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Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. The caregiver crisis has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the caregiver crisis, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.

At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of the caregiver crisis. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Robbie Short, depicting some of the challenges offered by program participants in coming to grips with the caregiver crisis.

"Discovery Doodle"
“Discovery Doodle”

An estimated 44 million people provide care for the elderly, disabled, sick and injured. Caregivers have few tools and few support systems as they carry out their tasks, and they receive minimal, if any, training for these responsibilities.

Here are some of the contributing factors that make the caregiver crisis such a pervasive health and social problem, as offered by “Great Challenges” team members:

-Lack of recognition by payers, providers, employers and regulatory agencies on the value and financial impact family caregivers bring the health care system. (Cheri Lattimer, Consulting Management Innovators)

-Emotional isolation and lack of support (paid and unpaid) to help a family caregiver balance his or her life. (Suzanne Geffen Mintz, National Family Caregivers Association)

-The graying of the U.S. – 10,000 Americans turn 65 every day (Alan Blaustein, CarePlanners)

-Randi Belisomo

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Death over dinner? There’s an appetite for it

The future of caregiving could be a talking dog

Pet avatars offered as a solution to caregiver crisis at TEDMED 

The thought of virtual pets evoke 1990s toy memories for millennials, but a new incarnation of such may help stave off dementia in their grandparents- and provide them  enriching social connections.

GeriJoy companions, virtual “talking dogs,” are now providing pet therapy, personal companionship and computer services to the elderly, and peace of mind to their long-distance loved ones.

“We’ve transformed what it is like to be a caregiver,” said GeriJoy CEO Victor Wang, as he presented his tablet-based software at the TEDMED 2013 conference in Washington, D.C.

Wang says he was inspired to create the real-time avatars as a result of his family’s experience emigrating from Taiwan- and his grandmother’s subsequent deep depression as she remained behind, alone in their home country. His parents could not afford to employ the services of a caregiver, so they lived in fear that his grandmother would harm herself, while they were rendered helpless.

“We can help increase seniors’ self-worth and improve their mental health,” Wang says, noting that more than 800,000 Americans suffering from Alzheimer’s disease live alone, and that more than half of those lack a caregiver. These numbers are expected to exponentially increase in the next two decades, and the current four-to-one ratio of able-bodied caregivers per senior is expected to drop to one-to-one.

“There are not enough real people in the U.S.,” says Wang, and he sees his GeriJoy companions as a solution to not only providing seniors with emotional interaction, but capable of updating scattered family members with the condition and overall well-being of their loved one.

Each avatar is monitored 24 hours a day by GeriJoy staff who are available to engage each virtual pet in dialogue with its senior. Relatives can use the company’s website to upload photos and updates for seniors to view and talk about with their companion. GeriJoy staff log the content of each interaction online, so that family can see how their loved one is faring.

Wang predicts that his software will soon be helpful in detecting senior abuse and accidents, as well as have the capacity to provide daily medication and activity reminders.

Wang says GeriJoy is changing the traditional definition of caregiver. “It’s about the joy, conversations, friendships and health that comes from all of this and the relationships that we build.”

To learn more: www.gerijoy.com

-Randi Belisomo

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Death over dinner? There’s an appetite for it

Preparing for the dementia tsunami, a TEDMED discussion

POLST Illinois moves forward

Community cancer clinics turning thousands of patients away

Image: Flickr, TipsTimes via Creative Commons,
Image: Flickr, TipsTimes via Creative Commons,

Many U.S. cancer clinics have started to turn away thousands of patients due to the sequester’s cuts to Medicare.

As The Washington Post’s Sarah Kliff reports, some oncologists say the reduced federal funding makes it impossible for community clinics to administer expensive chemotherapy to seniors and remain financially stable. These patients must now seek treatment elsewhere, even as hospitals accepting Medicare beneficiaries grow more overcrowded.

Jeff Vacirca, chief executive of North Shore Hematology Oncology Associates in New York, told Kliff, “If we treated the patients receiving the most expensive drugs, we’d be out of business in six months to a year.” Vacirca said his clinics have stopped administering drugs on which they lose money. His clinics have also ceased to treat one-third of their 16,000 Medicare patients.

Pancreatic cancer patient Harold Rosen, 81, has been receiving chemotherapy at one of Vacirca’s cancer centers, but sequester cuts will soon change that.

“When I first came here, I was afraid to come because everyone’s dying. But everyone here is so pleasant. They smile, they laugh, they care about you. You would never know it’s a place of cancer,” Rosen said to NBC News. Rosen’s physician told him he must start receiving treatment in a hospital.

Vacirca said he is sad to turn away patients like Rosen, but he insists he must.”I have to be financially responsible to be here,” he said. “I owe it to my patients to not go out of business.”

Although Medicare is only facing a 2 percent reduction in funding- much less than other federal programs- oncologists say cancer patients are losing the most.

Seniors’ medications are mostly covered under the optional Medicare Part D. However, cancer drugs must be administered by physicians, and they are paid for by Medicare Part B. Part B covers doctor visits and is facing the sequester’s cuts.

According to Kliff, “The federal government typically pays community oncologists for the average sales price of a chemotherapy drug, plus 6 percent to cover the cost of storing and administering the medication.” But physicians cannot change drug prices, so the 2 percent cut will have to come out of the 6 percent cover charge- “akin to a double-digit pay cut” for clinics.

A recent survey of more than 300 oncology practices by the Community Oncology Alliance determined that 72 percent of them will change how they treat Medicare patients if the cuts continue.

The Alliance has pledged to “fight this unjust and devastating cut to cancer care” with an online petition.

A Milliman report shows that half of all U.S. cancer spending is associated with Medicare beneficiaries. Chemotherapy in hospital settings costs the federal government about $6,500 more than treatment in community clinics does. Some of those costs are then handed to patients, who pay another $650.

Will hospitals be able to absorb these patients? The same study shows almost 70 percent of Medicare patients receiving chemotherapy are treated in community clinics. Clinics in Connecticut, New York and South Carolina have already stopped treating patients.

What is the sequester?

In 2011, Congress passed a law stating that if no legislation was passed to reduce the federal deficit by $4 trillion, some $1 trillion in automatic budget cuts would take effect in 2013.

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Dementia more costly than cancer, will become more common

Connecticut assisted suicide bill finally gets a hearing

An OP-ED for PBS: Inequalities in the health care system

Life Matters Media co-founder Mary F. Mulcahy, M.D., published her research about the racial and economic inequalities in the U.S. health care system for PBS. She continues to spread the message of advance care planning.

Mary F. Mulcahy
Mary F. Mulcahy

She writes:

“Racial disparities and inequities in American healthcare are evident in daily life, but regrettably they are also prominent in death. In these final days of Black History Month, it is imperative to reflect on the final days of all African-Americans and the choices they have within our health care system. These are the choices they aren’t taking, and the phenomenon serves as a means of further disenfranchisement from the medical community at large.

“The National Center for Health Statistics reports that African-Americans in home health care and nursing homes are half as likely as whites to have an advance directive, such as a living will or a do-not-resuscitate (DNR) order. This disparity leaves African-Americans at risk for unwanted medical procedures, unnecessary pain and family strife.”

Read the rest at PBS

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Death Cafe: A movement discusses end-of-life

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Combating malnutrition: Nine percent of seniors suffer

It’s an epidemic that to most of us, is invisible. A staggering four million seniors- almost one and ten- will suffer from malnutrition, according the American Academy of Family Physicians. The impact of malnutrition upon a senior is all-encompassing, often resulting in depression, improper healing and a depressed immune system.

Image courtesy A Place for Mom
Image courtesy A Place for Mom

Dr. Lindsey Jones-Born, a licensed naturopathic physician, has provided a list of ways to combat and identify malnutrition in seniors. She writes that eating can often be uncomfortable for seniors, due to physical changes like dental problems or weakened taste buds. Lack of support or companionship often intensifies these changes. “Seniors face a plethora of challenges when it comes to maintaining a nutritious diet,” Jones-Born writes.

To help recognize senior malnutrition, Jones-Born recommends taking stock of a loved one’s pantry and refrigerator. Checking specifically for old food and taking note of food amounts can reveal what is being consumed. It may also be helpful to watch for sudden weight loss and the fit of clothing.

She encourages five essential nutrients as part of seniors’ diets: Folic Acid, B12, vitamins C and D, and fatty acids. Plenty of water is also important, as some 30 percent of seniors are chronically dehydrated.

Income and malnutrition

Low income often results in malnutrition in seniors, according to The New York Times’ Paula Span. Last year, Span reported that the Government Accountability Office pointed to “food insecurity” as a major problem affecting seniors.

In 2009, some 20 percent of households with a low-income person over age 60 struggled with food insecurity. “These adults were uncertain of having or unable to acquire enough food because they lacked resources,” according to the report.

According to the G.A.O. report, “Older adults can and do access a number of resources to help alleviate food insecurity; however, many low-income older adults likely to need assistance from meals programs did not receive it.”

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Death Cafe: A movement discusses end-of-life

LMM’s Valentine’s Day message in The Huffington Post

Hospice remains a last resort, despite increase in deaths

LMM’s Valentine’s Day message in The Huffington Post

Life Matters Media co-founder Mary F. Mulcahy, M.D., has shared advice about pacemakers and caring for the aged in a new feature for The Huffington Post. She continues to spread the message of advance care planning.

George Hodan
Image: George Hodan

“Our attention turns to the heart this time of year, as signs of Valentine’s Day surround us. It is the organ that works harder than any other muscle in the body, with an electrical system that fires more than 3 billion times within an average lifetime. Starting with the first “whoosh” heard during an obstetrician’s office visit and working until that flat line we see on all-too-many doctor shows, the heart beat is the most recognizable sound known to man.

“More than 400,000 Americans each year take advantage of medical technology to replace a faulty cardiac electrical system or worn out heart muscle. But what happens when the rest of body is ready to die? Is there an appropriate time to flip off that switch? Rapid evolution of medical technology and our own lengthening life spans demand that we consider these questions.

“In the past two decades, pacemaker use in this country has increased by more than 50 percent; globally, such devices have reached even the hearts of the Vatican, as we recently learned that Pope Benedict XVI has had one installed for many years. This technology is currently enhancing the quality of life for more than 3 million of us in the United States.”

Read the rest at The Huffington Post

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Hospice remains a last resort, despite increase in deaths

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The lack of advance care planning persists

Image: CDC
Image: CDC

Although more affordable senior care services are emerging as the U.S. population continues to age, most still do not plan for end of life care, as The Associated Press’ Matthew Perrone reports.

“Nobody wants to go to a nursing home, it’s the last resort,” James Firman, president of the National Council on Aging, told the AP. “People want to stay in their own home, and if they can’t, they want to go to a place where they can get assistance but that still feels homelike.”

Nursing homes continue to be the most intensive and expensive form of long-term care, which often includes 24-hour medical supervision, the AP reports. The average cost of a semi-private room in 2011 was $81,000, according to a survey by MetLife. A private room can cost more than $90,000, as the average daily rate for a private room in a nursing home rose more than 4 percent in 2011.

Most seniors will not require extended nursing home care. However, Medicare does not cover less intensive care options, such as in-home help with meals and chores.

“The issue is that these are long-term costs and almost all of it comes out of pocket,” said John Migliaccio, director of research for Metlife’s Mature Market Institute. “It’s important to have some idea about what it will cost dad, mom or your husband to get the care they need.” Only some 5 percent of adults have long-term care insurance to help pay for these services. Some policies can cost $8,000 a year.

The National Association for Professional Geriatric Care Managers recommends families discuss long-term care options early on, before a medical emergency.

“Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal,” LMM co-founder Mary F. Mulcahy, M.D., wrote for The Huffington Post. “Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying.”

In 2000 there were more than 35 million Americans 65 and older. By 2030, there will be 72 million. According to the Georgetown University Public Policy Institute, almost 10 million seniors currently rely on others for daily care.

Learn more from the Life Matters Media Newswire:

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National Institute of Medicine recommends improving end of life care

The National Institute of Medicine will soon convene experts to review federal policies and hospital practices to aid improvements in care for dying patients and their families.

“During the last century and more, death has evolved from a common family event centered in the home to a medical event occurring in a distant medical facility overseen by trained experts and administrators,” the Institute reported when announcing the study, “Transforming End-of-Life Care.”

The committee’s findings will lead to a report on the current state of end of life care in the U.S. The far-reaching study will address delivery of medical care and support, doctor-patient communication, advance care planning and financial reimbursements. The committee will focus especially on  demographic and cultural changes.

The committee will also review the Institute’s 1997 report, “Approaching Death: Improving Care at the End of Life,” which sought to increase understandings of care and the need for improvement.

Silicon Valley’s MercuryNews reports that recommendations from the private nonprofit arm of the National Academy of Sciences often make their way into laws and federal agency policies.

First meetings will occur February 20 and 21, 2013, at the National Academy of Sciences building. The committee is chaired by Dr. Philip A. Pizzo, from the Stanford University School of Medicine, and Dr. David M. Walker, of the Comeback America Initiative.

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Hospice enrollment policies contribute to underuse of care

Hospice enrollment policies contribute to the underuse of hospice care in the U.S., according to new findings published in the journal Health Affairs. Findings from the first national survey on hospice enrollment policies found 78 percent had at least one policy restricting care access for high-cost patients.

Although almost all Americans live within close proximity to a hospice, more than half of patients eligible for the care die without it. There are more than 3,500 hospice providers in the U.S.

Some 600 hospices were studied, and according to researchers, “patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition,” had a greater likelihood of facing the restrictions. Limited enrollment policies were identified in both for-profit and nonprofit hospices. These restrictive policies include not receiving chemotherapy, total parenteral nutrition, blood transfusions, an intrathecal catheter, radiation therapy, tube feedings or requiring a primary caregiver at home.

“It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a palliative care researcher at the Mount Sinai School of Medicine.

The aim of hospice care is to manage the pain and symptoms of the terminally ill so that their last days are spent with dignity. The care is not intended to treat the disease.  Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less. Medicare states that to elect the Medicare hospice benefit, an individual “waives the right to receive all other Medicare covered services for the terminal illness and related conditions.”

Hospices may restrict access because of current Medicare reimbursements, which account for more than 80 percent of hospice revenue. The reimbursements do not cover treatments related to a patient’s terminal illness, so a hospice must pay for it. As Carlson points out, the average per diem reimbursement is only $140 per day.

The researchers explain, “many patients with terminal illnesses can benefit from using oral chemotherapy for palliative rather than curative purposes; radiation; or blood transfusions for treatment- or disease-related low blood cell counts.” Any one of these treatments can cost more than $10,000 a month.

Open access policies allow enrollment of those who are not yet eligible for the Medicare hospice benefit, anticipating that they will remain with the hospice when they do become eligible. Patients receive the medical comfort and social support available through hospice while simultaneously retaining access to medical treatments for their disease.  Such patients may be covered by private insurance plans or pay for the care out of pocket.  However, initial reports indicate that the cost of caring for patients enrolled through open access policies is generally absorbed by the hospice provider.

The authors conclude that increasing the hospice per diem rate for patients who require complex palliative treatments and removing the Medicare hospice benefit limitation on concurrent care may enable more hospices to expand their enrollment to patients who need and want it.  Providing hospice services in a cost effective manner for those whose treatment plans include concurrent life-extending and palliative care is the subject of the a pilot project funded by section 3131 of the Affordable Care Act, although results for this pilot project are years from completion.

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