Some 35 years ago, my grandfather died a painful death as prostate cancer ravaged his body. His passing did not have to be so excruciating, given that hospital staff could have eased his suffering with pain medication.
When my mother asked about the possibility of giving her dying father more pain relievers, the nurse told her, “We’re afraid if we give him any more medication he could become addicted.”
The saddest part about that story is that nearly 40 years later, the same misplaced fears exist. While prescription drug abuse is a serious concern in the U.S., opioids can be used to manage pain safely and effectively. Properly managed, short-term medical use of opioid analgesics rarely causes addiction, according to the National Institute on Drug Abuse.
Today too many patients and their caregivers continue to hold onto erroneous beliefs about pain relief in the final stages of life. A study published in the January issue of the Journal of Pain and Symptom Management finds that a number of barriers impede effective pain management. The study focuses on hospice care and reports that concerns about addiction and drug tolerance, and poor communication between patients, caregivers and hospice providers, contribute to people experiencing substantial pain and distress at the end of their days.
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The researchers report that patients themselves often downplay their pain so they will not be viewed as psychologically and physically weak.
Even while hospice and other palliative care programs have grown significantly in the last 20 years, more people than ever are suffering from pain in their final months of life. An Institute of Medicine report published this month finds a nearly 12 percent increase between 1998 and 2010 in the number of people experiencing pain in the last year of life.
Education is the antidote for this growing epidemic. Physicians, nurses and family caregivers need to understand that managing pain is an essential part of quality care. And while the medical community has made impressive strides in asking patients about the intensity of their pain, the same is not always true for patients close to death. All patients should have the right to have their reports of pain accepted and their pain controlled.
Evidence suggests the vast majority of pain can be treated using medicines and supporting therapies.
Using more aggressive medical treatments for dying patients may keep them alive longer, but it may also prolong their suffering. Sometimes the best course of treatment is caring, which includes pain management, not curing. Medical practitioners need to have honest conversations with patients and their families about providing treatments at the end of life that have little or no benefit. Providers sometimes find it easier to continue to do procedures and diagnostics rather than having difficult conversations with family members.
When those end-of-life conversations do happen, they’re often held too late, when the patient is in the last days or hours of life. About half of all patients in hospice, designed specifically to assist patients facing terminal illnesses and their families, receive that care for less than 30 days, though it’s available to them for six months or more. That telling statistic suggests that people wait too long before starting hospice care, considered to be the model for quality, compassionate care.
It’s time to dispel the myths about pain management. At the same time, medical personnel need to learn when to stop aggressive treatment and start end-of-life care. Every patient, regardless of age or infirmity, deserves to live their final days in peace, dignity and pain-free comfort.
Tucci is president and CEO of the Hospice Foundation of America.