Abstract and Keywords
This concluding chapter sums up the key findings of this study on patient choice in end of life care. The philosophy of medicine and of end of life care in particular which emerged in the second half of the 20th century stressed the importance of patient choice in the light of information provided by the doctor. Consumerism is taking over health care, and the best interests of patients are being seen as patients getting whatever it is they choose, in terms of treatments, care and place of death. This chapter suggests that an end of life service should have the following characteristics: realism, fairness, humanity, and adoptability.
The philosophy of medicine and of end of life care in particular which emerged in the second half of the twentieth century stressed the importance of patient choice in the light of information provided by the doctor. In particular, doctors supported patients:
◆ by ascertaining how much information patients required and providing it sensitively;
◆ by listening to patients' views about their own goals and values;
◆ by discussing the possible impact of various treatments on their lives so as to work out which treatment would benefit a particular patient;
◆ by giving explanations and advice based on professional experience.
The patient choice emerging from discussions of this kind could be seen as reflecting both the patient's goals and values and the doctor's medical responsibilities and expertise. It was in fact joint decision-making directed at the best interests of the patient. Those ‘best interests’ could be spelled out in terms of the prolongation of life, the relief of suffering and the maintenance of function. It would be wrong to suggest that consultations with this content in end of life care were inhumane or ‘medicalized’. There is no reason to think that the professionals in attendance would be other than caring, compassionate or friendly. But it must be stressed that being caring, compassionate and friendly are not matters of expertise. When Dame Cicely Saunders suggested that professionals should ‘watch and listen’ she was not recommending a technical intervention. She was thinking simply of the invaluable comfort which one human being can give to another facing life's end.
To a great extent professional bodies are losing sight of these simplicities. Consumerism is taking over health care, and the best interests of patients are being seen as patients getting whatever it is they choose, in terms of treatments, care and place of death. If this is a cultural change then it will continue whether we like it or not. Currently politicians believe that patients want choice above all, and professionals have not effectively opposed them, so we can expect many politically driven initiatives such as performance measures based mainly or solely on achievement of patients' choices. There is a real possibility that health
Politicians have long been looking for sticks (performance measures such as quality markers, targets, ‘metrics’) to beat the backs of those providing end of life care. They obviously cannot use waiting times, but preferred place of death is an obvious candidate. So we can expect pressure on patients to choose in advance what is likely to be achieved, or urgent transfer of imminently dying patients to their previously chosen place of death, just to achieve a satisfactory performance rating for the professional or service.
Second (and especially relevant in the UK), it is logically impossible to run a consumerist choice health service within a publicly funded health service. We outlined the key concepts of the free market economy in Chapter 1 (competition, prevention from harm, worldwide alternatives, consumer responsibility for what is chosen, consumer payment for what is chosen). The consumerist choice model entitles and coerces patients at the end of life to choose from the entire range of technically possible treatments and care, and then forces them to confront sufficient information to take consumer responsibility for their choices. A service run on these lines is incompatible with a service, such as the National Health Service, which is free at the point of delivery, in which the values of equity and cost-effectiveness are essential, and where professionals still take some responsibility for treatment decisions. Many people may prefer an end of life service run on free market lines; our point is simply that it is producing confusion when it is introduced into a publicly funded health service.
Finally, it is a belittling view of human nature to think that what matters most to human beings facing life's last mystery is consumer choice, especially of where to die. This view devalues and diminishes what patients, their families and professionals can achieve together.
In conclusion we wish to suggest that an end of life service should have the following characteristics:
1 Realism. It should not claim that it can diagnose, treat and resolve every problem—physical, emotional, social, and spiritual—of patients approaching the ends of their lives, far less those of their families.
2 Fairness. Priority in care should be directed at patients, not at patients and families equally; cost-effectiveness considerations justifiably limit availability of very expensive life-prolonging treatments and ways of delivering care when publicly funded; the scarce resource of specialist palliative care should be allocated according to complexity of patient need, not patient choice; telephone advice from specialist palliative care and educational programmes should be available to all health care professionals.
(p.213) 3 Humanity. Very ill patients should not be subjected to intrusive interviews or ‘assessment tools’. Instead, professionals should listen to patients and be able to converse with them in a friendly manner on the issues of life and death, while working jointly with patients in decisions about their treatment and care. This requires time, maturity of character, and experience rather than course-based training.
4 Adoptability. With realistic and modest characteristics such as these, end of life care of a good quality can be provided equitably in all settings.