At 70, John lives on his own, caring for his personal needs with minimal assistance. He is able to function independently, but he refuses to use air conditioning. A prolonged issue, his family grows concerned that it will negatively impact his health.
Scenarios like this are not uncommon and raise an important ethical question for caregivers. Where is the line between protecting an individual’s autonomy and protecting their health?
Nursing education revolves around not only providing the best possible care, but also creating an environment of respect. Preserving an individual’s autonomy is long established tenet of nursing as is the expectation to do “no harm.”
And so as self-neglect among older adults becomes an increasing issue, the nurses caring for this population find themselves in a grey area.
Self-Neglect
The National Adult Protective Services Association defines self-neglect as “the result of an adult’s inability, due to physical and/or mental impairments or diminished capacity, to perform essential self-care tasks including: providing essential food, clothing, shelter, and medical care; obtaining goods and services necessary to maintain physical health, mental health, emotional well-being and general safety; and/or managing financial affairs.”
Cases of self-neglect in older adults are on the rise. A 2004 survey of Adult Protective Services programs, suggests self-neglect is the most commonly reported type of elder mistreatment in the U.S, according to the National Center on Elder Abuse.
The same survey showed “Adult Protective Services received nearly 85,000 reports of self-neglect from the 21 states that provided information,” as cited by Kristen L. Mauk, PhD, DNP, RN, CRRN, GCNS-BC, GNP-BC, FAAN, professor of Nursing at Valparaiso University, Valparaiso, IN, in the March/April 2011 issue of Rehabilitation Nursing.
Forms of self-neglect can range from lack of hygiene and cleanliness to refusal to visit a doctor or the dentist. As incidences increase nurses will find themselves repeatedly challenged.
“Home care nurses and other caregivers will face situations where the patient may be a competent adult and is simply choosing to live a certain way,” said Mauk. “Interventions must take place when their rights infringe on the rights of others or when they are endangering themselves, but caution and a thorough investigation is imperative.”
“It becomes an ethical dilemma because as nurses our job is to support the autonomy of the older person for as long as possible and allow them to care for themselves as much as they can,” she added. “You have to make an informed decision separate from your personal feelings because you don’t want to be responsible for an individual losing their right to decide how or where they live.”
Assessment is Key
The reasons behind self-neglect are not always easily apparent and so before a nurse decides a change must be made it is important they ask the right questions.
Nurses who suspect or witness self-neglect must determine competency. While legal capacity can only be ruled upon by a court, nurses and other healthcare professionals can use their knowledge and resources to determine if action must be taken.
“As a geriatric nurse practitioner I could recommend whether a person was competent or not,” said Mauk. “I could administer several tests to check their cognitive level to see if they had enough thought process, executive functioning and judgment to make their own decisions.” However, only the court can make a final decision on an individual’s competence or capacity.
When entering a situation where self-neglect is a possibility, nurses must first ask themselves if this is a case of abuse. If it is they are obligated to report it.
However, if it is a case where an older adult is making all of their own decisions and there is a sudden change the nurse must decide if there is an acute issue, such as delirium, which can be treated and hopefully overcome or if it is a case where the individual’s competency is deteriorating.
Some individuals may be making a certain choice simply because it is the only way they have ever known.
For instance, John’s refusal to use air conditioning could stem from growing up without one. “It’s not that he doesn’t want to be cool; he just refuses to get one or turn it on. Does he have the right to do that?” said Mauk. “Well, if he is competent, then yes he does.
“Someone would not have the right to come in and move you or me to a nursing home because we refused air conditioning,” she emphasized. “You can’t do that to an older, competent adult either.”
Decisions must be made on a case by case basis. Every individual is unique and so are the potential reasons behind their state of self-neglect.
“You have to look at every case on its own, but ethically and legally we have an obligation to step in when the person shows signs of not being competent,” said Mauk.
“If the person seems completely competent and they are just choosing not to take a bath, that is a much more difficult situation because you can evaluate, but if you think they are competent then healthcare professionals are limited in how much they can intervene if the person has already made this decision.”
Through dedicated assessment nurses and other healthcare professionals can navigate the various ethical dilemmas that surround self-neglect and do their best to ensure that individuals maintain their autonomy as well as their health and safety.
Preserving Choice
“There will come a point when our ethical duty to support that person’s autonomy is overridden by our duty to save their life, but that is a very difficult call to make,” said Mauk. “So take your time and make a thorough assessment, use every strategy you have.”
“In self-neglect you have to be very careful before you report them because that can set off a chain of events that may be difficult to turn around and then that person could lose their autonomy completely,” she emphasized.
Educating the families of older adults is just as critical. Self-neglect in a loved one can be a frightening experience; a nurse can help ensure that family members do not take away an older adult’s autonomy out of fear or a lack of understanding.
“Many family members don’t realize there are a lot of levels of care,” said Mauk. “So you need to educate them on what options are available in their community and how they can access them as well as what they can afford. Time must be spent with the family.”
“A lot of times I think families feel they must immediately place their parent or grandparent in a nursing home because they don’t know that they have a choice.”
Nurses not only have the power to educate families. They can educate and support one another as well, which is invaluable when faced with a decision that can alter the course of a patient’s life.
“Use all of your resources,” stressed Mauk. “If you need to call a social worker or psychologist don’t hesitate, refer to the team member that fits the situation best.”
“Nurses shouldn’t feel like they have to handle this all on their own.”
Catlin Nalley is editorial assistant at ADVANCE.
