Facilitating Patient Voice: A Case Study on Advance Directives and the Primary Health Nurse

<p>Advance directives are just one aspect of advance care planning. According to the New Zealand Nurses Organisation, advance directives are becoming increasingly common in New Zealand. Nurses are well positioned to take on an increasing role in advance directives, particularly in view of the expected burgeoning older population to which New Zealand is no exception. The literature suggests there is a role for primary health nurses in advance directives but no literature to date is available on this role in the New Zealand context. The aim of this research was to determine primary health nurses' role in advance directives. A qualitative case study research approach was used to explore the knowledge, attitudes, experiences, and involvement of primary health nurses in advance directives. Semi-structured interviews were conducted with 13 senior primary health nurses from one New Zealand province. Two propositions informed the analysis: 1) primary health nurses currently do not have a role in advance directives; and 2) primary health nurses believe that advance directives can promote effective-end-of-life care. Watson's Theory of Human Caring was used as the theoretical framework to guide the study. Three themes were identified from the analysis: encountering challenges, facilitating patient voice, and valuing the person. The findings revealed that primary health nurses had little or no significant experience or involvement in advance directives. Participants described knowledge inconsistencies about advance directives, in particular to related legalities. Nevertheless, participants had positive attitudes towards advance directives and believed there was a role for primary health nurses in early advance directive conversations. They emphasised the importance of teamwork and envisaged their role as one of support to both the patient and doctor. Caring praxis underpinned the nurses' positive attitudes towards advance directives. These caring behaviours sustained the core values of patient autonomy and patient advocacy considered fundamental to sensitive advance directive conversations. Many challenges were identified in terms of the nurse's role in advanced directives. These included cultural considerations for Māori in order to respect The Treaty of Waitangi principles and attending to the cultural needs of the individual Pacific Island groupings. Other challenges included unclear guidelines, unclear role delineation, ethical dilemmas and fragmented or complex communication issues across the primary/secondary health sector. Results of this study may inform nurses of the need to establish nurse–patient relationships built upon trust and positive regard in order to support patients in advanced directive discussions. Implications for nurse educators include incorporating education directed at empowering nurses to participate in ethical decision making to enhance patients' end-of-life care. Given the importance of the multi-disciplinary responsibility in establishing advance directives, there is a need for further research regarding how health professionals could function together in the role of advance directive communication to best meet patients' needs.</p>

Facilitating Patient Voice: A Case Study on Advance Directives and the Primary Health Nurse

<p>Advance directives are just one aspect of advance care planning. According to the New Zealand Nurses Organisation, advance directives are becoming increasingly common in New Zealand. Nurses are well positioned to take on an increasing role in advance directives, particularly in view of the expected burgeoning older population to which New Zealand is no exception. The literature suggests there is a role for primary health nurses in advance directives but no literature to date is available on this role in the New Zealand context. The aim of this research was to determine primary health nurses' role in advance directives. A qualitative case study research approach was used to explore the knowledge, attitudes, experiences, and involvement of primary health nurses in advance directives. Semi-structured interviews were conducted with 13 senior primary health nurses from one New Zealand province. Two propositions informed the analysis: 1) primary health nurses currently do not have a role in advance directives; and 2) primary health nurses believe that advance directives can promote effective-end-of-life care. Watson's Theory of Human Caring was used as the theoretical framework to guide the study. Three themes were identified from the analysis: encountering challenges, facilitating patient voice, and valuing the person. The findings revealed that primary health nurses had little or no significant experience or involvement in advance directives. Participants described knowledge inconsistencies about advance directives, in particular to related legalities. Nevertheless, participants had positive attitudes towards advance directives and believed there was a role for primary health nurses in early advance directive conversations. They emphasised the importance of teamwork and envisaged their role as one of support to both the patient and doctor. Caring praxis underpinned the nurses' positive attitudes towards advance directives. These caring behaviours sustained the core values of patient autonomy and patient advocacy considered fundamental to sensitive advance directive conversations. Many challenges were identified in terms of the nurse's role in advanced directives. These included cultural considerations for Māori in order to respect The Treaty of Waitangi principles and attending to the cultural needs of the individual Pacific Island groupings. Other challenges included unclear guidelines, unclear role delineation, ethical dilemmas and fragmented or complex communication issues across the primary/secondary health sector. Results of this study may inform nurses of the need to establish nurse–patient relationships built upon trust and positive regard in order to support patients in advanced directive discussions. Implications for nurse educators include incorporating education directed at empowering nurses to participate in ethical decision making to enhance patients' end-of-life care. Given the importance of the multi-disciplinary responsibility in establishing advance directives, there is a need for further research regarding how health professionals could function together in the role of advance directive communication to best meet patients' needs.</p>

Delirium Assessment and Management in Geriatric Psychiatry under Prevailing Indian Laws (MHCA 2017)

The Indian Mental Health Care Act of 2017 (the Act) focuses on the human rights of persons with mental illness. It is based on the individual’s dignity, autonomy, and independence with a client-centered approach. Delirium is frequently seen in the hospitalized geriatric population, more commonly in medical and surgical wards, and much less frequently in psychiatry wards. Delirium is covered under the Act as a “substantial disturbance of thinking, mood, perception, orientation or memory that grossly impairs judgment, behavior, (and) capacity to recognize reality or ability to meet the ordinary demands of life.” The Act provides provisions for capacity assessment, emergency treatment, supported admission, advance directive, and the role of nominated representative in such cases.

533 - “Agitation and End-of-Life: Towards an Advance Directive that Prepare for Agitation and Behavioral Symptoms in Alzheimer’s Disease”

Advance Directives provide legal documentation of a person’s wishes regarding medical treatment and care, allowing people and their families to decide in advance how care and treatment should be provided at end-of-life when a person is no longer capable of making independent decisions. For people living with advanced stages of Alzheimer’s, Advance Directives give specific, life-altering instructions to ensure a person’s will is being met. Yet Advance Directives that anticipate for the eventualities of Alzheimer’s Disease often fail to specifically prepare for the care and treatment decisions prompted by agitation and other behavioral aspects of the disease. This is a major oversight.“Agitation and End-of-Life: Towards an Advance Directive that Prepare for Agitation and Behavioral Symptoms in Alzheimer’s Disease” proposes a framework for how Advance Directives can prepare for the unique decisions that arise as a person experiences agitation and other behavioral symptoms of Alzheimer’s.The framework proposed in this project draws from the recent development of Psychiatric Advance Directives led in part by the American Psychiatric Association, which have pioneered the use of Advance Directives for anticipated behavioral challenges. Specifically, Psychiatric Advance Directives allow individuals to specify in advance which treatments may be administered in response to acute episodes of psychiatric illness at a time when someone is unable or unwilling to provide consent. Our project contends that the mechanisms underlying Psychiatric Advance Directives be modeled but modified to help people, families, and providers prepare for agitation and the behavioral aspects of Alzheimer’s.Specifically, we propose a four-part framework for Advance Directives to prepare for agitation and other behavioral aspects of Alzheimer’s: 1.Psychiatric medications. What treatments may – or may not – be used to manage agitation or other behavioral disturbances?2.Agitation prevention and de-escalation. What strategies and techniques can caregivers employ to mollify agitated behaviors? How should caregivers respond to episodes of agitation?3.Lifestyle preferences and values. What values – religious or otherwise – should guide care and treatment?4.Information sharing and access. When and how should caregivers, medical professionals, and family members be notified – or share information about – behavioral disturbances?It is well established in the scientific and medical literature that agitation and behavioral aspects of Alzheimer’s can cause severe difficulty for families as the disease progresses. Advance Directives that prepare for agitation can help to create a plan and ease the challenges prompted by agitation and other behavioral aspects of Alzheimer’s.

End-of-Life Decision-Making in Intensive Care Ten Years after a Law on Advance Directives in Germany

Background and Objectives: Mortality on Intensive Care Units (ICUs) is high and death frequently occurs after decisions to limit life-sustaining therapies. An advance directive is a tool meant to preserve patient autonomy by guiding anticipated future treatment decisions once decision-making capacity is lost. Since September 2009, advance directives are legally binding for the caregiver team and the patients’ surrogate decision-maker in Germany. The change in frequencies of end-of-life decisions (EOLDs) and completed advance directives among deceased ICU patients ten years after the enactment of a law on advance directives in Germany is unknown. Materials and Methods: Retrospective analysis on all deceased patients of surgical ICUs of a German university medical center from 08/2008 to 09/2009 and from 01/2019 to 09/2019. Frequency of EOLDs and advance directives and the process of EOLDs were compared between patients admitted before and after the change in legislation. (No. of ethical approval EA2/308/20) Results: Significantly more EOLDs occurred in the 2019 cohort compared to the 2009 cohort (85.8% vs. 70.7% of deceased patients, p = 0.006). The number of patients possessing an advance directive to express a living or therapeutic will was higher in the 2019 cohort compared to the 2009 cohort (26.4% vs. 8.9%; difference: 17.5%, p < 0.001). Participation of the patients’ family in the EOLD process (74.7% vs. 60.9%; difference: 13.8%, p = 0.048) and the frequency of documentation of EOLD-relevant information (50.0% vs. 18.7%; difference: 31.3%, p < 0.001) increased from 2009 to 2019. Discussion: During a ten-year period from 2009 to 2019, the frequency of EOLDs and the completion rate of advance directives have increased considerably. In addition, EOLD-associated communication and documentation have further improved.

Advance Directives in Patients With Head and Neck Cancer - Status Quo and Factors Influencing Their Creation

Background: Advance Care Planning (ACP) including living wills (LWs) and durable powers of attorney for healthcare (DPAHCs) is a highly relevant topic aiming to increase patient autonomy and reduce medical overtreatment. Data from patients with head and neck cancer are not currently available. Methods: In this single center cross-sectional study, we evaluated patients during their regular follow-up consultations at Germany’s largest tertiary referral center for head and neck cancer, regarding the frequency, characteristics, and influencing factors for the creation of advance directives (ADs) using a validated questionnaire tailored to our cohort. The advance directives included living wills, durable powers of attorney for healthcare, and combined documents (CDs). Results: Four hundred and forty-six patients were surveyed from 07/01/2019 to 12/31/2019 (response rate=65.9%). The mean age was 62.4 years (SD 11.9), 26.9% were women (n=120). 46.4% of patients (n=207) reported having authored at least one advance directive. These documents included 16 durable powers of attorney for healthcare (3.6%), 75 living wills (16.8%), and 116 combined documents (26.0%). In multinominal regression analysis, older age (OR≤0.231, 95% CI 0.097-0.548; p<0.001), regular medication (OR=1.862, 95% CI 1.048-3.308; p=0.034), and the marital status (“married”: OR=2.395, 95% CI 1.074-5.337; p=0.033; and “permanent partnership”: OR=4.526, 95% CI 1.100-18.625; p=0.036) emerged as significant factors increasing the likelihood of having an advance directive. In contrast, the stage of disease, the therapeutic regimen, the ECOG status, and the time from initial diagnosis did not correlate with the presence of any type of advance directive. Conclusion: Less than half of head and neck cancer patients had created an advance directive. Older and comorbid patients who were married or in a permanent partnership had a higher likelihood of having an advance directive. This is the first study investigating the current situation in head and neck oncology and providing evidence to identify a patient population in need of appropriate support.