LIVED EXPERIENCE OF PALLIATIVE
CARE AMONG TERMINAL STAGE
CANCER PATIENTS IN MAURITIUS:
A PHENOMENOLOGICAL STUDY
by
Dr Suleiman Rachid PEERAULLY
Project submitted in partial fulfilment for the
requirement of the
Master of Public Health
DEPARTMENT OF MEDICINE
FACULTY OF SCIENCE
UNIVERSITY OF MAURITIUS
AUGUST 2017
TABLE OF CONTENTS
ACKNOWLEDGEMENTS
iv
PROJECT/DISSERTATION DECLARATION FORM
v
ABSTRACT
vi
LIST OF ABBREVIATIONS
viii
CHAPTER 1: INTRODUCTION
1
1.1 World Cancer Status
1
1.2 Cancer in developing countries
2
1.3 Cancer in Mauritius
2
1.4 Palliative Care
3
CHAPTER 2: LITERATURE REVIEW
7
2.1 Lack of knowledge about Palliative Care
7
2.2 Patients' experience and needs
8
2.3 In patient, Day Care and Home based Palliative Care
13
2.4 Role of family
14
CHAPTER 3: RESEARCH METHODOLOGY
16
3.1 Study Design
16
3.2 Ethical Clearance
16
3.3 Participant Selection
16
3.4 Data Gathering
17
i
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 4: FINDINGS
19
4.1 Data Analysis
19
4.2 Rigour and accountability
19
4.3 Results
20
4.4 Key Themes
20
4.5 Poor communication by physicians
21
4.6 Supportive environment
24
4.7 Changing social roles
26
4.8 Feeling stigmatised
28
4.9 Fear of pain, suffering and death
30
4.10 Personalised care
31
4.11 Reliance on spirituality
32
CHAPTER 5: DISCUSSION & RECOMMENDATIONS
34
5.1 Discussion
34
5.2 Recommendations
36
5.3 Strengths and Limitations
38
CHAPTER 6: CONCLUSION
39
REFERENCES
41
APPENDICES
47
APPENDIX 1 - Word Count
47
APPENDIX 2.1 - Project Proposal
48
ii
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDIX 2.2 - Research Proposal
49
APPENDIX 3 - Ethical Clearance
59
APPENDIX 4 - Progress Log
60
iii
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
ACKNOWLEDGEMENTS
To begin with, I thank God, The Most Gracious, in whom I find support,
strength and inspiration.
The completion of this thesis has been possible, not only by my
personal effort, but also by the contribution of several persons.
I would like to thank my Mum, Dad, sister and brother in law for their
love, affection, motivation and understanding all throughout this
challenging task.
My heartfelt gratitude also goes to my supervisor, Dr Chan Sun Marie
France for having accepted to coach me throughout this challenging
task.
Last but not the least I would like to thank the Mrs Chantal Tyack, all
the staff of Clos de L'esperance and all the patients who accepted to
participate in this study.
Thanks to all
Suleiman Peeraully
iv
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
UNIVERSITY OF MAURITIUS
PROJECT/DISSERTATION DECLARATION FORM
Name:
PEERAULLY Suleiman Rachid
Student ID:
1620651
Programme of Studies:
Master of Public Health
Module Code/Name:
MED 6000(1)/ Research project
Title of Project/Dissertation: Lived experience of palliative care among terminal stage cancer patients
in Mauritius: A Phenomenological Study
Name of Supervisor(s):
Dr Chan Sun Marie France
Declaration:
In accordance with the appropriate regulations, I hereby submit the above dissertation for
examination and I
declare that:
(i)
I have read and understood the sections on Plagiarism and Fabrication and Falsification of
Results found in the University’s “General Information to Students” Handbook
(20…./20….) and certify that the dissertation embodies the results of my own work.
(ii)
I have no objection to submit a soft copy of my dissertation through the Turnitin Platform.
I confirm that the hard copies and soft copies, including the one uploaded through the
Turnitin Platform, in the final assignment submission link indicated by the Programme/Project
Coordinator, are identical in content.
(iii)
I have adhered to the ‘Harvard system of referencing’ or a system acceptable as per “The
University of Mauritius Referencing Guide” for referencing, quotations and citations in my
dissertation. Each contribution to, and quotation in my dissertation from the work of other
people has been attributed, and has been cited and referenced.
(iv) I have not allowed and will not allow anyone to copy my work with the intention of passing it
off as his or her own work.
(v)
I am aware that I may have to forfeit the certificate/diploma/degree in the event that plagiarism
has been detected after the award.
(vi)
Notwithstanding the supervision provided to me by the University of Mauritius, I warrant
that any alleged act(s) of plagiarism during my stay as registered student of the
University of Mauritius is entirely my own responsibility and the University of Mauritius
and/or its employees shall under no circumstances whatsoever be under any liability of any
kind in respect of the aforesaid act(s) of plagiarism.
Date: 31/08/2017
Signature:
v
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
ABSTRACT
BACKGROUND:
Palliative care is a vital component of cancer treatment. Along with alleviating
physical symptom, especially pain, psychosocial and supportive services have
become increasingly important in the management of terminally ill patients in order
to improve their quality of life.
OBJECTIVES:
The study aimed at identifying the needs of terminal stage cancer patients
undergoing palliative treatment as well as to capture the psychosocial aspect of
living with a cancer at a terminal stage.
METHODOLOGY:
A qualitative phenomenological study was conducted on a sample of patients
(n=17) receiving palliative care at a palliative day care centre in Mauritius.
Interviews consisted of open ended questions about the lived experience of
terminally ill cancer patients.
SCOPE OF PROJECT:
Since there is no existing qualitative study on the lived experience of terminal
stage cancer patients receiving palliative care in Mauritius, obtaining feedback
from these patients about their experiences is important and can guide practice,
policy reforms and future research.
MAIN FINDINGS AND RESULTS:
The themes which emerged revealed how terminally ill cancer patients suffered
because of poor communication by their physicians, their changing social roles
and stigma towards them. Fear of pain, uncertainty about course of disease prior
to death was found to be a major source of distress. Supportive environment of
palliative care centres and personalised care they received improved their quality
vi
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
of life in spite of the difficulties they faced as their disease progressed..The
participants related how they found strength and hope in spirituality.
CONCLUSION AND RECOMMENDATIONS:
The study showed the importance of integrating palliative care services in the
standard oncology care to increase patient's satisfaction and quality of life.
vii
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
LIST OF ABBREVIATIONS
EAPC: European Association for Palliative Care
GAPC: Global Atlas of Palliative Care
UN
: United Nations
WHO : World Health Organisation
WPA : World Palliative Alliance
viii
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 1 – INTRODUCTION
1.1 WORLD CANCER STATUS
Cancer is among the major causes of mortality and morbidity across the world,
second only to cardiovascular diseases in most countries. In response to such a
growing burden of cancer, the WHO set up the International Agency for Research
on Cancer (IARC) to monitor the epidemiology of cancer worldwide. In 2003, 5.3
million men and 4.7 million women were believed to be likely to develop a
malignant tumour annually with 6.2 million dying from the disease. In 2014 the
figures have rose to 14.1 million new cases and 8.2 million deaths (IARC, WHO
press 2015).
This has a huge economic impact on the world. In 2010, approximately $1.16
trillion had been spent on cancer. This figure includes all the direct costs due to
preventive and curative aspect of cancer like screening programmes' surgery,
radiotherapy and chemotherapy. Death and disability due to cancer were also
taken into account. However it does not give an accurate picture of the problem as
high income countries spend much more than middle and low income countries on
cancer control though the latter have been facing a significant increase in the
incidence of cancer in the past years (Lopes G. 2015).
Socio-economic factors have a significant impact on the incidence of cancer. Age
standardised incidence rates of 27 types of cancer were assessed by four levels of
Human Development Index, which takes into account life expectancy, education
and gross national income. It was found that the Human Development Index
correlated with overall cancer incidence and each type of cancer (except for
cervical cancer, pharyngeal cancer and Kaposi sarcoma) (Miranda F. et al, 2016).
By year 2030, 27 million new cases of cancer, 17 million deaths related to cancer
and 75 million people living with the disease are expected worldwide.
1
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
1.2 CANCER IN DEVELOPING COUNTRIES
Developing countries have been disproportionately affected by increasing cancer
trends because of taking up of unhealthy western lifestyles, sedentary way of living,
heavy intake of food with high caloric value and higher incidence of cancers
secondary to infectious agents such as Human Papilloma Virus and Hepatitis B.
(Ahmedin J., et al 2010).
As per the United Nations Population predictions, the population of Africa is
expected to increase by 50% overall and by 90% for those aged more than 60, the
age at which cancer occurs more frequently (United Nations Population Division,
World Population Prospects, the 2008 revision).
Despite this ever increasing cancer burden, cancer is still not considered as a
major public health problem in Africa. This is mainly because of limited resources
which have to be shared in addressing other public health matters such as HIV,
malaria and tuberculosis. It may also be because of a lack of cognizance among
policy makers, the general public and public health authorities of the importance of
current and future cancer burden.
1.3 CANCER IN MAURITIUS
In Mauritius there were 1100 cancer related deaths in 2014, as per latest data
available, and a 70% increase in new cases is expected over the next 2 decades
(WHO Cancer Country Profiles 2014 Mauritius).
Cancer is in Mauritius, like in many other countries, still a stigmatised illness which
is believed to cause great suffering and ultimately leads to a painful death. It has
been found that only about 50% of patients discuss their disease openly with their
families while some still avoid the word ‘cancer’ and refer to their disease as a
“growth” or “lump”, or the “bad disease” (Manraj s, et al, 2016).
2
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Chemotherapy drugs as well as opioid analgesics are provided free of charge by
government hospitals but psychological support for cancer patients is largely
overlooked. Prevalence of psychological distress by cancer has been found to be
about 35% and varies with prognosis and cancer site. It is vital to provide early
intervention so as to optimise quality of care (Zabora J. et al 2001).
1.4 PALLIATIVE CARE
Palliative care is an approach that improves the quality of life of patients and their
families facing problem associated with life threatening illnesses. This includes the
prevention and relief of pain and other problems, physical, psychosocial and
spiritual (WHO 2017 definition of palliative care).
While much emphasis is being laid on diagnosis and treatment to reduce the
cancer burden, palliative care is slowly being recognised as a very important
component of care of cancer patients. A rise in the incidence of chronic
degenerative diseases has triggered the need to replace the objective biomedical
model by the bio-psycho-social model where patients are considered holistically.
Doctor Avedis Donabedian, a pioneer in improving quality in healthcare highlighted
many shortcomings in the care of terminally ill patients from his own experience as
a prostate cancer patient. He noted several examples of lack of coordination,
delays and inefficient delivery of healthcare services. He was particularly critical of
his care providers who were focussed only on his disease but not interested in his
personal story and suffering (Mullan F. 2001).
It was Cicely Saunders, who, in the late 1960's, started working on ‘end of life’
care skills for patients with cancer. In the 1970's palliative care began to evolve as
a separate sub speciality which catered for the physical, social, psychological and
spiritual support of terminally ill patients. Since that time palliative care has been
3
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
closely associated with oncology though it has been developed in many other
settings (David C. 2007).
According to the World Health Organisation 80% of cancer patients need palliative
care and at least 80% of persons who died as a result of cancer and other life
threatening diseases could benefit from palliative care (World Health Organization
(2007) Cancer control: palliative care. WHO guide for effective programmes).
The Global Atlas of Palliative Care (GAPC) was developed by the World Palliative
Care Alliance (WPAW) and the WHO in 2014 in order to assess the need for and
actual availability of palliative across the world. Upon completion of the report, only
20 countries had achieved an advanced level of integration of palliative care in
their standard health care system (Connor, S. et al. 2015).
Palliative care is intended to be complimentary to medical care and aims at
improving patient outcomes and reducing cost of treatment. It does in no way
compete with medical treatment (Higginson L. et al 2010).
It is generally recognised that the setting up of proper palliative care services is
one of the measures most likely to have positive impacts both clinically and
economically, among others such as tobacco control, early detection and creation
of cancer registries. A timely and holistic care of terminally ill patients can avoid
unnecessary and expensive medical services, especially hospital admissions and
make care more appropriate and less expensive (Lopes G. 2015).
The UN interagency task force on the prevention of non-communicable diseases
has included the planning and development of palliative and survivorship care in
its global action plan 2013-2020 (Global action plan for the prevention and control
of NCDs 2013-2020).
4
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
By the year 2025, the apprehension that more people worldwide will die from
chronic or progressive diseases rather than acute conditions underlines the
importance of health professionals to develop better ways of caring for such
patients (Davis RM, et al. 1999).
Throughout the world specialist palliative care services have grown, though not in
all countries. The key challenges to the development of palliative care have been
the lack of awareness of patients' needs when their health situation deteriorates
(for example elderly, HIV, dialysis patients) and ignorance of benefits associated
with palliative care (EAPC Task Force on the development of Palliative Care in
Europe).
Patient knowledge of health services also drives utilisation and many patients and
a vast majority of lay persons do not know about palliative care (Koffman J. et al
2007).
In 2012, Thomas Lynch et al found that 136 out of 234 countries in the world (58%)
had at least one palliative care service. However, only 20 countries (8.5%)
managed to achieve an advanced integration of palliative care in their health
service provision (Thomas L. et al 2013).
Thus globally development of palliative care is unequal and more effort is needed
to make such services more accessible worldwide.
In sub Saharan Africa, home and community based palliative care has been found
to be very effective in improving quality of cancer and HIV care but is hampered by
lack of funding and resources (Harding R. 2005). Difficult access to basic pain
killers like opioids continues to make the life and death of people living with cancer
in Africa a very difficult experience.
5
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
In Mauritius, palliative care is still a new concept in the health sector and is mainly
related to oncology. Though there are no official statistics on patients receiving
palliative care in Mauritius, this is expected to rise in the years to come due to
earlier detection and improved treatment methods increasing the life expectancy of
cancer patients.
There are no national palliative care policies in Mauritius and local provision for
psychosocial support exist mostly thanks to individual or non-governmental
organisations initiatives. There is a significant gap between the delivery of
palliative services here and the UK which ranked first in the 2015 Quality of Death
Index. This was due to strong national policies, maximum integration of palliative
care in the National Health Service, and community engagement (Line D. 2015).
One important observation is that medical treatment is meant to increase the
survival rates, but the quality of that survival depends on the psychological support
offered to the patients.
6
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 2 – LITERATURE REVIEW
A literature review revealed no previous studies carried out on palliative care in
Mauritius, especially from the patients' point of view. The following studies
provided insights into some aspects of patient experience with more emphasis on
feelings, psychology and spiritual needs rather than physical symptoms.
2.1 LACK OF KNOWLEDGE ABOUT PALLIATIVE CARE
Patients with cancer often have negative beliefs about palliative care associating it
with death which tends to cause fear and reluctance towards it. These are still
common even among those who admit having benefited from it. The effect of this
stigma related to palliative care was revealed in a qualitative study in which
participants were selected from a group of patients who got access to early
palliative care and a second group who had only standard care for patients with
advanced cancer. It seems that the term itself carries a stigma for which patients
blame the lack of information and explanation from health care professionals
(Zimmermann et al, 2016).
A survey conducted in the USA showed that only 24% Americans were acquainted
with the term palliative care compared to 86% who were had heard the term
hospice care before (The Regence Foundation, 2011).
Similarly a qualitative study in Ireland, involving health and social care
professionals described ‘palliative care’ as ‘terminal care’ (McIlfatrick S, et al 2014)
prompting palliative caregivers to think about renaming such terminology as
‘supportive care’.
In a survey conducted among medical oncologists and mid-level providers at a
standard cancer centre in the USA, it was found that the term palliative care was
perceived as more distressing to them, their patients and patients' families and
7
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
was thus a barrier to referral. On the other hand, supportive care evoked more
positive feelings among all those concerned (Fadul N. et al, 2009). According to
the authors, these findings would not be relevant in countries where palliative care
is commonly offered to those needing it and delivered in the mainstream
healthcare system.
Though palliative care is meant to be offered throughout the course of a serious
illness, most patients never get access to it or receive it too late during their illness
for it to have the desired benefits (Gidwani R. et al; 2016). Patients who have little
knowledge about palliative care are not able to make fully informed treatment
decisions and tend to refuse palliative care especially when they are still interested
in curative treatment (Maciasz R. et al; 2013).
End of life care is a challenging topic to discuss with patients that even doctors
admit having difficulties and feel unprepared for this in a phenomenological study
on the initiation of home based palliative care in France. The doctors participating
in the study felt that offering palliative care and meeting end of life wishes of
patients were a moral obligation for them. They described it as their duty as a
human being rather than as a healthcare professional. However shifting from their
disease centred, curative focus to a patient centred focus was not very easy for
them to handle alone. They recommended the setting up of multi professional
teams which would be more trained and ready to meet the complex exigencies of
dying patients (Engberink, A. O. et al. 2017)
2.2 PATIENTS' EXPERIENCE AND NEEDS
Understanding patients' experience is of paramount importance to improve service
utilisation and improve quality of care. There is increasing evidence showing that
early specialised palliative care has a positive impact on the quality of life,
improves patients' satisfaction and alleviate symptom burden compared to
standard oncology care alone (Bakitas M. et al, 2009).
8
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
In the quest of understanding the views of patients receiving palliative care as in
patient in a hospice, Arnold carried out a mixed methods study which included
phenomenological approach in the analysis of participants’ narrations to discover
their lived experience. Quantitative method was used to grade the emerging
themes according to the importance the patients attached to them. The latter
reported their end of life needs were time, social needs, physiological needs which
is mainly due to bodily changes and pain relief, death and dying, safety, role of
spirituality and finally adaptation to changes (Arnold, B. L. 2011).
A meta analysis conducted by Rasmussen et al in 2010, on experiences of living
with a deteriorating body in late palliative phases of cancer concluded that while
much research has been done on symptoms of cancer patients in late palliative
phases, knowledge about the life experience of these people as death approaches
is very limited (Rasmussen B. et al; 2010).
Chronic debilitating diseases not only affect patients physically but also in all
aspects of life as they can no longer perform daily routines, lead a normal life and
carry out important roles they used to (Chochinov HM, et al. 2009).
Previous researches have been mainly focused on symptoms and problems of
cancer patients but knowledge of their lived experience as palliative care patients
and how their dignity suffers along with their physical problems is still very limited.
Understanding the personal meanings of the physical symptoms to the patients is
important to develop optimal supportive care (Teunissen SC, et al. 2007).
Patients' will to live or die has been shown to be influenced by three factors;
namely physical distress like pain or shortness of breath, psychological
(depression and suicidal thoughts) and existential issues like being a burden to
their family or loss of dignity (Chochinov HM, et al 2005).
9
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
In a mixed study, Marcello Tamburini et al assessed cancer patients' needs during
hospitalisation. The quantitative part consisted of a questionnaire assessing thirty
five items like information concerning diagnosis, prognosis and treatment options.
The qualitative part was carried out by means of semi structured interviews to find
out the meanings of the needs to individual patients. The study showed that the
needs most frequently expressed by participants were information relating to
diagnosis, future condition and better dialogue with clinicians. Participants
demanded more sincerity, politeness and more time to communicate with their
treating doctor (Tamburini M. et al; 2003).
Breffni et al conducted a grounded theory study which compared the views of
patients who received early palliative care, which consisted of a multidisciplinary
team assessing their physical, psychosocial and spiritual needs, with those who
had access to standard oncology care only. According to the author, quantitative
measures for quality of life are not the most appropriate methods to capture all
aspects of individual patient's experience, hence the need for such a study.
Major themes which emerged from this study were:

Prompt, personalised symptom management;

Holistic support of patients;

Guidance in decision making; and

Preparation for the future.
Patients particularly liked the personal support and the fact that they were always
listened to and appreciated that people are interested in how they felt. They
described palliative care as a safety net and felt more at ease with their disease
(Breffni H. et al 2017).
Temel et al conducted a randomised control study in 151 patients diagnosed with
metastatic lung cancer where they were randomly assigned to either standard
oncology care or to oncology care along with early palliative care. They found that
those who benefited from early palliative had significantly higher quality of life
scores, lesser depressive symptoms and lived longer. The longer survival could be
10
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
explained by the fact that those who got access to palliative care understood their
prognosis and incurability better and were thus subjected to less aggressive end of
life treatment (Temel et al 2010)
Existential issues of cancer patients facing imminent death were explored in a
phenomenological study using narrative interviews. It was found that there are several
factors which caused a cancer patient to feel uncertain about his future. The most
important were the changes to their body caused by the disease and incapacity to carry
out daily routines. Participants also reported feeling vulnerable in healthcare settings
where at times they did not know what to expect on a particular visit, making it a
frightening experience. Relief from these uncertainties were obtained from being
surrounded and loved by close ones making the patients still feel meaningful. They also
found comfort in carrying out activities in the natural environment such as walking or
cycling in a nature park(Karlsson, M. et al. 2014)
The uncertainty faced by terminally ill cancer patients, from the time of diagnosis
to admission in a palliative care unit, was studied in another phenomenological
study. Roz Mckecheni et al found that the patients faced uncertainty in:

the course of their illness and symptoms;

side effects of medications and how their body changed during their
disease; and

changing social roles, especially in relation to their family and work.
For similar reasons and uncertainties, no participant of this study wished to be
admitted in a palliative care unit early in their disease. They all wanted to
postpone it as long as possible. However access to palliative care made the
participants feel supported and know that their death would be a comfortable one
in a palliative care unit (Mckechnie R. et al 2008).
Admission in a palliative care unit was found to be of major importance for
terminally ill patients among factors which enhanced their sense of comfort as their
illness progressed. This made them feel considerably much better along with hope
11
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
for recovery, acceptance of vulnerability and openness to spirituality (Coelho, A. et
al. 2016).
Wentlandt et al studied aspects of care with which patients were satisfied and
found helpful in palliative care. Qualitative interviews were used to explore the
lives of those receiving palliative care. Communication emerged as the most
important theme and was further subdivided into several sub themes like building
a good doctor patient rapport, addressing expectations, keeping patients and
families well informed about prognosis, active listening and talking about death in
order to mentally prepare the patient and his loved ones in advance. Participants
expressed their appreciation to personalised care, support within the family,
consistency in the care-giving process and a supportive environment with a good
balance between privacy and a sense of community among patients (Wentlandt et
al, 2016).
A qualitative study aimed at determining the effect of how people living with
advanced stage cancer on were viewed and treated by others. The former
revealed their preference for compassion as compared to empathy. It was also
found that the patients disliked pity showed towards them. Empathy was described
as an attempt to understand the patients' suffering while compassion involved love
for the person. According to the respondents, these were constructive emotions
and helped to alleviate their pain in the last stage of life. On the contrary,
sympathy was unwanted and felt by the patients as a way of looking down upon
them by observers (Sinclair et al, 2016).
Proper case management, communication and coordination between providers of
care and patients, skill development and ability to respond to changing patients'
needs as their disease progressed were identified as the key elements of effective
palliative care (Luckett et al, 2014).
12
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
2.3 IN PATIENT, DAY CARE AND HOME BASED PALLIATIVE CARE
The experience of cancer patients receiving palliative care in different settings;
namely at home, at a palliative day care centre and in hospital were studied in a
phenomenological study by Ellingsen S. et al. Participants described hospital as a
safe environment but complained that it is a too busy place and felt ignored by the
hospital staff who seem to be always in a hurry. Those who were interviewed at
home enjoyed the comfort of their residence but found it tedious and tiring.
Patients receiving care at the palliative care centre were the ones who were the
most satisfied with the quality of care. The supportive environment helped them
find hope and desire to live in the time they had left. Thus the study concluded that
palliative care centres offer the best experience of care in terms of safety and
psychosocial support for cancer patients (Ellingsen. S. et al 2014).
While some patients feel safer in a specialised palliative care unit where they are
cared for by fully trained professionals, some still prefer the comfort of their own
house. Home based care allows them to cherish memories of their private property
and presence of family is essential to prevent loneliness. They do not feel
completely cut off from daily routines despite being aware of the burden they are
imposing on family members through increased responsibility (Appelin G. et al
2004).
The role of hospitals as a place of delivery of supportive care has been questioned
and found to be out of favour as evidenced by an exploratory review of
international palliative care policy. Palliative care policies of different countries
were analysed and recurring themes were identified. It was found that these were
designed to meet the needs of the population as much as possible. While
improvement of quality of care at hospital level was an important point,, care of the
terminally ill was directed at minimising hospital admissions and encouraging
death at home (Robinson, J. et al. 2016).
13
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Brumley et al studied 238 home-bound terminally ill patients, dividing them
randomly into two groups; one receiving usual care and the second receiving inhome palliative care along with their usual care. The in-home palliative care team
consisted of a physician, a nurse and a social worker who were responsible for
medical care, discussing expected outcomes and explaining the course of the
disease to the patients. Though survival was same in both groups, patient
satisfaction was much better in the in-home palliative care group, cost of care was
lower and no harm was noted (Brumley et al 2007).
Difference in outcome of terminal stage pancreatic cancer patients being cared for
at an in-patient palliative care centre were compared to those admitted in a
general hospital. The findings were much in favour of the palliative care centre
where patients had more liberal access to painkillers, were admitted for a shorter
time and were subjected to less aggressive interventions. The cost of treatment
was also found to be much lower (Wang, J. P. et al. 2016).
2.4 ROLE OF FAMILY
The family unit has been found to be an important tool in promoting palliative care
particularly in terms of information sharing and planning of care. Family may not
be restricted to kinship but can include those closest to the patient. A good way of
working with family members of terminally ill patients has been devised by Murphy.
It essentially consists of family gatherings whereby the dying member relates his
story, fears, worries and memories to other members. The latter actively listen and
support the person sharing his lived experience. The meeting is then closed by a
blessing, thus incorporating spiritual care with the psychosocial support without
any specific form of religiosity (Murphy HM, 1999).
A phenomenological study exploring the impact of Murphy's family meeting model
concluded that this method of providing psychosocial and spiritual care has a
strongly positive impact on the dying person's well being but its application may
14
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
differ in culturally different groups. Among the themes which emerged were
appreciation of the opportunity to share joy and happy memories, spiritual reorientation, feeling of reassurance, calmness and support. The patients' family
members also found this kind of meeting useful and seized the opportunity to
reconnect and strengthen family ties with members who they have not met for long
(Tan, H. M. et al. 2011).
15
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 3: RESEARCH METHODOLOGY
3.1 STUDY DESIGN:
A phenomenological approach was used for the study. Data was collected through
one to one interviews and analysed using descriptive phenomenological method
developed by Giorgi. Phenomenology is a qualitative type of study initially put
forward by Husserl in the 20th century aiming at gaining knowledge of people's
experiences of their everyday life (Giorgi A. 2012).
This method was chosen in order to gain insight into the descriptions of the lived
experience of cancer patients undergoing palliative care.
Phenomenology is the best fit for this study as it yields rich data reflecting the
essence of the participants' lived experience through their shared views in their
own words and takes into account cultural differences. It allows expression of the
interviewee's personal experience, feelings and thoughts which the interviewer
can freely explore as new themes emerge (Creswell 2014).
3.2 ETHICAL CLEARANCE
Ethical clearance was obtained from the Ethical Committee of the University of
Mauritius following submission of a research protocol.
3.3 PARTICIPANT SELECTION
Participants were selected from a day care centre specialised in palliative care
services for cancer patients. All interviews took place at the day care centre.
Inclusion criteria were; participants should be at least 18 years old, with no
features of cognitive impairment, able to give informed consent and not too ill or
16
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
dying imminently. Selected patients were aware of the poor prognosis of their
disease and were expected to live for about six months to one year by the medical
staff.
3.4 DATA GATHERING
Participants were explained the aim of the study and asked to each sign an
informed consent page. Participation was entirely voluntary and anonymity was
ensured. Each participant was interviewed once. The average duration of the
interviews was forty five minutes.
Face to face interviews were conducted privately, in a quiet room, between only
the researcher and participant. This enabled monitoring of non verbal cues and
clarification of ambiguous answers to obtain first-hand knowledge of the
participants' lived experience. Each interview was coded in order to keep the true
identity of each participant confidential, and ensured anonymity of narrations. The
informed consent forms and collected data were handled with utmost care and no
one except the researcher had access to them.
The participants were allowed to reveal their lived experience of undergoing
palliative care with minimal leading questions so as to avoid interviewer bias as far
as possible. They were encouraged to express themselves freely and elaborate on
areas of individual importance to them. An open ended question guide was used
with the following questions:

Please tell me about your experience as a cancer patient undergoing
palliative care here.

How do you feel about your status?
Tell me how did your roles and relationships in your family and at work
change?

Is there anything else you would like to tell me?
17
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
The interviews were audio-taped, transcribed verbatim and translated from Creole
to English. Strict measures were taken to ensure accuracy of the translations. The
data was analysed and major ideas were extracted as themes. Excerpts from the
interviews were used to support the emerging themes.
18
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 4: FINDINGS
4.1 DATA ANALYSIS
The interview transcripts were read to get the sense of the whole lived experience
of the participants. They were then read and analysed multiple times to identify
transition units of the experience which were then interpreted and elaborated.
These formed the building blocks of themes which emerged from the study. All
preconceived perceptions on the lived experience of patients undergoing palliative
care were bracketed out as far as possible to embrace the phenomenological
attitude. The revelatory themes were obtained after organising the data and
identifying similar ideas in the participants' descriptions. The themes or categories
were directly drawn from the participants' quotes to ensure they reflect the original
experience. Then the narrations of all the seventeen participants were compared
with each theme so as to identify patterns and make associations.
4.2 RIGOUR AND ACCOUNTABILITY
Rigorous reporting of data as per Rice and Ezzy was used in this
phenomenological study (Rice and Ezzy, 1999). According to them, the five main
areas of focus to maintain rigour are theoretical, procedural, interpretive,
evaluative and reflexive rigour.
The steps taken in this study to ensure maximum rigour were:

Appropriate choice of methodology and sample selection;

Good documentation of all procedural and interpretive processes; and

Respect of ethical issues.
19
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
4.3 RESULTS
Twenty women were approached with a view to participating in the study (given
that no suitable men were available during recruitment of participants) and given
an information sheet on the study. Three declined for personal reasons.
Nevertheless, saturation was reached after the seventeen interviews and no new
information was obtained thereafter.
Their age varied between 35 to 72 years old. All had been diagnosed with cancer,
namely breast, cervix, colon, endometrial and laryngeal carcinoma. They were all
married except for two who were divorced.
Their lived experience with cancer, as at the date of their respective interviews,
ranged from one year to five years. While only five of the participants were in
employment before getting sick, none of them were actually working at the time of
the interview.
4.4 KEY THEMES
Seven main themes were identified, namely:
1. Poor communication by physicians;
2. Supportive environment;
3. Changing social roles;
4. Feeling stigmatised;
5. Fear of pain, suffering and death;
6. Personalised care; and
7. Reliance on spirituality.
These themes portrayed the lived experience of terminal stage cancer patients
undergoing palliative care in Mauritius. Each respondent stressed on different
aspect of their experience according to the importance they attached to it and the
20
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
themes presented in this study are not in order of importance. They are illustrated
below with quotes from the interview transcripts.
4.5 POOR COMMUNICATION BY PHYSICIANS
Communication was described as one of the most important turning point of the
lives of the participants. Most participants were very dissatisfied with the
communication process at hospital, especially at the time of disclosure of their
diagnosis. Most of them received their diagnosis from surgeons or oncologists and
were often left disappointed with limited information or a too harsh way of breaking
the bad news. The latter were at times vague or
evasive. The exact words of the
doctors are often vividly remembered and had high impact on the morale and lives
of the patients. Clumsiness, lack of clear information on prognosis and
evasiveness from the part of doctors were commonly reported. This severely
affected the mental strength and will to fight the disease of the patients who
wanted to feel involved in the communication process.
In that context, Participants 3 and 7, who were interviewed for the current study,
had the following observations:
P3: “They speak to one another about the results of tests in such a
way that it gives the impression they do not want to communicate with
me at all, and that the information is more or less for their own internal
use.”
P7: “When the surgeon came, he did not talk to me, instead he asked
the swarm of young doctors with him about me. I heard someone
answering about me and they moved on, without even saying hello or
making eye contact.”
21
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Sometimes patients were not made fully aware of their condition or deliberately
hidden the truth. This is often done on purpose so that patients' psychology would
not be affected. However this affects the patients even more and damages the
trust they have in the medical team which is a sine qua non for developing a
rapport between doctors and patients.
This was the case for Participant 10:
P10: “He was rather reluctant to commit himself to what was wrong
with me. I would have sooner known right from the start and be done
with it and accept it.”
Information was not always conveyed in a way that patients and their family could
understand. Communication was less like dialogues but more like authoritative
lectures. This caused even more distress and anxiety, as evidenced by the
narrations of Participants 7 and 4:
P7: “I always met my doctor in a very formal context (the 'round') and
it was difficult for me to ask for explanations. He did not know how to
explain in layman's terms and seemed to speak in abbreviations.”
P4: “You sometimes feel as though you are a nuisance to them.”
While some preferred sincerity and clear information right from the beginning,
others would have liked more time to be ready to hear the news. Thus it is better
to assess readiness of the patients and their families to hear the truth. Many
expressed a need for hope and expressed their wish to wait for a miracle even in
terminal stages of their disease. To have that sense of hope dashed by a
healthcare professional was experienced negatively.
22
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Participants 8 and 10 particularly suffered from such early disclosure of
information and proposal to undergo palliative care:
P8: “I did not want to hear about palliative care at that moment. It
made me lose hope that the chemotherapy could do wonders for me.”
P10: “I thought they have given up on me and that I was going to die,
even though I knew I was going to die.”
Participants described their need for as accurate as possible prognostic
information especially shortly after confirmation of their diagnosis. Many were
unhappy about how this question was dealt with. Answers were often vague and
inaccurate with inconsistent results or evidence. As their disease progressed,
many patients became ambiguous in their need for information. They lose interest
in details and focus only on the present as illustrated by the declarations of
Participant 5, 8 and 9:
P5: “I asked how much time I had left and he said he could not tell
because he was not God. I did not care for that answer too much; I
just thought maybe he could be a little more specific. Sometimes it
seems the information is strictly for the medical staff and not for the
people.”
P8: “On one hand I would like to know my prognosis now. But I am
not so much interested any more. There is nothing more to know
anyway.”
P9: “What good does it do to know more at our stage? I feel more
concerned with the amount of pain and suffering I will feel as the end
nears. I am not fully sure how that will unfold.”
23
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Participants pointed out that quality of communication was much better with
healthcare professionals trained in palliative care. They presented information at a
rate which the patient could assimilate, allowed preservation of hope and were far
more compassionate and supportive.
Participant 12 praised the communication process at the palliative care centre as
compared to hospital:
P12: “This place is excellent. It could not be better communication
wise. I have had great support here.”
4.6 SUPPORTIVE ENVIRONMENT
Palliative care units were perceived by most participants as a place where they felt
relieved of the physical and mental stress associated with their disease. They
were particularly pleased with the sense of feeling at home with relative freedom
as compared to traditional hospital wards. The palliative care unit was also free of
the usual hassle of health centres but rather provided a peaceful and quiet
environment for the patients. Furthermore specialised palliative care units regroup
patients with more or less similar diagnoses and disease course. This allows them
to build relationships among themselves giving a sense of community to them.
Along with getting the opportunity to interact with fellow patients, the latter
highlighted their need to get some privacy at times.
The sense of togetherness in the course of their illness was expressed by
Participant 12 and 15:
P12: “The caring atmosphere here makes you feel good; you do not
dread to come here.”
24
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
P15: “You feel you are part of a little family, we meet new friends and
support each other.”
Participants constantly made comparisons with hospitals where they received only
medical treatment without any psychological support.
P12: “Here the staffs manage our symptoms and make us feel good
too.”
P15: “The way they welcome you here is fantastic, you feel at home
immediately. The staffs are always smiling and attentive to
everything.”
Even if palliative care units are meant to provide comfort to terminally ill patients, it
can unfortunately be a source of discomfort. Being a palliative care patient may
accentuate the feeling of helplessness especially due to lack of freedom. It can
make them more aware of their vulnerability and that the end is nearing for them.
Contrastingly and sadly, Participants 10, 13, and 14, did not have a very good
experience of palliative care:
P10: “To be comfortable is not to have any problem; it is to be at
home.”
P13: “Coming here reminds me of my disease, its progression and
death”
P14: “It feels like being in prison when you are admitted for a long
time.”
25
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
This may explain the preference of patients for palliative day care centres or home
based care rather than getting admitted for longer terms in palliative care units.
Admission to hospital with standard oncology care or with special facilities for
palliative care represented an entrapment in their disease for some participants.
One example is Participant 17:
P17: “Maybe I have been sent here to end my days in here.”
4.7 CHANGING SOCIAL ROLES
All the participants described increasing difficulty in the performance of their social
roles as their disease progressed. The way they fulfilled their roles as mothers,
grandmothers and wives was seriously affected by the disease and their failing
body. Though they tried to maintain their social responsibility as much as possible,
they gradually felt unable to carry on their daily routines as before. This resulted in
the development of a feeling of burdensome to their relatives who took over the
activities they usually did. The support they received from their family relieved their
stress but they also felt guilty for not being productive.
Participant 5 regretted her incapacity to completely fulfil her role as a mother
because of her cancer:
P5: “My youngest daughter was a teenager when my symptoms
started. I could not always be there for her; this made life much
harder for her.”
Some felt so much guilt for being dependent on their family members that they
stated they would have preferred hospice care.
For most of the participants their husband represented their major source of
psychological support and felt extremely thankful to them. They recognised the
26
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
strain their condition had put on their marriage. Some reported that their difficulties
strengthened their couples and their partners tried as hard as possible to please
them.
P15: “The support of my husband is worth gold.”
Alternatively for some the onset disease brought an end to their relationship and
infidelity. They attributed this to their inability to satisfy their partners' needs any
more. Couples were particularly affected in cases where the ladies were affected
by breast cancer. The latter caused body changes which impacted on their
sexuality and may led to them being abandoned by their partners.
P12; “My husband did not understand my suffering at all and
decided to go away.”
Children-parent relationships did not differ much with most of the participants
stating that their children increased contact with them and supported them
throughout their disease. They continued their care giving role as long as they
could at home, especially in making arrangements for the family to function without
them. They however grieved the fact that they missed many life events of their
children and grandchildren such as marriages, graduation and having babies.
Some felt the need to be alone at times instead of being constantly surrounded by
close ones. This feeling was much more common at early stages of their disease
where they needed time to think and come to terms with their diagnosis.
P14: “You are with people you love but sometimes you need quiet
time to cry and really let it go.”
27
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Poor health led the participants spending more time at home and less in the
society, with friends. Reduced social contact gave rise to feelings of loneliness and
sadness.
P8: “Sitting alone at home made me feel depressed.”
4.8 FEELING STIGMATISED
Some participants described how society started to look at them differently on
knowing their condition, making them to feel stigmatised. On one hand some
described people doubting their illness and questioning the severity of it. Rumours
on them feigning being sick spread as soon as they were seen in society. This led
them to refrain from going out and instead isolate themselves at home. They
avoided gardening or shopping fearing people will say they looked too healthy to
be ill.
P16: “It would be better if you had a broken arm, then it shows.”
On the other hand, some felt stigmatised because they felt they had to behave in a
certain way because of their disease. Their close ones did not allow them to
perform their daily routines because of frailty associated with cancer.
Overprotection made them feel weak, not normal and hurt their dignity. Sympathy
was repeatedly described as unwelcome despite often well intended from the part
of others. It had largely detrimental effect on the patients, leaving them
demoralised, depressed and feeling sorry for themselves. Participants 5 and 15
mentioned how they felt bad because of pity people were showing for them:
P5: “You feel this stamp on you; you cannot lead a normal life.”
P15: “Do not come and look like this is the last time you are seeing
me.”
28
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
The participants at times also faced shallow and superficial emotion, typically
expressed by individuals who wish to remain distant from the patients' situation.
Social isolation was also sadly due to some people thinking that cancer is
contagious. Some witnessed people who said cancer could be transmitted by
sharing food or just casual contact. One participant even admitted considering
suicide because she had doubts about whether her cancer was transmissible and
she thought her family would get it because of her.
Participants 3 and 10 revealed how this stigma affected them:
P3: “Once they know you have cancer, they do not behave normally.
They fear the disease will come to them.”
P10: “I suffered so much; I thought they should be separate from me;
I thought I should not live.”
Other participants described how they felt victim to stigma because of the
traditional belief that cancer is a form of divine punishment sent to people who
have sinned in the past. Some people saw them as bad people who are suffering
because of bad deeds in their current or past life. This general sense of cancer as
a punishment was noted mostly among less educated people.
Participants 8 and 12 related their unfortunate experience:
P8: “They say you got it because of karma or something wrong you
have done in the past.”
29
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
In some cases the whole family may be blamed, especially if more than one
member got affected by cancer. This usually happens in case of cancers affecting
people who have some genetic predispositions which may be hereditary.
P12: “People in our community say your family got cursed, that is why
this disease is getting in your family.”
4.9 FEAR OF PAIN, SUFFERING AND DEATH
Death is one of the most common things to which someone thinks of on hearing
the word cancer. Fear of death is ever present in terminally ill persons. This leads
to the latter forgetting about living their present time but instead live in the
expectancy of death. All the participants recall asking their doctor how much time
they had to live as the first question after being announced their diagnosis.
Evasiveness, conflicting information and refusal to answer from the part of health
care practitioners were particularly distressing to the patients.
Impending death, though very frightening, is often surpassed by fear of the
disease itself and the suffering which comes along. The worry of their ability to
cope with the symptoms, especially pain in the last stages of life was expressed by
all of the participants. Some even developed suicidal thoughts or regretted the
absence of legislation concerning euthanasia in Mauritius.
Participant 17 shared her distress because of unbearable symptoms:
P17: “I just want to be relieved, by any means. If it is killing me, I want
to end this fast, if it is not I want to be relieved.”
They all stated that control of these physical symptoms were intrinsic to the
development of supportive interventions for cancer patients. Some stressed more
on psychosocial suffering such as dependency, depression, loss of dignity,
30
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
meaning and purpose. They lamented the fact that most health professionals
placed greater emphasis on treating bodily suffering.
The participants revealed that the main reason for them to get admitted to hospital
was pain which is sometimes unbearable. However they all dreaded the possibility
of dying there. They all expressed the wish of benefiting from better planning of
palliative care services and of later dying peacefully at home. Thus admissions to
health centres were driven by pain rather than by choice.
4.10 PERSONALISED CARE
Participants showed great appreciation to the personalised management of
symptoms, especially non-physical ones. They were very thankful for being given
the right to make decisions about many problems they are likely to face during the
course of their illness.
P12: “They talk a lot about different things; not just about your care.
Things you can do at home to stay calmer, things you cannot get from
your doctor on a prescription.”
The Participants felt secure and relaxed in palliative care centres as compared to
hospitals where the healthcare professionals have many more patients to look
after and are focused only on treating symptoms at the expense of a holistic
approach. The comfort brought to patients by palliative care staff made them feel
reassured and even optimistic. It was the only place for some where they could
express their personal needs.
P8: “I feel free to say anything to the staff here. My husband is very
good at listening to me but sometimes I feel he does not want to
constantly hear about my health.”
31
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
4.11 RELIANCE ON SPIRITUALITY
Spiritual care forms part of palliative care and high quality palliative care promotes
spiritual care giving at the end of life. Spiritual end of life care such as pastoral
care with last sacraments or other last rites are commonly provided at palliative
care units. These are perceived as a very important which the patients value
dearly while waiting for their turn. They feel this aspect of palliative should not be
missed as part of preparation for their death and is the reason some prefer
facilities with strong religious affiliations.
Some participants expressed their anger towards God initially at the time of
diagnosis. They could not accept their disease and wondered why God had sent
this to them. This feeling was short lived in some but acceptance took as long as
one year for others.
Relation with God was associated with hope and the firm belief that God's plan for
them was the best resulting in acceptance of their condition. The “Why me?”
questions were replaced gradually by “It is God's will.”
P15: “It is God who comforts me. He is my saviour.”
However most of the participants had an increased openness to spirituality since
the time they knew they had an incurable cancer. This can be attributed mostly to
the fact that they are confronted with their own vulnerability which strengthen their
belief that God directs the destiny of those who believe. Having lost hope in
medical treatment, some still keep hope in God's miracles.
P9: “I have cancer. Can you remove it unless God does a miracle?”
Spiritual fellowship also gave a sense of belonging to the patients. They described
it as an important source of consolation and courage which gave them strength.
32
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
They said that it allowed them to forget about worries and negative thoughts. They
developed the ability to focus on good moments and fight for extension of life.
33
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 5: DISCUSSION & RECOMMENDATIONS
5.1 DISCUSSION
From the findings of this study we found out the importance terminally ill patients
attach to communication with healthcare personnel. They have particularly vivid
memories of the most life changing conversations they have had with their treating
doctors and any mishaps caused much distress. Disclosure of information should
also be well timed and done according to readiness of the patient as different
patient have different needs and react differently to the bad news.
Participants also narrated how they valued politeness, explanations in simple
layman's terms and accurate information with no 'beating around the bush' by their
doctors.
Majority of the participants showed appreciation for the welcoming and peaceful
environment of palliative care units in contrast to busy public hospitals. Living
among others, who are in the same situation, lead to the development of a sense
of community. They supported each other, especially in hard times as no one
understands their hardships better than themselves. However they expressed the
need for some time alone or at home with their family and desire to live their last
days surrounded by their loved ones. They preferred day care palliative centres or
home based palliative care far more than hospice care.
Family support was a central part of the participants’ narrations. The persons they
most relied on were their spouse and children. The absence of support from
closed ones or the separation following illness, were seen to cause much
depression and affected the patients' will to live.
Missing important life events of their children and inability to accompany them
during their transition to adulthood caused much regret. They grew frustrated as
34
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
they realised how much they became dependent on others and could not give
much in return as a result of their disease. They found it very difficult to give up
their roles in homes and tried to carry on with daily routines as long as their failing
body could allow them to.
Being constantly surrounded by family and close friends coming to visit them was
sometimes not welcome by those suffering from incurable cancer. They felt
everyone was coming to see them as though it was the last time they were seeing
each other. This negatively affected their will to live and enjoy the present as much
as they could by reminding them of impending death. They were all grateful for
compassion people had for them because of their cancer but disliked pity some
showed towards them. Stigma related to their disease like traditional beliefs that it
could be a form of punishment from God for past bad deeds hurt the patients a lot
and shows that people should be better educated about cancer.
As soon as they were informed they would need palliative care, the participants
thought of death and much suffering in their last stages. The main reason for this
fear was lack of awareness about palliative care and how it could benefit them.
This fear unfortunately prevented them to make the most of time left to them. They
were not properly reassured that terminal stage cancer symptoms, most
importantly pain associated to it, could be adequately controlled. They admitted
that uncertainty about whether they would be able to control their pain was the
main reason they went to hospital and that better pain symptom control at home
itself would avoid them unnecessary hospital visits.
Participants revealed their reliance on spirituality as a source of strength,
acceptance and hope. Though some of them were initially angry at God for making
them experience such difficulties, this gradually changed as they came to terms
with their diagnosis and prognosis. They all reported getting closer to God, looking
for courage and solace, as they lost hope in medical treatment. Some even kept
35
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
faith in divine miracles by which they could be completely cured of their cancer,
keeping their moral up till their last breath.
The respondents also described how specialised palliative care made them feel
more relaxed and secure. Personalised care was the main reason for this whereby
each patient felt free to talk about their personal problems and apprehensions.
They felt free to tell the carers about things they even did not talk to their family.
These findings are consistent with those of similar studies mentioned in the
literature.
5.2 RECOMMENDATIONS
Health services in Mauritius are among the best and most up to date in sub
Saharan Africa but are yet to develop clear national policies on palliative care for
terminally ill cancer patient.
There is an urgent need to assess palliative care needs in the country along with
unmet needs of terminally ill patients so that these services can be tailored
according to the exigencies of our society.
Recognition of palliative care as a basic human right by the World Health
Organisation has prompted many countries to work on policies in view to improve
care of those living with incurable diseases. The absence of a national policy on
the provision of palliative care in Mauritius is the main reason why the country is
lagging behind in this field.
While studies worldwide have focussed on the impact of palliative care on the
quality of life of patients, evidence of its cost benefits are lacking. Studies proving
downstream cost-avoidance benefits can be done to convince policy makers on
the positive impact of palliative care services on the public health system. Health
36
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
care planners need to realise how palliative care is appropriate and economically
beneficial to support this approach of end of life care.
Investment in personnel training and setting up proper infrastructure are likely to
yield in decreased hospital admissions and use of medical services in addition to a
better patient focused care. Practitioners must develop communication skills,
compassion and have the knowledge for achieving the desired outcomes.
Setting up palliative care services will then require regular quality assessment,
monitoring, reporting and improvement. For this, lived experience of individuals
undergoing or delivering palliative care must be used so that policies are in line
with patients' needs. Patient reported data which measure satisfaction is crucial to
improving existing services. Implementing an Electronic Health Record system
may help in organising and using all these data.
Possible harmful effects of palliative care such as discontinuation of routine
medications, heavy use of opioid analgesics and late recourse to such care must
be thoroughly studied. Evidence promoting these practices is still lacking and they
may have only marginal benefits or even harmful consequences.
Quality palliative care depends largely on the skills of the caregivers. Physicians,
nurses, social workers should be empowered to deliver good care to terminally ill
patients by giving them proper training. Since palliative care involves an
interdisciplinary team, lack of cooperation and consistent approach between the
concerned health care professionals will lead to confusion and loss of hope for the
patients.
Patient education is also an important aspect which cannot be overlooked. Very
often patients are reluctant to receive palliative care as they regard this as
abandonment by their trusted physicians. Many are also not keen to involve many
37
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
caregivers other than their long term physicians and thus would rather not want to
accept help from palliative care experts.
Family and close ones of patients should also be educated about the disease and
how to help the patient without being overprotective, causing the latter to feel
useless.
A cultural shift towards recognition of its importance and acquisition of required
skills by doctors and patients' families is the cornerstone to the widespread
provision of palliative care. People should stop focussing only on the hope to live
longer but also on hope for comfort, compassion and realistic information.
5.3 STRENGTHS AND LIMITATIONS
The strength of the researcher resided in his motivation and personal interest in
the subject. Being a medical doctor, the researcher gained the trust of participants
easily and established a good rapport with each interviewee. This facilitated
honing in details of their personal experience which they would have otherwise
been reluctant to share.
Main limitation of this qualitative study is the lack of generalisability of results
obtained. However the main goal of a phenomenological study is not
generalisability but transferability. Experience of one person cannot be exactly
same as another person. Nevertheless the meaning of one's experience can be
same for others. The experience of one person can be of significance to others
(Ricoeur, 1976). An additional limitation is that the researcher was a first time
investigator for such qualitative study.
Regardless of these limitations, results of this study should be seen as a
contribution to understand the lived experience of cancer patients receiving
palliative care.
38
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
CHAPTER 6: CONCLUSION
Cancer has a major impact on the lives of patients in terms of their physical
condition and relationship with closed ones and God. From the way they related
their lived experience, it can easily be seen that their need for psychological and
emotional support was as important as or even more than control of symptoms
and side effects of cancer treatment. Consequently the need for a deeper
understanding of how terminally ill cancer patients cope with their illness rather
than focussing on symptom management is growing. Those symptoms most
commonly pain and suffering prior to death, still remain a main concern for the
patients. Lack of information on the course of their disease contributes largely to
this issue. Terminally ill patients apprehend the sufferings they might endure in
their very last stages. Reassurance and adequate pain control are key to improve
well being of the latter. The strong preference to die at home should prompt
development of home based palliative care.
Overall the participants perceived palliative care as a frightening experience which
they associated with death, hopelessness and dependency. This negativity was
further reinforced as a result of stigma related to cancer and palliative care.
Communication played a major role in the perceptions of patients and their
decision making. Physicians should be aware of the importance of the way they
disclose information to patients as this often leads to indelible scars in the patients’
minds. Patients want health care professionals to understand them and not
abandon them at such a difficult stage of their life.
There were many positive experiences of undergoing palliative care which were
revealed in this study. They were mainly about the satisfaction they got with the
support at the palliative care centre. They were thankful for the welcome they got
there, making them feel at home and psychological support which gave them
strength to live with their disease. Personalised care made them even more at
ease and significantly improved their quality of life.
39
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
The study showed the importance of integrating palliative care services in the
management of patients living with an incurable cancer. It does in no way
disregard conventional treatment options but rather increase patients' satisfaction
and quality of life.
There are different ways of providing helpful palliative care such as in patient, day
care centres or home based care. All of them are similar in the way that they
require compassion, sensitivity to patients' differences and good communication
skills to deal with each individual. Local beliefs and traditions must also be taken
into consideration. Those difficult but not impossible goals need to be met to
achieve a better quality of life for terminally ill cancer patients.
40
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
REFERENCES
1. Ahmedin Jemal, Melissa M. Center, Carol DeSantis and Elizabeth M. Ward
Global Patterns of Cancer Incidence and Mortality Rates and Trends
August 2010)
2. Appelin, G. (2004) ‘Patients ’ Experiences of Palliative Care A
Phenomenological
3. Arnold, B. L. (2011) ‘Mapping hospice patients’ perception and verbal
communication of end-of-life needs: an exploratory mixed methods inquiry’,
pp. 1–10.
4. Bakitas M., Lyans K.D., Hegel M.T., et al, Effects of a palliative care
intervention on clinical outcomes in patients with advanced cancer. JAMA
2009
5. Breffni H., Sawmi N., Rondin G., et al Experiences of patients and
caregivers with early palliative care: A qualitative study; Palliative Medicine
2017 vol.31(1)72-81)
6. Brumley et al; Increased satisfaction with care and lower costs, Results of a
randomised trial of in home palliative care J Am Geriatr 2007)
7. Chochinov HM, Hack T, Hassard T, et al. Understanding the will to live in
patients nearing death 2005
8. Chochinov HM, Hassard T, McClement S, et al. The landscape of distress
in the terminally ill. J Pain Symptom Manage 2009)
9. Clark David; From margins to centre: A review of the history of palliative
41
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
care in cancer 2007
10. Coelho, A. et al. (2016) ‘Comfort experience in palliative care: a
phenomenological
study
Comfort
experience
in
palliative
care:
a
phenomenological study’, BMC Palliative Care. BMC Palliative Care,
(December), pp. 0–8. doi: 10.1186/s12904-016-0145-0.
11. Connor, S. et al. (2015) Global Atlas of Palliative Care at the End of Life.
12. Creswell, J. W. (2014). Qualitative inquiry & research design: choosing
among five approaches (4th ed.). Thousand Oaks, CA: Sage.
13. Davis RM, Wagner EH, Groves T. Managing chronic disease. BMJ. 1999
14. EAPC Task Force on the development of Palliative Care in Europe
15. Ellingsen. S, Roxberg.A, Kristoffersen, Rosland JH & Alvsvag H.Being in
transit and in transition. The experience of time at the place, when living
with severe incurable disease- A phenomenological study; 2014
16. Engberink, A. O. et al. (2017) ‘Patient-centeredness to anticipate and
organize an end-of-life project for patients receiving at-home palliative care :
a
phenomenological
study’.
BMC
Family Practice,
pp.
1–8.
doi:
10.1186/s12875-017-0602-8.
17. Fadul Nada et al, Supportive versus palliative care; What's in a name? 2009
18. Fidler Miranda et al; A global view on cancer incidence and national levels
of the Human Development Index 2016)
19. Gidwani et al; Gap between recommendations and practice of palliative
42
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
care and hospice in cancer patients. J of palliative med 2016
20. Giorgi A. The descriptive phenomenological method in psychology: Journal
of
Phenomenological
Psychology,
Volume
43,
Issue
1,
2012
https://doi.org/10.1163/156916212X632934
21. Gilberto Lopes Investing in Cancer Prevention and Control to Reduce
Global Economic Burden 2015
22. Global action plan for the prevention and control of NCDs 2013-2020
23. Harding Richard, Irene Higginson Palliative care in sub Saharan Africa The
Lancet June 2005
24. Higginson L.J, Evans C.J. What is the evidence that palliative care teams
improve outcomes for cancer patients and their families? Cancer journal
2010
25. IARC, WHO press 2015
26. Karlsson, M. et al. (2014) ‘Meanings of existential uncertainty and certainty
for people diagnosed with cancer and receiving palliative treatment: a lifeworld phenomenological study’, BMC palliative care, 13(1), p. 28. doi:
10.1186/1472-684X-13-28.
27. Koffman J., Burke G., A. Dias, B. Raval, J. Byrne, J. Gonzales, C. Daniels,
Demographic factors and awareness of palliative care and related services,
Palliat. Med. 21 (2007)
28. Lynch Thomas, Stephen Connor, David Clark, Mapping Levels of Palliative
Care Development: A Global Update Journal of pain and symptom
43
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
management June 2013
29. Line David The Economist October 2015
30. Luckett, T. et al. (2014) ‘Elements of effective palliative care models: a rapid
review’.
31. Maciasz et al; Does it matter what you call it? A randomised trial of
language used to describe palliative care services 2013
32. Macleod, R. and Keeling, S. (2008) ‘Facing uncertainty: The lived
experience of palliative care Facing uncertainty: The lived experience of
palliative care’, (February 2017). doi: 10.1017/S1478951507000429.
33. Manraj SS, A Mohith, M Manraj, S Kalla, R Soobrah Selective screening of
breast cancer in women at increased risk: A pilot study 2016
34. McIlfatrick S, Noble H, McCorry NK, et al. Exploring public awareness and
perceptions of palliative care: a qualitative study 2014
35. Mullan F.; A founder of quality assessment encounters a troubled system
firsthand 2001)
36. Murphy NM: The wisdom of dying: Practices for living Boston: Element
Books Limited; 1999
37. Rasmussen Brigit Holritz et al; Experiences of living with a deteriorating
body in late palliative phases of cancer 2010)
38. Rice P, Ezzy D: Qualitative Research Methods: A health-focus South
Melbourne: Oxford University Press; 1999.
44
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
39. Ricoeur, P., 1976. Interpretation Theory: Discourse and the Surplusof
Meaning. Christian University Press, Forth Worth, TX.
40. Robinson, J. et al. (2016) ‘The “ problematisation ” of palliative care in
hospital : an exploratory review of international palliative care policy in five
countries’, BMC Palliative Care. BMC Palliative Care, pp. 1–8. doi:
10.1186/s12904-016-0137-0.
41. Sinclair, S. et al. (2016) ‘Sympathy, empathy, and compassion: A grounded
theory study of palliative care patients’ understandings, experiences, and
preferences’. Doi: 10.1177/0269216316663499.
42. Tamburini Marcello et al; Cancer patients' needs during hospitalisation: a
quantitative and qualitative study 2003
43. Tan, H. M. et al. (2011), ‘The experience of palliative patients and their
families of a family meeting utilised as an instrument for spiritual and
psychosocial care: A qualitative study’.
44. Temel et al; Early palliative care for patients with metastatic non small cell
carcinoma 2010
45. Teunissen SC, Wesker W, Kruitwagen C, et al. Symptom prevalence in
patients with incurable cancer: a systematic review. J Pain Symptom
Manage 2007
46. The Regence Foundation; Living well at the end of life: a national
conversation.;2011
47. United Nations Population Division. World Population Prospects, the 2008
45
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
revision
48. Wang, J. P. et al. (2016) ‘How different is the care of terminal pancreatic
cancer patients in inpatient palliative care units and acute hospital wards? A
nationwide population-based study’, BMC Palliative Care. BMC Palliative
Care, pp. 1–8. doi: 10.1186/s12904-016-0075-x.
49. Wentlandt, K. et al. (2016) ‘Quality of Care and Satisfaction with Care on
Palliative Care Units’, Journal of Pain and Symptom Management. Elsevier,
51(2), pp. 184–192. doi: 10.1016/j.jpainsymman.2015.10.006.
50. World Health Organization (2007) Cancer control: palliative care. WHO
guide for effective programmes
51. WHO Cancer Country Profiles 2015 Mauritius
52. WHO 2017 Definition of palliative care
53. Zabora James et al The prevalence of psychological distress by cancer site
2001
54. Zimmermann Camilla MD PhD, Nadia Swami BSc, Monika Krzyzanowska
MD MPH, Natasha Leighl MD MMSc, Anne Rydall MSc, Gary Rodin MD,
Ian Tannock
46
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDICES
APPENDIX 1 – WORD COUNT
Chapter
Number of words
Introduction
1,574
Literature Review
2,554
Research Methodology
518
Findings
3,484
Discussions & Recommendations
1,427
Conclusion
445
TOTAL
10,002
47
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDIX 2.1 – PROJECT PROPOSAL
03 March 2017
Dr Peeraully Suleiman
7, Bengali, Harbour view 1,
Justice Street,
Port Louis
To: The Chairperson
Faculty Ethics committee
University of Mauritius
Dear Sir/Madam,
Re: Approval of Msc Public Health Project
I, undersigned, am currently a student of the Msc Public Health course at the
University of Mauritius. As partial fulfillment for the programme, I am carrying out a
qualitative study.
Project title: Lived experience of palliative care among terminal stage cancer
patients in Mauritius: A phenomenological study
Investigator: Dr. Peeraully Suleiman
Msc. Public Health
Department of Medicine,
Faculty of Science,
University of Mauritius.
Supervisor: Dr. (Mrs) M. F. CHAN SUN
Department of Medicine,
Faculty of Science,
University of Mauritius.
Please find attached the research proposal, application for ethical approval for
research project involving human subjects, participant information sheet and
informed consent form.
I would be most grateful if clearance from the University of Mauritius Ethics
Committee could be granted to me to carry out the above- mentioned project. I will
ensure that all ethical guidelines are respected throughout the study.
Thank you for considering this request for ethics approval.
Yours faithfully
Dr Peeraully Suleiman
48
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDIX 2.2 – RESEARCH PROPOSAL
1. Title of the study
Lived experience of palliative care among terminal stage cancer patients in
Mauritius: A phenomenological study
2. A summary of the proposed research in lay/Non technical language
It is a qualitative study which aims at exploring the lived experience of patients
receiving palliative care.
Targeted study sample will be terminal stage cancer patients undergoing palliative
care.
Data will be collected via individual interviews in order to capture all their ideas
and aspects of their experience.
This will help in the understanding of cancer patients' needs.
3. A clear statement for the justification for the study, its significance in
development and in meeting the needs of the country/ population in which
the research is carried out
Cancers figure among the leading causes of morbidity and mortality worldwide
with approximately 8.8 million cancer related deaths, accounting for 1 in 6 deaths
globally, and 14 million new cases every year (WHO Cancer key facts, 2017).
A meta analysis conducted by Rasmussen et al in 2010, on experiences of living
with a deteriorating body in late palliative phases of cancer concluded that while
much research has been done on symptoms of people with cancer in late palliative
phases, knowledge about the life experience of these people as death approaches
is very limited (Brigit Holritz Rasmussen et al; Experiences of living with a
deteriorating body in late palliative phases of cancer 2010).
Most people diagnosed with cancer live in low and middle income countries where
70% cancer deaths occur (WHO Cancer key facts, 2017).
49
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
In Mauritius there were 1100 cancer related deaths in 2014, as per latest data
available, and a 70% increase in new cases is expected over the next 2 decades
(WHO Cancer Country Profiles 2014 Mauritius).
Early detection and enhanced method of treatment make people with
disseminated cancer live longer. Therefore health-care professionals working with
cancer patients will deal with an increasing number of patients in palliative stage in
the coming years.
Since there is no existing qualitative study on the lived experience of terminal
stage cancer patients receiving palliative care in Mauritius, obtaining feedback
from these patients about their experiences is important and can guide practice,
policy reforms and future research.
4. Summary of all previous studies on the topic including unpublished
studies known to the investigators and information on all previously
published research on the topic
Palliative care is an approach that improves the quality of life of patients and their
families facing problem associated with life threatening illnesses.
This includes the prevention and relief of pain and other problems, physical,
psychosocial and spiritual (WHO definition of palliative care (WHO 2017)).
Along with prevention, early detection and treatment of cancer, palliative care is
becoming increasingly important. It is an urgent humanitarian need for people with
cancer worldwide and effective public health strategies comprising of community
and home based care are essential (World Cancer Report 2014).
Palliative care is ideally given throughout a patient's experience with cancer,
beginning at diagnosis, continue through treatment, follow up care and the end of
life (National Cancer Institute- US Dept of Health and Human Service).
This is seldom practised and there exist a strong stigma attached to palliative care.
It is often associated with death, hopelessness and dependency.
50
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Camilla Zimmermann et al found in her study on “Perceptions of palliative care
among patients with advanced cancer and their caregivers” found that palliative
care is often portrayed as death and initially evoked fear and shock among the
participants.(Camilla Zimmermann et al, Perceptions of palliative care among
patients with advanced cancer and their caregivers)
There is increasing evidence showing that early specialised palliative care is
associated with improvement in the quality of life, patient's satisfaction and
symptom burden compared to standard oncology care alone (Bakitas et al 2009).
Experiences of patients and caregivers with early palliative care: A
qualitative study
Breffni H 2017
This grounded theory study compared the views of patients who received early
palliative care, which consisted of a multidisciplinary team assessing their physical,
psychosocial and spiritual needs, with those who had access to standard oncology
care only.
According to the author, quantitative measures for quality of life cannot capture all
aspects of individual patient's experience, hence the need for such a study.
Major themes which emerged from this study were

Prompt, personalised symptom management

Holistic support of patients

Guidance in decision making, and

Preparation for the future
Patients particularly liked the personal support and the fact that they were always
listened to and felt people are interested in how they felt.
They described palliative care as a safety net and felt more at ease with their
disease.
51
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Being in transit and in transition. The experience of time at the place, when
living with severe incurable disease- A phenomenological study
Ellingsen, et al, 2014
The authors of this study assessed the experience of cancer patients receiving
palliative care in different settings; namely at home, at a palliative day care center
and in hospital.
Participants described hospital as a safe environment but complained that it is a
too busy place and felt ignored by the hospital staff who seemed to be always in a
hurry.
Those who were interviewed at home enjoyed the comfort of their home but found
it tedious and tiring.
Patients receiving care at the palliative care department were the ones who were
the most satisfied with the quality of care. The supportive environment helped
them find hope and desire to live in the time they had left.
Thus the study concluded that palliative care centres offer the best experience of
care in terms of safety and psychosocial support for cancer patients.
Facing uncertainty: The lived experience of palliative care
Mckechnie et al 2008
The uncertainty faced by terminally ill cancer patients, from the time of diagnosis
to admission in a palliative care unit, was studied in this phenomenological study.
The patients faced uncertainty in:

the course of their illness and symptoms

side effects of medications and how their body changed during their
disease

changing social roles, especially in relation to their family and work
Despite all these, no participant of this study wished to be admitted in a palliative
care unit early in their disease. They all wanted to postpone it as long as possible.
However access to palliative care made the participants feel supported and know
that their death would be a comfortable one in a palliative care unit.
52
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Comfort experience in palliative care: a phenomenological study
Coelho et al 2016
The factors which enhance the experience of comfort in terminally ill patients were
explored in this study.
Admission in a palliative care unit was found to be of major importance as
informants acknowledged that the support they were given there made them feel
much better.
Other factors were hope for recovery, acceptance of their vulnerability and
openness to spirituality.
5. The objectives of the trial or study
To identify the needs of terminal stage cancer patients undergoing palliative
treatment.
To capture the psychosocial aspect of living with a cancer at a terminal stage.
6.A brief description of the design of the trial or study
It is a phenomenological type of study aimed at exploring the experience of
palliative care among individuals living with terminal stage cancer.
Face to face interviews, following informed consent, will be carried out to get an in
depth view of the lived experience of these patients. The study will take place at a
hospice/ day care centre where terminal stage cancer patients receive palliative
care and support.
Participation will be entirely voluntary and withdrawal at any point of time will be
allowed.
Participation in this study will also not affect in any ways the treatment of the
patients.
Anonymity will be maintained throughout the study.
7.The number of research subjects needed to achieve the study objectives
Bearing in mind that interviews must be conducted till saturation point is attained,
a convenience sample of about 20 participants will be used.
53
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
8. The criteria for inclusion or exclusion of potential subjects
Participants will be eligible for the study if

They are at least 18 years old

Do not demonstrate any cognitive impairment

Are all able to provide written informed consent

Are not too ill to participate
9. Benefits of the research to subjects
This provides to the patients with a unique opportunity to freely share their
experience of undergoing palliative care.
10. Expected benefit of the research to the population
This study will allow us to grasp the lived experience of terminal stage cancer
patients receiving palliative and supportive care. This may help in the development
of other programmes of palliative care.
11. Plans to inform subjects about the results of the study
An abstract of the study will be mailed to the participants upon completion of the
project.
12. Time schedule for completion of the study
Ethical clearance: End of March 2017
Data collection : April 2017
Data analysis
: May 2017
Report writing : June 2017
54
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
13. List of references
1. Adriana
Coelho,
Vitor
Parola,
Miguel
Escobar-Bravo,
João
Apóstolo;Comfort experience in palliative care: a phenomenological study
2016
2. Bakitas M., Lyans K.D., Hegel M.T., et al, Effects of a palliative care
intervention on clinical outcomes in patients with advanced cancer. JAMA
2009
3. Breffni H., Sawmi N., Rondin G., et al, Experiences of patients and
caregivers with early palliative care- a qualitative study. Palliative medicine
2017
4. Ellingsen, S., Roxberg, Å., Kristoffersen, K., RoslandJH. & Alvsvåg,
H.;Being in transit and in transition. The experience of time at the place,
when living with severe incurable disease- A phenomenological study 2014
5. Mckechnie Roz Rod Macleod Sally Keeling; Facing uncertainty: The lived
experience of palliative care 2017
6. National Cancer Institute- US Dept of Health and Human Service
7. Rasmussen Brigit Holritz et al; Experiences of living with a deteriorating
body in late palliative phases of cancer 2010
8. WHO Cancer Country Profiles 2014 Mauritius
9. WHO Cancer key facts, 2017
10. Who definition of palliative care (WHO 2017)
11. Zimmermann Camilla et al, Perceptions of palliative care among patients
with advanced cancer and their caregivers
14. Guiding interview questions
1. Please tell me about your experience as a cancer patient undergoing
palliative care here.
2. How do you feel about your status?
Tell me how did your roles and relationships in your family and at work
change?
3. Is there anything else you would like to tell me?
55
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Annexe A to Research Proposal: Participant Information sheet
Project title: Lived experience of palliative care among terminal stage cancer
patients in Mauritius: A phenomenological study
I am conducting this study as part of the requirements of the Msc. Public Health
programme of the University of Mauritius.
Purpose and nature of the study
With the ever increasing incidence of cancer in Mauritius, significant advances has
been made in the delivery of medical care to cancer patients. However the
concept of psychosocial support as part of palliative care for terminal cancer
patients is largely unknown as compared to conventional oncological care.
This is why I wish to do this study. It will allow me to explore the lived experiences
of patients having benefited from palliative care at hospice level and highlight the
difference this makes to patients.
The results of the study can be used to improve the quality of palliative care and
help in the development of other palliative care units.
Procedures involved
Your participation in this study is entirely voluntary. Even after agreeing to
participate, you can choose not to answer any particular question or withdraw from
the study at any time.
If you agree to participate, you will be required to fill an informed consent form.
This is important as it ensures that you are participating in this study out of your
free will and have obtained all information you need on the subject. You will then
be interviewed about your personal experiences of palliative care.
Your participation in this study will be highly appreciated.
56
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Confidentiality
Your participation in this study will be anonymous, all consent forms will be
destroyed as soon as the project is completed. It will not have any effect on your
treatment.
In case you need additional information, feel free to contact me or my supervisor.
Our contact details are;
Dr. Peeraully Suleiman (Investigator)
Msc. Public Health
Department of Medicine,
Faculty of Science,
University of Mauritius.
Telephone Number: 57793181
E- Mail address: suleiman.peeraully@hotmail.com
Dr. (Mrs) M. F. Chan Sun (Supervisor)
Department of Medicine,
Faculty of Science,
University of Mauritius.
Telephone Number: 403 7463
E- Mail address: lan.sun@uom.ac.mu
57
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
Annexe B to Research Proposal: Informed Consent Form
I agree to be a participant in the study entitled “Lived experience of palliative care
among terminal stage cancer patients in Mauritius: A phenomenological study”
being carried out by Dr. Peeraully Suleiman of the University of Mauritius.
By signing this Consent Form, I acknowledge that:
I have read and understood the information sheet.
I was given the opportunity to ask questions related to the study in general and
was satisfied with the answers obtained.
I consent voluntarily to participate in this study and understand that I have the right
to withdraw at any time.
Date................
Signature of Participant.............................................
58
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDIX 3 – ETHICAL CLEARANCE
59
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study
APPENDIX 4 – PROGRESS LOG
RECORD OF STRATEGIC MEETINGS WITH SUPERVISOR
Meetings
1
2
3
4
5
6
Date
12/09/16
14/11/16
10/03/17
18/03/17
24/07/17
25/08/17
Topics/Themes Supervisor’s
Discussed
Initials
Research topic
M.F.L
Research proposal
M.F.L
Methodology
M.F.L
Data analysis
M.F.L
Literature review
M.F.L
Discussion
M.F.L
Student’s
Initials
S.P
S.P
S.P
S.P
S.P
S.P
60
Lived experience of palliative care among terminal stage cancer patients in Mauritius:
A Phenomenological Study