Sometimes, when things get a bit tough, it is easy to forget that we have a choice. We have a choice about where and how we die. With a diagnosis of terminal illness, we are given plenty of time to consider our options, yet still, patients and their families are not offered the choice. The choice of whether to die at home, hospice or in hospital.
In our area, Surrey, I read that the authorities are letting terminally ill patients down at the end of their lives. They are not being offered a choice, clinicians are still reluctant to engage in these discussions. We were fortunate to know what we wanted, and who to ask to get it. And everyone was very obliging, but what if we hadn’t known? What would Mom’s death have been like then?
Surrey was in the lowest 20% of primary care givers in England for discussions between hospital care and peoples’ preferences about where they want to die. And overall quality of end of life care was scored at just 40.5%, which I find shocking (reported in Surrey Advertiser 13 July 2012).
In response to the article, a spokesperson for Central Surrey Health wrote a letter to the editor (Surrey Advertiser 27 July 2012) saying that in the Epsom area in the last six months, district and community nursing teams had enabled 80% of patients to die in the place of their choice, usually at home. This is heartening and, in our experience, these nurses are fabulous at their jobs.
And then there was the sad letter from a concerned friend, who had lost someone special in hospital (Surrey Advertiser 13 July 2012). The patient had suffered a stroke and was critically ill. The clinical team had implemented the Liverpool Care Pathway, a series of clinical observations, actions and discussions with family, which ensures that the patient will have a dignified, comfortable death. There is no further intervention or treatment. The friend was so unhappy with this approach, and felt that the patient’s illness should have been allowed to continue, with at the very least nourishment provided. Now, if only someone on the nursing or clinical team had taken the time to talk to the friend, her anguish could have been soothed and she could have been supportive.
I firmly support the right of everyone to have the choice.
For more information and support to talk about dying, see Dying Matters.
Lesley
I am a scientist and a blogger. I have a PhD in the genetics of cardiovascular risk. My Mom died of cancer last year. We learnt a lot and met some amazing people. I want to share with others how to live positively with cancer, and make choices in end-of-life care. My top tip: Ask the difficult questions.
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