Death with dignity: patient autonomy in the wake of Charlie Gard and Noel Conway

Death is relevant to us all, but end of life care – particularly for the terminally ill – is something few consider before they have to confront it. Two pressing cases have recently caught the world’s attention, both in London, and both challenging what it means to die with dignity. One was of an 11-month-old boy, Charlie Gard, who had a rare genetic condition – mitochondrial DNA depletion syndrome – which left him severely brain dead. The other is of Noel Conway, a 67-year-old man with a motor neuron disease that many experts believe leaves him with less than 12 months to live.

In the case of Charlie Gard, his parents wanted to pursue an experimental nucleoside bypass therapy, offered in the United States by a doctor at Columbia University. This relatively new therapy had limited evidence of proving effective on Charlie’s specific genetic mutation, but it appeared to be his only hope. For his parents, that tiny shred of hope was worth pursuing. They raised 1.7 million dollars to fly him to America and pay for his treatment, receiving support from figures as varied as Pope Francis and President Trump.

But, Great Ormond Street Hospital would not allow their son to be transferred. They believed the brain damage he accrued from multiple seizures throughout his stay at the hospital was too “catastrophic and irreversible.” Pursuing this experimental treatment “would be futile and prolong Charlie’s suffering,” the hospital said in a statement.

[Charlie Gard’s] parents wanted to pursue an experimental nucleoside bypass therapy. This relatively new therapy had limited evidence […] but it appeared to be his only hope. For his parents, that tiny shred of hope was worth pursuing.

A long litigation battle ensued between Great Ormond Street and Charlie’s parents, lasting more than six months while Charlie’s condition continued to decline. His parents eventually dropped drop the case, believing the experimental treatment would no longer be of benefit to their son.

Coming to grips with his inevitable death, all his parents wanted was for Charlie to die in their home. Yet this too required a legal battle, as it was difficult for the hospital to accommodate their wishes. The High Court released its ruling, deciding that Charlie would be withdrawn from Great Ormond Street Hospital and transferred to a children’s hospice, against the pleas of his parents. This left Connie Yates, Charlie’s mum, to ask the judge: “What if this was your child?”

The case of Charlie Gard was tragic, but it has also highlighted the need to discuss patient autonomy and death with dignity. On the NHS website, one can find their motto posted in bright orange letters: “Your health, your choices.” But how much choice is a parent or guardian truly granted when deciding on care for their child? According to the NHS, “if a parent refuses to give consent to a particular treatment”, or “if the people with parental responsibility disagree about what’s in the child’s best interests”, then the courts can make the decision.

This measure might have been taken in the past to guard against any extreme care decisions a parent might make, such as refusing vaccination on the basis of religion. But what about a case such as Charlie’s, where the parent’s desperately wanted to pursue experimental treatment, in the hopes of extending the life of their child, while the hospital does not agree?

Patient autonomy gets thorny here, and perhaps the best solution would have been to come to a compromise. Instead of going through a six-month litigation battle, while Charlie’s condition continued to deteriorate, they could have come up with a timetable – such as one month – in which to explore the treatment. If he were showing no signs of progress, then they could have taken him off the treatment and moved forward from there. Not only might that have benefited Charlie, but it could have provided his family with some form of closure.

Counter to Charlie’s case is that of Noel Conway, a 67-year-old man who seeks physician-assisted suicide to relieve him of his debilitating motor neuron disease. Mr Conway’s condition is painful and will only get worse as days progress. A humane death – one that is safe and comfortable for Mr Conway – would be in his home, with his family, using a lethal drug.

For some, this can be alarming, particularly because of the word that it brings to mind: suicide. Yet this is a poor way of framing the reality of Mr Conway’s situation. Unfortunately, he is in a lot of pain and as a terminally-ill patient, his death is inevitable. In such situations, for those who want to control the timing and manner of their death, I believe that they should have the option to do so. This is by no means an attempt to push all terminally-ill patients to pursue physician-assisted suicide. Rather, it is to provide the option.

If there is anything we should take away from the cases of Charlie Gard and Noel Conway, it is the importance of discussing patient autonomy and dignity in death.

Mr Conway will be pushing for this in court, potentially allowing mentally competent, terminally ill patients to decide how they want to end their life. Of course, such a policy would have to entail stringent eligibility criteria. It would need to be limited to terminally ill and mentally competent patients. It would require a waiting period to allow dying people to reflect on their decision. And, it would necessitate psychiatric evaluation, and assessment by a high court judge.

These stringent eligibility requirements would help combat worries of impulsive decision making, mental illness-influenced decision making, and coercion. Such a policy has also been shown to work in the US, such as in Oregon since 1997. It is humane and compassionate, allowing dignity in dying for the terminally ill.

Medicine exists to heal people, to relieve them of their pain, stress, and concern. If there is anything we should take away from the cases of Charlie Gard and Noel Conway, it is the importance of discussing patient autonomy and dignity in death. These discussions should not be limited to those associated with end of life care: they should concern all of us. Death is an inescapable experience, and for those who are dying, it is essential for us to do our part to give them choices, and to compromise, so as to ease the burden on them and their loved ones.