Addressing quality of life at the Edmonton Palliative Care Program. Interview by Anna L. Romer.
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Biomedical subjects
Publications and source records attributed to R L Fainsinger.
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This report compares 20th-century Canadian hospital and nonhospital location-of-death trends and corresponding population mortality trends. One of the chief findings is a hospitalization-of-death trend, with deaths in hospital peaking in 1994 at 80.5% of all deaths. The rise in hospitalization was more pronounced in the years prior to the development of a national health care program (1966). Another key finding is a gradual reduction since 1994 in hospital deaths, with this reduction occurring across all sociodemographic variables. This suggests nonhospital care options are needed to support what may be an ongoing shift away from hospitalized death and dying.
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Although it has been proposed that preoperative analgesia with epidural administration of analgesics may prevent long-term phantom pain, published results to date have been contradictory and controversial. In this case report, we describe a 41-year-old man with local recurrence of squamous cell carcinoma of the anus who underwent a hemipelvectomy. Preoperatively he had a significant neuropathic pain syndrome requiring oxycodone 60 mg every 4 hours. An epidural infusion of morphine and bupivacaine was started 24 hours preoperatively and discontinued on the third postoperative day. Over the next 10 days the oxycodone was gradually decreased and eventually discontinued prior to discharge. A review of the literature reveals conflicting reports on the benefit of preoperative epidural pain management in the prevention of postoperative pain syndromes. Conflicting research and conclusions of commentators leaves unanswered questions for clinicians. Nevertheless, we do know that we need to provide the best pain relief for patients both before and after amputation. This may require a combination of the oral, subcutaneous or intravenous, and epidural routes.
The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and less anecdote was a motivating factor in this multicentre study. Four palliative care programmes in Israel, South Africa, and Spain agreed to participate. The target population was palliative care patients in an inpatient setting. Information was collected on demographics, major symptom distress, and intent and need to use sedatives in the last week of life. Further data on level of consciousness, adequacy of symptom control, and opioids and psychotropic agents used during the final week of life was recorded. As the final week of life can be difficult to predict, treating physicians were asked to complete the data at the time of death. The data available for analysis included 100 patients each from Israel and Madrid, 94 patients from Durban, and 93 patients from Cape Town. More than 90% of patients required medical management for pain, dyspnoea, delirium and/or nausea in the final week of life. The intent to sedate varied from 15% to 36%, with delirium being the most common problem requiring sedation. There were variations in the need to sedate patients for dyspnoea, and existential and family distress. Midazolam was the most common medication prescribed to achieve sedation. The diversity in symptom distress, intent to sedate and use of sedatives, provides further knowledge in characterizing and describing the use of deliberate pharmacological sedation for problematic symptoms at the end of life. The international nature of the patient population studied enhances our understanding of potential differences in definition of symptom issues, variation of clinical practice, and cultural and psychosocial influences.
This prospective survey was initiated to identify factors that helped and hindered home discharge for 100 consecutive patients who did not require further specialist palliative or acute care. Information was collected on demographics, functional ability (using the Palliative Performance Scale [PPS] and Karnofsky Performance Scale [KPS]), cognitive function at discharge as measured by the Mini-Mental State Examination (MMSE), home support circumstances, and patient and family preference for discharge. 59 patients were discharged home and 41 were transferred to a hospice. Younger patients with younger caregivers were discharged home more often. Patients with better MMSE and better functional ability (PPS and KPS) were also more likely to go home. Patients going home were more likely to be married. Preference for site of discharge was met for 76% of patients and 90% of families. Of the patients going to a hospice, 24% of patients and 7% of families preferred a home discharge. More physical support at home could have facilitated a home discharge for 13 patients. Functionally dependent and cognitively impaired patients were generally unable to return home. To support patients and their families in an environment of their choice, access to increased physical support in the home must be addressed.
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The use of sedation and the management of delirium and other difficult symptoms in terminally ill patients in Edmonton has been reported previously. The focus of this study was to assess the prevalence in the Edmonton region of difficult symptoms requiring sedation at the end of life. Data were collected for 50 consecutive patients at each of (a) the tertiary palliative care unit, (b) the consulting palliative care program at the Royal Alexandra Hospital (acute care), and (c) three hospice inpatient units in the city. Patients on the tertiary palliative care unit were significantly younger. Assessments confirmed the more problematic physical and psychosocial issues of patients in the tertiary palliative care unit. These patients had more difficult pain syndromes and required significantly higher doses of daily opioids. Approximately 80% of patients in all three settings developed delirium prior to death. Pharmacological management of this problem was needed by 40% in the acute care setting, and by 80% in the tertiary palliative care unit. The patients sedated varied from 4% in the hospice setting to 10% in the tertiary palliative care unit. Of the 150 patients, nine were sedated for delirium, one for dyspnea. The prevalence of delirium and other symptoms requiring sedation in our area is relatively low compared to others reported in the literature. Demographic variability between the three Edmonton settings highlights the need for caution in comparing results of different palliative care groups. It is possible that some variability in the use of sedation internationally is due to cultural differences. The infrequent deliberate use of sedation in Edmonton suggests that improved management has resulted in fewer distressing symptoms at the end of life. This is of benefit to patients and to family members who are with them during this time.
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The need to sedate terminally ill patients for uncontrolled symptoms has been previously documented in a few reports. A retrospective consecutive chart review was undertaken at a hospice in Cape Town, South Africa, to develop an understanding of the local experience and assess the potential for improved patient management. Twenty-three of seventy-six (30%) patients received sedating therapies: twenty patients for delirium, two patients for delirium and dyspnea, and one patient for dyspnea alone. Fourteen patients were sedated with a continuous subcutaneous infusion of midazolam, seven patients with intermittent doses of benzodiazepines, and two patients with chlorpromazine and lorazepam. The mean midazolam dose was 29 mg per day (median 30 mg; range 15-60 mg per day). Patients were sedated on average 2.5 days before death (median 1 day; range 4 hours-12 days). The mean equivalent daily dose of parenteral morphine in the last week of life showed a significantly higher mean for the sedated group, as compared to the nonsedated group. There was minimal investigation of reversible causes for delirium, none of the patients underwent an opioid rotation, and the opioid dose was seldom decreased. None of the patients received parenteral hydration. The prevalence for the use of sedating treatment is consistent with the range of other literature reports. Nevertheless, the wide disparity in the reported prevalence of these problems, and the ethical concerns raised by the relative frequency of this sedative approach, cannot be ignored.
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The need to treat dehydration in terminally ill patients has become a very controversial topic. Numerous reports in the literature illustrate opposing view-points from both clinical and ethical perspectives. Arguments for the maintenance of hydration in terminally ill patients have tended to come from "the traditional medical model". Many health care professionals looking after terminally ill patients have reacted to the generalized use of intravenous fluids in dying patients and the perceived negative effects of this management. Our palliative care group has argued that the viewpoint that dehydration in dying patients is not a cause of symptom distress overlooks commonly reported problems, such as agitated delirium, that can be prevented or reversed by the management of dehydration. This review presents a summary of the traditional arguments, a different perspective on the controversy, biochemical parameters reported in terminally ill cancer patients, recent dehydration research, and the use of hypodermoclysis and rectal hydration. We conclude that the data reported to date are insufficient to allow a final conclusion on the benefit or harm of dehydration in terminally ill patients. Nevertheless, it is worth considering that while some dying patients may not suffer any ill effects from dehydration, there may be others who do manifest symptoms, such as confusion or opioid toxicity, that might be alleviated or prevented by parenteral hydration.
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