Six Months In: Thoughts About Active Dying

"Life has many mysteries, but there is nothing comparable to death"

Tomorrow marks sixth months since my mother's death. The six month mark is especially difficult for spouses, so I'll be checking in on dad. For me, it hasn't been that rough (yet), because I've been so focused on other issues. But, that grieving timeline does affect me; otherwise, I wouldn't have woken with a start the other night thinking I had forgotten to flush mom's biliary catheter.

Those last three days before mom's death were breathtaking for me. The last coherent thing she did before she settled into her hospital bed in the living room for the last time was to pick out her urn. She dressed herself (with a little help), and held court with the funeral directors for about two hours. Then, she returned to her nightclothes and settled in for what appeared to be a 24-hour coma.

But, perhaps it wasn't a coma after all. I'm still learning about "active dying," or the end our "life in form," and how dying is a very active part of our lives. Death Cafe shared an interesting article this morning on Facebook, and I was thrilled to read the information contained in this piece about active dying. This article didn't focus on the usual 'list' of "are they dying yet" tips. Instead, this article speaks from a space that is both spiritual and physical. The third paragraph caught my attention immediately:

Often the time of death is preceded by an apparent coma, in which many things happen below conscious awareness. It is a great challenge to develop the spiritual guidance and inspiration, the vision and knowledge that can speak of the peace in surrender, and guide each other there.

Oh, that paragraph took me back to that moment six months ago, when I knew that mom heard everything that was going on around her. Although she seemed 'dead to the world,' she was active inside...her body was rapidly breaking down, and her mind was somewhere I couldn't touch. But, I knew she was still with me. She validated my assumption by becoming more communicative the day before she died, and by affirming she heard everything by answering some of my questions.

The article leans into Buddhism, and my mother was a deeply devout Christian. But, she often listened to my brother's Buddhist thoughts on spirituality, and she liked them. I think she would have enjoyed this article in another space and time, including its focus on metaphysical changes. Yes, metaphysical...the author is answering the questions, "what is ultimately there," and "what it is like."

If I take this article to heart, however, I'd have to laugh at the efforts that dad and I made to open the doors for her to hear the birds and to talk to her about the imaginary rabbits and turtles that we saw in the yard. According to the article, mom really wasn't aware of our efforts at the end...

During the period of the near-death reflex, the mind-body also experiences the release of beta-endorphins and other neuropeptides. The inner experience is a profound relaxation of the entire body, so profound that any awareness of the outside world disappears.

Ah, so. Dad and I were playing out those roles for ourselves. That's fine, too.

I know that I never would have remembered the information in this article while mom was alive. I was too concerned with her moment-to-moment living conditions. But now, looking back at those three days before her actual death, this article speaks to me like no other words have to this point.

For that revelation, I'm grateful.

Eliminating Jaundice: The Bile Duct Catheter

A jaundiced patient.

Cholangiocarcinoma, or cancer that begins in the bile duct, is rarely detected until a patient becomes jaundiced. That's because the cancer finally has blocked or destroyed the bile duct. The bile duct is a 4"-5" tube that carries bile from the liver to the small intestine. Really, it's all a tad more complicated than this simple explanation; but, when you lose the function of your bile duct, all that matters is getting that bile out of your system and into your small intestine so you can avoid becoming or remaining jaundiced.

Once diagnosed with cholangiocarcinoma, the attending surgeon might want to try a number of methods to move that bile from the liver to the small intestine, especially if surgery isn't indicated.

One way to temporarily bypass a dysfunctional bile duct is with a biliary catheter, or bile duct catheter or stent. This procedure may be done as part of a cholangiography procedure such as PTC (Percutaneous Transhepatic Cholangiography) or ERCP (Endoscopic Retrograde CholangioPancreatography).

PTC is the ability to insert a catheter via a needle into the liver and, hopefully, through the bile duct and then into the small intestine. ERCP is the same procedure, only done orally. For my mother, the oral method didn't work, as her bile duct was totally blocked, and the only way to insert a biliary catheter in her case was surgically -- the third method. NOTE: Only a small number of bile duct cancers are discovered before they have spread too far to be completely removed by surgery.

So, on the day that she was to have the Whipple surgery, the surgeon couldn't bypass her bile duct by surgically attaching mom's small intestine directly to the liver, because mom's cancer was too widespread (one option for a missing-in-action bile duct). He instead inserted a bile duct catheter that worked for mom for the first time in six weeks.

But, we were sorely unprepared for all the work we would commit to over the next eighteen months with this temporary procedure. And, it is designed to be temporary, or palliative. In other words, the this type of catheter was never designed to replace the bile duct on a permanent basis. The catheter needs to be replaced every four to six weeks, otherwise, the risk of infection escalates. We learned about this infection, which was just one part of the whole bag of symptoms that we needed to watch during my mother's illness.

This catheter extends outside the body and sometimes attaches to a bag worn outside the body as well. This bag collects the bile if the procedure wasn't designed to dump the bile straight from the liver into the small intestine. We learned later that sometimes mom had to wear a bag for the first 24 hours after a catheter change, simply until the catheter began to work as designed -- to suck the bile from the liver into its many tiny holes and carry the bile to the small intestine. Then, we could "cap off" the catheter on the outside and remove the bag, which was a small comfort to mom's comfort as time wore on.

We also learned, after our first experience, that it is imperative to keep the catheter flushed once, if not twice, daily with a saline solution. This flush helps to keep the fluids moving in the catheter and helps to prevent infection. As mom's disease progressed, we ended up flushing that catheter three times per day as her resistance to infection became lower and lower.

The interesting part about our dear bile duct catheters is that, when mom was first diagnosed, only a handful of teaching hospitals throughout the country knew how to conduct this procedure. Within the 1.5 years of her illness, we found that numerous hospitals could handle the procedure. But, not one of them would conduct it the same way, we learned. Not all Internal Radiology (IR) departments study under the same teachers.

But, that's another story.

"Jaundice08" by James Heilman, MD - Own work. Licensed under Creative Commons Attribution 3.0 via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Jaundice08.jpg#mediaviewer/File:Jaundice08.jpg