Name: Mr K
Age and gender: 90-year-old male
Situation: He has been living in a nursing home since his general health deteriorated three years ago following a stroke. Eighteen months ago, he had another severe stroke which left him with a severely reduced level of consciousness and unable to swallow.
You have recently taken over Mr K's care from another GP in the practice.
Mr K is a 90-year-old man who has been living in a nursing home since his general health deteriorated three years ago following a stroke. Eighteen months ago, he had another severe haemorrhagic stroke which left him with a severely reduced level of consciousness and unable to swallow. He is unable to communicate verbally or obey commands. He is fully dependent for all care. He is bed-bound and doubly incontinent. Following hospital admission he was fitted with a percutaneous endoscopic gastrostomy (PEG tube) and discharged to the nursing home. You have recently taken over Mr K’s care from another GP in the practice.
You are called to assess and treat a minor chest infection, which prompts you to consider whether, in the event of future, more serious infections, it would be in Mr K’s best interests to receive antibiotics. As you start your review, it becomes clear from Mr K’s notes that the decision to fit Mr K with a PEG tube has not been reviewed since it was first fitted. As Mr K’s GP, you have responsibility for decision-making.
Where CANH is provided, it should be reviewed a standard part of future care planning. When discussions take place and decisions are made about other interventions – e.g. antibiotics or CPR – CANH should also feature in the discussion. (Appendix 1).
Discussions about best interests should have started long before this point – ideally when Mr K was in hospital before the PEG was fitted. As Mr K is being cared for in the community, the responsibility for decision-making now falls to his GP or, if appropriate, another GP in the practice who has the most experience of these decisions. (Section 2.3)
It is absolutely crucial that someone takes responsibility for the decision so that CANH is not provided "by default". To allow this to happen is not in the interests of patients, or in keeping with health professionals’ obligations under the Mental Capacity Act. (Section 2.7)
Where patients are being cared for in the community (either in a nursing/care home or at home), the decision-maker will be the patient’s GP – or the GP in the practice who has the most experience of these decisions. (Section 2.3)
With little prior experience of these decisions, you feel overwhelmed at the prospect of the decision that needs to be made. As Mr K is being cared for with NHS continuing care funding, you contact your Clinical Commissioning Group (CCG) for advice on how to proceed. They arrange to put you in touch with the case manager, who is able to offer more support.
Although you might come across such cases quite rarely in primary care, it is important that you know how to address them when you do. You should check whether there is additional support available to you – either a named individual, identified by your CCG or Health Board or, if the patient is under the care of a secondary care team, a secondary care clinician who can provide input. (Section 2.3)
Going back through the medical notes, you notice that he had appointed his wife as a health and welfare attorney, but that she had died five years previously. When you speak to the care home manager about who might know more about Mr K, she tells you that his last surviving relative is a daughter who lives abroad and who sees him once a year but that he was particularly close to a couple of the other residents and an old neighbour who visits him regularly.
Having assessed that the patient lacks capacity, it is important to establish who has decision-making responsibility. As Mr K’s wife has died, the last power of attorney is no longer in place. (Section 2.3)
The Mental Capacity Act 2005 states that “anyone engaged in caring for the patient or interested in his or her welfare” should be consulted as part of a best interests assessment. This category can be quite broad. It is important to identify relevant people who should be consulted – bearing in mind that blood relatives might not always have the most relevant information. It can be helpful to ask who visits the patient most regularly, or to check with family members or carers if there is anyone else you should speak to. (Appendix 1)
Where patients have been receiving CANH for a number of years, it can be difficult for family members and others close to them to start to consider whether it should continue. It is important that you are able to explain why the question is being asked now, and be clear that the aim is to make sure that the patient receives the treatment that is right for them. The BMA and RCP have a leaflet that can be given to families and friends explaining this information and their role in the decision-making process, which you can find here.
When you speak to Mr K’s daughter by phone to explain Mr K’s condition she is surprised and upset to hear you raise the question of whether CANH should be continued. She says that it is a lot of information for her to take in, and she feels overwhelmed by the prospect of being involved in this decision. She does mention, however, that she thinks that her father had made an advance decision refusing treatment (ADRT) after her mother’s death and that she felt it was very important that his views were respected.
It can difficult for those close to the patient to articulate all of the information needed in a short space of time. If it is helpful, family members can write a letter or a written statement to be submitted as part of the patient’s best interests assessment. (Appendix 1)
If family members decide that they do not want to be involved in the decision-making process, that is a choice they are allowed to make and you should make a note of this in the patient’s notes. Similarly, if someone appointed as an LPA cannot face making the decision on behalf of the patient and wish to "opt out", the decision must proceed on the basis of best interests. If all those close to the patient opt out of being involved, you will need to appoint an independent mental capacity advocate (IMCA) to represent the patient’s voice. (Section 2.3)
When you go through Mr K’s paperwork at the nursing home you realise that there is indeed an ADRT that meets the criteria for validity – but it only addresses his wishes about resuscitation and ventilation in the event of a cardiac or respiratory arrest and does not specifically address the issue of clinically-assisted nutrition and hydration. Nevertheless, it does provide information about Mr K’s views and what was important to him, and sets out the type of circumstances in which he would not want ventilation provided to prolong his life.
If the patient has made a valid and applicable advance decision to refuse treatment (ADRT), then that decision must be respected. An ADRT is only valid if it clearly applies to the treatment to be refused in the circumstances that have arisen. Even if an ADRT is not legally binding, it must be considered as part of the best interests assessment, as it may provide a clear indication of the patient’s wishes, feelings, and beliefs about their care at the end of life, all of which must be considered in the best interests assessment. (Section 2.3)
Mr K’s daughter has been listed as a “proxy” on the ADRT, and the care home manager asks whether this means that his daughter does have decision-making powers. You explain that she would only have decision-making powers if she had been appointed as a health and welfare attorney with the appropriate powers. If we were a court-appointed deputy, she could consent to, but not refuse, CANH. The decision must proceed on the basis of best interests.
Although many ADRTs ask people to name someone as a “proxy” this does not mean that that person has been granted decision-making powers. The only way to grant such powers is by appointing someone as a health and welfare attorney, or if the Court of Protection appoints someone as a deputy. Anyone named by the patient as a proxy in this way should be considered as someone "named by the person to be consulted on the matter in question" under s.7 of the Mental Capacity Act and they must be consulted as part of the best interests assessment.
When you speak with the other residents, and the neighbour, that the care home manager had identified, they tell you that Mr K was a born entertainer who loved playing the piano and getting everyone to sing along with him, and that he loved to do crosswords, and to argue with other residents about stories in the newspaper. They say that he regularly attended church, but that his attendance had stopped after he became very frail after his first stroke; he was always very particular about his appearance and was embarrassed at being seen in a wheelchair.
The law is clear that “best interests” applies in the widest sense: it covers not just medical, but social and psychological best interests. This means that it is important for you to understand who the patient is as person and what is important to them. This can mean finding out about what the patient was like before becoming ill; their interests; likes and dislikes; and personality. This information can help indicate what view they would take of their current situation.
You should accumulate enough information to form a clear view as to what the patient would have wanted for him or herself, if they had the capacity to make that decision. (Appendix 1)
Having assessed all of the information you have collected, you reach the conclusion that it would not be in Mr K’s best interests for him to continue to have the PEG tube in place. You share this view, and the reasons for it, with Mr K’s daughter and the other people who have contributed information and they all agree this is the right decision.
You contact your CCG, which puts you in touch with a local stroke physician, who is able to provide a second opinion. The stroke physician examines the patient, the medical notes and the records of the best interests assessment undertaken, and reaches the same conclusion.
GMC guidance requires a second opinion to be sought when a decision is made not to start, or to withdraw, CANH in a patient who is not expected to die within hours or days. The level and type of expertise required, and the independence of the clinician, will depend on the individual circumstances. If you are working in the community, your CCG/Health Board should help you identify, and fund, an appropriate second opinion. (Section 2.8)
When you discuss this with the care home manager, she becomes quite distressed and explains that some of the staff who have cared for him for some time are also upset by this decision. You contact the local specialist palliative care team to advise on the end-of-life care plan and to provide support to the staff in the nursing home. Through this support and further discussion, it becomes clear there is agreement that it is no longer in Mr K's best interests to continue to receive CANH.
The withdrawal of CANH does not mean the withdrawal of all other care or symptom relief, which will continue to be provided. It can be helpful to explain this to staff or family members who are concerned about the withdrawal process.
A detailed end-of-life care plan for the process of withdrawal and end-of-life care should be prepared, seeking the input of specialist palliative care teams where necessary. This should detail:
- where end-of-life care will be provided;
- who will be responsible for it; and
- how pain and distress will be managed appropriately, and the patient’s dignity maintained.
Consideration should be given to how family members and friends will be supported after CANH is withdrawn, for example, by signposting to relevant counselling, bereavement or support services. A decision to withdraw can also be challenging for healthcare staff, particularly where they have been caring for a patient for some time. You should consider what support is available for you and colleagues, either formally or informally. (Section 2.10)