Withdrawing ventilation support at the request of the patient: the ethical, moral and legal issues

Motor neurone disease (MND) can cause weakness in the chest muscles involved in breathing. This leads to shortness of breath and symptoms including disturbed sleep and headaches. Ventilation support allows a person to breathe more efficiently and can also extend survival.

The MND Association has funded research into respiratory management and ventilation support for people living with MND.

A study looking at withdrawing ventilation support at the request of a patient with MND has recently been published in the journal BMJ Supportive and Palliative Care. It was led by Professor Christina Faull, from LOROS – the Leicestershire and Rutland Hospice – in conjunction with the University Hospital of Leicester, and has been part-funded by the Association.

Healthcare studies are an important part of medical research. Their purpose is to try and solve issues surrounding treatment and management, to improve the delivery of care to patients, and improve support for their families. This type of research also helps provide evidence that a treatment is helpful and beneficial for the clinical commissioners, who, in turn, provide funding for the treatment and support.

Ventilation support  

The main treatment to help people living with MND breathe is non-invasive ventilation (NIV), though it is not suitable for everyone.

NIV involves a machine that supports breathing by increasing the amount of air that can be breathed in. This is done through a mask over the nose (or nose and mouth).

NIV is often first used during the night, in response to difficulties in sleeping associated with breathing. However, as MND progresses, patients can become more reliant on NIV and may also use it during the daytime.

Patients may also receive ventilation support via invasive ventilation tracheostomy – this is where a tube is inserted into the windpipe through the neck, which is attached to a machine that can help with breathing.

More information on ventilation support can be found in Care Information Sheet 8B.

Withdrawal of ventilation

Someone currently using ventilation support can request to withdraw it even though life may be shortened once this treatment is removed. There may come a time when a person with MND feels that breathing support is no longer helping or it has become a burden.

People who have MND and are receiving ventilation support should know that withdrawal is an option available to them. When discussing this request with their doctor they should get the help and support they need to make their decision.

Withdrawing ventilation support has been a difficult topic for both health-care professionals and people with MND to discuss, over fears that withdrawing treatment may be seen as assisting death. It is important to stress that withdrawing ventilation support is not legally classified as assisted dying.

Study findings

Interviews with 24 doctors with a range of specialities shared their experiences of withdrawing ventilation support at the request of a patient with MND.

The interviews revealed that doctors had concerns about withdrawing ventilation support from their patients because this may be seen as assisting the death of their patient (and therefore breaking the law). There were also concerns over communication difficulties when talking to a person with MND about withdrawing support and uncertainties over why the request to withdraw support was being made.

Prof Christina Faull, LOROS

Prof Christina Faull, LOROS

Professor Faull, lead researcher on this study said “Many doctors had experienced negative reactions from other healthcare professionals when these colleagues were unclear of the distinction between alleviation of symptoms, withdrawal of treatment and assisted death.

The research we carried out found that guidance is needed for professionals who support a patient with MND who wishes to withdraw from ventilation. Open discussion of the ethical challenges is needed as well as education and support for professionals.”

Professor Faull is currently involved in developing guidance for healthcare professionals on the withdrawal of assisted ventilation at the request of a patient with MND. This is in conjunction with the Association for Palliative Medicine, with support from the MND Association and is expected to be published in autumn 2015.

More information:

Research paper: Phelps, K et al. BMJ Supportive and Palliative Care Published Online First (11 Sept 2015) doi: 10.1136/bmjspcare-2014-000826

Care information sheets 8A Support for breathing problems, 8B Ventilation for motor neurone disease, and 8C NICE guidelines for non-invasive ventilation (NIV)

End of Life Guide

Association for Palliative Medicine Position Statement: Withdrawal of ventilatory support at the request of an adult patient with neurological or neuro-muscular disease.

This blog has also been posted on ReCCoB – the MND Association’s peer-to-peer blog for MND researchers, and health and social care professionals.

If you would like to discuss any of the issues raised in this blog post please contact MND Connect on 03457 626262, or emailing mndconnect@mndassociation.org.

2 thoughts on “Withdrawing ventilation support at the request of the patient: the ethical, moral and legal issues

  1. Very sad that doctors are concerned about the withdrawl of ventilatory support being interpreted as ‘assisted suicide’. When I worked on intensive care as a Staff Nurse some 30 odd years ago, ventilators were turned off after consultation with relatives, when the patient had no hope of recovery. We are now talking about patients giving consent for THEIR OWN ventilatory support being withdrawn and doctors are worried.
    In my humble opinion the medical profession needs to start to put the patient’s needs and wishes first

    • Dear Alison,

      Thank you for your comment.

      This research we part-funded identified many things that should be improved for patients and families, one of which (reported in this paper) was a need to reassure patients, families, colleagues and others about the legality and ethics of withdrawal of ventilation support. Guidance on the best way to support the patient’s wishes is clearly needed by the range of professionals involved in a patient’s care, including clarity that withdrawing treatment is not assisting their patient to die. The guidance very clearly supports the right of the patient to make this decision and its very intention is to make sure people do have a real choice.
      A patient asking for withdrawal of NIV, for example, is a relatively rare occurrence and not something a doctor may have encountered in their career. This is where the guidance will help them, their patient and the patient’s family.

      Kind regards,
      Sara Bolton, MND Association UK

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