The John A. Hartford Foundation blog

Pain can ruin anyone’s quality of life.  More than 80 percent of older adults have chronic medical conditions that are typically associated with pain, such as arthritis. Do they have to live with pain?  Can it be better controlled?  All too often these questions aren’t asked by patients, families, or even by health care providers.  Some fear pain medication.  Some believe that pain should be tolerated.  Unfortunately, this is what happened to a member of my family.   Richard, my 66-year old cousin, was suffering from an array of chronic diseases.  He was unable to get up from his bed.  He loved to read, yet he could no longer sit up and hold a book.  He was isolated in his room.  But there is a silver lining to the story.  Richard received a life-changing consultation from a palliative care physician and her team.

Palliative care is not just about making people comfortable at the end of their lives.  The team also focuses on pain and symptom management for people, like Richard, coping with complex chronic disease.  I knew to reach out to a palliative care physician because the John A. Hartford Foundation is a proud funder of Diane Meier, who directs the Center to Advance Palliative Care.   Through Dr. Meier’s efforts and those of the team at Mount Sinai, a Web-based directory of palliative care providers by state and by hospital is available to the public.   I used this resource to find help for my cousin.

Palliative care is about helping people achieve their goals at the end of life. So why is palliative care such a sensitive topic?  During the heated debates on health care reform, some equated palliative care with “death panels.”  There is a large body of evidence that disagrees.  Just last week, Dr. Meier wrote on HealthAGEnda about a palliative care study recently published in the New England Journal of Medicine. The study found that patients with lung cancer who were randomly assigned to receive palliative care not only were more active and happier than those who did not receive palliative care in addition to standard therapy, but they also lived three months longer on average. Dr. Meier discusses the study in depth, and also calls for more research into palliative care for older adults.

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What do the following people have in common?

• MacArthur Foundation Fellow
• Governor Rendell-appointed chair of the Commonwealth of Pennsylvania’s Senior Care and Services Study Commission
• Executive Editor of the Journal of the American Geriatrics Society
• President-elect of the American Academy of Home Care Physicians
• Member of the Chicago Wellbeing Task Force and the Legislative Task Force
• Chair-Elect of the Aging and Public Health Section of the American Public Health Association

They are all Hartford grantees and represent six of the nine-person 2010-2011 cohort of the Health and Aging Policy Fellows program, funded by The Atlantic Philanthropies. Congratulations to each of them, listed (and pictured) in order of the accolade above:

• Mary E. Tinetti, MD
• Eileen M. Sullivan-Marx, PhD, CRNP, FAAN
• Joseph G. Ouslander, MD
• Bruce Leff, MD
• XinQi Dong, MD, MPH
• Lené Levy-Storms, PhD, MPH

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This week’s New England Journal of Medicine contains a fascinating randomized controlled clinical trial of best cancer care, with palliative care versus best cancer care alone, among patients newly diagnosed with stage 3 and 4 non-small-cell lung cancer. The quick version is that combined palliative and best cancer care led to significant improvements in quality of life, reduction in rates of depression, reduction in “aggressive” care in the last weeks of life, and a 2.7 month gain in life expectancy. Our editorial accompanying this study defined palliative care as follows:

Palliative care focuses on relieving suffering and achieving the best possible quality of life for patients and their family caregivers. It involves symptom assessment and treatment; support for decision making and assistance; matching treatments to informed patient and family goals; practical aid for patients and their family caregivers; mobilization of community resources to assure a secure and safe living environment; and collaborative and seamless models of care across a range of care settings (i.e., hospital, home, nursing homes, and hospice). Palliative care is provided both within the Medicare hospice benefit (hospice palliative care) and outside of it (non-hospice palliative care). Non-hospice palliative care is offered simultaneously with life prolonging and curative therapies for persons living with serious, complex, and life-threatening illness. Hospice palliative care becomes appropriate when curative treatments are no longer beneficial, when their burdens exceed their benefits, or when patients are entering the last weeks to months of life.

The palliative care intervention in this study was standardized and adherent to quality guidelines contained in the National Consensus Project for Quality Palliative Care. For those of us working in geriatric or palliative medicine, these results are not particularly surprising—plenty of other studies have demonstrated better quality and reduced health care utilization in association with palliative care services delivered in a range of models (hospice and non-hospice), settings (outpatient, nursing home, and hospital), and regions (rural and urban teaching and non-teaching hospitals, both in the U.S. and internationally). Nonetheless, the study has received enormous attention from the mainstream media as well as the blogosphere. Why? Because the palliative care intervention group lived nearly three months longer than the usual cancer care control group, despite receiving less aggressive care and less chemotherapy in their last weeks and months of life.

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One of the persistently nagging challenges of trying to improve health and health care for older Americans is the general public’s refusal to share our belief in this need.     

We’ve raised many of the issues in this blog:     

- Most people are happy with their health care providers and don’t appreciate the pervasive problems of quality and safety that exist for all patients, much less the specific failings of care for older adults.     

- People don’t want to be defined as “old,” so why would they want care from geriatric specialists?     

- Older people don’t understand how much better off they could be if they had access to care that was more specifically targeted to deal with the issues of older adults; better organized to provide care; coordinated over time and across settings; and more comprehensive, drawing on the full range of medical, social, and community resources available     

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A caricature of how philanthropy stimulated social change in “the good old days,” derisively called Philanthropy 1.0, describes the process this way: first, private funding helped successfully develop an innovation; the innovation then gained recognition; and finally the government rushed in to adopt it and take it to scale. (If you build a better mouse-trap, the world will beat a path to your door.) In the cynical modern perspective, this process of adoption, if it ever really happened, stopped with the Great Society programs of the Johnson administration.

Today, in the supposedly more complicated age of Philanthropy 2.0, program sustainability is thought to derive from complex business plans (e.g., combining government support with earned revenue and public fundraising) or from political advocacy processes, including stakeholder capacity development, lobbying, and ultimately, legislative action.

But the world is wide, and every once in a while, if you do build a better mousetrap, work hard to polish it, connect it to stakeholders, and remain patient—the world will come to your door. This week we are celebrating a new partnership with the National Institute on Aging, our third, to sustain the Jahnigen and the Williams career development awards, two programs pioneered by the Hartford Foundation over the last 10 years through a new R03 award mechanism entitled GEMSSTAR—Grants for Early Medical/Surgical Subspecialists’ Transition to Aging Research.

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In Part I of this post, I shared a little about the eighth annual Hartford Interdisciplinary Communications Conference, which brings together emerging academic experts in gerontological nursing, medicine, and social work to help improve their ability to communicate about their work.  After hearing “Gamblin’ Man” performed by David Honeyboy Edwards, a 94-year old blues legend at the conference, I reflected in the post that I saw gambling as a theme for the meeting.  

Participants Nancy Kelley-Gillespie and Fay Martin with facilitator John Beilenson

Gambling was not only a theme but also, coincidentally, the topic of two outstanding participants’ research. Fay Martin, DL, MSW, MSL, Hartford Geriatric Social Work Faculty Scholar  at Wayne State University School of Social Work in Detroit, MI, was researching the effect of problem gambling on older adults’ lives and health. “Casinos are the new senior centers,” she shared with me during a presentation of her research.  “This is a concern, because problem gambling is an invisible addiction that has the potential to put older adults at risk of not only mental, physical, and health issues, but also financial disaster.”  Dr. Martin attended the conference so she could learn to distill the main points of her research in order to get more attention on this “invisible” problem. 

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Photo courtesy of the Campaign for Better Care

On July 28, I attended a special forum, hosted by the Campaign for Better Care, called Building Better Care: Improving the System for Delivering Health Care to Older Adults and Their Families. It took place at the National Press Club, in Washington, DC, and was also accessible via Webcast. The forum offered an excellent lineup of speakers, including several from the Hartford family. In the keynote address, Senator Sheldon Whitehouse (RI) spoke eloquently and informatively about the new Patient Protection and Affordable Care Act and stressed the need to establish benchmarks for cost savings. 

Gail Sheehy, author of the new book Passages in Caregiving, spoke about her own caregiving experience and moderated a panel of caregivers and patients. Each person recalled how their opinions and abilities were ignored in their own treatment or a family member’s. Some of the horror stories they told, unfortunately, were not at all surprising to those of us who have worked in hospitals and nursing homes. 

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“I’m a gamblin’ man, I gamble everywhere I go.”
-Sung by David Honeyboy Edwards (pictured left) during a guest performance at the 2010 Hartford Interdisciplinary Scholars Communications Conference.

If I were a gambling man, I would readily place a bet on the future success of the junior faculty and fellows who attended this year’s Hartford Interdisciplinary Scholars Communications Conference.  I would wager they’ll soon not only be bold leaders in the field of aging-related research and education, but they will be the best spokespeople we have to convince the country about the importance of improving health care for older adults–whether that’s by speaking up for better geriatrics education in their academic institutions, testifying before Congress, or being interviewed by CNN’s Anderson Cooper.  (Just wait; I bet it happens!)

For the last eight years, the Interdisciplinary Scholars Communications Conference, expertly facilitated by Strategic Communications and Planning, has been equipping emerging academic experts in the field of aging with the communications skills needed to lead change and improve the health of our aging society.  A highlight of every year’s conference is a performance by older adults in the arts.  This year, it was Mr. Honeyboy Edwards. As he performed his classic blues song quoted above–a reward for a hard day’s work by participants (you can see him performing it for another audience below)–it made me think about the Hartford-funded junior faculty and fellows who had been selected to attend the conference and how, in many ways, each them was taking a gamble just by showing up.

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David Reuben, MD, a longtime Hartford grantee, is chief of Geriatrics at UCLA and directs the Hartford Center of Excellence in Geriatric Medicine there. In July, Dr. Reuben became the Chair of the American Board of Internal Medicine (ABIM). He spoke with Health AGEnda about recruiting geriatricians, teaching teamwork, new models of care, and his new play.

Health AGEnda (HA): Who needs to see a geriatrician?

The people who would likely benefit the most from it. If you are 75 years old and playing tennis and you have hypertension and diabetes, you may not need to see a geriatrician. But if you’re 88 years old and most of your time is spent in a wheelchair, the situation and the conversations about health are different.

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Photo by Annie Levy

What will it take to ensure that all physicians are competent to care for their large and growing numbers of older patients?

Despite being only 13 percent of the population, older adults (those over 65) are big users of health care. For example, they make up 35 percent of office visits to the average general internist, 50 percent of visits to cardiologists, and 55 percent of visits to ophthalmologists. Except for pediatricians, all physicians will encounter older adults in their practice. But medical training does not reflect these demographic and epidemiological realities; standards of medical education do not require geriatric clinical training experiences (clerkships) during medical school. Yet medical education continues to require all doctors in training to treat children and deliver babies, regardless of future specialty.

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