15 Jul End-of-Life Patients and Caregivers May Face Complex Co-Morbidities and Medications
MedicalResearch.com Interview with:
Dr. Kirsty Boyd
Programme theme head (Clinical Communication)
Honorary Clinical Senior Lecturer
Primary Palliative Care Research Group
Division of Community Health Sciences: General Practice
University of Edinburgh
Medical Research: What do we know already about people with ‘multimorbidity’?
Dr. Boyd: We know that an increasing number of patients have multiple life-limiting illnesses or progressively deteriorating health due to several long term conditions or general frailty. Caring for them well poses major challenges and they are often hospitalised in the last year of life. They do not fit well into illness and healthcare models that focus on single conditions. Understanding the experiences of patients and their family caregivers is vital to inform improvements in best supportive care and palliative care. We wanted to build on care models for integrated care of people with long term conditions and consider the needs of those at risk of dying with multiple conditions in more detail.
Medical Research: What did you do in this study?
Dr. Boyd: We analysed 87 semi structured interviews with 37 patients considered to be in the last year of their life recruited from an acute admissions unit in a Scottish regional hospital; a large general practice in England; a respiratory diseases outpatient clinic in London; and 17 of their family caregivers. We interviewed them in their own homes at 8-12 weekly intervals over a period of five to nine months, to explore the interviewees’ understanding of their various illnesses, how they cope with managing complex health problems, and their experiences of care from different services and in hospital and community care settings. The patients were aged between 55 and 92 and they had a variety of different illnesses, including: heart, respiratory, liver and kidney failure; lung cancer; neurological conditions; and mild dementia.
Medical Research: What are the main findings of the study?
Dr. Boyd: These people are living with complex conditions and medication regimens but the care they receive is perceived to be inflexible, unresponsive and poorly coordinated. We tried to explore the reasons for this and find out why these patients’ and family caregivers’ needs were often not identified properly or addressed in a coordinated way. People with advanced ‘multimorbidity’ are not identified for assessment and care planning by health and social care providers in the way that patients with single conditions like advanced cancer, heart failure or COPD would be. The patients and family caregivers likewise have no ‘diagnostic’ label that might help them to understand their health problems and treatments or get the attention they need when the patient’s health deteriorates. If you phone your GP practice and can identify yourself as someone with specific needs, such as a cancer patient with increased symptoms who may already be on a special register, you are much more likely to receive an effective and coordinated response.
Our patients often relied on their family caregivers not just for the practical care and support they provided but also to act as their advocate and the person who organised their care including seeking help and managing medicines. Carers were often carrying a large burden of care and responsibility that at times became very onerous for them. They had no access to support from a professional or team who knew their situation well enough to offer personalised care.
Medical Research: Were any of the findings unexpected?
Dr. Boyd: Yes, we were surprised to find that quite a number of these frail, older people and their family caregivers sometime chose not to access support. This was not just because care was uncoordinated and impersonal, but also because of a strong desire to keep things as ‘normal’ as possible and not to have to relinquish control and autonomy over their daily lives. They accepted their increasingly poor health and intermittent acute episodes of deterioration as due to getting older as much as to having life –limiting health problems. They saw ‘palliative care’ as being care of people who are dying and this did not fit with their views of their own situation as needing to stay as positive and normal as possible by coping with the ‘here and now’.
Medical Research: What should clinicians and patients take away from your report?
Dr. Boyd: People living with advanced multimorbidity need to be identified as patients whose health is deteriorating and who are at risk of dying but who are often not wanting to plan for ‘dying’ or be viewed as a ‘dying’ person. In Scotland, we use a set of clinical indicators to help health and social care professionals recognise which of their patients are at risk of deteriorating and could benefit from care planning and coordination (www.spict.org.uk). We suggest professionals have conversations over time with patients whose health is deteriorating and work with them and their carers to plan for future deteriorations in their health. Talking about what matters most to these people and their families, and exploring their concerns about what might happen if the health of either the patient or caregiver deteriorates may be more appropriate and acceptable than discussing wishes about care when dying. Having a nominated key professional, perhaps from the primary care team, as a first point of contact, regular review of medications to make sure they are still of benefit and making plans for accessing different kinds of advice and support promptly if needed would make care more responsive and personal.
Medical Research: What recommendations do you have for future research as a result of this study?
Dr. Boyd: I suggest that we need to develop and evaluate interventions for people with multiple conditions that focus on reducing the morbidity associated with poor health, on treatments and care likely to improve quality of life, and on patient and caregiver outcomes – respect for autonomy and self-management that includes effective, individualised, anticipatory care planning.
My body’s falling apart’. Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers