On Suffering: Pathways to Healing and Health

8. Power Differentials and Suffering

8 * Power Differentials and Suffering The need for personal autonomy and the impact that medical and legal discourse can have on personal power indicate that a complete assessment of individuals who suffer requires a comprehensive, objective measurement tool. The Measuring and Assessing Suffering Questionnaire (masq) is a clinical measurement tool to aid clinicians in determining those patients who are experiencing the process of suffering and to assist health care providers in planning effective, relevant, evidence-based treatment programs for those individuals who have a chronic illness. A more comprehensive treatment of suffering may have a positive effect on the management of pain and help prevent chronic disability. This chapter presents: (a) the importance of obtaining informed consent from patients in both clinical and research environments, (b) the purpose of the masq and a review of key definitions to aid clinicians in data interpretation, (c) a description of the structural elements of the questionnaire, (d) a brief summary of validity and reliability values obtained from statistical analyses of the masq, and (e) collation of research findings. Examples of demographic data collection pertinent to the treatment of individuals with chronic illnesses such as arthritis, epilepsy, migraine headache, and spinal cord injuries are presented. Informed Consent: Restoring Personal Power and Autonomy Clinical Practice Requirements Information Sheets · Patients with chronic illness who suffer often say that with the onset of illness or injury they find themselves in a foreign world, a social world that they no longer understand. When managing suffering in clinical practice, it is important that health care providers give patients the tools needed to help them understand their changed circumstances. Patients can be given information sheets that delineate the qualifications of the health care professional with whom the individuals will work as well as the philosophy of care and organizational policies of the health care facility. Information may be provided in written form, in concise, clear language that is free from professional jargon. These information sheets may be reviewed verbally with the patient prior to obtaining consent, and patients should be given time to consider the issues at hand. This type of information will show respect for the patient’s autonomy because consent would be based on an ethical framework rather than on power. Patients are then more likely to form realistic expectations of their health care provider and the health care organization. 110 Identifying Those Who Suffer The goals of the relevant health care profession should be clearly described. In the example provided (see example 1), the profession of physiotherapy is briefly described. The types of specialized modalities are also described so that patients have a basic understanding of any procedures that may be used in their care. A brief outline of what is involved in the treatment plan is illustrated, and issues such as any clothing, hair products, creams, lotions, or other factors that may impact on the efficacy of the treatment or evaluation of the patient need to be described. Patients are usually very concerned about whether they will experience pain, and if pain does occur, procedures that should be followed should be outlined. Estimates of rate of recovery and length of time for each treatment are also matters of concern to patients who are to start treatments. In private clinics or facilities where a fee for service may be immediate, fee structures should be made available to the patient prior to beginning treatments. Issues of how confidentiality will be maintained must be clearly stated. The patient is asked to sign the information sheet, indicating an understanding of the clinical process offered. Signatures are dated, witnessed by a third party, and countersigned by the attending clinician. A copy of the completed information sheet is given to the patient (see example 1). After the patient has read the information sheet and has had the opportunity to discuss any issues of concern with the health care professional, the patient may take the information sheet home and discuss it with family members. If there are aspects of their care that patients believe will not be addressed in the proposed care plan, they can discuss their concerns with the clinician. If the issues presented are beyond the scope of practice of the clinician and the patient wants another health care professional’s opinion, such referrals can be made free from prejudice. The process respects the personal power and autonomy of the patient, a factor critical to those who suffer. Often, the patient simply acknowledges his understanding of what will happen and is...