News from the End of Life

Study: Caregivers suffer long-term effects of stress

Caregivers’ IL-6 levels were four times higher

A study of caregivers suggest that the effects of chronic stress resulting from caring for a dying family member may last for years. As part of a long-term study examining stress and health in older caregivers, scientists at The Ohio State University in Columbus followed 119 women and men who cared for spouses with dementia, along with a similar number of age-matched non-caregivers. The subjects gave regular blood samples and answered questions about stress, depression, and loneliness.

The findings, published in the July 2, 2003, Proceedings of the National Academy of Sciences Online, focus on interleukin-6 (IL-6), a compound that circulates in the blood and helps regulate the immune system. Excess IL-6 plays a role in muscle atrophy and several diseases of aging. It promotes the production of C-reactive protein (CRP), a risk factor for cardiovascular disease. Both IL-6 and CRP are implicated in type 2 diabetes, osteoporosis, and arthritis.

Stress has lasting impact on immune system

Scientists have begun to recognize some health risks associated with caregiving. Compared with non-caregivers, caregiving spouses have more depression, hypertension, infectious illness, and heart disease. They’re also at greater risk for early death. Researchers said they located an immune system pathway that links caregiver stress to serious health problems. This mechanism apparently remains active even years after the stress is gone. The findings contribute to scientific understanding of how stress can make people sick and why stress reduction may be a lifesaver.

On average, the caregivers in the study had four times as much IL-6 in their blood as the non-caregivers — an effect that continued for several years after the spouse had died. According to the researchers, this suggests that chronic stress may have a lasting impact on the immune system.

New neuropathic pain guidelines published

Guidelines recommend lidocaine patch

New pain management guidelines for treating patients with chronic neuropathic pain were published in the November issue of Archives of Neurology (2003; 60:1,524-1,534). The evidence-based guidelines are designed to help physicians better diagnose and manage patients suffering from chronic neuropathic pain. According to the report, these guidelines are significant because they review recent studies and provide physicians with recommendations on specific therapies as first-line treatment.

Therapies recommended as first-line agents for the treatment of neuropathic pain include lidocaine patch 5%, gabapentin, opioid analgesics, tramadol, and tricyclic antidepressants. Endo Pharmaceuticals’ Lidoderm (lidocaine patch 5%), a topical treatment that targets the site of the pain, rather than the entire body, was the first drug approved by the Food and Drug Administration (FDA) for post-therapeutic neuralgia and is the only topical treatment recommended as a first-line therapy in these guidelines.

The FDA-approved dosing for the Lidoderm patch is up to three patches applied for up to 12 hours within a 24-hour period. The patch has not been approved by the FDA for any indications other than for the relief of pain associated with postherpetic neuralgia, and its safety and efficacy in other indications have not been established.

Study shows caregivers overestimate pain

Caregivers need training in pain assessment

A study conducted by the College of Nursing at the University of South Florida in Tampa shows that caregivers often overestimate their sick family member’s pain.1 As health care increasingly moves out of hospitals, care of patients with cancer is more often provided in the community with the help of family caregivers. In many cases, nurses depend on family caregivers to provide assessment data about patients. This makes the accuracy and dependability of the data given by caregivers particularly important.

The study included 264 newly admitted adult patients with advanced cancer in hospice home care and their primary caregivers. Patients and caregivers completed questionnaires that included numeric rating scales for pain, dyspnea, and the Constipation Assessment Scale. All of these scales were designed to describe the patient’s symptom intensity. The results indicated that caregivers significantly overestimated symptom intensity for all three symptoms.

Results of the study indicate that hospice and home health nurses need to train caregivers in conducting systematic assessments of pain instead of assuming that they understand the patient’s symptoms. Until then, nurses need to be wary of relying upon family caregiver reports of pain.


1. McMillan SC, Moody LE. Hospice patient and caregiver congruence in reporting patients’ symptom intensity. Cancer Nurs 2003; 26:113-118. 

RWJF announces funding of leadership centers

Six institutions to provide palliative care training

The Center to Advance Palliative Care (CAPC), a national program of The Robert Wood Johnson Foundation (RWJF), has announced that RWJF is committing $4.5 million to increase the availability of palliative care in hospitals throughout the nation. The grants will fund six institutions with exemplary palliative care programs — Palliative Care Leadership Centers (PCLCs) — over a three-year period. Each will provide a site-visitor program for professionals from other health care institutions intending to start palliative care programs. PCLCs will offer hands-on intensive training focused on the financial and operational aspects of building a program.

"The PCLC initiative will help millions of patients and families who suffer from the pain and debilitating symptoms of serious, chronic illness. Palliative care is a rapidly growing trend, and over 800 hospitals now have palliative care programs. However, a disparity still exists between the number of U.S. hospitals (approximately 4,500) and the number hospitals with palliative care programs," says Diane E. Meier, director of the CAPC in New York City.

RWJF and CAPC solicited proposals from palliative care programs throughout the country. The Palliative Care Leadership Centers are:

  • Fairview Foundation (Fairview Health Services), Minneapolis;
  • Massey Cancer Center of Virginia Commonwealth University Health System, Richmond;
  • Medical College of Wisconsin, Milwaukee;
  • Mount Carmel Health System, Columbus, OH;
  • Palliative Care Center of the Bluegrass, Lexington, KY;
  • University of California, San Francisco.

CMS rolls out its quality initiative

Home Health Compare, the Centers for Medicare and Medicaid Services’ (CMS) national quality initiative for home health agencies became active, took effect in November. Home Health Compare’s pilot test began in May 2003, and includes outcomes data on items that include improvement in ambulation, improvement in bathing, acute-care hospitalization, and improvement in toileting. To see the advertisements that CMS is placing nationally, go to You also can choose the link to the Home Health Compare web site to see how consumers will view your agency’s scores as compared to local and national benchmarks.

FDA approves new Alzheimer’s drug

The Food and Drug Administration has approved memantine, a drug sold in Germany for many years, as the first treatment designed specifically for late stages of Alzheimer’s disease. U.S. marketer Forest Laboratories will sell memantine here under the brand name Namenda, for patients with moderate to severe Alzheimer’s symptoms. A Forest spokesperson says the drug should be available in January.

While some patients given memantine experience improvement in memory and thinking skills, the majority of Alzheimer’s patients will experience a slower pace of deterioration, letting patients maintain certain functions a little longer. For example, the drug helped some patients maintain the ability to go to the bathroom independently for six more months, according to studies, a benefit caregivers consider important.

Memantine is the first option for advanced stages of Alzheimer’s. The nation’s four other Alzheimer’s medications — Aricept, Exelon, Reminyl and Cognex — work in early stages of the disease. About 4 million Americans have Alzheimer’s, and a million of them are believed to suffer severe symptoms.