Ethical issues in cancer: the points of view of specialists

Abstract

Ethical issues raised by the detection of cancer start from screening, continue with the diagnosis and the choice of the best therapeutic option for the patient, also taking into account the quality of life and the end-of-life care. The ethical problems are those of general use medical practice, but also those specific to the oncological patient. Chemotherapy and surgery in cancers allow hope for a better survival and a higher quality of life for many patients nowadays. The decisions are chosen in relation with the best therapeutic option and in accordance with the informed patient’s preferences regarding side effects versus quality of life the patients’ life along with their physicians, families, and community, from cancer detection to the ending, is associated with complex choices and decisions, questing certain ethical issues that we try to reveal in our study.

 

Tablet of Contents:

1. There is a time for evidence-based medicine and a time for value-based medicine

2. Primum non nocere and quality of life

3. Psychosocial distress in cancer patients

 

1. There is a time for evidence-based medicine and a time for value-based medicine

In line with the medical and scientific concepts that marked the beginning of our millennium, evidence-based medicine was one of them, with the idea of patient-centered healthcare and cost-effectiveness of healthcare system, the integration of patient’s choices into the evidences that physician has about the effectiveness of a therapeutic protocol and the own practical medical experience. Thus, the findings and evidences of scientific studies have become a central part of this concept and the main option in decision-making process, so that the medical experience was put in a secondary place, in order to minimize the subjectivity of the clinical examination. However, clinicians have observed that the best scientific evidences are not always enough to take the best clinical decisions, depending on the conditions and preferences of the patient, but also taking into account the patient’s values [1].

Thus, patient’s values were added to the definition of evidence-based medicine, including listening to the patient’s opinion, informing and involving the patient in the medical care process. A list of eight principles was made by Picker Institute, referring to respecting patient’s preferences, coordinating and integrating healthcare, patient’s information and education, physical comfort, emotional support, involvement of family and friends, continuity and transition, and access to healthcare. These principles imply the patient’s involvement in the decision-making process regarding investigations and treatment, decisions that can be taken by each individual as a unique being by social and cultural own experiences, respecting patient’s traditions and values [2].

Integrating the concept of evidence-based medicine into value-based medicine and with the concept of health-related quality of life implies certain limits, related to patient’s preferences, on the one hand, and the ability of healthcare systems to provide access to a variety of therapeutic investigations and protocols, on the other hand. Although randomized trials provide the best scientific evidence, however, an indication of clinical efficacy is limited by the specific individual characteristics, highlighted in a community for which clinical trials are supposed to produce a conclusion that can be extrapolated in all individuals. Thus, a new concept of patient-centered care has emerged. The feedback reported by patients, as healthcare consumers, is important in the decision-making process within the concept of comparative effectiveness research and, of course, in the assessment of therapy toxicity and efficacy. Although there is some tendency to make exceptions, healthcare systems still take into account the cost-benefit analysis, extrapolated at community level, but also in line with the principles of medical ethics [2, 3] (an example might be the new guidelines for prostate- specific antigen screening to be performed for each individual according to their risk level for prostate cancer and not in general population) [4]. According to current trends, cost-benefit analysis is commonly understood to be closely related to utilitarianism and incompatible with other moral theories, especially those that focus on deontological concepts, although some authors reject this claim, arguing that it can take account of systematically by moral rights and other non-utilitarian moral considerations [5].

In this ethical, scientific, financial, and psychosocial context of the early millennium, medicine has acquired a new concept: value-based medicine or humanized medicine that integrates the results of scientific research with patient’s values as an individual but also as a consumer of healthcare services.

Researchers from the United States said, years ago, in their study [3] that patient-centered care is an approach to healthcare that should consider respecting patient preferences justified only for moral reasons, independent of their relation with the results they have on health. Further, the authors have underlined the idea that many of these measures led to confusing results, such as worsening the health state of a patient suffering from a chronic disease after the physician considered patient’s choices about the oncological disease treatment [3]. As an example, choosing an aggressive regimen for an end-of-life care could be associated with a higher toxicity and a lower quality of life. The best ways that patient-centered care could have the best results are trying to find out, taking into account psychological aspects such as the patient’s feeling of being respected, involved and informed about the health condition in order to diminish the level of stress associated with the disease and the uncertainty associated with the survival and quality of life [6].

 

2. Primum non nocere and quality of life

The interests and well-being of patients, in relation to therapies and healthcare, are the primary responsibilities of a physician of any specialty. This principle is also based on the individual preferences of the patient, that is to say the respect for patient’s autonomy.

Avoiding actions that could harm the patient (non-maleficence) and providing medical care in relation to the interests of society and other patients revealed another principle of medical ethics [6]. These principles often lead to the highlighting of ethical issues when they should be applied especially to the oncological patient.

Recent advances on cancer research have led to curative therapeutic protocols for various forms of cancer such as breast cancer, ovarian cancer, small cell lung cancer or acute lymphoblastic leukemia. Chemotherapy and surgery in cancers that are currently not considered as curative allow hope for a better survival and a higher quality of life for many patients, nowadays. The decisions are chosen in relation with the best therapeutic option and in accordance with the informed patient’s preferences regarding side effects versus quality of life [7]. However, studies on end-of-life care put in evidence additional factors that may increase the risk of death or worsening health-related quality of life, such as age or co- morbidities [8]. These issues, challenges, and dilemmas have led to various studies in medical university centers worldwide. For example, in the United States, a study highlighted the problem of using morphine in advanced cancer patients due to possible respiratory distress, and in England, another study raised the issue of end-of-life care for renal or hepatic failures, or for hydro-electrolytic or nutritional imbalances, the use of antibiotics, steroids or analgesics [9, 10].

Incurable patients may experience significant and dynamic changes in physical symptoms and psychosocial reactions. Pain, fatigue, dyspnea, intestinal symptoms, depression, insomnia should be understood as part of end-of-life care. The death of end-stage patients can be considered as a natural process, according to a study conducted in India [11]. The same Indian study mentioned the existence of a balance between ethical principles for the protection of the vulnerable patient against the harmful effects of oncological therapies, and authors in Europe define this idea of over-medicalization using the new concept of quaternary prevention, according to the principle Primum non nocere (“First, do not harm”) [12]. The concept of quaternary prevention was formulated for the first time by Marc Jamoulle in 1986 [12].

According to data published by the International Agency for Research on Cancer (IARC) in 2018, cancer was the second leading cause of mortality worldwide, with 9.5 million deaths, and epidemiological data reported for Europe showed 4.2 million new cases of cancer, and for WHO South East Asia region, 2.0 million new cancer cases with 1.3 million deaths [13, 14].

In this context of increased values for cancers statistical indicators, the costs of healthcare systems for oncological care have increased in the last decades. In the United States, cancer care costs represent about 5% of total healthcare spending [6]. In 2014, in Europe, healthcare spending for patients with cancer accounted for 6% of total healthcare expenditures, ranging from 3.9% in Portugal to 7% in Hungary. In Romania, they were estimated at 6.8% [15]. In the United States, cancer care costs have risen rapidly over the past decade and are expected to grow to $158 billion in 2020. The American Society for Clinical Oncology has published a protocol to evaluate oncology therapies in order to highlight the best regimens in relation to the clinical benefit of the patient, their toxicity and costs. The key features of cancer care have been defined thus, using: safety (toxicity), clinical benefit, patient’s orientation, cost effectiveness, opportunity and equity. Clinical scores for overall survival, progression free survival, comparative toxicity of the regimens was highlighted, and a net health benefit score (NHB) was then defined [16].

According to the results of studies in which NHB score was calculated, this score appears to be in accordance with the ethical principles applied to the oncological patient. Other health and well-being indicators as well as further studies will be able to prove whether the premise of the present will also be valid for oncological patients in the coming years, or it will be necessary to define other scores that also take into account other variables such as patient’s values, psychosocial identity in a community characterized by its own specific values and traditions, similar or different to those of the individual [17].

The physician’s values should be added to those of patient, even the values of healthcare providers and social, financial and political values of healthcare systems. Values are complex and can be contradictory, from one individual to another or from one healthcare system to another. The physician’s skills and experience acquired during the practice of value-based medicine and/or the involvement of specialists (medical psychology and psychiatry) may be necessary in the patient/physician shared decision-making process [18].

Another aspect that healthcare systems take into account concerns the cost of care for the oncological patient. Oncological therapies are costly, and some authors consider the discrepancy between the costs and benefits for patients. The failure of the oncologist to communicate realistically with patients as to the preferences of care, depending on the stage of cancer, indirectly adds to these healthcare costs. An issue of ethics arises when it comes to the question whether in the last months or weeks of the patient’s life costly treatments are used or not. Retrospective studies showed that these interventions are unnecessary, and aggressive end-of-life care could be associated with even a decrease in survival and a worsening of the quality of life due to the toxicity of interventions [6]. However, ethical issues remain valid and currently depend on proper informed patient’s choices in the context of healthcare systems with different financial limits.

 

3. Psychosocial distress in cancer patients

Psychosocial distress should be considered in patients suffering from cancer. Studies have estimated that it could range from 29.6% to 43.4% of patients, being associated with depression. These conditions, when undiagnosed, can lead to lower quality of life and even early death or may accentuate other comorbidities. Depression and psychic distress were included in the screening of oncological patients by the American College of Surgeons Commission on Cancer, in 2012, when the Screening for Psychosocial Distress Program was initiated, in order to improve awareness of depression and distress, detect the psychiatric symptomatology associated with oncological disease and treat it accordingly [19].

Patients with co-existing cancer and mental illness must be given special attention due to the vulnerability that arises from their possible inability to fully comprehend the meaning of their cancer diagnosis, treatment, and prognosis. They are at increased risk for mortality due to many factors arising from their disability [20-22]. To deliver care that is just and compassionate, clinicians must be empathic, imaginative, and nonjudgmental.

 

The Authors:

CHELARU Liliana [1]

MANOLE Alina [2]

HASAN Ul Shiraz [3]

VELENCIUC Natalia [4]

1 Department of Morphological Sciences, “Grigore T. Popa” University of Medicine and Pharmacy Iasi (ROMANIA)

2 Department of Preventive Medicine and Interdisciplinarity, “Grigore T. Popa” University of Medicine and Pharmacy Iasi (ROMANIA)

3 Department of Psychiatry, Era Lucknow Medical College, Lucknow, Era University, Uttar Pradesh (INDIA)

4 Oncologic Regional Institute; Department of Surgery, “Grigore T. Popa” University of Medicine and Pharmacy Iasi (ROMANIA)

 

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