ABSTRACT
This study investigated terminally ill patients’ opinion on communication of prognostic
information by healthcare providers. It specifically determined the views of terminally ill
patients on what healthcare providers communicated to them about their prognosis;
which of the healthcare providers that communicates prognostic information to terminally
ill patients; the condition under which healthcare providers communicate prognostic
information to terminally ill patients and ascertained terminally ill patients desire to have
prognostic information communicated to them. Utilizing a descriptive qualitative design,
data were generated using a semi-structured interview guide and audio tape recorder, and
simultaneously analyzed until data saturation point. Data was generated from 15 patients,
3 males and 12 females, who met the inclusion criteria. 7 major themes and 26 subthemes
that emerged from the analysis showed that most healthcare providers do not tell
terminally ill patients their prognosis; most prognostic information was communicated
with high optimism; terminally ill patients tend to firmly believe God’s miracle for cure
despite their life-ending prognoses; healthcare providers communicate prognosis to
terminally ill patients ineffectively; doctors mostly communicate prognosis to terminally
ill patients; healthcare providers mainly communicate prognosis early, in the presence of
other people, in the clinic; and most terminally ill patients desire to have their prognoses
communicated to them and their relatives. From the above findings, it is clear that there
exists poor prognostic information communication approach by healthcare providers and
the desire of terminally ill patients regarding prognostic information communication vary
considerably. The implication, therefore, is that if not addressed, terminally ill patients in
our locality may keep being faced with the problem of taking regrettable uniformed
decisions about their condition. It is recommended that healthcare providers should
receive further training for more effective individualized prognostic information
communication to terminally ill patients in our locality.

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;
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,
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
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.
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 providers?
3. What is the condition under which healthcare providers communicate prognostic
information to terminally ill patients?
4. Do terminally ill patients desire to have prognostic information communicated to
them?
Significance of the study
This study is of much significance as the findings will enable healthcare providers
know what the patients do understand about the prognostic information being
communicated to them. This will expose some informational gaps between what the
healthcare providers intended to communicate and what the patients understood from the
communication. Healthcare providers will, as a result, improve on their prognostic
communication skills to achieve effective communication of prognosis to terminally ill
patients.
Findings from the study will also help us find out if healthcare providers, in our
locality, need further training on prognostic information communication or not.
Additionally, the study will provide useful information to the healthcare providers
on how best to satisfactorily communicate prognosis to terminally ill patients entrusted to
their care in our locality (Enugu State, Nigeria and, indeed, Africa).
The study will also add to the existing literature related to prognostic information
communication and will finally stimulate further research in the subject area.
Scope of the study
This study is delimited to hospitalized patients with advanced stage of AIDS,
Chronic Liver Disease (CLD), Congestive Cardiac Failure (CCF) and Cancer, who are
within 18 years and above in UNTH, Ituku/Ozalla, Enugu State. The study focused on the
views of terminally ill patients on what healthcare providers communicated to them about
their prognosis, which of the healthcare providers that communicates prognostic
information to terminally ill patients, the condition under which healthcare providers
communicate prognostic information to terminally ill patients and the terminally ill
patients’ desire to have prognostic information communicated to them.
Operational definition of terms
1. Healthcare providers. In this work, they are the Doctors and Nurses working in
Oncology, Male Medical, Female Medical and Female Surgical Wards of UNTH,
Ituku/Ozalla.
2. Perception of terminally ill patient. Opinion and wish of a terminally ill patient
concerning communication of prognostic information.
3. Prognostic information. Facts about how many days, weeks, months or years a
patient may live before dying of advanced stage of AIDS, CLD, CCF or Cancer.
4. Communication of prognostic information. Exchange of facts between
healthcare providers and patients who are diagnosed of advanced stage of AIDS,
CLD, CCF or Cancer and/or their relatives about how many days, weeks, or
months the patients will live before dying of the illness(es).
5. Terminally ill patient. A patient within the age of 18 years and above who is
confined to bed due to diagnosed illness of AIDS, CLD, CCF or Stage 3 and
above Cancer.
6. Condition under which healthcare providers communicate prognostic
information to terminally ill patients. Whether on request by terminally ill
patients or on routine basis, the setting, people involved, how and when
healthcare providers communicate prognostic information to terminally ill
patients.