How come we don't know when to give up and when to keep going?
What price are we willing to pay for life? Would we do whatever it takes to prolong it? Should we be allowed to determine when to stop treatment, when we or a relative become seriously ill?
In the UK, treatment is paid for by the NHS (National Health Service), which means the doctors decide whether to carry on or not. In the US, it is mainly insurance companies who pay (unless you are poor and fulfil certain criteria, in which case the government run & funded Medicaid pay for the treatment). Consequently, the American hospitals are happy to continue treating people, as it is not them, but the insurance companies who pay. This is presumably why the US is the country which spends the most money on end-of-life care. As Louis Theroux points out in LA Stories, that also means the patients have to decide when to stop (within reason. Sometimes the doctors will stop treatment even though the patients want to carry on. However, I do not know whether that only happens to poorer patients). Crucially, though, a doctor is, usually, able to assess a patient's chances of recovery far better than the patient himself, whose judgement is often clouded by hope and ignorance.
Sometimes, it is the relatives who are unable to let go, as is the case for Francisco, who appears in LA Stories. After his stroke 3 years ago, he has been a vegetable in a hospice bed, unable to do anything other than grimace. He is mainly unconscious, though his sister insists he is improving. Francisco's doctor says, grimly, that these facilities did not exist 20-30 years ago. He also points out that by choosing to spend money on these vegetative patients, rather than letting them die, we are taking money from patients who could benefit more.
However much we may feel that Francisco's sister is torturing him by keeping him alive, can we blame her? How can anyone ever really decide when to give up on our, or our relative's life? Take the case of 22 year old Langston, who appeared in LA Stories, after a drug overdose had led to a traumatic brain injury. On the 4th day of him lying in a coma, the doctor told his family, that in the best case scenario, Langston would be in a persistent vegetative state, wearing a nappy, being fed through tubes, unable to talk or recognise anyone. In other words, at some point, the life support should be switched off (though she never said this directly). This was after a specialist had checked his brain scan.
After 37 days in a coma, Langston woke up and started talking, being fed from a spoon and recognising people. Later on, he started walking again. His doctor quipped that "he didn't read the textbook". Interesting that she doesn't consider the textbook to be wrong. His medical care cost millions of dollars, most of which was paid for by his insurance. Had his family trusted the doctors rather than their instincts, his life support may well have been switched off before he could wake up.
More worryingly: Had he not had insurance, would his family have been able to afford to keep him alive? Poor patients do get financial help, but what if you are considered able to afford it, by selling everything you own and spending the rest of your life in debt? How long would you choose to keep your relative on a life support machine then?
Sometimes, people avoid treatment for emotional rather than financial reasons. My father Ove was diagnosed with mouth cancer in 1997. After surgery, he had radiotherapy, which involved him wearing a plastic mask, specially constructed to fit his head as tightly as possible. He hated the treatment, but went through with it mainly because he felt that I was too young to lose him (I was 20). He always said that if the cancer returned, he would not seek treatment again. When the cancer did return 4 years later, he made sure I knew nothing about it. Partly because he wanted me to enjoy life and partly, I suspect, because he knew I would try to force him into treatment. The fact that he did not seek medical help has always felt like a rejection of life, of my mother and of me. Though he was looking at alternative treatments, I have no idea whether he had any. Their funds were limited, but surely he could have had something? However, he also seemed to really believe that he would not die as early as he did - he was even planning on opening a photographic studio.
He was a very proud man who felt that he would rather die a dignified death, than let himself be weakened by medicine or chopped up in an effort to remove a cancerous growth. A year later the cancer appeared to slowly spread to his tongue for the last 6 weeks of his life. Presumably, he could have had his tongue cut off, but he did not. He would definitely not have wanted a life of frenzied note scribbling and making incomprehensible noises rather than the animated conversations he was used to. He spent Easter with my mother, myself and my husband and died at home a few weeks later. Throughout, he had continued living life as he always did.
My father had always been determined to remain dignified and in control should he ever become ill, but this resolve was probably strengthened by witnessing his father's 2-year battle with cancer in the late 80s. My grand father Johannes was a hard-working farmer with 6 grown-up children, the oldest of whom is wealthy and controlling. Consequently, he was subjected to several different treatments over the course of his 2 year decline, as his children panicked about his impending death. Apart from the conventional cancer treatments, he also tried bitter almonds, which he hated, and lying in some sort of magnetic drum, which probably did nothing at all. The low point came when this elderly Dane who spoke no English, was flown to London to be treated at the Cromwell Hospital. As the most competent English speaker out of the children, my father was commandeered into accompanying him. As he could not stay in London for as long as my grandfather did, he was distressed at having to leave his vulnerable father in a hospital bed, armed only with a series of basic, written signs. At some point after returning to Denmark, my grandfather became bed-ridden and felt impotent as all he wanted to do was work again. "Don't you just want to rip out those big trees?" he asked his incomprehending sons one day, as he looked out at the grounds. They did not share his love of physical labour. Later on, when he finally died at the age of 76, after being weakened and depressed for a couple of years, it should have come as a relief. Instead, his eldest son rushed out to the nurse and asked her to revive him. She politely suggested that this would surely be unfair, and that he should rest in peace now. My uncle, defeated, left it at that.
Speaking of a 29 year old cancer patient, Louis Theroux poignantly says that "His end was probably hastened by his treatment, but he had also died fighting." Some patients will want to die fighting, despite this affecting their quality of life, whilst others, like my father, choose to maintain their current lifestyle for as long as possible, refusing to sacrifice anything for the sake of possibly living longer and/or being cured. Others, like Lynda Bellingham, choose to stop the treatment when it feels as though it is making their life a misery, staying in hospital when really, they will die anyway and so would rather be at home with their family. However, if the patient rejects treatment, there will often be a question mark in theirs and their loved ones' minds: Would they have been cured with treatment? Perhaps you can never know what the best option would have been, unless you are cured, of course. People are always happiest when they have control over their life and death, but this control may endanger our life or well-being. When and why do we give up? These are very personal questions - the answers to which, we hope, will not be determined by finances or outside pressure...
This post was first published in How Come....? on 22/09/2014 under the heading "How come we don't know when to give up and when to keep going?"