Structural Challenges of Providing Palliative Care for Patients with Breast Cancer

INTRODUCTION

The high incidence of breast cancer in Iran and reduced age of contracting this hard-to-cope-with and costly illness persuaded cancer specialists to apply the term “cancer tsunami” in a bid to highlight the severity of country's human and financial losses stemming from this disease.[1] In Iran, breast cancer is the most common cancer in women.[2] it does comparatively incur the highest direct costs of treatment so much so that the average total cost of pay out-of-pocket costs on breast cancer has been estimated at 2,053,000 Tomans ($ 684 USD) per month.[34]

Due to the high cost of health care and lack of skilled manpower to provide health care, it requires a heightened level of specialized services in palliative care, owing to the increased incidence as well as lower age distribution, as compared to other countries.[56] Today, provision of a comprehensive quality care is an undeniable necessity.[78] However, providing integrated client-based services, for some reason, including changes in the trajectory of diseases toward chronic diseases and aging population, still remains a major challenge for health-care system.[9]

Palliative care, as a basic human right, is essential for cancer patients.[810] Yet palliative care is defined as a care philosophy and a structure-based system to provide organized care that attempts to alleviate or extenuate suffering through early identification and management of pain and other physical, mental, and intellectual problems, which should be accessible based around patients’ needs.[11] Palliative care programs encompass a wide range of services including home care, day care, inpatient/outpatient units, hospital teams, and nursing home as required by patients with chronic diseases.[1213] These services are not limited only to specialized palliative care services, with level varying from one country to another. It is, however, estimated that over 20 million people are in need of palliative care in low- and middle-income countries across the world.[13] Taking into account the role of PC in cutting down on unwanted hospital admissions[14] and enhancing the quality of life,[15] as well as reducing the financial burden of cancer bearing heavily on the health system,[16] the health-care professionals are trying to provide the highest quality care using available resources.[17] In addition to providing clinical PC services, they considered a logjam around the health system in developing countries. In Iran, palliative care is a brand-new concept with no written plan of specialized services in accordance with the proportionate share of the overall demand.[18] Sporadically delivered, PC does not enjoy adequate support to the extent that patients usually do not receive essential care such as nursing as well as those associated with social, psychological, physical, and spiritual needs.[19] Although government's noncommittal approach to the philosophy of PC is said to be the greatest stumbling block to gaining access to and running the PC programs in the developing countries, and that the majority of problems to the implementation of PC services arise from absence of government strategies, consistent national policies, and broad negotiations with countries involved, it seems that structural hurdles to be the main concern of the health system structure of such countries, thereby considering the hindrance to establishing a palliative care system (PCS).[92021] Based on the researcher's systematic surveys, it seems that the existing knowledge in the field of palliative care is not well expounded, with limited studies delving into the stakeholders’ perceptions about palliative care as well as the obstacles and challenges to its being established.[22232425] Therefore, proper planning in relation to palliative care for cancer patients is a perceived need in the Iranian health system.[21] As models and theories can help researchers with identifying, describing, explaining, or predicting,[26] Donabedian model, as a conceptual framework, was used in this research.[27] In regards to the fact that identifying the matrix as well as the views of stakeholders are sine qua non and indispensable conditions of planning, the current study was conducted in response to the question “what is the stakeholders’ understanding and views about the existing structural challenges to providing palliative care in Iran?”   It is the perceived barriers to supportive and palliative care and to help the development of this type of service.

MATERIALS AND METHODS

This qualitative study used semi-structured in-depth interviews with purposeful sampling conducted in Tehran, Iran, from January 2015 to June 2015. Under this model, the quality of care provided in the health system is defined in three measurable dimensions: Structures of care, processes of care, and outcomes. In this model, structure is meant to be the context or the environment in which patients receive services, such as equipment, facilities, personnel, healthcare policies, and cultural, social, and political characteristics of society.

Participants consisted of twenty health practitioners and women with breast cancer referring to the outpatient palliative care clinic in the Cancer Research Center of Shohadaye Tajrish Hospital (SBMU CRC) and Medical Oncology ward at Taleghani Hospital affiliated to Shahid Beheshti University of Medical Sciences as second referral center in the field of cancer in Iran.

Inclusion criteria for the admission of patients are: Definitive diagnosis of cancer made by a specialist, being aware of the diagnosis, lapse of at least 6 months from the time of diagnosis and treatment or completion of treatment cycle, and ability to speak in Farsi language. The criteria for admitting care providers included working in the area of care and treatment of cancer patients and having at least 1 year of hands-on experience in the field of cancer. Since in qualitative research there is no set criterion to determine the number of participants prior to the study, sampling continues as long as other participants do not add new information to the findings and thus, it goes uninterrupted till we reach data saturation.[26] In this study, data saturation was reached right after conducting twenty interviews. The researcher, before the start of the interview, explained to the participants the purpose of the study, confidentiality of information, and recording of interviews. They were asked to complete the consent form if they wished to participate in the study. Each participant agreed to have her views used while opting to remain anonymous.

The Ethics approval was obtained from the Shahid Beheshti University of Medical Sciences with code no.: SBMU2.REC.1394.51. The researcher, using pivotal questions, including: “During the treatment, what services were most needed by you/client?”… “What is your experience of receiving/offering care?”…. “For what reason you were unable to access the services you needed (patients)?”… “For what reason you could not offer services to your patients?” (healthcare providers). The interviewer, using follow-up questions, encouraged the patients to express their deeper experiences. Questions like “what do you mean by that?” “What did you feel then?”… “What happened next?”… “Could you possibly make yourself more clear by setting an example?” and so on. All the interviews were recorded by digital audio recording. The interviews were immediately transcribed after having been carefully listened several times, citing modes of expression such as laughter, sighs, tears, and silence were written. The interview process lasted for 30–90 min.

RESULTS

In this study, twenty participants comprising nine women with breast cancer and 11 care providers were interviewed. Patients’ age ranged from 35 to 61, with the average age of 43 years. They were all married. An interval of 8–80 months has passed since the initial diagnosis. Of these, seven patients underwent total mastectomy, one breast-conserving, and one partial mastectomy surgery. Health-care providers included nine clinical nurse specialists (seven females and two males) and two physicians. The median years as a palliative care provider were 10 years (range 3–21(. In analyzing the interviews, 685 codes emerged once all duplicate codes were removed and similar cases merged, which were characterized in two main categories and eight subcategories [Table 1].

Table 1 Categories and subcategories from the analysis

DISCUSSION

The findings of this study, aimed to explain the perception of stakeholders around the structural challenges to palliative care provision for women with breast cancer, showed that structural challenges are classified into two categories: Not-yet-elaborated palliative care services and inadequacy of healthcare providers.

Lack of specialized palliative services, referral system, and inefficient insurance services are cited as structural impediments to providing palliative care by the participants so much so that even with a change of policy of providing specialized palliative care toward primary care provided by general practitioners and community health nurses,[930] and awareness of the benefits of palliative care of the interdisciplinary counseling teams, the cancer patients in Iran still receive their needed care in hospitals while centers that provide home care are few and far between, and there is no such thing as hospices.[23] One of the important aspects of care provided to patients with cancer is the availability and possibility of utilizing medical resources and financial support by both the government and insurance organization to the extent that issues such as patients’ insurance coverage (amount of out of pocket payments),[23] and failure to provide health services based on leveling, and consequently increases in health care costs, seem to be the ostensible barriers to palliative care provision in this area.[18]

Service tariffs seem to be among the main challenges to palliative care services provision, which practically renders impossible manpower recruitment (doctors, nurses, and all service providers). Obviously, without service tariffs, home-care services will be out of question.[313233] One of the measures taken to address this problem is the “Health Reform Plan.”[23] and now after 1 year into the implementation of the plan, 95% of the population is covered by supplementary health insurance and people's out-of-pocket payment in the area of health scaled down from 55% in 2009 to 10% in 2014.[34] Therefore, cooperation between organizations and insurance organizations on a large scale is regarded one of the constructive approaches toward promoting care based on the clients’ individual needs and life quality revolving around the development of cooperation across individuals, groups, and organizations.[1035]

Despite the need for specialized training and basic knowledge and skills in providing PC for all health professionals,[36] participants in our study were cited as holding that lack of knowledge/awareness of the palliative care treatment team and the weakness of teamwork are the core causes of the care providers’ inefficiency. Tahmasebi stated that more than half of the Iranian physicians possess scant knowledge in the area of palliative care and its philosophy, symptoms management, and how to go about the palliative care,[37] with more than half of them agreeing to their having little knowledge in pain control management and end-of-life and palliative care principles.[38]

Different studies acknowledge that the main problem with the health system in Iran, in the area of palliative car, is lack of definition of palliative care in the health system, lack of PC job title for nurses,[24] limited number of palliative medical specialists,[5] inefficiency of nurses in providing palliative care,[25] and shortage of in-service training programs to empower professional staff.[39] Furthermore, consistent with the rest of the world (except for a few European countries) incorporating a palliative care module to be integrated into medical curriculum was not compulsory,[36] and there is no such thing as syllabus content as far as PC is concerned.[15243840]

Among other factors affecting the quality of care is team collaboration.[4142] The results emerging from numerous studies showed that teamwork failure, interprofessional conflicts and the concomitant tensions,[43] lack of coordination between services, heterogeneous palliative care coverage,[44] unclear job descriptions,[45] lack of awareness, and transparency of duties between health workers[46] can contribute to challenges in palliative care provision.

Palliative care, being a dynamic discipline and considered a specialty in medical science, requires collaborative teamwork reinforced by its being multidisciplinary by nature[47] thus, important step can be taken toward resolving the structural problems within the PCS via promoting a culture of teamwork among other health team members through formal education, heightening professional awareness around palliative care and concerted measures of the PC support groups, health administrators, and policy makers.[4849] In short, under the health policy instrument for promoting primary care, enacted by the health policy and reform secretariat in 2007, the flaws in the healthcare structure of Iran include lack of insurance coverage, centralized structure, failure to establish the position of nongovernmental sector, inefficacy of the existing structure against new needs such as cancer, physical resources taking precedence over human resources, lack of balance in the staffing, financing, payment system, and the lack of rules.[18]

It is noteworthy that the current study is qualitative and has been conducted on a small number of participants, thus being of narrow generalizability.

Today one of the challenges of the health system is the provision of palliative care services to chronically-ill patients. Participants believed the PCS in Iran is at the mercy of structural impediments such as improper definition of palliative care services, including home care, palliative care and specialized rehabilitation programs, inadequate training and lack of awareness and expertise of palliative care staff, lack of educational guidelines and protocols on healthcare, lack of transparency of duties, poor teamwork, and inefficacy of Insurance. In Iran, Palliative care is a new discipline and its objectives are not yet fully achieved. It is hoped that in near future, the system will be all-set by improving staffs’ professional awareness in the health system and removing the existing structural barriers. Although the aim of this study was to evaluate the structure, there was no significant distinction between structure, process, and outcomes. In addition, the components which are included in the current study as structure coincide with proposed structural components in the study of Farjah and Detterbeck 2015.[50] With respect to the gravity of services tariffing, authorities in the health system may endeavor to determine relative value of services and health services tariffing, taking into account the existing structural barriers to establishing PC system.