Dr Matt Maddocks, Lecturer and Specialist Physiotherapist at Cicely Saunders Institute, King’s College London, and Dr Charles Reilly, Consultant Physiotherapist at King’s College Hospital NHS Trust, announce a new research study just published.
In the words of L. Frank Baum in The Wonderful Wizard of Oz “There is no place like home”. “Home” is the place where you feel in control and properly oriented in space and time; it is a predictable and secure place, the primary connection between you and the rest of the world, and for many with advanced disease it is their preferred place to die.
In a new study, 1 published in BMC Medicine, researchers from the Cicely Saunders Institute, King’s College London, studied a large national data set of all deaths from two groups of people with common respiratory diseases – Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Pulmonary Diseases (IPD) – over 14 years.
In particular, the team looked at the impact of a national End of Life Care Strategy, one aim of which was to reduce deaths in hospital. Overall hospital deaths among those with COPD and IPD fell by 3-6% in the eight years following the introduction of the strategy. This reversed previous trends of increasing hospital deaths.
Unfortunately, people living with more than one disease or disorder, termed “multimorbidity”, continued to die in hospital. The strategy did not appear to reach this important and growing group. People with three or more different diseases as well as their COPD or IPD, were over one-third more likely to die in hospital than those who did not. Those living with deprivation also had higher chances of dying in hospital across the period studied.
Lead author, Professor Irene Higginson, said:
“Understanding which factors affect place of death is vital for planning service and improving care, especially given our ageing population, rising chronic diseases worldwide and the high costs of hospital admissions. Our results show that while the End of Life Care Strategy may have helped to move some deaths out of hospital for people with respiratory disease, it still misses important groups.”
“It was particularly concerning that there was no fall in hospital deaths for people living with multimorbidity and that the disparity widened over time. In the UK, the number of people with three or more long-term conditions is predicted to rise from 1.9 million in 2008 to 2.9 million in 2018, requiring a major increase in healthcare expenditure.”
Geographical differences were also observed. London had the highest proportion of hospital deaths, and the South-West and South East Coast regions had lower proportions of hospital deaths than most other regions. Living in urban rather than rural areas increased the chances of hospital death. Surprisingly, among people with COPD, being single, widowed or divorced was associated with reduced chances of dying in hospital. Researchers suggest that this may show that when family members are present, they do not know what to do when breathlessness escalates which increases the chance of patients being admitted to hospital.
Insights from interview studies informed the team that families and carers want more information about how to support their loved ones at home, in particular when they have symptoms like shortness of breath that can escalate unexpectedly. If they do not feel able to help out at times of crisis, many call for an ambulance or travel to the emergency department.
Ensuring that both patients and carers get early access to specialist palliative care services and therapies (physiotherapy and occupational therapy) is paramount, especially for patients with multimorbidities. This research suggests that home-based therapeutic interventions need to be focused on equipment provision, symptom management and carer support, to enable people to die at home if they wish.
- Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors, Irene J. Higginson, Charles C. Reilly, Sabrina Bajwah, Matthew Maddocks, Massimo Costantini, Wei Gao and on behalf of the GUIDE Care project, BMC Medicine 2017 15:19, DOI: 10.1186/s12916-016-0776-2.