People who are in their last year of life with multiple illnesses are finding it a struggle to access the support they need, including from their GP, shows a study* published today in BMJ Supportive & Palliative Care.
Patients reported lack of coordination between different services and treatments, and showed a lack of awareness of the value that palliative care might have for them.
Researchers in Edinburgh wanted to gain a patients perspective on the effect of multimorbidity, to help improve palliative and end-of-life care, so they spoke to patients from an acute admissions unit in a Scottish regional hospital, a large general practice in England and a respiratory diseases outpatient clinic in London.
They interviewed 37 people aged 55 to 92 years who were suffering from multiple diseases including heart, respiratory, liver and kidney failure, lung cancer, neurological conditions, and mild dementia, and anticipated to be in their last year of life and 17 of their carers. In all, they analysed 87 interviews that had taken place over a period of 5-9 months.
Interviewees said lack of coordination and continuity of care made it hard dealing with services that were designed more around the needs of people with a single condition, for example cancer.
They found it difficult to request GP appointments or visits because of the lack of a single diagnosis, and difficulty in explaining their health problems but found it physically demanding to get to a clinic.
They also struggled with multiple changing medications.
Family carers said they were physically, mentally and emotionally exhausted, with no idea of how long theyd have to continue their caring role, and felt undervalued by professionals.
Both patients and their carers tended to view the patients deteriorating health as an inevitable part of getting old, and the study authors were concerned by their apparent lack of awareness of the place of palliative care.
They said: Patients and carers were often unaware of the patients risk of dying. When a crisis or death did occur, it often felt unexpected, even if the GP had hinted that it could happen at any time. None of the participants showed any understanding of the potential benefits of planning ahead to optimise quality of life and death.
The researchers said that although some patients and carers deliberately limited their interactions with professional care providers to preserve their sense of independence, many others simply didnt fully understand their multiple conditions, medications and available services and found accessing support impersonal and challenging.
They concluded: Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.
Source Onmedica
