all possible life-saving interventions, including resuscitation.

This may be explained by the deep cultural sense of obligation felt by family members to parents — often compounded by feelings of guilt over the sacrifices made by first-generation migrants for the sake of their children. They may also fear being judged by members of the extended family or Greek community if all the options have not been exhausted.

Different family members may have different attitudes and approaches. Some may support the idea of palliative care while others may want to try every medical intervention to keep their loved one alive for as long as possible. Such attitudes may be at odds with the wishes of the individual.

Practitioners need to assist the person needing care to make decisions in their own best interests and to work with family members to clarify whose interests are being served. Sometimes family members may be suspicious or hostile because they themselves are fearful, or because they feel guilty about not being able to care for their loved one. For earlier generations of Greek migrants, the experience of village life may still be vivid. They are likely to remember frail older relatives being cared for at home. Practitioners need to be sensitive to cultural differences around the experience of death and dying. You may need to consider using counselling services.

Whatever the source of discomfort or conflict, it is often difficult for family members to manage their own emotions in response to their loved one’s condition. Again, it is important where there is misunderstanding, lack of knowledge or conflict that all parties be adequately informed about the aims and processes involved in palliative care.

Practitioners report that the person needing care is often more resolved or emotionally prepared than their family. Pain and pain management are important issues for the person, who often views palliative care with relief and acceptance. The sense of security that an informed decision can provide appears to be highly valued.

Experiencing palliative care

The importance of a homelike environment cannot be underestimated. That means a situation in which family and friends are welcomed and find meaningful roles in relation to the care of their loved one. It also involves meaningful cultural practices that are integrated into everyday care. This includes culturally suitable Greek food, music, activities and other forms or enjoyment and entertainment.

Practitioners should be guided by the patient in terms of what activities are appropriate as people approach dying in different ways. Some want peace and quiet to reflect, to engage in prayer and to be with family. Others may want to continue to participate in more active, sometimes even quite noisy activities. Practitioners should also be sensitive to the responses of families to activities as these may differ from the patient’s. While the patient may wish to hear music, even dancing music, the family may not feel it a joyous time. Sensitivities should be assessed and music played only as appropriate.

While individuals may have made an informed decision about receiving palliative care, they may experience isolation, fear of the unknown or depression. The presence of family and the opportunity to be involved in appropriate activities is crucial. Palliative care patients report not wanting to ‘feel different’ and wishing to participate in activities for as long as possible.

The importance of family

People of Greek-speaking background like company. They are a very social people in general, and patients want their family around a lot. They ask for them. They do not want to be left alone. Staff have a role to play in encouraging family members to visit as often as they can and to provide the circumstances for this to occur. Patients should have their own private room with the space and comforts that make long family visits possible.

Touch and affection are very important. Touching, hugging, holding hands and other signs of affection are comforting. They allay fears and draw the person close to those they love. Reading, singing, playing music and sharing humorous stories are all important sensory activities that give pleasure and enjoyment that family members can readily provide.

The role of siblings

Siblings within a Greek family appear to play an important role in the good management of palliative care. It is often they who influence the person and who can steer a consistent course through the experience. Working with a patient’s siblings and informing them thoroughly is beneficial as they play an important role in helping patients have a ‘good’ experience of palliative care.

Greek food

As in other care contexts, the provision of culturally appropriate food is crucial to the person’s sense of self and identity. It provides personal enjoyment and confirms important cultural elements of identity. Food is a source of deep memories and physical pleasure when there may be decreasing opportunities for physical enjoyment. Often families bring home-cooked Greek food in to their loved ones in palliative care.

Greek music

Like Greek food, music is a source of memories, pleasure and identity. Palliative care patients enjoy Greek music playing in the background. They also enjoy watching music being played and dancing.

Personal care

People want to look good when they have visitors or participate in activities. The person may be concerned about their appearance as their illness progresses and want to present themselves to the world with the best face possible. Wearing nice clothes, using hand cream and perfume, putting on lipstick and hair styling all help to maintain self-esteem and encourage ongoing participation.

Reading

Reading can be a great comfort, especially reading the Bible. Reading the Bible in Greek has a soothing effect for patients with strong religious beliefs. Greek language itself plays a comforting and engaging role.

Spiritual support

‘In many cases the patient knows very well that the end is imminent. What the family does by hiding it deprives them of the support the person needs at this stage of their lives.’

The role of the priest cannot be overestimated. Religion is very important to most older Greek-speaking people, even if they are not devout. Religion offers comfort, hope and understanding. Frail Greek elders are often not scared of death itself, but do wish to have the comfort of spiritual discussion and support that a priest can offer.

A priest’s visit is likely to start like any normal conversation, in Greek, touching on the person’s life history, home village and family members. Discussion of the religious teachings, with the chance of asking questions and sharing one’s concerns in turn brings comfort.

When to invite the priest

Palliative care units typically invite a priest to administer the last rites, but this is not adequate. It is important to ask the patient if they would like to see a priest during the period of care, not just at the end of life. Often the priest is called too late because family members are worried the appearance of a priest will lead their loved one to think death is imminent. But patients and priests report that spiritual discussion can bring calm and comfort to both the patient and the family.

Healthcare professionals need to work with the family. They need to offer the opportunity for the priest to visit at different intervals during the progression of the illness, not just at end of life when the person may no longer be able to communicate.

Which priest to invite

Patients and their families typically do not want just any priest to visit. They are likely to want their local parish priest to attend, or a priest with strong affiliations with the person and family. Familiarity with the priest brings a sense of connection, comfort and reassurance.

Psychological support

Older generation Greek migrants are not generally inclined to use the services of psychologists or counsellors. Younger Greek elders may find it useful, depending on personal inclination. Greek-speaking psychologists can be beneficial for this group.

Initial assessment

It is important from the outset to establish from the patient what level of involvement in decision making and planning the person wants their family to have and who in the family they want to involve.

Whether the patient has full knowledge of their diagnosis and prognosis may be a complicated matter, as the family may wish to make decisions around this issue. The family’s views about what their loved one should know may not be shared by professionals. While it may not be possible for palliative care managers to inform the person fully of all the medical issues, they need to be clear that it is the patient’s, not the family’s, needs that are being served.

During the initial assessment process staff should:

• acknowledge family exhaustion and emotional investment in palliative care
• demystify the various processes involved in palliative care
• outline the kinds of support to expect, including the role of morphine
• record clearly the patient’s and family’s desires about end of life care, especially withdrawal of supports
• record any religious issues arising around end of life arrangements.

Person-centred care plan

A multidisciplinary care plan should be developed in conjunction with the family and include all the elements of homelike, culturally appropriate care noted above. It should make full use of the range of professional disciplines. It should refer to all the elements of a holistic person-centred approach to care. These should include the person’s:

• cultural background
• language
• socio-economic background
• religious affiliation
• family relationships
• generational attitudes
• personal needs and preferences.

Staff should also be aware that there is diversity within any culture; attention to each individual’s needs is crucial.

Effective Communication

If your client or their family members have difficulty expressing themselves in English, effective communication about palliative care may be best achieved by engaging a professional interpreter.

There are a number of reasons for engaging an interpreter when palliative care needs to be explained:

• the emotional stress on the family in such settings often makes it difficult for family members to interpret effectively
• using a professional interpreter allows the client and the family to ask questions without the risk of information being misinterpreted or ‘screened’
• the service provider can be sure that the information given is clearly understood.

(See Greek Language and Communication for more strategies.)

Staff care

Staff also need support as typically they will suffer grief and loss. Training and staff development are crucial elements in providing adequate staff care and successful culturally appropriate care.

Palliative care kit for residential care

Residential care staff should prepare a palliative care pack in advance so that it is available when a person decides to take up a palliative care option. Be aware that different people will value different things at this time.

Consider the following items and suggestions to help make the experience of palliative care as sensitive and individually appropriate as possible:

• icon (usually of Jesus or Mary)
• Bible or prayer book (available from a local church)
• electric candle or water with oil and wick (if bare flame is permitted)
  • guide for staff as to patient wishes so they may be implemented at any time
• aromatherapy items
• person’s choice of soft music
  • a tray with brandy and shot glasses (used after the person passes away; the  family offers this to visitors who come to see the person and pass on condolences)
  • incense, known as thimioto (available from an Orthodox  church; used when the person passes away, though smoke detectors may be sensitive).

Useful resources

• Palliative Care Australia (see their Resources section)
• Palliative Care Victoria
• Palliative Care Services in Victoria — Department of Human Services
• Multicultural Palliative Care Guidelines — Greek (from the Palliative Care Council of South Australia)
• Banksia Palliative Care Brochure in Greek