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.
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...
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
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
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
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.
Dear Barbara, How does a person transition from caregiving after my loved one's death to restoring my balance, focusing on the new role for my life.
Grief is not about the person who has died. Most religions of the world teach that being dead we are in a better place. Grief is about us and how we react and feel about our life with someone we care about not in it any more. Part of grief is figuring out how to rebuild our life now that a huge part of it is missing. Loss has forced us to change.
Grieving, as so much of living, is hard work. Finding new activities, new direction, new routine, and new focus while your heart is still crying is one of life’s major challenges.
Really, each person finds their own way. There are as many ways of figuring out how to go on living as there are grievers. For those that were a full time caregiver through an illness that ended in death there are additional hurtles.
When we have devoted any length of time to caring for a person that requires a great deal of our time and energy and then that purpose in our life is gone we often flounder. We had developed a routine to our daily life and now there is none. What to do to fill the day, how to find, let alone create, a new routine are questions confronting us.
We are generally very tired, physically and emotionally, by the time our caregiving is over. Our thinking processes are not what we are used to. We are tired, weepy, aimless, not our usual selves. We are way out of balance.
Be gentle with yourself. Don’t have expectations of how you SHOULD be, what you SHOULD be feeling and doing. There will be functioning days, there will be nonfunctioning, cry days, and I think I’m doing better days. Cry days will gradually lessen (but not on any time frame other than your own).
For a while you will not feel like visiting, being with people. People will come to you but it is hard for you to reach out. Eventually you will begin to want to be with others again--a visit, a movie, a lunch.
Eventually you will begin to think about how you are going to fill your days now that they are not filled with caregiving --a job, volunteering, a trip. Think about what you would like to do now that you can. Maybe now it is time to get yourself in shape with better eating habits and exercise.
Think about what makes you happy, what relaxes you, what brings you fulfillment and joy. As you rebuild your life (and that is your task now) fill it with activities and direction that has meaning for you. This is literally a starting over point. As you leave the deep emotional pain of grief and enter the “what am I going to do with my life” part you have the unique opportunity to embrace life in a different way.
We tend to focus on the pain of grieving, it’s emotional lows. I am offering another side, the far side of grief, as an opportunity to direct the life you have with the life you want. Let the way you figure out how to go on living be the testament to the love and loss that you are experiencing.
Something more about Reaching for the Far Side of Grief...
Often in my Facebook Group, End of Life Care and Bereavement, members will reach out when grieving. The Griever will be met with tremendous support. I invite you to join us. It's a warm place.
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