Journal of Palliative Care

The Palliative Performance Scale (PPS), a modification of the Karnofsky Performance Scale, is presented as a new tool for measurement of physical status in palliative care. Its initial uses in Victoria include communication, analysis of home nursing care workload, profiling admissions and discharges to the hospice unit, and, possibly, prognostication. We assessed 119 patients at home, of whom 87 (73%) had a PPS rating between 40% and 70%. Of 213 patients admitted to the hospice unit, 175 (83%) were PPS 20%-50% on admission. The average period until death for 129 patients who died on the unit was 1.88 days at 10% PPS upon admission, 2.62 days at 20%, 6.70 days at 30%, 10.30 days at 40%, 13.87 days at 50%. Only two patients at 60% or higher died in the unit. The PPS may become a basis for comparing drug costs at home and for studying the effects of treatments (e.g. hypodermoclysis) at various levels of physical performance. Validity and reliability testing are currently being undertaken.

Care for the family and bereavement follow-up is considered part of good palliative practice. Risk assessment schedules and recommended methods of follow-up are available but the extent to which these are used in practice is not known. This study examines the bereavement follow-up to families and carers by five palliative support teams in England, UK. We report the bereavement follow-up provided and compare the responses of different teams. Data were collected on all patients using standardized records. This included patient and family details and the initial bereavement follow-up after the death. A total of 320 patients were cared for until death: 55% men, 45% women, mean age 64 years. All patients had cancer except one who had AIDS. Civil status was 64% married, 20% widowed, 5% divorced or separated, 9% single, and 2% other. 49% lived with one other person, 19% alone, and the remainder with two or more people. Spouses were the most significant carers at 62%. Bereavement follow-up was offered to 215 or 67% of families, but this varied greatly between the teams (10%-94%). Initial follow-up was made mainly by the nurses (78%). 50% of follow-ups were by visits, 45% by telephone contact, 3% by letter, and 1% other. Reasons for no follow-up included (a) no relatives 12%, (b) staff did not know the family well enough 29%, (c) carers lived outside the visiting area of the team 25%, (d) carers were judged as having no need 23%, (e) carers refused 1%, (e) other 4%, and (f) not recorded 5%. The results indicate the diversity of bereavement follow-up and suggest a need for training, clear protocols, and further research into the needs of families.

The McMaster Quality of Life Scale (MQLS) was developed to measure the quality of life in a palliative patient population. This paper describes the tool and its psychometric properties. Palliative stage patients could assess their condition using this tool (r=0.84; 95% CI 0.76–0.94). Although ratings by different raters (patient, family, staff) were correlated, systematic differences were found by source of rating, which suggests that proxy rating (substituting family or staff ratings for a patient rating) should be avoided. The MQLS was sensitive to changes in the patient's quality of life. Neither age nor sex of patient influenced total score obtained. Persons close to death rated their quality of life as being poorer than those who were alive at the end of the data collection period. People who needed to have the MQLS read to them rated their quality of life somewhat lower than patients who could complete the task by themselves. Staff-rated MQLS scores correlated significantly with the staff-rated Spitzer Quality of Life Index. This study suggests the MQLS is a reliable and valid measure of quality of life during the palliative phase.

In the course of the inevitable hospitalizations of AIDS patients, many difficult questions concerning curative and palliative approaches to care have to be answered. In order to guide these strategies, we conducted a prospective study to identify those variables which can be easily quantified on admission which might be predictive of patient outcomes. Between 1 June 1990 and 25 April 1991, 140 consecutive hospitalizations of 83 AIDS patients were recorded. Demographic, clinical, and biological data were collected within 48 hours of admission. Probable (p<0.10) or definite (p<0.05) factors contributing to a higher mortality included type of opportunistic infections, serum albumin level, total lymphocyte count, weight, CD4 cell count, and neurological manifestations. In the multivariate proportional hazards model, two factors were significantly and independently predictive of lower survival: body weight less than 90% of ideal body weight and neurologic manifestations. The probability of survival was significantly affected by the number of predictive factors present on admission, and patients were significantly more likely to die when these latter two factors were present concomitantly. These factors might be useful to define the optimal mode of care for hospitalized AIDS patients, considering both patients’ wishes and an objective assessment of the prognosis.

This study explores the practices of 25 Taiwanese families following the death of a child from cancer. Detailed description of the families’ Post-death practices was obtained through semi-structured interviews with at least one family member. Through content analysis of the data, 10 categories were identified. These were: caring for the body, funeral arrangements, mourning clothes, ashes, spirit tablets, child's belongings, child's room, visits to the grave or the temple, dreams, and talking about the dead child. The findings show that although the rituals performed following the death of a child are simpler than those traditionally performed for an adult, they are still an important part of the families’ lives during the post-death period.

Treatment of patients with advanced-stage hematological malignancies (HM) includes frequent transfusions. Given present limited hospital budgets, administrative pressure is increasing on hematology services to limit the cost of these transfusions. An expert multidisciplinary panel involved in hematology formed a working party to draw up a series of proposals, including definitions of advanced stage disease and the indications for platelet transfusion. Their proposals included: (a) Platelet transfusions are indicated for the treatment of bleeding caused by low platelet counts; (b) Patients should receive full information, including the basic criteria for platelet transfusion; (c) Doctors should be trained to assess whether or not platelet transfusions are urgently required; and (d) The practice of home transfusions should be encouraged.

Symptom relief is the major goal of palliative care. Its assessment is essential and several methods have been described. To evaluate immediately the clinical situation, a circular diagram for a visual representation of the physical symptoms is proposed. Particular patterns derived from the given data emerge from the diagrams. Certain critical situations often observed in palliative care, especially in the last weeks of life, show specific patterns that are easily distinguished. Effective treatments may change the appearance of different pictures.