When the Congressional Budget Office released their “Health Budget Options” report last week, I eagerly scanned through the tome for recognition and support for caregivers—like myself—of people with disabilities or chronic health conditions. We’re mentioned in a parenthetical in Chapter 10 on Long Term Care:

“(Much long-term care is provided personally by the family and friends of elderly and disabled individuals.)”

Earlier in the chapter, CBO points out that patient/family out-of-pocket spending accounted for 20% of the total long term care spending. While one-fifth of spending is a lot, I think it probably underestimates the full value of direct care provided by the family, purchases of needed non-prescription and non-reimbursed medical equipment and supplies, and lost income by the caregiving family members.

CBO does make some oblique references to the magnitude of unaccounted-for care in its discussion of the pros and cons of adding home-based care incentives to Medicaid—the dreaded “out of the woodwork” factor—the number of people they cannot count who might come forward for services and wreck federal-state budgets. (more…)

The holidays are upon us, and we all know what that means for health issues — besides higher sugar and alcohol intake. That’s right, healthcare reform house parties! Check out the message from HHS Secretary nominee Tom Daschle below, and learn more about hosting or attending a healthcare community discussion over the holidays.

Meanwhile, four issues dominating discussions around the web this week are the future of the FDA, the new Nursing Home Compare rating system and web site, physicians and health IT, and of course, healthcare reform issues.

At the Center for Medicine in the Public Interest DrugWonks blog, Peter Pitts shared his recommendations for reforming the Food and Drug Administration:

I was honored when the Obama FDA transition team called and asked for my advice on how the incoming administration could make the agency a more robust and forward-looking regulatory instrument.
…
My suggested areas of focus are

1. A strong, science-based FDA
2. The Reagan/Udall Foundation — a Partnership of Unequals
3. Clarity vs. Ambiguity
4. Information Management
5. Food Safety and Security
6. Risk Communications
7. The Drug Label and the “Safe Use” of Drugs

…
There are, obviously, many, many other important issues … and I look forward to working with the transition team to ensure that the new commissioner can hit the ground running… And kudos to the Obama transition team for reaching out to a wide variety of groups.

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Having received the diagnosis of stage 4 pancreatic cancer dad decided that his remaining days should be oriented toward providing him comfort rather than treatment. I had not heard the term (actively dying) before dad was admitted into inpatient hospice. It was a brief stay following his collapse at home. It seemed that he would have preferred and felt safer and more secure to stay longer; perhaps it was the supportive listening and personal care and attention they provided. Or the three meals a day he could have (if only he had an appetite). Or the audiences who came into his room and listened to him conversing fluently in various languages.

But the staff said that he was not yet “actively dying” and there was little (no?) need for him to remain on the inpatient hospice. Yet seeing the sad and fearful look in his eyes, the physician quietly mentioned that perhaps he could remain on the unit one more night. So he stayed another night and then we finalized the plans and arrangements for him to go home with round the clock home health aides.

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November is National Family Caregivers Month, designated by the government to recognize the efforts of spouses, children, and other family members in giving free care to loved ones struggling with chronic health needs. The impact of caregiving is significant—billions of dollars of uncompensated care, billions of dollars of lost productivity, and increased stress-related health conditions among the caregivers.

- 17% of family caregivers are providing 40 hours of care a week or more.
- The value of the services family caregivers provide for “free” is estimated to be $306 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

As a caregiver and a health policy expert, the statistics that were the most painful to learn:

- 22% of family caregivers say they need help communicating with physicians.
- 50% of caregivers reported that different providers gave different diagnoses for the same set of symptoms and 62 % reported that different providers gave other conflicting information.
- Over 40% of U.S. primary care physicians think they don’t have enough time to spend with patients.

Communication is such an issue that the National Family Caregivers Association (the source of these statistics) chose as the topic of their first two national teleclass/webinars, “Communicating Effectively with Healthcare Professionals.” In addition to learning how good communication can facilitate optimum health care and how to prepare for doctor office visits, the classes also featured how to:

- Distinguish between different styles of communicating with healthcare professionals
- Compose assertive messages for communicating in healthcare situations
- Be prepared for and cope with an emergency room visit.

I’ll be celebrating National Family Caregivers Month by reaching out to other family members and friends about effective communications with their physicians and other healthcare professionals.

More details and resources for caregivers are available on NFCA’s website at: www.nfcacares.org, and the National Alliance for Caregiving at www.caregiving.org.

Last Monday, Stephanie Mensh wrote about her experience with medical homes. Dr. Pamela Mitchell, President of the American Academy of Nursing, has provided Disruptive Women with another perspective.

Guest post by Pamela H. Mitchell, RN, PhD, FAHA, FAAN

There is much talk these days in health professional, health payer, and even legislative circles about the “medical home.” This is a term coined in 1967 by the American Academy of Pediatrics. The medical home was originally meant as a single place for a child’s medical record and was particularly salient for children with special care needs. It later expanded to denote the one place that families with children with special care needs might obtain coordinated, continuous, family-centered and culturally effective care.¹ The concept of a medical home has additional roots in recognized needs for care coordination for people with chronic illness in managed care, case management, disease management and comprehensive discharge planning for complex or chronic illnesses. Most recently, a coalition of the American Association of Family Practice, American College of Physicians, American Academy of Pediatrics, and American Osteopathic Association developed and disseminated “Joint Principles of the Patient-Centered Medical Home.” This document defines the Patient-Centered Medical Home (PC-MH) as “an approach to providing comprehensive primary care for children, youth and adults. The PC-MH is a health care setting that facilitates partnerships between individual patients, and their personal physicians and, when appropriate, the patient’s family.”¹ At its best, this new movement promises quality, coordinated care for people, rather than their diseases. Further, it recognizes that care coordination and management is a complex skill that deserves payment in our current payment system. However, because of the consistent emphasis on physicians as the home “owner” and leading partner, it connotes care centered in a particular practice profession rather than care for the person or family who comes “home.”

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Having recently received an email notice from an online health related news service, I was drawn to and intrigued by two pieces about long term care and family care giving. Within seconds I found myself clicking on link after link to see what information and materials I could find that might be applicable to our family’s current situation. I read about additional efforts to provide resources to conduct research on end of life and care giving issues. And we found organizations offering help to family caregivers.

In retrospect many of the signs and symptoms had been there for weeks maybe even months. Fatigue and weakness, weight loss, loss of appetite. “Meryl”, he said, “I am just not feeling well.” But it was more than just being 81 years old and feeling tired. It was more than mourning the loss of his wife (my mom) who had died two years earlier. Dad had been recently diagnosed with stage 4 pancreatic cancer. As he says, “the news was ominous”. For us, the news was indeed emotionally difficult as we discussed and negotiated how to help dad through the weeks and months ahead.

So began a virtual journey as I traveled the equivalent of what must be thousands of Internet miles seeking as much information as I could from dozens of web sites about home health and personal care services, hospice, family care giving, home health care, and end of life care. There in front of me were pages and pages of sites with information. So, what do we do? Hundreds of questions with no right or wrong answers.

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A Medical Home may be coming to your neighborhood soon—and it’s a welcome first step to help consumers and caregivers coordinate complex medical services for family members suffering from chronic, debilitating diseases. CMS will be hosting a public telephone “Open Door Forum” on October 28 describing Medicare’s new Medical Home Demonstration Program, set up by 2006 Medicare legislation, aimed at recruiting primary care physicians and local health clinics to sign up when the program begins next year. (more…)

Regulate–deregulate. Can we really solve the crises in the economy and health care by doing one or the other? Is it really so simple?

I’m not an economist, but I am a nurse and journalist who can tell you that regulations in health care serve to protect the public. They can also get in the way of better care.

Consider the story of Dr. Meridean Maas, RN, and Dr. Janet Specht, RN, two advanced practice geriatric nurse specialists who had extensive expertise in long-term care of people with dementia. Based in Iowa, they realized that the facilities where they had worked were not places in which they would put their own parents. They believed they could provide a better model of care and decided to prove it. They took out a loan for $350,000 and a received a grant from the Iowa Development Corporation to purchase a ranch-style home with acreage that they called Liberty Country Living. They created a home-like atmosphere for people with dementia who dressed in their own clothes and could walk the fenced-in property without fear of becoming lost. Staff ate with the residents and got to know their interests and backgrounds, often encouraging the residents to engage in activities that held meaning for them. Family were told to come any time and supported in being with their loved ones as much as possible. (more…)

Sarah Palin makes me angry. She claims to represent families with special needs, but I can’t point to much that she or John McCain or 8 years of George W. Bush have accomplished to earn this claim. From my vantage point as a caregiver for 20 years to my husband, Paul, who became disabled at 36, and—full disclosure—as a Democrat, I believe that the government has a responsibility to provide for people with disabilities and chronic health problems, and their families. We need creative, supportive, innovative leadership to lift up the hopes and futures of these citizens.

My husband Paul had a ruptured brain aneurysm, resulting in a stroke that left his speech severely impaired and his right arm paralyzed. Over the years, we have met many other people and their families who are coping with significant disabilities. I can tell you that the number one trend in recent years is the decrease of, and lengthened waiting lists for, the services that these families rely on—health insurance coverage, Medicare, Medicaid, vocational rehabilitation, special education, transportation, and much more.

I’m all for personal responsibility, and I can assure you that families like mine take on a tremendous amount of responsibility. But it’s really hard to fight back and conquer impairments when you can’t get the basic rehabilitation and training you need.

Besides being responsible for the decline of services (not to mention research budgets), the current administration, through the waging of war in Iraq, has created a whole new generation of people with disabilities, such as the mild (often not recognized for some time) to severe brain injuries caused by road-side bombs.

I would like to hear Palin and her supporters explain exactly what the Republicans have done and plan to do to help people with disabilities aspire to and acquire a good job, a fulfilling life, and independence. We need more than a friend in the White House. We need advocates who will make a real difference.