Something to Think About: a blog on end of life

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've figured out about living and dying is "capital 'T' truth" or that it is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.


Getting Yelled At ~ How to support an RN
by Barbara Karnes, R.N. | February 20, 2017

Dear Barbara, how to support an RN who gets yelled at by families and MDs at this precious time of life...it is a constant battle. The hospice MDs are more stressed than ever.

The word “constant” concerns me because that implies it is happening a lot. Are you referring to yourself or physicians and families in general yelling at RN’s? If it is just yelling at you then I suggest you look at your people skills. Most families are stressed, tempers can flare, nerves are frayed. It is up to us as professionals to use our communication skills to ease the tensions. The next step is to not take the family tensions personally. Do your job of educating, supporting, and guiding then leave the tensions where they originated and move on to the next family.

Physicians are a different challenge. In the hierarchy of the health care professions it is the physician that has the power, makes the referrals, writes the prescriptions, calls the shots. SO, again using our communication and people skills is a huge part of our job.

There is a thin line being walked with end of life care when it comes to a good number of referring physicians. Instinctively they have a hard time releasing treatments. I used to tell my nurses if you don’t want something from the attending physician don’t call them with just an update. They will think they have to do something. It is just their nature. I know that is an exaggeration so I will qualify it and say not all physicians are in this category but you get my point. Physicians are often going against their own beliefs by referring to hospice. They are uncomfortable, and that internal conflict is often directed at the hospice employee. Or they could just be an unpleasant, irritable person (they are everywhere, not just in health care).

What do you as an employee do? If it is a big outburst and in your eyes inappropriate and unacceptable tell your supervisor. Ask that they speak to the physician about the appropriateness of the interaction. If it continues ask that you do not work with the particular physician’s patients.

Again, do not take the conflict personally. Look at your part of the disruption. Learn what you can from the interaction and then let it go. 
We of all people know the precariousness of living. We see daily how quickly our time on this planet is over. Time is too precious to let negative interactions with others affect how we enjoy each day.

Something more about Getting Yelled At:

There is a special kind of pressure that the EOL nurse feels- helping the patient have a "good death", caring for families who are under duress, and doctors who may feel failure that their patient is in hospice.  But you, the caregiver need care too!  Caregiver burnout happens when we only care for others.  I wrote a new book and made a dvd to address this issue.  It's called Care For The Caregiver.  I hope that you take advantage of this resource!

Laboring To Leave ~ Difficult Breathing at End of Life
by Barbara Karnes, R.N. | February 6, 2017

Dear Barbara, I would like to know why the breathing pattern is different at
end of life. My Mother had fast and labored respirations. She did have
COPD, but my Dad had the same breathing pattern and he did not die from
COPD. This was very disturbing to me. Are they suffering when breathing
like that?

The irregular, difficult breathing that occurs at end of life frightens most
people. As we watch we feel something bad is happening. Our loved one is
hurting, struggling, suffering, and of course this is disturbing to us.
In the hours to minutes, sometimes even days, before death, a person’s
breathing changes. First it becomes fast, often with congestion, and then
gradually the breaths becomes slower and slower. As breathing slows (ten
times, or even six times, a minute) the person actually breaths like a fish,
with their mouth opening and closing. This can be frightening if you don’t
know that it’s normal.
The congestion that occurs before death will depend upon how hydrated or
dehydrated a person is. The more fluids in their body, the more congestion.
Sometimes changing their position (laying them on their side) will help to
redistribute the fluid, and the breathing will sound quieter. Suctioning the
fluid generally does not eliminate it. The bottom line is that congestion and
difficult breathing are a part of the normal dying process.
Is the person suffering? I think not, although it appears that they are. By the
time they are hours from death their awareness of what is going on around
them and of their body has diminished. What I envision is the little chick
working hard to get out of its shell. In the hours before death from disease
our body is shutting down. It is laboring to release itself from this planet. It
is a struggle, just as the chick is struggling, but I don’t think either the
person or the chick are suffering.

Something more about Laboring to Leave:

Difficult breathing during the natural dying process is only one of the many changes that we will witness when a person is dying. It's comforting to know what to expect during that process.  Gone From My Sight (The Little Blue Book) is a "road map" of what will occur during the dying process.  The Eleventh Hour is the companion book and is more specific about the changes in the last days, hours, minutes, seconds and just after death.  These two books, along with your nursing staff, will provide knowledge so that you can better support the one who is laboring to leave.

Worker Bees, Watchers & Talkers~ Which Kind of Caregivers Are You?
by Barbara Karnes, R.N. | January 23, 2017

Dear Barbara,  There seem to be family caregivers who feel that everything falls on them when they have other family members, siblings, etc that could help.  Burnout of the main caregiver happens and then everyone is frustrated that the caregiver isn't continuing to do more.  Sometimes the caregiver gets short and verbally abusive after being the main caregiver and other family members are mad about it...

Sounds to me like you need a break. Within the family structure we have worker bees, players, watchers, talkers, all kinds of roles that get developed somewhere along the family path. We then perform the roles that are expected of us.

That is the dynamic that I think is happening here. As a worker bee myself I know it is very hard to ask for help. “I‘ll do it” is me. I may be tired, even irritable, but will keep going. I keep doing a task I have taken on (and I tend to take on lots of tasks) because that is who I am, or that is who I think I am, the role I play in the family.

Sometimes when we think that others think we are not doing enough, it may actually be us thinking that the others are not doing enough. When the worker bee caregiver is not getting enough help from other family members, often it is because others have not been asked to help. It can be hard for us to ask for help. We may want help but just don’t know how to ask for it---so we don’t ask and then feel put upon and over whelmed. It becomes a difficult situation of our own making. We don’t seem to know how to set limits for ourselves. The thing is if we don’t start asking for what we want and need, if we don’t stop doing more than we comfortably can, we will reach a point where we CAN’T continue.

Irritability can easily come with feeling overwhelmed, over worked and unappreciated.  What can we do about all this? Ask for what we need. Show our vulnerability, practice saying no and setting limits for ourselves with others and with tasks. Have a family meeting and ask for the help needed. Try not to to point fingers but just honestly and directly tell those who can help that you are feeling alone in this heavy responsibly of caregiving, that you need their support and assistance. As a family, make schedules of who can do what during this meeting.

All of the above sounds so organized and reasonable BUT we are dealing with personalities, families and all of our dysfunction (We are all dysfunctional, it is the name of this life game we play). Asking for what you want may not bring you anything. What then? You can aways just walk away, leaving a mess, but it will force others to do something. (Really hard for us worker bees to do).

Something more about Which Knd of Caregiver You Are...

I suggest that nurses, caregivers and family members read A Final Act of Living, and particularly focus on the self care portion. 

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.  

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.

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Blessings!