Making Decisions for Me

Me in Tofino (by the B)

Have you ever imagined a time when you are unable to make decisions for yourself?  Thought about who will watch out for you if you need medical care? Who knows how you would make decisions?  What data would you want?  Who knows what you think about life-prolonging treatments?  Who knows how you feel about dying?  Who knows you?

Have you looked at that moment through the eyes of relatives and loved ones who may have no – or every -- legal authority to make decisions for you?  Gathered around you as you lie in a coma or nervously waiting outside the operating room as surgeons struggle to save your life?  Have you thought about the range of decisions that might need to be made for you?  Each decision likely leading to another decision -- with sadness and grief permeating them all. 

We don’t like thinking about those types of things – at least my family doesn’t and I wouldn’t be surprised if yours didn’t as well.  You might, like me, have an advance directive gathering dust in some corner of your home with another copy in the hands of your proxy and yet another copy stapled into a chart at a doctor you haven’t seen in over fifteen years because you’ve moved on and so have they.  You may have, as someone recently told me, completed it as a part of writing your will and mentally checked it off your to do list.  Health Care Proxy/Advance Care Directive.  Done.

Ginkgo Relief (Central Park)

A while ago, I wrote about where I wanted my final resting place to be – scattered over the ocean or resting in a bucolic cemetery overlooking the rolling hills in Washington, CT.   It’s been on my proverbial to do list to revisit that dusty old proxy of mine.  Give some consideration to what I would want done in the event of serious illness (or an accident) that leaves me unable to make my own decisions.  It is a weighty task.

You may recall the death panel debate during health reform – that was all about engaging in advance care planning in collaboration with your health care provider.  The benefit in question was framed as being about government panels making treatment decisions for you and me.  In point of fact, the benefit was all about you (or me) having a conversation (or conversations) with our health care providers about what we would want in the event of serious illness.   Thoughtful conversations that need time to complete.  Conversations that will help guide your care if you are unable to guide it yourself.

Personally, I think of it as a conversation about how I would want to live rather than a conversation about how I would want to die.  I know how I want to die – quickly, without a long decline into disability and dementia.  I also know that that kind of death is hard to come by.  Simply put, in this day and age, we can keep ourselves alive for a very long time.   In light of that, thinking about what we would want in terms of life-sustaining treatment is a good thing. 

Hydrangea (Conservatory Garden, Central Park)

Yes, I have a proxy (somewhere) that gives my sister the legal right to make decisions for me and on which all the required boxes – and statements – have been dutifully completed.  I don’t think it does enough in terms of telling her enough about how I want her to be when the time comes so I revisited it on a recent cross-country flight.

Before leaving home, I had printed out the NY’s Medical Orders for Life sustaining Treatment (MOLST) form and a health care proxy form (as well as instructions for both).  On MOLST, I don’t quite fit the recommendation that it is generally for patients with life threatening illness.  I have a couple of minor chronic conditions (arthritic big toe, acid reflux, and a few other things) but nothing really serious and certainly nothing life-threatening. Plus, my physician wasn’t around (I was on a plane after all) and I would definitely need to have a conversation with him so he could complete this form if we decide that it should be a part of my medical record

Although it may not be appropriate to complete the MOLST form right now, it was certainly helpful to review it.  I learned a lot.  Specifically, my sister Mary is going to need to provide clear and convincing evidence that I “held a firm and settled commitment to the withholding of life-sustaining treatment in the event of circumstances like (my) current medical condition.”  That evidence could be a living will or it could be verbal -- consideration should be given to the circumstances under which such statements were made, and to whom.  There’s some additional criteria that MOLST suggests be used to determine my wishes (in the event I am no longer able to speak my mind: 

Ethereal

• Whether the statements were general or specific;
• Whether the statements were about specific circumstances (for example, terminal illness, persistent vegetative state) that are similar to the patient’s current medical condition;
• The intensity, frequency, consistency, and seriousness of such statements;
• Whether the statements tended to show that the patient held a firm and settled commitment to certain treatment decisions under circumstances like those presented;
•  Whether the strength and durability of the patient’s religious and moral beliefs make a more recent change of heart unlikely; and
• Whether the statements were made to one person only or to more than one person close to the patient.

Next, I turned to reviewing NY state instructions and form for identifying a health care proxy.   From that exercise, I learned there are a couple of things I’ll want to do: 

• Note that my proxy knows my wishes regarding artificial nutrition and hydration on the form (VERY important)
• Choose a second proxy on the off chance my sister is unavailable, unable, or unwilling to make decisions for me.
• Check in with both my sister and my "second" to make sure they are willing to serve as my proxy.

A few concerns came to mind after all this “pre-reading."  First, the MOLST criteria for clear and convincing evidence sound like I should be talking about these issues a lot.  Second, and perhaps more important, both seem to want a lot of specificity. What do I mean by specificity, you might ask? Specificity in terms of whether I’d want a blood transfusion, what I would want done if I’m brain dead with no hope for recovery -- those are just two of the 11 examples that the NY state form provides.

Tulips in Bloom (Conservatory Garden)

It's quite daunting to think about and I am not sure I could outline every possible scenario in a way that would be a road map for Mary (and that second proxy once I determine who that should be).  There are likely going to be a lot of decisions and a lot of nuances to those decisions.  I am sure they will start small and build to a crescendo.  I am quite sure that I shouldn’t try to control those decisions by setting forth a lot of instructions.  Isn’t one of the main points in choosing a proxy that you trust that person to do whatever is in your best interests?   

I'll fill the form out (grumble, grumble) but here is what I really think the person making decisions for me when I can't make them myself needs to know.

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.  
• You will not let anyone rush you through a conversation -- you'll make sure all your questions are answered.
• 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

A Favorite Ginkgo (Central Park)

• 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.

Finally, be sure to make time time for yourself -- being some one's proxy is not an easy task.  I know, I've been there and done that.   Most of all, know that I am going to be AOK with whatever decisions you make.  I trust you.

Coronado Waves