Tuesday, 27 May 2008

Journal of palliative medicine, Jan-Feb 2008, vol. 11, no. 1

To sleep before we die...: when is palliative sedation an option for the dying person?
p. 131-2
Author affiliation

Health literacy in palliative medicine #153.
p. 105-6
Reisfield-Gary-M, Wilson-George-R.

Palliative medicine review: prognostication.
p. 84-103, 93 refs
Glare-Paul-A, Sinclair-Christian-T.
Prognostication, along with diagnosis and treatment, is a traditional core clinical skill of the physician. Many patients and families receiving palliative care want information about life expectancy to help plan realistically for their futures. Although underappreciated, prognosis is, or at least should be, part of every clinical decision. Despite this crucial role, expertise in the art and science of prognostication diminished during the twentieth century, due largely to the ascendancy of accurate diagnostic tests and effective therapies. Consequently, Doctor, how long do I have? is a question most physicians find unprepared to answer effectively. As we focus on palliative care in the twenty-first century, prognostication will need to be restored as a core clinical proficiency. The discipline of palliative medicine can provide leadership in this direction. This paper begins by discussing a framework for understanding prognosis and how its different domains might be applied to all patients with life limiting illness, although the main focus of the paper is predicting survival in patients with cancer. Examples of prognostic tools are provided, although the subjective assessment of prognosis remains important in the terminally ill. Other issues addressed include: the importance of prognostication in terms of clinical decision-making, discharge planning, and care planning; the impact of prognosis on hospice referrals and patient/family satisfaction; and physicians' willingness to prognosticate.

Prognosticating: the end of a series. Introduction.
p. 82-3
Liao-Solomon, Arnold-Robert-M.

Palliative sedation as part of a continuum of palliative care.
p. 76-81
Carr-Mark-F, Mohr-Gina-Jervey.
Three issues seem to animate those who advocate the move toward a broad allowance of physician-assisted death. The first is the supposed failure of palliative care in extreme cases. We challenge the notion that palliative care ever fails. When palliative sedation is understood to be a routine continuation of palliative care, as opposed to a last-ditch response to a dramatic failure, then palliative care will never fail. The second focuses on helping patients maintain a sense of control in their final days and hours. We believe that continued intimate involvement in each of the final stages that is essential in the palliative care-palliative sedation continuum will be more effective palliative care and still grant control to the patient under the principle of respect for autonomy. The third issue is the charge that palliative sedation is a euphemism for physician-assisted death. We reject that charge.

A nationwide VA palliative care quality measure: the family assessment of treatment at the end of life.
p. 68-75
Casarett-David, Pickard-Amy, Bailey-F-Amos, Ritchie-Christine-Seel et al
OBJECTIVES: To evaluate the FATE (Family Assessment of Treatment at End of Life) Survey for use as a nationwide quality measure in the VA health care system. DESIGN: Nationwide telephone survey. SETTING: Five VA medical centers. PARTICIPANTS: Eligible patients received inpatient or outpatient care from a participating VA facility in the last month of life. One respondent/patient was selected using predefined eligibility criteria and invited to participate. MEASUREMENTS: The FATE survey consists of 32 items in 9 domains: Well-being and dignity (4 items), Information and communication (5 items), Respect for treatment preferences (2 items), Emotional and spiritual support (3 items), Management of symptoms (4 items), Choice of inpatient facility (1 item), Care around the time of death (6 items), Access to VA services (4 items), and Access to VA benefits after the patient's death (3 items). RESULTS: Interviews were completed with 309 respondents. The FATE showed excellent psychometric characteristics, with good homogeneity (e.g., Cronbach (alpha = 0.91) and no evidence of significant ceiling effects. The FATE also demonstrated good discriminant validity. For instance, FATE scores varied across facilities (range 44-72; Kruskal Wallis test p < 0.001). Patients who were seen by a palliative care service had better scores (mean 66 versus 52; rank sum test p < 0.001), as did patients who were referred to hospice (67 versus 49; rank sum test p < 0.001). CONCLUSIONS: The FATE survey offers an important source of quality data that can be used to improve the end-of-life care of all veterans, regardless of the type of care they receive or their site of death.

(Using) complementary and alternative medicine: the perceptions of palliative patients with cancer.
p. 58-67
Eliott-Jaklin-A, Kealey-Colin-P, Olver-Ian-N.
Use of complementary and alternative medicine (CAM) is increasingly common within Western societies, including Australia. This parallels calls for or claims of integration of CAM into mainstream medical practice, with oncology and palliative care specifically nominated as appropriate arenas for integration. However, there is an absence of studies examining patient perceptions of both CAM and CAM users. In this study, 28 adult patients with cancer close to death were interviewed regarding treatment decisions at the end of life, including decisions about CAM. Thematic analysis of transcribed interviews found consistent differences in talk around CAM between 12 users and 16 nonusers of CAM, primarily related to the perceived value of these treatments. Drawing upon a mind-body discourse that holds individuals responsible for their health, users valued CAM for the perceived benefit to physical or psychological well-being and compatibility with a holistic approach to health care, deemed to complement or augment conventional medicine. However, some were self- critical of their failure to continue with CAM, despite practical and financial difficulties experienced. Nonusers devalued CAM as unable to cure their disease (but did not similarly devalue conventional medicine), and negatively construed CAM users as desperate, or as challenging medical wisdom. Despite increased legitimation and medicalization of CAM, patients assess CAM differently to allopathic medicine, with different (positive and negative) assessments attributable to users. The misperception by many (nonusers) that CAM are intended to cure and available negative moral and social judgments centred around CAM use may deter patient uptake of CAM in areas where they have proven efficacy in symptom control.

Interval between first palliative care consult and death in patients diagnosed with advanced cancer at a comprehensive cancer center.
p. 51-7
Osta-Badi-El, Palmer-J-Lynn, Paraskevopoulos-Timotheos et al
PURPOSE: Most referrals to palliative care and hospice occur late in the trajectory of the disease although an earlier intervention could decrease patients' symptom distress. The purpose of this study was to determine the interval between first palliative care consult (PC1) and death (D) in patients diagnosed with advanced cancer (aCA) at our comprehensive cancer center and if such interval has increased over time. METHODS: The study group was 2868 consecutive patients who had their PC1 during a 30-month period. We reviewed the charts for information about demographics, cancer type, date of cancer (CA) diagnosis, aCA diagnosis, PC1, and D. aCA was defined as locally recurrent or metastatic. RESULTS: One thousand four hundred four patients (49%) were female, 1791 (62%) were less than 65 years old, 2563 (89%) had solid tumors, and 2004 (70%) were white. The median PC1-D, aCA-PC1, aCA-D, and CA-D intervals were 42, 147, 250, and 570 days, respectively. The median PC1-D interval was longer in patients with solid tumors (p < 0.0001), less than 65 years old (p = 0.002), and females (p = 0.004). PC1-D was not affected by ethnicity (p = 0.42). The median PC1-D interval in 5 consecutive half-years was 46, 56, 42, 41, and 34 days, respectively (p = 0.02). The number of PC1 in this period increased from 544 to 654 (20%). The ratio of PC involvement in the aCA-D period (PC1-D/aCA-D) decreased from 0.30 to 0.26 over the 5 half-year periods (p = 0.0004). CONCLUSIONS: The first palliative care consultation to death interval has decreased over time at our center. Education is needed among our referring physicians for earlier access to palliative care. Prospective studies are needed to establish the appropriate timing of the first palliative care consultation.

Research funding for palliative medicine.
p. 36-43, 12 refs
Gelfman-Laura-P, Morrison-R-Sean.
BACKGROUND: Medical care for seriously ill patients has been acknowledged to be inadequate and multiple reports have called for increased investment in palliative medicine research. OBJECTIVE: To identify funding sources of palliative medicine research published form 2003-2005 and to examine National Institutes of Health (NIH) funding of palliative medicine research from 2001-2005. METHODS: We sought to identify United States publications related to adult palliative medicine research from 2003-2005 and their funding sources. We reviewed all articles published in the major palliative medicine journals and additionally, we reviewed all articles published in major medicine journals and relevant sub-specialty journals which were identified in Pub-Med using the key words palliative care, end-of-life care, hospice and end-of-life. From all identified articles, we abstracted all sources of funding detailed. We then compiled a list of U.S. palliative medicine researchers from 2001-2005 using the published first and last authors in the above article review, the editorial boards of palliative medicine journals, and other organizations. To examine NIH funding, we cross-matched this list of researchers against all NIH grants funded from 2001-2005. RESULTS: We identified 388 palliative medicine research articles and 2,197 investigators. Seventy-two percent of papers identified received extramural funding: 31% from the NIH, 51% from foundations, and 16% from other sources. Only 109 investigators received NIH funding and the National Cancer Institute (NCI), National Institute of Nursing Research (NINR), and National Institute on Aging (NIA) funded 85% of all NIH awards. CONCLUSIONS: Research funding, particularly federal funding, for palliative medicine research is inadequate to support improvements in care for the most seriously ill patients and their families.

Borders without Doctors.
p. 31-2

Expressive writing in patients receiving palliative care: a feasibility study.
p. 15-9
Bruera-Eduardo, Willey-Jie, Cohen-Marlene, Palmer-J-Lynn.
BACKGROUND: Patients with advanced cancer receiving palliative care often experience severe physical and psychosocial symptoms. However, there are limited resources for psychological and emotional support. Expressive writing has shown decreased anxiety level in young and healthy people suffering from a number of stressors. OBJECTIVE: The purpose of this study was to determine the feasibility of expressive writing in patients receiving palliative care and the most suitable outcomes of expressive writing in this patient population. DESIGN: In this pilot study, patients were randomly assigned to either the expressive writing group (EW) or the neutral writing group (NW). Anxiety level before and after the writing session was compared between the two groups. Writing materials were content analyzed using standard qualitative research methods. RESULTS: A total of 24 patients (12 in EW and 12 in NW) were enrolled in the study between October 2006 and January 2007. Although the majority of patients (83%-100%) were able to complete all baseline assessments, poor adherence was observed during the follow-ups. Only 8% of patients completed the 2-week study. There was no significant difference in the State-Trait Anxiety Inventory (STAI) State-Anxiety scores at baseline, before and after each writing session between the EW and NW groups. DISCUSSION: Our rapid accrual suggests that palliative care patients are interested in participating in studies such as expressive writing. The high level of adherence to the baseline assessments indicates that these assessments were not particularly difficult for our patients to complete. Future studies may need to include patients with better performance status, better patient education, means of emotional expression (i.e., audio recording, telephone interview) and improved adherence. CONCLUSION: We conclude that clinical trials of expressive writing in the palliative care setting are not feasible unless they undergo major modification in methods compared to those previous reported in other patient population. Our findings will hopefully assist researchers considering similar studies.

Social workers advocate for a seat at palliative care table.
p. 10-4
Meier-Diane-E, Beresford-Larry.

Team, diversity, and building communities.
p. 5-7

Evidence-based medicine and palliative care.
p. 2-4

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