Tuesday, April 16, 2013

Give a Gift to Your Loved Ones: Make Your Wishes Known

Tulips, Conservatory Garden, Central Park, NYC
Today is National Health Care Decisions Day (NHDD).  NHDD was established to raise awareness of the importance of advance care planning and as a moment in time to encourage all of us to converse with our families and loved ones about what we would want if we are unable to make decisions for ourselves.

The best advance care planning includes conversations about what we would want and the folks over at NHDD have put together a few great resources that can help you get those conversations going:


The Conversation Project

If you are in need of an advance directive form, Caring Connections offers state-specific forms as well as a slew of other resources that can help.

Because I think one of the of the things that keeps us from these conversations and this planning is how overly complicated it can all seem, I've pointed to just a few key resources to help get you started.  There are more organizations out there that have resources and these can be found on the National Health Care Decisions Day Website.

If you are reading my road map for my surrogates below and saying to yourself -- that's me, that's what I would want -- it's yours for the taking. It's a gift we give our loved ones when we make our wishes known -- it matters not one whit whether its a conversation or a written document.  It just matters that we do it and that, in the end, is what NHDD is all about -- helping us to develop our own advance care plans by pointing us to the tools and resources fwe need and highlighting the importance of making a plan.

What if my family doesn't talk about such things you might be asking? 
That about sums my family up so I blogged a road map for my sister Mary (who is my surrogate) to follow last year in Making Decisions for Me. It's a long post reporting on all the reading I had done on Advance Directives and Medical Orders for Life Sustaining Treatment (MOLST).
Tulips, Conservatory Garden, Central Park, NYC

It's a year later and my road map and the underlying philosophy still ring true to me.  Having recently spent some time with my Mom in the hospital, I know that there are going to be a lot of decisions -- some big and some small.  There are going to be consent forms that Mary will need to pay close attention to given that consent to do a larger intervention might be embedded in a form should the smaller one go awry.  A small learning which lead to an additional comment about consent forms that reminds Mary to pay close attention to these so she understands what she is agreeing to before signing off on a procedure no matter how small.

I remain convinced that I shouldn't try to control these decisions by spelling out what I would want on an advanced directive form.  The below is an addendum to my Advance Care Directive form -- a gift to my sister should she ever need to serve as my proxy.  

Who You Are

  • You are my advocate and you are most definitely the person who has the final say in the decision.  Make that clear from the get go!  Collaborative decision-making in tandem with my doctor is OK -- but you know what I would want better than she ever could.  
    Tulips, Conservatory Garden, Central Park, NYC
  • You will not let anyone rush you through a conversation -- you'll make sure all your questions are answered.
  • You'll pay close attention to consent forms and make sure you understand what you are consenting too before signing off on a procedure no matter how small that procedure is.
  • You'll make sure I'm getting the best care possible -- you'll know who my doctors are and where they trained (and for sure you'll know if they are done with training!).
  • You are someone I trust to do whatever needs to be done -- and that includes letting me go gently into the night if that is the right decision.  And by "right", I mean your right -- others can advise you but the decision is yours to make.

What You Know about Me
    Tulips, Conservatory Garden, Central Park, NYC
  • You know that quality of life is more important to me than length of life.
  • You know that I have no religious or moral beliefs that are relevant to decisions about life-sustaining treatments.  You should make those decisions based solely on my medical condition and my long-term prognosis.
  • You know how I feel about artificial nutrition and hydration.  I think it's an OK short-term solution if you are "waiting and seeing" if I'll recover.  Please don't feed and water me if I'm in a persistent vegetative state or if scans show no activity in a substantial portion of my brain.
  • You that I would ask for prognosis, weigh all the facts, make a decision, and then stick to that decision.
  • You know that I don't believe in miracles.
  • You know that I firmly believe that there are no wrong decisions.
  • You know that I am not afraid of living with disability nor am I afraid of dying.

It’s About My Long-term Prognosis
  • Get the facts and that all important “prognosis” from the doctor (or doctors) overseeing my care.  
  • Ask about how I will physically function.   Ask if I’ll have all of my marbles?  If some of my marbles, ask which ones and what that means in terms of my ability to function.
  • Weigh those answers within the context of what you know about me and make your decisions accordingly.

And my final words of wisdom for Mary?  
I still want her to  make time time for herself -- being some one's proxy is not an easy task.  I know, I've been there and done that.   Most of all, she needs to know that I am going to be AOK with whatever decisions she makes.  I trust her.

Tulips, Conservatory Garden, Central Park, NYC

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