Treatment or palliative care?Posted by Michael Edwards
Terminally ill patients are frequently encouraged to keep on fighting. Being Mortal, Surgeon Atul Gawande’s book, makes a convincing case for considering palliative care earlier reports Michael Edwards.
Over the last century mankind has learnt how to live longer. In developed countries life expectancy has risen from 50 to over 80. Medical advances have enabled us to postpone the visit of the Grim Reaper. Whilst we have become better at prolonging live we have become less adept at dying a “good death”, living to the last breath with autonomy, dignity and joy as Gwande advocates. But discussing death and our progress towards the final goodbye remains a taboo.
With a rapidly growing armoury of biotherapy, chemotherapy and surgery at doctors’ command, the diseases that once killed us in our sixties and seventies – cancer, heart disease, stroke and emphysema – are increasingly treatable. Moreover the performance of individual doctors, hospitals and health authorities is quantitatively recorded with marginal deviations from the statistical norm analysed in detail.
For many patients, families and doctors doing nothing in the face of developing disease and tumours is not an option. “There must be something,” say close family as they scour the internet for the latest wonder drug. In our culture a month or year of life is so highly valued that arguments focus almost exclusively on the financial cost of a medicine or treatment. “What price can you put on a year of life?” is the line inevitably trotted out in a media report on a budget-strapped health authority refusing to fund the latest wonder drug.
“Cancer patients miss out on revolutionary drug,” was an indignant headline in The Times telling the story of nivolumab, a drug that help a patient’s immune system fight tumours. The report neither quantifies the increase in life expectancy nor makes any reference to side effects. Though for some patients palliative care may have been a more humane option.
Nivolumab’s side effects may, according to Chemocare, include fatigue, shortness of breath, musculosketal pain, decreased appetite, coughing, nausea, vomiting, weakness, diarrhea, swelling, fever, rash and far more too many other unpleasant consequences to list here. As not all patients suffer all symptoms every patient would like to believe that he or she would be lucky in the side-effects lottery. For the record the NHS approval system may licence nivolumab, once analysis has been completed, in 2016.
Gawande makes the point that time taken for the treatment eats up the years and months left. What is the quality of life when three months of chemotherapy is scheduled out of a life expectancy of a year? The Boston surgeon believes that patients should be encouraged to think more realistically about treatment outcomes. Too often hope deceives. Of course the situation for a 33 year old with a family is very different to that of an 83 year old.
Surgeons are too optimistic in both the length of life expectancy they offer and the benefit of the treatment believes Gawande. A doctor treating Gawande’s father suggested that post treatment Gawande Senior would soon be back on the tennis courts: in reality his tumour of the spine condemned him to a life of falls and the prospect of a quadriplegic future.
Gawande’s challenging idea that patients should turn to palliative care earlier, rather than sacrificing quality of life to aggressive treatments, is backed by research as well as his own professional experience. In 2010 research at Massachusetts General Hospital looked at two groups of patients suffering from advanced metastatic small-cell lung cancer. Patients in the group receiving early palliative care group lived 11.6 months compared to 8.9 months for the standard group. More chemotherapy does not always mean more life.
High quality palliative care which not only aims to reduce the symptoms of the disease such as pain and nausea but also to cater for the patient’s emotional well-being improves the quality of life and results in less depression the New England Journal of Medicine reported (19th August 2010).
Too often medical professionals take the easy option, backed by the active militaristic language, of burning and cutting away at the disease. Gawande’s book, not an uneasy read with its harrowing case studies, provides examples of where patients have benefitted from frank discussions. Doctors have admitted that treatments may not be successful, have been honest on how life-limiting invasive treatments may prove to be.
When asked what his minimum expectations from life were one patient said life would be worth living if he could watch football and eat chocolate ice-cream. But many patients do not wish to be resuscitated or receive further life-prolonging treatment if they would become utterly dependent on care.
Discovering what a patient wants cannot be achieved in a five minute conversation with an untrained doctor Gawande argues. Patients need time to be helped through a process to come to terms with the extent of their illness and what they want from their remaining days. Understanding the finitude of time helps patients to make the most of their last weeks, prioritising time with family and friends, putting their affairs in order.
Ultimately we must accept that we are mortal and prepare for the arrival of declining health. It would be wise to think ahead, to identify priorities for our final months and to consider how much we are prepared to suffer. Of course this is an ongoing process as we age and our circumstances change. We should consider whether to gamble with treatments that may actually be life-shortening, to discuss our wishes with our loved ones before pain, drugs and emotions impede our ability to think clearly on a difficult dilemma.
Being Mortal by Atul Gawande is available through Amazon as a book or for download.
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