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.


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.

 

"If They Would Just Eat, Everything Would Be Better"
by Barbara Karnes, R.N. | October 3, 2016

Dear Barbara, what are the physical changes in appearance during the dying process? Also talk about not forcing food upon the dying.

The physical changes in appearance during the dying process begin months before death actually occurs. Generally weight loss is a prominent factor. Gradually not eating is one of the main factors in the dying process and the accompanying weight loss is a natural a part of that process.  Jaundice, a yellow tinge to the skin, and/or edema (fluid in the skin tissues) may be associated with liver and kidney disease. Each specific disease may have its own accompanying changes in physical appearance. I have just touched on some frequent changes.

The real changes in appearance begin in the weeks to days before death. Weeks before the overall skin color can become “pasty” looking and pale. In the days before death mottling begins to occur. Mottling is the bluish, dark color to the hands and feet that gradually progresses to the knees and back. It is the result of circulation in the body decreasing, and blood pressure dropping. In the hours before death there is often an overall ashen color to the skin.

“Talk about not forcing food upon the dying”. Months before death from disease and often years before death from simply old age a person’s eating habits change. They gradually begin eating less and less. Food is what keeps our body going. It is where we get our energy and grounding. If the body is preparing to die it will naturally cut back on what it eats. Beginning months before death a person will stop eating meat, then it becomes fruits and vegetables, then soft food. By the weeks before death  a person is barely eating anything. Ice cream and liquids are often the best they can do. Generally, in the days before death, a person will not be able to eat anything including even water. All of this is part of the normal way a body dies.

One of the hardest things for people to understand is that when a person has entered the dying process it is okay not to eat, that literally the person reaches a point where they CAN”T eat. They just can’t do it even when they want to.

For us, the people involved with a loved one approaching death, our heart tells us that if they would just eat everything would be better. We know they have to eat to live so if we “make” them eat they will live. There are several factors at work here and a big factor is whether the person eats or not the disease, which can’t be fixed, will still progress and the person will die. Eating will not make things better. In fact artificial feeding (feeding tubes, a gastrostomy) may make matters worse, creating more complications than benefit.

When addressing the not eating, not enough calories for maintenance that occurs naturally as end of life approaches, my recommendation is to ALWAYS OFFER FOOD, just don’t force the food. Offer favorites, offer liquid supplements , offer water but accept what is or is not eaten. Nothing bad is happening at this time in the dying process. What is happening is part of the normal, natural way that people die. It is us, the watchers, the ones who don’t want our loved one to leave us, who don’t understand the natural dying process that have a new challenge. We are the ones who have to learn that the body of the person that is dying will stop eating and processing nutrients and that the disease will continue to progress no matter how much we intervene.

Somethiing More About "If They Would Just Eat..."

For a more comprehensive account of what end of life looks like and how to care for someone at the end of life, take a look at my DVD kit, NEW RULES For End of Life Care.

 

Unnecessary Suffering and Indignity
by Barbara Karnes, R.N. | August 9, 2016

Dear Barbara: I heard your Art of Manliness podcast. It was very
enlightening. Thank you. I recently read a NY Times article, and felt it
described “labor” very differently than the peaceful/delusional version you
described. I’m curious of your reaction...
NYTimes: System Failure
http://opinionator.blogs.nytimes.com/2016/02/06/system-failure/

Thank you so much for sending me this article. What was my reaction? I
shared it to my Facebook End of Life and Bereavement group. On it I
wrote: "A good read. Thank you for sharing this with me. How can we make
physicians and the hospitals they work in more sensitive to end of life. This
experience is happening country wide. It is not what most people want, so
why are we letting it happen? I've been advocating for thirty-eight years yet
some days I feel we are going backward instead of forward. Dying is not a
medical event. It is a normal, natural part of living. Why can't we in the
medical arena recognize there is a time to stop and let life come to it's
natural end---the operative word here being natural. I guess this article
definitely touched a nerve in me.”
As you can see I become angry and frustrated when people, through the
ignorance of their families or the medical professionals, have to end their
lives with unnecessary suffering and indignity. What was described in the
article is not how most people want to die. Yet because we all like to
pretend that we are never going to die, Advance Directives are not made
before they are needed. And when they are needed we are generally too
sick to make rational decisions or, sometimes, even to be listened to and
believed.
It is part of how our medical system works that that woman was in the ICU
for four months. I have to ask, why? Knowing what was happening to her
body even a non medical person could see she was not going to be fixed.
She would never be returned to any kind of a normal life. Yet apparently no
one questioned the goal of all the medical "treatments" she was receiving. I
think in most of these situations the goal is simply to keep the person
breathing.
We have the medical capabilities and procedures to keep a person alive
almost indefinitely BUT is it in the best interest of the person to do so? We
have to ask “what is living? “Why are we extending this life?” We should
always remember, “For everything there is a season, --- a time to be born,
and a time to die.”
This woman suffered until she was dead---needlessly. She received most of
her medical treatments because they were available to be done. Just
because we can do various medical procedures (dialysis, liver transplants,
even ventilators) doesn’t mean it is in the best interest of the patient to
have them done.

Something more about Unnecessary Suffering and Indignity...
Brett McKay interviewed me for his podcast, The Art of Manliness. He
focused on my book, The Final Act of Living. I give specific details on
making an advance directive so that the suffering and indignities
experienced by so many won’t happen to you. 

Signs of Approaching Death with Dementia
by Barbara Karnes, R.N. | March 15, 2016

Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?

There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.

The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.

Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight  for a description of all the signs of approaching death).

Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.

Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead.  Also beware of choking.

When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.

Something more...

Although I believe that I have answered your question, I wanted to link another blog article that I wrote to help solidify the information above. Alzheimer's Dementia Patients and Hospice.

Forcing Fluids At End Of Life
by Barbara Karnes, R.N. | January 6, 2016

I just read an article on the Independent.com website, http://www.independent.co.uk/life-style/health-and-families/health-news/... and am saddened by the impression that is given. The impression is that water is necessary in the days to hours before death. In reading the entire article you can see a suggestion that guidelines be established for end of life care but they didn't really show us the guidelines.

I was distressed by the headline:  ”Dying patients should be offered water in their final hours”. If someone stops there and does not read the article they will come away with a dramatic headline, possibly believe it, and then push fluids on the next encounter they have with a person that is dying--a friend, family member or a patient.

Here is what I have learned from my work with hundreds of people who were dying:  always, always offer and give food and water if the dying person expresses an interest in wanting food and/or water. I have also learned that there is absolutely no reason to RESTRICT or WITHHOLD water (which the article implies is happening) unless the person is non-responsive and/or at severe risk of choking due to swallowing issues.

Actually as death comes closer we tend to see that families have a hard time with the fact that the patient does NOT want to eat or drink. Not wanting to eat or drink becomes the issue that causes the most concern not that the patient wants food or water and shouldn’t have it.

In the natural dying process the appetite diminishes as does the want for fluids. The patient in the days to hours before death is generally not responsive and not interacting with the environment they are in (unlike in the movies) and it seems very odd to me that a person at that time is going to say they want a drink of water or even express thirst. I am more inclined to think the watchers of the person dying may express concern from their lack of knowledge about the dying process. We equate food and water with living and as we watch our special person approach death our thoughts turn to nourishment and hydration as a possible way to “fix” them.

The article mentions that “maybe an IV drip" needs to be administered for hydration. Again this is faulty information given by someone who clearly does not understand the natural dying process. Hydrating the person literally creates more discomfort. An IV means needles and restrictive tubing, but it is more than that. The body is shutting down, the kidneys are not working properly so fluid builds up in the lungs and tissues causing congestion and edema. This causes pain and more difficulty breathing. There is less oxygen exchange than if the congestion were not present.

What most people don't know is that in the normal dying process eating and drinking gradually decreases. Over a period of months before death actually occurs the body gradually stops eating. In the week to days before death their fluid intake has decreased drastically and they are eating little to nothing.

Dehydration is part of the natural way a person dies. It is a comfortable way to die. A person just goes to sleep. How does this happen? Dehydration increases calcium in the blood stream and when the calcium reaches a high enough level a person dies.  If the body can't be fixed and is itself dying why interfere with this natural process by forcing fluids?

The article, which originated in the UK, mentions that guidelines need to be set in place regarding appropriate end of life care. I certainly agree that guidelines for end of life care can benefit non-hospice (and sometimes even hospice) professionals. I just hope the guidelines are developed by someone who understands the normal, natural dying process and not someone with a strong medical model. The medical model tends to operate from the prospective of "because we can, we should". End of life care is not like caring for someone who is going to get better. Most people don't know this, even medical professionals.

Something more...

One of the reasons I wrote Gone From My Sight, The Dying Experience, was to educate families and professionals on this subject.  "Gone..." gently explains the signs of approaching death and how normal, natural death can happen.  

Pages

Sign up for our newsletter and get my Top 10 THINGS YOU NEED TO KNOW ABOUT APPROACHING DEATH.

Blessings!