By Karen Taylor, Director, Centre for Health Solutions
The National Council for Palliative Care and their Dying Matters Coalition partners hold a Dying Matters Awareness Week in May every year to raise the profile of the importance of talking about dying, death and bereavement. This year, the week runs from 14th to the 20th of May, under the banner of ‘What Can You Do... in your community?’ For the past four years, I have written a blog to draw attention to this important subject, as I am a passionate advocate for good end-of-life care for all and know first-hand that failing to talk about the possible death of a loved one can have serious and long-term repercussions.
As Benjamin Franklin is famously quoted as saying, “In this world nothing can be said to be certain, except death and taxes.” Hopefully, for most of us, we will die after a full, happy and productive life, and in a manner where we and our families feel in control, our dignity remains intact, and we are surrounded by love and compassion. This is clearly not the case for everyone, with premature death due to war and famine still all too prevalent. We also see challenging individual stories played out in the media, raising difficult questions about the role of medical intervention and the right to die.
However, for many people reading this blog, the care and treatment at end-of-life will be dependent on individual circumstances and the ease of access to effective care and support. In these circumstances there is one thing that we can all do to ensure that this experience is as good as it can be, and that’s to talk openly with our loved ones about our wishes, hopes and expectations. Yet, most of us still do not feel comfortable talking about dying, death or bereavement. While everyone’s experience of end-of-life care will be unique, and identifying when a person may be approaching the last phase of life is often difficult and sometimes unexpected, failing to have these important discussions is something that can never be revisited.
As Dame Cicely Saunders (1918-2005), founder of the modern hospice movement, famously said “how people die remains in the memory of those who live on.” For me, this is a powerful reason as to why it’s important to feel you have done all you could to know your loved ones wishes, and that you have done all in your power to help ensure your loved ones live as well as possible until they die – actions that will undoubtedly help the bereavement process. This view is not based solely on emotion, but on research, evidence and personal experience. Let me explain.
Over the past 10 years or so I have researched and published a number of reports and articles on the quality of the provision and experience of palliative and end-of-life care. I have seen examples of fantastic care and heard stories of care that fell way short of what any of us would want for a loved one. Our 2016 report, Vital Signs: How to deliver better healthcare across Europe, includes a section on palliative and end-of-life care and feature the findings from the Economist Intelligence Unit, who placed the UK top in its ranking in its Quality of Death Index 2015.1 This index was constructed with input from international palliative care experts and is based on the fact the UK has comprehensive national policies, extensive integration of palliative care into the NHS and a strong hospice movement. It also earned top score in the quality of care indicator.
However, we also note that the index is simply a tool to enable countries to compare provision with countries in the same region or income groups. Indeed, as we have found in our research, within country variation is often more stark than between countries, and the UK is no exception. For me one of the abiding points highlighted in this section of the Vital Signs report is that palliative and end-of-life care should be seen as an essential service and a human right for individuals and, importantly, there is also a need to normalise the inevitability of death. We also refer to the quote from Atul Gawande “If end-of-life discussions were an experimental drug, the FDA would approve it” – which neatly brings me back to the purpose of this blog, raising the profile of the importance of discussing death and dying.
There is real power in patient stories. Everyone has a story to tell about death and dying, but for some it is hard to articulate, and others may feel no one else would be interested. My own story started some ten years ago, which was the first time I really thought about the finality of my own parents’ lives. This was only because I was summoned home by my mother, as my dad, who had been suffering from several long-term chronic illnesses, was ‘dying’. His condition had suddenly deteriorated, and he had been admitted to hospital where his consultant suggested he might not survive his latest bout of pneumonia. Following a four hour dash up the A1 from Kent to Lancashire, on that occasion, and on at least seven other occasions over the next seven years, he pulled through, albeit each time he was a little frailer and increasingly dependent. He was also very stubborn, refusing to talk about the fact that he may be dying.
We did try to have these conversations, but my dad would have none of it; he simply wouldn’t discuss it. So I had those conversations with my mum. She assured me she knew his wishes and that he had shared his views and feelings with her, but that he didn’t plan to die any time soon. I therefore reluctantly accepted his stance and didn’t talk to him about death or dying.
Then, in December 2014 the call came that we as a family had never even contemplated – the beating heart of our family, my beautiful, kind, indispensable mother had died suddenly of a massive heart attack. Feelings of shock and disbelief aside, there was also a real anger that we didn’t get to discuss this inevitability, as it never seemed likely, especially given my dad’s situation. I’ve written previously about this2 – again as part my contribution to the Dying Matter Week, so I’m not going to repeat it here. I have referred to it to illustrate the point I need to make today.
Because her death was so sudden and unexpected, and no one had talked to her about her wishes, we didn’t know what she wanted. Surprisingly Dad did and, despite his shock and grief, he was able to help us organise an amazing funeral. Unfortunately, the shock and grief took its toll on dad, and a few days after his 59th wedding anniversary (they never did make it to 60), he died. This time though he was with my three sisters who were taking it in turns to look after him. In those intervening weeks, we also talked to him a lot about our lives together, about how we all felt, and about what he wanted, so his dying seemed natural, as all he wanted was to die at home and join my mum. What I will always regret is that we never had any of those conversations with my mum.
My reason for sharing my story with you is to emphasise how you should never take anything for granted and that we all need to have these important conversations with our loved ones. Moreover, Dying Matters Awareness Week and the ‘What can you do’ is a perfect opportunity to raise awareness of the importance of talking about dying, death and bereavement and also to offer or volunteer support to those who are dying Should you need any help in starting these conversations, the Dying Matters coalition has lots of material to help.3