Essay: Medical issues in the care of the dying person

Putting into practice our convictions against euthanasia means taking seriously end of life care

It’s all very well to argue that assisting suicide is not the best way to help dying people, but what does this mean in practice?  How can we treat dying people with genuine compassion and respect for their dignity and humanity?  Is it ever right to say “enough is enough” to medical treatment, or should we try to sustain life for as long as possible by giving every possible treatment?

In this article, which is part of a series on euthanasia, assisted suicide and end of life care, we shall look at some real-world medical issues, asking how a Christian understanding of what it means to be human can be translated into practical caring.    

Individual responses to imminent death 

Over the years I have been struck by the differences in the responses of individuals as they face their imminent death, including those who have a strong Christian faith and hope of resurrection and future life. Some are very clear that they do not want invasive and burdensome treatment, and express their wishes for pain relief and symptom control only.  They seem ready to move on to the next stage of existence.  Others wish to cling to this life, whatever the cost in discomfort and distress.  They insist on exploring every possible treatment option, they refuse to give up and they fight on to the end.  Who are we to say which is better? 

I have also come to realise that none of us can know how we ourselves will react until we face the reality of a terminal diagnosis.  As individual moral agents, God gives us the freedom to make wise choices about our own lives, and we must respect that freedom in others, even if we would not make the same choices ourselves.

The problem of medical over-treatment

One of the driving forces for the legalisation of euthanasia and assisted suicide is a type of medical over-treatment that doesn’t respect the limits of our human abilities to treat disease.  There seem to be many factors behind the epidemic of medical over-treatment in rich countries.  Sometimes it is driven by medical arrogance and machismo, sometimes by perverse incentives that reward futile and burdensome treatments.  Frequently it seems to be driven by medical inexperience or by fear of litigation.  Even very experienced doctors may persist with over-treatment because of a sense that death represents failure and proves that the doctor was not good enough to keep the patient alive.   It is not unusual for well-meaning relatives to compound the problem by insisting on every possible treatment as death approaches, whatever the consequences for their loved-one.

Over the last few decades we have increasingly medicalised death and the process of dying.  Death has become something that happens in hospitals, when the medical struggle against disease is finally lost.  Dying has become a medical event.  Death is what happens when the doctors run out of treatment options.  You keep going for as long as possible.  You have every treatment that’s available but when you run out of treatment options, when the doctors say, “We are very sorry but we have no other treatments left” then you die.  Death becomes defined by what doctors can and cannot do. 

Religious people often demand futile and burdensome treatment

In 2009 a study of 345 patients with advanced and terminal cancer was carried out in the USA.  The researchers assessed each patient’s attitude to death and the extent to which religion was important to them in coping with their illness.  The researchers then followed every patient over the last year of life until death.  Paradoxically they found that “religious coping behaviour” was associated with a markedly increased preference for receiving all possible medical measures, and lower rates of making a Do Not Resuscitate statement, or completing an advance refusal of treatment, “a living will”.  In the last week of life people with religious coping were more likely to die in an intensive care unit receiving full life support to the very end, compared with the others. 

Why was this?  The researchers found that religious people said that they believed that only God could decide when a patient should die, and hence refusal of any possible treatment was “tantamount to euthanasia”.   Others said they believed they had to carry on with maximal treatment in case God was going to do a miracle.  Some said that accepting palliative care meant “giving up on God”.  These results suggest that many believers think that they must have all possible treatments to the very end.

But it seems to me that these attitudes may reflect a deep-seated fear of death, a psychological denial of its inevitability and a desperate desire to use medical technology to hold death at bay for as long as possible, whatever the personal consequences.  The temptation for modern doctors is to collude with this fear and denial of mortality and to use powerful and invasive technology in an inappropriate and harmful manner.

Recognising the limits that come from our human nature

But doctors and health professionals, above all, must recognise the limitations of their technology and their abilities.  This means that there are limits to what doctors can and should do in the quest for healing and preservation of life. In fact it can be argued that one of the primary roles of medical professionals in our society is to teach modern people the limits that come from our physical nature. 

This is what theologian Stanley Hauerwas has called “the wisdom of the body”.   Disease provides an opportunity for learning more about the givenness and limitations of our physical nature.  “Medicine can be viewed as an educational process for both doctor and patient, in which each is both teacher and learner.  It is from patients that physicians learn the wisdom of the body.  Both physicians and patients must learn that each of them are subject to a prior authority – the authority of the body… medicine represents a way of learning to live with finitude”. 

At the heart of all decision-making about medical treatments is the balancing of the likely benefits of treatment against its burdens and risks.  Good medical care has always included the withholding or withdrawing of treatment that is excessively burdensome relative to its likely benefits.  This means that the weighing up of burdens and benefits of possible treatments is critically important – something that should be undertaken jointly and collaboratively by doctors, patients and their relatives.  

Here is an individual with advanced bowel cancer.  Is the burden of chemotherapy treatment, with all its unpleasantness, complications, risks, hospital visits, tests, and expense, worth the benefits of increasing the chances of, maybe, a few extra weeks or months of survival?  The answer is, “It all depends”.  In different circumstances, and with different individuals, the balance between burdens and benefits will change. 

In some situations those extra weeks that invasive treatment can bring may be of profound significance and richness, an opportunity for all kinds of “unfinished business” to be completed; the fulfilment of a long-cherished ambition, or the chance to enjoy the presence of children or intimate friends.  In other situations those three months may seem to bring little benefit compared to the burdens, upset and complications of invasive treatment.  It is all too possible for medical technology to transform the last weeks of life from a time of peaceful preparation for death into a living hell for all concerned.

Good medicine recognises the difference between intention and foresight

The pro-euthanasia lobby ridicules the traditional view that doctors may give a drug to relieve suffering that may incidentally shorten life, but may not deliberately give a lethal medicine to end life.  In their view this is deeply hypocritical.  They argue that doctors are in reality intending to kill with pain-killing medicines but they mask their activities in order to avoid prosecution.   This is supported by the misleading argument that morphine is a highly dangerous and lethal poison and that when doctors give morphine at the end of life they are intending to kill but covering their tracks. 

This is dangerous misinformation.  Morphine and other opioids are highly effective pain killers, but in fact they are not dangerous lethal drugs, unless used in massive overdose.  When doctors in the Netherlands and elsewhere intend to kill, directly or by assisting suicide, they do not use morphine.  As we have seen they use completely different drugs – barbiturates (in massive overdose) and muscle relaxants.  These are drugs of the anaesthetist, capable of inducing rapid onset coma and muscle paralysis, not the drugs of palliative care doctors.  The misinformation about morphine is dangerous because patients may refuse to take adequate amounts of opioids for pain-relief, fearing that the doctor is secretly trying to end their lives.  In reality there is good scientific evidence that when used appropriately in terminal illness, morphine and other opioids do not accelerate death, but paradoxically they sometimes extend life, as once pain and distress is controlled effectively, patients frequently regain the will to live.

(Photo by John Campbell)

Nevertheless, good medicine recognises the difference between intention and foresight.  This is the so-called “principle of double effect”.  This principle is often caricatured by opponents as an obscure form of “Jesuitical” reasoning which is irrelevant to everyday life.  In reality it is a very basic ethical principle of medical practice. 

Since the time of Hippocrates it has been recognised that virtually all medical treatments carry negative side-effects.  In some cases these side effects can be extremely severe or life-threatening.  The intention behind the initiation of a treatment, the prescription of a drug or the undertaking of a therapeutic procedure, is to bring good to the patient – to restore to health, to oppose a pathological process or to bring relief from unpleasant symptoms of disease.  Good intentions are central to the practice of moral medicine, as was stressed by Hippocrates.  “If the love of man is present (philoanthrope), then love of the art (philotechne) is also present.” 

The Hippocratic medical tradition

Arguably for the first time in the history of healing and healers, the Hippocratic medical tradition drew a clear distinction between medical interventions intended to heal and those intended to harm.  The Hippocratic Oath stated “I will use treatment to help the sick according to my ability and judgement, but I will never use it to injure or wrong them”.

Medical historians have recognised that this was a significant break from the previous tradition in which the roles of the doctor and the sorcerer where frequently combined.  Margaret Mead, the anthropologist, put it like this, “For the first time in the history of humankind there was a complete separation between killing and curing.  Throughout the primitive world the doctor and the sorcerer tended to be the same person.  He with the power to kill had the power to cure. He who had the power to cure would also be able to kill…  With the Greeks, the distinction was made clear.  One profession was to be dedicated completely to life under all circumstances, regardless of rank, age, or intellect – the life of a slave, the life of the Emperor, the life of the immigrant, the life of the defective child..”

This dedication to human life has marked the medical profession for 2000 years.  This is why physicians who were faithful to the Hippocratic ideal refused to act as front line combatants tasked to kill enemy soldiers, they refused to participate in judicial executions, they refused to participate in the torture of prisoners, they refused to use psychiatric drugs to sedate political dissidents, they refused to transplant organs from executed criminals.  Their commitment was to the protection and preservation of life.  And so there is a terrible irony and confusion in the suggestion that of all the possible professions who might be enrolled in the practice of assisted suicide, it is doctors who should become the professional killers, using their skill and expertise to calculate lethal dosages and induce swift cardiac arrest at will. 

In Hippocratic terms the intention behind every medical treatment should be to bring benefit, to promote the good of the patient.  But whilst the intention is to bring good, all experienced clinicians are well aware of the severe and even life-threatening risks that some treatments bring.  In my own medical practice I am sorry to say that some of the treatments I prescribed in good faith and with good intentions, turned out to have devastating and even fatal side effects.

Of course it is possible to give dangerous treatments with evil intent.  It is possible for doctors to use medical interventions for homicidal purposes.  This is the stuff of the medical whodunit paperback or horror movie.  But I think we all share a deep moral intuition that distinguishes homicidal medical activities from the normal kind!

In the treatment of the dying patient, my intention in withdrawing curative treatment is to relieve suffering, to bring benefit to the patient.  I can foresee that my treatment decisions may shorten life, but that is not my intention. 

The birth of palliative care

One of the most influential individuals in promoting effective pain relief at the end of life was Cicely Saunders.   She was an extraordinary person who pioneered a new way of caring for dying people that went round the world, and her remarkable initiative still reverberates today.  Initially she trained as a nurse and then as a medical social worker in London in the 1940s.  At that time traditional medical practice placed little emphasis on the care of dying people, who were often grossly neglected and abandoned in the last days and weeks. 

Cicely was deeply moved by the experience of caring for a dying patient over the last two months of his life and this experience became the touchstone for her life.  She felt a deep sense of Christian vocation to devote her life to the care of the dying.  At the age of 33 she enrolled as a medical student at St Thomas’ Hospital in London and trained as a doctor.   Her strong Christian faith was combined with a deeply compassionate nature, an innovative and creative approach to caring and a steely determination to do the best for her patients.  After qualifying as a doctor and increasingly putting her radical ideas into practice, her work became focussed in the creation of a new purpose-built hospice in South London, St Christopher’s.

Dealing with “total pain”

One of her most profound insights was the concept of “total pain”.  An elderly person was dying of cancer.  There was gnawing and continuous physical pain because the cancer cells had invaded the bone.  The physical pain was incessant, destructive, and dehumanising.  But there was also mental or psychological pain, anxiety about what each day might bring.  Often the fear of pain was as bad as the pain itself.  There was despair and a sense of hopelessness at the recognition that life was coming to an end.  Then there was relational pain, concerns about the effect of the cancer on a spouse or child.  Perhaps there had been no contact with the oldest son for years, and now death was coming with no chance of reconciliation. 

And finally there was spiritual pain, maybe from feelings of unacknowledged guilt from past events, or a sense of the meaninglessness of existence.  Cicely realised that each form of pain had to be addressed in order to maximise the well-being of the patient, and where possible the family and relatives too, over the critical hours and days as death approached.  She discovered that if anxiety, loneliness and spiritual pain were recognised and tackled, then very often the physical pain was much easier to control and alleviate.  

Conversely it is a common observation of palliative care doctors that when physical pain does not seem to respond, despite the administration of powerful medical treatments, it is highly likely that psychological, relational and spiritual factors are involved, and must be addressed.   Many of the tragic high profile cases of apparently “uncontrollable pain” that are used by campaigners to promote the need for assisted suicide, seem to be cases where psychological, relational and spiritual factors dominated.

In order to tackle physical pain Cicely Saunders used the latest pharmacological research evidence on pain-killing medication, together with meticulous observation and documentation from thousands of patients that she and her colleagues had cared for.  Using the expertise that they had accumulated, they demonstrated that it was possible for virtually all physical pain to be abolished or at least substantially reduced, without causing extreme sedation and drowsiness.  Her aim was that patients should be alert and able to respond to family, relatives and carers in the vital last days and hours of life. 

Not just physical pain but all unpleasant symptoms, nausea, itching, cough, dry mouth and so on, were to be addressed in painstaking detail with skilled nursing care.  Psychological pain was tackled with human contact, friendship, music, humour, encouragement of hobbies and interests, as well as professional counselling and support when necessary.  Relational pain was approached by supporting and encouraging family members to be present, and encouraging openness and honest communication. 

And spiritual pain was addressed by placing prayer and worship at the centre of the community she was forming, inviting patients to celebrate communion (often in beds and wheelchairs) in the Chapel which was placed symbolically at the centre of St Christopher’s. 

Cicely stressed that St Christopher’s would be open to patients of all faiths and of none, but hoped “to render higher and more valuable service to our patients in their spiritual and mental than in their physical needs.  These will… go hand in hand for faith in God is made infinitely easier by the faith in man which is created by the touch of kindness and the relief of pain and discomfort.  Our Lord himself sent his disciples out both to heal and to teach; and work which combines both may have something of his own gracious presence.  Though we cannot heal there is a great deal that can be done to relieve the suffering of every dying person.”  Dr Robert Twycross, another pioneer of the movement who had worked with Cicely Saunders, wrote: “Palliative care developed as a reaction to the attitude, ‘There’s nothing that can be done for you’.  This is never true.  There’s always something that can be done.”

Cicely pioneered an approach which put the dying individual at the centre of care.  Concern for the individual wishes and needs of each individual is at the heart.  Pillows are arranged and rearranged, the television is moved an inch or two until a comfortable position is found for the patient who cannot move their head.  There is endless meticulous attention to mouth care, bathing sore eyes, putting cream on itchy skin, placing cushions between aching knees.

Being there

But above all Cicely and her colleagues discovered that it is not primarily about doing things to patients – it is about “being there” for each individual. These words encapsulate her approach; “suffering is a mystery that demands a presence”.  Through a number of intense and personal experiences of caring she learnt that “it was possible to live a lifetime in a few weeks; that time is a matter of depth, not length; that in the right atmosphere and with pain controlled so that the patient is free to be herself, the last days can be the richest, they can be a time of reconciliation that makes the dying peaceful and the mourning bearable.” 

One of the best known of her sayings is “You matter because you are you, and you matter to the end of your life.  We will do all we can not only to help you die peacefully, but also to live until you die.”  “To live until you die” became one of the slogans of a new kind of caring and the foundation of the medical specialty of palliative care.

Cicely Saunders and St Christopher’s Hospice in South London became the hub of a movement that has spread out across the world.  The philosophy and principles of palliative care were established and taught, research into pain relief and symptom control took off and training programmes were established.  Many other hospices were established but increasingly the principles and practices of palliative care were extended into the community, to help people dying at home, and into general hospital practice.  What Cicely had founded was a concept, an approach to the individualised care of the whole person, much more than an institution.

She was strongly opposed to the legalisation of euthanasia.  In 1969 when an early Bill to legalise euthanasia was being debated in the House of Lords she wrote to the Times newspaper, “We, as doctors, are concerned to emphasise that there are few forms of physical distress which cannot be dealt with by good medical and nursing care, that the emotional and spiritual distress of incurable disease requires human understanding and compassion and a readiness to listen and help, rather than a lethal drug.”

Cicely’s arguments against euthanasia and all forms of medical killing were put forward forcefully and simply.  First, it is unnecessary – pain can nearly always be controlled and alleviated, the body and the mind can be made comfortable whilst the patient remains alert and fully themselves.  “You don’t have to kill the patient in order to kill the pain”.  Second, it is dangerous – “any law permitting voluntary euthanasia pulls the rug from under the vulnerable”.  Once euthanasia was made available it would put pressure on the sick and the elderly, all too conscious of the demands they put on their relatives. “To make voluntary euthanasia lawful would be an irresponsible act, hindering help, pressurising the vulnerable, abrogating our true respect and responsibility to the frail and old, the disabled and dying.” 

There is no doubt that the powerful and attractive model of palliative care, which was increasingly spreading across the UK and then across the world, played a vital role in counteracting the legalisation of euthanasia in the UK from the 1960’s onwards.  Some years ago I happened to be sitting next to an eminent medical member of the House of Lords who had been at the heart of debates about euthanasia for decades.  I asked him why he thought that euthanasia had developed in the Netherlands from the 1960’s but had not been legalised in the UK, despite numerous attempts.  “Oh that’s very simple.  I can sum up the whole thing in two words, “Cicely Saunders…”

This article is adapted from material in my book Right To Die? Euthanasia, assisted suicide and end of life care. You can find the rest of my material on euthanasia and the end of life here, including my other introductory essays.

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