Incorporating advance care planning into family practice [see comment

Despite widespread support for the concept of advance care planning, few Americans have a living will or a health care proxy. Advance care planning offers the patient the opportunity to have an ongoing dialog with his or her relatives and family physician regarding choices for care at the end of life. Ultimately, advance care planning is designed to clarify the patient's questions, fears and values, and thus improve the patient's well-being by reducing the frequency and magnitude of overtreatment and undertreatment as defined by the patient. An advance directive consists of oral and written instructions about a person's future medical care in the event he or she becomes unable to communicate. There are two types of advance directives: a living will and a health care power of attorney. Family physicians are in an ideal position to discuss advance care plans with their patients. By introducing the subject during a routine office visit, physicians can facilitate a structured discussion of the patient's wishes for end-of-life care. At the next visit, further discussion can include the patient and his or her proxy. A document that clearly delineates the patient's wishes is then developed. The patient should be assured that the directive can be changed at any time according to the patient's wishes. The advance care plan should be reviewed periodically to make sure the specifications continue to be in line with the patient's wishes.     

Advance directives: the New Zealand context

Advance directives convey consumers' wishes about accepting or refusing future treatment if they become incompetent. They are designed to communicate a competent consumer's perspective regarding the preferred treatment, should the consumer later become incompetent. There are associated ethical issues for health practitioners and this article considers the features that are relevant to nurses. In New Zealand, consumers have a legal right to use an advance directive that is not limited to life-prolonging care and includes general health procedures. Concerns may arise regarding a consumer's competence and the document's validity. Nurses need to understand their legal and professional obligations to comply with an advance directive. What role does a nurse play and what questions arise for a nurse when advance directives are discussed with consumers? This article considers the cultural dimensions, legal boundaries, consumers' and providers' perspectives, and the medical and nursing positions in New Zealand.     

Is the ANA Guilty of Paternalism in its Guidelines on Withdrawing or Withholding Food and Fluid?

The ANA Committee on Ethics's Guidelines on Withdrawing or Withholding Food and Fluid (1988) delineates those circumstances under which withholding is normally permissible. The Guidelines direct nurses to respect the wishes of competent adults. What of adults who are considered incompetent? Can they make decisions to refuse food and fluids? The Guidelines ask nurses to judge patient competence and the merit of the reasons behind the decisions. This suggests paternalism. A more appropriate role of the nurse might be to focus on helping the patient to make a decision, rather than on the merit of the decision itself.     

The proactive sexual health history

Family physicians must proactively address the sexual health of their patients. Effective sexual health care should address wellness considerations in addition to infections, contraception, and sexual dysfunction. However, physicians consistently underestimate the prevalence of sexual concerns in their patients. By allocating time to discuss sexual health during office visits, high-risk sexual behaviors that can cause sexually transmitted diseases, unintended pregnancies, and unhealthy sexual decisions may be reduced. Developing a routine way to elicit the patient's sexual history that avoids judgmental attitudes and asks the patient for permission to discuss sexual function will make it easier to gather the necessary information. Successful integration of sexual health care into family practice can decrease morbidity and mortality, and enhance well-being and longevity in the patient.     

When patients and families disagree

Advance care planning is meant to safeguard the patient's autonomy when that individual is unable to make his or her own healthcare decisions. Yet, families do not always agree with the specific wishes of their family member when there is a need to make critical decisions, such as continuing treatment because of some new research protocol or providing comfort through palliative care. When there are patient-family disagreements, the decision-making process is even more complicated if the patient is fully able to participate because competent patients have the right to make their own healthcare decisions. In addition, family members may not agree with each other. Thus, even though healthcare providers want to respect their patients' wishes, they are uncertain about the most appropriate course of action. This article discusses why families and patients may disagree, describes relevant ethical perspectives for understanding the issues, and identifies possible strategies to help nurses address these ethical dilemmas. Valuing the patient as a person, the vulnerability of the patient, whose interests should prevail, and quality of life are pertinent and overlapping ethical issues in this case. Possible strategies that nurses can implement to address the "thorny" issues raised by patient-family disagreements include helping the patient to remain in control, facilitating responsible decision making, requesting an ethics consultation, and requesting a palliative care consultation.     

Sharing electronic health records: the patient view

The introduction of a national electronic health record system to the National Health Service (NHS) has raised concerns about issues of data accuracy, security and confidentiality. The primary aim of this project was to identify the extent to which primary care patients will allow their local electronic record data to be shared on a national database. The secondary aim was to identify the extent of inaccuracies in the existing primary care records, which will be used to populate the new national Spine. Fifty consecutive attenders to one general practitioner were given a paper printout of their full primary care electronic health record. Participants were asked to highlight information which they would not want to be shared on the national electronic database of records, and information which they considered to be incorrect. There was a 62% response rate (31/50). Five of the 31 patients (16%) identified information that they would not want to be shared on the national record system. The items they identified related almost entirely to matters of pregnancy, contraception, sexual health and mental health. Ten respondents (32%) identified incorrect information in their records (some of these turned out to be correct on further investigation). The findings in relation to data sharing fit with the commonly held assumption that matters related to sensitive or embarrassing issues, which may affect how the patient will be treated by other individuals or institutions, are most likely to be censored by patients. Previous work on this has tended to ask hypothetical questions concerning data sharing rather than examine a real situation. A larger study of representative samples of patients in both primary and secondary care settings is needed to further investigate issues of data sharing and consent.     

Respecting the wishes of patients in intensive care units

This study examined why intensive care unit (ICU) nurses experience difficulties in respecting the wishes of patients in end-of-life care in Japan. A questionnaire survey was conducted with ICU nurses working in Japanese university hospitals. The content of their narratives was analyzed concerning the reasons why the nurses believed that patients' wishes were not respected. The most commonly stated reason was that patients' wishes were impossible to realize, followed by the fact that decision making was performed by others, regardless of whether the patients' wishes were known, if the death was sudden, and time constraints. Many nurses wanted to respect the wishes of dying patients, but they questioned how patients die in ICUs and were therefore faced with ethical dilemmas. However, at the same time, many of the nurses realized that respecting patients' wishes about end-of-life care in an ICU would be difficult and that being unable to respect these wishes would often be unavoidable. The results thus suggest that there has been insufficient discussion about respecting the wishes of patients undergoing intensive care.     

Informational and emotional support received by relatives before and after the cancer patient's death.

The purpose of this study is to find out what cancer patients' relatives think about the informational and emotional support they receive from health care professionals before and after the patient's death. The data were collected with a structured questionnaire administered to relatives of cancer patients who had died in one of seven health care centres and in one hospice in south-western Finland during a 2-year period before data collection. The questionnaires were sent out by staff to one family member of each adult patient (n=910). The final sample comprised 376 family members, most of whom were the deceased patient's spouses or children. Relatives felt that they had received fairly much support from health care professionals, both before and after the patient's death. Before the patient's death most of the information received by relatives concerned the patient's illness and treatment. They received less information about forms of financial support available. Communication had been honest and the information provided was easy to understand and based upon the relatives' needs. Emotional support before the patient's death consisted mainly of acceptance of the relative and listening to what relatives had to say. However, relatives had only limited opportunity to talk about their difficulties in everyday life. After the death of the patient, staff had mostly supported relatives by showing their acceptance of them and by giving them the time they wanted. Some background variables for both patients and relatives correlated with the support received by relatives before and after the patient's death.     

How do patients view the role of the primary care physician in inpatient care?

As hospitalized patients are increasingly cared for by physicians who are not their primary care physicians, discontinuity of care occurs when patients are sickest. We sought to determine hospitalized patients' knowledge, preferences, and satisfaction regarding the involvement of their primary care physician in their inpatient care. We conducted a cross-sectional questionnaire of 73 patients cared for by inpatient physicians and 12 relatives of such patients on an inpatient general medical service in a teaching hospital. Eligible patients were those admitted to the care of an inpatient physician other than their primary care provider (PCP), who stayed in the hospital for >1 day. If these patients were too sick to be interviewed or did not speak English, a relative knowledgeable about their medical care was interviewed. In all, 87% of patients had a primary care physician. Of these, 33% had some contact with their PCP while in the hospital. A total of 66% of respondents were satisfied with the contact they or their relative had with the PCP. Some 61% of respondents knew that communication had occurred between the inpatient and PCP. Respondents generally had positive opinions of their hospital care. However, most agreed that patients receive better care from and have more trust in physicians they have known for a long time, compared with those they have just met. About 50% of respondents believed that a PCP (rather than a separate hospital physician) should inform a patient of a serious diagnosis or discuss choices between medical and surgical management. Patients under the care of an inpatient physician want contact with their PCP and want good communication between the PCP and hospital doctors. Systems should be established to facilitate communication between in patient and primary care physicians, and between PCPs and patients.     

Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: a multicenter study in 13 hospitals in Flanders, Belgium

ContextDeath is often preceded by medical decisions that potentially shorten life (end-of-life decisions [ELDs]), for example, the decision to withhold or withdraw treatment. Respect for patient autonomy requires physicians to involve their patients in this decision making.ObjectivesThe objective of this study was to examine the involvement of advanced lung cancer patients and their families in ELD making and compare their actual involvement with their previously stated preferences for involvement.MethodsPatients with Stage IIIb/IV non-small cell lung cancer were recruited by physicians in 13 hospitals and regularly interviewed between diagnosis and death. When the patient died, the specialist and general practitioner were asked to fill in a questionnaire.ResultsEighty-five patients who died within 18 months of diagnosis were studied. An ELD was made in 52 cases (61%). According to the treating physician, half of the competent patients were not involved in the ELD making, one-quarter shared the decision with the physician, and one-quarter made the decision themselves. In the incompetent patients, family was involved in half of cases. Half of the competent patients were involved less than they had previously preferred, and 7% were more involved. Almost all of the incompetent patients had previously stated that they wanted their family involved in case of incompetence, but half did not achieve this.ConclusionIn half of the cases, advanced lung cancer patients—or their families in cases of incompetence—were not involved in ELD making, despite the wishes of most of them. Physicians should openly discuss ELDs and involvement preferences with their advanced lung cancer patients.     

The Nurse Practitioner's Role

Decisional incapacity is the inability to make decisions for oneself caused by mental or physical impairment. With technologic advances in health care and the growing proportion of elderly in American society, the problem of decisional incapacity occurs more frequently. In the past, medical decision making was based on the principle of beneficence, and the judgment of others was used to determine medical interventions. The current trend is to base decisions as much as possible on the principle of patient autonomy. Advance directives allow for the greater use of this principle.
The primary care nurse practitioner (NP) can take an active role in promoting patient autonomy by helping the adult patient plan for decisional incapacity. By including the value history as a routine part of the health history, the NP can help patients identify their beliefs, values, and attitudes about health care. This documented value history can then be used to provide evidence of a patient's wishes should he or she become decisionally incapacitated.     

Older Korean people's desire to participate in health care decision making

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but this was higher when family members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect.     

Health care of the gay male patient.

A significant number of men presenting to any primary care physician are gay or have had sexual encounters with members of their own sex. It is important, therefore, that the physician be familiar with particular medical care issues commonly encountered in this population and that she or he also be aware of psychosocial issues that impact on the gay patient's well-being and on the physician's ability to provide competent primary care.     

Depression in the older adult

Older adults who visit the primary care physician's office often exhibit depressive symptoms. The challenge for the physician and other office staff is to determine what these symptoms mean: Loneliness? Fear? Grief? A consequence of a coexisting medical condition? A DSM depressive disorder? Or something else? Addressing ambiguous symptoms that may represent a depressive disorder may be difficult in the busy office setting. The findings of one recent study suggest that it is not lack of knowledge that impedes the recognition of depression but rather the conditions under which clinical decision making occurs. The process of ruling out medical diagnoses and opening the door to consider a mental health diagnosis can be time-consuming and circuitous, especially if the clinician is not already familiar with the patient or if the clinician who is familiar with the patient perceives insufficient time to deal with the issues raised by opening the door. The fundamental challenge for the primary care clinician as aging baby boomers inundate the health care system is to restructure office practice to recognize, assess, and manage geriatric syndromes including depression. The underlying principle for successful restructuring is acknowledging that these syndromes have multiple causes requiring multifaceted interventions. Operationally, doing simple things consistently and well may have significant impact. By consistently recognizing biologic and psychosocial risk factors for depression, by taking a careful history (including the two-question screen), and by conducting a thorough physical examination, the office-based clinician will generally have a strong clinical hunch about the presence or absence of a depressive disorder and any comorbid medical and neuropsychiatric conditions. Armed with this information, additional laboratory and brain imaging studies and subsequent management strategies are straightforward.     

When asked, patients tell: disclosure of sensitive health-risk behaviors.

OBJECTIVES: National health care organizations recommend routinely screening patients for behavioral health risks, the effectiveness of which depends on patients' willingness to disclose risky behaviors. This study aimed to determine if primary care patients' disclosures of potentially stigmatizing behaviors would be affected by (1) their expectation about whether or not their physician would see their disclosures and (2) the assessment method. METHODS: One thousand nine hundred fifty-two primary care patients completed a questionnaire assessing human immunodeficiency virus (HIV), alcohol, drug, domestic violence, tobacco, oral health, and seat belt risks; half were told their responses would be seen by the researcher and their physician and half were told that their responses would be seen by the researcher only. Patients were randomly assigned to one of five assessment methods: written, face-to-face, audio-based, computer-based, or video-based. RESULTS: Across all risk areas, patients did not disclose differently whether or not they believed their physician would see their disclosures. Technologically advanced assessment methods (audio, computer, and video) produced greater risk disclosure (4%-8% greater) than traditional methods in three of seven risk areas. CONCLUSIONS: These findings suggest patients are not less willing to disclose health risks to a research assistant knowing that this information would be shared with their physician and that a number of assessment methods can effectively elicit patient disclosure. Potentially small increases in risk disclosure must be weighed against other factors, such as cost and convenience, in determining which method(s) to use in different health care settings.     

Durable power of attorney for health care: planning for substitute decision making

Too frequently a relative who is not emotionally close to the patient and who does not know the patient's desires related to health care is authorized to make decisions for the unconscious or incompetent patient, while a non-relative who is intimately involved with the patient and knows the patient's health care desires has no authority to make these decisions. Health care providers must too often stand by helplessly as disinterested or malevolent relatives make these decisions, while caring, competent non-relatives are shut out of the decision-making process. Planning for substitute decision-making can reduce stress and uncertainty for the patient, for the family and for health care providers.     

Interacting with patients' family members during the office visit

The physician-patient relationship is part of the patient's larger social system and is influenced by the patient's family. A patient's family member can be a valuable source of health information and can collaborate in making an accurate diagnosis and planning a treatment strategy during the office visit. However, it is important for the physician to keep an appropriate balance when addressing concerns to maintain the alliance formed among physician, patient, and family member. The patient-centered medical home, a patient care concept that helps address this dynamic, often involves a robust partnership among the physician, the patient, and the patient's family. During the office visit, this partnership may be influenced by the ethnicity, cultural values, beliefs about illness, and religion of the patient and his or her family. Physicians should recognize abnormal family dynamics during the office visit and attempt to stay neutral by avoiding triangulation. The only time neutrality should be disrupted is if the physician suspects abuse or neglect. It is important that the patient has time to communicate privately with the physician at some point during the visit.     

The role of the family physician in the referral and management of hospice patients

Hospice is available for any patient who is terminally ill and chooses a palliative care approach. Because of the close relationship that primary care physicians often have with their patients, they are in a unique position to provide end-of-life care, which includes recognizing the need for and recommending hospice care when appropriate. The hospice benefit covers all expenses related to the terminal illness, including medication, nursing care, and equipment. Hospice should be considered when a patient has New York Heart Association class IV heart failure, severe dementia, activity-limiting lung disease, or metastatic cancer. Timely referrals are beneficial to both patient and hospice because of the cost related to initiating services and the time required to form a therapeutic relationship. Once the decision to refer to hospice is made, the family physician typically continues to be the patient's primary attending physician. The attending physician is expected to remain in charge of the patient's care, write orders, see the patient for office visits, and complete and sign the death certificate. Hospice, in turn, is a valuable physician resource when it comes to medication dosages, symptom management, and communication with patients and their families.