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REHABILITATION IN PALLIATIVE CARE

REHABILITACIÓN EN CUIDADOS PALIATIVOS

ABSTRACT:

The objective of this study was to describe the activities and effects of functional rehabilitation in patients receiving palliative care. It is an integrative review, in which LILACS, BDENF, Coleciona SUS (Brazil) and PUBMED were used, 20 articles were selected, subsequently characterized as having designs of medium and low impact, more than half ranked with evidence levels II, III and IV and with samples not always consistent with the research designs. However, the results revealed the potential of rehabilitation to improve the functional status, quality of life and symptoms like pain and anxiety in this population, through interventions that are many times undervalued in palliative care. The conclusion is that rehabilitation is a feasible strategy to combat functional decline and improve the quality of life of patients in palliative care.

DESCRIPTORS:
Palliative care; Activities of daily living; Rehabilitation

RESUMEN

El objetivo de este estudio fue describir las actividades y los efectos de la rehabilitación funcional en pacientes que reciben cuidados paliativos. Es una revisión integradora que utiliza las bases de datos LILACS, BDENF, Coleciona SUS (Brasil) y PUBMED. Se seleccionaron 20 artículos, después caracterizados con diseños de mediano y bajo impacto, y más de la mitad se clasificó con niveles de evidencia II, III, IV y con muestras no siempre consistentes con los diseños de investigación. Todavía, los resultados revelaran el potencial de la rehabilitación para mejorar el estado funcional, la calidad de vida y los síntomas como dolor y ansiedad en esta población, a través de intervenciones muchas veces infravaloradas en cuidados paliativos. Se concluye que la rehabilitación es una estrategia viable para combatir el deterioro funcional y mejorar la calidad de vida de los pacientes en cuidados paliativos.

DESCRIPTORES:
Cuidados paliativos; Actividades cotidianas; Rehabilitación

RESUMO:

O objetivo deste estudo foi descrever as atividades e os efeitos da reabilitação funcional em pacientes que recebem cuidados paliativos. Trata-se de uma revisão integrativa que utilizou as bases de dados LILACS, BDENF, Coleciona SUS (Brasil) e PubMed. Foram selecionados 20 artigos, posteriormente caracterizados como de desenhos de médio e baixo impacto, sendo que mais da metade foi classificada com níveis de evidência II, III e IV e amostras nem sempre condizentes com os desenhos de pesquisa. Porém, os resultados revelaram o potencial da reabilitação para melhoria do estado funcional, da qualidade de vida e sintomas como dor e ansiedade nessa população, por meio de intervenções muitas vezes subvalorizadas em cuidados paliativos. Conclui-se que a reabilitação é uma estratégia viável para combater o declínio funcional e melhorar a qualidade de vida de pacientes em cuidados paliativos.

DESCRITORES:
Cuidados paliativos; Atividades cotidianas; Reabilitação

INTRODUCTION

According to the World Health Organization (WHO), palliative care (PC) is "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".1:14 Rehabilitation interventions are an important strategy for this approach, as the functional decline results in losses in the performance of daily living activities and in the ability to attend to health needs.

The loss of functionality accompanies the trajectory of most life-threatening illnesses, in addition to the profound physical, emotional and spiritual changes that patients experience as from the diagnosis and until they die. This condition is always heterogeneous, varying with the disease and its progression, with age, comorbidities, the therapeutics used and the physical, emotional, spiritual and social condition of each patient. Therefore, research and investigation are fundamental to attend to the needs of these people and their families.22. Jeyasingam L, Agar M, Soares M, Plummer J, Currow DC. A prospective study of unmet activity of daily living needs in palliative care inpatients. Aust Occup Ther J. 2008 Dec; 55(4):266-72.-33. Stabenau HF, Morrison LJ, Gahbauer EA, Leo-Summers L, Allore HG, Gill TM. Functional trajectories in the year before hospice. Ann Fam Med. 2015;13(1):33-40.

It is essential for health professionals to be qualified to offer specialized and structured support to PC patients and their families, attempting to profoundly understand the impact the disease produces. Among all potential sources of suffering for the patients, the loss of autonomy can be considered one of the most important.44. Andrade SMG. A perda de autonomia em doentes paliativos com cancro do pulmão [dissertação]. Lisboa (PT): Universidade de Lisboa; 2009. The caregiver's burden, the institutionalization and the greater use of health system resources are direct consequences of the functional decline and the lack of effective interventions to promote autonomy of patients in PC.55. Javier NS, Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med. 2011; 14(5):638-48.

The concept of rehabilitation in PC has been progressively established in the academic context and in health care services. One desire PC patients frequently express is to remain physically independent until the end of their life.22. Jeyasingam L, Agar M, Soares M, Plummer J, Currow DC. A prospective study of unmet activity of daily living needs in palliative care inpatients. Aust Occup Ther J. 2008 Dec; 55(4):266-72.,55. Javier NS, Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med. 2011; 14(5):638-48. Executing the activities of daily living and maintaining mobility are areas for intervention that result in significant gains in terms of quality of life. The effect of rehabilitation interventions can be expanded beyond the physical dimension, like beneficial changes in the family dynamics for example, through the reduction in the caregivers and families' burden. Appropriate knowledge on rehabilitation is fundamental to deliver integral and comprehensive care to patients with incurable diseases.55. Javier NS, Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med. 2011; 14(5):638-48.

Thus, the objective in this study was to describe the activities and effects of functional rehabilitation in PC patients, through an integrative literature review.

METHOD

An integrative review was undertaken, a review modality that uses a comprehensive method, which permits the analysis of studies with different quantitative or qualitative research designs and experimental and non-experimental approaches.66. Monteiro DR, Kruse MHL, Almeida MA. Avaliação do instrumento Edmonton Symptom Assessment System em cuidados paliativos: revisão integrativa. Rev Gaúcha Enferm. 2010; 31(4):785-93 The investigation was developed in six phases: identification of the problem, literature review, ranking of the studies, analysis of the studies, interpretation of the results and synthesis of the review findings .77. Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005; 52(5):546-53.-88. Pompeo DA, Rossi LA, Galvão CM. Revisão integrativa: etapa inicial do processo de validação de diagnóstico de enfermagem. Acta Paul Enferm. 2009; 22(4):434-8.

The guiding question was: what are the results of functional rehabilitation in adult palliative care patients? To answer the question, the PICO strategy was used, in which the population (P) consisted of adult palliative care patients, the intervention (I) or independent variable of interest was the functional rehabilitation, the comparison (C) or dependent variable was the functional status and the outcomes (O) were the effects of the rehabilitation.99. Hastings C, Fisher CA. Searching for proof: Creating and using an actionable PICO question. Nurs Manage. 2014; 45(8):9-12.

The search for the articles was undertaken in the databases Latin-American and Caribbean Health Sciences Literature (LILACS), Nursing Database (BDENF) and Coleciona SUS (Brazil), through the research portal of the Virtual Health Library (BVS), and the National Library of Medicine (PubMed). Two researchers selected the articles independently. In case of disagreement, a joint and exhaustive reanalysis of the respective studies permitted reaching a consensus in the composition of the final sample.

The descriptors used in the databases, in Portuguese, English and Spanish, were: Rehabilitation, Palliative Care, Activities of Daily Living, Disability and Recovery of Function, according to the Medical Subject Heading (MeSH) terminology of the National Library of Medicine and the Health Sciences Descriptors (DeCS) of the Virtual Health Library (BVS). The data were collected between July and November 2014.

The criteria for inclusion in the study were: articles published in the last five years, in which the rehabilitation interventions and their outcomes were assessed in adult PC patients; with the abstract and full text available online; written in English, Portuguese or Spanish. Studies involving patients with cognitive problems and whose content did not respond to the guiding question in this study were excluded. The search strategy used and the respective outcomes are displayed in table 1.

Table 1
Results of literature search in the databases. São Paulo, SP, Brazil, 2015

The studies were selected in accordance with the PRISMA (Preferred Reporting Items for Systematic Review and Meta-Analyses) criteria.1010. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009; 151(4):264-9. The results obtained in each phase have been summarized in the flowchart in figure 1.

Figure 1
Flowchart of selected studies. São Paulo, SP, Brazil, 2015

Out of 597 articles found in the database PubMed, 20 were selected after the exclusion of duplicated articles and the reading of the abstracts and full texts. In LILACS, eight articles were located, but later discarded because they did not comply with the inclusion criteria. Two articles were selected through citations but excluded for the same reason. Thus, the study sample consisted of 20 articles.

To collect the data was utilized an instrument submitted to content validation by two experts,88. Pompeo DA, Rossi LA, Galvão CM. Revisão integrativa: etapa inicial do processo de validação de diagnóstico de enfermagem. Acta Paul Enferm. 2009; 22(4):434-8. who were college teachers experienced in reviews, whose suggestions were adopted. The tool includes: identification of the article, journal and authors, method used, interventions and conclusions. Next, the analysis started to identify the functional rehabilitation outcomes of PC patients. Particularly the conclusions and implications of the functional rehabilitation interventions were analyzed in detail. The evidence level was classified according to the National Cancer Institute: Levels of Evidence for Supportive and Palliative Care Studies (PDQ(r)).1111. National Cancer Institute. Levels of Evidence for Supportive an Palliative Care Studies [Internet]. Bethesda: NCI; 2010 [cited 2014 Jul 01]. Available from: http://www.cancer.gov/cancertopics/pdq/levels-evidence-supportive-care/HealthProfessional
http://www.cancer.gov/cancertopics/pdq/l...

Two tables were produced to present the results, the first displaying the characteristics of the studies and the second showing the type of intervention used and the conclusion. In the discussion, the results of the selected studies were integrated to build a general concept of rehabilitation in PC.

RESULTS

Table 2, about the study characteristics, displays information on the authors, country of origin of the research, place and year of study, methodological design and sample size.

Table 2
Characterization of scientific production on rehabilitation in palliative care in adults. São Paulo, SP, Brazil, 2015

As for the countries of origin, 70% of the studies were developed in European countries, and the remainder in the United States of America (USA). Concerning the sample size, the samples were small and not always in accordance with the research designs, ranging between one and 572 participants. Most studies were developed at clinics with multiprofessional teams. Table 3 displays the rehabilitation interventions, the outcomes of their use and the classification of the studies in terms of evidence level.

Table 3
Outcomes of studies and classification of evidence level according to National Cancer Institute: Levels of Evidence for Supportive and Palliative Care Studies (PDQ(r)). São Paulo, SP, Brazil, 2015

Most studies were classified under evidence levels II (30%), III (30%) and IV (5%), while level I was attributed to 35% of the articles. Many interventions involved multiprofessional teams. The articles adopted different perspectives, although all referred to functional rehabilitation and its potential benefits for palliative care patients. The feasibility of rehabilitation in patients beyond possibilities of cure was proven in most cases, with rare exceptions.

DISCUSSION

Many PC patients experience functional decline, which certainly causes repercussions in different aspects of their lives. Interferences in the ability to execute daily tasks increase the probability of psychological unrest. The functionality loss and the fear of turning into a burden for the caregiver and the family are frequent concerns that are continuously mentioned among the reasons to desire the end of life.3131. Jordhoy MS, Inger Ringdal G, Helbostad JL, Oldervoll L, Loge JH, Kaasa S. Assessing physical functioning: a systematic review of quality of life measures developed for use in palliative care. Palliat Med. 2007; 21(8):673-82.

The objective of rehabilitation in PC is to improve the patients' quality of life, helping them to achieve their full physical, psychological, social, vocational and cognitive potential with as little dependence as possible, independently of the life expectancy. To achieve this objective, many elements are highlighted in the studies, such as: setting realistic goals, multidisciplinary teamwork, ability to react rapidly to emerging needs, among others.55. Javier NS, Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med. 2011; 14(5):638-48.,2121. Jones L, Fitzgerald G, Leurent B, Round J, Eades J, Davis S, et al. Rehabilitation in advanced, progressive, recurrent cancer: a randomized controlled trial. J Pain Symptom Manage. 2013; 46(3):315-25.e3.,3232. Economou D. Palliative care needs of cancer survivors. Semin Oncol Nurs. 2014; 30(4):262-7.

Despite the increased attention to quality of life in PC, the role of rehabilitation continues to arouse doubts as, at first sight, its objectives may seem incompatible with PC. Terminal patients are frequently forced to make important decisions about their health, future, family and possessions and the rehabilitation interventions may seem inappropriate in view of the circumstances.3333. Eyigor S, Akdeniz S. Is exercise ignored in palliative cancer patients? World J Clin Oncol. 2014; 5(3):554-9.

Nevertheless, an increasing number of studies guarantees that rehabilitation works towards many unsatisfied needs of the PC patients and, although it does not eliminate the damage the diseases cause, it can certainly mitigate them.2222. Kasven-Gonzalez N, Souverain R, Miale S. Improving quality of life through rehabilitation in palliative care: case report. Palliat Support Care. 2010; 8(3):359-69.,3131. Jordhoy MS, Inger Ringdal G, Helbostad JL, Oldervoll L, Loge JH, Kaasa S. Assessing physical functioning: a systematic review of quality of life measures developed for use in palliative care. Palliat Med. 2007; 21(8):673-82.

32. Economou D. Palliative care needs of cancer survivors. Semin Oncol Nurs. 2014; 30(4):262-7.

33. Eyigor S, Akdeniz S. Is exercise ignored in palliative cancer patients? World J Clin Oncol. 2014; 5(3):554-9.
-3434. Eyigor S. Physical activity and rehabilitation programs should be recommended on palliative care for patients with cancer. J Palliat Med. 2010; 13(10):1183-4. In addition, it seems to unite patients and their families through a common objective, that is, to act against the functional decline so that it is not experienced in a solitary manner, isolated from the family and the health team.

The studies analyzed evidenced the benefits of functional rehabilitation: reduction of symptoms like pain, dyspnea and fatigue; improvement of nutritional and emotional status; muscle strengthening and increased range of movements, balance and feeling of control over the body, resulting in a better quality of life for the patients studied.3535. Barawid E, Covarrubias N, Tribuzio B, Liao S. The benefits of rehabilitation for palliative care patients. Am J Hosp Palliat Care. 2015; 32(1):34-43.

36. Corsonello A, Scarlata S, Pedone C, Bustacchini S, Fusco S, Zito A, et al. Treating COPD in older and oldest old patients. Curr Pharm Des. 2015; 21(13):1672-89.
-3737. Osborne TR, Ramsenthaler C, Wolf-Linder S, Schey SA, Siegert RJ, Edmonds PM, et al. Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life. BMC Cancer. 2014; 14(1):496. It can also promote the reduction of stress and positively influence the patient's perceived independence.2222. Kasven-Gonzalez N, Souverain R, Miale S. Improving quality of life through rehabilitation in palliative care: case report. Palliat Support Care. 2010; 8(3):359-69. Effects of rehabilitation related to the psychosocial sphere, such as anxiety, stress and depression, were also found, as well as the patients' desire to feel physically better, even when they know that death is approaching.3535. Barawid E, Covarrubias N, Tribuzio B, Liao S. The benefits of rehabilitation for palliative care patients. Am J Hosp Palliat Care. 2015; 32(1):34-43.

The importance of environments with a calm atmosphere was highlighted, with relaxation and confidence to enhance the effects of the interventions. Like in the other situations related to therapeutic interventions, a strong bond with the health professional is also fundamental.38

The decisions about treatment in PC are often motivated by quality of life aspects and, on different occasions, the patient's view differs from the professionals' perspective. A recent qualitative study revealed that the symptom load alone does not necessarily affect the quality of life. In fact, it is its relation with the so-called fundamental dimensions of quality of life that does this. One of these dimensions is activity and participation.3737. Osborne TR, Ramsenthaler C, Wolf-Linder S, Schey SA, Siegert RJ, Edmonds PM, et al. Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life. BMC Cancer. 2014; 14(1):496. The rehabilitation offers many potential contributions to improvements in this domain. Nevertheless, to enhance the probability of success, the health professional needs to take into account the patients' limitations and change the program whenever necessary.2222. Kasven-Gonzalez N, Souverain R, Miale S. Improving quality of life through rehabilitation in palliative care: case report. Palliat Support Care. 2010; 8(3):359-69.

Rehabilitation interventions still are not considered very relevant in PC and could certainly be used in a more frequent and effective manner. Research on rehabilitation in PC remains limited and further studies in the area are needed, with higher evidence levels. Studies are needed that lead to reliable results, such as randomized clinical trials. One of the difficulties mentioned to accomplish such research is the difficulty to establish control groups, as excluding PC patients from potential benefits is a complex task given the short time of life they have left.1414. Clemens KE, Jaspers B, Klaschik E, Nieland P. Evaluation of the clinical effectiveness of physiotherapeutic management of lymphoedema in palliative care patients. Jpn J Clin Oncol. 2010; 40(11):1068-72.

CONCLUSION

Functional decline is a common condition among PC patients. Maintaining the ability to execute activities of daily living is an important objective in this type of care, given its positive implications in the family structure, relationships, work and social life. The studies analyzed demonstrated the role of rehabilitation to achieve these activities and structure the daily life, resulting in a better quality of life.

Reducing the suffering is one of the main targets in PC delivery and rehabilitation is one of the strategies with the greatest potential to achieve this. Some of the potential benefits of rehabilitation include improved mobility, fatigue, pain, dyspnea and emotional status. Treatment should be planned individually and based on the general prognosis and potential for functional recovery, as well as on the patient's desire and motivation to achieve this objective. Many interventions can be used, such as physiotherapy, speech therapy, occupational therapy, among others.

Despite the advantages, the role of rehabilitation in PC still is not prominent for different reasons: lack of coordination in the health team, lack of rehabilitation programs and services at PC facilities and particularly a reduced number of scientific articles registering the improved functional status and quality of life after the rehabilitation interventions.

These study results indicate that functional rehabilitation is a strategy that permits reducing the functional decline and improving the quality of life of PC patients, but highlight the need for experimental and quasi-experimental studies to obtain reliable results and promote safe interventions that result in a better quality of life for this population.

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    Osborne TR, Ramsenthaler C, Wolf-Linder S, Schey SA, Siegert RJ, Edmonds PM, et al. Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life. BMC Cancer. 2014; 14(1):496.
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Publication Dates

  • Publication in this collection
    2016

History

  • Received
    10 Apr 2015
  • Accepted
    27 Nov 2015
Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem Campus Universitário Trindade, 88040-970 Florianópolis - Santa Catarina - Brasil, Tel.: (55 48) 3721-4915 / (55 48) 3721-9043 - Florianópolis - SC - Brazil
E-mail: textoecontexto@contato.ufsc.br