Think health
No. 10 – NOVEMBER 2016
THE ERA OF
INFORMED PATIENTS / TAKING POWER / CYBERCHONDRIA / SELF-MEDICATION
REPORT Breathing life into death CYNTHIA FLEURY Caring with humanity BURNOUT When parents just can’t take it anymore Published by the CHUV www.invivomagazine.com IN EXTENSO ONE MINUTE IN THE BLOODSTREAM
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IN VIVO / NUMBER 10 / NOVEMBER 2016
CONTENTS
FOCUS
11 / RESEARCH Breathing life into death Science and medicine are increasingly interested in the end of life. BY PATRICIA MICHAUD AND STEVE RIESEN
MENS SANA
20 / INTERVIEW Cynthia Fleury: “Without humanity, caring for patients becomes mere repair work” BY BÉATRICE SCHAAD
24 / DECODING Today’s well-informed patients BY JULIE ZAUGG
CORPORE SANO
07 / HEALTH VALLEY Artificial intelligence with Sophia Genetics
CURSUS
INNOVATION
Organ transplants from pigs
43 / COMMENTARY
BY YANN BERNARDINELLI
Research, a chosen path
32 / TABOO
45 / TANDEM
When parents just can’t take it anymore
Patrick Schoettker and Josep Solà
BY GENEVIÈVE RUIZ
36 / IN THE LENS The bottle matters BY JULIEN CALLIGARO
NEW ARTICLES ON WWW.INVIVOMAGAZINE.COM COMING DURING THE WINTER
Every year at the start of November, Mexicans paint masks on their faces to celebrate the dead. During the “Día de Muertos”, they visit cemeteries, eat over tombstones, dance, and sing in their disguises. Funerary rites, which take place before and after the death of a loved one, have always been a component of a community’s religion, culture, and relationship to death.
HUGO BORGES / NOTIMEX / NEWSCOM
29 /
IN SITU
CONTRIBUTORS
PATRICIA MICHAUD
STEVE RIESEN
JADE ALBASINI
Freelancing from Bern, Patricia has been writing articles for a number of publications in French-speaking Switzerland for many years. For “In Vivo”, she delved into a subject that is more alive than ever: death (p. 11).
A graduate of the Academy of Journalism and Media at the University of Neuchâtel, Steve covered the Health Valley pages (p. 4 to 10) for this issue of “In Vivo”. He was also a contributor on the special report on death (p. 11).
Jade is a freelance journalist who writes for numerous Swiss and foreign magazines. For this issue, she interviewed the two-person team of Patrick Schoettker and Josep Solà (p. 44).
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Editorial
PUTTING AN END TO DEATH
PATRICK DUTOIT
BÉATRICE SCHAAD Chief editor
* “BEING MORTAL”, METROPOLITAN BOOKS, 2014. ** “DYING”, LE SAVOIR SUISSE, 2014.
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Covering mirrors in remembrance of those who have left us rather than getting distracted by our own image. Not letting any grief show so that our loved ones can leave this world with total peace of mind. Not touching the body of the deceased for three and a half days to let the conscience leave the body peacefully. Humans have always been careful about anticipating death and considering it an integral part of life. That gave it all balance. But if we take a good look at recent history, a trend has been gaining ground to push in the opposite direction, with the emergence of cryonics, transhumanism and the frantic fight against ageing. These are all examples of the ways some are trying to put an end to death. As Atul Gawande*, a professor at Harvard T.H. Chan School of Public Health in Boston, puts it, “modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history.” The downside of this pretty picture is less encouraging. He believes that these rapid scientific advances have led some to believe that ageing and death are mere clinical conditions that can be treated. But, he adds, “we in the medical world have proved alarmingly unprepared for it.” Medical school prepares students to repair the body, but does it teach them how to get through its passing? Definitely not, is Dr Gawande’s response, pointing to Tolstoy’s Ivan Ilyich, a patient on his death bed surrounded by doctors who are trained to save him and stubbornly deny that he is dying. Ilyich is left without empathy or understanding in his last moments of life. Nowadays, with the developments in medicine, “we put Ivan Ilyich out of our heads,” the American surgeon says. Or, as Loïc Payrard sees it (see p. 12), “still too many health care providers are incapable of talking about death because they are forced to deal with their own powerlessness.” This student from the Faculty of Biology and Medicine at the University of Lausanne is vice president of Doctors & Death, an organisation working to help future physicians grapple with their emotions and to come up with better ways for doctors and patients to communicate with each other. Aren’t they the ones who are first to suffer from these attitudes that ignore the possibility that we may be finite? Some health professionals are currently working to reintegrate death as an integral part of health care, to think about it, even when it seems unthinkable. One of them is Professor Borasio** (interview p. 13), chief of the Palliative Care and Support Service, who also advocates the introduction of advance directives on the subject. Others are working to implement patient care plans as a basic element in treatment. In trying to defeat death, we are also depriving patients of their final moments of life. ⁄
Thanks to its university hospitals, research centres and numerous start-ups specialising in health care, the Lake Geneva region is a leader in the field of medical innovation. Because of this unique know-how, it has been given the nickname “Health Valley”. In each “In Vivo” issue, this section starts with a depiction of the region. This map was designed as a digital collage by Jérémie Mercier.
IN SITU
HEALTH VALLEY
JÉRÉMIE MERCIER
Panorama of the latest innovations.
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GENEVA
P. 06
Five surgeons were brought in to perform a triple swap kidney transplant.
EYSINS
P. 07
The American giant Becton Dickinson has set up its European headquarters in the Canton of Vaud.
SAINT-SULPICE
P. 08
The artificial intelligence developed by Sophia Genetics promises to improve cancer diagnosis and treatments.
LAUSANNE
P. 09
A digital map can now be used to locate Health Valley companies.
SION
P. 06
Friedhelm Hummel will be the new research chair in clinical neural engineering at EPFL.
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IN SITU
HEALTH VALLEY
START-UP
“There are not enough medical students”
FUND RAISING
Chondronest, operating out of the PhytoArk technology park in Sion, develops injectable paste that can solidify or repair human cartilage. The start-up has recently wrapped up its first financing round.
STETHOSCOPE
Pierre Storkov, a former medical student from the University of Geneva, has founded the start-up StethoMD to develop a smartphone-enabled stethoscope. The device makes it easier to run medical analyses and share data. His idea earned him first prize at Arkathon Hacking Health Valais 2016.
ROBOT
The start-up Dosepharma, founded by a Geneva-based pharmacist, uses a Korean robot to deliver the right dosage of medicine. The machine wraps the drugs into a roll, with each detachable bag containing the equivalent of one daily dose. The system offers more traceable, hygienic and reliable medical doses to about 15 partner pharmacies. Dosepharma took home an award at the Génération Entrepreneur competition in May 2016.
PIERRE-ALEXANDRE BART IN AN INTERVIEW WITH “24 HEURES” IN AUGUST 2016, THE NEW DIRECTOR OF THE SCHOOL OF MEDICINE AT THE UNIVERSITY OF LAUSANNE EXPRESSED HIS IDEAS ABOUT INCREASING ENROLMENT. HIS PLANS INCLUDE CROSSOVER PROGRAMMES ALLOWING STUDENTS TO FOLLOW ON FROM AN UNDERGRADUATE DEGREE IN BIOLOGY TOWARDS A MASTER’S IN MEDICINE.
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In millions of euros, the investment landed by the Swiss company Spineart from the European investment firm Gimv. Spineart is a pioneer in its field, developing medical devices that simplify surgical procedures.
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BRAIN EPFL has set up a research chair in clinical neural engineering in Sion, to be led by Friedhelm Hummel. The 46-year old German neurology expert is known worldwide for his work in post-stroke rehabilitation. Dr Hummel has developed a technique using electrical and magnetic stimulation of the brain, which improves recovery for stroke victims. With a team of about 10 researchers, the research chair was co-financed by EPFL and the foundation Defitech.
Triple swap kidney transplant
THE APPLICATION
CELLS
QGel, a start-up based at the EPFL Innovation Park, synthetically produced the substance that bonds cells to each other, called the extracellular matrix. After several years of research, an industrial manufacturing process has been approved for large pharmaceutical groups.
A leading figure in neural engineering comes to Sion
EMERGENCY SERVICES “Treat your patience” is the slogan for the app developed by the Lausanne University Hospital. The idea is to cut waiting times at hospital emergency rooms. The free app can be installed on Apple and Android smartphones and signals the closest emergency unit and its occupancy rate, with updates every five minutes.
OPERATION On 13 July 2016, kidney transplants were performed on three donors and three recipients at the same time at the Geneva University Hospitals. This was the second time this type of kidney operation has taken place in Switzerland. Going beyond the pairing of one donor for one receiver broadens the possibilities when a relative offers to donate an organ but is not compatible with the patient. Five surgeons – including one borrowed from the Lausanne University Hospital – took on the challenge, which lasted from 8.00 a.m. to 9.00 p.m. and involved some heavy logistics.
IN SITU
HEALTH VALLEY
Medtech and biotech resisting Switzerland’s strong currency The life sciences sector continues to grow – and draw in investment and funding – despite the strength of the Swiss franc.
FERRING AG, BECTON DICKINSON
INNOVATION Switzerland’s economy took a harsh blow when the Swiss National Bank decided to unpeg its currency from the euro in early 2015. The aftershocks are gradually dying down, but a number of industries are struggling to scrape themselves back up. So in this bleak landscape, how are the country’s biotech and medtech companies holding up? The first positive sign is that Switzerland continues to attract foreign firms. The U.S. medical equipment manufacturer Becton Dickinson has recently opened its European headquarters in Eysins, near Nyon, and plans to build a factory there. And the Japanese ophthalmic pharmaceutical company Santen opened an office in Geneva in 2015. Meanwhile, other groups are boosting their presence in Health Valley. “Ferring, located in Saint-Prex, will expand from 600 to 1,000 employees, and Celgene, in the Canton of Neuchâtel, will increase its staff from 800 to 1,000 people,” says Claude Joris, the Secretary General of BioAlps, the life sciences cluster in French-speaking Switzerland. “Even Merck Serono continues to hire more people in Switzerland.”
Rising profits “Swiss biotech companies generated 5.1 billion Swiss francs in revenue last year. That’s 200 million Swiss francs more than in 2014,” says Jürg Zürcher, a biotech and medtech expert at Ernst & Young. And 759 more people have been given jobs over the past two years. “This performance is driven by large companies – such as Actelion, Santhera, Evolva and Basilea – which have posted strong sales and recently received approval for several drugs,” the analyst says. The region remains a top destination for funding. In 2015, Swiss biotech companies secured a record 907 million Swiss francs. Several firms have attracted investment from major foreign groups. GlaxoSmithKline ac7
TEXTE JULIE ZAUGG
ABOVE: JÜRG ZÜRCHER, FERRINGS' HEADQUARTERS IN SAINT-PREX AND SYRINGES DEVELOPED BY BECTON DICKINSON
quired the Zurich-based GlycoVaxyn; Pfizer bought a stake in another company from Zurich, Redvax, while Servier invested in GeNeuro, a biopharmaceutical firm based in Geneva. Crispr Therapeutics, which operates out of Basel, has forged a $335 million partnership with Bayer. Global presence Why is this industry thriving? “Most biotech companies don’t spend much Switzerland,” Zürcher says. “They manufacture their drugs abroad and outsource clinical trials to contractors located outside the country.” These external firms are often located within Europe, meaning their Swiss clients can take advantage of the weak euro. Biotech companies generate revenue from the sale of drugs worldwide. “It is important to remember that the Swiss franc has risen significantly against the euro, but not so much against the dollar or Asian currencies, which account for most of their revenue,” Mr Joris says. But there’s an exception. “Medical device suppliers, especially the many implant and prosthetics manufacturers operating in the Jura region, have suffered more from the strong Swiss franc, as most of their production takes place in Switzerland,” the head of BioAlps says. Some businesses have watched their margins erode by 10% and been forced to raise their prices accordingly. “That has weakened their position against European and Asian competitors.” With its location in the heart of Europe, supportive tax schemes, flexible labour laws, business incubators – such as the Campus Biotech in Geneva and the Wyss Center in Zurich – and dominance in life science research, Switzerland remains a favourite destination for biotech firms. “Most of the groups that choose to come here stay,” Mr Zürcher says. “They’re in it for the long term.” ⁄
IN SITU
HEALTH VALLEY
3 QUESTIONS FOR
JURGI CAMBLONG
SOPHIA GENETICS HAS COME OUT WITH ARTIFICIAL INTELLIGENCE TECHNOLOGY THAT CAN DIAGNOSE TUMOURS AT THE MOLECULAR LEVEL.
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HOW DOES SOPHIA, THIS NEW ARTIFICIAL INTELLIGENCE, WORK?
It uses the genomic data of patients from 160 hospitals in 30 countries, which we’ve been compiling over the past few years. We’ve taken the data collected to perfect our technology until it worked like artificial intelligence. It’s a process developed over the long term. At first, the machine uses a small amount of data, which produces an unreliable diagnosis. But by monitoring the machine and feeding it more data, its analysis becomes more accurate. We now attain a predictive score that matches the results obtained by experts 98% of the time in assessing the risk of developing breast cancer.
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DISCOVERY Researchers from EPFL and the start-up Amazentis have proved the anti-ageing potential of the pomegranate. The fruit contains a chemical that extends the lifespan of muscles in individuals with the right gut bacteria to convert it into urolithin A. But urolithin levels vary, and this natural process doesn’t even take place at all in some people. So Amazentis is developing urolithin food supplements for those who don’t produce it naturally. The initial findings from tests conducted on worms and rodents were published in the journal Nature Medicine.
WHAT ARE THE POTENTIAL APPLICATIONS FOR THIS TECHNOLOGY?
Eventually, we could take the diagnosis a step further by suggesting the most appropriate treatment. With enough data on the type of tumour, the treatment prescribed and its success rate, artificial intelligence could actually deduce the chances of recovery using a given drug.
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Pomegranate to counter muscle ageing
COULD ARTIFICIAL INTELLIGENCE ONE DAY REPLACE DIAGNOSIS BY DOCTORS?
No, that won’t happen, and we don’t want it to. The expert should always be the one taking the final decision. The relationship with the patient and the doctor’s intuition remains vital. Our technology can be used to make a faster, more informed decision. It also relieves physicians of certain duties, leaving more time for contact with patients. /
Jurgi Camblong is the CEO and co-founder of Sophia Genetics, based in Saint-Sulpice.
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THE DEVICE
MICROBOT No motor needed to get around! These micro-structures are “guided” by magnetic fields, change shape when warm and swim through the human body with flagella, like some types of bacteria. Researchers from the Swiss Federal Institutes of Technology in Lausanne (EPFL) and Zurich (EPFZ) have developed these micro-robots to perform specific tasks, such as delivering drugs at pinpointed sites in the body or unclogging arteries.
S
HEALTH VALLEY
debiopharm inartis challenge
G E
IN SITU
masschallenge
The purpose of this contest is to inspire original ideas for health care to improve the physical and moral comfort of patients. Four finalists were selected in 2016, featuring projects such as a transparent surgical mask and multi-functional screen positioned above the patient’s hospital bed. They each received 5,000 Swiss francs to bolster their project. And the big winner will take home a prize of 25,000 Swiss francs to bring their project to completion.
C
HALL
E
N
The U.S.-based A growing start-up accelerator has set its sights on number of the shores of Lake events, from Geneva for its first hackathons experience in to start-up continental Europe. competitions, About 70 of the 450 projects competing were selected to develop their business as offer part of the four-month programme. A number researchers of these start-ups specialise in health care in Frenchin Switzerland, including Pristem, Intento, speaking Sterilux and GaitUp. In addition to free office Switzerland space, they will have access to professional challenges and coaching and a network of internatioopportunities nal contacts. The to develop swisscom start-up challenge top 26 start-ups will their projects. Five Swiss start-ups will be share the grand heading to Silicon Valley to take prize of 1 million part in a week-long mentoring Swiss francs. programme. Two of the winners of the 2016 challenge represent the health care sector in French-speaking Switzerland. arkathon hacking health valais NanoLive has developed technology used to study living For the second time this year in Sierre, The Ark and Swiss Digital cells with a microscope without Health have launched their challenge to create and develop damaging them, while Xsensio innovative digital health solutions in the space of a weekend. has designed a wearable kit that The project MeasureMe won the special jury prize. Their tool is analyses biochemical informaused to estimate a person’s height and weight based on a photo. tion on the skin’s surface. A third Arkathon Hacking Health Valais is already confirmed for 2017.
Overview.
A digital map for Health Valley
INARTIS
EMPLOYMENT Inartis Foundation has developed a digital map of the organisations in Health Valley, along with job offers and events, all focusing on medical innovation. The map reflects the strength of the health industry in French-speaking Switzerland, showing 962 companies, 29 research centres and 58 innovation support services. Inartis presented its new platform on 15 September 2016 before Health Valley leaders. The foundation hopes this map will encourage them to take a collaborative, open-minded approach in their innovation projects. www.healthvalley.ch
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IN SITU
HEALTH VALLEY
BENOÎT DUBUIS Director of the Campus Biotech site and Chairman of BioAlps
Health Valley: continuity through innovation
In a fitting end to the investment campaign, Merck Serono’s entrepreneurship programme has also given rise to Fondation EspeRare, a non-profit organisation dedicated to developing new treatment opportunities for patients with rare diseases. After receiving an initial donation of €2.8 million and the rights to a molecule for the treatment of Duchenne muscular dystrophy, EspeRare now has a key role in fashioning a new collaborative model involving experts from a range of both public and private organisations.
Founding seven spin-offs In addition, numerous Merck Serono Geneva It seems the past few years have been a real-life R&D projects have founded new companies example of Schumpeter’s theory of “creative and foundations. Out of the seven projects that destruction”. A new era has begun, and it is our resulted in new facilities, three are involved in hope that these seven young companies spun-off by developing medicines, namely Asceneuron, Merck Serono will recreate a multinational industrial Prexton Therapeutics, and Calypso Biotech. The group, thereby helping to ensure that “Health Valley” first two start-ups work with neurodegenerative remains a fitting sobriquet for our region. ⁄ diseases, which was originally Serono’s primary area of focus. Rebif, a medicine used to treat multiple sclerosis, is one of their notable success stories. Medications from Asceneuron and Prexton, while not quite as successful, target tauopathies, Alzheimer’s and several other neurodegenerative diseases, including Parkinson’s disease. Calypso Biotech studies chronic inflammatory bowel diseases with an emphasis FOR MORE INFORMATION on changes in the composition of our intestinal www.bioalps.org platform for life sciences microbiome and how these shifts relate to our intheWestern Switzerland immune system. 10
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The sale or closure of a site is never easy for a region because it removes a link from its innovation and production chain. Among the setbacks Health Valley has experienced, the closure of Merck Serono’s headquarters and its subsequent move to Germany in 2012 was probably the most emblematic loss of the last few years. The company’s move was a significant source of doubt and stress and weighed heavily on the region’s morale and growth. However, the publication of Health Valley’s 2016-2017 map in mid-September was cause for considerable optimism in the region and serves as a reminder that the German pharmaceutical company continues to grow at its Aubonne and Corsier-sur-Vevey sites, which now employ over 1,200 people.
Expanding beyond the drugs sector Three IT companies were also spurred into action by Merck Serono’s move from Geneva. They include Quartz Bio, which offers biomarker data analysis services (a key component in the development of personalised medicine); TQM Insight, which is specialised in IT governance; and Ondaco, which now manages IT assistance services and application development at all Merck Serono sites in Switzerland.
FOCUS
DEATH
RESEARCH
BREATHING LIFE INTO DEATH / Death, a phenomenon long unexplored, and the fear of it are drawing interest from medicine and science.
/ BY
PATRICIA MICHAUD AND STEVE RIESEN
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T
FOCUS
DEATH
wo of the most widely read popular science collections in Switzerland—Que sais-je? and Le savoir suisse—have recently published books on death. Just a coincidence? Ordinary people have always been curious about it, but now science also wants to understand death better. Let’s face it, death has long been taboo and has not been given much attention. “We have gained extensive, precise knowledge about the beginning of life, but death has remained relatively unexplored,” says Gian Domenico Borasio, chief of the Palliative Care Service at Lausanne University Hospital (CHUV), in his book Mourir. This growing interest comes at a time when the lines defining the “end of life” are being blurred. “The concept of brain death has brought new possibilities—primarily organ transplants—and changed the way we see death,” says Marc-Antoine Berthod, president of the Society of Thanatological Studies in French-speaking Switzerland. “People have long been fascinated with what happens after death,” says Alexandrine Schniewind, professor of philosophy at the University of Lausanne (UNIL) and author of the book La Mort. “And for centuries the Church has taken an ambiguous stance on the afterlife. The idea is both scary, when it comes to thinking about purgatory and hell, and comforting, with promises of heaven for those with the faith.” Religion’s weaker control over society and today’s longer life
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Palliative medicine is addressing those wishes by offering care that does not try to extend life but improve its quality. Palliative care has grown with the ageing population. The Swiss Federal Statistical Office (SFSO) estimates that the percentage of people age 65 and over in Switzerland will rise from 17% in 2010 to 28% by 2060. That means the need for palliative care will increase accordingly. To meet this demographic challenge, a chair in geriatric palliative care—the first in the world—was set up this year in Lausanne.
“We’ve never been so distant from the dying,” Schniewind notes. “Until the beginning of the last century, people ended their lives at home, surrounded by their family.” Now, the trend is moving in the opposite direction. In 2009, 41% of Swiss people died WHAT IS DEATH? in hospital, versus 40% in homes Death became more clearly for the elderly and 20% elsewhere, defined from a scientific point according to the SFSO. “We’ve delof view in the 1960s, mainly due to progress in organ transplantation. egated end-of-life support to health In Switzerland, the Swiss Academy care providers, without realising of Medical Sciences set out its initial that every one of us is (or will be) directives in 1969, which have affected by this issue.” since been revised several times. Today, the document entitled “Directives for the definition and diagnosis of death for organ transplantation” stipulates that an individual is dead after sustaining “irreversible cessation of the entire function of the brain, including the brain stem”. But this definition could be adjusted as practices evolve (see p. 15).
SUPPORTING FUTURE DOCTORS AN ORGANISATION THAT KEEPS THEM INFORMED
Having noted the lack of information about death in the medical community, a group of UNIL students founded the organisation Doctors and Death five years ago. What got them thinking was the “cold, mechanical” aspect of dissection labs. “Most medical students who come to the anatomy room face death for the first time,” says Loïc Payrard, vice-president of the Lausanne branch. 12
expectancy have displaced the issue. Now, both believers and non-believers express their hopes of having a “good death”.
These days more than ever, the topic of death is very much alive. And this affects medical professionals, as they are not always adequately prepared to face it.
“Medical school is very competitive, and showing emotion when faced with death is often perceived as a weakness. That creates a serious ambivalence. On one side, we want practitioners to be empathetic, while on the other they are forced to be cold.” The Doctors and Death initiative, which began in the Canton of Vaud but has since spread throughout the country, wants to take away some of the guilt experienced by students who feel emotion when dealing with death. The organisation offers them a space to talk about it—for example through a monitoring unit run by experienced professors—and get information. By extension, the organisation also aims to develop better ways for doctors and patients to communicate with each other about
FOCUS
DEATH
“SWITZERLAND CAN DO BETTER IN TERMS OF PALLIATIVE CARE” Gian Domenico Borasio feels that general practitioners are the pillars in end-of-life support. INTERVIEW BY
A PATRICIA MICHAUD
could theoretically stay at home, as long as general practitioners are better informed and trained properly. In-home care also needs to develop more. These days, 75% of Swiss people say they would like to die at home, but nearly 80% of deaths occur in hospital or specialised homes.
ssisted suicide and the concept of medical futility have become hotly debated issues. Amid this turbulence, palliative care has gained greater recognition in the past few years. But Switzerland still has a way to go. One solution is to give family doctors a more central role in patient care. iv
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Switzerland 15th in the quality of end-of-life care. iv You
believe that the future of palliative care should not be the responsibility of specialised care units but of family doctors... gdb Yes, general practitioners are the pillars of palliative medicine. Approximately 80% of people could be cared for by their family doctor at the end of their life, with the help of health care providers and trained volunteers. Only around 20% of deaths require care by experts in palliative medicine. Most patients
GIAN DOMENICO BORASIO IS CHIEF OF THE PALLIATIVE CARE AND SUPPORT SERVICE AT CHUV.
ERIC DÉROZE
Where does Switzerland stand in terms of palliative care? gdb We’ve accomplished several major steps forward recently, including the acceptance of a national strategy for palliative care in 2009. This strategy has boosted the ad hoc structures available in the country. Other important advances have been made too. Palliative medicine has been a compulsory area of study in medical school since 2012 and became an official sub-specialty, like geriatrics, in 2016. But Switzerland can do better. In its international survey in 2015, “The Economist” ranked
What can patients do to make sure their wishes are respected— for example dying at home—if they become unfit to make decisions for themselves? gdb The best way is to plan ahead. In concrete terms, we can prepare for our death in the same way we prepare for other aspects in life. In Switzerland, the new law on adult protection passed in 2013 entitles people to designate a therapy representative and predefine guidelines, such as instructions on which treatments they would like or refuse in an end-of-life situation. These guidelines should always be prepared with the help of their GP. iv
FOCUS
DEATH
death. “I still know too many health care providers who are incapable of talking about the subject, probably because this forces them to deal with their own powerlessness.” However “the fact that we cannot avoid death does not invalidate the importance of what we do, part of which means being honest with our patients. In any case, they have access to loads of information with the development of new technology.”
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THE POINT OF PALLIATIVE CARE DYING IN PEACE WHILE IN HOSPITAL
responsibility of a team specialised in palliative care,” Tamchès says. The ageing population has also brought new challenges. “This means that we have to plan for situations involving elderly people who will die of complications linked directly to dementia,” says Eve Rubli Truchard. The world’s first chair in geriatric palliative medicine was set up on 1 May 2016. It is led jointly by the geriatrics department and Ralf Jox, a neurologist, ethicist and palliative care expert. “We often intervene when it’s too late, at a stage when patients can no longer express how they want to experience this final phase. Communication with loved ones is vital in these cases. We have to guide them in their decisions by suggesting consistent solutions.”
Future doctors are more aware about the issues involved in death, and that’s a step in the right direction. In their third year of undergraduate studies, medical students from the Faculty of Biology and Medicine (FBM) are now required to spend two days as observers at a palliative care unit. For doctors’ assistants, CHUV offers special training on death and palliative medicine depending on the needs of the different departments.
INCREASING LIFE EXPECTANCY In 1960, 19.8% of men died after the age of 80. Today, 51.2% of men live to that age. These numbers confirm a strong demographic trend—the Swiss are living longer. Switzerland has one of the highest life expectancies in the world, just behind Iceland for men (85 years) and after Japan for women (80.7 years).
Gian Domenico Borasio is the only full professor of palliative medicine in Switzerland. For several years, he has been working with his team to bring about a change in attitude about the last phase of patients’ lives. Every year the hospital organises a half-day event focusing on the issue of medical futility. “Many institutions completely deny that any problem exists,” Borasio says. “There’s still a tradition of trying to extend a patient’s life at all costs.”
32% 48%
The aim of palliative care is not to extend life but to improve the quality of life. “It’s crucial that we shift towards a culture of listening to patients to understand how they want to live the last moments of their life,” says Emmanuel Tamchès, head of the mobile palliative care team at CHUV. “Health care staff must communicate with compassion and respect the different values of patients.”
71%
Historically, palliative care is primarily given to cancer patients but is increasingly considered an option in other end-of-life situations. To address the needs of its departments, CHUV has developed a programme that identifies beds with patients in need of palliative care. “For now the project has ten beds. Patients can stay in their original unit but come under the medical
19%
14
WOMEN
69%
65% 80 YEARS AND MORE 65–79 YEARS 41% 40–64 YEARS UNDER 40 YEARS
36%
20%
22% 19% 12%
8%
9%
10%
2%
2%
3%
4%
2015
2010
2000
1980
8% 1960
FOCUS
3
DEATH
bers and, if they agree, we decide to unplug the machines, and cardiac arrest ensues.”
DONATING A DEAD HEART AN AMBITIOUS ETHICAL CHALLENGE
32% Death in the hospital environment is intimately linked with the sensitive issue of organ donations. 48% And that raises a fundamental point. What are the conditions that determine when a patient has actu65% ally died? Death has always 69% been defined as a com71% plete cessation of vital functions. But a new concept emerged in the 1970s: brain death. Death was now diagnosed based on the interruption of brain functions, but the heart kept beating. “Most transplants 41% involve organs from donors who are brain dead,” says Manuel Pascual, chief of service at the transplantation centre at CHUV. 36%
This new paradigm could increase the number of dead donors identified in intensive care units by about 20%. But that brings a whole new set of challenges. So hospitals have implemented ethical safeguards.WOMEN “The decision to switch off the machines must be completely independent from the possibility of organ donation and transplantation. Neither the fam-
80 YEARS AND MORE 65–79 YEARS
“Palliative care can extend a patient’s life” TRUE Even though the objective of UNDER palliative medicine is not to prolong life 40 YEARS but to improve its quality, studies have clearly shown that administering palliative care early can also significantly extend the life of patients. 40–64 YEARS
But due to the lack of donors, in both Switzerland 22% and abroad, practices are20% changing. The university 19% hospitals in Zurich, Geneva and Lausanne now per19% form “dead heart” transplants. “This means that do12% nors have suffered extensive, irreversible damage to 10% 9% 8% the brain but do not meet all the criteria for brain 8% 4% 3% 2%“We talk death,” Dr Pascual 2% explains. to family mem2015
2010
2000
1980
“Health care personnel can help hospital or hospice patients die” FALSE In some cantons, such as Vaud and Geneva, assisted suicide is authorised in the hospital if, for example, the patient cannot return to his or her home. However, health care personnel are not authorised to help patients die. Patients must use an external association, such as EXIT.
1960
“In Switzerland, people are free to choose where they want to die” TRUE In Switzerland, 80% of people die in hospital or specialised homes. If someone wants to die at home, they can, in theory, but as long as their loved ones are prepared and able to handle most of the care needed.
20% 28%
MEN
42% 49%
80 YEARS AND MORE
51%
40%
65–79 YEARS
44%
35% 31%
31%
28% 21% 18% 12%
1960
7% 1980
15
5% 2000
17%
15%
3%
3%
2010
2015
INFOGRAPHIES: SÉBASTIEN FOURTOUILL, SOURCES: OFS
40–64 YEARS UNDER 40 YEARS
TRUE / FALSE
“If a person is brain dead, his or her organs are automatically donated” FALSE Organ donation is not allowed unless the donor has given prior consent. If there is no document stating the deceased person’s refusal or consent, his or her organs can be donated upon consent of the family. “If a person has died outside of the hospital several hours ago, his or her organs can still be donated” FALSE When organs are deprived of oxygen within the body, they cannot be donated after 30 to 60 minutes have passed. Ischemia tolerance—the time an organ can survive without oxygen—varies from one organ to another.
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ily or health care staff should feel any pressure whatsoever.” To make sure that these two procedures remain clearly separate, “we’ve held dozens of internal information meetings,” says Philippe Eckert, chief of the Service of Adult Intensive Medicine at CHUV. At the Lausanne University Hospital, approximately 200 patients die every year because their treatment is withdrawn or withheld, thus causing their death. But Dr Eckert estimates that “annually only about 10 of these cases will lead to a dead heart transplant.” Dead heart transplants also involve a logistical challenge. This method gives surgeons less than one hour to remove the organ. As blood flow has stopped, the entire surgical team has to act fast and be perfectly coordinated. Eckert agrees, “Guaranteeing the quality of organs while respecting the dead and their loved ones turns into a race against the clock.” The complexity of the process is in fact “one of the reasons
WHAT THE SWISS DIE FROM Cardio-vascular disease is the main cause of death in both men and women in Switzerland. Malignant tumours and accidents are the other two primary causes of death in the country. 0
5,000
WOMEN
MEN 16
why we have long refused to perform dead heart transplants,” Pascual says.
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NEAR-DEATH EXPERIENCES A PHENOMENON AT THE HEART OF NEUROSCIENCE
Advances in neuroscience have brought new insight into near-death experiences (NDEs). These phenomena have been described since ancient times and have continued to feed our imagination, often associated with mysticism or charlatanism. NDEs were thrust into the contemporary spotlight in 1975, when the physician and psychiatrist Raymond Moody published his famous report Life After Life. His book draws on a collection of cases to identify the common elements most often described by people who have been through an NDE, including a white light at the end of a tunnel, encountering deceased loved ones, sensation of floating above their own body, and contact with a transcendental being. These experiences have been taken seriously by scientists ever since. In 2001, the first prospective study on
10,000
15,000
CARDIOVASCULAR DISEASE
MALIGNANT TUMOURS
OTHER CAUSES
CARDIOVASCULAR DISEASE
MALIGNANT TUMOURS
OTHER CAUSES
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the subject was led in the Netherlands by the cardiologist Pim van Lommel. It showed that 12% of patients resuscitated after a cardiac arrest had an NDE. This takes us from the certainty that the brain stops a few seconds after the heart to a new hypothesis of death in stages. Published in 2014, the AWARE study—the biggest ever on the subject, conducted over four years involving more than 2,000 patients in hospitals in the United Kingdom, United States and Austria—showed that NDEs occur within about three minutes. It also found that nearly four out of ten cardiac arrest survivors indicated a sensation of consciousness but were unable to recall any specific memories. However, of that 39%, only 9% described experiences that could be defined as NDEs. Other recent neuroscience studies are also seeking answers. One of these is a piece of research by a team from the University of Michigan. The tests run on rats showed that brain activity shot up for 30 seconds after the heart stopped beating, especially in the areas associated with consciousness and vision. Dr George Mashour, one of the co-authors of the study, believes that the visions described by people who have had an NDE could be explained by the communication gone haywire between the different parts of the brain.
20,000
ACCIDENTS AND TRAUMAS
DEMENTIA
Although the specific causes and limits of NDEs remain highly debated, “one thing is sure,” says Gian Domenico Borasio in his book Mourir: those who’ve come near to death say that they fear it less and are more at peace about facing it. Their accounts should be taken in a positive light. /
FURTHER READING VIDEOS
BOOKS
“Mourir, ce que l’on sait, ce que l’on peut faire, comment s’y préparer“ (Dying, what we know, what we can do and how to prepare for it), Gian Domenico Borasio, PPUR, 2014 “La Mort“ (Death), Alexandrine Schniewind, PUF, 2016
“La mort, une inconnue à apprivoiser. Des étudiants en médecine engagent une réflexion“ (Death, a stranger worth knowing. An analysis by medical students), Marc-Antoine Bornet, Arnaud Bakaric, Sophie Masmejan and Sophie Kasser, Editions Favre, 2013
“It’s not about dying”, TEDxCHUV Talk by Gian Domenico Borasio, 2014 “Voilà comment je veux mourir” segment from the show “Temps présent” aired on Thursday, 13 October 2016, www.rts.ch ONLINE
www.penserlamort.ch, website of the Society of Thanatological Studies
25,000
RESPIRATORY DISEASE
RESPIRATORY DISEASE
However, nothing indicates that the findings would be similar in humans.
30,000 deaths per year
DEMENTIA
DIABETES
URINARY SYSTEM DISORDERS
INFECTIOUS DISEASE
CIRRHOSIS OF THE LIVER
ACCIDENTS AND TRAUMAS
DIABETES
URINARY SYSTEM DISORDERS
INFECTIOUS DISEASE
CONGENITAL CIRRHOSIS ABNORMALITIES OF THE LIVER
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CONGENITAL PERINATAL ABNORMALITIES MORTALITY
PERINATAL MORTALITY
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INTERVIEW BY
PATRICIA MICHAUD
in vivo
DEATH
INTERVIEW “TODAY PEOPLE THINK THAT MEDICINE SHOULD WARD OFF DEATH”
Jean-Daniel Tissot has co-directed a book on immortality. He met with “In Vivo” to discuss that utopia and the resulting scientific advances.
How would you define immortality?
jean-daniel tissot
Immortality is nonsense. It’s an utopia, a dream. I’d avoid defining it! Basically, immortality is a projection by humans to push back their own death.
So immortality is impossible, despite scientific advances?
iv
Medicine can keep moving forward as much as it wants. But as long as there are predators around us, we will die. Of course, experiments like cloning make people believe that we can jdt
Biography Jean-Daniel Tissot headed the Vaud Regional Blood Transfusion Service from 2007 to 2014. He was appointed Dean of the Faculty of Biology and Medicine (FBM) in August 2015. After publishing a first book on blood (Éditions Favre, 2011), he brought together about 20 thinkers from a wide range of backgrounds—a medical and literature professor, an artist, a biologist, a psychiatrist, a lawyer, an architect, a mathematician and a mountain climber—to look at the vast issue of immortality. Born in Lausanne in 1955, Jean-Daniel Tissot completed medical school at the University of Lausanne (UNIL). He has experience in internal medicine, clinical haematology and laboratory haematology and specialises in transfusion medicine.
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come close to immortality. But that doesn’t take into account the fact that our cells know they’ve aged. Everything in humans is designed for a programmed death. In animals too, even if we don’t know why, life expectancy varies with different species.
Humans may be programmed to die, but they don’t dream any less of immortality...
iv
jdt That paradox adequately reflects our contemporary society. It’s the epitome of the “Because I’m worth it” attitude, and the selfishness plaguing the population worldwide. We set everything. We block everything and refuse to change it. I’d recommend reading Chapter XIX of Book I in the Essays of Montaigne, “That To Study Philosophy is to Learn to Die”. One of the great lines in that beautiful essay is: “Chiron refused to be immortal, when he was acquainted with the conditions under which he was to enjoy it, by the god of time itself and its duration, his father Saturn.”
Does that mean dying is an expression of altruism?
iv
jdt Yes. As long as death takes place at the end of a full life.
Have children, instead of dreaming of immortality. Is that your message?
iv
jdt Absolutely. Leave your place to others! Humans are capable of creating wonderful things, for example in the arts. But it’s the works that should remain immortal, not the individual. Sometimes I get the impression that the people who dream of immortality haven’t actually taken the time to stop and think about what that means. Let’s suppose I don’t die. In a future society that will necessarily have under-
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gone deep cultural changes, will I still be myself? Won’t I be another person altogether, influenced by these changes? Along the same lines, I’m always amused when I notice that people rarely want to be immortal at age 120 but stuck at a more attractive age, like 60.
Jean-Daniel Tissot, Dean of the Faculty of Biology and Medicine at the University of Lausanne.
Isn’t one of the goals of medicine to prolong life?
iv
Some say that one of the keys to immortality is in apoptosis. What do they mean by that?
HEIDI DIAZ
jdt The point of medicine used to be to treat people. But today people think that the goal of medicine should be to ward off death. I’m not criticising medical progress. Transplantation is a tremendous step forward. I’m simply saying that people who were supposed to die don’t die, that we now have new technology to “repair” ourselves. I’m not just referring to transplants but to artificial organs. It stirs new hopes of immortality. Meanwhile, as we considerably reduce the list of causes of death, scientific developments leave us with a pretty grim choice of diseases to die of. In fact, people today are more afraid of suffering than dying. They dream of immortality but commit suicide more. Go figure... iv
Apoptosis is the controlled death of certain cells. They self-destruct to maintain balance within multicellular organisms. Take the case of a baby. Apoptosis is the process that keeps the foetus from being born with webbed feet. Some think that if we can control the mechanisms that govern apoptosis, we can in turn push back the limits of this programmed death, which on the scale of development shapes life and our appearance. It’s a sort of altruistic suicide. jdt
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iv
You don’t seem convinced...
Apoptosis perfectly expresses the fact that life depends on death. Take the foetus. By sacrificing themselves, the cells that form the membrane READ between the smaller toes “L’immortalité. help build the baby. We’re Un sujet d’avenir” all the result of a series (Immortality. A topic for of micro-deaths! ⁄ the future), Jean-Daniel jdt
Tissot, Olivier Garraud, Jean-Jacques Lefrère, Philippe Schneider, 2014, Editions Favre
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“Today, hospitals are forced to rationalise their procedures, which means that gradually health professionals will no longer be able to provide proper care.”
RUE DES ARCHIVES / MONIER
CYNTHIA FLEURY
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INTERVIEW
CYNTHIA FLEURY The philosopher and psychoanalyst has set up
the first research chair in philosophy at Hôtel-Dieu hospital in Paris. How is she applying that to rethink our care and our health? Interview. INTERVIEW: BÉATRICE SCHAAD
“Without humanity, caring for patients simply becomes mere repair work” new term – “replaceability” – to define this IN VIVO You believe that our society produces individuals process in which the individual is by and who feel they’re replaceable. What do you mean by that? large disqualified. CYNTHIA FLEURY The issue of suffering at work and the planned obsolescence that literally structures our economic system is not new, but it has grown considerably in IV What are the ramifications of this feeling the past 30 years. The neo-managerial revolution has hit of replaceability? How does that change the both public services and business organisations. It way individuals behave? CF We no longer tell pushes this notion of replaceability to its limit. If you the subject that he or she is worth nothing, but don’t agree to ethically unacceptable conditions, your we make them understand that they are replacejob becomes insecure, and you’re stripped of any able, like a product. That process wipes out any meaningful responsibility, replaced or even made individuality. And it has a number of consequences. redundant. Little by little, a purely business-oriented First is a form of discouragement, belittlement and world develops, mainly controlled by multinationlow self-esteem, which can even lead them to harm als, with their strategies and processes designed to themselves. Second is the resentment that results in monetise everything. This is not about conspiracy basic psychotic behaviours and can go as far as combut extreme, wildly deregulated capitalism, with mitting more dangerous acts against themselves or the consent of politicians who perhaps thought others. Lastly, history has always shown us that resentit was the right thing to do. But now we’re pracment translates politically into more xenophobic votes tically where we were at the time of the stock and withdrawal. market crash in 1929, in terms of the distribution of wealth in the world. At least in the United IV Does this growing idea that individuals are replaceStates, where 1% of the population holds 2% able apply to hospitals, professionals and patients of the world’s wealth. That’s apparently not a alike? CF Like many organisations, hospitals have been problem for anyone because it’s still going on. bombarded with a managerial revolution based on a payAll that makes me think that we need a per-service system. That’s surreal when you realise that time
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INTERVIEW
spent with the patient, personalising the diagnosis, is also a form of care. Today, hospitals are forced to rationalise their procedures, which means that gradually health professionals will no longer be able to provide proper care.
case. With the research chair, we wanted to look into how to “treat the hospital”, following in the footsteps of Tosquelles. A physician from a top school has also begun examining violence directed at medical students.
“HUMANITIES INTRODUCE THE POWER OF CRITICAL THINKING WITHIN THE HOSPITAL”
IV Does that violence occur only in hospitals? CF This violence is not specific to hospitals. It is typical of all of our organisations. But it’s more problematic at hospitals, a place where care is given. We are basically confronted with the madness of evaluation or profitability analysis, which is the polar opposite of health care and time given to others. These days, hospitals set profitability and budget targets. The point of the research chair is to bring the role of IV Should the price of care be factored into the value humanities back, to guide medical care and introof the health professional/patient relationship? duce the power of critical thinking within the CF The relationship and the time needed to make a hospital. We are working to develop a more holisdiagnosis, which also means not sending someone to tic, existential, organisational and policy-based have unnecessary X-rays or operations done. We’re in approach to health care. Hospitals need to gain a period of highly advanced technical know-how, more meaningful insight into the point of health which prevents the clinical aspect of medical care care, because the main partner in fundamental from coming into play. But medicine without clinical changes at work in medicine—such as the shift tocare is just computer science. Technical know-how is wards outpatient care and extended life expectancy a wonderful advantage if it’s based on caring about (and therefore educational therapy)—is the patient. others, recognising the subject.
Is that why you set up a research chair in phiIV Do you believe that we should develop a different losophy at the hospital? As a way of counter-balrelationship with the patient? CF Patients now want ancing technical know-how and hya more equal relationship with health proper-management? C F Relationships fessionals. For a long time they were treated BIOGRAPHY like children, denigrated and considered weakened by the management style that we’ve Cynthia Fleury passive. When patients explain that they are imported from the business world gives is a philosopher, objectified, belittled, and no one listens to health professionals the feeling that they no psychoanalyst them, we should not discredit what they’re longer know how to do their job. And the and professor at the American telling us. Fortunately, many physicians and management technique of bullying is alive University of other health care providers recognise the and well in hospitals too, like in that case Paris. She is patient’s expertise and contribution to their where a professor threw himself out a window a member of the National care. Narrative medicine is being increasat the Georges Pompidou hospital in Paris. Consultative ingly incorporated into both teaching and Ethics Committee practice. IV Did he leave a letter, an explanation? CF and the medical Extensive correspondence revealed the ex- psychology unit clusion he experienced, the constant hu- of France’s SAMU IV Can philosophy realistically bring emergency miliation, indifference, cynicism, scorn, false medical service. something to the development of mediaccusations and the feeling of being cut off The many books cine, considering its time frame is so from his responsibilities. It’s hardly a unique she has written much longer? CF Philosophy reminds us IV
include Pretium doloris. L’accident comme souci de soi published by Pauvert and La fin du courage. La reconquête d’une vertu démocratique by Fayard.
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INTERVIEW
that the tool should not run the show. The IV You highlight the importance of the individuation tool is a creation, and we have to continuprocess to guarantee a form of humanity in patient care. ously re-examine what we’re using it for. But the historical definition of professionalism for health Philosophy is not “lagging behind” science. care providers is to leave emotions out, to be a function It asks science to question itself and not to before being an individual. How do you resolve that tenseparate its development from critical analsion? CF Individuation is about decentring. It’s not about ysis. It also calls on science to establish new getting emotional. Knowing thyself in no way means egorights, for example in reciprocal agreements centric introspection. Who can provide care for someone between those who, as in the case of personalelse if they haven’t recognised the border that makes the ised medicine, donate their genomes and those other both subject and “person in need”? Individuals are who are responsible for figuring out how those not all-powerful. They are blatantly finite. They are only personal data should be protected and shared. a border, a line beyond which is fantasy and before which is disappointment. So looking towards others helps them not to sink into the mirror of their soul. The other name IV In the world of health care, time for reflexfor individuation is devotion, personal involvement. ivity is very limited. Do doctors attend your Humans are merely the individuation they attempt. classes? Do they take the time to do that? How If they don’t try enough, they lose access to their own do you get them to come? Is it required? CF Yes, humanity. Our work is to define criteria for professionthey come. But it’s just beginning to be integrated. alism that is in line with this individuation process and The research chair is too recent to draw any conadapted to the modern world. The right distance also clusions about their attendance. The classes are implies the right amount of closeness. open to anyone, and no one is required to come. Of course with all the partners of the research chair, we eventually want humanities to be more strongly IV Do you think hospitals are at risk of dehumaniintegrated into medical teaching, in both initial and sation? CF Humans and humanity are not the same professional education, and hospital practices. thing. They’re very different. Humans are humans. Humanity is what we learn to build together. Humanity is assimilated with an enhanced form of humans, IV What percentage do these humanities courses who can acknowledge their deadly impulses and crerepresent in the medical education programme? CF ate and build with others. All humans must take part For now, not enough. That will take time. But we’ve in protecting humanity. It’s a drop in a huge ocean. observed a generational phenomenon. Young people Given the place the hospital holds in society, its role are more aware of the need to think differently about and the tensions that play out there every day, we what medicine is becoming. Some on the rear lines must not give up. ⁄ told us that a research chair in philosophy is a luxury. There’s no money for that. It’s not a priority. We insist that it’s not a luxury, that it’s really necessary to protect care, health and recov- READ “Les irremplaçables” ery. If we’re not concerned with human- (The Irreplaceables) by ity, caring for patients becomes mere Cynthia Fleury, NRF, repair work. What mechanics do. The Gallimard, 2015. purpose of setting up this research chair NOTE in philosophy was to make an important The “5 à 7” the FBM contribution to helping reinvent the at On 1 December, the hospital. It’s very important not to let Faculty of Biology and genetic and computer science believe Medicine will launch its “5 à 7”, a programme that they alone can define its future. of events organised to discuss the department’s key strategic focuses. The speakers at this first event—Béatrice Schaad, head of communication at the Lausanne University Hospital, and the philosopher Cynthia Fleury—will analyse the place of humans in the hospital. At the César-Roux Auditorium, 5:00 p.m.
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DECODING
Today’s well-informed patients TEXT JULIE ZAUGG
Thanks to the Internet, patients are now better informed and take a more active role in their care. But the World Wide Web can also cause anxiety or encourage dangerous behaviour.
T
hat bloody cough, and those awful headaches, just won’t go away. And the doctor says he can’t see you before next week. So you grab your smartphone and type your symptoms into the search engine in the hope of finding out what’s
24
wrong with you. In Switzerland, 64% of Internet users have already gone there, reports the Swiss Federal Statistical Office. In the United States, the percentage is as high as 80%. Free, anonymous and available 24/7, the Internet is an attractive option for patients who want information. The vast majority of searches are done using search engines such as Google. “Google now produces search results not only based on key words but also on a question format,” says
MOST COMMON DISEASES IN ONLINE SEARCHES
CHRONIC DISEASES
Patients suffering from chronic diseases are among those who use online resources the most. They mainly go online for information about their treatment and how to manage their symptoms in the long term. With the new self-monitoring tools available (apps, smart wristbands, etc.), these patients can provide their doctor with a plethora of information, including their blood pressure, cholesterol level and blood sugar levels.
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DECODING
Marcel Salathé, a researcher at the Swiss Federal Institute of Technology in Lausanne, who analyses how diseases are discussed online. “It also provides more and more information directly in the search results, rather than simply sending users to other sites.”
having already picked up some information online, the person will get more out of the consultation and better understand what the doctor is talking about,” says Jean Gabriel Jeannot, the doctor who writes articles and gives advice via the website medicalinfo.ch.
In the spring of 2016, Google introduced Symptom Search. This new feature lets users type their symptoms into a search engine and comes up with a set of “condition cards” describing the potential health issues that could match, along with a list of treatments and advice as to whether they should see a doctor.
That can be crucial for patients with chronic illnesses. “These patients generally have to have long, complex treatments,” says Bertrand Kiefer, who heads up Planète Santé. “So it is especially important for them to understand all the aspects of their illness and show that they are taking an active role in their care.” For example, diabetic patients must understand how to calculate and check their blood sugar levels.
Patients go to medical search engines such as www.moteur-de-recherche-medical.org, specialised websites like WebMD in the United States, the French site Doctissimo and the Swiss portal Planète Santé, and biomedical literature tools such as PubMed. They also check the websites of public health agencies, such as the Swiss Federal Office of Public Health, university hospitals or the U.S. National Library of Medicine (MedlinePlus), and they consult health associations platforms, for RARE DISEASES People with rare example the Swiss Diabetes diseases often turn Association. A number of to the web to find questionnaires are also information. available online to find out if The Swiss platform you drink too much alcohol, www.info-maladiessuffer from sleep apnoea or rares.ch, jointly managed by CHUV risk developing osteoporosis and Geneva University or a cardiovascular disease. This profusion of information improves patient care. “If a patient goes to see a doctor
25
Hospitals, offers patients a database of rare diseases and links to organisations specialising in each of these diseases. A number of online support groups exist where patients can discuss their diagnosis and share information on the latest treatments.
Some chronic diseases, such as cardiovascular conditions, are silent illnesses with no symptoms. “If we want a patient to stick to their treatment, we have to make sure they are aware of the risks they are taking. And for that, the Internet is a valuable tool,” Jeannot says. Patients can also use the web to better understand their diagnosis. “The doctor doesn’t always have the time to explain all the symptoms of a disease or all the side effects of a drug,” says Dr Thomas Bischoff, a specialist in family medicine who recently retired from the Lausanne University Hospital (CHUV). Studies have also shown that patients only remember 40% to 80% of the information given during a doctor’s appointment.
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Rare diseases are another instance where the Internet is particularly useful. More than 6,000 have been listed, and new conditions are added nearly every day. “It’s impossible for doctors to know them all,” says Frédéric Barbey, associate physician at CHUV and co-director of the website www.info-maladies-rares.ch. With rare diseases, information found online can even help the doctor diagnose the problem. Dr Barbey recalls a patient with hypermobility of the joints who self-diagnosed his condition using the website. Patients suffering from rare or serious diseases, such as cancer, go online to seek support and break out of their isolation. “There are many online communities and Facebook groups where patients can talk to one another, share their expertise with other patients or discuss the side effects of their treatment,” Jeannot adds. These virtual communities can even develop into lobby or interest groups. “Some have even raised funds for research or influenced political decisions,” Salathé says. A number of studies have looked at the impact of the Internet on the relationship between doctors and patients. And it can be negative. One study conducted at a hospital in São Paulo in 2014 reported that unnecessary tests are sometimes performed and clinical visits are extended because patients don’t trust
26
their doctors. But the vast majority of patients trust their doctor more than the Internet. A poll conducted by the University of Bordeaux in 2015 found that only 6% believe they can get better answers to their questions online.
The study also highlighted how little trust health care professionals have in the Internet. Most of them warn their patients to be careful when using the Internet. The data presented on a platform such as Planète Santé are verified, but not necessarily on other sites, including Doctissimo. “The order in which search results are displayed on the Internet does not reflect the quality of the information but its ranking,” Kiefer points out. The websites that come up first are the ones that generate CANCER the most clicks—mainly This serious disease, due to the shock value of the which can develop information they post—or over several years, include the most links. generates many online searches. A whole host of blogs and forums devoted to this disease are available, including “Après mon cancer du sein”, “Fuck my cancer“ or the website “Seinplement Romand(e)s”. The Internet can also play an active role. The French organisation Seintinelles uses the web to connect researchers and patients willing to participate in breast cancer studies. An app developed one year ago by a physician from the Cancerology Centre in Le Mans asks lung cancer patients to answer 12 questions every week. This helps their doctor determine if there is any risk of relapse. “It has already reduced the number of deaths by 27%,” Jean Gabriel Jeannot says.
Even worse, many patients click on links to ads listed at the top of the search results page. These ads are designed to sell them dubious or even illegal treatments. And the more they search online, the more of them they see. “Search engines store all your search requests and use them to select which ads to display,” Salathé says. “There’s no medical confidentiality on the web.” This misinformation can have disastrous consequences. Some patients will choose
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DECODING
GILLES WEBER
not to see a doctor, thinking they can treat themselves based on the information they pick up online. At the other end of the spectrum, others start panicking after reading some of the alarmist information that is so easy to find. “On the Internet, a headache can turn into a brain tumour in a matter of three clicks,” Dr Jeannot says. This 21st-century condition even has a name— cyberchondria. ⁄
CHILDHOOD DISEASES
Parents, generally stressed about their children’s health, are avid users of the Internet. In Switzerland, the website www.monenfantestmalade.ch, is designed for them. “We want to offer them guidance before and after a consultation and prevent unnecessary visits to A&E,” says Alain Gervaix, a professor in the Department of Paediatrics at the University of Geneva and co-author of the site. The platform answers simple questions, such as “My child has been burnt. Should I see a doctor?” or “My child has vomited his medication. Should I give him another full dose?” It also provides fact sheets on the most common diseases. “Last winter, many parents came to us after reading about bronchiolitis because they had recognised the symptoms (especially rapid breathing) in their child,” the physician says.
“The Internet has put patients in control” Thomas Bischoff believes that access to information leads to better care. How has the Internet changed the doctor-patient relationship?
iv
It has given patients control. They no longer blindly obey their doctor. When a treatment is prescribed, the patient knows why they should take it. It’s a conscious choice. That has given rise to a relationship of equality between patients and doctors, like a partnership in managing the disease.
tb
iv
How are doctors handling it?
Patients sometimes have information about their disease that the physician doesn’t even know about. They may be aware of a new therapy before their doctor or even disagree with the diagnosis. That can destabilise doctors. But a better-informed patient is always a good thing.
tb
Can a patient really self-diagnose their condition online?
iv
Those cases are rare, but do occur. One of my patients, in his 30s, came to see me complaining of chest pain. After searching online, he was convinced he was suffering from a pulmonary embolism or an infarction. I reassured him immediately, telling him that, at his age, it was unlikely. One week later, he came back to see me, and he had indeed had a pulmonary embolism.
tb
THOMAS BISCHOFF, A SPECIALIST IN FAMILY MEDICINE, HAS RECENTLY RETIRED FROM CHUV.
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COMMENTARY
JEAN GABRIEL JEANNOT Physician and founder of the website Medicalinfo.ch
Email: an underutilised tool for physicians Simply put, I can’t do my job without email. I email my patients every day to send them their blood tests, radiography results, or reports from specialists they’ve consulted. My patients use email to ask me questions or keep me updated. While conversations over the phone allow for direct interaction, email can be sent and read at any time. The Internet has changed a physician’s relationship with his or her patients not only because of all the information it contains, but also because of its effect on communication. To my knowledge, there is no data on the use of email between patients and doctors in Switzerland. A survey conducted in France in 2015 among 1,042 physicians indicated a usage rate of 72%. Email is not yet used on a daily basis: 11% of doctors stated they used it often, and 61% reported they used it occasionally.
One of the disadvantages of email listed in the article is that no study has shown that its use impacts patient health. The author also argued that the telephone is better because of its immediacy. Frankly, I don’t find these arguments very convincing. However, one downside should be seriously considered—the risk that physicians might find themselves overwhelmed by emails. To avoid this situation, certain rules need to be followed. That’s why I include a link to the rules for using email, which are based on official recommendations, on the bottom of each email I send.
Personally, I’m convinced patients understand medical information sent via email better In an article published in 2015 in the British than when it’s communicated solely over the Medical Journal, two doctors, one in favour of phone because they can reread the information using email and the other opposed, presented as many times as they want. I also feel it their arguments with support from studies on encourages patients to ask me questions they the subject. The author who defended the use of otherwise wouldn’t find important enough to ask email pointed out that patients who contact their me over the phone. Finally, email can be sent to doctors using this method generally have a high several people at once; this option is very useful as level of satisfaction. medicine is increasingly being practised within a network of care providers. For all of these reasons, I am convinced that email is a helpful addition to patient consultations. ⁄ PROFILE
DR
An internal medicine specialist in Neuchâtel, Dr Jean Gabriel Jeannot has developed a keen interest in e-health. He is the founder of three websites: Medicalinfo.ch, Cabinetmedical.ch, and moteur-de-recherchemedical.org.
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READ ON
The doctor’s blog, “La santé (autrement)”, is available on the “Le Temps” newspaper’s website.
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ORGAN TRANSPLANTS FROM PIGS
Every year only one-third of the patients on transplant waiting lists get an organ. Thanks to major genetic advances, pigs could soon supply organs for human recipients.
MAURO FERMARIELLO / SCIENCE PHOTO LIBRARY
TEXT: YANN BERNARDINELLI
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“Waiting lists are growing relentlessly, while the number of organ donors remains inadequate,” says Manuel Pascual, chief physician at the Centre for Organ Transplantation at the Lausanne University Hospital (CHUV). After its release in the 1980s, the immunosuppressant ciclosporin was used to perform the first human-to-human organ transplants and suppress acute immune responses. Léo Bühler, medical director with the Visceral and Transplantation Surgery Service at Geneva University Hospitals (HUG), believes that this drug was a revolution and is the reason why we now have a shortage of organs. To solve that problem, doctors could one day be able to prescribe pig organs for their patients. “These animals offer an unlimited source of organs that are immediately available, and we could begin treating the disease much earlier.” XENOTRANSPLANTATION IS BACK ON THE TABLE
Xenotransplants, meaning any transplantation of animal organs into humans, are not a new idea.
Back in 1906, the French surgeon Mathieu Jaboulay performed the first transplants using goat and pig kidneys into humans. These attempts resulted in failure due to the rapid rejection by the recipient’s immune system. Despite the progress in immunology and technology over the past 110 years, xenotransplants are still rejected by the human body. But recent progress in genetic engineering, more specifically the development of CRISPR-Cas9 technology, could offer new options. CRISPR-Cas9 is a new technique that works like a pair of precision molecular scissors used to cut up DNA. This system makes it relatively easy to modify gene sequences. Nicole Déglon, director of the Neuroscience Research Centre at CHUV, explains that the previous systems using proteins to recognise a DNA sequence were too complex and unreliable. CRISPR is based on RNA, which is reliable and easy to synthesise. The protein Cas9 simply cleaves DNA and is universal.
TRANSPLANTING ANIMAL TISSUE Xenotransplants involve more than just vascularised organs. Animal cells can also be encapsulated in a porous synthetic membrane permeable to nutrients, oxygen and some metabolites while protecting the transplanted organ against the recipient’s immune system. Cellcaps, a spin-off from HUG and the Swiss Federal Institute of Technology, hopes to launch clinical trials in this area within the next three years.
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INNOVATION
The bonus is that the technology can be applied in vivo and accelerates the production of genetically modified organisms in unprecedented ways. Manuel Pascual believes that this advance could spark renewed interest in xenotransplantation research by speeding up the humanisation of pigs. “Ten years ago, no one would have predicted a future for organ xenotransplantation, but discussions of potential clinical applications could pick up again.” WHY PIGS?
The best candidates for cross-species transplantation are pigs, due to their similarity to humans. “We share nearly 99% of the same DNA, and our organs are close in size and function in virtually the same way,” says Alexandre Reymond, geneticist and director of the Center for Integrative Genomics (CIG) at the University of Lausanne. “Despite this similarity, these animals are genetically distant enough from humans to limit the transmission of animal viruses.” Another advantage is that sows carry up to ten piglets every three months, Bühler says. This rapid reproduction is ideal for manipulating genes (see inset), because, compared with other species, the frequency and number of births make it easier to cross-breed and select individuals that carry or do not carry modified genes. The probability of getting a genetically modified
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individual is higher in the case of multiple births.
Another major problem is that pigs carry retroviral vectors that are potentially harmful for humans. “These are viruses that modify the DNA of their host,” Reymond says. Again, animals should be genetically modified to suppress any traces of retroviruses. That is in part what the Harvard University geneticist George Church achieved in in vitro cell lines (“Science”, 2015) using CRISPRCas9 technology, showing the full potential of this new technique in xenotransplantation. NO ETHICAL OR LEGAL IMPEDIMENTS
The idea may sound shocking, but the ethical and legal CORPORE SANO
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Small genetic differences between pigs and humans also explain the severe rejection of pig transplants. One of the causes is alpha-gal. This sugar is not found in humans, and transgenic animals without alpha-gal have been created. However, it “was a huge disappointment, because organ rejection continued,” Pascual says. Today, cross-species organ transplants have still only been tested in primates and, for the time being, have not produced results that are encouraging enough to take forward into clinical trials. CRISPR-Cas9 could stimulate research by making it easier to genetically modify pigs, as pig genes could be deleted and replaced with human genes.
WHAT ABOUT MONKEYS? Apes are even closer genetically to humans and have organs that are compatible in terms of size and function. This, in theory, makes them good candidates to be donors. But there are significant disadvantages to using apes, mainly in terms of reproduction. “Pigs reach sexual maturity when they are seven months old, but it takes baboons ten years,” Léo Bühler says. “And they only carry one individual at a time. It’s not enough.” Furthermore, Swiss legislation bans the use of primates as an animal resource and, for ethical reasons, sacrificing apes and monkeys is less acceptable due to the behavioural similarity with humans,” Manuel Pascual says.
obstacles could be overcome. In Switzerland, federal law on organ transplants governs xenotransplantation, requiring authorisation from the Swiss Federal Office of Public Health (FOPH). Léo Bühler states that there are no religious barriers, as the world’s three major religions INNOVATION
have approved the concept of xenotransplantation to treat people. It is only eating pork that is forbidden for Jews and Muslims. So one day, we might hear, “Pork kidneys for 12,” not at a restaurant, but at a hospital! ⁄
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WHEN PARENTS JUST CAN’T TAKE IT ANYMORE Burnout is not only happening at the workplace. It can happen at home too. And the condition has spared no type of family or socioeconomic category.
“I’
m a special education teacher and I love my children more than anything, but I started screaming at them and
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spanking them,” says Stéphanie Allenou, author of the book “Mère épuisée” (Exhausted Mother), who suffered a burnout while she had a three-year-old daughter and 18-month-old twins at home. “I couldn’t stand my children anymore and wanted to run away.” The thirty-something woman from Nantes, France, managed to pull through with the help of therapy and childcare. After her ordeal, she set up a centre for young parents and even gave birth to a fourth child. “It’s proof that we can get through it,” she says. Liliane Holstein, psychoanalyst and author of “Le Burn out parental” (Parental Burnout), sees exhausted parents several times a day. “The number of people who come to see me for this reason has significantly increased over the past ten years,” she says. “Mothers are affected more than fathers.” Marlène Schiappa is the author of the blog “Maman Travaille” (Mum Works) and recently published the book “J’arrête de m’épuiser: comment prévenir le burnout” (I’m done wearing myself out: what you can do to prevent burnout). She conducted a survey of more than 2,000 women, and her figures speak for themselves: 63% of mothers feel they suffer from chronic exhaustion. “My research has also shown that 80% of household chores TABOO
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are done by mothers, who also care for children 98% of the time when they are sick and oversee their schooling and activities,” Schiappa says. “The majority of women are on the front lines.” THE MANY CAUSES OF EXHAUSTION
Parents are tired, but not all of them will go so far as a burnout. So why do some of them fall apart? The experts we asked were clear about it. Exhaustion affects all types of parents and all types of families. Most often, it comes from a combination of several factors. “There are personality types that are more susceptible to exhaustion,” Holstein says. “Some people are obsessed with perfection and want to control everything. They suffer from mental rigidity. Burnout syndrome can
“OUR SOCIETY IS EXTREMELY STRESSED. CHILDREN NO LONGER PLAY IN THE STREET. PARENTS CAN’T SEND THEIR KIDS TO GET BREAD AT THE BAKERY.” LILIANE HOLSTEIN, PSYCHOANALYST
GRANDPARENTS BURN OUT TOO Burnout does not only affect parents. Grandparents, who often look after their grandchildren, can also suffer from the phenomenon. “I see it regularly,” says the psychoanalyst Liliane Holstein. “I sometimes even see two generations at the same time to find solutions.” Grandparents are increasingly involved in childcare duties. And sometimes the burden is too heavy. “They have a hard time saying no to their children because they’re afraid of their reaction,” says Norah Lambelet, president of the School for Grandparents in French-speaking Switzerland. “But taking care of grandchildren is a huge responsibility. That can become exhausting, despite the enjoyment they get out of it.” To prevent burnout, we have to define what we are capable of giving and talk about it. “This tension often reveals poor communication between parents and their children that’s been around for a long time,” Holstein says. “It can quickly get complicated without help.”
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also be linked to certain patterns developed in childhood. I still see that many parents are unable to set limits on their children. This pushes children to behave in awful ways until they find some structure. It’s a vicious circle.” The psychoanalyst notes a generational difference. Children born in the 1980s and 1990s tend to want to control everything. They come from families that upheld the values of the May 1968 rebellion, which did away with all limits. “Our society is extremely stressed, with constant economic insecurity and ambient tension, largely fuelled by the media. Children no longer play in the street. Parents can’t send their kids to get bread at the bakery. They take care of everything now. Everything is standardised. And it’s a lot to handle. Lots of parents feel isolated.”
play an important role in exhaustion,” she says. “Parents no longer function as a team in dealing with their kids. And that can cause more agitation and anxiety in children. Any difficulties experienced by the children in turn exacerbate the conflicts between the parents.”
“CONSTANT ARGUMENTS BETWEEN COUPLES PLAY AN IMPORTANT ROLE IN EXHAUSTION” CHRISTEL VAUDAN, FAMILY PSYCHOTHERAPIST
Christel Vaudan, a family psychotherapist and head of couples and family consultations at the Lausanne University Hospital (CHUV), agrees that society sets very high standards for parents. No one places any value on rest and inactivity anymore. “Constant arguments between couples also
SYMPTOMS: HIS AND HERS
The signs of exhaustion are not the same in mothers and fathers. It is the combination of factors and their development over time that should be raising red flags. “In women, we often see a state of constant hyperactivity,” Holstein says. “Everything has to be perfect. Failure is not an option. Their libido decreases, and they’re no longer interested in their partner.” Mothers can also sometimes feel ambivalence towards their children, which can degenerate into violence. “Some parents see us after ‘losing it’ and slapping one of their children for the first time,” Vaudan says. “It’s often a sign that excessive tension has been building up until it explodes. And that scares them.” Fathers, however, tend
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to experience some form of withdrawal. They escape through addiction or risky behaviour. They sometimes want to get away from it all and never come home. “I’ve seen fathers suffering from a burnout walk around the block three times before gathering the courage to go home,” Holstein says. SHORT-TERM THERAPIES
When one parent suffers from a burnout, it often means that the atmosphere at home has been toxic for months. And that will have consequences on the children. “They can change behaviour and become extremely agitated, or go in the opposite direction and withdraw,” says Vaudan, who encourages parents to seek help earlier. “They don’t have to see a professional right away, but talking about it with people they trust can help a lot,” he says. “If that’s not enough, it might be useful to see a couples or family therapist who can, depending on their needs, guide, treat or steer parents towards family support organisations.” For parents experiencing a burnout, even therapies lasting a few weeks can lead to improvement. “A burnout can be an opportunity for families,” Holstein says. “It’s the chance to fix bad habits. I see progress after four to six weeks of therapy. Parents are more relaxed. They run around less from morning to evening and listen to their children more. And the children are as happy as ever. That’s all they wanted.” But do some exhausted parents simply regret having had children? The study by CORPORE SANO
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the Israeli sociologist Orna Donath “Regretting Motherhood”, published in 2015, analyses the lives of mothers who say that, if they had the chance to do it all over again, they would not have had children. “It’s a taboo issue,” Schiappa says. “I meet mothers all the time who tell me that children don’t bring them what they thought and they don’t feel cut out to be mothers.” Stéphanie Allenou adds, “Many mothers suffer from a lack of recognition, even from their partner. The question we should be asking is, ‘what has our hyperindividualistic society failed to do that keeps these women from experiencing their motherhood in a positive way?’”/
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THE BOTTLE MATTERS PHARMACY A medicine’s packaging is carefully chosen based on its content. The packaging must protect the medicine while also providing consumers with safe and easy access. Here are a few examples. TEXT: JULIEN CALLIGARO, IMAGES: GILLES WEBER
Plastic or glass, vials or aluminium blister packs—the type of material and format used to package a medicine are closely related to its content. “The container that comes into direct contact with the product, which is also called the primary packaging, aims first and foremost to protect the medicine from physical impacts, light and oxidation,” says Bertrand Hirschi, deputy head pharmacist at Lausanne University Hospital (CHUV). A medicine’s packaging also includes the cardboard box that surrounds it, or its secondary packaging. “For a medicine to be selected and distributed at a hospital, it must meet a certain number of criteria, including traceability, readable instructions and an indication of its dosage,” says Bertrand Hirschi. “This information, which can feature on either the primary or secondary packaging, makes the medicine easier to recognise and helps ensure it is used correctly.” The CHUV pharmacy has three “Robin” robots (see photo) for stocking boxes weighing a maximum of 800 grammes. Each device contains nearly 16,000 boxes and stores 940 different products.
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EVER-PRESENT PLASTIC
A plastic vial of saline solution for thinning nasal mucus. The product can be administered directly after manually removing the cap. Many medicine containers are made out of plastic, which offers many advantages: it is light, impermeable to gas and odours, transparent and can be made into a variety of shapes. CORPORE SANO
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TRIPLE PACKAGING
The analysis of cerebrospinal fluid, which flows around the spinal cord, can reveal the presence of bacteria, viruses or other abnormal substances. Collecting the fluid can cause dizziness and nausea, so an analgesic must be injected prior to the procedure. The safest way to do so is to use a sterile plastic vial, which in turn is packaged in plastic to ensure it remains sterile. “Glass cannot be used for this procedure,” says Jean-Christophe Devaud, the pharmacist in charge of logistics at CHUV. “If glass debris reaches the spinal column, it could cause permanent damage to the patient.”
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GLASS FOR LIQUIDS
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“Glass is the ideal material for liquids,” says Bertrand Hirschi. “It is long-lasting, inert, clean and transparent.” Just like this calcium solution (right), glass is used to contain many medicines. To open the vial, all you have to do is break the upper part of the container at the point where it narrows, below the blue dot. Drinkable magnesium solution (above) is also packaged in glass vials. The format makes it easy to quickly consume the exact dose.
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SPECIAL PROTECTIONS
Some medications require additional precautionary measures. This bottle, which contains an intravenous chemotherapy solution, is covered with a transparent plastic film. “Toxic powder residues have been found on some containers,” says Jean-Christophe Devaud. “Starting over a decade ago, manufacturers added protective films to isolate these residues and protect the health professionals who handle them.” The bottle is made out of tinted glass to protect the medicine from the light, which degrades the product and shortens its shelf life.
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FRANÇOIS ROUILLER
Theologian and head of the ecumenical chaplaincy at CHUV
Every life deserves to be treated. Until the end.
Rites still fill an anthropological need to solemnly mark a passage, associate symbols and feel supported as part of a human community. These days, chaplains face the challenge of coming up with rituals that can no longer draw exclusively on traditional religious acts. This means ritualising death in a meaningful way that is adapted to each situation. Even in a leading hospital on the cutting edge of technology, modern chaplains have to be creative in finding the most genuine, the most relevant and the most significant words and acts for each person, aligned with their own references and spirituality in this situation that is so unique and important for the individual.
Chaplaincy has long been associated with death. And still is. Traditionally, a chaplain represented the church or a religion and was essentially responsible for administering sacraments and last rights to the dying. That role has since evolved. Today, end-of-life support only represents a small part of what spiritual caregivers provide at hospitals. The main part of their role involves providing day-to-day spiritual support to patients. This modern approach reflects our society’s general shift towards secularisation. Only 18% of the Swiss population feel it is important to be affiliated with a religious community. That doesn’t mean that the rest lack any spirituality or religious representations. It simply means that they no longer fit neatly into the clearly defined structure of traditional religions.
In these times, the spiritual guide is an expert—but he or she is not the only one. Guiding someone through death does not mean that treatment stops. Health care professionals also play a role in this rituality, through the care they provide (ritualised in its own way by the procedures they follow), their attentiveness and ability to listen, the words they choose and often by simply being there, offering kindness and support until the very end.
SAM
Death is a mind-boggling mystery, sometimes experienced as a defeat. Offering meaningful rituals surrounding death cannot jeopardise the care, as the care never stops. And absolutely every life deserves that care, in its infinite dignity. Acknowledging the existence of this rituality with utmost professionalism may just be one of the most significant victories of care over death. ⁄
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COMMENTARY
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NAME ZEBRAFISH OR “DANIO RERIO” ADULT SIZE 4 TO 5 CM FEATURES 70% OF COMMON GENES WITH THE HUMAN BEING
The zebrafish — danio rerio
This tiny fish is a model organism for carrying out research on genetic diseases. TEXT: BERTRAND TAPPY
RAPID LIFE CYCLE Its extremely rapid life cycle and ability to reproduce all year long make it very easy for researchers to observe how a genetic abnormality develops over several generations. “Unfortunately we can’t grow everything in cell cultures in a laboratory,” says Jérôme Wuarin, a research assistant at the CORPORE SANO
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Dean’s Office of the Faculty of Biology and Medicine (FBM). “Certain fields, such as neuroscience and genetics, can learn a lot from the zebrafish.” In Lausanne, several researchers have expressed their interest in the tiny fish, including the team headed by Professor Francesca Amati, who studies muscle ageing processes. This has recently prompted the University of Lausanne to launch a project to develop a platform for breeding zebrafish. Such an endeavour would also have the advantage of being much less complicated and costly than running a facility with mice. “We would be in line with the current trend of reforming, reducing and replacing experiments on animals as soon as possible,” Wuarin says. ⁄
PAUL BULL / ISTOCK
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or this first edition of “In Vivo”’s Fauna and Flora section, which looks at species currently used in research, we have chosen to shine the spotlight on the zebrafish. One may wonder what humans could possibly have in common with this tiny little fish. But in fact, we share more than 70% of our genes with it!
CURSUS
COMMENTARY
CURSUS
self-sacrifice, intuition, honesty, patience, naivety and, of course, curiosity. These are the requisite Jean-Daniel Tissot qualities for anyone who Dean of the Faculty of wants to challenge the things Biology and Medicine at we take for granted and test the University of Lausanne what are often iconoclastic hypotheses. As an example, we can look back five centuries at those ecognise the value of research.” who believed that we could reach the Indies from the west. Those words But some explorers of science never have become a see the hallowed shores. Tailwinds are few, catchphrase in academic, political but the days and months of dead calm are many. And researchers, like solo sailors, are and economic circles. We wholly agree. But alone—alone in confirming, repeating and let’s get a few things straight. All too often, it is believed that knowledge is built on success reproducing their experiments. And they are alone when they get stuck or lose their way. stories, Nobel Prizes and scientific breakIronically, scientists are often alone, even throughs. But sometimes—often—the road when research is successful. These days, the to success is a bumpy one. A vast amount of trend is moving towards large, multi-centric research leads to dead ends, but in no way scientific studies, which can bring together does that invalidate the researcher’s work. more than 40 authors. Evaluating the Negative results are useful. They too contribution of any one individual becomes help build the foundations, the basis of our virtually impossible. knowledge. Well-structured research, which As such, researchers rarely experience produces demonstrable, traceable, even any glory. They must constantly retain their negative results, is still valid research. This humility when it comes to their subject fruitless work clears the path to advance of study and in academics. The Faculty of our knowledge, even if that simply means Biology and Medicine wants to give more preventing others from heading down the recognition to these scientists working in the same wrong route. We need to recognise background, be they lost navigators or the the value of these “failures” and publicise forgotten artisans in the cathedral of science. them as we do the successes. This idea will be submitted at the next meetAnd we need to recognise the value ing of the academic council of professors, in of the people behind this work. Working the hope of leading to concrete measures. ⁄ in research takes courage, not to mention
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CAREER AT THE CHUV
Research, a chosen path
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JOSEP SOLA
TANDEM
PATRICK SCHOETTKER
CURSUS CURSUS
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CAREER AT THE CHUV
he operating Equipped with their wireless sensors, equipment reputed room could be for being extremely Patrick Schoettker and Josep Solà entering a reliable,” says hope to revolutionise the way things Schoettker. “Placed new era of wireless monitoring. Those strategically, the are done in the operating room. cumbersome cables sensors pick up TEXT: JADE ALBASINI, PHOTOS: GILLES WEBER attached to devices, signals down to long used to measure the nanosecond!” patients’ physiological data, could soon be replaced by high-precision, autonomous sensors. The CSEM has been developing this technology Electrodes secured to the skin determine the for many years. “We began designing sensors patient’s blood pressure, electrocardiogram, for astronauts with the European Space Agency in oxygen saturation, respiratory rate and body 2004. Our research was then applied to develop temperature, all in real time. These innovative smart clothing for sports before being adapted to adhesives could then send the data collected to biomedical solutions,” says Josep Solà. A chance the tablets used by health care staff via Bluetooth. encounter with Patrick Schoettker offered the Not only would that mean shedding some of the opportunity to optimise the system. “A number bulk of monitoring equipment, but it would also of frustrating issues in current medical practice make things easier for anaesthetists. can be solved by engineers,” the doctor says. “We need to explore these synergies further.” That is the goal of the partnership between (Read the full report in “In Vivo” 9). Patrick Schoettker, head physician in clinical research at the Anaesthesiology Service at the This form of monitoring has proved its worth in Lausanne University Hospital (CHUV), and Josep the operating theatre, but Dr Schoettker remains Solà, an engineer from the Swiss Centre for cautious. “This environment is ideal for these Electronics and Microengineering (Centre Suisse types of measures. But, for example, we don’t d’Electronique et de Microtechnique or CSEM). know how the adhesives react in natural light,” The project set up by the doctor-engineer team is he says in discussing potential development, financed by their respective institutions and was such as monitoring patients in outpatient care. rapidly given the green light by Swissmedic and Precaution aside, the partners are sure that these Swissethics. An initial set of tests carried out on sensors could be applied to other needs in the about 40 patients, to compare the measures taken future, such as measuring cardiac output. “The by traditional equipment based on calibrated technology offers real economic potential, but standards with those taken by the wireless sensors, we have to wait for hard data before bringing produced results that exceeded the duo’s wildest the device to market.” ⁄ expectations. “We’re still in the analysis phase, but the prototypes come closer to actual data than
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CHUV now on Facebook CHUV has increased its presence on social media. After joining Google+, LinkedIn, Twitter and Instagram, the hospital has been active on Facebook since July 2016. The new page features videos of what’s new at CHUV, links to press articles containing quotes from CHUV experts and a calendar of public events organised by the hospital. The CHUV Facebook profile will not be used to give medical advice or take appointments. SG COMMUNICATION
www.facebook.com/CHUVLausanne
Psychiatry: new director To replace JeanMichel Kaision, now retired, Vincent Schneebeli took over as director of patient care at the Department of Psychiatry on 1 October 2016. With 1,600 employees across ten services and five department units, 349 hospital beds and an extensive range of outpatient services that work closely with the public, the Department of Psychiatry is one of the largest clinical departments at CHUV. SG
Prestigious grants Sophie Martin, from the Fundamental Microbiology Department at UNIL, was awarded a €2-million Consolidator Grant from the European Research Council (ERC). Her research focuses on developing our understanding of how two cells fuse to form a single cell. This relatively unexplored process is the very essence of fertilisation in sexual reproduction. Bernard Thorens from the Center for Integrative Genomics (CIG) earned a second ERC Advanced Investigator Grant in recognition of his work. The €2.5 million in funding will go towards a project aimed at gaining greater insight into the brain’s role in causing eating disorders and metabolic diseases such as obesity and diabetes. SG
RESEARCH
UNIL waging war on bugs Researchers from the University of Lausanne (UNIL) have developed a new test to detect the presence of mosquito species that spread diseases including dengue fever, chikungunya and Zika. They applied an environmental DNA (eDNA) approach, which analyses the DNA of living organisms found in their environment—in this case water. Also at UNIL, a research team from the Department of Biochemistry studied the dissemination of Leishmania parasites, which use sand flies as their vector to spread leishmaniasis. They revealed the role of a pro-inflammatory protein called IL-17. Blocking IL-17 could reduce the severity of infection in humans. SG
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CHUV has compiled an international registry to list women exposed to the Zika virus during pregnancy. This project aims to collect an adequate number of cases to conduct broad-based epidemiological studies. CHUV has asked 4,000 obstetricians worldwide to share their data to expand the registry. SG VIRUS
New leader for Medical Informatics Ferath Kherif, deputy director of the Neuroimaging Research Laboratory at CHUV, has been appointed to lead Medical Informatics, a sub-project of the large-scale European initiative, the Human Brain Project. Medical Informatics is developing a platform to improve access to clinical and imaging data. These new tools and services used to store and process hospital and research data will enhance our understanding of the brain and lead to a more accurate, more efficient diagnosis of brain disorders. Dr Kherif will hold this position until 2018. SG BRAIN
Toughening the fight against cancer Two major oncology projects were launched in Lausanne in September 2016. ONCOLOGY
Lausanne is strengthening its reputation as a hub for cancer research. In mid-September, the Lausanne University Hospital (CHUV) opened a new cell-production laboratory for immunotherapy. Considered one of the most promising ways of treating cancer, this approach involves “mobilising” the patient’s immune defences to fight the disease. The new facility located in the Biopôle science park in Epalinges will produce immune cells using tumour cells harvested directly from patients. Scientists hope to develop new ways of caring for cancer patients when standard treatments are ineffective. The laboratory will be operational in 2017. The cornerstone of the future Agora Cancer Centre was also laid in September. The 80-million-Swiss-franc project is the fruit of a partnership
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ERIC DÉROZE
Zika registry
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between CHUV, the University of Lausanne (UNIL), the Swiss Federal Institute of Technology in Lausanne and the ISREC Foundation. Located near the CHUV site, the new facility is designed to combine the academic and clinical expertise of 300 researchers in one place to fight cancer. The Agora, set to open in late 2017, will bring together experts from medicine, biology, immunology, bioinformatics and bioengineering. The Ludwig Institute for Cancer Research, a U.S. organisation at the forefront of cancer research, elected Lausanne as one of its main sites in 2015, investing 300 million Swiss francs in the project. SG
IN VIVO
Magazine published by the Lausanne University Hospital (CHUV) and the news agency LargeNetwork www.invivomagazine.com
PUBLISHER
CHUV, rue du Bugnon 46 1011 Lausanne, Switzerland EDITORIAL AND GRAPHIC PRODUCTION T. + 41 21 314 11 11, www.chuv.ch LargeNetwork, rue Abraham-Gevray 6 redaction@invivomagazine.com 1201 Geneva, Switzerland T. + 41 22 919 19 19, www.LargeNetwork.com CHIEF EDITORS
Béatrice Schaad and Pierre-François Leyvraz PROJECT MANAGER AND ONLINE EDITION
Bertrand Tappy THANKS TO
PUBLICATIONS MANAGERS
Gabriel Sigrist and Pierre Grosjean PROJECT MANAGER
Melinda Marchese
Alexandre Armand, Marie Bertholet, Nicolas Berlie, Francine GRAPHIC DESIGN MANAGERS Billote,Valérie Blanc, Gilles Bovay, Virginie Bovet, Darcy Christen, Muriel Cuendet Teurbane, Stéphanie Dartevelle, Diana Bogsch and Sandro Bacco Diane De Saab, Frédérique Décaillet, Muriel Faienza, Marisa Figueiredo, Pierre Fournier, EDITORIAL STAFF Serge Gallant, Katarzyna Gornik-Verselle , Aline Hiroz, LargeNetwork (Jade Albasini, Yann Bernardinelli, Clément Bürge, Andrée-Marie Joëlle Isler, Nathalie Jacquemont, Nicolas Jayet, Dussault, Sophie Gaitzsch, Malka Gouzer, Melinda Marchese, Patricia Michaud, Emilie Jendly, Anne-Renée Leyvraz, Cannelle Keller, Steve Riesen, Geneviève Ruiz, Julie Zaugg), Béatrice Schaad, Bertrand Tappy. Simone Kühner, Laurent Meier, Brigitte Morel, Thuy Oettli , Manuela Palma de Figueiredo, Giovanna Panese, Odile Pelletier, Fabienne Pini ICONOGRAPHIC RESEARCH Schordere, Isabel Prata, Sonia Ratel, Marite Bogsch & Bacco, Sabrine Elias Ducret Sauser, Dominique Savoia Diss, JeannePascale Simon, Elena Teneriello, Aziza Touel, COVER Laure Treccani, Céline Vicario, Vladimir Illustration by Kotryna Zukauskaite Zohil and the CHUV’s Communications Service. IMAGES
SAM (Eric Déroze, Heidi Diaz, Patrick Dutoit, Gilles Weber), Lo Cole, Sébastien Fourtouill, Jérémie Mercier
DISTRIBUTION PARTNER
BioAlps
LAYOUT
Bogsch & Bacco for LargeNetwork TRANSLATION
Technicis PRINTING
PCL Presses Centrales SA 18,000 copies in French 2,000 copies in English The views expressed in “In Vivo” and “In Extenso” are solely those of the contributors and do not in any way represent those of the publisher.
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IN EXTENSO
One minute in the bloodstream