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Palliative care has been developing strongly in recent decades and now has a global reach, albeit with patchy coverage. As it has grown into a recognizable ﬁeld of activity, discernible ﬁssures have opened up in its approach and orientation. Palliative care grew out of a hospice-type response to the needs of dying cancer patients. Its model of care ﬁtted a particular trajectory of treatment and the associated illness experience. Within that model it identiﬁed an ethical and moral space in which to promote the holistic care of the patient and family, and it adopted particular strategies for pain and symptom management. Now in many countries, it seeks to meet the complex needs of aging populations characterized by multiple morbidities – in situations where demand for end-of-life care is growing. This requires it to adopt an ethics of public health and to champion the claim that access to palliative care is a human right. In addition to these clinical and service-level challenges, palliative care has to ﬁnd an appropriate orientation to contexts where assisted dying is legalized. This may require it to modify its historic opposition to assisted death.
Palliative care in its modern guise ﬁrst emerged during the 1960s and 1970s, though its roots and antecedents are much older. It seeks to prevent and alleviate suffering associated with life limiting illness, and it is particularly associated with care at the end of life. Its principles are holistic and multidisciplinary, focusing on physical, social, psychological, and spiritual concerns in the context of serious illness. To these ends, it engages the skills of medicine, nursing, social work, psychology, allied health professions, family members, and often volunteers and wider communities. It has developed speciﬁc expertise in the understanding and management of pain associated with advanced disease, and it provides expertise in relation to other, often complex, symptoms that may occur across the trajectory of illness. Within the organization, delivery, and practice of palliative care, ethical and moral concerns feature signiﬁcantly.
In some ways, palliative care has the attributes of a single-issue social movement, since it has engaged the interests and commitments of those well beyond the world of healthcare delivery and it is focused around a speciﬁc aspect of care. But it is also a multifaceted ﬁeld of specialization, with associated academic endeavors in teaching and research and a growing recognition among professional societies, scientiﬁc funders, universities, and training establishments. It has been drawn to a public health paradigm when considering levels of need, appropriate policies, and services for delivery, together with suitable quality assurance and evaluation. It also makes an expanding claim for recognition as a human right. Increasingly, the reach of palliative care extends to health policymakers, politicians, and global health organizations and discourses.
Palliative care has a close but sometimes complex relationship with hospice care, and this differs across countries of the world. Many varieties of hospice and palliative care delivery can now be observed in a wide variety of settings. While few of these are supported by proven evidence of success, they do testify to the rich ﬁeld of activity and the imaginative and diverse approaches that have been developed in different resource, cultural, and healthcare contexts. Palliative care is also seeking to develop an appropriate relationship with other areas of the healthcare system, in particular those primarily focused on curative treatments, rehabilitation, or the management of long-term conditions. It faces speciﬁc challenges in the face of changing demographics, epidemiology, and patterns of symptomatology.
The distribution and availability of palliative care globally are known to be highly inequitable, being concentrated in a small number of countries, and has led the World Health Assembly to call on all governments to give it higher priority. It has been estimated that less than 10 % of those who might beneﬁt from palliative care currently have access to it worldwide. Only 20 countries have achieved a signiﬁcant degree of palliative care development as demonstrated by levels of service provision, education, drug availability, research, ﬁnancing, and policy recognition. Palliative medicine is recognized as a specialist ﬁeld of activity in around 25 countries worldwide.
History And Development Of Palliative Care
The origins of modern palliative care lie in a movement to improve care of the dying that conﬁgured around notions of hospice care. From the 1950s and 1960s, activists such as Cicely Saunders in the United Kingdom and Florence Wald in the United States looked to a hospice tradition that had got underway in the late nineteenth-century homes for the dying that developed in France, Britain, America, and Australia. Many of these hospices and homes for the dying were run by religious orders and gave close attention to spiritual care at the end of life.
But the twentieth-century activists were a mixture of people with and without religious inspiration. They sought to reinvent older hospice traditions in a new guise and in so doing to challenge the growing Western tendency to deny death and to sequestrate the dying. The “hospice movement” was a small revolution against prevailing death ways in Western culture. In some instances, it was a reaction against meddlesome medicine and futile interventions. In others, it was stimulated by the medical neglect of the dying in healthcare systems that prioritized cure and rehabilitation over the needs of those close to death.
The development of modern hospice care had many characteristics of a new social movement. It was associated with a single issue and fostered by strong advocacy as well as charismatic leadership. It grew out of communities of interest, communities of practice, and communities of place. In many instances, services were initiated without the endorsement of the formal healthcare system, but with strong local support. This often led to tensions and confrontation as the hospice pioneers sought recognition for their cause in the face of skepticism, indifference, and bureaucratic inertia.
To succeed “at scale” – and thereby meet population-level needs – it became increasingly clear that hospice ideas and practice would need to ﬁnd a place within the mainstream of healthcare systems and structures. This was recognized in the early 1970s by the Canadian surgeon, Balfour Mount, who also took the view that the work needed a different nomenclature. He coined the term “palliative care,” drawing on established medical notions of palliation but also on wider meanings of the word in relation to “cloaking” or “shielding.” The ﬁrst named palliative care services soon began to appear. In the 1980s journals, training programs and major conference came to be dedicated to palliative and hospice care. In 1987, the United Kingdom was the ﬁrst country to recognize palliative medicine as a specialist area of activity.
Services also diversiﬁed, and palliative care began to be delivered in specialist inpatient units and hospices but also in the wards and outpatient clinics of acute hospitals, in the community, in residential care settings, and in people’s own homes. Commensurate with this was a growing interest in research, evaluation, and attempts to develop policies and strategies for palliative care delivery for whole jurisdictions. Palliative care was taking on the characteristics of a “ﬁeld” which could be recognized alongside other specialties in health and social care and bore the recognizable hallmarks of an evidence base, standards and guidelines, codes of training and practice, and professional accreditation.
Professional bodies proliferated and emphasized the multidisciplinary aspects of palliative care as a ﬁeld that involved medicine, nursing, social work, psychology, spiritual and religious support, and the involvement of allied health workers and volunteers. Some of these developed their own specialist journals. Beginning with links between individuals and the services in which they worked, international collaborations began to develop, and these led to major conferences, the creation of international professional societies, and a growing awareness of the global development of palliative care – and the many challenges which it faced.
From the mid 1990s, research studies were conducted which mapped the differential development of palliative care in speciﬁc regions of the world and also globally. Understanding grew of the common elements that united the palliative care ethos, but also of the differences within it, the variations in local practice cultures and assumptions, and the speciﬁc ethical challenges to which they gave rise.
There has been signiﬁcant debate – and no lack of disagreement – about the various deﬁnitions and models of palliative, end-of-life, and hospice care that now exist. The World Health Organization has produced two deﬁnitions, in 1990 and in 2002, but many more have been reported in the literature. Deﬁnitional problems continue to inhibit clarity of thought and action in the ﬁeld.
A paper focusing on deﬁnitions of the term “palliative medicine” and “palliative care” in two languages found a total of 37 English and 26 German versions, conﬁrming a lack of a consistent meaning (Pastrana et al. 2008) about key terms and approaches. In 2004, a National Institutes of Health State-of-the-Science Conference Statement noted that “There is no exact definition of end of life; however, research supports the following components: (1) the presence of a chronic disease(s) or symptoms or functional impairments that persist but may also ﬂuctuate; and (2) the symptoms or impairments resulting from the underlying irreversible disease that require formal either paid, professional or informal unpaid or volunteer care and can lead to death” (NIH 2004). Surprisingly, a 2012 volume offering an international public health perspective on the subject offered no clariﬁcation, often using “end-of-life care” interchangeably with “palliative care” (Cohen and Deliens 2012).
There are similar problems associated with the deﬁnitions of assisted dying. McLean uses the term to encapsulate events which might otherwise be described as (physician) assisted suicide or voluntary euthanasia and notes that although mechanically they differ, at the heart of each of them is the positive choice for death (McLean 2007). “Assisted dying” and “euthanasia” are terms that have proved notoriously difﬁcult to deﬁne and are subject to multiple interpretations (Materstvedt et al. 2003). In these speciﬁc areas, carefully crafted deﬁnitions produced by philosophers are often roughly handled by publics and protagonists who use distinct and separate terms interchangeably or with a lack of clarity of meaning. This is a sociological reality which can undoubtedly create a gulf between formal conceptual work and the living world of disputation, action, and decision making. It is easily witnessed in the inexact drafting of bills to legalize assisted dying that come before parliaments around the world.
The Clinical Realm
As palliative care developed into a recognized ﬁeld of practice, it sought to deﬁne its areas of interest and competency. This has remained a matter for debate and contestation.
In the nineteenth century, medical writers such as William Munk focused their attention on “easeful death” as their principal objective, when efforts to prolong life were no longer productive. Munk, in common with his predecessors from earlier in the century, used the term “euthanasia” to describe this. He was referring to the relief of suffering through the judicious use of pain medication, to the management of the sick room and deathbed in achieving dignity and comfort, and to the role of religious solicitude in preparing the dying person for a life to come, surrounded by family and friends. By such means, the idealized “good death” was to be realized.
But as the nineteenth century came to a close, the meaning of “euthanasia” quite quickly began to change. If suffering might be relieved by the administration of strong opiates, such as morphine and diamorphine, which had been synthesized and put into commercial production in earlier decades, might suffering also be prevented by more direct intervention? And might indeed death be hastened deliberately by the physician in order to achieve this? Now some doctors began to take a serious interest in this issue, which also became a matter of public debate and controversy. As the public inﬂuence of religion in Western culture moved into a phase of decline, attention focused less on the meaning of death and the afterlife and more on the process of dying and the ability to exert control over it. Medicine had become the central inﬂuence over the deathbed.
Therein developed a struggle, for if some doctors endorsed the new deﬁnition of euthanasia and supported its legalization, others were opposed to this on religious and moral grounds and sought to direct their efforts to improving care in advanced illness and thereby to thwart the need for musicalized killing. This ethical divide became an increasingly marked feature of Western medical culture during the twentieth century and by the start of the twenty-ﬁrst century was also in evidence in some low and middle-income countries. It fueled an ethical debate signiﬁcantly inﬂuenced by Christian ideas about the sanctity of life, but over time it was taken up in other religious and cultural contexts. By the second decade of the twenty-ﬁrst century, it appeared to have become a matter of global interest.
Perhaps the strongest voice in opposition to euthanasia and in support of palliative care was that of Dr Cicely Saunders, who founded St Christopher’s Hospice, the world’s ﬁrst modern hospice, in London in 1967. As a lifelong opponent of euthanasia, she argued consistently that demand for assisted death diminishes wherever the principles of good palliative care are in evidence. Her central instrument in support of this claim was the concept of “total pain,” which recognized that the suffering of a person at the end of life can be multifaceted – physical, emotional, social, psychological, and spiritual. It was to the suffering at this level that she addressed her attention, with notable success. But for Saunders, the practice of hospice and palliative care was not simply a medical service. It was enriching of society and a measure of its moral worth. This enabled palliative care to ﬁnd a wide audience, beyond that of healthcare workers and specialists. It attracted volunteers, fund-raisers, and well-wishers, convinced that its ability to control pain and other symptoms and its determination to give dignity to the dying and bereaved were skills and values worth promoting across the whole of society.
The control of pain in palliative care has been the topic of much scrutiny and debate. The principle of double effect has been used to justify the administration of proportionate medication to relieve pain even though it may lead to the unintended, albeit foreseen, consequence of hastening death, for example, by causing respiratory depression. Some have argued that there is little evidence to support the view that such analgesics carry this risk. From this perspective, the belief in the double effect of pain medication perpetuates the under treatment of physical suffering at the end of life. At the same time, the concept of double effect in the use of opioids has also been used to support the legalization of physician-assisted suicide and euthanasia. This argument typically takes one of two forms. First, it is argued, as hastening death by drugs is already being done and is ethical, medical practice should be extended to allow physician-assisted suicide. The second argument is that because physicians are already hastening death, euthanasia should be legalized in order to provide safeguards, checks, and appropriate controls (Fohr 1998).
Clinical practice in palliative care acknowledged that at times refractory symptoms, often highly distressing to patients, family members, and staff, could be difﬁcult to manage. Interest grew in using deep sedation (variously termed) as an approach to this problem. Comparative studies showed how rates of sedation at the end of life varied between settings and countries. The notion developed that the dying process for many had come to involve a set of decision-making processes, some of which result in the decision to sedate the patient. This might be on a temporary basis or until such time as death ensued. It might also be at the request of the patient. Palliative care was called on to produce deﬁnitions, guidelines, and studies of this practice in order to give clarity and transparency to its procedures. In this context, the focus was not on the use of opioid drugs, but rather on benzodiazepines, such as midazolam. There was also the need to distinguish the practice from euthanasia, usually explained by the process of titrating the drugs to achieve sedation while maintaining respiratory function and not hastening death.
As the clinical practice of palliative care developed through the last quarter of the twentieth century, other issues began to challenge its development. Deﬁned from the outset as a multidisciplinary endeavor, nevertheless, the role of medicine appeared to be primus inter pares. There was a tendency for medical perspectives, medical assumptions, cultural practices, and medical solutions to frame the debate about how palliative care should develop. This was often because palliative physicians were looking over their shoulder at other specialties and seeking to keep pace with developments in cognate ﬁelds – oncology, geriatrics, cardiology, and respiratory medicine. It led some external commentators to argue that a process of “medicalization” was at work within palliative care that would quickly dissipate its early more holistic intentions. There were also detractors from within, who cautioned against palliative medicine becoming “just another specialty” and for whom an overemphasis on pain and symptom management seemed to be at the expense of attending to the “whole” person – including not only a person’s physical problems but also social issues, spiritual, religious or existential matters, as well as the needs of family caregivers, and matters of psychological and mental health. For some this raised concerns that the specialty of palliative medicine might make progress at the expense of the early goals of palliative care.
Palliative care began with an unequivocal focus on patients and families affected by cancer. It seemed that the widespread stigma associated with the disease, the poor prognosis that existed in many instances, the fairly predictable progression and the possibility of severe pain, and other debilitating symptoms all combined to make a perfect testing ground for the palliative care ethos. This came to be known as the “rapid decline” trajectory, and it appeared to ﬁt well with the perspective of hospice care – primarily focused on the ﬁnal months and weeks of life. Palliative medicine at ﬁrst locked onto this paradigm and gave particular focus to alleviating the challenging problems associated with speciﬁc pain syndromes, as well as breathlessness, anorexia and cachexia, anxiety, and depression – all of which came to be seen as key determinants of “quality of life” in patients with advanced cancer.
Over time there were calls to extend the perceived beneﬁts of palliative care, beyond patients with cancer to those dying from – and living with – other conditions. This meant two things. First, patients started to be seen for whom the medical context was less familiar. Initially, this was people with neurological conditions such as multiple sclerosis and motor neuron disease, but in time it was extended to those with heart failure, stroke patients, people with dementias, as well as those affected by HIV/AIDS. Second, there was pressure to move palliative care interventions further “upstream” in the disease progression, to earlier stages of the illness, where palliation might sit alongside curative treatments and interventions. Now palliative care began to uncouple from the paradigm of terminal illness and eventually to reframe itself as an “extra layer of support” for patients – right across the treatment trajectory, with its various consequences and side effects.
The distinction between “cancer” and “noncancer” palliative care was in evidence for a period from the 1990s but became less commonly used over time. This was driven by the growing recognition of multiple morbidities and symptom burden that occurred in medicine and which seemed particularly relevant to palliative care. At the same time, cancer was in many Western countries making the transition into a treatable disease, associated with the new phenomenon of cancer survivorship and of cancer as a “chronic” and/or “social care” issue. Palliative care therefore had to focus on patients with complex multiple problems, which might endure for potentially long periods. Attempts were made to characterize these into speciﬁc “trajectories” of dying, but if these seemed to make sense conceptually, they were found not to map easily onto any empirical reality. In the West at least, the epidemiology of many cancers migrated into that of a chronic disease, and at the same time the concept of multiple morbidities became increasingly recognized clinically – meaning that the care of patients became more complex and protracted in a setting where patterns of decline associated with frailty, dementia, and impoverishment became more prevalent.
This shift was also associated with population aging. The “baby boomers” drew attention to the growing reservoir of care needs in later life that resulted from the heightened birthrate in the two decades before the mid-1960s. And at the same time, these people were set to live longer lives, as the twentieth century increased life expectancy due to improved healthcare and public health measures. This in turn became a global issue. Around 58 million deaths occur in the world every year, and the number may rise to 90–100 million by mid-century and beyond. The increase in the number of deaths will be caused by population growth and population aging, in combination. The likely demand this will place on caregivers and services suggests a humanitarian issue – if not crisis – of enormous scale and complexity.
If modern palliative care had begun in the 1960s and 1970s with the certainties of cancer as a “terminal” disease of predictable course, by the second decade of the twenty-ﬁrst century, it was located in far less predictable settings – sitting alongside curative interventions, closely tied in with the needs of older people, but also subspecialized in pediatrics as well as in other medical specialties. When accreditation for hospice and palliative medicine was achieved in the United States, it was formalized as a subspecialty of no less than ten ﬁelds of specialist care. In each case, new knowledge would be required in order to build a palliative care orientation matched to a specialist ﬁeld of medical intervention and also to the social dimensions of the underlying disease type or the complexities, where they occurred, of multiple morbidities. In short, the medical landscape in which palliative care is required to operate had become much more complex and nuanced by 2015 than it had been 50 years earlier, when the ﬁrst transatlantic collaborations were developing between the early pioneers.
Assisted Dying And Palliative Care
In the same period that palliative care gained traction, so too did debates and arguments in favor of the legalization of assisted dying – particularly in afﬂuent countries. In the Netherlands, euthanasia was being practiced by physicians in a decriminalized context from the early 1990s onward, using a procedure of notiﬁcation. The ﬁrst legal case of euthanasia in the world occurred in the Australian Northern Territories in 1995, though the legislation was quickly reversed. Assisted suicide was approved by voters in the US state of Oregon in 1994 and legalized in 1997; subsequent endorsements occurred in the states of Washington (2008), Montana (2009), Vermont (2013), and New Jersey (2014). Full legalization of euthanasia and assisted suicide was passed in the Netherlands in 2001 – the ﬁrst national legislation to do so. Belgium followed in 2002 with legalization of euthanasia only. In Luxembourg, euthanasia and assisted suicide were legalized in 2009. In Switzerland, where the subject of “suicide tourism” has attracted considerable debate, assisting a person to die is not an offense in certain circumstances.
Across many other countries, parliamentary debates have taken place, laws have been drafted, and wider public discussion gains momentum around the theme of assisted dying – how, in what circumstances, and with what safeguards might some form of legislation be framed that permits “choice” in dying – allowing persons a measure of control over the manner and timing of their death? Nevertheless, as the European Court of Human Rights has noted, there is no consensus in Europe on the ethics of assisted suicide, and indeed, the Council of Europe (2012) has stated that “Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged beneﬁt, must always be prohibited.”
The mainstream orientation of palliative care toward assisted dying is essentially oppositional. It is rare to see palliative care practitioners endorsing such practices and unusual for them to be viewed as a part of the delivery of palliative care.
In the public consciousness, there might not be so much “clear water” between the two positions however. The furor in the United Kingdom over the widespread use of the Liverpool Care Pathway (LCP), for example, revealed that from the perspective of relatives and patients themselves, the “best palliative care practice”– withdrawing interventions, closely monitoring symptoms, and aiming for the minimization of suffering and discomfort – was seen as a form of backdoor euthanasia. Indeed, the public discussion on this, the review of the LCP, and its eventual withdrawal in 2013 may well have brought to an end the era of what we might call “unconditional positive regard for palliative care” in the public consciousness.
The ideological orientation of palliative care practitioners has been to oppose assisted dying on the grounds that it is not needed when palliative care is fully available. And of course a subset opposes it on moral or religious grounds. This is challenged by supporters of assisted dying who claim that palliative care can never be the sole solution in all cases and contexts. They argue for choice and self-determination, suggest that even the best palliative care cannot always eliminate suffering, and also point out that some “consumers” of services may not be attracted to the ethos of palliative care for various reasons, such as its religious connections, its desire to delve into spiritual and existential areas where it does not belong, or its unwelcome associations with charity or volunteer involvement.
The protagonists have been engaged in a struggle where “dignity” has become the contested space, with each side claiming to provide it. Key to the palliative care ethos in the early days was the dignity of the patient. But organizations practicing or promoting assisted dying have adopted “dignity” within their names, for example, Dignitas (Switzerland), Dignity in Dying (United Kingdom), and Association for the Right to Die with Dignity (Spain). Both groups also have in common an emphasis on the “quality of life.” For those in favor of assisted dying, quality of life is a key element in the argument. When it is poor and likely to deteriorate further, then the case for “choice” in dying must be advanced. But from the palliative care side, poor quality of life is seen as a clinical challenge to be overcome and remedied, through the skills and involvement of a multidisciplinary team.
In Belgium, the two viewpoints have been encouraged to sit side by side. Not only is euthanasia legal in Belgium, but at the time of its enactment, palliative care services were already well developed in the country. Indeed, some palliative care teams see euthanasia as a part of the service they offer – the so-called “integral” model of palliative care. Bernheim (2008) found that in Belgium the movement for legalization of euthanasia promoted the improvement of palliative care, and the existence of sufﬁcient palliative care was instrumental in making the legalization of euthanasia ethically and politically acceptable. But this reciprocal approach may only be prevalent in one part of the country. One study aimed to ﬁnd out how Flemish palliative care nurses and physicians think about euthanasia (Broeckaert et al. 2010). An anonymous questionnaire was sent to all physicians (147–70.5 % response) and nurses (589–70.5 % response) employed in palliative care teams and institutions in Flanders, Belgium. Analysis of the euthanasia questions identiﬁed three clusters: (moderate) opponents of euthanasia (23 %), moderate advocates of euthanasia (35.2 %), and staunch advocates of euthanasia (41.8 %). A majority in all clusters believed that as soon as a patient experiences the beneﬁts of good palliative care, most requests for euthanasia disappear and that all palliative care alternatives must be tried before a euthanasia request can be considered. Since most Flemish palliative care nurses and physicians were not absolutely against voluntary euthanasia, their attitudes may differ from those of their palliative care colleagues elsewhere. However, the attitudes of the Flemish palliative care nurses and physicians are largely contextual. For a very large majority, euthanasia is an option of last resort only.
In the US state of Oregon, where assisted dying has been legal since 1997 and where the number of cases remains low at around 0.21 % of all deaths per annum, claims have been made that there exists an ideal and comprehensive system for end-of-life care. Around one third of those issued with the lethal prescription to end their own lives never use it. Moreover, in a context where hospice and palliative care services are well developed, some 90 % of those availing themselves of the assisted dying legislation are on hospice programs. Could this prove a model for other jurisdictions? A study by Goy and colleagues (2003) found the majority of hospice nurses and social workers noted positive changes in the provision of palliative care by physicians since the introduction of the Oregon Death with Dignity Act, apart from a level of apprehension when prescribing opioid medications.
In the Netherlands, a rather different picture is in evidence. Here, palliative care developed in the context of a country which had decriminalized euthanasia and where such a practice was accepted by the majority of the population. This is the reverse of the situation in many other countries. It meant that palliative care in the Netherlands developed at ﬁrst in isolation from the wider palliative care community – which paradoxically was often intensely interested in the practice of euthanasia in Holland. It was not until 1991 that the ﬁrst hospice was established in the Netherlands. Later in the 1990s, signiﬁcant government funds were invested in centers of excellence for the promotion of palliative care. Meanwhile, problems with the legal framework of euthanasia were in evidence – insecurity for physicians in following at times unclear legal requirements, a growing sense of the right of euthanasia on demand among the public, and a sense of normalization surrounding its practice (Gordijn and Janssens 2004). The high-care hospices in the Netherlands remain centers of opposition to euthanasia; elsewhere, the practice is not criticized, but there is a clear moral argument from the palliative care community that greater availability of their services will reduce the demand for assisted death. Despite this and the growth of palliative care in the Netherlands, the number of cases of euthanasia each year has been increasing.
The “slippery slope” argument continues to underpin some of the debates about whether or not assisted dying should be legalized. Perreira (2011), a professor of palliative medicine, has argued that in all jurisdictions that have legalized euthanasia or assisted dying, there has been disregard for the laws and safeguards that were put in place to prevent abuse and misuse of these practices. Prevention measures have included, among others, explicit consent by the person requesting euthanasia, mandatory reporting of all cases, administration only by physicians (with the exception of Switzerland), and consultation by a second physician. He provides evidence that these laws and safeguards are regularly ignored and transgressed in all the jurisdictions and increased tolerance of these transgressions in societies with such laws represents a social “slippery slope,” as do changes to the laws and criteria that followed initial legalization. Although the original intent was to limit euthanasia and assisted suicide to a last-resort option for a very small number of terminally ill people, some jurisdictions now extend the practice to newborns, to children, and to people with dementia. A terminal illness is no longer a prerequisite. In the Netherlands, euthanasia for anyone over the age of 70 who is “tired of living” is now being considered. Legalizing euthanasia and assisted suicide, Perreira argues, places many people at risk, affects the values of society over time, and does not provide controls and safeguards.
From the still small number of countries where euthanasia and assisted dying are legal or decriminalized, it does not seem possible to ﬁnd evidence that the development of palliative care has been compromised. Nevertheless, the two remain in uneasy relationship. It seems that within the community of palliative care practitioners, there remains higher resistance to legalizing assisted dying than is found among healthcare workers in particular and the wider society as a whole. As the extent of legalized assisted dying increases, this may precipitate a signiﬁcant practical and moral challenge to the ﬁeld.
Public Health, Equity, Human Rights, And Palliative Care
The need for palliative care has been heavily deﬁned by the disease status of patients and their particular associated needs. But as the ﬁeld matured, a new front of exploration opened up associated not with the diagnosis, organ of the body, or disease severity but with the particular places, settings, and social groups that might beneﬁt from palliative care. Specialist interest began to develop in palliative care for prisoners, for homeless people, and for those identifying as lesbian, gay, bisexual, or transgender. Palliative care availability and access were increasingly framed as a matter of “equity” and then of “human rights.” After 2000 a number of key developments took place in end-of-life care globally, including a series of important “summit” meetings on international palliative care development and the creation of the Worldwide Palliative Care Alliance. In autumn 2011, two separate declarations emphasized the importance of palliative and end-of-life care. In the ﬁrst, the United Nations (2011) made reference to the need for palliative care provision in its statement about the care and treatment of people with noncommunicable disease. In the second, the World Medical Association (2011) made its case for end-of-life care improvement, stating that receiving appropriate end-of-life medical care must not be considered a privilege but a true right, independent of age or any other associated factors.
The palliative care community itself has also been active in producing exhortatory charters and declarations, usually promoted at specialist international conferences. These call on governments to develop health policies that address the needs of patients with life-limiting or terminal illnesses and to promote the integration of palliative care alongside other health services. They promote the need for access to essential medicines, including controlled medications, for all who need them and focus on the identiﬁcation and elimination of restrictive barriers which impede access to strong opioids for legitimate medical use. They also emphasize the importance of the supply line for such drugs, along with appropriate rules and laws governing their distribution and prescription, by properly trained practitioners. Such calls underline the need for appropriate initial and undergraduate education programs for healthcare providers to ensure that basic knowledge about palliative care is widely disseminated and can be applied wherever there is the need in the healthcare system. They also highlight the need for postgraduate and specialty palliative care programs so that patients with complex problems can receive appropriate care. Key to all this – and at the heart of the public health orientation – is the requirement that palliative care is properly integrated into wider healthcare systems with services designed in relation to need and demand.
The claim that palliative care is a human right seems to be but partially founded (Open Society Foundations nd).
The United Nations Committee on Economic, Social and Cultural Rights has stated that it is critical to provide attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity. Also, under Article 12 of the International Covenant on Economic, Social and Cultural Rights and Article 7 of the International Covenant on Civil and Political Rights, countries are obliged to take steps to ensure that patients have access to palliative care and pain treatment. Likewise, according to the UN Committee on Economic, Social and Cultural Rights, states are under the obligation to respect the right to health by refraining from denying or limiting equal access for all persons to preventive, curative, and palliative health services. Access to palliative care is a legal obligation, as acknowledged by United Nations conventions, and has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. In cases where patients face severe pain, government failure to provide palliative care can also constitute cruel, inhuman, or degrading treatment. But, of course, governments of many different stripes can ﬂout the law and ignore human rights.
Palliative care has undergone a period of rapid development since the 1970s, yet it remains an evolving ﬁeld in which it faces several challenges. It must decide if its focus is on an “extra layer of support” throughout the trajectory of treatable illnesses, whether or not life is threatened, or whether its focus is on advanced and life-limiting illness, with a particular focus on end-of-life care. This requires clearer and more consensual deﬁnitions of its ﬁeld of interest. It must also adapt to the consequences of population growth and aging. How can its specialist services be delivered at scale to all who might beneﬁt from them? In turn, how can it adapt to new trajectories of aging and dying associated not with the “rapid decline” of the cancer model but rather with the uncertainties and prognostic difﬁculties associated with frailty and dementia? Over time it must also ﬁnd a more sophisticated stance in relation to assisted dying. As increasing numbers of jurisdictions enshrine this in law, the oppositional stance of the palliative care community will become more difﬁcult to maintain.
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