Dialysis and Death (Part 4)

The-top-five-regrets-of-t-007my friend is on dialysis and is dying. how do I talk to him?

Above is a “search term” which showed up on my blog account.  In other words, that is what someone entered into a search engine like “Google” to get to my blog.

In the comments on a previous post, “Dialysis and Death (Part 3)”, a reader makes the point that death is inevitable.  Another comment raises the issue of the “process of dying”.  So, obviously this is an important issue with dialysis patients and their sphere of friends and relatives.  In this case, it’s a friend of a dialysis patient asking, “How do I talk to him?”

I’m certainly no expert on death and dying and how to deal with it as either a patient or the friend of one.  What I offer is my gut-level feelings and my own personal views on it.  I’ve dealt with the issue several times (perhaps many) in my life.  When I was in my 20’s I had a couple friends who passed then, later in life, I had more friends who passed.   It’s a fact of life that as you get older, you deal with death more and more.  The most significant experience was with my friend Jayne about a dozen years ago.  I agreed to take care of her so she could die in her home (which she did).  Then in this last year or so, I lost two more good friends.

Keep in mind that dialysis is life-giving. Just because someone is in kidney failure and is on dialysis doesn’t mean they are “dying”.  It’s a fact that dialysis patient don’t live as long as non-dialysis patients but, my point is, just because one is on dialysis doesn’t mean death is just steps away.  However, more than most people, dialysis patients must face this issue head-on.  Likewise, their friends and family must also face this issue. I’m pleased he/she wants to discuss the issue openly.

To specifically answer the question that began this post…  I’m not sure anyone can answer that.  He is your friend and you are much more familiar with the circumstances such as his age and his reasons for dialysis.  It’s a difficult subject to broach with some.  You know he’s dying,  He knows he’s dying.  So why not just launch in.  Find a private location and moment. Take a deep breath. And go fo it.  When you’re done you may have the feeling I did with my friend Jayne.  I felt like I had said all that I needed to say and I believe Jayne did too.  She knew I loved (and still do) her and I know she loved me.  We didn’t like having to part ways but the paths we are walking only diverged for a while.  Eventually we will come back to the same path and we’ll walk together again.

To enter into the discussion, just ask him how he’s feeling.  If he says, “fine” or goes into medical conditions, stop him and explain that you are more interested in how he’s feeling about the possibility of death.  How does he feel about dying? If you can find a better way, use it.  As much as possible, let him talk.  You can open the discussion but he’s the one that needs to talk about it.  Don’t shut him down.  Don’t tell him, “It’s going to be okay” because you know it’s not.  Even if one of you begins to cry, don’t change the subject to “make things better”.  I cried and Jayne cried.  We were talking about death.  Crying is okay.  I reached deep inside myself and made sure I said all that I needed to say.  I didn’t want to end this talk with anything unsaid.  That was our last time to speak.

Age is not a factor in death as kidney disease effects all of us on dialysis.   We want to believe that the young will live longer than us but unfortunately death doesn’t discriminate by age.  It seems so much worse when it’s a young person who dies so dealing with the death of someone young is much more difficult than an older person.  This fact makes it more difficult to speak about death with a young person. 

Talking about death with someone is not really different than speaking to anyone you love.  Always speak from your heart to loved ones.  Don’t let things go unsaid.   I came across this web page from the Cancer Research UK titled, “Difficult questions when you are dying“.  It may help to get you started.  I encourage you to follow your instinct in this case.  If you have the patient’s best interests at heart, you will do the right thing.

Just to rehash… my previous posts about Dialysis and Death are:

Dialysis and Death – where I wrote about the death of my dialysis friend, John
Dialysis and Death (Part 2) – where I wrote about how HIPAA often interferes with notifying other patients about a dialysis patient’s passing.
Dialysis and Death (Part 3) – where I link to an article by Dr. Robert Allan Bear who wrote about “palliative care”  (healthcare that focuses on relieving and preventing the suffering of patients)
 

So, you can see, death is an aspect of dialysis.  As much as it gives us life, those of us on dialysis must also deal with the ever-present possibilities of death.  It’s a serious issue and one with which patients, family and friends must cope

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
This entry was posted in death, dialysis, ESRD, HIPAA, kidney, patient care, Patient-Centered Care, personal, Social Work, thoughts and tagged , , , , , , , . Bookmark the permalink.

7 Responses to Dialysis and Death (Part 4)

  1. Clara says:

    Thank you for writing this.

  2. marie robinson says:

    It is a very hard thing to talk about. My husband was dying of infection after cancer treatment and told the Dr. he didn`t want to know and to tell me. So I had to deal with it and we talked and cried in small amounts of time, until we both knew. Everyone is different and will deal with it differently.

  3. jdthstwrt635 says:

    thank you for sharing, it honestly helps to read what others are feeling, it helps to be able to put my thoughts into words.

  4. William "Bill" J. Stewart says:

    Beautifully said.
    And the comment about HIPPA is correct. We suddenly realize that a fellow dialysis friend is missing but no one knows why, and the center techs can’t tell us. I remember the stir when I said I didn’t care if a hospital put my medical details up on a billboard, but they had no forms for me to decline HIPPA. I had had a class on HIPPA when I still was working, and was told we could declne but in reality you can’t. That becomes a major stumbling block when dialysis means you could die at any time.

    I am going to give my pastor a link to these comments. Thanks for looking at death.

  5. stela720 says:

    great read….. finally found my password lol

  6. David Reaves says:

    One hard question that I haven’t resolved is how to prepare the ones that will be left behind when I’m gone. I’m doing pretty well, and the outlook is good. As you said somewhere, though, the numbers clearly show that we (with dialysis) will go sooner than our contemporaries. I’ve prepared myself somewhat, knowing that the prospect of dying is much worse than it would be if I were not on dialysis. My family history bears that out. My mother died at the age of 49 after about 4 years on dialysis. My eldest sister died at the age of 51 after several years of dialysis. I am 52, and have been on dialysis a total of seven years.

    I’m not eager to see death, though. I have two daughters, both married, that may someday have children. I hope to be around for them, and for my wife of 30+ years. There are still lots of life events and milestones in which I’m hoping/planning to participate. Ultimately, it isn’t that likely that I will be around for a very long time. I accept that, and I’m trying to make the most of what I have now.

    How does one prepare their loved-ones for the eventuality without seeming morbid or defeatist? I’ve done some financial planning (I had good life insurance at a couple of jobs), but not really anything else. My wife and I are rarely apart other than her work. I don’t know how to prepare her for life after me… [Sounds like I have a big ego. I know how hard it was for my father and I when my mom died. I know how much I would miss my wife if she were gone.] I’ve read about preparing yourself, but never seen anything about helping prepare those who will be left behind. Don’t really know what to do, but don’t want to do nothing.

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