Something to Think About.
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.
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, 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, 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...
Barbara, How is dying different for those who have no faith...and how do we support them while respecting their position?
This question can be expanded to also ask: “How do we support others who believe differently than we do?”
I am going to assume “no faith” means not believing in a God or an afterlife, believing that life as we know it just ends. I don’t think dying is any different for those with “no faith” than it is for those “with faith”. We die the way we have lived and there are few death bed conversions. Facing the end of our life does make us look at life and its meanings, but we do tend to examine our beliefs from our personal perspective. We look at our life and how we have lived it from the vantage of the belief system we have developed. As we approach death we do not begin to change what we have lived so hard to believe.
We tend to think a person with no belief in an afterlife or God will be more frightened as death approaches than someone who believes life continues, just in a different way. I do not find that to be true. Fear is present for all of us as we approach death. Not because of our belief system but because we are facing the unknown. We are all afraid as we approach death, no matter our beliefs, no matter how hard we try to deny that fear.
I have found that some people return to religious beliefs abandoned earlier in life. Catholics go to confession, others counsel with a minister or a rabbi, but most of us hold to the belief or non belief we have accepted or developed throughout our life.
Now, how do we support a person while respecting their position? Supporting a person does not mean or even imply that we share our personal beliefs with them. Supporting a person does not mean talking about life after death or talking about God. Supporting a person means being a presence, being a listener (not a talker), not having answers, but having compassion.
Faith or lack of faith is not an end of life issue. It is a personal, living choice. As caregivers we must remember we are privileged to be part of this person’s, and in many cases this family’s, experience. We are there to support, educate, nurture, and guide. We are not there to change.
Something more about Dying Without Faith?...
Barbara, My husband's 94 year-old grandma just passed. Our family has lived with her for all of my daughter's life. We are strong in faith but I was wondering if there are more of your books available for the grieving process or others you would recommend as I have a child grieving as well.
Children and their grieving process is affected by their age and their maturity level. We all grieve, no matter our age, but our understanding of this normal life experience varies with age. My Friend, I Care, my grief booklet, addresses the normal grieving process and is written simply. I'd say anyone, adult or child, with a reading level of 4th grade will benefit from it's information.
Jim Boulden has age specific booklets for children. You can find them on Amazon.
Something More about Grieving for Grandma...
In New Rules for End of Life Care, I talk about how families used to live in multigenerational houses. The circle of life was played out in a normal, natural way. There are births and their are deaths. It pleases me that your daughter has had the good fortune to live in a multigenerational home.
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