Home palliative care and end of life issues in glioblastoma multiforme: results and comments from a homogeneous cohort of patients

Abstract

<jats:sec> <jats:title>Object</jats:title> <jats:p>Glioblastoma multiforme (GBM) is a rare tumor whose prognosis has remained poor over the years despite innovative radio- and chemotherapies, and important technical advances in neurosurgery such as intraoperative imaging, fluorescence, Cavitron ultrasonic surgical aspirator, and neuronavigation. Particular attention has been dedicated in the last years to the end of life (EOL) period in cancer patients for both ethical and socioeconomic issues. Good palliative care at home avoids improper and expensive hospitalizations, and helps and trains families, caregivers, and patients in facing a difficult situation.</jats:p></jats:sec> <jats:sec> <jats:title>Methods</jats:title> <jats:p>In 2012–2013 the authors' group cared for 197 patients with brain tumors. Of these there were 122 with GBMs: 64 died and 58 are still receiving assistance. The clinical conditions are periodically evaluated with the following scales: Barthel Index, Karnofsky Performance Scale, and Mini-Mental State Examination. Home care staff includes 2 neurologists, 5 nurses, 2 psychologists, 3 rehabilitation therapists, and 1 social worker. The intensity of care changes at the different stages of disease, ranging from low to medium levels of intensity at the progression stage (more than 1 access weekly) to high levels of intensity at the EOL stage (at least 3 accesses weekly). Control MRI studies are obtained every 3 months before terminal progression.</jats:p></jats:sec> <jats:sec> <jats:title>Results</jats:title> <jats:p>Overall in this sample of patients there were 2838 home visits and 11,714 days of assistance. Thirty-four patients (14 female and 20 male) died at home (53.1%); 22 (13 female and 9 male) at the hospice (34.4%); and 8 (4 female and 4 male) at the hospital (12.5%). A positive impact on caregivers for home assistance was recorded in 97% of cases, for nursing in 95%, communication in 90%, rehabilitation at home in 92%, and social work help in 85%. Also, 72% had an improvement in their quality of life scores due to rehabilitation.</jats:p> <jats:p>End of life palliative sedation with midazolam was necessary in 11% of cases to obtain good control of symptoms such as uncontrolled delirium, agitation, death rattle, or refractory seizures. Intramuscular phenobarbital is the authors' drug of choice for the severe seizures that occurred in 30% of cases. The reduction of steroid dosage is also used to decrease wakefulness. Steroids were withdrawn in 45% of patients dying at home, mild hydration was done in 87%, and tube feeding in 13%. The decision-making process at the EOL stage is time consuming, but the degree of distress of the family is inversely proportional to the extent of the preparatory period.</jats:p></jats:sec> <jats:sec> <jats:title>Conclusions</jats:title> <jats:p>A previous paper showed the positive cost-effectiveness of home assistance for a larger group of patients dealing with any kind of malignant brain tumors. The same is enhanced for patients with GBM. This requires a well-trained neuro-oncology team that manages neurological deterioration, clinical complications, rehabilitation, and psychosocial problems with a multidisciplinary approach.</jats:p></jats:sec>

Glioblastoma, the Neurosurgeon, and Neuro-Palliative Care

“…17 An additional benefit of early discussions regarding care during the end of life for GBM patients is less stress for family members. 28 Additionally, quality of life is increasingly being suggested as an end point in clinical studies. 20 The majority of patients with a terminal cancer diagnosis will experience symptoms that are distressing to them such as pain, nausea, and vomiting.…”

“…Given the recent high quality data from Temel, et al 17 demonstrating that early palliative care, in conjunction with standard oncologic care, for patients with metastatic lung cancer led to significant improvements in quality of life and longer survival it suggest that a similar trial would be worthwhile in GBM patients. Current literature in palliative care of patients with GBM indicates that patients are highly satisfied with a neuro-palliative approach, 22,26,28 that it provides potential cost saving benefits, and that there may be a potential for increased survival, 25 although no study has examined early palliative care in conjunction with standard therapies for GBM patients. The current studies in palliative care for GBM patients are also limited by small samples and retrospective study designs.…”

“…22 On one hand these findings may be attributed to side effects of medications such as steroid induced agitation or anti-epileptics leading to cognitive dysfunction. 20,28 On the other hand, an intrinsic disease of the brain, such as GBM, is likely to impart cognitive dysfunction on patients that manifests as lethargy, seizures, confusion, and delirium regardless of treatment side effects. 23 Occasionally, palliative sedation is employed in the end of life period to combat the distressing cognitive changes associated with GBM.…”

“…23 Occasionally, palliative sedation is employed in the end of life period to combat the distressing cognitive changes associated with GBM. 20,21,28 Unfortunately the use of palliative sedation is complicated due to the fact that treating physicians may not know the patients' expressed wishes and that many patients, during the end of life, are unable to participate in making decisions about their care. 26 …”

“…Using surveys to assess caregiver satisfaction, several studies have demonstrated high rates of caregiver satisfaction during end of life care (54-90% were satisfied). 22,26,28 Although palliative care for GBM patients is associated with satisfaction it is still an immense challenge to effectively manage symptoms in this patient population. Dedicated neuro-oncology teams could be a potential strategy to deal with the myriad of challenging symptoms experienced by brain cancer patients.…”