Improving Person-centred Care for Hospice Patients who have Difficulty Expressing their Needs Project Leader: Jane Chatterjee, Lecturer in Palliative Care Contact details: St Gemmas Hospice 329 Harrogate Road Leeds LS17 6QD Email: firstname.lastname@example.org Duration of project: November 2013-June 2015 Submitted for publication: April 2016 Key Words: Person-centred care, cognitive impairment, pain and distress, assessment and helping us to know you tools Summary of project A significant number of palliative care patients have difficulty communicating their needs, which may be a result of dysphasia, cognitive impairment or extreme frailty. The aim of this project was to support hospice staff to provide person-centred care and improve symptom management for these patients. The project team comprised a multidisciplinary group of hospice staff, an already established group interested in meeting the needs of people experiencing cognitive impairment. The project was developed in two phases. Phase one aimed to support nursing staff to develop a general level of skills to understand patients with difficulty expressing their needs and to avoid or relieve unwarranted distress. Phase two looked to provide multidisciplinary staff with specific skills in supportive and augmentative communication techniques and the use of a behavioural assessment tool. This report discusses phase one of the project. The main outcomes achieved within phase one of the project were:
A booklet was designed to ask the patient and their family and/or carers to provide information about the patient. This aimed to help hospice staff care for them in a way that promotes autonomy and dignity and alleviates distress.
Resources were made available to support communication and help nursing staff provide appropriate occupation, relaxation and reminiscence activities which would give patients meaning and validation.
Staff had greater understanding of the experiences of patients with cognitive impairment after a study day workshop for hospice staff on The experience of cognitive impairment.
There was more participation, active learning and action planning as a result of a claims, concerns and issue exercise used with key stakeholders.
After eighteen months the project remains in the process of development and will continue beyond the scope of this report with elements of phase two being introduced.
Background St. Gemmas Hospice provides an integrated palliative care service comprising an in-patient unit with 32 beds, a day unit and community team. Patients with a life limiting illness are referred to the service for the purpose of symptom management, psychological support and/or end-of-life care. In line with the original vision put forward by Dame Cicely Saunders, founder of the modern hospice movement, St. Gemmas Hospice looks to integrate research and education with clinical practice. This is done through a dedicated Academic Unit of Palliative Care which has affiliations with the local university. It supports research, education and training internationally, nationally and locally and aims to offer a structured and supportive learning environment for its staff. Studies show that approximately 34-45% of patients experience some degree of cognitive impairment at the time of admission to palliative care units, which increases to 83% before death (Radbruch et al., 2000). Disorders that affect cognition include neurodegenerative, vascular, traumatic, toxic, anoxic and infectious processes resulting in neurocognitive deficits such as dementia and delirium (Buffum et al., 2007). Symptom management is a founding component of palliative care and relies on accurate assessment, which in turn relies on the ability of patients to communicate how they feel. Cognitive impairment can affect a persons ability to report, describe and interpret their symptoms as well as understand the assessment questions and recall previous experiences of their symptoms (Wilson et al., 2006). People experience different degrees of cognitive impairment. Some people with a milder form may be able to verbally report their symptoms but have difficulty giving comprehensive and detailed descriptions of how they feel. They may benefit from supportive and augmentative communication techniques. Exploring these practical approaches is advocated by the Mental Capacity Act (Department of Health, 2005). When a person experiences severe cognitive impairment, a persons verbal communication skills diminish and a greater reliance is placed on observations of their behaviour. The majority of research in this field has looked at pain assessment in people with severe dementia and the development of behavioural pain assessment tools. Regnard et al. (2007) point out that as there is no current evidence of a specific sign or behaviour which distinguishes pain from other causes of distress in people with severe communication difficulties, these tools are in fact detecting the presence of distress. Once distress is detected, it is a matter determining the cause, which may be physical, psychosocial or emotional. Studies suggest that effective symptom assessment depends on an intimate knowledge of the individual with cognitive impairment (Cohen-Mansfield and Creedon, 2002; Falls et al., 2004). Understanding their normal state, including their routines, habits and needs, allows changes in behaviour to be identified and understood in context. This makes it easier to differentiate, for example, between pain, hunger, fatigue, and anxiety. Assessment should therefore include insights from carers familiar with the patient (Royal College of Physicians et al., 2007; Hadjistavropoulos et al., 2010). Studies have shown that a lack of knowledge or confidence in responding to people who are distressed and suffering from a cognitive impairment is also a source of stress for professional carers (Beck, et al., 1999; Davison et al., 2007). This is supported by a previous study carried out by the project lead where hospice staff highlighted their concerns around communicating, assessing symptoms and understanding distress in patients with cognitive impairment (Chatterjee, 2012). Buffum et al. (2007) and Hadjistavropoulos et al. (2008) suggest it is reasonable that assessment methods and tools advocated for people with dementia be used for people with other causes of cognitive impairment. Working on this basis, the project lead, through a literature review, identified methods and tools that would support staff (Chatterjee, 2012). These include:
Supportive and augmentative communication techniques - using words, pictures and gestures to enhance communication
The This is Me leaflet (Alzheimers Society, 2009) - working with the patient, family, carers to understand the likes, dislikes, habits, routines, life story and behavioural characteristics of the patient
Disability Distress Assessment Tool (DisDAT) (Regnard et al., 2007) - a behavioural assessment tool that identifies distress
Resources to stimulate activity, relaxation and reminiscence It was felt that patients with dysphasia or extreme frailty and fatigue would also benefit from these methods as they too are likely to have difficulty with concentration and communication. The use of such methods and tools can promote autonomy, dignity and validate a persons life. It was this understanding that extended the scope of the project so that it encompassed providing a person-centered approach to symptom assessment and care delivery for a significant number of hospice patients who have or may in the future develop difficulty expressing their needs. The aim of this project was to implement and embed the use of these methods and tools in practice using a practice development approach. Practice development methodology offers systematic processes to bring about the cultural changes that are required to firmly embed person-centred and evidenced-based care in practice. It acknowledges the importance of the human factors' such as staff wellbeing, support and learning, delivered through effective leadership and facilitation. It uses an active learning approach where creative thinking develops new understanding and learning that is transferred to the workplace. It integrates inclusive, participative and collaborative evaluation to establish and develop practice through a continuous process (McCormack et al., 2013a; 2013b; Dewing, 2009). The project was in two phases. The first phase looked to improve the general skills of hospice staff in understanding and caring for patients who have difficulty communicating their needs. This was facilitated by developing an adapted form of the This is Me leaflet (Alzheimers Society, 2009) and engaging with all staff involved in patient care on understanding and supporting people with cognitive impairment. In addition, various resources were made available to support nursing staff in providing patients with activity and occupation, comfort, reminiscence and relaxation. In the second phase it is planned that a dedicated group of staff will increase their knowledge on using augmentative communication techniques and the DisDAT tool. It is anticipated that patients who experience persistent pain, discomfort and/or unresolved distress will be referred to this group to further enhance the assessment of their pain and distress and inform care plans. This report will focus on phase one of the project as it is important initially to ensure that all staff have the skills to care for patients in ways that minimise general causes of distress. Then patients experiencing more complex symptoms will be identified and can then be assessed in a more structured way using the approaches outlined in phase two above. To support the project an application was made to the