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Friends and family test: is there a better way to find out views?

Meaningful, qualitative feedback from patients means spending time listening carefully to what they have to say.

The problem with most patient questionnaires is that they ask closed questions, requiring just a yes or no answer. This is also an issue with the government's friends and family test. What's the point of knowing that a patient wouldn't recommend your service to their friends and family if you don't know why?

Spiral Health's 40-bed rehabilitation unit in Blackpool has just been nominated for a Nursing Times award for our approach to patient care, the cornerstone of which is our unique approach to gathering patient feedback. We use an innovative system called Working Together for Change which gathers meaningful, qualitative feedback from patients and then allows them to decide their own priorities for change within our unit.

The system was originally developed as a tool to help people change public services from within. We're working with Helen Sanderson, a personalisation expert, to introduce it for the first time into a hospital setting. It's an eight-part process in which a group of people representing all stakeholders in our hospital community – managers, healthcare assistants, therapists, nurses and patients – gather together to analyse patient feedback and decide on action points. Our staff and patients have loved being involved, and it is interesting to hear feedback on problematic issues from so many different perspectives.

Before we start, we collect patient views by conducting friendly bedside interviews. Each patient is asked to talk to us about two things that are working, two things that are not working and two things that people would like to see if they came back to the unit again. The interviews are more of a chat than a formal process and we work hard to make patients feel at ease. We also remind them that negative feedback is as important as glowing praise. Older generations sometimes don't like to make a fuss, even if something is troubling them.

The issues raised vary hugely. In the beginning, we were surprised to hear that so many people were unhappy with our food. We also learned that some patients needed their exercise regimes to be explained more fully and that others were frustrated that bells weren't being answered on the wards. More recently we've learned that some patients would appreciate more quiet time away from the hubbub of the wards, while others feel there are too few activities to help pass the time.

Almost all the issues raised can be resolved. We've already made significant changes to our menu, personalised our exercise regimes and implemented a policy of zero-tolerance on unanswered bells. Over the past few months, I've also researched options for extra soft mattress toppers and arranged for wi-fi to be available. We have conducted a full run-through of the process twice in the last six months and plan to continue with the same frequency. Eighty per cent of our patients are now being interviewed during their stay and we aim to achieve 100% as soon as possible.

As we are determined to be open and honest about the feedback we receive – negative and positive – we have a display in our reception area that highlights issues raised and what we are working on.

Some people have said we are brave to invite criticism, but we feel strongly that if we are going to be truly patient-centred we must listen hard to them and learn from them. If we were just content to ask tick-box questions of our patients, would the results really be worth the paper they were written on?

Cheryl Swan is clinical director of Spiral Health

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Factors influencing medical decisions for a cognitively impaired family member

Main Category: Public Health
Also Included In: Alzheimer's / Dementia
Article Date: 19 Aug 2013 - 1:00 PDT Current ratings for:
Factors influencing medical decisions for a cognitively impaired family member

Decision-making by a surrogate for a family member who is unable to make medical decisions is more complicated than decision-making by patients themselves, according to a study from the Regenstrief Institute, Indiana University Center for Aging Research and the Charles Warren Fairbanks Center for Medical Ethics of Indiana University Health.

The researchers found that family decision-makers considered the cognitively impaired patient's wishes and interests. But they also took into account their own needs and preferences.

Factors influencing surrogate decision-makers included:

Respect for the patient's input. The patient's prior wishes. Consideration of the patient's best interests. The surrogate's own wishes as a guide. The surrogate's religious and spiritual beliefs. The surrogate's own interests. Family consensus.

"Family members often say that they wish they knew more about their loved one's views on medical care," said Regenstrief Institute investigator Alexia Torke, M.D., associate professor of medicine at the IU School of Medicine and an IU Center for Aging Research scientist. "And whether or not surrogates know what the patient would have wanted had they been able to make the decision for themselves, we learned that family members may feel compelled to substitute what they themselves want, or to paraphrase the Golden Rule: do to others as you would have them do to you.

"Surrogates also consider the feelings and beliefs of other family members," said Dr. Torke, senior author of the study. "The individuals who are making decisions for those who cannot are the survivors - they take into account the fact that they have to live with other family members as and after they make surrogate decisions."

"Making Decisions for Hospitalized Older Adults: Ethical Factors Considered by Family Surrogates" is published in the Summer 2013 issue of the Journal of Clinical Ethics.

An estimated four out of 10 hospitalized adults lack decision-making capacity due to cognitive impairment. When patients are unable to make their own decisions, surrogates often are called upon. Dr. Torke notes that the need for surrogate decision-making is growing as life-sustaining medical technology becomes more available, the population ages, and the prevalence of diseases such as Alzheimer's and other forms of dementia increases.

In the study, the investigators interviewed 35 surrogates with a recent decision-making experience for a hospital patient age 65 or older. The group was almost evenly split between white and African-American surrogates. Eighty percent of the respondents were female; 60 percent were the daughters of the cognitively impaired patient.

"Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences as well as those of the patient for whom they are acting, standard ethical models of surrogate decision-making [in the academic literature] must account for these additional considerations," the paper noted. "Surrogates' desire for more information about patient preferences suggests a need for greater advance care planning."

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
Visit our public health section for the latest news on this subject.

IU School of Medicine student Jenna Fritsch, B.S., is first author of the paper. Co-authors, in addition to Dr. Torke, are Sandra Petronio, Ph.D., of the Department of Communication Studies in the IU School of Liberal Arts at Indiana University-Purdue University Indianapolis; and Paul R. Helft, M.D., of the Department of Medicine at the IU School of Medicine and the IU Melvin and Bren Simon Cancer Center. Drs. Torke, Petronio and Helft are members of the Charles Warren Fairbanks Center for Medical Ethics at IU Health, of which Dr. Helft serves as the director.

Dr. Torke was supported by an award [K23AG031323] from the National Institute on Aging at the National Institutes of Health. Fritch was supported by the Medical Student Training in Aging Research program, administered by the American Federation for Aging Research and the National Institute on Aging. The content of the study is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Indiana University

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Family cancer risk may be wider than relative's specific type

Featured Article
Academic Journal
Main Category: Cancer / Oncology
Also Included In: Genetics
Article Date: 25 Jul 2013 - 0:00 PDT Current ratings for:
Family cancer risk may be wider than relative's specific type

People with a family history of cancer have an increased risk of developing not only the same cancer, but also a different form of the disease, according to a study published in the journal Annals of Oncology.

Researchers from Italy, Switzerland and France analyzed 12,000 cases of cancer occurring in 13 different sites of the body between 1991 and 2009. These were compared with 11,000 people without cancer.

Information on any cancer in the family, particularly in first-degree relatives (directly related), was collected in both groups. Other details collected included:

Age of diagnosisBody shapeLifestyle habits, including smoking and alcohol intakeSociodemographic characteristicsDietPersonal medical historyUse of oral contraceptives and hormone replacement therapy

The researchers say that the results of the study confirmed links already known, like the increased risk of developing the same cancer as a close relative.

But the researchers also say that the most interesting results of the study revealed that family members who had relatives with a specific form of cancer were also at higher risk of developing a different form of the disease.

The results revealed:

Family members who had a first-degree relative with cancer of the larynx were 3.3 times more likely to develop oral and pharyngeal cancerFamily members who had first-degree relative with with oral or pharyngeal cancer were 4 times more likely to develop oesophageal cancer Female family members who had a first-degree relative who suffered from breast cancer were 2.3 times more likely to develop ovarian cancerFamily members who had a first-degree relative who had bladder cancer were 3.4 times more likely to develop prostate cancer.

Dr. Eva Negri, head of the Laboratory of Epidemiologic Methods at the Mario Negri Institute for Pharmacological Research, Milan, Italy, says of the results:

"Besides confirming and quantifying the well-known excess risks of people developing the same cancer as their first-degree relative, we have identified increased risks for developing a number of different cancers."

"We have also found that if a patient was diagnosed with certain cancers when they were younger than 60, the risks of a discordant cancer developing in family members were greater."

Dr. Negri adds that because this study analyzed a large number of people, this revealed links in some rare forms of cancer.

She adds:

"For some rare cancers, a weak association with a different, common cancer can, on a population level, reveal a higher attributable risk than a strong association with the risk of developing the same cancer. For example, for ovarian cancer we found that a family history of breast cancer had a stronger attributable risk of ovarian cancer than the far rarer, albeit stronger, association with family history of ovarian cancer."

The researchers say that some of the results of this study could be due to shared habits among family members, such as smoking or drinking. But she adds that the results show there are many cancer syndromes appearing among close relatives that show how the presence of genetic factors could influence the development of cancer in multiple sites of the body.

Dr Negri says:

"These findings may help researchers and clinicians to focus on the identification of additional genetic causes of selected cancers and on optimizing screening and diagnosis, particularly in people with a family history of cancer at a young age."

Written by Honor Whiteman

Copyright: Medical News Today
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Family history of cancer and the risk of cancer: a network of case–control studies, published in the journal Annals of Oncology, July 25, 2013

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Whiteman, Honor. "Family cancer risk may be wider than relative's specific type." Medical News Today. MediLexicon, Intl., 25 Jul. 2013. Web.
26 Jul. 2013. APA

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