What does it mean to have a terminal diagnosis? As a doctor I use the term, but I know that predicting what will happen after a diagnosis like this is practically impossible.
I am currently caring for a patient who was expected to live for weeks, as she has sarcoma (a type of bone and soft tissue cancer) that had already spread throughout her body when it was discovered.
She has not received any treatment: the decision was that chemotherapy would only make her sicker. However, two years after diagnosis, she is still active and independent.
I have another patient, who is still alive years after three recurrences of widespread malignant melanoma (a lethal form of skin cancer), again defying all predictions.
When I give advice to doctors preparing to become GPs, a constant theme is that none of us, no matter how experienced, can predict when a patient will die and all doctors 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 on compassionate grounds in September 2009, when doctors thought he was He only had a few months to live.
He survived almost three more years in Libya.
A ‘death wish’, tied to a tree by a group of terminally ill people and grieving 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 seem like a problem, but it is when it comes to debates about assisted dying and whether this is something our society should allow. This will be subject to a free vote by Commons MPs on Friday, and last week Palliative Care Minister Stephen Kinnock became the first minister to publicly confirm that he would vote in favor of adopting the law. extent.
The issue is the prospect of helping those who wish to end their lives to do so. This is not euthanasia – that is, giving someone the drug that kills them – but rather giving them the drugs to administer themselves (as is the case with Dignitas, the clinic in Switzerland that allows physician-assisted suicide ).
My big concern as a GP who spent years as a palliative care doctor is that any new law will follow the model that has been allowed for over 20 years in the US state of Oregon: if a patient is believed to has less than six months to live because of an incurable disease, doctors can provide life-ending medications, which the patient can then self-administer.
The problem is that research shows that doctors often cannot accurately predict how long these patients will survive. A study conducted in the BMJ in 2000, with 343 patients, found that doctors correctly predicted their life expectancy after entering hospice in only 20 percent of cases.
I am not against assisted dying, but against how it is proposed. I think that instead of focusing on life expectancy, we should look at the level of disability. I am thinking of people who live with a condition that makes life intolerable, that deprives them of their ability to move or even swallow, for example, and yet there is no obvious point at which their distress can end.
Here I’m thinking of conditions like motor neurone disease or strokes that affect both sides of the brain and leave the patient completely immobile; and, yes, also those with an incurable illness and who are entering obvious decline (which is, I think, an apt description of “terminal”).
Earlier this year, a patient he had treated for years was diagnosed with incurable cancer, but the exact timing was not given. Within a few weeks he was bedridden and the only option was to reduce the 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; regret, sadness, even anger. Some patients find comfort and peace, but that is not the case in all cases. Despite the care I was able to provide, my patient suffered.
Dr Martin Scurr says it is essential that we avoid basing any law on assisted dying on a random assumption about how much time a patient has left.
A fiercely independent man, he was devastated to find himself so suddenly bedridden and unable to even lift a cup for a drink. For more than a month he became increasingly distressed. Over and over he begged me to give him something to free him.
He died a while later than expected. If there is a new era of “assisted dying”, he may not have had the option of an assisted death because there was no specific time period. And yet, I think this is precisely the kind of scenario in which assisted dying may have merit.
Because ultimately, the reason for allowing (and helping) a person to end their life must be based on the intolerability of their condition, rather than on an arbitrary assumption about life expectancy.
The patient will be required to have normal cognitive function and professionals will have to make a judgment based on the patient’s opinion about the intolerability of their situation.
It seems strange to me that we have so many options to choose from in almost everything, other than our death. But if there is to be a change in the law, it is essential that we avoid basing it on random guesses about how much time a patient has left.