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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“Holding Their Hands through Life – 3 Ways Nurses Deliver Patient-Centered Care”

What a special moment it is waiting in anticipation to hear that new cry of life, and a privilege to kneel at the bedside when a life leaves without regrets.  As nurses, our relationships with patients has always been unique because we are often the only healthcare professionals holding their hands through life.  We share the honor of participating in the joys of our patients improved health, and shed common tears at times when bad news is delivered that adds to their sorrows.  It is these experiences that have shaped our views and understanding that caring for a human being is truly a multidimensional experience.  It must involve meeting their physical needs with a healing experience, understanding how to meet their psycho-social to support their mental health, and finally seeing that each person has a spiritual component to their being that guides their actions and interactions.  These shared experiences with those we serve are the foundations that form the patient-centered care we deliver to our patients as we hold their hands through life.

Patient-centered care doesn't seem like it should be a foreign concept that people struggle to embrace, rather it should be the norm to have a patient's choice be considered when delivering care.  It actually sounds like a prudent and wise thing for organizations and clinicians alike to do for those in their care.  The reality is that this approach to patient care has recently been gaining resurgence in health care circles, and being defined clearly by agencies who desire to improve their quality engagement with the patients and families they serve.

• One of the agencies is the IOM (Institute of Medicine) who defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."  

• Next, the American Association of Colleges of Nursing defines it as, “To recognize the patient or designee as the source of control and full partner in providing compassionate and coordinated care based on respect for patient’s preferences, values and needs”.  

• Finally, the Beryl Institute defines the patient experience as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care”.

1.   Healing the Body – The Evolution in Caring

There are numerous other organizations both nursing and non-nursing that may have a variation on the definition, but the theme throughout all the definitions is that the patient is the core decision maker in their own care.  Another aspect of patient-centered care must also be to look at the patient as a whole person with varying physical, social, and spiritual needs that must be addressed to support delivering a patient-centered care approach.

So why does this seem like such a strange concept that is now just coming to the forefront of the medical community?  Since the inception of our great nation patients have been on a roller coaster of change that has been primarily driven by the influence coming from the schools of medicine.  These institutions have often set the standard for the patient provider relationship by enlisting the use of professional boundaries that often drain the humanity out of the delivery of medicine.  The focus has also been directive instead of participatory, but with the emergence of a pay for performance system of medicine the consumer will soon be in more control concerning how the relationship is built.  Even though physicians have had varying relationships with patients throughout the decades, the nurses’ role has always been a consistent source of support and bedside presence as we've held the hands of our patients through life’s challenges.

Today’s nurses are the offspring of one of the first nursing pioneers (Florence Nightingale) who started this concept of patient-centered care when she focused on caring for the physical needs of wounded soldiers during the Crimean War.  She worked tirelessly with other volunteers to improve the conditions of the wounded soldiers by reducing their risks of infection by promoting adherence to infection control standards.  According to Stephen Paget in the Dictionary of National Biography, “Nightingale reduced the death rate from 42% to 2%, either by making improvements in hygiene herself, or by calling for the Sanitary Commissioner”.  The influence and legacy that she created is now recited at most nursing graduations throughout the United States, and is known as the “Nightingale Pledge”.

"I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care."

Florence Nightingale’s experiences helped her to understand that physical needs are an important component of a person's being, and therefore tried to develop  approaches to care that supported this premise. She later used her influence to establish the first non-religious nursing school in London that remains in existence today.  Her dedication to caring for the human spirit by tending to both their physical and educational needs was the first step in helping today’s nurses deliver the patient-centered care.  By being that person at the bedside holding their hand, nurses can attentively listen to their needs of those they serve.

            2.  Understanding the Mind – Hearing Your Patient’s Voice

It was a day much like any other where I was busily trying to create my schedule for the day of who I was going to see.  Not long into my routine I received word of a new patient I was going to follow at a local skilled nursing facility.  As a hospice nurse I had worked with patients and families in both the home and facility, but had recently chosen to focus my efforts on helping the end of life population we served in the nursing homes.

After ending the call with my boss I headed over to the facility where I met a gentleman named Gerry.  He was my new hospice patient on my caseload that appeared as a fatigued skinny man with scraggly whiskers on his face.  As I dove into our first meeting, Gerry explained about how his battle with cancer had been difficult, and that the doctor had finally let him know that his curative options had run out.  As he relayed this story to me I could see the sadness in his eyes, and heard the disappointment in his voice.  Trying to stay in the moment with him I asked what was it that I could do for him that would make him feel better?  He quickly stated, “I want a whopper”.  Did you say you wanted a whopper?  Yep, that's what I want. He had been diagnosed with a metastatic form of cancer that had quickly spread throughout his body, made him require more needs than his family could provide at home, and left him with some significant pain and symptom management issues.  If he was going to be stuck in this place he assured me that he wanted some of the comforts that made him happy.

There was a bit of a challenge at first with granting his request because his disease progression had diminished his ability to swallow, and put him at a severe risk for choking and aspiration.  After some negotiating with the facility staff, they agreed to let him have as many whoppers as he wanted.  With that solved I thought we were all set, but there was one more hope both he and his family shared.  When Gerry was at the last part of his life he wanted to go home to die. 

It was late Friday afternoon when I got a call from Gerry’s sister concerning how we could transfer Gerry home that day.  As I heard the news I thought things always seem to be more challenging on Fridays.  Thankfully, this time everything went off without a hitch.  We were able to get him home to his sister’s house that had a beautiful 180 degree view of the Puget Sound, and provided a bed that allowed us to raise his head to take in the view.  Later that evening Gerry passed away on his own terms by having his last whopper days before, surrounded himself with his loving family that night, and looked at the view from the place he called home.  It began by listening to his hopes, and ended by making his wishes come true by assuring he was always in control of his care.

3.  Comforting the Soul – A Token of Appreciation

During these transitions in life that our patients experience, nurses have always been that constant presence as they experience the resilience of the human spirit.  So much of the way a person heals is directly related to their beliefs.  Even for those individuals who claim not to subscribe to any organized form of religion or oppose it all together, they have an inner drive that makes them tick.  Whether you want to call it the soul, spirit, or just your inner self it is an important aspect of understanding and recognizing that care needs to be holistic.  Holistic nursing is defined as “all nursing practice that has healing the whole person as its goal” (American Holistic Nurses’ Association, 1998, Description of Holistic Nursing)

As nurses we must respect these beliefs, and be the advocate our patient needs to help them through the challenges.  It may be allowing them to wear garments that represent their beliefs, choosing to have a bloodless surgery, or coordinating for a spiritual guide to conduct whatever services they need to support their beliefs.  By supporting these actions we aid in their healing.

She was sitting in a rocking chair when I entered the room, and I could see she was knitting something in her lap.  It was a smiling lady in her late 80’s who began our first discussion by speaking about her beliefs.  She was a woman of faith, and our visits often turned to discussions concerning her beliefs, and what was going to happen when she passed away.  Even though she presented with confidence, she was quite fearful in our times alone.  Making her the center of our conversation, and encouraging her to focus on the visits by her family was the way I tried to calm her fears.  Over the next few weeks I spent more time with her focusing on reducing her anxiety through conversation, music therapy, and providing medication that aided in reducing her fears and discomfort.  Not long after our last visit I was able to meet with her family who presented me with the gift she was making on the day we met.  It is the creation that is displayed in the picture.  It holds a special place in my heart and my home.  Geraldine was a special and beautiful woman that forever touched my life because I was able to understand the importance of her beliefs, and how they impacted her thoughts, her actions, and the choices concerning the care she received.

As nurses we supply the largest manpower component in health care, and can be the voice of advocacy for our patients.  Patient-centered care is not only about ensuring that our patients are involved in their care, but that we are involved with them in the journey.  We must fully comprehend that delivering patient-centered care takes the ability to include all aspects of the person in their care.  It may be ensuring that they understand their conditions by showing dedication to providing consistent quality care for their physical needs.  When we build that trust and take the time to listen to their needs then we can create a continuum of care that delivers a holistic approach that is able to respect the uniqueness of that person’s physical, mental, and spiritual needs.  Finally allowing us to meet them where they need us the most.

It’s time for nurses to lead the charge in changing the face of health care by using a patient-centered approach in creating a new normal where it will be expected that patients receive care based on their individualized needs.  By understanding that patients need a multidimensional approach for their care involves seeing the wound, understanding the fear, and supporting their ability to connect with the beliefs that contribute to improving their care.  When we successfully ensure that every patient receives this same care we’ll be on our way to creating a better system of care for all.  It will be a place where people will be known, understood, and are provided empathy to ensure that they remain at the center of their care as we hold their hands throughout their journey.

This post was written as part of the Nurse Blog Carnival. More posts on this topic can be found at Big Red Carpet Nursing. Find out how to participate.

 

Click here to visit Living Sublime Wellness.