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.


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. 

 

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.

Death As The Enemy
by Barbara Karnes, R.N. | October 17, 2016

QUESTION: Could you write about why it's so difficult for people to start end-of-life care conversations?
I was just on the phone with a woman who told me the doctor told her friend he was surprised she had lived this long with the disease having spread into other areas as much as it has. In the next breath she was telling me about CAT Scans to determine another round of radiation and possible clinical trials to be done.

As I talked about the ineffectiveness of further treatment, the diminished quality of living that comes with further treatment, and calling hospice versus continuing with the home health visits, I could feel the tension building on the phone. This was not what this woman wanted to hear from me. She told me of a National Public Radio program about a woman who was cured of her cancer of the lung by a new drug used in a clinical trial.

I realized as we talked my advice of getting hospice involved, considering stopping treatment, and living the life that is left in the best possible way, was not being well received.  The patient may have been asking what it was like to die and what does the future hold, but dying was not part of the caregiver’s agenda.

I started the end of life conversation but backed off after reading the listener’s reaction.  Actually, if I had been face to face and had more medical history I would have pursued the conversation even though the caregiver was uncomfortable -- but that is me. Unfortunately, too many medical professionals say what the caregiver or patient wants to hear, and not what they need to hear.

As professionals we know how to deal with tears, fears, questions, uncertainties, lack of knowledge, and wishful thinking. We have knowledge of which diseases have the best chance of being “fixed” and what “fixed” really means as far as remission and reoccurrence. Yet with all of these skills we hesitate to tell the patient/family what we really think. Way too often we encourage medical interventions until the last breath (including codes and ventilators).

The front line of truth telling is the physician. Much has been written about the challenges facing the physician as end of life approaches. Lack of training in end of life, a sense of failure if not offering something, the idea that what is learned from one patient, no matter the result, can be applied to another with better results. I think all of these factors affect the physician’s ability to say “There is nothing more we can do medically. Let’s talk about how we can keep you comfortable and living well for as long as we can.”

Healthcare workers who are not physicians are hindered in speaking of end of life issues with a patient or family by an attending physician's not initiating the conversation. Once the physician has opened the door the rest of us can step in.

No one wants to be the bearer of bad news.  Americans are a death denying society. We view death as the enemy and a failure: something to be feared and avoided. Like ostriches we hide our head in the sand to keep from addressing the fact that we are all going to die someday (just don’t let someday be today).

While there are dynamics to dying from disease or old age, dying is also unique to each person. The closest we can get to determining a prognosis is months, weeks, days, or hours. There are too many factors involved in dying to be so specific as to say six months, three weeks, or twenty four  hours. This inability to be specific, and the individual uniqueness, makes the job of addressing end of life issues all the more difficult.

I think the fear of telling a patient and or family that nothing can be done, that we are talking about months/weeks/days of life keeps us healthcare professionals from saying just that. What if we say a person is entering the dying process and they aren't, or don’t die when we think they will? What if we are wrong? Looking at the emotional pain we will have caused can keep us quiet.

A “safe” area of conversation can be found in Advanced Directives, speaking of end of life before faced with end of life. Most medical facilities are now required to ask if Advanced Directives are in place but it is more often than not hurried over.

It would be helpful for the patient, family and even the physicians if there was an Advanced Directives “talk” before treatments are begun to hear from the patient what their end of life wishes are before they are actually at the end of their life. Having that conversation, physician and patient, before treatment would make it easier for the physician to reopen the door when treatment options are futile.

Something more about Death as the Enemy...

In my book The Final Act of Living, I offer information about Advance Directives and their importance.  A Time to Live focuses on how to make the most of the time patient has - the gift of time.  Could someone you know benefit from the help offered in either of these books? 

"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.

 

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