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Where are we going with long-term care?

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Robert Kane, M.D., Professor and Endowed Chair in Long-term Care and Aging
Robert Kane, M.D., Professor and Endowed Chair in Long-term Care and Aging

Editor's Note: Robert Kane sent this blog on March 2, shortly before he passed away. A full obituary can be seen here.

Long-term care was never planned. It was never even consistently defined. A generally useful definition is that it is a set of services to assist persons who have lost, or never acquired, basic capabilities for self-care and management. An important trust of this definition is that it is not centered on medical care, although LTC recipients typically need such care as part of a larger service package.

The underlying drivers of LTC are quite different for younger and older persons. Younger persons with disabilities typically suffer from congenital or acquired conditions that do not require active ongoing medical treatment. Their social goal is to live a full life with active participation in all aspects of society. By contrast, the need for LTC among older persons typically arises from one or more medical conditions. Their goal is to preserve their accustomed lives as much as possible, but many have accepted the idea that aging is synonymous with frailty. Their efforts are devoted to avoiding being placed in institutions.

LTC was the product of unforeseen circumstances, shaped by responsive acts around regulation and payment. The centerpiece and reference point has been the nursing home, which was conceived as a miniature hospital with minimal technical capability. Modest care comes too often at the cost of personhood. Public debate about LTC policy focuses on cost. But buying something you don't want, even at half price, is no bargain.

Given the growing demographically-driven demand for care in an environment with relatively fewer people who can both provide care and provide financing, It is essential to recognize that simply doing more of the same will not suffice and will bankrupt us. This crisis should be seen as an opportunity. Small fixes will not work. It is time to start over to build a LTC system that provides what people say they want.

The place to start is with what people say they want in LTC. When we talk with those who give or receive LTC we hear a common set of descriptors of what they value. They talk about choice and autonomy or control. They want to be seen as people with a life and a personality, not some inanimate objected to be tended. Ideally, they want to contribute to the world around them. They want respect and dignity, even when they are dependent on others for their intimate care. They do not want to be infantilized and over-protected. They want the right to take informed risks. It is safe to assume they also want competent medical and nursing care, but this is not at the top of their list.

If we used this list as a criteria checklist to rate how well we are doing with LTC today, we would have to give ourselves low marks. Much of this failure stems from LTC's origins in medical care. It was always the poor relation but never looked to see if that was even the goal. That is why small steps will not suffice. This is not a time for replacing roof shingles. We need to tear down the house to its foundations and rebuild according to a new set of blueprints.

That plan should be built around a recognition that LTC is based on three components: 

  1. Personal services
  2. Living setting
  3. Medical care (largely for chronic conditions).  
The nature of a person's needs for care should not dictate where or how that care is provided. No solution will fit everyone. We need options and flexibility. Personal preferences and circumstances will require adaptation, and inevitably require trade-offs. For different people, some elements will be more crucial than others. Ideally, that choice should be left to each recipient, but when public dollars are involved, some efforts at efficiency will be necessary.

To identify and build LTC systems of the future we must begin by thinking creatively about alternative ways to package the three core components. We need to emphasize what we want to buy before we start debating how to pay for it. No one can deny the importance of a financing and payment structure, but this discussion should not precede defining what we want to buy. While proactive medical care is a core ingredient in any system addressing persons with multiple chronic conditions, the goals of LTC transcend medical and nursing care to address what makes life meaningful, even for persons with few resources.

The social transformation will require a major shift in public perceptions of LTC. To get public backing and legislative support, LTC must be viewed as a valuable service. Candidates should campaign on improving it and investing in it. Too many people see LTC as a necessary social service, but one that does not provide important benefits. Contrast the public's perception of LTC and hospice care. The latter is viewed as much more effective, largely because it has defined an achievable goal, essentially making the last phase of life as positive an experience as possible. As a result, it is much easier to recruit workers and raise support for hospice care. LTC by comparison is charged with keeping safe and slowing the rate of their decline while compensation for those losses. Demonstrating the success of good care requires having some comparator by which the public can see the benefits of slowing decline and associated care.

A key element in these discussions is our tolerance for letting older people take risks. In the name of protecting these people we have defined as vulnerable, we run the risk of infantilizing them. Although they may be dependent, they are not children; most are capable of making thoughtful decisions if they are given adequate information on the benefits and risks of alternatives. Over and over, autonomy sits at the top of the preferred attribute list for LTC, but concerns about safety threaten it.

Thinking creatively means casting aside familiar ideas and issues to identify new ways of doing things. In an era of blossoming information technology, it seems likely that IT can and should play a central role. IT provides the means for distance monitoring (but not giving care). It allows social interaction without leaving home. It facilitates supervision, including prompting, and thus may supplement, or even supplant, some training.

Choices around living arrangements will vary with personal preferences. Some older people will want to live among younger, including their caregivers. Others will prefer being with people more like them. With higher needs, especially for unpredictable services like toileting, some degree of congregate living will be needed to reduce caregiver travel time. But congregate living does not mean ceding control of one's life. An older person would still control access and determine the daily schedule.

Eventually we will have to confront some major issues around payment, regulations and resources. Given its tawdry origins, it is not surprising that the nursing home has been heavily regulated. But regulation is, at best, useful for addressing poor performance. We need an approach that rewards good care. Many people have given their careers to implementing the extant regulations and will have problems ceding any ground, but we must. The LTC world today is different from what it was when Medicaid began. Regulations should support program goals, which, in turn, should be based on desired attributes.

Payment should re-enforce regulations. Some form of quality-based payment is needed, which rewards achieving these attributes. Some efforts will need to be retained to counter abuse and neglect, but the major thrust should be positive, not negative. The larger payment question is whom to pay. The aspirations for LTC are anti-institutional. Community care will require a continuing active role from informal caregivers, who are under increasing strain as their numbers diminish and the demands on their time increase. At a minimum, people should not be penalized for receiving informal care. One way to address that is to offer some discounted payment in lieu of covering services directly. This cashing out of benefits approach has been used in Germany and elsewhere as part of a larger effort to support consumer-directed care, and has grown in this country. Marrying a cash payment to an outcomes incentive poses a challenge.

The related question is who should be covered. Unfortunately people are increasingly entering retirement with very limited financial resources, certainly not enough to weather any LTC challenge. Efforts at inducing private LTC insurance have foundered for various reasons, but primarily because a voluntary program is actuarially unsound. Some variant of universal coverage will be needed for core services, with allowance for people (or families) to top off that amount. The coverage should be limited to services and not housing. We have a long-standing tradition of allowing people with greater financial resources to live in better accommodations and providing more modest ones to those in need of support.

Another challenge is what to do with the heavy real estate investment in LTC. Both for-profit and non-profit organizations have invested heavily in buildings in which to provide LTC. Much of that care is the institutional variety we are working to eschew. Some institutional care, for persons who have lost touch with their surroundings, may be needed still. Some can be converted to post-acute care, an area of growth in the nursing home industry anyway. For many reasons LTC and post-acute care should be more separated anyway. However, much of it will need to be discarded. Nursing regularly complain that the government made them what they are today and needs to look out for them. Some form of corporate welfare may be needed.

An essential part of the new world of LTC will be useful consumer information. Clients and families need better information about what works best for whom in order to make informed decisions. They also need to know of the quality of service providers. We have made modest inroads into collecting limited amounts of information about nursing homes and home health, but not around the attributes of care deemed most salient. If we hope to bring about the changes we deem urgent, we need to garner public support. The public will not likely champion a service they see a failing. We need better information that demonstrates the benefits of good care. We do not have a widely used method to compare care outcomes with what would have occurred in the absence of such care. But we know how to build them.

Robert  L. Kane, M.D., was the professor and endowed chairman in long-term care and aging at 
the University of Minnesota School of Public Health. 


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