Going home can mean different things to different people. To some it's that joyful packing up of your bag at the end of a busy day at the office. To others, it might be that depressing return home after a holiday in the sun. Or perhaps it's just flagging down that elusive taxi at two in the morning desperate to get off the street and into your jammies. Yet for some, going home can mean a whole lot more. There are people all over the world today in hospitals, who are fighting to get home for that final time. That journey will be the most important one they ever take and we need to help them do it.
Usually weeks, days or hours before a patient dies they start to talk about making a journey. They might ask to have their bags packed, or enquire about where their ticket is or what time they will get their train. You and I might put this down to strong medication. However, David Kessler in his book 'Visions, Trips and Crowded Rooms' says this sort of conversation amongst the dying is quite common. They have a sense of their own death looming even before their bodies start to indicate that the end is close. The medical profession cannot explain why this happens. But the patients are clear on wanting to move on and take a journey. James Brown, the father of funk, famously declared hours before dying "I am going away tonight." For most, however, it is stated simply as a desire to 'go home'.
Most of us have at some point witnessed a loved one dying. We have visited them in hospital and will have heard that common question - "When can I go home?" Of course the various tubes that are attached to their veins, giving life, can be the very reason we find this question difficult to answer. Surely they are better off in hospital, where the tablets and potions are being given. And yet there is no doubt in my mind that hospitals are no place for the dying. So, why are more than half of deaths in the UK today taking place in them? Hospitals are grim, grey and gruesome places. They are superb at the repair work but are no good at the dying, and I do believe we are asking too much of them today. Palliative care should always be given at home. So here is my question: when and how do we let a dying patient finally go home?
Decades ago, this sort of question was never asked. Most people just accepted that they would die at home. They had their family around them, their home comforts and they died in familiar surroundings. However with the advances made in medicine, this has all changed. More people are seeing their final days out in hospitals. Yet in the British Social Attitudes Survey for Dying in 2012, 67 percent of those questioned said they would prefer to die at home. So why are we not achieving this? Only 19 percent of us are managing to go home to die. Why?
For the most part we are not very good at talking about death. We fear it. Although 70 percent of the UK public feel fairly relaxed talking about death in the abstract, we find it uncomfortable talking about our own deaths. This means we simply don't get the opportunity to say how we would like to die and where. We need to be opening up a better dialogue with our loved ones and doctors and nurses need to assist in this. It's important for the dying to have that conversation. And when that happens, we need to be listening and acting upon it.
Fear from family members can also play a part in limiting our chances of going home. Many of us worry about whether we are up to the job of caring for our loved ones. It can be demanding, time-consuming, exhausting and worrying. Yet for those who have looked after a dying person, the majority have said it was an experience they were glad had happened. One friend put it best when she explained that her mother's home death meant she was sleeping in her own bed, looking out onto her pretty cottage garden and painting right up until the last few days. When she slipped away, everyone knew they had done their best for her.
As the population is getting older we are witnessing a 'silver tsunami'. Older age means greater vulnerability to chronic conditions that require serious attention. One might think that dying at home is a costly business that produces a bigger price tag than hospital or hospice care. However that is wrong. The cost of one day's palliative care at home comes in at £145 compared to £425 in any hospital or hospice. So, changing our setting of care and letting our dying go home has the potential to reduce the daily cost of care by £280. We do have a system in place to send our terminally ill home and to provide some care, but it is not without its flaws. There is no 24 hour 7 day a week access to nursing care at home. This care is therefore fragmented and needs more money and training given to it. We need to know that our dying will have full-time specialist care available to them in their own homes when it is needed. After all, if this sort of care is available to our Royalty, it should surely be offered to the rest of us.
When my time comes, I want to be in my own home, my patchwork quilt comforting me with Shostakovich playing in the background (I like him). I want my family photographs in view. I want good quality care and no pain. I want my death to be as beautiful as possible and I want my family to be comforted in knowing that my death was a good one. Dame Cicely Saunders put it perfectly when she said, "How people die, remains in the memory of those who live on." I want those who live on to have a perfect memory. The actress Ethel Barrymore, just before dying in 1959 said to her housekeeper, "Is everybody happy? I want everyone to be happy." I believe Barrymore's home death answered that question.
My thoughts on all of this remind me of a favourite poem by the Greek poet C.P Cavafy. In his poem 'Ithaka' he speaks about making that final destination home. He warns us all to not focus on the final place we land in life but instead, to relish the journey along the way. In other words, spend more time enjoying life and don't worry about where you end up. I am sorry Cavafy, but I disagree. Sometimes that final journey and 'going home' is all that really matters.
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