Palliative care : A positive outcome for cancer patients ?

Curationis 31(2): 43-49 The development of palliative care in terms of recognizing the needs of the dying, palliative care becoming a nursing and medical speciality, the involvement of the World Health Organization in palliative care and the continuous development of treatment modalities available to cancer patients creates the expectation that the outcomes for the patient should also be positively influenced. The purpose of the study was to determine the most common symptoms of advanced cancer patients treated in a public and private hospital in Tshwane, and whether advances in palliative care improved the outcomes for these patients by decreasing the prevalence of symptoms experienced. The design of the study was a quantitative survey. The population consisted of patients with advanced cancer receiving palliative treatment as out patients in radiation and medical oncology clinics in a public and private hospital the Tshwane Metropolitan area. The sampling method was convenient and the sample size was 148 participants (n=148). Data was gathered by means of an interview and self report. Data analysis was done by means of descriptive statistics. The results of the study indicated that a high number of patients still experience problems that could have been prevented. Pain was found to be the biggest problem for patients (76.4%) followed by weakness and fatigue (65.5%), nausea and vomiting (65.5%) and a dry mouth (46.6%). Thirst was reported by 41.2% of the sample. The study provides evidence that the development of palliative care did not have a positive outcome for patients by reducing the prevalence of symptoms experienced. JE Maree, D Cur Tshwane University of Technology SCD Wright, D Tech Tshwane University of Technology


Introduction
For many years, society has denied death by isolating the dying and the old.As reminders of our own mortality, we've sought to keep them out of sight and out of mind.Despite a series of articles by Dame Cecily Saunders in 1959, it was only in 1967 with the foundation of the St Christopher's Hospice in London that it was recognised that the needs of the dying w ere not being m et and the p rin cip les o f p a llia tiv e care w ere established (Gamlin, 2001:4).
In 1990, the World Health Organization (W HO) (Johnson, 1999:2) defined palliative care as active total care of persons w hose disease no lo n g er responds to treatment.According to the definition, control of pain and other symptoms, as well as the management of psychological, social and sp iritu al problems are of prime importance.
The need for palliative care is increasing and it is estimated that by the year 2020, 646 000 people living in sub-Saharan Africa will die from cancer compared to the 412 000 who died in 2002 (WHO, 2006).Taking the current disease burden into account, it is also estimated that one in 200 people living in Africa will need palliative care (WHO & UICC 2005).Of the estimated 720 000 000 people who currently live in Africa, (Fitch's African population page, 2006) 3 600 000 are in need of palliative care.
With the recognition of the needs of the dying and the WHO defining palliative care, development has world wide been ongoing to improve palliation for patients with cancer.These developments include palliative care becoming a speciality discipline in nursing in the early 1980s (Gamlin, 2001:5) and palliative medicine becoming a medical speciality in 1988 (F aull & W oof, 2002:7).O ther developments include that in 1996 the W HO published guidelines for the management of cancer pain that was proven to achieve adequate pain relief in up to 90% of patients (Farrer, 2001:13;WHO, 2008), and since the beginning of the year 2000 until May 2006, 76 drugs were added to the list of approved oncology drugs by the United States Food and Drug Administration (Food and Drug Administration, 2006).
On paper, the expectation is created that the development of palliative care should have a positive impact on patient care and p atien t outcom es leading to a decreased number of symptoms.It would be expected that supportive care to manage the symptoms that accompany cancer -be it due to the disease, treatment or concurrent diseases -would also have evolved in the same way as new treatment modalities.As an aggressive disease, cancer often advances quickly in many patients, and its many diverse symptoms often impair not only the quality of life of the patient and family, but also the effectiveness of pain treatment (Meuser, Pietruck, Radbruch, Stute, Lehmann & Ground, 2001:1).
Considering the development in palliative care and the know ledge of patient symptoms the question arose: What are the m ost com m on sym ptom s that patients with advanced cancer treated in a public and private hospital in Tshwane experienced, and did the advances in palliative care improve patient outcomes for these patients by decreasing the prevalence of the symptoms experienced?

Purpose of the study
T he p urpose o f the study was to determine the most common symptoms of advanced cancer patients treated in a public and private hospital in Tshwane, and whether advances in palliative care improved the outcomes for these patients by decreasing the prevalence of the symptoms experienced.

Research methods and design
The research methods and design will be described in terms of the context, design, population, data gathering and data analysis.

Context of the study
A contextual study was perform ed (LoBiondo-Wood & Haber, 2006:561).Contextual means that the study results are only valid for the situation in which the study was done.The context for the study was the radiation and medical oncology clinics at a state hospital and private hospital where cancer patients are treated.Patients treated at these clinics come from all over South Africa and treatm en t takes place on an outpatient basis.

Population
The population consisted of all patients with advanced cancer receiving palliative treatm ent in radiation and m edical oncology clinics at a state and private hospital in the Tshwane Metropolitan area.Convenience sampling, a form of non-probability sam pling, was used.Convenience sampling refers to the use of the m ost conveniently available patients as study participants and was chosen for this study due to the fact that the patients were readily available when visiting the outpatient clinics.The sample size was 148 participants.

Design
A quantitative survey was conducted.According to Polit and Beck (2004:729), a quantitative survey is described as a process where data is gathered from the specific sample of a population in a structured manner.The ultimate purpose is to d escrib e the phenom enon.A ccording to LoB iondo-W ood and Haber (2006:240-242), an exploratory or descriptive survey design is applicable when the purpose is to gather accurate information about the characteristics of a phenom enon that is specific to a particular group.

Data gathering
The method of data gathering was a structured interview and self report using a ch e ck list as the data gathering instrument.Illiteracy amongst patients did not allow for a self-com pleted questionnaire.The c h e c k list was designed using symptoms and problems that patients with advanced cancer experienced according to the literature (Atkinson & Virdee, 2001: 47;Fink &Gates, 2001:66 andGlass, Cluxton &Rancour, 2001: 37-50).Four additional colum ns w ere provided to specify problems not reflected in the checklist.The checklist was designed to reflect both demographic data and the problems experienced.Participants were asked to respond freely to the following question: " W hat a re the main p ro b le m s and concerns that you are experiencing now ?"Participants were not probed and the reported problems were recorded on the checklist.The checklist was pre tested using 10 respondents and no symptom columns needed to be added.
One field w orker co n d u cted the interviews and was trained to use the checklist to indicate which problems participants identified.The field worker was monitored on a weekly basis to ensure consistency and a high standard of data gathering.

Data analysis
D escriptive statistics w ere used to analyse the results of the checklist and the results were presented by means of frequency figures and tables.Descriptive statistics summarises data to manageable portions and d esc rib e its v arious characteristics (L oB iondo-W ood & Haber, 2006:358).Data were analysed using the SPSS 13.0 programme.

Ethical considerations
It is every researcher's responsibility to ensure that the ethical code is maintained at all times (Brink, 2002:38).Permission to carry out the study was obtained from the Ethics C om m ittee o f Technikon Pretoria, the Ethics Committee of the U niversity o f P re to ria and the management of the hospitals were the outpatient clinics were located.A cover letter handed and discussed with the participants explained the purpose of the research.It also informed them that they could withdraw from the study at any stage and assured them that th eir responses w ould be reg ard ed as confidential.Anonymity was ensured by numbering the checklists sequentially.Inform ed consent w as o b tain ed in writing from all participants.Privacy was ensured as participants were taken aside when interviewed.

Validity and reliability
Validity refers to whether an instrument measures what it is supposed to measure in an accurate manner.A valid instrument will truly reflect the concept which it is supposed to measure.Reliability can be described as the extent to which the instrument produces the same results when repeatedly applied (LoBiondo-Wood & Haber, 2002:338,345).Measures that were taken to assure the validity and reliability of the study include: • The checklist was pre-tested to ensure that participants understood the question and that the required information was gathered.

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The checklist was formulated and specifically planned to address the problems that patients with advanced cancer experience.

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One person collected all the data which avoided data-gathering variability.

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The checklist ensured that data were captured correctly as it allowed responses to be ticked off.

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Structural coherence was ensured through all 148 interviews by means of the checklist.

Results of the study
The format for the description o f the results is the demographic profile of the participants, their disease status and problems most frequently experienced.

Demographic profile
The ages of the participants (n=148) ranged from 14 to 88 years of age, with the highest number of participants in the 50-59 year group (Figure 1)., 2007).
In Table 2 these results are compared with the results o f sim ilar international studies.
Both the first and second studý was conducted before the World H ealth Organization published guidelines on the management of cancer pain.It would be expected that the number of patients experiencing pain would dramatically decrease.
Neither of the studies conducted in 2002 (seven years after the publication of the WHO guidelines) show any improvement in the number of patients that experience pain.This result is supported by Beck and Falkson (2001:87) who state that in South Africa a significant number of cancer patients suffer from unrelieved pain.In contrast with the other studies reflected, constipation was not one of the 10 most common symptoms reported by the participants.Thirst and weight loss were among the most common problems in the study group, a finding not reflected in previous studies.
A comparison of each of the 10 most common symptoms experienced by public versus private patients is indicated in Figure 3.
It is clear that more participants being treated at the public h osp ital than participants being treated at the private hospital experienced pain.Weakness and fatigue, dyspnoea, and weight loss were mostly reported by participants treated at the private hospital and except for pain, more participants treated at the public h ospital suffered from nausea and vomiting, a dry mouth, thirst, cough, depression and insomnia.

Discussion
The study provides evid en ce th at developments in palliative care did not necessarily result in positive outcomes for patients as patients with advanced cancer still suffer unnecessarily.Studies have show n th at the sy stem atic application of the WHO's guidelines for the management of cancer pain achieved adequate pain relief in up to 90% of patients (Farrer, 2001:13)

Conclusion
The study provides evidence that cancer patients still suffer unnecessarily.

Figure 2 :
Figure 2: The most common symptoms experienced by the respondents