Are pedestrians happier than wheelchair users?

The differences are enormous – as Jürgen Pannek knows from over 28 years of experience. As urologist at Swiss Paraplegic Centre (SPC) he cares for persons who have suddenly been catapulted into a new life through spinal cord injury. Wheelchair users see him regularly for check-ups, some of them he has known for many years. The expert has therefore been able to observe that coping and dealing with the new situation as wheelchair user is not similarly easy or difficult for everyone.

“Enabling good functionality in persons with spinal cord injury is easier than a good quality of life”, the 61-year-old is convinced. In rehabilitation, various forms of therapy help to re-establish or improve functioning of motor, sensory or autonomous skills. The quality-of-life question, however, is more complex and manifold: “It is dependent on my factors and always only a snapshot.”

Jürgen Pannek has been chief physician of neuro-urology at SPC since 2007.

Jürgen Pannek completed the part-time program “Philosophy and Medicine” at the University of Lucerne. Health experts and leadership of hospitals and medicals institutes are given the opportunity to engage in and discuss philosophical questions. “I myself wanted to gain a new perspective on the effects of our doings on the affected persons.”

“I cannot compare my quality of life with the life of somebody else – because I don’t have their perceptual perspective.”

Jürgen Pannek

A good balance is required

Jürgen Pannek has always asked himself philosophical questions, however, he has never analyzed them in more detail. In his master’s thesis, he now examines happiness and discontent. He therefore took a closer look at a broadly spread hypothesis: The quality of life of persons with a physical impairment is lower than the one of persons without a physical impairment.   

The answer is...yes and no. Wheelchair user or not, certain events create temporary highs and lows: “Winning the lottery or getting a divorce both change the quality of life acutely but not chronically – both extreme situations approximate each other with respect to their effect on the quality of life over time.”

Empirical studies, however, also show that the quality of life of persons with spinal cord injury is higher than intuitively assumed by society. But it’s significantly below the one of persons without impairments. “A good balance between body, mind and soul plays a crucial role in how affected persons assess their situation”, explains Jürgen Pannek.

The situation is very fragile right after the accident or injury. People who have just suffered a spinal cord injury are hardly able to form an opinion about their situation. They are in a profound life crisis, “they are often devastated and have little to no perspectives on life”, says the expert. It takes them a long time before they are able to deal with their new situation and are able to regain a sense of meaning of life.

“I as physician have learned how to save lives during my university studies”, Jürgen Pannek explains further. But what does that mean? Simply preserve vital functions or re-establish quality of life?

.A life in wheelchair. Can I do that? Do I want that? During the first days, weeks and months there are particularly numerous dark and difficult moments. 

“If a recovery is impossible, affected persons often optimize their quality of life through participation and autonomy.”

Jürgen Pannek

Two lives, two decisions

The urologist has based his master’s thesis on two case studies. Two people he knows or knew personally. Their basic conditions were similar.

An 18-year-old man, who suffered an incomplete quadriplegia during a car accident. After his rehab, the trained mason retrained to become a software engineer, took over a software firm and today he is the CEO of an innovation company. He did further training on university level and is active politically and on various administrative boards. Furthermore, he plays wheelchair rugby and even participated in the Paralympics. “He evaluates his quality of life as being good; many things he experienced as wheelchair user he would not have achieved as a person without disability.”

A 21-year-old woman who suffered an incomplete quadriplegia after a horseback riding accident. After rehab, she tried to re-engage in her activities at the equestrian center as horses had been the center of her life. She also started to play wheelchair rugby. For her, however, a life in wheelchair, and, above all, no longer being able to horseback ride, lead to an intolerable loss of quality of life. Two years after the accident, she therefore chose medically assisted death.

Trying new things, lift off to new spheres – or hitting the ground of a tough daily routine? How a person copes with their impairments differs hugely from individual to individual.

Loss or opportunity

“Humans are responsible for themselves, their lives and their bodies”, says Jürgen Pannek. During his consultations it is not the goal to force an opinion on somebody. It is to support them or to give them information so that the person can decide for themselves.

If, for example, a cancer patient chooses medically assisted death at an advanced stage, it is comprehensible. If it is a person with spinal cord injury, there is usually less understanding as they do not die from the injury itself. “If this wish persists nevertheless, it is important to recognize if depression plays a role and if the affected person understands themselves.”   

“Quality of life does not stay the same for the entire life.”

Jürgen Pannek

These questions are difficult and hard. And what quality of life means is determined by everybody themselves in the end. Some people in wheelchair are simply tired: Their body needs resources to compensate for what it’s lacking.

In the end, it’s the personality that’s crucial: “Do you always only see the loss or also new opportunities?” Jürgen Pannek knows that it takes willingness to try something new – to seize an opportunity in certain situations and to adapt one’s life in a way that re-creates contentment.

Forum for ethical questions

At Swiss Paraplegic Centre there is a group of people who deals with ethical questions. The Ethics Forum discusses specific cases, but also ethical guidelines and collaboration. Jürgen Pannek takes part in the discussions as member of the senior management team and says: “The Forum should stimulate questioning of our doings and put them into an overall context.”

Is my life worth living? Can I do what I love to do? Reorienting oneself after a spinal cord injury is as challenging as returning back to society.

During his master’s thesis he was most surprised to learn how difficult it is to assess quality of life objectively. There are countless parameters that should be considered – and that constantly change. Functionality, integration into professional and personal life, health and satisfaction. «In the end everybody decides for themselves if their life is worth living.»

What would need to be changed to improve your quality of life? And what do moments look like in which you are perfectly happy?