Switching off Life Support

This was a recurrent theme in our interviews, so it is useful to know the laws and ethical considerations behind this. We have also written a webpage on two case studies involving this matter: Charlie Gard and Alfie Evans. When withdrawing life sustaining treatment, there are three factors a doctor must consider:

Defintions

Advanced Directive/Decision: This is a statement written by a patient discussing medical treatments they would not want in the future if they lack capacity to make a decision. This includes life sustaining treatment such as ventilation, CPR and antibiotics.

Health and Welfare Lasting Power of Attorney: This is a form filled out by a person which gives another individual the ability to make medical decisions on their behalf, should they be unable to make their own decision in the future. For example, if you are diagnosed with dementia.

Autonomy

In the case of withdrawing life support, the patient is often non-responsive (in a coma/vegetive state) and thus rarely able to consent. In this case, 1) If the patient has written an advance directive, this is first considered 2) Family members which have power of medical attorney are conversed with or 3) If the patient has neither of these, the choice falls upon the parents or family of the patient. If the doctor and parents disagree in the case of a child, as detailed in the 1987 Children's Act:

“Where a child is at risk of harm, the state can and should intervene”

This allows doctors to take a case to court if they disagree with the parents decision (e.g if the parents want the child to live, whereas the doctor may believe this is prolonging suffering, a court case will decide the final action). If both the doctor and the patient/family of the patient agree, as of 2018, the UK Supreme Court ruled that a court case isn't necessary, and life support can be switched off

Distributive Justice

Although a economic standpoint isn’t as important as ethics in these scenarios, it still must be considered. The National Institute for Health and Care Excellence (NICE) recommends treatments of less than £30,000 per Quality Adjusted Life Year (QALY).

Calculating QALYs: If a treatment that costs £100,000 has a 20% chance of success to extend life for 40 years and each year is valued at roughly 0.15 QALYs

  • 40 years × 0.20 (chance of success) × 0.15 (QALY) = 1.2 QALYs

  • Therefore cost per QALY: 100,000/1.2 = £83,333

This would mean the treatment costs £83,000 per QALY and therefore is unlikely to be offered under the NHS.

Why £30,000 Per QALY?

Distributive justice is an important consideration in public healthcare since the NHS has a limited fund. By spending hundred of thousands of pound on one patient, it would be taking funds aways from treating numerous other patients. If we apply utilitarian ethics, we should help the most amount of people possible and hence £30,000 has been found the optimum to support the maximum amount of people.

Note: This argument is insignificant for private healthcare.

The Patients Best Interests

Often this is the deciding factor in these scenarios. In both the Charlie Gard and Alfie Evans case, this was used in court as the reason to switch off life support (”To let Alfie rest.”/ “Charlie could be suffering pain.”). However, some argue if death can ever be in the patient’s best interest. If a treatment only has a 10% chance of success, that will save 1 person out of 10. Some state the illusion of money should never supersede the reality of a life. Others argue that the extremely low quality of life after some incidents (e.g paralysis, surgery for cancer with a high likelihood of reoccurrence etc.) would lead to more suffering than death.

The Charlie Gard Case brought two other suggestions for who should be considered when turning off life support:

  • The parents intervention of choice - if it is privately funded and does’t harm the child, the treatment should be allowed.

  • Future patients with the same disease - no patient with Encephalomyopathic Mitochondrial DNA Depletion Syndrome has been treated with Nucleotide Bypass Therapy. Therefore by enabling the treatment for Charlie, this could help future patients and give the family hope.

Currently, only the patient’s best interests are considered and neither of these other factors can be used in court.