In recent years the language used to describe what constitutes good end-of-life care has changed. ‘Shared-decision making’, ‘patient autonomy’, ‘choice’ and ‘advance care planning’ have become buzzwords. This is to be welcomed, of course, but has the sector really changed in practice? According to several policy reports, in addition to feedback from people who use end-of-life services, not particularly.
We wanted to explore some of the barriers that prevent people from receiving the care and treatment that’s right for them, so we spoke to hundreds of people nearing the end of their life and their carers via questionnaires, focus groups, and in-depth interviews, and found that some basic needs are not being met.
People reported not being given clear information about their symptoms, prognosis, or treatment options. When people did want more information, they didn’t always know the right questions to ask in order to obtain it. Many felt they weren’t always supported to make meaningful choices about their care and treatment. Opportunities to instigate important conversations about future care planning were missed. Where people didn’t feel empowered to make informed decisions about their care, it sometimes had a direct impact on care quality.
Specific insights included “I did not feel well informed on the last day of my mum’s life”; “I wasn’t prepared for health professionals not giving you the information you need or not answering questions at all”. Another noted that “one major thing we’ve learned is that you should never assume that information is shared between professionals”, for instance between the NHS and care homes. Others stressed the need to “be strong – you may have to push” to get all the information you need, and that they “wished they’d known what questions to ask.”
Healthcare professionals are in need of practical solutions just as much as those they are caring for.
In light of these findings, it is hardly surprising that person-centred end-of life care remains elusive for many people.
In contrast, those who were able to have open conversations about death with loved ones and healthcare professionals said that they felt more in control and prepared for what may lie ahead. Clearly there is much we can do to facilitate more of these positive exchanges and make them the norm, not the exception, for people faced with a life-changing diagnosis.
Calls for policy changes are certainly needed to help address these issues in the longer term, but we also urgently need tangible solutions that will make an immediate and vital difference to people currently living with terminal illness and those around them.
Healthcare professionals are in need of practical solutions just as much as those they are caring for. Although many will be experienced in treating terminally ill patients, as one physician we consulted noted, “not all doctors are good at communication”. Our interactions with a range of healthcare professionals who care for and treat people with life-limiting illnesses have shown that many have a desire to encourage more open conversations on what is often an emotive topic, or to complement the current high standard of compassionate end-of-life care already being provided by their organisation.
To provide a catalyst and a guide for some of these difficult conversations, we developed a booklet using the first hand insights gained through our research, primarily designed for people newly diagnosed with a terminal illness. Any tools that can also guide and inform an open, honest, two-way decision-making process between patients and healthcare professionals are to be welcomed. We must respond to some of the shortfalls exposed by our research with practical responses alongside longer term transformational change, and there certainly appears to be an appetite among health and care professionals for tools that can help them day-to-day to provide more person-centred care. Without practical resources that support patients to have meaningful conversations with healthcare professionals about their personal values and preferences, ‘person-centred care’ will continue to remain merely a buzzword and not reality.
Featured image credit: hospice caring nursing-elderly by unclelkt. Public domain via Pixabay.