Experiences of end of life care
by Emma Clare
“I’m just in the bath, make yourself at home I’ll be down shortly!”, came the voice from upstairs. I checked my notes for this call, my first to Stanley’s after he returned home from hospital with a care package for a morning and evening visit. The column of ticks down Stanley’s form told me that he could not wash or dress unaided, so I was surprised and slightly worried to hear that he was in the bath alone. However, I did as I was told and took a seat in the living room, admiring the contents of the ceiling-high bookshelves, paintings and photos telling the story of 98 years of life. After ten minutes or so Stanley joined me, well-groomed and smartly dressed, and after initial introductions and a few jokes (he had a fantastic sense of humour) I raised the topic of my confusion regarding the form I had stating his care needs. “I’m really pleased to see you’re having no trouble being independent now you’re home, I’m just curious – why such a quick change?” I asked. “Well I wouldn’t have any visits if I hadn’t said I needed help, you don’t get visits just for being lonely, and who wants to die lonely?”.
I couldn’t argue with that.
In the next year I spent as a domiciliary care worker, visiting patients who had returned home from hospital that required additional care in the form of up to four visits a day, I was sad to find that loneliness and isolation was the norm. Sometimes this was due to the person having no contact with family or friends, but often the person was surrounded by family, sometimes living with their adult children. Their loneliness was more camouflaged but, particularly where the person had a terminal diagnosis, intensified by the fact that the person was nearing their death and had nobody around them who felt willing or able to acknowledge this fact. This is not to blame either party – denial can a natural and common reaction as Elizabeth Kubler-Ross taught us, but this did not make it any less heart-breaking to watch. It was also very easy as a carer to fall into the same denial, partly as a coping mechanism for the fact that the majority of our calls were only fifteen minutes long with no allotted travel time to get to the next house, forcing us to shorten calls even further.
I tried my best to facilitate conversations between my clients and their loved ones in the short time I had. One client I visited four times daily for the last six weeks of life, Ron, sticks with me. Ron’s wife Anne had not acknowledged that Ron would soon die, despite his deterioration being rapid and therefore sadly, very much visible. On my first visit Ron was sat at the dining table eating Sunday dinner dressed in a suit. His wife informed me that he was a university professor before his retirement and had always prided himself on dressing well. Four weeks later Ron was unable to get out of bed and could only manage small liquified meals, but Anne still requested that I assist him to dress him in a shirt and tie and serve him a full meal. Anne would leave the plate next to Ron, I would prepare and feed him a small liquid version along with his favourite yoghurt if he felt up to it. Whilst he tried to eat as best he could, Ron would tell me that he had things he wanted to say to Anne before he died, but Anne would avoid these discussions and would speak to him as if he was going to live for many more years. One day, when I could tell that Ron did not have much time left, I caught Anne on my way out - “sit with him Anne, he wants to speak to you, it’s time”. She did, and the next day they told me separately how relieved they both felt. Three days later Ron died peacefully, supported by the fantastic Macmillian nurses who helped ease his pain, and I broke the usual rule that visits stop immediately upon the death of a client to go and pay my respects and see Anne one last time.
Ron was lucky in that despite Anne’s avoidance of talking about his approaching death, she had welcomed support from the palliative care teams, and they enabled Ron to die peacefully at home as he wished. Other families I visited had acknowledged the fact that their loved one would die in the very near future, however they had not had conversations, or perhaps had not been given the opportunity to have, conversations with healthcare professionals about what they could expect to see during the dying process. This often resulted in emergency hospital admissions and futile, aggressive interventions such as CPR despite the death being expected. I began visiting Mary in the last month of her life. She was very weak, and spent her time in bed looking out of the window at her garden between frequent and deep sleeps – a natural and expected part of the dying process. As I helped Mary to the toilet on each of my visits, she talked to me about how she felt at ease with the fact that she would die soon, and that all she wanted now was to be able to die at home, in peace and free from pain.
Mary lived with her son, David, who had stopped working in order to care for her and was doing an admirable job. David was in many ways prepared for his mother’s death in the practical sense – funeral plans had been completed and Mary’s will discussed. But, he did not have any idea of what to expect in Mary’s final days or hours. I arrived one morning to find that Mary was drifting in and out of consciousness. David was frantic and checking her pulse: “it’s not right, I think her heart’s stopping, please do something” he begged me. I felt Mary’s pulse and noted that her breathing had also changed. I was utterly torn – this was the first cardiac arrest I had ever been present at, and whilst my first aid training was telling me to start CPR, my own heart was telling me that Mary had wanted to leave this world peacefully. As I grappled with my dilemma, David reached for the phone and dialled 999, and began relaying instructions to me – instructions I knew but felt reluctant to follow. “Get her onto the floor” he said, and began pulling Mary out of her bed. I held her shoulders and helped guide her body, a dead weight, onto the floor. “Check her breathing” he said, and I followed my training – ‘look listen feel’ but found myself deliberately pausing for longer than the usual ten seconds, in the hopes of buying Mary enough time. Ten minutes later Mary’s peaceful being had been transformed into a mass of cables, monitors, a mask and the gut-wrenching feel of ribs cracking as two paramedics and I tried in vain to bring Mary back. I was thankful that we did not succeed. Although I was sad to say goodbye, and sorry for David’s loss, everything Mary had said to me in the short time I had known her made me certain that she would not have wanted us to prevent her death. After this, I always made sure that I discussed DNACPR certificates with patients and families, as the presence of this documentation would have enabled Mary to die gently in her bed as she had wished.
It is thanks to Mary, along with Ron, Stanley and the many others I cared for that now, ten years later, I am dedicating much of my time to researching and teaching ways to improve end of life care via my roles as a trainee Health Psychologist and End of Life Doula. I am passionate about facilitating discussion between individuals, their families and medical professionals to enable them to express their wishes and preferences, and to support them in making these a reality. I believe that everyone has the right to a ‘good death’, whatever that looks like for them.
Those of us who have the privilege of being with people at the end of their lives can help by sharing stories like these, so that we can contribute to demystifying death and dying. In doing so, we can open up the conversation and pave the way for better person-centred and community-based end of life care for us all.
*All names and identifying details have been changed to protect the privacy of individuals.