Implementing Palliative Care Without Curative Care
Emma Elisabeth Nündel
International Studies student
HC Governance and Global Affairs
''This paper is my final essay for 'Anthropological Perspectives on Dying and End-of-Life Care'. The class was one of my favorite classes I took at Leiden University so far, although it is rather disconnected from my regular studies. I ended up examining the discussion about palliative care implementation in countries that cannot afford widely available curative care yet. It is a difficult topic with quite a number of risks involved, however, I ended up finding my personal stance within the discussion that tries to seek implementation of palliative care in a way that establishes helpful infrastructures for an implementation of curative care in the future. From this assignment and the class in general I learnt to do research on rather sensitive topics and how to summarize my findings and voice my position within such a debate in an appropriate and hopefully tasteful way.
Curative care is expensive to be established as well as to be maintained. This poses a challenge to most countries, especially to ‘developing’ countries that struggle to locate sufficient funds in order to establish these services for the public (Callaway et al. 2007, 512-513; Ddungu 2011, 729). When curative care is not available, many people suffer while they cannot get the treatment that they need to get better in the first place. Palliative care, the care that focuses on treating symptoms on a physical as well as mental level (Crane 2010, 1613), is more affordable and can often help lessen the suffering of many people who have fallen ill. Although many treatments in the sphere of palliative care are not as expensive as the ones in curative care, there are concerns with providing this form of care before curative options are widely available to the public, for example about the symbolic message that it sends to the public. This essay examines whether palliative care should be installed in countries or places that are not able to provide curative care yet. Three main aspects that are commonly discussed among scholars will be discussed, namely being what kind of implications or public message an installment of palliative care before curative care is accompanied by, how to distribute resources, and what unintended consequences can occur.
The message to the people
When discussing to implement palliative care before curative care is widely available, one of the first issues to come up is the overall significance of these actions, and how they might be understood by the population, by other governments, or by international actors. While providing palliative care options is a sign that governments work on taking care of their citizens, having in mind their well-being in this time of disease, palliative care is also associated with preparing for death. Preparing people for death when there are extremely limited options for being cured and defeating the disease altogether transforms this original message of wanting to take care of the citizens to a more questionable and controversial meaning. The people of the given country might wonder why their government prioritizes ‘a good death’ over prolonging life. This is a valid question to ask, and it connects to more specific issues at the root of why curative care is so difficult to provide: into play come mainly financial resources, education of staff and education of the general public. However, since curative care options are not available to large parts of the population, many people are suffering in extreme pain and could be relieved of it very easily, including those whose disease is too far advanced to treat altogether.
At the root of this perceived message is a miseducation about palliative care, within the general population but also in the sphere of medical professionals and physicians – “’Modern principles of pain relief and palliative care still aren’t taught to medical students in 80% of the world’” (Lamas and Rosenbaum 2012, 200). Such a lack of education and awareness reinforces a general stigmatization of drugs, focusing solely on for example the addictive and destructive characteristics of heroin and not the pain relieving facets of morphine. This phenomenon is often referred to as Opiophobia. With pain relief at the heart of palliative care and its goals, it is essential to make pain relieving medicine accessible on infrastructural, financial, and social levels. In various countries, for example in India, Mexico, or the Ukraine, morphine availability is blocked by governmental restrictions, making it too difficult for physicians and patients respectively to attain the medication (Lamas and Rosenbaum 2012, 200-201). These governmental blocks are largely due to a great fear of drug abuse, making it difficult to educate professionals or general public of the benefits and less harmful nature of substances such as morphine that help immensely with pain relief. Such mechanisms in combination with mainstream media rather portraying narratives of drug abuse than narratives about patients in need of pain relief provide a harmful system in which palliative care does not find positive association. Educating professionals and local communities could be a way to combat these harmful ideas about palliative care, showing that pain relief medication is not equivalent to drug addiction and that these medications have great benefits for the comfort of the patients.
Criticizing the implementation of palliative care before curative care may also be dismissive of people’s real needs. The criticism is often based on the idea that most people suffer from diseases that are curable or at curable stages. Therefore, some people assume that prioritizing palliative care means to neglect patients their right to curable treatment. However, in many countries, need for palliative care actually outpaces the need for treatment, due to the fact that many patients only receive diagnoses at late stages of their disease, when treatment does not provide large chances of success anymore (Crane 2010, 1613). In such cases, palliative care most often improves the quality of life for the patients as well as for the families (Kordzaia 2011, 540), and in some cases, it might also lead to a prolonged survival in comparison to other treatments that do not focus on the comfort of the patients (Crane 2010, 1613). Creating awareness of this misconception and the actual circumstances in most countries is necessary in order to educate people about the nature of the effort to introduce and normalize palliative care systems. Such an installation of palliative care systems can also function in a way to detect other cases of disease earlier, and therefore at a stage when curative care is still an option with higher success chances, according to Frank Ferris, the director of international programs at San Diego Hospice and the Institute for Palliative Medicine (Crane 2010, 1613). Taking into consideration that palliative care is a need for so many patients in the Global South, and that palliative care structures might even lead to an improved system to diagnose other people at earlier stages, the initial controversial message of prioritizing a comfortable death over actual cure does not hold. However, this needs to be acknowledged by the wider population, which can be achieved through education and awareness raising programs or campaigns.
Most diseases that require long and expensive curative care or treatment are different kinds of cancer, the Human Immunodeficiency Virus (HIV) and the Acquired Immune Deficiency Syndrome (AIDS), as well as tuberculosis (Clemens et al. 2007, 174; Pampallona and Bollini 2004, 172-176). These diseases are treatable with higher success chances if they are recognized or discovered at an early stage. The later someone finds out that they are suffering from these diseases, the more difficult it becomes to actually treat them successfully. Screenings for such diseases or regular overall health checks are expensive and time-intensive and can rarely be found in developing countries, leaving many people to be diagnosed too late. The difference between a lack of screenings, general health checks, the actual treatments and the lack of palliative care options are due to different causes. While curative care requires expensive methods, technology and highly educated staff, palliative care is not unavailable due to lacking (financial) resources. Most issues in palliative care are related to social stigmas which connect most drugs that can help with pain relief with a fear of drug addiction (Flanagan 2019). As Meg O’Brien, director of the Global Access to Pain Relief Initiative words it: “There isn’t a single government that couldn’t procure morphine if they wanted it, but no one is demanding it.” (Lamas and Rosenbaum 2012, 199).
Considering that the need for palliative care is immense and that the structures that palliative care systems can set in place potentially benefit future diagnoses of new cases (Crane 2010, 1613), the idea of investing resources in palliative care seems logical and practical. However, criticisms of the idea that palliative care would be installed before curative care are that the available funds should go into curing people rather than ‘helping people die more comfortably’. As a reply to this criticism, a case study from Kerala, India, shows how palliative care can be provided with few resources, building a structure that also ended up helping to identify people who need palliative care in the first place (Clemens et al. 2007, 173; Lamas and Rosenbaum 2012, 200). In Kerala, a grassroots movement built up the different local structures that provide the identification of potential patients, and then a more general system to plan the treatment for these people. Although this system is based on small local communities and local mechanisms, overall it provides services and assistance to a population of around 15 million people. The people within the Neighborhood Network in Palliative Care (NNPC) emphasize the importance of their local structures and mechanisms, as the people involved know and understand the local context, making it easier to access relevant information from the communities. Such structures, once they are built, can also help with finding people who need curative care and provide a network for the local communities to reach out in cases of disease. Investing resources in such a project may at first only be targeted at palliative care, but will help with providing healthcare infrastructure and systems for curative care in the future.
Another reason to invest in palliative care first is that it is so affordable. Curative care is expensive, it requires so many resources that it is a struggle for all parts of the population to get access, even in ‘developed’ countries such as the United States, let alone for populations in countries that have not established widespread healthcare infrastructures yet. Establishing palliative care can work in different ways to achieve much improvement in different aspects of developing these healthcare structures. If palliative care is also provided through education, these “sustainable and future-oriented” educational systems can be used for curative care at a later point of time (Clemens et al. 2007, 174; Kordzaia 2011, 541). In this sense, palliative care can pose as a double investment to a certain extent. Given that it is also the cheaper option of both, and at least feasible for these countries to establish, the remainder of funds can still be invested in other mechanisms that could help with earlier diagnosis, such as screenings, preventive healthcare programs, or education about common diseases and their symptoms in order to use the locally provided structures for an improvement of conditions for the curative disease patients as well.
The main intention of establishing access to palliative care in the Global South is to reduce suffering of patients and their families and to raise their quality of life on both, physical and psychological, levels. There are also some unintended consequences of either establishing and normalizing palliative care treatments or not doing so, including the creation of systems and mechanisms for palliative care that can lay a ground for other projects, as discussed earlier. There are also other consequences that require personal fieldwork and experience in order to be discovered.
In A Companion to the Anthropology of Death, Ruth J. Prince writes about Kenyan children with cancer, who often come in too late for the diagnosis to still benefit from chemotherapy (Prince 2018, 445-460). She lays out several problems within the healthcare system and the non-governmental organizations that provide the medication for the children to be treated, for example including long waiting times when matters are urgent. Aside from faults connected to long response times, a lack of organization or funding, Prince illustrates vividly how these children suffer from the lack of palliative care. These children and their families have little privacy and see how the other children are in pain or in several cases die. What happens in this Kenyan hospital is a specific case, however, some mechanisms can be examined and compared to other similar countries and hospitals. Apart from the visible need for palliative care for these children who are in this immense pain for long stretches of time, another problematic process is witnessed by Prince several times. Many parents and relatives bring their children into the hospital as their last place of hope. For many children it means that they get a diagnosis when they are already suffering from an advanced stage of the disease and curative treatment will be unsuccessful. The physicians, doctors and nurses, in this hospital know that, but despite knowing so still let the children go into chemotherapy. Similar reactions of doctors and nurses could be seen when treatment turned out to not help the specific child. The reason for acting this way was the distress of the families if nothing at all was done (Prince 2018, 449-450). The lack of palliative care led to physicians starting or continuing chemotherapy when it was predictable that it would not help the children anymore in various cases. This creates a double-sided problem: On the one hand, children who get treated despite not needing chemotherapy suffer great pain and receive aggressive treatment despite not being able to get better, and on the other hand, expensive resources are invested in patients who do not benefit from them, when these same resources could be used for either different medication, different means, or different people. Informing citizens about and normalizing palliative care treatments can prevent such unintended consequences.
The space and presence that palliative care should have in healthcare systems of countries in the Global South is difficult to discuss. There is a dangerous narrative present that represents the fear of inadequate treatment and the fear of palliative care being seen as a solution for all patients, even ones who could benefit from curative treatment. However, other aspects of palliative care in practice seem to outweigh the fear of such a narrative to spread. Palliative care is needed for an increasing number of people and building up the structures for palliative care systems can benefit future efforts to create structures for curative and preventive healthcare systems. Unintended side effects or consequences can also include advantages, such as using resources appropriately and making more adequate decisions in patient care. Trying to implement actual changes opens up further research questions: How can palliative care be provided in a sustainable way (Callaway et al. 2007, 512-513)? How can governments avoid the dangerous narrative that they are not prioritizing curative health enough? What are ways to effectively use palliative care systems’ structures in order to establish systems for curative and preventive healthcare? Scholars so far have indicated that teaching palliative care through education with a focus on small and local communities is a helpful and sustainable way to establish functioning care systems and destigmatize the pain relief drugs in the broader population (Pampallona and Bollini 2004, 176-180). The interest for more research on palliative care in developing countries is increasing, as most research on palliative care so far is conducted in the Global North, although most people live and die in the Global South (Ddungu 2011, 733-734; Pampallona and Bollini 2004, 180).
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