A COMPARATIVE STUDY ON THE EFFECTIVENESS OF HOME BASED PALLIATIVE CARE AND HOSPITAL-BASED PALLIATIVE CARE IN IMPROVING THE QUALITY OF LIFE
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- Title
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A COMPARATIVE STUDY ON THE EFFECTIVENESS OF HOME
BASED PALLIATIVE CARE AND HOSPITAL-BASED PALLIATIVE
CARE IN IMPROVING THE QUALITY OF LIFE
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A COMPARATIVE STUDY ON THE EFFECTIVENESS OF HOME
BASED PALLIATIVE CARE AND HOSPITAL BASED PALLIATIVE
CARE IN IMPROVING THE QUALITY OF LIFE
Project report submitted in partial fulfillment
Of the requirement for the
Masters of Social Work degree
Submitted by
Job K. Joseph
Reg. No. 11JJAS407
Under the guidance of
Ms. Gayathri G.
KRISTU JAYANTI COLLEGE
K. Narayanapura, Kothannur, Bangalore - 560077
[f .
KRISTU JAYANTI COLLEGE
K. Naraynapura, Kothannur P.O, Bangalore - 560077
Phone: 080-28465611, 28465353
Fax: 080 28445161
CERTIFICATE
This is to certify that this project study entitled ""A study on the effectiveness of
Home based palliative care and hospital based palliative care in improving the
quality of life. ” submitted by Job K. Joseph (11JJAS407) of master of social work
course of Kristu Jayanti college is a bonafide work based on the findings of the
study conducted by the candidate.
Ms. Gayathri G.
Fr. Jose P.J
Fr. Sebastian
Research Guide
Head Department of
Principal
Department ofSocial Work
Social work
Place:
Date:
DECLARATION
I hereby declare that the entire work embodied in this dissertation entitled ‘"A study on the
effectiveness of Home based palliative care and hospital based palliative care in improving the
quality of life. ” Submitted in partial fulfillment of the requirement for Master degree in Social
Work, Bangalore University is based on the result of the research work carried out by me under
the supervision and valuable guidance of Ms. Gayathri G. Lecturer department of social work,
Kristu Jayanti College.
This dissertation or any part of this study has not been previously used for any other university or
institution.
BANGALORE
JOB K. JOSEPH
DATE:
RESEARCHER
9
Acknowledgement
I sincerely wish to express my deep sense of gratitude to all who helped me to complete this
work. My sincere words of gratitude to Ms. Gayathri G. my research guide for her inspiration,
and encouragement, guidance and corrections.
I extend my heartfelt thanks to all the faculty members of the department of social work, Kristu
Jayanti College for their support.
I thank all the medical staffs of In Primary Health Centers and for the support in collection of
data also I thank all the accredited social health workers for their support to visit houses.
I sincerely extend my sense of gratitude to my parents, friends and respondents who have
helped me during various stages of this dissertation.
Place: Bangalore
Job K. Joseph
Date:
Researcher
■»
CONTENTS
CHAPTER NO.
TITLE
i
CERTIFICATE
ii
DECLARATION
iii
ACKNOWLEDGEMENT
iv
CONTENTS
v
LIST OF TABLES
vi
LIST OF FIGURES
I
INTRODCTION
1.1 Palliative Care in India
1.2 Who Provides Palliative Care?
1.3 Home Based Care and Institutional Based
Palliative Care
1.4 Integrated Home Based Care
1.5 Home- Based Palliative Care Program
Goals
1.6 Models of Home Based Care
1.6.1 Single service home based care
1.6.2 Informal home based care
1.7 Benefits of Home-Based Care
1.8 Hospital- Based Palliative Care
PAGE NO.
CHAPTER II
REVIEW OF LITERATURE
CHAPTER HI
RESEARCH METHODOLOGY
CHAPTER IV
INTERPRETATION OF DATA
CHAPTER V
FINDINGS AND CONCLUSION
ANEXURES
1. BIBLIOGRAPHY
2.
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LIST OF TABLES
SL.NO
LIST OF TABLES
4.1
Gender of the patient
4.2
Marital status of the respondent
4.3
Type of disease
4.4
The respondents relief from the treatment
4.5
How did the patient come to know about palliative
care
4.6
Age of the patient
4.7
The respondents need for the care other than the care
provided by the palliative care unit
4.8
Duration of respondent undergoing palliative care
4.9
Type of care receiving the patient
4.10
The respondent’s satisfaction of services provided by
the doctor of palliative care unit
4.11
The respondent’s satisfaction of services provided by
the nurse in palliative care unit
4.12
The respondent's satisfaction of services provided by
the volunteers in palliative care unit
PAGE NO
9
4.13
Quality of life of patients receiving home
based palliative care
4.14
Quality of life of patients receiving hospital
based palliative care
4.15
Quality of life of patients receiving hospital
based and home based palliative care
LIST OF FIGURES
PAGE NO
TITLE
SL.NO
4.1
Religion of the respondents
4.2
Marital status of the respondents
4.3
Figure showing the type of disease of the
respondents in palliative care
4.4
Figure showing how did respondents come to
know about palliative care
4.5
Age of the respondents
4.6
Figure showing the patients need other than the
care provided by palliative care unit
4.7
Duration of respondents undergoing palliative
care
4.8
Type of care receiving the patient
4.9
The
respondent's
satisfaction
of
services
provided by the doctor of palliative care unit
CHAPTER -1
INTRODUCTION
9
INTRODUCTION
Caring of sick people has been a key part of many societies in the world. Since the 4th century,
the rest house, sarai, sanatorium and hot springs were developed as special places to attend to
their needs. The diagnosis of cancer and understanding of its incurability in a majority of
patients, in the first half of 20th century, appeared as new challenges to the medical community.
The pioneering works of Dame Saunders in the United Kingdom drew the attention of the
medical community and the public to the evolution of the palliative care in the 1960s. From the
1980s rapid progress was made in developing palliative care as a discipline in the health care
delivery. In the 21st century, many countries have recognized the importance of palliative care
(Mohantti KB, 2011). However, in the 21st century fifty percent of the cancer patients are cured
and those identified with the advanced stages of cancer lives for many more years so it is critical
challenge to provide them with palliative care to improve their quality of life (Mohanthi, 2013).
WHO defined palliative care as Ci,
“an approach that improves the quality of life of patients and
their families facing the problem associated with life threatening illness, through the prevention
and relief of suffering by means of early identification and impeccable assessment and treatment
of pain and other problems, physical, psychological, and spiritual. DivyaKhosala further explains
that Palliative care is a health care specialty that is both a philosophy of care and an organized,
highly structured system for delivering care to persons with life threatening or debilitating
illness from diagnosis till death and then into bereavement care for the family. Palliative care
improves the health care quality in three domains: the relief of physical and emotional suffering;
improvement and strengthening of the process of patient-physician communication and decision
making; an assurance of co-ordinate continuity of care across multiple health care settings such
as hospitals, home, hospices, and long term care.”
Hence, Palliative care has been widely recognized as a medical specialty with a special emphases
on education, training, clinical practical skill, man power and structured setting (Mohanthi,
2013).
9
1.1 Palliative Care in India
The concept of palliative care is relatively new to India. Together with input from UK, Indian
health care professionals have taken up the enormous challenges of delivering appropriate
palliative care in India. The first palliative care facility was a western-style hospice founded by
an Indian cancer surgeon inspired by St. Christopher’s hospice in London. Subsequent initiatives
included support by WHO to hospital-based clinics wishing to include pain and symptom control
in their cancer centers. Thus, following the western model palliative care was started in India in
the mid-1980s (E, L, & M, 2008).
Although, the history of palliative care in India has the history of more than three decades, the
growth of palliative care in India has been very slow and does not cater to the needs of the
growing population of our country. In consistent with this Kumar (2013) finds that less than 3%
of the advanced cancer patients and 1% of the patients with all incurable disease have any access
to any palliative care in India. And there is a very limited provision for palliative care in India
when taken as a whole. In India where recently initiated National Program for Heath care of
Elderly(NPHCE)aims to develop infrastructure and built capacity of health care providers for
elderly health care, around the world , there is growing concern to achieve sustainable quality of
life.
The concept of “active aging” has also fostered interest in the well being and life satisfaction
dimension; however, the definition of quality of elderly life and its determinants remained a
concern. The poor under poor understanding of elderly life under changing economic and social
norms in India has led to a weak care and support for them. Majority of elderly in India are lives
and work in the unorganized agricultural sector in rural area.(Dongre AR, 2012)In addition to
this Kumar reports that there are less than 130 palliative care units in our country which includes
hospices, hospital based units, out patients’ clinics, home care programs and community based
programs. In a multi method review McDermott finds that the development of palliative care
service in India was uneven and there are 19 states and union territories where palliative care
provision was nominal. Moreover, the palliative care facilities in India are mostly concentrated
in larger cities. He also identified that the major hurdles of palliative care in India were poverty,
population density, geography, workforce development, and limited national palliative care
policy. And he concluded that the adoption of western model of hospices and palliative care in
India cultural context largely failed to cater the need of Indian health care scenario (Seamark,
2000).
Although, the palliative care service in India is very poor, the small southern state of Kerala
stands different to this. Kumar S reports that more than 50% of all the palliative care units in
India is concentrated in this small state which habitats around 3% of its total population. Kerala
has put a bench mark in the history of palliative care delivery by its experiment of Neighborhood
Network in Palliative care characterized by massive community participation and thus ensuring
60% to 80% of palliative care coverage. For the first time in India, a pain and palliative care
policy was declared by the Kerala State government to guide and facilitate the development of
community based home care initiatives under the leadership of local self-governments (LSGs).
The ArogyaKeralam palliative care project was formulated in consonance with the policy that
has been quite successful in initiating such services with community participation in a large
number of LSGI in all parts of Kerala(Jayakrishnan Thayyil, 2012).
The Pain and Palliative Care Society (PPCS) a nongovernmental organization (NGO) began at
Calicut in 1993. An outpatient clinic was set up at the Calicut Medical College. Subsequently, a
memorandum of understanding was signed with the government of Kerala. The government gave
permission to the NGO to work in the premises of the medical college and also agreed to provide
a few non medical staff and medicines and finding the remaining expenses to run the
establishment had to be met by PPCS. Today there are 57 palliative care units spread across the
six northern districts of Kerala which are evolved in the NNPC. These 6 districts have 11 million
people, roughly a third of the state’s population. The three districts of Malapuram, Kozhikode
and Wayanad are almost fully covered. The remaining three, Kannur, Palakkad and Thrissure are
covered.(Anil Paleri, 2005)
Since the inception, it was clear to the founders of PPCS that professionals alone would not be
able to carry the entire weight of the task of looking after chronically ill people but also need the
support of community. The clinic itself began with one volunteer and a part time doctor. Other
volunteers were encouraged to join the initiative, and at that time they were seen as people to
help with the nursing tasks. A volunteer could work in a clinic or home care program only during
the hour in which these programs were run. Hence almost all the volunteers worked in the
clinics, which often were far from their place of residence, and they often worked in isolation as
9
there were few other volunteers from their locality. The first link center of the PPCS was
established in 1996 at Manjeri in the neighboring district of Malappuram. The method of setting
up a new link center was to train a doctor, preferably a team of doctor and a nurse and to
encourage them to set up a palliative care clinic in their area.
MC Dermott identified 138 organizations currently providing hospice and palliative care services
in 16 states or union territories. These services are usually concentrated in large cities and
regional cancer centers, with exception of Kerala, where services are more wide spread. The
Kerala net work has more than 60 units covering a population of greater than 12 million and is
one of the largest networks in the world. In April 2008, Kerala became the first state in India to
announce a palliative care policy.
The Calicut model has also become a WHO demonstration project as an example of high quality,
flexible and low coast palliative care delivery in the developing world and illustrating sound
principles of cooperation between government and NGOs. Can support has 11 home care teams,
each consisting of doctors, nurses and counselors trained in palliative care to cover the different
part of Delhi and national capital regions. The majority of the doctors, nurses and paramedical
professionals working in these centers have rendered exemplary services to deliver palliative
care of cancer and other terminally ill patients, raise awareness about palliative care practice and
educate others.
1.2 Who Provides Palliative Care?
Palliative care can be provided by a number of different health professionals depending on the
illness and the needs and resources of the patient, their family and caregivers. Together,
professionals involved in delivering palliative care generally work in a multidisciplinary team
and may include:
•
Specialist palliative care doctors and nurses
•
General practitioners
•
Specialist doctors - oncologists, cardiologists,
•
Neurologists, respiratory physicians
Nurses
•
Allied health professionals - pharmacists, occupational
•
Therapists, physiotherapists
•
Social workers
Grief and bereavement counselors
Pastoral care workers.
Patients and their families and caregivers should have access to the level of care and support they
need provided by health professionals, trained volunteers and their own communities. A small
number of people experience severe or complex problems as their illness advances. These people
may be referred to a specialist palliative care service where a team of specialist professionals will
work to meet their need (Palliative care Australia).
Palliative care can be provided:
In the home
•
In a hospital
•
In an aged care home
•
In a hospice.
Most people prefer to receive palliative care in the home, but this will depend on many factors
including:
The nature of the illness
•
How much support is available from the patient’s family and community
•
Whether the patient has someone who can care for them(palliative care Australia)
1.3 Home Based Care and Institutional Based Palliative Care
The rise of hospice and palliative care in its distinctly modern guise is generally traced to the late
1950s and early 1960s when there is evidence in many countries of a new interest in the
improvement of care for dying people. In the wake of developments at the local level and as
'i
hospice and palliative care services began to establish in individual settings, there quickly
emerged a range of international association to consider promote and develop the work of
hospice palliative care, along with the cognate field of pain medicine. These organizations
focused on professional development, education and training; on clinical innovation and
research; on lobbing and advocacy. It is estimated that hospice or palliative care services now
exist or are under development, on every continent of the world-in around 100 countries. The
total number of hospice or palliative care initiatives is in excess of 8,000 and these include
inpatient units, hospital based services, community based teams, day care centre and other modes
of delivery. There is much to celebrate about these achievements, in many cases development
has been hard won and have required enormous efforts for their realization. (Clark, 2003).
The studies conducted by Jayakrishnan Thayyil and Jeeja MC suggest that the interface between
institutional based care and home care needs more exploration and prospective study. According
to the World Health Organization (WHO) home based palliative care refers to the provision of
health services by formal and informal caregivers within the home. The aim of home based care
is ultimately to promote restore and maintain, a person’s maximum level of comfort, function
and health including care towards a dignified death. The WHO foresees home based care as an
integral and integrated aspect of health care. In essence, home based care can be considered as an
alternative to traditional institutionalized care, focusing on palliative care in the home. The
training that care givers received was very much sufficient to help them to provide excellent
services under the circumstances. Refresher course is needed for new personnel, and
management skills are necessary for supervisor to be able to organization properly.
Home based care models in general adopt a holistic approach to care. Physical, social,
psychological, emotional, economic and spiritual factors are all taken in to account and
considered collaboratively with and within the community setting. Home based care modals also
aim to offer basic and essential components of primary health care adhering to basic principles in
health care and development (Moetlo GJ, 2011). Home based palliative care services are
becoming increasingly popular with care being taken to the doorstep of the patient. Ideally, this
is where people are most comfortable at the end of their lives, surrender by their loved ones.
It is also well suited to conditions in India where a family member is usually available and
willing to nurse the sick person. It is also coast effective as it does not entail doctors and nurses’
<»
fees and travelling to the hospital repeatedly for follow up visits and unnecessary investigations
and treatments. MC Dermott identified 88 home care programs rather than services that provide
occasional visits (Divya Khosala).
1.4 Integrated Home Based Care
This model works by linking all service providers with patients and their families in a continuum
of care .the aim is to embrace mutual support between the different systems: patient, family,
home based carer, hospital, clinic, and NGO. This system allows for referral between all partners
as trust and capacities among these partners develop. The patient and family are the focus of the
care and support. The small group is supported by a larger network of services (home based
carers, clinics, hospital), and the larger community (Uys and Cameron, 2003). The care given is
based on home based care and palliative care standards. Its primary purpose is the prevention of
illness, and related complications, by increasing openness and understanding among participants,
hereby changing behavior (Louden, 1999). An early review of the impact of home care found
that there was no effect on mortality and that it may reduce entry to long-term residential care.
However, the review contained few randomized controlled trials (Hedrick et al. 1989).
1.5 Home- Based Palliative Care Program Goals
The home-based program is designed to improve care for patients with advanced complex illness
in these ways:
•
Improve symptom management and quality of life
•
Help patients clarify their values to direct care decisions
•
Avoid unnecessary hospitalization through care coordination and medical management
•
Develop strong linkages with the PCP to ensure a collaborative approach
1.6 Models of Home Based Care
Thus far, most home based care services have been established through unsystematic, needs-
based efforts (Uys and Cameron, 2003). Home based care organizations recognize the
importance of providing home based carers with adequate training
9
These training should include:
General basic nursing care
Training primary caregivers in home based care
Counseling services of patients and families
Assessments of basic needs (food, shelter, cloths etc)
A number of different systems on home based care have been reported on in the literature
namely Uys and Cameron (2003); Louden (1999); and Defilippi (2005):
1.6.1 Single service home based care
In this model, one service provider (a hospital, a clinic, a NGO, or a FBO) organizes home based
care by recruiting volunteers, training them, and linking them to patients and their families at
home (Uys and Cameron, 2003). While this is largely how most home based care initiatives
started out, it soon became evident that networking with other stakeholders was crucial if the
intention was to provide holistic and adequate home based care.
1.6.2 Informal home based care
In this model, families are helped to care for their sick members in their own homes, with the
informal assistance of their own social network. Nobody has any specific training or external
support, and there is no structured or organized intervention (Uys and Cameron, 2003). Informal
home based care is very strenuous because those home based cares have to deal with the burden
of lack of necessary skills, training, knowledge and emotional tenacity to care and support their
patients.
1.7 Benefits of Home-Based Care
As discussed by Uys and Cameron (2003), the benefits of home based care may be summarized
as follows:
•
It affords the patient and the family time to come to grips with the illness, and the
impending death of the patient.
9
•
It is less expensive for the family because problems with transport to the hospitals/
clinics, time spent on hospital visits, and other related costs are reduced. Relatives can
care for the patient while doing other chores.
•
Care is more personalized, and the patient is likely to feel less isolated from family and
friends.
•
People prefer to face ill health and death in familiar surroundings rather than a clinical
hospital ward.
•
Home based care is less expensive for the country than institutional options (hospitals,
hospices) since periods of say at those institutions are reduced.
Kaiser Permanente developed a home-based model of palliative care that uses an
interdisciplinary team of providers to manage symptoms and pain, provide emotional and
spiritual support, and educate patients and family members on an ongoing basis about changes in
the patient's condition. One randomized controlled trial and one comparison-group study showed
that the program increases patient satisfaction, increases the portion of patients dying at home
rather than in the hospital, and reduces emergency department visits, inpatient admissions, and
costs.
1.8 Hospital- Based Palliative Care
Hospital-based palliative care comes into play following a patient's hospital admission, and prior
to discharge. It is important to remember that hospitals are acute facilities that strive to restore
patients to optimum function. Very simply, this means that they focus on therapeutic,
rehabilitative measures. When that is not a viable option due to a patient’s terminal or life
limiting disease, the hospital-based palliative care team can assist the physician in structuring a
plan of care that strives to maximize quality of life while managing pain and symptoms. In this
situation, the palliative care team might suggest an early hospice referral, as the patient would be
leaving the hospital setting. Generally, while the patient's doctor and the hospital-based palliative
care team make the referral, the patient and family also participate in the decision, so that the
outcome best benefits and supports the patient's desires.
**
The physician must be confident the hospital-based palliative care team incorporates holistic care
at its very base, including ensuring the patient's physical comfort, providing emotional and
psychological support, and supporting shared decision-making. In addition, the patient's
physicians should also be confident that the hospital-based palliative care team coordinates the
care across different care settings and involves the patient and family as appropriate.
The physician should expect the following from the hospital-based palliative care team:
•
Evidence-based symptom palliation and psychological support
•
Shared decision-making that supports both the patient and the family or caregiver
•
Dignity and respect regarding the patient’s cultural values
•
Practical, financial and legal assistance for patients and families
Coordination of care across the health care setting that helps patients move from one setting to
another (e.g., from hospital to home) in a seamless fashion The hospital-based palliative care
team can work closely with the local hospice agency once patients have completed all therapies
and have a prognosis of six months or less. I have found that when working with physicians,
patients and families who are considering hospice care in the last months, everyone appreciates a
coordinated health care approach, which helps guide the patient to navigate the system,
providing appropriate care at each stage. A hospice nurse on the hospital-based palliative team
can advise as to when the patient would benefit more from hospice services, and advocate for the
patient and his or her family regarding those services.
The hospital-based palliative care team offers very important services for the patient, but those
services vary from hospital to hospital, and not all hospitals have such teams. Hospice services
and team members are the same, however, from hospice agency to hospice agency, as mandated
by Medicare. Both hospital-based palliative care teams and hospice agencies strive to provide an
interdisciplinary approach to care that takes into account the patient's physical, social,
psychological and spiritual well-being. Whether a patient receives care from the hospital-based
team
9
or the hospice team, both must strive to provide patient and family-centered competent and
compassionate care. This allows for a life closure with dignity and respect—hallmarks of all
palliative care.
SUMMARY
The palliative care movement is one example of how health services can go well beyond the
biomedical model of health and be seen as an affirmative act of living with dignity even whilst
accepting that death is an inevitable part of life. Health related quality of life is increasingly used
in health care research, particularly in palliative care. An objective of present study is to evaluate
effectiveness of palliative care service and to compare the effectiveness of services receiving
through home based and hospital based palliative care in Thrissur district. Palliative care has
been recognized as essential health care which should be comprehensive, accessible and
appropriate to the community they serve. Family is the most cherished social institution in India.
The majority of the patients like to spend their last years of life with their family members.
Social, psychological, religious and spiritual net works are strongest at home. If it is lacking in
that family home based palliative care is essentials. At the same time hospital based palliative
care also play major role in caring of sick people. So the researcher would like to conduct a
comparitative study on home based palliative care and hospital based palliative care.
•»
CHAPTER - II
REVIEW OF LITERATURE
9
REVIEW OF LITERATURE
The review explores the definition of home based care and the history of this model of care. An
overview of the different home based care models is highlighted and a comparison is made of
home based care and hospital care.
PALLIATIVE CARE
Palliative care improves the quality of life of patients and families who face life-threatening
illness, by providing pain and symptom relief, spiritual and psychosocial support to from
diagnosis to the end of life and bereavement. Palliative care:
•
Provides relief from pain and other distressing symptoms;
•
Affirms life and regards dying as a normal process;
•
Intends neither to hasten or postpone death;
•
Integrates the psychological and spiritual aspects of patient care;
•
Offers a support system to help patients live as actively as possible until
death;
•
Offers a support system to help the family cope during the patients illness
and in their own bereavement;
•
Uses a team approach to address the needs of patients and their families,
including bereavement counseling, if indicated;
•
Will enhance quality of life, and may also positively influence the course
of illness; is applicable early in the course of illness, in conjunction with
other therapies that are intended to prolong life, such as chemotherapy or
radiation therapy, and includes those investigations needed to better
understand and manage distressing clinical complications (WHO).
When there is no cure for an illness, palliative care tries to make the end of a person’s life
as comfortable as possible. This is done by attempting to relieve pain and other distressing
symptoms while providing psychological, social and spiritual support. Carers and family
are also offered emotional and spiritual support. This is called a 'holistic’ approach to care.
*»
Some of the literatures collected from reliable sources and relevant to study mentioning
below:
1. Kerala state adopts palliative care in Primary Health Center; Express health
care ; article(September 2009)
In a study done in Malappuram district of Kerala, it was found that around 40 per cent of
those people who are dying would have benefited from applying the principles of
Palliative Care (PC) in their management. In Kerala, with a population of 32 million and
a crude death rate of 6.3 (Reference: Census 2001) around 80,000 dying patients and their
families would be benefited each year. To this, if we add the number of people living for
years with chronic conditions the total number will be much more. Taking cue of this, in
a revolutionary decision, the Kerala Government has issued an order that integrates PC
with the primary healthcare system run by the Health and Family Welfare Department.
This step is a follow-up on the PC policy issued by the Government in 2008. ’’The
Government of Kerala has probably become the first Government in the whole world to
officially integrate PC into primary healthcare," commented Dr Suresh Kumar, Director,
Institute of Palliative Medicine, Kerala. The circular has laid down a series of guidelines
for the delivery, administration and review of PC from the PHC to the Directorate of
Health Services.
At present, there are around 100 palliative care units in Kerala. The guidelines stress the
role of PHC, as the epi-centre of the actual delivery of PC. An elaborative reporting
system has been put in place. It also establishes the procedures for fixing responsibilities.
The PHC will play a strategic role in PC management. At the PHC, there will be an
outpatient clinic atleast once a week, medicines will be issued to the patients for upto six
weeks (unlike three-five days for ordinary patients), and a trained field staffer would go
on home visits, on rotation-basis. The PHC will also liaise with the local panchayats or
municipalities.The District Medical Officer (DMO) will ensure that doctors, nurses and
the field staff are adequately trained in PC.
■»
2. Research focus in palliative care ; Bidhu K. Mohanti, Indian Journal of
palliative care, medknow publication 2011, January
Research in health care has always fascinated the mankind. The benefits
ofpenicillin, safety of surgery under anesthesia, global eradication of small pox by
vaccination, discovery of X-rays, and our recently unfolding human genome
project are some of these examples of medical research. Advances in palliative care
are made with a focus to address the quality of medical practice and commercial
establishments who have a stake in the palliative care practice.
Challenges in practicing palliative care
The reasons to conduct research in palliative care are that there at many levels within our
health system.
Fifty percent of the patients with cancer are not cured of their disease. However, with
improved treatments, even those with advanced stage may live for many years. Providing
palliative care for those who are incurable, and for patients in advanced stage concurrent
with anticancer therapy, has been proposed to improve their quality of life.
The limited availability of palliative care service structures within a hospital or outside
make it difficult for the patients and their families to go through the terminal phase of
disease and dying. This is further compounded by the lack of an adequate number of
health professionals trained to deliver the palliative and end-of-life care. These
infrastructure and personnel deficits are observed even recently in many developed
countries like the USA and Germany.
The physicians and nurses who deliver community health care are not educated and
trained in the domains of palliative care, whereas a large part of managing the patients
with life-threatening diseases like cancer and other end-stage conditions require medical
attention nearer to their homes.
Availability and procurement of morphine, an essential drug in palliative care, is often an
obstacle in many countries. Although relief from pain, distressing symptoms and dignity
in death is considered as rights of patients with advanced cancer and other end-stage
diseases, recent reviews and observational studies describe considerable dissatisfaction,
indicating that there are still opportunities for improvement.
3. Home-based palliative care in Kerala, India: the Neighbourhood Network in
Palliative Care.
Libby Sallnow, Suresh Kumar, Mathews Numpeli, Neighbourhood Network in Palliative
Care, Institute of Palliative Medicine, Calicut, Kerala, India
The Initiation of the Neighbourhood Network in Palliative Care.
In 1993, the Pain and Palliative Care Society (PPCS) was set up in the grounds of a
medical college in northern Kerala, a clinic committed to relieving the pain and suffering
of patients with advanced disease.
Although a home-care service was offered as an extension of the out-patient clinic, it
became apparent that this model was not adequate to reach all those in need, and working
within a biomedical paradigm of disease meant important aspects of patients’ suffering
were not being addressed. It was this recognition that resulted in the formation of the
NNPC in 2001.Kerala has a long tradition of social activism and many groups already
involved in community service were interested in helping deliver palliative care services
in their area. With the support of the medical and nursing teams from PPCS and link
centers, community owned units were set up in rural areas. The community embraced the
new services and the training courses to become a volunteer quickly developed waiting
lists. The rights and needs of the terminally ill were taken on by community members. In
the words of one community volunteer: ‘In many gramsahbas (local government
meetings) they have begun to hear raised voices not only about the state of the roads and
electricity, but of the care for the terminally ill’.
Palliative care in Kerala has now become a social movement. A regional Palliative Care
Day was created on 15 January 2004, marked with functions at local and regional level.
<»
The media have been quick to endorse the movement. The local language newspaper,
Malayala Manorama, the largest circulating regional newspaper in India with an
estimated readership of over 9 million, has run a 3-month campaign in collaboration with
the Institute of Palliative Medicine entitled ‘Njangalundu Koode’ (We are with you). The
response was overwhelming, with over 50,000 calls in the first 3 weeks of the campaign
alone.8 The campaign has recently won national awards for developmental journalism.
Palliative care has become an advantageous movement for politicians to support and
many local political candidates include support for the local centre as part of their
manifesto. Due to this public endorsement, the Government of Kerala has pledged to
support the movement. In 2008, the Government announced the first national policy on
palliative care for Kerala. This was written in discussion with leaders of the NNPC and
placed home care at the centre of the policy.
4. Impact of a home-based social welfare program on care for palliative patients in
the Basque Country (SAIATU Program), BMC Palliative Care 2013,
Emilio Herrera Molina, Roberto Nuno-Solinis, Gorka Espiau Idioaga, Silvia
Librada Flores, Naomi Hasson and Juan F Orueta Media.
In the developed world, some 10,000 people per million population die every year. Some
70% of the total population lives through a period of terminal illness lasting several
months before their eventual death, whether it be a type of cancer (2,500 cases per
million population) or the final stage of deterioration of non-oncological illnesses
(approximately 4,500 cases per million population). It has been accepted internationally
that the largest proportion of healthcare costs incurred by a citizen are generated in the
final months of life. We are therefore discussing the largest source of costs to the
healthcare system, an issue to which insufficient attention has been paid. In these cases,
both the symptoms themselves and the complexity of accompanying circumstances cause
a high degree of suffering in the patient and a social and family crisis in his immediate
environment, as well as incurring the largest share of healthcare expenditure in the life of
each respective patient.
Palliative Care (PC) has been scientifically demonstrated as a truly effective tool in both
welfare and organizational terms, complementing appropriate medication and medical
care with psychological, social and spiritual support for patients and their careers.
The SAIATU in-home care program is a social innovation project launched in February
2011 in Guipuzcoa, with the aim of providing a set of in-home social support services to
complement clinical palliative care, in order to improve comprehensive care for people
with advanced and terminal illness and their families. This has entailed widening the
scope of the classic model of primary care in palliative patients, expanding the traditional
model to a cross-cutting action framework.
Currently, the program provides care in complex social situations, or in cases requiring
attendance by clinical teams to provide appropriate symptom control, which requires the
assistance of a social support network to facilitate the interventions of Osakidetza
palliative care teams.
This new care model for Palliative Care patients forms part of an innovative approach,
which aims to co-ordinate social services and healthcare in the field of palliative care.
This approach is currently thriving in other health systems internationally, including the
Canadian and British health systems, and seeks to provide both the best possible
comprehensive care and efficiency in the provision of complementary health and social
services .
SAIATU has been the first such experience in Spain, and the first internationally which
combines the quantification, analysis and impact assessment of the reduction of
healthcare resource usage by end-of-life patients, based on a pilot study of in-home social
care for palliative care patients in the Basque Country.
The evaluation of the program, conducted in January 2012, has attempted to compare the
difference in the intensity of health care provided to end-of-life patients in traditional
services and in specialised Palliative Care services, but, for the first time, adding to the
second group the effect of a social service trained in Palliative Care.
SAIATU could become a benchmark for an innovative model of home-based palliative
care, focusing on the complementary aspects of healthcare; namely, social welfare and
companionship. It is the first program to define a specific portfolio of services directed at
the social welfare and support of end-of-life patients. This will allow the creation of new
professional profiles to carry out this type of work, as well as clarifying which
capabilities should be fostered in the training of in-home support staff, so that in the
future they will be able to care for patients with advanced disease and high levels of
dependency (a basic tool to cope with the socio-demographic changes we are currently
undergoing).
The current project could be a graphic demonstration of an important solution to
improved efficiency in the health system, through investment in resources outside the
health system; in this case, in the social sector. Should the current hypothesis be
confirmed, the creation of a reserve of appropriately trained home care professionals
would lead to a more community-based model of healthcare, resulting in a more
economical expenditure of the total resources used in the integrated care process.
5. Home-based functional walking program for advanced cancer patients receiving
palliative care: a case series. Published on May 11, 2013.
Sonya S Lowe, Sharon M Watanabe, Vickie E Baracos and Kerry S Courneya
Among the most common distressing symptoms facing patients with advanced cancer is
loss of physical function. Its underlying etiology is multifactorial, with increasing fatigue,
muscle wasting and generalized debility all contributing to this phenomenon. Loss of
physical function impedes the patient’s ability to perform activities of daily living, and
increases dependence on caregivers leading to additional emotional and psychological
burden The importance of keeping mobile is linked to maintaining independence and
overall quality of life [QoL] in patients with advanced cancer. Increasing attention has
been given to physical activity as a QoL intervention in cancer patients. Physical activity
interventions can improve cancer-related fatigue and physical functioning in early stage
cancer patients. However, these benefits have not been confirmed for patients at later
stages of cancer. There is preliminary evidence that select patients with advanced cancer
express willingness to participate in a physical activity intervention, with positive benefit
on some supportive care outcomes.
•»
The aim of this study was to examine the initial development and pilot testing of a
physical activity intervention in patients with advanced cancer receiving palliative care.
Based on our pilot survey data, there was a majority preference for home-based, solo
interventions, with walking being the most preferred activity. Therefore a modified
home-based functional walking program was designed to incorporate the specific
physical activity preferences of this sample, and a similar recruitment strategy was
adopted.
There are a number of feasibility issues deserving of attention from this study. From our
pilot survey study, we were able to recruit 50 patients over a 7 month period, using the
same eligibility criteria and local recruitment strategy, however, we were only able to
recruit 9 patients over a 6 month period. A total of 504 patients were screened through
the RPHCP and CCI outpatient radiotherapy units on behalf of all palliative care research
studies that were open for accrual during that 6-month period, however only 15%
(96/504) consented to being contacted with regards to this particular study. In both
RPHCP and CCI settings, the first contact was such that the patient’s interest in being
contacted by the study coordinator took precedence over obtaining physician-estimated
survival; those patients who refused, therefore, may not have fulfilled all eligibility
criteria at the time of initial screening of the 96 patients who consented to being
contacted by the study coordinator, 53% (51/96) fulfilled all eligibility criteria for this
study. Therefore of all patients who consented to being contacted by the study
coordinator and who met all eligibility criteria for this study, our accrual rate was 18%
(9/51). Locally, this accrual rate is comparable to Hutton et al.’s study of dietary intake in
151 patients with advanced cancer, wherein the authors reported an estimated 21%
accrual rate from both the CCI and RPHCP. Elsewhere, Porock et al. reported a
recruitment rate of 46% (11/24) in their pilot study of 4-week home-based exercise
program in home hospice care patients, with incomplete information as to attrition rates
and reasons for withdrawal. Oldervoll et al. reported a recruitment rate of 58% (231/400)
in their recent RCT, however the reasons behind refusal to participate were not reported;
36% of the intervention group, versus 23% of the control usual care group, were lost to
follow-up primarily due to disease progression. Compared to the 104-day median
survival of our pilot survey sample the median survival of the 9 consented participants in
•»
this study was 92 days. It is therefore likely that our participants were further along the
cancer trajectory than those of Oldervoll et al. Untimely attrition over a 6-week period in
this population with such limited prognosis is not unexpected.
From our pilot survey, the majority felt willing and able to participate in a physical
activity intervention. The ability to participate in a physical activity program, however,
may fluctuate depending on patient-reported symptoms: 69% (35/51) of eligible patients
declined consent to the study because of severe symptoms, with fatigue being the most
common reported symptom. These findings concur with Mercadante et al.’s prospective
study of 400 palliative home care patients with a mean survival of 52 days, wherein there
was an increase in fatigue scores over time, with a peak in symptom intensity and
frequency at the lowest levels of Kamofsky performance status of the 9 patients who
enrolled in our study, 6/9 dropped out with the most common reason being admission to
acute care for severe symptoms. This rate of attrition is higher when compared to large
palliative care trials; Oldervoll et al’s recent RCT reported that 36% of the intervention
group, versus 23% of the control usual care group, were lost to follow-up, primarily due
to disease progression. In contrast, 5/6 dropouts occurred within 4 weeks of starting our
physical activity intervention. Given the shorter median survival of our pilot survey
sample, consideration was given to maintain the intervention as long as it was feasible
and safe for the patients.
6. Innovative models of home-based palliative care
MARGHERITA C. LABSON, MICHELE M. SACCO, MS, DAVID E. WEISSMAN, MD, BETSY
CORNET, FACHE, BRAD STUART, MD, CLEVELAND CLINIC JOURNAL OF
MEDICINE VOLUME 80 • E-SUPPLEMENT 1 JANUARY 2013
Palliative care means patient- and family-centered care that optimizes quality of life by
anticipating, preventing, and treating suffering. Palliative care throughout the
continuum of illness involves addressing physical, intellectual, emotional, social, and
spiritual needs and [facilitating] patient autonomy, access to information, and choice.
At its core, palliative care is a field of medicine aimed at alleviating the suffering of
patients. As a “philosophy of care,” palliative care is appropriate for various sites of
care at various stages of disease and all ages of patients. While hospice care is defined
by the provision of palliative care for patients at the end of life, not all palliative care is
■»
hospice care. Rather, palliative care is an approach to care for any patient diagnosed
with a serious illness that leverages expertise from multidisciplinary teams of health
professionals and addresses pain and symptoms.
Palliative care addresses suffering by incorporating psychosocial and spiritual care with
consideration of patient and family needs, preferences, values, beliefs and cultures.
Palliative care can be provided throughout the continuum of care for patients with
chronic, serious, and even life-threatening illnesses. 1 to a degree, all aspects of health
care can potentially address some palliative issues in that health care providers ideally
combine a desire to cure the patient with a need to alleviate the patient’s pain and
suffering.
Many Medicare-certified home health agencies also operate Medicare-approved hospice
programs. Home health agencies have a heightened perspective on patients’ palliative
care needs. Because of the limited nature of the Medicare hospice benefit, home health
agencies have built palliative care programs to fill unmet patient needs. Home health
agencies often provide palliative care to patients who may be ineligible for the hospice
benefit or have chosen not to enroll in it. These programs are particularly attractive to
patients who would like to pursue curative treatment for their serious illnesses or who are
expected to live longer than 6 months.
Home health patients with advancing or serious illness or chronic illness are candidates
for a palliative care service. For these patients, the burden of their illness continues to
grow as distressing symptoms begin to more regularly impact their quality of life. As
they continue curative treatment of their illness, they would benefit from palliative care
services that provide greater relief of their symptoms and support advanced care
planning. Palliative care interventions become an integrated part of the care plan for these
patients. Home health agencies serving patients with chronic or advancing illnesses will
see care benefits from incorporating palliative care into their team’s skill set.
Two innovative examples of home health-based programs that include a palliative care
component have been reported in peer-reviewed literature to date: Kaiser Permanente’s
In-Home Palliative Care program and Sutter Health’s Advanced Illness Management
(AIM) program.
7. Hospital-Based Palliative Care Consultation: Effects on Hospital Cost
Joan D. Penrod, Ph.D.,1 Partha Deb, Ph.D.,2 Cornelia Dellenbaugh, M.P.H.,1
James F. Burgess, Jr., Ph.D.,3 Carolyn W. Zhu, Ph.D.,1 Cindy L. Christiansen, Ph.D.,4
Carol A. Luhrs, M.D.,5 Therese Cortez, M.S.N., N.P., ACHPN,6 Elayne Livote,
M.S.,1 Veleka Allen, M.S.,1 and R. Sean Morrison, M.D.7
Context: Palliative care consultation teams in hospitals are becoming increasingly more
common. Palliative care improves the quality of hospital care for patients with advanced
disease. Less is known about its effects on hospital costs.
Objective: To evaluate the relationship between palliative care consultation and hospital
costs in patients with advanced disease.
Design, setting, and patients: An observational study of 3321 veterans hospitalized with
advanced disease between October 1,2004 and September 30, 2006. The sample includes
606 (18%) veterans who received palliative care and 2715 (82%) who received usual
hospital care. October 1, 2004 and September 30, 2006.
Main outcome measures: We studied the costs and intensive care unit (ICU) use of
palliative versus usual care for patients in five Veterans Affairs hospitals over a 2-year
period. We used an instrumental variable approach to control for unmeasured
characteristics that affect both treatment and outcome.
Results: The average daily total direct hospital costs were $464 a day lower for the 606
patients receiving palliative compared to the 2715 receiving usual care ( p<0.001).
Palliative care patients were 43.7 percentage points less likely to be admitted to ICU
during the hospitalization than usual care patients ( p<0.001).
Comments: Palliative care for patients hospitalized with advanced disease results in
lower costs of care and less utilization of intensive care compared to similar patients
receiving usual care. Selection on unobserved characteristics plays an important role in
the determination of costs of care.
Palliative care during hospitalizations for advanced disease was associated with
significantly lower direct hospital costs, including costs for pharmacy, nursing,
laboratory, and radiology compared to costs for usual care patients with advanced
disease. Our findings are consistent with a recent multicenter randomized controlled trial
(RCT) showing that patients with life-limiting illness randomized to an inpatient
palliative care service had fewer ICU admissions on readmissions and lower costs
compared to patients randomized to usual hospital care.42 Our results also fit with a large
multicenter
observational
study
by
Morrison
and
colleagues43
demonstrating
significantly lower overall hospital, ICU, and laboratory costs for patients receiving
palliative care consultation compared to propensity score matched usual care patients.
8. Palliative Care: A Long-Term Care Perspective
by Bridget Wohlers, MSN, GNP-BC, ACHPN, Karen Roth, MSN, ANP-BC,
ACHPN, & Linda Janelli, RN, BC, EdD
Posted on: November 14, 2012
Demographics demonstrate that the fastest growing segment of our society are those
who are 85 years or older. While most older adults would acknowledge that given the
choice they would prefer to die in their own home, many will die in long-term care
facilities. The prediction is that by 2020, 40% or 2 out of 5 older adults will die in a
nursing home. Numerous studies have demonstrated the failure and/or the inability of
these facilities to meet the palliative and end-of-life needs of the residents they serve.
Palliative care, which is often confused with hospice care, is a philosophy of care with a
unique set of interventions intended to improve and enhance quality of life in order to
provide a ’’good” death. ^The World Health Organization defines palliative care as "an
approach to care which improves quality of life of patients and families facing life
threatening illness, through prevention, assessment and treatment of pain andotber
physical, psychological, and spiritual problems?^ One of the fastest growing trends is
hospital palliative care. According to data collected by the Center to Advance Palliative
Care, the National Palliative Care Research Center, and the American Hospital
Association, about 63% of hospitals now have palliative care teams. Less is known
about palliative care in the nursing home environment. Many long-term care facilities
are beginning to view palliative care as a subspecialty that needs to be included in their
provision of care. Currently, federal regulations often emphasize, and reimburse for
curative efforts rather than for end-of-life interventions. This has promoted a strong,
ingrained culture of aggressive medical treatment in the nursing home environment. In
the future, the hope is that long-term care residents with a life expectancy of six months
or less can navigate a seamless transition from palliative care strategies to hospice
services.
In February 2011, New York became the second state to enact a law requiring health
care providers to disseminate information on end-of-life options to terminally ill
patients. The Palliative Care Information Act (PCIA) states that "If a patient is
diagnosed with a terminal illness or condition, the patient's attending health care
practitioner shall offer to provide the patient with information and counseling regarding
palliative care and end-of-life options appropriate to the patient, including .. prognosis,
risk and benefits of the various options; and the patient's legal rights to comprehensive
pain and symptom management". The goal of PCIA is clear, but what is still unclear is
the interpretation of the law - is it enforceable, and will it be effective. If nothing else
the PCIA has focused attention on the need for an open and honest discussion about
end-of-life. The purpose of this descriptive study was to determine the knowledge,
practice, and attitudes of nursing homes in New York State regarding the
implementation
of
the
Palliative
Care
Information
Act.
9. COMPARISONS BETWEEN HOSPITAL-BASED CARE AND
HOME
BASED CARE (BEECHEY, J.2004:76)
Hospital-Based Care
Home-Based Care
High costs to set up and run
Low cost in comparison to hospitals
Focus of care is on the disease
Focus is the whole person
Quality of medical care is good
Quality of medical care is good
Non-medical care is not available
Non-medical care is available
Relationships exists with medical
staff only
The patient is part of a web of relationships
including medical staff and volunteers
Awareness and prevention are
regarded as separate activities
Awareness and prevention are integrated
Patients are referred to outside Patients are helped to access hospital
organizations to access long-term, treatment when needed.
holistic care.
10. BENEFITS OF HOME-BASED CARE: Uys and Cameron (2003)
•
It affords the patient and the family time to come to grips with the illness, and the
impending death of the patient.
•
It is less expensive for the family because problems with transport to the hospitals/
clinics, time spent on hospital visits, and other related costs are reduced. Relatives
can care for the patient while doing other chores.
•
Care is more personalized, and the patient is likely to feel less isolated from family
and friends.
•
People prefer to face ill health and death in familiar surroundings rather than a
clinical hospital ward.
Kaiser Permanente developed a home-based model of palliative care that uses an
interdisciplinary team of providers to manage symptoms and pain, provide emotional
and spiritual support, and educate patients and family members on an ongoing basis
about changes in the patient's condition. One randomized controlled trial and one
comparison-group study showed that the program increases patient satisfaction,
increases the portion of patients dying at home rather than in the hospital, and reduces
emergency department visits, inpatient admissions, and costs. Home based care is less
expensive for the country than institutional options (hospitals, hospices) since periods of
say at those institutions are reduced.
CHAPTER - III
RESEARCH METHODOLOGY
RESARCH METHODOLOGY
TITLE OF THE STUDY
A comparative study on the effectiveness of home based palliative care and hospital based
palliative care in improving the quality of life
STATEMENT OF THE STUDY
The goal of palliative care is to improve the quality of both patients and families by responding
to pain and other distressing physical symptoms, as well as to provide nursing care and psycho
social and spiritual support. There is relatively little formal knowledge about patients needs. It
may include caring out inmates’ task such as washing, helping people to dress and go to toilet, or
heavy task such as lifting. This kind of caring is usually performed by people with close kinship
ties, often living in the same house and motivated by love and a desire to keep an older person
out of an institution. Palliative care is provided by a team of doctors, nurses, counselors, social
workers, and volunteers. So the researcher trying to evaluate the effectiveness of home based
palliative care and hospital based palliative care. Home based care models in general adopt a
holistic approach to care. Physical, social, psychological, emotional, economic and spiritual
factors are all taken in to account and considered collaboratively with and within the community
setting. Home based care modals also aim to offer basic and essential components of primary
health care adhering to basic principles in health care and development .so though this research
the researcher evaluating the effectiveness of home based palliative care and hospital based
palliative care.
SIGNIFICANCE OF THE STUDY
Everyone has the right to security in the event of unemployment, sickness,, disability,
widowhood, old age or other
lack of livelihood in circumstances beyond his or her
control.(Article 25 united nations universal declaration of human rights,2011 ). Through this
study evaluating the effectiveness of home based palliative care and hospital base palliative
care. The main aim of palliative care is to improving the quality of life of patients and supports
them in all the levels of life. Home based palliative care and hospital based palliative care
improving the quality of life. Palliative care aims to help the patient live as well as possible.
Palliative care offers support to help family and caregivers manage during the patient’s illness
and in bereavement. As a person receiving palliative care, the patient is an important partner in
planning their care and managing their illness. When people are well infonned, participate in
treatment decisions and communicate openly with their doctors and other health professionals,
they help make their care as effective as possible. People can continue treatment aimed at
curing illness. The focus of palliative care is maintaining quality of life and meeting the needs
of the patient, their family and caregivers. In Thrissur district there are 14 palliative care
centers including both home based palliative care and hospital based palliative care. In this
situation understanding the quality of life of palliative care patients is very significant.
OBJECTIVES
GENE
L OBJECTIVE
To evalu;
the effectiveness of home based palliative care and hospital based palliative
care.
SBECEFte'OBJECTIVES
•I To study the socio-demographic details of the patients under palliative care
•
To understand the quality of the life of the patients in home based palliative care.
•
To understand the quality of the life of the patients under hospital based palliative care.
•
To compare the quality of life of the patients under home based palliative care and
hospital based palliative care.
•
To understand the socio-demographic correlates of the quality of life of the patients
under home based palliative care and hospital based palliative care.
HYPOTHESIS
Hypotheses are usually considered as the principal instrument in research. Its main function is
to suggest new experiments and observation. In social science where direct knowledge
parameters is rare, hypothesis testing is often used as strategy for deciding whether a sample
data offers such support for a hypothesis so that generalizations can be made. Thus testing the
hypothesis enables us to make probability statements about population parameters. The
hypothesis may not be proved absolutely, but in practice it is accepted if it has withstood a
critical testing (Kothari, 1990). The following were the hypothesis formulated for the present
study.
Hl: There is a significant difference between the quality of life experienced by the
patients under home based palliative care and hospital based palliative care.
H2: Home based palliative care is more effective in improving the quality of life of
the patients than the hospital based palliative care.
H3: There is a significant relationship between the socio-demographic variables and
the quality of life experienced by the patients in home based palliative care and
hospital based palliative care.
DEFINITIONS
TH
>
TICAL DEFINITION
Palliative care
The WHO
med palliative care as a,
“an approach that improves the quality of life of
patients and their families facing the problem associated with life threatening illness, through
the prevention and relief of suffering by means of early identification and impeccable
asses:
>
ent and treatment of pain and other problems, physical, psychological, and spiritual.”
•me based palliative care
According to the World Health Organization (WHO), home-based care refers to the
provision of health services by formal and informal care givers within the home. The aim of
home based care is ultimately to “promote, restore and maintain a person’s maximum level of
comfort, function and health, including care towards a dignified death.”
> Hospital Based
lliative Care
Hospital based palliative care refers to the provision of health services by formal care givers
within the hospital. The aim W hospital based care is ultimately to “promote, restore and
maintain a person’s maximum leyel of comfort, function and health, including care towards a
dignified death.”
\
> Quality of Life
Quality of life (QOL) in the context of Advanced, progressive, incurable illness, is defined as
the subjective experience of an individual living with the interpersonal, psychological and
existential or spiritual challenges that accompany the process of physical and functional decline
and the knowledge of impending demise (Byock hnd Merriman, 1998).
OPEEATIONAL DEFINITION
>
Palliative care
In this study palliative care is a type of care given to the terminally ill persons. It is a treatment
given to the patients from the hospital, clinic or home. The age group of patients is between40
to 80 especially in the area of Thrissur district.
>
Home based care
In this study home based care is a care given to the patients from their own home .It improves the
quality of life of terminally ill persons. The aim of home based care is ultimately to “promote,
restore and maintain a person’s maximum level of comfort, function and health, including care
towards a dignified death.”
>
Hospital based care
Hospital based care is a type of care giving to the patients from the hospital or clinics. The age
group of patients is between40 to 80 especially in the area of Thrissur district.
>
Quality of life
In this research quality of life refers to the subjective experience of palliative care patients in five
dimension mainly symptoms, function, interpersonal, well-being, and transcendence. Both under
the home based palliative care and hospital based palliative care patients.
PILOT STUDY
Then
ircher visited the centers of palliative care to know the feasibility and scope of the
study in terms of availability of respondents, finalizing tools and methods of data collection and
official permission to undertake study.
)
( UNIVERSE OF THE STUDY
Inthis research the universe of the study is the palliative care patients in Thrissur district
UNIT OF THE STUDY
In any research studies unit is very important to clearly define the set of objects technically. The
^ unit can be finite or infinite, homogeneous and heterogeneous in nature. In the current study, all
the terminally ill patients who receive palliative care either at home or at hospital consists the
universe of the study.
SAMPLE SIZE
Sample of the study consist of 80 terminally ill patients who presently receive palliative care
either at hospital or at home. Forty patients were selected from home based palliative care and
forty patients were selected from institutional based palliative care.
SOURCES OF DATA
>
Primary data
The primary data collected from the home based palliative care patients and hospital based
palliative care patients in Thrissur district
>
Secondary data
The secondary data for the study collected from various books, journals, magazines, palliative
care centers, news papers and internet
DESIGN OF THE RESEARCH STUDY
After the research problem having been formulated in clear cut terms, the next step would be
preparing research design. In this, the researcher would have to state the conceptual structure
within which research would be conducted. The research design has to be structured to collect
the relevant evidence with minimal cost effect like - expenditure, effort, time and money. This
can be achieved mainly on the research purpose. Research purpose can be divided into four
categories, according to Kothari, 1990 categorized as exploratory, description, diagnosis and
explanation.
In the present study a descriptive cum explanatory design was adopted. The descriptive design
was adopted to understand the socio-demographic detail of the respondent and the quality of
life experienced by the respondents.
Measurement Tools
Socio-demographic data schedule: The socio-demographic data for the present research is
elicited using a semi-structured, pre-formatted schedule. This is a detailed schedule which was
designed to collect data on the age, sex, education, religion, family income, marital status,
duration of illness and the education of the patients. The purpose of administering this schedule
was to gather as much data as required for statistical, descriptive and analytical purposes. The
main purpose these questions are mainly to know the socio-demographic background of the
patients and to better understand the influence of these socio-demographic variables on the
quality of life experienced by them.
The Missoula-VITAS Quality of Life Index (MVQOLI):The Missoula-VITAS Quality of
Life Index (MVQOLI) is an assessment instrument that gathers patient-reported information
about quality of life during advanced illness. Maintaining optimal quality of life is a core goal
of palliative and hospice care, and information gathered via the MVQOLI assists health care
professionals in identifying and addressing patient concerns that affect quality of life. The
MVQOLI has been used in many different healthcare settings including hospice, hospital, home
health, long-term care (including assisted living), outpatient palliative care, disease
management and pre-hospice programs. The MVQOLI was developed in 1995 by Ira Byock,
MD, Melanie Merriman, PhD, and Barry Kinzbrunner, MD (Chief Medical Officer at VITAS
Healthcare Corporation), and revised in 2OO4.The MVQOLI asks patients about 5 dimensions
or domains of quality of life: symptoms; function; interpersonal; well-being; and
transcendence.
PRE-TEST
Pre-test is the trail administration of a newly developed instrument to identify flaws or assess
time requirements (Pliatet al, 1999). Socio-demographic data schedule and The Missoula-
VITAS Quality of Life Index were administered to four respondents who received palliate care
from hospital and home based care. All items were closely understood by the respondent and
they answered well
DATA COLLECTION
The researcher has collected the data through the questionnaire from palliative care patients in
Kannur district. The researcher collected data from 80 respondents; 40 respondents from the
hospital based palliative care and 40 respondents from the home based palliative care.
EDITING CODIG AND TABULATION
The data processing is an important stage of work between data collection and interpretation.
After collecting the data was edited by the researcher. Then it was classified and gave codes to
each respondent. Researcher tabulated the data by using SPSS. Statistical computation is used
for further interpretation.
ANALYSIS AND INTERPRETATION
The analysis and interpretation are based on the responses given by the 80 respondents.
Processed data is presented in the analysis part with the help of tables and charts.
INC
SION CRITERIA
•
Age group of patients is above 40
•
Patients should live with the family
•
Physically &nd verbally responsive
EXCLUSION CRITE
A
•
Patients with any psychiatric and neurotic disorder
•
Age group of patients should not be below 40
•
Patients should not use any day care facilities
DATA PROCESSING AND STATISTICAL ANALYSIS OF DATA
Test applied for the
study
Descriptive statistics
Frequency, Mean,
Median, Mode, S.D,
Range
Chi-square
Independent sample tTest
Karl
pearson’s
correlation matrix
Purpose of the test
This test was used to find the frequencies of
demographic variable measured at nominal
level
• This test was used to examine the pattern of
central tendencies in individual variables and
continues variables.
• This test also described quality of life of the
patients in home bases palliative care and
___ institution based palliative care.______________
• This test was done to compare the variables
which are categorical in nature.
• To find out the association between the socio
demographic variables and quality of life
experienced by them
• Example: Educational grade achieved and type
of marriage
______
• This test was used to find out statistical
difference between independent groups (two)
mean scores on the quality of life scale.
•
•
•
•
The testxmeasures the degree of association
between two variables. A positive value for the
correlation implies a positive association. A
negative value’.for the correlation implies a
negative or inverse association.
This was used to fmd the relationship between
various continuous variables.
In this study, all the sub-domains of the scales
were used to find out positive and negative
association among the sub-domains.
Limitations
1. Geographically the scope of the study restricts its self to particular area only.
CHAPTERISATION
I.
Introduction
The first chapter of the study includes the introduction palliative care, history, models
of palliative care; home based and institutionalized palliative care and brief summary.
IL
Review of literature
The second chapter deals with the review of literature related to study which was
collected from books, article, magazines and website.
III.
Research methodology
The third chapter deals with research methodology. It contains the Introduction, title of
the study, statement of the problem, objectives of the study, universe, pilot study,
research design, and tools of data collection, sources of data, pretesting, definitions,
data processing and statistical analysis of data and limitations of the study.
IV.
Analysis and interpretation
The fourth chapter consists of data analysis and interpretation
V.
Findings and suggestions and Conclusion
The fifth chapter deals with the major findings of the study, suggestions and conclusion.
Anhexure
Bibliography
App'endix
CHAPTER -IV
ANALYSIS AND INTERPRETATION
ANALYSIS AND INTERPRETATION
The present chapter deals with the analysis and interpretation of the data based on the interview
schedule. The analysis and interpretation is designed along with the direction of the aim and
objectives of the study. The objectives of the study were:
•
To study the socio-demographic details of the patients under palliative care
•
To understand the quality of the life of the patients in home based palliative care.
•
To understand the quality of the life of the patients under hospital based palliative care.
•
To compare the quality of life of the patients under home based palliative care and
hospital based palliative care.
•
To understand the socio-demographic correlates of the quality of life of the patients
under home based palliative care and hospital based palliative care.
•
To achieve the above said objectives in the present study the researcher used the
following tools:
1.
Socio demographic data schedule (prepared by the researcher).
2.
The Missoula-VITAS Quality of Life Index (MVQOLI) (Ira Byock et al, 1995).
Objective 1: To study the socio-demographic details of the patients under palliative care
Table-4.1
Gender of the Patient
Gender of the Patient
Frequency
Percent
Male
44
55.0
Female
36
45.0
Total
80
100.0
Religion of the respondent
Frequency
Percent
Christian
2
2.5
Hindu
62
77.5
Muslim
16
20.0
Total
80
100.0
The table no 1 shows the gender, religion, and marital status of the respondents. There are 44
(55%) male respondent and 36 (45%) female. Majority of the respondents were belonging to the
Hindu religion. Among 80 respondents 62(77.5%) were identified as Hindu and 16(20%)
respondents were identified as Muslims. Only 2 (2.5%) respondents were identified as
Christians.
Figure - 4.1
Religion of the respondent
Religion of the respondents
100
80
60
40
20
0
Christian
Total
Muslim
Hindu
■ Religion of the respondent Frequency ■ Religion of the respondent Percent
Table -4.2
Marital status of respondent
Marital status of respondents
Frequency
Percent
Single
3
3.8
Married Couples
67
83.8
widow/widower
10
12.5
Total
80
100
ZcCy- CPHl- -
Korannsntjala
—ore
Table no 2 shows the marital status of the respondent. The marital status of the palliative care
patients among 80 respondents 67(83.8) were married couples. The respondents leading single
life was 3(3.8%). 10(12.5%) respondents were identified as widow or widower.
Figure -4.2
Marital status of the respondents
Marital status of respondents
Single
Mamed Couples
widow/widower
Total
Table -4.3
The type of disease of the respondent in the palliative care
Type of disease
Frequency
Percent
43
53.8
sugar
19
23.8
Heart disease
18
22.5
Total
80
100.0
Cancer
Cholesterol,
This table no 3 shows the type of the disease of the respondents in palliative care. There
were 43(53.8%) respondents with cancer. Among the respondents 19 (23.8%) were
experiencing high level of sugar and cholesterol and 18 (22.5%) respondents were suffering
from heart disease.
Total
100.0
80
This table no 4 reveals that the respondents relief from the treatment. Among 80 respondents
59(73.8%) were getting relief from the treatment. At the same time 21(26.3%) respondents
were not experiencing relief from the treatment.
Table -4.5
How did the respondent come to know about palliative care?
How did the respondent come to know about palliative care
Frequency
Percent
Volunteers
38
47.5
Hospital
12
15.0
Relatives
8
10.0
Doctor
16
20.0
Others
6
7.5
Total
80
100.0
This table indicates that how respondents came to know about the palliative care. The majority of
the respondents 38 (47.5%) came to know through volunteers; 15 %( 12) of the respondent came
to know about palliative care through hospital. ; 8 (10%) came to know through relatives; 20%
(16) respondents came to know about palliative care through doctor; and 6 (7.5%) respondents
came to know through others.
Figure-4.3
Figure showing the type of disease of the respondents in palliative care
Type of disease
50“
40-
o 30E
a»
□
u-
20“
t|
10“
O'
cancer
I
I
cholostrole.suger
heart disease
Type of disease
Table -4.4
The respondent’s relief from the treatment
The respondent’s relief from the treatment
Frequency
Percent
yes
59
73.8
No
21
26.3
Figure - 4.4
Figure showing how did respondents come to know about palliative care
100 <
j
90 -
How did the
respondent come to
know about palliative
care Frequency
80 -
70 -
60 50 -
■
40 -
How did the
respondent come to
know about palliative
care Percent
30 20 10 -
V-
0 -
T
z
>°° o'
Table -4.6
Age of the patient
Age of the respondents
Frequency
Percent
40-50
7
8.8
51-60
15
18.8
61-70
28
35
71-80
29
36.3
80 above
1
1.3
Total
80
100
Above table reveals that the majority 36.3% (29) of the patients are the age group between 71-
80. Among the 80 respondents 35 % (28) of the respondents were the age group between 6170; 18.8% (15) respondents identified as the age group between 51-60. The age group
between40-50 identified as 7(8.8) and there were only one identified as above the 80.
Figure - 4.5
Age of the respondents
The age group of respondents
100
90
80
70
60
50
40
30
20
10
0
®3
w Is
If i
|i
40-50
51-60
61-70
fa
71-80
80 above
The age group of respondent Frequency
The age group of respondent Percent
Total
Table -4.7
The respondent’s need for the care other than the care provided by the unit
The respondent’s need for the care other than the care provided by
the unit
Frequency
Percent
Yes
22
27.5
No
58
72.5
Total
80s
100
Specifying the care needed by the patients
Frequency
Percent
Counseling
6
7.5
More visits
11
13.8
Speech therapy
2
2.5
No opinion
59
73.8
Financial
2
2.5
80
100
support
Total
This table shows the respondents need for the care other than the care provided by
the palliative care unit.58 (72.5% ) respondents were answered that they are
satisfied with all they receive.22(27.5%) identified that they have desire to get
little more services by the palliative care unit. Among the 22 respondents there
were 6(7.5%) respondents who were in need of counseling; and there were
11(13.8%) respondents who were in need of the frequent visit and care of the
personals in the palliative care; there were 2(2.5%) respondents who were in need
of speech therapy; and there were 2(2.5%) respondents who were in need of
financial support.
Figure-4.6
Figure showing the patients need other than the care provided by palliative care
unit
100 -i
90 80 70 60 ~
50 40 30 20 10 0 -
X
patients need other than
the care provided by the
palliative care unit
patients need other than
the care provided by the
palliative care unit
Frequency
patients need other than
the care provided by the
palliative care unit
Frequency
T
•X /
OZ
z
,O
» patients need other than
the care provided by the
palliative care unit
Percent
Table -4.8
Duration of respondents undergoing palliative care
Duration of respondent undergoing palliative care
Frequency
Percent
23
28.8
6-12 months
6
7.5
12-18 months
28
35
18-24 moths
7
8.8
16
20
80
100
Less than 6
months
24 months and
more
Total
Table number 7 shows the duration of the respondent undergoing the care provided
by the palliative care unit. There were 23(28.8%) respondents who were attending
the treatment in a duration of less than 6 months; there were 6(7.5%) respondents
who were getting the service of palliative care unit in time period of 6-12 months;
there were 28 ( 35%) respondents who were given service in a time period of 18-24
months; there were 7(8.8%) respondents who were given service in a time period of
18-24 months; there were 16(20%) respondents who were given service in a time of
24 months and above.
Figure -4.7
Duration of respondents undergoing palliative care
Duration of respondent undergoing palliative care
HI less than 6 months
@6-12 months
□ 12-18 months
■ 18-24 moths
□24 months and more
Table -4.9
Type of care receiving the patient
Type of care receiving the patient
Frequency
Percent
40
50
care
40
50
Total
80
100
Home based care
Hospital based
Receiving home based care is more effective than receiving
hospital based palliative care
yes
Frequency
Percent
80
100
Table number 8 shows the type of care received by the patients. There were 40(50%)
respondents who were receiving home based palliative care and there were 40(50%)
respondents who were receiving hospital based palliative care; the 80 (100%)
respondents were desired to get or respondents thinking that home based palliative
care will be more effective.
Figure - 4.8
Type of care receiving the patients
Type of care receiving the patient Frequency
Type of care receiving the patient Percent
Home based care
Hospital based care
Total
Table -4.10
The respondent’s satisfaction of services provided by the doctor of palliative care
unit
The respondent’s satisfaction of services provided by the doctor
of palliative care unit
Frequency
Percent
Highly satisfied
29
36.3
Satisfied
46
57.5
Not satisfied
5
6.3
Total
80
100
Table no 9 shows that the satisfaction of the respondents by the services of palliative
care givers mainly by doctor. There were 29(36.3 %) respondents highly satisfied
with the service of doctor in palliative care unit; and 46(57.5 %) respondents were
satisfied; 5 (6.3%) respondents were not satisfied with the care provided by the
doctor in palliative care unit.
Figure - 4.9
The respondent’s satisfaction of services provided by the doctor of palliative care
unit
» The respondent's satisfaction of services provided by the doctor
of palliative care unit Frequency
» The respondent’s satisfaction of services provided by the doctor
100
of palliative care unit Percent
iiim
80
■i;
I
■
57.5
46
363,
29 B
■:
I
iwl
;
I
ft
fell
i
'ey
5
6.3
i
iBf
Highly satisfied
I
Satisfied
Not satisfied
Total
■
|
Table -4.11
The respondent’s satisfaction of services provided by the nurse of palliative care
unit
The respondent’s satisfaction of services provided by the
nurse of palliative care unit
Frequency
Percent
Highly satisfied
31
38.8
Satisfied
49
61.3
Total
80
100
The table no 11 shows the respondent satisfaction in the service provided by the
nurse of palliative care unit. Among the 80 respondents 31 (38.8%) respondents were
highly satisfied with the care provided by the nurse in palliative care unit. Majority
of the respondent 49 (61.3%) were satisfied with the care provided by the nurse.
Table -4.12
The respondent’s satisfaction of services provided by the volunteers of palliative
care unit
The respondent’s satisfaction of services provided by the
volunteers of palliative care unit
Frequency
Percent
satisfied
31
38.8
Satisfied
45
56.3
satisfied
4
5
Total
80
100
Highly
Not
The table no 12 shows the respondent satisfaction in the service provided by the
volunteers of palliative care unit. Among the 80 respondents 31 (38.8%) respondents
is highly satisfied. 45(56.3%) were satisfied with the care and 4 (5%) respondents
were not satisfied with the care of the volunteers in palliative care.
Objective 2: To understand the quality of the life of the patients in home based
palliative care.
Table-4.13
Quality of life of patients receiving home based palliative care
Quality of life of patients receiving home based
palliative care
Std.
N
Std.
Error
Mean
Deviation
Mean
Symptoms
40
15.88
6.8987
1.0908
Function
40
12.463
11.332
1.7918
Interpersonal
40
18.288
9.4258
1.4903
Well-being
40
7.475
11.008
1.7405
Transcendent
40
12.175
6.7154
1.0618
Total
40
21.543
2.4668
0.39
Table no 13 shows the quality of life among the home based palliative care patients
under 5 dimensions namely symptoms, functions, interpersonal, well-being and
transcendent. The possible range of total score is 0 to 30 .the mean total score of
quality of life is 21.5425 (SD=2.67) which means that the patients experienced fairly
high level of quality of life. The possible range of sub scales are -30 to +30, there the
mean score in symptom was 15.88 (SD=6.89); which means the Experience of the
physical discomfort associated with progressive illness; perceived level of physical
distress of patients in home based palliative care is fairly well. The mean score of
function is 12.46 (SD=11.33); which means thefunctions and activities of daily
living; experienced in relation to expectations are fairly well. The mean score of
interpersonal dimension was 18.28 (SD=9.45); which means that they were able to
invest more time in their personal relationships and they experience better quality of
life. The mean score of well-being was 7.47 (SD=11.007); which means Self
assessment of an internal condition; subjective sense of wellness of home based care
patients was less comparing to other dimension. The mean score of transcendent
was 12.17 (SD=6.71).which means theexperienced degree of connection with an
enduring construct; degree of experienced meaning or purpose in life is fairly well.
Objective 3: To understand the quality of the life of the patients under hospital
based palliative care.
Table no-4.14
Quality of life of patients receiving hospital based palliative care
Quality of life of patients receiving hospital based
palliative
care
Std.
N
Std. Error Mean
Mean
Deviation
Symptoms
40
1.525
14.80859
2.3414
Function
40
-5.8
23.41674
3.7025
Interpersonal
40
4.15
18.40645
2.9103
Well-being
40
-11.5
12.44938
1.9684
Transcendent
40
0.03
10.89637
1.7229
Total
40
14.263
5.00581
0.7915
Table no 14 shows the quality of life among hospital based palliative care patients
under 5 dimensions namely symptoms, functions, interpersonal, well-being and
transcendent. The possible range of total score is 0 to 30. The mean total score of
quality of life is 14.2625 (SD 5.00581). This means that the patients experienced low
level of quality of life. The possible range of sub scales are -30 to +30, there the
mean score in symptom was 1.5250 (SD=14.808); which means the Experience of
the physical discomfort associated with progressive illness; perceived level of
physical distress of patients in hospital based palliative care is very low. The mean
score of function is -5.80(SD=23.416); which means thefunctions and activities of
daily living; experienced in relation to expectations are not functioning well. The
mean score of interpersonal dimension was 4.15 (SD= 18.406); which means that
they were not able to invest more time in their personal relationships and they
experience lower quality of life. The mean score of well-being was
11.500(80=12.449); which means Self-assessment of an internal condition;
subjective sense of wellness of hospital based care patients was very less comparing
to other dimensions. The mean score of transcendent was .03 (SD=10.89).which
means theexperienced degree of connection with an enduring construct; degree of
experienced meaning or purpose in life is very
Objective 4: To compare the quality of life of the patients under home based
palliative care and hospital based palliative care.
Table-4.15
Quality of life of patients receiving home based and hospital based palliative care
Quality of life of patients receiving home based and hospital based pa liative care
SYMPTOMS
FUNCTION
INTERPERSONAL
WELL-BEING
TRANCENDENT
TOTAL
Type of care
receiving the
patient
Home based
care
Hospital
based care
Home based
care
Hospital
based care
Home based
care
Hospital
based care
Home based
care
Hospital
based care
Home based
care
Hospital
based care
Home based
care
Hospital
based care
Mean
SD
15.88
6.89865
40
1.525
14.8086
40
12.4625
11.332
40
-5.8
23.4167
N
40
18.2875
9.42575
40
4.15
18.4065
40
7.475
11.0075
40
-11.5
12.4494
40
12.175
6.71541
40
0.03
10.8964
40
21.5425
2.46682
40
14.2625
5.00581
T
5.557
Df
78
Sig.
(2tailed)
0
4.44
78
0
4.324
78
0
7.222
78
0
6.001
78
0
8.25
78
0
The above table shows the comparison of the quality of the patients from the home based
palliative care and the hospital based palliative care. The comparison in the symptom dimension
of the quality of life scale shows that the patients from the home based palliative care experience
better satisfaction in the symptom dimension (M= 15.88; SD=6.898) than the patients from the
hospital based palliative care (M= 1.525; SD= 14.8086). The independent sample t-test shows
that these difference were significant (t= 5.557; DF= 78; p<.0001). The comparison in the
function dimension the quality of life scale shows that the patients from home based palliative
care experience better satisfaction in the function dimension(M= 12.462; SD= 11.33 ) than the
patients from the hospital based palliative care (M= - 5.8;SD=23.416). The independent sample
t-test shows that these difference were significant (t= 4.44o; DF= 78; P<.001). In the
interpersonal dimension the quality of life scale shows that the patients from home based
palliative care experience better satisfaction (M= 18.287; SD= 9.425) than the patients from
hospital based palliative care (M= 4.15; SD= 18.40). The independent sample t-test shows that
these difference were significant (t= 4.324; DF= 78; p<.0001). In the well-being dimension of
the quality of life scale shows that the patients from the home based palliative care experience
better satisfaction (M= 7.475; SD=11.007) than the patients from the hospital based palliative
care (M= -11.5; SD= 12.449). The independent sample t-test shows that these difference were
significant (t= 7.222; DF= 78; p<.0001). In the transcendent dimension of the quality of life scale
shows that the patients from the home based palliative care experience better satisfaction (M=
12.175; SD=6.715) than the patients from the hospital based palliative care (M= -0.03; SD=
10.896). The independent sample t-test shows that these difference were significant (t= 6.001;
DF= 78; p<.0001).The overall score of the life satisfaction scale shows that the patients from
home based palliative care experienced better quality of life (M=21.54; SD=2.46) than the
patient from hospital based palliative care (M= 14.26; SD=5.005). The independent sample t-test
shows that these difference were significant (t= 8.250; DF= 78; p<.0001).
Objective: 5
To understand the socio-demographic correlates of the quality of life of the patients under
home based palliative care and hospital based palliative care.
Table-4.16
Correlation matrix of quality of life and duration of palliative care and duration
of illness
Correlations
I
1
Duration
of
disease
_____ 2_
Duratio
n
respond
ent
undergo
ing
palliativ
e care
3
4
5
Sympto
ms
Function
Interpe
rsonal
1.
6
Well
being
Transc
endent
Total
Duratio
n
of
disease
2^
Mi
Duratio
n
undergo
ing
palliati v
2 e care
.372**
Sympto
ms
-.306**
Functio
n
-.328**
-.419**
.534**
1
Interper
sonal
-.343**
-.429**
.503
.341**
3
4
5
-.485**
1
■
1
3?'
Well
being
-.354**
-.457**
.576**
.494**
.490”
1
- Transce
7 ndent
-.221*
-.345**
.500**
.364**
.467
.541
Total
-.412**
6
I
■^2,^J;
... J26‘'
i__
-.547**
.784**
.631**
.790**
.796**
**. Correlation is significant at the 0.01 level (2-tailed).
*. Correlation is significant at the 0.05 level (2-tailed).
1
The above table shows that there is a negative correlation between the duration
of illness and quality of life in symptom dimension which means that the
duration of illness increases the quality of life in symptom dimension(r = -.306;
p<001). Duration of the palliative care and quality of life in symptom
dimension shows the significant correlation (r = -.485; p< 001). Correlation
between the duration of illness and quality of life in function dimension (r = -
.328; p<.001) shows the negative correlation. The duration of illness increases
the quality of life in interpersonal dimension (r =-.343; p<001) Duration of the
palliative care and quality of life in interpersonal dimension shows the
significant correlation^ = -.429; p< 001). It is interesting to note the significant
positive correlation between the function dimension and symptom dimension
(r=.534; p<.001). A significant inverse correlation between the wellbeing
dimension and duration of palliative care (r = -.457; p<001) the correlation is
significant.
Table-4.17
Independent sample t-Testcomparing the difference between female and male
respondent receiving palliative care
Group
Statistics
Gender
Sig.
Std.
of the
Symptoms
Function
(2-
Patient
N
Mean
Deviation
t
df
tailed)
Male
44
8.6591
14.50893
-.031
78
.975
Female
36
8.7556
12.51033
Male
44
.3295
24.22831
-1.461
78
’.148
Interpersonal
Well-being
Transcendent
Total
Female
36
7.0000
14.08292
Male
44
10.3295
16.19393
Female
36
12.3056
16.31970
Male
44
-4.9545
14.61634
Female
36
1.5833
15.06012
Male
44
4.5455
11.13961
Female
36
8.0056
10.37351
Male
44
17.2000
5.34257
Female
36
18.7611
5.34243
-.541
78
.590
-1.963
78
.053
-1.425
78
.158
-1.300
78
.197
The above table shows that the different level of quality of life experienced by male
and female respondent in palliative care. In symptom dimension there is only slight
level of difference between male (M =8.6591; SD =14.50) and female (M =8.755;
SD =12.510). Independent t test (t= -.031; df = 78) shows that the difference is not
significant (NF=.975). In function dimension there is only slight level of difference
between male (M =.329; SD =24.22) and female (M =7.00; SD =14.08). Independent
t test (t= -1.46; df = 78) shows that the difference is not significant (NF=.148).In
well-being dimension there is difference between the quality of life of male (M= 4.954; SD
14.61) and female (M =1.58; SD =15.06). The independent test (t= -
1.96; df
78) shows that the difference is significant (053). In transcendent
dimension there is only slight level of difference between male (M = 4.54; SD
=11.13) and female (M =8.005; SD =10.37). Independent t test (t= -1.425; df = 78)
shows that the difference is not significant (NF=. 158).overall expect well-being
dimension is not significant. This shows that there is no difference between the
quality of life experienced between male and female respondents.
Descriptives
cancer
Cholesterol,
sugar
Heart
disease
Total
Cancer
FUNCTION
Cholesterol
,sugar
Heart
disease
Total
INTERPERSONAL Cancer
Cholesterol,
sugar
Heart
disease
Total
WELL-BEING
Cancer
Cholesterol,
sugar
Heart
disease
Total
TRANCENDENT
Cancer
Cholesterol,
sugar
Heart
disease
Total
TOTAL
Cancer
Cholesterol
,sugar
Heart
disease
Total
SYMPTOMS
Std.
Mean Deviation
8.2488 13.79435
N
43
19
10.7632
8.01798
18
7.6111
17.60645
80
43
19
8.7025
13.56179
1.7326
11.3947
13.83893
10.80455
18
-1.3611
35.29489
80
43
20.45804
19
3.3313
9.2442
15.7105
18
11.1944
17.58353
80
11.2188
43
19
-4.4186
5.8421
16.17758
14.29199
13.41646
18
-4.5556
16.47537
80
-2.0125
43
19
3.7907
11.8158
15.08247
11.46747
10.06812
18
5.5944
8.17791
80
43
19
6.1025
16.8174
20.5526
10.87286
18
17.6972
6.08925
80
17.9025
5.36581
16.87820
12.70096
5.17987
4.29785
df
F
Sig.
2
.296
.744
2
2.141
.125
2
1.054
.353
2
3.602
.032
2
3.878
.025
2
3.405
.038
CHAPTER V
FINDINGS, SUGGESTIONS,
AND CONCLUSION
FINDINGS
> The important findings of this study entitled evaluating the effectiveness of hospital
based palliative care and home based palliative care to improve the quality of life of
the terminally ill persons are following.
> 77.5% of the palliative care patients were identified as Hindu
> Among the 80 respondents 43(53.8%) respondents were suffering from cancer.
> The majority of the patients under the palliative care 59(73.8%) are getting relief from
the treatment.
> The majority of the respondents 38 (47.5%) came to know about palliative care
through volunteers; 15 %( 12) of the respondent came to know about palliative care
through hospital. ; 8 (10%) came to know through relatives; 20% (16) respondents
came to know about palliative care through doctor; and 6 (7.5%) respondents came to
know through others.
> In this study the majority of the respondents 38 (47.5%) came to know about palliative
care through volunteers; 15 %( 12) of the respondent came to know about palliative
care through hospital. ; 8 (10%) came to know through relatives; 20% (16)
respondents came to know about palliative care through doctor; and 6 (7.5%)
respondents came to know through others.
> The age groups of patients undergoing palliative care in this study discover that 36.3%
(29) of the patients are the age between 71-80. Among the 80 respondents 35 % (28)
of the respondents are the age group flanked by 61-70; 18.8% (15) respondents
identified as the age group flanked by 51 -60. The age group between40-50 identified
as 7% (8.8) and there were only one identified as above the 80.
> 72.5% of the respondents are satisfied with the care provided by the palliative care
unit. 22(27.5%) identified that they have desire to get little more services by the
palliative care unit. Among the 22 respondents 6(7.5%) respondents who are in need
of counseling; and 11(13.8%) respondents are in need of the frequent visit and care of
the personnel’s in the palliative care; there are 2(2.5%) respondents who are in need of
speech therapy; and there are 2(2.5%) respondents who are in need of financial
support.
> Among the 80 respondents 31 (38.8%) respondents are highly satisfied with the care
provided by the nurse in palliative care unit. Majority of the respondent 49 (61.3%)
are satisfied with the care provided by the nurse.
> Among the 80 respondents 31 (38.8%) respondents highly satisfied with the care
provided by the volunteers in palliative care; 45(56.3%) are satisfied with the care and
4 (5%) respondents were not satisfied with the care of the volunteers in palliative care.
>
The patients from the home based palliative care experience better satisfaction in the
symptom dimension (M= 15.88; SD=6.898) than the patients from the hospital based
palliative care (M= 1.525; SD= 14.8086).
> The patients from home based palliative care experience better satisfaction in the
function dimension (M= 12.462; SD= 11.33) than the patients from the hospital based
palliative care (M= - 5.8; SD=23.416).
> In the interpersonal dimension the patients from home based palliative care experience
better satisfaction (M= 18.287; SD= 9.425) than the patients from hospital based
palliative care (M= 4.15; SD= 18.40).
>
In the well-being dimension the patients from the home based palliative care
experience better satisfaction (M= 7.475; SD=11.007) than the patients from the
hospital based palliative care.
> In the transcendent dimension the patients from the home based palliative care
experience better satisfaction (M= 12.175; SD=6.715) than the patients from the
hospital based palliative care (M= -0.03; SD= 10.896).
BIBLIOGRAPHY
BIBLIOGRAPHY
>
Anil Paleri, M. N. (2005). The evolution of palliative care
programmes in North Kerala. Indian journal ofpalliative care . 15.
>
Clark, D. (2003). Editorial. Indian journal ofpalliative care , 40-41.
>
Divya Khosala, F. D. (n.d.). review article, palliative care in India:
current progress andfuture needs , 149.
>
Dongre AR, D. R. (2012). Social determinants of quality of elderly
life in a rural setting of India. Indian journal ofpalliative care ,181.
>
E, M., L, S., & M, W. (2008). Hospice and palliative care
development in India: a multimethod review of services and experiences.
Journal ofPain Symptom Manage. , 583-9.
>
Jayakrishnan Thayyil, J. M. (2012). Assessment of status of patients
recieving palliative home care and serices providede in rural area
,Kerala, India. Indian journal ofpalliative care , 214.
>
Kumar, S. (2013, 2 12). The Paliative care Indian Scene. Retrieved
http://mecc.cancer.gov/pallative_care_workshop/kumar-
from
indian_scene.pdf.
>
Moetlo GJ, P. S. (2011). An evolution of the implimentation of
integrated community home basd care service in Vhembe district. Indian
journal ofpalliative care 137.
>
Mohanthi, B. K. (2013). Research focus in Paliative care. Indian
Journel ofpaliative care .
■»
Mohantti KB. (2011). research focus in palliative care. Indian journal
>
ofpalliative care . 58,59.
Seamark, D. (2000). journal of the royal society medicine, indian
>
journal ofpalliative care . 293.
Internet Resources
> http://www.ccim.org/content/80/e-Suppl l/e-S30.abstract
> http://www.ncbi.nlm.nih.gov/pubmed/14622451?log$=activity
>
>
>
http://www.ncbi. nlm.nih.gov/pubmed/20642361?log$=activity
http://www.ncbi.nlm.nih.gov/pubmed/19615625
http://healthcare.financialexpress.com/200909/marl<etl3.shtml
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140078/
> http://palliumindia.org/cms/wp-content/uploads/2010/01/Palliative-Care-Policy>
>
Kerala.pdf
http://www.instituteofpalliativemedicine.org/download.php
http://books.google.co.in/books?id=YmMwVnGTNiYC&printsec=frontcover&dq=palliati
ve+care&hl=en&sa=X&ei=aSXMUbXAL4qHrgefroD4CA&ved=0CDIQ6AEwAA#v=onepage
&q=paHiative%20care&f=false
> http://www.instituteofpaHiativemedicine.org/index.php
APPENDIX
SOCIODEMOGRAPHI
C QUESTIONAIR
SD1
Name of the patient
SD2
Name of panchayath
SD3
Gender of the patient
l.Male
2. Female
SD4
Age of the respondent
1.30-40
2.41-50
3.51-60
4.61-70
5.Above 70
SD5
Religion of the
1. Christian
respondent
2. Hindu
3.Muslim
SD6
Marital status
1 .single
2. Married
3
Divorced/sepa
rated
4.widow/wido
wer
SD7
Type of disease
SD8
How long have you been
1 .Less than 6
■»
suffering from this
months
disease?
2.6-12
months
3. 12-18
months
4.18-24
months
5.24 Moths
and more
SD9
SD10
SDH
Do you get pain relief
l.Yes
from treatment
2.No
How did you come to
1.
know about palliative
Volunteers
care?
2.
Hospital
3.
Relatives
4.
Doctor
5.
Others
Please specify the type
1 .Home based
of care you get:
care
2.hospital
based care
SD12
Are you satisfied with
1.
the present medical
satisfied
treatment provided by
2.
pain and palliative care
Satisfied
Highly
9
unit?
3.
Not
satisfied
4.
No
opinion
SD13
Highly
Are you satisfied with
1.
the present medicines of
satisfied
pain and palliative care
2.
Satisfied
unit?
3.
Not
satisfied
4
No
opinion
1.
SD14
Highly
Are you satisfied with
satisfied
the overall services of
2.
Satisfied
the Unit?
3.
Not
satisfied
4.
. No
opinion
SD15
Do you need any care
l.Yes
other than the care
2. No
provided by the unit?
S
If yes, please specify the
D
care needed by you
1
6
S
Do you think that pain
1.
Absolute
D
and palliative care is
ly Essential
1
essential for patients
2.
Essential
7
suffering from terminal
3.
Some
illness or old age
what essential
problems?
4.
Not
essential
5.
No
opinion
SD18
How long have you been
1. Less than 6
undergoing palliative
months
treatment?
2. 6-12
months
3. 12-18
months
4.18-24
months
5. 24 Moths
and more
SD19
Highly
Are you satisfied with
1.
the present services of
satisfied
the doctor of pain and
2.
palliative care unit?
Satisfied
3.
Not
satisfied
4.
No
opinion
SD20
Highly
Are you satisfied with
1.
the present services of
satisfied
the nurse of pain and
2.
Satisfied
palliative care unit?
3.
Not
satisfied
4.
No
opinion
SD21
Are you satisfied with
1.
the present services of
satisfied
the volunteers of pain
2.
Satisfied
and palliative care unit?
3.
Not
Highly
satisfied
4.
No
opinion
SD22
Do you think that it is
T
Yes
more effective that
2.
No
receiving home based
care than hospital based
care
Missoula-VITAS Quality of Life Index
SYMPTOM
QL1
My symptoms are
adequately controlled.
1.
Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
QL2
I feel sick all the time
QL3
I accept my symptoms
as a fact of life.
QL4
I am satisfied with
current control of my
symptom
QL5
Physical discomfort
overshadows any
opportunity for
enjoyment
1. Agree
Strongly
2.
Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2.
Agree
Neutral
3.
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2.
Agree
3.
Neutral
4. Disagr
ee
5. Disagr
ee Strongly
9
FUNCTION
QL6
I am dependent on
others for personal
care
QL7
I am no longer able to
do many of the things I
like to do
QL8
I am satisfied with my
ability to take care of
my basic needs
QL9
I accept the fact that I
can not do many of the
things that I used to
do.
QL10
My contentment with
life depends upon
being active and being
1. Agree
Strongly
2.
Agree
3.
Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2.
Agree
3. Neutral
4. Disagr
ee
Disagr
5.
ee Strongly
1. Agree
Strongly
2.
Agree
3. Neutral
4.
Disagr
ee
5.
Disagr
ee Strongly
1. Agree
Strongly
2.
Agree
3. Neutral
4.
Disagr
ee
Disagr
5.
ee Strongly
1. Agree
Strongly
2. Agree
9
independent in
personal care.
my
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
INTERPERSONAL
QL11
I have recently been
able to say important
things to the people
close
to me.
QL12
I feel closer to others
in my life now
than I did before my
illness
QL13
In general, these days I
am satisfied with
relationships with
family and friends.
QL14
At present, I spend as
much time as I want to
with family and
friends.
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5.
Disagr
ee Strongly
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
Disagr
5.
ee Strongly
1. Agree
Strongly
Agree
2.
3. Neutral
4.
Disagr
ee
5.
-»
QL15
It is important to me to
have close personal
relationships
Disagree
Strongly
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
WELL-BEING
QL16
My affairs are not in
order; I am worried
that many things are
unresolved
QL17
If I were to die
suddenly
today,
I
would feel prepared to
leave this life.
QL18
I am more satisfied
with myself as a
person now than I was
before my illness.
QL19
The longer I am ill, the
more 1 worry about
things "getting out
1. Agree
Strongly
2.
Agree
3.
Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2.
Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
Disagr
5.
ee Strongly
1. Agree
Strongly
2. Agree
9
QL20
of control".
3. Neutral
4.
Disagr
ee
5. Disagr
ee Strongly
It is important to me to
be at peace with
myself.
1.
Agree
Strongly
2.
Agree
3. Neutral
4.
Disagr
ee
5.
Disagree
Strongly
6.
TRANSCENDENT
QL21
feel more disconnected
from all things now
than I did before my
illness.
QL22
I have a better sense of
meaning in my life
now than I have had
in the past
QL23
I am comfortable with
the thought of my own
1. Agree
Strongly
2.
Agree
3.
Neutral
4.
Disagr
ee
Disagr
5.
ee Strongly
1.
Agree
Strongly
2.
Agree
3.
Neutral
4.
Disagr
ee
Disagr
5.
ee Strongly
1.
Agree
Strongly
'J
death
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
QL24
Life has lost all value
for me; every day is a
burden
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagr
ee Strongly
QL25
It is important to me to
feel that my life has
meaning
1. Agree
Strongly
2. Agree
3. Neutral
4. Disagr
ee
5. Disagree
Strongly
- Media
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