American Journal of Hospice and Palliative Medicine®

Since the publication in 1998 of the articles by the UK Prospective Diabetes Study (UKPDS) group, guidelines for the management and treatment of type II diabetes have been standardized. When applied to an end-of-life population, these international recommendations do not have any scientific justification and go against quality-of-life goals promoted by hospice and palliative care. The aim is to demonstrate this in the current article.

We conducted this study to describe the symptom burden among hospitalized patients with cancer in a Kuwaiti cancer center. Twenty physical symptoms were assessed in 45 patients with cancer. The majority (82%) of patients had an advanced incurable cancer and 42% were receiving best supportive care only. The median number of symptoms per patient was 6.4 ± 2.8. The most common symptoms were pain (82%), weakness/fatigue (80%), anorexia (67%), weight loss (49%), and dyspnea (42%). Pain was the most distressing symptom in 31% of patients, followed by dyspnea (24%) and weakness/fatigue (11%). The high prevalence of advanced disease and the demonstrated high symptom burden mandate the initiation and development of culturally sensitive palliative care models, especially hospital-based ones, to relieve the suffering of patients with cancer in Kuwait.

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and their health care providers. We report the results of a survey completed in late 2007 of the Section on Critical Care of the American Academy of Pediatrics (AAP). The 102 respondents provided information regarding their clinical and educational experiences, perceived barriers to the provision of palliative care in the intensive care environment, currently available PPC resources, and the usefulness of palliative care specialization in the pediatric intensive care unit.

Background: This article describes the patients and activities of the Pediatric Palliative Care and Pain Control Clinic of the National Children’s Hospital (PPCPCC NCH) in San Jose, Costa Rica Central America, founded in 1990, is the first such clinic in the country. Methods: This study includes all the children and adolescents referred to the PPCPCC NCH from January 2000 to December 2008. This is a quantitative and descriptive study. We used a simple format that included variables such as age, sex, diagnostic, place of reference, pain, and other symptoms. Results: The database initially registered a total of 1470 patients; 25 of these were excluded from the study because of incomplete information, leaving a total of 1445 registered cases for the analysis. The average number of patients admitted was 156 per year. Malignant tumor was the principal diagnosis at the time of admission, followed by central nervous system abnormalities. Pain was the most frequent symptom. Most patients were visited or examined at home and/or the pediatric palliative care day center and died in their own home. Conclusion: The initial analysis enabled us to obtain information and feedback about the work of the PPCPCC. We are now able to understand more fully the needs of pediatric palliative care in Costa Rica such as increasing the coverage of pediatric patients who require palliative care, improving our resources, further defining the criteria for admission of patients to a palliative care program, and developing standards for measuring and recording symptoms besides pain.

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

This article explores the experiences of older patients with cancer in phase 1 clinical trials. Conducting a case series of face-to-face, in-depth, open-ended interviews and using qualitative methods of analysis, we find that the psychosocial process of social comparison is relevant for understanding older adults’ phase 1 clinical trial participation. Social comparison influences decisions to enroll in a phase 1 clinical trial, shapes perceptions of supportive care needs, and encourages the utilization of hope. Additional research should develop strategies for addressing supportive care needs among this patient cohort whose use of social comparison can inhibit articulation of pain, suffering, and symptom burden as well as use of informal support systems.

The complexity of pain and pain care is such that there may come a point in the treatment of a patient with pain when a simple approach to management is no longer possible. The proverbial analgesic ladder can be rapidly overtaken when attempting palliative management of long-term or severe end-of-life pain. Epidural steroid injection is frequently used procedure in chronic back pain of neuropathic origin in nonmalignant cases. This case report implicates the use of epidural steroid for the management of severe neuropathic symptoms including allodynia and hyperalgesia in the setting of cancer pain and palliative care.

A 22-year-old woman with nodular sclerosis type II Hodgkin lymphoma diagnosed in June 2001. She initially underwent chemotherapy with 6 cycles of ABVD (adriamycin, bleomycin, vincristine, dacarbazine) regimen, leading to clinical remission. As it relapsed, she was again treated with 2 different chemotherapy regimens. In November 2003, she underwent bone marrow autotransplantation, but it relapsed after 2 months. After that, she was treated with chemotherapy in monotherapy until November 2005. In December 2005, she was referred to palliative care. Her main symptom was very severe pruritus that interfered with all aspects of her life, making her scratch continuously and interfering in all aspects of her life. She was treated with loratadine, hydroxyzine, prednisolone, paroxetine, mirtazapine, cimetidine, and ondansetron, individually and in various combinations. She also underwent ultraviolet phototherapy. All trials failed and her pruritus remained at level 8 of 10 most of the time. In April 2006, she started on thalidomide, 200 mg at night. The pruritus significantly improved to a level of 3 of 10 but did not disappear completely. She was at last able to sleep properly at night. She remained with a low level of pruritus until her death in July 2008, at the same dose of thalidomide.

Most patients with advanced malignancy will die of their disease. Care of the dying is therefore a fundamental skill for the oncologist. Although protocols exist in other countries, there is no established protocol in the United States. We present a protocol for management of the dying that is clinically useful and review the existing evidence-base.