CAPC News Bites, October 2015

What you need to know this month:

How to Get What We Need at the End of Life

CAPC Director Diane E. Meier wrote at the Boston Globe about the importance of prioritizing and then enacting the wants and needs of seriously ill patients. She recalls a former patient, whom she calls Mrs. Stein, whose primary desire was to die at home in her own bed.

“A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them. In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn. This requires three key elements.”

Read the full article here.

How One Home Health Agency is Leading on Palliative Care

On October 1, CAPC announced the addition of new Palliative Care Leadership Centers (PCLC), focused on palliative care in the community. One of those new PCLCs, Presbyterian Healthcare Services (PHS), was featured in a profile at Home Health Care News on the role that home health agencies can play in providing quality palliative care to the seriously ill.

“Presbyterian Healthcare Services (PHS) was recently named one of the four new Palliative Care Leadership Centers (PCLC) by CAPC, a national, member-based organization that supports health care organizations to implement this type of care. PHS is a Southwest network of eight hospitals, over 100 clinics, medical groups, home health agency and a health plan.”

Click here to read the full article.

Palliative Care: Continued Progress but Gaps Remain

Diane E. Meier, MD, Director of CAPC and R. Sean Morrison, Director of the National Palliative Care Research Center, reflect at Health Affairs on the significant growth of palliative care and the work left to be done to ensure universal access.

“Given the evidence that palliative care improves value for the highest-risk highest-cost patients, efforts to improve and standardize access to it should be prioritized, the argue. Despite growth in the prevalence of hospital palliative care services over the last 20 years, it is important to note that the presence of a palliative care program in a hospital is not equivalent to actual receipt of palliative care by patients who can benefit.”

They also note that development, evaluation, and subsequent dissemination of new palliative care delivery models outside of hospitals and hospice programs need to be undertaken to ensure high value health care for the seriously ill.

Click here to read the full article.

Costs for Dementia Care Far Exceeding Other Diseases, Study Finds

Diane E. Meier, MD, Director of CAPC and Amy S Kelley, MD are featured in an important article in the New York Times detailing new research on the cost of dementia care/ Researchers studied three diseases — heart disease, cancer and dementia — to determine which involved the greatest health care costs in the last five years of life. The most expensive, by far, was dementia.

The study looked at patients on Medicare. The average total cost of care for a person with dementia over those five years was $287,038. For a patient who died of heart disease it was $175,136. For a cancer patient it was $173,383. Medicare paid almost the same amount for patients with each of those diseases — close to $100,000 — but dementia patients had many more expenses that were not covered.

On average, the out-of-pocket cost for a patient with dementia was $61,522 — more than 80 percent higher than the cost for someone with heart disease or cancer. The reason is that dementia patients need caregivers to watch them, help with basic activities like eating, dressing and bathing, and provide constant supervision to make sure they do not wander off or harm themselves. None of those costs were covered by Medicare.

To read the full article, including featured statements from Dr. Meier and Dr. Kelley, click here.

Why dementia takes a huge financial toll on families 

Caring for patients with dementia and Alzheimer’s disease is far more expensive – 57 percent more – than caring for those with illnesses like cancer or heart disease, according to a study from researchers at Mount Sinai. CAPC Director Diane E. Meier, MD sat down with William Brangham of PBS NewsHour to discuss these findings and the enormous toll that dementia can take on patients and families.

“Dementia is an extremely difficult and challenging, serious illness,” said Dr. Meier. “I think it is the hardest illness I have ever participated in caring for, worse for the patient and family than, for example, cancer or heart disease or many of the other dreaded illnesses, because what happens is the person’s mind begins to disappear while their body is still there.”

Watch the segment here.


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