CHAPTER ONE:

INTRODUCTION

Background to the study

Communicating openly with ill patients whose death may be imminent (terminally ill patients) is becoming more imperative in patient care and disclosure of diagnosis seems to be common practice. However, there seems to be a variability in prognostic information communication as patients’ information needs may differ along the course of their disease progression (Innes & Payne, 2009). Despite the observed variability, there seems to be relatively little work done in this area to address prognostic communication discrepancies in different continents of the world, especially in Africa. Meanwhile, it is believed that communication of prognostic information to patients is conventionally the responsibility of healthcare providers. It is also the responsibility of healthcare providers to respect the need to maintain some ambiguity about the future if this is a patient’s wish (Clayton, Butow, Arnold & Tattersall, 2005; Levin, 2015). The wish of an individual patient should, therefore, be the determinant of how healthcare providers will communicate the patient’s prognostic information.

Prognostication and subsequent communication of the prognosis to the patients/relatives have become part of medicare (Abbey, 2008; Smith, 2014) when managing any diagnosed illness. Although important in every patient’s care, communicating prognostic information effectively when caring for terminally ill patients seems more important among the healthcare providers (Gauthier, 2008; Smith, 2014). This is because; most of the actions and inactions of these patients concerning their general life at this phase may be dependent upon the information about their condition that they receive from healthcare providers (Innes & Payne, 2009; Mack & Joffe, 2014;

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Walczak, Butow, Clayton, Tattersall, Davidson, Young & Epstein, 2014). As a result, healthcare providers should endeavour to communicate prognostic information to patients in order to give them the best chance of peaceful death (Lakanhi, 2011).

Communication of prognostic information here entails the satisfaction of the terminally ill patients’ prognostic informational desire. For this to be desirously done, healthcare providers should use sound psychological and communication knowledge to ascertain the informational needs of the individual patients concerning their illness and address them individually, bearing their uniqueness in mind (Smith, 2014). Patients can also defer their decision-making and prognostic information to others (Russell & Ward, 2011; Laidsaar-Powell, Bu, & McCaffery, 2013). Thus the individual need of patients about sharing of their prognostic information should be the determinant of what information to be communicated or shared with the patients and/or the relatives (Russell

&   Ward, 2011). Those who want to know should be made to know but the desire of those who do not want to know should be respected as well.

Healthcare providers are expected to initiate communication about prognosis at the appropriate time to enable patients make timely informed decision about their treatment options (Simon, 2013). However, fear of damaging survival hope, anxiety, distraught and the likelihood of giving inaccurate prognostic estimates to the terminally ill patients have been suspected as part of the reasons for withholding sincere prognostic information by healthcare providers (Mack & Smith, 2012; Mack & Joffe, 2014). Studies have also revealed that some terminally ill patients would not want to know about their accurate prognosis in order for them to have some sense of hope in their condition (Russell & Ward, 2011; Zasler, Katz & Zafonte, 2012; Pujani, 2013). On the other hand,

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majority of terminally ill patients want to be given detailed prognostic information of their condition (Russell & Ward, 2011; Kadakia, Moynihan, Smith, & Loprinzi, 2012). Therefore, communicating prognosis may provide more opportunities for the patients and their relatives to say goodbye, complete personal and financial arrangements, and plan for the last phase of the patients’ lives (Catalonian Balearic Society for Palliative Care, 2012; Mack & Joffe, 2014). Chen (2009) is of the opinion that sharing sincere prognostic information with terminally ill patients is the desired practice and the wish of most terminally ill patients. Even as benefecience and non-malfecience can be reasons for withholding prognostic information by some healthcare providers, such action is deemed deceptive, ethically wrong and disregards patient’s autonomy (Daugherty & Hlubocky, 2008; Van Leeuwen, & Durand-Zaleski, 2014).

Most studies in advanced countries, revealed that sharing of prognostic information with terminally ill patients is the norm (Nelson, 2010; Yun, Kwon, Lee, Lee, Jung, Do et al, 2010; Falco, 2011; Russell & Ward, 2011; Kadakia, Moynihan, Smith, & Loprinzi, 2012). However, in Africa in general, Nigeria and Enugu State in particular, such reports are not evident, and how prognostic information is communicated to the terminally ill patients by healthcare providers is still unclear. It becomes necessary to determine empirically what patients perceptions are on communication of prognostic information by healthcare providers in Enugu State, Nigeria.

Statement of problem

Terminally ill patients incur huge expenses on hospitalization, chemotherapy, radiotherapy, and surgeries in Nigeria, with the hope of recovering after interventions. Being aware of their sincere prognosis may afford them the opportunity to make certain

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life-ending decisions, like reconciling with God, writing of will, advice to relatives on how to handle certain future issues, before their demise. Studies have suggested the importance of communicating with patients about their prognosis (Back, Anderson & Arnold, 2008; Chen, 2009; Mckee, 2013). However, such communication to the terminally ill patients seems not to have been fully investigated, especially, in African setting, probably because of our seeming African culture of shying away from discussing death-related matters when sick.

Anecdotal reports and observations by the researcher, however, revealed instances where terminally ill patients in University of Nigeria Teaching Hospital (UNTH), Ituku/Ozalla kept asking about their chances of survival without receiving any response from healthcare providers until their demise. This poses a big problem because whatever these patients did not address until their demise will likely remain perpetually unaddressed.

The questions addressed by this study are therefore: (1) what type of prognostic information do healthcare providers communicate to terminally ill patients in the hospital? (2) who do communicate the prognostic information to the terminally ill patients in our locality? (3) what are the views and desire of terminally ill patients regarding communication of prognostic information with them by healthcare providers? There is, therefore, the need to elicit such information from the viewpoint of hospitalized terminally ill patients in UNTH, Ituku/Ozalla, hence this study.

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Purpose of the study

The purpose of this study is to investigate terminally ill patients’ perception on communication of prognostic information to them by healthcare providers.

Objectives of the study

Specifically, this study intends to:

(1)   determine the views of terminally ill patients on what healthcare providers communicated to them about their prognosis;

(2)   determine which of the healthcare providers that communicate prognostic information to terminally ill patients;

(3)   determine the condition under which healthcare providers communicate prognostic information to terminally ill patients;

(4)   ascertain terminally ill patients’ desire to have prognostic information communicated to them.

Research questions

1.      What is the views of terminally ill patients on what healthcare providers communicated to them about their prognosis?

2.      Who communicates prognostic information to terminally ill patients between the healthcare prov