Issues That Are Important To Older People With Intellectual Disabilities And Their Families
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Treatment Issues for Nurses of
Older Intellectually Disabled Patients
Your Name
University
April 19, 2010
Medical professionals face a plethora of issues when dealing with patients with intellectual disabilities and their families and sometimes these problems can increase with the age of the patient. Perception of these patients as well as the extent of their disabilities is among the factors which impact the type of care they receive and the means by which it is delivered. Often, medical professionals will have to act as advocates for the intellectually disabled, sometimes even with their own families. This paper will touch on the need for nurses and other medical professionals to act as advocates for the intellectually disabled, but will concentrate specifically on the concepts of self-care and advanced life directives for the older intellectually disabled. This analysis will include the role of nurses in this care and how these patients differ from average older patients.
Defining the Issue
The primary issue with intellectual disability is that like any disability, it can range from mild to severe and most people only consider the most advanced forms of disability when thinking about these patients. According to the United States Centers for Disease Control and Prevention, “Intellectual disability is characterized both by a significantly below-average score on a test of mental ability or intelligence and by limitations in the ability to function in areas of daily life, such as communication, self-care, and getting along in social situations and school activities. Intellectual disability is sometimes referred to as a cognitive disability or mental retardation,” (CDC, 2010).
One of the most important things that nurses and other medical professionals need to understand before considering a career involving the treatment of persons with an intellectual disability is that the disability can range from mild to severe and may be strictly intellectual – that is, involving a patients’ ability to reason or learn – or maybe emotional or social in nature. “Children with intellectual disability can and do learn new skills, but they develop more slowly than children with average intelligence and adaptive skills. There are different degrees of intellectual disability, ranging from mild to profound. A person's level of intellectual disability can be defined by their intelligence quotient (IQ), or by the types and amount of support they need,” (CDC, 2010). Because society has not yet found another way to define emotional and social disabilities, the medical professional needs to be aware that a patient may seem very intellectually advanced, but still face an intellectual disability. In these patients, it is the amount of support that they need which defines the disability. These patients may be unable to control emotions well-enough to hold a job, may have poor impulse control, or may face other limitations due to their disability.
According to the Irish Nursing Board, these patients may be more complex to treat than other patients.
“There are about 26,700 people with intellectual disability of all ages in Ireland and their needs are diverse and sometimes complex. Intellectual disability may range from mild to profound, and individuals may also be physically challenged or have multiple disabilities. Clients may have a physical and/or sensory impairment and some may have behavioural or mental health problems,” (RNID, 2010).
The additional disabilities or impairments that are common in this population include “cerebral palsy, seizure disorders, vision impairment, hearing loss, and attention-deficit/hyperactivity disorder (ADHD). Children with severe intellectual disability are more likely to have additional disabilities than are children with mild Intellectual disability,” (CDC, 2010).
As persons with intellectual abilities age, they face many of the same health conditions of the rest of the populace as well as a slew of others brought on by the underlying conditions which caused their disability, by the societal treatment of those with intellectual disabilities, or by the medications prescribed to address the medical conditions.
“Compared to persons in the general population, most individuals with intellectual disabilities/mental retardation will have similar rates of older age-related health conditions. Including coronary heart disease, type 2 diabetes, some forms of cancer, osteoarthritis, disorders of hearing and vision, and dementia. Risk factors for older age-related health conditions (e.g., obesity, high blood pressure, high cholesterol, lack of exercise, smoking, and alcohol-related concerns) are the same as in the general population,” (AAIDD, 2010, p. 1).
Additionally, research has shown that some specific causes of intellectual disability, such as Down’s syndrome and cerebral palsy, may result in higher incidents of Alzheimer’s disease and chronic pain respectively. “Older persons with long histories of using specific medications (e.g., psychotropic, antiseizure) are also at a higher risk of developing secondary conditions (e.g. tardive dyskinesia, conditions related to being overweight, or osteoporosis),” (AAIDD, 2010).
Complicating the issue of care for older patients with intellectual disabilities is the desire to allow patients as much personal freedom and independence as possible. One of the things that has changed drastically over the last 35 years is the attitude toward the intellectually disabled and their role in determining their own course in life. The Arc is a national organization in the United States dedicated to the prospect of enriching the lives of those with intellectual disabilities rather than shunting them off “to a home” as was done for so many years.
“We work to ensure that people with intellectual and developmental disabilities and their families have the supports they need to live an ordinary, decent American life:
The simple reality is that until the mid-1970s, people with intellectual disabilities were often institutionalized at birth or shortly thereafter and families were given condolences when a child with any of several conditions resulting in intellectual disability, such as Down’s syndrome or cerebral palsy, were born instead of the more typical celebration of a child’s birth. Through the work of various individuals, including Eunice Kennedy Shriver – founder of the Special Olympics, these attitudes have begun to change, slowly. As evidenced by the American media reaction to vice presidential candidate Sarah Palin’s decision not to terminate her pregnancy when she discovered that she was carrying a child with Down’s syndrome, the change has not completely taken hold.
Therefore, medical professionals are faced with the dual role of acting as advocates for the intellectually disabled while still trying to accurately judge which patients should and should not have absolute authority over their own medical care. The next section of this paper will address two specific issues facing older patients, including older patients with intellectual disabilities, and discuss the concerns facing medical professionals related to these matters, specifically self-care for illness and disease and advanced life directives.
Complicated choices
Two of the most difficult issues facing medical professionals and their older patients are the concepts of self-care and advanced life directives. The first is often inadequately monitored and the second is often an issue patients do not wish to consider, but both are important parts of medical care. Self-care, sometimes discussed as compliance with medical directions, can be difficult for older patients for several reasons. This section will address the reasons many older patients fail to adequately participate in their self-management of illness and disease as well as how having an intellectual disability might complicate this matter. Then, the author will address the question of advanced life directives and the issues of intellectually disabled older adults choosing to create advanced life directives.
Self-management of many diseases and conditions is a requirement of medicine today. As medicine evolves into a more holistic approach to a person’s health, we have discovered that the concept of take a pill and then forget it is not a viable approach to many diseases and conditions facing older adults. Everything from diabetes to age-related macular degeneration is potentially impacted by the ability of the patient to self-manage medications, diet and more.
“In spite of the great strides that have been made in the treatment of diabetes in recent years, many patients do not achieve optimal outcomes and still experience devastating complications that result in a decreased length and quality of life. Providers often struggle to give the recommended level of diabetes care within the constraints of a busy office setting. Because our health care system is designed to deliver acute, symptom-driven care, it is poorly configured to effectively treat chronic diseases such as diabetes that require the development of a collaborative daily self-management plan,” (Funnell and Anderson, 2004).
The concept of self-management is that every patient will be actively engaged in and participate in their own care, but the reality is that many patients either do not have sufficient education to comply with self-management instructions or do not have the willpower to do so. Many older patients who are diagnosed with diabetes chose not to alter their eating habits to improve their blood sugar management, perhaps claiming the quality of life will be better if they simply continue eating as they always have. Others never articulate why they chose not to comply with self-management, but speculation exists in some medical arenas that patients are woefully uneducated about the long-term risks of failing to manage their diabetes, including blindness, kidney failure and loss of limbs due to infection.
The other issue may be that patients have simply got information overload regarding what does and does not impact their blood sugar levels. Consider the following from Sciencedaily.com, a website that sounds as if it has some scientific backing. “Herbs and spices are rich in antioxidants, and a new University of Georgia study suggests they are also potent inhibitors of tissue damage and inflammation caused by high levels of blood sugar,” (ScienceDaily, 2008). In addition, the food pyramid as released by the United States Department of Agriculture and purporting to instruct people on good eating habits has recently been revised based on newer scientific evidence (MyPyramid.gov, 2010).
With the shifting focus to official recognition that successful diabetes management lies in the hands of the patient rather than the medical provider, there’s a whole lot of flurry of late about “behavioral issues.” (DiabetesMine, 2005). The issue then that faces nurses attending patients with intellectual disabilities is figuring out whether the patient is capable of maintaining the self-care necessary to prevent future complications from the disease. “Since initially proposed in diabetes, there has been a growing recognition that, although health professionals are experts on diabetes care, patients are the experts on their own lives. This approach recognizes that knowing about an illness is not the same as knowing about a person's life and that, by default, patients are the primary decision-makers in control of the daily self-management of their diabetes,” (Funnell &Anderson, 2004). Because the process requires the patient to be able to make a determination regarding the self-adjustment of their medication, the nurse attending this patient must be willing to make a judgment regarding the ability of the patient to make an informed decision and to act on it.
When a patient with an intellectual disability is diagnosed with a disease or condition that requires self-management, the nurse will need to be part of the team that determines how to educate the patient for the self-care plan and how the plan is managed. One option would be for more frequent monitoring of the patient. By offering additional in office monitoring, the medical staff might be able to allow the patient the same autonomy of care that a non-disabled patient would be given. The problem arises in the sort of separate but equal treatment standard which must develop. In essence, because of the special needs of the intellectually disabled patient, a higher standard of care is necessitated. This may create an ethical conflict for the medical staff as the patient has a right to the same choices as any other patient but the medical staff has continuing concerns regarding the safety of self-management. While diabetes is likely to be the most frequent condition where this issue will arise, it is certainly not the only one. And, advocates for the intellectually disabled would likely argue that older patients who are not classified as intellectually disabled may also face difficulty in self-management.
Self-management can be an issue for all older adults as they are forced to make choices between healthy lifestyle choices and unhealthy choices based on their familiarity, expense and availability. Many older adults face senility or forgetfulness which may impact their ability to properly self-manage complex medical issues. For the intellectually disabled, the problems can be increase in part due to the lack of resources. “Older adults with intellectual disabilities/mental retardation and other developmental disabilities have many of the same age-related concerns as older adults. However, they typically have less income, fewer opportunities to make choices, and less knowledge of potential options than do older adults in the general population,” (AAIDD, 2010).
Another common issue facing the older population that is complicated by a patient’s intellectual ability or lack thereof is the consideration of an advanced life directive. An advanced directive, ranging from a living will to durable power of attorney to a do not resuscitate order, requires the patient to engage in higher forms of reasoning to determine quality of life issues regarding advanced medical treatment. “An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions (if you are in a coma, for example). If you are admitted to the hospital, the hospital staff will probably talk to you about advance directives,” (FamilyDoctor.org, 2010). The problem with this sort of decision-making is that it is exactly the type of reasoning that the intellectually disabled may be physically unqualified to make and yet it is such a completely personal decision that asking someone to make the decision on another person’s behalf is literally a life-saving or life-ending decision.
Generally speaking, in the area of advanced directives, the intellectually disabled had been forbidden from making their own decisions. “There is a legal presumption that all persons have the capacity to make their own health care decisions unless they are declared incompetent through a legal process. However, adults with intellectual disability “have historically been excluded from various spheres of decision-making about their lives, on the presumption that they are incapable of making informed decisions,” (U.S. Department of Health and Human Services, 2010).
Though they were actually addressing the issue of diabetes care, one pair of researchers explained it this way,
“Empowerment is not a technique or strategy, but rather a vision that guides each encounter with our patients and requires that both professionals and patients adopt new roles. The role of patients is to be well-informed active partners or collaborators in their own care. The role of health professionals is to help patients make informed decisions to achieve their goals and overcome barriers through education, appropriate care recommendations, expert advice, and support. Professionals need to give up feeling responsible for their patients and become responsible to them,” (Funnell & Anderson, 2004).
If medical professionals have the goal of empowering the intellectually disabled and for the intellectually disabled to have the same rights to choices regarding their own lives that other people are given, then the question of an advanced directive must be left to the patient himself, rather than some paternalistic agency or family member given the duty of “looking out” for the patient. When this action becomes reality, the onus is generally on the nursing staff to provide adequate information and advice for the patient.
The Role of Nurses for the Intellectually Disabled Older Patient
Nurses for patients with an intellectual disability have an even more advanced role in patient care than nurses in traditional medicine. While all nurses play an important role in patient education, the role of the nurse in patient education for older patients with an intellectual disability is significantly increased. Looking again to the Irish concepts, “Registered Nurses Intellectual Disability (RNID) develop the ordinary life skills we all take for granted so that persons with an intellectual disability can live their lives as fully and as independently as possible,” (RNID, 2010). In almost any clinical setting, a nurse is expected to take part in patient evaluations and patient education. Nurses who work with the intellectually disabled also add advocates to that role. The nurse “works with individual clients, families, children and adults, in the clients' homes, residential homes, respite units, day centres and their schools or workplaces. Nurses work with clients, families, and carers to promote the clients' emotional, physical and social well being, whilst respecting and advocating for their rights and dignity,” (RNID, 2010). In this case, the nurse may have to not only develop a self-management plan for the patient which involved the instruction for the self-management, but may also be required to create a plan for implementing the program. These plans may be as simple as creating medication alarms to remind higher functioning patients to take their medications to more advance support systems for patients less able to alter their medications according to dietary intake, exercise or other factors which impact blood sugar levels.
Nurses at this level become social workers as well as nurses, seeing to the whole person rather than just the physical health of the patient.
“They can, however, remain active by using available community services. Community inclusion models include (a) links with aging services, such as senior centers, companion programs, and adult day care; (b) church-run or other recreational programs in the general community; and (c) later-life planning educational programs. Many community services agencies are developing individualized options, including preferences for working part-time. The success of these options depends on the follow-up formal and informal supports available in the community. To be more responsive to individuals' needs and preferences, agencies rely on volunteers, variable reimbursement rates, external funds, and flexible schedules,” (RNID, 2010)
In this way, nurses become the support staff for the patient, taking a much more active role in the patient’s continued health.
When discussing the concept of the advanced directive, the nurse may need to find new ways of discussing the concepts with the patient and making certain that they are understood. Ultimately, the amount of understanding that the patient is capable of should be the determining factor regarding the need to bring others into the patient’s health care decision-making process.
Conclusions
Nursing that is focused on or is involved in a practice which includes intellectual disabled patients can be very rewarding, perhaps even more so than in other populations because the population has been so isolated from mainstream society until recent decades. However, any nurse considering entering this field must also be aware of and prepared for the additional demands that will be placed on his time because of the special needs of this population. The nurse may wish to seek additional training in social work and must be tapped into the resources of the community so that she can offer assistance to help the patient to live the highest quality of life possible.
REFERENCES
American Association of Intellectual and Development Disabilities, (2010) “Aging: Older Adults and their Caregivers”, Retrieved April 15, 2010, from http://www.aaidd.org/content_181.cfm.
Diabetes Mines (2005) “Breaking Ground with ‘The Self-Managed Disease’,” Retrieved April 14, 2010, from http://www.diabetesmine.com/2005/06/breaking_ground.html
FamilyDoctor.org (2010) “Advanced Directives and Do Not Resuscitate Orders” Retrieved April 15, 2010, from http://familydoctor.org/online/famdocen/home/pat-advocacy/endoflife/003.html.
Funnell, Martha M. and Anderson, Robert M. (2004, July) American Diabetes Association, “Empowerment and Self-Management of Diabetes” Retrieved April 15, 2010, from http://clinical.diabetesjournals.org/content/22/3/123.full
Gates, Bob. (2006) Care Planning and Delivery in Intellectual Disability Nursing. Wiley-Blackwell, USA.
Irish Nursing Board (2010) “A Day in the Life: Intellectual Disability Nurse” Retrieved April 12, 2010, from http://www.nursingboard.ie/en/day_life-intel_disability_nurse.aspx
ScienceDaily.com (2008) “Spices May Protect Against Consequences of High Blood Sugar,” Retrieved April 19, 2010 from http://www.sciencedaily.com/releases/2008/08/080805153830.htm
The Arc of the United States (2010) “About Us” Retrieved April 13, 2010, from http://www.thearc.org/NetCommunity/Page.aspx?pid=1386
The Arc of the United States (2010) “Core Values” Retrieved April 13, 2010, from http://www.thearc.org/NetCommunity/Page.aspx?&pid=268&srcid=1386
U.S. Depart of Agriculture (2010) “My Pyramid”, Retrieved April 19, 2010, from mypyramid.gov.
U.S. Centers for Disease Control and Prevention (2010) “Intellectual Disability”, Retrieved April 12, 2010, from http://www.cdc.gov/ncbddd/dd/ddmr.htm.
U.S. Department of Health and Human Services (2007) “Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities,” Retrieved April 14, 2010, from http://aspe.hhs.gov/daltcp/reports/2007/adacp.htm.
Older Intellectually Disabled Patients
Your Name
University
April 19, 2010
Medical professionals face a plethora of issues when dealing with patients with intellectual disabilities and their families and sometimes these problems can increase with the age of the patient. Perception of these patients as well as the extent of their disabilities is among the factors which impact the type of care they receive and the means by which it is delivered. Often, medical professionals will have to act as advocates for the intellectually disabled, sometimes even with their own families. This paper will touch on the need for nurses and other medical professionals to act as advocates for the intellectually disabled, but will concentrate specifically on the concepts of self-care and advanced life directives for the older intellectually disabled. This analysis will include the role of nurses in this care and how these patients differ from average older patients.
Defining the Issue
The primary issue with intellectual disability is that like any disability, it can range from mild to severe and most people only consider the most advanced forms of disability when thinking about these patients. According to the United States Centers for Disease Control and Prevention, “Intellectual disability is characterized both by a significantly below-average score on a test of mental ability or intelligence and by limitations in the ability to function in areas of daily life, such as communication, self-care, and getting along in social situations and school activities. Intellectual disability is sometimes referred to as a cognitive disability or mental retardation,” (CDC, 2010).
One of the most important things that nurses and other medical professionals need to understand before considering a career involving the treatment of persons with an intellectual disability is that the disability can range from mild to severe and may be strictly intellectual – that is, involving a patients’ ability to reason or learn – or maybe emotional or social in nature. “Children with intellectual disability can and do learn new skills, but they develop more slowly than children with average intelligence and adaptive skills. There are different degrees of intellectual disability, ranging from mild to profound. A person's level of intellectual disability can be defined by their intelligence quotient (IQ), or by the types and amount of support they need,” (CDC, 2010). Because society has not yet found another way to define emotional and social disabilities, the medical professional needs to be aware that a patient may seem very intellectually advanced, but still face an intellectual disability. In these patients, it is the amount of support that they need which defines the disability. These patients may be unable to control emotions well-enough to hold a job, may have poor impulse control, or may face other limitations due to their disability.
According to the Irish Nursing Board, these patients may be more complex to treat than other patients.
“There are about 26,700 people with intellectual disability of all ages in Ireland and their needs are diverse and sometimes complex. Intellectual disability may range from mild to profound, and individuals may also be physically challenged or have multiple disabilities. Clients may have a physical and/or sensory impairment and some may have behavioural or mental health problems,” (RNID, 2010).
The additional disabilities or impairments that are common in this population include “cerebral palsy, seizure disorders, vision impairment, hearing loss, and attention-deficit/hyperactivity disorder (ADHD). Children with severe intellectual disability are more likely to have additional disabilities than are children with mild Intellectual disability,” (CDC, 2010).
As persons with intellectual abilities age, they face many of the same health conditions of the rest of the populace as well as a slew of others brought on by the underlying conditions which caused their disability, by the societal treatment of those with intellectual disabilities, or by the medications prescribed to address the medical conditions.
“Compared to persons in the general population, most individuals with intellectual disabilities/mental retardation will have similar rates of older age-related health conditions. Including coronary heart disease, type 2 diabetes, some forms of cancer, osteoarthritis, disorders of hearing and vision, and dementia. Risk factors for older age-related health conditions (e.g., obesity, high blood pressure, high cholesterol, lack of exercise, smoking, and alcohol-related concerns) are the same as in the general population,” (AAIDD, 2010, p. 1).
Additionally, research has shown that some specific causes of intellectual disability, such as Down’s syndrome and cerebral palsy, may result in higher incidents of Alzheimer’s disease and chronic pain respectively. “Older persons with long histories of using specific medications (e.g., psychotropic, antiseizure) are also at a higher risk of developing secondary conditions (e.g. tardive dyskinesia, conditions related to being overweight, or osteoporosis),” (AAIDD, 2010).
Complicating the issue of care for older patients with intellectual disabilities is the desire to allow patients as much personal freedom and independence as possible. One of the things that has changed drastically over the last 35 years is the attitude toward the intellectually disabled and their role in determining their own course in life. The Arc is a national organization in the United States dedicated to the prospect of enriching the lives of those with intellectual disabilities rather than shunting them off “to a home” as was done for so many years.
“We work to ensure that people with intellectual and developmental disabilities and their families have the supports they need to live an ordinary, decent American life:
The simple reality is that until the mid-1970s, people with intellectual disabilities were often institutionalized at birth or shortly thereafter and families were given condolences when a child with any of several conditions resulting in intellectual disability, such as Down’s syndrome or cerebral palsy, were born instead of the more typical celebration of a child’s birth. Through the work of various individuals, including Eunice Kennedy Shriver – founder of the Special Olympics, these attitudes have begun to change, slowly. As evidenced by the American media reaction to vice presidential candidate Sarah Palin’s decision not to terminate her pregnancy when she discovered that she was carrying a child with Down’s syndrome, the change has not completely taken hold.
Therefore, medical professionals are faced with the dual role of acting as advocates for the intellectually disabled while still trying to accurately judge which patients should and should not have absolute authority over their own medical care. The next section of this paper will address two specific issues facing older patients, including older patients with intellectual disabilities, and discuss the concerns facing medical professionals related to these matters, specifically self-care for illness and disease and advanced life directives.
Complicated choices
Two of the most difficult issues facing medical professionals and their older patients are the concepts of self-care and advanced life directives. The first is often inadequately monitored and the second is often an issue patients do not wish to consider, but both are important parts of medical care. Self-care, sometimes discussed as compliance with medical directions, can be difficult for older patients for several reasons. This section will address the reasons many older patients fail to adequately participate in their self-management of illness and disease as well as how having an intellectual disability might complicate this matter. Then, the author will address the question of advanced life directives and the issues of intellectually disabled older adults choosing to create advanced life directives.
Self-management of many diseases and conditions is a requirement of medicine today. As medicine evolves into a more holistic approach to a person’s health, we have discovered that the concept of take a pill and then forget it is not a viable approach to many diseases and conditions facing older adults. Everything from diabetes to age-related macular degeneration is potentially impacted by the ability of the patient to self-manage medications, diet and more.
“In spite of the great strides that have been made in the treatment of diabetes in recent years, many patients do not achieve optimal outcomes and still experience devastating complications that result in a decreased length and quality of life. Providers often struggle to give the recommended level of diabetes care within the constraints of a busy office setting. Because our health care system is designed to deliver acute, symptom-driven care, it is poorly configured to effectively treat chronic diseases such as diabetes that require the development of a collaborative daily self-management plan,” (Funnell and Anderson, 2004).
The concept of self-management is that every patient will be actively engaged in and participate in their own care, but the reality is that many patients either do not have sufficient education to comply with self-management instructions or do not have the willpower to do so. Many older patients who are diagnosed with diabetes chose not to alter their eating habits to improve their blood sugar management, perhaps claiming the quality of life will be better if they simply continue eating as they always have. Others never articulate why they chose not to comply with self-management, but speculation exists in some medical arenas that patients are woefully uneducated about the long-term risks of failing to manage their diabetes, including blindness, kidney failure and loss of limbs due to infection.
The other issue may be that patients have simply got information overload regarding what does and does not impact their blood sugar levels. Consider the following from Sciencedaily.com, a website that sounds as if it has some scientific backing. “Herbs and spices are rich in antioxidants, and a new University of Georgia study suggests they are also potent inhibitors of tissue damage and inflammation caused by high levels of blood sugar,” (ScienceDaily, 2008). In addition, the food pyramid as released by the United States Department of Agriculture and purporting to instruct people on good eating habits has recently been revised based on newer scientific evidence (MyPyramid.gov, 2010).
With the shifting focus to official recognition that successful diabetes management lies in the hands of the patient rather than the medical provider, there’s a whole lot of flurry of late about “behavioral issues.” (DiabetesMine, 2005). The issue then that faces nurses attending patients with intellectual disabilities is figuring out whether the patient is capable of maintaining the self-care necessary to prevent future complications from the disease. “Since initially proposed in diabetes, there has been a growing recognition that, although health professionals are experts on diabetes care, patients are the experts on their own lives. This approach recognizes that knowing about an illness is not the same as knowing about a person's life and that, by default, patients are the primary decision-makers in control of the daily self-management of their diabetes,” (Funnell &Anderson, 2004). Because the process requires the patient to be able to make a determination regarding the self-adjustment of their medication, the nurse attending this patient must be willing to make a judgment regarding the ability of the patient to make an informed decision and to act on it.
When a patient with an intellectual disability is diagnosed with a disease or condition that requires self-management, the nurse will need to be part of the team that determines how to educate the patient for the self-care plan and how the plan is managed. One option would be for more frequent monitoring of the patient. By offering additional in office monitoring, the medical staff might be able to allow the patient the same autonomy of care that a non-disabled patient would be given. The problem arises in the sort of separate but equal treatment standard which must develop. In essence, because of the special needs of the intellectually disabled patient, a higher standard of care is necessitated. This may create an ethical conflict for the medical staff as the patient has a right to the same choices as any other patient but the medical staff has continuing concerns regarding the safety of self-management. While diabetes is likely to be the most frequent condition where this issue will arise, it is certainly not the only one. And, advocates for the intellectually disabled would likely argue that older patients who are not classified as intellectually disabled may also face difficulty in self-management.
Self-management can be an issue for all older adults as they are forced to make choices between healthy lifestyle choices and unhealthy choices based on their familiarity, expense and availability. Many older adults face senility or forgetfulness which may impact their ability to properly self-manage complex medical issues. For the intellectually disabled, the problems can be increase in part due to the lack of resources. “Older adults with intellectual disabilities/mental retardation and other developmental disabilities have many of the same age-related concerns as older adults. However, they typically have less income, fewer opportunities to make choices, and less knowledge of potential options than do older adults in the general population,” (AAIDD, 2010).
Another common issue facing the older population that is complicated by a patient’s intellectual ability or lack thereof is the consideration of an advanced life directive. An advanced directive, ranging from a living will to durable power of attorney to a do not resuscitate order, requires the patient to engage in higher forms of reasoning to determine quality of life issues regarding advanced medical treatment. “An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions (if you are in a coma, for example). If you are admitted to the hospital, the hospital staff will probably talk to you about advance directives,” (FamilyDoctor.org, 2010). The problem with this sort of decision-making is that it is exactly the type of reasoning that the intellectually disabled may be physically unqualified to make and yet it is such a completely personal decision that asking someone to make the decision on another person’s behalf is literally a life-saving or life-ending decision.
Generally speaking, in the area of advanced directives, the intellectually disabled had been forbidden from making their own decisions. “There is a legal presumption that all persons have the capacity to make their own health care decisions unless they are declared incompetent through a legal process. However, adults with intellectual disability “have historically been excluded from various spheres of decision-making about their lives, on the presumption that they are incapable of making informed decisions,” (U.S. Department of Health and Human Services, 2010).
Though they were actually addressing the issue of diabetes care, one pair of researchers explained it this way,
“Empowerment is not a technique or strategy, but rather a vision that guides each encounter with our patients and requires that both professionals and patients adopt new roles. The role of patients is to be well-informed active partners or collaborators in their own care. The role of health professionals is to help patients make informed decisions to achieve their goals and overcome barriers through education, appropriate care recommendations, expert advice, and support. Professionals need to give up feeling responsible for their patients and become responsible to them,” (Funnell & Anderson, 2004).
If medical professionals have the goal of empowering the intellectually disabled and for the intellectually disabled to have the same rights to choices regarding their own lives that other people are given, then the question of an advanced directive must be left to the patient himself, rather than some paternalistic agency or family member given the duty of “looking out” for the patient. When this action becomes reality, the onus is generally on the nursing staff to provide adequate information and advice for the patient.
The Role of Nurses for the Intellectually Disabled Older Patient
Nurses for patients with an intellectual disability have an even more advanced role in patient care than nurses in traditional medicine. While all nurses play an important role in patient education, the role of the nurse in patient education for older patients with an intellectual disability is significantly increased. Looking again to the Irish concepts, “Registered Nurses Intellectual Disability (RNID) develop the ordinary life skills we all take for granted so that persons with an intellectual disability can live their lives as fully and as independently as possible,” (RNID, 2010). In almost any clinical setting, a nurse is expected to take part in patient evaluations and patient education. Nurses who work with the intellectually disabled also add advocates to that role. The nurse “works with individual clients, families, children and adults, in the clients' homes, residential homes, respite units, day centres and their schools or workplaces. Nurses work with clients, families, and carers to promote the clients' emotional, physical and social well being, whilst respecting and advocating for their rights and dignity,” (RNID, 2010). In this case, the nurse may have to not only develop a self-management plan for the patient which involved the instruction for the self-management, but may also be required to create a plan for implementing the program. These plans may be as simple as creating medication alarms to remind higher functioning patients to take their medications to more advance support systems for patients less able to alter their medications according to dietary intake, exercise or other factors which impact blood sugar levels.
Nurses at this level become social workers as well as nurses, seeing to the whole person rather than just the physical health of the patient.
“They can, however, remain active by using available community services. Community inclusion models include (a) links with aging services, such as senior centers, companion programs, and adult day care; (b) church-run or other recreational programs in the general community; and (c) later-life planning educational programs. Many community services agencies are developing individualized options, including preferences for working part-time. The success of these options depends on the follow-up formal and informal supports available in the community. To be more responsive to individuals' needs and preferences, agencies rely on volunteers, variable reimbursement rates, external funds, and flexible schedules,” (RNID, 2010)
In this way, nurses become the support staff for the patient, taking a much more active role in the patient’s continued health.
When discussing the concept of the advanced directive, the nurse may need to find new ways of discussing the concepts with the patient and making certain that they are understood. Ultimately, the amount of understanding that the patient is capable of should be the determining factor regarding the need to bring others into the patient’s health care decision-making process.
Conclusions
Nursing that is focused on or is involved in a practice which includes intellectual disabled patients can be very rewarding, perhaps even more so than in other populations because the population has been so isolated from mainstream society until recent decades. However, any nurse considering entering this field must also be aware of and prepared for the additional demands that will be placed on his time because of the special needs of this population. The nurse may wish to seek additional training in social work and must be tapped into the resources of the community so that she can offer assistance to help the patient to live the highest quality of life possible.
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