Sunday, April 1, 2012

Let's Talk About ...

... Dying.

I've been avoiding this ("Let's Talk About Dying") T.E.D. talk for most of this week. (I get a recommended T.E.D. talk delivered to my newsfeed on Facebook everyday.) When I saw the title of this one, I simply couldn't open it. From the write-up, it was clear this talk would be hitting very close to home, as it dealt with end-of-life decisions.

What if, after listening to this, it would become apparent that we'd been making poor decisions? What if we've been doing it all wrong?

The speaker, Peter Saul, has been intimately involved in the dying process of over 4,000 patients from his work in Intensive Care. He is passionate about improving the ways we die. He had something compelling enough to say that T.E.D. let him talk. 

I finally did listen to it this morning. And then I went back to bed for 3 hours.(My capacity to handle things is full up right now.)

Anyway, one of the things he said that is going to stick with me for awhile is this: "Unfortunately, increasing longevity (we all are living longer) means more old age, not more youth." 

In the end, after listening to it, I didn't feel guilty (yay) and I heard what his heart is saying:
... We need to have conversations with the elders in our lives regarding their choices/preferences at the end of their lives. This conversation should be started with this question: "In the event that you became too sick to speak for yourself, who would you like to speak for you?" And then, the follow up question, "Have you spoken to this person about your preferences?"

What he is suggesting is that decisions about dying should be taken from the medical community and put back into the patient's hands. Let the patient decide.

Because I am so close to this subject matter, I am completely too emotional to make a coherent comment about this. But let me tell you this. Making decisions about what someone's end-of-life is going to look like is as overwhelming as the decisions one makes when building a home. I can remember meeting with the builder back when we built our last home together, and picked my wall colors, my floor materials n colors, my tile materials n colors (for backsplashes and tile surrounds), my countertop materials and colors, my door styles and colors, my... well you get the idea. It felt like I made 10,000 decisions. And then I was brought a grout color chart, with 100's of grout colors, and I was to pick a grout for each tiled area. And then I was brought a moulding sample string, with dozens of moulding chips, and I was to choose which wood pieces/combinations were to go in each room, as crown or base. And what color did I want to paint them? It went on and on. 

In the end, I ran away. (To the lake for the rest of the summer.) I told the builder that I had made the big decisions, and I was trusting him AS A PROFESSIONAL home builder to handle all the little stuff because he knew better than I, what mouldings worked best for each room. 

So when we made the original decisions regarding dad's care, it was based on the info we received from the professionals. None of us are savvy with medical procedures. So we trusted the doctors and nurses who have been caring for him. But then, he, of course, being dad, didn't respond as expected. He surprised everyone. 
So new decisions needed to be made. And then, even though we made the big decision, (so to speak) they still relied on us to make the small ones. (Breathing tube? Feeding tube? Antibiotics? IV? Meds? Painkillers? Morphine? Tylenol? Oxygen? Catheter? Food? Vitamins? and so on.)

Even though I'm not the one in dad's case, (mom is), it is HARD being the person responsible for someone else's end-of-life decisions. From my point of view, I would be totally happy to hand it over to trusted, competent professionals. I am knowledgeable about fun photos, family dinners and blogging. I know nothing about the impact of different drug combinations. Is it our (my) responsibility to study it? Learn? Get an honorary degree? Am I just being lazy because I don't want to. People go to school for YEARS to learn this stuff. Am I abdicating my rights as a human if I 'give' the decisions regarding the quality of my end-of-life to a medical professional? 

I don't know. 
I just don't know. 

For alot of people, this will never be an issue. They will pass away in their sleep. Or very suddenly. Not everyone lingers. 

And then? There's the God question. Where does he fit in to all of this? As a Christian, can't I just pray about it, then leave it in His very capable hands? It's all in His timing anyway, right?

I am tired of this topic. 


Three things I'm thankful for:
1. Yesterday (Friday) after work, mom and checked out a nursing home. And uh, decided not to look at any others. This is our first and only choice. It's hard, yo, to picture my dad there. I never, ever imagined him living like this. His life was so terribly 'extreme', a nursing home existence seems too tame for him. But I'm thankful that we have options like this available to us. I'm thankful that we all have peace about this option. 

2. After the nursing home tour, I spent the evening with dad. It's getting harder and harder from me to visit. I'm always afraid. Afraid of what I'm going to be faced with. Afraid of what I will see, hear, smell or experience when I round that corner and enter his room. Afraid of what someone might need me to do. Afraid of seeing dad have difficulty breathing. Afraid that he might die on my watch. All day long I pray for strength and courage until I actually arrive. And on Friday? It was no easier... especially since I'd missed a few days, being with Max. 

And when I rounded the corner and took a step into his room? There was my brother. Holding dad's ankles, while a nurse was trying to get an IV into his foot. Jim looked up, and said to dad, "Hey! Jane's here!" I nodded and took a step back and leaned against the door frame, breathing deeply. I do not do needles well. I thanked God that Jim was there to help the nurse, because there was no way I could've done that. 

(For those looking for a health update re: dad - he keeps ripping out his IVs. And the veins in both his feet have collapsed, so they can no longer put them there. He wouldn't eat for Jule or I, though mom managed to get some pudding and Ensure in to him. For the most part, he keeps his eyes open and looks elsewhere. He wouldn't look at me at all on Friday night, nor did he look at Jule this morning. I chatted with him about stuff the kids are up to, and gave him some news that caught his attention, temporarily, which made me cry, but other than that... he's been pretty unresponsive. We're hoping to get him into Elim Court early next week - and counting on him getting more consistent care once he's settled. (Part of me thinks, he will shut down once he fully realizes he won't be going home. But then the other part of me acknowledges that this will all happen in God's timing, and not one second before.)

3. I'm thankful that today was Saturday and I was free to fall apart. I stayed in pj's all day. And slept whenever I couldn't handle being awake. It's been a tough month, and I suspect that April won't be much easier. I might as well stock up on sleep while I have the opportunity. Sabbath rests are one of God's greatest ideas.


Quite by coincidence (?) or God's great timing (?), this other T.E.D. talk was brought to my attention today. It was given by the author of the book Cutting for Stone, (which I loved so much, I recommended it to our book club). If you've got 20 minutes, I'd recommend reading it. THIS IS THE TYPE OF DOCTORS I WOULD TRUST WITH MY LIFE. A Doctor's Touch. Listen. Now. If you want.

1 comment:

raych said...

Because there's been such a backlash against paternalism in medicine, doctors are more inclined to rely heavily on patient input, and I understand the desire to not be steamrolled by your medical professionals but that time I had The Cancer, it was beyond difficult to get advice on what they thought we should do. They'd lay out our options, and only after we picked one was the surgeon like, Yes, I think that is the wisest course. But beforehand he wouldn't say either way what HE would have done. It added more stress to an already-stressful situation, but it's a fine line to walk between that and too much medical intervention.