Open access peer-reviewed chapter - ONLINE FIRST
Doctors according to their opinions on the frequency of ethical dilemmas and preparation to face them.
Abstract
Palliative Care in children and adolescents with cancer has become a great challenge in current times, not only because of the mortality and morbidity statistics, but also because of the great experience of suffering that it can lead to for patients, their parents and relatives, as well as for the staff that provide health services. The adequate preparation for professional performance within the framework of a humanized medicine constitutes a challenge; Lack of competencies are recognized for their intervention by the work teams. The objectives of this chapter are to describe some barriers and challenges of this care in Latin American countries, as well as to frame the main functions and areas of intervention with the aim of minimizing experiences of suffering, adequate control of symptoms, and preserving or potentiating Health-Related Quality of Life from a bioethical approach.
Keywords
- pediatric palliative care
- pediatric oncology
- pediatric cancer
- quality of life
- death
1. Introduction
Cancer is one of the leading causes of death for children and adolescents worldwide, and approximately 280,000 children aged 0–19 are diagnosed with cancer each year. In Latin America and the Caribbean, it is estimated that at least 29,000 children and adolescents under 19 years of age will be affected by cancer each year. Of these, about 10,000 will die from this disease. In high-income countries, more than 80% of children with cancer are cured, but in many low- and middle-income countries, the cure rate is only 20% [1].
Although major improvements have been achieved in pediatric cancer treatment over the last decades, about 4 million children with oncological diseases worldwide require palliative care due to the nature of their condition [2, 3, 4].
The WHO in 2002 defines palliative care: “Comprehensive active care of patients whose disease does not respond to active therapies. Its foundation is the relief of pain and other accompanying symptoms and the consideration of psychological, social and spiritual problems. Your goal should be to achieve the highest possible quality of life for the patient and his family. Many aspects are also applicable in previous phases of the disease [5]. “In 2004 “…they seek to improve the quality of life of patients and their families when facing problems associated with life-threatening diseases, thanks to the prevention and relief of suffering from through early identification, assessment, and impeccable treatment of pain and other physical, psychosocial, and spiritual problems [6].
The WHO defines pediatric palliative care (PPC) as the prevention and relief of suffering in patients with life-threatening or life-limiting disease, as well as for their families [7]. To this definition, the American Academy of Pediatrics adds that this care must be offered comprehensively from the moment of diagnosis and throughout the entire disease, whatever the final outcome: cure or death of the child [8].
PPC relies on the comprehensive and multidisciplinary management of the child and the family’s physical, psychological, spiritual, and social needs. Importantly, PPC begins at a diagnosis of incurability or supposed incurability, and continues regardless of whether the patient receives any oncological treatment [9]. As such, PPC is a general approach continuing over the entire disease trajectory, which includes, but is not limited to, end-of-life (EoL) care [9, 10, 11].
It is widely accepted that the implementation of PPC in pediatric oncology improves the quality of life (QoL) of the child and family, helps reduce symptom burden, diminishes costs of care and access to intensive care units at EoL, and makes dying at home more frequent [12, 13, 14]. Of note, PPC implementation is not associated with shorter survival of the patient [15]. Despite the wide availability of dedicated literature and the numerous advantages of PPC implementation in the management of pediatric patients, PPC is still poorly implemented in oncology practice [16].
Indeed, 56% of children with cancer do not have access to PPC before death, and 44.2% of children with advanced cancer are referred to PPC only at EoL [17, 18]. Moreover, only 5% of pediatric oncologists and the child’s family discuss palliative advanced care planning [19]. Some barriers persist and prevent a standardized approach to PPC in settings with limited resources and high-income countries [20, 21, 22]. These barriers include poor access to essential analgesic drugs in many countries, lack of services and providers dedicated to PPC, scant allocation of resources, limited development of care models, and non-specific educational curricula for healthcare providers [23, 24, 25, 26]. Furthermore, PPC is often misperceived as a mutually exclusive service from pediatric oncologists by healthcare providers, patients, and families, and is often associated only with EoL care [9]. Due to all of these barriers, it is not surprising that PPC integration in pediatric oncological practice remains suboptimal. Of note, evidence in the literature suggests that most pediatric oncologists feel that PPC should be consulted more frequently than currently. Thus, further research exploring these specific barriers is necessary to understand the disconnection between oncologists’ attitudes and PPC consultation [22].
A comprehensive assessment is required that has an ethical impact on the actions of professionals who work with diseases that can have a fatal course. Pediatric palliative care is the best option for a patient with advanced cancer since people make contact with health institutions. Promoting palliative care does not imply renouncing life in pursuit of its fullness or quality as many may interpret, it only means reconsidering the meaning of clinical measures and concentrating on aspects such as pain and suffering, hope, death management, etc. so that they contribute -above all- to preserving what we have called quality of life or fullness of life. Ramón Bayés [27] a well-known Spanish psycho-oncologist, expressed: “Palliative care is not only the last resort for a group of “biological losers” whom medicine cannot save; they are something to which all human beings have the right to aspire”.
Both the WHO and the American Academy of Pediatrics (AAP) and the EAPC (European Association for Palliative Care) [7, 28] establish that the moments in which onco-pediatric palliative care should ideally be started are:
At the time of diagnosis of a life-limiting disease, to ensure treatment focused on quality of life and symptom relief.
In cancer patients at the time of diagnosis, regardless of their prognosis.
During the trajectory of the disease, not all pediatric palliative patients are cared for by units specialized in pediatric palliative care; this care is adapted to the needs of each patient at each moment of their life. Depending on the degree of complexity of the pediatric palliative patient, three different levels of care are established [29]:
Palliative approach: the pediatrician accepts the irreversibility of the patient’s process and the possibility of death as a natural event, without depriving the patient of what they need to be Any health professional with basic knowledge in palliative care can facilitate the palliative approach of the disease.
General palliative care: it consists of optimizing symptom control, improving decision-making and caring for the family in order to facilitate their adaptation to grief. It requires intermediate knowledge to manage the most common problems in these patients, and must be administered by professionals who have received at least intermediate training in pediatric palliative care.
Specific palliative care: offered by units with specific training and exclusive dedication to palliative care. They cover the needs of a palliative approach and general palliative care and also give control to difficult symptoms, collaborate in making complex decisions taking into account the interest superior of the child, his needs and problems; and in accompanying the family during the life and after the death of the child.
Children are special patients, they do not understand death and pain in the same way as adults. To this fact adds the ethical problems that arise about who should make such tough decisions. Therefore it is important to adequately inform the family and the patient to avoid suffering and uncertainty, and also accompanying them properly.
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2. Materials and methods
A bibliographic search was carried out to date in PubMed. The search strategy used the following keywords: palliative care, pediatrics, and their combination, end of life care, pain relief, terminal care, pediatric oncology, quality life. Only articles available in English or Spanish were included. The search has focused on the last 10 years, and if publications of interest do not appear in that period, an attempt has been made to find the most recent and best quality experiences. Articles containing information exclusively on adults or whose results could not be extrapolated were excluded. Children from 0 to 19 years of age have been taken as a reference for pediatric patients, which is the classification that the WHO follows in palliative care.
2.1 Pediatric palliative care (PPC) in oncology
To better understand the basic principles of PPC in oncology, it is of the utmost importance to consider the wide variability in the prognosis and disease trajectory across different types of pediatric cancer. Indeed, cancer rates in children and adolescents have been steadily increasing since 1975, with leukemia and brain tumors being the most frequently diagnosed [30]. This increase is paralleled by a marked increase in survival rates at 5 years, from 58% in the 1970 to >80% nowadays [31, 32]. Prognosis was also varied: in the 1970s, the poorest surviving rates were found in leukemia’s; nowadays, despite the general improvement in survival, solid tumors, and particularly rhabdomyosarcoma, bone tumors, central nervous system tumors, and neuroblastoma, are associated with the worst prognosis [33]. Moreover, advances in therapeutic approaches have led to a dramatic change in cancer trajectory, which is reflected not only in the above-mentioned improvement in survivorship, but also in a transition of cancer from an acute disease to a chronic condition that includes complex medical needs and medical device dependence [34, 35]. The clinical and natural history is different according to the type of cancer. Hematological malignancies in younger children with acute onset are associated with life-threatening symptoms and sudden death (due to disease progression or acute complications), occurring mostly in hospitals. Solid tumors are more common among adolescents, may have a chronic evolution, have a relevant social burden due to the long course of the diseases, and often present with a progressive deterioration before death [30].
Children and adolescents in advanced stages of the disease have the undeniable right to receive palliative treatment as the best option to guarantee a quality of life until their death, which is nothing more than guaranteeing the right to a good death; For this, it is necessary to stop at the curative approach and move on to a more realistic and hopeful one based on the specific conditions of existence of each patient and their family, which undoubtedly guarantees personalized care [36].
Palliative care in Oncopediatrics implies assuming not only the vulnerability due to the disease but also that imposed by the very status of a minor. Minors are considered vulnerable groups that require social protection, where the state, the family and the treating team have unavoidable responsibilities without violating the development of the right to their autonomy. This assertion finds its genesis in the different contributions of disciplines such as Pedagogy, Psychology, Pediatrics, Psychiatry, Sociology, Legal Sciences, where the importance and concern for integral and harmonious development in childhood and adolescence [37].
2.2 Pediatric palliative care and their application in pediatric oncology
Several conditions fall into the domain of PPC applications and can be classified as life-threatening (high probability of premature death, but also a chance of long-term survival), life-limiting (where there is no reasonable hope of cure; both definitions also refer to serious illness), and terminal [9]. PPC is different from palliative care in the adult patient as it has to take into account the particular characteristics of the pediatric patient at a physical, developmental, psychosocial, ethical, and spiritual level [9, 38]. Furthermore, parents have a major role in all decisions and retain legal responsibilities regarding their children [38].
Therefore, patients in PPC and their families should be integrated into specific care programs according to the available resources [21, 29, 30]. These programs should be implemented at diagnosis or even before diagnosis when this is uncertain [9]. Three levels of PPC delivery can be identified, as follows: (I) palliative approach provided by all healthcare providers; (II) generalized PPC provided by the oncologist with training in PPC; or (III) specialized PPC, provided in a dedicated setting by a team of interdisciplinary PPC experts [31, 32, 33]. The level of PPC delivery can change along the entire disease trajectory [39].
Care can be provided in various settings, e.g., at home, in hospitals, in ambulatory care, or in a pediatric hospice, according to the clinical severity and complexity of needs. Current evidence emphasizes the importance of ensuring care in the setting of the preference of the child and family, but there is no univocal system applicable to all. A “floating” activity, as described by Brock et al., in which the specialized pediatric palliative care team performs a continuous activity divided between the hospice inpatient, hospitalized inpatient with consultation, and home assistance with 24/7 phone consultation plus domiciliary access could be the response to guarantee the continuum of care, which is unusual for PPC [40, 41]. Nevertheless, care at home is generally a common desire of both children and families. Home care ensures a family environment without the additional discomfort of moving to a less familiar and friendly environment, such as a hospital or hospice. Moreover, home care allows for social inclusion in the family’s and friends’ network, counteracting the loneliness that often affects families of seriously ill children [40, 41, 42].
A general palliative approach and supportive care are mandatory in all cancer children. Of note, specialized PPC should be provided well before the EoL period in a child with an incurable or potentially incurable oncological disease, considering the prognosis, the physiological changes related to growth, and the complexity of care [16, 39]. Indeed, the earlier introduction of PPC support in oncological patients has improved QoL and symptom burden [43]. The early integration of PPC also helps in the development of a trusting relationship between healthcare providers and families, thus improving the decision-making process [9].
To help understand when to seek a specialized level of PPC service, some “green lights” have been proposed:
At diagnosis:
Life-threatening illness (e.g., extended brain glioma) or advanced-stage cancer (e.g., stage IV neuroblastoma; solid metastatic tumor)
Diagnosis of a tumor with an event-free survival rate estimation <40% with current therapies.
During illness:
Progressive metastatic disease
Recurrent or resistant diseases, also after organ failure
Major toxicity during treatment
In case of prolonged hospitalization (>3 weeks) or prolonged admission to intensive care unit (>1 week) without signs of improvement
In case of three or more unplanned hospitalizations for serious medical issues within a 6-month period [39, 43].
In addition to the “green lights”, pediatric oncologists may benefit from using dedicated tools to define the complexity of needs. The pediatric palliative screening scale (PaPas) helps identify children with cancer in need of PPC support by assessing five domains (trajectory of disease, expected outcome and burden from treatments, symptoms burden, preference of care of the child/family, and estimated life expectancy) [44, 45]. Its regular use has been associated with an earlier introduction of PPC and subsequent improvement in QoL [46]. Another example is the ACCAPED scale, which defines eligibility to the different levels of PPC delivery by measuring the grade of the complexity of medical needs and the risk of life-threatening events [47]. Nevertheless, using these instruments should not replace the specific evaluation of each case and the development of a trusting relationship. The investigation of the “needs of care” still represents the best approach to understanding the actual needs of the child and family.
Time of life and quality of life must form a binomial, which may not be perfect. When talking about cancer in the early stages of life, life to the full must become the objective of health care and this implies maintaining the personal principle of priority to life or inviolability of life, which cannot be interpreted as the use of disproportionate measures to maintain life, which is why a frame of reference from anthropological philosophy and bioethics is necessary to be able to offer care for life at the end of life. The moral ethical imperative to promote life with the support that this is the first and most sacred right and a necessary condition to be able to exercise any other type of right, determines that the relief of suffering constitutes a goal that gives real meaning to the action and thus be able to potentiate or preserve the quality of life of the little sufferer and his family. The recognition of the rights of pediatric patients and their comprehensive care under a bioethical approach becomes a great challenge for health professionals: due to the very characteristics imposed by the ontogenetic development of children and its main psychological determinants, (the pediatric patient is in a process of growth and development that definitely affects their understanding of the disease, life and death); due to the still prevailing paternalistic biomedical model, due to the great impact that care work can generate with these children and adolescents, as well as the deficit in their curricular training in such important aspects as the communication of bad news, attention to pain, suffering, mourning, death, hope, family surrender crises, the conspiracy of silence, and coping with the different bioethical dilemmas that they have to face in their professional practice. It is a reality that issues such as euthanasia, dysthanasia, orthothanasia, assisted suicide, therapeutic effort limit, palliative care, pain and suffering, are the order of the day when we talk about care for children and adolescents with cancer, which is why it is required of an axiological line that helps us in the process of humanization of Medicine and of life [48].
The considerations around childhood, adolescence and youth have varied through the different times and knowing and interpreting them allows professionals to locate themselves contextually when making decisions and resolving conflicts that entail ethical dilemmas in pediatric care. Diego Gracia [49] expressed that in the practice of Pediatrics there are two different ways of approaching ethical problems: one called paternalistic and the other autonomist. He says that autonomy should never be valued as a radical autonomy, but that its consideration will help to avoid excesses in which the traditional way of resolving ethical problems in childhood has incurred. In this regard, Claramonte Fuster [50] expresses “…the idea that minors are totally devoid of personal autonomy and, therefore, are incapable of making health decisions, enters into crisis from the sixties.”
Several researchers assume that depending on its definition it will lead to immediate moral consequences. Knowledge of the evolutionary development, in general, of children and their moral development qualify a helping relationship that, according to Claramonte Fuster, can characterize a paternalistic doctor-patient relationship or a helping relationship based on autonomy [51].
It is necessary to frame the considerations on autonomy and moral competences in this age group. Autonomy at this stage cannot be governed by the law of all or nothing, that would be assuming a mechanistic attitude towards a problem as complex as the possibility of deciding on life, not even in the adult stage does it manifest itself in this way, since there are different degrees of autonomy and very well, they could be a function of the specific situation rather than the capacity of the subject. For example, should not a child be consulted when a foot has to be amputated? Shouldn’t a child be explained when they must stay in a hospital for months, away from their siblings and other family members or when they request go home because you feel that the treatments are not taking away “this thing that I have”? We cannot continue with the belief that children do not realize their situation, nor its complexity. The same doctors and family members, with their actions, are the ones that very frequently generate negative emotional states, closely linked to inadequate communication. Like other researchers, I believe that age is an important aspect when evaluating the moral competencies of children, but not far from their expertise and experiences, especially when it is a child with cancer. Therefore, it would be opportune to ask ourselves autonomy for what, by whom and under what circumstances. Autonomy, freedom and responsibility are concepts that complement each other. The rights of the child have been universally proclaimed and accepted, which reinforces their recognition as a person, so they cannot be sullied or violated. The Convention on the Rights of the Child, adopted by the General Assembly of the United Nations on November 20, 1989, states that: a child is understood to be any human being under the age of 18, unless by virtue of the law that applicable to him, has previously reached the age of majority and said convention promulgates the constitutive rights of people at these ages [52].
The right to have their opinions valued and respect for them is also conditioned because many of these patients come into contact with illness and suffering from a very early age, which can lead to more mature behaviors than other children of similar ages [53]. From the experience of working with these patients, we can refer that many patients adopt behaviors that protect the suffering of their relatives. The attempt by family members to hide the reality from their children and protect them from information that could cause them suffering does not guarantee that it will be achieved because on many occasions children have more information than parents and professionals suppose.
In Table 1 shows the frequency with which ethical dilemmas arise in clinical care practice and their consideration of whether they are prepared to face them. In it, it can be seen that 56.5% report that it is very common and in the category of common and uncommon, five doctors were located in each one for 21.7% respectively. In relation to the assessment of whether they are prepared to face them, 52.2% expressed that they were not prepared and 47.8% expressed that they were.
| Frequency of ethical dilemmas | Preparation to face dilemmas | Total | ||||
|---|---|---|---|---|---|---|
| Yes | No | |||||
| n | % | n | % | n | % | |
| Very common | 6 | 26,1 | 7 | 30,4 | 13 | 56,5 |
| Frequent | 3 | 13,0 | 2 | 8,7 | 5 | 21,7 |
| Infrequent | 2 | 8,7 | 3 | 13,0 | 5 | 21,7 |
| Never | 0 | 0 | 0 | 0 | 0 | 0 |
| Total | 11 | 47,8 | 12 | 52,2 | 23 | 100 |
Table 1.
Of the 13 doctors (56.5%) who say they face ethical dilemmas very frequently, 30.4% say they are not prepared and of the 3 who were at the frequent level, 2 professionals said they were not prepared. If we combine the levels of Very frequent and Frequent responses, we find 18 doctors (78.2%) who are exposed to ethical dilemmas with some frequency and 9 (50%) are not prepared.
These results reflect the recognition of our professionals of their lack of preparation to face ethical dilemmas that become frequent in their practical actions. This information and the results reflected in other tables express the importance and need for training in Bioethics [37].
Self-assessments in areas of performance in Pediatric Oncophysics, for which professional competencies are required in terms of knowledge, skills, and attitudes, are very important. The appropriation of an ethic of care sustained or based on an ethic of virtues is essential in performing in these areas. The virtues constitute a disposition to do well and should not be governed only by pure altruism, but rather organized in a health system and in the functional performance of any specialty. These “habits of the heart” are formed from undergraduate and are consolidated in postgraduate. If these issues are absent in the training of specialists, they will express knowledge and skills in care, but they will lack attitudes, which will lead to an “ethics of abandonment”, instead of leading to an “ethics of non-abandonment”. Ethical problem that has been reflected in the literature as “dispersion of responsibility” or “collusion in anonymity” [54]. Training in Bioethical issues in Oncopediatrics professionals is insufficient and does not allow the approach to quality of life through all sources, nor considering all the bioethical foundations and principles.
2.3 Reality, barriers and challenges
A study was carried out to find out when the PC started. 54.4% of oncopediatric patients had received palliative services before death [17]. The mean time from cancer diagnosis to palliative consultation was 509.6 days. Therefore, it did not occur at the time of diagnosis as recommended by the WHO. In part it is due to the fear of the professionals themselves; starting palliative care so early may provoke a feeling of hopelessness both in the child and the family. Related to this, a study of 1.2 million subjects revealed of between 33–38% of patients received treatment with curative intent, but with no beneficial effects, in the last 6 months of life [55]. It is better to alleviate and not be stubborn in these cases. Finding the best comfort conditions for the patient. In addition to the above, there are numerous barriers to the effective implementation of Palliative Care: policy (many countries do not include the need for this care in their legislation), education (professionals around the world are poorly trained in these subjects), availability of medicines (many countries have limited access to opioids. Developed countries consume 90% of painkillers [56]. If this is added that more than 97% of the children who need PC are in the latter countries), implementation, need for health personnel, psychological, social and cultural (people tend to avoid everything associated with the word death), financial…
Palliative care for pediatric cancer patients is widely recognized by different countries, organizations and international organizations, which does not imply that they have the same development in all the nations in which they are established. At the IV International Meeting of Pediatric Psychology, held in Mexico City, in 2019, a conference entitled “Reality of Pediatric Palliative Care in Latin America” was presented, conditioned by the review of updated works on the subject and by the The authors’ experience, where reference is made to the fact that there is greater experience in cancer patients than with other diseases, the existence of uneven development in the region between countries, as well as the lack of consensus on CPP programs. 98% of children who need palliative care live in low- and middle-income countries, with little development of the hospice model for children and adolescents and of home care, as well as a lack of interrelation between the different levels of health care. The lack of public strategies that focus on the training of professionals and not only on policies and material resources is exposed, which, moreover, do not cover the needs of the demands of patients and family members, and are still focused on a biologist and paternalistic model. Lack of a palliative approach for curricular training versus technological development [57].
They were presented as challenges or challenges:
Achieve more equitable and universal coverage for children with life-threatening/limiting conditions and their families.
Strengthen social health policies and systems at all levels.
Promote the development of different models of Pediatric Palliative Care.
Adequately incorporate the religious and spiritual dimension.
Recognize them as an essential right and not a resource for losers.
Offer a service focused on quality and warmth of care.
Evaluate the same CPP but at the same time differently than in adults.
Define the role of children and adolescents in decision-making and the role of informed consent in Pediatrics.
Develop intervention strategies to meet the needs of the child, the family and the care team.
Recognize communication, support and teamwork as irreplaceable tools.
Take advantage of the benefits of technology and social networks in their development.
Generate training and professional training activities.
Implement national and intercultural research
It concludes with the need for an unavoidable commitment from the governments for the development of the CPP, to stimulate international cooperation in assistance, teaching and research, and the development of scientific events that allow sharing experiences and socializing knowledge as well as promoting the development of multi-centre and international scientific productions [57].
2.4 Pediatric palliative care and death
2.4.1 Ethics and autonomy
There is a question we must ask ourselves: who should decide? The decision should be a joint one between the patient, the relatives and the healthcare personnel. The child, if he/she is somewhat older, has the right to know the situation and to be well informed [58]. The child, regardless of age, must be adequately informed and adapted to his or her age.
The knowledge of the doctors about the terms of mature minor, emancipated minor and majority is reflected in Table 2. The results show that only 5 doctors frame the age of the mature minor between 12 and 14 years and of them, one places them at 14 years old and the remaining four at 12 years old. These data tell us that, if we consider this range of ages as appropriate, then only 21.7% adequately locate the age at which the minor is considered mature; the others misplace them or say they do not know the term.
| Age | Mature minor | Emancipated minor | Majority of age | |||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| 1–6 | 1 | 4,3 | 0 | 0 | 0 | 0 |
| 7–11 | 5 | 21,7 | 2 | 8,7 | 0 | 0 |
| 12–14 | 5 | 21,7 | 1 | 4,3 | 0 | 0 |
| 15–17 | 2 | 8,7 | 6 | 26,1 | 4 | 17,4 |
| 18 and over | 2 | 8,7 | 2 | 8,7 | 18 | 78,3 |
| Does not know | 8 | 34,8 | 12 | 52,2 | 1 | 4,3 |
| Total | 23 | 100 | 23 | 100 | 23 | 100 |
Table 2.
Opinion of doctors in relation to age to define the categories of: Mature minor, emancipated minor and majority.
Ignorance of this theory or doctrine could cause many professionals not to maintain a more flexible position in relation to considerations of capabilities and self-determination in these patients, despite the fact that it is not institutionalized in our country. Although in our country this term is not supported by law, it is at least important to highlight that the Civil Code [59] in force in our country expresses in its Article 29 that the full capacity to exercise rights and carry out legal acts is acquired by: (a) when the age of majority is reached, which begins at 18 years of age and in section (b) when the minor gets married.
Article 3 of the Family Code states that exceptionally, and for justified reasons, minors under 18 years of age may be granted authorization to formalize the marriage, provided that the female is at least 14 years old and the male is 16 years old, also compliments.
This reflection is made to draw attention to the “age” variable to assume responsibilities towards some things and not towards others. I wonder, will not the condition of illness be an important factor for adolescents to also assume other responsibilities for very justified reasons in relation to their health?
The term emancipated minor is unknown to 52.2% and 6 doctors (26.1%) placed it at ages between 15 and 17 years and of these only 4 at the age of 16 years; therefore, 82.7% do not place it appropriately due to the age variable.
The knowledge of when the age of majority is acquired is more adjusted to reality, with 78.3% of doctors stating that the age of majority is reached at 18 years of age and older; of them, only two cases refer to 19 years of age and one to 21. It is important to highlight the significance that this concept has for pediatric practice in adolescents with cancer where, as they themselves express, they very often face ethical dilemmas that arise due to conflicts. Decision between the professionals and the patient or between the patient and their parents or between the professionals and the minor’s parents [37].
These data are very important for the topic discussed where it is ultimately assessed whether children with cancer can and should evaluate their quality of life [60].
2.4.2 Death awareness
Seriously ill children who know that death is irreversible are afraid of not leaving a legacy, of being forgotten. They also tend to think about death, even if they do not communicate it. From 18 months to 5 years of age, children do not understand the concept of the future, they live only in the present and associate death with sleep and immobility. From 5 to 10 years of age, they begin to be curious about death, and it implies separation not only from parents but also from friends and school. The irreversible nature of death is acquired around the age of 9 years, especially the fear of the death of parents appears [61].
Death is, therefore, a reality faced by the teams that care for children with cancer, so it is a situation that can be conceived as a failure at work or as the loss of someone significant [55]. It is this feeling of loss and the perception of less effective care or attention provision that can generate impotence, suffering, anger, sadness and insecurity, leading the professional to greater emotional exhaustion [57]. This is added to the appearance of physical health problems such as headaches, excessive nervousness, abdominal disorders and sleep disturbances, which translates into a decrease in the quality of care, job dissatisfaction and increased absenteeism. For some participants, this problem responds both to the lack of professional training in the areas of palliative care and grief support as well as to the inadequate support that exists from the health institutions themselves to the health teams, in the process of coping with the loss of patients [61].
In the case of pediatric cancer care, it must be taken into account that treatments are long and have many side effects for patients, requiring a growing demand for care, to which are added organizational factors such as fatigue due to lack of personnel, communication deficits, surrogate decision-making, role conflicts, and insufficient vacation time [61].
In contrast to the above, some nursing studies have revealed that the death of a patient can also generate positive attitudes, which are related to the satisfaction generated by the delivery of quality care to people at the end of life, which is considered rewarding and a learning situation, reducing the risk of emotional fatigue and with it, the burnout syndrome [62, 63]. Following what has been described, several studies have indicated that social support for health professionals can be an important mediator in coping with the death of patients, especially in the field of child health care [64, 65]. However, this support must not only be mediated by the recognition of the emotional bond with the patient, but also by the possibility of expressing the pain of the loss and feeling real support that responds to expectations and needs [22].
Llantá (2011), states that the diagnosis of Cancer in a child or adolescent, even when cancers in these age groups present a different behavior in terms of morbidity and mortality statistics in relation to Cancer in adults (70% of diagnosed patients may be survivors of childhood cancer) It is no less sad that 30% will die from the disease and/or complications throughout the treatment, so death must be considered within the natural course of the neoplastic disease [66].
In Table 3 we have grouped different areas of performance that can in themselves be established as indispensable instruments of commitment in Oncology and especially in Oncopediatrics. As can be seen, the highest frequency percentages located in the Very category were: communication of treatments, with 11 professionals (47.8%) and communication of the diagnosis, with 9 (39.1%). In the Quite category, the best results were achieved by: communication of change from curative to palliative treatment and in attention to death, with 15 doctors (65.2%) respectively, followed in descending order by attention to suffering with 14 doctors. (60.9%), therapeutic care of hopes and knowledge in palliative care with 13 physicians (56.5%) respectively. More than half consider that they have little or no preparation in caring for grief with 12 professionals (52.1%), nor for caring for crises of family claudication with 14 (60.8%) and for the conspiracy of silence with 13 (56.5%).
| Performance areas | Preparation level | |||||||
|---|---|---|---|---|---|---|---|---|
| A lot | Quite | Bit | Nothing | |||||
| n | % | n | % | n | % | n | % | |
| Communication of the diagnosis | 9 | 39,1 | 11 | 47,8 | 1 | 4,3 | 2 | 8,7 |
| Communication of treatments | 11 | 47,8 | 9 | 39,1 | 1 | 4,3 | 2 | 8,7 |
| Communication of change from curative to palliative treatment | 5 | 21,7 | 15 | 65,2 | 0 | 0 | 3 | 13,0 |
| Attention to the dying process | 2 | 8,7 | 15 | 65,2 | 4 | 17,4 | 2 | 8,7 |
| Pay attention to fears and worries | 3 | 13,0 | 11 | 47,8 | 6 | 26,1 | 3 | 13,0 |
| Attention to suffering | 4 | 17,4 | 14 | 60,9 | 3 | 13,0 | 2 | 8,7 |
| Pay attention to hopes | 4 | 17,4 | 13 | 56,5 | 4 | 17,4 | 2 | 8,7 |
| Grief care | 2 | 8,7 | 9 | 39,1 | 10 | 43,5 | 2 | 8,7 |
| Prevention of family claudication crises | 2 | 8,7 | 7 | 30,4 | 9 | 39,1 | 5 | 21,7 |
| Prevention of the conspiracy of silence | 1 | 4,3 | 9 | 39,1 | 8 | 34,8 | 5 | 21,7 |
| Limit therapeutic effort | 4 | 17,4 | 11 | 47,8 | 5 | 21,7 | 3 | 13,0 |
| Palliative Care | 2 | 8,7 | 13 | 56,5 | 6 | 26,1 | 2 | 8,7 |
Table 3.
Level of preparation for performance in difficult situations.
Illustrative statements extracted from the interviews are expressed that denote the lack of preparation on these issues.
“I do not have the courage to tell a teenager or someone who is 8 or 10 years old who considers themselves a teenager: you have osteosarcoma or you are full of metastases and you are going to die soon, I do not have the courage to say that, Now, to the family yes, to the mother, to the father but not to the child, I do not have the courage for that”; “…ah look, you have a little cyst on your leg that we are going to take care of and since you are going to get a little short of breath at times, we are going to give a little bit of oxygen to help you but you are going to see that everything It’s going to get better soon… you are going to see that soon, now it’s not immediate, it takes a little while, it could be 15 days, it could be 20 days, you are going to get the oxygen when you need it… I do not have the courage.”
“…I do many things because I have been learning from you…”.
All the contents addressed are related to the topic of palliative care and its therapeutic management, where the majority of researchers and experts on the subject refer that there has been and still is a lack of curricular training, both from undergraduate and postgraduate levels [67]. In Cuba, the Special Working Group on Palliative Care, of which the author of this research is a member, has carried out training on these topics in different provinces of the country, but in the area of adults. Training on these topics of pediatric palliative care is a debt to our professionals and to our little mourners that must be resolved [37].
The author of this research [37] states that “The current medical model emphasizes the cure much more than the relief of suffering and this same paternalistic and even biological model makes us feel like losers when we cannot save a life and even guilty, so we perform heroic acts that have no other result than affecting the quality of life and a good death.
The doctor fails when he puts stubbornness into practice by maintaining obstinate behavior; what we consider inhuman, on many occasions demeaning and always a costly mistake that our little sufferers have to pay for as well as their families, but the professionals who care for children and adolescents with cancer do not fail when they appropriate the approach in their professional clinical practice. of palliative care, which presents among its basic strategies not to shorten but not to lengthen life, not to advance death but not to delay it, not to favor death but not to make it difficult, not to kill but to let go, not to isolation, abandonment, emotional distancing, inadequate management of hopes and the conspiracy of silence, which implies proper management of information, promoting a quality death that is nothing more than giving quality of life until the last moment of existence. This aspect entails ethical dilemmas that are difficult to resolve and as Dr. Gómez Sancho would say “The doctor must learn that everything that can be done… should not be done” [68].
The CPPs and their establishment need to be in tune with the needs of patients, families and the team that provide health care in a specific sociocultural context, policies and institutional and state strategies cannot be unrelated to their implementation. Pediatric patients receiving palliative care are in a stage of development in all its aspects, where their psychological needs are related to the evolutionary stage within their ontogenetic development, but there are also needs conditioned by the disease, its treatments, frequent hospitalizations, changes in the family, social, school dynamics, the separation from their siblings, relatives and friends, which will undoubtedly influence their adaptation process. Their cognitive and emotional development condition the assessments they will have about their symptoms, worries, limitations and about the conception of the process of dying, which has meant that today it is the patients themselves who offer more accurate assessments about indicators of a subjective-emotional nature so their assessments should not be excluded. Symptom control, minimizing experiences of suffering and preserving and/or enhancing their quality of life and well-being cannot be outside of the own considerations and assessments of these patients [69].
The issue of communication and teamwork are irreplaceable tools for achieving objectives throughout the entire process and much more at the end of life.
Affectations in caregivers of children and adolescents with cancer are confirmed -more specifically in parents- while the reports on the QoL of their children are worse than the reports of the patients themselves, which places parents and family members as vulnerable groups in need of psychological support. Identifying the needs of these families, their preparation for the process of dying of their children, how to avoid the conspiracy of silence, crises of family claudication and preparation for mourning are tasks of the first order within the framework of a humanized medicine. If caregivers are affected, this will have an impact on care, so it is essential to work with them to alleviate their suffering, improve their coping styles and provide them with personological resources that allow them to fulfill the painful task of caring for a child with cancer [69].
The conspiracy of silence, under the pretext of protecting the minor, only achieves an atmosphere of mystery and loneliness and this is very common in pediatric and adult practice. If we take what happens with adults with cancer as a reference, it is impossible not to think that this phenomenon is much more exacerbated in children and adolescents. Doctors believe that children are unaware of the situation, ignoring the experiences that they are accumulating in their own hospital wards and the behaviors and attitudes of family members and that of the professionals themselves. Family surrender crises and grief are issues that require solid professional training and a deep ethical commitment that we cannot leave to spontaneity and common sense. When a person like this is asked and demanded to “do their part” or to “fight for life”, to “be strong”, when they are deceived by promising an improvement that does not come, when they are treated with pity that lacerates self-esteem, when we are asked questions for which we have no answers for fear of hurting them and making them suffer, when silence and silence as an answer is our behavior, we are generating unnecessary suffering and for this we are responsible. We must be very careful with the information, which cannot be translated into the absence of communication [70].
The illustrative statements that were expressed in the interviews.
“…in my opinion, you can say, well, someone who can come close to what I would classify as well prepared, in that someone I am talking about perhaps 5–10% of doctors, I cannot tell you more honestly. Because I think there is nothing more to it than that.”
“To give you examples that I have had, I have had to assume this support role and remove the professional because that professional is participating in that moment in the duel as if he were a family member and therefore, loses the role.”
“…generally the palliative part belongs to what is primary care, we are here to cure.”
“You see the children, you know that they are going to die, that they no longer have a solution and you continue with the palliative treatment and things like that…, personally I reject him a little, I no longer want to go in to see him, now I do not want to… since I know that this is the reality in me, in my person, when I know that they are in this phase and I have to go see it, it’s my turn, but I would not want to go see it, I would not want to enter. To that cubicle, I would not want to anymore, do you understand me?… I already see the parents with pity… sometimes I would not want to look at them in front of them.”
“There are people who continue to make the same mistakes when it comes to managing grief. Do you want something more difficult than seeing the professional give elements to perpetuate the grief?…”; “You as a professional have to know that grief does not exist until the patient dies.”
The author’s criteria, supported by reviews on the subject and by her work experience with children with cancer for 17 years, is in favor of children who die of cancer receiving aggressive treatments at the end of their lives, experiencing suffering without adequate control of symptoms, they die in health institutions, in intensive care rooms full of technology and do not receive the benefits of home care at all.
In professionals, it is important to stimulate the development of competencies for this type of care, from the development of knowledge, skills and attitudes, since they frequently complain about the lack of curricular training. It is also necessary to prevent and control burnout or burnout syndrome, compassion fatigue, the development of strategies for teamwork, the work-family relationship, and emotional self-regulation in the face of the suffering of others. The evaluation of professional burnout emerges as an important task to develop since in reality it is not a myth, but a reality in our environment. It is not ethical, nor human, to be treated by a professional who is affected by the so-called Burnout Syndrome (depersonalization, emotional exhaustion and lack of personal fulfillment); neither is working in those conditions were not only the health of the worker is affected, but also the health of the family. This was studied in these caregivers, also as part of the “Quality of life in Oncopediatrics” Project [71]. Different investigations support the need to pay attention to this syndrome [72]. The therapeutic relentlessness or the use of disproportionate means are conceived as a transgression to the quality of life, although it is recognized that it occurs in clinical practice. For this group of professionals, the concept of quality of life in patients with advanced or terminal disease is not renounced, a very important aspect in light of the current controversies within Bioethics between utilitarian and personality perspectives around this concept and its misuse as a justification for ending a life when it is considered without quality [72].
“There are people who continue to make the same mistakes when it comes to handling the duel, do you want something more difficult than seeing that the professional gives elements to perpetuate the duel?…”; “You, as a professional, have to know that the duel does not exist yet until the patient dies.” This constitutes an erroneous conceptualization of mourning. There is anticipatory mourning that, when well-managed, helps family members in coping with the death of a loved one [73].
The training of these pediatric palliative care issues is a debt with our professionals and with our little mourners that must be resolved.
2.5 Professionals
The non-inclusion of value ethics in their conceptions leads to a reductionist use of the term. The professionals recognize that if they offered information provided to patients in relation to their diagnosis, treatment, and side effects, if they listened to their worries or concerns, and if they provided psychological support, they would contribute to preserving or enhancing the quality of life of their patients.
These same researchers, like Cassem [74], report that telling the truth, adapted to the strength of each patient and maintaining hope, is a firm basis for a relationship of trust and will facilitate the resolution of problems that arise in the cancer patient journey.
The communication of the diagnosis is a dynamic process, where the correct use of the information is therapeutic and where the main principles to inform are those of the bearable truth and the truth desirable.
Teamwork and psychological support were recognized as favorable factors that influence the quality of life of these children and adolescents.
Teamwork, the work of the psychologist and emotional support are resources that promote quality of life as buffers against emotional distress in children, family members and the work team itself.
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3. Conclusions and future directions
A child with cancer needs care beyond cancer treatment, such as treating complex symptoms, psychosocial support, and sharing existential and spiritual issues. The goal of PPC is to share strategies, tools, and skills with pediatric oncologists to guarantee a continuous and multidimensional assessment and management of those needs, and taking care of the patient−family unit. Early involvement of a PPC team and the application of the PPC principles has been shown to positively impact the QoL of pediatric cancer patients at all stages of the disease.
Unfortunately, there is still a gap between what could be done and what is being done in clinical practice. Indeed, there are several areas to be addressed to allow all children with cancer an integrated and effective approach to palliative care: first, training that allows and stimulates integration between pediatric oncologists and PPC experts, through the acquisition and sharing of skills on the fundamental principles of palliative care and teamwork. Another important need is research: collecting and sharing data, strategies, and tools can lead to new strategies and more effective models of care. To reach all children eligible for PPC and their families, new technologies and tools, such as telemedicine, should be implemented.
With the hope that the availability of PPC services will increase worldwide, we believe that it is now essential that the application of palliative care principles becomes familiar to all healthcare professionals. Today in pediatric oncology, holistic care of the child with cancer and their family represents a standard of care that must be guaranteed to every child in every setting.
Moreover, a constantly evolving field, the challenge for the future will be to harmonize the interaction between PPC specialists and oncologists in order to provide truly holistic patient care.
Despite medical advances, pediatric palliative patients still continue to suffer significantly.
One of the most important goals of PCs focuses on the need to initiate this aspect of care as soon as possible, as well as to work in a multidisciplinary manner, delving into the latest quality information in order to improve the health care of our patients. A fundamental point is the doctor-patient relationship and the doctor-family relationship, in order to achieve a global approach to the patient’s problems. To this end, it is essential to work on the psychosocial, emotional and spiritual aspects, as well as to provide the necessary and fair information to both the patient and the family members in order to facilitate the assimilation of the process. Another very influential aspect is the international inequality in terms of recognition of this right and the material and drug availability of the countries. Governments must cooperate and help less wealthy countries to achieve the objectives proposed by the WHO.
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Author contributions
Data collection, F.M., and LL. MC.; manuscript writing: F.M., and LL.MC.; manuscript revision, F.M., and LL.MC.; approval to submit: F.M., and LL.MC. All authors have read and agreed to the published version of the manuscript.
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