With aging there are many diseases that may impact quality of life and lead to eventual death. The end stages of Alzheimer’s disease, or other advanced illnesses can be challenging for patients and their families. At Hebrew SeniorLife we find that family members are looking to doctors and nurses to help their loved ones in what may be the end-stage of life. Palliative care, while similar to hospice, is offered to patients earlier in the disease process and provides specialized medical treatment to manage symptoms. Often times pneumonia, delirium and eating problems accompany the terminal disease, and palliative care can help cope with those complications and improve quality of life for patients.
One illness that has significant impact on older adults is dementia. Alzheimer’s disease is the most common cause of dementia. Researchers at Hebrew SeniorLife Institute for Aging Research (IFAR) have done, and continue to do, a tremendous amount of work in this area. For instance, the CASCADE study led by Susan L. Mitchell, M.D., M.P.H., Director of Palliative Care Research at Hebrew SeniorLife IFAR, and published in 2009 in the New England Journal of Medicine was the first to describe the clinical course of advanced dementia. The findings demonstrated that advanced dementia is a terminal illness, paving the way for older adults to receive more appropriate care in the end stages of this disease.
While family members may want extensive treatment for their loved one, aggressive treatment may not be the most suitable option for older adults. In fact, IFAR experts suggest the opposite—many of the interventions at the end of life may be a burden and not at all beneficial to the patient. IFAR research is the basis for educating dementia patients and their families about what to expect as the disease progresses. This understanding allows for more informed decision-making that is aligned with patient preferences for end-of-life care.
IFAR is a leader in geriatric research and novel interventions that promote high-quality care for older patients with advanced diseases are on the horizon. Currently, two large clinical trials are underway to evaluate whether short videos can help patients and families make better decisions about treatment choices, particularly near the end of life. Ultimately our research teams are looking to uncover new interventions that improve patient care for older adults and that do not needlessly extend life in ways that are counter to the wishes of the patient.
In palliative care, the goal is to ensure the physical comfort, emotional well-being, and quality of life for patients and their families. Aggressive treatment—even antibiotics in patients at an advanced disease stage—may be overwhelming for the patient. Sometimes less care is the best care for patients at the end of their life. And at IFAR we are committed to research that educates clinicians, informs patients and influences policy to improve palliative care for patients with advanced dementia and other life-ending illnesses.