Panel Presentation: Long Term Care and Caregiving

Carol Levine

Families and Health Care Project, United Hospital Fund


I would like to thank the organizers of this conference for inviting me. It is yet another sign that family caregivers are achieving their rightful place in the policy agendas. I would especially like to acknowledge the leadership of Secretary Shalala and Assistant Secretary Takamora in this field. They have started a really fantastic effort that I hope will see some fruition this year and, if not, then in the coming years.


On the plane last night, I picked up the October issue of Discover Magazine. It is all about what the world will be like in 2020. They listed a number of things to which we can look forward. For instance, as an earlier speaker mentioned, the article suggests that our houses will talk to us. Although, frankly, I cannot imagine having a meaningful conversation with my toaster, I do look forward to the potential ease of this technology.


The magazine also listed some of those things that will stay the same, and among them is poverty. I think we must not forget that there will still be poor people as we paint the picture of our next century. We will still have pencils. We will still have books. We even will still have cash, with the ATM making access to it easier. And my personal favorite, we will still have shopping. So life will not be altogether different, and I think the point is that all of these technologies that we can look forward to, or worry about, will be introduced into an already existing system. So it is not going to be a whole new world, but it certainly will be a changed world.


As you heard, I direct the Families and Health Care Project at the United Hospital Fund. The Fund is a prominent health services research organization and philanthropy. So I speak to you from the perspective of someone who has 25 years of experience in medical ethics and health policy. I also speak to you as someone who has been a family caregiver for the past 10 ˝ years. My husband suffered a severe brain stem injury in an automobile accident in 1990, and he was left totally dependent. I have been caring for him at home since he was discharged from a rehabilitation facility in 1991. He is 72. (And, as a matter of fact, he is a veteran. So I have just been sitting here thinking, “What a minute, here’s another agency that I can get on the case.”) I created the Families and Health Care Project to raise awareness about the challenges we face. Over the last four years, I’ve talked to hundreds of family caregivers. So when I speak to you today, it is not just my experience, it is the experience of many other people.


I am really an optimist about technology. I like new things. I like new gadgets. I certainly like new things that make life easier. However, I want to make one caveat. We should not think about technology as replacing the essential human contact that the elderly, in particular, need.


There are considerable barriers to bringing appropriate technology into the caregiver arena. For instance, it is almost impossible to get meaningful insurance reimbursement for much of the technology already available. If technology can be accessed financially, there is inadequate training to teach users. If that barrier can be overcome, technology is bound to fail, and when it does, back-up is very hard to find and is usually delayed. Failed technology is worse, than no technology at all. Therefore, it is no wonder that many of us, as caregivers, look rather skeptically at futuristic prototypes of technical wizardry. It is hard enough to get the simplest things that exist and we need right now.


Let me give you just a few facts about family caregivers. There are approximately 25,000,000 Americans who provide some level of care for an elderly, disabled, or chronically ill relative or friend. This can be a very low level of care or intense around-the-clock care. We are the people who hook up the feeding tubes, push the wheelchairs, make the doctor appointments, provide the personal care, and pay the bills, or see that they are paid. Peter Oner and I published a study in health affairs that demonstrated that unpaid caregiver labor, if compensated at average market rates, would come to $196 billion a year. This is a conservative estimate, and it is more than the cost of formal home care and nursing home care combined. A recent random telephone survey of New York City caregivers found that, on average, city caregivers were providing 20.5 hours of work a week. Forty six percent of caregivers had been caring for someone for more than 5 years. Women caregivers outnumbered men by 3 to 2. There were a higher percentage of men, but they were doing the least intensive and the lowest level of care. Almost 85 percent of the caregivers were between the ages of 18 and 64—the “sandwich” generation. Over half were employed full-time. The persons whom they care for are primarily older relatives: parents, grandparents, aunts, and uncles. Over a third of the care recipients were between the ages of 65 and 79, and almost a third, 31 percent, were age 80 and over.


One might say that these care recipients were cared for successfully since they reached that ripe old age, but, on the other hand, they have not aged so successfully. Since 80 percent have serious health problems, half were hospitalized in the year preceding the survey, and hospitalization was a key event. It meant higher levels of care at home and more intense levels of care for the caregiver. For many, technology is already part of their care. About 12 percent of the caregivers reported that they operated medical equipment at home, such as feeding tubes, IV infusions, mechanical ventilators, oxygen, and so forth. Of the caregivers who used this type of technology, just under a fifth reported that they had had no instruction. Even if one receives brief instruction in the hospital, chances are, the machine that is sent to the home is not the one on which they received instruction in the hospital. It has different controls. It looks different.


In one of our videotaped focus groups, a caregiver described her reaction to having to operate a feeding tube for her husband at home. She said, “They showed me in the hospital—one, two, three—and then, they said, ‘now you know it.’ And then, I looked at that machine in terror.” Every time I show that video to health care providers, they laugh nervously. They know that they do not have the time to really show somebody how to operate that machine.


Among the elderly a large proportion have mobility impairments. There are canes, walkers, rollers, scooters, and wheelchairs to help them, but there is a reluctance, to use a benign word, on the part of government and private payers to pay for the appropriate Durable Medical Equipment (DME). A doctor trying to get Medicaid to pay for a scooter for a disabled woman recently wrote, “For those who are poor and disabled, health insurance needs to move its boundaries to encompass the functional, as well as the physiological.” I would add that it is not just the poor. Middle-class people cannot afford these expensive chairs, either.


Inadequate wheelchair seating is a problem in nursing homes, as well as in home care. A Robert Woods Johnson Foundation supported study by the Benedictine Institute for Long Term Care found that sitting in the right kind of wheelchair can make all the difference in the quality of life for disabled older adults. Of the nation’s 1.5 million nursing home residents, about half have wheelchairs (most of which are the standard sling-type chairs), that you go from one floor in the hospital to the other. These are the cheapest ones, but they are not meant for continuous seating. They lead to poor posture, forcing residents to keep their heads down. That leads to pressure sores, difficulty breathing, misaligned hips, to say nothing of difficulty interacting with other people.


If you can find a way to get the appropriate equipment, you still have to deal with repairs. Just this week, I read a Letter to the Editor in one of the disability newspapers reporting that one private insurer claims that it takes 14 days to approve a wheelchair repair. That is just to approve it, not to get it done.


I believe managed care has introduced a problem by limiting resources to vendors with whom an organization has contracts. I understand the economic concept, but economics are satisfied at the expense of the consumer. My own personal experience illustrates this. A leg on my husband’s hospital bed got bent. The company that supplied the bed no longer had a contract with the managed care provider, and the new contractor had to re-inspect the bed, approve the repair, etc. The entire process took ten days. My husband is a heavy man and, essentially, immobile. And he spent 10 days teetering in a three—legged bed, when another, more appropriate vendor for this situation, could have fixed it immediately. I do not believe there is a hospital in the world where it is acceptable to have a patient in an unstable bed for any amount of time, let alone ten days. But, once care is passed on to the home caregiver, these are the situations that we have to handle.


Transportation is another area where more thought needs to be given. Isolation of caregivers and the elderly is often cited as a problem, and lack of transportation is a key contributor to it. People in wheelchairs who cannot transfer to an automobile must use public transportation or have a van with a ramp and lifts. The former is often neither available nor accessible. Paratransit systems, while a good idea, are often unreliable and offer only a partial solution. Vans are very expensive and not practical for all environments, such as a city. The design of an affordable, regular automobile that facilitates easy transfer would be a boon to caregivers and offer a great deal of independence to these populations.


Communication is another big area, and I think the Internet has offered much progress. In my personal experience, I have seen the growth of many, many, resources through the Internet. Some are even always “on call” for caregivers. The United Hospital Fund has just given a grant to the Brady Institute at Jamaica Hospital to develop a website for caregivers of traumatic brain injury, and that has been a really exciting project.


Quality, however, is still inconsistent, and there are other bugs to work out. In upgrading our system at home, I wiped out the disability access program, so my husband is no longer able to use it. So far, I have not been able to find anyone to fix it. So sometimes new does not necessarily mean better.


Despite all the problems, I still have high hopes that technology can make life better for family caregivers and their loved ones and that these benefits can be made affordable to everyone. However, it will take a change of mindset. I often hear policymakers say, “We can’t pay for it.” What they are saying is, “We have chosen not to pay for it.” When we choose to pay attention to and pay for the things that improve the quality of life and daily functioning of all people with impairments, we will truly make it possible for all people of all ages, children to the elderly, to live successful and rich lives.