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Influences on patient participation and decision-making in care

Dr Saras Henderson, BSc (Nursing), MEd, PhD, RN, RM.

Senior Lecturer, School of Nursing and Midwifery, Curtin University of Technology, Western Australia. Dr Henderson is now on secondment as Project Officer, Scope of Nursing Practice, at the Nurses Board of Western Australia, East Perth, Western Australia

The need for patients to participate in and make decisions about their care has gained consensus among health professionals in recent times (Kravitz and Melnikow, 2001). This need has been fuelled by socio-political, ethical and empirical views. There is pressure from consumer lobby groups for health professionals to change from holding a paternalistic view of care to one in which there is patient autonomy and empowerment. Connelly et al (1993) claim that, by promoting empowerment, doctors and nurses can encourage patients to choose and negotiate about their care and take the lead in decision-making.

 

The need for patients to participate in and make decisions about their care has gained consensus among health professionals in recent times (Kravitz and Melnikow, 2001). This need has been fuelled by socio-political, ethical and empirical views. There is pressure from consumer lobby groups for health professionals to change from holding a paternalistic view of care to one in which there is patient autonomy and empowerment. Connelly et al (1993) claim that, by promoting empowerment, doctors and nurses can encourage patients to choose and negotiate about their care and take the lead in decision-making.

 

 

The Patients’ Charter advocates patients being informed about their rights, being involved and taking responsibility for their own decisions (Saunders, 1995). This is congruent with the UKCC’s nursing documents for professional practice and its clinical governance framework (UKCC, 2001). Within this framework, nurses are urged to deliver quality care in which patients are the primary focus and decision-makers.

 

 

Today patients are better informed about their health problems through accessing the Internet, television and other media, where a myriad of technical, procedural and treatment options are regularly discussed. Thus, there is a perception among health professionals that patients may be less inclined to leave medical decisions entirely in their hands and that it is good form to promote patient participation and decision-making (O’Malley, 2001). Given this scenario, professionals are now encouraged to engage in behaviours that promote patient participation. This pro-participatory stance is not only valued by health professionals at the macro level, through health policy endorsement, but also at the micro or ward level.

 

 

The literature
Although the literature has many definitions of patient participation, Brearley’s (1990) definition seems to capture fully its meaning. Brearley writes that patient participation involves: ‘Being allowed to become involved in a decision-making process or in the delivery and evaluation of a service, or even simply being consulted on an issue of care such as activities of daily living, pain management or treatment options.’

 

 

This definition seems clear enough to understand; but how easy is it for nurses to ensure that patients, if able and well enough, make decisions, evaluate the care or select treatment options? Who should take responsibility for it, the patient or the nurse? Should nurses take the blame if patients choose not to participate? Studies indicate that, when patients contribute to decision-making in hospital they attain better health outcomes, such as greater satisfaction with care, a sense of control, decreased vulnerability and a faster recovery (Kravitz and Melnikow, 2001). It is not surprising, therefore, that nurses themselves advocate patient participation as a rule rather than an exception (Cahill, 1996). Some literature is even critical of nurses who do not encourage patient participation, indicating that this is contrary to best practice in nursing (Biley, 1992; Cahill, 1996; Waddell and Petersen, 1994).

 

 

A literature review was conducted using various electronic databases such as Cinahl and Medline to glean information on the topic of patient decision-making. Key words, such as ‘patient participation’, ‘decision-making’, ‘hospital care’ and ‘medical decisions’ were used. Information was sought for the past 15 years. Literature showed that, even though several authors have attempted to provide an overall picture about patient decision-making, there is a dearth of information on the process and reasoning patients use with regard to participation and decision-making (Lloyd, 2001; Montgomery and Fahey, 2001).

 

 

According to Sainio et al (2001), patient participation is a highly complex issue with varying layers of decision-making embedded in it. These authors report that patients differ in the way and extent to which they want to participate in their health care. For example, some patients may make a conscious decision to take a passive role in decision making while others may want to be treated as partners in care (Chewing and Sleath, 1996). One can also argue that, if the current thinking in nursing is to provide individualised patient-centred care, then the choice of some patients to defer their decision-making to nurses and doctors is entirely appropriate. Despite what is known about this topic, the experts advocate that more research needs to be conducted in this area. This is so that health professionals can gain a balanced understanding of its complexities rather than take the view that it is good for all patients, if able, to participate and make decisions.

 

 

Aim of the study
The aim of this study was to explore and describe the phenomenon of patient participation within the context of hospital nursing in Western Australia. Although both nurses’ and patients’ views were obtained, this paper will focus on only the patients’ perspectives.

 

 

Method
The grounded theory approach (Glaser and Strauss, 1967) was selected to seek insight into the basic social process that explained and clarified the why, how and when of patient participation and decision-making. Grounded theory allows the researcher to examine social interaction and shared meanings in the clinical setting. This is because it is based on the premise that people derive meaning from social interaction with other people and that meanings are modified through an interpretative process. As patients and nurses come together as ‘dyads’ - two people working as one - during the nurse-patient interactions, grounded theory was deemed to be a suitable approach for this study. The sample of 32 patients was drawn from acute medical, surgical and extended care wards from four teaching hospitals. Ethical approval was obtained from the hospitals involved and written consent from the patients. Participants were interviewed and participant observation of patient care in the wards was also conducted. There were 18 female and 14 male patients in the sample. The mean age was 59 years. The ethnicity of the patients varied, with 20 Anglo-Australians, four English, three Italians, one Greek, one Burmese, one Asian and one American.

 

 

Data collection
Patients were interviewed at home following discharge from hospital. The purpose of this was to minimise the perceived threat of disclosing sensitive information while still being in the dependent patient role in hospital. All interviews were 45 to 60 minutes in length and were taped with the consent of the participants. The patients were invited to speak about their views on participation and decision-making and to describe how a given style of care by the nurses influenced the extent to which they made decisions. The interview questions were open-ended and included:

 

 

- What factors helped you to make decisions and to participate in your own care?

 

 

- What factors prevented you from making decisions in hospital?

 

 

- How able were you in making informed decisions about your care?

 

 

The participants were assured that they could withdraw from the research at any time without penalty and that confidentiality of the information would be maintained. Participant observation involved the researcher sitting in a corner of the ward and observing for periods of up to two hours at a time. Field notes describing what was observed was made and these were coded and analysed along with the interview data.

 

 

Data analysis
The taped interviews were transcribed verbatim and analysed using the constant comparative method whereby each line in the transcript is coded and compared with other codes within each interview as well as between interviews. Open, axial and selective coding was performed on the data and from there major categories were developed (Clarke, 1999). To ensure trustworthiness of the analysis other researchers were asked to code slices of data that were then compared with the researcher’s coding. The interpretations of the findings were taken back to the participants for verification in order to enhance credibility (Sandelowski, 1986).

 

 

Results
The results showed that various factors affected patient participation and decision-making in hospital. These are depicted in Figure 1 and will be discussed using direct quotes from the data. The reader is reminded that, while the influencing factors appear to be totally independent in the figure, at times there was evidence that the factors had a combination effect. Patients varied in the extent to which they wished to participate and make decisions, regardless of what the nurses encouraged them to do.

 

 

Attitude to self-care - The analysis showed that patients who came into hospital with the attitude that they should be self-caring were prepared to continue to be independent as much as possible, especially in meeting hygiene needs. One patient said:

 

 

‘I don’t like having to put on other people (nurses) all the time … I like to be independent if I can and I like to handle it myself (own care) like I do at home … I don’t like to ask but I suppose sometimes you have to if you are too sick.’

 

 

These comments were supported by some nurses who stated that it was common for patients who had been used to being independent at home to be enthusiastic about participating in their own care. Furthermore, the nurses claimed that it was sometimes difficult for them to keep patients who want to be self-caring resting in bed for medical reasons.

 

 

While some patients were keen to self-care, others were reluctant. These patients came into hospital with the attitude that nurses were there to attend to all their needs. They explained that, at home, their spouse or partner was always there to do things for them and that they expected nurses to care for them because they were in hospital and therefore ‘must be sick’. One patient who had a drip in her hand, for instance, was observed to ask the nurses to feed her when she was quite capable of feeding herself, as indicated by these field notes: ‘I can’t eat myself (sic) and you have to feed me’ to which the nurse replied: ‘There is nothing wrong with your hands, the drip is secure, you can feed yourself.’ The patient looked at the nurse and said: ‘That’s not the point, you should cut up my food, that’s your job!’

 

 

The nurse reassured the patient that the drip was secure and that she could feed herself, moved the table nearer to the patient and left. Later the nurse explained to the researcher that this patient was accustomed to people ‘running around’ after her at home. The nurse had obtained this information from speaking with the patient on admission.

 

 

Some patients’ cultural backgrounds also appeared to influence their attitudes to self-care. A few male patients came from ethnic backgrounds that were patriarchal in nature. Hence they believed that nurses, being predominantly female, should do everything for them despite being capable of self-care. It was also interesting to note that they wanted to make all the decisions about nursing care such as when they wanted a dressing changed. However, these patients were happy to defer responsibility to doctors, who were predominantly male, to make decisions for them. This is reflected in one patient’s comments:

 

 

‘Nurses take care of you and you should let them, it’s their job … at home, my mum and sisters do all the housework and cooking and look after me and dad … my dad is the decision-maker at home like the men doctors … I don’t mind listening to the doctors but nurses, their work is like housework and I won’t take any orders from the female nurses.’

 

 

Patients used to self-medicating at home were also observed to ask nurses if they could take control of their medication needs while in hospital. This was particularly notable with insulin administration, mild analgesics, and managing long-term cardiac drugs. The nurses were observed to allow patients to administer their insulin if they were well enough but were not prepared to allow patients to self-administer the cardiac drugs or analgesics because of hospital policy. The patients were observed to accept the nurses’ explanations about the hospital policy with regards to their cardiac drugs but were adamant that they should self-administer the mild analgesics. They stated at interview that they had resorted to rule breaking and had self-administered behind the nurses’ backs. For example, one patient said:

 

 

‘I am used to taking Panadol (painkiller) at home for this chronic back pain … so I learned not to declare all my medications to them (nurses) in hospital … so when I have pain, I take the Panadol myself and they are none the wiser.’

 

 

Although some nurses agreed that patients should be allowed to self-administer long-term medications, they stated that, unless the hospital policy changed, there was very little they could do. Collingsworth et al (1997) add that more research needs to be done in the area of self-administration of drugs for hospital patients before the concept can be promoted as safe practice.

 

 

Desire to be a ‘good’ patient - A few patients were concerned about being labelled as ‘difficult’ because they equated being given this label with being given poor care. These patients were reluctant to participate and make decisions about their care, even when they were encouraged to participate and make decisions by the nurses. It was interesting to note that patients perceived that it was paramount that they were perceived to be ‘good patients’ by the nurses. They defined ‘a good patient’ as someone who co-operated with the nurses, complied with everything, and did not voice any opinion, as one patient said:

 

 

‘I did not want to take the risk of upsetting the nurses and worry about poor care from the nurses if I question them and upset them.’

 

 

A study by Irurita (1993) found that some patients equated the obligation to be ‘good patients’ with receiving quality care. Another study by Waterworth and Luker (1990) showed that patients were concerned about obeying rules and making the right impression on the nurses so that they would get quality care. Thus, patients tended to defer all decision-making responsibilities to the nurses (Waterworth and Luker, 1990), making it hard for them to encourage patients to participate in their care.

 

 

Level of medical knowledge - While the majority of patients were willing to make decisions about their activities of daily living and pain management, very few were prepared to make decisions about their medical treatment. The patients perceived that they lacked knowledge about their medical condition. Consequently, they waited for the nurses to invite them to participate rather than to initiate care themselves. One patient said:

 

 

‘I didn’t want to say anything or do anything without their permission (nurses) … I just felt that I have to do what they ask me because I am a patient and they know best … I didn’t want to make any treatment decisions as I didn’t know much about my surgery and they didn’t tell me.’

 

 

It is clear from the comments above that patients were willing to transfer the decision-making responsibility to the nurses because of a perceived imbalance in knowledge. This is also supported by the findings of Avis’s (1994) study. Avis found that patients believed that health professionals worked to their own set agenda, about which patients felt they knew nothing. They were thus prepared to be directed by the nurses. In this study, most patients perceived that nurses and doctors ‘know best’ and were concerned about making the wrong decision, which may be detrimental to their recovery, as expressed by one patient:

 

 

‘I am an engineer and I know my area of work, the nurses and doctors know theirs … I wouldn’t want to interfere with their work, it is like challenging something you know little about and, besides, I am not sure if I want to take the consequences of making the wrong decision!’

 

 

This finding is supported by Biley (1992) who reports that patients sometimes prefer to assume a passive role regarding their treatments because of the fear of making the wrong decisions and not because they preferred to be passive recipients of care. Hence, patients are likely to be content in allowing nurses to adopt a largely directive role and be under their control.

 

 

Previous hospital experience - Patients’ previous hospital experience influenced their level of participation and decision-making. If patients had been exposed to encouragement from nurses to actively participate, they expected to become involved, as one patient commented:

 

 

‘When I have been in hospital before, the nurses always asked me about what I want done, to have a say and question the doctors, so I don’t feel that my rights have been violated … so I feel a lot of respect for the nurses … it’s as if they are giving you permission to have a say.’

 

 

However, some patients had previously come across nurses who had been authoritative and had expected patients to do as they were told. Moreover, some had previously witnessed incidents in which patients who had spoken up about their treatments or care were avoided by nurses. One patient told of an incident she had observed in another hospital in which a patient who had previously complained soiled the bed because a nurse had taken time in bringing a bedpan. Another patient said:

 

 

‘I found from experience that the less you say the better until you are ready to leave because if you complain or question them (nurses), it goes through the floor (ward) like wild fire and everybody sort of is wary of you … they won’t come near you even if you press the bell.’

 

 

Age - Some elderly patients, those over 75 years of age, perceived that nurses were in charge and therefore expected to be told what to do. Furthermore, the patients expressed the view that they would not be listened to because they were old. This viewpoint had been reinforced by nurses’ attitudes towards these patients in previous hospitalisations. A few elderly patients also said they were treated as children by the nurses and had perceived that their opinions were not valued. Therefore, these patients believed that they needed to be directed and guided by the nurses rather than to actively participate in decision-making. One older participant said:

 

 

‘Some nurses treat you like a silly old lady … well, you are senior but to them (nurses) you are another old lady and sort of say, ‘Eat it all up, be a good girl’ and ‘Yes love, no love’ … I don’t like that and wish that they would see that I have all my marbles and really listen to what I have to say.’

 

 

These comments concur with Lanceley (1985) who states that the older person is often denied the privilege of reciprocation with health staff. This leaves the older person with only adherence and obedience as bargaining tools. Others (Hendricks and Hendricks, 1982; Levin and Levin, 1980) claim that staff may have prejudiced views of elderly people because of the devaluation of older people in Western society. This has the potential to cause elderly patients to acquiesce and submit to authority. Accordingly, most elderly patients in my study were prepared to defer all decision-making to the nurses and doctors. Even when the nurses were observed to encourage input from these patients, they were reluctant to participate in their own care.

 

 

Limitations of the study
As this is a qualitative study, the findings cannot be generalised to represent all nursing situations. Nevertheless, the findings do provide nurses with valuable and further insight into how and why patients do or do not participate in their own care. The sample was also specific to medical, surgical and extended care wards. Inclusion of other areas would have provided a broader picture. Further research is thus recommended.

 

 

Discussion and recommendations
This paper has highlighted various factors that influence patient participation and decision-making in hospital. Although the findings are already discussed in the context of relevant literature a few further points need to be addressed here. With regards to attitudes to self-care, it is important that nurses realise that some patients are not going to participate because of their cultural background.

 

 

In order to change attitudes, nurses need time to educate patients and, since hospital stays are short, this may not be achievable. The other attitude is the desire by patients to be ‘good patients’ so that they will get quality care. Nurses are in a position to change this view by overtly demonstrating to patients that their care will not be compromised if they voice an opinion or question the nurses. Nurses can promote a positive nurse-patient relationship via effective communication and advocating for patients (Wright, 1986). Nurses advocating for patients have the potential to demonstrate to patients that they have the nurses’ support in making decisions about their own health-care management. Nurses can also facilitate patient participation by effective patient teaching and information sharing. Patients need to believe that they can ask questions and feel confident that they understand the answers they are given. As indicated in the study, patients need to know that the answers they are given represent the true situation of the problem being discussed (Jewell, 1994). Furthermore, it is essential that the information that nurses give to their patients is based on the patients’ own values so that they can choose the medical options that best suits them. It is important that nurses respect patients’ decisions even if the decisions are in conflict with their own. This is where patients’ rights come in. Patients can decide not to make any decisions about their health care and nurses should respect this.

 

 

As for the older person making decisions, it is important that nurses move away from stereotyping elderly people as mentally incompetent and actively solicit their input in their own care. Using language that denotes respect for elderly people and gaining their trust can achieve this.

 

 

Finally, it is imperative that nurses realise that participation and decision-making is not for all patients and it is not a reflection of less than best practice if nurses are not always successful in achieving full patient participation.

 

 

 

 

Avis, M. (1994) Choice cuts: an exploratory study of patients’ views about participation in decision making in a day surgery unit. International Journal of Nursing Studies 31: 3, 289-298.

 

 

Brearley, S. (1990)Patient Participation: The literature (Royal College of Nursing Research Series). Harrow, Middlesex: Scutari Press.

 

 

Biley, F.C. (1992)Some determinants that affect patient participation in decision making about nursing care. Journal of Advanced Nursing 17: 414-421.

 

 

Cahill, J. (1996)Patient participation: a concept analysis. Journal of Advanced Nursing 24: 561-571.

 

 

Chewing, B., Sleath, B. (1996)Medication decision-making and management: a client-centred model. Social Science Medicine 42: 389-398.

 

 

Clarke, A. (1999)Qualitative research: data analysis techniques. Professional Nurse 14: 8, 531-533.

 

 

Collingsworth, S., Gould, D., Wainwright, S.P. (1997)Patient self-administration of medication: a review of the literature. International Journal of Nursing Studies 34: 4, 256-269.

 

 

Connelly, A.M., Keele, B.S., Kleinbeck, S.V.M. et al. (1993)A place to be yourself from the client’s perspective. Image: Journal of Nursing Scholarship 25: 4, 297-303.

 

 

Glaser, B., Strauss, A. (1967)The Discovery of Grounded Theory. Chicago, Ill: Aldine.

 

 

Hendricks, J., Hendricks, C.D. (1982)Ageism and common stereotypes. In: Carver, V., Limdiard, P. (eds). In an Ageing Population (3rd edn). London: Hodder and Stoughton.

 

 

Irurita, V. (1993)From Person to Patient: Nursing care from the patient’s perspective. Perth, Western Australia: Curtin University of Technology.

 

 

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O’Malley, K. (2001)Irish patients demand the best care. Sunday Times January 21.

 

 

Sainio, C., Lauri, S., Ericksson, E. (2001)Cancer patients’ views and experiences of participation in care and decision making. Nursing Ethics 8: 2, 97-113.

 

 

Sandelowski, M. (1986)The problem of rigor in qualitative research. Advances in Nursing Science 8: 3, 27-37.

 

 

Saunders, P. (1995)Encouraging patients to take part in their own care. Nursing Times 91: 9, 42-43.

 

 

UKCC. (2001)The Code of Professional Conduct. London: UKCC.

 

 

Waddell, C., Petersen, A.R. (1994)Just Health: Inequality in illness, care and prevention. Melbourne: Churchill Livingstone.

 

 

Waterworth, S., Luker, K.A. (1990)Reluctant collaborators: do patients want to be involved in decisions concerning care? Journal of Advanced Nursing 15: 971-976.

 

 

Wright, S.G. (1986)Building and Using a Model of Nursing. London: Edward Arnold.

 

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