Massachusetts Moves to Require End-of-Life Talks

Mass. Moves to Require End-of-Life Talks:
WBUR radio and Kaiser Health News report that the Massachusetts Senate has quietly approved a measure requiring doctors and nurses to discuss end of life options with patients who have a terminal illness. The Palliative Care Awareness bill was included as part of a sweeping health reform measure and, remarkably, was not controversial. It was supported by both Republicans and Democrats and by a wide range of advocacy groups, including leading right-to-life organizations.

JCO The Art of Oncology "Blindness: Looking but Not Seeing"

JCO:  Blindness: Looking but Not Seeing

"...Blindness can be a metaphor for failed communication.
To see can mean to look with one’s eyes,
but it can also mean to understand. Thus, a person
may be symbolically blind (ie, not understanding,
not connecting) or may be physically without sight....."

News : Many Primary Care Docs Don't Know Long-Term Effects of Chemo: Survey

Blogger's Note: general/non-ovarian cancer specific


HON - News : Many Primary Care Docs Don't Know Long-Term Effects of Chemo: Survey


"....The findings highlight the need for more communication between the different doctors involved in a patient's care, one expert stressed.

The burden of that communication lies not only with doctors (oncologists and primary care physicians) but also with patients, said Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City.....

paywalled: Why should I talk about emotion? Communication patterns associated with physician discussion of patient expressions of negative emotion in hospital admission encounters

Why should I talk about emotion? Communication patterns associated with physician discussion of patient expressions of negative emotion in hospital admission encounters

Objective 
To describe hospital-based physicians’ responses to patients’ verbal expressions of negative emotion and identify patterns of further communication associated with different responses.

Practice implications 
Providers should respond to expressions of negative emotion with statements that allow for or explicitly encourage further discussion of emotion.

Patient empowerment—who empowers whom? : The Lancet

Patient empowerment—who empowers whom? : The Lancet

The Lancet

 

"What is patient empowerment? Over 250 participants discussed this question at the first European Conference on Patient Empowerment, recently held in Copenhagen, Denmark, by the European Network on Patient Empowerment (ENOPE 2012). The conference was convened under the auspices of the Danish Presidency of the European Union (EU), and organised by the WHO Regional Office for Europe, Denmark's Ministry of Health, the Danish Committee for Health Education, the Caerum Foundation of Switzerland, and the English Expert Patient's group......

paywalled: Developing a useful, user-friendly website for cancer patient follow-up: users' perspectives on ease of access and usefulness - European Journal of Cancer Care

Developing a useful, user-friendly website for cancer patient follow-up: users' perspectives on ease of access and usefulness  - European Journal of Cancer Care 
 

Developing a useful, user-friendly website for cancer patient follow-up: users' perspectives on ease of access and usefulness

UK cancer survival has improved, leading to an increase in review patients and pressure on clinics......  Acceptability: Final evaluation (n= 103) was positive although many would like to maintain face-to-face hospital contact. User involvement in website design can ensure patient needs are met. A website model for follow-up will suit some patients but others will prefer clinical contact.

blogger: Hospitals, Practice Administrators and Clinicians: You Gotta Learn to Love Patient Ratings – Health Affairs Blog

Hospitals, Practice Administrators and Clinicians: You Gotta Learn to Love Patient Ratings – Health Affairs Blog

open access: What Is the Heart of Health Care? Advocating for and Defining the Clinical Relationship in Patient-Centered Care | Journal of Participatory Medicine

What Is the Heart of Health Care? Advocating for and Defining the Clinical Relationship in Patient-Centered Care | Journal of Participatory Medicine

abstract: End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition

End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition

Abstract: 

The aim of the present study is to describe end-of-life preferences of advanced cancer patients willing to talk about death issues. Eighty-eight advanced cancer patients were interviewed through End of Life Preferences Interview (ELPI), a 23-item interview covering a wide range of end-of-life care issues.

DNA donor rights affirmed : Nature News & Comment

DNA donor rights affirmed : Nature News & Comment

"It is a familiar scenario in genetic research: a subject's DNA is collected for one study, deposited in a database or biobank and then analysed by other researchers for separate studies. But what happens when a later study stumbles on something that could be of significance for the donor....."

"..... But, increasingly, geneticists are embracing the idea that research participants have a right to know of any unwelcome surprises in their genome...."

"The need to establish policies for the return of results has grown with the proliferation of whole-genome sequencing, says James Evans, editor-in-chief of Genetics in Medicine, which is publishing an entire issue on the return of results in genetic research, along with the consensus statement."

Does “Cancer” – The Word – Properly Explain “Cancer” – the Disease?

Does “Cancer” – The Word – Properly Explain “Cancer” – the Disease?:
by Jonathan Klein, MD
Often times, after explaining a diagnosis and treatment plan to a patient, physicians hear some variation on “my brother/sister/parent/friend/co-worker had cancer and received radiation/surgery/phase I clinical trial medication. Why am I not receiving this?” The answer may revolve around the idea that different cancers, even different cancers arising from the same part of the body, can be wildly different in biology, treatment, and prognosis. We obviously want to ensure that patients understand their options so that they can make informed decisions about their own care, but couldn’t the medical community do a better job of conveying this concept to the public even before people end up in our clinics?

We use the catch-all term “cancer” to refer to diseases within the body arising from uncontrollably dividing cells. It is a term familiar to everyone, and a diagnosis of cancer is a useful shorthand – it’s concise, easy to understand, and conveys a sense of seriousness around what lies ahead. But beyond that initial purpose, it’s largely insufficient.

press release: Problems in cancer care are not uncommon

 Blogger's Opinion: although this article focuses on breast cancer, there is of course a common theme, attention is deserved for those with less common/rare cancers as the dichotomies in care (access, research, outcomes.....) should be obvious

                        ~~~~~~~~~~~~~~~~~

Problems in cancer care are not uncommon

Public release date: 17-Apr-2012

Difficulties occur more often in communication than in medical care

Cancer care is increasingly complex, and as many as one in five cancer patients may experience "breakdowns" in their care, according to a new study in the Journal of Clinical Oncology. Such breakdowns include communication problems between patients and their care providers, as well as more traditional medical errors; both types of problems can create significant harms. In the study, communication problems outnumbered problems with medical care.

Kathleen Mazor, EdD, Assistant Director of the Meyers Primary Care Institute, in Worcester, MA, led the study, with researchers from the University of Washington, Group Health, and Kaiser Permanente. Their study was a project of the Cancer Research Network's Cancer Communication Research Center. They found that problematic events led to varied consequences, such as additional medical care, delayed recovery, emotional distress, and persistent damage to the relationship between patients and their doctors.

"For me, the take-home message is it's critical for us to listen to patients as we try to improve care," Dr. Mazor said. "The patients we spoke with were generous, articulate, and thoughtful in recounting their experiences, and were glad to share their stories because they wanted to make a difference. We also heard a lot of stories about physicians, nurses, and others who really helped make things better—in the aftermath of a problem or even in the absence of a problem."

Examining actions patients took following a breakdown, the research team found that only 13 percent formally reported the problem, choosing instead to focus on their health and their future. Nearly all patients indicated that the problem spurred them to take positive steps in their health care behaviors, such as asking more questions or researching symptoms and treatments. However, 10 percent of patients reported they became more hesitant to seek care. 

The study used telephone interviews rather than medical-chart documentation to understand how patients perceived their care experiences.

"It's vital that we hear directly from the patients," noted study co-author Sarah M. Greene, MPH. "The communication problems probably wouldn't have appeared in their medical record. But to the patient, they are as significant as a clinical adverse event, like a wrong dose of chemotherapy." Ms. Greene is a research associate at Group Health Research Institute in Seattle.

Both patients and clinicians need new ways to provide negative and positive feedback about cancer care, according to the authors, and these systems should include some patient and clinician education. Additionally, the study team noted that patients' perceptions of problems may differ from clinicians' perspectives, so educating clinicians is equally critical. The health systems in this study are currently exploring strategies to encourage both patients and clinicians to openly communicate about their care experiences and expectations.

This study "reminds us that substantial work is needed to optimize breast cancer care and, most importantly, communication," Jeffrey Peppercorn, MD, MPH, of Duke University Medical Center, wrote in an accompanying editorial.

###

The National Cancer Institute funded the study.
Dr. Mazor's and Ms. Greene's co-authors were Douglas Roblin, PhD, and Josephine Calvi, MPH, of Kaiser Permanente Georgia, in Atlanta; Kathryn Horner, MPH, of Group Health Research Institute; Celeste Lemay, RN, and Cassandra Firneno, BS, of Meyers Primary Care Institute, in Worcester, Massachusetts; and Thomas H. Gallagher, MD, an affiliate investigator at Group Health Research Institute who is based at the University of Washington School of Medicine's Department of Medicine.

Journal of Clinical Oncology The Journal of Clinical Oncology serves its readers as the single most credible, authoritative resource for disseminating significant clinical oncology research. In print and in electronic format, JCO strives to publish the highest quality articles dedicated to clinical research. Original Reports remain the focus of JCO, but this scientific communication is enhanced by appropriately selected Editorials, Commentaries, Reviews, and other work that relate to the care of patients with cancer. For more information, see http://jco.ascopubs.org/
 
HMO Research Network The HMO Research Network is a consortium of 19 health care delivery organizations with both defined patient populations and formal, recognized research capabilities. The Network's vision is to be the research partner of choice for those seeking to shape health and health care delivery. For more information, see http://www.hmoresearchnetwork.org
 
Meyers Primary Care Institute The Meyers Primary Care Institute was established in 1996 as a joint venture of Fallon Clinic (now Reliant Medical Group), Fallon Community Health Plan, and the University of Massachusetts Medical School. The Institute's mission is to promote primary care practice through innovative research and educational initiatives. For more information, see http://www.umassmed.edu/meyers/index.aspx
Kaiser Permanente Georgia's Center for Health Research Kaiser Permanente Georgia's Center for Health Research conducts professionally independent, public domain research and disseminates its findings in the scholarly literature and scientific community. For more information, see http://www.kpchr.org/research/public/default.aspx
 
Group Health Research Institute Group Health Research Institute is the research arm of Seattle-based Group Health Cooperative, a consumer-governed, nonprofit health care system. Founded in 1947, Group Health Cooperative coordinates health care and coverage. Group Health Research Institute changed its name from Group Health Center for Health Studies in 2009. Since 1983, the Institute has conducted nonproprietary public-interest research on preventing, diagnosing, and treating major health problems. Government and private research grants provide its main funding. For more information, see http://www.grouphealthresearch.org
 
UW Medicine The UW Medicine health system includes Harborview Medical Center, Northwest Hospital & Medical Center, Valley Medical Center, UW Medical Center, UW Neighborhood Clinics, UW Physicians, UW School of Medicine, and Airlift Northwest. UW Medicine also shares in the ownership and governance of Children's University Medical Group and Seattle Cancer Care Alliance, a partnership among UW Medicine, Fred Hutchinson Cancer Research Center, and Seattle Children's. UW Medicine has major academic and service affiliations with Seattle Children's, Fred Hutchinson Cancer Research Center, the Veteran's Affairs Puget Sound Health Care System in Seattle, and the VA Hospital in Boise, Idaho. The UW School of Medicine is the top public institution for biomedical research in funding received from the National Institutes of Health. For more information about UW Medicine, visit http://uwmedicine.washington.edu.

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abstract - Patient Education and Counseling - Teaching patients how to talk with biomedical providers about their complementary and alternative medicine use

Patient Education and Counseling - Teaching patients how to talk with biomedical providers about their complementary and alternative medicine use

Patients Want Immediate Access to Radiology Test Results, Even if They’re Complicated and Contain Bad News - Wake Forest Baptist Medical Center

Patients Want Immediate Access to Radiology Test Results, Even if They’re Complicated and Contain Bad News - Wake Forest Baptist Medical Center

March 2012 - open access - International Perspectives on Patient Engagement: Results from the 2011 Commonwealth Fund Survey + link to separate blog posting - related issue...Engaging the Already Engaged - 2/2012

International Perspectives on Patient Engagement: Results from the 2011 Commonwealth Fund Survey - The Commonwealth Fund

Key Findings

• To assess the level of patients’ engagement with their regular doctors, the researchers analyzed responses to survey items on whether the doctor spends enough time with patients, explains things in a way that is easy to understand, and encourages questions. Patients in Norway and Sweden were the least likely to be engaged by their regular providers, with only about one of three responding positively to all three questions. At the top end of the range, at least two of three patients in Australia, New Zealand, Switzerland, the U.K., and the U.S. reported positive care interactions.
• In seven of the 11 countries—Australia, Canada, the Netherlands, Norway, Sweden, the U.K., and the U.S.—patients with below-average incomes were significantly less likely to have been engaged by their regular doctor in their care. The U.S. stood out for the widest income-based disparities.
• Survey participants were asked how often the specialist physicians treating them provide opportunities to ask questions about recommended treatments, tell them about their treatment choices, and involve them as much as they would like in decisions about their care. Four-fifths of patients in Switzerland and the U.K. replied “always” or “often” to all three questions, as did two-thirds or more of Dutch, New Zealand, and U.S. respondents. Respondents in France, Germany, Norway, and Sweden were the least likely to report shared decision-making with specialists.
• In all countries, patients reporting positive communication and engagement with their regular doctor were far more likely to rate the quality of care they received in the past year as “excellent” or “very good.” The difference was greatest in the U.S.: 78 percent of patients who said they were engaged in their care rated the quality of their care highly, compared with 43 percent of those who said they were not engaged.
• Engaged patients were also less likely to report a medical, medication, or lab test error in the past two years, and had more positive views of the health system as a whole.  

 

                                              ~~~~~~~~~~~~~~~

 

OVARIAN CANCER and US: the Commonwealth Fund (Harvard ...

Feb 21, 2012

Tuesday, February 21, 2012. the Commonwealth Fund (Harvard): Who Are We Reaching Through the Patient Portal: Engaging the Already Engaged? http://tinyurl.com/6tqadrd. Blogger Sandi Pniauskas at Tuesday, February 21, 2012 ...

ScienceDirect.com - Journal of Pain and Symptom Management - Talking About End-of-Life Preferences With Advanced Cancer Patients: Factors Influencing Feasibility

ScienceDirect.com - Journal of Pain and Symptom Management - Talking About End-of-Life Preferences With Advanced Cancer Patients: Factors Influencing Feasibility

Conclusion

Results indicate that discussing end-of-life preferences in an earlier disease phase, such as in the OU (outpatient) setting, could be preferable but that its accomplishment in this setting may be more difficult, mainly as a result of organizational reasons. This observation could indicate that the system is not yet ready to offer patients such an opportunity and although communication on these sensitive issues cannot be reduced to a procedure, the ELPI can become a useful tool to help physicians in accomplishing this difficult task.

Journal of Cancer Survivorship, abstract: Patient perceptions of communications on the threshold of cancer survivorship: implications for provider responses (small study)

Abstract 

 "......confusion, insecurity, vulnerability, loss, and abandonment....."

Introduction  

Although high quality professional–patient communication is recognized as fundamental to effective cancer care, less attention has been paid to developing an evidence basis for communications surrounding the stage of the cancer journey when primary cancer treatment concludes, management responsibilities shift from oncology specialist services into the generalist care domain, and the patient transitions beyond patienthood and into survivorship.

DNA donor rights affirmed : Nature News & Comment

DNA donor rights affirmed : Nature

NIH committee urges that genome study subjects be told of medically relevant results.

"It is a familiar scenario in genetic research: a subject's DNA is collected for one study, deposited in a database or biobank and then analysed by other researchers for separate studies. But what happens when a later study stumbles on something that could be of significance for the donor, such as an allele for familial hypercholesterolaemia — a treatable genetic disorder that causes progressive atherosclerosis — or some other health-related variation? Do researchers conducting secondary studies and biobanks have a duty to share such revelations with the original research subjects?

They do, when possible, according to a detailed consensus statement from a working group funded by the US National Institutes of Health (NIH) in Bethesda, Maryland, and published this week (S. M. Wolf et al. Gen. Med. http://dx.doi.org/10.1038/gim.2012.23; 2012). The statement's 26 signatories consulted dozens of other researchers and biobank managers over a two-year period. They conclude that biobanks “shoulder significant responsibility” for addressing how to deal with 'incidental findings' — those research results that could have medical consequences for the donors of genetic material.

Genetic testing is increasingly

coming up with 'incidental

findings'.

Genetics researchers are divided on the matter of incidental findings......"

Association for Psychological Science (Harvard): Is modern medicine ill with dehumanization?

Is modern medicine ill with dehumanization?

New article offers a diagnosis, unveils its causes, and prescribes a humanizing cure

"Anyone who has been admitted into a hospital or undergone a procedure, even if cared for in the most appropriate way, can feel as though they were treated like an animal or object," says Harvard University psychologist and physician Omar Sultan Haque. Health care workers enter their professions to help people; research shows that empathic, humane care improves outcomes. Yet dehumanization is endemic. The results can be disastrous: neglect of necessary treatments or prescription of excessive, painful procedures or dangerous drugs.

What are the causes and effects of dehumanization in medicine? And what can be done about it? In Perspectives in Psychological Science, a journal of the Association for Psychological Science, Haque and co-author Adam Waytz at the Kellogg School of Management of Northwestern University synthesize diverse literatures to distinguish when dehumanization is useful from when it is not. Then they recommend "simple, cheap, and effective" changes to "make medical institutions more humane and ethical, as well as efficacious in the service of improved health," says Haque.

The structures of institutions and the psychological demands of providing care can cause professionals to treat patients as less than human. "Deindividuation"—doctors as a sea of white coats; patients as half-naked bodies in smocks, identified by their disease or procedure ("the gallbladder in Room 38")—allows staffs to avoid taking responsibility for each patient. "Impaired patient agency" refers to medical staffs' treatment of patients as incapable of planning their own care, which is both infantilizing and demoralizing. "Dissimilarity"—hierarchies of power, differences of race, class, and gender between staff and patients—have roots outside the hospital. Nevertheless, they cause miscommunication and alienation, even maltreatment. None of these practices serves good medical care.

More complex are dehumanizing practices that may aid care. Diagnosis and treatment might necessitate "mechanization"—breaking the body into organs and systems. Scaling back empathy can diminish staff stress and burnout. Even moral disengagement can be adaptive. From giving a shot to slicing into the flesh to perform surgery, medical care often requires inflicting pain or invading the boundaries of the body in violation of deeply held human taboos. And patients may die after even the best of care. For the professional, guilt could be paralyzing.

Still, the authors argue, dehumanization is useful only in "specific contexts," such as acute care. Waytz says, "Dehumanization's functionality varies wildly across specialities from pediatrics to orthopedic surgery, so future research is needed to determine when dehumanization is most prevalent and most detrimental." In the meantime, the authors offer numerous humanizing fixes: Call patients by name, not numbers; discourage labeling people as diseases; personalize hospital rounds and pre-surgical preparation; eliminate opaque surgical masks; affix photos to CT scans and biopsies. Include patients in care planning. Let them choose their gowns—and design those gowns so they're no so humiliating. Increase physician diversity and hire people with good social skills. And, for med schools, perhaps most radical: Eliminate the "white-coat ceremony" when graduates don the mufti of the elect.

Finally, "we should train medical professionals to think of themselves as mortal – sharing a common humanity and vulnerability with their patients," says Haque. Although dehumanization can be useful, "even functional dehumanization should be viewed like a potent, salutary, but dangerous drug that can have disastrous side-effects" when overprescribed.

Incidentalome: Accidental Gene Findings You May Not Want To Know | CommonHealth

Incidentalome: Accidental Gene Findings You May Not Want To Know | CommonHealth