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Older people living with frailty value their autonomy and their functioning when they receive acute care in hospital. Research found that they want to feel in control of their healthcare, and to feel safe when they go home.
Hospitals typically use waiting times and survival rates to judge the quality of care they provide. This study carried out interviews with older people living with frailty who had been in an emergency department. It found that these typical quality metrics did not fully capture the health outcomes that were most important to this group.
People with frailty are vulnerable to poor outcomes when a health crisis occurs. Knowing what matters most to them will help improve the quality of care they receive when attending an emergency department.
A series of interviews in Leicester found that patients’ main goals were to maintain autonomy and functioning. Autonomy involved being well-informed and in control, and feeling sufficiently secure at home. Functioning meant being able to manage daily care routines, not to be a burden on others, and relief from being unwell. Some patients wanted full independence in decision-making; others wanted family members to help make decisions. Some wanted to know more clinical details than others.
Increased awareness of the impact of frailty on people’s wishes could help healthcare professionals support them in a meaningful way. The researchers call for shared decision making to tailor care to each person. This work is part of a larger project looking at how to best measure person-centred acute healthcare for those with frailty.
Further information on frailty can be found on the NHS website.
Article shared from the NIHR Evidence website, first published on 12th December 2022
The issue: do people with frailty receive care they value?
Around 1 in 10 people who attend emergency departments have frailty. Yet little is known about what matters to this group when they are receiving acute care in hospital. Frailty becomes more common with ageing; people with frailty have accumulated physical, social or mental problems which make them vulnerable to poorer outcomes from a health crisis.
The NHS currently measures quality of care in emergency departments by looking at waiting times, survival rates, and so on. But these measures may not appropriately assess whether people with frailty are receiving good care. Better understanding of what matters to this group could help researchers develop more meaningful ways to measure the quality of care they receive.
In this study, researchers carried out in-depth interviews with people with frailty after they had attended an emergency department. They asked about their worries at the time they went to hospital, and what they had wanted from their visit.
What’s new?
Researchers recruited 22 people with frailty who had been to an emergency department in Leicester. Their average age was 85 years, and 1 in 4 was living with dementia. A group of public contributors (volunteers), who were either caring for someone with frailty, or were themselves living with frailty, worked with the researchers at every stage. They helped ensure that the study was relevant to patients, and included a diverse group (including patients with communication difficulties due to cognitive impairment, or those needing translators).
The researchers found that most patients had gone to the emergency department already knowing the outcomes they wanted. Their concerns were mostly about maintaining their autonomy and function.
Autonomy
- Information. People wanted to understand their condition and treatment plan. They wanted professionals’ full attention during discussions, to feel heard and have their life experience acknowledged. They generally accepted long waits, understanding that healthcare systems are under pressure.
- Security. People wanted to feel safe going home and managing their health issues. Almost all had delayed attending hospital in the hope of avoiding unfamiliar hospital processes or burdening the NHS.
- Control. Some wanted to be fully informed and make decisions independently; others did not wish to know the clinical details. Some preferred relatives to make decisions; others did not want their contacts to be ‘bothered’. Many were concerned about changes to their medication.
One interviewee said: ‘’My fear is that I can’t get there quick enough when things go wrong, because I can’t move, and that frightens me. I fry my bacon now, I don’t grill it – because, well I don’t want to set that on fire again. Fire frightens me more than anything else.’’
Functioning
- Physical problems. People wanted to be able to look after themselves, get around their environment, and continue enjoyable activities.
- Emotional and social problems. Interviewees with milder frailty were concerned about caring for loved ones; people who had more severe frailty did not want to be a burden on others.
- Relief. They wanted to feel better from illness, injury, or low mood.
An interviewee living with severe frailty said: ‘’Even though I walked slowly, at least I was able to do things for myself. Whatever little that is, at least it gives me a little bit of independence. Now I cannot stand up or do anything for myself. Not been able to shower, not been able to go to the loo. So, I want to get back on my feet. I want that to return to normal at least.’’
Why is this important?
This study explores what older people with frailty think are important and meaningful outcomes when they are in the emergency department.
The NHS tends to focus on survival and waiting times when measuring the quality of emergency care. But the main concerns of the people in this study were of losing their autonomy and of feeling unsafe. They wanted relief from distressing symptoms, to feel in control, and support to manage as independently as possible. They wanted to return home, but only if they felt safe doing so. Participants wanted different levels of detail about their problems, and of involvement in decision-making.
Better understanding of what is most important to people with frailty could help healthcare staff focus on meaningful outcomes. Healthcare professionals and people with frailty need to work together to explore possibilities and preferences. Tailored, holistic care includes consideration of how people will manage at home.
The researchers say that the public contributors’ involvement in designing and carrying out the study meant that the team could assess what really matters to people. Previously, partnering with people with frailty has typically been seen as too challenging. Relatives or healthcare professionals have been relied on instead. The team says this work demonstrates that successful engagement with people with different levels of frailty is possible.
What’s next?
Many healthcare settings already use risk scores to identify people with frailty, but more work is needed to ensure they receive the aspects of care they consider important.
The results suggest emergency departments and policy makers may need to rethink how they measure good quality of care. This study could help develop person-reported outcome measures (PROMs) for patients with frailty. Such measures are unlikely to replace waiting time targets and mortality rates, but could be used alongside to assess whether hospitals are providing care in a way that really matters to the patient.
The research team, in collaboration with the public contributors, have now developed a questionnaire with 9 questions to measure person-centred care for frail people in emergency departments. This is being trialled in around 300 patients and should be ready to be rolled out soon.
The study included diverse participants, and used translators where needed. But it was conducted at a single hospital. Further research could explore whether the views of people with frailty differ in other areas.
You may be interested to read
This Alert is based on: van Oppen JD, and others. What matters most in acute care: an interview study with older people living with frailty. BMC Geriatrics. 2022;22:156.
A plain language report about the research, developed with public contributors
More details about work being done to develop a more meaningful outcome measure can be found here.
Another study by the same team involved carers in discussions about healthcare goals.
Funding: This research was funded by the NIHR Doctoral Research Fellowship programme [NIHR300901] with additional support from the British Medical Association Foundation for Medical Research.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
