HOME-BASED PALLIATIVE CARE: CHALLENGES BETWEEN DESIRE AND THE REALITY OF RETURNING HOMEABSTRACT
Objective: to understand the repercussions related to the de-hospitalization of individuals in palliative care during the dying and death process.
Method: qualitative study based on Symbolic Interactionism and Constructivist Grounded Theory. Data were collected in a city in southern Brazil between April and December 2021 through in-depth interviews with 11 healthcare professionals and 12 members from six family units (patients and caregivers). The analytical process involved constant comparison, initial and focused coding.
Results: from the comparative analysis of the data, three concepts emerged: "Recognizing the challenges of terminality in the home environment"; "Strengthening palliative care strategies in the home environment" and "Perceiving fundamental factors in palliative care to establish a safe home environment", which, when related to each other, support the substantive theory: "Applicability of palliative care in practice - the reorganization of the home environment to experience the dying and death process", which symbolically defines the experiences of home care in end-of-life situations.
Conclusion: the de-hospitalization process in palliative care underlies a crucial phase of end-of-life care, where the patient, caregiver, and healthcare professional are intervening units in building a safe home environment. It is perceived that balance in this triad is crucial for care centered on comfort and quality of life. However, this reality is not yet experienced by a range of people, which is reflected in insufficient, inadequate care and, consequently, unmet needs.
DESCRIPTORS: Home care; Palliative care; Health professionals; Palliative care at the end of life
RESUMEN
Objetivo: comprender las repercusiones relacionadas con la deshospitalización de las personas en cuidados paliativos durante el proceso de morir y de muerte.
Método: estudio cualitativo basado en las referencias del Interaccionismo Simbólico y de la Teoría Basada en Datos, desde la perspectiva constructivista. La recolección de datos se llevó a cabo en una ciudad del sur de Brasil, entre abril y diciembre de 2021, mediante entrevistas a profundidad a 11 profesionales de la salud y 12 miembros de seis unidades familiares (pacientes y cuidadores). El proceso analítico implicó comparación constante, codificación inicial y focalizada.
Resultados: del análisis comparativo de los datos emergieron tres conceptos: «Reconocimiento de los percances de la terminalidad en el ambiente domiciliario»; «Fortalecimiento de las estrategias de cuidados paliativos en el ambiente domiciliario» y «Percepción de los factores fundamentales de los cuidados paliativos para establecer un ambiente domiciliario seguro», que, relacionados entre sí, sustentan la teoría sustantiva: «Aplicabilidad de los cuidados paliativos en la práctica - la reorganización del ambiente domiciliario para atravesar el proceso de morir y la muerte», que define simbólicamente las experiencias de atención domiciliaria en situaciones de final de la vida.
Conclusión: el proceso de deshospitalización en cuidados paliativos es la base de una etapa crucial de los cuidados al final de la vida, en la que el paciente, el cuidador y el profesional de la salud participan en la construcción de un entorno seguro en el hogar. Se advierte que el equilibrio de esta tríada es crucial para una atención centrada en el confort y la calidad de vida. Sin embargo, esta realidad sigue sin ser experimentada por un amplio número de personas, lo que se refleja en cuidados insuficientes e inadecuados y, en consecuencia, en necesidades insatisfechas.
DESCRIPTORES: Atención domiciliaria; Cuidados paliativos; Profesionales de la salud; Cuidados paliativos al final de la vida
RESUMO
Objetivo: compreender as repercussões relacionadas à desospitalização da pessoa em cuidados paliativos durante o processo morrer e morte.
Método: estudo qualitativo sob a luz dos referenciais do Interacionismo Simbólico e Teoria Fundamentada nos Dados, na vertente construtivista. Os dados foram coletados em uma cidade do Sul do Brasil, entre abril e dezembro de 2021, mediante entrevistas em profundidade com 11 profissionais de saúde e 12 integrantes de seis unidades familiares (pacientes e cuidadores). O processo analítico envolveu comparação constante, codificação inicial e focalizada.
Resultados: Da análise comparativa dos dados emergiram três conceitos: “Reconhecendo os percalços da terminalidade no ambiente domiciliar”; “Fortalecendo as estratégias de cuidados paliativos no ambiente domiciliar” e “Percebendo fatores fundamentais em cuidados paliativos para estabelecer um ambiente domiciliar seguro”, os quais, relacionados entre si, dão sustentação à teoria substantiva: “Aplicabilidade dos cuidados paliativos na prática ― a reorganização do ambiente domiciliar para vivenciar o processo de morrer e morte”, a qual define, simbolicamente, as experiências do cuidado domiciliar nas situações de fim de vida.
Conclusão: O processo de desospitalização em cuidados paliativos fundamenta uma fase primordial dos cuidados no final da vida, em que o doente, o cuidador e o profissional de saúde são unidades intervenientes na construção de um ambiente domiciliar seguro. Percebe-se que o equilíbrio nessa tríade é crucial para o cuidado centrado no conforto e na qualidade de vida. Contudo, essa realidade ainda não é experienciada por uma gama de pessoas,o que se reflete em cuidados insuficientes, inadequados e, consequentemente, em necessidades não atendidas.
DESCRITORES: Cuidado domiciliar; Cuidado paliativos; Profissionais de saúde; Cuidados paliativos na terminalidade da vida
INTRODUCTION
Scientific and technological advances in healthcare are determinant and important for maintaining life, indirectly promoting significant changes in epidemiological patterns, influencing increased life expectancy, and preventing the increase in the number and prevalence of chronic degenerative diseases1. This new scenario has stimulated a significant increase in care needs, especially in the home environment, which have evolved to meet and supply the demands of a constantly changing world, focusing on the quality and well-being of patients and families2.
Inserted in the healthcare network, Home Care (HC) integrates and interconnects levels of care, from primary to tertiary health, enabling the maintenance of treatment, rehabilitation, and assistance. For people experiencing a terminal condition/disease and their family, HC, originating from the Better at Home Program [Programa Melhor em Casa], also constitutes an important alternative because, in addition to providing comfort and quality of life, it minimizes costs inherent to hospital admission3.
This Program, proposed by the Brazilian federal government in 2011, aims to offer multiprofessional healthcare, disease treatment, prevention of sequelae, palliative care, physical rehabilitation, and emotional support, especially to people restricted to home or bed, and who need frequent care or complex procedures.
The World Health Organization (WHO) recommends that assistance to individuals in terminal conditions be anchored in the purposes of palliative care4-5, redefined as follows: "An approach aimed at improving the quality of life for patients and their families who are facing challenges inherent to a serious, life-threatening illness, through early identification, thorough assessment, and effective relief of pain, suffering, and other physical, psychosocial, and spiritual complications"6. Care actions also extend to the patient's family members/caregivers6-7.
This mode of care and philosophy of treatment emerged to meet the growing demand of patients with incurable diseases who were not adequately served by the dominant biomedical model. According to WHO estimates, over 40 million people will need palliative care at the end of life in the coming years, but only 14% on average will receive this assistance7. This demonstrates the urgent need to expand and extend services with this focus7-8.
Although the expansion of such care is an emerging necessity in healthcare settings (homes and health institutions)8, there are still many challenges to overcome, including limited access due to a shortage of coverage and adequately trained human resources. Furthermore, there is a cultural paradox of stigmas and taboos surrounding death that exacerbates existing barriers9. It is noteworthy that there is a fragility of policies and resources in this area. Brazilian public policy lags behind that of other Latin American countries, such as Colombia, Costa Rica, Chile, Mexico, and Peru10. Moreover, in the latest quality of death ranking conducted by the Worldwide Hospice Palliative Care Alliance (WHPCA), Brazil ranked among the worst positions (79th) out of 81 countries evaluated11.
To expand the reach of palliative care, the WHO asserts that it is essential to integrate it early into Primary Health Care (PHC) policies8. However, in the Brazilian scenario, the reality of public policies faces numerous challenges to be debated, especially within PHC, which is responsible for organizing home care. This is one of the favorable settings for the applicability of PC, including in the supplementary health system, but it remains largely unexplored12.
The desire to be and remain at home, outside the hospital environment, with family members, during the course of a chronic and terminal illness, has been frequently reported by patients in these conditions13. However, the difficulty of accessing specialized services, the precariousness of investments, and the lack of expertise of health professionals are factors that frighten and evoke a negative experience related to the care of the dying process and death at home11-14.
In response to all these difficulties, PHC remains a fundamental strategy for monitoring patients and family members who choose to stay at home during the end-of-life process. Thus, the objective of this study focused on understanding the repercussions of the de-hospitalization process of the person in palliative care during the dying and death process.
METHOD
This is a qualitative study, conducted based on the results of the doctoral thesis entitled: [omitted for blind review], which used Symbolic Interactionism (SI) as a theoretical framework, and Grounded Theory (GT), constructivist approach, as a methodological framework15. The research report was structured based on the guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ).
The study was conducted in a medium-sized municipality in southern Brazil, and the selection of participants occurred intentionally in two care settings via the Unified Health System (SUS): "Better at Home Program (PMC)” [Programa Melhor em Casa] and Basic Health Units (UBS). These settings ensure home care after hospital discharge. However, only the PMC has a specialized multidisciplinary team for this purpose, with experience in palliative care. In the municipality under study, the PMC has only one Home Care Multidisciplinary Team (EMAD) and one Support Multidisciplinary Team (EMAP), and Primary Care also has 32 UBS.
The choice of the two settings to conduct the study, in addition to the inclusion of different actors (professionals, patients, and family members), was based on the potential that, by triangulating the research location and participants, the understanding of the phenomenon and the interpretation of results would be expanded. This is because the home care space offered by UBS is marked by a care profile focused predominantly on health recovery, prevention of complications, and referral to more complex services when necessary. On the other hand, the care offered by PMC is closer to the principles of palliative care, as it prioritizes patients who need frequent care and/or complex procedures.
The study included 23 individuals: 11 health professionals and 12 members from six family units, all of whom had in common palliative care assistance in the home environment. A family unit was considered to have at least two members, one being the patient and the other identified as the primary caregiver.
This sample was defined by theoretical saturation, meaning participants guided the conceptual paths explored until no new evidence emerged that significantly contributed to understanding the phenomenon and constructing the substantive theory, thus concluding the inclusion of new participants and the composition of new sample groups15-16. This process was discussed by the authors during data collection and analysis.
Eligibility criteria included being 18 years or older, experiencing home care in the end-of-life process after hospital discharge, and not having neurological disorders that could compromise speech and attention. For ill individuals, additional criteria were: diagnosis of a chronic disease without curative response to treatment, knowledge of the incurable prognosis, and being mentally fit to answer interview questions. The assessment of this fitness was considered by researchers, taking into account the score obtained in the Mini-Mental State Examination (MMSE)17. For health professionals, criteria also included having professional experience in assisting people with serious illness or end-of-life care.
Professionals on vacation or leave during the data collection period were not included, and patients/family members and professionals who could not make time for the interview after five scheduling attempts were excluded. The 23 participants were organized into two sample groups. The first comprised three family unit cores (three patients and three family members) and six health professionals who shared specialized home care provided by the PMC, totaling 12 respondents. The second sample group consisted of three family cores (three patients and three family members) and five health professionals, totaling 11 respondents, who had in common the absence of a specialized home care structure, with the local UBS support as their sole reference.
The participants who made up the first sample group were defined based on the inclusion criteria. The composition of the second sample group resulted from hypotheses generated during the analytical process observed from the first sample group. The first group, having previously shared a specialized structure, demonstrated ease and conditions for implementing PC at home, raising questions about the behavior of those who do not share a structure where end-of-life care is available in the home environment.
Interviews were conducted between April and December 2021 at the families' residences and health professionals' workplaces. Participants were initially contacted by phone, briefly introduced to the study, and if they accepted the invitation, a visit was scheduled to explain the objectives, sign the Informed Consent Form, and conduct the interviews. All interviews were conducted by the same researcher - an oncology specialist nurse with emphasis on palliative care, a doctoral student in nursing with experience in qualitative data collection and analysis, who had no prior relationship with the participants from either group.
The in-depth interviews were guided by the following questions: "What do you understand by PC? And how is the availability of this care in the home environment?" From these, other questions were listed to broaden the understanding of the phenomenon. They lasted an average of 40 minutes, were audio-recorded with participants' consent, and fully transcribed verbatim. Transcriptions were not returned to participants due to time constraints in the research development. However, at the end of each interview, participants were asked if they agreed with the analysis of all content recorded in the interview or if there was any part of the recording they would like to suppress. All participants fully agreed with the analysis of the original audios.
Data were analyzed concurrently with collection, following GT precepts through the constant comparison method, which in the constructivist approach consists of two stages: Initial and focused coding16. During analysis, details obtained from observations recorded as field notes and memos associated with transcriptions were added, helping to formulate the central theory. No qualitative data analysis software was used in this process.
The study project was approved by the Research Ethics Committee of the signatory institution (CAAE: 40967620.0.0000.0104), and all ethical concepts were fully recommended in all stages of the study. To preserve the anonymity of the respondents, codenames were used: P, F, and HP referring to Patients, Family members, and Health Professionals respectively, plus - PMC or UBS according to their place of work/origin.
RESULTS
Six patients participated in the study: three receiving care through the PMC and three through the UBS, aged between 54 and 84 years, with an average of three years living with the prognosis of an incurable disease. The six family caregivers were between 18 and 48 years old and had been experiencing the caregiver role for an average period of three years. As for health professionals, the 11 participants work in assisting individuals with a prognosis of irreversible disease and/or at the end of life, divided between the PMC team, composed of two doctors, two nurses, one nutritionist, one physiotherapist, and one nursing technician, and the UBS team, composed of one doctor and three nurses. The average time in care activity was six years.
From the analysis emerged the concepts: "Recognizing the challenges of terminality in the home environment"; "Strengthening palliative care strategies in the home environment" and "Perceiving fundamental factors in palliative care to establish a safe home environment". The interrelated categories reflect the experience and interaction among patients, family members, and health professionals as they experience PC at the end of life at home and support the substantive theory: "Applicability of palliative care in practice: the reorganization of the home environment as a choice to experience the death and dying process" (Figure 1). This theory emerged from the interpretation and analysis of the grouping of concepts and sub-concepts, highlighting the importance of care strategies for maintaining and ensuring the safety of patients at the end of life in the home environment.
The substantive theory symbolically defines the challenges and experiences that are evident in the transfer of PC from the hospital to the home environment, and also expresses the strategies used by patients, family members, and health professionals in adapting the care routine in this context of changes.
The description of the concept “Recognizing the challenges of terminality in the home environment” refers to the difficulties and obstacles experienced by respondents in the alternation from hospital to home care and in experiencing PC in this context. Patients, family members, and professionals perceive a variety of expectations and uncertainties because they do not fully understand how the new reality will be in the home context. I brought my mother home because she really wanted and asked for it, but I brought her with fear. We don’t have the same care here as they do there, and if something happens, I don’t know what to do. I'm even afraid of making it worse (F-UBS2). This experience [of caring for a patient at the end of life, at home] depends on the characteristics of each family. Some families are deeply rooted in faith, in the culture of healing, and have an overwhelming fear of losing their loved one, which makes it harder for them to understand (palliative care). In such families, everything becomes more difficult (HP-PCM3). I was really worried about coming back home because nothing was going right [...] in the hospital, so many things were going through my mind, and I was dealing with these thoughts. I just hope things don’t get worse here, and if they do, I don’t even know what it’s going to be like(P-UBS1). Not all families are able to provide proper care; not all will have a specific or knowledgeable caregiver, and, unfortunately, we don’t only serve one family, so it’s all relative. Is it really good to have them (the patient) at home under these conditions?" (HP-UBS1).
Although home PC has evolved and expanded in recent years, it is still incipient, and access to it does not cover all those who really need it. Several factors corroborate this reality, especially the prevalence of taboos surrounding this care, which makes it difficult and creates obstacles for this care to be disseminated, including in the training of new health professionals. We know about her situation, they've explained it to me [...] but now that the disease has worsened and she's suffering more, we prefer not to tell her about her real situation (PC), it's better, she's thinking she's improved and that's why she came home (F-PMC3). I studied a bit of this subject (PC) during college [...] what I use here (at work) came from courses and readings (HP-PMC1).
The difficulty of accessing a structured and specialized PC network stood out as one of the most evident obstacles when it comes to the transition from hospital to home. In other words, although individuals share the same conditions and concerns in the dying and death process, the expectation regarding home care seems to be better perceived in the presence of a scenario with support networks, because when these are scarce, the impact in the face of obstacles becomes more evident. The PMC team is always here, they've become family, if I need this or that they find a way [...] if I need medication, they do it here (home) itself, besides being a help for her (caregiver), because this task (of being a caregiver) fell to her (P-PMC2). When we came home I was very upset, we went a whole week without a visit from the health center staff, not even to ask if we needed anything or not. It's still like that today, if we need anything we have to go there (F-UBS3). I only meet them (staff) when I have to get the bags (colostomy), they almost never appear here at home. When I need something I have to go there. Now I can walk just fine, but before it was her (caregiver) who was up and down looking for things (P-UBS2).
During PC, communication plays a fundamental role in coping with and understanding the disease-prognosis, and becomes, above all, an essential instrument in the decision-making process of patients, family members, and health professionals. Among the various challenges, there is a need for clear and effective communication for the integrality of PC at home, which emerges as a perceptible and evident reality in this context. I missed some guidance when we left the hospital: who would help us out here? Because we don't know what's going to happen, this would certainly help us a lot (F-UBS2). Many, many times we find out that there is a patient in these conditions because the family comes to us. We don't have, unfortunately, enough staff to deal with it (HP-UBS3). We miss care, a visit. I don't know if they are too busy (health professionals) or if they are afraid of not knowing how to take care of us in these moments (terminality) (P-UBS2).
In the scenario where PC was scarce, health care were not very effective, and the lack of referral and counter-referral protocols revealed significant barriers to access. This is another need that emerged in a relevant way as it constitutes a support factor to be strengthened in home PC, particularly at the end of life. If there was a connection between us and the institution from where they (family) are being referred, it would certainly make our work much easier, as we would already know who the family is, what happened, what the disease situation is. So we can prepare to direct and provide good care (HP-UBS2). We don’t have a good counter-referral system. Many of the referrals are incomplete, sometimes only listing the disease and the patient’s information (HP-PMC6).
PC is designed to improve the quality of life of those who need it, and when there is a deficiency in professional support, the experience is marked by insecurity and fear. If there were follow-up care here, everything would definitely be different in terms of our caregiving. We would feel more secure [...] and if we had that support to help, it would be easier and more manageable, because our caregiving isn’t the same as theirs. We don’t really know what we’re doing (F-UBS2). I would feel much more at ease if we had a dedicated team to help us at home. In the hospital, there are all those healthcare professionals, but nothing compares to being at home. However, here we feel more afraid because we’re alone (P-UBS3).
A significant part of the obstacles identified in end-of-life care at home are directly related to how PC is carried out in this environment. Thus, the concept “Strengthening palliative care strategies in the home environment” presents the resources used to integrate and intensify PC in the home routine. And in this regard, communication stands out as an important and necessary tool in this implementation. It was a very honest conversation [...] they explained that she would spend more time in bed, that we would focus on keeping her comfortable, and that this would give her a better quality of life. We’re aware of what’s happening and we’re prepared (F-PMC3). They spoke with me before sending me home, they were very kind, and here the team explained more about my health and my current condition. I understand that I no longer need to return to the hospital since they will take care of me now (P-PMC1) We lacked that conversation and attention from the UBS staff. They didn’t explain much about what was happening or what could happen, and they didn’t want to talk about it (F-UBS1).
The dynamics of referral and counter-referral, considered an essential operational communication tool and recommended by the SUS, proves to be indispensable for the continuity of PC, especially after hospital discharge.
The continuous assistance provided by the dynamics of reference and counter-reference was considered a positive support made available to minimize the insecurity of returning home after hospital discharge. Receiving effective support in these moments of fragility, as reported here, represented a relief and a guarantee of assistance, especially when this support comes from health professionals who place themselves as an integral part of providing care in that environment. When we came home they explained her case thorouhgly, what can happen in the future [...] when we hear something like that we get lost. If it wasn't for them (staff) I don't know what would become of us (F-PMC1). Sometimes they (family) just want to talk, to be heard, it seems that our presence there (home) gives security, they feel special. For us, on the other hand, it's a routine procedure, but for them it's an event (PS-PMC2).
Being able to count on a support network in moments of fragility is essential for the support of home PC. In environments where care is provided by a multidisciplinary team, there is a greater perception of security and satisfaction regarding care. Health professionals also report greater tranquility when counting on a wide support network and more adequate structure to work. It changed a lot after these visits started. Before we had to take him here and there, and it's not easy with him like this. Now it’s different, they do everything here at home. It made it much easier, especially for him (F-PMC2). The engagement of the whole team greatly facilitates the treatment, having the collaboration of each one within their area of work towards the same goal, and for that family it makes a huge difference (HP-PMC4).
The positive reports from these strategies supported and directed the elaboration of the next concept: “Perceiving fundamental factors in palliative care to establish a safe home environment”, which highlights family reorganization. This family reorganization is permeated by the interaction among its members, as one of the fundamental strategies to be established in conjunction with health professionals, considering it essential to promote quality and effectiveness of PC in the home environment. Moreover, this strategy stands out, indicating that in the transfer from hospital to home environment, there is a need to reorganize the family routine as a criterion to maintain care. In this process, as healthcare professionals accompany and, to some extent, assume the role of family members, they come to recognize the most basic needs of families facing PC at home. This recognition enables them to assist family systems in their process of reorganization.
In this context, it is also perceived that in order to provide safety and quality in care, many families had to reorganize not only the physical space of their homes, but also the new roles and responsibilities assumed within the family nucleus.We had to set rules for everything, especially for feeding, because of the bag (colostomy). The medications, the time for sunbathing, the time for bathing, the food - everything here now revolves around her (F-UBS1). Everything has changed here at home. We had to organize ourselves to provide her proper care. I created a care schedule with my siblings. Each of us has designated times and responsibilities. So far, this has been working well. (F-PMC3).
Amidst adaptations and reorganizations, with new meanings and reinterpretations of the experienced situation, many families lack support. Therefore, another important factor is the perception of security that the presence, even if remote, of a support team conveys to these families. Today it's very nice to stay at home. The fear of something happening has ended. The staff (team) lends a hand. Here at home, everyone does a little bit [...] It was challenging at first, but now we've become "experts" (P-PMC3). When the entire family is involved, our work there improves significantly. We teach, they learn, and that's how it works (HP-UBS5). The family knows how to reach us. We have an on-call contact number for any issues (that they're unsure about). They contact us, and we provide guidance or visit them. This gives them more security (PS-PMC5).
Thus, the presence and support of the healthcare team for families who choose to care for and experience a family member's end of life in the home environment promotes a sense of security and well-being. The feeling of being at home has advantages for them (family and patient). They return to their routine, their own space. They can use their own bathroom, choose what to eat. All of this is so important at this moment. (HP-PMC3). When the patient returns home, they seem like a different person. There's joy in being close to family. They have freedom, without the restrictions of the hospital. They feel safe and comforted by being near everyone (HP-UBS4).
Although many patients and family members choose to experience the end of life at home, concerns about safety and the absence of support networks significantly influence this decision.
DISCUSSION
The substantive theory constructed in this study allows for the understanding that considerable changes occur in family cycles and care networks during the de-hospitalization process, in relation to end-of-life care. This stems from the possibility of promoting, through PC, better quality of life, safety in home care, and dignity in the process of death and dying.
PC in the home environment refers to a multidisciplinary care approach that aims to provide comfort and quality of life to individuals with advanced or terminal illnesses. It is intended for those who choose and are able to remain in their own homes18, supported by a prepared team with knowledge related to symptom management, communication, teamwork, and family support18.
However, a review study pointed out that when a close person is receiving PC at home, family members usually experience an enormous responsibility regarding their role, but often face a lack of adequate support from health professionals and services. This, combined with other stressors such as witnessing the suffering of a loved one, feelings of helplessness, and excessive demand for physical, emotional, and financial support, can lead to overload and exhaustion19. Over time, the deterioration of the patient's condition and changes in the situation increase the need for more intense and extensive support from health professionals20. However, the lack of support from a professional trained in palliative care is a significant problem in many health systems. This reinforces the need for health professionals to adequately improve themselves to better meet the demands of this population - sick people and their families - and, consequently, enhance the care provided.
Although the need for home-based PC is recognized, its reality is still scarce, and its applicability faces many limitations and challenges that need to be overcome to ensure universal access to all who need it. A significant portion of patients and family members, even those already familiar with PC, face some practical challenges, both in its applicability and access. This is usually related to the lack of professional discernment and preparation, and, above all, to the taboo that still persists in a large part of society, which preserves a common sense of associating it directly with death21.
Regarding these paradigms, it is noted that many of these perceptions have been showing a discrete but significant evolution in recent years. This is because, for a long time, PC was stigmatized and related only to end-of-life care and, therefore, as an event to be avoided, causing many people with serious illness and in the terminal stage to be hospitalized in the hope of prolonging their days, without primarily considering the comfort and quality of life of that person and their family22. Over time, especially with scientific developments, people have come to recognize that PC can provide a positive and comforting experience at the end of a person's life and for their family.
It is worth noting that, in this scenario, dying at home is becoming an increasingly frequent desire among people experiencing serious and limiting diseases23-24. Being at home with adequate support from health professionals provides a sense of security and continuous support, allowing sick people and their families to feel more comfortable and supported in this environment. Thus, home-based PC is assuming a prominent place, being considered a valuable option for those who wish to experience their last days at home, surrounded by family and friends18. However, it highlights the importance of home-based PC services and the need for robust support both at home and in the hospital to meet the preferences and needs of patients and their families.
The transfer of the patient in end-of-life care from the hospital to the home - de-hospitalization - is already emerging as an auxiliary and complementary resource in maintaining quality of life, having as principles for such interventions the individuality and autonomy of the user. However, this return home is still permeated by concerns and uncertainties that vary according to each reality/context, requiring careful planning and compassionate communication between health professionals, patients, and family members25.
Moreover, this process can awaken feelings of fragility and insecurity, not only in the patient but also in their caregiver, especially when they act intuitively, due to the absence of adequate preparation, with insufficient guidance. This is accentuated by the absence of support networks and available resources, factors that predispose to the safety of adequate and quality care26.
The demands that arise from this condition are still strongly expressed in the needs for family reorganization, routine adaptations, and relief of the burden for caregivers. These aspects end up generating apprehensions and repercussions and put at risk the integrality of the family system and future plans19. As observed in this study and in the literature27, returning home can destabilize and cause apprehension in all family members. Therefore, the assistance of the specialized team in PC assumes an essential role, because, in addition to alleviating suffering by offering care, it has means that can promote and maintain dignity and quality of life in this process. These subsidies, when structured and organized in advance, are sustained and strongly perceived in the de-hospitalization process16.
This reality is experienced by families who share specialized care, as the dynamics of routines, physical reorganizations, and family circumstances can be better elaborated, resulting in family units that are healthier, more integrated, and in a safer and more effective care environment. The support shared by professionals specialized in PC assistance makes families feel supported in their fragilities, share the burden of their routine, and have their fears and apprehensions alleviated21.
On the other hand, in families that do not have care support, it is common to find feelings of helplessness, difficulty in understanding the reality of end-of-life care, and especially feelings of exhaustion, expressed by increased emotional and physical burden related to care.
It becomes evident, therefore, that follow-up strategies for those with PC needs in their homes are essential for the burden and discomforts arising from this process to be actively mitigated26. It is also recognized that support networks are capable of providing even more comprehensive care, improving quality of life, family support, and coordination of care continuity.
In the process of de-hospitalization in PC, support networks constitute one of the main foundations of assistance and play a crucial role in adaptation, family reorganization, and support for the caregiver, in order to ensure emotional, physical, and care support in moments of greater vulnerability of the patient and their family members. The PMC team demonstrates being better prepared to deal with the adversities of the user and their family and, for this reason, manages to provide broader support as an institutionalized support network, going beyond the needs that can be met by social and family support networks.
Allied to support networks, the presence of professionals specialized in PC, who perform clear and objective communication, also seems to provide, in addition to greater security, better understanding and adaptation of the family and the patient in their final life process. Experiences reported in other studies demonstrate that, when experiencing the care approach focused exclusively on PC, many families show improvement in the performance of their organizational and relational functions16.
Considered a crucial and primordial tool in PC28, communication, especially at the end of life, is pointed out as one of the most significant challenges to be overcome in home care. This is because, when inadequate, it can result in poorly organized care, exacerbated fears, and unmitigated symptoms, as well as unnecessary hospital readmissions and health complications13. Thus, clear and objective communication, advocated in PC, favors quality of life, providing emotional well-being and ensuring that the patient's wishes are respected. In addition, it facilitates and helps families deal with grief and make important decisions related to patient care, favoring a better understanding of the dying and death process29.
Although talking about death provides a way to understand a little more about how to face it, in this study this topic proved to be still difficult to accept, complex, and full of ethical and professional dilemmas, influenced by paradigms that tend to consider cure solely as a synonym for therapeutic success. In response to these demands, the importance of reflections and discussions related to the topic is evident as a possibility to minimize the impact of suffering and ensure the patient's human dignity in the final process of life. Therefore, the lack of preparation and the difficulty in establishing effective communication prove to be important obstacles to a clear understanding of the dying and death process and, consequently, are detrimental to the organization of safe therapeutic approaches to be established.
The approaches identified in this study, and corroborated in other literature13,20,29, show that communication during terminality, especially in the process of transfer from hospital to home, emerges as an important strategy to strengthen comprehensive, humanized, and adaptive care in the triad of health professional, patient, and family member, also being an essential element in the decision-making process at this stage of life.
It is evident that PC, in the home environment, promotes a more personalized approach adapted to the individual needs of each patient and their family unit. However, several obstacles, manifested by the participants in this study, still hinder this approach, which inevitably impairs the possibilities of comprehensive and quality care, revealing that not all family contexts have access to organizational, physical, and emotional preparation to receive the patient back home.
The implementation of home-based PC requires an individual and careful assessment to determine in which situations this approach can bring more benefits. This is because some cases may require more specific attention in hospitals, clinics, or specialized units. Health professionals need to be attentive to identify early situations that require intervention and, thus, can control symptoms and improve the well-being and quality of life of patients at the end of life.
In this sense, a study conducted with 135 patients followed in two PC outpatient clinics in the city of São Paulo identified that the most prevalent and intense symptoms were changes in well-being, anxiety, sadness, and fatigue. And sadness, dyspnea, drowsiness, anxiety, and depression showed a negative correlation with spiritual well-being and functionality with symptom overload. These results led the authors to infer about the adequate management of these symptoms, as their intensification resulted in worsening the perception of spiritual well-being and compromised the patient's functionality with repercussions on their family members30.
However, another review study pointed out that, in addition to deficiency in training, qualification, and disposition/profile for this type of assistance, health professionals faced other challenges for the successful implementation of home-based PC31. In practice, these challenges mainly involved the absence of effective support from management, reverberating in the deficiency of human resources, difficulty in accessing medications for pain relief, in visiting homes (means of transport) with the necessary frequency, non-existence and/or limitation of electronic resources for families to make contact whenever they deemed necessary. Furthermore, it also constitutes an important obstacle to the implementation of PC, including deficiency in communication between different points of the care network and difficulty in obtaining support from secondary services.
It is important to emphasize that every family context has, to some extent, the potential to become a source of support for the patient and be a complementary ally of health professionals. However, these attitudes will depend on the presence of support networks and, above all, on how each family reacts to the prognosis of terminality, influenced by the way they receive, interpret, and project this reality16.
These attitudes guide the behaviors of sick people and their family unit in the face of the process of death and dying. Therefore, welcoming experiences in a comprehensive and humane way should permeate any care planning, providing comfort and quality of life to people with advanced or terminal diseases in their own home.
Possible limitations of the study are related to the fact that data were collected only in relation to the home as a context for the application of PC and in families experiencing short-term palliative care. The findings, however, are valid, as they reflect the experiences, interactions, and apprehensions experienced by a significant portion of patients, family members, and health professionals in the home context. In future studies, however, data collection should be prioritized in multiple contexts and in families experiencing long-term PC, as it is believed that there are economic and emotional implications and modifications in support networks for these families. These implications also need to be evaluated, especially in relation to the burden and organization of family cores, as well as the way support networks operate.
FINAL CONSIDERATIONS
In an emerging care approach, with exponential growth at present, home-based PC is proving to be an essential public health necessity. Being at home provides patients in end-of-life care and their family unit with a comfortable, familiar, and safe environment, which can reduce the stress and anxiety commonly associated with hospitalization.
Returning home for end-of-life care is not accepted by all individuals and family cores. Therefore, it is important to respect the fact that each person has their own preferences and needs. A thorough assessment is always essential, but above all, it is important to listen to them and respect their wishes, as this is a fundamental act of support at any stage of life, especially during terminal illness.
Home care in terminal conditions has shown to be a constant appeal among family members and patients who wish to spend their last days at home. However, being at home cannot simply be translated as returning home. De-hospitalization transcends this "simple change of environments," highlighting the need for preparation, knowledge, and support for the individual and their family, primarily through clear and effective communication, respecting the principles of human dignity and autonomy, and providing an environment conducive to discussing death, as this topic emerged as a crucial point in this phase of life.
The results evidenced here certainly meet the perceived needs and can be used as a basis of interest for structuring and improving home care and public policies in the context of de-hospitalization in the dying and death process. It is also expected that, in addition to promoting discussions around the topic, the study will contribute not only to the literature but especially to assertive care practices, ensuring that quality of life and human dignity at the end of life are guaranteed and respected. Based on the study results, it is recommended that the implementation of PC in multiple contexts and diverse environments be considered.
The proposal under investigation here does not deal with the interruption of one treatment in favor of another, but with the promotion of active, person-centered care, proportional as the disease progresses and the prognosis worsens. The profile of the PMC has proven essential for promoting the quality of life and security of patients and their families after discharge. This underscores the necessity of incorporating PC programs into the foundational and ongoing training of healthcare professionals involved in primary care networks.
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NOTES
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ORIGIN OF THE ARTICLE
Extracted from the thesis - De-hospitalization in Palliative Care: Meanings attributed to home care in the terminality of life, presented to the Graduate Program in Nursing at the State University of Maringá - UEM, in 2022.
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FUNDING INFORMATION
This work was carried out with the support of the Coordination for the Improvement of Higher Education Personnel - Brazil (CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior) - Financing Code 001, and ProForte Notice UNEB nº 110/2023.
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APPROVAL OF ETHICS COMMITTEE IN RESEARCH
Approved by the Ethics Committee in Research of the Universidade Estadual de Maringá - UEM, under opinion No. 4518268, and Certificate of Presentation for Ethical Appraisal n.º 40967620.0.0000.0104.
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TRANSLATED BY
Agência Latintrad - Leonardo Parachú.
Edited by
Publication Dates
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Publication in this collection
09 Dec 2024 -
Date of issue
2024
History
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Received
13 Apr 2024 -
Accepted
10 Sept 2024
