What is Total Pain?
PAIN is the #1 fear expressed by people facing a serious, life-threatening, or terminal illness as revealed in a survey our company conducted in 2014 with over 400 participants.
I’m sure those responding to, “What is your greatest fear?” were thinking of their physical pain when answering this question. Pain, however, encompasses much more than the physical realm.
Dame Cicely Saunders was a nurse, social worker, and physician who’s considered the founder of the modern hospice movement. In a landmark publication appearing in 1964, she defined the concept of total pain as “…the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles.”*
Adequately treating the complexity of total pain is beyond the scope and skills of any single healthcare professional. Understanding this led to the development of a holistic interdisciplinary team approach to hospice and palliative care.
On this team, doctors and nurses focus on treating the physical suffering caused by illness and disease. They work collaboratively with social workers who address the psychosocial, emotional, and economic pain facing those with serious medical conditions. Spiritual care counselors on the team address the spiritual and existential pain and suffering of those ailing. Grief counselors’ role on the team involves assessing and addressing the emotional pain of losing a loved one during and after the end-of-life journey.
Thirty years into my nursing career, I knew virtually nothing about hospice or palliative care until my father was diagnosed with terminal cancer. He moved into my home and became my first hospice patient. I cared for him during the last three months of his life.
Like most people, he feared suffering from physical pain. On several occasions, he expressed surprise that his terminal condition wasn’t more painful. However, one morning during the last week of his life, I observed him grimacing as he moved in bed. I let him know I was going to start giving him morphine to manage the obvious physical pain he was experiencing.
He barked at me, “I don’t want to take that stuff and become a junkie!” Knowing my dad to be a tough, independent Yankee with thick skin, I told him straight up, “Dad, you’re dying of cancer, you don’t have to suffer physical pain, and this won’t make you into a junkie. You need this.” After a moment of contemplation he responded, “Oh well, what the hell, let’s go for it.” Thirty minutes later, laying contently comfortable in bed reading a book, he glanced up at me and said, “You’re right. This is good stuff.” With my consistent and appropriate administration of his pain medicine that was ordered by the hospice doctor, he was comfortable, cognizant, and coherently communicating right up until the last day of his life. He didn’t physically suffer unnecessarily.
The pain he experienced and eventually expressed was mental and emotional. I found him thumping his forehead with his fist in a fit of frustration. “Think James Think!” he repeated to himself, letting me know his once razor-sharp mind and concentration was slipping away from him. He feared loss of his mental acuity. I administered medicine to calm his anxiety and his focus was restored. Beyond the medicine, I also gave him his favorite epoch movies to watch and audiobooks to listen to which calmed his spirit.
Emotional pain surfaced again in the last days of his life as he shared details of his WWII Navy experience for the first time. Haunting and gruesome memories of landing Marines on Iwo Jima were recalled in vivid detail. Sights, sounds, and smells of war were displayed in his eyes and expressions in ways I had never seen before. Regrets were shared. These aren’t the kind alleviated by shots or pills.
Thankfully, by addressing his total pain, my dad died peacefully December 11, 2004 pain-free surrounded by his sons and grandchildren.
Pain comes to all of us in various ways, shapes, and intensities. Fortunately, with assistance from a competent, compassionate, and professional hospice and palliative care team we don’t have to face it alone.
by Mark Philbrick, BSN, RN