It seems the more we know, the less we do.
Chronic pain sufferers already know that much needs to be done to address the issues of the 100 million plus Americans who have to endure their pain. For many, the quality of life is substandard.
Let’s add another chapter to the book—pain at the end of life.
A study funded by the National Institute of Nursing Research out this week reports that people experience pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010.
The observational study looked at over 7,200 patients who died who enrolled in the national Health and Retirement study, a survey of Americans over age of 50. After the loved one died, family members were asked questions about their loves ones’ end-of-life experience, including whether the person suffered pain, depression of periodic confusion.
Most physicians tend to under treat pain and other symptoms at the end of life because they don’t recognize them or are hesitant to candidly talk about the process of dying and the pain associated with it, said Dr. Tim Ihrig, a palliative care physician at UnityPoint Health in Fort Dodge, Iowa.
Should this be surprising?
For many public health policy experts, these finding are disappointing. In 1998, the Institute of Medicine released a report called: Approaching Death: Improving Care at the End of Life.
What should be done at the end of life? It argued for more candor and transparency.
- Determine diagnosis and prognosis and communicating these to patient and family.
- Establishing clinical and personal goals
- Matching physical, psychological, spiritual and practical care strategies to the patient’s values and circumstances.
The study was considered a breakthrough then. But the follow-up study out this week indicates that 15 years later, not much has changed–in fact things have become worse.
“A lot of practitioners aren’t honest. We fail to empower patients with the truth,” said Dr. Ihrig. “In that setting, it’s easier to continue to do procedures and diagnostics rather than having that conversation which is very honest and very difficult.”
The number the number of palliative care programs rose and hospice use doubled between 2000 and 2009.
“We’ve put a lot of work into this and it’s not yielding what we thought it should be yielding. So what do we do now?” asked Dr. Joanne Lynn, a study author who directs the Center for Elder Care and Advanced Illness at the Altarum Institute.
Like chronic pain itself (which needs a lot more research), pain at the end of life also is understudied.
The North American Journal of Medical Sciences said the following in 20111:
“The sequential use of analgesics drugs and opioids are considered effective and relatively inexpensive for relieving pain, but no well designed specific studies in the elderly patient are available. There are not specific recommendations about the long-term use of complementary and alternative therapies and although their effectiveness remains unproven they should not be discouraged. Palliative sedation may be a valid palliative care option to relieve suffering in the imminently dying patient.”
We haven’t learned much and don’t appear to want to.