Navigating the minefield: Managing refusal of medical care in older adults with chronic symptoms of mental illness

Purpose: The purpose of this case series is to illustrate the complexity of considerations across health (physical and mental), ethical, human rights and practical domains when an older adult with chronic symptoms of mental illness refuses treatment for a serious medical comorbidity. A broad understanding of these considerations may assist health care professionals in navigating this challenging but common aspect of clinical practice. Case Presentation: Three detailed case reports are described. Participants were older adults with an acute presentation of a chronic mental illness, admitted to a specialized older persons mental health inpatient unit (OPMHU) in an Australian metropolitan hospital. Significant comorbid medical issues were detected or arose during the admission and the patient refused the recommended medical intervention. Data extracted from patients’ medical records were analyzed and synthesized into detailed case reports using descriptive techniques. Each patient was assessed as lacking capacity for healthcare and treatment consent and did not have relatives or friends to assist with supported decision-making. Multifaceted aspects of decision-making and management are highlighted. Conclusion: There are multiple complex issues to consider when an older adult with chronic symptoms of mental illness refuses treatment for serious comorbid medical conditions. In addition to optimizing management of the underlying mental illness (which may be impairing capacity to make healthcare decisions), clinicians should adopt a role of advocacy for their patients in considering the potential impact of ageism and stigma on management plans and inequities in physical healthcare. Consultation with specialist medical teams should incorporate multifaceted considerations such as potentially inappropriate treatment and optimum setting of care. Equally important is reflective practice; considering whether treatment decisions may infringe upon human rights or cause trauma

A collaborative approach to supporting communication in the assessment of decision making capacity

Legislation is beginning to reflect the need to formally assess people whom are suspected of reduced mental capacity. However, these legislative changes have preceded research into effective and efficient assessment protocols. In order to demonstrate decision making capacity, an individual needs to communicate their understanding and wishes. However, decision making capacity can be masked when communication is impaired, for example, through impaired receptive and expressive language or unintelligible speech. For this reason, people with aphasia and related neurogenic communication disorders can be significantly compromised in their ability to participate n decision making, yet have a human right to the support required to facilitate such decision-making and to exercise their legal capacity (United Nations, 2006). Speech-language pathologists are integral to maximising a person’s communication ability; however, commonly used speech pathology strategies are not well known by other disciplines (Ferguson et al, 2010). We present up-to-date guidelines and practical strategies to facilitate communication in people with aphasias and other language deficits. A collaborative, multi-disciplinary approach is achievable and consistent with an inclusive human rights approach to decision making

Capacity to consent to research: The evolution and current concepts

The ethical problem of the need to conduct research on the very conditions that impair the ability to consent to such research is widely acknowledged. People with cognitive impairment and mental illness have an equitable right to research being conducted in areas relevant to their treatment and care, and should be given an equitable opportunity to participate in such research, even if they lack capacity. They also have a right to adequate safeguards to protect their interests and respect their wishes in regards to research participation. Provisions for involvement in research of those who are unable to give consent have only developed over the last 50 years. Over this period we have witnessed a proliferation of policies, regulations and laws that govern research involving subjects unable to give consent. There has been a parallel increase in our understanding of the concepts of consent and capacity, specifically as it relates to the research context, with development of standards for research consent and instruments to guide capacity evaluation. We review the evolution of research governance and the underlying ethical principles that underpin such regulations, approaches to capacity evaluation and the use of proxies and advance research directives to facilitate research participation in adults who lack capacity.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/94739/1/appy210.pd

The Human Rights of Older People With Mental Health Conditions and Psychosocial Disability to a Good Death and Dying Well

The human right to a good death and dying well is as important as the right to life. At stake at the end of life are human rights to dignity, autonomy, self-determination and respect for will and preferences, equitable access to quality health care that is needs-based, and respect for family and relationships. Older people with dementia, those with serious mental illness, and those with intellectual disability are vulnerable to "bad deaths" due to violations of these rights. In this paper we explore why this is so and examine existing and potential solutions. A human rights-approach to end-of-life care and policy for older persons with mental health conditions and psychosocial disability is one that is needs-based, encompassing physical and mental health, palliative care, social, and spiritual support services provided in the context of inclusive living. Most importantly, end of life care must be self-determined, and not "one size fits all." An important remedy to existing violations is to strengthen human rights frameworks to cater specifically to older persons' needs with a UN convention on the rights of older persons. Finally, as health professionals we have important contributions to make at the coalface by accepting our responsibilities in the area of death and dying. With the concept of the palliative psychiatrist gaining traction and recognition that death is our business, we add that human rights is also our business

Human Rights to Inclusive Living and Care for Older People With Mental Health Conditions

Although older persons wish to age at home, many older persons with mental health conditions and psychosocial disability (MHC-PSD) spend the last few years of their life in residential facilities. This paper will examine the impact of ageism and human rights violations manifested in environmental design, specifically regarding social isolation, loneliness, inadequate psychosocial, environmental, recreational and spiritual support. This is compounded by failure to meet basic care needs-nutrition, hydration, pain and medication support. This paper highlights two innovative initiatives from the Netherlands, which show that older persons' rights can be maintained in innovative, collective living arrangements. It is concluded that the creation of inclusive and safe environments for older persons with MHC-PSD can facilitate the enjoyment of Human Rights

Navigating Community-Based Aged Care Services From the Consumer Perspective: A Scoping Review

Background and Objectives: The shift to consumer-directed aged care means that older adults need to play a more active role in navigating the complex aged care system for adequate health and social services. Challenges in the navigation process result in unmet needs and difficulty accessing available resources. This scoping review investigates how aged care navigation is conceptualized in literature and interrogates research on the experiences of older adults navigating community-based aged care services with or without support from their informal carers. Research Design and Methods: This review follows the Joanna Briggs Institute methodological guidelines. PubMed, Scopus, and ProQuest were searched for relevant literature published from 2008 to 2021, supplemented by grey literature and manual reference list searching. Data were extracted using a predefined data-extraction table and synthesized with an inductive thematic analysis. Results: The current conceptualization of aged care navigation focuses on the support provided to older adults, rather than actions taken by older adults themselves. Thematic analysis from the included studies (n = 26) revealed shared themes (lack of knowledge, social networks as information providers, complex care systems) among older adults and informal carers; unique challenges faced by older adults (difficulties with technology, waiting game), and informal carers (structural burden) in aged care navigation. Discussion and Implications: Findings suggest the need to comprehensively assess individual circumstances including social networks and access to informal carers as predictors of successful navigation. Changes that reduce the complexity of the aged care system and improve coordination will relieve the structural burden experienced by consumers

Silent and suffering : a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities

Background: Pain is common in older people, particularly those in residential aged care facilities (RACF) and those with dementia. However, despite 20 years of discourse on pain and dementia, pain is still undetected or misinterpreted in people with dementia in residential aged care facilities, particularly those with communication difficulties. Methods: A topical survey typology with semistructured interviews was used to gather attitudes and experiences of staff from 15 RACF across Northern Sydney Local Health District. Results: While pain is proactively assessed and pain charts are used in RACF, this is more often regulatory-driven than patient-driven (eg, prior to accreditation). Identification of pain and need for pain relief was ill defined and poorly understood. Both pharmacological and non-¬pharmacological regimes were used, but in an ad hoc, variable and unsystematic manner, with patient, staff, and attitudinal obstacles between the experience of pain and its relief. Conclusion: A laborious “pain communication chain” exists between the experience of pain and its relief for people with severe dementia within RACF. Given the salience of pain for older people with dementia, we recommend early, proactive consideration and management of pain in the approach to behaviors of concern. Individualized pain measures for such residents; empowerment of nursing staff as “needs interpreters”; collaborative partnerships with common care goals between patients where possible; RACF staff, doctors, and family carers; and more meaningful use of pain charts to map response to stepped pain protocols may be useful strate¬gies to explore in clinical settings

Ageism and the State of Older People With Mental Conditions During the Pandemic and Beyond: Manifestations, Etiology, Consequences, and Future Directions

The pandemic has put the spotlight on older people and on the topic of ageism. In early 2021, a call was made for input into the Thematic Report on Ageism and Discrimination to inform the United Nations Independent Expert on the Rights of Older Persons' forthcoming report to the 48th session of the Human Rights Council. The aim of this paper is to articulate the International Psychogeriatric Association (IPA) and the World Psychiatric Association Section of Old Age Psychiatry (WPA-SOAP) response to this call. This brief statement on ageism with a special focus on older people with mental health conditions is divided into three sections. We start by outlining the various manifestations of ageism in varied contexts and countries with a primary focus on the pandemic. Possible consequences of ageism with a focus on older people's mental health and well-being are outlined. We conclude by discussing ways to overcome ageism and reduce its occurrence, especially during times of extreme conditions