Get Out While We Can: Aid in Dying and Diane Rehm

Janice Lynch Schuster

In 1994, my family promised my grandmother, just diagnosed with metastatic cancer, that we would help her—and prevent her suffering—till the end. We promised she would die at home, and that she would not be in pain. But, like popular NPR host Diane Rehm discovered as she cared for her dying husband, we soon discovered how hard it is to deliver on such promises, especially in a time and place where aid-in-dying was and is illegal.

When she became ill, the entire family rallied to care for my grandmother, our matriarch. Eventually, her pain, which had spread to her bones, became impossible to manage. She had was a stoic woman, and admitting to pain indicated how unbearable it had become.

Doctors call this intractable pain: Experiencing or witnessing it is seeing. Despite being enrolled in hospice, with its promises of dignity and relief, issues around opioids prevented adequate pain management. Hospice nurses were not there to hasten her death, they said, or cause addiction. In the case of someone already near death, why does it matter?

On one of her last nights alive, we spent terrified hours trying to get someone from hospice to her home. By phone, we begged her nurses to help us. One suggested that such suffering reflected God’s will. (Not our God, I said.) While we stood helpless and distraught around my grandmother’s bed, a nurse called adult protective services. (more…)

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Congress Passes ABLE Act: Major Victory for Persons with Disabilities and Their Families

Congratulations to one of our 2015 Disruptive Women to Watch Madeleine Will for all her work on this legislation and on behalf of persons with disabilities. 

(Washington, D.C. – Dec. 17, 2014) – Last night, the U.S. Senate overwhelmingly passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16. First introduced in 2006, and subsequent sessions of Congress, the ABLE Act will allow people with disabilities (with an age of onset up to 26 years old) and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life.

“Today marks a new day in our country’s understanding and support of people with disabilities and their families,” Michael Morris, National Disability Institute (NDI) Executive Director, said. “A major victory for the disability community, ABLE, for the very first time in our country’s policy on disability, recognizes that there are added costs to living with a disability.” He continued. “For far too long, federally imposed asset limits to remain eligible for critical public benefits have served as a roadblock toward greater financial independence for the millions of individuals living with a disability.”  (more…)

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A Week of Music and Health Quality

Cyndy Nayer

Highlights from Stevie Wonder and the meetings of Boston and DC.

albumsIt was a week of meetings, concert, new ideas, gorgeous weather, and finding new friends–a week of quality, indeed.  Here are some findings, some musings, and some encouragement to all who are seeking to build quality and safety into health outcomes.

Boston:  No surprise that this beautiful city is accelerating some of the changes we want to see in health care and health outcomes. Meetings with new folks have fueled my energy in advancing the agenda in the all-important Rx development and access.  What’s missing is the value of new and developing treatments in improving the total value proposition:  what’s the worth in a family (quality of life during treatment), a worksite (lower absenteeism and lowering income loss), and to a person (less side effects, easier adherence, getting to cure [where possible]).  Of course I’ve written about this before (Framework for Outcomes-Based ContractingSovaldi Value of a CureSovaldi OBC Contract–Kiss is Still a Kiss), providing the business and outcomes models for using a high-cost drug that gets the person to goal. (more…)

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In Observance of Jessie Gruman

jessie-gruman picOn July 14th, 2014 we lost a truly outstanding woman to her battle with a long time illness. Jessie Gruman was the president and founder of the Center for Advancing Health. A true patient advocate, she promoted not only patient engagement but the use of evidence-based medicine to support the adoption of healthy behavior.  In addition to her professional career, Gruman defined herself as a musician, avid reader of poetry and interested in foreign policy, the media and global health. She was a true disruptive (more…)

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Who Will Take Care of You at Home if You’re Seriously Ill?

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be truer than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill. (more…)

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Working on a Dream: Reflections on The White House Summit on Working Families

Janice Lynch Schuster

In the late 1940s, my grandmother found herself a single mother of three, living far from family in Washington, DC, where she had moved to be a Government Girl during the war. A graduate of Smith College, and the child of Irish immigrants, she worked as many jobs as she could, and I often heard stories about her nights spent cleaning spittoons in dentists’ offices, or making dollhouse furniture on a lathe. At some point, unable to manage so much on so little, she sent her children to boarding schools run by the Catholic Church. My mother was five; the only story she shares about those years is about her joy when she was finally old enough to go home again, and to let herself in to the apartment after school. Eventually, my grandmother completed a master’s degree in science, and worked as a researcher for the U.S. Department of Agriculture. She was always my hero. (more…)

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Life and Death in Assisted Living: A FrontLine Special

MedicareAmerica is aging and it is aging quickly.

Currently, about 1 in 8 Americans are 65 years of age or older. It is estimated that this number will balloon to  72.1 million persons over the age of 65, or 19% of the population, by 2030.

As we explored in our eBook, the Different Faces of Caregiving, securing proper support for members of the aging population is a very difficult task.  And more often than not, families face significant financial difficulty in securing proper housing and care for their loved ones when they are no longer able to care for themselves. (more…)

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Why Low-Income Seniors Fail to Get Help Paying for Health Care

Trudy-Lieberman -- biggerA couple weeks ago, the Medicare Rights Center, a well-known New York-based advocacy group, released a report card showing how well seniors are faring with Medicare. The report is a good barometer of the troubles beneficiaries face when navigating Medicare’s very complicated system for getting health care.

One particularly compelling finding popped out: 21 percent of the 14,000 callers to the Center’s national help line in 2012 had trouble covering the cost sharing that Medicare requires. This means that almost a fourth of seniors struggle with paying the deductibles for Part B – doctor and outpatient services – and for Part D, the drug benefit. They struggle to pay the coinsurance and co-pays as well, some required by Medicare and some increasingly required by Medicare Advantage plans. That’s an amazing statistic for a social insurance program that started out covering nearly all of a senior’s medical expenses. (more…)

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A Tragedy of Civic Commons: The TimeBanking Approach to Caregiving

October’s Man of the Month is  Dr. Edgar S. Cahn. A disruptor in his own right, Dr. Cahn co-founded with his late wife Jean Camper Cahn, Antioch School of Law; the first law school in the United States to educate students through clinical training in legal services to the impoverished. In an effort to involve communities in promoting systems of self-help, Dr.Cahn began the Time Dollars project, a service credit program that operates in over 70 communities in the United States, Great Britain and Japan. Today, he shares with us the importance of Timebanking and how it can be applied to the field of caregiving. (more…)

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The Good and Bad Of Healthcare For Special Needs Children

healthspecialchilder1Many doctors are amazing at what they do and their expertise is essential in taking care of a child with special needs. However, as a mother, I have an amazing gift too – the gift of knowing and understanding my child better than any doctor ever will, no matter how skilled or brilliant. (more…)

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Elder Care & Elder Rage: Know the Warning Signs of Alzheimer’s

Jacqueline Marcell 1.20MB 1920x2560 - CopyFor eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I went ahead and hired soon sighed in exasperation, ‘Jacqueline, I just can’t work with your father. His temper is impossible to handle and I don’t think he’ll accept help until he’s on his knees himself.’ (more…)

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When Dealing with Alzheimer’s, Remember the Caregivers

Jodi at Alz Association lunchIt can be fascinating, inspirational, even intoxicating to attend a medical conference. The recent Alzheimer’s Association International Conference (AAIC) in Boston was all that and more.

With almost 5,000 scientists, physicians and others seeking a treatment or cure for Alzheimer’s, it was easy to leave the conference on a high. There is tremendous hope for the future owing to the many smart people who are working to beat this disease. Heading home I thought about the many developments that I was excited to share with my colleagues. (more…)

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Care Coordination, the Family Caregiver, and our Broken Safety Net System

MaryAnne_Sterling_PictureMy husband and I looked at each other a few months ago and made the heart-wrenching decision that we could no longer afford to pay for my mother to reside in an independent living community (in addition to our own financial responsibilities). Besides, she was at the point where she needed assistance with some of her daily living activities, a service not provided in “independent” living. Next stop: assisted living. We knew, due to mom’s lack of resources, this would have to be accomplished under Virginia’s Auxiliary Grant Program, which falls under Medicaid. We also knew that she would be out of resources by the end of August.

What we didn’t know was how quickly this process would bring us to our knees.


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An Interview with Jessie Gruman: A patient, health care reformer, and the recipient of caregiving

Jessie GrumanJessie Gruman is president and founder of the Center for Advancing Health (CFAH), a nonprofit, Washington-based policy organization which, since 1992, has been supported by foundations and individuals. CFAH works to support people’s engagement in their health and health care. Prior to founding CFAH, Gruman worked on these concerns in the private sector (AT&T), the public sector (National Cancer Institute) and the voluntary health sector (the national office of the American Cancer Society). DW talked with Gruman recently about her work and her perspectives on her role as a patient, health care reformer, and the recipient of caregiving. (more…)

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Lean Into the Sorrow

Regina Holliday

Last fall I was reading Sheryl Sandberg’s book “Lean In” on a plane.  I looked around my aisle at seats filled with business travelers and the majority of them were men.  As I read Sheryl’s thoughts on the fields dominated by men in positions of authority, I knew there was a field dominated by women: care giving. (more…)

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