Conversations: the reality of promoting Advance Decisions to Refuse Treatment
My feisty mother died in her 90th year. She entertained 15 family members to dinner on Friday night and on Saturday suffered a stroke. My brother and I were clear that she should be kept comfortable, with good nursing, but receive no active treatment. Some of the five grandchildren were unhappy with this plan. Family tension grew, so we organised for the district nurse, a palliative care consultant, the GP, as well as my brother (a doctor), one niece (a doctor) and myself to meet in my parents’ flat to plan her care. Our father was too upset to join in. The atmosphere was strained until the GP produced a ten year old letter he had received from my mother stating that she did not wish her life to be prolonged if she was likely to end up severely handicapped. The palliative care consultant believed that the stroke was severe and that any recovery would be minimal. All the family then agreed to no active intervention that would prolong life. Following this experience, when I retired from Great Ormond Street Hospital for Children, I decided that I would do my best to help other families avoid the agony and tensions of making decisions in times of crisis.
All residents in care homes have ‘care plans’ most include a DNACPR. However almost no plans consider what the patient would like should they get a life-threatening infection, develop a new disease or suffer a serious fall. Many staff say they are unaware of the possibility of making an advance decision to refuse treatment as part of the care plan.
Having visited many care homes, and as an honorary consultant to a memory service in central London, I have talked to the staff as well as seen clients and their families in their homes. Fewer than 3% of clients have ADRTs. Reasons for this vary. Staff say: ‘I don’t want the client to think that I want them to die’; ‘The client and family will take it the wrong way’; ‘I haven’t been trained to talk about this’; ‘I have a big case load and there is no time’. Some staff have little knowledge of ADRT and think it isn’t legally binding and so may not be respected. Clients and families are also unaware of the possibilities of making an advance decision to refuse treatment. Sophie, a forty year old carer of her mother with severe dementia, suggested that our discussion had come too late for her mother. She is one of 7 siblings, and they had had no discussion about their mother’s treatment. When Sophie and I discussed the value of all the siblings talking about different scenarios, she was greatly relieved that the burden of decisions would not be left to her. Her final comment to me was “it will be hard, but better before the crisis than in the heat of the moment”.
I also visit a hospice on a weekly basis. Out-patients and their families are referred for discussion on ADRT. Most of these patients who are at the end of their life, have had conversations about advance care plans, but few have detailed knowledge of the ADRT. A patient with a progressive fatal neurological condition expressed his gratitude for the various conversations I had with him and his wife. He said “there was simply no time for such conversations in routine consultations”. Another patient with terminal liver cancer and in a wheel chair, came alone in to the consulting room and said “I know nothing about end-of-life plans. What can I do, please help me and start from the beginning”?
The Mental Capacity Act  created the ADRT. It is legally enforceable in England and Wales. However, the ADRT must state the specific treatment to be refused and the circumstances at that time. This requirement is a serious stumbling block, but it can be addressed by considering the major issues patients may face at end of life. However, almost all levels of health care professionals face barriers to discuss making an ADRT for many different reasons: frightening the patient; anxiety within themselves; the sheer difficulty of starting the conversation and lack of time for continuing conversations. They feel they need training and support. Likewise, families and clients or patients need continuing conversations with trusted professionals to make their own ADRT. There is a long way to go before the social barriers about talking about dying and the right to refuse treatment are overcome.
This blog appeared in the bmj opinion 20 February 2019