Abstract
Dear Editor:
Sean Morrison feels that advance care planning (ACP) has no clear role in the achievement of goal-concordant care for patients at the end of life. 1 The various studies, including numerous systematic reviews, he quotes are equivocal or show modest effects, but there may be a clearer role when disease-specific and customized plans are made, considering very real possible options in care.
The care of people with progressive neurological disease is often complex and patients may face loss of capacity to make decisions or loss of communication as the disease progresses. There are often possible interventions that may be considered as the disease progresses, but the patient may have lost communication and/or cognitive ability to make the decision when this is necessary. However, clear ACP can enable the patient's voice to be heard when decisions are to be made, even if they are not able to make the decision themselves. It is very important to have the discussions about future care earlier in the disease progression so they are clearly known later.
For instance, a person with amyotrophic lateral sclerosis (ALS) is likely to develop increasing issues in swallowing and in respiratory function. Thus, there will be decisions to be made regarding possible feeding, including the insertion of a gastrostomy, or the support of ventilation, using noninvasive ventilation (NIV) or even invasive ventilation with a tracheostomy. It has been suggested that discussions about future care should be undertaken after the diagnosis has been communicated and reiterated throughout the disease progression and particularly when new interventions, such as gastrostomy or NIV are being considered. 2 These discussions may not be easy but are necessary, as if we wait until the patient develops respiratory failure and is admitted to hospital in an emergency and decisions may be taken that are regretted later. 3
There are now disease-specific ALS advance care plans 4 and there is evidence that the early approach to diagnosis and early discussion can facilitate ACP. Seeber et al. in The Netherlands found that a staged approach at diagnosis was helpful, with an initial appointment to discuss the diagnosis and a further appointment two weeks later to initiate discussions about future management and ACP. 5 This was appreciated by patients and families and future planning, including completion of a euthanasia statement, was discussed at this stage. The disease-specific plan does allow discussion of the key issues, often respiratory support in ALS, between patient, family, and professionals in a more detailed and relaxed way, before a crisis. 4
The specificity of a disease-related ACP tool helps in discussion and for someone who may lose capacity, and in fact it may be the likely outcome, such as in dementia, discussion is important. This will need training of professional teams and more discussion within patient groups. We should not throw the baby out with the bathwater and stop all ACP—disease-specific ACP may be clearer, reasonably simple, and right!