Nurses defending the autonomy of the elderly at the end of life

qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil.

Results:

nurses deal with the elderly’s autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team.

Final considerations:

the elderly’s autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on “Living Wills” Health Care Directives and principles of palliative care must be encouraged.

Descriptors:
Nursing; Personal Autonomy; Hospice Care; Aged Rights; Chronic Ddisease; Hospitalization

Groups	Participants	Inclusion criteria	Exclusion criteria	Generating question
1^st Sample Group	Ten nurses	Having employment relationship with the institution and minimum experience of six months in medical clinic wards.	Being away from work for any reason during data collection. Acting in exclusively administrative positions.	What do you understand by the elderly’s autonomy at the end of life?
2^nd Sample Group	Eight doctors, being a clinical responsible and seven medical residents
3^rd Sample Group	15 nursing technicians

Associação Brasileira de Enfermagem SGA Norte Quadra 603 Conj. "B" - Av. L2 Norte 70830-102 Brasília, DF, Brasil, Tel.: (55 61) 3226-0653, Fax: (55 61) 3225-4473 - Brasília - DF - Brazil
E-mail: reben@abennacional.org.br

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[1] Corresponding Author: Marcelle Miranda da Silva. E-mail: marcellemsufrj@gmail.com

Subcategory 1: Interacting with the family to defend the elderly’s autonomy
Raw data	Main conceptual codes
The main thing is the family oriented, participatory, who understands what is happening. Sometimes you can promote the elderly’s autonomy, but come the children who do not agree and want you to do everything. (M8) In communication with the family, we try to call those who are closest to a very open conversation; we do not lie or omit things. (M5) You have to see how the family feels at the moment. If it is very hopeful, we have to slow down. (M2) Often, the family itself is a barrier because the elderly person is able to go to the bathroom, take the bath, but the family wants to bathe in the bed. (T5)	- Establishing a relationship of trust; - Encouraging family participation; - Speaking with the family based on the veracity of the information; - Evaluating what family members know about the elderly’s health status and what they want to know; - Facing difficulties in the relationship with family members.
Subcategory 2: Interacting with the elderly autonomy to defend its autonomy
Raw data	Main conceptual codes
A good deed comes from caring, listening. Sometimes the patient does not want anything, but knowing how to listen to what he has to tell you is an essential care for him [...].We have to respect the patient’s decision, speaking his true condition, listening to his complaints. Dialogue is essential, as it favors the elderly’s autonomy. (E4) I face the elderly’s autonomy as relative because it depends on the level of consciousness and the state it is. But, in my view, he who must decide what he wants. (E8) It is necessary to give the patient the option to participate in the decisions about his life, but if it is not clear to him what is happening and the options, he will not be able to express what he wants. (E3)	- Defending the elderly’s autonomy; - Dialoging with the elderly; - Understanding the elderly’s desires and their reasons; - Assessing the elderly’s level of consciousness and their pathological condition; - Relativizing the elderly’s autonomy from their condition; - Creating conditions for the elderly to participate in decision-making.
Subcategory 3: Teamwork
Raw data	Main conceptual codes
I talk to the doctor that the patient commented that he no longer wants the treatment, that he wants to surrender. Faced with this, the doctor asks for an opinion for a psychologist to talk to him and confirm this position. (E5) Through dialogue, the team will work well; and the view on the case is broadened. (E1) With the multidisciplinary team, we have to first find out what they think, because they live with us more than we do. I see the patient only on duty, but the nurse is with the patient all the time. So they talk whether the patient is understanding or not. (M5) Working almost always with the same team facilitates the sharing of decision-making with nursing. (M8) We discussed in round, we reaffirm in the passage of duty that, for that patient, it is only measures of comfort and we inform the nursing and the social service after the decision has been made. (M6) Sometimes on duty there is a nutritionist who understands palliative care, supports autonomy, and gives a little more comfort to the patient. (E8) The elderly’s autonomy will be easier if he has the opportunity to receive the visit of his doctor, who follows him up for a long time, because he knows more about the patient than we do. (M7)	- Subsidizing teamwork from sharing information; - Dialoging with the other team professionals; - Sharing the decision-making process; - Centralizing in the doctor the decision-making process; - Seeking expert advice’s opinion.
Subcategory 4: Recognizing the nurse’s leadership in defending the elderly’s autonomy
The nurse has more closeness to them than other professionals. Many things that the elderly do not talk to the doctor they talk to the nurse. (M2) I always ask the patient if he has informed himself what the doctor is giving him and most of the time he says he does not. (E2) I introduce myself by name, to be a reference for him as nurse on duty. Everything that will be performed, I communicate to him on the proposal to be made like, for example, a peripheral puncture. If he replies that he does not want to, I ask why to understand his arguments, for he has his reasons. (E1) When something makes it impossible for us to promote the elderly’s autonomy, at first we have the nurse, our immediate boss, to whom we pass on the situation that we do not agree and that we think has to have an intervention. So the nurse is a reference in certain situations. (T1) Most nurses, unfortunately, accept much of what is placed, perhaps because of work overload or because they stop doing what can be done. (T6)	- Having greater proximity to the elderly during hospitalization; - Having greater openness to dialogue with the elderly and opportunity to understand their needs; - Potentializing actions in defense of the elderly’s autonomy; - Establishing a relationship of trust; - Being a reference for the team and for the patient; - Experiencing challenges to defend the elderly’s autonomy.