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From now on, there can only be good days”

“

Ania Willman, Head of Care Science

at Malmö University, Sweden,

delivered the keynote speech

at EONS’Anniversary Event.

A cancer patient herself,

she offered a personal

view of cancer care

from her unique

perspective.

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17

Ania Willman began her presentation with the song ‘From now on, there can only be good days’. She said, “This song is about hope. When the worst possible has hap-pened, only one truth remains – that from now on there can only be good days.”

In August 2006, I suffered a relapse of malignant lymphoma.

This time the tumour was located in the throat. I had just started a course of cyto-static treatment when I was elected Pres-ident of the Swedish Society of Nursing.

My aim here is to focus on my expe-riences as a patient in the light of the way in which the nurse’s responsibil-ity is described in the nursing literature and research. One of the goals of nursing interventions is for the patient to experi-ence health. The health process is influ-enced not only by the disease and injuries but also by the individual’s attitude and choices in life.

Health is a subjective experience of meaning, preserved autonomy, integrity and dignity. It is based on the patient’s own perception of meaning. A sense of hope is vital for the patient’s well-being, thus the utmost care is necessary in order not to extinguish hope but instead to strengthen it. Hope means being convinced that there is meaning, and hope nurtured by close-ness and being together with loved ones.

Hope is crucial for health but the way in which we experience it is unique to each individual.

Great wisdom, experience and compe-

tence are required from nurses and others, to encounter each patient individually. I worked as a nurse for 13 years before becom-ing a teacher and researcher, and have now been a patient on several occasions.

Hope flew out of the windowMy life as a patient made me aware of the importance of the nurse’s way of carry-ing out the responsibility for managing patient-centred care.

The examples I will now present are from different care episodes and wards, but my experiences in the room, pictured here, made me start to reflect.

I was kept in isolation for four weeks in December 2006 in a room that meas-ured 10 by 12 metres. The final cytostatic treatment was intended to suppress the bone marrow and production of leuco-cytes and, once this had been achieved, I would undergo an autotransplantation of leucocytes. In the meantime, I was told to avoid infection of any kind. If not, I would become very seriously ill.

When I opened the door to the room I saw an exercise bike, a TV and a bed for relatives. The first thing I noticed was a picture with red leaves and a bunch of plastic flowers. To me red leaves signal death and destruction.

Hope flew out the window! In her 2004 doctoral thesis presented at Åbo Academy University, Synnøve Caspari writes that there is a relationship between health, well-being and the aesthetics of one’s surroundings, and that professional care

demands an awareness of and attention to the aesthetic dimension.

Research has also revealed that patients choose to keep a low profile – I wiped away my tears and my husband and I hid the picture and hung one of my own instead.

However, it triggered many thoughts about the effect of the environment on patients. In the mid-19th century, Flor-ence Nightingale wrote about the impor-tance of the environment and fresh air for the sick person as well as the necessity of airing and keeping the sick room clean. In my isolation cell, I was not allowed to open the windows and the door had to remain closed. Imagine how that feels when you are nauseated, have vomited and need to open the windows to get some fresh air!

What upset me the most was staff members who stood in the anteroom with the door slightly ajar and spoke to me, not with me.

I have read articles on ‟evidence-based design where the assumption is that the design of the environment should sup-port the activities to be carried out there. In my room there was no place for books, embroidery or skin care items, which had to be kept in bags on the floor.

Symbols of isolationIn the literature, fatigue is the symptom most commonly mentioned in relation to patients with cancer. Its characteristics are tiredness and lack of energy. How-ever, this symptom is accentuated by the

Ania’s presentation featured many photographs of the oppressive room in which she spent four weeks in isolation during December 2006.

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healthcare organisation. Responsibility for patient-centred care includes helping the patient to conserve their energy. Research has revealed that patients with cancer who have been treated with cytostatic drugs experience an average of 10-14 symptoms.

The initial phase is dominated by worry, lack of energy, dizziness, tearful-ness and difficulty sleeping. Research has demonstrated that additional symptoms are pain, irritation, nervousness and dif-ficulties concentrating. Optimal symptom control requires the nurse to educate the patient about symptoms and how to pre-vent them, as improved control leads to increased treatment effectiveness.

The symptoms become stronger over time; hair loss, a pricking sensation in the hands and feet, balance problems, weight gain due to cortisone, skin changes, wounds that won’t heal, nausea, constipa-tion, coughing, a changed sense of taste, loss of appetite and anxiety.

All these symptoms made it vital to con-trol, prevent and manage fatigue by means of routines for exercise, brushing one’s teeth, breathing exercises and massaging the skin with ointment. The board with my schedule hung at the foot of my bed.

Towards the end of the treatment I cycled about two minutes per day – but at least I cycled, which I thought was the main thing. However, I had the impres-sion that nobody else considered it impor-tant, because I received no support when

Great wisdom, experience and competence are required from

nurses and others, to encounter each patient individually.

Ania during her treatment

Ania with her doctoral

student at the time,

Peter Stoltz

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I was too sick to perform the routines. A Swedish thesis by Margareta Anders-

son has established that the patient expe-riences a lack of security when his or her sense of autonomy and dignity is violated.

The nurse’s responsibility for patient- centred care comprises supporting him or her to maintain habits and routines, plan-ning and managing the care in such a way as to strengthen the patient’s autonomy and involvement. According to Imogene King’s theory, the patient will be satisfied when there are clear care goals and the patient and nurse agree on how to achieve them. Perhaps I was too sick to notice, but I was not aware of any care planning.

Improving information and education Nurses constitute the largest group of professionals within Swedish cancer care. They provide treatment, thereby saving lives. New targeted cancer ther-apy is combined with traditional meth-ods such as radiotherapy, cytostatics and surgery. The nursing methods employed should, as far as possible, be based on evidence. Guidelines, for example for changing peripheral venous catheters (PVC), must be adhered to. Despite this, I had to argue with staff to have my PVCs changed.

Although nurses make huge efforts, there are still many areas such as informa-tion and education that can be improved. A study of patients with prostate cancer

revealed that 50% had knowledge of the disease, 36% failed to correctly indicate the site of their tumour and 34% did not know that radiotherapy can lead to burns. I’m not implying that the nurses did not inform the patients, but that the latter either did not hear or understand.

Rosemarie Rizzo Parse’s theory of ‘humanbecoming’ states that a person who is allowed to live in accordance with his or her values enjoys health.

Carrying out research and supervising my doctoral students were activities that I valued highly. When I received my first cytostatic treatment there was one nurse who understood this and provided a quiet place. I didn’t disturb the other patients and I could receive and supervise my doc-toral students. That nurse strengthened my experience of health.

I envisage two challenges for future care – one concerns the best way in which to man-age and apply the large amount of scientific knowledge that is produced, and the other is how to enable patients to participate and be actively involved in their own care.

Use of scientific knowledge and informa-tion is not a new phenomenon in health-care. However, what is different today is the constant stream of new research find-ings and the technical advances that have

made it possible to disseminate and retrieve this information. One strategy could be to develop decision support documentation that can assist clinical staff in individual care situations. Examples of such docu-mentation are clinical guidelines, care pro-grammes and standardised care plans.

The fact that scientific knowledge is applied more systematically does not guarantee that patients feel secure or are spared exposure to risks or errors. It is necessary to strengthen the patient’s status within health care and, in order for patient safety work to advance, the knowledge of how to actively involve the patient must be increased.

It takes courage Patients are, among other things, able to observe, remind, question and avoid risks. A prerequisite for active involvement and participation is that a relationship, based on trust, exists between patient and carer.

My message is that it takes courage – courage to adopt the patient perspective, courage to listen to the patient’s voice and courage to make changes that allow patients and their relatives to play an active role. An additional message is that nurses must take full responsibility for patient-centred care.

Ania Willman with EONS

President Erik van Muilekom