Long Term And Institutional Care

Long-Term & Institutional Care Table of Contents Author Supplied Abstract…………………………………………………… … .1 Author Supplied Keywords………………………………………………….. 1-2 Overview……………………………………………………………………… … 2 Understanding Long-Term Care……………………………………………. 2-4 Nursing Homes…………………………………………………………......... 4-5 Hospices……………………………………………………………………… 5-6 Applications…………………………………………………………………… ..6-7 Standards of Care……………………………………………………………. 6-7 Conclusion………………………………………………………………………..7-8 Terms & Concepts……………………………………………………………… 8-9 Bibliography…………………………………………………………………… 10-11 Suggested Reading…………………………………………………………… 11

Author Supplied Abstract Long term and institutional care is one of the most important yet one of the most contentious issues in America today. Long term care is provided to persons with chronic health care issues. These can be as broad as a medical condition such as multiple sclerosis to a person with a serious mental health condition (example: paranoid schizophrenia). More recently, many veterans from the Afghan and Iraq wars are also in need of long term care and some have been placed in institutional care. Institutions can vary greatly, they include nursing homes, hospices and other institutional environments. Some of these are run by the private sector, others by the government and there are also faith-based services. The primary difference between the two is that long term care is often a community-based model whereas institutions are a closed environment.

Author Supplied Keywords Activities of Daily Living Alzheimer’s Amyotrophic Lateral Sclerosis Assisted Living Continuing Care Retirement Communities Dementia Faith-Based Services Hospices Licensed Practical Nurse Multiple Sclerosis Nursing Homes Palliative Care Registered Nurse

Retirement Living Communities Subacute Care

Long-Term & Institutional Care Social Issues & Public Policy > Long-Term & Institutional Care

Overview Long-term and institutionalized care is a topic which embraces a wide range of issues; the types of care available, standards of care available, concern for persons who are vulnerable and/or elderly (possible abuse) and the funding required keeping these services functioning appropriately. For some people, any mention of the words hospice and/or palliative care create worrisome images. However, they exist to provide important services in our communities. Yet, not all people who require care want to go into a nursing home and feel they can be taken care of more effectively in their own home. While home care is definitely a viable and important option, one has to take into account the level of care required and how best to provide that. This requires an assessment of the community care services available so that family members do not burn out trying to care for their loved ones. The various options for long-term care require a strict and constant review. It is absolutely vital that the nation’s most vulnerable individuals receive professionally appropriate care. However, there have been concerns both in the past and in the present as to whether or not the highest of professional standards are being met. Understanding Long-Term Care Long-term care is a complex topic because a wide range of people benefit from services that range from children and young adults who require home care services due to a chronic condition or disability, to people who are elderly and require at least some level of care that may be too complicated to provide at home. “Many people with long-term care needs use a combination of family support and formal long-term care and some will use formal care exclusively. Formal long-term care services can include home care, adult day care, assisted living, and nursing home care” (Tumlinson, Woods, & Avalere Health LLC, 2007, p.2). Individuals require long-term care for many reasons but it is a misconception to think that only persons who are elderly require these services. Children who are born with multiple disabilities, people with severe mental health issues (that is, paranoid schizophrenia), young adults who acquire a disabling condition such as multiple sclerosis and seniors all can require some form of long-term care.

The broad range of assistance that constitutes long-term care results in confusion and disagreement about what long-term care is and how it is distinct from medical care. Other examples of long-term care can range from skilled nursing facility care provided post hospitalization to housing arrangements for healthy seniors and special transportation services (Tumlinson et al., 2007, p.1). There is no doubt that most people would rather be in their own environment, but unfortunately it is not always possible. “…many older people with disabilities simply do not have the financial resources to obtain the services they need, either in the community or in long-term care facilities. In some cases, their care options are limited, if available at all” (“From Isolation to Integration,” 2007, p.13). The choice to provide long-term care at home can be a difficult one. It is often driven by a combination of emotional and financial considerations. Many families cannot bear to place a loved one into a nursing home or other care facility. In addition, the quality services are very expensive and many families simply do not have the money. Yet, trying to provide the care at home can often be just as costly. The level of care required is driven by an assessment of ‘Activities of Daily Living.’ The assessment must be provided by a home care professional. “The assessment tool allows the nurse care manager to identify medical, psychological, functional, and social needs of the client. In addition, the home environment, current health care resource utilization, and support systems are evaluated” (Phillips, Smith, & Cournoyer, 2004, p.42). Home care is not always possible even if a family member prefers to stay in their own environment. It is this assessment which determines whether or not a person can be cared for in their own home, which will provide that care, the parameters of care and the standards that must be adhered to. Although it sounds like a simpler option (and less expensive) the reality is that home care is often financially and emotionally difficult on a family. An individual may lose income depending on the amount of time they need to be home (or hiring a home care provider) and the emotional toll can sometimes be extremely taxing on a family. The professionals who work in long-term care facilities are also under a great deal of pressure especially as America’s health care system comes under increasing scrutiny. The training required to work in long-term care is highly specialized. In addition, the providers of these services must develop an infrastructure that supports quality level care. Presently, in America, there is a dire shortage of professionals capable of working in long-term care facilities. The state of many of the country’s long-term care facilities is a reason for concern. […] many providers maintain that inadequate funding makes it difficult for them to upgrade their infrastructures and their care practices. In particular, providers say that they lack the necessary resources to recruit, train and retain quality staff, especially those direct care workers who provide day-to-day care to long-term care consumers. These workers are

in short supply, in large part because their demanding jobs don’t offer adequate salaries, benefits, training or opportunities for advancement (“From Isolation to Integration,” 2007, p.13). An option open to persons with the financial means is that of assisted living. These are private residences in which an individual does not need 24-hour or intensive care but may need a small level of assistance and they prefer not to be dependent on family members. The consumers who live in residences like these range from young adults with some form of paralysis or other disability but are otherwise independent and older adults (with or without disabilities) who also some form of assistance with their daily tasks such as cleaning, grocery shopping, medication management and other activities of daily living. However, these residences are very expensive and Medicaid only offers some form of reimbursement in 41 states. It can cost up to $36,000 a year to live in such a residence (Tumlinson et al., 2007) Another option is Continuing Care Retirement Communities. In these residences there are nurses on staff and assisted living is available but the majorities of the residents are independent and live in their own apartments within the community. Unfortunately, the bottom line in long-term care comes back to finances. Someone must pay the bills and that is usually the state and federal governments. There are, of course, private facilities owned and managed by companies and corporations, but the federal government pays a large portion of long-term care in America. In one year alone (2004), the federal government paid over $183 billion for long-term care (Tumlinson et al., 2007). That may sound like a staggering amount, but considering the population of America is quickly aging, that number is likely to increase a substantial amount. Nursing Homes Nursing homes have evolved a great deal since the 1950’s when standards for care were finally enforced by the Hill-Burton Act. The Act was a necessity since nursing homes actually had their beginnings in the old poorhouses of the 19th century. The poorhouses were the beginnings of institutionalized care and a place to send people who literally had no where else to go (White, 2005). While nursing homes have steadily improved over the last fifty years, it is clear that the term ‘nursing home’ continues to suffer from the social stigma of being a rather gloomy and negative environment. An ongoing problem for nursing homes (as it is for health care in general) is the acute shortage of qualified nurses (Stoil, 2007). Nursing homes are always in competition with home health care services, hospices, hospitals and each other for qualified personnel. This creates a financial problem as well since nurses are in such high demand they can ask for exceptional salaries and benefits (which they deserve). A common misconception is that nursing homes are places for the elderly or other individuals who have become ill as a result of a stroke or other serious condition, and therefore cannot take care of themselves on an independent basis. Nursing conditions

provide treatment for people on a temporary basis as well. One of their functions is to provide a place for recovery after serious injuries such as back and surgeries and/or hip fractures. This is known as subacute care and nursing homes are increasingly serving in this capacity. “This is supported by the fact that the number of nursing homes with specialized subacute units for residents requiring short-term recovery after serious trauma or accident has been increasing in the last 15 years” (Bernstein, et al., 2003, p.55). The majority of the services provided by nursing homes are for people who have extremely high level personal needs. Some of the conditions which can lead people to need long-term care in a nursing home would be multiple sclerosis, amyotrophic lateral sclerosis, dementia and Alzheimer’s. People with debilitating conditions often have a high level of complex needs ranging from assistance with daily tasks to regular physical therapy and constant watch to ensure they do not wander off and endanger themselves. One of the more recent advances in nursing care is in the ways it has become a form of ‘cooperative care’ with home care services. Since it continues to be true that most people would prefer to remain at home as long as they can, home care services are often required. Unfortunately, home health care services and nursing homes became bitter adversaries during the 1980’s when home health care professionals lobbied to convince legislators that Medicare costs would go down if more home health care services were utilized. Unfortunately, their case lost some credibility when certain scandals became public. “A few high-profile cases were used to Illustrate that home healthcare agencies could, and did, bill for services not actually delivered or for poor-quality, neglectful care” (Stoil, 2007, p.12). More recent legislation may be able to end this battle. There has been a push by the Bush administration to think of Medicaid as two programs - “…programs—one to reimburse long-term care, one to reimburse acute care for tow-income Americans—also has the potential to directly affect both types of long-term care providers” (Stoil, 2007, p.12). Hospices Hospices are quality end of life care. Some hospices are actually private institutions that provide palliative (end of life) care and there is also hospice care within nursing homes. Nursing homes also function as a referral service for persons who require hospice/palliative care. These are extremely difficult services to provide and professionals who work in hospices require extensive training to work on the highly sensitive issues related to end of life. Some of the issues include medication use, pain management, end of life counseling, bereavement counseling (for families and partners), coping with dying patients, and the most difficult issue of all which is the choice to end life (by refusing treatment) even though it can be prolonged through technology. The primary distinction between nursing home care and palliative care offered by hospices is that the latter focuses on quality for a person’s end of life, while the former focuses on life-prolonging techniques and technologies. Thus, when a person enters into a hospice or palliative care, they do so with the firm recognition that they are in the final

stages of life and they do not wish to prolong it any further. Some would suggest it is a more ‘natural’ approach but others would state it is merely a ‘different’ approach (Keay & Schonwetter, 1998, p.491). Although hospice care has been recognized for some time as a positive and appropriate environment for persons facing end of life, the fact is that the majority of Americans who die in an institution do so in a nursing home. Despite the rapid growth in the number of hospice patients served and the acceptance of hospice as a legitimate healthcare provider for patients near the end of life, it was estimated that, of 2.4 million Americans who died in 2000, only one of every four was under hospice care at the time of death (Chen, Haley, Robinson, &. Schonwetter, 2003, p.789). The reality of institutional care is that nursing homes (as noted above) are not equipped, nor is their staff sufficiently trained to provide quality end of life care. However, research into hospice care and the reasons why more people decide to enter and/or stay in a nursing home are still unclear. Recently, the National Hospice Organization published guidelines to help determine who is appropriate for hospice care and the parameters of that care. One of the most important criteria is that the individual has been determined to have less than six months to live ( Keay & Schonwetter, 1998). To aid individuals who are elderly and dying, there is the Medicaid Hospice Benefit. While it is limited it provides financial support. For example, persons in a nursing home can receive visits by hospice personnel (provided that the nursing home has a contract with the hospice), the medication and technical equipment necessary to make end of life comfortable for them. Unfortunately, not all nursing homes have a relationship with a hospice and therefore they cannot provide palliative care with the same skill. “When a nursing home resident is identified as having a limited life expectancy, it is appropriate to plan for end-of-life care…Specially trained hospice professionals and volunteers can provide many services that are beyond those usually offered in nursing homes” ( Keay & Schonwetter, 1998, p.492).

Applications Standards of Care In addition to the constant shortage of nurses and other qualified personnel, long term care services must deal with a high level of scrutiny on their standards of care. Since long term care is administered by the state, there is an ongoing concern over the lack of quality in some nursing homes. Research has demonstrated that quality is not uniform across the states. While consumers certainly benefit from information on quality and improvements in nursing homes across the nation, the question is whether or not, in the end, consumers even have a choice as to where they go. “The number of nursing home beds is

tightly controlled in most states in an effort to minimize Medicaid expenditures. Desirable nursing homes have long waiting lists. Most nursing home patients are admitted from hospitals” (White, 2005, p.28). In order to improve and maintain high quality of care in nursing homes and other institutional settings, there is a definite need to address a wide range of issues. A 2007 report on this subject made a broad range of recommendations. These included: reducing the stereotypical images people have of long-term care, modernizing the system of longterm care, attract and hire qualified personnel, improve working conditions, promote career mobility for long-term care workers, introduce technology that can save time and empower consumers in care to be more independent and provide financial incentives for further training and education (“The Long-Term Care Workforce”, 2007). It is absolutely imperative that the highest standards of care be adhered to in long-term care services and institutions. Many people in nursing homes and other services (and even many at home) are vulnerable to the point where they might not even be aware of who they are or their surroundings. Professionals must have the training necessary not only to provide quality care but compassionate care. They must be able to deal with the person and their families, friends and partners. It is often the case that the family is going through a difficult time and the long-term or end of life care being provided is a crucial time in their lives as well. In terms of specific educational standards there are major recommendations that emanated from the same report (as stated above). Some of these include: improve the performance of doctors who serve as medical directors in long-term care services, develop model standards for nursing home administrators, strengthen long-term care nurse competencies in geriatrics, administration, management and supervision and reassess scopes of practice of RNs and LPNs working in long-term care settings (“The Long-Term Care Workforce”, 2007, p.17). Another means to continue the enforcement of high standards and quality of care is consumer involvement. Consumers have a strong, collective voice and the ability to affect legislation. When consumers band together they provide a strong incentive for their elected representatives to listen. This is especially true in an election year. Families, partners and friends of consumers who use these services are the most important voices of all. They are the people legislators need to hear from. Their experiences with the system are absolutely vital to understanding the ways in which the system does or does not work and what can be done to improve the situation.

Conclusion To enter into long-term care is a significant and life-altering decision. It implies that there are important activities of daily living that we can no longer do for ourselves. However, there are some individuals who have been in this situation since childhood. In either situation, the standard of care is absolutely critical. The nation’s most vulnerable people – persons with disabilities, the elderly and people with terminal illnesses are the people

who are in need of long-term care. Whether these services are provided in the home, a nursing home, a hospice or other long-term facility, the persons using these services are extremely vulnerable. Long-term care services are a sensitive issue. There is perhaps no area more sensitive than providing palliative, or end of life services. It is essential that the country continues to press for the highest standards in quality of care and the credentials of the professionals providing this care. Long-term care has evolved a great deal over the past century and especially over the last half century. This evolution has been for the better but the system is still in need of improvement.

Terms & Concepts Activities of Daily Living are the most basic tasks of everyday life and include bathing, eating, dressing, using the toilet, and transferring from one place to another inside the house. ADLs include meal preparation, managing money, managing medications, using the telephone, doing light housework, and shopping for groceries. Alzheimer’s is a neurological disease that is both progressive and fatal. It effects the brain and in particular the person’s memory. Although it has no cure, in some cases, it is becoming manageable to some degree with early diagnosis. It is also known as a form of Dementia. Amyotrophic Lateral Sclerosis is often known as “Lou Gherig’s Disease” because it affected the famous New York Yankee ballplayer of the same name. ALS is a neurodegenerative disease which affects the motor neurons (the nerve cells in the central nervous system that control voluntary muscular control). It generally leaves the muscular system very weak and people who have ALS become wheelchair users. Fortunately, most people with ALS continue to have cognitive functions. Perhaps the most famous person living with ALS is the famous physicist, Dr. Stephen Hawking. Assisted Living is the term used for residences which have emerged since the independent living movement for persons with disabilities began to have an effect in the 1970’s. Assistive living refers to residences where persons live independently but utilize personal care givers with some of their activities of daily living such as shopping and cleaning. People who live in AL residences do not need 24 hour care and do not need the services of a nurse or doctor in their daily lives. Continuing Care Retirement Communities is a community of residents who live together in a complex of units such as apartments, cottages or other residences. There are both independent and group living arrangements and community care (medical or assistive care) is centralized in a building within the complex. There may be shops, dining rooms or other amenities as well. Dementia is a neurological condition that is identified by a progressive decline in a person’s cognitive functions. Although it used to be thought of as a function of aging, doctors and researchers now say this is not true and it is a decline in the brain that is

actually beyond the normal aging process. While Alzheimer’s and Dementia are sometimes thought to be the same thing, they are not. Alzheimer’s is one form of Dementia and there are many other forms of dementia. Dementia can also be a result of another condition such as long-term alcoholism, syphilis and many other diseases. Faith-Based Services are services that are based on a particular religious or spiritual belief and the people within those communities donate to and arrange for the upkeep of the home or institution. Hospices are either private institutions in and of themselves or exist as part of a larger institution to provide quality end of life (palliative) care. Licensed Practical Nurse are lower than a registered nurse and do not undergo the same level of rigorous training. They must work under the supervision of an RN or a licensed physician. Although they are lower than RNs, they are higher than Certified Nursing Assistants. They also work in a wide range of health care settings including hospitals and nursing homes. Multiple Sclerosis is a neurological condition that results when they myelin sheath (the coating around the nerve endings on the spinal cord) begins to deteriorate. This causes wide spread neurological damage and loss of body functions. Nursing Homes is a generic name for a broad range of long-term care services, although they sometimes provide subacute or short-term rehabilitation services. This is usually a place for individuals who require constant care especially with respect to a significant portion of their activities of daily living. Palliative Care is the term for end of life care. Registered Nurse or an RN is an individual who has completed a specific level of training to earn the designation of ‘registered nurse’. They work in a wide range of health care settings including hospitals, nursing homes and hospices. RNs can also be highly specialized such as emergency nursing, pediatric nursing, palliative nursing, psychiatric nursing and many other specializations. They are highly valued in the health care system. Retirement Living Communities this is a very broad term for a wide range of communities for persons in retirement. They can be for persons of a certain age and a certain level of physical functioning. They often have an extensive list of amenities such as pools, clubhouses, golf courses and on-site medical facilities. The residents live in their own independent apartments. Subacute Care is generally considered to be short-term care and/or rehabilitation

Bibliography Bernstein A.B., Hing, E., Moss A. J., Allen K. F., Siller, A.B., & Tiggle R. B. (2003). Health care in America:Trends in utilization. Hyattsville, Maryland: National Center for Health Statistics. 2003.. Retrieved July 17, 2008, from: http://www.cdc.gov/nchs/data/misc/healthcare.pdf Chen, H., Haley, W.E., Robinson, B.E., &. Schonwetter, R.S. (2003). Decisions for hospice care in patients with advanced cancer. Journal of the American Geriatrics Society, 51(6), 789-797. Retrieved July 17, 2008, from EBSCO online database, SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=9849250&site =ehost-live Hanson, L.C., Sengupta, S., & Slubicki, M. (2005). Access to nursing home hospice: Perspectives of nursing home and hospice administrators. Journal of Palliative Medicine, 8(6), 1207-1213. Retrieved July 17, 2008, from EBSCO online database, SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=19120816&sit e=ehost-live Institute for the Future of Aging Services. (2007). The long-term care workforce: Can the crisis be fixed? A Report for the National Commission for Quality LongTerm Care. Retrieved July 17, 2008, from: http://www.qualitylongtermcarecommission.org/pdf/ltc_workforce.pdf Keay, T. J., & Schonwetter, R.S. (1996). Hospice care in the nursing home. American Family Physician, 57(3), 491-496. Retrieved July 17, 2008, from EBSCO online database, SocINDEX with Full Text (no persistent link). National Commission for Quality Long-Term Care. (2007). From isolation to integration. Retrieved July 17, 2008, from: http://www.qualitylongtermcarecommission.org/pdf/Final_Report_NCQLTC_200 71203.pdf Phillips, S.L., Smith, D., Cournoyer, B., & Hillegass, B.E. (2004). Chronic home care: A health plans experience. Annals of Long-Term Care, 12(4), 41-45. Retrieved July 17, 2008, from: http://www.annalsoflongtermcare.com/altc/attachments/1083074887Home%20Care.pdf Stoil, M. (2007). Nursing homes and home care: A shotgun marriage. Nursing Homes: Long Term Care Management, 56(4), 12-14. Retrieved July 17, 2008, from EBSCO online database, SocINDEX with Full Text.

http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=25004187&sit e=ehost-live Tumlinson, A., Woods, S., & Avalere Health LLC. (2007). Long-term care in America: An introduction. Retrieved July 17, 2008, from: http://www.qualitylongtermcarecommission.org/pdf/ltc_america_introduction.pdf White, H. (2008). Promoting quality care in the nursing home. Annals of Long-Term Care, 13(4), 26-33. Retrieved July 17, 2008, from: http://www.annalsoflongtermcare.com/altc/attachments/3999.pdf Gibbs, L.M., & Mosqueda, L. (2004). Confronting elder mistreatment in long-term care. Annals of Long-Term Care, 12(4), 26-33. Retrieved July 17, 2008, from: http://www.annalsoflongtermcare.com/altc/attachments/1083074443Elder%20mistreatment.pdf

Suggested Reading Gaugler, J.E. (2005). Promoting Family Involvement in Long-Term Care Settings A Guide to Programs that Work. Health Professionals Press, Baltimore, Maryland. Kunkel, A., & Wellin, V. (Eds.). (2006). Consumer Voice and Choice in Long-Term Care. Springer Publishing Co., New York, N.Y. Salamon, M.J., & Rosenthal, G. (2003). Home or Nursing Home Making the Right Choices. Springer Publishing Co., New York, N.Y. Wunderlich, G.S., &. Kohler, P.O. (Eds.). (2001). Improving the Quality of Long-Term Care. The National Academies Press, Washington, D.C. Lattanzi-Licht, M., Mahoney, J.J., & Miller, G.W. (1998). The Hospice Choice: In Pursuit of a Peaceful Death. The National Hospice Association, New York, N.Y. Essay by Ilanna Mandel, M.A. Ilanna Mandel is a writer and editor with over seventeen years of experience, specifically in the health and education sectors. Her work has been utilized by corporations, nonprofit organizations and academic institutions. She is a published author with one book and numerous articles to her credit. She received her MA in Education from UC Berkeley where she focused on sociology and education. _______________________________________________________________________ _