How does your care recipient want to live their life?

A caregiver’s guide to advance care planning

While difficult, having an open and honest discussion with your care recipient about their wishes for end-of-life care and medical interventions can give you both peace of mind and help prepare you to make decisions when the time comes. It is about being “decision-ready.”  In a medical setting, treatment decisions tend to happen quickly, and there usually is no time to have a conversation. Being prepared ahead of time can help take a little stress out of an extremely stressful situation.

Dr. Leah Steinberg, a palliative care physician at Mount Sinai Hospital, advises that the focus of advance care conversations should be more about how your care recipient wants to live rather than about dying. Doing so can be both liberating and cathartic.

In an Ontario Caregiver Organization webinar, Dr. Steinberg cites an article written by Dr. Oliver Sacks, a well-known neurologist, who had terminal cancer. Dr. Sacks said, “It is up to me now to choose how to live out the months that remain to me.”

When thinking of advance care planning, most people think about medical decisions like resuscitation and intubation. However, it is challenging to make those kinds of decisions in advance, without the context of the moment. Your care recipient may feel differently about certain interventions now than they might later.

Dr. Jeff Myers, a palliative medicine physician and co-presenter at the OCO webinar, echoes Dr. Steinberg’s viewpoint. “It’s not about treatments, and it’s not about completing forms,” says Dr. Meyers. Advance care planning is about clearly understanding your care recipient’s views so that when you need to make decisions on their behalf, you are informed and prepared. To help you have this important discussion with your care recipient, Dr. Meyer’s suggests the following three steps:

1. Reflection – your care recipient should start by reflecting on their values and what is important to them. What makes life worth living? What kind of living would they accept? What trade-offs would they make?
2. Conversation – your care recipient should share their reflections with you (and other family members if they choose). The conversation should include their answers to specific questions, including:
   • What do I value most in terms of my mental and physical health?
     • Being able to live independently?
     • Being able to recognize others?
     • Being able to communicate with others?
     • Being able to live as long as possible?
   • What would make prolonging life unacceptable for me?
     • Not being able to communicate with those around me?
     • Being kept alive with machines?
     • Not having control of my bodily functions?
   • When I think about death, is there anything I worry about happening to me?
     • Struggling to breathe?
     • Being in pain?
     • Being alone?
     • Losing my dignity (and what that would entail)?
   • When nearing death, what would make it peaceful for me?
     • Having my family and friends nearby?
     • Dying at home?
     • Dying somewhere other than home?
     • Having spiritual rituals performed?
     • Not being a burden to my family?
3. Review over time – This is not a one-time conversation. How the person you are caring for feels today may change over time, as their situation changes. Their views on what they can tolerate or are willing to accept may also vary. It is important to revisit and refresh reflections and conversations.

If it is easier, your care recipient can write down their thoughts and wishes and provide them to you as a guide. However, it is important to note that written wishes are not considered consent in a medical situation. This means that if a person is unable to express their consent, a substitute decision-maker must do so.

Taking the time to reflect on how one wants to live can be very empowering. Oliver Sacks, the neurologist Dr. Steinberg quoted who had terminal cancer, wrote: I want and hope in the time that remains to deepen my friendships, to say farewell to those I love… and to achieve new levels of understanding and insight.