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A palliative home care program for children was reviewed
To obtain a better understanding of the complications found in the home, and to ascertain the extent of the nursing support needed.
The study was descriptive and retrospective. Data were abstracted from both medical and home care charts.
The palliative home care program for children is based in a tertiary care paediatric hospital.
Twenty-eight children under the age of 18 years, with cancer, neurodegenerative disease and acquired immunodeficiency syndrome, needing specialized terminal nursing care at home, were included. Patients needing minimal nursing support were excluded from the review.
Twenty-two patients died at home and two died in the hospital in accordance with the parents’ wishes. Most patients had pain severe enough to need opioids (25 of 28). The more frequent complications were inconsistent pain control (43%), vomiting (39%), respiratory problems (39%), bed sores (25%) and convulsions (25%). Home care had to be discontinued for only four patients. Parents found intractable pain, convulsions and end-stage dyspnea were the more worrisome complications. The patients received an average of 14 home visits and 14 telephone calls. Telephone calls and home visits were frequent over the weekends and evenings (0 to 45, median=3).
This report confirms the feasibility of terminal care at home for children with complex problems. Complications can be well tolerated by the parents if the medical team is readily available.
Revue d’un programme de soins palliatifs pédiatriques à domicile. Évaluation des complications rencontrées à la maison et du besoin de support de la famille.
Étude rétrospective et descriptive. Revue du dossier médical et du dossier de soins à domicile.
Hôpital pédiatrique tertiaire.
28 patients de moins de 18 ans nécessitant des soins palliatifs spécialisés à la maison. Les patients ne nécessitant pas de soins complexes sont exclus de l’étude.
22 patients sont décédés à domicile et 2 à l’hôpital, tel que souhaité par les parents. La majorité des patients ont été assez souffrants pour nécessiter des opiacés (25 sur 28). Les complications les plus fréquentes ont été: douleurs difficiles à contrôler (43%), vomissements (39%), plaies (25%), et convulsions (25%). Les complications les plus inquiétantes pour les parents étaient: les douleurs in-traitables, les convulsions, et la dyspnée terminale. Chez 4 patients seulement, le maintien à domicile a été impossible. Plusieurs visites et téléphones survenaient les soirs et les fins semaines (0 à 45, médiane = 3).
Même les patients présentant des problèmes complexes peuvent être maintenus à domicile. Les complications sont en général bien tolérées par la famille si l’équipe est très disponible.
Home care for terminally ill children has been evolving, notably over the past two decades (1–5). Parents play a major role in the at home care of a dying child. In the model home care programs described by Martinson et al (1) and Lauer and Camitta (6), the family was the primary care giver. In both programs, the nurse acted as a facilitator of care and the physician as a consultant (7).
Because of trends in health care, it is expected that an increasing number of children will receive home care (8). Very sick children will tend to be to be discharged early from the hospital despite their complex problems. Successful domiciliary terminal care for children will depend on adequate pain and symptom control (3,9). A better understanding of the complications found in the home setting will help to anticipate problems and target support to the family. This article outlines the author’s experience with terminal care patients needing specialized nursing care at home. The program is briefly outlined. Types of patients, complications, and follow-up of the family are discussed.
The palliative home care program for children was based at a tertiary care paediatric hospital in a large city (population one million people) (10). Parents were the primary care givers; a primary nurse was the principal consultant to the parents and visited the family on a regular basis. A back-up visiting nurse was on call at all times. Primary nurses were responsible for being available on a 24 h basis, assessing the child’s and the family’s needs regularly, teaching the physical care and medical treatment needed by the child, providing emotional support to the family and procuring medical equipment.
A paediatrician acted as consultant to the nurses. The paediatrician’s role was to plan medical care, to manage pain and other symptoms, and to examine the child in the home or the hospital setting at the nurse’s request. The paediatrician was a member of the pain clinic of the paediatric hospital.
The parents were also supported as needed by a multi-disciplinary team including: one occupational therapist, two physiotherapists, one social worker and one dietician. Families living in the city and its immediate suburbs were followed exclusively by the tertiary care hospital’s home team. Families living in more remote areas were looked after primarily by their local health units while telephone support and occasional visits by the tertiary care team were also available.
Parents were aware of the prognosis of their child before admission to the program. No resuscitation measures were offered in the home setting. Pain was measured with a pain scale appropriate for the child’s age in all patients (11). A 10 cm visual analogue scale was used for school-aged children. The Gustave-Roussy et al (12) behavioural scale or McGrath et al’s (13) facial affective scale were used in preschoolers. Parents kept a journal of their child’s symptoms. Treatment plans were reviewed regularly with the parents. Complications were anticipated, and medications adjusted accordingly in cooperation with the parents. To maintain good quality care, problems were discussed on a weekly basis by the multi-disciplinary team and treatments were reviewed with the pain clinic. Patients’ charts were reviewed at the end of the home care follow-up to identify problems encountered in the home setting or parents’ complaints.
The study was descriptive and retrospective. All patients, between April 1990 and October 1994, who needed special nursing care (oxygen, suctioning, bed sores, severe pain, vomiting, etc) were included in the review. Patients who required minimal nursing support were excluded from the study. Data were abstracted from both hospital and home care charts. Home care charts included information on the time and length of visits and telephone calls, the type of family support, finances and family crises, complications and types of treatment. In this review, neither chart was accurate regarding the doses of medication.
There were 28 patients included in the study, 13 girls and 15 boys. The mean age of the patients on admission to the palliative care program was 6.2 years (range six months to 17 years). Patients were followed from three to 512 days at home (median = 52 days). Twenty-two (79%) patients died at home and six died in the hospital (two by choice, three had to discontinue home care and one died unexpectedly while in hospital respite care). Three patients had to discontinue home care: one patient because of intractable pain, one patient because of severe dyspnea, and one because of a combination of both severe dyspnea and severe pain. The majority of patients needing specialized home care were cancer patients (10 brain tumours, 12 other types of cancer). One patient was human immunodeficiency virus positive, and five had degenerative diseases. Most patients (89%) had pain severe enough to necessitate opioids (Table 1). All patients on opioids also received laxatives. Adjuvants were added to the opioids in 13 patients (46%). Acetaminophen was the most commonly used adjuvant (36%). Nonsteroidal anti-inflammatory drugs, carbamezapine and antidepressants were used more frequently during the last year of the review. Relaxation, massage or self-hypnosis was offered to every child. Psychosocial support was available as needed.
The more frequent complications (Table 2) were inconsistent control of pain (43%), vomiting (39%) and respiratory problems (39%). Parents found inconsistent control of pain, convulsions (25%) and end-stage dyspnea (32%) the more worrisome complications.
Inconsistent pain control occurred with 12 patients (43%). Five of seven patients with bone metastasis had intractable pain. In three patients, the severe pain was due to increased intracranial pressure. The other diseases associated with intractable pain included acquired immunodeficiency syndrome, end-stage scleroderma, necrotic rhabdomyosarcoma and omphalocele with heart failure and renal failure. Eleven patients (39%) had severe respiratory distress. Respiratory distress was mainly associated with aspiration pneumonia (three), lung metastasis (four) and brain stem tumours (three). One patient had severe respiratory distress secondary to heart failure. Patients with brain tumours were more likely to have emesis and convulsions than patients with other types of tumours (Table 3). Seven patients did not die peacefully. Three patients had severe respiratory distress, two had intractable pain and two had convulsions. With appropriate support from the team, these complications were all managed at home.
Seventeen patients were exclusively followed by the tertiary care team (Table 4). These patients received an average of 14 home visits and 14 telephone calls. Telephone calls and home visits were made frequently over the weekends and evenings. Families received an average of two telephone calls and two home visits postmortem.
Sixty-four per cent of the mothers were the only primary care givers. Remaining mothers received some help from the father (29%), the grandmother (18%) or an aunt (7%). Twelve mothers quit a job and four worked part-time in order to look after their child. Eight fathers (29%) took a leave of absence from work. Information regarding caregivers before the illness was not available.
This report confirms data from other studies (1–5) regarding the feasibility of terminal care at home for children. Similar to the Martinson et al’s (1) and Lauer and Camitta’s (6) models, parents were the principal care givers throughout the study period. The team acted as a consultant to the family. The paediatrician managed the pain and other symptoms with the input of the pain clinic. The nurse’s role was central to the program (1): teaching, providing emotional counselling, procuring medical equipment and being available as often as requested by the family. We believe that families dealt better with the complications because of the availability of the team. Only three families could not cope at home. Lack of parental confidence in their ability to handle the care of a child with severe respiratory distress at home was the prime factor contributing to the admission of two patients to the hospital. A third family expected their child to die within 24 h of home care beginning. In this situation, the unrealistic expectations of the parents contributed to the hospital admission of the child.
Pain was a more frequent symptom in this study than in previous reports (4,5), partly because the presence of severe pain was one of the inclusion criteria. Because pain was actively measured in all patients, the likelihood of finding the symptom was possibly increased. Opioids were the most frequently used treatment for pain in our patients. This is not surprising because a large proportion of the patients in this review had intractable pain. The addition of adjuvants (acetaminophen, nonsteroidal anti-inflammatory drugs, anticonvulsant) for the control of pain was more common during the last year of the study. Nonsteroidal anti-inflammatory drugs, added to opioids, helped to reduce pain secondary to bone metastasis. The impact of adding adjuvants to opioids in order to improve the control of pain was not formally tested in our patients.
Bleeding was not a complicating factor, but no patients with leukemia were referred to the palliative care program. Fear of bleeding problems is the major reason why patients with leukemia are not referred to home palliative care in the authors’ tertiary setting. Patients with leukemia in our referral area received their terminal care in the hospital. Bleeding as a result of thrombocytopenia was not a frequent problem in Chambers et al’s report (4) despite the inclusion of seven patients with leukemia and one patient with bone marrow failure. The fear of bleeding problems may decrease as reports of experience with terminal care of leukemia patients in the home become available.
Convulsions were easily managed except in one child. This child had severe vomiting, and the convulsions were secondary to an electrolytic imbalance. More aggressive use of antiemetic agents in this situation would have prevented the occurrence of convulsions, which did not respond to anticonvulsant treatments.
End-stage dyspnea was particularly worrisome for the parents. Better control of this distressing symptom has been achieved recently with the addition of midazolam or diazepam to other treatments in our hospital. Parents are now prepared earlier to handle the possible occurrence of this problem in their child. Anticipation of the problem relieves part of the tension.
Mothers were found to be the corner stone of the care at home. Physical and emotional exhaustion is a risk to the principal care givers. The need for supplemental domestic help, the neeed for more specialized emotional counselling and the occurrence of problems with the siblings were discussed early with the family, and appropriate referrals were made. Only one mother had pathological bereavement secondary to the death of the child at home. This child died at home unexpectedly, despite the parents’ desire for a death in the hospital.
The multidisciplinary approach and the great availability of the team contributed to the feasibility of the program; however, the confidence of the parents and the nurses to handle the care of the patient at home was the prime factor contributing to the feasibility of home care.
This report confirms the feasibility of terminal care at home for children with complex problems. Parents can adapt to complications if the medical team is readily available. Other major aspects of the program that need to be assessed, included family and team satisfaction, impact on family life and costs associated with team availability.