Talking about dying 2021 resources offer advice and support for any doctor on holding conversations with patients soon after the diagnosis of a progressive or terminal condition, including frailty.
We developed Talking about dying in 2018 because we knew that many healthcare professionals understandably struggled to breach the subject of death and dying with their patients. Three years later this is still true, and during the COVID-19 pandemic many physicians have dealt with lots of death and dying in difficult circumstances.
Most of the original report is still relevant, but for 2021 we have made updates and divided it into sections for ease of use. At the bottom of this page you can find links to mythbusters about palliative care and CPR, the recommendations for physicians, and the original full report with case studies and references.
Why should you talk about dying?
The UK has an ageing population and more people than ever are living longer with multiple health conditions. One in three adults admitted to hospital through the acute take and 80% of care home residents are in their last year of life. Nearly half of all deaths in England occur in hospital. Yet the National Audit of Care at the End of Life (NACEL) in 2019 reported that 29% of patients at the end of their life did not have an individualised care plan.
Talking about dying is never easy, but it is worthwhile. Advance care planning and early introduction of palliative care can improve the patient’s quality of life and mood, reduce aggressive care at the end of life, reduce emergency hospital admissions and even extend life expectancy of certain groups.
Open conversations about prognosis, palliative care and end of life can often be welcomed by the patient or their family as a chance to gain more information about their prognosis and treatment options, and to exercise some choice and preference. Research by Macmillan Cancer Support showed that only 8% of people with cancer who said they had thoughts and feelings about death had shared them with their healthcare team. Of those who had, only 19% of the conversations were initiated by the healthcare professional.
There are multiple opportunities in a patient’s journey for a physician to begin honest conversations. Early conversations during outpatient clinics as well as inpatient admissions can allow patients choice and control over the remainder of their lives. Further down the line, if it becomes clear that treatment might not be not working or would be futile, and the patient is sick enough to die, conversation focus should change to symptom management and discussions about preferred place of death and required support. Often these important conversations take place in crisis, in an emergency setting, with clinicians who have not had time to build a relationship with the patient.
Why is it hard to talk about dying?
Our research in 2018 found multiple barriers to having open conversations about death. A widespread culture of avoiding discussing death and expecting modern medicine to cure all ailments is one. This may be the case, but 77% of the public in England stated that they would want to know if they had less than a year to live. As tough as initiating these kinds of conversations can be, they can help to manage emotions and improve quality of life. Not every patient will want to talk about death, and those that do not want to should have their wishes respected, but every patient should be given the opportunity to have the discussion.
The culture within healthcare itself can also be challenging. Time-pressured physicians understandably may not be able to broach the topic in an outpatient clinic, and there is little privacy on a ward. Confidence among doctors at all levels is another barrier. Great emphasis is placed on seeing a set number of live births in medical school curricula – perhaps there should be an equivalent for end of life training.
All healthcare professionals on a patient’s journey should be equipped to support them in talking about dying. Physicians cannot assume that patients will always have a relationship with their named GP, as traditionally has been the case. Similarly, patients with multiple long-term health conditions will interact with many different specialties. Often the patient will choose with whom and when they are happy to talk about the future – the healthcare professional’s job is to offer them the chance.
The impact of COVID-19
For many physicians, talking about dying was one of the most challenging aspects of the pandemic, or indeed their career.
The pressure on all NHS staff was immense and exaggerated the usual lack of clinical time. Physicians redeployed in the pandemic response may have had to provide more palliative care than they had training for or were used to in their specialties.
For patients seriously ill with COVID-19, the knowledge that they could rapidly deteriorate may have made some more eager to talk openly about their wishes and fears. Restrictions on visitation meant that health and social care staff had an important role in helping patients connect with family, carers and friends. Facilitating video and audio calls between patients who were sick enough to die and their relatives, as well as providing detailed updates on the patient’s physical condition, was very important.
In some cases, there is a need for health and social care professionals to similarly help relatives say goodbye to their family members before the end of their life. Everyone on the ward involved in patient care should be supported to play a similar role, whatever the context and whether communication is virtual or face to face.
The core principles remain the same: be honest, use clear language and avoid euphemisms. With potentially just your voice to go on, the words you choose are crucial, as it can be harder to know whether the person on the other end of the phone has fully understood.