Providing palliative care for a dying teen at home: perspectives and challenges.

Adolescents and young adults with cancer are a heterogeneous group. Management of this special group requires a broad-based interdisciplinary clinical team, which should include palliative care (PC), psychology, social work, oncology, and nursing representatives. The function of PC is to provide impeccable pain and other symptom control and to coordinate care as the disease progresses. The cure rate of cancer in adolescents is high but between 10% and 40% of them will develop incurable disease depending on tumor type and prognostic factors. PC in adolescents should also take care of the specific physical and psychosocial developmental changes in this age group. A 16-year old boy suffered with incurable disease and team has provided the PC at the door step taken as a case study.

INTRODUCTION

Adolescents form a distinct group of population whose palliative care (PC) needs to be different from those of adults and children. Adolescence is a continuing evolution of childhood to adulthood where they have different physical, emotional, psychological, and social needs. During this period an individual develops his own identity, attains independence from parents, develops own personal value system, modifies behavior, and takes responsibility for one's own actions. Hormonal changes lead to alteration in physical appearance and attainment of sexual awareness.[1] Among the adolescent group, there is a varying level of physical, emotional, and psychological maturity making adolescent PC very distinct and challenging. Physical, sexual, and emotional development will continue to a certain extent even in presence of progressive worsening health and meeting these needs along with providing a good PC is often demanding.[2]

More children with life-limiting illness are surviving into their teens that present with a new spectrum of PC patients whose needs are more specialized and need a multidisciplinary approach. Providing this level of care in the community is complex and requires a team effort. This is one such case that highlights the intricacies in caring for adolescents with a life-limiting illness in the community. A patient was visiting to the Oncology Outpatient department for treatment. As a Community Health Nurse, this patient came across and gathered all the information about the patient including the socioeconomic background and assessed the sociocultural status such as religion, pattern of decision making, preferred communication style, level of acculturation, reason for seeking care, belief about the problem, and previous and anticipated treatment of the family. Since the patient was in a critical stage, the family members needed someone to advise them and therefore they have gladly accepted for the medical/nursing attention. This helped in providing the care at the doorstep and the association with the patient continued till his last breathe.

CASE REPORT

He was 16-year old school going boy who lived at home with his family was diagnosed with locally advanced head and neck cancer with no known distant metastasis [Figure 1]. The extent of the cancer involved entire left side of the face, left ear, and scalp. He had visual loss in his left eye and facial disfigurement. He was cared for at home by his mother and grandmother. His father lived and worked in a different city and he had one teenage sibling who was his younger sister. After the initial diagnosis, he underwent radical facial surgery including maxillectomy and postoperative chemo radiotherapy. He was Ryle's tube fed after the surgery due to dysphagia. One year later, he had recurrence of the cancer at the operative site. He had an ulceroproliferative wound involving the left side of the face, eroding the left ear canal. The wound was infected and was covered with slough and maggots. He was referred to the community PC by his primary treating doctors for symptom control and specialist PC. At this point of time, he had disease progression on the treatment and options of disease modifying treatment were very limited.

Figure 1

Clients condition during initial visit

He was seen regularly in the community by a multidisciplinary PC team. During the initial visit the patient had uncontrolled pain and purulent discharge from the left side of the face. He was studying in class 9 and had discontinued his schooling. He was fairly independent with activities of daily living and use to watch television and occasionally, turn pages of a magazine, and see pictures. His mood was depressed and often had crying spells. His grandmother was very loving and supportive and her presence was very comforting to him. He always perceived that his mother did not love him, as she was more devoted to the care of his younger teenage sister and household work. His father was away most of the time and had little involvement in boy's care. His sister had a blunted affect and had little involvement in his brother's life or his care.

His pain was optimally controlled at home with oral analgesics administered through Ryle's tube. After initial wound debridement, daily dressings were done at home. The team advised patient's father to take time off work and spend time with his son. Along with the patient, all the members of the family received one to one counseling. During the interview, these were the remarks made by the patient. “My mother does not love me and she is not interested in my care.” “I am all alone here and I miss my friends and school.” “I look very bad.” “I do not like what's happening.” These were few remarks made by his parents. “He is our only male child.” “We have struggled to raise him up.” “He was very smart and good looking, look at him now.” We spent all our money on his treatment. His grandmother was caring, optimistic and was always hoping for a miracle cure. His sister had little knowledge about her brother's prognosis, and when confronted with a question about she losing her only brother she was quiet and expressed no emotions. Members of the team had regular debrief sessions among themselves and also externally. Over the period of next 2 weeks, he had involvement of his right eye and had total loss of vision. His general condition gradually worsened and he needed maximal support with activities of daily living. His hearing was still present and he still used to recognize the presence of the health personnel. On further interviewing the patient's mother, her avoidance behavior was due to the fear of losing her only son. She was further counseled, and later on she was more involved in her son's care and was able to spend quality time with her son. He died 2 weeks later at home in the presence of his family with his mother holding his hand.

The PC team made two bereavement visits and following were the few remarks made by the patient's family. “Before death he coughed out all the secretions, we thought he will recover fast.” “We were able to spend a lot of time with our son during his last days.” “We thank you for being honest and letting us know he will die, your sincere guidance helped us to support our son throughout the period of illness, dying, and death. Though it was a difficult experience for the team throughout it was also a very rewarding experience. It was an excellent experience for the team members. During the four weeks time, the team was confident enough to face the similar challenges in providing palliative care to the needy clients.

Some of the issues identified in this situation are as follows.

Caring for adolescent - difficulties faced compared to caring for adults:

level of the stress;

poor self-esteem of the child;

increased anxiety among parents, grandparents, child, and care providers;

impact on the development of siblings;

job/home interaction of parents;

family coping.

The body image:

weight loss;

muscle weakness;

skin changes;

disfigurement of face;

growth on face;

loss of vision;

incontinence and catheter.

Psychosocial issues:

no friends and separation from peers:

anger;

discontinuation of education;

diminished interaction with the family members;

financial burden;

anxiety;

depression.

Family members’ feelings/emotions: (some of the points parents expressed during grief and bereavement period.)

he is the only male child;

brought up to the age of 16 years and he was studying in class 9;

he was very smart, good looking and helpful boy;

spent money for his treatment instead of his study;

crying all the time;

before death he coughed out all the secretions, mother thought he will recover fast;

while dying he held his mother's hands that provided lot of emotional satisfaction to the mother.

Team experiences:

Such clients should get good and effective care that gives quality of life to the terminally ill patients.We satisfied with the care provided to the child as the family members expressed their gratitude about our service.

Learning experiences:

managing complex symptoms issues;

prioritization of care;

building a therapeutic relationship;

communicating prognosis;

open and truthful communication;

breaking the bad news;

giving psychosocial support;

building up team spirit.