Restructuring long-term care: autonomy, ethics, and future facility design

LTC of the Future

Long-Term Care of the Future

Long-Term Care like all other areas of medical care is in a period of transition. The standards that were once thought of as acceptable for such care have evolved over the years to bring long-term care into better alignment with the needs of the patient, and this evolution will likely continue into the near and distant future. The results have been sweeping changes in some places and limited changes in others. Despite the fact that only a limited number of people ever enter long-term care facilities, 4.5% of those over 65 live in long-term care settings, with a breakdown in age groupings determining a greater number of individuals where those aged 65-74 constitute 1.1% those aged 75-84 constitute 4.5% while those 85 and above constitute 19%, with a clear incidence of need increasing with age. Of these individuals 25% will need care for longer than 12 months and 10% will receive care for 5 years or more. (Augich, 2003, p.3) the estimate is that about 22% of those over the age of 85 will require some institutional care in their later years. But most receive such care in their own home or in the home of a family member or other caregiver. (p.3)

LTC is fundamentally, seen as a solution of last resort for many and yet it will be in greater demand, and without contingency for broader payment and options in the very near future. To address this issue as well as many others regarding the nature and structure of a future LTC this work will look at relevant literature that develops ideation for best practices regarding long-term care, structure, standards and even payment. The work will develop an ideal LTC facility of the future by addressing current concerns and stressors and attempting to respond to them with structure and recommendations. The work will be separated into several subsections, all having to do with some aspect of LTC care, either ethically or structurally and then react to that concern through rational recommendations. Ultimately the LTC center recommended here will respond to all these various issues with fundamental and evidentiary-based systems, such as those provided here.

Autonomy

The single most important ethical issue, noted in the literature and in anecdotal evidence from elders and their care givers is autonomy. Elders' desire autonomy, in both simple and fundamental ways and institutional care often does not respond to this desire or this ethical dilemma. To some degree the reason for this is associated with the funding of institutional care in the U.S. The only significant long-term care funding system in the U.S. is Medicare, excluding Medicaid which does pay for some institutional care for the indigent. But in order to qualify for either one must be unable to pay for care otherwise and the Medicare program is associated only with skilled nursing care, intended for short-term rehabilitative care for those who are indigent, which means in many cases the individual must take a significant fall in resources to qualify. Medicare currently does not pay for non-skilled care, i.e. care that is associated only with intermediate assistance with activities of daily living that is not meant to transition an individual back to a home setting form a hospital setting after an acute medical crisis, but is intended to allow them to live in an institution for the true long-term. (Augich, 2003, p.4) (Plante, Demmers, Swaine & Desrosiers, 2010)

The current long-term care insurance and the only national one, Medicaid/Medicare does not therefore support autonomy and in fact may hinders it by creating a situation where an individual and/or couple must relinquish hard earned resources to qualify if they do not have the liquid capital to either pay for care privately, which is very costly or the familial resources to obtain it in a non-institutional setting. (Augich, 2003, p.4) So, as a welcome to the system many individuals may see a permanent loss in potential future autonomy, by having the relinquish resources to respond to immediate needs and having little if any recourse to recover them for fear of later need for care. What compounds the problem is that more families are separated by geography than ever before and the population is aging. So, the social safety net that is Medicare must at some time in the near future respond to these issues and reform the manner in which it provides this long treasured social safety net. (p. 4)

Ethical care would in the future need to consider autonomy as a high order need for individuals, and this will likely begin with a restructuring of funding to make it possible for individuals to have a home to go home to when and if they ever need transitional skilled nursing care and at least the minimal resources to take care of it when and if they return. Additionally autonomy may also include variations in intermediate care so that, at this point individuals can relinquish now unneeded resources to pay for care or distribute it according not to necessity but real desire. Augich in his extensive work on autonomy in old age demonstrates a salient point regarding the fundamental need for increasing autonomy, when he describes the figurative ideation of a nursing home; "Nursing home are…total institutions. Like army barracks, mental hospitals, nunneries, and prisons, nursing homes are total in the sense that they isolate, control, and reconstitute the daily lives of their residents. Stripping away and reconstituting the identities of their residents through rituals of initiation and degradation accomplish this." (p. 5) From this definition Augich stresses that simply associating an increase in autonomy to the long-term care setting does not make it so, and that more needs to be done than simply applying the buzz word autonomy to the scenario. The work goes on to discuss the fact that because of the definition of autonomy as one that encompasses complete self-reliance and equates limitations in self-reliance as one equated with a sense of worthlessness. Therefore individuals who out of necessity must seek the kind of care offered in a nursing home or rather a long-term care facility often enter as if they have become utterly worthless and are then supported in this feeling by having to adjust to the structure of the facility that removes self-determination. (p.7)

The long-term care facility of the future should attempt to respond to all these ethical issues, first by establishing what autonomy means in the face of dependence and frailty and then by responding to this definition with services that are designed to meet the needs of individuals without stripping them of their dignity and personal choice. This can and should include simple things like adjusting wake up times and meal times not to better meet the needs of staff task schedules but to better meet the needs of individuals residing in the facility. Some of these changes have already been instituted in intermediate care but they also need to be applied to skilled nursing care institutions. The demands of this will be answered largely by increasing staffing, and improving staff skill sets, which will be discussed later in this work.

The confines of long-term care often rely on security and safety of the patients as the singular reason for most restrictions, and this can include everything from restricting free movement in and out of the facility to physical or pharmacological restrains (though the later two are much less commonly used today than in the past) (Clemmitt, 2010, p. 346) these issues are of paramount concern for the reestablishment of autonomy and the balance care facilities must maintain to keep individuals in their charge safe from harm. (p. 30) the manner and way in which this balance is reached is a matter of some discussion but some researchers contend that the population needs to be more thoroughly researched with regard to the efficacy of medical interventions that might help cognitively impaired or other patients better manage their physical surroundings and therefore have fewer falls and other accidents. (Hauer, Becker, Lindemann & Beyer, 2006, p. 847-857) This support for further research in this area is also stressed by Hou in proceedings from a long-term care conference (2006) and by Mendelsohn, Connelly, Overend, & Petrella, (2008, p. 747-756) in other words the literature support the idea that this group has been poorly researched with regard to intervention models in safety and fall prevention as the supported answer for such prevention in the past has been restraint.

Another trend in long-term care is that skilled nursing facilities have due to historical fear of maltreatment (present in limited cases) long-term care has transitioned away from nursing home care to more care provision in the home and also in assisted living centers, or intermediate care facilities. This trend has created a shift in the kind of patients who enter long-term care (skilled nursing homes) and their level of care has increased. In other words the most desperate of patients including those with the worst functional and financial burdens are therefore the most likely to end up in the institutional setting. Often home-based caregivers, either a spouse or adult child, rely on institutional care only as a choice of last resort, and this is often reported only after their own health and well being begins to be perceived as degraded by caring for the individual in the home, relevant to supplemented home care services as well. (Ducharme et al. 2007, p. 3-31) Researchers in fact contend that individuals will employ a vast variety of coping mechanisms to attempt to remain independent, and though these mechanisms should be supported in the community, when they are productive and effective rather than destructive but that alternatives should be better, in a number of fundamental ways. (Robichaud & Lamarre, 2002) What this trend of last resort means, according to Clemmitt, is that those with dementia and other functionally debilitating and progressive chronic diseases, i.e. The most vulnerable of populations are those who end up in LTC facilities. (2010, pp. 345-346) Caron, Griffith, & Arcand stress that the importance of caring for dementia patients in particular in an ethical and collaborative manner is fundamental to quality of care. To respond to this growing trend and the needs of staff and family to collaborate regarding care decisions, the long-term care facilities of the future should redirect attention of creating systems and standards for collaborative practice, where family and staff are in constant communication regarding care needs of their loved ones, as their loved ones are not usually in a position to make those decisions independently. (2005, pp. 231-234) Collaborative, family/caregiver care plans need to not only be developed but enforced, with regard to how and what a patient unable to make his or her own decisions receives in the way of care as well as in the way of autonomous decision making power. (Lambert et al., 2005)

Holistic Care

Though this work has briefly touched on the issue of collaborative care, regarding caregivers and family, these structures also need to be expanded to a picture that more broadly develops the idea of holistic care. In general this issue has been dealt with in the literature in the case of specialization, such as follow up care and collaboration between institutions and caregivers from hospital and surgical settings. Yet, the continuity of care issue needs to be addressed in a more formal way. The discussion of the desire of previous care providers, such as hospital staff and physicians having follow up information as well as to influence future care needs to be addressed in the future long-term care setting. The days of LTC being an oasis of its own should end as more and more previous care givers seek to have at least a minimal understanding of the future well being of patients they have treated and families as well as patients tend to seek the same connectivity. Some caregivers are in fact so concerned about this disconnect that they present the idea of creating better outcomes if intermediate care offerings were provided in hospital, rather than in separate LTC facilities. (Raj, Munir, Ball, & Carr, 2007) This call for research on this subject likely has as much to do with the overall disconnect that exists between previous care providers and LTC rehabilitative service provisions as it has to do with the medical community, as well as the public having serious and enduring questions about the quality of care offered in such facilities, i.e. real and fear poor patient outcomes. (Kane, 2001) (Torres et al., 2006)

Reinardy & Kane contend that decisions made about future care are often associated with many factors and autonomy is one of the most important to most. Many often stress the choice of an unregulated assisted living facility, even if they could benefit from more skilled care because they perceive that their privacy as well as their autonomy will be better protected in such as situation. The system of future long-term care must address this issue with regard to autonomy and privacy likely by building on more private room structures and better individualization options for individuals. The days of the stark white institutional flooring and a single hospital bed, arm chair setting may very well be over and for good reasons. Long-term care centers of the future need to integrate the ideation, physical, social and emotional aspects of each cohort, i.e. those who are primarily concerned with rehabilitative care and those who are primarily concerned with privacy and autonomy, to create an environment that would meet the needs of both cohorts, possibly improving physical/medical offerings in assisted living and improving issues of privacy and autonomy in nursing homes. (2003)

Finally, and last but certainly not least LTC facilities of the