Wajid et al.

BMC Palliative Care (2021) 20:70

https://doi.org/10.1186/s12904-021-00757-8

RESEARCH Open Access

Why is hospice care important? An

exploration of its benefits for patients with
terminal cancer
Maria Wajid1* , Eslavath Rajkumar1 , J. Romate2 , Allen Joshua George1 , R. Lakshmi1 and Srinagesh Simha3

Abstract
Background: Palliative care has proven over time that it can help prolong life spans with the use of hospices. The
literature reports that most patients with cancer are diagnosed in the later stages and since there is no cure, they will
require palliative care at some point during their illness. However, most developing countries, including India, have
failed to establish hospices; as a result, large numbers of cancer patients are still deprived of palliative care. To initiate
better access to hospices, it is important to understand the benefits of the same. Therefore, the present study aims to
explore the advantages of hospice care from the perspectives of advanced cancer patients living in hospice centres.
Methods: The present study uses the method of exploratory research. Using purposive sampling, 8 participants living
in a hospice in Bengaluru, India were selected and semi-structured interviews were conducted to collect data from the
patients. This data was analysed using thematic analysis. Any underlying patterns were determined to identify the
evident themes that emerged from the data.
Results: After thematic analysis, 4 themes were identified, namely, pain management, altruism, a good death, and
overall satisfaction. Within some themes, there were specific sub-themes that have been illustrated using direct quotes
from the interviews.
Conclusion: The findings of this study suggest that hospice centres play an important role in helping patients to come
out of the trauma during the advanced stages of cancer. A sense of relief can be given to the patient by implementing
palliative care. This is possible by building more hospice centres in the country where all individuals, irrespective of their
financial status, can opt for the service. Having palliative care will provide dignified death to the patients.
Keywords: Terminal cancer patients, Hospice, Palliative care need, India

Introduction 2020. The estimates are expected to rise more by 2040

Cancer is one of the world’s deadliest diseases. Its at 30.2 million cases. India alone has contributed to 1.32
impact on society is immense and for most people, there million cases and 8,520,000 deaths, India is estimated to
is no scarier diagnosis than that of cancer. According to contribute 2.09 million cases by 2040 and estimated
the new estimates on global cancer burden released by deaths to occur by 2040 is 1.38 million [10].
International Agency for Research on Cancer (IARC) As patients are diagnosed in the later stages and as
indicated that there were 19.3 million cases of cancer in there is no cure, they will require palliative care at some
the world, out of which 10 million deaths occurred in point during their illness [9]. Terminal cancer is a stage
of the disease where there is no option for curative treat-
* Correspondence: [email protected]
ment; no treatment will eliminate or cure cancer at this
1
Department of Psychology, Central University of Karnataka, Gulbarga, India
Full list of author information is available at the end of the article

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 2 of 8

stage [8]. Approaching death in the right manner is cru- have lived or viewing their approaching death and giving
cial [29] and it can be achieved through hospices, as the meaning to it, plays an integral and influential role in
feeling of a good death enhances the medical field’s their treatment.
orientation, approach, and results to a large extent by However, most developing countries, including India,
providing care to patients based on the severity of their have failed to establish hospices; consequently, a large
illness, providing a good quality of life [20]. number of terminal cancer patients are deprived of pal-
Hospice care is an approach that involves people from liative care in the end stages of their lives [21].
multiple disciplines in providing comprehensive care for Hospices also support the family and/or caregiver(s)
patients nearing their end of life. There are certain by providing bereavement services [19]. The aim and
criteria for patients who can avail hospice services; e.g., designation of hospice care is to give thorough, interdis-
patients must be in the terminal phase of the illness with ciplinary, and team-based palliative care to patients en-
a life expectancy of 6 months or less. In the US, the eligi- tering the last months of their life. This is the primary
bility for hospice care is based on prognosis of the life aim of every hospice and it includes a care quotient for
expectancy, which is less than 6 months, and for pallia- the family as well [20]. Studies have proven that patients
tive care, the eligibility is based on need; no prognostic experience feelings of being cared for, reduced pain, and
restrictions apply. Other countries are synonymous in positivity [30] in hospices. To have better hospice facil-
these two terminologies. The main care focus for pa- ities, it is important to understand its benefits. There is
tients is symptom management, which improves the insufficient literature regarding this topic. Research in
quality of the remainder of their life. Palliative care in- countries that have successfully established hospice care
volves not only the patient but also their family mem- for large audiences are helpful in the development, im-
bers. Other measures are also taken so that the patients plementation, and monitoring of palliative care services
can live life comfortably and maintain dignity [2]. for terminally ill patients [22]. The present study aims to
Hospice care focuses on reducing intensive care to pro- explore the benefits of hospice care for patients with ter-
long life. Avoiding expensive hospitalizations and admit- minal cancer from the perspectives of patients staying at
ting the patient at a hospice could improve life quality Karunashraya hospice in Bengaluru.
drastically towards the end [34].
According to the World Health Organization (WHO)
Methods
[33], Palliative care is an approach that improves the
Study design
quality of life of patients and their families facing the
This was a qualitative study where data was collected
problem associated with a life-threatening illness,
from interviews and thematically analysed. Thematic
through the prevention and relief of suffering through
analysis is an iterative process that starts from raw data
early identification and impeccable assessment and treat-
and transforms into more meaningful data. This method
ment of pain and other problems, physical, psychosocial
involves organizing the data, locating codes, identifying,
and spiritual. Too et al. [30] reported that patients in
reviewing, defining, and reporting themes and sub-
palliative care have experienced improvement in feelings,
themes [4]. Therefore, the patterns were determined
quality of life, and pain management. An estimated 20
using thematic analysis to pick the evident themes that
million patients can benefit from the care service glo-
emerged from the data.
bally in a single year. An increase of 58% was observed
in the countries that are opting to establish palliative
care services; 21 countries have been added to the tally Participants
since 2006. Africa has seen many benefits from the setup Purposive sampling was employed to recruit participants
while the US and Canada have recorded high develop- from a hospice providing palliative care to terminal can-
ment in this area [17]. In the US, community-based cer patients in Bengaluru. Out of all the patients in the
foundations laid the initial stepping stones for establish- hospice who were screened, 8 were chosen as eligible
ing palliative care centers, numbers of which have seen candidates for the study, 3 were male and 5 were female
an increase in ratio to 110% over the past 30 years. As (refer Table 1). The reasons for ineligibility were fluctu-
the demand was high, this service was extended to hos- ating health, shyness, and unwillingness to share their
pitals; every 2 out of 3 were equipped with palliative experience. The eligibility of the participants were ac-
care, showing an increase of 138% since 2000. Among cording to the following criteria:
the 234 countries it was observed that 136 of them had
established hospice-palliative care services, which has a. Aware of the diagnosis and prognosis of their illness
seen an addition of 21 countries establishing such ser- b. Able to communicate
vices since 2006 [17]. Providing meaning in life for pa- c. Proficient in English or Kannada
tients, be it by focusing on the positives in the lives they d. Aged 18 years and above

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 3 of 8

Table 1 Socio-Demographic Characteristics of the participants

Pseudonyms Names Age Gender Cancer Religion
BA 39 Male Leukemia Hindu
BG 38 Female Carcinoma Breast Christian
TJ 69 Male Carcinoma Thyroid Hindu
RC 45 Female Carcinoma Mouth Hindu
LK 44 Male Carcinoma Mouth Christian
RK 59 Female Carcinoma Stomach Hindu
AF 60 Female Carcinoma Stomach Islam
CD 64 Female Carcinoma Stomach Converted Christian

e. Have been at the hospice for 2 months or more to clarification. The counsellor of the institute also
have experienced the overall services provided there attended the interviews to oversee the situation in case
and would be at better understanding to appreciate the patient felt uncomfortable. The investigator audio-
the help they received at the organisation. taped and transcribed these interviews. The average dur-
ation of interviews was found to be 34 min.
Patients with suffering from psychological disorders
such as schizophrenia, dementia, and/or autism were Data analysis
not considered ineligible. The selected participants were All 8 interviews were included in the analysis. The inves-
explained about the study in detail and a convenient tigator transcribed the audio recordings and (in cases
time was scheduled to conduct the interviews. Demo- where the participant communicated in Kannada) trans-
graphic information, such as age, gender, and religion, lated them to English. Thematic analysis was used to
was also collected. analyze the data through the following steps:

Data collection tool and procedure 1. Thoroughly reading the transcripts to grasp all the
Before initiating the data collection process, a six-month minute details
internship was undertaken by the researcher at the 2. Constructing codes based on recognized similarities
hospice. The medical director of the institute trained the 3. Identifying all potential themes and sub-themes
researcher in communicative and questioning skills and 4. Reviewing the identified themes to ensure that they
various other aspects such as how to initiate and com- reflected the dataset
municate with the patients, ways to conduct interviews, 5. Labelling the themes to give precise definition
and how to handle various situations that may arise dur- 6. Report was then clearly and convincingly written,
ing the interview. Training included lectures, role-plays explaining the stories based on the data analysis [4].
and rehearsals. Meanwhile, the counsellors of the insti-
tute screened for participants using purposive sampling.
Prior to the interview, written consent was obtained by Ethical approval
the investigator and a brief explanation was provided re- The study was underway after seeking the approval of
garding the study and the rights of the participant, i.e., the ethical committee at Karunashraya. Patient’s health
they had the liberty to refuse to answer any question or condition was given importance; the interview was dis-
even withdraw from the study. The participants were continued if he/she was unable to continue. Further-
reassured about privacy, confidentiality, and the freedom more, ward nurses were asked to maintain close
to express their views. Semi-structured interviews were supervision on the interviewed patients and counsellors
conducted. The interview guide was prepared using a re- to conduct a separate session to check on any negative
view of the literature and was translated into the local influence on patients after the interview.
language, Kannada, by a professional translator. The
interview guide included questions such as “What are Socio-demographic characteristics
the most important things in your life right now?”, “How Table 1 shows the socio demographic details of the par-
has life changed after coming here?”, “What is the best ticipants. A total of 8 participants were enrolled for this
thing about living here?”, “How do you think your death study. The mean age of the participants is 52.25 and
could be made easier?”, “What would you like in your Standard Deviation is 12.09. Regarding religion, 50%
future care?” Phrases such as “Go on”, “Could you ex- were Hindus, 40% were Christians, and 10% were
plain more?”, “Like?” etc. were used to get further Muslims (Refer Table 1).

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 4 of 8

Results I am not a nurse, but if I could return the care

The analysis of the interviews presented 4 main themes: provided by Karunashraya, even by doing little
things like writing records or work in the office, I
i. Pain management would do so without hesitation.”
ii. Altruism
iii. Good death Moreover, because the patients had endured agony and
iv. Overall satisfaction depression, they wished to be able to alleviate these feel-
ings for others. BG expressed,
These themes demonstrate the challenges that ad-
vanced cancer patients experience and have been illus- If God gives me a healthy life, then I want to help
trated using direct quotes from the interviews. orphans and the needy. I have endured a lot of pain
in my life. Nobody should experience similar
Theme 1: Pain Management hardships. That’s why we need to help each other.
Pain affected the participants psychologically due to the
feeling of loss of control which led to negative behav- Palliative care had set an example of benevolence and
iours such as suicide attempts. Pain is an important con- selflessness that inspired the participants to be of help
cern for patients as it was intolerable and difficult to for and assuage he pain of others. The informants were
manage. BG said, able to find meaning in life by helping for others. “It is
after coming here that I have found purpose in life,
Because of the intolerable pain, I have tried to which is to help others because life is very short. I be-
commit suicide more than 10 times. The cancerous lieve everybody must be pure at heart and good to each
area had developed maggots that I had to remove other,” TJ asserted.
myself. I would think that these should have been This desire to help others is because of the happiness
on my dead body and not on me now. There was they had gained at the hospice. The compassionate they
nobody to help me during my pain and suffering. received provided them with a sense of purpose and
meaning and also helped boost self-esteem, which was
When asked if they felt any difference being at the hos- lost in the course of the illness.
pice from home, their answers were satisfying as they
mentioned that their pain had diminished and expressed Token of gratification
satisfaction for receiving such good care services. BA A few participants had expressed their desire to donate
said, “I suffered a lot in the past but after coming here, I their organs after their death as an expression of grati-
feel better. Now, I don’t feel any pain and all.” The hos- tude. Participants felt that they have a duty toward their
pice was a boon to each participant in terms of relieving fellow human beings by helping them any way they can
their pain through effective pain management rather because of all the help they have been receiving at the
than suffering at home. hospice. They felt that by doing so, they might save lives
and simultaneously improve many lives related to the re-
cipient. BG said,
Theme 2: Altruism
It is observed that patients acquired feelings of altruism If any part of my body is good enough for people to
because of the help they receive at the hospice. Sub- use it, be it the eyes, ears, or any part, I would like
themes included kindness to others while living and to donate. I don’t want others to suffer like me. I
organ donation. have informed my family that my decision is to be
respected and obliged.
Eagerness to help
Since most patients were treated with love and respect BA asserted,
at the hospice, their physical, emotional, and social
needs were taken care of. Most participants stated that If organ donation is useful, then why shouldn’t we
they also desired to help others. The predominant rea- do it? I feel that it is noble work. After coming here,
son behind this was the help and medical attention they I definitely want to donate my organs because they
had been receiving from the hospice, likes of which is help us so much, and the least I can do in return is
not affordable for them. BA remarked, “Besides my per- help others by organ donation.
sonal goals, I had always wished to contribute to society.
After coming to the hospice and seeing how much they One informant expressed that the organs be taken
are doing, this wish was reinforced further.” RL said, only if they are deemed good for a normal human being

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 5 of 8

because they don’t want to be the reason for pain in worries due to the cancer also resulted in the emergence
others. Such an act of kindness will provide them a sense of the feeling of being a burden to the caregiver, their
of respect and fulfilment in their last days. family and people around them. The perception of
themselves as a burden arose with the need to die with-
Theme 3: Good Death out troubling others because by now, the informants felt
Thoughts regarding dying a good death endeavoured that they were a physical and emotional burden for their
among the participants. They expressed their beliefs on near and dear ones. BG asserted,
how they wished to die. Sub-themes include painless
deaths, being in a good place, and not disturbing others. The person next to me shouldn’t feel annoyed by
me. They shouldn’t think, “Ayyo, why is she crying
Painless death so much?” or “Why is she cribbing so much? She
Most participants expressed the wish to die without any disturbs me sleep at nights with her whining”. No
pain, maintaining that death should be quick and pain- one should ever feel like this about me. I shouldn’t
less. BA said, be a burden to others.

Death should come to me without pain. Cries. I RL says,

want to die without knowing it, just close my eyes
and without any suffering. I wish it would happen I am a person who never likes to hurt anybody
when I am least expecting it, maybe while I am just because I have gone through a lot since I was a
sitting. child and I know how people feel when they are
disturbed or hurt. So, I don’t want to be a burden
Informants were also observed being considerate of on others or trouble them.
others’ feelings; a death that does not cause others dis-
tress was also considered a good death. BG also men- The informants were aware that the illness had reached
tioned, “I want to die with absolutely no pain.” a stage where they might have to die in the near future.
The desire to die without pain was the primary wish Maintaining self-sufficiency for as long as possible was
that patients expressed when asked about their views on their goal besides dying without giving people around
a good death. They felt they had already endured much them a chance to grumble about them being a burden
and wished for a painless death. or even being a reason for bother. They wished to be re-
membered by others on a good note. The perception of
Good place a good death of the informants can be made a possibility
According to BA, the place of death was an important in hospices.
factor for a good death. The value of the place in which
they want to die symbolizes the connection with the Theme 4: Overall Satisfaction
place. It is seen that certain feelings associated with the Sub-themes include a feeling of contentment and family
place bring a sense of comfort at the time of death. An patronage.
individual might have led a lifetime at a place where
peace and tranquillity was found, like the house they Feeling of contentment
have lived in. BA stated, “A good place is also important The participants expressed their gratitude for their care
for me to die. A peaceful place like Karunashraya is in the hospice. They expressed their happiness and satis-
preferable.” faction after coming to the hospice because their needs
As the participant was suffering from the illness at were being fulfilled with care, support, and compassion.
home before coming to the hospice, they associated dis- They were content and did not wish for more than what
comfort and pain with their home, which was obvious was being provided. BA said, “I feel better, sir, and in
and noticeable. Consequently, they wished to die at the fact, it’s very good here. From the treatment to the ser-
hospice instead of at home because of the feeling of se- vice, everyone, including the doctor, counsellor, and
curity and comfort that they had experienced at Karu- nurses, support me so much. I feel satisfied and happy.”
nashraya. They felt that the hospice would take good LK stated, “After coming here, I’m getting rest and get
care of them by making them feel at ease during the end dressed on time. I feel good here, ma’am.”
of life. BG mentioned,

Consideration of others’ distress They look after me so well here. I have a feeling
Participants had seen themselves face the odds, enduring comparable to being at vaishnava vaikunta (god’s
stress, pain and anxiety all the while. These unending house). I cannot stop myself from saying repeatedly

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 6 of 8

that people here have taken care of me so well. Even Discussion

my children and my mother didn’t take care of me Participants in this study mentioned experiencing phys-
so well. Sometimes, when I am feeling sad, nurses ical pain associated with their terminal illness and its ef-
here try to console me and the doctors also give me fects on their mental health. Rumsey et al. [27] reported
hope. My life is totally different and I am happy that 60 to 90% of advanced cancer patients experience
living here. excruciating pain. This leads to many issues such as dis-
comfort, stress, frustration, and anxiety. Pain relief and
RL said, palliative care are integral to cancer care. When hospice
patients who are in their pain are in control, it results in
I became content after coming here. This place feels a better life quality, relationships and emotional support
like home, more than my actual home does. They and helps the family members to feel less burdened. Re-
are very warm and caring here. I have never seen searchers have stated the suffering of the patients was
such a good place, clean too! They don’t hurl it onto intense at the end of life and pain was the major
the table; they give it with love and affection. You concern. This then leads to other feelings such as ex-
actually feel like eating! haustion, depression, psychological distress, and self-
isolation, which directly impact life quality [26]. Patients
The hospice attended to the participants’ every worry, and their family members feel helpless when they have
causing the participants to feel content and comfortable. to take care of the patient at home. It is seen that most
Participants likened the hospice to their own home and caregivers are frustrated, depressed, and helpless.
even to God’s home because of the level of care that they According to research, the caregivers themselves show
received. psychological stress as they tackle the psychological
emotions of the patients at the end of life [5]. Studies
Family patronage have shown that about 4 to 70% caregivers went through
The participants expressed that it was difficult for their anxiety, depression, and psychological distress [13, 25].
family members to manage them because of emotional Hospices could be a source of satisfaction for termin-
and mental stress and physical disturbance due to their ally ill patients. As this study shows, participants, after
illness. The informants were dependent on their care- receiving help and care at the hospice, acquired a sense
givers for physical assistance, which was seen as a matter of altruism at the end stage of life; they wished to be-
of concern among most patients. While the participants come a source of happiness to people around them. This
observed the amount of attention they needed, mental could be the last spring of pride and fulfilment they
disturbance among the family members had developed could achieve. Most participants in this study had a
as a result. BG said, common response to help society by donating their or-
gans after death. Donating organs is like a life-enhancing
Nobody has the strength to take care of me at opportunity for the participants. One participant men-
home, madam. Mother can’t as she is old. My elder tioned that we are all born with a purpose; hence, this
sister stays with her husband. I can’t ask anybody. I could be the purpose that they are fulfilling. Such con-
don’t want to trouble anyone either. siderations with terminally ill patients may not stand a
chance in reality, but it is positive to note that patients
RL mentioned, are utmost happy with care and display their token of
gratitude to the world and needy.
If at all anything has to happen or if I feel I am In this study, it was also found that participants were
being a burden on my family, I will just walk away looking for moments of satisfaction before life ends. Pa-
and go to Karunashraya. I will hand over all the tients might have endured hardships during the course
things there. I will stay there till I die because I of illness but their stay at the hospice has brought in
know they will give me love and affection. overall satisfaction in their life. Informants also mention
that they were heard empathetically about their illness
The informants understood the additional distress they and worries and care was provided to a level that they
caused to their family members and caregivers. However, were utmost satisfied. Improving the satisfaction quo-
participants expressed that the hospice provided support tient also lowers the pessimistic emotions of the patients
to the family during the time of crisis. It stood as a pillar [3, 18]. Lin & Bauer-Wu [14] reported that the major
of strength. signs of the quality of life are a positive attitude, relaxed
The researcher also observed that female had more mind, sense of satisfaction and wellbeing. The feeling of
faith and belief in god whereas religion was not a coping satisfying life leads to achieving a good death [6]. Having
mechanism for males. a good death was also influenced by not being a burden

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Wajid et al. BMC Palliative Care (2021) 20:70 Page 7 of 8

on others and getting to choose the place of death as it patient as it brought about a sense of care and relief.
gives them a feeling of comfort while embracing death The same can be achieved for higher numbers of pa-
after having found solace in life. tients by establishing more hospice centers that are ac-
In addition, hospice shares equal importance between cessible. Further studies revealed that palliative care
the living and dying and this represents the best of pal- service establishments are cost-efficient when compared
liative care [16]. The Institute of Medicine defines good to other medical facilities. Building such centers will in-
death as: “decent or good death is one that is: free from crease the ratio of patients availing these services, pro-
avoidable distress and suffering for patients, families, vide dignified deaths to patients and give support to
and caregivers; in general accord with patients’ and fam- their family and caregivers.
ilies’ wishes; and reasonably consistent with clinical, cul-
Acknowledgments
tural, and ethical standards” [24]. Facilitating good death The author would like to thank the counsellors, doctors, and nurses of
relieves physical pain along with addressing the psycho- Karunashraya for their immense support and cooperation. The author would
logical and spiritual needs of the patient by reducing the also like to thank the participants for taking part in the study.
fear of death [31]. Psychologists have a role in the ex- Authors’ contributions
pansion of care given to the terminally ill patients and Conceptualising of the study was done by Maria Wajid and Eslavath
also the family by helping them achieve a good death. Rajkumar. Main manuscript was written by Maria Wajid. Data was gathered
by Maria Wajid, Srinagesh Simha, Allen Joshua George and R Lakshmi,
The quality of death is positively correlated with the set- Editing and proof reading was done Eslavath Rajkumar and J Romate. All
tling of one’s affairs and timing the death appropriately authors read and approved the final manuscript.
[32] and the place of death [7].
Funding
The initiation of building hospices will not be a mon- This research has not received any specific grant from any funding agencies,
etary burden on the government as palliative care is not commercial or not-for-profit sectors.
high-cost expenditure as compared to other specialties
Availability of data and materials
[2]. Yet a large portion of India lacks palliative care facil- The data will be available from the corresponding author on reasonable
ities except for Kerala [17, 28]. Even in the area that request and requirement.
covers palliative care, it is only available in major metro-
Declarations
politan cities, this makes the rural population left out in
availing the facility because of lack of awareness, absence Ethics approval and consent to participate
of insurance, poverty and high charges on transportation The research was performed in accordance with guidelines and regulations
of Declaration of Helsinki and after obtaining ethical clearance from Hospice
[1, 11, 15, 23]. Out of 908 palliative care services in Trust- Karunashraya, Bangalore. All participants provided written and
India, 841 are in the state of Kerala. This shows an im- informed consent to participate in the study.
balance in the availability of services in the country (Na-
Consent for publication
tional Strategies for Palliative Care in India). It has been Not applicable.
observed in parts of India where palliative care is estab-
lished, individuals are benefiting from it. Hence, making Competing interests
Authors declared no competing interest.
hospice available within reach will be of benefit to the
patients with terminal cancer to achieve quality of life Author details
1
and good death. These care centres give a unique mean- Department of Psychology, Central University of Karnataka, Gulbarga, India.
2
Head of the Department, Department of Psychology, Central University of
ing to the end of life [12]. Karnataka, Gulbarga, India. 3Karunashraya, Bangalore, India.

Limitations and future directions Received: 29 December 2020 Accepted: 1 April 2021
While consistent effort was made to conduct this paper
with minimum limitations, there still exist a few. This References
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