Introduction and Background of the Problem
The twenty first century has seen tremendous improvements in medical science and health care in the society. This has been marked by discovery of new drugs and improvement of existing ones, together with adoption of new medical practices to care for patients. This is for example the introduction of life prolonging drugs and medical operations to patients with terminal illnesses. The effect of this is that the nature of dying has been greatly changed. Whereas people were likely to die from sudden infections and injuries in the past, the same does not apply today in most cases. Death is more likely to occur slowly and at an advanced age. This is usually as a result of a life limiting or chronic condition such as cancer, heart complications and other such conditions.
Despite the efforts of the medical teams and improved drugs and care, there are cases where it is determined that the patient is going to die anyway. For example in the case of advanced cancer, the health care team may determine that the condition can no longer be controlled by drugs. Medical testing and treatment has to be stopped since it is not beneficial to the patient. But this does not mean that care for the patient comes to an end. Rather, it must continue, albeit in a different course. Treatments and care that hitherto concentrated on controlling the condition is now focused on making the life of the patient comfortable as they approach death. This has seen an increase in the number of people who are seriously ill and dying but who at the same time have an increased period of time to live. The care the goes into making the last days of these patients as comfortable as possible is what composes end of life care. Comfort is availed to them by relieving pain, both physical and psychological, by use of drugs and other intervention measures.
The term “end of life” can be defined variously, depending on the orientation of the scholar and the context within which it is used. Dyer (2006: 1) conceptualises it as that “period of time [in a person’s life] that is marked by disability or disease that is progressively worse until death [and which subsequently leads to death]” (1). In a nutshell, according to this scholar, “end of life” is the final stage in someone’s life.
However, it should be noted that there is no precise definition of the interval that composes this period or its stages. There is no defined threshold past which a person is said to have embarked on their end of life stage. But there are some components or indicators that characterise it. The National Institutes of Health (2004: 1) identifies such two components. The first is the presence of a chronic or terminal condition that may persist or fluctuate with time. Cancer, Acquired Immuno Deficiency Syndrome (AIDS) and such other conditions fall under this category. They are conditions that persist over the life time of the individual, fluctuating with the form of treatment the patient is receiving and the presence of other symptoms.
The second component of end of life is the presence of “symptoms and impairments arising from the underlying irreversible disease calling for formal or informal care” (National Institutes of Health 2004: 1). The symptoms and impairments thus identified have the potential to lead to death of the patient.
As earlier stated, end of life care is that form of care that is availed to patients who are at this point in their life. The care can be formal, whereby it is availed by paid professionals, or it can be informal, availed by unpaid care takers. An example of a professional and formal end of life care is that provided for patients by health care personnel in hospices or at home. Informal care is for example that which is provided by the family members to one of their own. Other terms associated with end of life care include comfort care, supportive care and symptom management (Dyer 2006: 1).
According to the British National Health Service (2009: 56), every human being has the right to experience a dignified death characterised of care and support from family members and health care providers. However, this rarely happens. The reason behind this, according to this organisation, may be the failure of care staff to recognise or even acknowledge signs of an impending death of a patient. This means that the care is not availed to the patient if the need can not be identified.
This is significant, given the number of deaths that occur in England every year. The secretary of state for health, retired Honourable Alan Johnson, is quoted in Department of Health (2008) saying that around “half a million people die in England every year” (7). Majority of these people must have transitioned through an end of life stage, especially those who died of chronic and terminal illnesses. This in turn means that majority of them must have been in need for end of life care.
It is a fact beyond that some patients do receive excellent end of life care. This is evidenced by the number of care agencies such as hospices to be found within the country. But it is also a fact that majority of deserving patients miss out on this very vital service, according to Department of Health (2008: 11). There are various reasons why this is so. One of them, as earlier identified, is lack of identification of the need on the part of the care providers. On a complex level, lack of linkage in the provision of the services renders it a halo of poor quality. This is especially linkage between staff and agencies, leading to a break down in communication between the two.
From surveys conducted by the Department of Health (2008: 8), many Britons, especially those suffering from terminal illnesses, express a desire to die at home. But this is never the case. Lack of communication between the patients and the care providers, and to some extent the families, leads to many of these people dieing in an acute hospital, a place that they would have wished to be cared within.
One of the most important facets in end of life care provision is the incorporation of the patient’s preferences with the practice. In a study conducted in 2009 and titled Personalised End of Life Care: Associations between Patient Preferences and Treatment Intensity near Death, authors Wright, Mack, Trice, Balboni, Block and Prigerson hold that medical treatment (and any other form of care) at the end of life “should be responsive to patient values (preferences)” (3). This is considering the fact that the patient is the client, the major beneficiary of the care. As such, all activities should aggregate around their wishes. But in a study of 317 cancer patients for a period of four months revealed that this is far from what actually takes place. Regional supply and availability of health services coupled with the health care professional’s practice pattern seem to take precedence in informing the course that the service is going to assume (Wright et al 2009).
Wright et al views are supported by another study conducted by Hofmann, Wenger, Davis, Teno, Connors, Desbiens, Lynn and Phillips, titled Patient Preferences for Communication with Physicians about End of Life Decisions (2009: 23). These authors are of the view that physicians and other care givers are frequently unaware of the preferences of the patients as far as end of life care is concerned. They put this down to a break down in communication between the physician and the patient.
Kass-Bartelmes and Hughes (2008: 89) believe that discerning the preferences of patients in end of life care is complicated by the interplay of various factors. One of them is the age of the patient, whereby children and the very old find it hard to coherently communicate their preferences to the care providers (Kass-Bartelmes & Hughes 2008: 67). In this case, the latter are forced to act of what they believe to be the best of their patient’s interest, which may be far from what the patient may have preferred should they have had the ability to communicate. The nature of the illness also compounds the problem for the care givers (Kass-Bartelmes & Hughes 2008: 67). The illness may be so advanced or debilitating such that the patient is not able to make known their preferences. A case in point is a mentally ill patient. Even if this patient is able to communicate their desires pertaining to end of life care, probably their wishes will not be taken to regard by the providers. The ability of medicine that is being administered to sustain life or lack of it thereof is another crucial factor that determines the incorporation of the patient’s preferences into the care provided. For example, the patient may prefer to have their life prolonged, but bottlenecks existing in research conducted in that field may make it impossible to avail such life prolonging medications (Singer & Lowy 1992: 93).
The emotional roller coaster experienced by the families as they see their loved ones in pain will also, to some extent, determine the extent to which the preferences of the patient are regarded (Lee 2003: 39). The family members may find it so taxing to see their patient in pain, and may wish for discontinuation of life prolonging medication, regardless of the patient’s wishes which might have been to the contrary. The family is unable, in some instances, to make decisions as to the continuation of medication or lack of it.
Preference for End of Life Care in Developed Countries by Individuals with Different Cultural Affiliations and Ethnicity
In the preceding section of the paper, the author examined the importance of taking into consideration the preferences of patients when providing end of life care. It is important to note at this juncture that this preference does vary both in time and in space. It does vary from one person to the other, from one society to the other and from one period to the other. It is not frozen in time, neither is it frozen across cultures. Rather, it is a dynamic phenomenon, shifting with the changes in the society and the experiences of the people.
Thomas, Wilson, Justice, Birch and Sheps argue that “anticipatory decision making (preferences) about end of life care (has been) a predominantly North American concept” (5). This statement may be justified to some extent by the history of end of life care in North America, which is relatively lengthy than that of other nations. However, the care also exists in other countries, albeit in varying degrees of intensity. In England, Dame Cicely Saunders founded the Modern Hospice Movement in 1967 (Brown 2008: 1), and the government, under the Department of Health, has put into place an End of Life Care Strategy (Department of Health 2008: 9). St. Christopher’s Hospice, which availed care for patients who were dying of incurable and advanced cancer in the society, was the one founded by Saunders in 1967 (Department of Health 2008: 9). But the first hospice was founded in 1842. This was by Madame Jeanne Garnier, in Lyons (Brown 2008: 1).
The variations in mode of providing end of life care to patients and their preferences hinges on several factors. One of them is their culture. A patient from a culture which does not support invasive medical procedures such as surgery and blood transfusion is likely to express preferences advising the care providers to desist from carrying out such procedures on them. A case in point is Jehovah Witness believers, whom it is against their belief system to have a blood transfusion. Ethnicity is also another factor. Ethnicity on its part brings with it a horde of secondary factors that determine the preference of the patient when it comes to provision of end of life care. It is the patient’s ethnic background that determines their culture, and as such, their belief system. This system, like earlier stated, will inform their preferences. Ethnicity also brings with it the issue of economic capability. A patient from a black back ground may not have the financial muscle to fund for expensive end of life care, and will prefer their survivors to utilise the little money that is available on other aspects of their life rather than for providing care to them. This is especially so in states and countries where health service is not funded by the state.
This critical literature review is going to address the preferences for end of care in developed countries by individuals with different cultural affiliations and ethnic backgrounds. The study is going to compare this preference in the context of Canadian and Hong Kong health care systems. It will take the form of a critical literature review, whereby relevant literature covering this topic is going to be analysed from a critical pedestal.
The study is going to revolve around the following thesis statement:
Existing literature points to the fact that preferences for end of life care in developed countries varies with the individual’s cultural affiliation and ethnicity.
This thesis statement will be addressed by reviewing literature in this field from Canada and Hong Kong. The researcher will assume an open minded stance, believing in the fact that the available literature may support or refute this statement.
Research questions act as sign posts or beacons that direct the direction that the researcher is going to adopt in conducting the study (Hart 2004: 212). The whole of this study will revolve around answering a set of questions identified by the researcher. The research questions are listed below:
- Does individual preferences for end of life care in developed countries differ with cultural affiliations and ethnic backgrounds?
- What brings the difference in (1) above or lack of it thereof?
- What are some of the similarities and differences between preferences for end of life care in Canada and Hong Kong?
- What brings the similarities and differences in (3) above?
Purpose and Significance of the Study
In any given field, it is likely that a lot of studies have been carried within it in the past. This means that a lot of literature exists to this respect. Any new study is justified by the significance that is going to accrue to the field as a result of it. The purpose of the study, from this perspective, is to add value to the field by unearthing new information (Bateman 2001: 213).
Technological advancements have made it possible to prolong lives of patients with conditions that were instant killers in the past. Conditions such as AIDS, cancer, Alzheimer and such others need not be death knells for the patients; at least, not instant death sentences. Anti retrovirals and other chemotherapy techniques and surgery have made it possible for these patients to live a far much longer with the condition than it was in the past. The number of seriously ill patients has as a result peaked, and end of life care demand has risen in tandem with this. In this background, it becomes very important to understand the dynamics of end of life care. One facet of such dynamics is the variation of the preferences of individuals with culture and ethnic background.
To this end, the contribution that this study will make to this field can not be ignored. The findings from the study will help professional, formal care givers and informal care givers to realise the fact that end of life care preferences is not a universal, one size fit all phenomenon. Realising the fact that preferences depend on cultural and ethnical backgrounds of the individuals and their families will help these care givers provide services tailored to individuals. This will in effect enrich the career of the care givers by satisfying their clients, while providing a satisfying experience to dying patients.
Scope and Limitation of the Study
Bottlenecks and other hurdles are expected features of any study (Bland & Peacock 2000: 810). These are, to some extent, brought about by the scope and limitations of the study. Academic fields are diverse entities, entities that can not be adequately addressed by a single study. For an effective endeavour, there is need for the researcher to demarcate the area within which the study is going to be conducted. The boundaries thus identified make up the scope of the research. Limitations are facets that should have been otherwise incorporated in the study, but due to several reasons, the researcher was unable to adequately address them. This study is no exception; there are scopes and limitations that the researcher had to address.
The study is going to cover literature review pertaining to end of life care in developed countries only. Developing countries are not going to be addressed, despite the fact that end of life care is to be found in them in varying degrees. The developed countries will further be narrowed down to two countries only; Canada and Hong Kong. It is assumed that the experiences and contexts of these two will adequately represent the variation or lack of it thereof in developed countries.
The researcher is going to address preferences in individuals with differing cultural affiliations and ethnicity. And other dimensions such as age and nature of illness will not be addressed. These are taken to be constants, such that they do not affect the variation from one culture to the other or from one ethnic background to the other.
Critical literature review is the methodology that will be adopted in this study. This means that the researcher will in effect be relying on the findings of other scholars in the field. Primary data will not be availed as a result. As a result of this, the researcher has to take care in scrutinising the authenticity of their sources, such that unqualified and potentially misleading information is not included. The researcher will not have the freedom of manipulating the variables of the studies conducted; rather, they will have to work with the findings of other people.
Objectives of the Study
Throughout the research, the author will be guided by one major objective. This is the critical review of literature addressing preferences for end of life care in developed countries by individuals from different cultural and ethnic backgrounds. The literature review will revolve around Canada and Hong Kong, two developed countries. To achieve the major objective, the writer will be guided by a set of specific objectives. It is by addressing the specific objectives that the writer would have effectively addressed the major one. The specific objectives are as listed below:
- an analysis of some of the determinants of individual preferences for end of life care
- aspects of individual preferences for end of life care that are different and similar between cultural affiliations and ethnicities.
- how individual preferences for end of life care affects provision of these services
- Analysis of individual preferences for end of life care and patient satisfaction
- an analysis of how care givers can make use of differing individual preferences for end of life care to improve their work
Definition of Terms
This study is going to make use of terms that may have a different meaning in its context from their normal usage. Majority of these terms, as the reader will note, are closely related. However, the researcher will make effort to highlight the differences between them as they will be applied in the study. This is to avoid confusion. This section defines some of those terms as used in the study:
End of Life
End of life, as Dyer (2006: 1) aptly puts it, is that period of time in a person’s life that is characterised by disability or illness that becomes progressively worse leading to eventual demise. This is the meaning that is going to be adopted by this study.
End of Life Care
This is the kind of care that is availed to persons when they are transiting through their final stages of their life (Dyer 2006: 1). Hospice care, comfort care, palliative care, supportive care and symptom management are other terms that can be used interchangeably with “end of life care”. However, in an effort to avert confusion, the researcher will use “end of life care” where all the other terms can be utilised to convey the same meaning, unless otherwise stated.
the term hospice came into common use in England in the 1960’s. This is with the launch of St. Christopher’s Hospice in London (Kanabus 2009: 1). The term is used to conceptualise provision of care to patients who are progressing through the final stages of a terminal illness or a condition that can no longer be controlled. The aim is to make the final days of the individual’s life more comfortable by way of relieving their pain and a host of other symptoms. This is when the underlying disease or condition can not be treated or cured by the available medication. The best example is that of cancer patients in the advanced stage of the disease.
This term will be used to denote the provision of care aimed at improving the quality of life of patients or individuals who are faced with life threatening illnesses and conditions. The World Health Organisation (WHO) as quoted by Thomas et al (2008: 789) defines this as an approach aimed at improving the quality of life of patients together with their families faced with challenges emanating from life threatening illnesses. The care is availed to both the patient and their family. This should be differentiated with hospice care as used in this study. Whereas the latter is used to refer to care availed to make the life of the patient comfortable with the knowledge that they are going to die, the former is mainly composed of treatments or other forms of care availed to the patient when their condition is still manageable.
This is the form of care that is provided to support a person afflicted with a life threatening condition together with their immediate family members (Kanabus 2009: 1). It is a term used to refer to a wide range of care, encompassing hospice, end of life and palliative care. It can take the form of medical care, physical, social as well as psychological form of services such as counselling. The aim is to make the last days of the individual as comfortable as possible from all aspects.
This care is also provided for a person who is afflicted by a life threatening or terminal illness. This is especially when they are in the final stages of such illnesses, the end phase of their life (Kanabus 2009: 1).
It is important to note at this point that the terms defined above may have other definitions and applications in varying contexts. The researcher acknowledges this fact, and effort has only been made to give their definitions as used in this paper.
The researcher is going to utilise critical literature review as the methodology for this study. A number of articles will be selected, which covers the topic of individual end of life preferences in Canada and Hong Kong. The articles to be analysed will be mined from the school library’s database, internet and other sources that the writer deems to be resourceful. The critique of the articles will then be summarised. The results will be represented using thematic tables and other representation methods that the researcher finds useful.
Professional and Personal Context
According to Bateman (2001: 213), every study must be put into a context, for it is not possible for it to exist in a vacuum. The context can be the academic or professional life of the researcher, or their experiences in life. It is this context that informs the audience as to the reasons why the researcher chose to work on a particular topic from a myriad of many others. Given that humans are taken to be rational and capable of making rational choices, it is then expected that there is a rational reason why the researcher chose to work on this particular topic. This context will also inform the audience the importance that the researcher attaches to the study they are conducting.
The impetus for this study was borne out of a personal experience that the researcher had while their class was conducting a field survey on end of life care in the county. The researcher had an encounter with a cancer patient of Indian extraction who had been put on hospice care. The patient had made it abundantly clear that they do not wish to be put on life prolonging medication, preferring only pain relieving treatment, to the chagrin of the care givers. He insisted that when his time comes to die, he should be let to go, and no effort should be made to revive him. The care givers tried to convince him to be put on a new drug that was undergoing tests, and which promised to prolong the life of the patient considerably, but to no avail.
This was a relatively new experience to the care givers. They were used to determining the course that the process will take, with little or no input from the patient. The researcher contrasted this case with other patients who did not object to life prolonging medication. The interest to uncover the dynamics of this variance in preference got the researcher thinking. They were interested to know why two people from different cultures and with the same ailment will exhibit differing preferences as far as end of life care is concerned. Could cultural background and ethnic orientation have anything to do with this? It is out of this that the researcher decided to carry out a research based on critical review of existing literature on this topic. They chose to research on preferences of individuals from two countries with differing cultural and ethnical backgrounds. Canada and Hong Kong were chosen. Canada was chosen because the researcher was a bit familiar with the health system of the state, having lived in Ontario for a period of two years when their father was a doctor in a state hospital. Hong Kong on its side was picked because of her rich culture, being home to on of the most culturally entrenched society in the world. It was also chosen because her culture is relatively different from that of Canada, being in a different continent.
This chapter sought to introduce the audience to the research that will be carried out later on in the paper. It was a sketchy representation of the process that will be followed in accomplishing the study. The research questions, objectives of the study and methodology that will be followed were some of the issues that the researcher introduced in this chapter.
The following section is going to present a review of literature that is available in the filed of end of life care, with a bias in literature covering cultural and ethnical dimensions of the issue. This is a preliminary literature review, which will inform the researcher as to the direction that the critical review will assume.
Preliminary Review of Relevant Literature
As earlier indicated in the paper, a lot of literature covering past studies that have been conducted exists in any given academic field. It is up to the researcher conducting any new study in a given field to familiarise themselves with literature this literature. The exercise has a number of uses to the researcher. It helps them to contextualise their current study by fitting it into already existing ones. It also helps avoid duplication of studies that have already been conducted in the field. The value of any new study is gauged by the relevance of the new information and knowledge that it avails in that particular field. A duplicated study does not ad any new knowledge, for it merely repeats what has been said and done before. Its relevance, as a result, is watered down.
The only way that the researcher can add new knowledge to the field is by identifying the gaps that exist in the already existing information and seeking to fill these gaps. Literature review is the best way for identifying these knowledge lacunas, and identifying the ones that the researcher can competently make an effort to bridge.
In this chapter, the literature that exists in the field of end of life care will be reviewed. The researcher will pay particular attention to literature covering individual preferences for end of life care, for individuals with varying cultural and ethnical backgrounds. This will be especially in developed nations, Canada and Hong Kong taking precedence where possible.
End of Life Care in the United Kingdom: A Case Study of England
Before embarking on a comprehensive literature review of end of life care for individuals in Canada and Hong Kong, it is paramount to give a background of this practice in other developed nations. This will provide the study that will follow with a context. The reader will be able to compare the status of end of life care in Canada and Hong Kong with other developed nations.
In a report titled End of Life Care, National Audit Office Staff lays the case for the extent and quality of end of life care services in Great Britain (National Audit Office 2009: 74). Part Two of the report looks at the extent and quality of these services in England. The findings are drawn from a battery of sources; among them a survey of care homes by the Audit Office, NHS data and information from other independent hospices. The report is of the view that preferred place of death for terminally ill patients differs, depending, to a larger extent, on the age of the patient.
In Britain, almost half a million individuals die within any given year, majority of them in their seventies (Department of Health 2008: 10). This is an indicator of the fact that majority of these deaths are of people who would have required end of life care due to complications arising from their advanced ages.
Majority of people who die in hospices are aged between forty five and sixty four years, according to National Audit Office (2009). For deaths occurring in care homes, majority of the people are above eighty five years. This is an indication of the varying preference for the place of end of life care and place of death. Location of death and that of end of life care also do vary, in addition to the age of the individual, with the nature of ailments suffered from (Seymour, Payne, Chapman and Holloway (2009: 2887). Cancer patients, for example, are more likely to spend their last days of their life, and subsequently die, in a hospice. Or those afflicted by respiratory diseases and other conditions like heart disease, their place of death is more likely to be within a hospital (National Audit Office 2009: 83).
The report found that majority of the respondents-fifty six percent to seventy four percent-would like to die at home (National Audit Office 2009: 83). This means that they would like to have their end of life care provided in the home environment. They would rather die in a hospice than within a hospital. However, the number of deaths occurring in hospitals point to the fact that this wish is rarely carried out. In the year 2006, according to Munday, Dale and Murray (2007: 39), fifty eight percent of all deaths that were reported in England took place within a hospital. Morgan (2008: 27) puts this down to a shift in preferences as people approach their last days. For example, the number of patients suffering from cancer who had previously expressed desire to die at home seems to decline as they approach death (National Audit Office 2009: 28). In the particular study conducted by this office, the percentage of these patients declined from a high of ninety percent to forty percent. They shifted their preferences and wished to die within a hospice instead of in their homes. This may be explained by the desire of the patient to cease being a burden to their family members, or to access specialised support as their day of death neighs.
Many patients with terminal illnesses like heart and renal failure get admitted to hospitals in cases of emergencies, or when their symptoms are aggravated and the family members feel that they have to consult a physician. When they are thus admitted, majority of them take a preference to having the hospital as their place of end of life care (Brown 2008: 1), and they hardly go back to their homes. This is regardless of the fact that they may have expressed wishes hitherto to the effect that they should be cared for in their homes.
In England, the variation of place of death between individuals can partly be put down to the different progresses followed by different forms of terminal illnesses. A case in point is cancer. The path that the condition will progress through can be predicted fairly accurately by the care providers and the patient, together with the family members. As the patient approaches the advanced stage of the disease, their decline seems to accelerate. Contrast this with a condition such as dementia. The latter’s progress relatively gradual.
Other conditions assume a progress that is hard to predict. The National Audit Office (2009: 11) cites patients with chronic obstructive pulmonary disease. The individual is prone to sudden dips in their health status, necessitating emergency admissions and treatments. This is followed by periods of relative stability. The alternation of these patterns is hard to map for the physician, for there is no apparent order of progress. Other conditions like motor neurone disease (MND) are even more complicated and difficult to predict their progress pattern. The latter can assume a rapid progress from diagnosis through to mortality.
The predictability of the progress of the disease or lack of it thereof, is a very important determinant when it comes to introduction of end of life care. In conditions, like cancer, where patterns are fairly predictable, it is relatively easier to map the phases of the disease and determine at which point to introduce the patient to end of life care (Rocker, Cook & Shemie 2006: 498). This is perhaps the reason why majority of cancer patients die in a hospice environment. This is not the case when it comes to less predictable conditions. It is hard for the care giver to map the progress o the condition. As such, the point where end of life care should be used as an intervention is hard to determine. This means that a great number of these patients die within hospitals, after been admitted for emergency treatment.
The Department of Health, under which the docket of end of life care falls, has identified several factors that should determine the quality of this service. The patient, according to this department (2008: 11) should be treated as a human being, and respect, together with dignity, should be the hallmarks of the care. Pain and other symptoms, both reported by the patient and discerned by the care provider, should be controlled to make their last phase of life as comfortable as possible. For their psychological well being, it is recommended that the individuals spend their last days in familiar surroundings (Stajcluhar, Martin, Barwich and Fyles 2008: 92). This means that family members, close friends and other social associates should be in close proximity with the individual.
Many complaints have been filed with the Health Care Commission concerning end of life care. In a report titled Spotlight on Complaints published in April 2008, this commission addressed a total of fifty complaints filed with it regarding end of life care in the country. The reported is quoted in National Office Audit (2009: 20), and was of the view that majority of the complainants felt that their care givers treated them as less humans. Poor support for basic comfort, privacy both for the patient and their family, cultural, spiritual and psychological negligence were some of the complaints that were lodged. The report explains this by saying that it emanates from a break down in communication channels between the patient and the care giver. When this happens, the patient is unable to let the care giver know about their preferences, or when they are able to express the preferences, the care giver more or less disregards them.
End of Life Care for Ethnic Minority Groups in Britain
Death and dying, according to Siriwardena and Clark (2007: 7), has the potency to train our focus on crucial ethical and medical issues pertaining to all patients. This is regardless of their cultural and ethnical backgrounds.
However, the issues are amplified when it comes to minority groups in the United Kingdom. This is especially so for ethnic minority groups and their families. These are for example Indians, blacks and such other groups. These groups are likely to encounter barriers unique emanating from their culture and belief systems; religious beliefs, health beliefs among others (Siriwardena and Clark 2007: 6). Living in a society with relatively different belief systems from theirs, their access to health services is compromised. A case in point is access to end of life care for their elders. Having belief systems that are deeply entrenched than the younger generation, this group of people face barriers as far as access of services is concerned. This is because the services available in the community have been tailored or and shaped by the dominant ethnic group.
Citing studies conducted in the United States of America and the United Kingdom, Siriwardena and Clark argue that patients from ethnic minority groups have diminished access to a wide range of care, for example palliative care (2007: 5). Access to appropriate pain and symptom relief services and opportunity to die at home or in a hospice in accordance with their wishes has resulted in equally diminished symptom control. The satisfaction of both the patient and their families has also been reduced.
Several explanations have been provided as to this observation. It is important to note that this is a complicated phenomenon, and no one explanation can suffice to account for it. This is given the fact that the experiences and backgrounds of the patients differ greatly, and it is not possible to explain them all in an all encompassing philosophy.
Low interest in hospice care among these groups has been cited as one of the reason why they have low access to palliative and end of life care (Siriwardena and Clark 2007: 6). Majority of the patients prefer to spend their last days in the company of family members, and they have a suspicion for care givers. Language and communication barriers have also been cited for this failure to access end of life care.
The lack of access to and slow uptake of end of life care services by minority groups in the United Kingdom is not a new phenomenon. Morgan (2008) argues that this pattern, especially among the black minorities, was discerned more than a decade ago. Despite this fact, change to accommodate this group has been nothing short of slow. The development of knowledge base to inform the development of a culturally diverse end of life care service has been slow, as Goodman (2007) argues in her article during the 2007 National Knowledge Week. In other words, research and other efforts aimed at coming up with a strategy to make the available end of life care compatible with the diverse cultural background of Britons has been largely ignored.
Creation of awareness among the members of these groups as to the availability, importance and significance of these services has also been ignored. According to Munday et al (2007: 45), doctors and health care professionals rarely make it known to the patient that they have an option to be enrolled in end of life care program, and as such, the patients rarely feel the need for the service.
Goodman (2007: 1) proposes a solution for this phenomenon. The solution proposed is simple; the health care professionals should start doing what they have not being before. Studies and research into the experiences of these groups should be conducted, and the findings integrated into the provision and development of end of life care services. Professionals should desist from adopting a “one size fit all” attitude when it comes to delivery of these services. Rather, they should be aware of the fact that individual cases should be treated as such; individual and unique.
End of Life Care in the United Kingdom: Analysis of Liverpool Care Pathway
Efforts have been made in this country to improve the quality of end of life care to all people, regardless of their status, cultural or ethnic backgrounds. Some of the measures, like the strategic plan adopted by the Department of Health, have been hailed as steps in the right direction. However, others have not been regarded as highly. An example is Liverpool Care Pathway.
The latter is a palliative regime, according to Smith (2009) that has been embraced by hospices, hospitals and nursing homes throughout the United Kingdom. Under this regime, end off life patients are sedated, starved and dehydrated despite the fact that their symptoms and conditions could have been managed through an alternative strategy (Smith 2009: 1). Critics, among them relatives, patients and doctors, have argued that terminal ill patients are being sentenced to premature death by being put under this National Health Service initiative, apparently in an effort to end their agony and suffering, leading to peaceful deaths (Devlin 2009). The patient is starved, sedated and as earlier stated, dehydrated until they pass on. This, Devlin argues, “masks the signs that their condition is improving” (2009, 1).
Opposition to this care program has been so fierce to the extent that families and patients are on high alert to detect when the doctors are likely to revert to it. Irvine and Devlin (2009) give a case of a woman who was opposing to her father, a stroke victim, being put under the program. Rosemary Munkenbeck, according to Irvine and Devlin (2009) felt that the doctors were going against her father’s wish by proposing to put him under the program. According to her, “[the old man] had expressed a wish to live until he was 100” (Irvine and Devlin 2009: 1). But he is now saying he wants to die after been deprived of water and fluid for a period of five days.
But this point is vehemently denied by the National End of Life Care Program officials, who contend that the rationale behind the move is to “drive up sustained quality [of life] of the dying in their last hours and days of life” (Gunaratnam 2006: 35). In a nutshell, the program ensures that the dying are not “overmedicalised” unnecessarily, prolonging their life and suffering. The Marie Curie Palliative Care Institute, a charitable organisation that was the brain behind the program, argues that those family members who oppose this development are “just selfish, wishing to cling to their dying patient regardless of the pain that they are inflicting to them” (The Marie Curie Palliative Care Institute 2009).
The Marie Curie Palliative Care Institute defines Liverpool Care Pathway as an integrated care pathway which takes into consideration the comfort of the patient in their last days and hours of life (Marie Curie Palliative Care Institute 2009: 1). From this pedestal, the proponents of this program argue that it is very unfair to deny the dying patients the right to die in dignity and peace. They view the arguments against the program as short sighted, emotive and irrational. However, this is to be expected given the fact that family members will find it hard to let go of their loved ones when they think that there is still a chance of having them back. They believe that he patient’s body should be given a chance, through medication and other forms of treatment, to try and recover (Gunaratnam 2006: 45).
End of Life Care in Canada
According to Standing Senate Committee on Social Affairs, Science and Technology (2009: 5), every Canadian has the right to access health care especially when they are most vulnerable. This right is enshrined in the country’s bill of rights, which came into force in the 1960’s. The Canadian Bill of Rights is the core around which the Canadian society is made. In turn, the bill of right is founded “upon the dignity and worth of the human person” (Standing Senate Committee on Social Affairs, Science and Technology [herein referred to as Standing Committee] 2000: 3). This dignity and worth is not diminished when the individual gets terminally ill. To the contrary, it calls for the provision of “excellent end of life care” at such a time, when the person is deemed to be most vulnerable (Standing Committee 2000: 3).
From the above discourse, it is obvious that ideally, every Canadian should die in relative comfort, absent of physical, emotional, social and other forms of pain. This can only be achieved if the average citizen is able to access quality end of life care form the country’s health care system.
However, this stance is easily made on paper than in practice. In a research titled What matters most in end of life care: Perceptions of seriously ill patients and their family members, scholars Heyland, Dodek, Rocker, Groll, Gafni, Pichora, Shortt, Tranmer, Lazar, Kutsogiannis and Lam (2006: 780) contend that this is far from the reality on the ground. They hold that efforts to improve end of life care within Canadian health care system are marred by “our nascent understanding of what quality care means to patients and their families” (2006, 1). This means that the meaning attached to quality end of life care service by, for example, the Senate Standing Committee may differ considerably from the expectations or meanings attached to the same by the consumer. This is despite the fact that the committee may have made the definition out of good faith, with supposedly the interests of the patients and their families at the core of it.
When this conflict in definitions and conceptions occur, what follows is lack of satisfaction on the part of the patient and their family. The Standing Committee sets out policies in accordance with what they believe to be the expected needs of the patients, which is more often than not erroneous. When these programs are availed to the patient, they are not satisfied. This can be compared to the earlier mentioned Liverpool Care Pathway initiative in England, where the goals and expectations of the policy makers does not mirror those of the end consumer.
But all initiatives are not to be regarded with a pessimistic lens in Canada. Some, it is true, are failures, but others can only be described as success stories. Seow, King and Vaitonis conducted a study in 2008 to determine the impact of a government’s initiative as far as quality of end of life care service is concerned. The study, titled The Impact of Ontario’s End of Life Care Strategy on End of Life Care in the Community was published in the Healthcare Quarterly, and sought to compare the experiences of patients and families in a longitudinal fashion. The aim was to study the effects of the Ontario’s ministry of health Long Term Care’s End of Life Care Strategy on the quality of end of life care services availed to patients by home care providers in the province of Ontario.
After comparing the context of the service before and after the implementation of the strategy, Seow, King and Vaitonis (2008: 67) were of the view that the number of consumers for this service have swelled by an impressive 3,537 within a year. The number of hours that the patients received visits from care givers increased by an average of thirty five percent (Seow et al 2008: 66). Also, patients and families felt that they had being supported professionally since the strategy was introduced, and were, to the larger extent, satisfied by the services. This is despite the fact that the implementation of the strategy was marred by several challenges, among them lack of base data and investment in research (Seow et al 2008: 66).
Provision of end of life care services in Canada, and the determination of its quality therein, is faced, as earlier stated, by a number of challenges. Jones (2008: 1) quotes Harvey Chochinov, one of the witnesses testifying before the Standing Senate Committee mentioned earlier, as saying that the provision is hampered by the lack of what he calls “a vocal constituency” (Standing Committee 2000: 3). The witness is of the view that “the dead are no longer here to speak [for themselves], the dying often can not speak, and the bereaved are often too overcome by their loss to speak” (Jones 2008: 56, Standing Committee 2000: 3).
This means that unlike other vulnerable groups that are able to speak out and fight for their rights, the dying, or those in their last days of life, is unable to do so. The black minority can organise themselves politically and fight for their rights, the sexual minorities can do the same, but the person who is in pain can not be expected to do the same. This is made worse by the fact that in most cases, the patients never recover to tell of their tribulations. As such, it becomes really hard for their rights to be implemented, given that there is lack of a mouth piece. Their family members, who would have been expected to fight for their rights, are more often than not emotional and irrational, and can only focus on the imminent loss of a loved one.
Individual Preferences for End of Life Care in Canada
Like in other societies, individual preferences or end of life care in Canada do vary from one individual to the other, depending on their unique experiences. Bowman (2000) strongly feels that attitudes and opinions regarding end of life care are disproportionately shaped by cultural perspectives of the individuals. In Canada, this is significant given that there are many cultures co-existing in this society. Weerasinghe, Maddalena and Kanth, in their study titled End of Life Care for South Asian Immigrants in Halifax, Nova Scotia are of the view that the Canadian society has become increasingly diverse in terms of culture, ethnic, linguistic and religious orientation (Weerasinghe et al 2008). They quote Statistics Canada, which in 2003 released figures indicating that the number of immigrants in Canada is rising steadily, with 21.6 percent of them drawn from South Asia (2008: 9).
In this background, one should not be surprised to learn that individual preferences for end of life care vary accordingly, and the “one size fit all” mantra can no longer be applied. All of these of these people have different attitudes towards life and health, death and such matters in particular. They are of different religious orientations, and as Jones (2008) aptly puts it, “end of life decision making is often couched in religious context [of the patient]” (23). When these religious (and other) contexts are as diverse as they are in Canada, decisions emanating from patients are also likely to be as diverse.
Culture, Ethnicity and End of Life Care in Canada
In the preceding section, an overall view on Canadian end of life care system, with deliberate bias towards culture, ethnicity and individual preference was presented. The researcher in this section wishes to delve under the surface and look into culture, ethnicity and end of life care in Canada. But before embarking on this task, it is important to look at some of the definitions that scholars give to culture an ethnicity.
Adler (1995: 3140) uses the definition given by American Heritage Dictionary regarding culture. The latter views culture as the totality of socially transmitted and purveyed behavioural patterns, arts, belief systems, institutions and other products of man’s work and thought in the society (Adler 1995: 3140). In other words, those behaviours that are learned by people as a result of their being members of a society, and are passed from one generation to the other, those are part of culture. In this respect, it is obvious that these vary from one community and from one period to the other. This is because of the different experiences and values shared by the different communities and societies at different times.
Ethnicity, on the other hand, is conceptualised as grouping people into large clusters in account of their shared racial, national, tribal, religious, linguistic, cultural or such other forms of background (Adler 1995: 3140). As such, people sharing the same language and religious orientation will be grouped into one ethnic class.
Bowman (2000: 18) believes that culture is a strong determinant of the value and definitions that people attach to their lives. They are, according to him, “maps of meaning via which people make sense of the world and things around them” (Bowman 2008: 3). In end of life care context, these maps are very important. When the patient and the care giver are of different cultural extractions, this in extension means that they adopt differing maps when it comes to health care. This can be a considerable impediment to the provision of quality care, for effective communication between the two parties is curtailed.
Views, opinions and attitudes towards nature and meaning of illness and subsequent demise are shaped by the culture of the individual. This in extension means that end of life decisions are then made depending on the cultural background of the patient and their family (Kanth 2006: 8). For example, the members of the family are the ones who mainly make decisions as to how bad news regarding the health of the patient should be communicated to them. In some cultures, it is regarded as insensitivity to furnish the patient with a commentary about the deterioration of their health. In other cultures, it is insensitivity and lack o concern for the patient when news is with held from them.
Canada, according to Bowman and Singer (2001: 64), is a land of considerable cultural variation. This is given the fact that the aboriginals, who have a distinct cultural orientation, co-exist with other groups such as Indians, whites, Chinese and Africans. In this context, the value of adopting a likewise multi cultural approach to health care can not be down played. However, Kosterich (2010: 1) bemoans that this is not always the case. Canadian health care system rarely reflects this diversity. The care providers seem to adopt the erroneous mantra of one size fits all, providing the same health care to all consumers regardless o their cultural background.
In a 2006 study titled Cultural Competence in End of Life Care for Asian Indian Immigrants, Kanth Furhana contends that Canadian Charter of Rights and Freedoms acknowledges multiculturalism in the country (Kanth 2006: 9). The individuals are free to practice their cultural beliefs provided that they do not encroach on the freedoms of others, and no one is expected to fit into a cast of predetermined cultural patterns. This, Kanth argues, extends to health care, and subsequently to end of life care in the country. An individual is free to make a preference regarding end of life care depending on their cultural and ethnic orientation. It is illegal, for example, to force an Indian Canadian who believes that life prolonging medication should not be administered to have the same medication.
Wilson, Birch, Sheps, Thomas, Justice and MacLeod hold that approximately 220,000 Canadians die every year (2008: 1). Most of these deaths emanate from old age and progressive ill health, for example cancer and chronic pulmonary obstruction. These, like the majority of the half a million deaths in Britain, would have required end of life care, but only a small proportion gets it. Hospice and palliative care, some of the most important end of life care services, are not distributed uniformly across Canada, and this tends to favour predominant cultural groups than the minorities (Runde 2007: 8).
Heyland, Rocker and Pichora (2006: 620) found that Canadians of African extraction preferred to have their life prolonged by medication than did their white counterparts. They are also less likely to talk about death, believing that the talk may “attract the catastrophe” (Kosterich 2010: 1). This is given their superstitious background. This means that they rarely make end of life decisions, believing that making such decisions is “calling” their own demise. The whites, on the other hand, discussed their options and other end of life plans with their physicians, and seem to prefer less life prolonging medication. This is given that they are less superstitious than their black counterparts.
This being the case, health care providers, given their scientific orientation and disdain of anything that can not be proved scientifically, find it hard to accommodate the reservations of the black Canadians, and other similar groups, in their plans. As such, they proceed with plans and programs that have worked with the white majority, giving medicine and other interventions to these patients with little or no regard to their cultural and religious orientation. This means that end of life practices in Canada fails to meet the needs-psychological, cultural and such-of some patients (Davidson 2010 p1: Turner 2002 p63).
Factors Affecting Provision of End of Life Care in Developed Nations
Some factors have been found to impact the provision and resultant quality of end of life care in developed countries. These factors are the ones that in turn impact on individual preferences for end of life services in these countries. This is because, as they impact on the care provided, they tend to shape the design and delivery models through which it is availed to the consumers. The mode of delivery, in a larger extent, will then determine the preferences hat the patient will make regarding the services. This completes the circle of end of life care provision.
For example, legal statutes (a factor) in most countries, Canada and Hong Kong included, dictate that every person has the right to access these services. Not only does the person has the right to access the services, but they also hold the right to access services that respects and puts into consideration their cultural and religious orientation. When this is done, people from different cultures will tend to prefer these services, than when their interests were not put into consideration.
Legal and Ethical Issues
Ethical problems are the major blind spots when it comes to provision of end of life care services in most countries. This is brought in part due to the conflicting positions taken by different moral principles, values, laws and belief systems in a society (Runde 2007: 21).
In her study End of Life Decision Making, Mary Runde (2007) believes that most of these ethical issues come to fore during the decision making stage for end of life care (12). This is when the values and beliefs of the doctor contradict those of the patient and their family, making it impossible for consent to be obtained from the patient willingly.
Heyland et al (2006: 780) puts this conflict to lack of communication between the patient and the care providers. The latter fails to put it across to the former the importance of using some of the services, while at the same time ignoring the suggestions made by the patient. The patient and their families, on the other hand, fail to communicate to the care giver the justifications of their preferences, or in extreme cases, even fail to communicate these preferences.
If communication fails between the two parties, the quality and access of end of life care will be negatively affected. To avert this, Rocker (2003: 83) proposes a systems approach to be adopted by all parties concerned. Decisions should be made in collaboration with the patient, the care giver, family members and other interested parties such as the patient’s legal representative. In such a setting, reservations will be made and acknowledged where necessary, and changes made as called for.
Confidentiality and Privacy
Confidentiality and privacy can also be regarded as facets of ethical and legal factors in end of life care. Privacy is one o the basic human rights that is provided for in the constitution of Canada and other developed nations. Runde (2007: 6) argues that one way of achieving privacy is to practice confidentiality. Under the Personal Health Information Protection of Privacy Act (PHIPPA) which came into force in Canada in the year 2004, the care giver is expected to maintain the privacy of the patient’s privileged information as they provide the end of care service (Runde 2007: 6).
Take a case of a patient suffering from HIV/AIDS. This is one of the most stigmatised conditions even in our so called civilised societies. In this backdrop, a patient in the terminal stages of the disease may request the end of life care giver to with hold the nature of their illness from their immediate family members, or from the rest of the society. This automatically makes the condition a privileged piece of information. In efforts to meet the confidentiality need of the patient, the end of life care giver is put in a fix. They have the need to educate the family members as to the nature and dynamics of the condition, in an attempt to prepare them psychologically of what the future has in store for them as far as their loved one is concerned. But at the same time, they should take care not to disclose the nature of the illness, which the patient effectively made privileged by their wishes.
Capacity and Competence of the Patient in Decision Making
These two factors, Runde (2007: 8) contends, should not be ignored when considering individual preference for end of life care. Capacity is a direct reference to the end of life client’s mental acuity. It depends on the progress that the disease is making, such that at a certain stage, the mental acuity and competence of the individual is totally compromised. The patient is said to be incapacitated in this sense when the disease has progressed to the extent that their mental and physical conditions negatively affects their judgement (Heyland et al 2006: 780). When this happens, the patient is unable to make health care decisions, and as such have no way to make their preferences known, or to make end of life preferences for that matter.
It is up to the care provider to determine when the patient has been incapacitated. This is because decisions made by the patient when they are competent will be taken to be legally binding, and any action to the contrary will be deemed a criminal offence on the part of the care giver. Lack of capacity and competence means that he patient lacks the ability to give informed consent as far as end of life care is concerned. As such, the care giver will provide that they feel to be to the best interest to the patient, informed, not by the wishes of the patient, but their professional or personal convictions (Rocker 2003).
Beneficence and Nonmaleficence in End of Life Care Provision
Beneficence can be conceptualised as the aspect of doing well (Rocker 2003) while nonmaleficence can be defined as the aspect of “not inflicting harm intentionally” (Runde 2007: 6). These two factors are central to the provision of end of life care service in the developed countries. Care providers are morally and legally expected to be beneficence. But a problem may arise when beneficence and nonmaleficence are mutually exclusive, rather than mutually inclusive. This is when in the process of doing good, the care giver intentionally inflicts harm to the patient. This is what Runde (2007) refers to as “double effect concept” (3).
A case in point is the earlier illustrated Liverpool Care Pathway in England. It can be argued that the implementers of this program had the intention of doing good to the dying patients by ending their agony through death. However, critic will hold that the healthy care professionals, by putting terminally ill patients under this program, are intentionally inflicting harm on them. Assisted suicide and euthanasia, which can also be conceptualised as products of double effect concept, are common issues in Canada. The former (assisted suicide) is a criminal activity in this country. As such, the end of life care giver should assist the patient to commit suicide, even if this is the latter’s end of life care individual preference.
Do Not Resuscitate (DNR) Preference
There are instances when patients make it abundantly clear that they do not wish to be resuscitated should the need arise. This is their end of life preference and the care giver should adhere to it. These wishes are usually made in advance, when the patient still has legal capacity and competence to make them. If for example a patient with a heart condition suffers stroke and the doctors think that resuscitation is the only option, they have no option but to let them die if the patient had earlier expressed wishes to the contrary (Runde 2007: 8).
A point to note for end of life care givers is that even though the patient may have expressed do not resuscitate desire, this should not, under any circumstances, compromise the quality of end of care service availed to them (Runde 2007: 9). The care giver should make the patient as comfortable as possible even when they are not making efforts to resuscitate them.
Bowman (2000: 19) identifies different levels of resuscitation. The first one is limited resuscitation, where care givers can make efforts to resuscitate the patient. But, under this preference, if the initial attempts fail in resuscitation, the care giver should desist engaging in other invasive and extensive measures such as life support systems. Simple procedures like mouth to mouth resuscitation are permissible under this option. But there is also the no resuscitation choice, whereby the patient explicitly states that non resuscitation efforts whatsoever should be made to resuscitate them.
In cases where the patient is deemed to be incompetent, do not resuscitate decisions are left to the substitute decision maker in conjunction with the end of life care provider. They make the decision that they deem to be the best for the patient under the circumstances.
Individual End of Life Care Preferences and Culture in Hong Kong
Canada can be said to be a multi cultural society, and hence unique in her own way. On the other hand, Hong Kong is a culturally rich society, with people who are deeply attached to their cultural roots regardless of their status in the society. This means that whereas Canada is recognised for her diversity, Hong Kong is recognised for the importance that people attach to their cultural backgrounds. This is in line with the Asian continent’s character, being one of the places in the world where people attach a lot of importance in their culture. This is despite the fact that it is a civilised society.
Payne, Seymour, Chapman and Holloway conducted a study in 2008 where they sought to discern the views of older members of the Chinese community in the United Kingdom regarding food. This is especially so for older patients suffering from cancer. It is known that the Asian community attaches a lot of importance on food and food products, and this study sought to find out he interplay between this and supportive cancer care. Though this study was conducted in the United Kingdom on immigrants living away from their homeland, the results can be generalised for the whole of Chinese community, even those living in Hong Kong. This is because the experiences shard by these two groups, albeit different, are translated using the same cultural orientation map. The two communities share the same culture, despite the fact that they are living in different locations (Carrese and Rhodes 1995: 829).
As people approach end of life, social, cultural and therapeutic role played by food in Chinese community increases (Payne et al 2008). The role that food plays in their health is amplified, as they make efforts to regain health. This is because, according to Chan and Samantha (2006: 2159), Chinese view food as therapeutic but at the same time risky. This means that the right food can aid the recovery of the person’s health while the wrong type of food can make the health status deteriorate. As such, food is viewed as been supportive and comforting to the patient (Heather 2006: 8).
In this light, food in Hong Kong and other Asian cultures plays a very central role in determining the individual preferences or end of life care. The study cited above found that Chinese patients are concerned as to the lack of culturally acceptable and appropriate food in hospital settings (Payne et al 2008). When the patient and their family believes that the right food will not be availed o the patient in the hospital setting, they would opt for home based end of life care as opposed to one based within a hospital environment (Gullo, Lumb, Besso and Williams 2009: 214).
This makes it very important for hospitals when they are trying to accommodate the preferences of end of life care clients. Surbone (2008: 54) concurs with this view in a 2007 study when they say that cultural competence is very central to provision of end of life care within an oncology setting. The care givers need to have the right professional and clinical knowledge, coupled with a positive attitude towards the culture of their patients (Kagawa-Singer and Blackhall 2008: 2998). This being the case, provision of culturally acceptable and appropriate food to the patient becomes very important (McCarthy 2009).
According to Hong Kong Society of Palliative Medicine (2010: 1), people with advanced incurable illnesses (read end of life conditions) have a right to quality palliative care. This statement can be taken as summing up the attitude of the Hong Kong community when it comes to end of life care provision. It is believed that every individual has the right to enjoy these services delivered within a culturally acceptable setting. This is because dying, being a natural phenomenon, should not be delayed, hastened or interfered with in any way (Hong Kong Society of Palliative Medicine 2010: 1). This means that any effort that is undertaken by a member of the Hong Kong community regarding end of life is primarily aimed at improving the life of the individual at the moment, upholding their dignity. It is not aimed at interfering with the dying process; rather, it endeavours to make the sick experience death in peace and honour. This is by relieving their pain and discomfort (Lickiss 2003: 15).
Quality of End of Life Care in Hong Kong
Given the fact that it is a culturally rich society, scholars have sought to identify how people living in Hong Kong regard end of life care, and what they consider to be quality end of life care. This is because they exist in a different culture from the rest of the global community, and as such, their life experiences, values and expectations are also expected to be different.
Chan and Samantha, nursing students in the Hong Kong Polytechnic University, sought to find out quality of life concerns and individual end of life preferences of older people in Hong Kong (Chan and Samantha 2006: 2160). This they did by studying older people living in long term care facilities in Hong Kong. This study found that majority of the older people was not very clear about their end of life care preferences (Chan and Samantha 2006: 2160). They opted for the physicians to be their decision makers.
However, as much as they were unable to define their end of life care preferences, they were very clear on what they thought to be aspects of good end of life care. Existential distress, value of life and food were their major concerns, expressing fear that their end of life care programs may no cater for these needs (Chan and Samantha 2006: 2160). The findings collaborated with those of Payne et al as far as food is concerned (Payne et al 2008). A lot of importance is attached to the quality of food that is availed the patients, or end of life care consumers.
Despite the fact that the subjects in Chan and Samantha’s study had not clearly set out their end of life plans, it is abundantly obvious that they have certain expectations and standards as to the service. The results of the study make it clear on policy makers’ minds the pattern that their individual end of life preferences will assume I they are given the chance to do so. They will prefer care that will nourish them with the right food, relieve their existential distress and uphold their value of life among a battery of other preferences.
Tse, Chan, Lam, Leu and Lam (2007: 467) are of the view that palliative care in Hong Kong has improved the quality of end of life cancer care for patients in the community (The Impact of Palliative Care on Cancer Deaths in Hong Kong: A Retrospective Study of 494 Deaths, 2007). This study found that those patients who were enrolled in palliative care programs were less likely to be admitted to emergency units in hospitals, and when admitted, for a short time. Majority of them also died in their homes or in palliative care units (Tse et al 2007: 468). This is as opposed to their counterparts who did not attend palliative care programs. The latter tended to have frequent and longer admissions to emergency units, and majority of them died in the hospital.
What this means is that just like in other societies, palliative care, and in extension end of life care programs, are beneficial to members of the Hong Kong community. This is in spite of the fact that they are affected greatly by the culture of this community. But the major point is that palliative and end of life care is beneficial if it could be adapted to the culture of the consumer (Deshpande, Reid and Rao 2004: 135).
The preceding chapter covered preliminary review of relevant literature. However, this study is about critical review of selected literature. This chapter is going to highlight the steps that the researcher is going to follow in selecting the research papers and articles for critical literature review later on in the study. Among other things, the researcher will explain why literature review is the appropriate methodology for this study, given that there is a myriad of other methodologies available, which could have been employed. The importance of the inclusion and exclusion criteria that will be later employed in selecting the literature will also be provided. The importance of search terms that will be used in finding the literature and the selection of databases for the same will also be justified.
Other issues surrounding critical literature review as a methodology and which the researcher deems to be relevant will also be analysed. This includes critiquing other people’s work and the ethical considerations involved among other issues.
Literature Review: An Overview
Anson and Schwegler (2000: 235) conceptualise literature review as that process of discussing published works and information within a particular discipline. There are several criteria followed when performing a literature review; the person may opt to review literature within a field in general and literature within the field in a given time frame (Cooper 1988: 110).
The major goal of literature review, according to Kabilan (2003: 38), is to summarise, synthesise and analyse the arguments that have been propounded by other scholars and researchers in the field. This should be differentiated from an academic research paper. The latter’s major goal is to support the arguments that are made by the writer, while that of literature review is to present what others have done in the field.
It is important to note that no new knowledge is added to a field by the use of a literature review. Rather, the researcher merely organises and analyses knowledge that is already in existence. This being the case, the researcher should make efforts to describe and analyse the existing knowledge, identifying lacunas therein in the process (Green, Johnson and Adams 2006: 112). This is in order to make it clear how the current research is related to others that have been previously conducted in the field.
Controversies, inconsistencies and inadequacies are some of the aspects that the researcher should be aiming at revealing when conducting a literature review (Anson and Schwegler 2000: 235).
Critical Literature Review
Literature review has already been defined. But what exactly is a critical literature review?
In order for a literature review to qualify as critical, it must move away from mere description of the sources consulted by the researcher (Kabilan 2003: 38). To be critical, several attributes have to be incorporated in the review. The breadth and depth of the literature in relation to the topic under consideration should be taken into account. For example, how wide is the range of field addressed by the literature? How detailed is the analysis of the subject matter? The relevance of each article to the topic under study should also be considered.
Woolliams, Williams, Butcher and Pye view being critical as “careful selection of sources, thoughtful analysis of the same, being questioning, probing and failing to take things at face value” (2009: 3). This means that the researcher does not act merely as a sponge to absorb the ideas and propositions made by the author. Rather, they should always view the ideas with a measure of doubt, trying to find possible limitations and factual errors.
From the above discourse, it is obvious that critical literature review is not merely summation of the presented ideas and facts. Critical evaluation of information is called for. The researcher should look at the articles not superficially, rather like a scientist examining a specimen under the glare of a microscope. Comparison should be made with other points of view that either support or oppose the stand made by the author of the article (Kabilan 2003: 38). This in effect will establish how strong the article is in relation to critics or proponents.
There are a number of criteria that can be employed in determining the relevance or quality of any piece of work in critical literature review. The first thing that the reviewer should look for is the author’s background (Woolliams et al 2009). Authors affiliated to reputable institutions, are highly qualified in their fields and have written other relevant articles are likely to produce quality study findings. This is as opposed to unknown authors who are inexperienced and unproven. Date of publication is also critical. Recent articles are likely to be more up to date than antiquated ones, especially in highly dynamic fields like information tedchnology. When an author is embarking on ay writing or research mission, they usually have a clearly defined target audience at the back of their minds. It is the audience that will determine the language and techniques that will be used (Taylor 2009: 469). Articles aimed at general public, for example new papers, tend to use elementary language and writing techniques, as opposed to those aimed at specialised groups. The latter are the best when conducting a critical literature review for a study, given their advanced level of presentation and deep analysis of the issue at hand (Cooper 1988: 125).
The researcher should also be on the look out for the content of the article. Rationality and facts supported by evidence are some of the hallmarks for a reputable material for literature review. This is as opposed to information that is biased and looks like n effort at propaganda on the part of the author (Kabilan 2003: 38).
Critical Literature Review: Justifications
There are several reasons that informed the researcher’s choice of critical literature review as a methodology for this research. The researcher aimed to appraise the existing knowledge in this field, and the best way to do that was reviewing the literature available. This is because all the findings of studies that are conducted within any given field are likely to be published in journals and other publications. It is through accessing these journals and publications that a literature reviewer can familiarise themselves with the same.
This been an advanced research to an academic paper, the researcher needed to move past mere description of the literature, and critical review is the best way to move beyond mere description (Hart 2004: 212). Being an advanced learner, the researcher needed to prove that they can get critical, and are not likely to take presented data and ideas at face value, without questioning their source and credibility.
The study addressed individual end of life care preferences in two different countries, in two different continents. It would have been hard for the researcher to conduct primary research on these two countries, given that they are from a different continent from the field. The only option left for the researcher was to organise findings of studies already conducted in the target countries and beyond. This is given that they were limited in terms of resources, both financially and time allocated for the research. The researcher had a moderate budget, and the time frame was short to allow a comprehensive and insightful primary study to be conducted.
Importance of Being Methodical when Searching Literature for the Study
It is important for the researcher to assume a methodical approach in looking for articles and journals to critique. This is given that in any academic field, there is a probably a wide range of literature covering findings of past studies and the opinions of scholars and experts within the field. It is unlikely that all of these articles and journals are relevant to the topic that the researcher is studying (Kabilan 2003: 38). This being the case, it is important for the researcher to be critical even in the selection of the literature, and select only that which is relevant to their study, leaving out the rest (Woolliams 2009: 5). This has to be done methodically, because even the relevant materials have to be analysed to select those that are most important or useful to the study. As such, inclusion and exclusion criteria to be followed must be clearly outlined.
As earlier indicated, the researcher is likely to come across a number of studies and articles in the process of searching. Inclusion criteria is used to determine which articles, among the many found, will be considered for critical review (Danson 2007: 1). Some of the standards set, and which vary from one study to the other, are as stated below:
Language: The researcher selects the articles that are published in the language that they can understand, or which is relevant to the study they are conducting (Kabilan 2003: 38). The language o the target audience is also to be put into consideration. For example, an English researcher can not pick articles that are published in mandarin if they can not understand the language. Likewise, they can not choose an article written in French just because they are proficient in the foreign language. Their target audience may not be as versed in French.
Date of Publication: Usually, a time limit is set if the researcher feels that recent developments will be instrumental in determining the quality of the research (Randolph 2009: 5). Recent articles are likely to include latest findings in the field. If the literature review is on historical matters, the researcher may opt to go back in time and find articles that were published at the time.
Type of Research or Article: Is the researcher interested in peer reviewed studies only? Is the researcher interested in researches as opposed to articles detailing other literature reviews? These are some of the questions that the researcher asks themselves as they are deciding which articles to include and exclude in their work (Scottish Intercollegiate Guidelines Network 2009: 1). Those studies that do not meet the set criteria are excluded, while those that meet the criteria are included.
Ethical Considerations: It is also important for the researcher to put into consideration ethical measures and considerations that were employed when conducting the research that resulted in the article to be analysed (Danson 2007: 1). Usually, for the sake of credibility and professionalism, only those studies that were conducted ethically are included. Inclusion of findings of research that was conducted in conditions violating professional and moral code of ethics will have undesirable results. The current study will itself considered to be unethical by the mere fact that it is promoting unethical practices, and findings will be diminished in credibility.
Depth and Breadth of the Article: How analytical is the study? How far does it integrate the findings of other studies? The depth and breadth of the study will determine the relevance of the article to the current research (Danson 2007: 1). Articles emanating from studies that are deeper and wide in scope will usually be included, as they are more relevant to the topic.
Author’s Background: How qualified is the author? How many similar studies have they published before? What is their status in their particular field? Most critical literature reviews will incorporate articles that are written by reputable professionals (Scottish Intercollegiate Guidelines Network 2009: 1). This is in order to increase the credibility and relevance of the current study.
Usually, the criteria for exclusion and inclusion are always the same. This is because once a particular article has been included in for review, exclusion as far as the article is concerned is nullified. However, an article that has not met the inclusion criteria is inevitably excluded. For example, if a particular study adopts the afore-mentioned inclusion criteria, any article that does not meet them will be excluded.
Exclusion and inclusion has to be conducted, as earlier indicated, methodically. If an article does not meet a particular set of criteria, it is not usually completely discarded. Rather, the researcher notes it down somewhere, so that it can be retrieved in the future should such a need arise (Randolph 2009: 5). It can be retrieved for reference, or the researcher may feel that it somehow reflects the value of the study, and hence decide to include it, albeit peripherally. As such, exclusion of an article can be an ephemeral phenomenon.
Usually, the selection and rejection of articles follows a predetermined flow process. Articles that meet the primary criteria will be abstracted for review (Danson 2007: 1). Those that do not meet screening criteria are classified into two; those that will be excluded form further review, and those that will be abstracted, despite the fact that they were not successful in the screening stage (Danson 2007: 1).
Choosing Search Terms
After findings are published in articles for journals and other publications, they are usually filed away for future reference. It is up to the researcher to retrieve these articles from the archives if they are interested in reviewing them. The archives may be electronic or libraries. To retrieve the articles, usually a combination of terms is entered into the system which will connect to the article and avail it to the researcher (Danson 2007: 1). These are what Randolph (2009: 6) refers to as search terms.
For example, a combination of two terms entered into a search engine like Google will result to a particular set of items. The researcher usually opts for a combination of terms that are relevant to their study or which are likely to be included in the particular article they are looking for (Randolph 2009: 6).
Selecting and Justifying Databases
As earlier indicated, articles are usually filed away in databases where they can be located for future reference. A certain database will organise articles according to their topics, meaning that articles from a certain field are likely to be found within a particular database. The database can be in a library or on the internet. It is up to the researcher to select the appropriate databases from where to locate their articles.
Critiquing Methods in Critical Literature Review
There are various methods that are followed when the researcher is critiquing the work of other people. Cooper (1988: 125) is of the view that the best way to adopt an effective method is to consider where, in his taxonomy of literature reviews, the proposed review falls. This author identifies some methods of critiquing literature:
This method, according to Randolph (2009: 6) and Cooper (1988: 127) concentrates on the focus that was made by the study. It addresses, among others, the outcome of the study, methods used, theories adopted and practices or applications of the research (Cooper 1988: 110).
Many reviewing methods adopt focus on the outcomes of the research when critiquing other studies (Randolph 2009: 3). For example, the researcher may ask themselves, how are the outcomes of this research relevant to my study? How are they relevant to the field?
This is the method whereby the researcher sets goals for the review (Randolph 2009: 4). For example, the researcher may opt to integrate and generalise the findings of the study they are reviewing with other findings across disciplines and fields. They may also set a goal to resolve controversies or debates within the field, and criticise the article from the perspective of how well it resolves the conflict.
Perspective Critiquing Method
At times, the researcher may have their own biases which they bring into the review. This being the case, they will try to critique other studies from the perspective of their beliefs and convictions (Randolph 2009: 4). For example, a researcher who is a pro-choice edict may criticise articles on abortion based on their belief that abortion should be legalised. From this background, they may be guided by questions such as, “does the findings support pro-choice view?”
Alternatively, the researcher may assume a neutral stance and present the perspective of the research. What were the findings? What is the perspective assumed by the author?
Analysing and Critiquing the Works of other People
In critical literature review, the researcher is called upon to analyse the findings of other people’s research and using them as their data (Danson 2007: 1). This includes reworking and reformatting the information, while at the same time taking precaution to ensure that the original source is acknowledged.
Randolph (2009) is of the view that the researcher should ensure that the reader is aware of whether they are reading directly from the primary source, or indirectly through the researcher’s understanding and interpretation of the source. This is what Randolph refers to as “taking control of the voice” (2009: 8). This can be achieved through the use of direct quotes, or paraphrasing the original idea and integrating it with the researcher’s perspective. The researcher should also be clear on whether to give prominence to the author of the article or to the information contained therein (Scottish Intercollegiate Guidelines Network 2009: 1). This will depend on the intentions of the researcher; are they interested in the credibility of the author or on the information that they are accessing? The whole review will proceed along the identified lines.
Ethical Implications of Literature Review as a Methodology
One may assume that since critical literature review methodology does not make use of primary data and a field research involving subjects is not conducted, ethical considerations are not central. This as far as one can get from the truth. There are ethical issues that revolve around using the research findings of other people.
Hart (2001: 287) opines that fairness and honest should be observed when presenting the data. For example, one should not interpret the data maliciously, giving it meanings that were not intended by the researcher. Being a critical review, the researcher may be tempted to skew the findings to fit their personal goals. Most importantly, the researcher should ensure that they acknowledge the source of the data, and desist from presenting the ideas of others as their own. This may result to plagiarism, which is the worst crime that a researcher can commit in the process of critical literature review.
It is also important for the researcher to ensure that the information that they are using was, itself, collected following ethical edicts in the field (Hart 2001: 287). For example, the researcher should desist from using information that was collected by studies that involved abuse of human rights and such other malpractices.
In this chapter, the researcher is going to state the exact steps that were followed in searching the articles, critically appraising them and thematically analyse them. The methods that were followed in the study will also be outlined. In chapter three, the researcher presented the importance of search words and databases in mining data. In this chapter, the key search words and terms that were used and the databases that were selected, together with the justification of the same. The inclusion and exclusion criteria, critique methods employed and their accompanying justifications will be provided.
Search Words and Databases
The study sought to analyse data from articles covering individual end of life preferences for individuals from different cultural and ethnic background. The countries to be studied were Canada and Hong Kong. The search terms selected reflected this requirement. The search terms that were used are presented in the Boolean table below:
Table 1: Boolean Search Table
|End of life care individual preferences||And||Canada||And||Culture and ethnic|
|End of life care individual preferences||And||Canada||And||Cultural influence|
|End of life care individual preferences||And||Hong Kong||And||Culture and ethnic|
|End of life individual preferences||And||Hong Kong||And||Cultural influence|
The terms were used because the researcher wanted to find articles covering the topic in the two countries.
The review was based on eleven articles. They were obtained using five search engines or databases. These were accessed from the university’s library.
Table 2: Search Engines
|Search Engine (Database)||No. of Articles|
|Total via search engines||9|
|Snow ball additions||2|
The search engines and data bases were selected for their relevancy to the topic being researched on. The snow ball addition was found referenced on one of the articles obtained from the search engines, and the author was of the view that it was relevant.
Inclusion and Exclusion Criteria
One of the criteria employed by the author was that of date of publication. Articles that were published from the year 2000 were the ones included. The researcher was of the view that recent articles will reflect developments in the field. Credibility of the author was also considered, with those articles published by reputable authors included. This was to increase the credibility of the study. The researcher also included articles that touched on the topic, meaning that articles that were not oriented towards end of life individual preferences were not included.
Critique Methods Used
The researcher used critique methods that were identified by Cooper (1988: 120). The articles were criticised from their focus and goal perspective. This is because the researcher was interested more on the findings of the studies and how they related to their topic. This is together with the goals that the studies had set for themselves, and how far they were able to attain those goals, in addition to how those goals augurs with the objectives of this study.
The researcher used thematic analysis in this study. This is because they were more interested on the themes that were covered by the articles identified, and as such, analysis of those themes was the best way to discern the relevancy of the article.
Composition of the Articles Obtained
The search for the articles resulted in fourteen of them in total. However, the researcher trimmed these down to eleven based on the criteria that was set. Four of the articles met the criteria for the screening stage but failed to meet that set for the review stage. They were studies that were conducted before the year 2000, and the researcher opined that they were antiquated. The following was the make up for the remaining ten papers:
Table 3: Composition of the Articles
|Type of Article||Number|
The eleven papers were chosen because they met the criteria that were set for inclusion and exclusion. They were relevant to the topic, updated, and authored by prominent professionals in their field.
Summarised Results of the Critiques
The following are summaries of the critiques that were conducted on the eleven papers. The summaries will cover the main findings of the papers and their quality.
End of Life Decision Making, Mary Runde, 2007
This is a discussion paper intended to be a self learning package for end of life care nurses at Sault Area Hospital, Canada. Even if this was the case, the ideas that Runde presents are very relevant to the topic at hand. The major aim of the paper is to equip the nurse with skills in identification of end of life care needs and the issues that revolve around the practice. Runde makes a case for the importance of considering cultural and ethnic backgrounds of the patients and their family in determining the needs for end of life care. She is of the view that culture impacts greatly on the preferences that are made by the patient and their family, due to the religious and belief systems that ride on the same. This opinion is also expressed by Bowman (2000: 19) in his editorial opinion article that is covered below.
This paper is approved by Jack Willet, the manager for critical care program in the hospital. This renders the paper an aura of credibility, having been approved by a professional.
Ian Anderson Continuing Education Program in End of Life Care, Bowman Kerry, 2000
This is an editorial opinion regarding a joint project of continuing education and the joint centre for bioethics, university of Toronto. The author is a clinical bioethicist at Mount Sinai hospital. Bowman Kerry is also an assistant professor at the same university.
The author opines that end of life decisions are greatly influenced by the cultural background of the individual (Runde 2007: 8). He gives a case of the situation in Canada, a country that can only be considered as one of the major multi cultural nations in the world. He speaks of how western medicine, when applied to end of life care, ignores the cultural orientations of the clients. This can only be rectified by having the care givers identify themselves culturally, and at the same time understand their clients from the same perspective. It is foolhardy to ignore the cultural background of the client, since doing so will lead to dissatisfaction.
End of Life Care for South Asian Immigrants in Halifax, Nova Scotia: Preliminary Findings, Weeransinghe, S Maddalena, V and Kanth F, 2008
This is a research study on the experiences of South Asian immigrants in the region as far as end of life care is concerned. The three authors are professionals from Dalhousie University, and they presented these findings as a working paper no. 19 for the Atlantic Metropolis Centre’s Working Papers Series. The study was informed by the fact that Canada is a multi cultural nation (Carrese and Rhodes 1995: 829), and sought to know how people from different cultures experienced end of life care in this setting.
The study found that the patients and the families studied were unable to face the reality of death, and found it to be unbearable. This collaborated the findings of Deshpande, Reid and Rao (2004: 135), who found that most culturally adherent communities found it hard to face death and dying. The patients and their family also valued bonding and a strong familial network at this time. This is not surprising given that most of these communities exhibit a lower level of individualism, and social networks are highly valued.
This study was conducted on South Asian Immigrants, majority of who are predominantly Indians. However, it is important to note that the findings of the study are applicable to other Asian communities living in Asia and elsewhere, given the similarity of culture and importance attached to the same in these communities.
Chinese Senior’s Perspectives on End of Life Decisions, Bowman KW and Singer PA, 2001
This was a research study that sought to examine the attitudes of Chinese elders towards end of life decisions. The study was conducted in a Chinese community centre in Toronto, but the findings can be extended to account for attitudes of Chinese elders living elsewhere, even in Hong Kong.
Bowman Kerry is a professional from Mount Sinai Hospital, while Singer Peter is from University Health Network. Both are affiliated to university of Toronto Joint Centre for Bioethics. The findings, which were published in Social & Medicine journal in August 2001 (volume 53 issue 4), were that these people rejected advance directives, which is the process of making advance decisions in preparation for death. The respondents were strongly grounded on the teachings of Confucianism, Buddhism and Taoism, which advocated for hope and peace at death. These findings were mirrored by Jones (2008) who was of the view that most Chinese patients left end of life decisions to their doctors and family members.
Quality Life Concerns and End of Life Care Preferences of Aged Persons in Long Term Care Facilities, Chan, H and Samantha, PM 2006
This was a research study conducted by these two PhD students at the School of Nursing, The Hong Kong Polytechnic University. The researchers were interested in finding out the quality of life concerns and end of life care preferences of older people who are residents of care facilities in Hong Kong. This was done by interviewing 287 respondents. The fact that this is a primary research conducted by PhD students and approved by a university senate makes the findings credible and of high quality.
The major findings reflected existential distress, value of life and food related issues as the major concerns for these residents. According to Kanth (2006: 10), Chinese community values food a lot and this is heightened in times of sickness. They will opt not to go or end of life care services in hospitals, opting for home based ones, if they are convinced that their quality of life will be jeopardised and culturally appropriate food will not be available.
The Impact of Palliative Care on Cancer Deaths in Hong Kong: A retrospective study of 494 Cancer Deaths, Tse et al, 2007
This was a retrospective study since it went back in time and studied the trends of cancer patients who were already dead by the time the study was conducted, tracing their activities in the last days of their lives. It was published in Palliative Medicine, heightening the quality of the findings since it had to be peer reviewed to be accepted for publication.
The study found that those patients who attended palliative care facilities were less likely to be admitted in emergency units in hospitals, and when admitted, stayed for lesser durations. However, those who did not have access to palliative care died in hospitals and were likely to be frequently admitted in emergency units in hospitals, staying for longer in these units. Emergency admission, dying in the hospital and longer stays in the hospitals are all indicators of poor end of life care (Smith 2009: 1). This is because the symptoms of the patient are poorly managed due to lack of end of life care, leading to increased frequencies of admission.
Though this study did not address end of life care in the context of culture and ethnic background, it highlighted the efficacy of this care in cancer patients in Hong Kong. This researcher opined that this study would be instrumental in clarifying the fact that end of life care is beneficial to all communities, regardless of their culture and ethnic background.
Negotiating Cross Cultural Issues at the End of Life, Kagawa-Singer, M and Blackhall, LJ 2001
This is a peer reviewed case study that seeks to establish how perspectives pertaining to end of life care vary from one culture to the other. The findings were published in the Journal of American Medical Association (volume 286 issue 283). Dr. Kagawa-Singer is affiliated to University of California’s School of Public Health and Asian American Studies, while Dr. Blackhall is affiliated to University of Virginia’s Centre for Palliative Care and Research. This makes the two authors forces to reckon with in their respective fields, given that they have a wide range of experience in what they are doing.
The authors found that culture shapes the way people make meanings out of issues such as illnesses, suffering, pain and dying. This will determine the choices that they will make when it comes to end of life care preferences. This is significant given that in contemporary society, patients are likely to come into contact with physicians who have a different cultural orientation. This heightens the risk for misunderstandings and miscommunications between the two, jeopardising the quality of end of life care (Heyland et al 2006: 780).
This study was conducted in the United States of America, where the researchers studied the opinions of people from different cultures pertaining to end of life care. However, the findings can be generalised to represent the case for culture and end of life care in developed nations, Canada and Hong Kong included. This is because most advanced nations have a culturally diverse population.
Focus Group Findings about the Influence of Culture on Communication Preferences in End of Life Care, Shrank, WH Kutner, JS Richardson, T Mularski, RA Fischer, S and Kagawa-Singer, M 2005
The findings for this study were published in the Journal of General Internal Medicine (August 2005, volume 20 issue 8). The authors, who are all affiliated to various departments in different universities, sought to explore the content and structure of end of life discourse aimed at maximising decision making. This was to be done by carrying out focus group studies with patients drawn from different ethnic and socio economic backgrounds. As such, the study can be viewed as been ethnographic in nature.
The study found that white Americans were exclusive when they were recommending family members to be included in the process of decision making when it came to end of life care. They preferred to have less family members, and desired to be given more information regarding their choices. This is as opposed to African Americans who included as many people as possible in the process, and requested spiritual information as opposed to medical one. This is a reflection of the different value and belief systems held by these two groups. According to Rocker (2003), African American and other such groups do value family and other forms of social networks, while at the same time attaching less importance in scientific information, preferring spiritual guidance.
The study was conducted on African Americans and whites in the United States of America, but the findings reflect the interplay of culture and end of life individual preferences in advanced nations.
Current Research Findings on End of Life Decision Making Among Racially or Ethnically Diverse Groups, Kwak, J and Haley, WE 2005
This is a literature review that was published in The Gerontologist (volume forty five 2005). Both authors are affiliated to University of South Florida’s School of Aging Studies.
The study involved review of thirty three empirical studies which addressed ethnicity and race as determinants of treatment choices and preferences. The literature review came found that Hispanic racial and ethnic groups were not as knowledgeable in matters of end of life decision making. This is for example making decisions such as advance directives. They were also less likely to support advance directives than their white counterparts. These differences can be attributed to the cultural characteristics and experiences of these groups. African Americans are superstitious, and generally believe that making decisions regarding death is a taboo (Smith 2009: 1).
What Matters Most in End of Life Care: Perceptions of Seriously Ill Patients and their Family Members, Heyland, DK et al 2006
The findings of this research were published in the Canadian Medical Association Journal (volume 174, issue 5), a peer reviewed publication. This makes it a high quality research. The aim of the reerachers was to find out what seriously ill patients in hospitals and members of their family considered to be chief components of quality end of life care.
The researchers found that 55.8 percent of the respondents considered trust and confidence on the care giver as the most important facet of a quality end of life care. This was just like in Jones (2008: 1), where the author holds that trust between the patient and the care giver is very important. It facilitates communication between the two, among other things. 55.7 percent were of the view that they should not be kept alive artificially when there was no hope of their recovery. This is to ensure that they die in dignity, and their quality of life is maintained. This view opposes the opinions held by the respondents in Kevlin’s article (2009), where a family member insists their father be kept alive artificially.
Cultural Competence in End of Life Care for Asian Indian Immigrants, Kanth, Furhana 2006
This is a literature review of articles touching on the experiences of Asian Indian immigrants when it comes to end of life care in Canada. This study is similar to the study that this author conducted in collaboration with two others (study cited number three above in this summary), the only difference being that the latter was a research study, not a literature review.
The research found that words such as death, dying and such others are considered taboo. This means that end of life decisions such as advance directives are not taken. This study was supported by the findings of Weerasinghe et al (2008: 7) which were of the view that Indians, and Asians in extension, were firmly grounded in Confucianism, Buddhism and Taoism which advocated for hope, rather than giving up. As such, decisions such as advance directives are viewed as indicators that the patient has lost hope, and does not have faith in the supernatural.
The articles had some central thematic content which the researcher found to be relevant for this study. These are represented in the theme table below: (the articles will be ordered 1-11, just the way they appeared on the summary given in chapter five).
- Cultural Diversity
- Impact of culture and ethnicity on end of life care individual preferences
- Conflict between culture and ethnicity on one hand and end of life care preferences on the other
- Cultural and ethical context in end of life care provision
- Culture, ethnicity and end of life care providers
Table 4: Theme Table
Results of Thematic Analysis
The analysis of the articles using thematic analysis led to the development of five themes. These are:
Cultural Diversity: Canada, Hong Kong and other developed nations have a diverse cultural heritage. Many cultures co-exist within the same society.
Impact of Culture and Ethnicity in End of Life Care Individual Preferences: The choices that people from Canada and Hong Kong, and in extension other developed nations, make are informed to a larger extent by their cultural and ethnic background. This is as far as end of life care service is concerned.
Conflict between Culture and Ethnicity and Provision of End of Life Care: There is a conflict between provision of end of life care services and the cultural and ethnical orientation of the consumers. This is especially so when it comes to minority groups in the developed nations.
Cultural and Ethnical Context of End of Life Care: End of life care services are always provided within a cultural and ethnical context. This is given that no society is devoid of these facets in developed world.
Culture, Ethnicity and End of Life Care Providers: The quality of the end of life care providers’ services is determined by how well they understand the cultural and ethnical background of their client.
When all of these papers are put together, the literature shows that culture and ethnic background are very crucial determinants of end of life care individual preferences. The choices that people make regarding the quality and type of end of life care that they will prefer are informed by their cultural and ethnic background. The literature also tells us that cultural diversity is a phenomenon to be found in majority, if not all, of advanced nations. End of life care providers conduct their duties within these cultural and ethnical contexts. There is usually a conflict between the services provided as part of end of life care and the cultural beliefs of the providers and the clients. Especially for minority groups, they seem to derive the least satisfaction out of the care. This is due to the fact that the providers rarely take into consideration the culture of the clients.
The themes identified from this research have some implications for the end of life care provider. During the preliminary literature review, the researcher realised that, among other things, minority groups are discriminated against in the provision of end of life care. This is because the services are tailored by members of the dominant groups for their type. This, the researcher found out, influenced the decisions that members of minority groups made when it came to end of life decisions. This view was supported by the findings after the critical literature review.
The themes answered the questions that the researcher set out to investigate, at least to some extent. The researcher found that it is a fact that culture and ethnicity influences the decisions made in end of life care individual preferences in developed nations.
But some questions emerged from the analysis. For example, why do immigrants who live far away from their country of origin get influenced by their cultural heritage when it comes to making end of life care decisions? Is it not possible for them to adapt to the standard of services provided in their country of adoption? Another question that emerged was, is it possible to come up with a universal end of life care that can satisfy people of all cultures?
These findings point to the fact that end of life care providers need to be more sensitive to the cultural and ethnical backgrounds of their clients when they are providing this service. These findings will help the researcher in their practice to adopt a culturally sensitive approach as they provide end of life care to patients. This will satisfy the patients and improve the quality of their last days in life. Their families will be in peace, realising that their loved ones will die in peace also.
There are some limitations that were associated with this methodology. For example, the researcher found a lot of articles that had been published in Chinese, but could not use them due to language barrier. This greatly diminished the number of articles covering end of life care in Hong Kong and other Asian countries.
Conclusions and Recommendations
This study set out to examine individual preferences for end of life care for people within a culturally and ethnically diverse background in developed nations. Two countries, Canada and Hong Kong, were selected for the study. The researcher found out that end of life decisions are greatly influenced by the culture and ethnic orientation of the patients. This is of great significance given that most advanced nations are culturally diverse. Minority groups, especially those composed of immigrants, were found to derive the least satisfaction from end of life care due to the fact that they did not address their culture.
There are some misconceptions in the society to the effect that end of life care services can be consumed and satisfy people from all walks of life. This is erroneous given the fact that even in their death beds, people do cling to their cultures and belief systems.
The researcher recommends that health care providers come up with strategies that will ensure that end of life care services are sensitive to the culture and ethnic orientation of the consumer. It is alright to enshrine the right of access by every citizen to quality health services, but an important question that the policy makers should ask themselves is, what does quality mean? Is quality relative to the individual experiences or is it standard? Do all people have the same criteria for judging quality end of life care? These questions will help them formulate policies that will lead to higher levels of satisfaction for people of varying cultural and ethnical orientation. It is also recommended that special attention be given to minority groups, as they are usually marginalised when it comes to end of life care services.
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