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.


A Chemical Straight Jacket, Dementia at End of Life
by Barbara Karnes, R.N. | March 6, 2017

Dear Barbara, Will you talk about a chemical straight jacket at end of life? My mother is a dementia patient in a memory unit. Hospice now. They are giving increased Ativan & morphine to "keep her comfortable". We are in very last
days now. I don't want her to suffer, but somehow this seems wrong.

I have not heard the words “chemical straight jacket” before but I see the implication---controlling patient movements with drugs rather than physical restraints. Nursing facility regulations are very strict now about physically restraining agitated patients. Medication regulations aren't as strict if you can justify the reason.

I do not think there is a need for narcotics just because death is approaching. Dying is not painful. Disease causes pain. Dementia does not cause pain unless the person is actively hurting themselves or there is another physical condition that causes pain.

Part of the natural dying process is restlessness. There is a picking of the clothes and bed linen. There is an agitation of just not being settled, tossing, and turning. If that restlessness is not causing harm or putting the patient at physical risk then I do not feel medications are necessary. If the restlessness puts the patient in harms way (falling out of bed, injuring themselves) then Ativan or some relaxant seems appropriate.

Increased use of narcotics and relaxants as end of life approaches has become quite common in the end of life area---much to my concern. Why is this happening? One: end of life has become more medicalized, more intertwined with the medical system. We seem to have forgotten that dying is not a medical event. It is a social, communal event. (Another whole blog article) Two: I think there is a lack of understanding of the dying process. What is natural versus what is pathological (even among medical professionals). With this lack of understanding is the deep desire to keep a person comfortable. To help them approach death in as comfortable a way as possible. Not ending life but providing comfort until death comes. I think this is admirable but based in lack of knowledge. Our end of life professionals need to know this.

When working with end of life what we need to remember is to treat pain when present with as much medication as necessary to keep a person comfortable. And we continue giving that medication until the person’s last breath.

When a person is in the labor of dying and pain is not a part of the disease process, we do not need to begin a pain management protocol just because the person is dying.

Something more...

I have a new resource that would be perfect for this situation.  It's called HOW DO I KNOW YOU? Dementia at the End of Life.  It is specifically written to help families understand their loved one's process in the final months before death.  NEW RULES for End of Life Care is my DVD kit that has a whole section on narcotics at end of life.  So helpful for families during the final challenging weeks.

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.

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.  

16 Days Without Food or Water
by Barbara Karnes, R.N. | November 28, 2016

Barbara, My mother is in final stages (or is she?). Has not had food or drop of water in 16 days. She is in a coma state and receives morphine several times a day. Her only illness is dementia. I guess my question is how much longer can she survive?

Friend, I don't have an email address to write you back, so I am putting my response on the Blog in hopes that you will read it. Your question is so time sensitive this is the only way I could think to respond quickly.

Many factors will affect the time in which your mother dies. Her body size is the key factor, the heavier she is the longer it will take. Also I am wondering if the morphine is being given with IV fluids. If so then she is being hydrated and that can extend her life as well as contribute to increased congestion. If she has no other disease process I wonder why she is receiving any morphine at all. Dying is not painful, disease causes pain and dementia is generally not physically painful.

If she has had no water of any kind for 16 days I would expect her to die at anytime--maybe before I write this.

I do not have enough information to be specific as to the unfolding of your mother’s  dying process. I do know that dementia is not a disease in itself. It is a symptom of many different diseases. If there is no disease process other than dementia then her body is shutting down because of the lack of food and water. I know that sounds harsh but if she is in a coma (I am wondering what caused the coma?) then by not intervening with artificial feeding and hydrating you are allowing death to arrive in its natural, normal way.

Remember there is a huge difference between just breathing and actually living. I alway ask “Would you like to be attached to machines and just breathing with no other cognitive functioning?” Most of us would not. It is not wrong or a “sin” to refuse medical intervention when quality of living will not be an expected outcome.

In these last days with your mother talk to her as though she can hear and understand you. Tell her what she has meant to you. Tell her of your love. Use this special time to say goodbye.

Something more about "16 Days Without Food or Water"...

The use of narcotics with end-of-life pacients is confusing.  I clear up much of that confusion on my DVD, NEW RULES for End of Life Care.

 

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. 

 

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