Patient Proxies in Decision-Making

What computers can\\\'t capture

Joy Higgs, Director The Education for Practice Institute Charles Sturt University, Australia.

Franziska Trede, Senior Lecturer The Education for Practice Institute Charles Sturt University, Australia.

Anne Croker, Research Associate The Education for Practice Institute Charles Sturt University, Australia.

Healthcare policy makers face the challenging task of balancing managements’ requirements for quantified information with the often unmeasurable realities of clinical decision-making. Decision-making and healthcare policies need to be responsive to biomedical, personal, cultural, as well as economic needs.

Many technological, human, economic and knowledge accessibility factors are making healthcare increasingly complex for providers and consumers alike. This complexity requires a form of decision-making that balances the collection and use of technical, rational information for cost-effective evidence-based care and accountability, and consideration of patients’ interests and their wish to participate in clinical decision-making. Alongside these changing patient attitudes, health professionals are increasingly taking on the roles of patient advocate and proxy through patient-centred inter-professional decision-making.

Different worlds and competing interests

The worlds of health management and patients collide on many accounts. Policy makers and managers may look at patients from the-point-of-view of a diagnosis that needs to fit into particular groupings, a body occupying bed days and a number that needs to meet benchmarking targets. However, there is a risk that care plans that are developed without fully understanding the patient’s situation are ineffective and inefficient. Patients bring hopes, fears and at times unreflected expectations to their hospital stays. Health management interests may concentrate on measurable data and efficient patient flow, whereas patients want to be respected, listened to and well cared for. A one-sided focus on electronic, codified information may impede and marginalise the complexity of professional practice as well as silence the voices of patients. The challenge for stakeholders of hospitals and other healthcare services lies in providing balanced policies that enable both worlds to blend to achieve acceptable processes and outcomes for all.

Complexity of professional practice

There is a solid body of evidence-based knowledge that guides best clinical practice of decision-making from biomedical perspectives; however, this perspective is only one amongst many. Other perspectives include professional values and ethics of healthcare professionals, cultural beliefs of patients and their carers, staffing levels, and economic perspectives of hospital management. For example, we can understand a young doctor’s recommendation to a geriatric patient to start living in institutionalised care in order to be safe. We can also understand the reluctance and resistance of patients to comply with such a recommendation because they want to remain in their home environment. Delaying such a patient’s discharge can be seen as an uneconomical approach to hospital bed occupancy once all biomedical aspects of the patient’s care needs have been addressed. Instead, providing opportunities for adequate discussions with patients and their families, responding to their concerns and searching for the most suitable accommodation for individual patients can be seen as a duty-of-care approach to hospital bed occupancy.

Hearing patients’ voices and proxies in team decision-making

One area where complexities of professional practice are evident is the inter-professional discussions that occur at case conferences or team meetings about patient care. These meetings provide regular forums for doctors, nurses and allied health staff to discuss patients. Members of the different professional disciplines bring their own perspectives and understandings of their patients’ problems, abilities and contexts. As patients may not be present during these discussions, there could be a risk that their perspectives and wishes are obscured or sidelined within the milieu of health professionals’ contributions. However, a recent qualitative research project exploring the experiences of collaboration in rehabilitation teams found that patients’ voices and proxies were brought informally to case conferences through the stories and anecdotes that health professionals shared with each other (Croker, Higgs and Trede 2008). These overlapping conversational-style interactions were interspersed between the formal sequences of contributions in case conferences observed in this research. Team members shared stories describing patients’ conditions and situations, gave examples of insights and concerns, and relayed extracts of their conversations with patients and families. These contributions often stimulated responses from others and triggered recall of other incidents.

The patient’s voice became evident in these overlapping discussions, particularly when team members repeated verbatim patients’ words in ‘she said’ or ‘he said’ types of contributions. From these spontaneous and seemingly disordered interactions, shared understandings of patients’ situations, aspirations and directions emerged. These shared understandings often influenced team decisions. The following scenario gives an example of how team decisions can be influenced by a patient’s proxy.

“He said he wants to go home on the weekend”: Following a stroke, Duncan was admitted to a rehabilitation unit 250 kilometres from home. His wife Peg was torn between spending time with Duncan and returning home to be with her elderly mother. Duncan still required extensive assistance with everyday activities. When he initially expressed a wish to return home with his wife for a weekend visit, the team were sceptical about the feasibility of this. However, when they heard about how keen he was to see his friends, sleep in his own bed for a weekend and take the pressure off his wife’s concerns about her mother, they decided to work with his local health service, family and friends to ensure that his visit would be adequately supported. His local health department provided a shower chair, his builder friend put in a toilet rail, and his neighbours ensured that someone was with him when his wife was visiting her mother. The visit went well and Duncan returned to the unit with a new understanding about the progress required to regain independence at home and renewed enthusiasm for rehabilitation.

Opportunities to relay patients’ hopes, fears, perspectives and aspirations through the sharing of stories and anecdotes provided informal ways of bring their proxies to meetings. However, in highlighting the contributions patient proxies make to patient-centred clinical decision-making, this research also raises an important question: How can a balance be achieved between the time taken to incorporate patients’ voices and the need for team members to be responsive to work time pressures?

Valuing patients’ voices and proxies in team decision-making

Sharing patient stories may not fit comfortably with the ‘body focus’ biomedical model and procedural concepts of efficient team meetings. While many team members interviewed in the research valued the role of storytelling for developing shared understandings of patients and their rehabilitation directions, some were significantly time pressured and preferred quicker meetings. However, if teams routinely shorten their case conferences there is a risk of marginalising patients’ voices and proxies. Health professionals’ contributions could be reduced to discipline-centred reports of progress, and teams’ foci could be narrowed to collecting and recording information for procedural purposes. In short, such an approach to case conferencing would thwart the incorporation of patient proxies in shared decision-making. Critical opportunities for building networks of understandings about patients would be missed.

Can we value what computers can’t capture and policy makers don’t see?

Accountability and reporting to other team members are important aspects of being a professional. However, accountability extends to patients and also to self, not just the technical tasks of healthcare. Deficiencies in procedural accountability are often obvious, for example inadequate documentation can be identified through monitoring of adverse events. The situation is different for patients’ voices and proxies at team meetings. While audible during meetings, these voices then merge into decisions and rehabilitation directions, and often disappear. Once they become part of teams’ decisions there may be no evidence that they were ever there.

Valuing what cannot be seen and counted can be difficult. While policy makers’ requirements for quantified information from clinicians are not disputed, the value of the often invisible informal sharing at case conferences should not be discounted. An unequal focus on technical rational information over patient-centred narratives relies on the caring attitudes of health professionals and the professional culture they create with each other to bring patients’ voices and proxies to team decision-making. Adequate time for case conferences, stability of team membership, team social events and sharing food during meetings are some ways of creating suitable atmospheres in which team members in this research feel encouraged to contribute their stories and anecdotes. While this may sound obvious and mundane, there is a danger of overlooking such basic concepts when team meetings are rushed or common practice removes the patient’s voice from the debate.

If patients’ needs and expectations are to be valued alongside hospital procedures and documentation structures, policy makers need to not only appreciate but actively support the notion that there is more to healthcare than what can be captured by computers and quantified reports. With this awareness and leadership, health managers can play a key role in enabling and nurturing complex professional practice. Key questions that should be posed to scrutinise all policies are: “Does this policy impede patient-centred practice?” and “Where is the patient in this policy?”

A patient-centred orientation to clinical decision-making that includes patients’ hopes and fears can assist interprofessional teams in making relevant and meaningful decisions. Management can play a role in supporting this by appreciating and actively supporting a professional practice that is responsive to the complex and human world of people in search of improved health.

Croker A, Higgs J, Trede F, (2008) Shared decision making in rehabilitation teams: the role of patient-directed proxy. International Conference on Communication in Healthcare, 2-5 September, Oslo, Norway.

Authot Bio
Anne Croker initially worked as a physiotherapist in the area of rehabilitation, and then subsequently worked with teams of individuals from different professional and consumer groups in an area of public health. These experiences led to her current PhD research interest in how members of rehabilitation teams collaborate with each other.

Franziska Trede has extensive experience as a, university lecturer, clinical physiotherapist, health communication researcher and hospital policy adviser. She researches in the area of complexity, cultural diversity, uncertainty and communication in clinical practice. She is interested in exploring values, bias and practice philosophies that shape the way clinician practise.

Joy Higgs is the Strategic Research Professor in Professional Practice at Charles Sturt University. She has published widely, including 14 books, in her fields of expertise in professional practice, knowledge and education. In 2008 she published the third edition of Clinical Reasoning in the Health Professions with Mark Jones and colleagues.

Author Bio

Joy Higgs
Franziska Trede
Anne Croker