Advance directives.

Advance directives concerning treatment have been firmly established in our society. Reactions to them, however, are varied, especially when the health care provider possesses a different belief about the care, or non-provision of care, in a particular situation. It is important for the neuroscience nurse to be in touch with thoughts and feelings concerning a patient's treatment choice, and, when necessary, to seek input and support about those concerns. Clearly, if the nurse cannot carry out the patient's wishes, the nurse can use applicable state law provisions supported by the Patient Self-Determination Act, and request not to participate in the care of that patient. If, however, the neuroscience nurse does provide care, ethically and legally it must be done in accordance with the patient's expressed choices.     

Advance directives and dementia

Since the 1990 Patient Self-Determination Act, increasing numbers of adults are completing advance directives (ADs), but unfortunately many adults seen in a dementia evaluation program have not completed an AD. This article discusses the issue of individuals with dementia completing ADs. Situational factors that frame this issue are the stage of dementia, degree of certainty of an individual's wishes for end-of-life care, the decision-making act required by care providers, and the degree of contentment or distress experienced by an individual with dementia. Several investigators have demonstrated successful completion of ADs by individuals with mild and moderate dementia. A nurse's knowledge about the stages of dementia is essential to helping an individual through the AD decision-making process. Nurses caring for individuals with dementia should assess decision-making context; recognize the emotions of family, friends, and staff; understand the substance and logic of AD requests; and support individuals and their decisions.     

Advance directives: implementation into clinical practice

Legislation recently passed by Congress will require health care organizations to maintain specific procedures regarding the right of patients to prepare advance directives. Previous studies have shown that patients may wish to discuss issues regarding future terminal care, but few patients complete living wills or durable powers of attorney. Although physicians often have positive attitudes regarding advance directives, the majority do not initiate discussions regarding these issues. The new regulations may increase the awareness of directives and increase the documentation of patients' desires into the medical record. However, the widespread acceptance of the advance directive and its impact on health care decisions remain to be seen.     

Advance directives and personality-changing illness

An advance decision (AD) to refuse treatment allows an individual to express his/her wishes regarding future treatment in the event of losing capacity to make decisions. Relevant and applicable ADs are legally binding, even when refusal of the specfied treatment will lead to the patient's death; but health professionals are required under the Mental Capacity Act to consider a number of factors in deciding whether a patient's AD should be followed. The decision for the health professional is not always clear-cut. For example, what happens when Alzheimer's changes an indivdual's personality so much that they seem to be a different person: does their previous decision still stand? This article examines the criteria to be considered in such a case, and highlights the wider principles to be followed in making any decision on whether to follow an individual's instruction to refuse treatment.     

Advance directives and assisted suicide

Kemper and Murtaugh calculate what they term “lifetime use of nursing home care.” This is a measure of the time spent by the average person in a nursing home over a lifetime. Their conclusion, in qualitative form, is that the risk of entering a nursing home and spending a long time in a nursing home is “substantial” (1).     

Advance directives: legal remedies and psychosocial interventions

Although the legal basis to refuse life supports is firmly embedded in the laws of all 50 states, there is evidence that a gap exists between patients preferences and physicians actions. Patients and their families have increasingly begun to turn to the courts for redress, requesting damages when a physician has ignored their request to forgo life-sustaining treatment. This article explores the reasons why patients end-of-life medical choices are often ignored by the medical profession and the results of recent attempts to remedy these situations through the courts. Implications for practice are discussed, including practical suggestions for increasing the likelihood that a patient's wishes will be respected by medical providers.     

Advance directives in the primary care setting

Advance directives have been available for more than 20 years, yet only 2% of patients report having had a discussion about them with their physician. Physicians and patients appear to be reluctant to bring up the subject despite evidence that patients not only want help with advance directives, but report more satisfaction with their health care when the topic is addressed. The primary care setting is particularly well-suited to the establishment of advance directives. A clearer understanding of the benefits of advance directives to physicians and their patients can hopefully increase the use of this important health care resource.     

Advance directives: Survey of primary care patients

ObjectiveTo establish the prevalence of patients with advance directives in a family practice, and to describe patients’ perspectives on a family doctor’s role in initiating discussions about advance directives.DesignA self-administered patient questionnaire.SettingA busy urban family medicine teaching clinic in Hamilton, Ont.ParticipantsA convenience sample of adult patients attending the clinic over the course of a typical business week.ResultsThe survey population consisted of 800 participants (a response rate of 72.5%) well distributed across age groups; 19.7% had written advance directives and 43.8% had previously discussed the topic of advance directives, but only 4.3% of these discussions had occurred with family doctors. In 5.7% of cases, a family physician had raised the issue; 72.3% of respondents believed patients should initiate the discussion. Patients who considered advance directives extremely important were significantly more likely to want their family doctors to start the conversation (odds ratio 3.98; P < .05).ConclusionAdvance directives were not routinely addressed in the family practice. Most patients preferred to initiate the discussion of advance directives. However, patients who considered the subject extremely important wanted their family doctors to initiate the discussion.Advance directives are widely considered to be essential tools in protecting patient autonomy, particularly at the end of life. The term advance directive has multiple definitions in the literature, but a reasonable working definition is “a person’s oral and written instructions about his or her future medical care, in the event he or she becomes unable to communicate.”¹ In some jurisdictions, this is referred to as an advance care plan or a living will. Although they might be applicable in any clinical scenario, advance directives are typically invoked in situations of terminal illness and end-of-life care. In an age of sophisticated management of critical illness, and in the face of an aging population,² advance directives have substantial implications for effective patient care and for use of health care resources.Despite their increasing importance, advance directives remain an apparently underused tool. Various population estimates from the United States suggest that the proportion of adults who hold advance directives is between 5% and 25%, although this might increase with age and hospitalization.^3,4 A 1993 survey of 304 Canadian outpatients by Sam and Singer found that no participants held advance directives.⁵ In our own Canadian urban practice, an unpublished chart review of 142 randomly selected patients in 2009 established that 8 patients had documentation of their wishes at the end of life. Public awareness and tools for the development of advance directives were identified as priorities by the Quality End-of-Life Care Coalition of Canada in their 2010 Blueprint for Action.⁶The primary care office visit is a potentially useful setting for advance care discussions. Past studies have established that many patients would prefer to hold these discussions in the outpatient setting,⁷ and many would prefer that their primary care doctors initiate the discussion.^5,8,9 To date, many of the studies regarding advance directives in primary care have been small, retrospective in nature, or limited to elderly or palliative care populations.Our study aimed to establish the prevalence of advance directives in our patient population, and to elucidate our patients’ expectations regarding the role of their family doctors.     

Advance directives: Portuguese palliative care professionals' views

Advance directives are a controversial subject in Portugal at present, particularly among health professionals. Although some health professionals consider them to be important tools that are helpful in making proper decisions and promoting patient autonomy, others think that they may interfere with the human and relational dimension of care. It is therefore timely to investigate health professionals' views of advance directives in more detail. This study aimed to identify and reflect on Portuguese palliative care professionals' perspectives of advanced directives and their relevance to end-of-life decision making. A qualitative exploratory methodology was adopted in which interviews were conducted with two physicians, six nurses, two psychologists, and one social worker from four palliative care teams based across Portugal. The findings emphasize the relevance of advance directives to ethical decision-making processes in palliative care. However, debates are needed regarding whether advance directives should be legally binding.