More information about text formats
Dr Anthony-Pillai is wrong to argue that the BMA and Royal College of Physicians’ guidance on decisions about clinically-assisted nutrition and hydration (CANH) is dangerous in overlooking the symptomatic benefit that CANH can provide.
Our guidance, which was developed over a period of 18 months, in conjunction with a range of medical, legal, and ethical experts, is professional guidance, setting out the process that needs to be followed in order to comply with the law and good practice. We are clear that the guidance should be read in conjunction with the most up-to-date clinical guidelines when reaching a decision, and that any significant divergence from established practice must be justified. It is the clinical guidance which is the most appropriate home for discussion on assessing and responding to symptomatic distress. For patients who are in a prolonged disorder of consciousness (PDOC), this will be the clinical guidelines on PDOC from the Royal College of Physicians – who were the joint authors of our guidance. (These guidelines are currently under review by the RCP’s PDOC guideline development group following recent changes to the law. The updated version is expected to be published in early 2020.)
We do not, as Dr Anthony-Pillai suggests, only “implicitly acknowledge” that CANH can provide symptomatic benefit. We explicitly state at the outset, in determining the scope of the guidance, that “clinical benefit” encapsulates not just prolonging some...
We do not, as Dr Anthony-Pillai suggests, only “implicitly acknowledge” that CANH can provide symptomatic benefit. We explicitly state at the outset, in determining the scope of the guidance, that “clinical benefit” encapsulates not just prolonging someone’s life, but also the provision of symptomatic relief (page 16 of the guidance).
With regard to how clinical information is to be used and weighed as part of the best interests decision, we are clear that all relevant clinical information should be taken into consideration. This will include information about the patient’s current condition, the quality of his or her life (from his or her perspective), and the patient’s experience of pain and distress and how it is being managed –including consideration of the symptomatic relief CANH is providing.
All of this information should be considered alongside information about the patient’s wishes, feelings, beliefs and values – past and present – to reach a decision about what is in the patient’s best interests. When the discussion is about the withdrawal of CANH, all of that information must be sufficiently robust to rebut the strong presumption that it will be in the patient’s best interests to prolong his or her life. At all times, the decision must be focused on what is right for that individual patient.
Further, an important requirement of the guidelines is that, if a decision is made to withdraw CANH, an appropriate palliative care plan must be in place to manage any symptoms that might arise. The RCP guidelines provide specific advice and palliative care protocols to ensure optimal palliative care in this situation.
The real danger to patients lies with doctors acting in a way that is not in the best interests of the patient – whether that is by continuing treatment for too long, and forcing them to continue a life that they would not want, or by withholding or withdrawing treatment too soon and depriving patients of the opportunity to live a life they would value. Our guidance aims to ensure that does not happen.