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Dr Catherine Millington-Sanders: my experience
Dr Catherine Millington-Sanders is a practising Macmillan GP, EOLC and Cancer Commissioning Lead in Richmond. She is the GP Lead for the ‘Find your 1% Campaign.
Last year, one of my patients came back to see me after his oncology appointment at hospital for his lung cancer. I had known him and his wife for many years. They had no other family and although now very elderly, they were both fiercely independent.
He told me that at the oncology appointment they had explained that the chemotherapy had not cured his cancer and he had only a few months at best to live. He sat down with his list of important things that he wanted to talk through.
There were three things on it, all of which he told me he had discussed and decided with his wife:
1. He did not want any further chemotherapy or active cancer treatment as he wanted to spend every moment he had left with his wife and not in hospital.
2. As he did some minor caring for his wife, such as dressing her and helping her wash, he wanted me to help him get a carer for a few hours a day to start with.
3. He wanted everyone in the surgery to know his wishes!
He welcomed expanding on his preferences for care. He wanted to be cared for and die at home. He was happy to receive oral antibiotics ‘if the doctor thought they would be helpful’ but otherwise he did not want further life-prolonging measures and he definitely did not want to be resuscitated. He seemed so relieved when I asked him about this last point, and I realised that if I had not asked him at this point, I would not have given him the opportunity to share this.
Alongside his clinical picture, the answer to the ‘surprise question’ was ‘No’, I would not be surprised if he died within a year. So I initiated a discussion about the end of life care register. I explained, where possible, I would endeavour to be the doctor that visited him as he deteriorated but if there were times that he needed to be seen by another health care professional, this would enable them to view the decisions we had discussed to support his care preferences.
What happened next?
As a result of advanced care planning discussions, a Preferred Priorities of Care document (PCC) was put into place and a Do Not Attempt Cardiopulmonary Resuscitation order was signed and he kept a copy with him at home. He consented to be on the end of life care register and our discussions were recorded, including details of where he kept the DNACPR record. His details were reviewed and updated regularly.
He suggested that “his wife was not getting any younger” and she had several health problems. He wondered if she might be able to go on the register too! The truth was that when asking whether I would I be surprised if his wife were to die in the next year, the answer was also “no”.
What difference did this make?
He and his wife expressed marked relief that they could discuss their wishes with me. They both updated their wills and Lasting Power of Attorney choices. Our conversation inspired them to plan everything, down to the funeral. He was able to tidy up all his affairs.
They were eligible for a carer, who came in the mornings to help his wife wash and dress, and someone to help with meals and light cleaning as he deteriorated. Gradually they both shared this care. This meant he and his wife’s quality of life improved as they could both relax and enjoy the time they had left together rather than him having to worry about elements of caring for his wife. His wife, equally, no longer had to worry about him having to care for her.
He continued to deteriorate and died peacefully on the LCP at home with his wife three months later. His wife was elderly and very frail. She had agreed to go on the end of life care register with her husband and welcomed documenting her wishes too. Several months after his death, she died in their bed, where she had wanted to die, with Hospice at Home care in place for her last few days. They had both planned to be cremated and then buried in their chosen plot under a cherry tree – a loved symbol for them as he had proposed to her under a cherry tree some 66 years before.
I would highlight two particular lessons from this
1. If you do not ask your patients to record their preferences for care and death, then you are not leaving this choice up to your patient, instead potentially leaving their fate to chance.
2. Remember the feeling of how good you felt helping just one of your patients’ dying care wishes come true. Try to recreate that for all of your patients if the answer to the “surprise question” is “no” and you would not be surprised if they died in the next year.
Triggers for end of life care conversations
If you find opening discussions about end of life difficult, the following conversation openers might help:
- What are your thoughts about the future? How do you see things going?
- In thinking about the future, have you thought about where you would prefer to be cared for as your illness gets worse?
- What do you see happening with your illness over the next few months?
- It would be good to discuss what kind of medical care you would want if you should get sick again. How do you feel about talking about this?
- Professor Mayur Lakhani
"Creating a plan of care transformed the situation": View Professor Lakhani's case study
- Case study: Dr Peter Nightingale
"Supporting a patient's dying wishes" : View Dr Peter Nightingale's case study