Last October I heard myself raising my voice at my elderly mother.
It was not at all how I pictured a conversation about her end-of-life wishes.
But my mother was almost stone-deaf and there was little else I could do.
And yet it was a tender conversation. We laughed, got emotional, got focused, and got deep. We looked at what she valued in life and what she wanted to happen if she could no longer participate in her care decisions. By the time we said it all, she knew very clearly what she wanted to include in her Advance Care Directive.
This was her gift to me. There was no need to second guess what she might have preferred and soon her entire network of support was all in on it as well. A few weeks later she passed away at home, in her bed, with only comfort care and none of the invasive medical treatments.
Just like she wanted it to be.
We focus so much about living. Modern medicine sometimes leads us to believe, unreasonably, that death is optional. But mostly, death is simply part of life, not a medical failure.
Imagine this: If you became very sick, would you feel strongly about what type of health care you may want or not want?
And if you became very, very sick; too ill to make decisions about your healthcare, who would you trust to speak on your behalf and make decisions that are likely to change your life?
(You don’t have to wait for old age and dementia to set in; medical emergencies can happen to anyone.)
Without advance directives, these decisions will be made on your behalf by well-meaning people whose views won’t necessarily reflect who you are, how you want to live, and what you value most about living.
So, if making your own choices may be important to your way of being, why would you hand off these personal decisions to others?
“But, wait a minute!!“ – You may be saying – “I have no idea how to even begin a conversation like this with myself, or worse, with people I care for. Who wants to talk about ‘pulling the plug’ or ‘intubation’; I know nothing about medical treatments; and to be honest, I don’t even want to think about it! Just shoot me…”
True. Not everyone would be as open as my mother was for such a conversation, though most people report feeling great relief after having one.
It is easier to enter into a conversation about what’s important to you, than into a distressing and overwhelming conversation about invasive medical interventions. (If you find it hard to start one, check out this 1-minute video and The conversation Project for helpful advice).
Here are the 3 steps you could begin with:
Because no one can anticipate all medical situations, it is important that you fully express your unique values & desires as they relate to end-of-life preferred care.
How many different ways could you complete this sentence?
“When I think about the end of my life, what matters to me is . . .”
When it comes to what makes life unbearable, each person draws the line in a different place. Some people will want to continue any aggressive treatment till the last minute, while others, as did my mother, would opt for comfort care and closure.
You’d need to document your preferences in 3 ways:
- Living Will – outlines your preferences for life-sustaining treatments.
- Durable Power of Attorney for Health Care – gives your agent, who must be familiar with your values and wishes, the legal authority to make decisions on your medical treatments.
- Other advance care planning documents – DNR, POLST, organ donation, dementia directives and support, LGBTQ support, instructions for feeding & drinking, and others.
Check with your state for specific legal guidelines. There’s no one-size-fits-all. For my own advance directive, I considered as many circumstances I could think of while still keeping it easily understood.
Advance care planning is a lot more than a mere form filling task to tick off your to-do list. Beyond storing all the documents in a single and easy to find location, speak about your values, life principles, and preferences with the people you trust and with those who will advocate for you so they can act on your behalf if you are unable to.
When’s a good time to start?
Creating an advance directive is a good idea at any age. We are never too young or too healthy to begin. You might think of it as a living document—one that you can review and adjust as your situation changes because of new information (such as divorce, relocation, new job, change to your health, etc.), or simply reaching your next birthday milestone.
And the best time to create an advance directive is before you need one.
If you want to start your own process of guided reflection and action, contact me here for more information.