A good death
Julia Sidhho is a support worker enabling people, in her words, to have a ‘good death.’ Here she describes her specialist job.
My work supporting people at the end of their life is not dissimilar to what other support workers do at Bromford – it’s just providing support in a different setting. The only key difference is that I need to build relationships much more quickly due to the limited time my customers may have. I can help with the social aspect of lives as I would do in day-to-day support work. I’m not a clinician but I work in partnership with healthcare professionals including St Giles hospice in Lichfield to support the customer and their family.
Just because a person has been given a terminal diagnosis does not mean that their everyday issues and stresses disappear. This service is there to help support and alleviate these to enable them to enjoy their remaining time and die at peace. One gentleman almost ‘needed permission’ to die – he was stressed as he wanted something in writing to say his wife (who had dementia and was in a home) would be looked after when he had gone. With the help of an amazing solicitor, all his concerns and anxieties regarding his wife’s welfare were addressed. Due to time factors the solicitor sent email confirmation to me which I gave to the gentleman who died shortly afterwards with the email in his pocket.
Part of my role is to provide emotional support – I can signpost people to professional counselling but find that most people just want to talk to someone they know who is outside of their immediate family. It is recognised that a patient’s mental wellbeing can play a large part in symptom control, pain levels and general wellbeing. This role is also about recognising changes in the patient’s physical and mental health so that referrals can be made to the appropriate services promptly.
Lots of people are nervous about bringing in other agencies such as medical and social services, as they feel their choices will be taken away and services will take control of them. I am there to bridge the gap and to give customers confidence that they have control and choices. I give the scenario that I'm their ‘remote control’ and can give them all the information, support and options to help them make informed decisions. If the individual has capacity then my role is to ensure their wishes around end of life are respected by everyone. For example, one lady had always expressed the wish to die on her sofa as she wanted to be able to look out of her patio doors at her garden. Everything had been put in place to enable this. A visiting healthcare professional challenged this and wanted her moved upstairs to her bedroom. I discussed and remained firm about this lady’s wishes which was backed up by her St Giles specialist nurse and family. Through my perseverance this lady died peacefully on her sofa.
I provide a largely reactive service so while I have planned appointments (I currently have 23 patients) the day can change quickly so I need to be flexible. I only plan two visits a day and those visits aren’t timed. I could be half an hour or four hours. If I don't have long appointments, I then have the option to call in on other patients. This service is very much customer led, sometimes I spend many hours with a customer to support them through a crisis but I may then keep in contact by phone or email until they wish me to visit again.
This service is able to allocate time according to the changing needs of the customer which is often more difficult for healthcare professionals. There have been instances when a patient has been nearing end of life and have wanted me to spend time with them and their families to provide support. For example, a patient who was admitted to the St Giles hospice for end of life care did not want any family members apart from his wife to be with him for his last few days. This had already been discussed and agreed with the family. However, he did want his wife to have support from a familiar person. I visited every day to offer that support.
Everyone has different opinions on death. I personally accept it as part of the ‘circle of life’ but I think in the western world we have an expectation that everything can be fixed due to our access to health care and advanced technology and we sometimes think we can cheat death. Death is also for many people seen as a taboo subject. I concentrate on living in the moment and when the time comes, I see it as a positive that I’ve been able to support people to die where and as they want giving them, and their family, a stress-free death.