Rosie is a social carer. She visits Bill Thomas , a 68-year-old gentleman with a diagnosis of progressive multiple sclerosis, twice a day. He lives alone at home but has daily carers who help him with his general activities of living. Bill had not been feeling very well for a couple of days, and it has been getting more difficult for him to complete his breakfast even with her help as he could only swallow small amounts without chocking. When she helped him with oral care, he complained of it being a little sore. When Rosie arrived in the evening, Bill was breathless, shivering and feeling very unwell.
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1. What choices did Rosie have when faced with this situation?
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She could call an ambulance. She could call his son. She could discuss the situation with Bill; however, he may feel that he just really needs a rest so she could help him into bed. She could discuss the situation with him and be firm in suggesting that he needs to be seen by somebody, either the GP or to go into A&E.
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2.What are the options of the GP, Bill and Rosie now?
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If patients have had the chance to have a discussion or series of discussions with their healthcare professionals, they would have made some kind of advanced care plan that included what they want do if they developed an infection. In many circumstances, this may not have occurred. In this circumstance, Bill decided to call the on-call GP; he was very reluctant to go to hospital and had discussed this with his GP in the past.
However, the healthcare professionals still have an opportunity to discuss with a patient who is in the last phase of life, what level of intervention they feel would be in their best interests. If it is possible also to involve their family members in this discussion, this can be really important in ensuring clarity about the decisions being taken and also an opportunity for patients and families to be clear with each other what they want at this stage. Bill may decide to go to hospital to have some investigations and a short course of IV antibiotics but may request that he is not escalated to any kind of intensive treatments should he deteriorate. He may wish staff to refrain from CPR. However, equally, Bill may choose to remain at home on oral antibiotics and opt instead for additional support from the district nurse and palliative care team. Under the UK Mental Capacity Act 2005, patients with capacity can choose courses of treatment that may be considered unsound by others.
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3. What might happen to Bill if he stays at home?
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With rest and antibiotics, Bill may recover from this infection; however, as he nears the end of his life, his risk of infection will rise. If it is a chest infection, Bill may get breathless and uncomfortable. The teams caring for Bill will need to take every appropriate measure to reduce his symptoms and ensure he has adequate support to be comfortable in his own home until he dies.
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4. How might it feel for Rosie to be caring for Bill as he deteriorates knowing she contributed to enabling his decision to stay at home?
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Caring for people at the end of life who have distressing symptoms can be difficult and emotionally demanding. Open discussion between Bill, his family and Rosie, will help, but also working collaboratively with the GP and district nurses will be a huge source of support and enabling patients to feel supported in difficult circumstances can be very rewarding. It will be important for Rosie and the family to consider what may have been done for Bill in hospital and to reflect on the personalised care and sense of control, they are able to offer him, something that is harder to achieve in hospital.
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5. In a few days, Bill seems better: why might this be the case?
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People are unpredictable, and diagnosing dying is an unpredictable task. However, sharing with patients and families the uncertain nature of this is important and revaluating and replanning is important when a patient’s condition changes. Any kind of advanced care plan can be modified if the patient feels differently, changes their mind about what they want and where they want to be. Ensuring clear documentation of these changing preferences can be really helpful in emergency situations. Programmes such as electronic patient records for end-of-life care are becoming useful tools in this area.
