The worldwide demographics are shifting. People are living longer in most of the world and there is an increasing incidence of chronic illness associated with aging .Chronic illness has a profound impact on one’s life and creates a lot of grief in response to the losses it imposes on the lives. There’s a large variety of potential life interruptions and psychological changes one will go through when dealing with illness. Chronic kidney disease(CKD ) is more common with increasing age .There is no cure for chronic renal failure then lead to end stage renal disease (ESRD). ESRD is a chronic, irreversible disease of the kidneys and it is mostly caused by vascular disease and diabetes. The cause of ESRD is diabetes (30%) followed by renal vascular disease, including hypertension (20%).( David T. Gilbertson and et al ,2005). The causes of these lead to pathologic condition and destroy the renal blood vessels and kidney.When function is not able to work,thus the next step lead to accumulation of toxins in the body. Most chronic illness in Thai aging compose of 31.7% hypertension,13.3 % Diabetes mellitus,7.0 % Heart disease(Pisit Piriyapun ,2009).These groups at risk for developing renal impairment include individuals with diabetes in elderly people. Despite ongoing technological advances, patients with end-stage renal disease have a mortality rate of approximately 23% per year, and comorbid cardiovascular, cerebrovascular, and peripheral vascular disorders often make life on dialysis an ordeal.(David M. Poppel and et al ,2003 ).
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The incidence of ESRD is increasing globally and a worldwide public health crisis. The size of the prevalent ESRD population in the United States increased dramatically during the 1990s, from 196,000 in 1991 to 382,000 in 2000. Incidence also increased considerably during the same period, from 53,000 to 93,000 per year. Moreover, incidence and prevalence counts are expected to increase by 44 and 85%, respectively, from 2000 to 2015 .In the same way, the prevalence of diabetes mellitus is increasing in those on dialysis; in the United States, diabetes mellitus is present in over 40% of ESRD patients. More than 20% of dialysis patients die per year in the United States, of whom 20% die due to discontinuation of dialysis. ( David T. Gilbertson and et al ,2005). In U.K. Renal Registry data show that the median age of patients starting renal replacement therapy in 2004 is 65.1 years; this has increased by 1.5 years since 1998. Furthermore, the percentage of incident patients aged over 75 has risen from 18% to 23% over the same time period. Over the past decade, the number of older Canadians (aged ≥ 65 years) with ESRD has more than doubled. (Gilbertson and et al ,2005).When looking in Thai society increasing the number of elderly people, in 2009 about 11.6 % and average 7 million elderly people and expect that in 10 years female elderly have average expectancy life 80 years and male 74 years.(Institute for population Mahidol university,2009). Public health ministry,2010 report about the number of new case of chronic kidney disease 8,000 cases and in this number less than the real cases about 3 times and the cost of treatment showed in figure 1 :
Annual Prevalence of ESRD Report 10 Yr Trend 1997-2006 in Thailand
Figure case per Million From Thanom supaporn and et al , 2006
End stage renal disease is often burdensome for patients and their families and increasingly, from the problems of ESRD patients met with uncertainty in each situation for coping with disease. Mishel M H. defined uncertainty as “the inability to determine the meaning of illness-related events”. The uncertainty theory was developed to explain how patients cognitively process illness-related stimuli and construct meaning for the illness event. The theory is organized around three major themes: the antecedents of uncertainty, the process of uncertainty appraisal and coping with uncertainty. The three major antecedents of uncertainty include stimuli frame, structure providers, and cognitive capacities. Components of the stimuli frame include (a) symptom pattern, (b) event familiarity, and (c) event congruence, which are inversely related to uncertainty and provide different types of information about the illness. The symptom pattern information relates to physical sensations experienced; event familiarity is concerned with the actual health care environment; and event congruence is affected by the predictability and stability of the stimuli. Health professionals, family familiar with ESRD, and educators serve as information sources that can directly and indirectly affect knowledge about the stimuli frame components. Social support can directly and indirectly influence ambiguity, complexity, and unpredictability factors related to uncertainty in illness. ESRD reduces quality of life and life span, and places a heavy burden on the life of its victim and his or her family.
Palliative care (WHO,2002) is an approach that improves the quality of life of patients and their families facing the problems 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, psychosocial and spiritual. These needs are:
Physical – managing symptoms such as pain, sickness, tiredness or loss of appetite;
Psychological – giving emotional support to the resident and those who care about them, giving time to listen to them and understand their concerns
Social – giving support and advice on practical matters such as getting their affairs in order
Spiritual – a need to explore thoughts about the meaning of life, or concerns about what happens after death. All people are likely to have spiritual needs and some may also have practical things they need to do because of their religious beliefs .
Three measures are required as a foundation for developing palliative care with a public health approach (WHO, 1996): a government policy to ensure the integration of palliative care services into the structure ,and financing of the national health-care system, an educational policy to provide support for the training of health-care professionals, volunteers and the public; a drug policy to ensure the availability of essential drugs for the management of pain and other symptoms and psychological distress. A public health approach to palliative care is required in all countries in order to address the needs of all patients and their families, ensuring universal access to the necessary services at all levels of care within the health system. The roles of families in home-based palliative care, the focus of home-based palliative care by families has changed from a simple caring role to more complex care, often involving advanced skills such as drug administration and symptom management. Palliative and EOL care for ESRD is now developing in some parts of the world in response to the recognized needs.
In early 2005, the National Palliative Care Network was established Palliative and end of life care in Thailand and progress in many hospital both rural and urban but not link to community including home based palliative care and involve governmental, non-governmental and faith-based organizations. Palliative and end of life care are a positive part of health and social care, which try to make death as good as possible. This is important for the person themselves, the loved ones they leave behind and those who provide care at this important stage.The basic belief of Thai people is that they want to die at home (74% of survey study ) with their close relatives until the last breath. From characteristic of Thai families were extended families and the member of families will be encounter together in coping with some problems. Some hospitals established palliative care working groups and are in the process of developing palliative and end of life care programs for their patients. However, palliative and end of life care was not designated as a core service such as Saint Louis hospital.Faith-based organizations and non-government organizations also attend to play key roles in the development of end of life care.
Saint Louis Hospital has palliative care by using palliative care guideline from the committee and the guideline start from admission until the life threatening to death but the model of EOL care is not clear in service especially in ESRD. Even though the hospital has policy to promote EOL care due to religious mission but the nursing care in this aspect still shortage. Most Palliative care model at Saint Louis Hospital is objective to develop quality of nursing service by follow the step of Plan Do Check Action and set the procedure ,coordinate in multidisciplinary team ,set End of Life Care Team in one ward of cancer and try to integrate religious practice in nursing care for EOL stage will be prepared flower, candle ,joss-stick or incense and music record in tape or CD for supportive spiritual and soul of patient depend on respected religions of patients until discharge from the hospital or die in the hospital. Many patients surrounding in this area use service in this hospital and most of patients are middle range income to rich. The characteristics of these group are city society. The way of life depends on each own family rarely to use health service network of community in their environment because of time and daily activities in working .Some relative have some networks in the exercise group for relaxation. For Saint Louis Hospital ,the former year ,there are more 120 cases of ESRD patients in hemodialysis ward until extend service from one ward to the new ward for dialysis but at the present, there are 78 cases due to policy of National health Security Office ( NHSO,สปสช) that support some cost of hemodialysis so that some patients move to other hospitals for receiving support budget from that policy. Most of patients live in the place not far from hospital .To serve care from hospital to home ,there is health promotion department to follow up the specific case at home. The capacity of this department cannot serve home based palliative care and the teamwork have intention to care these patients. The role of the public health nurses should have enable patients to stay at home as long as possible. Nevertheless, the care of end stage renal disease especially in terminally ill people in their own home has received little attention. Living with end stage renal disease is not easy. So the need for palliative care for patients with end-stage renal disease should be increasingly recognized .The model in palliative care at Saint Louis Hospital shows in the pathway below and shows about the next step for doing in this study .
Patients and families in chronic illness and suffering from disease
Refer to other places for continue treatment
Death : relative pick up to continue process in religious practice
Pathway of palliative care at Saint Louis Hospital :Religious practice from respected
Patient care in the ward
Nursing team in palliative care;
Pain management,
Sedative
Catholic priest join to emotional support
Palliative care team in ward
Set Goal of care and palliative care
Select and assessment patients to palliative care by using Interdisciplinary assessment
Other disciplines in health team
Discharge from the hospital to home
Extend service to home based palliative care in ESRD
Home based care
PCU in communities
The preliminary study in the happiness score of ESRD patients was 4.5 in 10 and found about the antecedents of uncertainty in ESRD patients follow these :
Stimuli frame:
( A) In progressive symptom, some ESRD patients encounter with many problems about health almost half of all people with end stage renal disease have multiple conditions such as fatigue or tiredness ,pruritus ,constipation ,anorexia ,pain ,sleep disturbance ,anxiety or depression .The data showed about pain and uncomfortable from symptoms of disease such as 76.7 % from edema, 10% from Dyspnea, 60% from pale ,10% from itching, 13.3% from chest discomfort,12.5% from muscle cramp. Most of ESRD patients had 90% in hypertension ,50 % in diabetes mellitus ,65% had hypertension and diabetes mellitus .When looking in the skin of these patients found about 80% had dry skin and 73.7 % had problem in blood circulation and lead to cause of gangrene. The duration of treatment for dialysis of most patients more 3 years up .From asking the patients ,about suffering from pain many patients suffer from pain in the bone resulting bone problem from kidney function ,the one suffer from amputate pennis after problem in blood circulation and the gangrene occurred until amputate it.
(B) event familiarity ;In this mean to the degree of situation is habitual, repetitive in the ESRD .It is difficult thing in the life to adjust the life coping with this disease ,sometime hopeless and when talking in the life of this time she cried and looked so sad with life encounter with this disease. Someone mentioned about it was a difficult thing to make a familiarity with disease and not only suffering from disease but also from couple and economic ,and some patients retired from the job ,it looked so scare in the life until he tried to adjust life and learned about the new ways in this time until received hemodialysis treatment the life is better at this stage the life familiar with this disease but he or she worried about someday in the future is coming how can he or she do? Relative said about it will be good if some organization will be interested in caring in EOL .
(C) event congruence;In this mean to the consistency between the expected and the experienced illness related events with ESRD. In the life nothing can compare with this disease.There were many unexpected things occur in the life and relative . Impact on families caring for ESRD in EOL and plan to die at home was difficult in some aspects of caring such as how do we care patients at home for relative and the families didn’t know how do they do for this situation . One thing occur in relative if there are many people in the families who is the decision maker for patients and what is the appropriate way in this situation ? For many families, the diagnosis of a life-threatening illness of a family member is their first major confrontation with death and after that families must cope with many problems. For family palliative caregivers, the physical, emotional, financial and social impact of providing care for a dying relative may be accentuated by social burdens such as restrictions on personal time, disturbance of routines and diminished leisure time. So if it has something or service in this aspect seem to be good. There is potential for conflict and role of the caregiver attempts to manage multiple responsibilities and forgoes his or her own needs in favor of those of the patient. Over half of the relatives thought about there was not enough emotional support for patients especially in community does not found the existing palliative care network or resource to service for end of life care.
Cognitive capacities: complex self-directed learning mental representations
For patients, many patients who treat with hemodialysis met with the well being after treatment ,they can eat depend on wanted things and they learn after treatment they will be better many patients practice like these .When the time past ,they learn about themselves that they feel more tired and unhappy in the life with hemodialysis .One patient said about he know about the time of life will be coming near death because he feel bad and sometime he didn’t want to go dialysis and request to die at home . This is the situation which nurses met and the nurses must learn in the process of dying and care of them for EOL.
Family perspective found about in caring ESRD patients have multi skills and they must self-directed learning for solving many problems such as the problems of caring in this stage , cost in treatment ,cost of transfer patients from home to hemodialysis ward, retirement from the job to care patients ,unhappy to stay in hospital for dialysis with patients.Families encounter with many problems and they are complex for coping both in physical and mind .For many families, the diagnosis of a life-threatening illness of a family member is their first major confrontation with death and confuse to manage this situation.
Structure providers :
Health care provider found about this is the new service in EOL for community care and there is not a specific model of care for community. Moreover material support in community is not enough. Sometime teamwork in community is not effective and lack of capacity to care this group. In asking about good death: Observations of patients, families found about the problems of decision making, preparation for death. In the meaning of good death is including about free from avoidable distress and suffering for patients, families, caregivers. Family encompasses more than biological relatives or people related by marriage, and can include those identified by patients as key people in their lives. When asking about the needs of elderly people in the place of death found 74% prefer to die at home , 26% prefer to die at hospital because they want to die near doctor or nurses and high technology to help them in critical crisis moreover in asking some patients want to die in hospital it is not the reasons from near expert team to help them but it is the belief from people should not die in the home it will be the bad things to allow the soul of someone walking in the home , these data congruence with the study of Silapasuwan Pimpun,1990 in the percentage of people want to die at home. When focusing in Care within the home usually relies primarily on a family member or friend. Indeed, without the support of caregivers, home palliative care would be impossible for many people.
The multidisciplinary nature of palliative care provision may encourage ESRD patients to play an active role in self-management in order to optimize energy and function. In addition, the psychosocial support and the health care professionals’ care and attention may promote confidence to over-come the disproportionate fear dyspnea on exertion brings may help to engage in routine daily activities. It will also provide unmet needs of the patients psychological, spiritual, and psychosocial needs in the advance stage of the disease in order to improve patients’ quality of life. In addition, the spouse and/or carers are more likely to suffer from anxiety and depressive symptoms providing continuous care during the advance stage of the disease and end of life care without having any periods. Therefore providing the community support needed for renal patients including existing resources, needed resources and possible strategies for acquiring the needed resources from both governmental and nongovernmental sources. Community teams should be able to provide support to patients in their own homes.
However there are several challenges to the development home based palliative care of ESRD in the end of life. End of life care services in Thailand were mainly delivered in hospital settings, while the continuity of care from hospital to home is limited. Improvement of community and home-based palliative care programs is needed to increase the coverage of palliative and end of life care services. Physicians, nurses and other providers involved in care of dying persons especially in community for home based care have not been well prepared and trained in end of life care, strategies for human capacity development in this area are needs. There is presently a few research on end of life care and related issues in home based palliative care for ESRD. Palliative care is in an excellent position to lead on this work ,particularly through practice-home based commissioning .Clinical leadership and strong commissioning at all levels will be essential to improving the quality of end of life care that cuts across conditions and meets the needs of each population. The goal of home based care palliative care is to provide the best quality of life dimensions of palliative care in patients, families and provider for while nursing standards are variable and some unsatisfactory. There is a need for demonstrations of good care and effective symptom control, even if these reach only a small fraction of the needy population. There is also a discrete body of work on either the experience of carers or patients in managing terminal illness at home.
Statement of public health issues/ problem (gaps)
– Home based palliative care should be structured around patient problems, viewing specialist palliative care only as a service for those with complex end of life symptoms or problems but not provided as a chronic home care aspect,
– The lack of research focusing specifically on community nursing in palliative care therefore represents an important gap in current knowledge,
– Few hospitals provide palliative care services. Bereavement services were not provided for families,
– Healthcare staff and volunteers have inadequate knowledge concerning care for older people in ESRD and EOL and had no definite plan for continuous care,
– A number of barriers to supporting carers were highlighted including lack of resources.
The purpose for this study is to develop a process of home based palliative care to serve for end stage renal disease in end of life for elderly to have best possible quality of life and relieve from suffering from chronic disease , and to provides nursing care and support to people with an advancing life limiting illness who choose to be cared for in their home environment. Public health nurse should have innovation in practice to create good practice follow by indicator of policy. This policy will be helped public health nurses to plan and to deliver appropriate care that integrates active palliative management and using meditation exercise (SKT) practice connect in circles of caring – from individual, to others. The work of the public health nursing service should be redesigned, making the ideals of new nursing in active care service system and it should have a basic palliative care package for home-based care programmes.
Research question
1. What is the characteristic needs of home based palliative care for people living with ESRD uncertainty in EOL stage?
2. How does the model of home based palliative care for people living with ESRD uncertainty in EOL stage ?
Research objectives
General objective:
To develop home based palliative care for people living with ESRD uncertainty in EOL stage
Specific Objectives
1.To explore the characteristic needs of home-based palliative care for people living with end stage renal disease uncertainty in EOL .
2. To explore barriers or facilitators influencing to provide home base supporting palliative care with end state renal disease in their home environment.
3.Identify areas for improvement of support to Structure providers ,Cognitive capacity
Research hypothesis
1.Stimuli frame ,Structure providers and Cognitive capacity will be related to increase competence of carers to support home based palliative care for ESRD in EOL
2. Management , Meditation exercise (SKT) technique will be supported strengthening Model of home based care
Conceptual Framework
-Stimuli frame :
Symptom
Demographic characteristics
Uncertainty in illness: lack of information, complexity
-Structure provider:
Need of home based palliative care,
Social support,
Psychosocial and spiritual support from their environment
Model of home based palliative care for ESRD in EOL
Quality of Life of ESRD in EOL Patients
-Cognitive capacity:
Capacity in K,A,P of health care providers,
Life satisfaction of ESRD in EOL in their environment
The process of uncertainty
Coping with uncertainty:
Management, SKT technique
Home based palliative care
Definition of Terms
Home based palliative care refers to the activities at home which can approach to improves quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention of suffering by early identification and impeccable assessment and treatment of fatigue and other problems, physical, psychological and spiritual in their environment.
End stage renal failure (ESRD ) refers to stage 5 of end stage renal with function kidney failure (GFR <15 mL/min/1.73 m2 and live in radius 5 kilometers from hospital and the progress in EOL stage
End of life in ESRD refers to the progressive symptoms in 3/5 of these symptoms
1.High blood pressure due to fluid overload and production of vasoactive hormones, increasing one’s risk of developing hypertension and/or suffering from congestive heart failure
2 . Extremely high levels of potassium in the blood (severe hyperkalemia) can lead to cardiac arrest and death
3. Increase anemia from decrease in Erythropoietin synthesis and more fatigue than the former
4. Increase edema from fluid volume overload high risk to pulmonary edema
5.Daily activities change from the normal days from asking and observing patients before hemodialysis treatment
Meditation exercise (SKT ) refers to meditation exercise of Professor Dr.Somporn Kutraradusadee Triumchaisri( SKT ) in the SKT 6 :Thai imaginary meditation healing exercise .This concept is let go of tension ,feel free the tightness melting away and give all muscle relax .
Management system refers to manage in the patient’s needs across all domains and take responsibility for co-coordinating the management of the patient’s needs in their environment.
Quality of Life of ESRD in EOL Patients refers to Physical ,Psychosocial stage ,Family-social function Satisfaction in palliative care scale will be divided on 5 point scale from strongly disagree to strongly agree.
Physical: This relates to satisfying bodily needs and minimizing physical distress, in the ways that are consistent with other personal values.
Psychological: This includes maximizing psychological security, autonomy, and richness of living.
Social: This involves sustaining and enhancing interpersonal attachments of significance to the person, and addressing the social implications of dying.
Spiritual: This concerns the need to identify, develop and reaffirm sources of spiritual energy and, in so doing, fostering hope.
Expected benefits of the study
1. Patients and families :
– Improve in quality of life, relief of suffering and enhancement of human dignity,
– Develop the strength to deal with EOL and preparing for death with dignity,
– Improve in coping, reduce feelings of guilt, grief and bereavement and enable family members to access services.
2. Organization level:
– Enhance palliative care in the community for health care services.
– The palliative care model can application in various levels of health service.
– New service of home based palliative care for ESRD patients in EOL
– Promote a holistic approach to care and ensure that health needs are met
3. Health Care Provider level:
– Community nurses will implement the result of the study in order to understand home based palliative care and quality of life in the perception of the patients and enhance guideline for home health care .
– Home based Palliative care and quality of life of the ESRD patients will be clarified in Thai context.
-The results of the study lead to reducing the unnecessary admission in hospital .
4. Public health education:
This model can apply in nursing curriculum. The evidence base support curriculum development in training course, post graduate.
Review Literature :
The literature review is conducted and will be present in following order:
– The End stage renal disease concept ,
– Palliative care and End of life care ,
– Uncertainty in illness of Mishell MH ,
-Meditation exercise : meditation exercise of Professor Dr.Somporn Kutraradusadee Triumchaisri( SKT) in the SKT6 :Thai imaginary meditation healingexercise ,
-Management in palliative care and EOL care
-Related research .
Review Literature from aboard in 1995-2010 most of studied focus on the Body image of patients with ESRD, Patients’ perceptions of their experiences with ESRD and hemodialysis treatment, QOL of patients with end-stage renal disease is influenced by the disease itself and by the type of replacement therapy. Numerous studies have identified the effect of such factors as anemia, age, comorbidity, and depression on QOL. From studied in survival in end-stage renal disease seems to depend more on age and associated diseases than on the form of treatment. Health was scored on a scale from 0 for death to 1 for perfect health. The mean values for hospital-based hemodialysis, CAPD and transplantation were 0.57, 0.57 and 0.80 respectively. Most of these factors appear during the predialysis period, and the adequate management of some of them could influence patient outcomes,Some study show about vocational rehabilitation of ESRD patients must consider physical function and occupational demands as well as co-morbidity and that musculoskeletal disease is key factor in impaired physical function.
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Some studies showed about Measuring Quality of Dying in End-Stage Renal Disease, Psychosocial variables, quality of life, and religious beliefs in ESRD patients treated with hemodialysis and showed about effectiveness of a home-based palliative care program for end-of-life., Impact of socioeconomic status on the quality of life of ESRD patients, Home-based support for palliative care families, Identifying the palliative care role of the nurse working in community hospital ,Community Needs Assessment for Palliative Care Services from a Hospice Organization,
The Gap of palliative care between research in developing and developed countries showed about lack of resources ,lack of time for palliative care ,lack of skills in care and identifying palliative care role of the nurse working in community hospital Obstacles to the delivery of primary palliative care as perceived by GPs, Reviewing a new model for delivering short term specialist palliative care at home. Developing a renal supportive care team from the voices of patients, families, and palliative care staff., Supportive and palliative care for patients with end-stage renal disease, an evaluation of home-based palliative care services. Some research found about home hemodialysis patients had higher quality of life score than did CAPD patients.
Review Literature In Thailand :Most of studies focus on :Attitude affect death and chose of death place of elderly people in Bangkok, Effects of using palliative care model on nurses’ job satisfaction and cancer patients’, Status of End of Life Care in Thailand :in cancer and malignant tumors are the leading cause of death in Thailand, The situational analysis of palliative care in Thailand., The Development of a Continuity of Care Model for the Elderly with Chronic Illnesses Living in the Community, Development Guideline and Model o
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Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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, psychosocial and spiritual
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