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

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

Declaração de consenso da seção de psiquiatria geriátrica da Associação Mundial de Psiquiatria sobre ética e capacidade em pessoas idosas com doença mental

BACKGROUND: The World Psychiatric Association (WPA) Section of Old Age Psychiatry, since 1997, has developed Consensus Statements relevant to the practice of Old Age Psychiatry. Since 2006 the Section has worked to develop a Consensus Statement on Ethics and Capacity in older people with mental disorders. METHOD: A Consensus Conference was realized in Prague, September 2008. The meeting was organized by the WPA Section of Old Age Psychiatry, with the participation of International Council of Nurses, Alzheimer Europe and Alzheimer Disease International. Participants who are recognised for their expertise in this area came from 11 countries and include psychiatrists, a neurologist, a nurse and family caregiving representatives. RESULTS: After two days of debate a draft was prepared and submitted to the organizations/associations represented at the meeting. When their respective comments were collected, a final text was prepared and published originally in English. This Portuguese version was prepared by two members of the meeting who came from Portuguese spoken countries. DISCUSSION: This Consensus Statement offers to mental health clinicians caring for older people with mental disorders, caregivers, other health professionals and the general public the setting out of and discourse in ethical principles which can often be complex and challenging, supported by practical guidance in meeting such ethical needs and standards, and to encouraged good clinical practice.CONTEXTO: A Seção de Psiquiatria Geriátrica da Associação Mundial de Psiquiatria (AMP), desde 1997, vem desenvolvendo Declarações de Consenso relevantespara a prática da Psiquiatria Geriátrica. Desde 2006, a Seção vem trabalhando para desenvolver uma Declaração de Consenso sobre Ética e Capacidade em pessoas idosas com transtornos mentais. MÉTODO: Uma Conferência de Consenso foi realizada em Praga em setembro de 2008. Organizada pela Seção de Psiquiatria da Pessoa Idosa da AMP, ela contou com a participação do International Council of Nurses, Alzheimer Europe e Alzheimer Disease International. Os participantes foram reconhecidos pela sua perícia nesse domínio e vieram de 11 países. Incluíam psiquiatras, uma neurologista, um enfermeiro e representantes de cuidadores familiares. RESULTADOS: Após dois dias de reuniões e debate, redigiu-se um rascunho da declaração que foi submetida para análise nas diversas organizações/associações que participaram da reunião. Após as sugestões finais recolhidas, um texto definitivo foi preparado em inglês e publicado. A presente versão em português é da responsabilidade de dois participantes lusófonos da reunião, que são também coautores da declaração de consenso final. CONCLUSÕES: Essa Declaração de Consenso oferece aos clínicos em saúde mental que cuidam de pessoas idosas com transtornos mentais, cuidadores, outros profissionais da saúde e o público em geral as definições e o debate sobre os princípios éticos que podem frequentemente ser complexos e desafiadores, apoiados em orientações práticas para satisfazer tais necessidades e padrões éticos e encorajar a boa prática clínica