Rights of the Dying Child: The Nurses' Perception

Abstract

Aim:

The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the implementation of those principles in hospital.

Materials and Methods:

A multicenter, cross-sectional study to observe the nurses' positions about the 10 rights outlined in the Charter, using an online questionnaire in 5 pediatric hospitals in northern Italy.

Results:

A total of 119 nurses (44.9%) completed the questionnaire. The majority (range: 86.6–100%) expressed their agreement with the Charter's principles (Likert ≥4). Lower ratings were reported in Charter's principles implementation items (range: 42.9–89.1%). Being older and working in a smaller hospital lead the nurses to overlook the child's right to be informed and to be given the opportunity to make decisions about his/her own life and death (p = 0.02, p < 0.01). Postgraduate training induced greater awareness of the dying child (p = 0.01).

Conclusions:

This study highlights the value of the Charter of the Rights of the Dying Child as a reference guideline for nurses working in pediatric hospitals. Better training is important to improve the nurse's communication skills and the pediatric palliative care should be offered to all families that have a child with incurable disease mostly in the end of life.

Background

Child's death, a devastating event for all involved, has become the subject of intense debate in our society because of the complex clinical, psychological, and ethical implications.^1,2 When an incurable illness progresses and the child's death becomes imminent, healthcare professionals are frequently faced with difficult choices such as what and what not to do and how and where to care for the patient, all within the sphere of the child's best interest.³

The medical staff working in hospital pediatric wards does not have the appropriate competences to face the clinical, psychological, and ethical dilemmas associated with the death of a child and to make decisions regarding appropriate care and quality of life. Frequently, ethical dilemmas and responsibilities assumed during the decision-making process by nurses, if not properly shared or supported by the team, may cause mental distress and burnout.^3,4 Approximately 1–2% of children admitted to pediatric hospital die. About 71–83% of them die in pediatric intensive care units (PICUs), and 78% of them are intubated and dependent on respiratory support at the time of death.^5–8 A study in Italy published in November 2013 reported that every year 10,000 children are admitted to PICUs where 4.3% die.^9,10 However, because of the particularity and complexity of this situation, the ethical dilemmas and difficult decisions involving the child and family members, the care provided may not always be appropriate. It is important these children are involved in a pediatric palliative care (PPC) program. Providing end-of-life care to children is most ideally achieved by initiating palliative care at the time of diagnosis, advocating supportive care throughout the illness trajectory, and implementing home care or/and hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric patients are the prioritization of providing holistic care and management of disease-based symptoms.^11–14

It is very important that children and their families in the end of life have a physical, psychological, and spiritual support to ensure the best quality of life and a dignified death.^15,16

In September 2012, a group of professionals working with children affected by incurable illness in Italy launched a project, supported and promoted by the Maruzza Lefebvre D'Ovidio Foundation, to formulate a charter of rights for children approaching the end of their lives. The goal was to develop a document used by professionals and families caring for children in the terminal stages. The aim of the Charter of the Rights of the Dying Child was to provide an effective tool for medical staff working with pediatric patients, for upholding a child's right to respect and provide dignity in death.^17–20 The Charter is divided into three parts: the list of the rights themselves, a series of duties that ensue from each of these rights, and pertinent explanatory notes for their correct interpretation and implementation (Table 1).

Table 1.

Charter of the Rights of the Dying Child

Every dying child has the right:

1. To be considered as a “person” until death regardless of age, location, condition, and care setting

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

3. To be listened to and properly informed about his/her illness with due consideration to his/her wishes, age, and ability to understand

4. To participate, on the basis of his/her abilities, values and wishes, in care choices regarding his/her life, illness, and death

5. To express his/her feelings, wishes, and expectations and have these taken into consideration

6. To have his/her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his/her wishes and choices

7. To have a social and relational life suitable to his/her age, conditions, and expectations.

8. To be surrounded by family members and loved ones who are empowered in the organization and provision of the child's care and who are supported in the management of the emotional and financial burdens that arise from the child's condition

9. To be cared for in a setting appropriate for his/her age, needs, and wishes, and that enables the family to be close and involved

10. To have access to child-specific palliative care services that respect the child's best interest and avoid both futile or excessively burdensome practices and therapeutic abandonment

Study aim

This study examines the nurses' degree of agreement with the principles outlined in the Charter. The study shows the nurses' perception of the implementation of the Charter's principles in their pediatric hospital setting to ensure the best quality of life in the end-of-life stadium.

Materials and Methods

A multicenter, cross-sectional study was performed to observe the nurses' positions and their ideals about the 10 rights outlined in the Charter. The survey was carried out using a specifically prepared, anonymous, online questionnaire for nursing staff working in five pediatric hospitals in northern Italy (Padua, Verona, Rovigo, Treviso, and Vicenza).

The questionnaire comprised the following:

a personal details section;

21 questions regarding the nurse's opinion on:

– the 10 rights outlined in the Charter (Do you agree with what is expressed by this right?);

– the implementation of each rights outlined in the Charter in the pediatric hospital wards where the nurse works.

The section referring to the implementation of article n.10 (“the dying child has the right to have access to child-specific palliative care services that respect the child's best interest and avoid both futile or excessively burdensome practices and therapeutic abandonment”) was divided into two parts: question 10A (Is it possible to receive pediatric palliative care in the unit where you work?), question 10B (Do situations of burdensome therapeutic practices and futile interventions ever occur in the hospital where you work?). The participants were asked to express their answers using a Likert scale (with responses ranging from 1 = totally disagree to 5 = completely agree).

The questionnaire was test run on a sample group of 20 nurses who were asked whether they considered it easy to understand and whether they had any amendments to suggest. As all those who were questioned considered it positively, it was used in its original form.

Statistical analysis

The qualitative variables were described using absolute and relative frequencies; the quantitative variables were expressed as median ± interquartile range.

Pearson's chi-squared test was used to verify the independence of two qualitative variables. The probability for the inferential tests was set at <5%.

Results

A total of 119 (44.9%) of the 265 nurses working in different hospitals involved in the survey completed the questionnaire. The characteristics of the respondents are outlined in Table 2.

Table 2.

Characteristics of the Respondents

Variable	Feature	Frequency (%)
Gender	Male	7 (5.9)
Gender	Female	112 (94.1)
Hospital	Padua	43 (36.1)
	Verona	44 (37)
	Rovigo	15 (12.6)
	Treviso	12 (10.1)
	Vicenza	5 (4.2)
Training	University degree	97 (81.5)
Training	Postgraduate	22 (18.5)

Variable	Median ± IQR
Age, years	42 ± 12.5
Total work experience, years	19 ± 14.5
Work experience on current ward, years	8 ± 10.5

IQR, interquartile range.

The majority of nurses expressed their agreement (range = 86.6–100%) with the principles in the Charter (Likert values ≥4). On the contrary, the ratings with regard to implementation of the Charter's principles in the nurse's work setting were lower and more variable (range = 42.9–89.1%).

About right n.3 (To be listened to and properly informed about his/her illness), 7.6% of the nurses declared that they did not entirely agree, and 13.4% did not entirely agree with right n.4 (To participate… in care choices regarding his/her life, illness, and death). Moreover, the nurses felt that the principle expressed in right n.3 (46.2%) and in right n.4 (56.3%) was often not applied in their hospital setting.

As far as right n.10 was concerned, the first question (10A:…to receive palliative care) received an affirmative response from 77.30% of the respondents. In the second question (10B…situation of burdensome therapeutic practices…), 42.9% declared that these were still being carried out in the ward where they worked (Table 3).

Table 3.

Nurses' Agreement with the Principles of the Charter and Their Perception of Its Application in the Hospital Where They Work

Articles of the Trieste Charter	Agreed (≥4), frequency (%)	Disagreed (<4), frequency (%)	Applied (≥4), frequency (%)	Little applied (<4), frequency (%)
Article 1	119 (100)	0 (0)	106 (89.1)	13 (10.9)
Article 2	119 (100)	0 (0)	97 (81.5)	22 (18.5)
Article 3	110 (92.40)	9 (7.6)	64 (53.8)	55 (46.2)
Article 4	103 (86.6)	16 (13.4)	52 (43.7)	67 (56.3)
Article 5	118 (99.2)	1 (0.8)	86 (72.3)	33 (27.7)
Article 6	118 (99.2)	1 (0.8)	94 (79.0)	25 (21.0)
Article 7	118 (99.2)	1 (0.8)	89 (74.8)	30 (25.2)
Article 8	119 (100)	0 (0)	96 (80.7)	23 (19.3)
Article 9	119 (100)	0 (0)	103 (86.6)	16 (13.4)
Article 10A	119 (100)	0 (0)	92 (77.3)	27 (22.7)
Article 10B			Yes 51 (42.9)	No 68 (57.1)

Results were obtained analyzing associations between the answers and the variables such as age (dichotomized for values ≤42 years), sex, type of hospital, which were defined as A or B (A: Padua and Verona hospitals—pediatric referral hospitals; and B: Rovigo, Treviso, and Vicenza hospitals—General Hospital), years of work experience (dichotomized at the median of 19 years), and professional training (university degree/postgraduate).

The following results were found to be significant (p < 0.05) (Table 4).

Table 4.

Association Between the Articles of the Charter and the Nurses' Age, Training, and Type of Hospital Where They Were Working

Articles of the Trieste Charter	Response	Variables
	Applied (≥4)	Age ≤42 years (n = 65), n (%)	Age >42 years (n = 54), n (%)	p	University degree (n = 97), n (%)	Postgraduate (n = 22), n (%)	p	Hospital A (n = 87), n (%)	Hospital B (n = 32), n (%)	p
	Little applied (<4)	Age ≤42 years (n = 65), n (%)	Age >42 years (n = 54), n (%)	p	University degree (n = 97), n (%)	Postgraduate (n = 22), n (%)	p	Hospital A (n = 87), n (%)	Hospital B (n = 32), n (%)	p
Article 3: To be listened to and properly informed…	Applied							38 (43.7)	26 (81.2)	<0.001
Article 3: To be listened to and properly informed…	Little applied							49 (56.3)	6 (18.8)	<0.001
Article 4: To participate in care choices	Applied	22 (33.8)	30 (55.6)	0.028	48 (49.5)	4 (18.2)	0.01	30 (34.5)	22 (68.8)	<0.001
Article 4: To participate in care choices	Little applied	43 (66.2)	24 (44.4)	0.028	49 (50.5)	18 (81.8)	0.01	57 (65.5)	10 (31.2)	<0.001
Article 5: To be able to express feelings that are taken into consideration	Applied							56 (64.4)	30 (93.8)	<0.001
	Little applied							31 (35.6)	2 (6.2)	<0.001
Article 7: To have a social and relational life	Applied	43 (66.2)	46 (85.2)	0.003
Article 7: To have a social and relational life	Little applied	22 (33.8)	8 (14.8)	0.003
Article 8: To be surrounded by family members … loved ones	Applied	47 (72.3)	49 (90.7)	0.021				66 (75.9)	31 (96.9)	0.05
Article 8: To be surrounded by family members … loved ones	Little applied	18 (27.7)	5 (9.3)	0.021				21 (24.1)	1 (3.1)	0.05

Indeed, it is necessary to underline that the variable age (> or ≤42 years) is statistically significant about right n.4 (to participate in care choice) with p = 0.02, also about right n.7 (To have a social and relational life) with p = 0.03, and then about right n.8 (To be surrounded by family members and loved ones) with p = 0.02.

Another important result refers to variable professional training that has significance with right n.4, with p = 0.01.

Discussion

The sample of nurses who participated in the survey declared that they were in agreement with what each of the rights stated in the Charter of the Rights of the Dying Child, such as being informed, receiving appropriate care, and having his/her cultural, spiritual, social, and psychological beliefs respected. These principles are in accordance with the Italian law (38/2010) and reflect the guidelines about a correct project of PPC. The nurses agreed with the importance of including the child in a PPC program and promoting training about PPC to ensure proper care taking of the patient and family. The study results show that, although the respondents' level of agreement with regard to the rights was very high, the nurses were not entirely convinced that children's rights are always respected in their hospital setting. The perception of failure appeared highest with regard to the implementation of rights relative to protecting children's decision-making capacities or, in other words, their right to be informed and to express their wishes and expectations (rights n.3 and n.4), the right to have access to palliative care and to reject futile, excessively burdensome practices and, at the other extreme, the right to be protected from therapeutic abandonment (right n.10). Scientific literature and various international charters for the rights of the child and the codes of physicians and nurses highlight the importance of honest communication depending on the patient's age and comprehension so that he/she has no doubts that could impede his/her awareness about the illness. On the contrary, the nurse may feel inadequate in communicating with the dying child particularly during the final stages of the illness.^21–23

Right n.4 expresses the right of the dying child to participate in choices regarding his/her life, illness, and death. The study shows a greater tendency of the family's autonomy in making choices rather than permitting the child to have his/her say. According to numerous international sources, respect for this right should depend on the child's age and level of maturity. The nursing staff should be able to evaluate the level of the child's maturity and establish a trusting relationship; this will make it possible to understand how much the child desires to know and to be involved in the decisions that are being made.⁴

Right n.10 expresses the right of the dying child to have access to PPC program and to avoid futile, invasive treatments and therapeutic abandonment. The nurses declared that they were aware of situations in which therapy was burdensome and futile. Many scientific studies recommend that end-of-life decisions be made together with the entire medical team in accordance with the wishes of the parents and, whenever possible, with that of the patient him/herself.^12,13 Parents should be appropriately informed so that they are able to make choices without misgivings about the future of their child. All the steps in the decision-making process should be registered in the patient's medical records so that treatments that are possible for the child's benefit are clearly outlined and the reasons for those choices are specified. According to study data, the nurses appeared to be uncomfortable in this type of situation probably because of inadequate information and training.

It is important to point out that the nurses who took part in the survey work in the pediatric sector of a specialized center for PPC that has been operating for more than 10 years. The dichotomy outlined by the nurses between their personal approval of the principles and their incomplete implementation in the pediatric wards seem to indicate that awareness about the activity of the PPC program is insufficient.

Analysis of statistically significant associations

The study demonstrated that the older respondents tended to report greater implementation of the Charter's principles than younger nurses (age > or ≤42 years). This could be explained by an uncritical self-referential attitude by the older nurses who, in view of their greater experience, are not inclined to have doubts about their work.

The variable professional training was found to be statistically significant only with regard to right n.4: nurses with postgraduate training declared that the child's right to participate in decisions regarding treatment and end-of-life care was rarely taken into consideration in their particular work setting. Finally, the nurses who worked in smaller nonspecialized pediatric hospital units (Rovigo, Treviso, and Vicenza) seemed to adhere to the principles expressed in the charter to a greater extent. As there is no evidence in relevant literature indicating that smaller hospitals work better than larger, referral hospitals, it is possible that this finding is linked to the management of fewer end-of-life cases.

Conclusions

The nurses who were interviewed expressed their approval of the rights outlined in the Charter of the Rights of the Dying Child. Some uncertainties were expressed regarding the rights and their application with regard to the child's right to be listened to and informed and to participate in futile treatments in their own work setting. Being older and working in a smaller hospital leads the nurse to overlook the child's right to be informed and to be given the opportunity to make decisions about his/her own life and death. On the contrary, postgraduate training gives the nurses a greater awareness about the lack of involvement of the dying child in hospital. The study indicates the value of the Charter as a reference tool for nurses working in pediatric hospital wards. Therefore, the nurses' training seemed to be significant to improve communication skills. In the hospital, PPC program should be offered to all families that have a child with incurable disease mostly in the end-of-life period. Nurses should have a global approach to identify all needs (physical, psychological, economic, and spiritual) of the families. Finally, there should be guaranteed PPC program in every hospital for children and families.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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