Disclosure of the diagnosis of dementia

Most ethical guidelines strongly promote disclosure of a diagnosis of dementia to the affected individual, based on the principle of autonomy. Nevertheless, codes of medical ethics allow for various interpretations of this issue and surveys of clinical practice illustrate that such disclosure is by no means the rule. We argue that diagnostic disclosure for persons with dementia must be considered a process that begins when cognitive impairment is first suspected and that evolves over time as information is obtained. Whenever possible and appropriate, this process should involve not only the affected individual but also their family and/or other current or potential future care providers. Once a diagnosis is established it should be disclosed in a manner consistent with the expressed wishes of the patient, using an individualized patient-centered approach that maintains the individual’s personal integrity. Diagnostic disclosure of dementia is a process that may require additional time as well as follow-up or referral to other specialists. We recommend that a progressive disclosure process be employed to address issues including: remaining diagnostic uncertainty, treatment options, future plans, financial planning, assigning power of attorney, wills and “living wills”, driving privileges and the need for eventual driving cessation, available support services, and potential research participation. The potential for adverse psychological consequences to diagnostic disclosure must be assessed and these should be addressed through education and support of the patient and their family/caregivers throughout the diagnostic disclosure process. At present, few data are available regarding patients’ perspectives on the diagnostic disclosure process and its consequences. This limitation and the apparent discrepancies in physician and caregiver opinions about the disclosure process, make it incumbent upon health care professionals to evaluate the diagnostic disclosure process within their practice.     

Discussing living wills. A qualitative study of a German sample of neurologists and ALS patients

Patients suffering from amyotrophic lateral sclerosis (ALS) eventually lose their ability to communicate their treatment preferences in later stages of the disease. A living will enables ALS patients to specify their choices concerning life-sustaining treatment in advance. Our premise was that completion of a living will should be preceded by a discussion between patient and physician. We conducted a qualitative study of a sample of 15 neurologists and 15 ALS patients from two neurology centers in Germany. Our aim was to explore how discussions about living wills are undertaken. Data analysis followed grounded theory techniques. Our findings showed that both the patients and the physicians considered living wills to be closely connected to forthcoming death. Physicians waited for respiratory failure to occur before they informed ALS patients about living wills, an information strategy that we called the "wait-and-see-policy". The patients completed their living will when they had accepted the hopelessness of their disease. They mostly used living will forms and did not see the necessity to set down disease-specific preferences. They intended to wait for symptoms to emerge before they made the decision about whether or not to accept life-sustaining treatment. The patients as well as the physicians pursued a wait-and-see policy towards end-of-life care, thus weakening the purpose of living wills. Our results point to the necessity and importance of an open and honest patient-physician communication which is a prerequisite for the discussion of living wills.     

Characteristics of primary care visits for individuals with severe mental illness in a national sample

Individuals with severe mental illness (SMI) are at risk for inadequate general medical and preventive care, but little is known about their visits for primary care. We performed a cross-sectional analysis of primary care physician visits from the National Ambulatory Medical Care Survey (NAMCS) 1993–1998 and compared visit characteristics for patients with and without SMI. SMI was defined from ICD-9 diagnoses and medications. Primary care visits for patients with SMI were more likely to be return visits, were longer, and were more likely to have scheduled follow-up than for patients without SMI. Obesity, diabetes, and smoking were reported approximately twice as frequently in visits for patients with SMI compared to patients without SMI. The percent of visits with preventive counseling and counseling targeted at chronic medical conditions was similar for both groups. Likely appropriate to their complex needs, patients with SMI using primary care tend to have more return visits, longer time with the physician and are more often scheduled for follow-up care; their preventive counseling appears similar to non-SMI visits.     

Psychiatry and family medicine: the McMaster approach

Family physicians may spend up to 50% of their time dealing with emotional problems but will refer less than 10% of these cases for psychiatric treatment. This paper describes an approach developed at McMaster University which emphasizes the importance of understanding the needs of family physicians and helping them make optimum use of available psychiatric services. Such an approach aims at increasing the comfort and expertise of family physicians in handling the problems they see on a regular basis, involving them actively in their patient's care after a referral, and offering relevant services that supplement those of the family physician, while monitoring and correcting problems that can arise when the two specialties work together. The implications that this has on the training of family medicine and psychiatry residents are discussed as well as ways in which continuing education can be provided for family physicians in community practice.     

A study of physician preferences in the management of depression in the general medical setting

Although more than 30% of ambulatory medical patients are depressed, little is known about how their depression is managed in the primary care setting. We surveyed 282 primary care physicians at two internal medicine and four family medicine programs. We asked these physicians to describe how they actually managed depression in their depressed medical patients and how they would manage ten hypothetical depressed medical patients. Demographic and attitudinal data were also obtained. Physicians reported that they utilized a wide variety of treatments for their depressed patients. They indicated that they would recommend counseling twice as many depressed patients as they would recommend medicating or referring. Over 30% of the variance in self-reported preferences to recommend particular treatments for depression was accounted for by physician characteristics. Prior experience with a treatment strategy was a significant factor in predicting a recommendation for future use of a treatment independent of other considerations such as endorsement of positive attitudes about the efficacy or benefits of a treatment. Prior experience was also more important than physician sociodemographics as a predictive variable. The clinical and educational implications of these findings for psychiatrists and primary care physicians are discussed.     

Treatment of depression in Parkinson's disease

Depression is an important and common nonmotor feature of Parkinson's disease (PD) that is associated with significant disability and a negative impact on quality of life. The physician should remain vigilant for symptoms of depression as they may be mistaken for the progression of Parkinson's disease itself. Transient dysphoria that occurs during 'off' periods in fluctuating PD patients must be distinguished from true depression. Antidepressant therapy should be instituted if depression is interfering with the patient's daily function. The use of serotonin reuptake inhibitors and tricyclic antidepressants in the treatment of depression in PD is widespread in clinical practice. Dopamine agonists may be effective in the treatment of milder depression as well. Individual or family counseling may be helpful. In patients with severe depression who are refractory to antidepressant medications, a series of electroconvulsive treatments can be lifesaving. Nonconventional therapies such as transcranial magnetic stimulation are being investigated.     

Treating individuals with eating disorders in family practice: a needs assessment

With their myriad of serious and occasionally life-threatening physical sequelae, in addition to their complex emotional issues, individuals with eating disorders can be among the most challenging a physician may see in primary practice. A two-page, 10-item survey based on a literature review of family physicians' experiences with individuals with eating disorders was distributed to a sample of 500 Manitoba family physicians. Two hundred and one surveys were returned for a province-wide return rate of 40%. Eighty percent of physicians who saw individuals with eating disorders felt there were some patients they were unable to treat for a variety of reasons including lack of physician skills, limited resources, problems with patient cooperation, the severity of the patient's illness, and a lack of time to deal with the demands of an eating disordered patient. The services most often provided by the physicians included medical management of symptoms, referral to specialized services, information on nutrition and exercise, and limited counseling. Referrals were most often made to psychiatrists, dieticians, Winnipeg's Eating Disorder Program, and community mental health workers. The strong response indicates that eating disorders are a serious concern in primary practice. The role of the family physician is very much dependent upon the individual physician's skills and degree of comfort in dealing with the disorders. Continuing education is seen as vital to improve diagnostic skills and enhance physicians' level of comfort. More support for physicians in the short term and enhanced interdisciplinary programming in the longer term are crucial in meeting patients' complex needs.     

Aging parents as caregivers of mentally ill adult children: an emerging social problem

More than one-third of long-term mentally ill adults live with their families, most with aging parents, a situation that accentuates the need for residential alternatives to home care for deinstitutionalized patients who will out-live their caregivers. The role of parenting mentally disabled adults may also impose undue stress on elderly persons. Objective and subjective parental burden, including fears for the patient's future, are increased by the mental health system's failure to offer education, support, training in problem solving, and a collaborative role in discharge planning to family members. Social policy implications of considering families as primary caregivers include the danger that government will be relieved of responsibility for care of the mentally ill, the creation of a potentially at-risk population among aging parents and other family members affected by the stresses of caregiving, and the reduction of the patient's potential for independent living.     

Physician empathy: definition,components, measurement,and relationship to gender and specialty

OBJECTIVE: There is a dearth of empirical research on physician empathy despite its mediating role in patient-physician relationships and clinical outcomes. This study was designed to investigate the components of physician empathy, its measurement properties, and group differences in empathy scores. METHOD: A revised version of the Jefferson Scale of Physician Empathy (with 20 Likert-type items) was mailed to 1,007 physicians affiliated with the Jefferson Health System in the greater Philadelphia region; 704 (70%) responded. Construct validity, reliability of the empathy scale, and the differences on mean empathy scores by physicians' gender and specialty were examined. RESULTS: Three meaningful factors emerged (perspective taking, compassionate care, and standing in the patient's shoes) to provide support for the construct validity of the empathy scale that was also found to be internally consistent with relatively stable scores over time. Women scored higher than men to a degree that was nearly significant. With control for gender, psychiatrists scored a mean empathy rating that was significantly higher than that of physicians specializing in anesthesiology, orthopedic surgery, neurosurgery, radiology, cardiovascular surgery, obstetrics and gynecology, and general surgery. No significant difference was observed on empathy scores among physicians specializing in psychiatry, internal medicine, pediatrics, emergency medicine, and family medicine. CONCLUSIONS: Empathy is a multidimensional concept that varies among physicians and can be measured with a psychometrically sound tool. Implications for specialty selection and career counseling are discussed.     

Complaints of informal caregivers providing home care for dementia patients: the Pixel study

CONTEXT: Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients. OBJECTIVES: To determine the complaints of home caregivers, how they are interrelated and what causes them. RESOURCES: Self-administered questionnaire of 42 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the attending physician, usually a specialist, freelance or salaried doctor. RESULTS: 408 sets of records were compiled, concerning 236 demented women (77.1 +/- 0.47 years) and 172 demented men (75.7 +/- 0.57 years). In two-thirds of cases, the main caregiver was a woman aged 60.6 +/- 0.79 years. Female caregivers were more vulnerable than male caregivers. The most frequent caregiver complaint, regardless of the stage of the disease, concerned loss of motivation and withdrawal. The patient's awareness of the disorder was accompanied by a reduction in motor dysfunction and aggressiveness, but associated with a higher frequency of the complaint regarding loss of motivation reported by the caregiver. The caregivers' problems concerned mainly the absence of relief and the impossibility of having any time to themselves. Caregivers' requests for information concerned medical information, care structures and day care facilities. DISCUSSION: The attending physician comes into close contact with the patient, but must take into account the patient's environment. The physician can provides a separate analysis to the caregiver and does not completely answer to certain family questions or needs. He or she is not the family's prime source of information. The caregivers' requirements relate to the areas that are the attending physician's responsibility: the development and characteristics of the disease. The caregiver is anxious about the patient's future and is trapped by his or her involvement in the care, suffering greatly from the lack of relief. CONCLUSIONS: It is necessary to change the focus of home care for dementia patients to fit the context in which they live and to allow for periods of relief for home caregivers.     

Captive patients, captive doctors: clinical dilemmas and interventions in caring for patients in managed health care.

This article explores common clinical dynamics resulting from the denial of choice that many patients experience in managed health care and proposes clinical adaptations for the treating or consulting psychiatrist. Patients who feel they have been denied the right to choose their health plan, treatment setting, or personal physician commonly go through a subjective experience analogous to that of being held captive. This sense of captivity can exacerbate the feelings of helplessness and hopelessness brought on by serious illness. It can also intensify the patient's feelings of alienation and betrayal when managed care constrains patient-physician decision making by limiting treatment options. These dynamics can lead to identifiable transference reactions and, in turn, to physician countertransference. Psychiatrists can do much to ameliorate these potentially destructive dynamics both as treating therapists and as consultants to general physicians. Indications for consultation or intervention are analyzed and specific clinical strategies to enhance the patient's decision-making capacity throughout the introductory, ongoing, and termination phases of the treatment alliance are reviewed.     

Problems with managed psychiatric care without a psychiatrist-manager.

Seven critical cases in which patients at major psychiatric risk received less than adequate managed care are presented. Five patients committed suicide, one patient progressed to psychosis, and one became permanently physically disabled. In all seven cases, the patient's care was managed by a non-psychiatrist--by a bachelor's-level therapist or case manager in three cases and a family physician, a cardiologist, a nurse, and a master's-level social worker in the other four cases. In the cases in which psychiatric consultation was sought, psychiatrists, either in the managed care setting or outside it, were used mainly as psychopharmacological consultants. In three cases, their recommendations were not followed or were poorly implemented. In six cases, mismanagement of psychotropic medications was a factor in the fatal or serious outcome.     

Family members' perceptions of communications in late stage cancer

A study of patterns of communications in families with a terminal cancer patient being treated at three urban institutions revealed that may first-order relatives (spouses, children, siblings) of patients did not have a communication link to the physician, especially if direct communication was not established at the time of diagnosis. Family members were frequently critical of the way information was communicated, yet relied upon the physician's interpretation of the patient's status to form their own opinion of the patient's future. Intra-familial communications regarding illness and dying were frequently discordance and guarded, leading to preceptions that the patient was withdrawing, and fostering a reliance upon the hospital for terminal care. More than half of the family members were uncomfortable visiting the patient in the hospital, experiencing feelings of helplessness, or sensing helplessness in the patients. Bearing the patient's pain was seen as particularly difficult.     

Genetic advances in central nervous system malformations in the fetus and neonate

Malformations of the central nervous system (CNS) are commonly encountered by the pediatric neurologist when called to evaluate a fetus or newborn. Such malformations may be isolated or appear as part of a genetic syndrome. In the past few years there have been great advances in identifying the genes and genetic alterations for many isolated CNS malformations and syndromes with CNS malformations. Therefore, it is important to look for associated anomalies in any infant with a CNS malformation, as well as consideration of the rest of the family. We have chosen four malformations (holoprosencephaly, hydrocephalus, lissencephaly, and schizencephaly) to serve as a paradigm for genetic malformations of the CNS. Understanding the underlying genetic etiology of a disorder allows us to give more accurate recurrence risk counseling, to better estimate potential complications, and to better manage the patient's care. As research continues, additional malformations and syndromes will be understood on the genetic level, and combining this genetic information with neurologic understanding will translate into better medical care for the patient.     

Cooperation between mental health professionals and doctors in a Balint-oriented supervision group

A Balint-oriented supervision group for physicians is described concentrating on the study of the patient-doctor relationship, the recognition and diagnosis of psychiatric problems, and the planning of psychiatric treatment. The group includes five general practitioners, a gynecologist, a dermatologist, a psychiatrist and a psychologist, who have met once a month for an hour over a period of 12 years. Interaction between the physicians and the mental health professionals is illustrated by two clinical examples. The group helps the physician recognize, tolerate and use his countertransference feelings, and facilitates the examination and treatment of patients suffering from psychiatric problems. In Balint-oriented group work, the focus can be moved from physical symptoms to include observation of the patient's emotional life and significant object relations, to the factors that are crucial for his psychological balance. This kind of holistic observation in the examination and treatment of psychiatric problems is as important as appropriate laboratory investigations in the diagnosis and care of physical diseases.     

Analysis of 14 individuals who requested predictive genetic testing for hereditary neuromuscular diseases]

Predictive genetic testing for hereditary neuromuscular diseases is a delicate issue for individuals at risk and their families, as well as for medical staff because these diseases are often late-onset and intractable. Therefore careful pre- and post-test genetic counseling and psychosocial support should be provided along with such genetic testing. The Division of Clinical and Molecular Genetics was established at our hospital in May 1996 to provide skilled professional genetic counseling. Since its establishment, 14 individuals have visited our clinic to request predictive genetic testing for hereditary neuromuscular diseases (4 for myotonic dystrophy, 6 for spinocerebellar ataxia, 3 for Huntington's disease, and 1 for Alzheimer's disease). The main reasons for considering testing were to remove uncertainty about the genetic status and to plan for the future. Nine of 14 individuals requested testing for making decisions about a forthcoming marriage or pregnancy (family planning). Other reasons raised by the individuals included career or financial planning, planning for their own health care, and knowing the risk for their children. At the first genetic counseling session, all of the individuals expressed hopes of not being a gene carrier and of escaping from fear of disease, and seemed not to be mentally well prepared for an increased-risk result. To date, 7 of the 14 individuals have received genetic testing and only one, who underwent predictive genetic testing for spinocerebellar ataxia, was given an increased-risk result. The seven individuals including the one with an increased-risk result, have coped well with their new knowledge about their genetic status after the testing results were disclosed. None of them has expressed regret. In pre-test genetic counseling sessions, we consider it quite important not only to determine the psychological status of the individual, but also to make the individual try to anticipate the changes in his/her life upon receiving an increased-risk or a decreased-risk result. Sufficient time should be taken to build a good relationship between the individual and his/her family and the medical staff during pre-test counseling sessions. This will help the individuals feel satisfied with their own decisions for the future, whether they receive genetic testing or not.     

Genetic risk perception and reproductive decision making among people with epilepsy

We investigated estimated offspring risk among people with epilepsy and factors important in the family‐planning process. Data were collected for 88 participants using a questionnaire assessing perceived risk of offspring to develop epilepsy, importance of factors in the reproductive decision‐making process, decision to have fewer children, and association between risk perception and family planning decisions. Thirty‐four percent of participants had fewer children because of their epilepsy. Concerns about the ability to care for a child (p < 0.0001) and passing epilepsy onto a child (p = 0.003) were associated with the decision to have fewer children. The mean estimated risk of offspring to develop epilepsy was 26%, a 4‐fold increase over estimated population risks. Genetic counseling may be beneficial for people with epilepsy, given the considerable overestimation of offspring risk.     

Palliative care for families: remembering the hidden patients.

Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They observe care that the patient receives, provide care for the patient, and receive support from health professionals in the form of information, counselling, or practical assistance. As they witness and participate in the patient's care, they judge the quality of care that the patient receives. They often see themselves as the patient's care advocates and may harbour regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members' psychological and physical health; recognition of this has coined the term "hidden patients." This article briefly synthesizes empirical work that suggests how to best support families in a palliative care context. We discuss how to define the family, emphasizing a systems approach to family care. We describe the impact of the illness on the family in terms of family members' health, family communication issues, psychological issues, needs for information, physical care demands, and family costs of caring.     

Patient perceptions of multiple sclerosis-related care: comparisons by practice specialty of principal care physician

Do people with multiple sclerosis who receive the majority of their care from neurologists perceive access to and quality of their care differently than people receiving their care from medical internists, family/general practitioners, and other types of physicians? The objective of this study is to identify any patient-identified differences in MS-related care by the practice specialty of the principal care physician, as well as differences by practice specialty in satisfaction with access to physician services and differences in patient perceptions of quality. Data were collected by surveying 1,518 people with MS throughout the United States and grouped by practice specialty of principal care physician (neurologist, internal medicine, family/general practice, and other physicians). Significant differences were observed by practice specialty of the principal care physician in physician understanding of various aspects of MS, satisfaction with access to MS-focused care, and quality of MS-focused care, with neurologists associated with better patient perceptions. Patients consider MS-related care superior when it is delivered by neurologists compared to MS patients receiving care from medical internists, family/general practitioners, and other physicians.     

Does psychiatric care by family practitioners reduce the cost of general medical care?

This is the first "impact" type of economic study of psychiatric/counseling services from general practitioners. The paper analyzes a province-wide database that collates statistical data from all inpatient and outpatient psychiatric services as well as from private physicians. This paper asks whether psychiatric services from family physicians also reduce the overall costs of medical care. This research supports the general research findings that medical costs are lower after psychiatrists' care. ECT patients show a marked reduction in their medical costs. Patients with psychotherapy/counseling from family physicians did not show statistically significant reductions in overall medical costs. We need new classifications for the kinds of mental disorders seen in primary care settings.