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.


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.

 

Pneumonia, The Old Man's Friend
by Barbara Karnes, R.N. | September 20, 2016

Dear Barbara, I am having a very difficult time providing care for my father
as a critical care nurse. I almost lost him to pneumonia . My agency
insisted he not be treated and taking him to ER would cause them to
revoke hospice. He was treated with levaquin and his quality of life is much
improved. Who is right? Treat an infection or just let him die? He asked for
treatment.

The operative words here are “He asked for treatment.” There is your
answer. Our responsibly as health care workers and I will argue that it is
also the responsibility of family, is to provide what treatment or lack of
treatment a person wants, to respect how a person wants to live and how a
person wants to die. That is why Advance Directives are so important. It
tells everyone what you want if you can’t speak for yourself and it also
reaffirms what you want even when you can speak for yourself.

The problems (and there are several) generally lie in a person not having
an Advanced Directive, in people thinking they know what is best for others,
with family members not reconciling with the approaching death, and in
healthcare professionals concentrating on keeping a body breathing
(treating physical conditions and not looking at the person, the suffering
caused, and for what end).

When a person accepts the Hospice Medicare Benefit it is because the
person is physically at a place in their disease that cure is no longer
considered possible, that in a physician’s opinion the person has less than
6 months to live and that the patient is interested in comfort care for the
family and themselves. They have accepted the notion that treatment is not
the best option in addressing their physical condition. These circumstances
and Medicare regulations put a Hospice agency in the position of having to
say if you go to the ER and seek treatment you will not be eligible for
Hospice services. Hospice is bound by Medicare Hospice regulations and
rules.

The philosophy of hospice end of life care is to assist those people who
have reached a point in their disease process that cure is no longer
possible. The philosophy is to provide comfort to the patient and support to
the family during the last months through hours of life. Therefore---if
treatment is sought, (treatment that will possibly prolong life) the person is
considered not appropriate for hospice services.

Now, all this said, there are thin lines and points to debate, in what is
treatment to get better and treatment for comfort. Is pneumonia related to a
life threatening illness or is it a separate disease not related to the condition
that is the cause of approaching death? Is pneumonia really a very gentle
way to die and the “old man’s friend” as so many say?

What we do know is pneumonia left untreated in the frail will probably result
in death. If a person is dying (they are on hospice therefore considered to
be dying) and they develop a condition that may result in death what is the
advantage in treating that condition? I have seen legs amputated and heart
surgery done in people with severe life threatening illness unrelated to the
surgeries. “Why” has always been my question. What was accomplished in
doing surgery to amputate a leg or perform open heart surgery on a person
with end stage cancer other than further suffering? These two incidents
actually hastened death along with increasing the suffering.

So back to your question of treatment or no treatment as end of life
approaches---the right answer is to do what the patient wants done. It is not
really for the family or the physician to decide. It is the patient’s choice.
Confusion comes when no one knows what the person wants.

Something More about Pneumonia, The Old Man's Friend...

When a family is clear about what their loved one's wishes at end of life are, everyone is more relaxed.  The care is different.  There aren't any "what-if's", secrets or confusions.  Have the conversation.  Write your Advanced Directives.  Do it for each other.  I have information and ideas in The Final Act of Living.

Abstain From Doing Harm
by Barbara Karnes, R.N. | September 6, 2016

Dear Barbara, Is it possible to get too much "treatment" for an illness?

Our medical treatments seem to be based on the premise of “if we can, we will.” I think that just because we can do something medically doesn’t mean it is in the best interest of the patient to do it.

Medicine (physicians, hospitals) treat diseases that people have. That is what doctors are trained to do and what hospitals have the capability to do.  And this is good. That philosophy has brought humanity from blood letting, not washing hands, and witch doctors to all the amazing medical advancements we have today. 

HOWEVER, humans have suffered in the process (and I mean that literally, suffered). Lost somewhere in the decades of modernization is the Hippocratic oath:  “Abstain from doing harm”. The medical establishment is doing a lot of harm in the name of advancement. “What I learn from one patient, though I fail, I will apply to the next patient” is a theme spoken by many physicians and medical schools. But do we want to be the medical establishments guinea pig? Some of us do, others don’t. Here is where choice comes in. If we as patients are given options based on accurate facts, knowledge, and realistic goals we can make knowledgable decisions on how we want to live our life (and dying is still very much a part of our life; it is our final experience in living). Unfortunately most of us aren't told about goals, and we don’t ask.

Where is medicine that treats PEOPLE that have diseases? Where is medicine that looks at the PERSON and finds out how they want to live and die based upon their physical condition. Sometimes it is there; some physicians are trying. But more often than not our personhood does not enter into the goals the medical establishment has for us when treating our illness.

Can we get “too much treatment”? Yes, I think we can.

Something more about Abstain From Doing Harm...

There are many, many End of Life nurses, chaplains, volunteers, ect. who share in my FaceBook group, End of Life Care and Bereavement.  As a community we discuss issues like this.  I always respond and welcome the conversation.  Join us!

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Blessings!