The Patient Protection and Affordable Care Act (ACA) of 2010 is now more than a year and a half old, old enough for us to see the impact of some of its provisions, not nearly old enough to know if it will be successful in fundamentally changing the way healthcare is provided in America.
For those of us caring for loved ones with chronic conditions, change can’t come soon enough. Today, the delivery of healthcare in America is built on an acute care model, meaning someone comes into the ER with severe abdominal pain, acute appendicitis is diagnosed, the person is rushed into surgery, and the appendix is removed. There are no complications; end of story.
But when someone has diabetes, MS, Alzheimer’s disease, spina bifida, or any other condition that has no cure, the story is very different. Physicians get paid based on the number of procedures they perform, not the quality or outcome of the care they provide. When dealing with chronic conditions, there may not be any “procedures,” per se, that can be billed. Understanding and monitoring symptoms over time, meaningful conversations with a patient and his/her family caregiver about their quality of life, coordinating care with other physicians, these things are not considered “covered services” by either public or private insurance.
It would be nice if someone could say, “Listen up, everybody, within the next six months we are going to make healthcare in America more patient- and family-centered, more chronic-illness friendly. We are going to pay for quality, not quantity. We are going to fundamentally change virtually everything about healthcare in America so that it is easily accessible, affordable, high quality, safe, and cost effective, no matter where in the country you live.” Obviously, this can’t happen. Healthcare is a multibillion-dollar industry involving many different professions and types of companies. A physician’s practice in New York City is far different from the practice of a “country doctor” in a small town in North Dakota, as are the hospitals to which they send their patients.
Knowing what we want our healthcare system to be is one thing. Figuring out how to transform our existing system into our desired system is quite another. That job — determining the best ways to provide the best care for everyone — is the job of a new entity within the Centers for Medicare & Medicaid Services (CMS): the Center for Medicare and Medicaid Innovation (the “Innovation Center”). The Innovation Center was established by the Affordable Care Act with the specific purpose to research, develop, test, and expand innovative payment and delivery arrangements to improve the quality and reduce the cost of care provided to patients. Successful programs can and will be expanded nationally. The Innovation Center officially came into being at the end of 2010.
Among the various programs that the Innovation Center will test are several that are particularly noteworthy for family caregivers and their loved ones:
Sec. 3024 Independence at Home (IAH) Demonstration Program
This demonstration program is based on many years of actual practice whereby physicians visit very sick and elderly patients in their homes rather than making them come to the office. This has many obvious advantages, not the least of which is making things easier, and safer, for patients and their family caregivers. Home care medicine is holistic. It includes education for patients and family members alike, as well as coordination of necessary social services.
Current practitioners of home care medicine know from experience that the care they provide is better for their patients and that it saves money, so much so that the authors of this part of the Affordable Care Act actually guaranteed Medicare a 5 percent savings from this program. The program will be evaluated on multiple levels, including feedback from patients and family caregivers. Congress has already agreed that if the demos show the results expected, it will immediately authorize the funds for the Independence at Home program to go national.
Sec. 3026 Community-Based Care Transitions Program
Cheri Lattimer, RN, executive director of the Case Management Society of America, thinks we need to remove the word “discharge” from the medical lexicon. “Discharge” implies something is over, but patients leaving hospitals are moving to a different care setting; their care is hardly complete. Transitions imply a continuum, not an ending. Think about it. Currently, family caregivers and their loved ones are the only people who are consistent across all care settings. The professionals change along the way.
The problems that occur because of bad care transitions are numerous, causing hardships for patients and families and unnecessary costs for Medicare and private insurers. As with Independence at Home, those hospitals, health systems, and healthcare professionals that utilize good transition procedures report fewer medical errors, far better patient outcomes, and significantly less costs. A state Medicaid director once said: “Care transitions are like black holes that continuously suck up money.”
The programs funded by the Innovation Center are intended to change all this. They will be targeted toward high-risk Medicare patients and family caregivers and will include timely post-hospital-discharge follow-up services to enable patients to comply with the instructions they were given, to lessen anxiety and concerns, and to make sure that all the doctors and other healthcare providers involved have the same information and the same understanding about what is needed next. In short, the whole idea is to prevent problems for all concerned before they begin.
Sec. 3502 Establishing Community Health Teams to Support the Patient-Centered Medical Home
Some time ago, NFCA published an article about the new healthcare law that discussed medical homes — what they are, what they aren’t (TAKE CARE! Summer 2010). They aren’t a new name for nursing homes. They are a way to provide patient-centered (and family-centered), well-coordinated care to the general public. In order for these practices to work, they need a health team that includes healthcare providers, patients, caregivers, and others in a holistic approach to ensure that the care that patients and family caregivers receive is high quality and safe, and supports the whole person. For large medical practices, or health systems, these teams can be internal, but given the fact that 85 percent of all doctors in America are sole practitioners or have only one or two partners, these teams may well need to be community-based businesses that contract with doctors, pharmacies, hospitals, labs, and social service and home care agencies in order to provide the necessary coordination and patient and family support required.
The establishment of these teams may be the most exciting of the Innovation Center programs. Seriously burdened caregiving families should not be left alone to navigate the healthcare and social support systems on their own. They need a coach, mentor, coordinator, advocate (pick whichever name you like) who can guide them, ferret out information, explain things, and help during times of crisis, but also when life is in a relative state of calm.
To know that you have someone to turn to, that you don’t have to fight multiple battles on your own, to know that someone cares, this would reduce the stress of family caregivers and, with it, their high potential for developing a chronic illness of their own.
Sec. 3503 Medication Management Services in Treatment of Chronic Disease
More people end up in the ER because of problems associated with taking medication. In fact, more than 100,000 people a year die because of medication-related problems. To have a program that involves a pharmacist working with patients and/or family caregivers to educate and train them on the specific issues that surround the medications they are taking will be a wonderful benefit. To have a pharmacist actually develop a medication plan according to therapeutic goals agreed upon by the prescriber and the patient or caregiver will go a long way toward minimizing the problems that currently lead to those ER visits and deaths.
What It All Means for Family Caregivers
The Innovation Center projects are experiments, but they are not first-time experiments. These projects have been tested in one way or another and have been shown to have enough promise that they are worth taking to the next level. Their goal is better care for persons with chronic conditions and it is clear that the crafters of the Affordable Care Act believe that family caregivers are important participants in that care, and, thus, need guidance themselves.
It will be quite a while before the results are known. Family caregivers can help move things forward by sharing the information about these provisions and how important it is that they get implemented. For instance, Section 3502 — the community health teams program — cannot even get off the ground because no money has been appropriated for it.
What can family caregivers do?
- We need to press for the necessary funding to implement these programs.
- We need to tell our stories about the problems that are created by a lack of good transitions of care, about the difficulties of getting our grandmother to the doctor because she is so frail, about the problems caused by mismatched prescriptions and the lack of holistic care coordination.
- We need to tell our stories to our elected officials and let them know of our availability to share these stories with others.
- We need to educate our doctors so they can better understand our role as a health team member. Doctors need to know that the government wants to hear from family caregivers about our experiences with the healthcare system, not just those of our care recipients. Our elected officials want to know about the quality of care being provided and they are expecting us to weigh in on this and other issues.
The Centers for Medicare & Medicaid Services is jumping into uncharted waters with the creation of the Innovation Center. It is testing new and novel ways to institute change that will have an impact on healthcare quality, safety, and cost. It is striving to fundamentally change the way medicine is practiced in the U.S. and how families living with chronic conditions can live healthier, happier lives. It is our job as family caregivers — indeed, it is in our best interests — to make sure the Innovation Center programs succeed.
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