- Most Italian families, like many other members of the community, do not have a good knowledge of palliative care received in residential aged care facilities or in community care settings.
- Provide updated information in Italian and English.
- There are family and community expectations of the role of the spouse as carer, of the children of the dying person and of the dying person.
- Traditionally the family expects to be involved from the start to deal with any terminal illness.
- End of life plans are to be discussed.
- Professional care staff boundaries to be explained to Italian families.
Many Italian families don’t have a good knowledge of the scope of services around palliative care and where and how it can be received. Many people might not be aware that their loved one is receiving palliative care whilst in a residential aged care facility. They might not know that palliative care can be received for chronic degenerative conditions like end stage dementia or different stages of cancer.
The gamut of allied services involved could be outlined to families as well as the role of specialist community nurses. There is also little knowledge of the administering and function of pain relief. To increase knowledge around palliative care services provide information to patients in both English and Italian. Often children of migrants won’t be profient in Italian so it will be neccessary to also provide information in English to the patient so that her/ his children can also be informed.
Most older Italians will not want to receive information about palliative care until they are in a position where they require it. Also the Italian patient and their family do not want to speak about their feelings surrounding their situation. They are more interested in receiving information on practices and programs that might be able to make them feel physically better such as physiotherapy sessions. Older Italians generally are not very practiced at talking about their feelings without getting too emotional. Older Italians like to believe that there is hope in living well.
There is an expectation that the family members will all play their role in the care of the loved one. There could be feelings of internal conflict in some individuals as the family role expectation confronts the individual’s own wishes or beliefs. Some family members might behave as others expect them to, suppressing their own wishes. It is important to be aware of family and community expectations of the role of the spouse carer, the child and the dying person. There are many obligations felt by children of dying parents based on sibling status and gender, coupled with a general belief that “it is necessary to do one’s duty”.
The level of care provided by a range of close people in the Italian family circle is usually very high. Professionals often understand that families have expectations but should also invite the family to express what these are and factor them into the joint care plan.
Where volunteers are involved in the care plan of the Italian client/resident, they should be informed about the Italian culture, the client and some palliative care knowledge.
Traditionally, the family expects to be involved from the start to deal with any terminal illness, and they should be included in the care plans. Some families, relatives and friends might wish to prevent the communication of the diagnosis and prognosis from medical professionals to the dying person. Find out if this is what the family wants. Families might feel that they want to protect the dying person from further suffering. They might believe that the dying person will give up hope, thus hastening death and losing the “will to live”.
Take time to talk with families and patients about the end of life issues including emotional expression like anxiety, loss & the grieving stages. Link in to Italian speaking doctors, psychologists, spiritual guides such as priests etc.
Take time to explain end of life plans and include discussions, assessment and care planning, care co ordination, service delivery, last days of life and care after death. Even providing information for the community involved would be a good idea.
Gather plans for advance care decision making well before carrying out the above, whilst the client still has the power to speak for themselves. Many Italian families might not be aware that this is a formal plan that is made and noted. Of course there is the possibility that the client will leave the decision making to a family member and again watch out for family politics and have clearly noted who has been appointed the decision maker with an advance care directive.
Some Italian families might not be aware of enduring power of attorney and guardianship so providing this information in Italian and English will also be helpful.
In the wish to provide the best care, families might forget that nursing staff have professional boundaries that they are expected to maintain within the profession. An outline of these boundaries would be helpful to the Italian family. At times with some individuals, strong expressions of emotions might cloud sound judgement when dealing with staff.
Advance Care Directives are not widely considered or undertaken in the Italian Australian community. The document below outlines certain cultural issues influencing reasons for this.