Chapter 1: Conversations about the future
Planning for future care
I was so relieved when we put a plan in place. At least I had some idea of what my husband wanted and how I would try to handle it.
Below are some steps to help you and the person who is ill get started with the goals of care. Click on each one for more information.
Encourage the person who is ill to have conversations with healthcare providers and ask to be included. If the person is living with a serious health problem or illness, it is even more important to talk to the doctors and nurses providing care, as well as family and friends. Try to include these points:
- What are the care needs? How might these change as illness progresses?
- What are the choices for care?
- What decisions or types of decisions may need to be made in the future?
Having these discussions with the healthcare team, patient, caregivers, and family will let everyone know and understand the patient’s wishes about care and will help caregivers and family feel more comfortable and confident in making decisions and guiding care if needed.
Consider having a facilitated family meeting to help with difficult discussions about the goals of care.
It is helpful to get the patient’s wishes or instructions regarding healthcare in writing, essentially creating the advance care plan. Using the “My Wishes, My Care: Thinking it Through” or “Planning for My Care” booklet in the resources below is a gentle and effective way to start these conversations and can help the person who is ill think about what is important to them. It can open the door for completing the advance care plan.
An advance care plan can be changed at any time and should be updated by the patient as their condition changes. Each change on the document needs to be dated and initialled or signed next to the change. It is important to share a copy of the updated plan with the substitute decision-maker, caregiver(s), family, and healthcare providers.
Suggest that the person who is ill chooses someone they trust to speak on their behalf if they can’t or choose not to speak for themselves. This person will work with the doctors and nurses to make decisions and guide the care. The legal term for this person is “substitute decision-maker.”
*Depending on where you live, this person may be given a different title. You can explore resources specific to your province or territory using the link in the resources below.
Note: It is very important that the person who is ill talks to the substitute decision-maker about their wishes for their future healthcare. It is also important to name person in the advance care plan.