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.


Tears on the Job
by Barbara Karnes, R.N. | January 9, 2017

Dear Barbara, 

I'm an older nursing student who is starting a new position as a NA2 in a
lovely hospice facility. I've never experienced death from a clinical
standpoint. I have a concern. We, as hospice caregivers, will surely
become emotionally attached at different levels to our patients. How in the
world do we handle repeated losses of our patients from an emotional
standpoint. I know we will shed tears with each one, but what is the best
strategy to keep one’s emotions in check and be a beacon of strength for
the dying patient and then for the family after the passing?

This is such a powerful question. How you address it will affect how long
you remain working in hospice and end of life.

What stands out is your statement, “I know we will shed tears with each
one.” Actually, not necessarily. In fact if you cry with every death you will not
be able to sustain your balance. There definitely will be times when a
situation, family, or patient touches you on a deep level and you will cry. An
example: I walked into a room with a college boy and his girlfriend sitting on
a hospital bed listening to music. Before I could even be introduced I burst
into tears and had to leave the room. As his mother was standing with me
in the hall I told her I had a college son the same age and I saw and felt
what it would be like to have him in that bed. We talked and actually
became friends when all was over. The point I am making is that something
touched me on a personal level. If that depth was present with every
patient and family we would not be able to continue the work.

Death is not really a part of most professional caregiver’s job descriptions.
It IS for those of us who work with end of life. Most of the patient/families
we care for, we care for as people who need assistance but to whom we
are not personally attached. We guide them, support them, care for them,
but not on a personal level. We care for them on a professional level that
includes kindness, compassion, empathy as well as medical and end of life
education. This is our job and we can do it well without getting emotionally
involved.

We have to acknowledge that we are swimming against the current of
mainstream medicine. Death for those who work in end of life is not failure
or the enemy. It is the ending of the work we do. Our satisfaction in the
death of a patient is that we have helped create a sacred experience and
memory. A memory that will influence a meaningful and balanced grief
process. With our patient’s death we want to say to ourselves “job well
done”. No tears are necessary.

There will be times when something happens in the course of your work
that will shock you to your core. I remember a patient killing herself in a
horrific manner and having to contact our hospice psychologist to debrief.
There will be situations that you must retell, debrief, and share with
someone who can listen (not offer words, there won’t be any), but allow you
to unload so that you can move forward to the next patient.

It is being able to share with those who know the challenges of our work
that will keep us healthy and able to continue. It is not a sign of weakness
to share. It is a part of our responsibility to ourselves. On Friday nights after
work, a group of nurses from my office would meet at a local establishment
for beverages and conversation. There was a companionship of likeminded
and like-challenged people unwinding. It showed each of us we
were not unusual in having what ever feelings we were having, that we were normal, that we were not alone.

Something More about Tears on the Job...

It is a particular calling for those of us working with end of life.  Perhaps more challenging than other kinds of caregiving.  With the high number of turn over with end of life caregivers, I thought that our community needed support in how to take care of ourselves.  From that vision has come my new DVD, Care for the Caregiver which will launch in February.  There will be more information on my FB Group Page, End of Life Care and Bereavement in the coming days.  

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.

The "Do Over"
by Barbara Karnes, R.N. | July 5, 2015

When I was in my 20’s a close friend adopted a baby. She was a first time mom and I had two children plus was a nurse so I taught her about formulas, feeding, bathing and baby care. We spent many days and evenings together socially as couples and individually as friends.

Then one day I got a phone call saying the baby was found dead in its crib---SIDS (Only we didn’t call it Sudden Infant Death Syndrome then. It was just the baby died and no one knew why.)

Everyone (the whole group of us who socialized together) was in shock, no one knew what to say or do -------so we all did nothing. We went to the funeral and then to our homes. We didn’t call later, we didn’t socialize, we disconnected as if we never knew them. We abandoned this couple when they needed us the most. I cringe and feel shame as I write this even now after forty some years---one of my big regrets.

I tell this story because I would love to have a “do over".  I didn’t know any better then, none of us did. Sadly, what we did is still being done today by many people. People, just like us then, who don’t know what to do or say and in their uncomfortableness send a card and flowers and then play the avoidance game.

My “do over” opportunity is to tell this story in the hopes that when others find themselves faced with a friend’s grief they will have the knowledge to address it better than I did.

Years later another friend’s child commented suicide. As my husband and I were going to the visitation my husband said, “I don’t know what to say.” My response to him was to just say that---which he did and the tears from both men began to flow.

What I know now is it isn’t what we say. In fact, there are no words that can be said to make a person in their grief feel better, to make the situation easier. It is our presence, our being there, our support that has meaning.

It is the showing up at the house with sandwiches at lunch time weeks following the death. It is the phone call in the evening just to say “Hi, I’m thinking about you.” It is the sitting and watching a sunset together, sharing quiet, connected moments. It is also listening to their story, again and again, with no judgements, no speculation, no advice, just listening and being there.

Something more...

"No one has taught us how to act or what to say when someone dies.  More important, no one has taught us what it feels like to grieve.  We don't know how to heal the hurt created by grief or how to live with it."  That is the first paragraph of MY FRIEND, I CARE The Grief Experience.  Many give this book as a sympathy card and it costs less than a card at the drugstore.  Hospices buy it to give to families when a patient dies.  Clergy use it to comfort members of the church.  Some buy it when they are at a loss as to what to say when a friend's loved one dies.  It's here for you when you need it.

Thoughts on Assisted Suicide
by Barbara Karnes, R.N. | April 26, 2015

QUESTION: Talk about assisted suicide.

 

The term “assisted suicide” carries a couple of meanings. It can refer to the laws that Oregon, Washington, Vermont and Montana have enacted which  allow people with a terminal illness to apply to a medical program and, if approved, be given medication that they can personally take that will end their life.

Another reference to assisted suicide could be to individually help someone you know end their life.

In regard to the legality of Assisted Suicide in the United States, 39 states have laws prohibiting assisted suicide, three states have common law precedent showing it is illegal and four states, Nevada, Utah, North Carolina and Wyoming, have no laws or reference to the legality of assisted suicide. So basically if you help someone end their life it is against the law and you can be prosecuted for that assistance.

Aside from the legality of the act we, as human beings, are generally not emotionally strong enough to live with the knowledge that we have helped kill someone we care about. Helping someone we care about end their life can create guilt and turmoil in our own life, forever.

There are a lot of feelings, judgements and opinions (often strong and intense) about the morality of assisted suicide. Because that area is such a mine field I will only say that until we have walked in a person’s shoes we cannot possibly know or understand their wanting to skip the experience of dying and move right into death.

Most people having a life threatening illness think about suicide, very few actually do it. Even in the states where it is legal the response for the assistance has been less than anticipated and those getting approval often do not carry through and take the medication.

In the months before death, when we have been told we can’t be fixed, our fear of what will happen between now and death, the lost of control, the fear of pain, all contribute to the “I just want to die now and get this over with” thoughts.

As the dying process begins, a person slowly, over three to four months, begins to withdraw from the world around them. They become less interested in everything and become introspective: fear and thoughts of control recede. The desire to end life becomes less important, hence even those that have expressed strong feelings about ending their life often don’t.

For those that do carry through with the plan to end their life whether legally or take their own life without help we, the survivors, need to remember that sometimes it is just too hard to stay alive. Living is hard work (we all experience that part of life). We also know that death will find each of us at some time. How death comes needn’t be the issue. Let compassion and caring be the gift we bring to ease the fear of this final act of living.

Something more...

A TIME TO LIVE Living with a Life-Threatening Illness is a publication that offers some guidelines to help you/loved one live with a life-threatening illness.   

TAGS Suicide
Suicide Thoughts and End of Life
by Barbara Karnes, R.N. | July 14, 2014

QUESTIONS:  Suicide

Obviously this is a very big subject and I can’t begin to cover it so I will just address suicide in relation to end of life issues.

I've come to believe that most people who have been told they can’t be fixed, in the months before the dying process begins, will think about suicide. Yet very few people actually follow through with those thoughts. I think those thoughts of ending our life originate from the fears of what life will be like from this point until death occurs. “I am more afraid of this final act of living than I am of being dead. ”We fear the idea of pain, of loss of control, of debilitation, of humiliation and indignities, of isolation, and ultimately of the unknown.

When I think a person is having these thoughts and fears I start addressing the specific fears: No one has to die in pain today; we will keep you mobile and active as long as you have the desire (It may not be active as you know it today but we will help you get your needs and wants met); you are the boss, the keeper and director of your destiny; your dignity will be respected at all times. You are a human being, not a disease and we honor that.  You are not alone, ask anything, let’s keep the doors of communication open and I can tell you what it is like to die if you ask me. You will probably sleep through the actual experience. In the weeks before death you will be withdrawn, have turned inward and sleeping most of the time. Your focus will no longer be on this outer world, most will just seem like a dream.

Thinking about suicide is a normal reaction to being told we can’t be fixed. Communication, talking openly about it and the fears initiating those thoughts, neutralizes some of the fear we will all bring to our final challenge.

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Blessings!