As a family caregiver, you may have heard of advance care planning, but may not be sure what it is.
An advance care plan is the best way to ensure that a person's wishes on the care they receive are honoured at end of life.
Advance care planning is a process of sensitive conversations with the person in your care to ensure that their wishes regarding the care they receive are honoured at the end of life. Creating an advance care plan is a way of ensuring that their needs and wishes are met before an illness takes away their ability to communicate them to you.
As a caregiver, here are five important steps to creating an advance care plan together with the person in your care.
1. Explore their values, beliefs and views
Begin the discussion of an advance care plan by clarifying the person’s values, beliefs, and understanding about end-of-life care and specific medical procedures.
You may want to talk about situations that they have experienced with others and how they felt about the treatment.
Here are several questions about end-of-life care to help start the conversation:
- If possible, would you prefer to be at home, in a hospice, or in the hospital?
- Would you want or not want certain medical procedures (e.g: CPR, feeding tubes)?
- Do you have any fears about dying (e.g.: being in pain, not being able to breathe)?
- What would be meaningful at the end of life (e.g.: family/friends nearby, music playing)?
2. Discuss end-of-life palliative care options and medical procedures
There are many different medical procedures and types of equipment that might be used at the end of life such as a ventilator, kidney dialysis, a feeding tube, or CPR. Some people may want these procedures to help extend their life while others may not.
As an informed caregiver you can remind the person that their health care provider will always give medicine and treatment to help relieve unpleasant symptoms such as pain or nausea. Tip: Consult the Glossary of advance care plan definitions and terms by visiting www.advancecareplanning.ca to help you decide what’s best.
3. Help appoint a Substitute Decision Maker
A Substitute Decision Maker is someone who will make medical decisions if the person receiving care is unable to make them on their own.
This is something that needs to be part of the advance care plan and needs to be carefully thought through before appointing someone. The person chosen should be the one who is the most capable of honouring and making medical decisions on behalf of the person receiving care. The Substitute Decision Maker may be a spouse, a trusted family member, or a good friend.
In Canada, this person will be the Substitute Decision Maker or the Medical Proxy, Health Representative or Agent, or Power of Attorney for Personal Care depending on your province or territory.
Since the legal requirements regarding the appointment of a Substitute Decision Maker vary across Canada you should consult the list of provincial/territorial resources links for more information.
4. Write down or record their wishes
Help the person you’re caring for to write down or make a recording (or video) talking about what they would want if they were at the end of life.
Also, document any other wishes for care at the end of life such as dying at home, receiving hospice/palliative care, having music playing, performing specific religious rituals, and so on.
An Advance Care Plan Template or Workbook can help document these wishes. See “Making Your Plan” at www.advancecareplanning.ca for resources.
As their caregiver, you should also get consent to inform others of the wishes outlined in the Advance Care Plan such as the health care professionals involved with care, lawyers, financial and legal professionals, and other family members or friends.
It’s a good idea to provide the primary doctor with a copy of the advance care plan.
5. Review the advance care plan document regularly
Just as life changes, so may advance life and palliative care wishes. Talk about the end-of-life advance care plan from time to time to see if any components need to be updated or if there are any new concerns to consider. Then be sure to share these changes with the person’s health care team or Palliative Care Team.
During each advance care plan review, it is also important to confirm that the substitute decision maker is still able to perform that duty.
At Elizz, we provide caregiver support for you and home care services for those who depend on you. Elizz is a Canadian company powered by Saint Elizabeth, a national not-for-profit health care organization that has been caring for Canadians since 1908.