PI Brief Update

A Balanced Approach to Death and Dying - Dr Mark Burgin

30/01/25. Dr Mark Burgin explains that suffering is an unavoidable part of the human condition and detaining dying people may be a form of clinical negligence.

There have been a series of cases where hospitals have refused to allow terminally children discharge themselves. Whilst it is understandable that healthcare staff will wish to protect these children there was an unwelcome twist. In a recent case it was the near adult child who was asking to leave the hospital. This has led to medical experts questioning some of the current principles.

The actual rules are highly complex and are based upon the child having special needs which are at the centre of the process. The court will put these needs above those of the parents and some argue common sense. These arguments are largely unhelpful to this discussion as they are about balancing rights and like many ethical discussions do not have a single right answer.

Courts have generally followed the healthcare professional’s advice about medical care. The rules are designed to cover situations such as a parent refusing treatment for their child. They are not designed for dying children who do not have any real treatment options. The arguments in these cases have revolved around what is treatment, is the detention appropriate and what other options are there available?

What is treatment?

Many seriously ill children require life supporting treatment prevent immediate death or the risk of death. A child immediately post-surgery or chemotherapy is very vulnerable and although may be stable for a short time will not be for long. Removal of the child from hospital at that time would jeopardise their chance of recovery and cause a serious risk of death.

The child might not be having any active treatment at the time they are removed but the courts have agreed that they are undergoing a course of treatment. Even if the child is allowed home on leave there is a reasonable expectation that they will return to continue the treatment. The result of this analysis is that regular monitoring of the observations, having an unused cannula and even regular Paracetamol have all been considered as active treatment.

For the dying child this ‘active treatment’ may include palliative treatment and pain control. There may be regular visits of carers and even the parent’s own cares can be considered as ongoing treatment. This treatment is then used to deny the child freedom to decide where they die or if they want treatment from another provider.

The number of completed DoLS (deprivation of Liberty Safeguards) applications has been increasing by an average of 10% each year. This suggests that the elderly are being detained at a far greater rate than other groups and that this increasing. Not all elderly people who are detained will be dying but the increases should make lawyers worry about whether all these detentions are appropriate.

Appropriate detention?

Dying and choice of death is not a medical issue and any treatments that can be offered are solely for symptomatic reasons. A person who is dying should not be detained unless they have lost capacity for even simple things (delirium, severe dementia or psychosis). These rare individuals apart, the dying person can and should make their decisions themselves.

Any arguments about ‘danger to themselves’ must be considered in the context of their imminent death. A person with terminal cancer who decides to smoke is unable to do so because of hospital rules is not likely to cause any harm to themselves. They already have cancer and are unlikely to develop any other problems in their remaining few weeks. Even if smoking causes an increased risk of chest infection then this is a matter for them, not their doctors.

The balance for a patient with a year or two left but incurable disease may favour some detention but even then it should be as least restrictive as possible. A clear difference should be made between a person suffering distress because they cannot have as good pain control out of hospital and threats to their life. As hospitals cannot completely prevent pain it should be a rare situation when a patient should be detained because they will suffer pain.

Other options

Doctors can overstate the benefits of hospital-based treatments and undervalue community-based support. This may be due to lack of experience of, for instance, hospice and Cradle to Grave Care. They can ask colleagues for support and advice as to what is available locally. Often these options have been ignored or forgotten particularly if the specialist does not have palliative care expertise.

Death changes people’s priorities and the person may want to visit an important location one last time before they die. These social needs are as important (or more important) than the medical care that they are receiving. There are four options to support any dying person – love, pride, hope and symptom control. Only the last directly involves the doctors.

Lawyers should be aware that the resistance they face when challenging medical decisions to detain people is often emotional rather than logical. The staff are anxious that something will go wrong, that they will receive a complaint and are often struggling with their own feelings of loss. Doctors are often the last to recognise that their patient’s life is coming to an end and can refuse to give up.

Conclusions

Mental Health Law is often used to detain the dying but sometimes a clinical negligence lawyer will become involved. The relatives may be concerned that there were missed opportunities and that the hospital is refusing to permit another hospital from offering treatment. Making a clinical negligence case against the first hospital can be a critical step in allowing the patient to be released.

The clinical negligence lawyer can offer a wealth of experience to these cases. They can help the Mental Health Lawyers argue that the treatment offered is futile and causing more distress than allowing them to go home. They can challenge the medical basis of the detention but also provide alternative approaches that can act as the basis of a negotiation.

As a disability analyst I am asked to assess the person’s life expectancy, capacity, functional restrictions and reasonable adjustments. The report can help clarify the risks that are present and the options available to manage any disabilities. This medical voice can help the staff come to terms with the person dying. Having a balanced approach to death and dying can often allow prompt agreement to an acceptable solution.

Doctor Mark Burgin, BM BCh (oxon) MRCGP is a Disability Analyst and is on the General Practitioner Specialist Register.

Dr. Burgin can be contacted on This email address is being protected from spambots. You need JavaScript enabled to view it. and 0845 331 3304 website drmarkburgin.co.uk

This is part of a series of articles by Dr. Mark Burgin. The opinions expressed in this article are the author's own, not those of Law Brief Publishing Ltd, and are not necessarily commensurate with general legal or medico-legal expert consensus of opinion and/or literature. Any medical content is not exhaustive but at a level for the non-medical reader to understand.

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