Member Spotlight: Claes Hulting
How did you come to choose the field anesthesiology as your original practice specialty?
When doing my terms in medical school, I was fascinated by the acute phase. I liked the fact that, as an ICU intensivist/anesthesiologist, one dealt with death versus life. There was no time or room for going back to the archives and spending time trying to figure out odd diagnoses or various types of therapeutic alternatives. In dealing with the acute phases of medicine, in my perspective, medicine boils down to the crucial key elements – living or dying. For me, that was one of the ultimate questions that made me pursue that specialty. Apart from that, I was also eager to be able to work in any country, on any continent, without language barriers. Maybe another factor involved in the decision-making was the “action part.” I have always been an active and proactive person with a lot of innate energy that I got a chance to use in my role as an acute medical officer.
Please tell us about the fateful event that changed your life.
The last day of May 1984 was a hot, early summer day in Stockholm. A handful of colleagues from the Department of Anesthesiology at the Karolinska University Hospital went on a late afternoon/evening steamboat tour into an archipelago to have a seminar/workshop. We stopped at a small island where they had a restaurant and a sauna in connection with the jetty. We, as part of Swedish culture, went into the sauna (in order to make it less agonizing to jump into the water). I dived in once, and when I dived in the second time, I hit a concrete pillar that was there in order to extend the jetty. The work under construction was not marked by any pole or stick, and I was not aware of the fact that that massive concrete was there. I hit my head and I sank to the bottom, about 6 feet (2 meters) deep. My colleagues soon understood my predicament and jumped into the water and brought me up to the surface. The first thing I said was, “thank you for saving my life.” I was brought onto the jetty. I was temporarily stabilized by using the door to the sauna and some duct tape. A helicopter came after about half an hour and brought me into the hospital. I had one of my very experienced neuro-anesthesiologists with me during that airlift. He kept my head in traction, because we thought it may have some impact on the outcome of my crushed 6th cervical vertebrae.
I came into the hospital and went to the x-ray department. My wife to be came in and we were in this room trying to reflect over the new situation. It was a very philosophical talk. At that time there was no grief, there was only existentialism.
It came as a shock for most of my colleagues during the early morning radiology rounds when they realized that my X-ray images were shown as the first case. I was in traction in a Stryker bed for six days. A 35 mm x 14 mm piece of bone from my tibia was used to stabilize my spine. I had no screws, no hardware implants and no cerclage. I used a cervicothoracic brace for 12 weeks.
Please describe your experience during your own SCI rehabilitation
I had a single room on the 8th floor at Karolinska. Of course, it is a significantly different experience to be a patient in a hospital where you are also a practicing doctor. The in-house rehab at the Karolinska University Hospital doesn’t differ very much from SCI rehab in any other good facility in the world. I worked hard. A key thing though is what you do when you are not in PT/OT or other program elements. How much activity can you add without exhausting yourself? More than most people working with spinal cord injured patients think and believe.
Barbro and I decided to get married two weeks after my injury, despite my SCI. We gathered 80 people in the Department of Physiotherapy. Originally, we had planned to have the wedding in a small chapel on a small island in the southern archipelago where we have our summer house. I was, of course, still suffering from hypotonia and used a tilt table quite extensively before the wedding in order to prevent myself from fainting during the act. It went well – it was the same clergyman who married my parents in 1950 and who baptized me in 1953 and who was responsible for my confirmation camp that I went to as a 16-year-old. Although I did not practice religion, having being born into the Lutheran church in Sweden, I still felt comfortable going through the wedding procedure the way it is constituted within that church.
Three weeks after my SCI, I wanted to celebrate midsummer – which is a quite significant holiday in Sweden when we celebrate the light. There was no internet at that time and I couldn’t really get proper information regarding the degree of vulnerability that I was in. Was it ok to travel by car and boat and four-wheel drive over to the island, or did I need to go by stretcher? The problem was solved by recruiting the local municipal health authorities to fly me to my summer house in their helicopter – between their emergency call-outs. The deal was, that if the chopper didn’t have anything to do, they could fly me out to the island, which would take them 15 minutes, and if they got an emergency call during that time, I was comfortable with having them drop me off in a place where I could take an ambulance. A little unusual, but it worked throughout the entire summer. I was airlifted out of in-house rehab at the Karolinska University Hospital 12 times. That was an important element in my rehab, because after so much time at that house, I learned that you have to fight to acquire the necessary skills in order to reach the maximum level of autonomy given the level of your injury. I also learned how to appreciate independence. Even if it takes you two hours to get dressed and ready in the morning, it is so meaningful to your independence and integrity.
Please tell us about the founding of Spinalis including the inspiration and early challenges and early supporters.
Early on, after moving away from the hospital, I realized that it was going to be difficult to continue as an anesthesiologist. I tried for a couple of months – using a standing chair – but I realized that it was not such a good idea. At my first IMSoP conference in Edinburgh, Scotland in 1985, I met Sir George Bedbrook from Perth in Western Australia. It was an interesting meeting, because in the castle where we had the conference, the meals were given upstairs. Since there was no elevator, I was offered to take my lunch meals together with the Council. There were people like Alain Rossier and Paul Dollfus who were also confined to wheelchairs, and they served as a good source of information regarding where I could get training. Sir George, who was running the biggest unit in the southern hemisphere, took my wife aside and spent a considerable amount of time with her trying to figure out whether I could “survive” a year in Perth. She thought so. After that, the honorable officer of the British Empire Sir George Bedbrook came up to me and said, “you should come and train with me.” I went there and spent a year working Monday through Saturday and gained experience in SCI medicine and rehabilitation the hard way. It is interesting that quite a number of SCI specialist doctors from around the world have spent time training in Perth. For instance, Bill Donovan is a well-known person within the society who spent a year there ten years before I did.
Coming back from Australia, I realized that the municipal health authorities in Stockholm did not want to change SCI rehabilitation and treatment. It was not bad, but it could be much better. I had to find another avenue. I founded the Spinalis Foundation together with Jan and Märta Stenbeck. Jan Stenbeck was the founder of Kinnevik, which is one of the most prestigious, well-known and important industrial conglomerates that we have in our country. The constitution and the by-laws for Spinalis were signed by us three. He chipped in the first big chunk of funding, and the rest is history.
We learned how to establish medical operations in the format of a foundation. We worked hard to get a floor in a small hospital in the vicinity of Karolinska. We had our first outpatient visit on the 19th of November 1991. One of our missions was to make an inventory, which turned out to be the Stockholm SCI study. Before this, nobody had a clue about the prevalence – namely how many people with a broken neck or a broken back living with paraplegia and tetraplegia de facto live in the greater Stockholm area.
After five years of work in that setting, we were then asked to join the local municipality health care system. We did – even if we had to question that later on – but it eased the funding for our daily activities, salaries and rent, etc. The internal design of the first Spinalis facility was neck-twisting and mind-wrecking in a lot of ways. We had a dark Klein blue, ellipse-shaped corridor, with a very special kind of lighting, designed to provide a higher “coziness factor.” We didn’t want it to look like an institution. We had the tables supported from the ceiling in a lot of rooms to facilitate wheelchair mobility and we had a huge sauna. We were eager to comply with the needs of the patients in order to gain their confidence. We served breakfast when they came for their annual check-ups. We had fresh bread and attended to patients with great care. We offered the possibility for patients to be seen without making an appointment. And we grew. We were running cooking classes and had a lot of workshops, seminars and colloquials, both for staff and for our patients.
Please describe the work you have been involved with in the field of sexuality and fertility in the setting of SCI.
This leads us into elaborating on the next question: the work that we have done within sexology and infertility and the setting of SCI. I realized that it was quite awkward to extract semen using a vibrator and asking these patients to get up on an examining table. Also, the atmosphere in such an environment is far from “sexy.” So, what we did was redecorate one room in the back to turn it into a special room for education in sex and fertility. We had a nice, wide bed with mechanisms in order for it to be raised and lowered, and a canopy. There was a refrigerator and some nice lighting and music from a good hifi-system. After preparing this room, the question arose: what should we call this room? It was not PT, it was not OT. It was designed to be able to teach people to get back into a proper sex life, to practice sex and have intercourse. So, the room was called “The f-ing room.” After putting up a sign outside the door, the situation became a little bit tense after that weekend. After two days, a physical therapist took down the sign and put it on my desk. She said that it was too provocative to call it “The f-ing room.” Although the sign was not put back up, that room has always been called “The f-ng room,” ever since. The sign laid on my desk for two years until we moved.
This had some interesting implications when it came to selecting a principal investigator for the large Viagra study that was to be started in late 1994-early 1995. Somebody told Mary Maiton, who was the person at Pfizer who was responsible for this study: do you know that Claes Hultling has got a f-ing room? So, Ms. Maiton called me and asked me: is it true that you have a f-ing room? And I said yes. The next day, three people from London showed up at the unit and examined our facility. They thought it was a good idea that we became one of the centers in the multicenter study of sildenafil for patients with SCI. We had 169 couples in the study which lasted for 18 months and it became a cornerstone in our work in sexology and fertility.
Before this, we worked with Giles Brindley, Steven Seager and a handful of other people from around the world to figure out how to become better in procreation. My wife Barbro and I were newly married. We were informed that we could adopt children, but that we could not have children of our own. That led us to an intense, profoundly focused investigation on how to proceed if we wanted to conceive. We worked together with Brindley from 1986 and managed to set up a facility for patient care. The Spinalis Foundation purchased the first embryo freezer in Sweden because we wanted to optimize the conditions, as well as an intracytoplasmal sperm injection (ICSI) microscope from Nikon in Tokyo. The work we did in SCI fertility could probably fill a few hundred pages of writing, but the most important part of the story happened on the 27th of October 1992 when my son Emil was born. He is the result of successful in vitro fertilization where the semen was extracted both with a vibrator and Seeger’s electroejaculation equipment. We had been struggling for about two years before we succeeded, but it turned out to be the spark for intensive and successful work that has been going on ever since. I did the first vibrator stimulation ejaculations at the Miami Project back in 1988 at the Parkinson building, before Nancy Brackett and Chuck Lynn successfully took over one of the absolutely best fertility programs for patients with SCI in the world.
Please tell us about your experiences traveling in Africa, especially with regards to your involvement with SCI rehabilitation there.
In March of 2008, I was invited as part of an official Swedish delegation to visit Botswana and South Africa. We travelled together with two ministers from the cabinet, and we met people from government ministries in both South Africa in Pretoria and in Gaborone in Botswana. The Swedish delegation gave a one-day workshop on health economics and I was invited to talk about rehabilitation in a broader context. During dinner, I was seated next to the Minister of Health of Botswana, Mme Motsumi. She was a cardiologist who had received her education in India. I learned that the small country of Botswana, with 2 million inhabitants, had around 100 new cases of SCI per year, and that the vast majority died during the first 18 months. The question was then, would there be a possibility to do something for that group of people?
That was the spark. I returned home and approached the Swedish International Development Agency, who presented us with some possibilities to procure a part of the annual aid that the Swedish government, through SIDA, gives out to a large number of countries around the world. For decades, Sweden has been giving away 1 per cent of our growth national product and Namibia was a country in the region that was already receiving support, primarily for their children and women’s program, and also for prevention of HIV/AIDS.
We managed to get a Memorandum of Understanding and a Memorandum of Agreement with the Government of Botswana. In the fall of 2009, we signed these agreements and started on a small scale using three cubicles in an orthopedic ward. It was challenging to work with the orthopedic colleagues, because they considered Spinalis as “too privileged.” There was always a discussion on technical aid, materials and consumables and if we had some kind of special privileges to access that or not. It wasn’t until the fall of 2010, when we managed to get a “house of our own” on the campus, that we really got a kick-start. A small ward with 14 beds was allocated to Spinalis and we financed the refurbishment of that ward. We also provided extensive education and taught all the orderlies, PTs, OTs, and nurses about the common secondary and tertiary complications of SCI. We didn’t want to have the patients in bed, which was the usual pattern. We insisted on them having breakfast in their wheelchairs in the open areas/lunch room. The most difficult part was persuading the night shift orderlies to turn patients, even if they were asleep. Pressure wounds were and still are the most common cause of death among patients with SCI in this region.
After a year, a small delegation from Windhoek in Namibia came across the Kalahari desert and asked if we could provide a blueprint of SCI care at the Windhoek Center Hospital 8th floor, West wing. The rest is history. We did pretty much the same in Namibia. Today in 2020, both these units are functioning well, although they continue to require external support and some backseat driving. The next country on the agenda is Zambia, but the situation in Lusaka is much more difficult. It is a much poorer country and the population in Zambia is close to 17 million, whereas in Namibia and Botswana the populations are each in the two million range. We are on the verge of getting the bottom floor of a new building in Lusaka. If we succeed, it will be a dramatic change for that country in regards to the care of patients with SCI.
One of the obstacles in Zambia is getting access to proper instrumentation for spinal fixation. This instrumentation can cost about $2,000 USD, just for the plates and the screws, which is an extreme sum of money in Zambia. There are representatives from the instrumentation companies who are present in the operating room and they appear to be in “coalition” with the surgeons, who I suspect may or may be receiving financial incentives from the companies. One of my missions will be to ensure that there is access to less expensive internal fixation instrumentation in these countries. An absurd situation occurs today where patients who think that they can afford this surgical hardware are waiting on the ward in the University Teaching Hospital in Lusaka, while churches and family members are fundraising in order to raise $2,000 USD for the hardware. In the meantime, they are developing pressure ulcers and are becoming inoperable. Sometimes the patients who have undergone surgery have a longer and more difficult course in rehab then the ones who are treated nonoperatively, which is, of course, an absurd situation. I would like to make an effort to find much less expensive implants, screws and plates and to take up the challenge vis-a-vis the big companies that make as much money in Africa as they do in New York. The patients who cannot afford to pay for hardware and are treated conservatively (not even in traction) are discharged and usually die within 18 months, if not earlier.
Please tell us about your other international experiences, especially with regards to your involvement with SCI rehabilitation and how it has influenced your practice back home.
I have attended almost all IMSoP and then ISCoS meetings since 1985 and about 20 ASIA (American Spinal Injury Association) meetings during the same time period. I have visited a large number of SCI units in over 50 countries around the world and learned a lot. Mostly, I have been focusing trying to figure out what we can do in order to improve SCI care on all levels. I have spent a lot of time with the Miami Project, and the people in Denver have been our close friends for well over 40 years. I have spent time with the people at the Department of Veterans Affairs in Palo Alto during my time as a visiting professor at Stanford University in 2009-2010. We have been organizing some interesting workshops and seminars in Sweden over the course of 20 years – the Landsort Group – where we have invited and sponsored 25 SCI specialist physicians from around the world to spend three days focusing on future challenges. I have spent time in the other Nordic countries and right now we are organizing the Nordic Spinal Cord Society (NoSCoS) meeting in September 2021 in Stockholm at our site and the conference center next door.
I have spent time with my colleague Richard Levi to see what we can do to try to implement philosophical practice into the daily work with spinal cord injured patients, particularly during the early phase. I have worked with Professor Lou Marinoff from New York, who has written a very good book “Plato not Prozac” (the book is now available free of charge as a PDF file via the internet). Anyway, I have been picking up an awful lot of good knowledge in many SCI centers around the world and I have been eager to import good ideas to Stockholm.
What are the greatest obstacles and/or challenges that you have faced during your career in SCI rehabilitation?
The greatest obstacle that I have faced during these 36 years is persuading the governing structures in Sweden for healthcare on the necessity of centralizing SCI care. There have been many investigations done by the government in order to try to figure out what the ideal number of units in our country should be. Due to political rivalry, the law of Jante, and a number of “small chiefs” around the country who would like to have everything in their backyard, it has been difficult. We have 200 new cases of traumatic SCI and about 100 new cases of non-traumatic SCI per year, and they have been taken care of in about 25 places. That is far too many, and the number of cases per unit is very low. This has a huge negative impact on recruitment, on research, and on quality of care, etc. Finally, now there is a decision that there will be four centers in the country, starting next year in 2021. This will imply that perhaps the unit in Stockholm will have 150 new cases per year compared to the 70 we have today.
Please describe your current clinical, academic, administrative and other professional activities.
I personally work as the CEO of the Spinalis Foundation and clinically at the Spinalis outpatient unit. I also work clinically at the Karolinska University Hospital in their outpatient and inpatient units.
The present situation is that we have a unit with 56 inpatients, where we also have a mixture of other diagnoses apart from SCI. We have roughly about 40-50 per cent of the beds occupied with patients who have SCI at any given time. We have an outpatient clinic that serves 1,437 patients with SCI who are living within the greater Stockholm area constituting 2.5 million inhabitants. The outpatient unit was meant to take care of “everything,” but due to financial restraints and political decisions we now have only SCI-related secondary and tertiary complications. That can be a little bit vague, but we work within these constraints. We don’t have a psychiatrist anymore, but we have a psychologist. We have psychiatry around the corner if we need, and we are located only about 4-5 minutes from Karolinska University Hospital, which is the biggest hospital in northern Europe. We are not left alone.
We have a research department and Spinalis, together with Rehab Station, has produced roughly 20 PhD graduates through the years since the mid 1990s. The Spinalis Foundation lives integrated with Rehab Station Stockholm, which is “running the show.” We collaborate on a large number of activities. We are spending substantial money each year for conducting research in-house (perhaps small compared to an American budget), but we are still proud of the research that we can support focusing only on SCI.
Please tell us about the state of the Spinalis Foundation today.
The status of the Spinalis Foundation today is quite good. We can decide what type of research to pursue, or activities to support such as leisure activities, etc.
Please describe the state of SCI care in Sweden during the COVID-19 pandemic.
Although the vast majority of people in the world think that Sweden has been extremely badly affected compared to our neighbors, I think there were factors responsible for that, namely 30,000 people constituting families that spent their winter vacation in northern Italy and in Austria.
The work with spinal cord injured patients in Sweden during this time has not differed very much from the situation before the COVID-19 pandemic. The inpatient unit has been pretty much closed off to visitors and patients have been told to meet their relatives outdoors, but the ward work itself has not been particularly affected by the pandemic.
What trends do you see happening in SCI medicine in the future?
I believe that the work on regaining the ability to walk again will continue, even though I am not a person who has been focusing on that part. An enormous amount of energy, human capital and money has been and will be put into finding solutions with microchips and modern technology in order to regain the capacity to walk after SCI. Most people living with a SCI themselves don’t want to give priority to that kind of research. We have issues like pain, sex, bowel and bladder that we consider to be more important.
I regret that the focus on regaining independence and autonomy with the abilities that you have and live with has been less focused on. Attendant care has been more of an issue and I realize that people sustaining an injury with my level today will definitely live their life with attendant care, which was not the case in 1984. It is good that the option of attendant care is available, but it will decrease the independence, the integrity and the autonomy of my fellow brothers and sisters living with a C6-C7 injury.
The demographics will change drastically. When I had my injury in 1984 the mean age of onset of SCI was 23 years in my country, and now it is 41. We see many more elderly people sustaining a SCI through falls – which is the most common cause of SCI in my country today. This will put another type of demand on rehab and on inpatient and outpatient care, and that is a challenge that we have to acknowledge and address.
Tell us about your leisure and recreational activities.
I was a keen skier both cross-country and alpine before I had my injury. I tried hard to see whether there was a possibility to get back onto the slopes. I had close contact with Peter Axelson (founder of Beneficial Designs, a rehabilitation research and design firm; beneficialdesigns.com), from California previously and now Nevada. I also met with people in Denver a year after my injury and tried the Aroya ski sled – which was a really poor substitute for “real” skiing. It was not until the sit ski became available that skiing became a real sport to try to master. I tried hard with the people up in Snowmass, Aspen and Winter Park and I fell and I fell and I fell. I spent 41 consecutive days on the slopes before I acquired the technique to do proper sit-skiing. I did it with one ski, with the fat ski and with two skis in various types of rigs. I have even heliskied after my SCI, which was quite an experience. Four years ago, I injured my right shoulder, rupturing my supraspinatus and subscapularis tendons. We never managed to get my supraspinatus back and I still live with a fragile subscapularis tendon. I have stopped skiing and I sold my skis. I regret that I cannot get back on the slopes, but that is the reality.
Sailing was my other big sport before my injury. I managed to return to sailing after my SCI and qualified for the Paralympics. I participated in the Sydney Paralympics in the singlehanded keelboat 2.4 meter. Regrettably, sailing has been removed from the Paralympics due to poor work from World Sailing Federation primarily. Now, they are trying to get it back, but it is quite time-consuming work. When I am not racing, which I haven’t done very much of during the last 15 years, I spend time in my converted folk-boat. I have a 27 foot (8.2 meter) long simple folk-boat that I have equipped with a small toilet, a hot shower, a small diesel engine, a jib roller, lazy jacks and fully battened main sails. On this boat I can spend up to a week without being in my wheelchair, just sliding around. Besides this, I have a country house in the archipelago and I also have a greenhouse that takes some of my time.
Are there any places you hope to visit in the future?
If I have any special trips in mind once travel is permissible and practical again – I am thinking of Africa. I am longing and I really want to get my act together in primarily Zambia, as well as Botswana and Namibia. Apart from that, I don’t think that I need to travel that much any longer. I am 67 years old and I would like to continue to work for as long as I can, but I think I can do a lot of that on home turf.
Who is the person(s) you would most like to thank and why?
Persons that I would like to thank are Peter Wing in Vancouver, Dan Lammertse in Denver, and the late Sir George Bedbrook, officer of the British Empire, who taught me the basic skills in SCI treatment and who has always been an extraordinary role model for me in my life on the floor.
I would like to thank my wife Barbro, whom I have spent 41 years together, for letting me “goof off” and for understanding that I needed to push, stretch and go out on a limb, in order not to choke so to speak.