When Your Patient isn’t Ready to Die

I had been a nurse in the ICU for about two years when I received report on a patient with end-stage metastatic lung cancer.  She was approximately 25 years old, married, and the mother of three young children.  The patient, referred to by the alias Marda*, had come into the emergency room the day prior complaining of shortness of breath.  At the time of this writing, I do not recall if the cancer diagnosis was new, but my impression of the day’s events is that this woman and her family were blindsided by the news that there was nothing more that could be done.  The damage to her lungs was extensive, and the cancer had spread to her liver, brain, and lymph nodes.

When I assumed care of this patient, she was on a non-rebreather mask at 100% with oxygen saturation levels that indicated she would need to be intubated if she were to survive.  Because intubating her was futile in the face of her cancer, the patient and her family were confronted with the difficult decision of withdrawing care.  My role that day shifted from the usual of trying to keep someone alive to doing everything in my power to grant this woman a peaceful death.

As the physician made her rounds, I noticed Marda had the misfortune of being assigned to a resident, someone who had not yet polished the delicate skill of communicating devastating news.  She delivered the message with a clinical detachment that completely disregarded the emotional and social impact of its weight, and its effect was obvious.  The patient was inconsolable.  I knew that as the nurse, as the gentle shepherd on this woman’s final journey, I must provide the sensitivity and warmth missing from that particularly cold interaction.  Because of my inherent compassion and the heartfulness with which I infuse my practice, I had the power as well as the duty to soften the hard edges of the doctor’s words, “you are going to die today.”

Some things you never forget
This experience stayed with me mostly because of the way I felt while I cared for Marda.  It was just one day, but it is one I will never forget.  Her situation, her anguished cries, her fear, and her sorrow cut through my clinical exterior and touched a place of deep sadness in me that I still feel today.  On the one hand, I did feel powerful in that I knew I could alleviate her pain, I could connect her with a spiritual advisor, and I could help ease her transition from the kingdom of illness into the quiet peace of death.  But in some regards, I felt ultimately powerless.  A thief had entered my practice and robbed me of my confidence to assuage her fear and enormous sense of loss.

When I think about this woman’s kingdom of illness and her battle against cancer, the defeat she felt was obvious.  She cried out over and over again, “I don’t want to die, I’m not ready, I don’t want to die,” and I knew she felt she had lost the fight.  It was agonizing to be in the room with her and I had to resist my own urge to run.  As Sontag stated in her 1978 writing, Illness as Metaphor, “a large number of people with cancer find themselves being shunned.”  In that moment, I could understand why.  The rawness of watching someone face death hits so close to home, and unless one is accepting of the eventuality of their own mortality, the desire to flee can be great.

The fight is over
My most powerful moment came when Marda and her family ultimately decided the fight was over.  Marda shook visibly with a fear so strong it was contagious, but I knew I owed it to this woman to join her army and be a courageous presence.  She asked me what her death would be like and I promised her it would be peaceful.  She asked me if it would hurt and I promised her she would feel no pain.  I talked with the resident about the medications she would need, I arranged for a priest to perform last rites, and I ensured her family had the privacy and support needed to grieve together and say goodbye.  I started her on a gentle morphine infusion to reduce feelings of air hunger and provided medication to relieve her anxiety.  I comforted her with every interaction and communicated openly with her husband at the bedside.  My goal of care was to change the dynamic in that room from one of fear to one of acceptance and peace.  My power that day came from honoring the promises I made.

What this experience taught me
This experience showed me that my own fear of mortality should not hold me back from providing heartfelt, supportive care to patients in their times of need.  I learned that I have the inner strength to stay when I want to run. I learned how to maintain enough emotional distance to do my job while showing the compassion and courage needed by someone facing their ultimate fear.  I learned that taking care of people who know they are dying requires a special set of skills and that I often find it difficult to choose the right words when difficult questions are asked.  Most importantly, I learned that taking care of dying patients will never get easier, nor will I want it to.  The landscape, however, will become more familiar each time I visit the kingdom of the ill.

Sontag believed “illness is not a metaphor,” yet it is difficult for me to grasp the concept of illness without it.  How do we rally the energy needed to navigate disease without feeling we are heading into battle, and how do we graciously admit defeat when the fight is over?  These are questions I will continue to ask myself as I work with patients like Marda and develop the emotional competency to understand what these interactions mean to me as both a human being and a nurse.

How this experience changed my practice
This experience helped me address, to an extent, my own fear of caring for dying patients.  I have been able to be more direct with them about their experiences and anticipate their physical, social, and emotional needs well in advance.  I do find that each time I work with a patient at the end of life, I become more accepting of my own eventual demise. As such, I  have noticed the desire to flee becomes less as I gain experience and confidence that I will say and do the right thing.  As someone who works extensively with patients inhabiting the kingdom of the ill, I hope to understand its complex landscape and use this insight to help my patients view their inhabitance not as Sontag’s  lurid metaphor, but one in which they possess the power needed to live, and ultimately die, with grace.

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References
Sontag, S. (1978). Illness as metaphor. New York: Farrar, Straus and Giroux.
*Patient age, name, disease and other identifiers have been altered to protect patient privacy.