Cancer in Young Adults: Through Parents’ Eyes
4. Involvement in medical decisions: who owns the knowledge?
Many of the issues raised through the research relate to the confusing and problematic nature of the sharing of medical information. Again life-stage is crucial, when parents have until relatively recently been used to making medical decisions on behalf of their son or daughter, usually in relation to minor illnesses, to relinquish this control over cancer can be traumatic. Brannen Dodd, Oakley and Storey (1994) document the trouble that mothers in particular, have in letting go of the ownership of their children’s’ health and health related decisions. So once again we can see the exacerbation of the problem in relation to life-stage and the struggle for control and ownership of medical information and decisions that are a part of the understandable bid for independence and the young person’s legal right.
While in some cases health professionals appear to have handled the situation with sensitivity, this clarity and sensitivity does not seem to have been the case other examples from the research. The legal situation is clear but it is also clear that it is on occasion negotiated between parents and medical staff. It is difficult to make any recommendations about the ‘best’ way to handle the situation, but we have seen examples of confusion, which need to be clarified. Perhaps, where appropriate, a frank discussion between all parties at an early stage establishing ground rules for communication is needed. On the other hand it may be necessary to ‘play it by ear’ making judgements as the illness and its treatment develop. Thornes (2001:55) argues that the family of a young person should be included in the care plan (with permission) to a greater extent than is usual in adult services as even after the age of majority many young people will be tightly linked to the family both in practical and emotional terms. However, the key must be communication between medical staff and the young adult, between young adults and their parents and between the parents and the health professionals.
Much work has been carried out on the importance of ‘awareness’ in relation to dying patients. Glaser and Strauss (1965) who analysed the social actions engaged in by health professionals found various ‘awareness contexts’: ‘closed’ where the doctor and family conspire to keep the truth from the family; ‘suspicion’ where the patient ties to extract the truth; ‘mutual pretence’ where both sides know the patient is dying but no one mentions it; and ‘open’ where there is open communication between the patient, the family and the health professionals (Walter 1994:31). As Walter says, since this study there has been a major movement away from the belief that keeping patients in ignorance is desirable to the belief that an ‘open’ model assists patients in making decisions about their remaining life.
The following studies charted by Clark and Seymour (1999) show that while significant advances in the field have been made, there are still areas of concern in relation to practice. Field (1989), while demonstrating that practices have changed in relation to the disclosure of terminal illness since the early work of Glaser and Strauss (1965) suggest that nursing in some settings still encourages pretence.
It appears that while there is much debate in this area and an apparently increasing acceptance of the importance of ‘awareness’, practice will vary according to the social setting and individual practitioner’s model and world view.