New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.

Whitehouse Pushes for Medicare to Pay for Person-Centered Care

Published on July 11, 2016 in Pawtucket Times

At a June hearing of the U.S. Senate Special Committee on Aging, Senator Sheldon Whitehouse calls for improving care for over 90 million Americans with advanced illnesses like Alzheimer’s disease, cancer, and heart disease. On the day of this Aging panel hearing, the Rhode Island Senator unveiled his legislative proposal, “Removing Barriers to Person-Centered Care Act,” at this panel hearing that would promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

The hearing, titled “The Right Care at the Right Time: Ensuring Person-Centered Care for Individuals with Serious Illness,” explored ways to improve the quality and availability of care and examined care models that are helping people with serious illness and their families.

Having Important Life Conversations

The June 23 hearing pulled together witnesses who called for “about the need for families and health care providers to prioritize these important life conversations, so that individuals’ wishes are known and person-centered care is prioritized,” noted U.S. Senator Susan Collins, who chairs the Senate Special Committee on Aging. In her opening statement the Maine Senator called for federal policies to “support efforts to relieve suffering, respect personal choice, provide opportunities for people to find meaning and comfort during serious illness, and – most important – remain in control of their own care.”

Advance care planning conversations to a patients’ physical, emotional, social and spiritual well-being are important in the care of a patient, says Collins. However, studies reveal that less than one-third of physicians have reported that their practice or health care system has a formal program in place to assess patients’ goals or preferences, she notes.

Collins also shared a personal story of a close friend who benefited from the person-centered care she received while she was a patient at the Gosnell Memorial Hospice House in Scarborough, Maine. “Despite her serious illness, because of hospice care her days were filled with visits from friends and families and many joyful moments, and she was surrounded by her family when she died peacefully,” she said.

“I’ve heard from Rhode Islanders about how difficult it can be for patients battling serious, advanced illnesses to get the care and respect they want,” said Whitehouse.

Whitehouse noted that “We can do better by these patients. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support models of coordinated care that focuses on the full person. Payment systems should reward providers for honoring patients’ own preferences for their care.

As Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, “Being Mortal, mentioned in his testimony, “people with serious, potentially life-limiting illnesses face substantial and increasing suffering, particularly during the last year of life. Medical care today typically exacerbates this suffering, often without any benefit of lengthened life. We have an opportunity to change this.”

“The goal is not a good death. Instead, the goal is to have as good a life as possible all the way to the very end,” say Dr. Gawande.

In her testimony, Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, who is living with stage IV inflammatory breast cancer stand stressed the importance of palliative care, which is designed to improve the quality of life for patients with serious illness.

“Palliative care is the best friend of the seriously ill,” said Berman, “Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer.”

Finally, Dr. Kate Lally, Chief of palliative care for the Providence-based Care New England Health System, Medical Director of the Integra Accountable Care Organization, and Assistant Professor of Medicine at Alpert Medical School of Brown University, urged Congress to consider legislation that would improve the quality, not just the quantity, of life of the seriously ill. “I feel blessed to do this work, and to be able to reflect with my patients on the life they have lived, their joys and regrets,” she said. “I feel I am able to share some of the most sacred moments of their life, and be at their side as they consider what is most important to them in their limited time.”

“The healthcare system as a whole, as well as Medicare and Medicaid, need to face growing expectations about how people with serious or terminal illnesses are treated,” said AARP Rhode Island State Director Kathleen Connell. “We are investing in prevention and early treatment and getting better results. Ultimately, however, people will still face serious illness and palliative care. Person-centered care is the proper prescription, and we must strive to make sure that it’s available. We need to be vigilant when it comes to supporting a healthcare environment in which patients with serious illness feel they are well informed and can remain properly in control of their options. And while families still tend to avoid these discussions in advance, when the time is right proper guidance makes a world of difference.

“People form especially strong opinions about decisions made that may prolong their existence, but add little to the quality of lives and, in fact, can prolong suffering,” Connell added. “Conversations on this phase of life are critical and we applaud Senators Collins and Whitehouse for their contribution to this dialogue.”

Legislation to Support New Models of Coordinated Care

The thrust of Whitehouse’s legislative proposal is to promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

“Too many Rhode Island Medicare patients battling difficult illnesses are struggling to get the right care at the right time,” said Whitehouse. “We need to break down the barriers between patients and the care they need. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support new models of coordinated care that are focused on human beings and not some rule or regulation.”

Whitehouse’s legislation would establish a pilot program administered by the Centers for Medicare and Medicaid Services (CMS) made up of twenty “advanced care collaboratives” of affiliated health care providers and community-based social service organizations. Collaboratives would receive a planning grant to assess the needs of the population of patients it would serve; to purchase or upgrade health information technology to facilitate better coordination of care between providers; and to support education and training on documenting and communicating beneficiary treatment preferences and goals.

Once planning is complete, collaboratives would enter a three-year payment agreement with Medicare to provide coordinated, high-quality care for their target patient population. Under the terms of the pilot program, CMS would waive regulations to promote innovative care for patients with advanced illness.

Waivers would be granted to allow Medicare patients to receive hospice care and curative treatment at the same time. Currently CMS’s regulations force patients to choose one or the other for their terminal illness. Patients would be able to also receive Medicare coverage in a skilled nursing home without a consecutive three-day inpatient hospital stay. Under current Medicare rules, patients are often charged for skilled nursing care after they leave an inpatient hospital stay because they were hospitalized for observation rather than admitted to the hospital.

Whitehouse’s legislative proposal would also allow Medicare patients to receive home health services without the requirement that they be homebound. Under current rules, a patient’s condition must have progressed such that there “exists a normal inability to leave home,” denying these services to those who are seriously ill but still mobile. Finally, it would also allow nurse practitioners to sign home health and hospice care plans and certify patients for the hospice benefit. Right now, only doctors can do so, even though nurse practitioners are often the ones administering home health and hospice care. This forms another barrier for patients seeking these services, especially in underserved and rural areas.

According to Tom Koutsoumpas, Co-Chair of the Coalition to Transform Advanced Care’s (C-TAC) Board of Directors, Whitehouse’s legislative proposal is “a critical step forward to achieving high-quality, coordinated care for those with advanced illness. This legislation allows for important innovations in care delivery and removes obstacles to support patients throughout the care continuum.”

Candidates Mum on Social Security

Published in Pawtucket Times on February 8, 2016

Just a week before the New Hampshire primary, scheduled for Tuesday, February 9, AARP releases a new survey, of likely primary voters, that finds Social Security is “one issue that transcends the partisan divide and unites people of all ages.” Both surveyed Democrats and Republicans alike agreed that all presidential candidates should give details as to how they will strengthen or expand Social Security.

In recent presidential debates, moderators focus on the economy, abortion, gun control, immigration and defense, hardly touching on aging issues. The January 29 AARP survey found that voters want more specifics about Social Security. More than nine in 10 New Hampshire primary voters across party lines and age groups say it is important for presidential candidates to lay out their specific plans to make Social Security financially sound for future generations.

Presidential Candidates Dodging Social Security Issue

“New Hampshire primary voters are sending a clear message to the presidential candidates that having a plan to keep Social Security strong is a test of leadership,” said AARP New Hampshire State Director Todd Fahey. “Yet, some presidential candidates are dodging the issue. Our survey confirms New Hampshire primary voters agree if a candidate thinks they’re ready to be president, they should at least be able to tell voters where they stand on Social Security’s future.”

According to AARP, the recent survey of 1,004 likely New Hampshire primary voters, was conducted by telephone from January 12 through January 16, 2016. By design, half of the respondents consist of likely Democratic primary voters (501) and half consist of likely Republican primary voters (503).

The AARP survey is part of nonprofit’s 2016 presidential election issue campaign, “Take A Stand.” In November, the nonprofit launched its its 2016 election accountability campaign initiative which demands on behalf of America’s voters that presidential candidates detail their specific positions on making Social Security financially sound.
The survey findings indicate that nine in 10 New Hampshire primary voters (93 percent Democrat and 92 percent Republican) across party lines and age groups say its important for presidential candidates to lay out a detailed plan to make Social Security financially sound for future generations. Regardless of age, nearly half or more of likely primary voters in each party think this is “very important.”

Also, more than three in four New Hampshire primary voters, across party lines and across age groups, agree that having a plan for Social Security is a basic threshold for presidential leadership. This includes 89 percent of likely Democratic primary voters and 80 percent of likely Republican primary voters.

Moreover, nearly nine in ten or more voters across both parties and age groups believe it is important that the next president and congress take action to make Social Security financially sound. This includes 96 percent of Democratic primary voters as well as 92 percent of Republican primary voters.

“If our leaders don’t act, future generations could see their Social Security benefits cut by 25 percent. That’s a $4,000 to $10,000 per year benefit cut! This survey confirms how critical it is for the next president to have a plan to update Social Security and a commitment to act on that plan,” said Fahey.

On the question of which presidential candidate they expect to vote for on February 9, the AARP survey found that among likely Republican primary voters, Donald Trump is the leading choice for president (preferred by 32 percent) with Marco Rubio preferred by 14 percent and John Kasich preferred by 13 percent However, more than one in four (26 percent) are less certain who will get their vote.

Among likely Democratic primary voters, Bernie Sanders is the leading choice for president (preferred by 59 percent), with Hillary Clinton coming in second (preferred by 33 percent. But one in five (21 percent are less certain who will get their vote.

“AARP said early on in the election cycle that Social Security is too critical a matter – and one affecting far too many people – to allow it to be skimmed over, breezed by, or paid only lip service,” said AARP Rhode Island State Director Kathleen Connell. “The presidential candidates need to take a stand on how they would update Social Security to keep it financially strong and adequate for future generations,” she says.

“Unfortunately, Social Security does not seem to be top-of-mind for candidates nor a discussion that finds its way into the debates,” says Connell, observing that some candidates, including some frontrunners, remain silent on the Social Security issue.
(You can get the very latest news and read what candidates with plans did say at http://www.2016takeastand.org.)

Connell says, “The challenge itself – keeping Social Security strong for the future – gets talked about a lot. You can be sure that when a candidate or elected federal official visits a senior center there will be a pledge (one I happen to believe has been sincere in Rhode Island) to protect Social Security.”

“You don’t hear so much about how. The devil is in the details. And, as the saying goes, ‘It’s complicated,’” adds Connell.

Older Voters Have Political Clout

From inside the Beltway, Darrell M. West, Ph.D., Vice President and Director of Governance Studies at the Brookings Institution, considers voters age 50 and over are one of the most important voting blocs in the nation. “It is a numerous group and these people vote in higher percentages than those who are younger. They often are decisive in elections and candidates have to take their views seriously,” says West.

Connell agrees about the clout of older voters. “The average age for a Rhode Island voter in the 2012 presidential election was 48.6, and that was up from 48.5 in 2010. We know that older Rhode Islanders vote in high percentages and we know that the 50+ population is grown as people live longer. But I have to say that when it comes to Social Security, voters 50 and older are united on the issue; they expect some form of accountability from the candidates on how they would lead on this issue, she says.

Anyone who thinks they’re ready to be President of the United States should be able to tell voters how they’ll keep Social Security strong,” adds Connell. “If our leaders don’t act, future retirees could lose up to $10,000 a year. Every year our leaders wait and do nothing, finding a solution grows more difficult,” she says.

Aging issues impact everyone, says Connell. “When I am asked about ‘aging issues it seems to me to indicate how people often default to a narrow view of ageing. Access to and the cost of healthcare is an issue for all ages. Taxation is an issue for all ages. Affordable housing is an issue for all ages. Protecting pensions is an issue for all ages, even for voters working in their 30s or 40s – as is the issue of Social Security. Our aging population presents a challenge to all Americans and I think you will see 50+ voters becoming increasingly liked-minded making more and more of an effort to be heard.”