PERCEPTION OF PATIENTS/FAMILY AND HEALTHCARE PRACTITIONERS ON PALLIATIVE CARE AS ALTERNATIVE TO DIALYSIS IN THE TREATMENT OF END-SATGE KIDNEY DISEASE IN KUMASI METROPOLIS

ABSTRACT

The main aim of this study was to establish patients/family and healthcare practitioners’ perception on palliative care as alternative to dialysis in the treatment of End Stage Kidney Disease (ESKD) in Kumasi Metropolis. A descriptive qualitative with phenomenological overtone research design was used for this study. A purposive sampling technique was used to obtain 17 participants (8 health care practitioners, 6 patients and 3 family members) out of 30 healthcare practitioners and 32 patients in all the three centres in Kumasi Metropolis. The respondents’ perception on palliative care as alternative to dialysis in the management of ESKD was evaluated using face to face interview. The findings of the study indicated most respondents elaborated that, palliative care is the treatment given to patients whose disease is not responsive to curative treatment. Most of the respondents perceived that patients’ living with chronic diseases will die but to promote peaceful death, quality of life should be offered through palliative care. It is concluded that at the advanced stage of ESKD where dialysis will not improve quality of life, palliative nursing care is the alternative treatment to dialysis in the management of ESKD. It is recommended that treatment options should be made available for patient/family to make informed choice. Palliative care as an alternative management for ESKD should be part of the treatment options in the management of all patients/family with ESKD.

CHAPTER ONE
INTRODUCTION
Background to the Study
Most End-Stage Kidney Disease (ESKD) patients want to learn about End-of-Life (EOL) issues, such as treatment options (including withdrawal from dialysis), and the availability of hospice (palliative) services (Davison, 2010). Discussing prognosis is a key step in EOL planning, but this occurs infrequently or late in the dying process among patients with ESKD. In two studies, 95 % and 97 % of patients with ESKD preferred to be given life-expectancy information—even if their prognosis was poor (Davison, 2010; Fine, Fontaine, Kraushar, & Rich, 2005). Furthermore, patients specifically want their physicians to disclose this information without prompting (Davison, 2010). A validated prognostic tool exists for dialysis patients (Cohen, Ruthazer, Moss, & Germain, 2010), yet both uncertainty regarding individual prognosis and a lack of training about how to communicate prognostic data has limited EOL discussions between healthcare practitioners and patient/family.

The annual mortality rate of dialysis patients approaches 20%–24% (Weiner, 2010). This is higher than that of prostate, breast or colorectal cancer. Many kidney patients are not aware of this and consider renal failure as curable with transplantation or treatable with dialysis (Davison, & Torgunrud, 2007). It has been proposed that open prognostic information to counter this should be offered even before dialysis is started (Davison, & Torgunrud, 2007), but this infrequently occurs. As a minimum, advance care planning should start when the answer to the surprise question is ‘no’ (would I be surprised if this patient died within the next 6-12 months?). Optimal supportive care for end-stage renal disease (ESRD) patients starts with honest prognostic information, tailored to the patient’s information preferences. However, this is not always achieved (Weiner, 2010).

For individuals with ESRD, palliative care can provide support in a number of areas. These include symptom management, advance care planning and in the provision of psychological support and education to both families and patients. There are three main patient groups who may benefit from palliative and supportive care. One group are those who prefer to forgo dialysis to follow the conservative care pathway (Chandna, Da Silva-Gane, & Marshall, 2011; Carson, Juszczak, Davenport, & Burns, 2009; Murtagh, Marsh, & Donohoe, 2007). A second group are those who begin dialysis in somewhat good health. Over time, they become more symptomatic and less well able to tolerate dialysis. A third group are those with relentlessly progressive conditions causing renal failure, such as severely poorly controlled diabetes.

There are great variations in the types of palliative care services for patients with CKD with the development of standards for renal palliative care associated with limited evidence (Murtagh et al. 2007). However, there is growing recognition in high acuity care areas that a holistic approach best supports decisions concerning the use of life-supporting treatments (Fassett, Robertson, Mace, Youl, Challenor, & Bull, 2011). There is increased awareness of the role that palliative care can play in the effective management of patients with CKD (Murtagh et al. 2007) and the urgency around implementing such pathways is of global concern.

Kidney disease is defined as end-stage when a patient's glomerular filtration rate has fallen to < 15 ml/min/ 1.73 m2 (Davison, 2010; Fine, Fontaine, Kraushar, & Rich, 2005). Mortality associated with end-stage kidney disease (ESKD) is high (Fine et al., 2005). The incidence of treated ESKD is rising in the western world, with a corresponding increase in the incidence of diabetes and cardiovascular disease, especially in ethnic minority groups. Survival on dialysis has been shown to be poorer in the older age group, especially in patients with increased comorbidity and in those whose functional status at the start of dialysis is poor (Cohen, Ruthazer, Moss, & Germain, 2010).

Advance care planning is a dynamic process. It involves understanding the patient, their life and their families before having discussions about future priorities and preferences for care. The focus is on improving quality of life as end of life approaches, while addressing family relationships and conflict (Hines, Glover, & Babrow, 2001). These are all priorities that patients themselves rate highly. Advance care planning allows for a more patient-centred approach rather than the focus being primarily on disease, for instance, centred around dialysis decisions (Hines, et al., 2001).

Davison and Torgunrud (2007), on researching advanced care planning, showed that patients wanted more information and in non-medical language on prognosis, disease process and the impact of treatment on daily life, although renal teams may find this difficult, particularly when discussing end-of-life issues, which are less often part of their routine practice. Renal professionals often need prompts to help them open up discussion about the future, as they are much less familiar with how to do this than palliative care professionals. But when sensitive, open exploration of concerns for the future is achieved, the opportunity for discussion is often appreciated by patients (NHS Kidney Care GMMKC, & Advanced Renal Care (ARC) Project, 2012).

There is limited evidence about the duration of survival of conservatively managed patients. One study showed that median survival from entry into Stage 5 chronic kidney disease (CKD) was less for conservatively managed patients (21.2 months) than for those on dialysis (67.1 months, p < 0.001), but for patients over 75 years of age with high co-morbidity and diabetes, this survival advantage was lost (Chandna, Da Silva-Gane, & Marshall, 2011). The decision to follow dialysis or conservative management pathway is individual to each patient.

A national observational study in Australia found that about 14% (one in seven) of patients with ESKD referred to nephrologists plan not to dialyze (Morton, Turner, & Howard, 2012). A change in service provision, with greater systematic inclusion of palliative and supportive care needs, is essential to address the needs of this growing group in Australia (Morton et al., 2012).

Statement of the Problem
Chronic kidney diseases have been identified as a major public health concern worldwide. It has even been suggested that the world in the midst of an ‘epidemic’ with data from USA indicating that a massive 16.6% of the USA population aged ≥ 20 years have CKD (Karger, 2009). The CKD burden is increasing rapidly worldwide. At the end of 2004, 1,783,000 patients worldwide were receiving treatment for ESRD of which 77% were dialysis and 23% had a functioning renal transplant (Karger, 2009). The number of patients with ESRD is increasing at a rate of 7% every year. The average incidence of ESRD in developing countries is 150 per million population (Karger, 2009). Other study conducted in central Sudan in 2009 among 224 ESRF patients found that hypertension (14.3 %) is a leading cause of ESRF followed by obstructive uropathy (11.6 %), glomerulonephritis (9.8 %), diabetes mellitus (8 %), however in 53.57 percent no cause was found (Elsharif, & Elsharif, 2011).

When people are living with chronic illness, quality care should be focused on the patient’s own choices and definitions of quality and provide comfort measure to enhance well-being. Hence the needs for palliative care for chronic illness. Palliative care promotes independence and physical function as long as possible and as chosen by the patient (Scanlan, Gure, Jungbluth, Old, & Chen, 2002). A palliative system will continue active medical treatment with proven effectiveness while offering an individually customized plan to provide comfort, ensure continuity of care and emphasize end-of-life planning. But dialysis units often disregard the advance care planning and fail to address the palliative needs of patients and families (Renal Association, 2003).

There is growing awareness of the need for research into the palliative care needs, and relevant interventions to address these needs, for patients with ESKD. Greater awareness of those being managed conservatively is also occurring, and systematic study of this population is now beginning to take place. Research has been undertaken looking at patient’s experience of conservative management (Noble, Meyer, Bridges, Kelly & Johnson, 2008) and its impact on families and carers (Low, Smith, & Burns, 2008). The majority of the research until now has been UK based (Murtagh, Addington-Hall, & Higginson, 2011), but requires replication internationally. Although great strides have been made, the opportunity for maximizing palliative care for the individual patient who withdraws from dialysis is needed.

There is no known published study on dialysis discontinuation and palliative care for chronic kidney diseases in Ghana. In spite of the terminal nature of chronic kidney disease (CKD), end-of-life care planning is often inconsistent and pathways to palliative care are unclear from both patient/family and health care practitioners. Health professionals’ and patient/family’s perceptions of palliative care and the discontinuation of dialysis may influence their end-of-life decision making. Therefore, the need to evaluate palliative care for end-stage kidney diseases (ESKD) from health care practitioners and patient/family perspectives in Kumasi Metropolitan.

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Item Type: Ghanaian Project Material  |  Attribute: 121 pages  |  Chapters: 1-5
Format: MS Word  |  Price: GH110 ($20)  |  Delivery: Within 30Mins.
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