Sharing decisions in cancer care
Introduction
During the past decade much has been written about the growing expectation of patients to participate in medical care and about informed choice in treatment decision making (Balint, 1996; Charles & DeMaio, 1993; Charles, Gafni, & Whelan, 1997; Feste & Anderson, 1995; O’Connor, 1997). There are many reasons for this increased emphasis on patient rights. As communities in Western society have become better educated and informed about health care issues, a fundamental shift in society's expectations of the appropriate role for clinicians has occurred. Whereas once medical practitioners were considered above reproach and question, the community now expects the medical profession to be accountable for its actions and decisions. Calls for increased accountability have also emanated from within professional and government ranks, in efforts to standardise clinical practice and improve health care outcomes (AHCPR, 1995; Chassin, 1993; General Accounting Office, 1991; Harvey, 1991; Marteau, Snowden, & Armstrong, 1998; NHRMC, 1999). Moreover, consumer advocacy groups have added momentum to legitimising patient participation, and are assuming a greater role in formulating health care policies in many nations (Charles & DeMaio, 1993).
Charters for patient rights, for example, the internationally binding Declaration of Helsinki (World Medical Assembly, 1964/1996), exist to formally safeguard patient autonomy. In the United States, the Patient Bill of Rights has been passed by the Senate (Climent, 1999), which legally requires that written information be given to patients prior to receiving medical interventions. Similar documents exist in Canada (Ontario Ministry of Health, 1994, cited in Charles & DeMaio, 1993) and the UK (Department of Health, 1997). Whilst ratified documents analogous to these acts do not exist in Australia, the landmark legal case “Rogers vs. Whitaker” (1992) ruled that consent for treatment must be based upon the wishes of the “reasonable patient” rather than upon the decision of a “reasonable doctor”. According to this ruling, doctors would be negligent if they failed to disclose all risks and benefits of treatment to which patients would “reasonably be expected to attach significance”. Similar legal rulings highlighting the obligation of doctors to adequately inform patients about the consequences of their medical care have been handed down in the United States (Truman vs. Thomas, cited in Lord, 1995).
These influences on devolving decision-making authority from doctors to patients are generally welcomed by both consumers and clinicians (O’Connor, Llewellyn-Thomas, Sawka, Pinfold, & Harrison, 1997). Many doctors and researchers have commented on the need to involve patients in decision making where the gains of treatment must be weighed up against the possible adverse effects. As the benefits of treatment are commonly uncertain and may be offset by adverse effects on quality of life, an optimal treatment choice may be sensitive to the values patients ascribe to both positive and negative outcomes of treatment.
Few people today would dispute the ethical and legal mandate for patient involvement in medical care. However, there is considerable uncertainty about what constitutes an ideal level of patient participation.
Models of doctor–patient relationships have been proposed as alternatives to paternalism. These models vary in how much decisional authority is conferred to or assumed by patients and include the physician as agent, informed decision making, and shared decision making models (Emanuel & Emanuel, 1992; Gafni, Charles, & Whelan, 1998; Quill & Brody, 1996). The physician as agent model casts the doctor in the role of expert adviser who incorporates the values of the patient when making a treatment recommendation. The doctor either elicits these values from the patient or assumes these on behalf of the patient. Here the doctor clearly has command over the decision-making process. As patient participation is limited, the autonomy of patients may be undermined, especially if the presentation of treatment options is biased by either the amount of information given or how this information is conveyed (O’Connor, 1989; Sutherland, Llewellyn-Thomas, Lockwood, Tritchler, & Till, 1989).
Informed decision making stands at the opposite end of the spectrum and is grounded in consumerist philosophy. Like the physician as agent model, informed decision making recognises the technical expertise of doctors that patients do not typically have. Here it is assumed that patients are capable of eliciting and understanding information about the available treatment choices, can recognise and articulate their needs and preferences and then are able to successfully synthesise these components to arrive at a fully informed decision. The doctor neither advocates nor advises; she or he is merely required to honestly disclose information to patients which enables them to arrive at decisions consistent with their values.
Proponents of shared decision making, however, advocate a bipartisan approach. Here doctors and patients are seen as equal partners and are required to exchange information and share their preferences for treatment in order to negotiate a mutually acceptable decision. This model acknowledges that successful communication is often frustrated by deficiencies in doctor communication skills (Ford, Fallowfield, & Lewis, 1996), and patient inability to comprehend information presented to them because of anxiety (Ley, Bradshaw, & Kincey, 1973) or denial (Gattellari, Butow, Tattersall, Dunn, & MacLeod, 1999b). A model in which one party pre-dominates may result in a suboptimal decision as neither partner has both the necessary and sufficient qualities required for making a decision. Thus, a contribution from both parties is required before an optimal decision can be made.
Arguably, shared participation may be preferred over models that privilege the decision-making authority of one participant over the other. According to this argument, a shared decision will maximise patient satisfaction with the medical consultation and may also enhance the emotional status of patients. However, the merits of a shared approach to decision making in comparison to one dominated by either patients or doctors is yet to be empirically tested.
Evidence from research on the benefits of patient participation is equivocal, and often challenges the assumption that patient participation per se is inherently desirable and beneficial. Controlled studies of patients with chronic conditions such as hypertension, diabetes and benign prostatic hyperplasia have shown that patient participation in medical care promotes both psychological and physical well-being in terms of reduced anxiety and depression and improved physical symptomatology (Barry, Cherkin, Chang, Fowler, & Skates, 1997; Greenfield, Kaplan, & Ware, 1985; Kaplan, Greenfield, & Ware, 1989).
Studies of cancer patients have produced inconsistent findings and have focussed predominately on women with breast cancer. In one non-randomised study of 30 women with early stage breast cancer, Morris and Royle (1987) compared patients who were and were not given a choice between surgical interventions. The latter group of women experienced heightened levels of anxiety and depression that persisted for two months. However, Ashcroft, Leinster, & Slade (1986) reported that the psychological adaptation of women with early stage breast cancer did not depend on being offered a choice, whilst Levy, Hebermann, Lee, Lippmann, & d’Angelo (1989) reported significantly worse outcomes for women given a choice of surgery. Fallowfield and colleagues (Fallowfield, Hall, Maguire, & Baum, 1990; Butow, Dunn, Tattersall, & Jones (1994a), Fallowfield, Hall, Maguire, Baum, & A’Hern (1994b)) followed 269 women with early stage breast cancer from the time of diagnosis for three years and compared outcomes for women consulting surgeons who offered choice between mastectomy or lumpectomy or surgeons who favoured one option. Whilst patients who consulted with surgeons who offered a choice had significantly better psychological health than those whose doctors routinely recommended mastectomy as the preferred option, no significant difference was found between patients who had a genuine choice of treatment with those whose tumour characteristics precluded being offered a lumpectomy. The authors concluded that the consultation style of surgeons is more important for psychological well-being than being allowed choice of treatment. That is, being an equal participant in decision making is more critical for patient well-being than being given a choice between treatments.
One may argue that imposing choice on patients is as detrimental as imposing advice, and neither approach reflects the tenets of shared decision making. A substantial literature base exists showing that a considerable minority of patients prefers to relinquish decisional control (Butow, Dunn, Tattersall, & Jones, 1994; Degner & Sloan, 1992; Sutherland et al., 1989) particularly if faced with increasingly distressing and unfamiliar situations. Degner and colleagues (Beaver, Luker, Owens, Leinster, & Degner, 1996; Bilodeau & Degner, 1996; Degner et al., 1997a) have demonstrated that preferences for involvement shift as one moves along the continuum from wellness to illness. The well community typically expresses a preference for a dominant or collaborative role in decision making, with this preference being less strong in those with benign medical conditions. Those affected by a potentially fatal disease such as cancer, however, are more likely to prefer to entrust decisions to doctors (Beaver et al., 1996). Furthermore, amongst cancer patients, those with advanced disease and with a poorer health status are least likely to want involvement in decision making (Butow, Maclean, Dunn, Tattersall, & Boyer, 1997). Thus, prescribing increased patient involvement for all may well be a form of paternalism in which the well community dictates what is best for patients.
This concern has lead researchers to suggest that doctors should tailor involvement to patients’ desired level of control rather than aim for overall increased patient participation (Fallowfield, 1997; Guadagnoli & Ward, 1998). To date, three studies have demonstrated that cancer patients commonly fail to achieve their desired level of involvement in treatment decision making (Bilodeau & Degner, 1996; Degner et al., 1997a; Sutherland et al., 1989). However, as the effect of this incongruity between preferred and achieved decision-making roles on patient outcomes was not assessed, it is unclear whether this discrepancy has a negative, if any, effect on patient well-being. Moreover, these studies are limited as data on preferred and achieved roles were collected at the same time point, thus the results may be particularly susceptible to recall bias. Also, the question of how greater or lesser involvement than desired impacts on patient emotional status and the doctor–patient partnership remains unanswered.
We report the findings of a limited prospective study in which cancer patients indicated their preferred and perceived achieved role in treatment decision making as it related to an actual decision made during their initial consultation with an oncologist. Patients reported their preferred role immediately before the consultation and their perceived role two weeks after the consultation. We aimed to determine, firstly, whether matching roles, that is, a successful tailoring of patient participation, confers benefits to patients, and secondly, whether patients who jointly decide on treatment with their doctor experience better outcomes than others. In this way, the relative and differential effect of tailoring patient participation to preferences and patient participation per se was explored.
Section snippets
Methods
Data presented here were collected as part of a randomised controlled trial evaluating the effectiveness of interventions designed to promote question asking in the consultation. Patients were randomly allocated to receive a sheet prompting them to ask their doctor questions about their disease, prognosis and treatment if they wished to do so. In addition, doctors involved in the study were randomly allocated to either proceed with the consultation as usual, or, in the case of patients who
Loss to follow-up
At two-weeks’ post-consultation, 68 patients (20.6%) were lost to follow-up, leaving a sample of 267 patients. Of these 267 patients, one patient did not report their preferred level of involvement before their consultation and 33 reported at two-weeks’ post-consult that a treatment decision was not reached during the consultation. Claims that treatment was outstanding were validated against doctor reports and there was agreement for all patients. Decisions in most cases (n=28) were outstanding
Discussion
We aimed to determine which produced greater benefits: tailoring patient participation to patient preferences or encouraging shared decision making. Our results showed that role mismatch was related to patient anxiety and that perceived role was related to patient satisfaction. Hence, both tailoring involvement to patient preferences and patient involvement per se may optimise patient outcomes.
This prospective study documented that most cancer patients fail to achieve their desired level of
Acknowledgements
The authors gratefully acknowledge the patients and oncologists who participated in the study. The assistance of Richard Brown, Elizabeth Dent, Robyn Miller and Megan Miller in managing the project is also gratefully acknowledged. This project was supported by a grant from the National Health and Medical Research Council of Australia.
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