Why is talking about dying such a challenge?

In May, Stephen Sutton died at the age of 19 years from bowel cancer. His love of life and extensive fundraising showed everyone how to live life to the full, even when dying. Death is universal. But most patients and doctors still struggle to deal with the challenges posed by deteriorating health and thinking about dying. How and where people die depends not only on their disease but on their circumstances, options, choices, expectations, values, and beliefs. Open, early discussions about what matters when people are dying are vital if we are to act on the growing list of policies, good practice guidance, and recommendations.

A recent survey of 2055 British adults commissioned by the health promoting palliative care organisation “Dying Matters” found that about half of those with a partner knew about their partner’s end of life wishes. Just 6% had written down their own preferences despite sustained campaigns to encourage public and professional engagement in advance care planning. A parallel study found some improvement in the proportion of GPs who had initiated a conversation with patients about end of life care (75% in 2014 v 65% in 2012).1 The timing of these discussions was not reported, but a Scottish primary care study found that patients with cancer or other advanced illnesses were being identified for a palliative care approach only in the last weeks of life. Fewer than one in five patients with organ failure, dementia, or frailty were on practice palliative care registers when they died. This was because of problems with knowing whom to identify and how to raise the subject of “palliative” care.2

The results of these studies mirror outcomes of advance care planning initiatives in other healthcare systems, where some people embraced opportunities to think and plan ahead while others preferred a “day to day” approach to living well with advanced illnesses.3 This is particularly true of patients with multiple advanced conditions or non-cancer illnesses, such as chronic obstructive pulmonary disease.4

However, even in cancer care, where death is an acknowledged reality, chemotherapy is commonly offered in the last months of life and is associated with an increased risk of the patient having a medicalised, death in hospital.5 By contrast, early palliative care that facilitated a gradual shift in prognostic awareness led to improved quality of life and even prolonged survival in patients with lung cancer.6

The situation in secondary care is similarly problematic, as shown by an audit of 149 hospitals in England by the Royal College of Physicians. Although hospital staff recognised most of those patients entering the last days of life, documented discussions, particularly with patients, about impending death and treatments such as clinically assisted hydration and nutrition seemed to be lacking in many cases.7 Many factors contribute to this state of affairs, including a focus on investigations and treatment, uncertainty about prognosis, and concerns about how to communicate with patients and families who have diverse information needs, expectations, and coping strategies.8

Cardiopulmonary resuscitation is another source of controversy, and there have been calls for greater clarity about how decisions are made and who should be consulted. In the United Kingdom, professionals are directed to complete a “do not attempt cardiopulmonary resuscitation” form if a cardiac or respiratory arrest is an expected part of the dying process, so that resuscitation would be unsuccessful and prevent a dignified death.9 It is essential to talk with patients and their families about shifting goals of care to focus on ensuring patients’ comfort as they are dying, but detailed discussions about the process of cardiopulmonary resuscitation may be distressing and unwarranted. Where there are doubts about the outcomes of resuscitation, the risks and benefits need to be discussed with the patient, any nominated proxy, and family members able to provide insight into the patient’s wishes. The poor outcomes of cardiopulmonary resuscitation in people with advanced life limiting conditions and the adverse consequences of attempts at resuscitation need to be highlighted.

So what more can be done to encourage the public to talk about death and dying and enable professionals, patients, and families to have better conversations about care at the end of life? We can actively support public awareness campaigns and make information and resources to help people start future care planning more widely available in public places and in all healthcare settings. Problems in healthcare delivery tend to lead to calls for more education of staff.7 Evidence points to a need for specific training in effective ways to raise the subject of dying well before the last phase of life. Professionals who are comfortable with sharing information at a pace that people can tolerate and in ways that preserve their ability to function in the world will be less worried about causing loss of hope and distress.6 10 It is common, and often helpful, for people to shift backwards and forwards between being more realistic about their future and expressing hopes that are less likely to be realised (box).

The World Health Assembly recently endorsed a resolution calling for palliative care to be fully integrated into healthcare in every setting and throughout the course of advanced illnesses.11 Palliative care specialists offer expertise and support, but ensuring that we provide good care for the 1% of the general population and the 30% of hospital inpatients who are in the last year of their lives is everybody’s business.12