Simply Retrospect

Things I wish I knew before I even knew that I should have known them…could this be the case for you too?

Renal Failure

It was around 2007/2008 when my grandfather learned that he had chronic kidney disease (CKD). It was in the early stages and was being managed by diet and other lifestyle changes. Eventually, he needed a medication to help his kidneys be able to manage and we were delighted when his kidney function was well enough to maintain without the medication. This was a good time.

My grandpa was the strongest and best man I have evern known. I was in complete utter shock when in April of 2022 he finally succumbed to renal failure. I thought that this was impossible. He couldn’t possibly die, nothing could take my grandpa out. Unfortunately, he did, he died. I was there.

Death is an inevitability that none of us can escape.

I remember very clearly when I was told he had “days to weeks to live”. The medical team asked if we would take him home to home hospice as there was nothing more they could do. They weren’t sure how long (days to weeks), but his kidneys were not going to get better, he was 94 years old so was dialysis really an option? Or would it prove to be just more unnecessary suffering? I am still not sure what the answer is for this.

I wanted to understand:

1. What do you mean there is nothing more you can do?

2. What do you mean HOSPICE?

3. I want to know about the pros and cons for dialysis. Is there really nothing more you can do? Do I trust that conclusion?

Unfortunately, during the course of the care of my grandpa received over the years I have run into medical professionals who have the bias that “well he has lived a full life”, “he is 85”, “he is 89” and now “he is 94”.

One fundamental question I have is: Who is the person who gets to say that someone has lived a full life? What kind of authority do these people think they have? Or is it audacity? There have been many close calls in my grandfathers life where this was said. This was said five years ago, ten years ago and fifteen years ago.

When I myself was in the hospital, they asked me if I wanted to decline or accept a DNR (this was after the discussion of agreeing to a DNR for my grandfather at a different medical facility). I asked, “what makes me qualified to decline a DNR?”. The doctor, “well you are young (age 44) and relatively healthy”. So does that mean that if I were a little older and had a few more conditions my viability, my rating of declining a DNR may be in jeopardy? I know that at 94 with the conditions my grandpa had that a DNR was the right thing to do, although it was painful. Where is the line? Is there a line? Or do we succumb to the inherent biases that we all have, but in particular the biases of the medical professionals that are treating us? I know we have to choose to say we are going to do a DNR, however, how much do the medical professionals own biases affect patient response to this? How much do they influence? They are in an influential role, are they not?

Back to my questions for the medical professionals,

1. What do you mean there is nothing more you can do? 2. What do you mean HOSPICE? 3. I want to know about the pros and cons for dialysis.

1. Medical Inventions: It was not possible for my grandpa to get any more medical interventions as he had as I stated before other medical variables. He had congestive heart failure, prostate cancer (that was not caught in a good time), and apparently bladder cancer that we learned about during his final days. Given his heart could not withstand surgeries, and given his kidneys could not withstand certain substances (chemicals, medicines, etc) there was really not much they could do.
2. Hospice: Well there was the option for hospice, where your loved one goes to a facility and paid staff take care of them. Also due to COVID restrictions at the time, visiting would be limited. There was also an option for a hospice home, but you needed to be dying “right now” to get there, and then there was the home option (this was the one that was “pushed”). My grandpa had made it clear over the years that he never wanted to be in a home where he would be dependent on anyone other than his family. So we were going to take my grandpa home, no matter what.
3. Dialysis: Over the years my grandpa had gone back and forth on whether he would ever consider dialysis. He would say it was up to “us”. I did not like that answer, because if it were up to me, I would want to keep him forever and that is very selfish (in my opinion). I wanted him to make the decision based on what would be the best quality of life for him. He eventually did say, he did not want dialysis. When talking with palliative care nurse specialist she mentioned that 1. DNR would be best, as it would be more traumatic for him to be resuscitated than to just die a “peaceful death”, 2. He could go on dialysis, but what would be the quality of life? How much would it really add? What would be the cost benefit of this? This is different for everyone. For my grandpa, it appeared it would just entail more suffering. Although I couldn’t help but sense that we were being gently nudged in a direction of just letting him die “peacefully”. Who doesn’t want a peaceful death? The palliative care nurse was not my favorite person for many reasons including saying “he has a lived a long good life”. My internal response consisted of anger, rage, sadness and disdain. How would you know. Simply by age? Perhaps the medical professionals who work in end of life care should come up with a better statement, other than, they have lived a good long life.

Top things not to say to people who are grieving: (or at least to me)

1. They lived a long good life
2. Everything happens for a reason

Peaceful Death.

This is what got me to the point of wanting to write this blog/article, peaceful death. What is a peaceful death? This is how the palliative care nurse explained it and others within the same medical conglomerate explained it. Not verbatim but essentially that, dying of renal failure is the MOST peaceful way to go. That as the toxins build up in the blood the patient drifts in and out of consciousness and eventually drifts into a peaceful sleep. Wow! Since I told you my grandpa is the greatest guy I have ever known, he is deserving of such a peaceful death. This is good news.

I decided to look into what this peaceful death would mean in the body, how the breakout down of the body would happen and what the physical manifestations of this breakdown would look like, given, I was one of the main people going to be with him at home. I found some information about it being a relatively decent way to go at first and then I looked a little deeper. I found this article by a doctor who unfortunately had a father who was diagnosed with renal failure. The doctor researched and was told the same thing about this “peaceful death” and his father had to make the decision of whether or not to go on dialysis, and the consequences of going on dialysis or not. As I am reading this article and my heart is racing; I am watching my grandpa in his hospital bed and I have this doomed feeling in my body about what he might be facing. What do you mean this is not going to be a peaceful death? The doctors said it was the MOST peaceful death. The plan at this point is to take him home on home hospice as soon as we get clearance, what exactly am I in for? What exactly is my grandpa going to be facing? I read further and the doctor who wrote this article, tells about the horrible suffering his father went though as he was transitioning through this “peaceful death”.

I try to get some clarification on the process, is it really peaceful? I am reading that those who choose dialysis and then die of renal failure, may actually fair better in the death process versus not having dialysis at all. I ask this question, it was dismissed. My grandfathers bones start aching, and he is stretching and still trying to be strong, telling us he is ok. I ask is this part of the renal failure? Bones aching? His doctor said “no”, that was also incorrect. I realized that we were on our own, yes I advocated, but in the end, he was dying of renal failure.

What I wish I knew? I wish I would have known just how horrible it is die of renal failure then maybe we could have made a plan with my grandpa. Maybe we could have said when it comes to the end and if dialysis is not an option or an option not chosen then maybe, although controversial, we could take control and decide to transition when it would be better for him. I am talking about euthanasia, the right to die. Die on our own terms in the face of a terminal illness because as it progress only suffering will ensue.

We took him home on on a Sunday afternoon, he died that coming Wednesday morning. Not before he suffered with his bones hurting so bad as phosphorous is building up the body causing joint pain, bone pain, itching, fractures, etc. He was so uncomfortable he wanted to get everything off of his body, the pain must have been insurmountable. Suffering with hallucinations, calling out for his great grandchildren, not understanding why he isn’t getting better, and yelling out for help because it hurt so bad. My strong grandfather, yelling out for help because the pain was so bad. Is this the peaceful death they described? I started to think about the article I found from the doctor who described his own experience with his father, and I was thankful. I was thankful someone, a medical professional was telling the truth. Given I had read that article and a few other personal stories, I was as prepared as I could be.

Really, I don’t think anyone can be truly prepared to watch someone you love so much die. We gave him medication to keep him from the pain, we made sure he was clean, we put water on little gauze’s to keep his mouth and lips moist. It hurt him to be moved, and it hurt me to give him the medication, but it was better this way. This way he wouldn’t in pain. I would tell him, “I am sorry grandpa I am giving you this medication so you don’t hurt” and he would nod his head, because at that point that is all he could do, nod. There has got to be a better way. The option for euthanasia, the right to die, would have been great and if he would have not taken it, then at least he had the option. Patients need this option when they are coherent and able to make these decisions. When I think of my own death, I would like the option to go out the way I want. My grandpa did not deserve to suffer, and neither do I, or any of you.

What I wish I knew before I knew I needed to know it?

That dying of renal failure does not equate to a peaceful death.

I miss you grandpa and I am glad you are no longer suffering. I hope to see you again in the afterlife.

April (8/6/2022)

April