The aim of this study was to prospectively describe patients referred to SPPHC teams in Germany. Furthermore, this study aimed to identify differences between non-cancer and cancer patients.
4.1. The “Typical” Pediatric Palliative Patient
Characteristics of the pediatric palliative patients in this study are heterogeneous and correspond to those identified in former studies [5
]. A one-center study from Germany describes similar characteristics regarding the frequency of non-cancer conditions, age range, symptoms, and medications [5
]. In a study by Feudtner and colleagues, which was conducted using a cohort drawn from Canada and the United States of America, similar results were reported [7
]. Similarities can especially be found regarding the fitting of feeding tubes, central venous catheters, invasive and non-invasive ventilators, and tracheostomy tubes [7
]. The most frequent care goals in the current study have been counseling (93.2%) and symptom management (89.2%). Relating burdensome symptoms and the treatment children received at referral indicates that symptom management in primary and secondary care might have not been sufficient (e.g., 25% of the patients with pain were not treated with analgesics). This is comparable with the results of Feudtner et al. [7
], who identified symptom management, communication, and decision-making support as main care goals.
4.2. Cancer versus Non-Cancer Patients in Pediatric Palliative Care
Significant differences were identified between cancer and non-cancer patients. Non-cancer patients showed significantly higher rates of swallowing difficulties, spasticity and seizures. While cancer patients displayed a significantly higher rate of being treated with antiemetics and being fitted with a central venous catheter, non-cancer patients were especially fitted with a feeding tube and were treated with non-medication therapies and oxygen. It was only non-cancer patients who were attached to a ventilator or a tracheostomy tube.
The care goals developed by the SPPHC teams did not differ between the groups. Significant differences did exist, however, within the subgroups of the care categories counsel and empowerment. In the cancer group, the patients themselves required significantly more counseling and empowerment, while in the non-cancer group, the nursing services needed significantly more counseling. This discrepancy is likely due to the high rate of cognitive impairment within the non-cancer group.
In general, the existing care situation for non-cancer patients seems to be more complex upon admission by an SPPHC team and in 14% of the families more than one child is affected by a life-limiting condition. The patients more often received life-prolonging measures, such as being attached to a ventilator or a feeding tube. Other studies have also shown that non-cancer pediatric patients remain in palliative care longer than cancer patients [8
]. Patients with earlier mortality within palliative care more often belong to the cancer group [7
]. Children with complex, life-limiting conditions who are referred to a palliative care service, as well as their families, commonly verbalize goals related to health maintenance and independence [9
]. These results indicate that care goals in pediatric palliative care are focused not only on end-of-life care but also on life-prolonging measures, such as feeding patients with a feeding tube. However, since the current study did not investigate characteristics at several time points, but rather collected the data only at the time of admission into palliative care, no conclusion can be drawn regarding the course and length of palliative care measures or related mortality.
Both patient groups displayed high demands for the management of symptoms; however, the type and number of symptoms differed. While communication impairments required treatment in 45% of patients in the cancer group, this was the case for only 19% of patients in the non-cancer group. Swallowing difficulties required treatment in all cases in the cancer group, while this symptom required treatment in only 64% of patients in the non-cancer group. Thus, depending on the diagnosis and the current treatment situation, the urgency for treating symptoms may differ.
With regard to care goals and the expected remaining survival time, different measures should be considered. A child suffering from a neuromuscular or neurodegenerative disease who also has swallowing difficulties does not necessarily require any interventions if he or she has already been fitted with a gastro- or jejunostomy tube. A similar child already fitted with a nasogastric tube may need to be fed with a gastro- or jejunostomy tube. A child suffering from an oncologic illness, in which survival time is estimated to be short, the care could include measures such as oral care, temporary provision of nutrients via a nasogastric tube, or parenteral supply of liquids.
4.3. The Pediatric Patient Compared with Adult Patients in Palliative Care
Recent studies have shown that pediatric patients differ significantly from adult patients in terms of the spectrum of diagnoses, the number of various symptoms, and the therapeutic measures taken [5
While adult non-cancer patients account for only 8–23% of the cases [4
], the proportion of non-oncologic cases of children varies from 70 to 80% [5
]. The most common diagnoses of the non-oncologic group in adults include illnesses affecting the nervous system, heart (e.g., heart failure) and lungs (e.g., chronic obstructive pulmonary disease) [5
]. Symptoms that appear in most adult cases include tiredness, fatigue, pain and the loss of appetite [5
]. This range of symptoms appears to be comparable with that of the oncologic pediatric group in this study and previous studies with pediatric oncology patients [12
]. The most common symptoms found in the current study, namely, communication impairment, swallowing difficulties, cognitive impairment, seizures, and sleeping difficulties, are of neurological origin.
The study has several limitations. First, given the relatively small sample size at each of the nine sites, the data were not analyzed by site, although each site may have had differences in patient populations and consultative practices. However, the sample size is rather typical for studies conducted in pediatric palliative care. Second, symptoms were assessed only by a non-validated proxy-rating provided by care takers. It was not assessed with a validated measure provided by self-reports or parent proxy-reports. Third, this was a cross-sectional study and information on the patients’ course of disease, treatment process, and outcome were not assessed.