media: The price of your soul: How the brain decides whether to 'sell out' (ethics/religion/money....)

"..."Our experiment found that the realm of the sacred – whether it's a strong religious belief, a national identity or a code of ethics – is a distinct cognitive process," says Gregory Berns, director of the Center for Neuropolicy at Emory University and lead author of the study. The results were published in Philosophical Transactions of the Royal Society.
Sacred values prompt greater activation of an area of the brain associated with rules-based, right-or-wrong thought processes, the study showed, as opposed to the regions linked to processing of costs-versus-benefits......"

When a Decision Must Be Made: Role of Computer Modeling in Clinical Cancer Research

Every day, multidisciplinary oncology teams make dozens of treatment decisions that may have a tremendous impact on a patient's survival and quality of life. Made with the best of intentions, these decisions are informed by basic science and clinical research findings, clinical experience, and health policy. All too often, results from the gold standard of clinical trial research, a randomized controlled trial (RCT), that fit the specific details of the patient's situation are not available to guide these decisions...........

Comments | Decisions at the end of life: have we come of age? full free access - open for commentary

Decisions at the end of life: have we come of age?

Linda Emanuel and Karen Glasser Scandrett

BMC Medicine 2010, 8:57doi:10.1186/1741-7015-8-57

Blog addressing educational, research and genetics needs in ovarian cancer/related populations

(Commentary) Sandi Pniauskas (19 October 2010) Ovarian Cancer and Us
Congratulations to the authors for addressing the issue of changing values and needs of patients at the close of life. Most North American studies on this topic err in their original suppositions regarding the preferred place of death. Generally the focus has been institutional and cost based as opposed to the values and ethics of yes, human dignity in dying. Specific to the needs of oncology patients/families, it is often disturbing to view reports asking citizens where they wish to die when we should know and understand that this answer cannot be of any value until those patients and families are 'in the moment'. The moment-to-moment changes in physical and emotional changes in cancer patients/families and all of the psycho-physio changes require that our systems adapt. Numerous real life examples of institutional/provider interference in the wishes of the dying are disturbingly unconscionable. The question which needs to be addressed is: 'Who's on 'first'?" Having witnessed circumstances where best practices were not followed in favour of cost analyses, we have to ask ourselves who will say no to money before suffering?
Competing interests
ovarian cancer survivor, Lynch Syndrome

Mayo Clinic - Mayo Clinic Review of Ethical Decision Making With End-of-Life Care

NCCS Self-Advocacy: Putting Your Skills into Action

Communicating	Solving Problems
Finding Information	Negotiating
Making Decisions	Standing Up for Your Rights

Uncertainty in Assessing Value of Oncology Treatments -- The Oncologist

abstract:
Patients, clinicians, payers, and policymakers face an environment of significant evidentiary uncertainty as they attempt to achieve maximum value, or the greatest level of benefit possible at a given level of cost in their respective health care decisions. This is particularly true in the area of oncology, for which published evidence from clinical trials is often incongruent with real-world patient care, and a substantial portion of clinical use is for off-label indications that have not been systematically evaluated.
It is this uncertainty in the knowledge of the clinical harms and benefits associated with oncology treatments that prevents postregulatory decision makers from making accurate assessments of the value of these treatments. Because of the incentives inherent in the clinical research enterprise, randomized control trials (RCTs) are designed for the specific purpose of regulatory approval and maximizing market penetration.
The pursuit of these goals results in RCT study designs that achieve maximal internal validity at the expense of generalizability to diverse real-world patient populations that may have significant comorbidities and other clinically mitigating factors.
As such, systematic reviews for the purposes of coverage and treatment decisions often find relevant and high-quality evidence to be limited or nonexistent. For a number of reasons, including frequent off-label use of medications and the expedited approval process for cancer drugs by the U.S. Food and Drug Administration, this situation is exacerbated in the area of oncology.....

"Until scientific advancements in treatment occur, significant gaps in real-world evidence will be pervasive in the area of oncology. This situation has negative consequences for a variety of players in health care, from patients and physicians to payers and policymakers. Addressing these gaps would result in better decisions that improve patient outcomes and reduce unnecessary costs."

Blog: Preempting End-of-Life Decisions

"I do not want my life to be prolonged if, to a reasonable degree of medical certainty, my situation is hopeless."
"I want my life to be prolonged as long as possible within the limits of generally accepted medical standards, even if this means that I might be kept alive on machines for years."

"Check one. That's one of the places where I'm stalled on making my advance medical directive."

Decision Model of Segmental Compared With Total Abdominal Colectomy for Colon Cancer in Hereditary Nonpolyposis Colorectal Cancer (Lynch Syndrome)

media news: Symptoms have little value for early detection of ovarian cancer including editorial commentary

Women's decision-making needs related to treatment for recurrent ovarian cancer: a pilot study

"abstract:
The purpose of this pilot study was to describe the decision-making needs of women with ovarian cancer related to treatment of recurrent disease. ..... CONCLUSIONS: The findings provide some beginning direction for an inter-professional decision support approach, as well as implications for future research.

full free access: Is no news good news? Inconclusive genetic test results in BRCA1 and BRCA2 from patients and professionals' perspectives

Small study but included view of patients and physician views.

Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

CO Early Release, published online ahead of print Apr 20 2009
Journal of Clinical Oncology, 10.1200/JCO.2008.20.4883


Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

M. Elisabeth Del Giudice,* Eva Grunfeld, Bart J. Harvey, Eugenia Piliotis, and Sunil Verma
Department of Family and Community Medicine and Dalla Lana School of Public Health, University of Toronto; Sunnybrook Health Sciences Centre; Ontario Institute of Cancer Research and Cancer Care Ontario, Health Services Research Program; and Divisions of Hematology and Medical Oncology, Department of Medicine, Odette Cancer Centre, Toronto, Ontario, Canada.

* To whom correspondence should be addressed. E-mail: lisa.delgiudice@sunnybrook.ca

Purpose: Routine follow-up of adult cancer survivors is an important clinical and health service issue. Because of a lack of evidence supporting advantages of long-term follow-up care in oncology clinics, there is increasing interest for the locus of this care to be provided by primary care physicians (PCPs). However, current Canadian PCP views on this issue have been largely unknown.

Methods: A mail survey of a random sample of PCPs across Canada, stratified by region and proximity to urban centers, was conducted. Views on routine follow-up of adult cancer survivors and modalities to facilitate PCPs in providing this care were determined.

Results: A total of 330 PCPs responded (adjusted response rate, 51.7%). After completion of active treatment, PCPs were willing to assume exclusive responsibility for routine follow-up care after 2.4 ± 2.3 years had elapsed for prostate cancer, 2.6 ± 2.6 years for colorectal cancer, 2.8 ± 2.5 years for breast cancer, and 3.2 ± 2.7 years for lymphoma. PCPs already providing this care were willing to provide exclusive care sooner. The most useful modalities PCPs felt would assist them in assuming exclusive responsibility for follow-up cancer care were (1) a patient-specific letter from the specialist, (2) printed guidelines, (3) expedited routes of rereferral, and (4) expedited access to investigations for suspected recurrence.

Conclusion: With appropriate information and support in place, PCPs reported being willing to assume exclusive responsibility for the follow-up care of adult cancer survivors. Insights gained from this survey may ultimately help guide strategies in providing optimal care to these patients.