Don’t Wait For A Time of Need To Know What You Need

This recent NY  Times article really had me thinking, not only because of what I have faced in my past, but also due to what is front of me…but it isn’t only me who should be taking a hard look at this.

The dying process as far as medical decision-making is not a comfortable subject for many. I understand this. I touch on death lightly when speaking about the realities of lung transplant survival statistics as well as the hard truth of end-stage lung disease in this past blog post. As well as calling attention to how many losses I’ve suffered at the hands of LAM, TSC, rare disease & other diseases like cancer, life & mortality in general to help process the harsh reality in a few others. It’s part of how I choose to deal with it & process it for myself . Others may feel or deal with it differently. It’s highly personal.  I won’t touch on that here.

What I’m talking about is a harder reality, but so much more universal. Proper perspective can only be maintained on this subject when reflecting on it prior to actually being in the situation where the decisions need to be enforced.

What I’m touching on now is the importance of preparing documents that many procrastinate on & are intimidated by for a variety of reasons. Doing so underestimates & undermines the importance of them.  So many people seem to think they don’t need it, or never will. They don’t always look at these choices until they are placed in a precarious situation. Or if they have children or others they fear of leaving in limbo.  Or worse yet, something untoward happens to a friend or loved one who did not have clear direction.  There’s always an impetus to force the conversation because people feel they are invincible & immortal to a degree & will always able to speak for themselves. Until they can’t – temporarily or permanently.

The subject I’m addressing now is the need for advanced directives, a health care proxy, living will, or what other terms you use to define them. This is anything but an “old-age” decision though it’s importance is usually stressed to that generation. I disagree with this.

Death literacy & medical decision-making literacy are just as important or more so than healthcare literacy & self-advocacy. Yet, there’s no “formal education” on any of these subjects? Why? We teach sexual education & driver’s education. This should not be any different to teach to others so they can at least to arrive at a basic framework. From there, people can outline their own decisions for themselves.

I realized the necessity of this early on when my health continued to fail when I was still relatively young (mid-late 20s/early 30s). Yet I struggled because it felt that there was a discussion & education around a lot of subjects, but not this one in particular.  What did exist was always targeted as “estate planning” or some of other term I couldn’t immediately relate to. I felt that maybe the guidance in those sessions related more to retirement assets & things that either married people or older people faced with dividing property & assets. I didn’t feel it related to me as a single person just laying things out simply & easily with no fuss.

I finally did bite the bullet on getting my directives, wills, & proxies legally executed this summer with the help of a friend who was a professional, but had also walked a similar health path to mine. To hash things out with someone who clearly understood everything behind it from both sides of the fence was such a relief & gift.  I’m lucky in that regard, I truly felt that made it so much easier.

I was glad I took the time to properly lay things out with this friend because he really understood the difficulties & necessity of these decisions from all angles in both a legal & personal sense. I did have questions but was able to toss them around to get clarification which helped as well.

I was also fortunate to have a few reliable & constant friends I could feel comfortable naming to enforce those wishes because I knew they cared enough to honor my decisions if I couldn’t vocalize them myself.  It was imperative for me to do this. (I am an only child on top of being a single woman. Doesn’t mean I don’t have support, but I can count on one hand the people I would leave such important decisions in the hands of. Probably another factor that indirectly aided my procrastination.)

In my mind, I reached out to get ready for this the second my suspicions concerning my breathing changes were confirmed. I finally through experience or a few years of age, finally understood the necessity.

My parents & are older now & live far away, some of these decisions may not be able to wait, therefore they might make good alternates but it’s not the same as reliable trusted “go-to” who really knows me; and all of me; in both sickness & health as a sister & friend & helps me face these challenges daily.

At 38, this was easier for me to map out now than when I was closer to 30, though I needed it just as much back then with the health issues I was facing.  I had been through too much at that time to have a firm grasp on my wishes myself.  Much less articulate it to others so it was a struggle for me to start the process. I also tried to do it on my own, which to me was overwhelming because it left more questions than answers. These standard documents seemed alien, too static, & non-specific to reflect how I felt. I wasn’t sure even how to complete them (how thorough or specific I needed to be in doing so.)

I felt such a fear of making a “wrong choice” & having it documented as if set in stone. This is why, if one can afford trusted counsel it helps. Even just for a review of what you’ve partially drafted out for yourself or to toss around questions & concerns with.

One can do it online by themselves, but I found it harder. (Here’s a helpful article for perspective on the pitfalls of the DIY approach.)

But I later realized there is no wrong decision on these directives unless you second guess yourself & your ability to make your own choices.  I think that’s what made it more difficult for me to have it laid out earlier, even though I saw the necessity & need.

I had the wishes drafted to a point.  Yet I never executed them because I had never been able to examine or explore what I really felt inside my heart about any of these decisions.

It was a door that I know my doctors would have been more than happy to open & walk through with me, but I had no idea where to start the key conversation to broach the subject with them.

What happens to you physically when you’re given a feeding tube? What happens if you decide against a DNR? What does that lead to? How do these choices impact your care & the course of your disease? Do they give you quality-of-life or do they prolong suffering & the inevitable?

I knew definitions of procedures & interventions outlined in advanced directives, but I didn’t have any awareness of how I felt about them in relation to my own situation. While it’s important to be smart & literate when understanding the health system & the medical terms & procedures that are part of it, it’s another to know which ones are comfortable & right for me in critical moments. Or truly what they mean outside just a standard definition online or in a book. Or just a stock photo of a particular machine.

This became crystal clear after my car accident earlier this month.  I was recklessly hit & did my best to avoid the accident, but had I not been able to see what was going on to avoid it; fact is, I would not be here.  My will & spirit might have fought to stay (as that’s in my blood); but my best friend would have been left with some hard decisions but I guaranteed she would have not been left to make them alone or guess what I might have wanted. This is because I cared enough to lay them out ahead of time.

She would have had clear direction because once the transplant process started, I made her aware of what I had mapped out earlier. Even before I knew if I would need a transplant for sure. It was not easy for either one of us to admit we were both scared of what could happen with the transplant or that I was nearing the end of my life potentially without it; but we both cared enough about each other & our places in each other’s lives to face a bit of discomfort & have a conversation about how we were both going to face this together. In order to do that, she needed to know how I felt outside of words. She needed a documented roadmap that gives her the ability & authority to stand in my place & make sure those wishes are followed.

Now, that gives me comfort; because what I went through was hard; but luckily for the most part I have been able to advocate for myself & make decisions in both the accident, my evaluation & upcoming listing & in past health crises.  Yet, if something uglier would have unexpectedly presented itself at any point; both of us now have vital reinforcement & support. These documents serve as an additional voice to be sure my original voice was heard with her validating & enforcing echo.

Things can happen at any time, an accident, a disaster, an unfortunate circumstance. Failing health or not, everyone should outline these wishes, decide for themselves what they are; & then discuss them with those they love – whether that be friends or family. Preferably this is done with a clear head & clear heart without imminent threats to muddy the waters.

Towards the end of life, if there is no one to fall back on about communicating or enforcing those wishes at bedside or elsewhere,  if one has bravely outlined them beforehand, there will be a document that will be a guide to a more peaceful end. Yet, getting to that peaceful end also depends on the person being strong & aware enough of outlining a clear path & vision of that the end.  That vision comes through hard but necessary examination.