The provision of culturally appropriate ACP involves clinicians eliciting and complying with the patient’s preferences and values about an ACP and their decision-making processes. For information and eLearning modules in ACP and communication skill development, refer to the ACP website.
For cultural and religious reasons it may be more challenging to discuss ACP with patients from CALD backgrounds.
The following points are approaches to consider when discussing ACP with CALD patients and families, in order to provide and open and supportive environment:
- Ideally, discussions on ACP should be performed well before an impending health care crisis and should become part of the patient’s routine care. It should also be a continuing discussion as patient’s views change, they grow older or their health status declines and their perspective on their health care preferences change. Incorporating an ACP discussion on a yearly basis is advisable.
- Patients who are competent to make decisions should be asked if they wish to discuss ACP on their own or with the support of their family member(s). If they nominate family member(s) as the designated decision maker on health care issues any ACP discussion should include the family. It is also important to determine the patient’s preference for being present at the discussion and to remind patients that their decision will be recorded in the notes and that they can change their mind at any time. This is important as there is a common misconception that once completed an ACP cannot be changed.
- Sufficient time must be allocated for the discussion. Setting up a separate time allows for a more thorough discussion and question and answer sessions. Also the patient may need to make arrangements for family members to attend. ACP discussions should be completed over a series of meetings as it is a process of thinking about, talking about and if people wish, documenting future health care preferences.
- The discussion should be in private. The health provider should encourage the patient and their family to ask questions. The health provider should reassure the patient and the family that the ACP will be shared with those who are on the patient’s health care team ensuring that there is a shared understanding of what is important to the patient and/or family.
- Provide detailed information including the natural course of the disease, the prognosis, and the chances of survival. Many family members will pursue less aggressive treatment if the chance of survival is poor. Help the patient and family understand that “doing everything” may also bring about additional pain and suffering. However, recognise that for some people, even in the face of a low survival rate, aggressive treatment is expected and supporting those decisions is important. When the patient or family wants “everything possible done,” an exploration of what that means can provide a greater understanding of what’s behind the request. Underlying concerns may include: denial of the illness or the progression of the illness; unrealistic goals; fear of dying, and loss of self-control; false hope; or a sense of familial duty (Braun, et al., 2010).
- Patients and family members need to be assured that an ACP that excludes curative treatment does not mean the patient will be abandoned by the health care system. The health provider must provide reassurance that stopping curative or life-supporting treatment does not mean no treatment, but the focus of the patient’s treatment will be the provision of the expert management of symptoms the person may experience.
- For some cultures, the concept of present orientation is to “take each day as it comes”. The health provider may suggest having a trial intervention to help with the decision-making process. A trial intervention is time limited and takes the approach of “Let’s see what happens to your mother’s condition in the next few days and we can then revisit the discussion on life-sustaining treatment. Meanwhile if you have any questions for me, please feel free to ask them.”
- A religious leader can play an important role in facilitating the discussion and decision-making process in ACP through clarification of how certain aspects of a religion’s principles or beliefs may influence the decision on providing life support measures. The religious leader can also act as a crucial intermediary in helping the patient connect with his or her faith or spiritual life.
- When the discussion of death and dying is a taboo subject, the health provider might suggest that the patient do a life review. Xiao et al.’s (2011) study on Chinese patients with advanced cancer found that encouraging patients to do a life review prepared them for death. Encouraging the patient to review and value his or her life experiences and complete unfinished business may enable the patient to work on an ACP.
- More subtle, indirect and implicit non-verbal communication may be preferred when discussing an ACP. Non-verbal communication includes active listening with pauses between sentences, silence and where appropriate physical contact such as holding the patient’s hand.
Scripts for the discussion on ACP
Ask permission to have the discussion. This shows respect.
- “I would like to talk to you about what kind of care you (your mother) would like if you (she) got really sick. Is that ok?”
- “If you get really sick, I am concerned that we do not know what you want or how you would like to be cared for. Could we talk about it now?”
- “What kind of medical care would you want if you were too ill or hurt to let someone know your wishes?”
- “There is a way to let your family, friends, and health providers know what your wishes are and to avoid any confusion later. This is called an ACP. This is where you think about, talk about and if you would like to, document your preferences for your future health care needs. This helps make it clear what you want and do not want if you are very seriously ill.”
If the patient is seriously ill and does not have an ACP.
- "I realise these are hard questions for you to think about, but because you are so seriously ill, if your heart stopped or you stopped breathing what would you like to have done?"
Some patients avoid discussions because of a belief around “hope or a miracle cure.” Be open and honest, and refocus on the possibility of different types of hope and miracles.
- “I believe (or I know you believe) in hope and miracles, but sometimes a cure doesn’t happen. However, there may be other types of hope and miracles to consider, such as a good death, a peaceful death having all your family around you, or for the relief from pain and suffering. What do you think?”
Developing trust and rapport with CALD clients and their families, improving communication and working with interpreters effectively, are all important aspects cross-cultural interactions with CALD clients. Here are some guidelines on:
