It’s not an easy message. But planning for death is something we must all learn to do, says Professor Mayur Lakhani, who believes the NHS needs many more GPs to provide good palliative care.
There’s no doubting Professor Mayur Lakhani’s professional credentials when it comes to spearheading change in the provision of palliative care. And there’s also no question that he has the personal experiences to match them.
Sadly, Professor Lakhani watched both his parents die from cancer at a time when palliative was very much a fringe service, from which only a small minority of patients ever benefitted.
“When my father died in 1989 there wasn’t really that much palliative care available,” says Professor Lakhani. “Ten years ago, when my mother also died from cancer, things had improved a good bit. I remember the Macmillan Nurse came to see her and she put the syringe driver up and gave her the pain relief she needed. I thought to myself ‘that is absolutely fantastic’.
“But in the end my mother died in hospital. And as a family doctor, I know a great many people are dying but are not recognised as dying, so they don’t get palliative care. So I decided that I would do something about it and I became chairman of the National Council for Palliative Care.”
The NCPC is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
It was set up by the late Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement, and campaigns for everyone nearing the end of life to have access to the highest quality care and support, ‘wherever they live and whatever their condition’.
As chair, Professor Lakhani also plays a pivotal role in Dying Matters, a coalition of 30,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
Membership includes everyone from hospices, care homes and GPs to funeral directors, lawyers and faith groups.
“The objective of Dying Matters is to have a great national conversation about death and dying and to get, in effect, advance care planning,” explains Professor Lakhani. “It hurts me that so many people don’t get the care that they need. It’s estimated that 92,000 people a year in England alone don’t get palliative care, so they either die in hospital or at home with uncontrolled symptoms. We need to change that.”
Thankfully, he adds, things are changing in the wake of the 2008 National End of Life Care strategy. More people are being allowed to die at home and things are moving in the right direction.
But Professor Lakhani’s personal target is to get more GPs to identify – in advance – patients who are dying in time to help them draw up a proper care plan.
“Let’s say you’re 55 or over,” he says. “Just think ahead to who’s going to make your decisions, or what would happen if you developed a serious illness like cancer or a serious heart disease? The best advice is to think ahead. Talk to your doctor, tell other people about your decisions. In effect, plan for your death like you plan for birth.
“It’s a difficult thing to talk about and I don’t underestimate the difficulties. I know a lot of my colleagues find it hard to discuss. It’s scary to tell someone that their life is coming to an end. But there’s a method to breaking bad news (see below). Death is an inevitable part of living but it’s possible to die well with early identification and good services.”
The major obstacle at the moment isn’t a lack of enthusiasm as much as a lack of manpower. Planning advanced palliative care means GPs must allocate patients more time – the one thing they do not have much of.
Professor Lakhani says: “The number one challenge is we haven’t got enough GPs. We are 10,000 GPs short in this country so that means people are not identified for palliative care as they should be. It is hard to get good round-the-clock care for patients in the community and that’s why they end up in hospital. We are struggling with workforce and the workload is rising. We need more GPs, that’s a definite, and I think we need more resources in the shape of bigger primary care teams and more community nurses.”
Constant NHS reform is often blamed for a lack of continuity in services. But Professor Lakhani believes the emergence of clinical commissioning groups has been a ‘very positive development’.
“For the first time in more than a decade,” he explains, “I have seen my Primary Care Organisation really majoring on end of life care and the other two CCGs I work with are doing exactly the same. There is a long way to go and not everyone is doing all that they can.”
But he has a clear message for other CCGs which have yet to prioritise palliative care in the way it deserves:
“Make the most of your powers. You have the budgets and the authority. Don’t let providers come and tell you ‘this is what we need’. Make the most of your clinical leaders, the GPs, by asking them what’s working well and what isn’t.”
The ideal palliative care model, he says, would be community based teams organised around federations. A federation of 30,000 to 90,000 population might have its own palliative care nurses and geriatricians. It would set a framework, ensure standards and slash bureaucracy.
“My message to the government and decision-makers is simple – make end of life care a priority,” says Professor Lakhani. “How we care for people who are dying is a litmus test for our society.”
The art of breaking bad news
Breaking bad news is one of the hardest tasks in medicine, requiring a delicate balance of honesty and sensitivity. So what’s Professor Lakhani’s formula?
“We have special training in this and have trained a lot of GPs. First we make sure the room is well set out and there are no interruptions – so phones are switched off. We check what the family of the person knows already, for sometimes they do suspect what’s coming.
“Then you start with very gentle opening questions around ‘I see you’ve come to discuss a letter from the Consultant today. What do you know already so far, or how did you feel when the Consultant told you about what’s wrong with you?
“Once you’ve established what insight the patient has, then say something of a warning shot, along the lines of ‘when I saw the letter, I got concerned because it wasn’t the news I wanted to read, Mrs Smith. As your doctor I was hoping for more positive news…’.
“That just prepares them a little and then you pause to let it sink in.
“It may take two or three meetings but I think it’s very important to be honest with people and to ask what’s worrying them. The top three concerns of people who are dying are dying alone, being a burden to the family and having pain. So we reassure them about the services available.
“People get scared but planning ahead is really important, so they can say goodbye, say ‘I love you’ and do things they want to do.
“Some people don’t want to know and we must respect that as well.
“As for us doctors, it’s important that it doesn’t become just a routine or a task. I think it does affect you and that helps you give good care. Showing a bit of yourself to the patient can be very good. But doctors also have to take care of themselves because over involvement can contribute to burnout.”
Professor Lakhani is chair of the coalition group Dying Matters and also chairs the National Council for Palliative Care. When not working as a practising GP, he also serves as chairman of NHS West Leicestershire CCG.