What does having a terminal diagnosis mean? As a doctor I use the term, but I know that predicting what happens after such a diagnosis is virtually impossible.
Currently I’m caring for a patient who might have been expected to live weeks, as she has sarcoma (a type of cancer of the bone and soft tissue) that had already spread throughout her body when it was discovered.
She’s had no treatment: the decision was that chemotherapy would only make her feel more ill. Yet two years post diagnosis she remains active and independent.
I have another patient, still alive years after three recurrences of widespread malignant melanoma (a lethal form of skin cancer) – again, defying all predictions.
When I’m giving advice to doctors training to become GPs, a constant theme is that none of us, however experienced, can ever predict when a patient will die and every doctor will have had patients who beat the odds.
A famous example was Abdelbaset al-Megrahi, the man convicted of the Lockerbie bombing who was diagnosed with aggressive prostate cancer in 2008 and released from prison on compassionate grounds in September 2009, as doctors thought he had just a few months to live.
He survived for almost three more years back home in Libya.
A ‘dying wish’, tied to a tree by a group of terminally ill people and bereaved relatives, in support of the Terminally Ill Adults (End of Life) Bill, in London’s Parliament Square
Underestimating how much time a patient has left may not sound as if it is a problem – but it is when it comes to discussions about assisted dying and whether this is something our society should allow. This will be subject to a free vote by MPs in the House of Commons on Friday, and last week the Palliative Care Minister, Stephen Kinnock, became the first minister to publicly confirm he would be voting in support of adopting the measure.
The question is over the prospect of helping those who wish to end their lives to do so. This is not euthanasia – i.e. giving someone the actual drug that kills them – but rather giving them the drugs to administer themselves (as is the case at Dignitas, the clinic in Switzerland that enables physician-assisted suicide).
My great concern as a GP who spent years as a hospice doctor is that any new law will follow the model that has been allowed for over 20 years in the state of Oregon in the US: if a patient is thought to have less than six months to live, on account of an incurable illness, doctors can provide them with life-ending medication, which the patient can then self-administer.
The problem is research shows doctors are frequently unable to accurately predict how long such patients will survive. One study in the BMJ in 2000, with 343 patients, found that doctors correctly predicted their life expectancy after entering a hospice in only 20 per cent of cases.
I am not against assisted dying, but against how it is being framed. I believe rather than focus on the life expectancy, we should look instead at the level of incapacity. I’m thinking of people living with a condition that renders life intolerable – which robs them of their ability to move or even swallow, for example, and yet there is no obvious point at which their distress might end.
Here I am thinking of conditions such as motor neurone disease, or strokes affecting both sides of the brain, rendering a patient completely immobile; and, yes, also those with an incurable illness and who are entering an obvious decline (which is, I think, a suitable description of ‘terminal’).
Earlier this year, a patient I’d treated for years was diagnosed with incurable cancer, but no exact time frame was put on how long he had. Within weeks he was bedridden and the only option was to reduce his pain. The support I offered was palliative care, a key part of which involves spending time with the patient listening to their concerns, helping them come to terms with their death; the regret, the sadness, even the anger. Some patients find solace and peace, but that is not universally the case. Despite the care I could give, my patient suffered.
Dr Martin Scurr says it is essential we avoid basing any law on assisted dying on a haphazard guess about how much time a patient has left
A strongly independent man, he was devastated to be so suddenly bedridden and unable even to lift a cup to take a drink. For over a month he became increasingly distressed. Time and again he pleaded with me to be given something to release him.
He died a while after I’d expected him to. If there is a new era of ‘assisted dying’, he might not have had the option of an assisted death because there wasn’t a specific time frame. And yet I believe this is precisely the type of scenario where assisted dying may have merit.
For ultimately, the reason for allowing – and helping – a person to end their life must be based on the intolerability of their condition, rather than an arbitrary guess about life expectancy.
It will require that a patient has normal cognitive function and a judgment will need to be made by the professionals based on a submission from the patient about the intolerability of their predicament.
It seems bizarre to me that we are given a wealth of choice in almost everything, apart from our death. But if there is to be a change in the law, it is essential we avoid basing it on a haphazard guess about how much time a patient might have left.
