v17n3a02

RESEARCH ARTICLES

 

Perception of nursing staff on the implementation of palliative care

 

Tania Cristina Schäfer VasquesI; Valeria Lerch LunardiII; Rosemary Silva da SilveiraIII; Giovana Calcagno GomesIV; Wilson Danilo Lunardi SonV; Aline Campelo PintanelVI

INurse, Master's in Nursing, Nursing Graduate Program at the Federal University of Rio Grande, Member of the Center for Studies and Research in Nursing and Health Care, Rio Grande, Rio Grande do Sul, Brazil.E-mail: taniacristina9@yahoo.com.br
IINurse, PhD in Nursing, Professor, School of Nursing, Federal University of Rio Grande, Researcher for the National Council of Scientific and Technological Development. Leader of the Center for Studies and Research in Nursing and Health Care, Rio Grande, Rio Grande do Sul, Brazil E-mail:vlunardi@terra.com.br
IIINurse, PhD in Nursing, Professor, School of Nursing, Federal University of Rio Grande, Researcher for the National Council of Scientific and Technological Development, Leader of the Center for Studies and Research in Nursing and Health Care, Rio Grande, Rio Grande do Sul, Brazil, E-mail: Anacarol@mikrus.com.br
IVNurse, PhD in Nursing, Professor, School of Nursing, Federal University of Rio Grande, Leader of the Group of Studies and Research in Nursing and Child and Adolescent Health, Rio Grande, Rio Grande do Sul, Brazil, E-mail: giovanacalcagno@furg.br
VNurse, Phd in Nursing, Associate Professor IV of the School of Nursing at the Federal University of Rio Grande, Researcher of the National Council of Scientific and Technological Development, Rio Grande, Rio Grande do Sul, Brazil, E-mail: lunardifilho@terra.com.br
VINurse, Phd in Nursing, School of Nursing at the Federal University of Rio Grande, A Member of the Group of Studies and Research in Nursing and Child and Adolescent Health, Rio Grande, Rio Grande do Sul, Brazil, E-mail: acpintanel@hotmail.com
VIIextracted from the dissertation Perception of palliative care and its implementation. Graduate Nursing Program at the Federal University of Rio Grande, Rio Grande do Sul, Brazil.

 


ABSTRACT

This study aimed at learning how nursing workers who care for patients with no prospect of cure and life-threatened realize the implementation of palliative care in their daily work. Qualitative research was conducted with 23 nursing workers of a public hospital in southern Brazil, during 2011, through a semi structured interview. A discursive textual analysis was used, emerging two categories: - implementation of palliative care: whose decision?, highlighting the importance of decision making, regarding the care of these patients, involving the nursing staff, patients and their families; - implementation of palliative care in daily work, focusing on the daily care to these patients. It is necessary to train and advise workers who care for patients who require palliative care, ensuring better life quality conditions for the workers, patients and their families to receive a more specialized care in this finite phase of life.

Keywords: Palliative care; therapeutic futility; nursing ethics.


 

INTRODUCTION

Speaking on diagnosing a disease with no prospect of healing and life-threatening commonly refers to the sensation of death VII. The finiteness is still regarded as one of the vital events that can inspire several thoughts directed by emotions, in the person who is dying, being us who are in their surroundings, and physical and emotional distancing can occur with this individual, causing them to greater suffering and solitude at this particular moment of his life.

Thus, the need for a more specific and humanized care for patients outside the possibility of cure and at the risk of life, the World Health Organization (WHO), in 1990, defined palliative care (PC) as the active and total care for patients whose disease no longer responds to curative treatments1. In 2002, restated this definition, identifying PC as an approach that promotes the quality of life of patients and their families, who face diseases that threaten the life, through the prevention and relief of suffering2.

In recent times, there is a greater awareness, on the part of health professionals, especially nurses, as well as the need to implement the PC philosophy in care for terminally ill patients. In spite of the number of services in PC they are scarce, many professionals adopt its principles alone, humanizing their care and, at the same time, benefiting patients in their dying process with a greater quality of life3.

Thus, considering the aforementioned, this study aimed to understand how nursing workers, who take care of patients with these characteristics, perceive the implementation of PC in their daily work.

 

LITERATURE REVIEW

The Principles in PC were defined by the WHO, and can be summarized as: - to promote the relief of pain and other uncomfortable symptoms for the patient; - affirm life, considering the process of dying as normal or natural, without rushing or postponing death; - integrating psychological and spiritual aspects of patient care, offering support to live as actively as possible until death; - providing support family during illness, seeking to meet their needs and those of patients, including counseling in the mourning process, if indicated; - improving the quality of life and may positively influence the course of disease and applies at the beginning with other therapies intended for prolonging life, and include investigations needed to better understand and manage distressing clinical complications2 .

Still, the relationship between the professional and patient, being together with the person in discomfort and seeking ways to help them, becomes a rewarding experience. To devote to this care, the worker may suffer, when experiencing the suffering of others, however, they can learn to prioritize what is essential in life, respecting even the human condition, so fragile and finite, adding the fact that to share with other team members, skills and unique experiences4.

For units that are practicing PC, it is recommended that this care is performed by a multidisciplinary team, who work together, allowing a broader view of the patient's situation and better care planning. Thus, it often involves doctors, nurses, and nursing technicians, psychologists, physiotherapists, nutritionists and a spiritual counselor, including the family as well5.

However, according to the Brazilian Association of Palliative Care (ABCP), in 2011, Brazil had only 64 local services for pain and PC; of these, 43 in the Southeast Region; the Southern and Northeast regions, with 9 services in each and 2 services in each of the other regions of the country6. In spite of these initiatives, in Brazil, there are still barriers to be transposed for its consolidation, such as the difficult access to care services, failures in the guidelines of health policies, deficiencies in vocational training and the ignorance on this theme in the general population7.

 

METHODOLOGY:

This is an exploratory, qualitative, which aims to create opportunities greater understanding on the implementation of the PC as well as the reconstruction of existing knowledge8.

This study was developed in a public hospital with 183 beds, located in the extreme south of Brazil. Considering that this institution does not have a PC unit, the data were collected in a unit medical clinic (UCM), which has 49 beds, made available to care for a significant number of chronic patients and many without the prospect of cure and life-threatening, arising from diagnosis of human immunodeficiency virus (HIV), cancer, heart diseases, endocrine diseases, lung diseases, among others. In it acts a nursing team comprised of 8 nurses, 33 mid-level workers (17 auxiliary nurses and 16 nursing technicians), as well as substitutes..

The data collection occurred in 2011, through semi-structured interviews, which were recorded with an average duration of 25 minutes, guided by a script. Initially, we addressed a characterization of the subject, then, care for patients with no chance of cure and life-threatening, their needs, decision making, implementation of care and the worker's feelings. The interviewees who expressed ignorance of the meaning of PC, were presented a concept of PC 2, soon after proceeded to the interview.

The subjects of this study were 23 nursing workers, i.e. , 6 nurses, 6 nursing technicians and 11 nursing assistants, identified as: nurse (N), nursing assistant (NA) and nursing technician (NT), followed by a number of ordered interviews. As inclusion criteria, were selected employees who acted in the UCM for a period exceeding six months and signed an informed consent form (ICF).

The subjects had the following characteristics: their ages ranged from 28 to 64 years, with a training time between 5 and 30 years and the length of time working at the unit between 2 and 19 years. All respondents stated that they had not received any previous guidance regarding the PC topic.

The data were submitted to discursive textual analysis 8, through rigorous and thorough reading, occurring its deconstruction, highlighting the analysis units. Then, have established relations between the analysis units, grouped by similarity, resulting in two categories: The implementation of palliative care: whose decision?; Implementation of palliative care in daily work. As the last step of the analysis, there was a description and interpretation of meanings obtained from the text, through the constructed meanings 8.

The study was approved by the Research Ethics Committee in Healthcare (protocol No.: 43/2011).

 

RESULTS AND DISCUSSION

Implementation of palliative care: whose decision?

The PC are still an unknown specialty in society in general and by many workers interviewed; however, after the presentation of a definition for PC, and what was prioritized in a care, many acknowledged that they performed some of care recommended in PC, despite their ignorance of the title.

Thus, nursing workers perceive that PC are implemented in their daily work, especially, from a prior daily assessment of these patients by the nurse, which represents an important tool in the identification of the needs of patients with a diagnoses without the prospect of cure. Here is an excerpt:

[...] it is on a daily basis and visiting each patient to know, because they are specific needs, so each patient has their own peculiarities... I can evaluate chatting all day with him, seeing what we can do to improve... Ahh! At least, having a little bit of quality within the hospital environment and that we do within the visits even ... (E1).

This daily attention makes the professionals involved in care able to understand the complex dimensions of the human being: listen, perceive and understand, recognizing as essential in order to identify their real needs, thereby plan palliative actions9.

The progression of the disease, with the resulting impairment of the physical condition of the patient justifies the need for a systematic and continuous evaluation, with a comprehensive and integral vision to early on identify possible hazards and complex disabilities that may affect the exercise of their autonomy to thus able to provide better choices about their participative care. Especially in units that do not have a PC service implemented, the nurse as the global health care director10 can and should use the daily visit to subsidize it, beside the ill with a diagnosis without the prospect of cure and their relatives, as well as decision-making related to care. The effectiveness of PC underlies also the degree of participation assisted human being and their family in the decision-making process11.

Nursing care to patients outside the possibility of cure and life-threatening should also cover assistance to their families. These experienced a time permeated by fear, uncertainty, anguish and uncertainty and, in spite of their needs, they are not always properly supported in relation to their weaknesses and instructed about the care to be provided, which are borne exclusively by nursing workers. The next item is one of the reports:

[...] there are families that interact... There are others who do not [...], they are kind of shocked, as well ... [...] I respect always, [...] if they want to participate I let them... If they don't want to, I will go there and do it ... I try to always adapt [...] (AE8).

In the view of some of these workers, it is important to observe the autonomy of the patient and family members, which implies enabling them to overcome the sense of dependence, by participating in the care actions and decision-making about the care that will be performed. It is what exposes the subject:

[...] Patients and their family members participate in care ... Generally, you have the sensitivity to not bypass the family ... I Respect [...] (AE3)

[...] they have a family... They and ten with them (patient). And they give their opinion ... I think this is even valid... occurs when any request about schedules preference procedures, I usually follow them. (AE9)

The nursing staff can contribute, by promoting PC actions, empowering patients and their family members to exercise of their autonomy and, when possible, allowing family members to provide the most intimate care, such as personal hygiene, oral, diaper changing and mobilization of patients in bed, among others. The fact that the family members assume the implementation of the PC does not exempt them from encountering troubles and conflicts, and can, in the long term, weaken them, causing damage to both their health and their quality of life12, thus making difficult, their participation in the process of caring for the patient13. Therefore, it is also essential to provide support to family members, furnishing them with information about what may occur in the course of the disease, and empowering them to participate in decision making about the implementation of PC necessary, seeking respect their beliefs and individual values14. It should be noted, moreover, that the nursing workers need to know the real needs of families, in order to help them establish solutions to problems that arise over the progressive course of the disease13.

Therefore, the nursing worker has an important role, while respecting and encouraging such participation, attentive to the experience and the preparation of this family for the care. In this close relationship, it is desirable to have a conversation open, reinforcing the benefits of participation in decisions regarding the care to be provided15. However, in the perception of the respondents, usually the doctors seem to assume, without the participation of the patient, their family members and other professionals on the team, the decision-making process about the treatment and care provided to the patient outside of possibility of cure and with risk of life16, as other subjects have said:

[...] it is one thing that the doctor provides. (AE5)

[...] There is a medical team discussion and they pass it on to the nurses and they pass the decision to the technicians. (TE7)

[...] It would be very nice if this decision were shared with the nursing team. (E9)

Some nursing professionals, usually nurses, questioning behaviors that are not considered as beneficial to patients:

[...] I ask myself why we will have that behavior ... Sometimes; the questioning is accepted and discussed with the preceptor ... because everyone works with residents... Then, the conduct many times, is not the residents. It is the preceptor's. (E21)

The implementation of PC requires that health professionals recognize their responsibility for articulation of relations in the triad of professionals, family and patient, to ensure the exercise towards patient autonomy outside their status without a prospect for a cure17. As this autonomy is not respected, the professional, with a patronizing attitude, may be trying to protect the patient and family knowledge of prognosis, denying, however, the individualization of care, the patient's condition as a subject, reflecting on obstacles to the operation of the PC.

A frank and open dialog with the patient and their family it is necessary, in order to get to know their preferences and, thus, for them, as well as the work in team, so as to make its service more appropriate, encouraging the making of important decisions related to the treatment, the possibility of the PC indication, preventing futile therapy for the patients16.

Regarding the patient-formal caregiver 17, should be careful to base an ethic of respect and consideration to permanently be the object and simultaneously subject of care. However, the responsibility for the decision about the best approach to be adopted, from the knowledge of the diagnosis, it may trigger a further suffering for these patients and their families, with a possible reduction in their quality of life, despite their status as subjects being assured. In relation to this aspect, the nurse has sought affirm their space, while trying to focus on the production of scientific knowledge related to the care, in order to increase the professional autonomy of the nurse and the nursing team and provide the necessary support for the systematization of nursing care and the actions in daily work18, especially those relating to decisions that go beyond the dimension of nursing work.

 

Implementation of palliative care in daily work

The nursing staff has mastered the art of caring, under the vision of a broad understanding of life, glimpsing the development, independently or as a team, of activities for health promotion and protection as well as disease prevention and recovery19. However, when it is no longer possible to cure a patient, who evolves into a dying process, experiencing a direct and uninterrupted, pain, suffering, despair, incomprehension, irritability and other feelings19, the nursing professionals need to be prepared to face the situation of imminent death, to establish actions and strategies to minimize the suffering and provide death with dignity20.

It was noticed that the workers with greater experience in the UCM seem to have more ease to evidence the needs of patients without a cure, since this recognition requires a watchful eye. Thus, they emphasize that it is essential to implement the performance of care, especially related to:

[...] pain control [...] (E1).

The physical pain represents one of the greatest fears and difficulties faced by the patient outside the possibility of cure and life-threatened21. In spite of the pain control being a priority in basic PC nursing care, it is relevant that the workers redeem their sensitivity and show that they available to evidence needs when faced with the suffering of patients outside the possibility of cure and life-threatened, covering, in addition to pain control, physical, mental, social and spiritual aspects. The CP also has, as fundamental, relief of pain and other symptoms and not primarily the possible shortening or prolongation of the dying process22.

It is essential to the involvement of a multidisciplinary team, which meets the needs of analgesic be in PC, with the aim to humanize the maximum time of death22. It is essential that such health professionals know how to control pain in patients with advanced cancer, for example, that react against myths and concepts, mainly, on the drugs available, keeping up to date23, which requires permanent professional qualification.

It highlights the palliative sedation option, authorized by the patient or their family, which reduces the patient's level of consciousness, with the aim of relieving symptoms resulting from underlying disease in its advanced stage24. The palliative surgery may occur, also, with the intention to provide relief of pain and other symptoms, or to facilitate other forms of treatment, without the intention of reaching a definitive cure25.

It is worth considering that in PC, one must use other non-pharmacological measures relevant to the maintenance of the quality of life of the patient, as therapeutic massages, changes in position, to prevent possible pressure sores. It therefore emphasizes the use of the administration of parenteral drugs analgesics subcutaneously, hipodermoclise, causing a less suffering to these patients, whose veins commonly are collapsed, thin, fragile, breaking easily26.

The workers indicated the implementation of other basic nursing care also identified as PC, such as:

Hygiene [...] (TE4)

Position change [...] (E1).

Comfort. (AE3).

Therefore, PC involves the minimization of symptoms, with absence of healing function, looking for the preservation of the quality of life of the individual, focusing on the promotion of your comfort, hygiene, cutaneous and mucosal integrity and analgesia, observing, also, the need for reduction of pain27. In the case of PC, these actions are prioritized, carefully conducted, to identify diseases more complex physical integrity of the most vulnerable. With the progression of the disease, the patient becomes progressively more dependent, and may require that care such as bathing, hygiene for the scalp, oral and intimate, transfer and mobilization in the bed and environmental hygiene, among others, by viewing their physical comfort and the preservation of their dignity28.

It should also be emphasized that one of the greatest gratifications, when working with terminal patients, and helping them feel more comfortable, without equipment or major technologies, using only the mind, heart and hands3, which was observed in the following statement:

[...] Attention ... stop to touch a patient ... (TE7)

Therefore, the enhancement of emotional care can promote comfort and well-being of both the patient and the family, providing them with the minimization of suffering in the final moments of life of the assisted human being29. Thus, stopping to touch the patient, therapeutically, can provide more comfort to the patient and his family, that they may feel lonely and insecure, in the course of coping with the diagnosis of a disease without the prospect of cure.

It should be pointed out that some interviewees, although they consider the use of PC important, they expressed difficulties in their daily work to implement such care:

[...] we stay with many patients. It is not possible to stand by their side caring ... (AE5)

[...] because we have many patients to care for ... (AE2).

Thus, the nursing staff refers their overload, both physical and emotional, emphasizing the quantitative aspects of the work, such as working hours, excessive patients under their responsibility and the health status of each patient. Still, they highlight the qualitative question, linked to direct contact with suffering and death as contributors to their exhaustion and poor professional performance30.

 

CONCLUSION

In this study, it was evident that the importance of daily nurse visits to patients outside the prospect of cure, and life-threated, in order to know and assess the evolution of their needs physical and emotional, social and spiritual, so as to plan and implement an attentive and specific care. In order to, it was necessary to develop, on the part of nursing staff, an attentive listening, in order to help these patients and their relatives in the finite process.

The joint decision about the care to be implemented in case with a prospect of cure was highlighted, with emphasis on greater physician openness for discussion with the nursing staff, patients and their families. Thus, with a higher power of the nurse and all nursing staff as well as patients and their families, resulting in greater autonomy to address the decision making about the care of these patients, who will also benefit.

The implementation of PC is performed by some workers, especially those related to care in pain, hygiene and comfort, despite the lack of this terminology, which demonstrates the continuing need for training, especially from the problematization of the difficulties experienced in the terminally ill in the work environment, such as the recommended by continuing education. It is important to address a more attention to the family in this process of death, offering care, support and guidance for its strengthening in the care of their sick family members.

The main limitation of this study stems from the data collection has not been performed in a unit of PC, by its lack both the institution and in the city. It is recommended, therefore, that the healthcare workers, especially those in nursing, continuously caring for patients without a prospect of cure, are recognized and to invest in their training for the care of terminally ill patients and in PC, so as to assure a greater quality of life at work, as well as, a higher quality of care offered to patients and their families, in this finite phase of life.

 

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Received: 08.10.2012
Approved:
24.01.2013