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Review Article
Pediatric Palliative Care
Clin Pediatr Hematol Oncol 2020;27:55-60.
Published online April 30, 2020
© 2020 Korean Society of Pediatric Hematology-Oncology

Min Sun Kim

Department of Pediatrics, Seoul National University College of Medicine, Seoul, Korea
Correspondence to: Min Sun Kim
Department of Pediatrics, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 03080, Korea
Tel: +82-2-2072-4192
Fax: +82-2-743-3455
E-mail: mskim81@snu.ac.kr
ORCID ID: orcid.org/0000-0001-5323-9857
Received April 6, 2020; Revised April 22, 2020; Accepted April 23, 2020.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
In modern medical environment, death rates of newborn babies, children, and adolescents have decreased while the survival rate of life-threatening diseases has increased drastically. The relative 5 year survival rates of pediatric cancer have increased to over 80% in 21st century, however, the prognosis of certain types of pediatric cancer still remains unfavorable, causing patients and families face physical, psychosocial, and spiritual challenges due to complications as well as intensive treatments such as stem cell transplantation. Pediatric Palliative Care (PPC) is a specific system with a philosophy of care to respond to psychosocial and spiritual needs of patients and families as well as control pain and symptoms offered in order to satisfy unique and special needs of children and adolescents living with life-threatening disease, to ensure health-related human rights of children and adolescents. Essential elements of PPC, communication with the child or adolescent patient and family, pain and symptom control and care for the time of death and bereavement have been described.
Keywords: Palliative care, Pediatric palliative care, Cancer survivor
Introduction

Since modern medical science and technology advanced, death rates of newborn babies, children, and adolescents have decreased while the survival rate of life-threatening diseases has increased drastically. Particularly, the advancement of pediatric cancer care has been outstanding: The relative survival rate of pediatric cancer for 5 years increased from 54% in the 1990s to 80% in 2012; and the relative survival rate for 10 years also increased from 52% in the 1990s to 71% in 2007 [1]. Despite such advancement in the field of pediatric cancer care, however, the prognosis of certain types of pediatric cancer remains extremely unfavorable. In addition, patients and families face physical, psychosocial, and spiritual challenges due to complications as well as intensive treatments such as stem cell transplantation.

Pediatric Palliative Care (PPC) is offered in order to satisfy unique and special needs of children and adolescents living with life-threatening disease [2]. This is a specific system that reflects a philosophy of care in order to respond psychosocial and spiritual needs of patients and families as well as control pain and symptoms (according to the definition of American Academy of Pediatrics). The World Health Organization emphasized that guaranteeing the right to receive high quality PPC with no limitations to such factors as age, diagnosis, place, and so forth is essential to ensure health-related human rights of children and adolescents [3].

As PPC reflects characteristics of children and adolescents, it has the differences from palliative care for adults: While adult palliative care is mainly for cancer patients, children with a wide range of conditions could benefit from palliative care. In 1997, one U.K. association of pediatric palliative care classified pediatric diseases requiring palliative care as in the table below (Table 1) [4]. The complex chronic condition (CCC), another category of finding children in deed of palliative, is defined as any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care, and probably some period of hospitalization in a tertiary care center [5]. According to ICD codes, there are 10 CCC categories: nervous and neuromuscular system disease, respiratory system disease, renal and urinary system disease, gastrointestinal system disease, blood and immune system disease, metabolic disease, inherent and hereditary disease, malignant disease, and premature and neonatal diseases.

Table 1 . Categories of life-limiting and life-threatening conditions.

CategoryExamples
1Life-threatening conditions for which curative treatment is feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to lifeCancer, irreversible organ failures of heart, liver, kidney
2Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activitiesCystic fibrosis, Duchenne muscular dystrophy
3Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many yearsBatten disaese, mucopolysaccharidoses
4Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature deathSevere cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs and a high risk of an unpredictable life-threatening event or episode


Fifty-five percent of deaths among children and adolescents occur in infancy, and 2/3 of infant deaths occur in the neonatal period. Major causes of infant deaths are related to congenital malformation, chromosome aberration, premature birth, and so forth. Major causes of death among children include cardiovascular disease, inherent/genetic disease, respiratory disease, neuromuscular disease, and so forth. In one previous study conducted in Korea regarding the population in need of palliative care, the number of children and adolescents under 20 who died in Korea between 2005 and 2014 was 36,808, 34% of whom (12,515) died from CCC [6].

The trajectory of serious diseases in the child and adolescent period is different from one another and the number of patients with each disease is very small. Parents often struggle with difficult decisions as they go through uncertain situations. Therefore, it is important to provide open and honest information and guide patients and families to find and fulfil their goal of care at each step; seeking a cure, extending the life through intensive care; and focusing on alleviating symptoms [7]. When such decisions are to be made, factors as patient symptoms, quality of life of a patient and their family, and disease prognosis are taken into consideration. As children and adolescents are in a stage of physical, mental, and social development, a customized approach needs to be adopted in consideration of their developmental states. As patients are minors, most decisions are made mainly by parents but importance of collaborative communication with children should not be underestimated.

Essential Elements of Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual [8]. The following are specific aspects that need to be taken care of in palliative care for children and adolescents [9]:

1) Physical matters

To examine pain and symptoms;

To discuss and establish plans for drug or non-drug treatment;

To decide and prepare medicines to be used at home after discharge from the hospital if applicable;

2) Psychosocial matters

To check fear and anxiety that the patient and family feel; assure that they will never be abandoned whatever case it may be; and address worries of siblings and other extended family members of the patient;

To check how the patient and family communicate and to discuss with them the treatment plan in line with their dispositions;

To communicate with the patient in consideration of his/her communication level; discuss the matter of death with the patient, if necessary, according to the patient’s developmental stage;

To check past experiences regarding deaths or accidents and consider them in making plans; if necessary, to consult with a psychiatrist or a specialist at a psychological assistance center; and

To discuss and plan how to support the family after the patient’s death if the likelihood of death is high.

3) Spiritual matters

To examine spiritual conditions of the patient and family; Spirituality is a comprehensive concept that includes not only prayer or religious thoughts of the patient and family but also their hopes and dreams, meanings of life, valuation, thoughts about death and the state after death, and so forth.

If the patient and family want, it may be helpful to explain the patient’s condition to a spiritual care provider on whom the patient relies.

Assistance needs to be provided so that the patient can think about the meaning and purpose of life.

4) Discussion on advance care plans

To check individuals who need to participate in decision-making; include major decision-makers in discussion; and facilitate discussion among family members;

To provide the patient and family with information on the current condition of disease so that they can understand it properly.

To coordinate opinions among medical teams and deliver their opinions in accord to the patient and family if it is a complicated medical situation that should involve more than one medical team;

To examine the impact of the disease on the quality of life, various functions, and activity of the patient and to make plans accordingly;

To estimate the approximate period left before death;

To consult with the medical staff regarding goals (complete recovery, uncertain results, pain alleviation) being or to be provided and then to make decisions through discussion with the family;

To make plans for specific treatment methods and measures in consideration of changes in the disease state; and

To make plans regarding physical changes and symptoms in the end of life; to share emergency contacts in case of death at home.

5) Practical matters

To share with the medical staff treatment plans including goals of treatment, advance care plans, and so forth;

To check the place of treatment that the patient and family prefer and make arrangements so that the patient can stay at the preferred place;

To make plans regarding the place of death, procedures to be taken in case of death, contact information, and so forth;

Education and instructions on relevant institutions such as the patient’s school;

To prepare for situations that may occur to the patient (plans for medical devices, home care service, etc.); and

To assess socioeconomic burdens and to coordinate resources in need such as social welfare service and economic consultation.

Communication with the Child or Adolescent Patient and Family

Although it is well known that a patient with life-threatening condition needs palliative care, introducing palliative care services to a patient in actual clinical settings is a challenge to both the treatment team and the palliative care team. In this regard, it is important to remember that palliative care is not to prepare for the moment of death. The proper timing of introducing a palliative care to a patient and family may be different depending on the situation. First, palliative care may be introduced upon a diagnosis or at a time as early as possible as part of various teams necessary for the patient. Its major roles such as pain and symptom control and preserving quality of life may be explained. Second, a palliative care team may be introduced if the likelihood of complete recovery is decreasing due to disease deterioration, complication, and so forth. In this case, the patient and family can be helped to consider important values to them or a way of alleviating symptoms while continuing the treatment for complete recovery. If the medical staff introduces a palliative care team in this case, the following sentences may be used:

“In view of the treatment to be provided, we would like to introduce a team that will assist us with the medical care of ○○ (patient’s name). This team will put forth every effort to grasp and address various unpleasant symptoms, worries, and pains that may occur in the continued process of treatment. It is called as a palliative care team. This team will assist us so that we can focus on the treatment of ○○.”

Finally, if a treatment for complete recovery seems impossible, palliative care may be introduced as a hospice that will focus on helping the patient have a comfortable time on the eve of death. If a palliative care team is introduced late, the patient and family may have to bear a significant psychological burden since they need to form a new relation with the medical team while already going through emotional difficulty. If possible, it is vital for the existing medical staff to take the lead of general care plans continually in cooperation with the palliative care team. Even if the patient is transferred to another medical center and meets a new team, the previous and present medical centers need to communicate continually so that the care plan does not discontinue.

In the process of treatment, it is essential to thoroughly understand the goals of treatment that the patient and family keep in mind and communicate with them continually regarding both benefits and burdens of the treatment process. This is called advance care planning, and it includes not only life-sustaining treatment but also comprehensive discussion on goals and directions of treatment based on the current medical state and values of the patient’s family. One aspect to be noted in conversations with the parents of a child or adolescent patient for decision-making is that the parents may continue talking about the possibility of complete recovery even if they understand and admit the worsening prognosis of the patient. If the parents’ talking about the possibility of complete recovery is understood as a denial and explanation on the worsening prognosis is given continually, it might be difficult to continue the communication. Since the parents’ expectation and hope regarding the disease progress change continually, it is vital to understand that process.

In conversations with a patient and his/her family, nonverbal communication is as important as verbal one. If possible, empathy needs to be expressed with eye contacts, appropriate facial looks, nodding, and so forth. If a patient or family member is seated in a ward, it is recommended to ask if it would be fine to seat and talk beside him or her, rather than standing while talking. Since not only the medical staff but also a patient or family can relate their thoughts with nonverbal expressions, attention must be paid to them. If they keep averting the gaze or casting glances during a conversation or keeps a distance from the medical staff, it may indicate that they are stressed out. In such a case, it is recommended to directly ask them if they feel uncomfortable and it would be better to meet later.

Pain and Symptom Control

Pain is a major cause that lowers the quality of life among child and adolescent patients with serious disease [10]. According to many studies, a lot of child and adolescent patients are not provided with appropriate pain controlling care by the end of their life. If pain or symptoms are not controlled properly, the life of quality not only of the patient but also of family members can be affected significantly. It is of great importance, therefore, to assess and control pain of children.

The principle of assessing and treating pain among child and adolescent patients is not significantly different from those in adult patients (Table 2). In the case of children and adolescents, however, it is vital to recognize patients’ expressions in line with the developmental stage and assess pain comprehensively in consideration of sleep conditions and emotional changes and in close communication with the parents. Neuropathic pain is quite common among child and adolescent patients, but it is known that such pain is often neglected or not properly treated by the medical staff. While the basis for neuropathic pain control in child and adolescent patients with cancer has yet to be established, a gradual approach in steps may be utilized [11]. Additionally, an integrated approach including rehabilitation and non-drug treatment needs to be included in that process of care.

Table 2 . Starting dose of opioids in children aged 1-12 years.

MedicationRouteDosage
MorphineOral1-2 years: 0.2-0.4 mg/kg q4 hr
2-12 years: 0.2-0.5 mg/kg q4 hr (max 5 mg/dose)
IV/SC1-2 years: 0.1 mg/kg q6 hr
2-12 years: 0.1-0.2 mg/kg q4 hr (max 2.5 mg/dose)
IV infusion0.02-0.03 mg/kg/hr
OxycodoneOral0.125-0.2 mg/kg q4 hr (max 5 mg/dose)
FentanylIV1-2 μg/kg, every 0.5-1 hr
IV infusion1 μg/kg/hr
HydromorphoneOral0.03-0.08 mg/kg q3-4 hr (max 2 mg/dose)
IV0.015 mg/kg q3-6 hr


Experiencing difficulty in breathing due to a tumor expanded to the lungs, complications after treatment, associated infections, and so forth causes a patient to fear. In addition to a drug therapy that facilitates oxygen supply and controls symptoms of underlying problems, using narcotic analgesics (opioids) and benzodiazepines may be considered. Since other symptoms such as anxiety, depression, and sleep disorder may be involved, it is necessary to apply medications and other non-drug therapies in consideration of such symptoms and interactions with medications being currently used.

Care for the Time of Death and Bereavement

When the likelihood of death within months is high, patients and family members want to share time together. It is important to talk sufficiently with patients and parents about where and how they want to spend the time before the child’s death, and the palliative care team needs to find and suggest feasible methods to help them. In some cases, families intend to stay with the patient at the last moment at home but later return to the hospital when the moment is very near due to the overwhelming feelings. As this response is quite understandable, it should be avoided to make the family feel as if they fail.

It is vital to explain common steps of a dying process to the parents in advance and to check what they want to know. In most cases, physical changes occur gradually in sequence, and the medical staff needs to help the parent accept these as a natural process of death. It is recommendable to explain the meanings of symptoms that may occur in a dying process and how to control them. If a family decides to spend the time before death together with the child at home, it will be of great help for an experienced expert who has established a trust relationship with the family to be available 24 hours a day and provide physical and emotional counseling. If a doctor or home health aide visits the patient’s home to check symptoms and provides explanation, medications, and care service, it will be helpful not only in terms of medical care but also for the patient and family to dispel a feeling of isolation.

The purpose of palliative care is to provide an integrated service and thus enhance the quality of life of the patient and family by alleviating the pain that a patient and family go through, facilitating their decision-making process, and making arrangements so that the necessary care services can be provided wherever a child may be.

In July 2018, the pilot project of PPC was initiated with the support from the Ministry of Health and Welfare in Korea. Since then, the specialized palliative care teams at 4 tertiary hospitals have provided consultation and education services. Such care services will be expanded to 7 organizations by 2020. For a specialized palliative care team to help a child or adolescent patient and his/her family to experience better treatment in cooperation with the entire medical personnel applying an appropriate palliative care approach, the efforts of an individual medical center need to be supported by a stable financial system, professional curriculum management, and governmental policies and strategies.

Conflict of Interest Statement

The author has no conflict of interest to declare.

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October 2020, 27 (2)
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  • Min Sun Kim