Research Perspectives
A meaningful life is central to Positive Health An interview with Dr. Machteld Huber
Dr. Anna Towers and Pamela Hodgson sat down with Dr. Machteld Huber at the Fall 2019 National Lymphedema Conference, in Toronto, Ontario for an exclusive interview. The article below is edited and adapted (with permission) from its original transcription for ease of reading, continuity and brevity. Can you tell us about your background, your philosophy of care, and how you came to think about health in this way? Dr Huber: I am a general practitioner, and from a post-war generation, so the war was relevant. In my interactions with people who had terrible experiences, I wondered: how can you go through that and still remain healthy? At a young age, I was already interested in what I would now call resilience. Between the ages of 30 and 35 I had four different serious illnesses, the final one being cancer. Being a patient myself taught me that medical knowledge is wonderful but is only one component in healing and health. There are different parts of the personality, different parts in life, which have a very strong supportive influence. If you really address those both during your illness and afterwards, it enhances your recovery and your wellbeing. With the first illness I was surprised that I was not taught that in medical school, and so with my subsequent illnesses I used myself as a research subject to study being a patient. Once I was mostly recovered, I decided I wanted to work on that because if we address the situation more broadly, illness integrated
into a human being as a whole, you can really enhance well-being and real health. We understand you have a bachelor’s degree in philosophy, and an interest in nutrition as well? Dr Huber: Correct, I have broad interests. When I decided to go on this path of broadening the definition of health care, I decided it needed to be science based, or it would not be accepted by the medical profession. Besides my research, I worked with very damaged people (e.g. drug addicts and people with war traumas). I wanted to observe if the laws of health and resilience that I thought I had found in myself would work for them as well. I was very impressed with how much you can accomplish with these very damaged people. Please explain what your earlier research work entailed. Dr Huber: I was working at a multidisciplinary research institution where they did a lot of research on sustainable agriculture; different production systems and resulting effects on plants and animals. Genetically identical organisms, depending on how you raise them,
Anna Towers MD, is a palliative care physician and Director of the Lymphedema Program at the McGill University Health Centre in Montreal, Quebec. She was a founding member and co-chair of the Canadian Lymphedema Framework from 2009–2016 and still sits on the Pathways Editorial Board. Pamela Hodgson RMT, MSc, is a retired lymphedema therapist who worked in private practice in St. John’s, NL then at the McGill University Health Centre Lymphedema Centre with Dr. Anna Towers, where she participated in both research and clinical care. She has been involved with the CLF since its inception.
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produce completely different adult plants and animals. These serve as nutrition for human beings. The defense system of the plants is in the micronutrients. When you fertilize plants intensively, you get enormous growth, but the plant’s micronutrients are diminished since they are protected with pesticides rather than their natural defense system. Given that micronutrients are important for food quality, could it be that if you fertilize less, and subsequently have fewer crops that these plants would be more nutritious? I worked on this for several years, conducting several research projects. In one very big study for the Dutch government, we studied multi-generations of animals, feeding them with either one production system or the other. Everything else was identical and all the food was nutritious according to the standards. Although all the animals were found to be healthy, (even though one group was slightly heavier), we couldn’t decide which group was actually healthier. But when we induced illness in the animals (a standardized challenge resulting in a kind of flu), and subsequently studied their recovery, the difference became apparent in their metabolism and immune system. One set of Ly m p h e d e m a p a t h w a y s . c a 5
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Health as the ability to adapt and self-manage in the face of social, physical and emotional challenges.
animals (group A) recovered much faster than the other. Then the question came, is this group of animals healthier or not? When I asked a group of professors/scientists which animal they preferred to be, nearly everyone said they wanted to be animal A—which had recovered faster. And when it turned out that animal A had eaten organically produced food, they were confused. Can we now say that this animal is healthier? Not according to the definition of the World Health Organization (WHO). So this is how I came about working on this concept of health. In what ways then, does your concept of Positive Health differ from the World Health Organization (WHO) definition? Dr Huber: We didn’t use the term Positive Health right away. First we had this new concept of health. From my animal study we had found resilience, but I could not call resilience health because the WHO definition said that health is a state of complete physical, mental and social well-being. They had formulated it very idealistically, but that doesn’t connect to normal life. And resilience, being weak and getting stronger, doesn’t fit because the definition is so static. In 2009 the Government of Holland asked me to organize an international conference to discuss: what is health? We discussed all kinds of perspectives and came to this description: health as the ability to adapt, (which is resilience) and self-manage in the face of social, physical and emotional challenges. We found it very important that you have this feeling that you adapt in your own way. So, we have the physical, and the emotional-mental, and social (the same domains as the WHO), only not static. But as we are always challenged in new situations, our definition of self-management 6 Ly m p h e d e m a p a t h w a y s . c a
means finding your own answer to that. We stated the concept not ‘health is’ but ‘health as’ the ability. And we didn’t call it a definition—as a famous sociologist advised us that by calling it a definition, you make a demarcation between what health is and what it isn’t’. Instead, we went for a general concept, which is a characterization; more vague, but a kind of working direction. So how do you go from there (your concept of health) to a more dynamic self-agency and to the concept of Positive Health? Dr Huber: Well, after the initial conference, the government requested a research project in the Netherlands to investigate support for this description and ways to operationalize it. The Six Dimensions of Positive Health Bodily Functions
Daily Functioning
Mental Functions & Perception
Social & Societal Participation
Spiritual/ Existential Dimension
Quality of Life
Example of a completed self-assessment
I contacted many different groups: patients, medical doctors, specialists and general practitioners, physiotherapists and nurses, insurance companies and policy makers. I conducted focus groups and interviews with 140 people. I asked: Do you support this concept? What do you think is positive and what is negative? What to you are indicators of health and do your indicators connect to our concept? I came home with 556 very broad concepts/indicators of health and we categorized them in different ways. And that’s your spider web? Dr Huber: Yes, we categorized everything into these six dimensions or categories, covering 32 words altogether. In my original publications we called it six pillars but now
we call it domains (bodily functions, mental functions and perception, spiritual /existential dimension, quality of life, social and societal participation, and daily functioning). Then with these 32 words we created a questionnaire where 1,938 participants responded. The first question was “Do you support the concept? What’s positive and negative?” And that was completely supported. Secondly, “How strongly do you think these 32 words are connected to health?” And what we found with all the responses was that everybody connected the physical to health, but in the other five domains there was a big opposition of minds. For the patients, all categories were connected to health, whereas for the health professionals, policy makers and others it was primarily bodily functions. I had big support for the first concept: ability to adapt and self-manage. In the elaboration or operationalization I had strong opposition because the doctors and policy makers said one thing, and the patients said another. In Holland everybody says we place the patient centrally and that was our argument: to say that you need to take seriously how patients view health. It’s about life as a whole. That is what they literally said. So it was really a choice to take it quite broadly. But I needed another name. I chose Positive Health because it connects to the positive psychology of Seligman1, although it is broader than that. The most important reason that I chose Positive Health is that when I studied the minutes from when the WHO was founded in 1948, I found a discussion about ‘positive health’ that they considered using. They already had physical, mental and social and they wanted to call it positive health but in the end they didn’t. But I thought, this is good company. I call this broad approach Positive Health with capital P and capital H, to indicate our interpretation including the six domains. In my interviews, people told me: don’t make health a new goal, but think of health as a means to a meaningful life. Several people (sociologists, psychiatrists, pediatricians) said that we should get away from just focusing on the medical side. What is the new aim then? Dr Huber: What is your purpose in life? That should be central now. We are so far advanced Spring 2020
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now in medical knowledge, having a meaningful life should now be the aim. If you have a disease, can you still live a meaningful life? I adopted that into our approach. To help people work with it we invite them to evaluate their life domains. And then we teach the health professional that they should also aim for the person to achieve or maintain a meaningful life. The professional should ask: Would you like to change something, and what would that be? And with that we ask: what is important in your life? Not what do I as a professional think is important but what does the person want? That is the biggest change in the approach of the professional and the difficulty in training them to have this ‘different conversation’. They are so prone to advise immediately and say what the other has to do. But we need to learn to listen and to ask what is important to you: the patient. Only then will people start to speak about what is really important for them. And if it is possible to help the patient to really engage with what is most important to him or her, then you find that people start to become active, become happier, and experience better welfare—and their physical condition often follows. How do these ideas and concepts relate to lymphedema as a chronic condition; how should we deal with treatment and what guidelines should we use? Dr Huber: People ask, should we not treat disease anymore? I say of course you need to treat disease! I have great respect for what medicine can do! It is very good to treat the body but it is very important to also pay attention to the human as a whole. That is what we try to add. My presentation at the National Lymphedema Conference had a take home message: “Referring to the spider web of Positive Health, how do you evaluate the different domains in your life and what would you want to change? Then start doing it!” So the question would be to the patient or client: how would you assess your state of health looking at the various domains Dr Huber: Yes. And then the next question is: What is really important to you? What is your dream? Can you put your dream and your purpose in life central and really focus 8 Ly m p h e d e m a p a t h w a y s . c a
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on that? Of course your condition is still there. But what we find is, that if people really place this purpose central, the condition is easier to bear. How would you tie this in with public health care spending? Dr Huber: In the Netherlands, presently insurance companies just pay related to the physical aspects. But now we have doctors that start to co-operate closely with the social domain and maybe with the spiritual domain. When doctors co-operate with the social domain they save money, because many physical problems really stem from social problems.
this concept connects to their original idealism and enthusiasm that led them to choose this profession, even though medical practice leads you far from this. But more and more colleagues are starting to adopt this. In such change processes you have the early adapters and we are now reaching bigger groups. How about the government? Dr Huber: They see that this is the future but they have difficulties because the whole system is focused on disease with 97% of the budget going to disease spending. Like a mammoth tanker ship, it takes a long time to change direction.
So if one’s concept of health is broader and integrating financing broadly, then ultimately you have a more rational way of spending health care dollars. Dr Huber: Yes. What we notice is that a colleague of mine, who works most intensely with this concept, saves the insurance company lots of money. As a general practitioner he refers 25% fewer patients to the hospital, but the local hospital then runs into financial problems. So the question is: how should the hospital be financed? If the hospital just gets money because of illness (referrals) then things like that oppose a change.
And what about international interest? Dr Huber: There is a lot of interest internationally as well. There is a book out already in Japanese about it. I trained physicians in Japan. A colleague is now training in Iceland because Iceland wants to adopt it. Belgium has already adopted it and Germany shows great interest. People really think it is good for the future. So you will understand that I am a grateful person at 68!
Your ideas are very revolutionary, because they affect the funding mechanisms and involve social dynamics and education of health care professionals. Dr Huber: I agree. We have the tool (spider web) for adults; we designed (involving the target group) a spider web for children, for adolescents and for people with language problems (so it can be read to them). My ideal is that it will be integrated into the education system, so school children will become familiar with taking responsibility or seeing possibilities to improve their own wellbeing in all these areas. That is what real prevention is, to learn from an early start to be healthier.
Dr. Machteld Huber’s own experience with illness led to her discovery that she could actively and positively influence her recovery. She developed a new, dynamic concept of health, which she elaborated into the broad concept of “Positive Health” with six different dimensions. Huber was named the most influential person in Dutch public healthcare in 2016. To support practical implementation of this patientcentered approach she founded the Institute for Positive Health (www.iph.nl). LP
What has been the response from health care professionals in your country? Dr Huber: It is quite well received in Holland. The federation of medical specialists has a vision for 2025 and this thinking is central. More and more physicians are discovering that
Thank you for taking the time to meet with us and share your concepts with our Pathways readers!
Reference 1. Seligman, Martin EP. Positive Health, Applied Psychology: an International Review, 2008,57, 3–18, doi: 10.1111/j.14640597.2008.00351.x Spring 2020
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