PERCEPTIONS OF SUFFERING AT THE EOL
Even when EOL discussions are held with patients and families, for many patients the physical and psychological concerns can become overwhelming. My father clearly demonstrated with his “DO ANYTHING YOU CAN TO KEEP ME ALIVE” that being alive, regardless of his quality of life, was at that moment in time more important than dying. Opposite my father's decision to stay alive, there are patients who at some point on their dying journey not only no longer want curative treatments, but do not want to wait for death. They want control over their death. They want control over when they will die. I received recently an e-mail from one of my clients whom I first saw 21 months ago, shortly after her son's suicide. Then, only 3 months after her son's death her husband was diagnosed with cancer. I saw her as a client at least monthly over those 21 months. Her e-mail read, “My husband killed himself a few hours ago. He shot himself and I am mad at him, but neither I nor my daughter blame him due to all the suffering he has endured over his last eighteen months with cancer.”
Also, recently I received a phone call from an adult son who said, “my best friend and co-worker, my dad, shot himself due to his suffering.” When the son came in for counseling, he told me the father had left next to his body a piece of paper with a quote from palliative care physician and author Ira Byock's (2004) Four Things That Matter Most. He had marked a check mark next to each of the four statements: “I forgive you. I hope you forgive me. I love you. It's OK to die!” Both of these individuals who killed themselves had cancer.
Both of these individuals had family mobiles with various parts or family members who loved them, and both had health care directives. These individuals were not merely statistics, they were real persons with real lives, continuing an ongoing presence on their family mobiles.
As professionals we need to remind ourselves trying to help and support mobiles maintain perfect balance all the time will not happen. Life and its daily events create change. Thoughts and feelings create change. Cataclysmic events such as suicide cause massive change, but it is during the process of balancing that families ideally learn to adapt.
Whatever our professional involvement may be with families who are trying to cope with a life-threatening, chronic, or terminal illnesses, we need to see ourselves as a team of folks helping and supporting them, not as the Lone Ranger who can do it alone. No one on the interdisciplinary team is the right person, at the right time, for every patient. Each of us needs to remind ourselves in our professional roles that we are not on the patient's mobile, but we are, instead, looking at the patient and the family mobile from a clinical distance.
THE PROFESSIONALS' OWN STORIES
How do we as professionals individually cope with our own “stories,” our own family mobiles, and our own personal views of past shattered windows? Like the families with whom we work, we too need to see our lives as always evolving, as always changing. We need to be aware of our own fears and prejudices, our own conscious and unconscious thoughts, and our own attitudes and responses to the people with whom we work. We too, like the families we encourage to explore their “dark emotion,” need to look at our own fears and challenges on our life journey. We too at some point may be asked the same question as those arriving in emergency departments: “Do you have a health care directive?” What is good for those we work with is also very good for us. Planning far in advance and having conversations that matter are important for not only your patients and their families, but also for yourself.
Professional caregivers need to remember that each family mobile is made up of parts, yet not just any parts. These parts are not statistics, nor “the colon cancer in room 401,” “the TBI in Neuro,” or the “challenging family” in the waiting room. These parts, full of stories and lives lived, still have hopes and dreams. They are connected and interconnected to family members and friends, to their own life networks.
As we remind the families we work with that their mobile will never be exactly the same again due to the illnesses they are dealing with, we also need to remind them, and ourselves, it is through efforts to create change, take chances, and have the conversations that matter—conversations that move us forward, as individuals, and as families, toward deeper understanding of each other's values and beliefs—that we can help guide and better provide ACP and EOL care.
Byock, I. (2004). The four things that matter most: A book about living. New York, NY: Free Press.
Gillon, R. (1994). Principles of health care ethics. New York, NY: John Wiley & Sons.
Greenspan, M. (2003). Healing through the dark emotions: The wisdom of grief, fear, and despair. Boston, MA: Shambhala.