February 1999 Bulletin

Sharing the decision

'Ideally, the chosen treatment stems from a consensus of the patient's preferences and the physician's preferences.'

The physician should present information suited to the patient's goals

By Robert K. Snider, MD

If you mention shared decision-making in a group of physicians, each one has an intuitive sense of what it means. In their simplest form, shared information and shared decision-making are no more than "seeing the big picture."

Chronic illnesses stress the importance of seeing this "big picture." Chronic problems affect the quality of a patient's life, not necessarily the quantity, and understanding these problems requires a quality patient-physician interaction.

Patients come to the physician to learn what their problem is, how it will affect them in the future and how it can be modified. In a similar vein, the physician needs to know how the problem affects the patient's life, how they are currently tolerating it and what their expectations are for the future. When this interaction occurs, the patient and physician are sharing information.

Shared decision

Sharing a decision means that both the patient and the physician express their treatment preferences, and reach consensus on the best alternative given the concerns stated in their shared information.

The doctrine of informed consent does not necessarily imply a shared decision. It simply says the patient has been informed about their illness and the proposed treatment, and consents to it. It does not say that the chosen treatment is the patient's preference, though that may be implied.

Characteristics of shared decisions

At least two persons involved. If either the patient or physician alone expresses a preference for treatment, no sharing occurs.

All parties share information. The physician holds information the patient cannot be expected to know. The physician identifies the physical impact of the patient's disease process, and knows the likely natural history of the disease, what interventions will modify that natural history, and to what extent the natural history can be altered.

The patient knows how the disease impacts his or her life, and the value of well-being as they see it. For example, patients who smoke accept the risks inherent to this problem, yet the physician may not ask them to verbalize their acceptance. While the physician may educate the patient on risks associated with a particular behavior, the physician may not accept the patient's decision to continue with those risks. Physicians often perceive these patient preferences more as weakness than preference, and may discount the patient's choice.

Steps to build consensus. With the shift from acute to chronic disease prevalent in our population, patients seek treatment for conditions for which there may be no clear cut "best choice." Consensus is especially important in these circumstances, even when the patient's preference might include alternative medical options.

Common models of interaction

Paternalistic model. The physician evaluates the patients symptoms, physical signs and diagnostic tests, and recommends treatment to the patient. The physician is dominant and the patient's options are to accept these recommendations or see another physician.

Informed decision-making model. Once the patient receives information from the physician, he or she possesses all of the information needed to make the decision. In other words, the patient doesn't need to share their preferences, or the impact the disease has on their life.

Professional-as-agent model. The physician is asked what he or she would do given the patient's circumstances. Since the patient has shared their information and preferences with the physician, the physician now has all information with which to make a decision.

Multimedia model. In the last few years, researchers have developed models of information transfer using multimedia presentations, such as videotape or CD-ROM. The most well known are in the areas of hypertension and benign prostatic hypertrophy. The physician has the patient watch (or interact) with a presentation, and then meets with the patient to reach a consensus on various treatment alternatives.

Pitfalls of decision-making

Information asymmetry. The physician holds information relating to medical treatment, treatment outcomes, physical effects of the illness and medical urgency or necessity. The patient holds information relating to the manner in which the condition affects their life. The patient's family holds information on the patients past decision-making history, reluctance or acceptance of care, compliance and relationships in the family structure.

A surprisingly large number of initial physician-patient interactions are completed when the physician shares information with the patient. The patient may be satisfied simply knowing what is wrong, and conversely, what is not wrong. Patients often seek a diagnosis, not treatment and are satisfied when they find their problem is not cancer or a debilitating illness.

Patient's representative (coalitions). If the patient is accompanied by another who is to be involved in the decision-making process, there are three or more people involved in the process. Coalitions may form between the patient and their representative, between the physician and the patient, or between the physician and the representative.

The patient's representative may fill one or more of several roles in the process:

When the diagnosis or treatment is stressful, uncertain, or serious, the representative's role may be important to both the physician and the patient. In situations of greater medical urgency, coalitions are less common. Coalitions are more frequent with chronic diseases, and are related to the impact of the condition on the patient's overall quality of life.

Multiple physicians involved (coalitions). Illnesses which involve care by multiple physicians are more likely to generate uncertainty and confusion for the patient. Busy schedules often prevent the physicians from presenting a united scenario for the patient to evaluate. The most usual situation is for each physician to present his or her information directly to the patient instead of to the admitting or primary physician. When conflicting or complex information is presented, the decision-making process is more likely to shift to the paternalistic model where the patient abrogates their role in the face of complexity. The situation worsens if the physicians disagree about the importance of a colleague's recommendations.

Multiple illnesses. Decision-making becomes more complex with multiple illnesses. The patient's ability to understand the complex interactions of two or more pathologic processes is influenced strongly by education, intelligence, personality and even by the physician's ability to grapple with the same complex set of interactions. The entire process is muddled by interventions which may already be in progress, such as a medication regimen or recent surgery.

Urgency. Urgent conditions often shift to the paternalistic model since the patient's care may require multiple physicians, each managing a specific part of the patient's overall condition. Consensus in these situations is often hasty, and the patient or the patient's representative may not feel deeply involved in the decision-making process, even though they may wish to be.

Lack of authority. Teenagers may arrive unaccompanied by an adult, either to assert their independence, or because of a conflict in the parent's work schedule. No binding decisions can be made in this situation. The physician will likely have to repeat the entire information-sharing discussion with a parent, a frustration that may effect the extent and degree of information sharing possible given the limitations of a busy practice.

Similar situations can arise with the elderly, if they are incompetent or disabled, and not accompanied by a legal guardian or a family member with legal power-of-attorney.

Research

Literature in this area is sparse and falls mostly in the social science arena. There are several confounders in this area of research-age and language. Two are presented here.

Age issue. Elders may bring a family member or close friend for advice or help with decision-making. Since many of the current elders are female and had the societal role of homemaker, but not decision-maker, they often delegate decision-making to the physician (paternalistic model). As baby-boomers become elders, this process may shift to shared decision-making because of their higher education level and greater sense of independence.

For many elderly, shared laughter signifies acceptance and is a key part of the physician-patient interaction.

Language issue. Communication is a two-way street. Use of common language, illustrated with everyday examples or metaphors, allows free communication between physician and patient. Many patients, when confronted with technical terms they don't understand, will sit passively, perhaps nodding acceptance, yet internally feel embarrassed to admit they don't understand the vocabulary the physician expects them to have. Patients don't know the shorthand of medical jargon. While many of the baby-boomers have a good vocabulary, they don't understand the nuances of many medical words they use.

Some studies suggest that patients who require an interpreter fare poorest in information-sharing and decision-sharing. This problem may be compounded if the interpreter is not someone close to the patient, and doesn't know the patient well enough to participate in a coalition.

Proposed model

Environment. The physician must create an environment in which the patient's preferences are valued and desired.

From Tom Morris' book ("If Aristotle Ran General Motors") "Ideally, whenever people are in a productive partnership together, they need to share purposes which are rooted in their deepest values and have been arrived at through a process of at least some mutual exploration and development. The partnership should be a true collaboration with the active engagement of all parties bringing the best of who they are, what they know, and what they can do to that collaboration, and with both respect and honor flowing from each partner to each other partner. The people involved should be acting ethically, and should be showing each other love and appreciation as they interact."

Information-sharing. The key issue is that the physician shares information about the patient's condition and about available treatments.

When discussing alternatives with the patient, the physician should present information that is suited to the patient's preferences and goals, and present it in an objective manner. Treatment alternatives will fall into one of three categories: no treatment, nonsurgical treatment or surgical treatment

In some circumstances, the physician will have multimedia presentations or handouts to help the patient review and better understand their options after they leave the office.

Decision-sharing. Ideally, the chosen treatment stems from a consensus of the patient's preferences and the physician's preferences. It assumes the patient understands the risks and benefits of the chosen treatment, and that the physician understands the patient's concept of well-being.

References

  1. Barry MJ, Fowler FJ Jr, Mulley AG Jr, Henderson JV Jr, Wennberg JE: Patient reactions to a program designed to facilitate patient participation in treatment decisions for benign prostatic hyperplasia. Med Care 1995;33:771-782.
  2. Charles C, Gafni A, Whelan, T: Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681-692.
  3. Greene MG, Adelman RD, Friedmann E, Charon R: Older patient satisfaction with communication during an initial medical encounter. Soc Sci Med 1994;38:1279-1288.
  4. Greene MG, Majerovitz SD, Adelman RD, Rizzo C: The effects of the presence of a third person on the physician-older patient medical interview. J Am Geriatr Soc 1994;42:413-419.
  5. Mazur DJ, Hickam DH: Patients' preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med 1997;12:114-117.
  6. Morris, T: If Aristotle Ran General Motors: The New Soul Of Business. New York, NY, Henry Holt & Co., 1997.
  7. Shepperd S, Coulter A, Farmer A: Using interactive videos in general practice to inform patients about treatment choices: a pilot study. Fam Practice 1995;12:443-447.


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