On being a patient

Kay Redfield Jamison and Richard Jed Wyatt Chapter, References

It is difficult to be a psychiatric patient, but a good doctor can make it less so. Confusion and fear can be overcome by knowledge and compassion, and resistance to treatment is often, although by no means always, amenable to change by intelligent persuasion. The devil, as the fiery melancholic Byron knew, is in the detail.

Patients, when first given a psychiatric diagnosis, are commonly both relieved and frightened—relieved because often they have been in pain and anxiety for a considerable period of time, and frightened because they do not know what the diagnosis means or what the treatment will entail. They do not know if they will return to the way they once were, whether the treatment they have been prescribed will or will not work, and, even if it does work, at what cost it will be to them in terms of their notions of themselves, potentially unpleasant side-effects, and the reactions of their family members, friends, colleagues, and employers. Perhaps most disturbing, they do not know if their depression, psychosis, anxieties, or compulsions will return to become a permanent part of their lives.

The specifics of what the doctor says, and the manner in which he or she says it, are critically important. Most patients who complain about receiving poor psychiatric care do so on several grounds: their doctors, they feel, spend too little time explaining the nature of their illnesses and treatment; they are reluctant to consult with or actively involve family members; they are patronizing, and do not adequately listen to what the patient has to say; they do not encourage questions or sufficiently address the concerns of the patient, they do not discuss alternative treatments, the risks of treatment, and the risks of no treatment, and they do not thoroughly forewarn about side-effects of medications.

Most of these complaints are avoidable. Time, although difficult to come by, is well spent early on in the course of treatment when confusion and hopelessness are greatest, non-compliance is highest, and the possibility of suicide substantially increased. Hope can be realistically extended to patients and family members, and its explicit extension is vital to those whose illnesses have robbed them not only of hope, but of belief in themselves and their futures. The hope provided needs to be tempered, however, by an explication of possible difficulties yet to be encountered: unpleasant side-effects from medications, a rocky time course to meaningful recovery which will often consist of many discouraging cycles of feeling well, only to become ill again, and the probable personal, professional, and financial repercussions that come in the wake of having a psychiatric illness.

It is terrifying to lose one's sanity or to be seized by a paralysing depression. No medication alone can substitute for a good doctor's clinical expertise and the kindness of a doctor who understands both the medical and psychological sides of mental illness. Nor can any medication alone substitute for a good doctor's capacity to listen to the fears and despair of patients trying to come to terms with what has happened to them.

Doctors need to be direct in answering questions, to acknowledge the limits of their understanding, and to encourage specialist consultations when the clinical situation warrants it. They also need to create a therapeutic climate in which patients and their families feel free, when necessary, to express their concerns about treatment or to request a second opinion. Treatment non-compliance, one of the major causes of unnecessary suffering, relapse, hospitalization, and suicide, must be addressed head-on. Young males, early in the course of their illness, are particularly likely to stop medication against medical advice, and the results can be lethal. (!2,) Unfortunately, doctors are notoriously variable in their ability to assess and predict compliance in their patients. (3)

Asking directly and often about medication concerns, scheduling frequent follow-up visits after the initial diagnostic evaluation and treatment recommendation, and encouraging adjunctive psychotherapy, or involvement in patient support groups, can make a crucial difference in whether or not a patient takes medication in a way that is most effective. Aggressive treatment of unpleasant or intolerable side-effects, minimizing the dosage and number of doses, and providing ongoing education about the illness and its treatment are likewise essential, if common-sense, ways to avert or minimize non-compliance.

Education is, of course, integral to the good treatment of any illness, but this is especially true when the illnesses are chronic or tend to recur. Patients and their family members should be encouraged to write down any questions they may have, as many individuals are intimidated once they find themselves in a doctor's office. Any information that is given orally to patients should be repeated as often as necessary (due to the cognitive difficulties experienced by many psychiatric patients, especially when acutely ill or recovering from an acute fitness) and, whenever feasible, provided in written form as well. Additional information is available to patients and family members in books and pamphlets obtainable from libraries, bookstores, and patient support groups, as well as from audiotapes, videotapes, and the Internet.'24,) Visual aids, such as charts portraying the natural course of the treated and untreated illness, or the causes and results of sleep deprivation and medication cessation, are also helpful to many.and 77

Patients, when they are well, often benefit from a meeting with their family members and their doctor which focuses upon drawing up contingency plans in case their illness should recur. Such meetings may include what is to be done in the event that hospitalization is required and the patient refuses voluntary admission, a discussion of early warning signs of impending psychotic or depressive episodes, methods for regularizing sleep and activity patterns, techniques to protect patients financially; and ways to manage suicidal behaviour should it occur. Suicide is the major cause of premature death in the severe psychiatric illnesses, (89) and its prevention is of first concern. Those illnesses most likely to result in suicide (the mood disorders, comorbid alcohol and drug abuse, and schizophrenia) need to be treated early, aggressively, and often for an indefinite period of time. (2,4,!9 The increasing evidence that treatment early in psychiatric illness may improve the long-term course needs to be considered in light of the reluctance of many patients to stay in treatment.

No-one who has treated or suffered from mental illness would minimize the difficulties involved in successful treatment. Modern medicine gives options that did not exist even 10years ago, and there is every reason to be expect that improvements in psychopharmacology and diagnostic techniques will continue to develop at a galloping pace. Still, the relationship between the patient and doctor will remain central to the treatment as Morag Coate wrote 35 years ago in Beyond All Reason:(10>

Because the doctors cared, and because one of them still believed in me when I believed in nothing, I have survived to tell the tale. It is not only the doctors who perform hazardous operations or give life-saving drugs in obvious emergencies who hold the scales at times between life and death. To sit quietly in a consulting room and talk to someone would not appear to the general public as a heroic or dramatic thing to do. In medicine there are many different ways of saving lives. This is one of them.

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