Managing the end of life needs of frail, older adults in the community: the role of a hospital based community outreach team for older people

Abstract

Background: Ireland has the longest life expectancy in the European Union (84 years of age for women, 81 years of age for men). However, most adults face chronic disease and dependency in the years prior to death. Frail, older adults often suffer from chronic pain, depression and/or anxiety and falls, which are often underassessed and undertreated. Older adults living with significant care needs require a healthcare workforce that can help provide support to those living in the community, with significant responsibility falling onto families. Our current healthcare systems are designed around periods of acute illness and are ill equipped to care for the needs of multimorbid and frail adults with chronic and worsening mobility, cognition and function. In addition, these patients are more likely to spend significant amounts of time in acute hospitals nearing the end of their lives, not without significant risk and often with poor outcomes and costly health care expenditure in the period just prior to death. Twenty years ago, Joanne Lynn and David Adamson authored Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. They showed three main trajectories of chronic illness and their relationship to level of function over time, chronicling the way we die today. The first trajectory follows a period of short decline followed by death, seen often in patients with malignancy. The second trajectory is seen by people living with COPD or heart failure and is characterized by intermittent exacerbations over a longer period of increasing dependency followed by death. Finally, the third trajectory is one of ‘prolonged dwindling’ often seen in patients with dementia, stroke and frailty. The uncertain trajectories associated with chronic organ failure and prolonged dwindling make advanced care planning and care management paramount. Patient centred care that integrates the preferences and needs of both patients and families is important throughout life but especially at the end of life. As patients near the end of their lives, clinicians have a responsibility to acknowledge this and incorporate patient’s wishes into their care plans. Patients often have an increase in the frequency of hospitalization, and this can be used as a time to have serious illness discussions regarding goals of care. While it’s not feasible for all patients to die at home (or in a nursing home), hospital deaths are generally considered undesirable as a quality measure. According to The Irish Longitudinal Study on Aging (TILDA), Ireland has a high proportion of hospital deaths, indicating inadequate community and home care supports. Recognizing patients who are likely to benefit from supportive and palliative care approaches in the community with a goal to die at home can be done using a combination of tools and based on advanced care planning discussions. Methods: The Department for Older Persons Services at the Mercy University Hospital recognised many in-patients with advanced chronic disease and advanced frailty who had multiple recurrent hospitalisations towards the end of their life. There is a deficit of specialist supports in the community to help patients, families and primary care services deal with some of the complex issues of advanced chronic disease and frailty management. The existing community palliative care services do not have specific expertise in the presentations with advanced frailty. Those patients with a prolonged dwindling trajectory towards death are particularly difficult to manage in the community for existing palliative care and primary care services. Due to the deficit in existing services, in 2021, our department for Older Persons Services allocated a team consisting of both medical and nursing expertise staffed by a Registrar and Advanced Nurse Practitioner in Frailty, under the governance of the existing consultants in geriatric medicine, to form an outreach service. Inpatients who appear nearing end of life who have expressed wishes to avoid further hospitalization and to die at home are identified during their admission. These are often patients with multi-morbidity who have had multiple admissions. They have frailty syndromes such as falls, delirium or reduced mobility. In addition, patients known to the Geriatric Medicine Department who are no longer able to attend regular clinic due to a deterioration in mobility and are largely housebound are also often referred for home visits in the community by the outreach team. Home visits are designed to support the transition of care from inpatient to home but also the transition to a more supportive and palliative approach. A first home visit usually takes place within 24 hours of hospital discharge to identify any potential challenges. Visits include a discussion of the hospitalization, medication review, assessment of the home environment and family members are given the opportunity to ask questions. We provide education on end of life, trying to anticipate needs and often see patients and families through periods of deterioration until they stabilize again in a ‘new normal’ or begin the process of active dying. Families and carers are given a telephone number with any concerns weekdays between 9 am and 5 pm. We have access hospital diagnostics and planned admission where required. We communicate with Public Health Nurses, General Practitioners and the Community Palliative Care Team at Marymount University Hospital and Hospice. Results: Families and carers supporting loved ones who wish to avoid further hospitalization and die at home benefit from combined medical and nursing support & specialist expertise the team brings. We regularly address concerns including delirium, falls, noncognitive symptoms of dementia, insomnia, constipation and impaction, urinary retention, pressure ulcers, oral care and infection. There are multiple transitions associated with end of life and common concerns relate to dysphagia, decreased oral intake, managing symptoms at end of life with oral and transdermal medications and signs of active dying. Case studies in our poster illustrate patients who were able to avoid hospitalization over periods of several weeks to several months and were able to die at home in accordance with their wishes. Conclusions: Addressing end of life for multimorbid patients living with severe frailty is a significant challenge for healthcare systems worldwide. Hospital admission is an ideal time to begin conversations regarding goals of care and initiate advanced care planning. Advanced care planning is an active process over time & requires support and expertise. For those patients with advanced chronic disease and frailty who want to die at home, having access to experienced medical and nursing input with significant gerontological expertise has been invaluable. The expertise of the team support patients and families navigate a complex system and can help individuals to die in their preferred place of death and avoid unnecessary hospital admission. This initiative by the older person’s service embodies the values of the Mercy University Hospital. The service with a high level of excellence with complements from patients, families and general practitioners. It is a true service of team spirit where the outreach team work together with hospital colleagues and community colleagues to the common goal of following the patients’ wishes. Our community outreach team for older people show justice in honouring the rights of the patient & providing a patient centred service that avoids costly unnecessary in-patient care. The service shows respect to the patients wishes and with compassion supports patients towards the end of their life.