Introduction
Effective communication is a crucial component of human activities in the 21st century. Accurate information exchange increases efficiency and quality in all spheres. This point is especially topical in healthcare, as it deals with highly delicate and important aspects of a person’s life. Nowadays, there is a tendency according to which medical practitioners should take into account the patients’ opinions on equal terms with their professional expertise. Advance care planning is a manifestation of the modern trend, as it allows people to share their views on their treatment procedures. This approach is widely used in palliative care, as working with people whose lives are nearing the end poses additional challenges. Nevertheless, particular barriers may impede communication in palliative care, as well as in other types of treatment. The purpose of this paper is to examine advance care planning in terms of palliative care by describing the concept and related impediments.
Palliative Care
Nowadays, the number of people who suffer from lethal diseases is on the increase. The list of such conditions is long and includes multiple nerve and mental disorders, as well as cancer. Cancer is often called the disease of the 21st century, even though its mortality rate is significantly lower than that of cardiovascular diseases (WHO, 2018). Nevertheless, cancer remains a topical issue, as millions of people continue suffering from it worldwide.
Cancer has many forms, and some of them prove to be more lethal or frequent. For example, according to Feletto et al. (2019), colon and rectal cancer has the third-highest incidence rate in Australia, and the numbers have increased over the last decades. Simultaneously, Troeung et al. (2017) state that this disease also attacks the younger population, as colorectal cancer incidence rate has grown for people between 15 and 39. As for children below 15, Youlden et al. (2019) have concluded that the cancer incidence rate among them has been steadily growing since the 20th century. On the other hand, the research by Luo et al. (2018) suggests that, while the lung cancer rate is expected to drop within twenty years, it will remain significant. Several factors contribute to the development of this lethal disease, such as environmental pollution and cancer risk factor exposure. In addition, the technological advancements of the 21st century have entailed new screening opportunities, inevitably leading to a higher number of diagnosed cases.
Overall, this disease rarely develops rapidly, leaving most of its patients with several years to live. Dorothy had also got acquainted with cancer and its consequences before she was diagnosed with it, as her husband had passed several months before the recorded conversation. Toward the end of their life, cancer patients often lose the ability to move and sometimes even to think. Accordingly, such people require additional attention and care, even when the probability of recovery is extremely low. In this case, patients and their families resort to palliative care. As a rule, it is provided for people who are suffering from terminal and life-limiting diseases and have little or no chances of recovery (Palliative Care Australia, n.d.). The purpose of palliative care is to improve the quality of terminally ill patients’ lives during their final months and weeks. Palliative Care (PC) Australia (n.d.) states that its mission is to let “people live their life as fully and as comfortably as possible” despite terminal illnesses (para. 3). Cancer patients, as well as people suffering from other developing conditions, usually need palliative care when the disease reaches its peak stage.
Due to its delicate nature, palliative care should follow a comprehensive set of rules. PC Australia (2018) has published a list of national standards, which must be followed when providing palliative care. The standards emphasize the importance of considering the patient’s needs and experience through an ongoing assessment and a continuous dialogue with the person and their family (PC Australia, 2018). At the same time, the patient-centered nature of palliative care is underlined by PC Australia (2018) in that the patient and their family should receive appropriate and ethical treatment. According to the standards, palliative care should encompass more than just the physical aspect of the patient’s condition and include mental, cultural, social, and spiritual needs (PC Australia, 2018). Aoun et al. (2017) also note that quality palliative care provides adequate psychological support for grieving family members, as well. It is often the bereft relatives who take care of the patient before palliative care specialists intervene, which is why the situation, in general, is heavily stressful for them.
Indeed, terminal conditions are highly exhausting for all parties involved. Maintaining a good quality of life is one of the fundamental principles of palliative care, according to PC Australia (n.d.), and it can be extended to encompass not only the patient but also their carers. Dorothy had to take care of her husband, which caused her significant stress, and she managed to see the situation from another perspective when her cancer spread. According to Alam et al. (2020), caregivers face their risks, as they may have developmental disorders, such as depression. However, a timely introduction of professional palliative care is considered to reduce such risks (Alam et al., 2020). Stress is caused by a variety of factors, many of which are objective and related to the nature of illness and the imminent demise of the patient. On the other hand, patients’ and caregivers’ involvement in the decision-making process would likely alleviate some of the pressure and create a sense of control.
Advance Care Planning
The decision-making process is an integral component of any treatment, but it gains particular importance when it comes to terminal stages. In general, doctors and other medical practitioners remain in control of all treatment-related actions due to their unquestionable expertise. Nevertheless, the 21st century has seen increased attention paid to ethical matters in all spheres, including healthcare. Historically, doctors and nurses acted from the medical point of view, meaning that they followed general principles of their field without considering a patient’s opinion. Such an approach might be justified by the fact that medical professionals have knowledge and experience that their patients do not. However, nowadays the concept of patient-centered care has become an absolute necessity in the area of health services. According to Zhao et al. (2016), the discussion promotes recognition of the patient’s rights as a person. This principle dictates that doctors and nurses should remain attentive to the patient’s needs and wishes, especially those concerning the treatment process. Moreover, a patient’s opinion is to be respected even if it contradicts the doctors’ standpoint.
Generally speaking, patient-centered care provides a patient with the ability to control their treatment. Zhao et al. (2016) refer to this approach as an attempt to empower and reassure the patient, making the process as comfortable and convenient as possible from their point of view. O’Hare (2018) notes that, while patient-centered care is not a controversial concept, it does contradict traditional medical education, which revolved around body systems and diseases, not the patient’s personality. The approach in question poses additional requirements for the medical staff, as they should demonstrate excellent communication skills, including active listening (O’Hare, 2018). Patient-centered care promotes each person’s individuality in terms of treatment planning, bringing positive results. Good mental state and stress reduction are especially important in the cases of terminal conditions. In the recording, Dorothy noted that she was grateful to the nurses who actively listened to her and her wishes, taking them into account. In addition, Grootens-Wiegers et al. (2017) note that today’s medicine promotes patient autonomy in the cases of children and adolescents, as well. Therefore, effective communication becomes the cornerstone of patient-centered care and serves to empower the patient while alleviating the stress.
Advance care planning (ACP) has patient-centered practice at its foundation as its primary objective is to ensure that the patient’s wishes are considered, regardless of his or her current state. The Royal Australian College of General Practitioners (RACGP) (n.d.) states that ACP “is based on fundamental principles of self-determination, dignity, and the avoidance of suffering” (para. 1). Additionally, ACP provides an effective response to the challenges modern medicine and society in general face. The concept of advanced care planning directly deals with the process of healthcare decision-making discussed above. While patient-centered care allows individuals to weigh in on immediate decisions, ACP ensures that their opinion remains considered even following their incapacitation (RACGP, n.d.). The nature of the patients’ decisions may vary and contradict the vision of the medical staff, but it must be taken into account at all stages. For example, Dorothy knew about her heart problems, which is why she does not want cardiopulmonary resuscitation to be performed in her case.
In general, advanced care planning allows people to devise the strategy of their future treatment before they lose the ability to express their opinions. According to the RACGP (n.d.), ACP is the result of quality communication, serving to reflect the person’s values and convictions. Therefore, this concept correlates with the global values of tolerance and diversity, since it promotes the acceptance of others’ views in relation to medical care. As a rule, ACP is used in the cases of end-of-life care for terminally ill patients who want to set the direction of treatment even for the final stages when their condition deteriorates. For example, some people may decide to refuse additional treatment if they believe that it will not lead to recovery or improvement. At the same time, other patients may insist that the doctors continue their attempts even when the situation seems hopeless. The research by Moth et al. (2018) shows that oncologists are likely to discontinue chemotherapy for older patients if they believe that their life expectancy would be too short even without cancer. ACP suggests that medical practitioners should do everything possible to respect the patients’ wishes.
Advance care planning allows patients and caregivers to describe their vision of the treatment and voice their principles and concerns. While effective oral communication is important, it is recommended to document the plan in the written form of an advance care directive. Moore et al. (2019) refer to it as an effective tool serving to guide the doctors following the patients’ loss of decision-making ability. In addition to writing a directive, patients are also recommended to select a substitute decision-maker for the unfortunate scenario. This way, even when the patient loses the capacity to make new decisions and ensure that the advance care directive is followed, there will be actual supervision.
Nevertheless, while the practice of advance care planning corresponds with modern values and promotes patients’ autonomy, it still faces significant obstacles. According to White et al. (2019), the “community prevalence of advance care directives is low despite known benefits” (p. 1261). First, Carter et al. (2015) state that there are particular legal limitations to the use of ACP in Australia. The limitations come from the fact that the related legislation varies across the country, and there is uncertainty as to which person can legally be named a substitute decision-maker. Second, research by Moore et al. (2019) revealed that most doctors see ACP as an opportunity to align treatment with the patients’ views but may be reluctant to adhere to it in practice. Third, Zivkovic (2018) notes that approaching death may force patients to reconsider their past planning. Overall, these obstacles remain significant in the modern setting, preventing ACP from gaining more popularity.
Summary and Conclusion
In conclusion, patients who face terminal illnesses, especially cancer, and their carers experience severe stress. The concept of palliative care serves to mitigate some of the consequences of terminal diseases and improve the patient’s quality of life during the final stages. Overall, today’s medicine promotes patient-centered treatment, meaning that patients’ opinions should be considered when making decisions. Advance care planning relies on that concept, allowing the patients to outline their principles for future planning. Advance care directives should be considered even when the patient loses their decision-making ability, but many doctors hesitate to follow them in critical situations. Additionally, there are other legal and psychological barriers impeding the ACP process. Nevertheless, the concept of ACP correlates with modern values, which is why, with due attention, it can become a significant contribution to society.
References
Advance Care Planning Australia. (n.d.). About Advance Care Planning Australia. Web.
Alam, S., Hannon, B., & Zimmermann, C. (2020). Palliative Care for Family Caregivers. Journal of Clinical Oncology, 38(9), 926-936.
Aoun, S. M., Rumbold, B., Howling, D., Bolleter, A., & Breen, L. J. (2017). Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. PLOS ONE, 12(10).
Carter, R. Z., Detering, K. M., Silvester, W., & Sutton, E. (2015). Advance care planning in Australia: What does the law say? Australian Health Review, 40(4), 405–414.
Feletto, E., Yu, X. Q., Lew, J. B., St John, J. B., Jenkins, M. A., Macrae, F. A., … Canfell, K. (2019). Trends in the colon and rectal cancer incidence in Australia from 1982 to 2014: Analysis of data on over 375,000 Cases. Cancer Epidemiology, Biomarkers & Prevention, 28(1), 83–90.
Grootens-Wiegers, P., Hein, I. M., van den Broek, J. M., & de Vries, M. C. (2017). Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatrics, 17.
Luo, Q., Yu, X. Q., Wade, S., Caruana, M., Pesola, F., Canfell, K., & O’Connell, D. L. (2018). Lung cancer mortality in Australia: Projected outcomes to 2040. Lung Cancer, 125. 68–76.
Moore, N., Detering, K. M., Low, T., Nolte, L., Fraser, S., & Sellars, M. (2019). Doctors’ perspectives on adhering to advance care directives when making medical decisions for patients: an Australian interview study. BMJ Open, 9.
Moth, E. B., Kiely, B. E., Naganathan, V., Martin, A., & Blinman, P. (2018). How do oncologists make decisions about chemotherapy for their older patients with cancer? A survey of Australian oncologists. Supportive Care in Cancer, 26, 451–460. doi:10.1007/s00520-017-3843-0
O’Hare, A. (2018). Patient-centered care in renal medicine: Five strategies to meet the challenge. American Journal of Kidney Diseases, 71(5), 732–736.
Palliative Care Australia. (2018). National palliative care standards. Web.
Palliative Care Australia. (n.d.). Understanding palliative care. Web.
Palliative Care Australia. (n.d.). What is palliative care? Web.
The Royal Australian College of General Practitioners. (n.d.). Advance care planning. Web.
Troeung, L., Sodhi-Berry, N., Martini, A., Malacova, E., Ee, H., O’Leary, P., … Preen, D. B. (2017). Increasing incidence of colorectal cancer in adolescents and young adults aged 15–39 Years in Western Australia 1982–2007: Examination of colonoscopy history. Frontiers in Public Health, 5.
White, B. P., Willmott, L., Tilse, C., Wilson, J., Ferguson, M., Aitken, J., … Feeney, R. (2019). Prevalence of advance care directives in the community: a telephone survey of three Australian States. Internal Medicine Journal, 49(10), 1261–1267.
World Health Organization. (2018). The top 10 causes of death. Web.
Youlden, D. R., Baade, P. D., Green, A. C., Valery, P. C., Moore, A. S., & Aitken, J. F. (2019). The incidence of childhood cancer in Australia, 1983–2015, and projections to 2035. The Medical Journal of Australia, 212(3), 113–120.
Zhao, J., Gao, S., Wang, J., Liu, X., & Hao, Y. (2016). Differentiation between two healthcare concepts: Person-centered and patient-centered care. International Journal of Nursing Sciences, 3, 398–402.
Zivkovic, T. (2018). Forecasting and foreclosing futures: The temporal dissonance of advance care directives. Social Science and Medicine, 215, 16–22.