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.
- 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?
- 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:
- Denial — One of the first reactions is Denial, wherein the survivor imagines a false, preferable reality.
- 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?".
- 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.
- 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.
- 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/
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
Click here to visit Living Sublime Wellness.