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The Essence of Palliative Care

Introduction

Palliative Care is a form of medical care that tries to reduce the disease symptoms instead of providing cure to the disease suffered by the patient (Pathmavathy, 2004). It attempts to mitigate the severity of the symptoms rather than halting the disease itself to boost the quality of life of the patients that are suffering serious diseases. The main goal of palliative care is to relieve such patients of their suffering to ensure they live better lives despite their complex illness (Pathmavathy, 2004).

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Buckley (2008) argues that palliative care enables the patients and their families to cope when their patient is experiencing the critical conditions of the disease. It is applied at early stages in the course of illness and is combined with other therapies meant to prolong the life of the patient.

According to Speck (2006) palliative care generally alleviates symptoms of the disease irrespective of whether the other curative methods make progress or not. It could therefore be used to alleviate the side effects of illness, mostly of curative treatments. In the United States, two kinds of palliative care namely general palliative care and hospice care depending on where (location) the services are offered and also the payment systems that each of them uses.

However, the two kinds of palliative care share the same philosophy and are not distinguished in some other place like the UK (Fallon & Hanks, 2006). The United Kingdom and Canada talks of hospice and non-hospice based palliative care depending on the condition of illness being experienced. Hospice based palliative care is meant for those patients in critical conditions while non hospice based palliative care is provided to those with life-limiting illness connected to their diseases. Palliative care is therefore worth reviewing because of its importance in improving the quality of life of patients suffering from complex illnesses (Fallon & Hanks, 2006).

World Health Organization WHO (2010) has noted that palliative care, when it is delivered correctly, provides dying people with appropriate care by providing them with the required education and help. It exists to ensure that there are good policies that govern the dying process. Talking about the end of life is usually difficult for healthcare workers, due to such reasons as the fear of hurting someone by saying that he/she is about to die, the fear of giving out unnecessary information, lack of effective communication, fear of making someone to lose hope among others. Palliative care, therefore, encourages people to think positively as well as discourages the reflections with regards to death. It encourages people to remain hopeful and not to give up. It also gives hopes of peaceful death, pain relieving as well as symptom control (Forman, 2003).

The reason of choosing this topic is to proof the need for implementing palliative care approaches in the author’s place of work based on the evidence from different literatures. The main focus of this paper is to undertake a critical review of the literature relating to “Palliative Care” and a justification of the use of evidence in improving healthcare practice.

Literature Review

The history of palliative care dates back in 1960’s and it was aimed at addressing the needs of the patients who were terminally sick together with the needs of their loved ones (Charlton, 2002). Palliative care is meant to increase the comfort of the sick person and that of his family by mitigating the effects of the illness and reducing the distressing symptoms experienced by the patient. It is a form of expert symptom management that ensures that the severity of the illness does not disturb the patient and his family (Fallon & Hanks, 2006). According to Morrow (2010), “In addition to expert symptom management, palliative care focuses on clear communication, planning, and coordination of care”. Twycross in his book introduction to palliative care (2003) describes palliative care as aggregate active care given to patients with diseases that are capable of limiting their lifespan especially when the disease is still worse despite the prolonged treatment.

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According to WHO (2004), palliative care is meant to benefit dying patients like cancer cases by helping relieve pain in the body. There are however other scholars who have a divergent view. According to them palliative care has not been as successful as others have tended to portray. For instance, according to Davies (2004) palliative care can only work effectively when the illness is discovered early so that other modes of treatment and therapies can be initiated. Therefore, according to him, patients who fail to learn of their conditions early in life are not applicable when it comes to palliative care. He argues that as much as this process helps the patients in living a comfortable life while suffering from the disease, it is discriminative because it does not take care of those patients who have been heavily affected by this killer disease. He says that individuals fail to learn of their condition not because of ignorance but also as a result of symptoms that resembles cancer as a disease. Therefore, caring for those who have just suffered from cancer alone should be discouraged because it can accelerate the rate at which cancer cells eat the white blood cells in a patient. This, according to Webb (2005), can be brought about by the fact that such patients may feel discriminated and hence stigmatized.

In addition, Pathmavathy (2004) has contended that palliative care helps in alleviating pain from the patient as well as providing a relief from other related symptoms. However, he has noted that different people have different cultures, and as a result different ways on how they perceive patients suffering from cancer. According to him in the developing countries for example, some communities believe that people suffering from cancer are usually bewitched. As a result such kinds of people are stigmatized and treated as outcasts. Therefore he argues that in such cases palliative care does not relief pain but rather adds suffering to the patients thus making them die fast compared to others who are cared for by their members of the family.

Moreover, Foley (2004) has noted that palliative care uses a holistic approach in the attempts to address the needs of all those people who are suffering from cancer. However, according to Hain (2010), palliative care does not embrace a holistic approach because according to him, the whole idea of just addressing only those patients who have just been diagnosed with cancer makes it less of an effective approach as it neglects other chronic conditions. According to him, such measures would help in improving their state of survival. If this fails to be initiated he argues that all that it has achieved would all be in vain.

Other scholars like Russell (2003) have noted that palliative care is not as perfect as is thought to be. For instance he says that people believe that palliative care gives the victims of cancer a chance to live an active life despite their conditions. However, according to him and other scholars, some of the palliative care given to the patients makes them feel better in the short run but in the long run these patients become weaker and end up dying to conditions associated with palliative care. For instance, radiations meant to cure cancer makes the patients develop a weak body immunity thus becoming vulnerable to attacks by other infections.

Furthermore, William (2008) has also noted that palliative care is a source of misery to the other members of the family who are the care takers of the patients. He says that the cost of acquiring such kind of care is usually like a night mare to many families especially those from marginalized areas particularly in the third world countries. Thus, according to him, palliative care fails to meet its intended function. His recommendation to the various governments in the world is that palliative care centres should be decentralized so that as many people as possible get to access these services and reduce the number of deaths related to cancer.

According to Dickman (2010), palliative care has no intention of accelerating nor postponing the death of a patient but only making it a peaceful death. However, according to Clark (2002), the whole idea of palliative care is to help a patient live longer without experiencing a lot of pain in the affected part. He says that if a cancer patient is left alone without care from the government or the members of the family as well as medical practitioners, he/she is likely to die more quickly. Therefore, the act of providing palliative care according to him is meant to help the patient live longer and as a result postpone his/her death. He says that what Dickman (2010) should have stated is that palliative care is meant to help the patient die without experiencing too much pain that is usually part of the cancer.

Penson (2002) says that not all communities in the world accept patients diagnosed with cancer. Therefore, according to him, the acts of segregating them from the other cancer free population may affect them psychologically as well as spiritually regardless of the care that they may receive in the care centres. He has cited ignorance as the main reason for treating cancer patients in such away. In regard to this he says that it is the duty of the government to try and spread cancer awareness to people so that patients can be treated as any other people and be accepted within the society.

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There are many studies conducted in the field of palliative care where most of them support the implementation of the same. However, for this assignment, the author will only critique four studies in the following sections of this paper:

Literature Critique

Belchamber and Gousy (2004) conducted a study on patients’ perspectives on rehabilitative care in a specialist palliative day care centre. The study had a clear and concise abstract, stating the purpose of the study, the study design, and the outcomes. The purpose of the study was to explore cancer patients’ perceptions of the rehabilitative care approach, which they experienced in an independent specialist palliative day care centre. The research question shows that the research was aimed to explore patients’ perceptions of the rehabilitative care approach at a specialist palliative day care centre and consider how the rehabilitative care approach may be improved. The researcher sought to investigate the perceptions of people with cancer of their symptoms, how people with cancer perceive the rehabilitation they receive, and lastly the attitudes or beliefs people with cancer have about the rehabilitation they have received.

The literatures reviewed by the authors are almost old articles and the recent one is 2001 publication. However, there were no secondary sources used and no emphasis on anecdotal evidence. The authors discovered evidence from this literature review which indicates that psychological distress is linked with fatigue, which emerges as the key symptom in people with cancer and has strong influences on levels of pain, nausea and dyspnoea.

The research approach was qualitative as it could describe the form and nature of a particular phenomenon (Belchamber and Gousy, 2004). Open ended questions were used. Out of the five main qualitative methodologies, phenomenology was chosen as a research design as it is the most appropriate to explore the rehabilitative care approach as it aims to uncover the essential structure of a phenomenon by exploring the outward appearance and inward consciousness rooted in the patient’s memory, image and meaning.

Ethical approval was sought from the local ethics committee and access was obtained from the researcher’s employer. Following verbal consent, the researcher asked the participants for informed consent before the semi structured interview. And for the sampling, potential participants were required to be experiencing one of the four main symptoms of cancer (pain, dyspnoea, nausea, or fatigue). It was necessary to eliminate from the study people with cancer who had other medical conditions, which would affect the symptoms above. The participants needed to be capable of understanding the study and what is involved, as well as cope with an interview that lasts for one hour.

Data was collected on semi structured one-to-one interview that lasts for one hour. Interviews were recorded and transcribed verbatim. Pseudonyms were applied so that participants could not be identified. Data looks not reliable as it describes a very small number of participants. However, it is valid as the results provide an insight into patients’ perspectives of a rehabilitative care approach at a specialist palliative day care centre. The results were clear and complete, that was tabulated and then findings were discussed in more detail. Results highlighted patients’ perceptions of the rehabilitative care approach at a specialist palliative day care centre.

In the discussion, the authors stressed on a number of issues that have emerged as a result of the study, which may have important implications for the care of people with cancer. Patients’ perspectives of their symptoms, beliefs and attitudes towards the rehabilitative care approach were explored.

The authors concluded with a number of recommendations for future practice. They suggest that further investigation is required in: diversional therapy, aromatherapy, and management of lymphoedema. They recommend the development of an ownership concept and improved collaboration and multidisciplinary networking. The authors note that concerns regarding understanding of palliative care and palliative treatments must be addressed. It is also recommended that better communication between health care provider and patient be improved.

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The article’s references were accurate and comprehensive but older than ten years of publication. However, the title was clear and indicative of what was studied. Generally, the paper was detailed and well written. Sample was small but provides the means to increase health care professionals’ awareness and insight into the rehabilitative care approach.

Craft, et al. (2005) conducted a study on knowledge of treatment intent among patients with advanced cancer. The article had a clear and concise abstract. The researchers sought to assess the level of awareness of diagnosis and objectives of treatment among those with suffering from advanced cancer.

Literature reviewed by the authors showed that patients want to be informed about their diagnosis and treatment. The study was longitudinal and authors used a qualitative approach. Data was collected using a survey that was conducted following a written informed consent. The inclusion and exclusion were identified. In the discussion the authors identified that a high number of patients believed that they were getting curative treatment not palliative. The discussion identified the benefits of the results in the counselling sessions when patients are to make decisions for treatment.

The study may be considered to be valid as it gave a clear answer to the research question. However reliability is doubtful as people’s views are changeable from generation to another in regards to knowledge of treatment. The authors concluded by recommending further studies to explore patient’s knowledge of treatment as populations change over time. However, generally, the article had enough references from different sources.

Winter, et al. (2007) conducted a study titled; imagining the alternatives to life prolonging treatments: elders’ beliefs about the dying experience. The abstract was clear and concise that stated the purpose of the study, design and summary. The study purpose was to explore the older peoples’ beliefs about dying and prolonged treatments and what may happen if they chose not to take the prolonging treatment. The research questions were many; what are the patient’s assumptions about dying, how death is viewed by them, and do they expect a palliative care during the last stages of their life. Authors reviewed articles of ten years publications that explored evidence about the dying process. The research was qualitative in its approach and the authors used a semi structured interview with open ended questions.

The research design was exploratory study and there was no information about the ethical approval. The authors used convenient sampling of forty older people that were recruited through advertisements and they did not meet any of them. Consent was only verbally and not in writing. Data was collected through telephonic interviews conducted by two experts in interviewing older people. The discussion indicates that there is lack of information on palliative care among the older people that suggests focusing on health education. The study may be reliable but it is difficult to validate a qualitative study as the knowledge of people differs. In the conclusion the authors recommended that further studies to be conducted and communication between patients and healthcare workers.

Connell, et al. (2010) conducted a study on the perceptions of the impact of healthcare services provided to palliative care clients and their carers. The abstract of the study is clear and concise and the title accurately describes the study. The study purpose was also clear and research question was defined as well. Literature reviewed was articles of older than ten years. The research was qualitative in its approach with evidence of ethical approval. Sampling was done randomly and by using the inclusion and exclusion criteria.

Data was collected using semi structured interviews. The discussion was relating the findings to the literature review and the research question. Data may not be considered to be reliable as it presents a small number of participants. However, the data can be valid as it provides a clear picture of patients and their carer’s perceptions. The authors concluded by recommending further studies in the same field but may in a larger sample.

Maltoni, et al. (2005) carried out a study to find out the prognostic factors in advanced cancer patients. The abstract gives a brief and clear summary of the entire study and one gets to grasp the nature of the study, its findings, recommendations, and discussion at a glance. The main objective of their study is clearly stated. The study provides good introduction to the study and sets out a clear understanding of the importance of the study. The methodology used in carrying out the study is also well elaborated and justified. The study gives a step-by-step account of how the study is executed. The presentation of the results is also done elaborately especially by tabulation. The recommendations made by the authors are based on their findings making the study an evidence-based one. The study also offers an elaborate discussion of the findings and recommendations concerning the importance of prognostication especially in patients with advanced cancer. The authors note that ethical considerations during prognosis at end of life are crucial in this process. It can be concluded that this study is reliable and hence believable.

In their study, Hinds, et al. (2001) explore the impact of cancer on decision making by adolescents, their parents, and providers of healthcare services. The abstract provided by the researchers is quite comprehensive. The purpose of the study was primarily to formulate guidelines that will help in the making of decisions in paediatric oncology. The study used three designs for three studies. In the first study, retrospective design was used. The second one employed prospective type of design while cross-sectional design was used in the third study. All the three were descriptive. In the retrospective study design, 39 guardians and 21 healthcare providers were involved, while 52 parents, 10 teenagers, and 22 physicians participated in the second study. For cross-sectional design, 43 parents were interviewed. The data from all participants were collected using six open-ended questions. The analysis of interview data was done using the semantic content analysis technique.

The findings showed that information on the patient’s health and disease status was one of the most frequently reported factors affecting decision making. Others that were identified include the extent to which the available options of treatment have been tried as well as the confidence in the healthcare service providers. A sense of support and care from the healthcare team was found to influence decision making. The researchers conclude that the overwhelming agreement that exists as far as factors influencing decision making is concerned, then they should be used as the basis for developing evidence-based procedures in palliative care.

Steinhauser, et al. (2000) conducted a study on the factors considered important in palliative care. They focused on key players in the process like patients, family, medical doctors, and other healthcare providers who are usually there at the last moments of a patient. The abstract of the study was clear and concise since it states the objective of the study, design and setting, the participants, major outcomes, and conclusions. They were inspired by the fact that little has been done to provide empirical evidence on key factors at the end of life. The purpose of the study was to establish the most important considerations at the end of life by various stakeholders who must be involved in one way or another in the care of a patient. They used the cross-sectional, stratified random national survey. 340 seriously ill patients, 332 families who bereaved recently, 361 physicians, and 429 diverse healthcare providers including the social workers, nurses, hospice volunteers, and chaplains participated in the study.

The researchers use a 5-point scale to measure 44 attributes of quality that may be regarded important at the end of life. They then compared 9 major attributes in the four groups according to their rankings. It was found that 26 (>70%) of the attributes were considered as being important in all the 4 groups. Some of them included: management of pain and symptoms, readiness for death, satisfaction with treatment, decision making on treatment options, among others. Some (8) of the items were ranked highly by patients but physicians did not consider them as being very important. The results section reveals further findings in a very clear and understandable manner. The study concludes by noting that despite most factors being regarded as being important to quality at the end of life, it is evident that their ratings vary from one person to another depending on their unique roles which explains why their diverse perceptions when it comes to quality. This study is quite good since it examines pertinent issues in palliative care that little effort has been expended on. Given the large number of participants selected for the study, the findings can be generalized.

The success of any treatment depends greatly on the relationship between the patient and the doctor. Rothenbacher, Lutz and Porzsolt (2007) conducted a study to investigate the truth of this statement. They used patients with advanced cancer who are hospitalized for palliative care to establish whether the patients wanted to be involved in decision making about their treatment or not. They also investigated the degree of awareness among the physicians on the patient’s desire to participate in treatment.

The study involved 59 individuals with terminal cancer in hospital, 89 patients admitted with chronic non-neoplastic disease, and another 115 individuals not admitted in hospital. Standardised questionnaires were used to collect data from the participants including the physicians attending to the admitted patients. The study found that 73% of those with advanced cancer would collaborate with their doctors in decision making. It was also established that the degree of patient involvement in decision as far as treatment is concerned increased with the level of education, employment, and younger age. The study concludes by noting although patients would want to be involved in decision making, their physicians were not aware of this. The study is reliable because of the good number of patients participating in the study as well as the different types of patients. The findings and recommendations are also of acceptable standards.

A study by Smith, et al. (2010) sought to investigate the epidemiology of pain during the last 2 years of life. The abstract of the study is brief and concise. It captures the background, purpose, design, setting, participants, results, and conclusion. The main objective of the study was to describe the prevalence and correlates of pain during the last 24 months of life among older adults. This was an observational study involving 4703 decedents. The measurement criteria focused on pain that could be considered of clinical significance. This is a level of pain that causes disturbance to a patient even at moderate severity. It was found that pain increased with less time to live. However, the study could not establish the location, cause, and the treatment of pain. The conclusions of the study on palliative care and pain are generally agreeable.

Waghorn, Young, and Davies (2011) researched to find out the opinions of patients with cancer on the relative importance of place of death in the context of a ‘good death’ in a cancer center in England. The primary purpose was to establish the relative importance of place of death to those with advanced cancer and undergoing treatment. The data collection was done by gathering information from electronic patient record system. The patients were also interviewed on end of life issues. The patients also indicated the factors that they associated with ‘good death’. 120 patients were involved in the study.

The study found that 80 patients representing 67% indicated that home was an acceptable place of death while 51 (42.5%) of them said that they would prefer to die at home (PPD). The researchers give further findings from their study on the various opinions of individuals. However, the authors conclude that place of death may not be a reliable factor to determine the quality of end of life healthcare provisions. It can thus be concluded that the findings are reliable given the huge number of patients involved in the study. A smaller number would have raised more questions given the subjective nature of study, the study of opinions.

Conclusion

It is quite evident that palliative care is meant to benefit the patients who are dying and patients suffering from killing conditions such as cancer. As some writers have noted today cancer has become one of the leading killer diseases in the world. The most interesting thing about it is that it cuts across all generation therefore palliative care would be useful at all ages (Davies, 2004).

When it comes to carrying out a deeper research on a particular need, researchers should ensure that they at least try and cover a majority of the population in a given region so that they can develop a clear insight pertaining to the disease or a service need like palliative care. Furthermore bearing in mind that the world is comprised of different people with different cultural backgrounds researchers need to try and understand these variations so that when they are writing their conclusions they ensure it covers a greater portion of some of these communities. For example the issue of looking down upon people characterized in some communities should have been known by researchers if they had carried out their research comprehensively. Lughton (2006) argues that no culture is greater than the other and therefore people should never despise what other people believe in as this is important in trying to enlighten them so that they can change the way they look at certain things like people suffering from killing diseases like cancer.

The four studies conducted on palliative care reviewed by the author did not come to a clear cut answer for the need for palliative care, however researchers recommend its use and to conduct further studies. On the other hand, the number of cases participated in those studies is small and hence indicates further studies to be conducted on larger samples in different communities. Although the palliative care has been criticized for all negative aspects of it, it is worth giving credit where it is due and where evidence proved its benefits for the dying patients. Therefore, I recommend for its continued use even in future and maybe implanted in Oman at a wider angle after further studies are conducted.

References

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