Dying is a part of the life cycle yet many health professionals are afraid to discuss it. We must start talking about this if we are to give patients the best chance of a good death
The reality of death, dying and bereavement is rarely discussed in modern society. Often considered to be the last great taboo, many - including healthcare professionals - find it difficult to talk about openly. This means many patients who could benefit from palliative care never have that opportunity. Too many still die in distress with uncontrolled symptoms or are inappropriately resuscitated. The time has come to change this and to change it for good.
Access to and the quality of palliative care services varies according to age, diagnosis, gender and geography, but my vision is for a "good death" to be the norm. Healthcare professionals need to effect a change in clinical practice to diagnose the dying patient and increase the coverage of supportive care registers, particularly for patients with other conditions than cancer. The development of better generalists is a must, as is implementing comprehensive evidence-based guidelines for palliative care. Most of all, we need to achieve fundamental changes in public and professional attitudes.
I want us as a nation to start a big conversation about death, dying and bereavement. This might appear scary and in the "too difficult" category. Yet dying is an inevitable part of a life cycle that can be planned for, so individual wishes can be accommodated and fears addressed. A society that is more comfortable with talking about this is much needed. An ageing population with complex health and social care needs requires a new caring approach.
I will never forget the example of Matthew. He was in his 80s, had severe chronic obstructive pulmonary disease and was not improving. During my many conversations with him, he implored me to make sure he was not admitted to hospital in the event of deterioration. But due to delays in assessment and planning, via a 999 call he ended up in hospital out of hours and died there shortly afterwards.
The case for changing attitudes is overwhelming. In 2007 the Healthcare Commission highlighted that 54 per cent of complaints in acute hospitals relate to care of the dying, while of the 500,000 or so people who die each year in England, 60 per cent die in hospital whether they want to or not, when the majority state they would prefer to die at home or in community settings. If people want their wishes met, then dying well must become everyone's business. Changes are needed across whole health, social care and housing systems to ensure people at the end of their lives do not continue to be admitted to hospital, die unnecessarily in ambulances or accident and emergency departments or be subjected to invasive medical procedures that will not change the ultimate reality.
How do we change public awareness? The first national strategy on end-of-life care published in July 2008 proposes the formation of a coalition on death and dying to address this issue. It is a privilege for the National Council for Palliative Care to be asked to lead this important endeavour. The coalition will review existing good practice, document existing levels of public awareness and establish a baseline for measuring future success of its work. We are also setting up the structure of an inclusive coalition to ensure it involves key stakeholders.
Engaging the nation in this debate will be crucial. How do you use modern media and campaigns to reach out across different generations, communities and cultures? Here we can learn from previous campaigns in AIDS, cancer and smoking and from other countries, such as Australia, where there are examples of local communities coming together to make death and bereavement a normal part of everyday life - from getting real estate companies to sponsor community gardens of loss and reflection to printing punchy facts about bereavement on the back of beer mats.
What would success look like? More people feeling able to talk to loved ones about their preferences for end-of-life care and to make advance plans; more people aware of sources of advice and support; more people supported to die in their place of preference; more people feeling more comfortable about talking to the dying and bereaved. And ultimately we should see a massive increase in the number of people without cancer on palliative/support care registers.
Hospices, care homes and funeral directors can encourage open days. Places of worship can play a role. Schools, universities and employers can raise awareness too. If home deaths are to increase as part of the campaign, this is a must.
I am confident good progress will be made and I invite others to join me. The coalition will be an ambitious endeavour that will require several years to achieve significant success in shifting public attitudes.