CLINICAL TRIALS AND TRIBULATIONS
Treatment Intervention: Learning Residents’ Rights Penelope Ann Shaw, PhD
I
n 2001, I unexpectedly ended up in an intensive care unit on life support for 4 months because of respiratory failure from an acute episode of Guillain-Barre syndrome. Misdiagnosed and untreated, I was discharged to a respiratory rehabilitation hospital with quadriparesis, a tracheotomy, and a feeding tube, where I spent another year. Since then, I have been in a nursing facility, where I was well cared for; after 4 years my tracheotomy and my feeding tube were successfully removed. For several years after that, I was withdrawn and quiet and did little except read and occasionally use e-mail. Although not old-old, I began a new life as an advocate in 2011 at 68. Now, at 71, I am an active nursing home, elderly adult, and disability advocate in Massachusetts, where I testify at the State House, attend meetings, work with Centers for Medicare and Medicaid Services (CMS), and publish occasionally in long-term care (LTC) journals. How did an aging person like myself make the transition from living inside a facility where I spent most of my time in bed isolated, often bored and lonely, all the while feeling helpless, to this new life? How did I get control, reentering the community and living fully? I suggest that learning my rights as a nursing home resident under the CMS Requirements of Participation is the answer. At our resident council, I was introduced to the CMS regulations. Subsequently, as an advocate, I learned all the CMS residents’ rights well. Over time, I absorbed the following: I had the right to refuse treatment and to be free of unnecessary drugs. I had the right to dignity and privacy. I had the right to reach my highest practicable level of physical, mental, and psychosocial well-being. I had the right to choose activities, schedules, and health care consistent with my interests. I had the right to interact with members of the community inside and outside the facility. I had the right to a variety of nutritious and palatable food. I had the right to self-determination in all aspects of
From the Massachusetts Advocates for Nursing Home Reform, Medford, MA; and Division of Nursing Homes, Centers for Medicare and Medicaid Services, Baltimore, Maryland. Address correspondence to Dr. Penelope Ann Shaw, 1102 Washington Street, Braintree, MA 02184. E-mail: [email protected] DOI: 10.1111/jgs.13100
JAGS 62:2199–2200, 2014 © 2014, Copyright the Author Journal compilation © 2014, The American Geriatrics Society
care and the right to reasonable accommodation of my individual needs and preferences. What did I do with all this information? I empowered and transformed myself through self-advocacy and person-centered individualized care. Taking charge of my rights was a form of coping strategy for the challenges of nursing home life, which can be intimidating and frightening. I was able to discontinue a number of medications I did not need. I arranged to have routine preventive medical screenings, knowing my life would not now be one of decline. I improved the food that I ate, which made me happy. I went directly to staff in my facility who could solve any problem I had. I felt on a more-equal basis with the management of my facility and had the ability to make requests. Medicaid paid for a power chair, and I obtained a paratransit account into which charitable organizations deposited funds so I could afford to take trips. I chose my own medical transportation company. I selected outpatient medical, dental, and laboratory providers. I went into town and integrated myself into my community by using the library, voting in person, shopping, and eating out. After reading an article in the Boston Globe that said the governor was eliminating the nursing home bed-hold program, I became worried that I might lose the facility in which I lived if I were hospitalized. I contacted the president of a group mentioned in the article, which was advocating to retain the program, and was offered the opportunity to become an advocate. I arranged for a schedule that met my needs to do this work. By using my CMS rights as a nursing home resident, I am no longer the passive resident of earlier years. Functionally, I am better; I have my mobility back with my power chair. Mentally, I am stimulated by learning new fields where I have meaningful experiences—how government, democracy, and advocacy work. Reading the LTC journals helps me psychologically to reflect and accept my advancing age through concepts of healthy aging, to choose medical treatments wisely, and to prepare myself with advance directives. I reconnected with my skill set as an academic, rediscovering my identity and my confidence. My advocacy network now includes interesting, socially concerned advocates, journalists, physicians, nurses, lawyers, architects, and government officials. The privilege I have of answering a toll-free helpline for individuals seek-
0002-8614/14/$15.00
2200
SHAW
ing better care in nursing homes makes me feel useful. Mine is the story of a journey from disruption through illness, survival, recovery, and reorganization with a new beginning. Based on my personal experience, I suggest putting the treatment intervention “learning residents’ rights” into the care plans of nursing home residents who could benefit by becoming self-advocates. Helping them regain control over their lives through having a substantive voice in their care and life can improve their healthcare outcomes and well-being.
NOVEMBER 2014–VOL. 62, NO. 11
JAGS
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the author and has determined that the author has no financial or any other kind of personal conflicts with this paper. Author Contributions: The author is the sole contributor to this paper. Sponsor’s Role: None.
Copyright of Journal of the American Geriatrics Society is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Treatment Intervention: Learning Residents’ Rights Penelope Ann Shaw, PhD
I
n 2001, I unexpectedly ended up in an intensive care unit on life support for 4 months because of respiratory failure from an acute episode of Guillain-Barre syndrome. Misdiagnosed and untreated, I was discharged to a respiratory rehabilitation hospital with quadriparesis, a tracheotomy, and a feeding tube, where I spent another year. Since then, I have been in a nursing facility, where I was well cared for; after 4 years my tracheotomy and my feeding tube were successfully removed. For several years after that, I was withdrawn and quiet and did little except read and occasionally use e-mail. Although not old-old, I began a new life as an advocate in 2011 at 68. Now, at 71, I am an active nursing home, elderly adult, and disability advocate in Massachusetts, where I testify at the State House, attend meetings, work with Centers for Medicare and Medicaid Services (CMS), and publish occasionally in long-term care (LTC) journals. How did an aging person like myself make the transition from living inside a facility where I spent most of my time in bed isolated, often bored and lonely, all the while feeling helpless, to this new life? How did I get control, reentering the community and living fully? I suggest that learning my rights as a nursing home resident under the CMS Requirements of Participation is the answer. At our resident council, I was introduced to the CMS regulations. Subsequently, as an advocate, I learned all the CMS residents’ rights well. Over time, I absorbed the following: I had the right to refuse treatment and to be free of unnecessary drugs. I had the right to dignity and privacy. I had the right to reach my highest practicable level of physical, mental, and psychosocial well-being. I had the right to choose activities, schedules, and health care consistent with my interests. I had the right to interact with members of the community inside and outside the facility. I had the right to a variety of nutritious and palatable food. I had the right to self-determination in all aspects of
From the Massachusetts Advocates for Nursing Home Reform, Medford, MA; and Division of Nursing Homes, Centers for Medicare and Medicaid Services, Baltimore, Maryland. Address correspondence to Dr. Penelope Ann Shaw, 1102 Washington Street, Braintree, MA 02184. E-mail: [email protected] DOI: 10.1111/jgs.13100
JAGS 62:2199–2200, 2014 © 2014, Copyright the Author Journal compilation © 2014, The American Geriatrics Society
care and the right to reasonable accommodation of my individual needs and preferences. What did I do with all this information? I empowered and transformed myself through self-advocacy and person-centered individualized care. Taking charge of my rights was a form of coping strategy for the challenges of nursing home life, which can be intimidating and frightening. I was able to discontinue a number of medications I did not need. I arranged to have routine preventive medical screenings, knowing my life would not now be one of decline. I improved the food that I ate, which made me happy. I went directly to staff in my facility who could solve any problem I had. I felt on a more-equal basis with the management of my facility and had the ability to make requests. Medicaid paid for a power chair, and I obtained a paratransit account into which charitable organizations deposited funds so I could afford to take trips. I chose my own medical transportation company. I selected outpatient medical, dental, and laboratory providers. I went into town and integrated myself into my community by using the library, voting in person, shopping, and eating out. After reading an article in the Boston Globe that said the governor was eliminating the nursing home bed-hold program, I became worried that I might lose the facility in which I lived if I were hospitalized. I contacted the president of a group mentioned in the article, which was advocating to retain the program, and was offered the opportunity to become an advocate. I arranged for a schedule that met my needs to do this work. By using my CMS rights as a nursing home resident, I am no longer the passive resident of earlier years. Functionally, I am better; I have my mobility back with my power chair. Mentally, I am stimulated by learning new fields where I have meaningful experiences—how government, democracy, and advocacy work. Reading the LTC journals helps me psychologically to reflect and accept my advancing age through concepts of healthy aging, to choose medical treatments wisely, and to prepare myself with advance directives. I reconnected with my skill set as an academic, rediscovering my identity and my confidence. My advocacy network now includes interesting, socially concerned advocates, journalists, physicians, nurses, lawyers, architects, and government officials. The privilege I have of answering a toll-free helpline for individuals seek-
0002-8614/14/$15.00
2200
SHAW
ing better care in nursing homes makes me feel useful. Mine is the story of a journey from disruption through illness, survival, recovery, and reorganization with a new beginning. Based on my personal experience, I suggest putting the treatment intervention “learning residents’ rights” into the care plans of nursing home residents who could benefit by becoming self-advocates. Helping them regain control over their lives through having a substantive voice in their care and life can improve their healthcare outcomes and well-being.
NOVEMBER 2014–VOL. 62, NO. 11
JAGS
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the author and has determined that the author has no financial or any other kind of personal conflicts with this paper. Author Contributions: The author is the sole contributor to this paper. Sponsor’s Role: None.
Copyright of Journal of the American Geriatrics Society is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
