People have the right to take responsibility for their lives as much as they want to and they have the right to receive all the information they need in order to do that. They are the experts in their own lives and being a patient is only a minor and hopefully temporary role.

The word ‘patient’ implies patience and passivity. However, since other terms such as client, customer, consumer and user also have drawbacks and seem unsuitable the word ‘patient’ has been retained throughout much of this text, with an awareness of its limitations and without supporting its passive connotations. It is important for health care professionals always to stay conscious of the fact that a person is much more than a patient. People have complex lives beyond the limited role of receiving health care, where they are required on a daily basis to make decisions affecting their life and well-being. Since they manage to fulfil these demands in all other areas of their lives, they can be considered competent to do the same in relation to their health.

Self-responsible patients are fully informed about their health and their options for health enhancement and disease care, when needed. They feel empowered to ask all the questions they need before making a decision. They use the experts as a source of information and support. They will not tolerate a therapeutic relationship where they feel patronised or ignored but will seek out the health care professionals who are willing to co-operate with them as partners. They do not try to replace the experts but they utilise their expertise to enhance their own discretion. A parallel would be to listen to the opinion of a car dealer but to make the final choice oneself of which car to buy.

To achieve this vision of the self-responsible patient, both patients and health care professionals have to evolve beyond their current roles. The implications of this evolution affect all areas of our society – right back to the school curricula which would be required to provide the relevant knowledge and empowerment to pupils.

The Present Situation

As a consequence of the reductionist model, old-style doctors have all the power and the responsibility, while patients suffer from disempowerment and feel like helpless victims. The science of medicine has become an enormous maze of technical terms, which is a language unto itself and completely removed from the patient. The doctor has become the omnipotent life saviour who needs to be blindly trusted. This may attribute to them prestige and power but also responsibilities which are, at times, inhumanely demanding and stressful.[1] In turn, the system has created passive patients who require health experts to rescue them when they get sick. This disenfranchisement has a profound effect on patients’ ability to take responsibility for their own health. If they are seen as playing no part in the creation of their disease processes, then they cannot contribute significantly to their own health or healing processes. They become victims of intangible or unknown outer causes, living in a hostile universe which is out to get them.

Patients are, however, becoming increasingly less patient. Many want more information and often more involvement in their health care. This new development has found its expression in the various patient’s charters which have been drawn up in the UK in the last few years.[2] These emphasise the right of information, choice and care with respect for the whole person. It is important that these charters have been written. More important still is that the values represented will affect the daily care provided and that patients will find support and empowerment for being active partners in their own health care, for making informed choices about interventions and taking active steps to improve their health with self-care.

In a state of illness or weakness, people are often not in touch with personal power and confidence. It depends very much on the attitude of the attending health care professional how fast they regain their sense of autonomy and self-responsibility, or whether their sense of helplessness is reinforced. Health care professionals who are interested in partnership with patients will provide as much information and choice as possible. They will support patients to make up their own minds, giving them time and space, and possibly the opportunity to talk it over with somebody else.

In the early stages of patients’ self-responsibility they may need a considerable amount of support from the experts, but the long-term goal is for them to achieve autonomy. This is a process during which the individual patient determines the pace. Reclaiming self-responsibility is an essential aspect of the healing process.

Challenges to Self-Responsibility

The ideal of integrated health care asks a lot from patients: the willingness to become active partners in their health care and to make healthy choices in their lives, which does not always come easily, but in the longer term produces a win/win situation for both patient and health care professional.

The following scenario exemplifies the implications of the self-responsible patient:

Every person holds their own ‘health book’. It contains all the information regarding their medical history, treatments received, health assessments and experts reports. During any contact with a health professional, notes will be entered in the book, as well as examination results. At any time the person may add comments and observations, which may include disagreement with the experts’ picture. Their health records are their personal property and responsibility.

This is a long way off from the present situation – until recently the folder containing patient notes had printed on it the words ‘Not to be Read by the Patient’. Many patients are not ready to take this step towards self-responsibility as Cornelia discovered in her practice when she tried to introduce the health book. She found that patients would forget to bring it to the consultation. She had conceived the idea during a visit to Papua New Guinea where she observed villagers bringing their own health records to the monthly clinics, a system which seemed to work well. It is interesting to note that it worked in Papua New Guinea, where there has been no health system before, whereas in Britain patients have been so disempowered by the existing system that they find it hard to take up the reins even when offered them. It is not that British people are incapable of keeping records – all car owners produce MOT and insurance certificates each year when they apply for their car tax – it is simply that we are not programmed to take the same responsibility for our health.

Society shapes medicine, as well as medicine influencing the values and paradigms of society. People do not necessarily want to implement the changes required to improve their health and well-being. It is not only ‘the system’ which feeds drugs to the patients but in many cases the patients themselves who want the ‘quick fix’ – the antibiotics, painkillers, or antidepressants to remove symptoms.

The Concept of Victim Consciousness

Victimisation is one of the most powerful pathogens in our society and is highly contagious. It creates disease on a physical as much as on an emotional level. People are victim to many things: their social class, their parents, their biology, their economic reality, their life experiences. Illness happens to them – they are struck down by it. In the position of victim they do not have the power and resources to contribute to the solution, to help themselves or to improve their life quality. They have to suffer ill fate, give themselves over to the hands of experts to get fixed and if the experts cannot help, they are hopeless and doomed to a limited and unhappy life.

On the larger scale victim consciousness creates ‘disease’ in a society in the form of dependencies and expectations that one will be provided for, which further suppresses individual initiative and creativity. Globally it causes the utter deprivation of whole countries dependent on foreign aid, which never can give back what they lost in the first place: sovereignty, pride and an intact social and natural environment.

‘Creating Your Own Reality’

Within the holistic view of self-responsibility has evolved the concept that ‘we create our own reality’ – a maxim which provides a clear antidote to victim consciousness. It can be a source of great empowerment and liberation for individuals to view themselves as directors as well as actors in life’s play. Acknowledging the director’s role is often a great step towards healing and happiness.

There is, however, the possibility that distortions of this concept are applied to illness. Such distortions stem from an oversimplification and can lead to an unkind and uncompassionate attitude towards illness, in the sense of ‘you have caused this yourself, ‘it is your fault’, or ‘what have you done wrong to manifest this?’ ‘You have created this’ in its simplified form is cruel and separating. Tempered with understanding and compassion it becomes an enlightening alternative to the reductionist paradigm.

Only when illness is considered as a result of a person’s history and life circumstances and an expression of a soul’s journey through human incarnation, can any judgement on disease be withheld and people be supported in a loving and compassionate way, as well as encouraged to do what they can to empower themselves, make changes in their lives and adopt habits of increasing self-care. The concept of the self-responsible person is a very important step to self-empowerment and is essential in many people’s healing process.

A Personal Experience

This incident illustrates the negative potential of the old paradigm and highlights possible new ways forward with co-operation and respect on all sides.

Cornelia was 36 weeks pregnant when she went for a routine check-up with the hospital consultant. She and her busband were planning a home birth. In the previous consultation at 15 weeks, the consultant made it clear he was unhappy about Cornelia being exposed to the risks of birth in circumstances where he could not provide the help he has at his fingertips in the hospital. However, he was willing to let them have their way provided that everything was okay’.

The trip to the second appointment was stressful. Having left a bit late, they got stuck in traffic and Cornelia’s husband was late to deliver an important document to the solicitors before they got to the hospital. It is little wonder that on examination
the obstetrician found that Cornelia’s blood pressure had increased since the previous check. It was now 140/95. He said that she should stay in for observation, as ‘the only important thing is that you have the baby, isn’t it?’ Cornelia found herself bobbing her head up and down, agreeing with him. She omitted to tell him that the measured BP was what she had quite frequently before the pregnancy, or that they had been stressed prior to the appointment. Even the husband and the birth attendant, who was with them, were struck by the authority of the consultant’s words and agreed to his plan.

In the event, the consultant changed his mind and agreed that they could go back home, have the community midwife measure the blood pressure again and only if it was the same in three days should Cornelia be admitted. Once they were home and thinking straight again, they were amazed that they had agreed to his proposal at all. They set about recovering their original vision, shaking off the fear and disempowerment with which they had been infected by both the doctor and the system.

In retrospect they realised how much they had been hypnotised by the certitude of the consultant. In his presence, Cornelia had not only lost her wits but also had delegated to the expert the power to decide what had to happen. It was a sobering experience for her, that even with all her background knowledge as a medical doctor and with the reinforcement of husband and birth attendant, she couldn’t resist the mesmerisation of the fear concept and the ‘just-in-case’ provision.

The community midwife attending to their pregnancy helped them to reclaim their power by holding the perspective that birth was a physiological process of which any healthy woman is capable, without the need for holding onto the worst case scenario. Cornelia’s blood pressure complied, and they proceeded with their original birth plan, holding, of course, an awareness of the risks involved, but without being dominated by it. The birth went smoothly and was attended by the midwife. The GP, who was also present, took a back-seat role, in fact she ended up taking photographs of the birth, which they had been keen to document.

References:

  1. R P Chaplan, Stress, anxiety, and depression in hospital consultants, general practitioners, and senior health service
    managers, BMJ, Vol 309, 12 Nov 1994; p1261-63.
    British Medical Association, Stress and the medical profession, BMA 1992.
    Julie Coulson, Doctors under stress, BMA News Review, April 1996.
  2. The Patient’s Charter, NHS in Scotland, Scottish Office, 1991.
    A Charter for England – The Patient’s Charter and You, Department of Health, 1995.
    Citizen’s Charier, Patients Charier for Wales, 1995.
    Code of Practice on Openness. NHS in Scotland – Management Executive, Scottish Office, 1995.