Introduction
Palliative care is a multidisciplinary field that specializes in providing relief and assistance to people with life-limiting conditions. In most cases, palliative care is provided to patients with untreatable conditions. Thus, its main objective is the improvement of the patients’ quality of life rather than the curative effect. Life-limiting conditions are associated with a wide array of adverse effects that are detrimental to patients’ comfort, autonomy, esteem, and dignity. Some of these effects are physiological whereas others stem from the psychological and emotional implications. To address these considerations, palliative care utilizes a range of pharmaceutical and non-pharmaceutical means that minimize the adverse effects and provide necessary relief.
However, despite the recognition and adoption, several issues can still be identified in the field. Some shortcomings can be attributed to insufficient allocation of resources and a lack of understanding of the practice. Besides, a distorted public and professional perception of the concept of life-limiting illnesses complicate care delivery and compromise its efficiency. Finally, insufficient institutional support is at least partially responsible for the ineffectiveness of palliative care. The following paper provides an overview of problems in palliative care associated with life-limiting conditions, highlights policies and initiatives put forward as attempts to address them and discusses the most common pharmacological and non-pharmacological treatments currently available to nurses and clinicians involved in the field.
Prevalence of the Health Problem
The main focus of palliative care is in patients with various life-limiting conditions. The conditions include cancers, Alzheimer’s disease, chronic obstructive pulmonary disease, congestive heart failure, and amyotrophic lateral sclerosis, among others. It is important to understand that such a definition does not narrow down the list to a specific range of medical diagnoses – instead, it includes all conditions that have the potential to be a direct cause of death. In such a setting, the relief of symptoms is among the highest priorities of palliative care. Therefore, it would be reasonable to discuss the prevalence of symptoms of life-limiting illnesses.
One of the most recognizable symptoms associated with the majority of life-limiting conditions is pain. According to a study by Doherty et al. (2017), more than 70 percent of the patients suffering from advanced life-limiting illnesses reported experiencing pain during the treatment process. More than half of the sufferers (51.3%) described the pain as “constant,” whereas 27.9% reported being in pain almost every day (Doherty et al., 2017). Only a fraction of the studied population (4.5%) experienced pain once a month or less often (Doherty et al., 2017). The pain was characterized as severe in the majority of cases (62%), followed by moderate (24%), and mild (13%) (Doherty et al., 2017).
It should be noted that the overwhelming majority of patients received some treatment expected to relieve the condition. However, the treatment in the case of end-of-life illnesses does not necessarily reduce pain to acceptable levels. According to Doherty et al. (2017), 40% of the patients still considered pain severe after the treatment, with an improvement to moderate from 24 to 33 percent, and in mild from 13 to 26 percent. While there is an observable improvement, it is safe to say that a considerable proportion of the population receives no relief from available treatments.
In addition to pain, life-limiting illnesses are associated with a range of other symptoms detrimental to patients’ quality of life. These symptoms include loss of appetite (23%), fever (20%), abdominal symptoms (17%), insomnia (15%), nausea (15%), and headache (14%) (Doherty et al., 2017). Similarly to the dynamics demonstrated in pain relief, the observed symptoms were only partially relieved by treatment, with a reduction in severity from 64% to 35% and a consequent increase from 7% to 27% in the mild category (Doherty et al., 2017). At this point, it is worth pointing out that the dynamics of life-limiting illnesses differ depending on the type and severity of the condition. Thus, it is possible to expect a different distribution pertinent to individual cases. Nevertheless, it is reasonable to conclude that the observed prevalence of the problem constitutes a significant detriment to the population’s quality of life.
Relevant Resources
Palliative care is a multidisciplinary field that encompasses multiple agencies and specialists. Thus, it requires significant resource allocation to ensure effective care delivery. To address this need, a range of establishments have been created aimed specifically at the relief from symptoms and quality of life improvement. The most widely recognized ones are hospices and aged care homes – the facilities that provide treatment to terminally ill and chronologically ill patients and those experiencing difficulties with daily tasks due to aging. These organizations utilize palliative care principles as part of their activities, mostly for addressing the adverse physical and emotional outcomes of their patients’ conditions. In some cases, dedicated palliative care units are established, aimed specifically at the relief of distressing symptoms and improvement of the psychological and emotional state of the impacted population. Finally, certain healthcare providers allocate resources for the delivery of palliative care at home for patients who are reluctant to move to a different facility.
To further improve the effectiveness of palliative care, several initiatives have been put forward by various entities. For instance, it was suggested to support the career development of palliative care educators through career development awards and introduce enhancements to licensing procedures, thus increasing the professional level of clinicians and nurses. Next, accessibility of services could be improved by issuing a policy initiative of mandatory inclusion of non-hospice palliative care by medical homes and a palliative care program consistent with the current consensus. Finally, the evidence base pertinent to the condition can be improved through the allocation of budget to the research of the comparative effectiveness of currently known practices as well as the establishment of a dedicated research office and specific research-funding mechanisms.
Existing Barriers to Palliative Care
Despite significant effort and resources allocated to palliative care, several issues remain unaddressed. It should be noted that a significant proportion of the issues are related to the perception of treatment and, as a result, are psychological and emotional in nature. For instance, it has been pointed out that the nationwide campaigns against certain life-limiting illnesses, such as cancer, utilize wording that frames the conditions as external entities that can be overcome, which distorts the understanding of its underlying mechanisms related to internal mutation of tissue (Patel & Kruczynski, 2015). Thus, the patients may perceive the illness as an antagonistic entity that needs to be faced in a confrontation and conquered. While it does not alter the course of treatment, it has an adverse psychological effect on patients whose treatment is unsuccessful, since, according to their perception, they are losing the fight (Patel & Kruczynski, 2015).
The situation is further exacerbated by the pursuit of irrelevant outcomes that do not improve patients’ quality of life, such as marginal extensions of life expectancy. In many instances, this approach has a twofold detrimental effect. First, it creates a significant financial burden due to the expenses associated with pharmacological treatments and, by extension, harms the patient’s family. Second, it reduces the comfort of the patient’s environment, creating a constant pressure of imminent death. This perception runs contrary to one of the fundamental principles of palliative care, according to which death is a natural and intrinsic element of existence that should be faced in a comfortable environment.
The same skewed perception is observed among some clinicians involved in the care delivery process. Depending on the outcome or progression of treatment, they may be tempted to perceive them as winners or losers, which introduces an egoistic perspective and distorts the fundamentals of care. In other words, the emotional and psychological aspects of palliative care can be under-addressed or neglected completely in favor of measurable metrics that do not necessarily improve the quality of life.
Literature Review
From the information presented in previous sections, it becomes apparent that the psychological implications of life-limiting conditions require an in-depth inquiry. As was briefly mentioned above, pain is responsible for a significant proportion of problems and adverse health effects associated with the issue. Many patients describe pain relief as a priority in the palliative care process, with freedom from the pain being the ultimate goal (Knaul, Farmer, Bhadelia, Berman, & Horton, 2015). In many cases, pain can be mitigated relatively efficiently with the help of pharmacological means. Nevertheless, many patients report the lack of a perceived relief even with medications applied, mostly due to the imminence of death (Knaul et al., 2015).
The second significant effect associated with the issue is the occurrence of depression among the impacted individuals. At least half of the people with life-limiting diseases exhibit signs that are consistent with the diagnosis of a psychiatric disorder. Psychological distress is another commonly reported outcome, observed in the majority of the population. Certain diseases, such as cancer, HIV, and/or AIDS, display a particularly strong relationship to suicidal thoughts (Jaiswal, Alici, & Breitbart, 2014). Accompanying conditions include the feeling of exhaustion, delirium, and hopelessness. Further aggravating the condition is the feeling of anxiety that, combined with depression, leads to progressive loss of appetite, inability to get out of bed, and a perceived loss of control (Jaiswal et al., 2014). The described condition can be easily misdiagnosed due to the similarity of its manifestation with mood disorders that are expected to occur in the population segment. Finally, the treatment of symptoms of a life-limiting disease can produce neurovegetative symptoms of depression, including poor concentration, fatigue, guilt, sleep disturbance, and anhedonia (Jaiswal et al., 2014). The cumulative effect of these symptoms is the reduced capacity for coping with the condition and treatment procedure compliance.
Another determinant of efficient palliative care is the capacity for coping with the condition daily. Coping is measured by the ability of patients to demonstrate flexibility, determination, resourcefulness awareness, optimism, and psychological resilience in the treatment process. According to the findings available in the literature, a certain proportion of the population resort to defensive responses when confronted with the diagnosis (Patel & Kruczynski, 2015). The most common manifestations are denial, avoidance, isolation of affect, and noncompliance with treatment, among others (Dumanovsky et al., 2016). In extreme cases, such an approach leads to the decreased effectiveness of treatment, either due to a disagreement between a patient and a physician or after the negligence and delay of treatment. The latter factor constitutes a major barrier to treatment, as noncompliance remains one of the strongest modifiable risk factors responsible for its success.
Next, it is important to acknowledge the impact of the condition on the respect and esteem of the sufferers. Management of life-limiting conditions is known to require the involvement of numerous health care professionals and, in some cases, necessitates the admittance to a specialized palliative care unit. Both changes are associated with an observable loss of autonomy and increased dependence on health care personnel. The reaction is further exacerbated by medical uncertainty, (actual or perceived limitation in awareness of the course of treatment and progression of the disease). The combined effect of these factors is the decline in esteem, personal dignity, and respect (Leget, 2013). In certain instances, the illness may lead to the deterioration of physical appearance, which can aggravate the effect (Leget, 2013). In combination with the depression identified above, the issue may undermine the patient’s determination to participate in treatment and, in extreme cases, increase suicidal intentions.
Finally, it is important to identify the issue of control as an important issue in palliative care. The decline in autonomy and independence identified above combined with the decreased quality of life can create a perception of the loss of control over one’s life. In this scenario, suicide can be considered a positive outcome as a way of controlling the circumstances of one’s death. This concern is especially aggravating as it creates a false perception of self-esteem, which makes it especially difficult to overcome by care providers.
Pharmacological and Non-Pharmacological Treatments
As was discussed in the previous sections, pain management remains the most significant issue in palliative care. While the initial life-limiting conditions, such as cancer and HIV, are addressed primarily through complex pharmacological interventions, pain management can be done through a combination of medications with non-pharmacological means. Admittedly, the former is currently considered more effective and is thus preferred by clinicians and nurses. The most common medications used for the purpose are opioids. This group of pharmacological treatment remains the most effective method available to the palliative care professionals due to their effectiveness, ease of administration, safety, and immediacy of effect (Puntillo et al., 2014). However, both the patients and the clinicians express concerns regarding their use in palliative care. The most apparent reason for this is the high addictiveness characteristic of the medications, as well as the effects of tolerance and dependence associated with them.
While these concerns are not entirely unfounded, it is important to point out that popular perception uses a distorted perspective. For instance, both tolerance and dependence are real effects created by the need for an effective and consistent pain relief method. Nevertheless, they are falsely attributed to the formation of addiction, thus negating their benefits. In some cases, patients refuse opioid treatment, assuming that the adverse effects would negate the benefits of pharmacological treatment.
At this point, it is necessary to admit that opioid-based pain relief can produce adverse effects. However, this mostly occurs as a result of negligence or inappropriate use of the medication by clinicians (Puntillo et al., 2014). On the other hand, the current knowledge in the field of opioid pharmacology offers reliable, evidence-based guidelines on specificities of administration, dosage, avoidance of complications, and rotation of medications sufficient for minimizing their adverse effects to a permissible level (Puntillo et al., 2014). Therefore, the use of opioids can be undesirable in some cases, such as for well-informed patients who are aware of the implications of their decision. However, in the majority of cases, it remains among the most viable options for addressing the issue of pain relief in palliative care.
In addition to medications, palliative care utilizes a range of non-pharmacological treatments to enhance pain relief and improve the emotional and psychological state of the patients. One of the most widely utilized solutions is patient education. The availability of resources and openness of the information regarding the progression of the condition is crucial for improving the patient’s emotional state and allows strengthening the feeling of control, independence, and empowerment, which are major determinants of the psychological state of the sufferers. Also, it facilitates involvement in the treatment process and, as a result, improves treatment outcomes.
The second major non-pharmacological component is psychosocial therapy. Psychological, spiritual, and emotional assistance provides a necessary relief both for impacted patients and their families. Besides, in the case of group counseling, it establishes supportive social ties beneficial for the patient’s emotional state and reduction of adverse effects such as depression.
Next, depending on the type of condition, it is possible to utilize lifestyle modifications such as regular physical exercise and a healthy diet. These approaches provide necessary improvements for the rehabilitation process, improve patients’ coping capacity, and minimize mood disorders associated with most of the life-limiting conditions. Most importantly, both healthy dieting habits and regular exercise are known to be strongly associated with empowerment and better control of life, both of which are desirable effects in palliative care. It should be emphasized that the latter approach is not universally applicable due to restrictions posed by certain conditions.
Conclusion
As can be seen from the information above, palliative care is a highly diverse field, both in terms of included disciplines and the quality of its services. On the one hand, the physiological mechanisms behind life-limiting conditions are well understood, and pharmacological treatments for most of them are accepted both by healthcare providers and the general public. On the other hand, the psychological and emotional aspects of care delivery are in the phase of active development. For this reason, the uniformity and acceptance of the latter are noticeably lower. The situation is further exacerbated by the popular perception of life-limiting conditions as antagonistic external entities that need to be challenged, a perspective that is detrimental both for patients and healthcare professionals.
For nursing practitioners, it is possible to address the situation on several levels. On the individual level, nurses involved in palliative care should promote responsible treatment practices that would improve the effectiveness of pharmacological treatment, particularly the opioid medications, while at the same time reducing the adverse effects. At the same time, it is recommended to collaborate with clinicians to promote psychological, emotional, and spiritual aspects of care. On the level of organization, it is possible to address the issues by modifying the environment and conditions of care delivery to eliminate the discomfort and promote autonomy through patient involvement. Finally, on an institutional level, it is necessary to establish policies that would improve educational and career opportunities for palliative care professionals. With these changes in place, it is reasonable to expect improvements in the care delivery process and, by extension, an increase in quality of life in the impacted population.
References
Doherty, M., Khan, F., Biswas, F. N., Khanom, M., Rahman, R., Tanvir, M. M. I.,… Ahmad, N. (2017). Symptom prevalence in patients with advanced, incurable illness in Bangladesh. Indian Journal of Palliative Care, 23(4), 413-418.
Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier, D. E., & Morrison, R. S. (2016). The growth of palliative care in US hospitals: A status report. Journal of Palliative Medicine, 19(1), 8-15.
Jaiswal, R., Alici, Y., & Breitbart, W. (2014). A comprehensive review of palliative care in patients with cancer. International Review of Psychiatry, 26(1), 87-101.
Knaul, F. M., Farmer, P. E., Bhadelia, A., Berman, P., & Horton, R. (2015). Closing the divide: the Harvard Global Equity Initiative–Lancet Commission on global access to pain control and palliative care. The Lancet, 386(9995), 722-724.
Leget, C. (2013). Analyzing dignity: A perspective from the ethics of care. Medicine, Health Care and Philosophy, 16(4), 945-952.
Patel, K., & Kruczynski, M. (2015). Palliative and end-of-life care: Issues, challenges, and possible solutions in the United States. The American Journal of Managed Care, 21(6), 195-196.
Puntillo, K., Nelson, J. E., Weissman, D., Curtis, R., Weiss, S., Frontera, J.,… Mulkerin, C. (2014). Palliative care in the ICU: Relief of pain, dyspnea, and thirst – a report from the IPAL-ICU Advisory Board. Intensive Care Medicine, 40(2), 235-248.