Caregiving and the importance of end-of-life care planning
What exactly is advance care planning?
You may have heard of an advance care plan but may not be sure what it is. Advance care planning helps a person decide what their wishes are for end-of-life care. An actual plan communicates those decisions to others. Your wishes can be met if you are unable to speak or communicate for yourself. It also means others (usually family members) don’t have to make these difficult decisions during an already emotional and difficult time. And believe me, family members aren’t always in agreement about end-of-life care.
Who wants to anticipate their death?
I haven’t met anyone yet who wants to create an advance care plan. It means anticipating your death, and details about your care at end of life. Many of us avoid thinking about that and talking about it with those close to us. At the same time, it can be such a relief for everybody when there is an advance care plan. Also, the conversation itself can be an intimate connection.
Imagine (sorry) that your mom or dad, or your partner or spouse, your friend, another family member, is at the end stage of their life. And imagine that they are unable to communicate.
Consider the following questions:
- Do you know whether they would like to be cared for at home, in hospice or in hospital?
- Do you know if they would want or not want certain medical procedures? (for example, CPR, feeding tubes?)
- Do you know what they are most afraid of in terms of the physical process of dying (such as being in pain, not being able to breathe?)
- Do you know what would be meaningful for them at end of life (for example, spiritual guidance, role of family and friends, music, etc.?)
If you don’t have answers to these questions, then it is time to muster up the courage to begin this conversation. It is a brave and loving thing to do.
Five steps to create an advance care plan
- Make it personal
Talk about situations that you and/or the person you are caring for may have experienced with others and ask them how they felt about the decisions made. For example, “Remember when your neighbour, Joe, was admitted to the hospital and had a feeding tube put in. What do you think about that?”
- 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.
It is important to know that the person who is dying will always be given medicine and treatment to relieve unpleasant symptoms such as pain or nausea.
- Help appoint a ‘Substitute Decision Maker’
A Substitute Decision Maker is someone who will make medical decisions if the person you are caring for 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 the person’s behalf. For example, if there are siblings, there may be one who will be better suited given that this will be an emotional and stressful time.
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. The legal requirements regarding the appointment of a Substitute Decision Maker vary across Canada. Consult the list of provincial/territorial resources.
- Write down or record their wishes
Help the person 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 spiritual or religious rituals, and so on. You may want to use a template or workbook to document these wishes. An Advance Care Plan Template or Workbook can help document these wishes.
Consider who else should know about the details of the advance care plan. The primary doctor should have a copy, and perhaps lawyers or other financial and legal professionals. I would also suggest that all family members be aware of the details of the plan. It is a potential minefield, for example, when one or more of the daughters or sons knows and another does not. It also gives family members some time to process emotional reactions.
- 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.
When to do an advance care plan
When is the best time to create an advance care plan? When you are younger and your health is quite good. So, ahem, maybe you want to start by creating your own advance care plan and sharing it with your parents. Wouldn’t that be an interesting conversation?
For more resources, including First Nations Resources, cancer planning toolkits, a glossary, and conversation starters, check out Speak Up Canada
