Patient-centered or Patient-focused Care
Patient Information Needs
Participation Styles in Decision Making

Most studies of provider-patient communication have focused on primary care or general internal medicine settings. Although many of the findings may be applicable to oncology, several unique elements present in oncology are not present in many other medical settings. Cancer is a life-threatening illness. Although recent treatments have increased the hope for cure or at least the arrest of the disease, the diagnosis of cancer results in significant fear, uncertainty, and commitment to often arduous, expensive, and complex treatments. Therefore, communication and the provider’s relationship with the patient and the patient’s family are particularly important in providing support through the crisis of cancer.

Cancer care can also be emotionally taxing on the oncologists who must frequently give bad news and deal with dying and death. Because of reimbursement issues, medical visits have become shorter while patients’ desires for information have increased.[1] Patients regard their oncologists as one of the most important sources of psychological support,[2] while oncologists receive almost no training in communication and the interpersonal dimensions of patient care.[3] Communication research in oncology has begun to change this landscape by demonstrating the association of good communication skills with enhanced patient satisfaction, compliance with treatment, increased patient knowledge, enhanced accrual to clinical trials, better transition of patients from curative to palliative treatment, and decreased oncologist stress and burnout.[4]

The scientific study of communication skills in oncology, however, is still in its infancy. Three key concepts have nonetheless emerged in defining the importance of interpersonal and communication skills in the interaction of providers with cancer patients and their families:

• A patient-centered approach best describes the most effective way of providing comprehensive cancer care,[5] and communication skills training can no longer be considered an optional skill.[6]



• The communication between the oncology clinician, patient, and patient’s family is associated with important outcomes of care.



• Communication skills are not innate, do not necessarily improve with clinical experience, but can be taught and learned.

Several reports provide an overview of these issues.[7-10]

The patient-centered model of care emphasizes the importance of the clinician’s relationship with the patient and the patient’s family as a therapeutic tool, endorses shared decision making as a key component of treatment, and emphasizes clinician understanding and addressing of patient concerns and information needs as important in promoting patient well-being and quality of life.[11,12] Interpersonal and communication skills are essential in achieving these goals and are also associated with other important clinical outcomes for the patient, the patient’s family, and the medical team. These skills are especially important in highly charged emotional situations such as transitioning the patient to palliative care and at the end of life.

Imparting information to the patient serves a number of key functions: it grants patients a sense of control, and it can reduce anxiety, improve compliance, create realistic expectations, promote self-care and participation, and generate feelings of safety and security. Many patients actively seek information and identify acquiring information as a priority. In one study,[13] with 12 specific information and support topics listed, patients chose information as their greatest need. Ninety-seven percent of patients wanted more feedback on the progress of the cancer, 88% wanted more information on the probable future of their illness, and 91% wanted more information about their illness. Another study [14] found that 83% of the breast cancer patients interviewed wanted as much information as possible, 16% wanted limited information, and 91% of women wanted to know their prognosis before beginning adjuvant treatment; 63% wanted their oncologist to ask them whether they wanted to know their prognosis. Patient needs may, however, shift to an emphasis on support immediately after the first consultation. A study has shown that 63% of patients also wanted more assurance that they would be looked after, 59% wished for greater reassurance and hope, and 59% expressed an increased need to talk about their worries and fears.[13] In several studies, information-seeking has been found to have beneficial effects on increased compliance, increased patient satisfaction, improved quality of life, and reduced distress.[13,15,16]

Although many patients have high information needs, some patients want less information about their cancer. Research increasingly supports clinical experience in clarifying that patients differ in the amount of information they want and need about their cancer care.[17] In addition, patients’ information needs may change at different points on the disease and treatment trajectory, with patients who have advanced disease desiring less information about their illness.[13] It is often difficult for providers to accurately estimate or provide the amount or type of information that patients want, leading to patient dissatisfaction with the amount or type of information they receive.[18-21] Thus, it is important for a clinician to ask how much information a patient wants.

Research has attempted to characterize different information styles in a variety of ways. One of these is monitoring and blunting.[22] Monitors actively seek information, whereas blunters avoid or distract themselves from information. For example, one study [23] found that having a monitoring style was related to a preference for detailed information, participation in medical decision making, and patient question-asking. Thus, patient information style may greatly affect patient communication preferences and patient interactions with health care providers. This area warrants additional study and has implications for how patients adjust to their cancer experience.

Participation style in decision making represents how much patients want to be involved in the decision-making process related to their cancer. Studies of patient desire to participate in treatment decisions have yielded conflicting results, largely depending on how participation in decision making is defined. Participation can range from the patient actively engaging in the decision-making process, to the patient wanting the doctor to make the ultimate decision.[24] The desire to participate in treatment decisions is associated with locus of control, which describes how an individual tends to attribute control. Patients with an internal locus of control seek information to control their own destinies, whereas those with an external locus of control tend to passively accept their lot.[25]

Because research shows that a range of patient decision making exists, increasing participation for all patients may not be the most effective strategy. One study [26] categorized patients with early-stage breast cancer into the following groups:

• Delayers, who consider at least two options, but their deliberation is perfunctory and they immediately prefer one option.



• Deferrers, who accept their doctors’ recommendations without a significant degree of reflection.



• Deliberators, who weigh the pros and cons of each treatment and do not make a choice until they have considered all the relevant information and have found an alternative with which they are satisfied.

Another study [27] identified four patterns to describe how patients’ emotional styles affected treatment decision making. These styles were labeled passive, avoidant, panicked, and rational. Passive decision makers allowed directive physicians to make treatment choices for them. They responded more to the caring attitude of their provider and the need to have someone to believe in rather than to an opportunity for autonomous decision making. Women with breast cancer using an avoidant style of decision making refused to actively confront their diagnosis or participate in planning their cancer treatment. Panicked patients were so fearful when confronted with a diagnosis of cancer that they could not participate in decision making, whereas rational decision makers were able to control strong feelings of fear and engage fully in decision making.[27] Results of another study found that whereas most well people preferred to play an active role in decision making, very sick people preferred the doctor to make decisions,[13] suggesting that seriously ill people may prefer a degree of paternalism in their care because an active role in decision making may take more physical and mental energy than these patients can afford. Alternatively, there may be a limit to the amount of negative and pessimistic information people can absorb before their capacity for coping is seriously compromised.[13]

Although the categorization of patients into various participation styles appears to offer some useful predictive power for defining communication patterns, the issues are complex. It has been suggested that to match the provision of information and support with the expressed needs of patients, patients should ideally be queried frequently about their needs.[13,28] Information and involvement preferences may also be responsive to factors such as changing disease status and the behavior of the physician during consultation.[27] Individualizing treatment discussions to patients’ preferred decision-making styles rather than encouraging decision-making autonomy is likely to maximize outcomes for patients with cancer.[29]

References

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2. Mitchell JL: Cross-cultural issues in the disclosure of cancer. Cancer Pract 6 (3): 153-60, 1998 May-Jun.  [PUBMED Abstract]
   
   
3. Hietanen P, Aro AR, Holli K, et al.: Information and communication in the context of a clinical trial. Eur J Cancer 36 (16): 2096-104, 2000.  [PUBMED Abstract]
   
   
4. Ong LM, Visser MR, Lammes FB, et al.: Doctor-patient communication and cancer patients' quality of life and satisfaction. Patient Educ Couns 41 (2): 145-56, 2000.  [PUBMED Abstract]
   
   
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