Last May I wrote about the launch of the Dying Matters Awareness Week (DMAW), whose theme, ‘Talk Plan Live’, highlighted the importance of talking about dying and, importantly, of planning ahead.i On Monday evening (9th May), I attended the launch of this year’s campaign, ‘The Big Conversation: Talking about dying won’t make it happen!’ Once again, the aim is to encourage people to talk to their loved ones about dying so that their wishes can be met and important things are not left unsaid.ii Whilst death happens to all of us, most of us still do not feel comfortable talking about dying, death or bereavement. I hope that by sharing my own personal story, this week’s blog might help encourage you to feel more comfortable talking about the only certainty in all our lives.
While everyone’s experience of end of life care is unique, and identifying when a person may be approaching the last phase of life is often difficult, failing to talk about it is something that can never be revisited. How people die, lives on in the memories of those who are left behind, feeling you have done all you could to help ensure your loved ones live as well as possible until they die and that you did all in your power to support them to have a good death can help the bereavement process.
While I have researched and published a number of reports and articles on the quality of provision and experience of palliative and end of life care, attending the launch of the Big Conversation Campaign, reminded me of the power of patient stories. Everyone has a story to tell, for some it is hard to articulate and others may feel no one else would be interested. But, as I sat and listened to a truly poignant but uplifting “premier” of Josh’s story (who died aged 22), I couldn’t help but reflect on my own story and the realisation that if I believe that people should talk about death and dying, then I need to do that myself. I’ve also failed to keep it within our blog word-count limit, so please bear with me.
My story started nearly ten years ago, the first time I was summoned home by my mum as my dad, who was suffering from multiple long –term chronic illnesses (he was an insulin dependent diabetic and had been diagnosed with Chronic Obstructive Pulmonary Disease, Kidney Disease and rheumatoid arthritis) 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.
His doctors suggested his strong heart and indomitable spirit was what helped him pull through. But we knew that it was the love and support of my mum (his full time carer) and family (me (the eldest), my two brothers, three sisters, numerous grandchildren and a growing number of great grand-children) that kept him going and allowed him to defy the odds. Obviously my mum’s meticulous attention to his vast array of medication and other care needs was clearly a factor. While we knew his needs were complex and involved frequent visits from an array of healthcare professionals, as well as numerous hospital visits, none of us appreciated just how hard it was caring for him 24 /7. Not once did my mum let on, all she ever said was that they were fine, happy just being together, surrounded by their family, and looking forward to their 60th wedding anniversary.
Knowing what I do about end of life care and the importance of talking about your wishes, making plans, etcetera, I tried to have those conversations, but my dad would have none of it, he simply wouldn’t discuss it (nor had any of the numerous healthcare professionals he came into contact with suggested to him or my mum that this was something he should think about). 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 the call came that I had never contemplated. 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. Mum had called me two evenings earlier, she had been feeling unwell and had called her GP who visited her at home. Her symptoms were breathlessness, a fluttery feeling in her chest, aches in her shoulders and pains in her lower back and side. Her GP checked her over and could find nothing wrong and assured her she had nothing to worry about. She told him she was worried it might be her heart and to allay her concerns he told her he would refer her for a heart scan – which he said would be in a few weeks.
When she called me later that evening she told me she really didn’t feel well, when she described her symptoms I was concerned that it sounded like her heart and suggested she should phone an ambulance. The next day the pain was worse and my sister persuaded her to phone an ambulance. The ambulance service sent a motorbike paramedic who checked her over and decided she should go to hospital, the ambulance arrived and the ambulance crew reminded each other that the “new urgent care referral protocol “ was not to take a patient to hospital unless absolutely necessary. They explained that they could send another doctor or she could wait for more than seven hours on a trolley in A&E. Unsurprisingly, and given her caring responsibilities, she chose the former (as I suspect would majority of people). I’d like to think that had I been there I would have insisted she was taken to hospital, but hindsight as they say……
The out-of-hours doctor sent by the ambulance team arrived, talked to her, listened to her chest and told her he was satisfied she was OK. She clearly wasn’t and tragically died sometime during that night. The death certificate said the cause of death was congestive heart failure and hypertensive heart disease – something that doesn’t happen overnight and a risk we should have, but weren’t, aware of.
Her death was so sudden and unexpected that no one had talked to her about her wishes, it had never seemed necessary or appropriate, and indeed our expectations had always been that my dad, who was six years older, would die first. When we did talk it was usually about the things she would be able to do when she no longer had caring responsibilities. So we didn’t know what she wanted, but Dad did and, despite his shock and grief, he was able to help us organise an amazing funeral. My sister’s best friend is a funeral director, she was absolutely fantastic helping my family through this difficult time (interestingly few research reports acknowledge the role of the funeral director).
Unfortunately, the shock and grief took its toll on dad, he had lost his soul mate and his reason for living and five weeks and three emergency admissions to hospital later (the antidepressants they prescribed interfered with his diabetes medication) 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 Big Conversation Campaign is a perfect opportunity to raise awareness of the importance of talking about dying, death and bereavement. Should you need any help in starting these conversations, the Dying Matters Coalition has many tools and resources to assist – so what are you waiting for?iii