"Be honest and don't offer false hope"
In an article originally published as part of the BBC's Scrubbing up column, Professor Mayur Lakhani, practising GP and past Chair of the Dying Matters Coalition and the National Council for Palliative Care, discusses why GPs need to be more candid with patients and their families when talking about end of life issues.
Imagine a situation where most people with a common condition are undiagnosed and where opportunities are repeatedly missed to identify the problem and to offer good care.
What is this condition? It's dying.
Each year, an estimated 92,000 people in England are believed to need end of life care but not receive it. As a practising GP I have seen distressed relatives after a patient has died in hospital. Often they have not had a chance to see their relative before they died and were unaware of the seriousness of the condition, despite repeated admissions with deteriorating conditions. Many such patients are never formally identified as at risk of dying and not assessed for end of life care. One relative said something that haunts me to this day: "I wish the doctors had told me that my mother was dying." As a result too many people still die in distress with uncontrolled symptoms, or have futile interventions when this will not make any difference. All of us, including doctors, must do more to talk about dying.
ComRes research for the Dying Matters Coalition confirms there is a widespread reluctance to talk about dying and death. That is why we want to encourage people to talk more openly about dying and bereavement and to make plans around end-of-life care. Most people have not made a plan of their choices and wishes in the event of a serious illness. People often think there is plenty of time when the situation arises but often this is not the case and it can be too late. Doctors are trained to cure, but as people live with long-term conditions, the medical profession needs to change how it works with dying patients. We need to bring dying back into people's homes, rather than in hospital, care homes or hospices.
As increasing numbers of people develop and live with dementia, it is vital that doctors talk about the kind of end-of-life care people would choose, while people are healthy. There's a huge change required in our culture, starting with the medical profession.
Having learnt a lot from the Canadian communications expert Prof Stephen Workman, I would urge doctors to do three things. First, be compassionate but direct when talking about dying. Doctors speaking to relatives about an ill patient who is giving cause for concern, should not just say "your husband is seriously ill", but should add "It is possible that he could die". This allows all involved to prepare.
Secondly, be honest and don't offer false hope. Think twice about offering a false choice of procedures like cardiopulmonary resuscitation (CPR) when someone is actually dying and chances of recovery are miniscule. Instead offer supportive care to keep the patient comfortable and allow them to die a natural, dignified death.
And, thirdly, when doctors diagnose a serious illness they should ask the patient whether they would like to talk about what they can expect and what is likely to happen. Most people die from frailty in old age, and will be well known to health and social care services. Importantly, this gives opportunities for talking about end of life wishes and advance care planning.
My ambition is to reduce the fear of dying and increase knowledge and awareness of palliative care. It is vitally important that every person who is coming to the end of their life is spotted early enough and supported to make a good advance care plan. I know just how hard it is to address issues like this in the frenzy of busy surgeries and wards. But we as doctors need to up our game.
All of us, especially doctors, can play a part in ensuring everyone is able to have a good death.