Jane Maher

Having the difficult conversations about the end of life.

Clinicians need to create repeated opportunities for patients to talk about their future and end of life care, guided by the patient as to timing, pace, and content of such talks, and respecting the wishes of those who do not want to discuss such matters

Collecting quality of life data in EORTC clinical trials--what happens in practice?

Problems with poor compliance when collecting quality of life data (QoL) in randomised clinical trials have prompted investigators to suggest measures to improve data collection. This study sought to look at the practical problems encountered by data managers and nurses in the cross‐cultural setting of EORTC trials. A literature search was followed by a poster workshop session at a meeting of the EORTC Study Group on Data Management and finally a postal questionnaire. The key problems identified centred around the lack of interest from some clinicians, lack of resources, inadequate protocols and a desire for training in the rationale for collecting QoL data to aid discussions with patients. Despite these problems many data managers and nurses found it rewarding to be on the ‘frontline’. Since this study, the EORTC Data Center and in particular the Quality of Life Study Group and the Quality of Life Unit have implemented a number of measures to improve compliance. These include written guidelines for EORTC trials and a training course planned for Autumn 1999. Copyright

Who pays for palliative care: an opportunity to get it right

In July 2010, the Secretary of State for Health convened an independent review of the funding of “dedicated palliative care” for adults and children in England. The aim was to develop, for the first time, a per patient mechanism to fund palliative care to meet the needs of the approximately 457 000 people who require palliative care every year, and in particular, the 92 000 who are currently not being reached.1 The review team aimed to create a fair and transparent funding system delivering better outcomes for patients and providing better value for the National Health Service (NHS). This required the development of a palliative care tariff based on assessed need, a funding system which incentivises good outcomes for patients irrespective of time and setting, and the commissioning of integrated care packages which stimulate community based services to enable more people to be cared for outside the acute sector. The team suggest important levers for change (table 1). View this table: Table 1 Proposed levers Before the tariff could be discussed, the knotty question of defining “dedicated palliative care services” had to be addressed. In the report they have been defined as “services which ensure that people achieve an acceptable quality of life enabling them to die in the place of their choice”, with a division of services into three categories: specialist care services (care delivered by specialist providers such as specialist in-patient services), core services (services whose primary focus is palliative care, eg, community nursing teams) and universal palliative care services delivered by non-specialists (eg, general practitioners and social workers). One of the aims of pilot testing may be to refine these categories. For example, there are a number of successful multidisciplinary specialist services without dedicated in-patient beds. Very wide consultation (760 individuals and 380 organisations) was carried out to define what …

Consequences of cancer treatment: a new challenge for supportive and palliative care.

Prevention and treatment of cancer are improving. There are now 2 million people living in the UK after a cancer diagnosis. This will rise to 4 million by 2030. More survivors are now living long enough to develop treatment related conditions.1 The current estimate is that at least one in five of those who survive cancer can expect ongoing physical and psychological problems. These can include persistent fatigue, breathlessness, neuropathy, cognitive impairment, poor bowel and urine control, skin necrosis, bone fracture and endocrine failure as well as an increased risk of common chronic illnesses such as heart failure, osteoporosis and second primary cancer. Symptoms may persist after initial therapy or they may develop months or years later, after a period of normal health, when neither the patient nor their health professional links them to previous cancer. For a significant minority, the ongoing impact of cancer treatment can be devastating.2 Most consequences of cancer treatment do not have to be disabling and after appropriate specialist assessment and diagnosis can be managed effectively, often by patients themselves. However, a minority will have more complex problems requiring specialist multidisciplinary management. Recent estimates suggest that this will involve 5%–10% of patients with the common cancer types over a 20-year period. The US National Health Interview Study compared 5000 cancer survivors with over 90 000 people without a history of cancer and found that cancer survivors were more likely to report poor health than those without a cancer diagnosis.3 Similar findings have now been reported in UK studies,4 where data linkage studies suggest that a significant proportion of morbidity is associated with specific cancer treatments. Most modern surgery, radiotherapy chemotherapy and biological treatments can have consequences which either develop immediately or became apparent years or even decades later. Adults treated as …

Acute Monocular Visual Loss Due To Carcinomatous Meningitis

We describe two cases of painless visual loss, initially thought to be giant cell arteritis or carcinoma-associated retinopathy in whom subsequent investigation revealed carcinomatous meningitis. These cases emphasise the difficulties that may occur in the diagnosis of carcinomatous meningitis and that isolated visual loss may be a presenting feature.