Dendaas N, Pellino TA, Ford Roberts, K, Cleary J. J of Pain & Symptom Manage 2001; 21(2):121-128.

Prepared by: : Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

The purpose of this exploratory study was to examine the end-of-life (EOL) care rendered to patients and families within a large midwestern academic medical center during a recent one-year period. An investigator-developed audit tool was used to review the final hospitalization records of 100 patients. Data were collected regarding demographic variables, final hospitalization, medical diagnoses and histories, and documented end-of-life care. Major findings included a majority of deaths occurring within medical services on critical care units, a frequent short length of stay, a majority of Do Not Resuscitate or Withdrawal of Support orders being written one to three days prior to death, an unstable health status prior to admission, and presence of at least one significant chronic illness in the past medical history. Findings are being used to address EOL care related issues within the institution.

Comments:

Strengths/uniqueness: : This report presents one component of a three-step approach to survey clinical knowledge, documentation of practice, and develop future initiatives on end-of-life care in the acute centre.

Weakness:The lack of description for many of the daily collection items limits the ability of other programs to reproduce or compare some of the research results.

Relevance to Palliative Care: Overall an useful outline and a challenge to all major health care institutions to examine their end-of-life practice patterns. This information can then be used to understand strengths and weaknesses in developing new initiatives.

Prescribing of drugs for use outside their license in palliative care: survey of specialists in the United Kingdom

Pavis H, Wilcock A. BMJ 2001; 323:484-5

Prepared by: : Mohammad Z. Al-Shahri, MD

Received during: Journal Club, Tertiary Palliative Care Unit

Abstract:

(Summarized by Al-Shahri): This paper aimed at studying current practice of palliative care physicians in the UK regarding prescribing of medications outside the licensed indications or routes of administration. One hundred and eighty postal questionnaires were administered and 117 completed. All responses declared that a written consent from patients was not obtained and less than 5% of responses indicated that a verbal consent was obtained before prescribing a drug outside its licensed indication/route. More than 95% of responses indicated lack of documentation and information-sharing with health professionals when using medications outside the licensed indications/routes.

Comments:

Strengths:
1. Novelty and validity of the research question.
2. Good sample size and reasonable response rate.

Weaknesses:
1. The title does not perfectly reflect the content.
2. No reference to validity and reliability of questionnaire.

Relevance to palliative care:
It is not uncommon to use a number of medications in palliative care outside their licensed indication/route. Patients' rights in these situations need to be addressed while trying to avoid creating unnecessary anxiety among patients and their families.

Successful cardiopulmonary resuscitation in a hospice. Downloadable PDF File

Noble S, Newydd YB, Hargreaves P, et al. Palliative Medicine 2001; 15(5):440-441

Prepared by: : Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Cardiopulmonary resuscitation in the hospice setting has been increasingly discussed. A 47 year-old female patient with metastatic melanoma was admitted to a hospice for management of severe incidental pain resulting from a cord compression. Standard pharmacological management was unsuccessful and the patient was considered appropriate for an intrathecal infusion of opioid. On administration of a test dose of bupivicaine, the patient became apnoeic with an unrecordable blood pressure. Full cardiopulmonary resuscitation was instituted and an ambulance transferred the patient to an ICU. The patient stabilized and was returned to the hospice within 24 hours. She continued to receive the intrathecal infusion with excellent analgesia for a further two weeks until her demise. Although it is not the intention of palliative care to unnecessarily prolong life, it is certainly not our role to shorten it. This event had a profound effect on the hospice staff and raised important issues for discussion.

Comments:

Strengths/uniqueness:
This is a good case report highlighting an important area that has long been closed to discussion in hospice/palliative care groups.

Weaknesses:
This correspondence is a small step in raising this issue. More in-depth work needs to be done to explore this further.

Relevance to palliative care:
Many palliative care programs are either considering or already more involved in interventions such as intraspinal analgesia and other procedures that may cause life-threatening complications. However introducing CPR into the tranquil environment of a palliative care unit will come with a cost that requires more study and discussion.

Phase III evaluation of fluoxetine for treatment of hot flashes. Downloadable PDF File

Loprinzi CL, Sloan JA, Perez EA, Quella SK, Stella PJ, Mailliard JA, Halyard MY, Pruthi S, Novotny PJ, Rummans TA. Journal of Clinical Oncology Vol 20 (6) 1578-1583

Prepared by: Dr. Sharon Watanabe

Received during: Journal Club, Tertiary Palliative Care Unit, Grey Nuns Community Hospital

Abstract:

Purpose: Hot flashes can be a prominent problem in women with a history of breast cancer. Given concerns regarding the use of hormonal therapies in such patients, other nonhormonal means for treating hot flashes are required. Based on anecdotal information regarding the efficacy of fluoxetine and other newer antidepressants for treating hot flashes, the present trial was developed.
Patients and Methods: This trial used a double-blinded, randomized, two-period (4 weeks per period), cross-over methodology to study the efficacy of fluoxetine (20 mg/d) for treating hot flashes in women with a history of breast cancer or a concern regarding the use of estrogen (because of breast cancer risk). Eligible patients had to have reported that they averaged at least 14 hot flashes per week; they could have received tamoxifen or raloxifene as long as they were on a stable dose. The major outcome measure was a bivariate construct representing hot flash frequency and hot flash score, analyzed by a classic sums and differences cross-over analysis.
Results: Eighty-one randomized women began protocol therapy. By the end of the first treatment period, hot flash scores (frequency x average severity) decreased 50% in the fluoxetine arm versus 36% in the placebo arm. Cross-over analysis demonstrated a significant greater marked hot flash score improvement with fluoxetine than placebo (P= .02). The results were not adjusted for potential confounding influences, including age and tamoxifen use. The fluoxetine was well tolerated.
Conclusion: This dose of fluoxetine resulted in a modest improvement in hot flashes.

Comments:

Strengths/uniqueness:
This paper comes from a group that has an established track record in conducting clinical trials of treatments for hot flashes. The study appears to be methodologically sound.

Weaknesses:
The magnitude of fluoxetine's effect in relieving hot flashes is relatively small, especially considering the significant improvement of this symptom with placebo. As the study was conducted in patients who were cancer-free, the tolerability data are not generalizable to advanced cancer patients.

Relevance to Palliative Care:
Hot flashes do not appear to be a prominent symptom in the terminal phase of cancer, although they may be more bothersome earlier in the course of disease. For patients who are troubled by this symptom, there is a growing body of evidence supporting the role of antidepressants as a therapeutic option, particularly when hormones are contraindicated. However, the modest symptomatic benefit must be weighed against potential side effects, which tend to be more pronounced in patients with advanced illness.

Comparison of Low-Molecular-Weight Heparin and Warfarin for the Secondary Prevention of Venous Thromboembolism in Patients With Cancer: A Randomized Controlled Study.Downloadable PDF File

Guy Meyer, MD, Zora Marjanovic, MD, Judith Valcke, MD, Bernard Lorcerie, MD, Yves Gruel, MD, Philippe Solal-Celigny, MD, Christine Le Maignan, MD, Jean Marc Extra, MD, Paul Cottu, MD, Dominique Farge, MD. Arch Intern Med. 2002;162:1729-1735

Prepared by: Dr. Sharon Watanabe

Received during: Journal Club, Tertiary Palliative Care Unit, Grey Nuns Community Hospital

Abstract:
Background The use of warfarin sodium for treating venous thromboembolism in patients with cancer is associated with a significant risk of recurrence and bleeding. The use of low-molecular-weight heparin sodium for secondary prevention of venous thromboembolism in cancer patients may reduce the complication rate.
Objective To determine whether a fixed dose of subcutaneous low-molecular-weight heparin is superior to oral warfarin for the secondary prophylaxis of venous thromboembolism in patients with cancer and venous thromboembolism.
Methods In a randomized, open-label multicenter trial performed between April 1995 and March 1999, we compared subcutaneous enoxaparin sodium (1.5 mg/kg once a day) with warfarin given for 3 months in 146 patients with venous thromboembolism and cancer.
Main Outcome Measure A combined outcome event defined as major bleeding or recurrent venous thromboembolism within 3 months.
Results Of the 71 evaluable patients assigned to receive warfarin, 15 (21.1%; 95% confidence interval [CI], 12.3%-32.4%) experienced one major outcome event compared with 7 (10.5%) of the 67 evaluable patients assigned to receive enoxaparin (95% CI, 4.3%-20.3%; P = .09). There were 6 deaths owing to hemorrhage in the warfarin group compared with none in the enoxaparin group. In the warfarin group, 17 patients (22.7%) died (95% CI, 13.8%-33.8%) compared with 8 (11.3%) in the enoxaparin group (95% CI, 5.0%-21.0%; P = .07). No difference was observed regarding the progression of the underlying cancer or cancer-related death.
Conclusions These results confirm that warfarin is associated with a high bleeding rate in patients with venous thromboembolism and cancer. Prolonged treatment with low-molecular-weight heparin may be as effective as oral anticoagulants and may be safer in these cancer patients.

Comments:
Strengths/uniqueness: This is the first published trial directly comparing warfarin and low molecular weight heparin for treatment of thromboembolism in cancer patients. Study strengths include randomization, intention-to-treat analysis, well-balanced groups, and completeness of follow-up. Although physicians and patients were not blinded to treatment assignment, the outcome assessors were unaware of group allocation, reducing the risk of bias.

Weaknesses: Unfortunately, the trial was terminated prematurely due to a slow rate of patient accrual. Although a trend towards fewer major bleeding episodes was observed in the enoxaparin arm, the study had inadequate power to demonstrate a statistically significant difference.

Relevance to Palliative Care: Thromboembolism is a common occurrence in palliative patients, associated with significant morbidity and mortality. As the study was conducted in patients with a life expectancy of greater than three months, some of whom were in remission, the results are not generalizable to patients in the terminal phase of illness. Ultimately, the results of this study are inconclusive, and trials with larger numbers of patients are required. Economic implications must also be considered.

Symptom Assessment in Advanced Palliative Home Care for Cancer Patients Using the ESAS: Clinical aspects. Downloadable PDF File

Heedman P, Strang P. Anticancer Research 2001; 21:4077-4082

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Four hundred and thirty-one cancer patients were assessed with the ESAS and a VAS-QoL at admission to Hospital-based Home Care (HBHC) and followed subsequently.
Results: Pain and nausea were well-controlled (mean 2.5 and 1.8) whereas patients were less satisfied with appetite, activity and sense of well-being. Dyspnoea and anxiety (lung cancer, p<0.001 and p < 0.01) and pain (prostrate cancer, p < 0.01), were related to diagnosis while activity, drowsiness, appetite and well-being to survival (p < 0.05 to p < 0.001). The correlations between individual symptoms and well-being were low (0.2 - 0.5), whereas the correlation between well-being and the Symptom Distress Score (SDS) was 0.76. "Well-being" was a better word to use than QoL.
Discussion: ESAS is useful in HBHC and data show that symptoms other than merely pain and nausea are of importance. As the global measurement (VAS) of well-being has a high correlation with SDS, this single measurement may be clinically adequate for quality assurance of symptom control in dying cancer patients.

Comments:

Strengths/uniqueness:
This study is of a relatively large cohort of advanced cancer patients routinely assessed at home using the ESAS, and provides data resulting in useful correlations of clinical relevance.

Weaknesses:
There is no mention of the problem of ESAS use in cognitively impaired patients. It seems unlikely that virtually all patients admitted to this home-based program were cognitively intact. It is also possible that patients too impaired to give meaningful results completed some ESAS scores during the study.

Relevance to Palliative Care:
This report adds to the literature of clinical programs that have found the ESAS a useful routine tool for individual patient and program assessment. The correlation with the single-item of well-being is noteworthy.

Place of death and its predictors for local patients registered at a comprehensive cancer center. Downloadable PDF File

Bruera E, Russell N, Sweeney C, et al. J of Clinical Oncol. 2002; 20(8):2127-2133

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Purpose: To help with planning of a palliative care program, we reviewed the place of death of patients who were registered at our comprehensive cancer center and explored factors that predicted death in the hospital versus death at home.
Patients and Methods: A retrospective study was undertaken of local patients who were registered at the University of Texas MD Anderson Cancer Center and died during the 1997/1998 fiscal year. Data from the institutional tumor registry and from the State of Texas Bureau of Vital Statistics file were collected and analyzed. The main outcome measures were place of death, patient characteristics associated with place of death, and time from registration at the institution to death.
Results: Of 1,793 local patients, 251 (14%) died at MD Anderson Cancer Center; the remaining 86% died elsewhere. A total of 617 (34%) died at home, and 929 (52%) died in an acute hospital setting (including MD Anderson). A total of 1,040 (58%) died within 2 years of registration. The risk of hospital death versus home death increased for patients with cancer at a hematological site (odds ratio [OR], 4.4; 95% confidence interval [CI] 2.8 to 6.8) and black ethnicity (OR, 1.9; 95% CI, 1.4 to 2.6) and decreased for patients who paid with Medicare (OR, 0.71; 95% CI, 0.57 to 0.90).
Conclusion: Most patients died in an acute care hospital setting and within 2 years of registration. Our data show some predictors of hospital death for cancer patients and suggest that better hospital palliative care services and integrated palliative care systems that bridge community and acute hospitals are needed.

Comments:

Strengths/uniqueness:
This is an original report that used existing databases to look at possible influences on location of death of cancer patients seen in a major internationally renowned cancer centre.

Weaknesses:
The retrospective nature of the information and limited databases, means that patient and family preference for location of death, and other variables such as nursing home deaths and financial and social support issues, could not be well explored.

Relevance to Palliative Care:
The report provides useful information and a challenge to institutes similar to the MD Anderson Cancer Center, to consider how they could work with local and community organizations to enhance integrated continuity of care to palliative care patients.

"End-of-life care for seniors: public and professional awareness". Downloadable PDF File

Ross M. M., MacLean M. J., Fisher R. Educational Gerontology, 28: 353-366, 2002

Prepared by: Carleen Brenneis, Program Director, Edmonton Regional Palliative Care Program

Received during: Case Rounds, September 10, 2002

Abstract:

Seniors living with disease or dying should be able to receive competent, comprehensive and compassionate end-of-life care that offer dignity, self-determination, and relief from pain and suffering. Such care is predicated on an informed public as well as health and social service providers who are well trained in end-of life issues and appropriate approaches. There is, however, little evidence that seniors and their families are adequately informed about end-of-life issues or their treatment and care options. Furthermore, health and social service providers do not predictably receive the education and training necessary to ensure a high quality of end-of-life care for seniors. This paper discusses public and professional awareness and offers strategies aimed at increasing awareness of end-of-life issues. These strategies also support the development of an approach to end-of-life care for seniors that is caring, compassionate and ethically, spiritually, and culturally appropriate. The article contributes to an emerging agenda directed at ensuring that all seniors receive end-of-life care that allows a positive conclusion to their lives.

Comments:

Strengths:
· The authors base their approach on the principles of maintenance of autonomy and self determination in decision making, stating seniors are well aware of the naturalness of dying (in contrast to the current medicalization of dying). This is discussed within the model of the "heightened awareness of finitude" (Marshall, 1986). This was an interesting and helpful view.
· The authors discuss that gerontology and palliative care tend to work in isolation from one another and encouraged multidisciplinary collaboration. The discussion of the difficulty in working in multi/interdisciplinary teams and encouraged redefinition of roles to include interdependence.
· Good summary of the need for heightened professional awareness discussing medicalization of death, neglected area of research, and an emphasis on individual rather than collaborative practice.
Weaknesses:
· The discussion of awareness of finitude among families seemed to be focused on one study of wives giving up care for their husbands and institutionalizing them. It does not fit with the context of the article
· Although the strategies seem appropriate and discuss increasing both public and professional awareness, they are very broad in nature
· The authors do not discuss how to increase "public debate to clarify individual, community and societal perspectives" It is our experience it is difficult to engage the public in discussions about dying unless they have experience with family.
Relevance to Palliative Care:
· It is helpful that journals not usually focused on palliative care discuss the broader context of dying for seniors. The discussion is consistent with palliative care literature.

Effect of Topical Morphine for Mucositis-Associated Pain following Concomitant Chemoradiotherapy for Head and Neck Carcinoma (Downloadable PDF File)

Cerchietti, L. et al .Cancer, November 15, 2002; 95(10): 2230-2236

Prepared by: : Gary Frank, RN

Received during: Regional Palliative Care Program Case Rounds; Dec. 10, 2002

Abstract:

26 patients with head and neck malignancies treated with concomitant chemoradiotherapy and experiencing severe painful mucositis were enrolled in a unicenter, randomized, controlled parallel comparison between 2% morphine mouth wash (14 patients) and a magnesium aluminum hydroxide plus viscous lidocaine plus diphenhydramine mouth wash (12 patients). Primary endpoints measured were: duration of severe pain (3.5 days less in morphine group), intensity of oral pain (1.5 points less in morphine group on 0-10 scale), and duration of severe functional impairment (5.5 days less in morphine group). Secondary endpoints included: need for supplementary analgesia (46% less in morphine group), infections (not significant), and local side effects (35% less in morphine group).

Comments:

Strengths: Fairly well-designed, simple but innovative study of a very practical approach to a very serious and increasingly common treatment-related symptom. Reference to basic science and clinical studies on the peripheral action of morphine and other opioids provides a convincing theoretical argument for the mechanism of action of the morphine mouth wash used. Good endpoint measures. Systemic opioid-sparing effect demonstrated in morphine group. Good inclusion/exclusion criteria. Patient characteristics and cancer treatment well-described.

Weaknesses: Not blinded. Limited sample size.

Relevance to Palliative Care: Very relevant. It is not uncommon to encounter patients still struggling with mucositis months after ceasing active treatment. Standard interventions to date have had mediocre results. The proposed treatment is easily accessible, cheap, practical, has a good theoretical basis, and seems effective. Warrants further study.

Symptom Assessment in Advanced Palliative Home Care for Cancer Patients Using the ESAS: Clinical aspects (Downloadable PDF File)

Heedman P, Strang P. Anticancer Research 2001; 21:4077-4082

Prepared by: : Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Four hundred and thirty-one cancer patients were assessed with the ESAS and a VAS-QoL at admission to Hospital-based Home Care (HBHC) and followed subsequently.
Results: Pain and nausea were well-controlled (mean 2.5 and 1.8) whereas patients were less satisfied with appetite, activity and sense of well-being. Dyspnoea and anxiety (lung cancer, p<0.001 and p < 0.01) and pain (prostrate cancer, p < 0.01), were related to diagnosis while activity, drowsiness, appetite and well-being to survival (p < 0.05 to p < 0.001). The correlations between individual symptoms and well-being were low (0.2 - 0.5), whereas the correlation between well-being and the Symptom Distress Score (SDS) was 0.76. "Well-being" was a better word to use than QoL.
Discussion: ESAS is useful in HBHC and data show that symptoms other than merely pain and nausea are of importance. As the global measurement (VAS) of well-being has a high correlation with SDS, this single measurement may be clinically adequate for quality assurance of symptom control in dying cancer patients.

Comments:

Strengths/uniqueness:
This study is of a relatively large cohort of advanced cancer patients routinely assessed at home using the ESAS, and provides data resulting in useful correlations of clinical relevance.

Weaknesses:
There is no mention of the problem of ESAS use in cognitively impaired patients. It seems unlikely that virtually all patients admitted to this home-based program were cognitively intact. It is also possible that patients too impaired to give meaningful results completed some ESAS scores during the study.

Relevance to Palliative Care:
This report adds to the literature of clinical programs that have found the ESAS a useful routine tool for individual patient and program assessment. The correlation with the single-item of well-being is noteworthy.

Dying in Hospital: Medical Failure or Natural Outcome?(Downloadable PDF File)

Sue Middlewood, Glen Gardner, Anne Gardner
Journal of Pain & Symptom Manag. Vol 22 no 6 1035-1041.

Prepared by: : Carleen Brenneis

Received during: Case Rounds, RPCP

Abstract:

The purpose of this study was to describe patterns of medical and nursing practice in the care of patients dying of oncological and hematological malignancies in the acute care setting in Australia. A tool validated in a similar American study was used to study the medical records of 100 consecutive patients who died of malignancies before August 1000 at the Canberra Hospital in the Australian Capital Territory. The 3 major indicators of patterns of end of life care were documentation of Do Not Resuscitate (DNR) orders, evidence that the patient was considered dying, and the presence of a palliative care intention. Findings were that 88 patients had documented DNR, 63 patients' records suggested that the patient was dying, and 74 patients had evidence of a palliative care plan. 46 patients were documented DNR 2 days or less prior to death. Similar patterns emerged for days between considered dying and death, and between palliative care goals and death. 60 patients had active treatment in progress at the time of death. The late implementation of end of life management plans and the lack of consistency within these plans suggested that patients were subjected to medical interventions and investigations up to the time of death. Implications for palliative care team include the need to educate health care staff and to plan and implement policy regarding the management of dying patients in the acute care setting. Although the health care system in Australia has cultural differences when compared to the American context, this research suggests that the treatment imperative to prolong life is similar to that found in American based studies.

Comments:

Strengths:
· This retrospective chart review utilizes a validated tool used by Finn & colleagues to complete a chart review of 100 consecutive patients who died in hospital from an oncological or hematological malignancy over a one-year period.
· The tool allows for both quantitative and qualitative data to be reviewed utilizing data triangulation. (this term is not defined for the reader, but a reference is used)
· Rater reliability was addressed through a pilot of the first 10 charts being reviewed independently by at least one researcher. An experienced oncology nurse extracted the information.
· The authors acknowledge cultural differences and identify 3 ways the study could inform practice, as listed in the abstract. These are very useful.
· The authors identify the need for prospective work that would identify admissions other than when the patient dies and to gather information from other sources than the chart.

Weaknesses:
· Always an issue in palliative care is how one determines from a chart whether the patient is "palliative" and typical coding will not determine this. The authors considered a patient to be dying when certain key words such as "end stage, dying or prognosis grim" were used. They determined the presence of a palliative care plan by words such as "comfort care, supportive care"
· It is clear from the reason for admission that at least 8/100 were admitted for active treatment, with 17 receiving chemotherapy and 14 admitted to ICU suggesting active treatment was the focus of care. Not every patient admitted would be expected to have a palliative care plan if death was not expected. This is a common and acknowledged weakness for retrospective chart reviews.
· The authors suggest in their discussion that "subjecting dying patients to medical interventions no doubt adds to rather than reduces their suffering." There are times when interventions such as blood work, radiographs are taken to determine the cause of a symptom to know best how to treat it, and should be considered appropriate. The authors do not discuss this issue.
· The term "active treatment in progress at the time of death" is problematic. Does not everyone deserve active care to provide comfort? The term active can be misunderstood.
· It is unclear from the description if the hospital has a palliative care or symptom management team and if so if the impact of that team was included.

Nurses' experiences with hospice patients who refuse food and fluids to hasten death. Downloadable PDF File

Ganzini L, Goy ER, Miller LL, et al. The New England J of Medicine 2003; 349(4):359-365

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Background: Voluntary refusal of food and fluids has been proposed as an alternative to physician-assisted suicide for terminally ill patients who wish to hasten death. There are few reports of patients who have made this choice.
Methods: We mailed a questionnaire to all nurses employed by hospice programs in Oregon and analyzed the results.
Results: Of 429 eligible nurses, 307 (72 percent) returned the questionnaire, and 102 of the respondents (33 percent) reported that in the previous four years they had cared for a patient who deliberately hastened death by voluntary refusal of food and fluids. Nurses reported that patients chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8.
On the basis of the hospice nurses' reports, the patients who stopped eating and drinking were older than 55 patients who died by physician-assisted suicide (74 vs. 64 years of age, p < 0.001), less likely to want to control the circumstances of their death (p < 0.001), and less likely to be evaluated by a mental health professional (9 percent vs. 45 percent, p < 0.001).
Conclusions: On the basis of reports by nurses, patients in hospice care who voluntarily choose to refuse food and fluids are elderly, no longer find meaning in living, and usually die a "good" death within two weeks after stopping food and fluids.

Comments:

Strengths/uniqueness:
This is a straightforward retrospective survey of nurses' opinions on hospice patients refusing food and fluid. The methods and results are well described and clearly presented.

Weaknesses:
These are detailed thoroughly by the authors who describe six study problems.

Relevance to Palliative Care:
This is an original report on a topic increasingly reported anecdotally in the literature. While this study has significant weaknesses, it is an important step to begin research in this area.

Patterns of functional decline at the end of life. Downloadable PDF File

Lunney JR, Lynn J, Foley D, et al. JAMA 2003; 289(18):2387-2392.

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Context: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations.
Objective: To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty.
Design, Setting, and Participants: Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death.
Main Outcome Measures: Self- or proxy-reported physical function (performance of 7 activities of daily living (ADLs) within 1 year prior to death; predicted ADL dependency prior to death.
Results: Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval {CI}] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P = .20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P < .001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P < .001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P <.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]).
Conclusions: Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.

Comments:

Strengths/uniqueness:
A large patient cohort was used to provide useful information demonstrating the different potential trajectory of decline in varying disease states.

Weaknesses:
The data set used was limited to patients over age 65, which excludes a large component of cancer patients and may not be sufficiently representative of all diseases, e.g. cardiac. As noted by the authors the study design relies on means of cohort subsets for monthly intervals and cannot follow individual decline.

Relevance to Palliative Care:
The variation in functional decline across different diseases emphasizes the difficulty in providing care in a funding model that requires more certainty in prognosis estimation. This has limited hospice/palliative care mainly to cancer populations. The development of end-of-life care services to these varying patients is an ongoing challenge.

A survey of nursing and medical staff views on the use of cardiopulmonary resuscitation in the hospice. Downloadable PDF File

Thorns AR, Ellershaw JE. Palliative Medicine 1999; 13:225-232

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Research evidence suggests that cardiopulmonary resuscitation (CPR) would be indicated in very few hospice patients. However, with the increasing access and expansion of specialist palliative care services the question of CPR is becoming more important. In order to develop a policy in our unit we felt it was important to assess the understanding, attitudes and experience of the health care professionals involved. A semi-structured questionnaire regarding CPR issues, including case scenarios, was distributed to doctors and registered nurses in a palliative care unit. Thirty-seven (80%) of the questionnaires were returned. Ten per cent of respondents identified patients for whom they felt CPR would have been indicated in the event of an unexpected cardiac arrest. Thirty-two per cent could foresee the number of patients in this category increasing in the future. The majority of respondents indicated that CPR should be discussed in certain cases, however 86% had never done so. The success rate of CPR was frequently overestimated. Some respondents felt vulnerable as there was no existing written policy. Factors thought important in making decisions regarding CPR orders included: prognosis; patient's wishes; quality of life; and legal issues. CPR in palliative care units raises many practical and ethical concerns. Our survey shows that staff are aware of the small, but increasing, need for its consideration in certain cases. There was a wide range of views regarding the role of CPR with an overestimation of the chances of success and concerns regarding discussion of the issue with patients. When introducing a CPR policy in a palliative care unit, adequate education and framework for decision making is required.

Comments:

Strengths/uniqueness:
This is an original report that systematically examines the opinion of nurses and physicians on a palliative care unit with regard to CPR issues.

Weaknesses:
The respondents were limited to staff on one palliative care unit, and thus generalizability of findings to other countries and cultures may be limited.

Relevance to Palliative Care:
This is a challenge to the standard dogma that all patients admitted to a palliative care unit need to agree or be designated as "no CPR".

Randomized Clinical Trial of an Implantable Drug Delivery System Compared With Comprehensive Medical Management for Refractory Cancer Pain: Impact on Pain, Drug-Related Toxicity, and Survival. Downloadable PDF File

Smith TJ, Staats PS, Deer T, et al. J of Clinical Oncology 2002; 29(19):4040-4049.

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Purpose: Implantable intrathecal drug delivery systems (IDDSs) have been used
to manage refractory cancer pain, but there are no randomized clinical trial (RCT) data comparing them with comprehensive medical management (CMM).
Patients and Methods: We enrolled 202 patients on a RCT of CMM versus IDDS plus CMM. Entry criteria included unrelieved pain (visual analog scale [VAS] pain scores = 5 on a 0 to 10 scale). Clinical success was defined as = 20% reduction in VAS scores, or equal scores with = 20% reduction in toxicity. The main outcome measure was pain control combined with change of toxicity, as measured by the National Cancer Institute Common Toxicity Criteria, 4 weeks after randomization.
Results: Sixty of 71 IDDS patients (84.5%) achieved clinical success compared with 51 of 72 CMM patients (70.8%, P = .05). IDDS patients more often achieved = 20% reduction in both pain VAS and toxicity (57.7% [41 of 71] vs 37.5% [27 of 72], P = .02). The mean CMM VAS score fell from 7.81 to 4.76 (39% reduction); for the IDDS group, the scores fell from 7.57 to 3.67 (52% reduction, P = .055). The mean CMM toxicity scores fell from 6.36 to 5.27 (17% reduction); for the IDDS group, the toxicity scores fell from 7.22 to 3.59 (50% reduction, P = .004). The IDDS group had significant reductions in fatigue and depressed level of consciousness (P < .05). IDDS patients had improved survival, with 53.9% alive at 6 months compared with 37.2% of the CMM group (P = .06).
Conclusion: IDDSs improved clinical success in pain control, reduced pain, significantly relieved common drug toxicities, and improved survival in patients with refractory cancer pain.

Comments:

Strengths/uniqueness:

This is an original study with an interesting and well-described design that compares spinal opioids to best medical management.

Weaknesses:

The unblinded study design is a weakness, but it would be very difficult to blind patients given the nature of IDDS.

Relevance to Palliative Care:

This data does suggest that IDDS delivery may offer benefit for some cancer patients, however more research is required to determine which patient subset would be mostly likely to benefit.

Long-term palliative care workers: More than a story of endurance. Downloadable PDF File

Webster J, Kristjanson LJ. J of Palliative Medicine 2002; 5(6): 865-875.

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

This study explored the stories of long-term palliative care workers to generate an understanding of their experiences of working in palliative care for an extended period of time. Six health professionals participated in the study, all of whom were currently working in a palliative care service and had been working continuously in palliative care services for a minimum of 5 years. Descriptions of their experiences provided insight into the reasons for choosing this work, the stages they went through along the way, and the factors that sustain and challenge them as they continue to work in the area. Five phases in the trajectory of working in palliative care were described: The Awakening, Making the Connection, Committing to the Philosophy, Reaping the Rewards, and Soldiering On. Results from this study may be helpful to educators and administrators who endeavour to develop and support this workforce. Furthermore, the descriptions provided in this study may provide direction for individuals working in palliative care who may be called on to reflect on their own work trajectory and their commitment to the field.

Comments:

Strengths/uniqueness:
This is a well-designed and well-described qualitative study exploring in detail the experience of veteran palliative care workers. Well-chosen vignettes from the participants enhance the report.

Weaknesses:
These are acknowledged in the report and include dependence on recall over a one hour interview, and uncertainty in regard to whether new palliative care workers in a different time and stage of development of palliative care, would identify similar experiences.

Relevance to Palliative Care:
This is an interesting report for individual palliative care workers to do self-reflection, and identify their own stage of development and satisfaction with their current palliative care careers. Some reports from other cultures and countries would be useful additions to this literature.

Trends in the place of death of cancer patients, 1992-1997. . Downloadable PDF File

Burge F, Lawson B, Johnston G. CMAJ 2003; 168(3):265-270

Prepared by: Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

Background: Although many patients with cancer would prefer to die at home, most die in hospital. We carried out a study to describe the yearly trends in the place of death between 1992 and 1997 and to determine predictors of out-of-hospital death for adults with cancer in Nova Scotia.
Methods: In this population-based study, we linked administrative health data from 2 databases - the Nova Scotia Cancer Centre Oncology Patient Information System and the Queen Elizabeth II Health Sciences Centre Palliative Care Program - for all adults in Nova Scotia who died of cancer from 1992 to 1997. We also used grouped neighbourhood income information from the 1996 Canadian census. Death out of hospital was defined as death in any location other than an acute care hospital facility. We used logistic regression analysis to identify the odds of dying out of hospital over time and to identify factors predictive of out-of-hospital death.
Results: A total of 14,037 adults died of cancer during the study period. The data for 101 people were excluded because of missing information regarding place of death. Of the remaining 13,936 people, 10,266 (73.7%) died in hospital and 3,670 (26.3%) died out of hospital. Over the study period the proportion of people who died out of hospital rose by 52%, from 19.8% (433/2,182) in 1992 to 30.2% (713/2,359) in 1997. Predictors associated with out-of-hospital death included year of death (for 1997 v. 1992, adjusted odds ratio [OR] 1.8, 95% confidence interval [CI] 1.5 -2.0), female sex (adjusted OR 1.2, 95%, CI 1.1-1.3), age (for = 85 v. 18-44 years, adjusted OR 2.2, 95% CI 1.7-2.8), length of survival (for 61-120 v. = 60 days, adjusted OR 2.2, 95%, CI 1.8-2.6; for 121-180 v. = 60 days, adjusted OR 2.5 95% CI 2.2-2.8), having received palliative radiation (adjusted OR 0.8, 95% CI 0.7-0.9) and region of death (Cape Breton v. Halifax, adjusted OR 0.5, 95% CI 0.5-0.6). Among Halifax residents, registration in the Palliative Care Program was also a significant predictor of out-of hospital death (adjusted OR 1.4, 95% CI 1.2-1.7). Tumour group, neighbourhood income and residence (urban v. rural) were not predictive of out-of-hospital death in multivariate analysis.
Interpretation: Over time, more patients with cancer, especially women, elderly people and people with longer survival after diagnosis, died outside of hospital in Nova Scotia.

Comments:

Strengths/uniqueness:
The use of administrative databases resulted in this study having a large cohort of patients. The authors were careful to include well-described characteristics in their attempt to assess predictors of location of death.

Weaknesses:
The overall access to the palliative care program in Halifax for the overall 5-year period remained low at 52%. The positive association between access to palliative care and a home death may at least partially be a reflection of limited hospital beds. Forcing a home death on patients and families due to a lack of other options such as in-patient hospices or palliative care units needs to be avoided.

Relevance to Palliative Care:
All palliative care programs need to consider similar examinations of outcomes and predictors of death location as we meet the challenge of improving care at the end of life.

Factors influencing death at home in terminally ill patients with cancer: Systematic review.Downloadable PDF File
Gomes B, Higginson IJ. BMJ, dol:10.1136/bmj.38740.614954.55 (published 8 Feb 2006).

Prepared by: Dr. Robin L. Fainsinger

Received during: Journal Club (17th January, 2007), Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract

Objectives: To determine the relative influence of different factors on place of death in patients with cancer.
Data sources: Four electronic databases - Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals.
Review Methods: We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence.
Results: 58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important.
Conclusions: The network of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.

Comments

Strengths/uniqueness:
A rigorously designed and executed report that includes a large database of 58 reviewed studies. This represents over 1.5 million patients and 13 countries.

Weaknesses:
These are well described in the report. However the major concern is whether demonstrated associations are truly indicative of cause, e.g. patients on home care are already pre-selected for home deaths.

Relevance to Palliative Care:
The influences and direction of future initiatives to improve the care of patients dying at home is well illustrated. Unfortunately the risk is the continued emphasis on where patients die rather than where we help them to live with well-designed programs that offer options for differing circumstances.

Pain Assessment of Subcutaneous Injections.Downloadable PDF File
Prepared by: Monique Bielech, Pharmacist

Received during: Journal Rounds on the Tertiary Palliative Care Unit, March 14, 2007

Full Reference: Jorgensen JT, Romsing J, Rasmussen M, Moller-Sonnergaard J, Vang L, Musaeus L. Pain Assessment of Subcutaneous Injections. Ann Pharmacother 1996; 30:729-32.

Abstract:
Objective: To compare injection pain after subcutaneous administration of four different solution volumes.
Design: Double-blind, randomized, prospective, multiple crossover study.
Setting: Steno Diabetes Centre, Gentofte, Denmark.
Participants: Eighteen healthy volunteers, 9 women and 9 men, aged 21-30 years.
Methods: the subjects were injected with four different volumes (0.2, 0.5, 1.0, 1.5 mL) of NaC1 0.9%. The study was performed on 2 days with a 1-week washout period between the study days. On each study day the subjects received four injections in each thigh. To evaluate the validity of our pain assessing model the subjects received eight injections of 0.5 mL on one of the study days. Pain assessment was done immediately after each injection using both a 10-cm visual analog scale (VAS) and a six-item verbal rating scale (VRS).
Results: A significant difference in pain score on both the VAS (p<0.05) and the VRS (p<0.01) was seen between the four injection volumes. The pain was significantly increased with volumes of 1.0 and 1.5 mL. No significant difference in injection pain could be detected between 0.2 and 0.5 mL and between 1.0 and 1.5 mL. No significant period or carryover effect could be detected in the study. A significant correlation between the pain score on the VAS and the pain score on the VRS was found (r = 0.79, p<0.0001).
Conclusions: the pain of a subcutaneous injection is related to injection volume in the thigh. The results show that increasing the volume from 0.5 to 1.0 mL increases pain significantly. The findings from this study should be considered when injection preparations for subcutaneous administration are formulated. The volume should generally be less than 1.0 mL if injected into the thigh.

Comments
Strengths/uniqueness:
There is very little literature investigating the relationship of the volume of a SQ injection to the pain at the injection site. This study was double-blinded, randomized and prospective.

Weaknesses:
The injection site investigated was the thigh - a site not commonly used in drug administration in palliative care. Also the volunteers were young and healthy. The sample size was small - 18 patients.

Relevance to Palliative Care:
Many factors influence the pain of sub-cutaneous injections and being able to mitigate some of them is always a consideration for patient care.

Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.Downloadable PDF File

Clayton JM, Butow PN, Tattersall MHN, Devine RJ, Simpson JM, Aggarwal G, Clark KJ, Currow DC, Elliott LM, Lacey J, Lee PG, Noel MA.

Prepared by: Sharon Watanabe

Received during: Journal Club at CCI

Abstract:
PURPOSE: To determine whether provision of a question prompt list (QPL) influences advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a palliative care (PC) physician.
PATIENTS AND METHODS: This randomized controlled trial included patients randomly assigned to standard consultation or provision of QPL before consultation, with endorsement of the QPL by the physician during the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC services were invited to participate. Consultations were audiotaped, transcribed, and analyzed by blinded coders; patients completed questionnaires before, within 24 hours, and 3 weeks after the consultation.
RESULTS: A total of 174 patients participated (92 QPL, 82 control). Compared with controls, QPL patients and caregivers asked twice as many questions (for patients, ratio, 2.3; 95% CI, 1.7 to 3.2; P < .0001), and patients discussed 23% more issues covered by the QPL (95% CI, 11% to 37%; P < .0001). QPL patients asked more prognostic questions (ratio, 2.3; 95% CI, 1.3 to 4.0; P = .004) and discussed more prognostic (ratio, 1.43; 95% CI, 1.1 to 1.8, P = .003) and end-of-life issues (30% v 10%; P = .001). Fewer QPL patients had unmet information needs about the future ( 21 = 4.14; P = .04), which was the area of greatest unmet information need. QPL consultations (average, 38 minutes) were longer (P = .002) than controls (average, 31 minutes). No differences between groups were observed in anxiety or patient/physician satisfaction.
CONCLUSION: Providing a QPL and physician endorsement of its use assists terminally ill cancer patients and their caregivers to ask questions and promotes discussion about prognosis and end-of-life issues, without creating patient anxiety or impairing satisfaction.

Comments:

Strengths/uniqueness: This study comes from a group of investigators with extensive experience in communication research. It is of high methodological quality.

Weaknesses: Although there were statistically significant differences between the intervention and control groups in terms of numbers of questions asked and topics discussed, the absolute differences seemed small. Also, there were no differences in overall measures of achievement of information needs and satisfaction with the consultation (although "what to expect in future" was an unmet information need less often in the intervention group). The time provided to review the question prompt list prior to the consultation was quite short (20 minutes), and perhaps greater differences would have been seen if more time had been given. The results are specific to English-speaking advanced cancer patients who are able to attend an outpatient clinic and may not be generalizable to other populations.

Relevance to Palliative Care: The use of a question prompt list may have a modest positive effect on the number of questions asked and concerns discussed by patients and their caregivers during a palliative care consultation. Most palliative care physicians and teams would probably cover the topics at some point during their contact with the patient and caregiver. However, a question prompt list may be a useful tool for empowering patients and their caregivers to actively express their questions and concerns, and ensuring that their individual information needs are met.