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Wife refuses hospital treatment for husband with dementia

Case history

One of your partner's patients suffers from Alzheimer's and is devotedly cared for by his wife, with the assistance of carers. He suffers from gastro-oesophageal reflux, diabetes and has had a below-knee amputation for peripheral vascular disease that kept him in hospital for weeks.

This morning his wife called you because he is particularly confused, coughing, breathless and feverish – you suspect he has pneumonia. When you recommend hospital admission, his wife bursts into tears, and says she is never going to let him go back into hospital after the treatment he received last time. The partner who knows them well is on holiday.

Three GPs share their approach to a practice problem

Dr Alex Williams

'It would be nice to explore the reasons she is not keen on admission'

Although we are not told the patient's age, he has dementia and considerable co-morbidity so hospital admission may not be appropriate. It would be nice to explore, with tact and sensitivity, the reasons why she is not keen on further admissions.

Did something untoward happen the previous time in hospital? She clearly feels guilty about letting him go, so does she have unrealistic expectations? I am making an assumption that the patient is not capable of making decisions for himself, so does she have power of attorney?Our practice is lucky to have an excellent team of district nurses along with a community matron so I'm sure we could arrange a package of good care in the community. Depending on the severity of his dementia it may not be appropriate to prescribe any active treatment. However, a broad spectrum antibiotic such as amoxicillin in high dose is simple to administer and does have a liquid formulation. If the clinical situation deteriorates, hospital admission could again be offered (and declined). I would want to ensure she had consulted with other family members, such as sons and daughters. It may proceed to a terminal care issue, for which we now institute the Liverpool protocol or final care pathway, which documents the focus on comfort rather than intervention. Careful recording of all decisions and interactions with the family is important for the continuity of care and clear decision-making, as well as for medicolegal reasons. I would want to involve the family's own GP as soon as he returns and organise appropriate out-of-hours cover (we are able to post messages on the out-of-hours computer system).

Dr Zoe Rogers

'This highlights the difference between euthanasia and palliative care'

I have a great deal of sympathy for the patient's wife in this situation. It often seems to relatives, probably correctly, that their loved one is better off at home. But this chap does sound very unwell and is probably more likely to die if we treat him at home.

If, despite knowing this, she is still keen to keep him there, I would seriously consider this option. I will find out early on if there are other close relatives and make sure they agree with this course of action. If she were not happy for me to talk to the rest of the family, I would be more worried about the situation as it would suggest potential conflict about how to proceed. I think this case highlights the difference between euthanasia (the intentional killing by act or omission of a person whose life is felt not to be worth living) and palliative care (improving the quality of life through the prevention and relief of suffering).It may well be that by keeping this chap at home we are preventing suffering and this might be more important to him and his family than the possibility that keeping him at home might shorten his life. The district nurse and Macmillan nurse should be involved as soon as possible and I would discuss with them the decision to keep him at home. I would plan to treat him with appropriate antibiotics and his other medication if he was well enough to take it. If there were disagreements between family members or the primary care team about the decision, I would discuss it with my partners and possibly a defence organisation.

Dr Rodger Charlton

'There's no reason he can't be treated at home with regular review'

This is a difficult and not uncommon problem and your primary duty of care is to the patient. I am making the assumption that the patient is unable to make the decision himself about possible hospital admission.

There is no reason why he cannot be treated at home with regular review, assuming that intravenous treatment is not necessary for his infection or dehydration.If he is able to take a broad spectrum antibiotic by mouth and fluids he may make a quick response and his wife will be able to provide good care if she has appropriate advice with access to further help if it is required. Whatever the decision, this needs to be carefully communicated and negotiated with his wife. In some regions there is a rapid response nursing team available to care for such patients at home, supplying a level of nursing care similar to hospital. It is important to ensure that the patient's care and therefore his quality of life are optimal and in an ideal world people prefer to be treated at home. His wife believes she is up to this task and is negative following her previous experience of hospital care. It might be argued that the patient has a poor quality of life and in order to respect his wishes fully it is important to be aware of any advance directive or living will that was made before he developed Alzheimer's, and his wishes regarding aggressive medical treatment or palliation. The important decision to make clinically is whether a short stay in hospital with intensive treatment may restore the patient's former state of health prior to this infection and so enable an early discharge. If the GP is unsure of the diagnosis or the patient's glucose is high or he is ketotic,this may be a further reason for hospital admission.

What does this incident teach us?

Learning checklist

Can a relative refuse admission on behalf of a demented patient?

• Close relatives who are also the carers of patients are often in the best position to decide what is in the patient's best interests, but they have no legal powers unless supported by a living will made by the patient before he/she lost the ability to make his/her own decisions.• While her views can inform your decision, you have to decide what is in the best interests of the patient.• Exploring the carer's feelings and experiences may give insight into her underlying fears. It might also become apparent that caring for the patient at home is a viable alternative.• Other relatives might hold a different view and their feelings should also be considered if possible.

Arranging enhanced care at home

• Various levels of care are possible and all need to take account of both the patient's and carer's physical, psychological and social needs.• Involving the district nursing team and a social care assessment through social services is the first step. Night sitting services can also be arranged.• Intermediate care services differ depending upon area. They can provide parenteral fluids, IV antibiotics and nebulisers, and also take bloods, monitor oxygen saturation and report back to the GP. • Liaison with out-of-hours services is also important. Keeping patient-held records, such as district nurse records, accurate and up to date is vital.• Admission can still be considered later if the patient deteriorates.• Not having the benefit of a chest X-ray and other baseline investigations means the initial clinical assessment by you is very important. It may also be necessary to visit frequently as you will retain overall responsibility.

Enduring power of attorney

• If a patient starts to develop an illness that might render them incapable of managing their own affairs, they can appoint an attorney to manage them. This person can then apply to take over these responsibilities when it is felt that the patient has become incapable. This is usually arranged through a solicitor. But power of attorney would give the relative no additional power in this situation. It would only hand over control of their financial and social affairs.• If the patient is already incapable of managing his affairs, it is too late to apply for this arrangement. Instead, a Court of Protection can be applied for. This is much more complicated and it is the court's decision who will become the patient's representative.• Proposed changes to the Mental Health Act due to come into force later this year make a provision for power of attorney to include the issue of consent, so watch this space.

Terminal care in benign illness

• It can be very difficult to diagnose the terminal phase in non-malignant conditions, especially if you are not the patient's usual doctor, and because of this, palliative care is often very poor.• Placing the patient on the end-of-life pathway is a very positive step towards offering better terminal care.

Dr Richard Stokell is a GP and trainer in Birkenhead, Merseyside

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