How do I open the discussion of these delicate End of Life topics with my loved ones so that they understand my decisions and intent?
Fortunately, there are several organizations dedicated to helping with this question. Excellent guidance, including videos, can be found at the National Hospice and Palliative Care Organization’s CaringInfo website at the ‘Communicate with Your Loved Ones’ page. They also include tips on dealing with loved ones you can predict may make things difficult on your Proxy.
Examples of what you might consider sharing include any combination of:
‘I’ve been doing some planning about how I’d like to be cared for near the end of my life. I’ve appointed _______ as my Proxy, and have communicated to him/her as well as with my physician, Dr. ___________ what my specific desires are if I’m not able to make my own decisions. If those unfortunate events unfold, please understand that I’ve placed my full trust in them and I ask that you give them your full support.’
OR – The statement above, plus; ‘In general, my guidance to them is __________’. This could include things like ‘I’d prefer to die at home if possible’, or ‘If I get permanent dementia like Grandma had, I want …’
OR – All of the above, plus provide them will full copies of all or a selected subset of your documents.
Consider having someone videotape you talking about the decisions and desires you’ve documented in your Advance Directive. This can either be the actual conversation you have with your loved ones present, or it can be separate, but it’s important that the message you deliver be consistent in detail with your Advance Directive. The advantage of a video is that it captures your tone, inflection, and body language that can help your Proxy and loved ones really understand the meaning behind your words. It can also be an extremely helpful reminder of what you communicate in person. From the position of a loved one, the message you’re communicating during this conversation can be very hard to hear and absorb. If you were to quiz three of your loved ones one hour after the conversation, it wouldn’t be surprising to find major discrepancies in what each of the three thought they heard. Imagine how those discrepancies could lead to misunderstandings years later. A video can be revisited later, including when your desires most need to be clearly understood. This can be extremely helpful to your Proxy and can help prevent misunderstandings amongst the rest of your loved ones. Any hand held smartphone or tablet can make a video of adequate quality.
In your discussion with your Proxy, make sure they really get you. What’s important to you. The more detail you discuss the more comfortable they’ll be if they’re ever called on to make a decision on your behalf about something that’s not explicit in your Advance Directive.
Remember: We coach, support, educate, and empower. We illuminate options you may not have known you had. But we don't decide what's right for you in your unique circumstances; only you can do that. And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.