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.