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.  

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 "No Code" mean "No Care"?
by Barbara Karnes, R.N. | August 24, 2016

Dear Barbara, would you address the belief among so many people that a “no code” means “no care”.

There is a general lack of information about almost anything medical. We don’t deal with medical issues until we need them and then instead of researching or even asking questions we tend to accept our physician’s recommendations. With this lack of involvement  and knowledge in our care we also bring our misconceptions. Misconceptions and lack of knowledge about end of life abound. What a “No Code” means and what it involves is one of the areas a lot of people don’t really understand. It is also a term most professional healthcare workers ASSUME people understand.

First, lets define “No Code”. The simplest explanation I found was Googled from the Free Dictionary http://medical-dictionary.thefreedictionary.com/no+code
“a note written in the patient record and signed by a qualified, usually senior or attending physician instructing the staff of the institution not to attempt to resuscitate a particular patient in the event of cardiac or respiratory failure. This instruction is usually given only when a patient is so gravely ill that death is imminent and inevitable. Also used is DNR ("do not resuscitate)."

With our medical advancements we are now at a place where we can basically keep a physical body breathing for an undetermined amount of time. Notice I wrote “breathing” instead of alive. We can pee for people, keep their blood pressure up enough to circulate, although poorly, our blood through the body, keep the heart pumping and the lungs expanding. What we can’t do is give people a life beyond breathing, life of “alive” interactions, smiling, responding, thinking, exchanging.

When a person is in a  situation that the medical professionals (physician) determine they can not be fixed, that they will die from their disease, that at some point the person’s body will stop functioning normally and only machines and severe medical interventions will sustain breathing, it is often asked if the person wants to be a “No Code” and sign a DNR form. As stated above that means when the person stops breathing and their heart stops the medical professionals will NOT try to start the heart or use a machine to keep the person breathing. They will NOT use a lot of medications to keep the body functioning. 

What most people don’t realize is that by NOT choosing a “No Code” or NOT signing a DNR form there is no guarantee (it is not even implied) that the person who died (coding tries to bring the person back) will be returning to a normal functioning life or that whatever they died from will be changed, let alone cured.

Does a no code mean no care? Definitely not. It means a different kind of care. Care that is directed toward comfort. Care that involves less medications and interventions that prolong being trapped in a nonworking body. Care that places emphasis on allowing death to occur naturally following the body’s timetable, Care that is not using extensive medical interventions with its incurred suffering to prolong the inevitable. Care that is focused on keeping you comfortable until you die.  Pain medicines, positioning, skin and mouth care, and family support becomes the focus.

In this age of such advanced technology we tend to forget that everyone dies. We are born, we experience, and then we die. That is life. We have made amazing medical advances.  We can prolong breathing but with it generally comes suffering  and of course we will still eventually die.

Does choosing to be a “full code” (have everything medically possible done to keep you alive) buy more time? Maybe. But what kind of time is the question? Generally not very good, interactive time. Being a no code, signing the Do Not Resuscitate form does provide the assurity of a more comfortable, natural death. Remember dying is not painful, disease causes pain. The normal natural way we die from disease or old age is we gradually withdraw, our sleeping increases and we eat less and less. When it comes time that we actually stop breathing we are asleep and non responsive.

There are questions to ask your physician when asked if you want to be “Coded”, you want to be resuscitated if your heart stops,  or you want to sign a DNR (Do Not Resuscitate) form, to be a “No Code”. These are also the questions to ask if your loved one is in a medial situation and you are being asked to make these decisions because the person, themselves, did not, and now cannot, address these issues.

What are my chances of returning to a “normal” life following my heart stopping and requiring the medical intervention to restart it?
Will the medical condition that stopped my heart and made me die be different (improved or declined) after you have restarted my heart?
Ask for a description of what a “code” involves. What will be done to my body?
If I choose to be a No Code, to have a DNR order in my medical file, what will happen to me from now until I die? What kind of care will I receive? How will this decision affect my relationship with you, my doctor?

Something more about Does "No Code" mean "No Care"?

Since I am often asked how to find an Advance Directive, I've decided to provide one of the many links to download an advance directive in your area.  Do it.  Today.  And breathe easier knowing it's done.  https://www.medicare.gov/manage-your-health/advance-directives/advance-d...

 

Have We Lost the Essence of Hospice?
by Barbara Karnes, R.N. | June 14, 2016

Barbara, There is much in today’s media about the negative aspects of hospice care. Is not-for-profit better than for-profit? What about quality of care issues?  It is very sad to see hospices turned more and more into corporate business models with less and less care for, and response to, patient needs. Far more is focused on corporate bottom lines. Please comment.

Over the years I think Hospice service has changed from its original intent. When hospice started, choosing it was for the patient and family, almost like walking away from the medical establishment. They returned home to live the best a person could until they died. No blood draws, no lab values, few procedures, but a lot of education, support, guidance, and presence.

Today’s hospice is much more medically oriented. It has more protocols, more policies, more regulations, more money.

The not-for-profit vs. for-profit argument has waged since for-profits entered the hospice arena.  What people don't seem to understand is that the care is not about the legal classification of the agency (they all make a profit). It is about the philosophy of the individual hospice and how that philosophy is dictated by the administrative principles of management. It starts at the top. You can have an office full of caring, dedicated staff but it is the leaders who set the tone.

The end of life avocation that hospice originally presented is becoming a gift of the past. Now it is a business with high censuses, detailed and often confusing regulations, and marketing staff and strategies separate from clinical staff.

There are more and more inpatient facilities being created but only to serve for symptom control, because that is where the reimbursement lies. Most end of life symptoms can be managed at home but not everyone has a caregiver in the home as death approaches. We need inpatient facilities that provide care during the last weeks/days of life, but at present there is no reimbursement for just dying in a facility.

Maybe the recent negative attention hospice has gotten in the Washington Post and other media sources will bring about change. More regulatory action is not necessarily the answer for those changes. Enforcing the process that is already in place rather than adding to regulations. In fact, eliminating some of the micromanaging regulations while continuing to monitor quality of care and compliance would work very well. Unfortunately, this is not what appears to be happening.

Dying is not a medical event. It is a social, communal event. I would like to see less focus on the medical aspects of dying and more support in home care.  Sending someone from hospice to the home (clergy, social worker, an RN or LPN) who is trained to support and guide the family through the last moments of dying. Not for medical intervention but to support the family in the normal, natural dying process.  They would provide care and support through the death until the funeral home arrives. You can call this person a doula as that is the role they would be filling. At present there is no reimbursement for that kind of service. I would like to see inpatient facilities reimbursed through the death, not just for symptom management. Most symptom management can be done at home anyway.

What I really think will happen (and is happening to a small degree) is that other options to end of life care will emerge but not under the name of Hospice. I am seeing residential care facilities that only care for the dying springing up around the country. I see end of life doulas who can be hired to support and guide the family.

How we die doesn’t and won’t change. Physiologically our bodies will die the same way they always have. How we interpret and how we see that dying, and what we do and how we react to that process, can and will change.

There are many individuals who are trying to provide the original hospice philosophy of support, guidance, teaching, and knowledgeable end of life care in hospices throughout this country. Unfortunately they are frustrated by the current medical, regulatory, and corporate systems that impact their ability to provide the care they want to give.

Something more about "...the Essence of Hospice"...

Chaplains, Social Workers and Nurses have been using my dvd set, NEW RULES For End of Life Care to educate their staff about how caring for someone at the end of their life is different than caring for someone who is going to get better.  Dying is not a medical event, it's a social, communal event.  There is a pdf that can be downloaded and printed at the end of the dvd which covers all that is discussed in the film.

photo credit:  Vinoth Chandar

 

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Blessings!