There are many things that can support planning for end-of-life care. Think about some of these ideas.
- Check that a patient nearing the end-of-life has nominated someone to make decisions when they can no longer do this themselves. Have they discussed their wishes and preferences with that person? Are their wishes formalised in an Advance Care Directive or a medical power of attorney? And, if so, does the treating team have a copy?
- Ask a patient if they would like to see a priest, minister, imam, rabbi or other. Discuss how their spiritual beliefs might impact upon their care preferences or what happens to them once they die. Remember the patient may not adhere to all aspects of their reported faith – ask what is personally meaningful to them. See Practice Resources.
- Support the wishes of patients, families and carers who want to include religious or cultural practices into their care. This may include ceremonies, singing or particular foods. Don’t be afraid to ask one of those present the significance of the ritual. Share any cultural knowledge you gain with colleagues or students.
- Check if you patient has discussed death and dying with their family. Discuss whether they have a current resuscitation plan in place.
- Practice asking open questions. For example: I wish our treatments were more effective, but we cannot cure your illness. If you did become more unwell, what would be the most important things for you and your family? Allow silences; give patients/their family members’ time to think and respond, rather than react.
- Use the REMAP tool. This is a talking map that provides sign posts to support you through having a complex conversation with a patient.
- Tell a patient/family member about the My Values website. This can help patients and their families formulate what is important to include in a care plan. It consists of statements to identify, think about and communicate preferences regarding medical treatment. Access the webpage yourself and think about your own values regarding care if you became incapacitated.
- If you have a patient in the last few days of life, check if your hospital has a strategy or approach. As an example, you can look at the Care Plan for the Last Days of Life (developed by Government of South Australia, SA Health).
- Anticipating a conflict situation? Access the following guide to give you some step by step suggestions on how to best defuse a conflict situation.
- Family meeting: Fact Facts and Concepts #223, Palliative Care Network of Wisconsin, provides an overview for running a family meeting to discuss end-of-life care goals.
- Take a few minutes to create a map of a patient’s close ties and family. This can be the start of identifying a potential alternative decision-maker as well as identifying who needs to be included in discussions about the patient’s care. Remember, ‘family’ is who the patient says it is. Notions of kinship may vary depending on the patient’s cultural background. The closest person to a patient may be their spouse or same sex partner, biological, adopted family or in-laws, close friends, neighbours, or someone from their religious, ethnic or cultural community. The traditional ‘next of kin’ concept may not be appropriate for all patients. Ask them who is important to them.
- Can family stay overnight? If so, does the family/key person know that this is an option? This is likely to be more important as the patient nears the end of life.
- Prepare families when the end of life is imminent. If families are not aware that their family member is expected to die soon, they may miss the chance to say goodbye. This can lead to feelings of regret and make the death harder to cope with. Are there any written materials that you can provide? Some family members may want to be there regularly throughout illness whereas others may wish to be less involved but may still want the chance to say goodbye. Make sure it is clear to the family that the patient is nearing the end.
- Before a family meeting, ask your patient if there are any aspects of their care, symptoms or condition that they would prefer to discuss in private. Agree a time to do this with the patient. Manage the meeting to focus on aspects of symptoms, care or treatment that the patient is comfortable being discussed in a group setting/with family.
- Consider learning more about cultural competence, Centre for Cultural Competence Australia, training courses
- Find out more about cultural practices or beliefs about illness and death in relation to an ethnic or religious group you have encountered in your professional practice recently. Remember that not all groups are homogenous. If in doubt, you can always ask the patient (or family member) about what is personally and culturally appropriate. See Practice Resources.
- Remember the person is is the centre of the care conversation. If you need to use a translator to communicate with a patient, ensure you look at the patient and listen to the translator rather than looking at the translator. Maintain eye contact if culturally appropriate.
My Toolkit contains ideas, suggestions and other resources to help you maintain your knowledge about end-of-life care and facilitate discussion and engagement in your practice setting. Please find below a checklist with ideas for action and an associated sheet of resources. You can download these resources for use in your workplace.
Download Module 4: Planning End-of-Life Care
Download Checklist (249kb pdf)
Download Resources (159kb pdf)
Download Complete Set
Complete Set of Checklists (825kb pdf)
Complete Set of Resources (1MB pdf)
Last updated 4 April 2018