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The rights of the dying child and the duties of healthcare providers: the “Trieste Charter”

Abstract

Purpose

The death of a child is a devastating and tragic event for all those involved. This charter aims to help healthcare workers and people assisting terminally ill children to recognize some important rights of the child, with some related suggestions. We consider it important to have a trace of this process, based on the skillfulness of long-lasting experts.

Methods

In September 2012, a group of professionals working with children affected by incurable illness in Italy launched a project to formulate the charter. Trieste is the city where the group of professionals first met to start the project. The first step was a detailed literature search on the topic, the second step was an extensive discussion among the professionals (writing committee) to prepare a first draft; later (third step) the draft was revised by 38 experts in different areas, including patient and family representatives, and lastly (fourth step) the final version of the charter was prepared.

Results

We developed a document containing 10 rights and corresponding duties that could be applied to any clinical situation or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness.

Conclusions

The Trieste Charter proposes fundamental rights for children who are approaching the end of their lives. The charter will have achieved its purpose when every person caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity.

Tumori 2017; 103(1): 33 - 39

Article Type: ORIGINAL RESEARCH ARTICLE

DOI:10.5301/tj.5000566

Authors

Franca Benini, Roberta Vecchi, Pierina Lazzarin, Momcilo Jankovic, Luciano Orsi, Luca Manfredini, Paola Drigo, Valentina Sellaroli, Michele Gangemi, Marco Spizzichino, Marcello Orzalesi

Article History

Disclosures

Financial support: No specific support was received for this work.
Conflict of interest: The authors have no conflicts of interest to disclose.

This article is available as full text PDF.

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Introduction

The death of a child is a devastating and tragic event for all those involved, including family members and healthcare providers. Sometimes the people closest to the child refuse the negative progression of the disease and, consequently, do not recognize terminal illness and death as real and imminent issues to be addressed; as a result, children are subjected to unrealistic decisions and treatment choices. More frequently, although fully aware of the reality of the situation, they try to “protect” the child from a truth that they consider too difficult and painful to cope with by avoiding it in conversation, justifying it as the price to pay for an imaginary better future or, despite the obvious state of affairs, blatantly denying it.

In both cases, even if the protagonist is the child, he or she becomes the object of treatment, care and love, and is deprived of his or her role as a person able to speak out, decide, express and discuss personal feelings, wishes, hopes and deepest fears.

Many publications (1-2-3-4-5-6-7) in recent years have addressed the issue of end of life in pediatric patients, analyzing the effect of diverse scenarios, approaches and decisions and their long-term consequences for the various family members.

The availability of and access to pediatric palliative care services allow families to choose and plan more effective strategies for addressing the issues linked to the end-of-life phase in children (1-2-3-4-5-6). Specific training for caregivers (7, 8), communication about the clinical situation (9, 10), cultural and social factors (4, 11) as well as ethical and legal issues (4, 12-13-14) are all important in modulating the approach and management of end-of-life situations in children, since they influence the decisional and active roles of the child, family and caregivers, and have a profound impact on the quality of life and death of the child, on personal memories, and on the long-term outcome of survivors. Many documents of an ethical nature concerning the child’s rights and his or her legal and social roles are also available (15-16-17-18-19-20-21-22-23-24-25-26-27-28-29-30-31-32-33-34-35-36-37-38-39-40).

The Charter for the Rights of the Dying Child, proposed by a panel of Italian experts (doctors, nurses, psychologists, philosophers, ethicists, legal experts, parents, and journalists) and supported by the Maruzza Lefebvre D’Ovidio Foundation, was drawn up with the aim of highlighting the rights of young patients approaching the end of their lives; rights that age, personal conditions, culture, location or time cannot – and should not – undermine. The chapter is referred to as the Trieste Charter because it was the idea of a panel member from Trieste, and Trieste was the city that hosted the components of the committee which elaborated the project. A short version of the present article was published in the correspondence section of The Lancet (2014;383(9928):1547-5478).

The purpose of this paper is to disseminate the full version of the Charter and describe its development process in detail. The Charter’s purpose, in turn, is to provide an easily comprehensible tool that proposes elements for consideration and conduct, and to offer suggestions and solutions that can be applied in any clinical or environmental circumstances with the aim of safeguarding respect for the child’s rights and dignity in any setting or situation, and this is addressed to everybody, not only healthcare professionals.

Methodology

In September 2012, 12 Italian experts working in the field of palliative care for children in different professional roles (clinical, psychological, ethical, spiritual, relational, legal, organizational, etc.) together with 8 parents chosen by healthcare providers of the treatment centers and participating on a voluntary basis, who had lost children to incurable illness, acknowledged the need to write a Charter of the Rights of The Dying Child, with the objective of providing a document that could serve as a practical guide for the correct management of children during the terminal stage of their disease.

Some utterances, poems and phrases by children were added to make the development of the reported rights more practical and effective. This gave originality to the Charter, avoiding repetition and stimulating the most appropriate application.

The project was developed in 6 steps (phases):

Review of the literature and pertinent publications through a systematic electronic database search, including also government and nongovernmental websites.

Compilation of a first draft.

Distribution of the draft to 50 Italian experts (including the 12 members of the writing committee) selected on the basis of their scientific publications, professional background or occupation, institutional role and experience in the cultural, spiritual, ethical, legal and social aspects of child-specific palliative care, and to relevant non-profit organizations, asking them to review the document and provide comments, suggestions and possible improvements. (The list of 50 experts is available at the Italian website www.maruzza.org/carta-dei-diritti-bambino-morente-la-carta-trieste/ and can be obtained by downloading the Charter).

Organization of a Consensus Conference, with the participation of the above-mentioned expert reviewers, for discussion of the draft and possibly integration of their comments and suggestions.

The English translation of the document was then reviewed by a panel of international experts and their comments, suggestions and corrections were incorporated in both the Italian and English final versions.

Distribution of the Charter to the foremost national and international reference organizations.

Results

The Charter is based on an extensive review of official documents, research papers and related literature; the plurality of sources and contributors ensures a comprehensive vision of both the rights and the relative duties. It is subdivided into 4 parts. The first part includes a glossary (see Box 1) providing definitions of the terminology used in the document, of which the semantic meaning must not be interpreted as absolute and all-embracing, but rather applied to the child’s reality and end-of-life situation. The second part lists the 10 fundamental rights of children who are approaching the end of their lives. The third part provides for each right a corresponding duty, with explanatory notes for their correct interpretation and application based on a synthesis of the norms and indications contained in previous related documents and publications and followed, in some cases, by a phrase or poem by a child (see the “Practically” sections below). Finally, the fourth part consists of a reference list including the most important and pertinent national and international documents and publications.

The Charter of the Rights of the Dying Child (the “Trieste Charter”)

The Charter analyzes the needs of the dying child, defines his or her rights, and indicates how to address his or her physical, psychological, relational, ethical and spiritual needs as well as those of the family and other persons who are close to or care for the child.

It emphasizes that dying does not undermine a person’s rights; on the contrary, the child’s fragility and vulnerability and the complexity of the situation make them ever more important and deserving of respect.

The core section of the Charter, referring to Rights and Duties, is reported below.

Rights

Every dying child has the right to:

Be considered as a person until death regardless of age, location, condition and care setting.

A child is a PERSON in every respect from the time of birth.

Receive effective treatment for pain and for other physical and psychological symptoms causing suffering, through qualified, comprehensive and continuous care.

Children, regardless of their age, experience all the aspects of illness and death. They have the right to receive comprehensive healthcare that adequately addresses all their clinical, psychological, social, ethical and spiritual needs.

Be listened to and properly informed about his/her illness with consideration for his/her wishes, age and ability to understand.

The child should receive appropriate information about his or her illness, its trajectory and proposed treatment.

It must be considered that children have their own particular understanding of death that is conditioned by many factors including age, maturity, nature and progression of the disease, as well as their culture, customs, beliefs, sociocultural context and family relationships.

Participate, on the basis of his/her abilities, values and wishes, in care and treatment choices regarding his/her life, illness and death

Even if the child is a person in all respects, entitled to fundamental rights such as the right to life, dignity, freedom of expression and equality, it must be considered that the capability to autonomously exercise such rights is acquired progressively with age and maturity and is affected by many other factors, as indicated in Right No. 3.

Express his/her feelings, wishes and expectations, and have these taken into account.

The child must be allowed to express all emotions and feelings experienced during the illness and in the final stages of life. The family and healthcare team must be able to recognize them, accept them and provide appropriate answers.

Have his/her cultural, spiritual and religious principles respected and receive spiritual care and support in accordance with his/her wishes and choices.

Regardless of nationality, ethnic, cultural and religious background, the child’s cultural values must be respected without infringing the child’s best interests. The child must be encouraged to remain an integral member of the original family unit.

Have a social and relational life suitable to his/her age, condition and expectations.

All of us live as part of a society with social interactions and relationships with other people that are essential to life and personal growth. Children, even those who are very young and critically ill, have social needs that must be recognized and properly addressed so that they do not feel abandoned, become isolated, and experience a “social death” in anticipation of their “physical death”.

Be surrounded by family members and loved ones who are empowered in organizing and providing care for the child, and supported in managing the emotional and financial burdens that arise from the child’s condition.

For children the presence of parents, siblings, family members and loved ones is essential to maintain and promote their well-being, to protect them, and to satisfy their need to feel loved.

Be cared for in an appropriate setting for his/her age, needs and wishes, and which allows the closeness and participation of the family.

The care setting has a significant impact on the life of the child and family.

Have access to child-specific palliative care services that respect the best interest of the child, avoiding both futile and excessively burdensome practices and therapeutic abandonment.

Caring appropriately for a child during the end-of-life phase is a challenging balance between therapeutic abandonment and overzealousness. Child-specific palliative care services can provide an appropriate solution.

Duties

It is a duty to:

Respect the child’s personality, individuality, values, life story and daily routine by providing appropriate support and thereby enabling the child to feel alive and present until the end of life.

Practically: The child should be carefully listened to in order to avoid neglecting simple but effective utterances (e.g., “I will go to a place where none of you have been …”).

Always safeguard the child’s dignity through respectful behavior even if the child is in a state of partial or complete unconsciousness due to the progression of the disease and/or treatments.

It is a duty to:

Provide palliative care services delivered by dedicated and adequately trained multiprofessional and interdisciplinary care teams.

Train caregivers not only in specific professional skills but also in how to work as a team and in awareness of and respect for the ethical principles underlying this type of care.

Assess the presence and level of pain and other symptoms causing suffering using specific tools adapted to the child’s age and condition.

Provide effective prevention for foreseeable symptoms and adequate treatment for those already present, with particular attention to pain.

Propose therapeutic strategies that respect the child’s autonomy, dignity, social life, circadian rhythms and privacy, and avoid futile, invasive, painful and burdensome procedures.

Prescribe palliative/terminal sedation in the presence of symptoms unresponsive to treatment.

Practically: “I want to go to school, to play, to stay home, … to maintain my normal life.” This is the explicit wish of the child translated in this duty.

It is a duty to:

Communicate with the child by providing understandable information about diagnosis, prognosis and treatment (taking into account that both verbal and nonverbal communication must be tailored to individual needs and circumstances), permit an ongoing dialogue and allow time and space for listening.

Essential aspects of communication are:

to duly consider all the factors that can influence the child’s understanding of life and death

to evaluate the child’s capability to understand and willingness to be informed

to share decisions with and help the family in the choice to inform the child

to find an agreement within the care team concerning methods and content of communication

to use both verbal and nonverbal communication appropriate to the circumstances

to give easily comprehensible information and answers, allowing time and space for any questions (about illness, trajectory, adverse events), fostering realistic hopes and providing reassurance about the future perceived by the child.

Practically: “The only people who talk to me are my friends.” This is indicative of communicative failure on the part of the adult people around the child.

It is a duty to:

Listen to the child, regardless of age, and offer opportunities for verbal and nonverbal expression concerning possible choices and treatment options.

Bear in mind that the child is a member of a family and consider the way in which decisions have been made and will be made in that family.

Consider that in the case of very young children, parents, if properly supported, are an essential aide for understanding the child’s wishes and treatment preferences.

Recognize that parental authority gradually diminishes as the child’s competence increases.

Endeavor to resolve possible divergences between the child’s wishes and those of the family, bearing in mind that the child’s best interest must prevail.

Practically: “I have antennae and the mystery scares me.” The child wants to be included in the disease process and feels fully alerted.

It is a duty:

For family members: to be able, within their specific aptitudes and competencies, to provide emotional support to the child, to recognize both expressed and unexpressed feelings, wishes and expectations.

For the healthcare team: to be trained, according to their professional role, to recognize, value and support the child’s feelings and emotions.

For people close to the family: to help them in supporting the child and protecting his/her vulnerability.

To help the child live the present time with his/her own projects and expectations and be encouraged to express his/her emotions through activities such as art, play, etc.

Practically: “Who do you want me to introduce you: a soccer player? A singer?” “No, I want to have with me Mrs. Antonia, the keep-cleaning woman of my room!”

It is a duty to:

Consider the best interest of children of all ages and in all circumstances in a way that respects and sustains the cultural, spiritual, religious and family values, which are the mainstays of individual identity.

Allow the child and family to express their emotions and suffering according to their own culture and religion.

Use cultural mediators to ensure that the child and family of any ethnic group or language can properly express their needs.

Be aware of and support the child and family’s spiritual needs according to their cultural models and ethnic traditions.

Create an environment/setting during the final stages of illness where the child and family can live and express their practices and rituals linked to death and mourning according to their own cultural and spiritual orientation.

Practically: “Please, let me go to Lourdes.”

It is a duty to:

Encourage and reinforce the child's interaction with his/her environment through appropriate planning and organization.

Facilitate and maintain the child’s relationships through the rehabilitation, support and reinforcement of his/her motor, sensory, cognitive, communicative and social skills.

Offer the child appropriate recreational tools, settings and activities, and create opportunities for play and socialization.

Allow the child to continue his/her educational process, either through school attendance or other educational and cultural activities.

It is a duty to:

Respond to the child’s need for the presence of family members and loved ones according to his/her wishes.

Provide the family with constant, timely and detailed information about the prognosis and the clinical situation.

Listen to, educate and support the parents in caring for their child, helping them maintain their parental role.

Provide all the family members, including siblings, with the necessary psychological, emotional and spiritual support throughout the disease process, death and into bereavement.

Help the family to overcome any financial, social and employment issues including access to legal support and possibly involving voluntary associations and charities.

Practically: Tenderness (poem by Marcello, 7 years old)

I see your eyes

like fires

lit in the night;

they’ve cried

they’ve loved

they’ve laughed,

these eyes of yours.

They’re loving

they’re pure

they’re sincere

like my special toy.

I love them

I feel them

imprinted in my heart,

these eyes of yours.

Today I find them

tired, yes …

but always

tender

Believe me, mom.

It is a duty to:

Allow the child and family to choose the care setting for end-of-life care.

Ensure the same quality of care and support, regardless of the setting, by providing flexible interventions adapted to the different circumstances.

Propose and facilitate, whenever possible, end-of-life care in the family home with appropriate support for coping with the child’s illness and death.

If care delivery in the home is not possible, ensure that the child is cared for in a setting appropriate for his/her age and that permits the constant presence of family members and loved ones.

It is a duty to:

Ensure access to palliative care expertise that is specific to the care of children, continues to provide health care support (even when cure of the underlying condition is no longer possible), and guarantees that medical interventions are only ever carried out when their benefit to the child plausibly outweighs their harm.

Ensure the continuity and levels of care between settings (home, hospital, hospice).

Avoid inappropriately invasive or burdensome treatments that negatively impact the child’s quality of life and/or unnecessarily prolong suffering and the dying process.

The Charter will have achieved its purpose when every person caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept and embrace his or her death, ensuring due respect and dignity.

Veronica (15 years old), before dying:

It’s Important

What really matters in life is not so much

being able to value it

What really counts,

is being able to “embrace”

the moment when it finishes

Comment: Who can help to “embrace” this moment? The people around the child who take care of him or her. This is a will.

Discussion

When a child dies, it is a civil society’s duty to provide medical, psychological and spiritual support to the child and the child’s family. During the phase preceding death – a period characterized by moments of incredulity, anguish and uncertainty – the child has rights. These fundamental rights must be respected as they guarantee comprehensive protection for the child and the family. And we, as healthcare providers and persons, have duties that should be clearly expressed. The main goal of the Charter is not to provide a series of rules translated into legal principles, but to offer comprehensive recommendations that should be embraced by all those caring for a dying child.

Box 1 - Glossary

The terms used in this Charter for the Rights of the Dying Child are defined below:

Child: Every human being below the age of 18 years unless, under the law applicable to the child, majority is attained earlier. This term refers to an extensive range of individuals in every phase of life.

Family: Parents, siblings, other family members and any persons who share the responsibility of care and/or of the physical, psychosocial and spiritual development of the child or is close in care and affection. This term also includes legal guardians.

Care team members: All healthcare professionals providing care for the patient at home, in the hospital or in a hospice.

Dying child: Any child who is in the terminal phase of life when death is inevitable.

End of life: The period before death during which the clinical condition is severely compromised and changes in vital signs indicate that death is imminent.

Legal capacity: The possibility of every human being to exercise rights and responsibilities. By existing, every individual possesses this capacity regardless of the duration of his or her life.

Capacity for discernment and decision-making: The patients’ capacity to freely express opinions on issues that concern them; children’s age and maturity should be taken into account.

Pediatric palliative care: The active total care of the body, mind and spirit of the child and family. It requires a broad multidisciplinary approach that alleviates the child’s physical, psychological and social distress. It includes family members and makes use of available community resources.

Quality of life: The subjective perception of one’s life in the sociocultural context and in the context of the values belonging to the environment in which he or she lives and in relation to his or her own needs, desires, concerns, expectations and goals.

Pain: A sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage. The term therefore expresses not only physical pain, but also the suffering that accompanies it and that is generated, maintained and persists even in the absence of tissue damage.

Palliative/terminal sedation: A carefully targeted therapy aimed at controlling, reducing or eliminating the suffering due to intractable symptoms: it involves the pharmacological reduction of awareness, even to unconsciousness.

Disclosures

Financial support: No specific support was received for this work.
Conflict of interest: The authors have no conflicts of interest to disclose.
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Authors

Affiliations

  •  Pediatric Palliative Care and Pain Management Service, Department of Women’s and Children’s Health, Padua University, Padua - Italy
  •  AGMEN FVG Nursing Home and Hospice Pineta del Carso, Duino Aurisina (Trieste) - Italy
  •  San Gerardo Hospital, MBBM Foundation, Monza - Italy
  •  Palliative Care Unit, Carlo Poma Hospital, Mantua - Italy
  •  G. Gaslini Institute, Genoa - Italy
  •  Ethics Committee for Pediatric Clinical Practice of the Veneto Region, Padua - Italy
  •  Deputy Distric Attorney at the Juvenile Court of Piedmont and Valle d’Aosta, Turin - Italy
  •  Family pediatrician, Verona - Italy
  •  Ministry of Health, Rome - Italy
  •  Maruzza Lefebvre D’Ovidio Foundation, Rome - Italy

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