Understanding how people with Parkinson's disease and their relatives approach advance care planning.

PURPOSE: Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson's disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning. METHODS: Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England. RESULTS: Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) 'Awareness'-which included the limited awareness on purpose of advance care planning and Parkinson's disease; (2) 'Uncertainty'-the uncertainty of living with PD and of life; and (3) 'Salience'-the complex decision-making processes that interviewees engaged in, which were highly variable. CONCLUSION: The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study.

BACKGROUND: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson's disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. METHODS: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. RESULTS: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. CONCLUSION: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Palliative care simulation for internal medicine trainees: development and pilot study.

OBJECTIVES: Shape of training has recognised that 'Managing End-of-Life and Applying Palliative Care Skills' is a key competency for internal medicine trainees. It provides the opportunity and challenge to improve palliative care training for generalist physicians. Simulation has been recognised internationally as a holistic teaching and assessment method. This study aimed to produce a palliative medicine simulation training package for internal medicine trainees for delivery by palliative medicine trainees providing the former opportunity to practice assessment and management of patients with life-limiting illness and the latter teaching and management opportunities. METHODS: A regional group of palliative medicine trainees were trained in simulation and debrief. Nominal and focus group techniques designed a simulation training package. Learning outcomes were mapped to the internal medicine curriculum descriptors. RESULTS: Palliative simulation for internal medicine trainees (PALL-SIM-IMT) is a training package meeting internal medicine trainees' curriculum requirements. Regional pilots have demonstrated feasibility for delivery by palliative medicine trainees and improvement in recipients' confidence in all curriculum descriptors. CONCLUSIONS: PALL-SIM-IMT can aid competency achievement for the provision of generalist palliative care by internal medicine trainees. It allows reciprocal development of palliative medicine trainees' leadership and teaching skills. National adoption and evaluation is ongoing.

Palliative care in people with idiopathic Parkinson's disease who die in hospital.

BACKGROUND: The UK National Institute for Health and Clinical Excellence guidelines state that palliative care options for people with Parkinson's disease (PD) should be discussed. AIMS: To investigate whether palliative care guidelines are adhered to for people with PD who die in hospital. SETTING/PARTICIPANTS: The medical notes of all people with a diagnosis of idiopathic PD who were living in two adjacent areas of northeast England and who died over a 3-year period were examined. Demographic data and specific information regarding events around the time of death were recorded. RESULTS: For the 236 patients identified, the average age at death was 82.8 years. Of these patients, 110 (46.6%) died in hospital, 56 (23.7%) at home, 59 (25.0%) in a care home and for 11 patients (4.7%) the place of death was not recorded. For those who died in hospital, only three patients, and seven relatives of patients, had had a recorded discussion with a clinician regarding their preferred place of death and only 15 (13.6%) were referred to a specialist palliative care team. Forty-six patients (41.8%) were placed on the Liverpool Care Pathway. CONCLUSIONS: For those dying in hospital, there are few previously documented end-of-life care discussions with patients or their relatives. The use of end-of-life pathways and access to specialist palliative care is variable. Following the Neuberger report, the Liverpool Care Pathway is to be replaced with individual end-of-life care plans. It is important to engage patients, and their relatives, in decision making regarding preferences at the end of life.

A questionnaire study of the approach to the anorexia-cachexia syndrome in patients with cancer by staff in a district general hospital.

GOALS OF WORK: This questionnaire study was designed to investigate understanding, assessment and management of cancer-related anorexia-cachexia syndrome (ACS) amongst hospital staff. METHODS: Qualified nurses and doctors on general medical and surgical wards within a district general hospital were asked to complete a questionnaire enquiring about understanding of the term cachexia, routine assessment of commonly associated symptoms and approaches to management of three commonly associated symptoms (poor appetite, early satiety and dry mouth). MAIN RESULTS: One hundred seventeen questionnaires were distributed with 100 returned (86% response rate). Cachexia was most frequently described as weight loss (79%) and anorexia (49%). Some symptoms (including altered appetite, constipation, nausea and vomiting) were routinely assessed during admission or review of these patients. Some common symptoms (including mouth problems, early satiety) were much less likely to be enquired about. Management of the three key symptoms demonstrated a range of approaches with little consistency. Early satiety was particularly poorly managed, with 29% of staff being unable to recognise or treat it. CONCLUSIONS: The study highlights the variable understanding of ACS and the lack of standardised assessment and management tools amongst staff in an acute hospital setting. This is likely to lead to inconsistent, and perhaps inadequate, care of patients with palliative care needs. Greater awareness and basic pathways of care may help to improve the experience of ACS for patients with cancer.