Advanced Dementia and Nursing Home Error

Our attorneys at Lebowitz and Mzhen, LLC, have recently read a study on nursing home residents with advanced dementia, published in the October 15, 2009, issue of The New England Journal of Medicine. According to the report, dementia is not just a disease of the mind, it is a physical illness as well—a leading cause of death in this country, and should be recognized as a terminal illness that requires high quality palliative care.

The report, led by Dr. Susan L. Mitchell from the Hebrew Senior Life Institute for Aging Research in Boston, studied 323 nursing home residents with advanced dementia and their families, in 22 different homes over a period of 18 months. The goal was to better understand the clinical complications of dementia and the families’ comprehension of the dementia prognosis, in order to make the right decisions in patient placement—reducing pain, suffering and nursing home injury and neglect in the final stages of life.

Patients with advanced dementia experience severe memory loss, have difficulty speaking, are restricted to the bed, and are totally dependent on others for care. The report argues that because dementia is consistently not recognized as a terminal illness, patients with advanced dementia are not being diagnosed as high risk for death, and are receiving poor palliative or nursing home care.

Mitchell argues that families need to clearly understand the prognosis of advanced dementia as a terminal illness, and the complications to expect, so patients can receive proper advanced care—like access to a high quality hospice, or improved skilled nursing home services. The goal, states the report, is to avoid patient suffering and pain, as well as nursing home negligence, due to lack of skilled nursing home services and supervision.

The data from the study showed that in the period of 18 months, over half of the residents (54.8%) died from:

• Pneumonia (41.1%)
• Eating problems (85.8%)

• Febrile episodes or fevers (52.6%)

During the last three months of life many of the residents had distressing symptoms like pain, dyspnea (difficulty breathing), and underwent burdensome interventions as they approached the end of life—40.7% of residents experienced hospitalization, tube feeding, intravenous therapy, or emergency room visits. Mitchell stated that many of these burdensome interventions could not have saved them, and ultimately caused more distress and pain to the patients than they would have experienced with high-quality palliative care. Around 40% of the residents had pain similar to that of an advanced cancer patient, as well as similar life expectancies.

When family members clearly understood the poor prognosis and complications that result in the final stages of advanced dementia, they were better able to make choices based on the goal to make the patients feel comfortable. In the final three months of the study, families that had a clear understanding of the terminal nature of the illness were less likely to put patients through the aggressive burdensome interventions than residents whose families did not have this understanding.

In another editorial, Greg A. Sachs, Indiana University School of Medicine’s Chief of General Internal Medicine and Geriatrics, pointed out that skilled hospice care placement reduces hospitalizations, nursing home error and burdensome interventions during final illnesses. Sachs stated that because dementia continues to go unrecognized as a terminal illness, patients with advanced dementia are referred to hospice care less than patients dying from cancer. Sachs hopes that these barriers will continue to be broken down with Mitchell’s study, and that with better understanding of advanced dementia, patients will be properly placed into skilled facilities that prevent nursing home injury and neglect, and promote quality care during the final stages of the illness.

If you a loved one in a Maryland nursing facility has experienced nursing home negligence or abuse, contact the attorneys at Lebowitz and Mzhen, LLC for a free consultation, so we can help you receive the personal injury compensation you are owed.

The Clinical Course of Advanced Dementia, New England Journal of Medicine, October 15, 2009
Dementia Patients Often Suffer in Final Days, CTV News, October 15, 2009
Dementia is a Terminal Illness, But Palliative Care Often Poor, Medscape Medical News, October 16, 2009
Outcomes Studied in Nursing Home Patients With Dementia, Health Day: Physician’s Briefing, October 14, 2009
Treating Dementia, but Overlooking Its Physical Toll, New York Times, October 19, 2009

Related Web Resources:

National Institute of Neurological Disorders and Stroke, (NINDS)

The National Hospice and Palliative Care Organization, (NHPCO)

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