Increasing the Quality of Life of Terminally Ill Patients

Theme

The underlying theme of this research will be that of the ways that quality of life can be increased even in situations where it might seem impractical, or perhaps even impossible, to do so. This means that there will need to be a large amount of analysis into some of the smaller elements that can be observed within the themes here. Of course, this research will focus on terminally ill patients, and the numerous ways in which their quality of life can be increased. There are a number of different avenues that can be used to accomplish this, yet the theme here will remain the maximization of comfort and quality of life in difficult circumstances in general, not just for those who are terminally ill.

Problem Statement

Terminally ill patients oftentimes experience a sharp decline in quality of life. Research must be conducted to demonstrate how this can be increased.

Objectives

Throughout this investigation and analysis: three key objectives will emerge. The first is simple: to better understand the machinations that can increase quality of life on a more general level. The second objective is to discover ways to increase awareness and response to lapses of quality of life for these terminally ill patients. Third, the research will attempt to elucidate the ways that quality of life can be improved through more specific means, such as processes that can be implemented that will specifically be designed to increase quality of life. These objectives will each serve to address a different unique facet of these quality of life issues, but at the same time, they will combine in order to better create a more unified and practical set of solutions that will lead to long-term success.

Questions of Investigation

Similar to the three objectives here, there are also three key questions that need to be posed in order to better understand the overall direction of this research. The first question is also relatively simple: what can be done to improve quality of life care for terminally ill patients that has not already been done? This will serve to ensure that the research is not redundant or otherwise impractical. The second question will take a diametrically opposed approach. It will ask: what are some of the most common pitfalls that are utilized on terminally ill patients that not only fail to increase quality of life for them, but could actually be decreasing it? Indeed, this particular element is one that will ensure that much of the research that will be examined here will remain relevant even for years to come. Lastly, the third question will ask what specific elements need to be included within quality of life care for those who are terminally ill, compared to those who are not? In examining this question, as well as the other two questions, it will become more apparent what must be done.

Introduction

The underlying reason for this investigation is relatively simple. There is a clearly observable lack of research within the field of end of life care in general. This is likely the result of many doctors and researchers not feeling it prudent to devote as many resources toward this research as for those who have longer to live. For this reason, there are a number of specific areas in this regard that can and should be examined. One of the most glaring and obvious of these is the ways that quality of life can be improved for those patients who are terminally ill. Although there has been a fair amount of research on the topic, there are nonetheless a large number of specific facets and characteristics of this care that continue to elude researchers, and these are the specific elements that need to be examined the most.

The investigation will, perhaps even more importantly, address what should not be done within the purview of end of life care. This is because there is already a large amount of misinformation surrounding what should, and should not, be done, with much of this information contradicting itself. Naturally, this has the potential to lead to a large amount of confusion, and the end result here is that there will be many patients who will suffer unnecessarily because the proper procedures and protocols were not followed. Of course, there will always be treatments that are not advisable or otherwise unprofessional, but in taking a more proactive approach, this research will hopefully be able to elucidate some of the most common of ways that these sorts of problems and pitfalls make themselves manifest. At the same time, it will also be made more obvious just how it is possible to positively impact quality of life for those patients who are terminally ill. These steps will primarily be general in nature, and yet, at the same time, there will be some commonalities, even within very different treatment plans, that will allow for more concrete and practical answers to be gleaned. One specialist that will be cited here is that of Dr. Areej El-Jawahri, MD. This specialist examines the ways that quality of life can be improved in patients that have advanced forms of cancer, and in doing so, looks at what can be considered to be some of the most difficult cases here.

Annotated Bibliography

El‐Jawahri, A., Traeger, L., Park, E. R., Greer, J. A., Pirl, W. F., Lennes, I. T., ... & Temel, J. S. (2014). Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer, 120(2), 278-285.

This article takes a close look at the numerous ways that quality of life can be improved in patients that have advanced forms of terminal cancer. This article is unique in that it takes a distinctly psychological examination of the issue, finding that providing an accurate prognostic understanding is actually counter-intuitive when it comes to increasing quality of life, and that providing adequate levels of psychosocial support are a much more direct means of improving quality of life for patients (El‐Jawahri, Traeger, Park, Greer, Pirl, Lennes, & Temel, 2014). Furthermore, this source also examines perceptions that the patients themselves have in regards to their own disease, especially as it relates to whether or not their cancer is curable. The study found that approximately half of all of the patients believed, incorrectly, that the advanced form of cancer that they had was curable in some way, which naturally would lead to lower quality of life once they were informed of the truth (El-Jawahri et al, 2014). Lastly, the source also points to the importance of reducing anxiety as a direct correlation with quality of life, which is why this source takes such a heavily psychological angle with regards to improving quality of life (El-Jawahri et al, 2014).

Wright, A. A., Zhang, B., Keating, N. L., Weeks, J. C., & Prigerson, H. G. (2014). Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: Prospective cohort study. BMJ, 348, g1219.

The article here takes a slightly different approach than most of the other literature here. More specifically, the article takes a look at the ways that chemotherapy is used for terminally ill patients, especially when it comes to the ways that this chemotherapy can inhibit quality of life. The article states that when chemotherapy is used on patients who are terminally ill, they experienced an increased risk of undergoing a cardiopulmonary resuscitation, mechanical ventilation, or even death, in the most serious of cases (Wright, Zhang, Keating, Weeks & Prigerson, 2014). This is particularly important because it helps to demonstrate some of the most common pitfalls that doctors will experience with regards to end of life care. This article also looks at some of the ways that patients who received palliative chemotherapy actually experienced a relatively sharp drop in their chances to die in their preferred place, further degrading quality of life (Wright et al, 2014).

Lee, K. C., Chang, W. C., Chou, W. C., Su, P. J., Hsieh, C. H., Chen, J. S., & Tang, S. T. (2013). Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients. Journal of palliative medicine, 16(6), 632-637.

This article takes a more global approach to the examination of end of life care for terminally ill patients. More specifically, the article examines the ways that Taiwanese families deal with the burdens and pains of end of life care for these sorts of patients. The article states that the caregiving burden, in general, actually did not increase as the patient neared their death, and the family caregivers actually saw extremely high rates of burden with greater amounts of symptomatic distress (Lee, Chang, Chou, Su, Hsieh, Chen & Tang, 2013). This is especially problematic when it comes to solutions for end of life care for these patients because of its prominence. According to this same source, cancer is the leading cause of death in Taiwan, and has been for 28 consecutive years (Lee et al, 2013). This actually accounts for approximately 28.4 percent of the total deaths in 2010 (Lee et al, 2013). Naturally, this means that there must be greater amounts of attention placed on the parts of researchers for how this end of life care can be improved from a global standpoint.

Jensen, W., Bialy, L., Ketels, G., Baumann, F. T., Bokemeyer, C., & Oechsle, K. (2014). Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis. Supportive Care in Cancer, 22(5), 1261-1268.

This next source is important because it takes a look at the role that physical exercise, as well as physical therapy in general, plays when it comes to these terminally ill cancer patients. This is a particularly interesting perspective because exercise is usually seen as something that will only exacerbate existing problems and symptoms that these patients are having, when this is not necessarily the case. In fact, the source finds that physical exercise as well as physical therapy both were feasible in more than ninety percent of terminally ill patients for whom it had been offered (Jensen, Bialy, Ketels, Baumann, Bokemeyer & Oechsle, 2014). This helps to demonstrate how there are many solutions, some of which might seem unconventional or impractical at first glance, that are actually extremely useful and beneficial for improving quality of life for these terminally ill patients. Furthermore, the article states that "Physical exercises, relaxation therapy, and breathing training were the most frequently applicable methods" (Jensen et al, 2014, p.1261). Essentially, this means that these sorts of physical treatments are effective not necessarily for their concrete and physiological health benefits, but rather because they allow for these terminally ill patients to be able to be more active, thereby enjoying the limited time they have more efficiently.

Nava, S., Ferrer, M., Esquinas, A., Scala, R., Groff, P., Cosentini, R., ... & Grassi, M. (2013). Palliative use of non-invasive ventilation in end-of-life patients with solid tumours: A randomised feasibility trial. The lancet oncology, 14(3), 219-227.

More practical solutions are oftentimes necessary and, what's more, many of these practical solutions must oftentimes approach the issue in more minute ways. This article is one such example of this. According to the authors here, increasing quality of life for these terminally ill patients can be done with one key step: utilizing what is known as non-invasive mechanical ventilation, or NIV (Nava, Ferrer, Esquinas, Scala, Groff, Cosentini & Grassi, 2013). This particular step is important because it serves as an alternative to oxygen therapy, and as a result, is more efficient at decreasing the number of cases of dyspnoea as well as the amount of opiates that are needed to ensure that the patients are comfortable during the end of their lives (Nava et al, 2013). Furthermore, this same source also looks at some of the ways that NIV can be implemented in a larger number of scenarios, stressing the need for not just further research on this subject, but also more widespread acceptance of the merits of NIV from this particular perspective (Nava et al, 2013).

Montoya-Juarez, R., Garcia-Caro, M. P., Campos-Calderon, C., Schmidt-RioValle, J., Gomez-Chica, A., Marti-García, C., & Cruz-Quintana, F. (2013). Psychological responses of terminally ill patients who are experiencing suffering: A qualitative study. International journal of nursing studies, 50(1), 53-62.

This article takes a closer look at the more psychological side of these terminally ill patients. More specifically, it examines the concept of suffering within these terminally ill patients, what constitutes suffering, and whether or not there are any practical solutions that can be implemented to ease this suffering in any way. According to this source, nurses have the ability to ameliorate some of the most egregious of cases of suffering by controlling the symptoms, encouraging feedback and response on the part of the patient, promoting feelings of satisfaction for the patients, and by being upfront and transparent about the information that is being provided to the patient (Montoya-Juarez, Garcia-Caro, Campos-Calderon, Schmidt-RioValle, Gomez-Chica, Marti-García, & Cruz-Quintana, 2013).These elements might seem like common sense, but what was particularly disturbing about the findings of this study was the ways that many seemed to discard these sorts of findings, instead favoring more simple approaches that simply keep the patients numb and, for all intents and purposes, comfortable. This source emphasizes the need for additional research into just what makes these terminally ill patients happy.

Literature Review

The literature here all points to the need for greater amounts of awareness with regards to the purview of ameliorating symptoms within those who are terminally ill. From a closer look at the literature, it becomes evident that one of the key problems here is simply that removing these symptoms requires a large amount of diagnosis and treatment and, as was stated earlier, many doctors simply do not feel that this is worth the investment. The literature, though, shows that there are some steps that can be taken that would hardly require any of these sorts of investments at all, but would bring about massive improvements for quality of life for these terminally ill patients. As one of the sources pointed out, simply improving the mechanical ventilation systems for these terminally ill patients goes a long way toward massively improving their quality of life. What is important about this literature, in particular, is that its benefits and underlying conclusions can be extrapolated to apply to a number of other individual elements within the purview of this end of life care.

Another important dimension of this end of life care is that of the numerous ways that doctors, and nurses, perhaps even more importantly, can take more psychological and, some would argue, informal measures to increase the quality of life of these terminally ill patients. Indeed, as some of the research helped to demonstrate, even just talking and listening to these patients, as well as encouraging them to be more open about their pain, be it physical or psychological, goes a long way toward improvement of quality of life. It seems, then, that taking a more simplified approach is actually beneficial in a number of these different scenarios simply by virtue of the way that this approach can leverage the overall emotions and feelings of the terminally ill patient in order to come up with a plan to increase their quality of life that will be minimally invasive, extremely efficient from a resources perspective, and will see reasonable degrees of effectiveness.

Much of the research and literature here focused on some of the ways that end of life care could be improved through more niche methods. For instance, one of the works of literature here examined this end of life care from the perspective of Taiwanese caregivers. Although these sorts of examples might appear to not be relevant within the contemporary medical sphere, nothing could be further from the truth. In reality, these sorts of articles are extremely important because they serve as litmus tests, of a sort, that can be leveraged in order to improve quality of life for these terminally ill patients unilaterally. Furthermore, many of these sources examine some of the most specific methodologies here, and each of these methodologies contributes something new and different toward the overall ecosystem of solutions that can be leveraged in order to increase quality of life for these terminally ill patients. This is not to say that there should be a unified set of solutions that should be created, but rather for there to constantly be some degree of subjectivity here that can be used as a means of adopting a greater amount of flexibility.

Of course, there are also a number of sources who take the opposite approach and advocate for more rigid and, they would argue, effective solutions for improving end of life care for these individuals. This is not to say that this approach is incorrect in any way, but rather that the overall applicability of these sorts of solutions is much more limited, in the grand scheme of things, than those that adopt the more flexible sets of solutions. This also means that there will no doubt be a large number of cases wherein it is unclear whether a more rigid or more flexible and subjective methodology should be used here. Again, as was alluded to in some of the earlier research, it is possible to utilize some past cases in order to come to a better idea of what can and should be done here. This means that the process of improving the quality of life for terminally ill patients is something that is actually an ongoing process, with new methodologies being developed.

The key problem here, then, is that there is not enough agreement about how best to go about this, and as a result, it seems that there are an unfair number of people who are terminally ill in some way who are suffering because they are not able to receive the proper care they need, even if doing so would actually be a simple affair. Furthermore, much of the literature that has been examined here has taken a more practical look at these sorts of issues, and, in the process, has found that there are actually a large number of different issues as they relate to the manner in which this end of life care is actually carried out. It seems that because of the terminally ill nature of many of these patients, doctors, in general, seem to be more willing to take risks and generally disregard the long-term health of the patients here. This, of course, is unacceptable, especially when it leads to increased amounts of pain and suffering for these patients. What's more, many of these patients could be aided with relatively simple steps that are taken, but because of the overall lack of research, as well as a number of hurdles and solutions that exacerbate the issue, they do not receive the care they need.

Conclusion

As this research has demonstrated, there are a number of underlying problems with regards to the ways that end of life care is given out for these terminally ill patients. It seems, moving forward, that there will need to be greater amounts of emphasis placed on researching more concrete ways that can aid these patients. At the same time, though, quality of life can oftentimes be a difficult concept to truly quantify, and it seems that identifying this in a more coherent and practical way has led to a great deal of confusion and argumentation that further muddies these issues. There must be more research conducted to help elucidate many of these concepts that were examined here.

References

El‐Jawahri, A., Traeger, L., Park, E. R., Greer, J. A., Pirl, W. F., Lennes, I. T., ... & Temel, J. S. (2014). Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer, 120(2), 278-285.

Jensen, W., Bialy, L., Ketels, G., Baumann, F. T., Bokemeyer, C., & Oechsle, K. (2014). Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis. Supportive Care in Cancer, 22(5), 1261-1268.

Lee, K. C., Chang, W. C., Chou, W. C., Su, P. J., Hsieh, C. H., Chen, J. S., & Tang, S. T. (2013). Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients. Journal of palliative medicine, 16(6), 632-637.

Montoya-Juarez, R., Garcia-Caro, M. P., Campos-Calderon, C., Schmidt-RioValle, J., Gomez-Chica, A., Marti-García, C., & Cruz-Quintana, F. (2013). Psychological responses of terminally ill patients who are experiencing suffering: A qualitative study. International journal of nursing studies, 50(1), 53-62.

Nava, S., Ferrer, M., Esquinas, A., Scala, R., Groff, P., Cosentini, R., ... & Grassi, M. (2013). Palliative use of non-invasive ventilation in end-of-life patients with solid tumours: A randomised feasibility trial. The lancet oncology, 14(3), 219-227.

Wright, A. A., Zhang, B., Keating, N. L., Weeks, J. C., & Prigerson, H. G. (2014). Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: Prospective cohort study. BMJ, 348, g1219.