Something to Think About.

Barbara's blog

For the last 30 years all of my patients have died. I will be sharing observations and ideas that I have gathered from working with people in their final months of life.

You may not agree with what I am saying. I don’t pretend that what I have figured out about living and dying is true or is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.


Faith and the Dying Process
by Barbara Karnes, R.N. | March 20, 2017

Dear Barbara, How has faith entered into the dying process?

What does “faith” mean? I am going to say, for the sake of this blog, that faith means religion and the various dogmas it teaches. Although “faith” could mean “a spiritual belief”.

It seems a lot of us want faith to be part of the dying process. Our idea, and maybe our wish, is once we approach the end of our life  we will believe that God exists, that we are accountable, that we will go to a good place and this will make our dying easier, maybe even less scary.

I’m just not sure if that really happens. Yes, for some it may but for most of us I think we approach the end of life with whatever beliefs we have gathered throughout our life. I don’t see people reaching death and suddenly changing their ideology. If they had “faith” they may find comfort in its teachings. If they did not they may find comfort elsewhere. It does not mean faith always comforts and not having faith brings discomfort.

Going beyond religion and God/Spirituality I do believe on many levels (conscious and unconscious) we question our life, our relationships, our purpose. A “what have I done, who have I touched” review. In that evaluation we may look at our spiritual beliefs. It is just that most of us don’t change those beliefs. Some of us do return to the religion we have been lax in attending and practicing.

One of the key aspects of approaching death I almost always see regardless of an individual's belief system is fear. We are all going to be afraid to some degree as we approach death (degree being the operative word here). That fear often gets confused with our belief systems. Some who, in their healthier days, rejoiced in the idea of being with God, become fearful as death approaches and think it relates to their belief in God. I suggest that that fear has nothing to do with God but relates to the humanness of facing the unknown.

Religions that teach heaven and hell affect us as we approach the end of life. If we believe we have not lived up to our religion’s expectations of entry into heaven we may be hesitant to let go of this life (We have limited control over the time that we die. See Gone From My Sight).

If prayers brought us comfort in living then they will bring us comfort in dying. If we did not relate to praying in living then we will not necessarily relate now. We die the way we have lived. We don’t change who we are just because death is near.

All of the above is why it is so important for us as healthcare providers to keep our beliefs to ourselves. We are at the bedside to support,  and guide, bring comfort, not to bring change. It is all about the patient/family and nothing to do with what we believe.

Something More about Faith and the Dying Process......

In my book, The Final Act of Living, Reflections of a Longtime Hospice Nurse, I have a chapter on Spirituality.  This may be a helpful resource.

When a Dream is Shattered
by Barbara Karnes, R.N. | December 27, 2016

I am printing this letter and my reply at this holiday season because I believe this man is not alone in his feelings of hate, anger, and regret. Maybe by hearing his story others will find understanding. I don’t talk about my personal experiences, not the place of a professional caregiver. However, sometimes sharing your story helps create a bond of understanding and possible healing.

Dear Barbara,
This email may get a little long, please forgive me. Through the years I have never found anyone I could talk to, one that could truly understand but you!

I have written to you before, the latest being when I told you what it was like to watch my wife being forced to carry to term our anencephalic daughter.

This article "Stuck in Grief" also hits home because it was 38 years ago on December 22, 1978, that she was born & died.

On that day, as I sat outside the delivery room, I cried, I prayed to both God & Satan they could have me, my soul, my being, any and everything of me either wanted if my daughter could just be normal healthy & whole. Obviously bargaining didn't work. So where was God & where was Satan. As you cannot have one without the other. How could a just loving God allow this to happen to a child. So much for there being a just loving God.

At that moment I started hating God, Satan, preachers, religious leaders, politicians, everyone & Christmas. And 38 years later I still hate the holidays, I hate Christmas most of all! I find absolutely no joy at all in any of the things to do with the holidays. As people bounce around with all their joyous b.s, they have no idea of the hurt & anger & heartbreak that is within me. And when you try to share they either don't want to hear or don't care because it doesn't affect them.

I asked my wife's doctor to allow me to view my daughter, which he did, but I could only stand & stare. He offered her hand to me but I couldn't take it (a decision which has haunted me ever since). I held my most prized bird dog as he was being euthanatized so he would know he was loved & not alone for his final breath & yet I could not even hold my dead daughter's hand.

It was certainly not a very bright or fun Christmas time. And my own birthday was coming up just 7 days after my daughter died.
Every year I always say nothing good ever happens at Christmas & nothing ever does.

I don't remember ever sitting down with my wife, holding each other & actually crying. We allowed the hospital to use whatever was viable for donation or research after they performed an autopsy (at my request) so there was no funeral, that decision still haunts me too! I know I made the best decision I could at a really bad time but it doesn't make it any easier. So I guess the crying and venting you see at funerals as a way of relief I deprived myself of.

My wife did say that our daughter did come to her in a dream & tell her "she was fine & happy &...."  How do you question someone's dream, it's her story who am I to call her a liar. But nothing like that has ever happened to me. So needless to say people who claim to have had things like that or that God performs miracles just make me want to scream at them that they're full of b.s.

People have said things happen for a reason, 38 years later I still have never seen or been given any enlightenment as to why things happened. And to be honest it really ticks me off when people say it too.

I understand what it's like to be stuck & not able to get past something & have no idea of how to do it. Those who say just lay it down have never been through it. If they had maybe they could have a glimpse of that person's feelings.

People have told me "hating " is a waste of time & only destroys you. The people you hate don't know it, & they could care less if you do hate them, because it doesn't affect their lives.

I know all this to be true, but I just cannot stop those feelings of hate.

As I finish this long email I look at the clock & I know in a few hours it will be the 38th anniversary of my daughter birth & death. The hate, anger, and sorrow is still there and it's there every year & won't go away.

I'll end this now with an apology & a thank you. Apologies because it is so long & thank you because you took the time to read it & most of all because you understand.

-----------
I am glad you feel comfortable enough to reach out to me during this life challenge that becomes more intense at holiday time.  Here is my two cents worth:

I don't know that there was a reason your daughter died at birth and I don’t believe that everything happens for a specific reason. I do believe there was a life lesson in everything that happens to us. For you, your wife, and your other daughter there was a lesson. The lesson was how to go on living when a dream is shattered, when life did not go the way you planned or wanted. That is the lesson. In looking back on your life it looks like you handled your lesson with hate (your words), guilt, and regrets.

It is not too late to examine the lesson, to rethink your reaction to it and to put all those tormented thoughts and feelings to rest. I am not expecting you to change but am saying you have the opportunity, if you want to take it, to reevaluate the lesson life gave you.

You may be thinking how can Barbara say these things to me, she hasn't experienced the loss that I have. She doesn't know what it feels like. BUT I do. I too had a baby girl, actually twin girls, die. They died in my belly a month before I gave birth to them. I knew for a month they were dead in my body. I did not see or hold them when they were delivered, no funeral. I delivered them, spent the night in the hospital and went home empty. I was just given a card with "Baby girl A and Baby girl B" written on it. I know your pain of anger, feeling cheated, wanting to blame someone other than myself.

What I have written to you is what I came to believe in order to move on with a healthy life.

In the Blog article "Stuck in Grief" I suggest writing a letter to the person that died and saying from your heart what you need to say that you didn't say before. I recommend that you write your baby girl a letter. Pour your heart out to her and offer to her your wanting to let go of all the negative feelings you have been carrying all these years. Tell her, from the bottom of your heart, how you want to be free of this heavy weight you have carried all these years.

You might also start a yearly ritual of blessing your daughter. On the day of her birth and death light a special candle and let it burn through out the day. Talk to her, tell her you miss the opportunity her life would have given you both. Then at the end of the day blow out the candle, put her to rest, until next year. Give it a try. I think you have carried this long enough.

Something more about When a Dream is Shattered...

We often feel quite alone with our "dark" feelings.  We need community.  Others who can listen, offer ideas and support.  That is why I have a FaceBook Group, End of Life Care and Bereavement ~ a place where we share.  I hope you will join us.

Stuck in Grief
by Barbara Karnes, R.N. | December 12, 2016

Dear Barbara. A friend of mine lost her son back in 1987. I knew him in high school. Even now all she talks about is her dead son even though she has two living children and grandchildren. The conversation always goes back to her dead son. I listen, but the same stories keep flooding back. Her pain is real. Is there anything else I can do besides listen?

The death of a child is probably the worst loss we can ever have. Our children are supposed to be our legacy to the world. It is in the Parents Handbook (therefore law) that parents die before their children. A large piece of ourselves dies when our child dies. Our grief knows no end. The pain is etched in us forever.

In normal grieving, time begins to lessen the intensity of the emotional pain  of our loss. There is a process to grief (see My Friend, I Care) and although we never forget our loved one who is gone we eventually learn how to live without them. We eventually build a different life with our memories. Some people however get stuck in their grief. They just can’t seem to figure out how to move forward balancing their loss with the life they are left to live. This being stuck is very common with the loss of a child. There is a part of us that thinks if I keep talking about my loved one who is gone it will keep them alive for everyone, that no one will forget.

What more than listening can you do? Probably nothing. Since it has been 29 years, my guess is her way of thinking and interacting is so engrained in who she has become she can’t think or change to any other way. Her family has probably adapted to her just the way you have (They may have more scars. It sounds like they lost not just a sibling but a mother).

As a friend we have limits to how much we can challenge an acquaintance’s choices in living. I have some very close friends that I could talk with about the pain of loss and how it is affecting the family and others but most of the people I know I would be uncomfortable going into their personal space uninvited. Sometimes just being there and being a listener is our greatest gift to another.

Something more about "Stuck in Grief"...

"One of the most sincere forms of respect is actually listening to what another has to say." --Bryant H. McGill  My Friend, I Care is quite helpful with the grieving process - some use it as a bereavement card.  (And it's cheaper than a Hallmark card!) 

Does Morphine = Euthanasia in the Dying?
by Barbara Karnes, R.N. | November 14, 2016

Dear Barbara, I have seen many dying "euthanized" or given fairly heavy duty morphine drips to allow "dying in peace". I've also seen doctors recommend it to "hasten" the painful process of dying. Most people do not believe that death is not painful. I've also seen patients who ask for morphine to hasten the process.
That's my question... should a dying person be offered that choice and would it be considered medically legal?

A great question. You have actually touched on a line of thinking that a lot of people have about the use of narcotics at end of life: that the narcotic is used to end life sooner than if dying were allowed to follow its natural course.

I too have seen heavy doses of morphine given to end a life of suffering prematurely----but not often or on a regular basis. Most medical professionals approach intense pain at the end of life by giving what they deem appropriate to relieve the pain. Our objective is to relieve pain not end a life.

More common in my experience is the patient asking, not in the hours before death because they are generally non-responsive, but in the months before death to help them end their life. My answer, and I think I can speak for most healthcare professionals, is “I cannot do anything to help end your life. I can do everything in my power and knowledge to keep you comfortable”.

Now to your actual question “should a dying person be offered that choice (the choice to have enough narcotic given to end their life) and should it be considered legal?  With our assisted death laws in several states  it now is legal to voluntarily end your life sooner.

In the days to hours before death, legally offering the patient the option to end their suffering by an excessive dose of narcotic is really not viable because most people are non responsive. They are not in a mental place to make any kind of rational decisions. The patient will not be able to say yes or no to such an offer. Now the family can, BUT most of us are not strong enough emotionally to live with the decision to end our loved ones life prematurely, even if it is just by days or hours. That is the main reason I am against making it a legal option to end someone’s life prematurely in the name of comfort. There are too many ways that legal ability can be misused.

However, I am a firm advocate of giving however much narcotic is necessary to lessen a person’s pain. Sometimes the only viable option is to give enough narcotic to create a sleep state (induced coma) but not enough to stop breathing.

Something More about "Does Morphine = Euthanasia in the Dying":

Pain management of the dying is a complicated, emotional piece for the families of a loved one who is dying.  Clarity on the subject is available in The Final Act of Living.   Advance Directive information is available in the final section of the book also. 

 

Dangers of Morphine for the Dying
by Barbara Karnes, R.N. | October 30, 2016

Dear Barbara, Talk about the dangers of giving morphine to one who is dying?

I have written many articles on morphine yet I repeatedly get this question. What that tells me is how big the fear is, and how lacking the knowledge, around the use of morphine.

Here are my thoughts on the use of morphine at the end of life. First and foremost dying in itself is not painful. Disease causes pain. If the disease history of the dying person is one of experiencing pain, than we must treat that pain with whatever it takes and however much it takes to keep the person comfortable until their very last breath.

There are diseases that do not cause pain. If the person's disease history is one of no pain then there is no reason to give them morphine just because they are dying. UNLESS breathing is an issue, not the normal puffing and start and stop breathing that occurs weeks and days before death, but severe labored breathing. Then a small, small, amount of morphine will often ease the difficulty in breathing. We must remember that taking in oxygen by breathing is one of the ways the body lives. If it is preparing to die then breathing and air intake will be effected. That is part of the NORMAL dying process.

I had a friend who drank an entire bottle of liquid morphine in a suicide attempt. He had no previous use of the drug, so its full effect acted on his body. He slept a long time but did not die. A different person (body size, age) might have died. But my friend didn’t . This tells me our bodies can take a lot of morphine and not stop breathing.

I will ask the obvious question here: If, when someone is in the dying process (days, hours or weeks before death), the morphine dosage were to make them die, is that really a consideration? Yes, I think it is. No caregiver wants to live with the knowledge that the medication they administered made their patient die (I think this is the center of caregivers fear of narcotic administration).

In the days to hours before death a person’s body is shutting down. Nothing works right. Circulation is slowing down (mottling, very low 60/40 blood pressure). It is circulation that makes medications work. Medications taken by mouth, skin, or rectum take a long time to be absorbed into the blood stream. Even longer if the circulation is compromised which it is when a person is dying. If you give a narcotic other than through  an IV     (let’s hope most people are not getting IV’s in the days to hours or a week before their death from disease) it is going to take a VERY long time for this medication to work.

If you give morphine to someone who is in the dying process hours before death and they die shortly after you administer the medication they most probably did not die from the drug. They would have died with or without the narcotic.

All of the above said, I am going to give you something to think about. The key to a gentle death is to relax. All we have to do to slip out of our body is to relax. Fear, pain, and unfinished business are what make our “labor” to leave this world longer. If someone is very agitated (fearful) and/or has a disease history of pain then giving them medications that can reduce those occurrences can be very beneficial to allowing the person to relax and have a gentle passing from this world to the next.

Something More About "Dangers of Morphine for the Dying?"...

Hospices and Palliative Care Centers are using my dvd, NEW RULES for End of Life Care to educate families on how and why morphine may be used with a loved one why is dying.  It is so common for nurses to hear families say, "I don't want Mom to get addicted", and not allow use of this helpful tool.  NEW RULES... can help to make this conversation so much easier.

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Blessings!