Name: Mr F
Age and gender: 79-year-old male
Situation: Admitted to hospital with bradycardia secondary to electrolyte disturbance due to acute diarrhoeal illness and aspiration pneumonia. Diagnosed with Parkinson's disease six years prior.
Mr F is a 79-year-old man who was admitted to hospital with bradycardia, secondary to electrolyte disturbance due to acute diarrhoeal illness, and aspiration pneumonia. He was diagnosed with Parkinson’s disease six years ago but is stable. He does not speak much English but attends hospital with his son who does. He lives at home with his son who manages all of his domestic tasks. He is, however, independently mobile, requires minimal assistance for personal tasks and is reportedly “OK” cognitively.
He is initially unwell, but stable, with hypoactive delirium. After being treated for infection and electrolyte imbalance there is some improvement, but the speech and language therapist is of the view that it is not safe for him to swallow. An interim nasogastric tube (NGT) for feeding and medications is started on a trial basis. Following early improvement in arousal, his swallowing remains unsafe: he has severe oropharyngeal dysphagia with grade 7 swallowing impairment, and the clinical conclusion is that there is no potential for recovery sufficient to allow safe swallowing. The speech and language therapist and the dietician recommend long-term enteral feeding and nil by mouth.
Where there is doubt or uncertainty about whether CANH is in a patient’s best interests, it should be started on a “time-limited basis”, for example, to allow more time for the patient’s condition to be assessed; for the patient’s likely recovery to become clearer; or to allow a fuller discussion of best interests to take place.
The fact that CANH is started does not mean that it should be continued indefinitely – and CANH should never be withheld simply because it is considered easier than making a decision to later withdraw. (Section 2.5).
Mr F’s son and daughter describe an acute change in cognition since his admission to hospital. You carry out a capacity assessment with an interpreter, along with a staff nurse who speaks his language, and his son and daughter. It is clear that he is unable to understand, use or weigh information about feeding and demonstrates inconsistent responses. The overall conclusion is that he lacks capacity to make a decision about long-term enteral feeding. His son explains that Mr F hated to contemplate his deterioration in health, and that despite the family's best efforts, Mr F never made an advance decision to refuse treatment (ADRT) or appoint anyone as a health and welfare attorney. His son does make you aware, however, that after his diagnosis of Parkinson’s, he had carried out some advance care planning with his GP.
Having assessed that a patient lacks capacity, and checking that there is no valid and applicable advance decision to refuse treatment (ADRT) or a health and welfare attorney, the decision about long-term enteral feeding is to be made by you – as the clinician in overall charge of his care – on the basis of best interests. The information in Mr F’s advance care plan may assist with this. (Section 2.3).
You explain your clinical recommendation – that a radiologically inserted gastrostomy (RIG), with oral trials for comfort, is started – to his son and daughter. Both of them say no: they feel they can manage his swallowing at home as they have in the past. They both mention that their mother, Mr F’s wife, died two years ago following a very distressing period of tube feeding towards the end of her life and that they do not want to go through the same thing again. When asked how Mr F felt about that, they say that he found it difficult, but that they never heard him express a view about whether it was something he would want for himself or not. Mr F does not appear to object to a tube being inserted in the course of discussions with his family.
The detail about Mr F’s wife is pertinent to your consideration of his best interests, but only if it is his view and not that of his son and daughter. The aim of a best interests assessment is to consider matters from the patient’s point of view and arrive at a decision that is right for that individual – not what is right or convenient for their family and carers, or what a “reasonable” person would want in that situation. It is important that you clarify whose view it is that is being expressed by the family. (Section 2.6 and Appendix One)
The fact that Mr F is able to express some views is really important. Even where a patient lacks capacity, they may still be able to express themselves through certain behaviours or responses to external stimuli - either positive or negative. Every effort should be made to enable this (e.g. by involving an interpreter and the speech and language therapist). Although not determinative of the decision, information collected in this way should be fed into your best interests assessment. (Section 2.6 and Appendix One)
You arrange to meet again with them the following day, with some other members of the care team, including the speech and language therapist, a radiologist, and the dietician. You explain that a decision needs to be made on the basis of Mr F’s best interests as to whether he should receive a RIG, but that you also need to explore other ceilings of treatment.
In addition to consulting with Mr F’s family members, it is important that you hear from other members of the care team about their views on Mr F’s care and his best interests. (Section 2.3) It can also be helpful for the family to hear from a wide range of members of the care team, while being careful not to make them feel overwhelmed or intimidated by the number of clinical staff involved in the discussion. (Appendix One)
It is important to note that decisions about CANH will rarely be made in isolation from other decisions about ceilings of treatment or intervention, such as whether antibiotics should be provided if the patient develops an infection, or a decision about CPR. You should be clear with family members from the outset about what decisions are required, and why.
You explore Mr F’s current experiences with his son and daughter, noting that although he is no longer able to take food orally, he remains mobile, needs very little support on the ward, and appears to get enjoyment from spending time with his family, particularly when his grandchildren visit.
You explain your clinical concerns, and the options available, in a way that Mr F’s family can understand. When providing clinical information, it is important to provide realistic information about the patient’s current experiences (either positive or negative) and what the future holds for them – focusing, in particular, on specific activities and interests that are important to the patient, and the extent to which they will be able to participate in them. (Appendix One)
Mr F’s advance care planning was carried out a number of years ago, and does not expressly address the scenario of having a RIG. It is clear, however, that what is most important to him is being able to stay at home, and being pain-free.
His children describe Mr F as a family man, and that his children and grandchildren were the most important thing to him. They tell you that he worked long hours as a car mechanic to afford to take his children abroad to visit family members and that he loves seeing family members living abroad on Skype, even when unable to fully communicate with them. One of the nurses who has looked after Mr F during previous hospital stays mentions that he frequently wanted to show her and the care assistants pictures of his grandchildren and was anxious to be discharged so that he could be at home and have them to stay with him.
The clinical information is just one part of the story and it is important that you find out a patient’s “feelings and wishes, beliefs and values”, and anything else which shows what might be important to the patient, and therefore how they might view their current situation.
This includes considering the person’s past and present wishes and feelings, in particular, any written statements – such as his advance care plan. It also involves hearing from “anyone engaged in caring for the person, or interested in his welfare” – e.g. family members, friends, and members of the care team. (Appendix One)
You explain that without a tube, prognosis is extremely poor and there is a high risk of repeated aspiration. With a tube, you explain that you believe he will be able to live for a number of years, and still be able to enjoy some of the things he currently does – like spending time around his family and being able to be cared for at home with some additional assistance and support. You also explain some of the risks and complications associated with a RIG, and how these could be managed.
All of the information and evidence provided about the patient’s past and present wishes, feelings, beliefs and values, including the balance of current positive and negative experiences, should be carefully assessed in relation to the most realistic prognostic evidence available. It may be helpful to use a “balance sheet approach” to weigh the benefits and risks of each option and to ensure that all relevant factors have been carefully considered. (Appendix One)
Mr F’s son and daughter repeat the negative experiences they had with their mother when she was receiving tube feeding. You are able to explore these in more detail and come to understand that there were a number of other distressing symptoms, such as pain and agitation, which were not managed well. You are able to explain how these could be managed with Mr F. You also offer to arrange for a colleague to provide a second opinion.
GMC guidance states that a second clinical opinion should be sought where it is proposed, in the patient’s best interests, to stop or not start CANH and the patient is not within hours or days of death. (Section 2.8)
It is not a requirement to seek a second opinion when the option being proposed is to start or continue CANH. However, it can be helpful, where there is any doubt or disagreement about the best interests assessment, to ensure that the “right” decision is being made for the patient.
His family ask for a bit more time to consider the different options and to talk to other family members who might know more about Mr F’s wishes, feelings, beliefs and values and who could contribute. You arrange time for a follow-up discussion at the end of the week. During this discussion you reach an agreement with the family that, in light of Mr F's previously expressed wishes and feelings, and considerations of the risks and benefits of a RIG, Mr F would have decided to have a RIG tube fitted. You set a review date for six months’ time and record this in Mr F’s medical notes.
A discussion and a decision about what is in the patient’s best interests is not a one-off event: in some cases, it may continue over a period of time and involve a number of ongoing formal and informal discussions.
Decisions that it is in the patient’s best interests to receive CANH must be reviewed on a regular basis to ensure that this continues to be the case. Decisions should be reviewed every 6 months (or 12 months if the patient is in a more stable condition) and the responsibility for doing so rests with the clinician with overall responsibility for the patient’s care. (Section 2.7)
The extensiveness of the review will depend on how much has changed since the original decision was made – for example, the clinical situation has changed significantly, or new information comes to light that might affect the original decision.