Something to Think About: a blog on end of life
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.
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?
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.
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
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
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.
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!
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...
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