Holding the Hourglass – 3 Steps Nurses Can Take to Support End of Life Discussions

Not very many people have an hourglass in their home any more, but for some people as children it represented a fascinating object they watched as the granules drained out into the other side.  Life is similar to that hourglass because the moments of our lives continually drain like the sand, and eventually result in our passing.  Death has become more of a challenging subject to discuss in our culture throughout the decades, and now is often treated like the elephant in the room.  For those of us who call ourselves nurses, it can be something we encounter often in our careers.  Some nurses struggle with the topic of death, and experience angst at having to care for a patient at the end of life.  In order to provide empathetic patient-centered care, nurses need to be comfortable participating in conversations with patients who have end of life needs.  Therefore, it’s imperative that nurses take these 3 steps that will help to initiate end of life discussions with the patients in their care.

1. Seeing the picture – Developing Awareness and Advocacy

What do you see?  In this picture there is an old lady and a young lady.  Just like looking at this picture we can see different things in the patients that are entrusted to our care.  The first step in being successful at approaching end of life discussions is being aware the need exists. 

She was an 89 year old little lady who came in through the Emergency department complaining of back pain, and feeling like she couldn’t catch her breath.  As the team started the work her up for chest pain, she received all the customary evidence-based interventions.  Baby aspirin, IV, EKG, oxygen, and lab work.  When the results came back it was conclusive that she had experienced a cardiac arrest precipitated by a blocked artery.  After speaking with her and her family the decision was made by the surgeon to do bypass surgery.  She was stabilized with medications through the night, and was the first case in the morning.  After she and her family said their tearful goodbyes she was whisked off to surgery.  An hour later the surgeon came out to the waiting room hesitantly, and began to share the news that their mother (“the patient”) had a massive stroke during surgery.  She was now on life support, and sent to the ICU.  Her family was now confronted with the challenging decision about removing her life support or watching and waiting.  Not long after she returned to the ICU her family made the choice to stop the lifesaving interventions, and allowed her to pass away naturally.

This picture is one that many of us have seen all too often.  Chronically ill patients like this come through the hospital doors without truly being offered the care they need or what is appropriate for their condition.  As the nurse caring for these patients, you need to be able to identify these patients in your care.  That means being aware of the trajectory of their disease progression, and the realities of what can actually be done for the patient.  You may not be the one to initiate that conversation or provide the news concerning the prognosis, but as a nurse you must understand the process to be prepared to have end of life discussions with your patients.  Was there another alternative in this case?  Is this what the patient and family wanted?

2. Understanding their Story – Listening to their heart

At the bedside or in any discussion with a patient, nurses must listen to what patients are saying.  It is no different dealing with patients that have a terminal prognosis.  It is important at these times to be acutely aware and tuned in to hear what their heart is saying.  All people have the issue of death in common, and it is often a theme that is natural for people to ponder.  Thoughts that make people think about how it will happen, who will be there when it occurs, or how will it feel?  These are a normal progression of thoughts for people facing mortality.  As nurses we have to be ready for these conversations, and approach them with an empathetic ear.  We have to be willing to put aside our own personal judgments and feelings, so we can be with them in the moment as they start processing their emotions about their death.

A process where they are learning to cope with the challenge they face.  This process was first famously outlined by Swiss Psychiatrist Elisabeth Kübler-Ross in her 1969 book, On Death and Dying, and was inspired by her work with terminally ill patients.  Motivated by the lack of curriculum in medical schools on the subject of death and dying, Kübler-Ross examined death and those faced with it at the University of Chicago's medical school. Kübler-Ross' project evolved into a series of seminars which, along with patient interviews and previous research, became the foundation for her book… The stages, popularly known by the acronym DABDA, include:

1. Denial — One of the first reactions is Denial, wherein the survivor imagines a false, preferable reality.
2. Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?".
3. Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable against another human agency to extend or prolong the life. People facing less serious trauma can bargain or seek compromise.
4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
   During the fourth stage, the individual becomes saddened by the certainty of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
   In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions. http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

Working effectively with people at the end of life requires an understanding of this process, and being able to listen for the cues to where the person is in their journey.  By knowing the stages you can recognize the emotions the person is displaying, and use that information to initiate a conversation that matches their readiness.  After establishing a trusting dialogue you can be the supportive caregiver that encourages them to make their wishes known to those involved in their care.  Having access to this information is necessary for introducing resources to the patient and family that will support achieving their goals of care by utilizing a patient-centered approach.

Delivering Hope - How an explanation creates a comfortable journey

Patient-centered care according to the IOM (Institute of Medicine) is “Care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."  Not only must nurses understand their patient’s end of life needs, but they must be knowledgeable concerning the resources available to support their care.  Nurses can explain how resources are available that can address their physical, emotional, and psychological needs. 

Whether you’re in the hospital at the bedside or in the community a nurse’s main role is to provide information to support the understanding of the people they serve.  The end of life journey is difficult for any family because of the realization they experience when they consider the loss of the person they love.  As nurses we can support them in this struggle by painting the picture of the journey.  What will the progression of the disease look like, how will they feel, and what can be done to keep them comfortable?  Explaining that when they hold their loved one’s hand in may be cold or the color may change, they may sound differently when they breathe, or they may say things that don’t make sense.  It’s important for the nurse to normalize the process, and to encourage those involved in their care to express their feelings to the patient. 

Dealing with patients at the end of life can test our personal strength as individuals, but being there to support patients and families at such a fragile time in life is an honor.  Therefore, don’t shy away from having discussions with patients at the end of life.  As their nurse see their need, listen to their story, and deliver the hope they need by being that caring presence that ensures they have a comfortable journey. 

 This post was written as part of the Nurse Blog Carnival. More posts on this topic can be found at

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What is the Role that Could Heal Healthcare??? 5 Ways Nurses can be the Answer to Reform

Nurses have a long legacy of caring for our fellow citizens.  From the originator of our profession (Florence Nightingale) to modern day men like me, nurses everywhere hold this privilege to care for the needs of others as what defines us.  The role of the nurse has expanded greatly over the years as our influence has impacted almost every aspect of medicine.  Nurses have become versatile professionals that can be the answer to healing our current system.

Here are 5 ways that nurses could make an impact in changing the face of health care:

We are the Advocates - Currently there is much discussion in health care about empathy and patient centered care, but nurses have been providing a holistic approach that focuses on delivering care to the individual since the Crimean War.  We know what it is to provide dignity in undignified moments, and to care for that patient as your own family.  With this knowledge and experience we serve as the best advocates for knowing what patients and their families need when they're in our care.

We are the Balance - Our schooling requires that we grasp the concepts of what makes a body healthy and sick, but we also come to understand that sometimes the answers may be elusive unless you stop to listen to the patient.  Many of us have learned over the years that patients are the best diagnosticians, and believe that trusting what patients and families tell you versus what may be in a published study or book.  As nurses we provide the balance necessary to humanize medical science, so people are able to receive competent compassionate care.

We are the Continual Presence - Very few other health care professions interact with patients and families like nurses.  We are found in every aspect throughout the continuum, which leads to our thorough understanding of what is necessary to create positive outcomes for those in our care.  We are found at every stop along the path because we care for both those being born and those leaving this world. 

We are the Foundation - Our long and proud history has caused us to be the only discipline who is asked to function in multiple capacities.  At times we may be the social advocate figuring out how to keep the lights on for those we serve, or may be the spiritual presence as we hold the hand of one who's life is moving on.  As the foundational role in medicine we represent the largest number of any health care profession.  Therefore, we need to use our voice to build the foundation of a system that will meet the needs of all we serve.

We are the Answer - Nurses are continually put in autonomous roles where they have to think and lead quickly to save lives and resources.  Most of us are comfortable in these situations, and have used this ability to move into greater roles of responsibility.  Now is the time for nurses to take a more important role in changing health care by becoming the leaders of tomorrow.  We need to provide our expertise in caring for patients, our understanding of what is necessary to give staff the tools to effectively deliver care, and our perspective of what the answers are to creating a system of both quality and satisfaction for those we serve.

It is my duty
Dawn Butler, RN
(Pennsylvania)
I walk through those doors with pride,
Who's life will i save tonight?
Someone is waiting for me,
Someone is alive today because of my duty.
Sometimes we cry cause we can't save them all,
God sometimes won't let us interfere when he calls.
A baby's first breath when he looks at me,
The joy of my first delivery.
The tear i wipe a way with my own hands,
The life ending of a gentle old man.
The night seems so dark and the morning so bright.
Being a nurse you see life in a different light.
Who will i save tonight?
Who will hold my hand during their last breath with no fright?
Who will enter this world on my shift?
How many mothers will greet their babies with a kiss?
I don't know who these special people are
but i will meet them with every call
I will hold them tight and help the pain
I will hold them up when they feel faint.
I will be strong when i am needed
That is my job, I am a nurse..that is my duty. 

My hope is that those who read this believe as I do that nurses can be the positive force to drive change in America's health care system.  I would encourage my fellow nursing professionals that each of us look for new and innovative ways to create a greater impact in our spheres of influence, and step up to the plate if you really want to see things change.  

Take care.   Dave

Breaking Addiction to Missiles to Improve Healthcare

“During the Korean War, the Navy kill ratio was twelve-to-one. We shot down twelve of their jets for every one of ours. In Vietnam, this ratio fell to three-to-one. Our pilots depended on missiles. They lost their ‘dog-fighting’ skills.”*

~ Jester, Top Gun, 1986

I remember seeing the movie Top Gun in the mid-1980’s and how this quote struck me … and believe it or not … it has informed much of my work in healthcare.

Fifty-one years ago (1964) the Hippocratic Oath was rewritten by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, to include (excerpts):

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.

… may I long experience the joy of healing those who seek my help.

With this is mind, and in the blog post How a lack of empathy affects our healthcare I made note …

“Thirty years ago, medical schools taught that the most important component of a mental health healing encounter is empathy, human connection, and authentic relationship between a physician and patient.” 

And yet more recently we healthcare leaders have evolved the healthcare delivery system to include:

·         Clinicians triple booked every 15 minutes

·         8 to 12 minute office visits

·         The I-Patient (to borrow from Dr. Abraham Verghese) replacing the actual patient

 

·         Patients being dehumanized and becoming a diagnosis rather than a whole person

·         Clinician focus turning away from the human being before them and toward electronic health records, target organs and test results

·         Technology becoming the solution focus rather than a tool

·         Care teams held to the same productivity standards as clinicians (as noted above) and yet providing less continuity for a patient with “their” clinician

·         A model which rewards excessive tests and invasive procedures

·         Physicians and nurses burningout and worse

We have switched from “dog fighting” i.e. avoiding overtreatment, establishing and ensuring human connection and authentic relationship, and finding joy in healing to “missile dependency” i.e., the “evolved” model described above.

In our effort to make things better we have forgotten why we are here in the first place.  We have sought “missiles” to improve the broken system. We have lost our way. And we are harming those we are honored to serve.

If we truly want to improve the health of our patients, families and communities, it is time to break our addiction to missiles and reconnect with the Hippocratic Oath, what was taught in medical schools thirty years ago, and to our patients, families and communities. 

For only then will we truly innovate healthcare.

It’s not too late and yet long overdue. 

 

 

* As both an animal lover and someone who desires peace this analogy was challenging and yet hopefully lends itself to creating a compelling argument for the need for dramatic change and improvement to our healthcare delivery system.