People are living longer and often with multiple health conditions, including frailty. In 2010, Gill et al. found frailty to be the most common condition leading to death. In their research sample, 27.9% of 383 deceased people experienced frailty in their last year of life.
When a person is living with multiple health conditions and frailty, it can make it difficult to know how well they may recover, or decline, from an often seemingly minor event, such as an infection or a fall. This leads to clinical uncertainty, with health professionals unsure how the patient may respond to treatment and how near they are to end of life. Community hospitals routinely manage the care of older adults with clinical uncertainty. They typically serve as a point of transition between the acute hospital and home, providing intermediate care to support recovery and anticipating and planning for end of life. However, little is known about how patients and community hospital staff wish for care to be managed.
Our recent study aimed to explore patient, family and staff priorities around managing care in community hospitals and during clinical uncertainty for adults with frailty. We asked patients and their families about their priorities and preferences for care using a questionnaire detailing a series of fictional healthcare services, called a ‘discrete choice experiment’. We met staff to understand care and how they use standardised guidelines to support comprehensive assessment, such as using the Integrated Person-centred Outcome Scale for Dementia (IPOS-Dem) in routine care.
Our findings showed that family members were vital at points of transition between hospital and home. Family act as the ‘glue’ to keeping care person-centred and aligned to the wishes of the patient. They supported patients to adapt to changes in their abilities. They also supported staff by informing them of the patient’s care needs and preferences. Family members ensured care was in line with what mattered to the patient. We found that patients prioritise enhanced care services that involved their family in their care. However, patients preferred it when demands on their family were minimised. For example, patients preferred community hospitals closer to where they lived to make visiting easier for family. In addition, patients preferred services where their GP was fully informed about care and treatment to enable continuity of care. Although family were key to care, only four of the 33 patients recruited identified family members that could participate in the study. All four declined to take part. This may reflect patients’ preferences to minimise demands on their families.
‘Yeah and, you know, the family think, I wouldn’t want them out of it completely, if they wanted to come in and discuss things I’d like it to be an option yeah but not feel that they were pressurised into it …’ A patient
Staff prioritised standardised guidelines used across care settings to support continuity of care for the patient when they are discharged. The guidelines worked best when standardised across care settings, for example, GPs and hospitals, to create a shared common language. Using standardised documents could reduce the demands on the family and the patient to communicate care needs to other healthcare professionals. Staff also needed these guidelines to be flexible and adaptable to the patient, context and setting. A participant in the research study commented on the benefits of the guidance document:
‘Making the information movable between care settings so the information is fluent and the same’ An older people mental health liaison
Our research shows that we can maximise the involvement of families by using standardised guidance to create fluency within and between clinical teams during points of patient transition. For example, the Rockwood Clinical Frailty Scale (CFS) is currently used by multiple healthcare settings and largely understood by healthcare professionals to communicate levels of patient frailty. Documents such as the CFS could be standardised across organisations, or nationally, to improve the care of older adults living with frailty, who are moving between hospital and home.
We are pleased to present this work to you from an older patient population who are rarely given the opportunity to indicate their preferences and priorities for the care and treatment they receive, particularly when they are in transition between hospital and home. When conducting this work, we have been particularly struck by the large number of participants who do not have a next of kin. Of our participants, 88% were not able to identify a friend or family member involved in their care. This may mean they do not have someone who will advocate for them or support them to manage their care needs or to adapt to changes. We hope this study has given these people an opportunity to express their wishes for care, as well as bringing awareness to this patient population.