Clinical audit on "Evaluation of special issues in adolescents with cancer treated in an adult cancer setting": An Indian experience
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.105690
Source of Support: None, Conflict of Interest: None
Background: Adolescents with cancer form a distinct group with special care needs. These patients are often cared in an adult supportive care setting where the special needs of adolescents are not met.
Keywords: Adolescents, Cancer, Supportive care
Cancer is the leading cause of death by disease in the adolescent population. As the primary goal of treatment in adolescent population is almost always cure, the aspects such as symptom relief and quality of life are usually overlooked. Adolescents and young adults with cancer are a heterogeneous group, and management of this special group requires a broad-based interdisciplinary clinical team, which should include physicians oriented towards managing adolescent patients, specialist nurses, psychooncologists, and specially trained social workers. Adolescents with cancer have unique developmental, physical, and emotional needs, which are different when compared to adults with cancer. Due to overbearing presence and involvement of the family in a protective manner, communications of these needs are usually impeded. Most of the cancer care units are designed for adults, and they are not geared up to meet the supportive care needs of the adolescents. ,,
The purpose of this audit was to evaluate and identify special issues in adolescents with cancer and to determine whether these special needs of adolescent patients are met in an adult cancer setting. The study helps us to identify the gaps in care provision and suggests measures to bridge these gaps. The study provides baseline information about the diagnosis; clinical history, symptomatology, psychosocial issues, outcomes, and end of life care issues.
The aims of this audit are as follows:
This audit was a retrospective study of 10 adolescent patients randomly selected between January 2011 to December 2012 referred to the Department of Integrative Oncology, HCG Bangalore Institute of Oncology for symptom control and ongoing supportive care. Inclusion criteria are age between 10 and 19 years, the presence of malignancy, and at least three hospital visits.
All patient case notes were delivered from the Medical Records Department, and the auditors completed the audit in multiple sitting, having access to an Integrative Oncology Specialist for complex entries. The data were processed and tabulated using Microsoft Excel.
Among the 10 adolescents studied, there were 5 boys and 5 girls. Mean age was 13.2 years; the minimum age being 10 years and the maximum age was 16 years. Eight were school going, and two had discontinued schooling. Active parental involvement in care provision was seen in all cases studied, active sibling involvement in 8 out of 10 cases, and active grandparent involvement was seen in only 3 out of 10 cases.
Sarcoma was the diagnosis in 7 out of 10 cases studied, 2 were hematological malignancies, and 1 was a nasopharyngeal cancer. Three cases each were referred to integrative oncology by pediatric oncology and orthopedic oncology. Two cases each were referred by medical oncology and radiation oncology. Seven out of 10 cases were referred for management of pain; other three were referred for management of dyspnea, malignant wound care, and for ongoing supportive care, respectively. Among the 10 cases referred, 6 had already completed all disease-specific treatments and 4 were still undergoing disease-specific therapy.
On initial assessment, pain was the most common symptom noticed; seen in all of the 10 patients referred. Constipation in five cases, dyspnea in three cases, nausea and vomiting in two cases, and delirium was seen in one case.
In only 3 of 10 cases studied, there was evidence to suggest that the patient was involved in the care process and decision making. Identity issues were noticed in three cases, and peer group isolation was noticed in four cases; in rest of the cases, these issues were not explored. Three were aware of the diagnosis, but none was aware of outcomes and mortality. Anxiety and depression were noted in four cases. Body image issues were noticed in three cases, and in six cases, these issues were not explored. Sexuality issues were not explored in any of the cases studied [Table 1].
Most of the adolescents (8 out of 10) received continued support and care from the family. Disjointed family circumstances were noticed in two of the cases, and an issue of sibling rivalry was noted in one case. Spiritual and existential issues were not explored in the cases studied.
Among the 10 cases referred, 5 of them died, 3 are in remission, 1 patient is undergoing active disease-specific treatment, and 1 has progressive disease who is under ongoing supportive care follow-up. Out of the five patients who died, three died in the hospital and two at home. Do not resuscitate (DNR) orders were documented in all the patients who died in the hospital, and two of them were initiated under end of life care pathway (EoLCP - an Indian modification of Liverpool care pathway of dying). Of all, the hospital death intractable dyspnea were the major end of life symptom and two needed escalating doses of opioids and benzodiazepines for symptom relief. Among the two that died at home, one had major bleed and in other the terminal event is unknown.
Cancer in adolescence presents with diverse issues such as (a) unique epidemiology of disease presentation in the adolescence, (b) unique developmental tasks of adolescence related to physical and psychological maturation, and (c) unique area of health care provision in those group of patients who are not yet adults, but no long are children. 
Developmental stage has major effects across all domains of life. It influences our cognitive capabilities, comprehension of events, communication skills, problem-solving abilities, relationships, expectations, self-esteem, emotional stability, psychological strength, and coping skills. 
Adolescents with cancer will be achieving their developmental milestones in the midst of dealing with the stress of cancer and cancer treatment. Adolescence is the period of achieving autonomy, identity, self-discovery, developing own beliefs and values, and dreams and goals for the future along with pubertal changes and sexual growth. It is the time when an adolescents experience physical changes, body growth, and spurt of varied emotions. During illness such as cancer, it is difficult for the adolescent to achieve these milestones.
Physical changes due to cancer, cancer-related therapy, low counts, need for continuous physical and emotional support, overbearing presence of the family, changes in living circumstances, i.e., resting at home, and prolonged periods of hospitalization lead to major disruption in the life of an adolescent. The normalcy of home-school-playground is replaced by the home-hospital pattern leading to isolation from the peers, poor acceptance by the friends and teachers at school, always looked upon as a sick child leading to feelings of loneliness and despair which can further lead to depression.
The study by Cassano et al., (2008) which evaluated the perceptions of adolescents with cancer demonstrated that adolescents with cancer need to feel like normal teenagers and they want to have typical normal teenager experiences in the midst of their cancer treatment. Adolescents with cancer could gain support by sharing information on their own terms with other peers who will understand. The study also highlights the value in adolescents with cancer engaging in discussion about cancer with others who can truly relate to their experiences. Adolescents with cancer in hospitals or community want to be treated as teenagers first and cancer patients second. 
The adolescents based on the age distribution are classified as early, mid, and late adolescence, and they differ in their ability to perceive and cope with a life limiting illness [Table 2]. ,
The usual fears are related to loss of control, altered body image, and separation from peers, which could be dealt by providing control, involvement in treatment and related decision making, facilitating communication, facilitating normal environment, and facilitating social and psychological support.
The grief symptoms in adolescents are classified as follows:  [Table 3]
Encouraging participation in spiritual rituals, maintaining continued participation and contact with religious peer groups, and honest discussion of "God questions" and existential questions can prevent these distresses.
The other special issues seen in adolescents with cancer are as follows:
In this audit, the major gaps in care provision were given as follows: (A) Inability of the health care professionals and the team to identify and explore key issues such as sexuality, body image, and identity issues. (B) Peer group isolation as a major stressor was not acknowledged. (C) Among four patients who were diagnosed to have depression, only one had involvement of the psychooncologist and received pharmacotherapy. (D) Among the 10 cases studied in the audit, only 3 were directly managed by pediatric oncologists and the rest were managed by adult oncologists with minimal pediatric input. (E) Almost all were managed in adult wards with other adult patients. (F) The nurses looking after these patients were general nurses without any specialist pediatric training or skills. (G) Minimal involvement of the social work team interacting with the disjointed families and siblings with issues. (H) Spiritual and existential issues were not addressed in any of the patients studied. (I) No involvement of complimentary and alternative medicine such as art therapist, yoga teacher, etc.
Transition of care
Not valuing the time left
In adolescents with cancer, generally 70% of the patients do well with treatment and 30% do not. In those patients who do not respond to treatment or are having progressive disease on treatment, it is important to "know when to stop treatment." More patients are dying in ICU and hospitals due to reactive decisions instead of normal or natural decision making.
Not knowing what to expect
Inaccurate and unrealistic prognostication, physician optimism about outcomes of treatment, unexpected shortening of curative phase, prolonged palliative phase, shifting of focus and goals of care due to multiple clinical inputs, lack of honest and effective communication, lack of clarity about treatment and treatment outcomes, and lingering uncertainties leads to diminished decision-making ability by the families.
Need to do feel safe and secure
Being good parents some times is perceived as doing everything they can than doing what is best for the child. Sometimes, it is a collective family decision with involvement of grandparents, uncles, etc., and parents may not consider decisions such as stopping treatment, accepting palliative care, not for resuscitation, end of life care for the fear of being perceived by rest of the family as uncaring parents. With regard to communication issues, a great deal of collusion exists, as parents would not want their child to know about the diagnosis or clinical outcomes. This usually stems from love and overbearing protection.
Not having a bridged transition of care from pediatric to adult cancer care
In a conventional cancer setting until late adolescence, the patients are followed up under pediatrics and sometimes they are transferred to adult service quite abruptly on the basis of age criteria. This could result in gaps in medical supervision, adult service unprepared or ill informed to accept a young adult from the pediatric service, and lack of trust and stress in the person transferred. ,,
Two UK-trained pediatric oncologists who are currently practicing in a tertiary cancer hospital in India were interviewed with regard to difficulties noted in the process of caring an adolescent with cancer and barriers observed in providing a good oncological care to an adolescent with cancer.
Following were the issues noted:
End of life care
Some parents never give up hope for a miracle and can never stop aggressive therapies. Many patients who die of progressive disease still die after receiving aggressive medical therapy. The decision to stop cancer chemotherapy is difficult, but with progression of disease or relapses, families need to know that the chance for cure lessens. All options, including aggressive therapy, palliative therapies, and supportive care, should be presented to the family.
End of life care in an adolescent population usually involves intensification of ongoing supportive care treatment in the form of higher doses of medications given more frequently. It is important to guide the parents honestly through the dying process of their child. It involves accurate prognostication, anticipating their needs, answering questions, and to have a discussed documented communication in place which is flexible for changing clinical situation of the child. It is important to discuss with the parents the site of death and provide support system accordingly. 
Three patients who were studied in this audit died in the hospital, and two were initiated on end of life care pathway. Intractable respiratory distress was seen in all three patients needing palliative sedation. Palliative sedation in an adolescent population presents with its on conundrums and which is at times ethically and medically challenging. However, these patients required gradual titration of opioids and benzodiazepines to a point of sedation to relieve respiratory distress. The intent was only to relieve the distress of breathing, and the inadvertent effect was sedation. In all the three patients, family were involved in the process of decision making and the DNR was documented. In the bereavement phase, the parents and grandparents were interviewed and they were satisfied and comfortable with the process of end of life care provided.
The death of one's child is a deep and enduring grief. Four phases of grief are thought to be common among parents of children with fatal illnesses: (1) bereavement at the time of initial diagnosis, (2) integration, (3) renewed bereavement as curative options are exhausted and death approaches, and (4) postdeath mourning. Grief symptoms are manifest throughout all of these phases.
Grief and burnout are common among clinician's caring for adolescents with life-limiting illness, which often leads to compassion fatigue, lower frustration tolerance, dread of caregiving, diminished sense of purpose, depression and loss of hope, diminished capacity to listen, communication failure, and loss of confidence.
Inferences drawn from the audit were as follows:
The authors would like to thank Dr. Intezar Mehendi, Pediatric Oncologist, HCG, Bangalore, Dr. C. P. Raghuram, Pediatric Oncologist, HCG, Bangalore, and Dr. Pramod, Orthopedic Oncologist, HCG, Bangalore for their support.
[Table 1], [Table 2], [Table 3], [Table 4]