The two greatest aversions of the human race are pain and death. During my medical career, I have witnessed countless numbers of people face both terrors. I have learned during the process of treating many patients for pain in the last days of their lives. My premise is that there are emotions, beliefs, attitudes, and values that greatly affect how our patients perceive and, therefore, handle their pain.
Ironically, the brain, the organ the body trusts to interpret pain, lives in a state of solitary confinement, shut off from the world as it sits encased in thick opaque bone. Pain fiber impulses are the way the body informs the brain about bad things that are happening in other parts of the body and in the environment. If we stub our toe, the pain fibers in our toe travel directly to the brain via the spinal cord and inform the brain of the new circumstance and we perceive pain. These electrical impulses inform us of the new problem (the pain), give an estimate of the severity, and give guidance in protecting the toe until it heals. Recent research has shown that most of the increase in electrical brain activity that occurs after a painful event does not come from the pain fibers in the toe informing the brain, but rather from an increase in brain activity within itself – that is, the brain talking to itself. In other words, the brain spends more energy appraising and reappraising the pain than it does in simply getting the pain message.
This internal appraisal system has to do with factors that modify pain, which I will call “regulators.” These regulators “up-regulate” or “down-regulate” pain within the conscious mind. In other words, emotions, beliefs, attitudes, and values can cause pain to be perceived as less or worse. In Table I, we see a list of some of these regulators.
I have had eleven kidney stones in the last thirty years. So even though the pain is rather intense, I have learned to bear with it because, I tell myself, “it’s only a kidney stone and it will eventually pass.” However, on one occasion, a kidney stone attack happened while my family was gone for the day. I found the pain from that stone to be practically unbearable. Tolstoy hints at why this particular stone was so intolerable in his masterpiece novella, The Death of Ivan Illych, when he says, “What tormented Ivan Illych most was that no one pitied him as he wished to be pitied.” I can hardly imagine facing severe pain without at least one friend or family member within reach, yet that is the precise situation of many of our patients.
Hospices work hard to combat loneliness by scheduling frequent visits from nurses, social workers, chaplains, and volunteers to patient’s homes. Ministering to the loneliness of a suffering patient requires no special expertise — simply a caring presence. Often, during my visits to patient’s homes, I find that I have little to offer medically. But even in that situation there is hope; simply being present, demonstrating compassion, and alleviating loneliness can have an incredibly positive and calming effect on a suffering person.
My Experience in Taiwan
Many years ago, I spent a few months volunteering at a small hospital in a very rural area of Taiwan. What I witnessed was that an ill person in that country rarely faces suffering alone. Family members were expected to move right into the multiple-patient hospital rooms. There was no hospital food service as family members supplied meals every day. Patient’s spouses or children usually slept near the bed on a mat and stayed close to serve the patient or assist them to the bathroom. Nearby always, patients in great pain had a family member to hold a hand, moisten a dry lip, speak a gentle word into an ear, or simply say a prayer. Sometimes when I visit my patients in our grand hospitals, I wonder if modern medicine has forgotten one of the original mottos of Hippocrates: Good medicine treats an individual, not merely a disease.
AseraCare Hospice staff work hard to down-regulate pain. We attempt to do this by keeping people in their homes thereby avoiding futile, lonely, and often frightening visits to emergency rooms and hospitals. We attempt to down-regulate pain by allowing patients to express their fears and pains and worries in a safe and affirming environment. We try to foster an atmosphere where faith can grow and crystallize so patients and families can experience an increased sense of hope, which down-regulates pain. We promote life review and other techniques to help patients and families find meaning and purpose in their journey.
We actively encourage diversion and distraction by bringing in volunteers and giving patients end-of-life tasks. By helping patients and families produce emotions like love and joy, by fostering attitudes of creativity and hope, by helping to create a caring community, we find that our patients often need less pain medication than they were requiring in the hospital. We work hard to make the patient feel like a partner, not a victim; one who retains control over his or her own body.
In my view, the greatest success of hospice is that it has demonstrated to the world that it is possible with community, medicine, faith, and some changes in our beliefs, attitudes, and values to down-regulate and disarm the last two great aversions that most of us will face – pain and death.