Dr. Michael Platt - Pain, Suffering, and 'Loss of Dignity': Valid Reasons for Killing?

Dr. Michael Platt is Senior Consultant and Honorary Senior Lecturer in Pain Medicine and Anaesthetics at Imperial College Healthcare NHS Trust, and practises in the area of Pain Medicine and Palliative Care.

Seminar held on 28 April 2010

What has happened? – The rising demand for euthanasia, assisted suicide and ‘the right to die’.

Over the last few years there have been a number of cases of death by ‘euthanasia’ or ‘assisted suicide’ and an apparent increase in requests for a ‘right to die’. Dignitas takes ill and not-so-ill people to Switzerland, where they can die at a time of their choosing with assisted suicide. Why is this now becoming such an issue? Are people so afraid of dying in pain that they demand the ‘right’ of a so-called ‘good death’, pain-free, without suffering and without ‘loss of dignity’? Why do people not trust the acclaimed National Health Service sufficiently to care for them that death is not a terrible suffering with uncontrollable pain, without killing them? Why are not hospices, designed and staffed by caring people and charged with relieving the suffering of dying, trusted to do so?

Historically, those dying tended to be looked after by families, possibly with some input from the family doctor, the GP, who would pop in and administer pain-relieving remedies. Most were surrounded by the love of family, and tended as such. Some would have severe pain, untreated or unmanageable, with family desperately trying to ameliorate the pain. Life was shorter; death was due to pestilence, war and infection. Death was much more a part of society and living, less of a taboo than it would appear to be today. Death rates by different causes have changed over the years, affected by the invention of antibiotics, and prior to this, the advent of public hygiene and the invention of the water closet. The Public Health Act of 1858 sought to reduce the deaths due to cholera in London and other cities. Death slowly began to become more of a controllable medical issue and people began to live longer and survive into old age (see Table).

By the middle of the twentieth century, more people were dying in hospitals, mainly from cardio-vascular disease and cancer which was starting to become one of the main causes of death. Medicine demanded cure. Death meant failure and medics were not interested in the dying. More people started to survive cardiac disease with the development of cardiology and cardiac surgery. However, hospitals were not ideal places in which to die. Often dying patients were not well cared for, the main focus of care being the well, or at least those more likely to survive with medical and surgical care. Pain was not well managed – even in the few hospices that existed, dying patients were often told ‘there was nothing to be done’. Dame Cicely Saunders made it her life’s work to revolutionise the pain and distress of dying and brought in the concept of ‘total pain’ – the idea that the dying not only have pain and other symptoms of disease such as nausea and breathlessness, but also issues about existence, spirituality, family and financial matters. This constellation of negative traits contributes to an overall sense and condition of suffering. As an almoner at St. Thomas’s Hospital, Cicely Saunders was shocked at the lack of care and completed a medical degree in order to change attitudes. She began the use of liquid morphine solution orally administered by the clock in appropriate doses to alleviate pain before it became an overwhelming problem. She opened St. Christopher’s Hospice for the holistic treatment of the dying, also encouraging research and teaching – the birth of modern palliative care.1

The paradox of modern end-of-life care is that as universal free medical care is so much improved, there is so much distrust and fear of painful, terror-filled death. Is the ethos of care in post-modern society dead? Are we so self-sufficient and autonomous that care is no longer important, least of all care of one’s fellow man? Modern death is taboo – it occurs only behind closed doors. Modern medicine is no longer a mysterious art practised by special medical practitioners with secret potions, but approachable via the internet, television and reading. Doctor no longer knows best, but gives a choice of possibilities to the patient who then can choose, using his or her inalienable ‘right’ to autonomy. What has happened to the trust between doctor and patient? Why is paternalism considered so bad that doctors can no longer be trusted? ‘Principlism’, the use of reasoned principles of ethics, as espoused by Beauchamp and Childress, rules medical ethics. Care is not mentioned. Virtue is not fashionable. Autonomy of the patient rules, apparently, regardless of justice – although Beauchamp and Childress emphasised that autonomy does not necessarily come first all the time.2

The Journey to Today

A short history of care and vocation:
Medicine in the western world began with the monasteries – repositories of knowledge held by monks throughout Europe. The parable of the Good Samaritan was the model used in the drive to care for those disadvantaged or ill. Some monks were experts in herbalism and grew herb or ‘Physic’ gardens used to treat the ill. Each monastery would have a hospice for the care of the ill. The ‘vocation’ of these monks was medicine, while others might have vocations in law or teaching – the origins of what became the professions – ‘professing a vocation’.

In the UK, with the destruction of the monasteries by Henry VIII, universities became the repositories of knowledge, attracting those with a calling to treat the sick, or to enter the other professions. Medical and surgical colleges became licensed, and the profession looked after itself, under licence from the Government. Care was important and patients trusted the medical and nursing professions to look after their illnesses and to alleviate pain and physical suffering.

In the 1980s, Harvard3 was exporting Managerialism and commerce massively – converting communism to western style democracy and finance, and demoting as inferior any other systems of organisation, including professionalism, seen as old-fashioned and wasteful. The Thatcher Government welcomed this and sought to put more management into the NHS – seen as big ‘black hole’ of wasteful spending.4

Post-modern society insists on autonomy – patients want more control, and ‘choice’ has become the buzzword. Society seems to be demanding ever more perceived control over what appear to be highly unpleasant occurrences and issues that occur in life. Fear of pain and death have created a market for the seeking of more control over death – ‘I want to die and not suffer’. And yet... Palliative care has grown and hospices have developed apace, but only 25% of the population die in a hospice – or are cared for by them... Why? Palliative care budgets are still inter-locked with oncology (cancer) care, so it is difficult for them to treat all the dying satisfactorily.

Instead of doctors doing their best for patients at all times, with a caring bias and professional dedication, their working times were contracted, no longer working overtime to ensure patients were properly and adequately treated. GPs now had to be incentivised to treat patients. Shipman terrified all of them – no longer would patients have good pain control, for fear of inadvertently causing death with morphine.5,6  I generalise of course, although many do seem to have a fear of morphine!

What can we do? How can we alleviate the desire to die by assisted suicide or euthanasia?

Pain:
All physical pain symptoms, as well as other physical symptoms such as breathlessness and nausea can and should be adequately controlled – whether they be due to cancer, heart disease, lung disease, motor and nerve disease, joint disease or other even more complex types of illness!7

Varied techniques can be used, including invasive ones, especially in concert with pain specialists and neurosurgeons. For example, the intense pain of mesothelioma, which invades nerves in the shoulders and neck, can be relieved with the use of spinal cord tractotomy under local anaesthesia.8,9 Many other types of pain can be relieved by the use of various drugs and combinations, including nerve blocks and acupuncture. Ignorance in doctors and other professionals is usually the cause of inadequate relief of pain.

Suffering:

Suffering is a problem which is never simple, and about which there is much research going on. Many things contribute to it and various models of suffering have been espoused. It is essentially the agony caused by a combination of pain and other negative attributes, including:

  1.     family and friends issues – communication and separation;
  2.     financial issues – often related to concern about family;
  3.     doctor and nurse issues – communication, care and compassion;
  4.     existential issues – ‘What happens when I die? I am not ready to die…;
  5.     fear of dying itself;
  6.     fear of pain – ‘Will I die in agony?’;
  7.     feelings of fear and anxiety which add to all of these;
  8.     fear of dying helplessly dependent on others, demented and incontinent.

In a hospice, there are varied specialists and consultants who can aid in dealing with all of these and help to assuage some of the issues, fears and anxieties that occur at the end of life.10 Here, suffering requires the most important basic category of all caring. It gives caring a unique quality and soundness, and is something which all forms of care aim to alleviate. Real caring is not just an abstract idea, philosophy or ideology. It is, rather, concrete work confronting suffering in real situations, enabling those cared for not to feel helpless and dependent, but loved and cared for.

Loss of Dignity
What is dignity? There appears to be no accepted universal definition of dignity, and yet it is something that many people fear losing at the end of life. The concept of dignity includes human values. Used in a religious sense, it means existence as a being in God’s image, with all the associated values. It is used by the World Health Organisation and the United Nations in a legal sense of the values associated with being human – a reasoning and sentient being –, and having respect for these.

What do individuals in our Western Society think it means? Reading various descriptions and hearing about others’ fears of dying, one gets the impression it is really about loss of self-respect, having to have others clean up after one’s incontinent bowels for example, or lying completely helpless in bed relying on others to feed one, to clean one and generally to nurse one’s diseased body at the end of life.

Autonomy is a strong theme in post-modern society and its relationship to dignity, with the loss of self respect described above, clearly has a powerful association with the loss of autonomy.

Dame Cicely Saunders would tell a patient at the end of life for whom she was caring: ‘You are important because you are you’, emphasising the importance of individual value and care around each patient, not allowing anyone to feel unloved or uncared for – certainly not letting them feel any loss of dignity.

Conclusion

So have we lost our spiritual reality, with a fear of losing our ‘autonomy’ as individuals? Are we simply terrified of dying in unutterable pain, afraid of being incontinent, demented and at the mercy of dedicated carers? Is this what we really mean by wanting a ‘right’ to die and fearing a ‘loss of dignity’?

If we are in a loving environment , cared for and valued, with pain and discomfort relieved, our spirituality cared for, as well as fears and anxiety assuaged, perhaps we will feel less unloved and perhaps not experience such a loss of dignity.

Therefore, I would suggest that we need not have to feel intense suffering and loss of dignity at the end of life, provided that society and the health service in particular, adequately and appropriately provide for and care for individuals at that time, removing any apparently valid reasons for killing.

We need to encourage an ethos of care in both society and medicine to ensure care for the most vulnerable in our society, especially at the end of life.

William Hubert Vanestone wrote The Stature of Waiting and the following passage from it is reproduced as it has helpd many to understand the frustration of waiting for death:

When a Christian believer is going through any distressing or disquieting experience, it can be a source of comfort and encouragement to him to remember that the Lord Jesus ‘knows all about it’ – that He Himself went through the very same experience. So it may be that the thought of the handing over of Jesus – of His transition from action to passion can be of practical help to people who must face, or have already faced, a similar transition in their own lives. We have already stressed that the word ‘passion’ does not mean, exclusively or even primarily, ‘pain’: it means dependence, exposure, waiting, being no longer in control of one’s own situation, being the object of what is done. So the passion of Jesus ‘connects’ not simply or even primarily with the human experience of pain: it connects with every experience of passing, suddenly or gradually into a more dependent phase or area of life – with going into hospital, with retiring or losing one’s job or having to wait upon the actions of other people and other factors beyond one’s control. If the thought of the passion of Jesus is helpful at all, then it may be helpful not only to the person who is bearing the ‘cross’ of pain but also to the person who feels that he is ‘on the sidelines’, that he has become useless or ineffective, that he is no longer making his mark in the world or his contribution to it. ‘To be handed over’ in ways such as these is particularly disquieting to a person who, by habit or temperament, has been exceptionally active and energetic or a notable achiever; and such a person may well find comfort in the thought that a similar pattern appears in the life of Jesus – that He also passed from activity and work and achievement into a final phase of waiting and dependence and passion.
    [William Hubert Vanestone (1923-99), 'The Road to Gethsemane', from The Stature of Waiting, 1982, ]

REFERENCES:
(1)    St. Christopher’s Hospice Website: http://www.stchristophers.org.uk/
(2)    Beauchamp & Childress, Principles of Biomedical Ethics, Oxford University Press, 2008.
(3)    Martin, Roger. ‘The Age of Customer Capitalism’, Harvard Business Review, Jan. 2010.
(4)    Griffiths, NHS Management Inquiry Report, DHSS, 25 Oct. 1983.
(5)    Smith, Dame Janet, Shipman Inquiry Fourth Report – July 2004, Crown copyright, 2004.
(6)    Smith, Dame Janet, Shipman Inquiry Fifth Report – Dec. 2004, Crown copyright, 2004.
(7)    Kutner, Jean S., et al., ‘Time Course and Characteristics of Symptom Distress and Quality of Life at the End of Life’, Journal of Pain and Symptom Management, Vol. 34, Issue 3, Sept. 2007, pp. 227-36.
(8)    Knighton, Mick: http://www.mickknightonmesorf.org/mesothelioma-info/what-the-specialists...
(9)    Jackson, M., et al., ‘Percutaneous Cervical Cordotomy for the Control of Pain in Patients with Pleural Mesothelioma’, Thorax 54(3), March 1999, pp. 238-41.
(10)     Crawford , Gregory B. and Price, Sharonne D., ‘Team Working: Palliative Care as a Model of Interdisciplinary Practice, Medical Journal of Australia (MJA) 179, 2003, S32–S34.

Table: Death Rates by Cause of Death, 1900–2005 (per 100,000 population)

Year

Tuberculosis, all forms

Malignant neoplasms (cancer)

Major cardiovascular diseases

Influenza and pneumonia

Motor vehicle
accidents

1900

194.4

64.0

345.2

202.2

n.a.

1910

153.8

76.2

371.9

155.9

1.8

1920

113.1

83.4

364.9

207.3

10.3

1930

71.1

97.4

414.4

102.5

26.7

1940

45.9

120.3

485.7

70.3

26.2

1950

22.5

139.8

510.8

31.3

23.1

1960

6.1

149.2

521.8

37.3

21.3

1970

2.6

162.8

496.0

30.9

26.9

1980

0.9

183.9

436.4

24.1

23.5

1990

0.7

203.2

368.3

32.0

18.8

2000

0.3

200.5

340.4

24.3

15.2

2001

0.3

194.4

323.9

21.8

15.4

2002

0.3

193.8

318.3

22.9

15.5

2003

0.2

191.5

310.3

22.4

15.4

2004

0.2

187.4

293.8

20.9

15.0

2005

0.2

188.7

288.8

21.3

15.3