Terminal Terminology: Medical Language at the End of Life

1. Terminal Terminology: Medical Language at the End of Life Raphael Cohen-Almagor

2. Every Profession Has Its Keywords That Are Important to Help Categorize Phenomena, Save Time and Provide a Framework for Working Together.

3. The Thesis: The Keywords Primarily Serve the Physicians, at Times at the Expense of the Patients’ Best Interests.

4. Death With Dignity • To have dignity means to look at oneself with self-respect, with some sort of satisfaction.

5. Death With Dignity • People who feel they lost their sense of dignity may opt for death. • One thing, when this is a voluntary request on part of the patient. • Quite another, when someone else asks for another’s death.

6. ‘Quality of Life’ • Positive connotations, for example, in rehabilitation, cosmetic treatments, psychiatry, and psychology

7. Quality of Life • However, when dealing with end of life issues, ethicists who support euthanasia use the term ‘quality of life’ in a negative sense more often than in a positive one, meaning that they do not seek to improve the patient’s life but to end it

8. Quality of Life • This phrase often serves to justify the termination of life • A subjective concept, meaning that one’s quality of life is determined by one’s personal life circumstances

9. Patients in ‘Persistent Vegetative State’ • Prolonged unawareness and post-coma unawareness (PCU) • The term ‘vegetative’ dehumanizes patients and therefore is offensive to patients and their beloved people

10. ‘Persistent Vegetative State’ • We should strive to describe the condition without offending patients or their beloved people • We should not strip patients of their human and moral characteristics

11. ‘Terminal’ Patients • The doctor’s task is to help patients to live when they want to continue living, not to hold a clock over their heads and count their days • When patients are labeled ‘terminal,’ doctors send them several simultaneous negative messages:

12. ‘Terminal’ Patients • Not only that death is near, but also that the medical staff are giving up, • The patient’s beloved people should begin the mourning period while the patient is still alive • A difference exists between discussions among medical staff, and discussions that involve the patients and their beloved people

13. ‘Futility’ • Means any effort to provide a benefit to a patient that is highly likely to fail and whose rare exceptions cannot be systematically produced

14. First, a treatment that does not produce positive effects

15. Second, it is futile to provide a radical treatment whose side-effects outweigh the good emerging from the treatment

16. Third, it is futile to treat a disease when the patient is suffering from another life-threatening disease

17. ‘Futility’ • Concerns about costs often underlie the appeals to futility in the clinical setting and public policy discussions • In public policy, the concept of futility can sanction restrictions in the allocation of health care resources

18. ‘Futility’ • The problem is that physicians disagree about the type of clinical evidence necessary to justify a futility claim • What is required is a fair process approach for determining and subsequently withholding or withdrawing, what is felt to be futile care

19. ‘Double Effect’ Two basic presuppositions: • (1) the doctor’s motivation is to alleviate suffering • (2) the treatment must be proportional to the illness • Motivation and proportion are difficult to ascertain

20. ‘Double Effect’ • The rule takes hold in the absence of law. • It may not be a necessary means to adequate pain relief because informed consent, the degree of suffering, and the absence of less harmful alternatives may suffice

21. Palliative Sedation • Terminal sedation does not require patient’s consent. • The fear of abuse is great. • Experts told me that terminal sedation happens frequently in ICUs. Physicians conceive the practice as the middle approach between euthanasia and withholding treatment. • It is estimated that 8% of all death cases in Belgium in 2001 were cases of terminal sedation, about 4,500 cases in Flanders alone.* • * Johan Bilsen, Robert Vander Stichele, Bert Broeckaert et al., “Changes in Medical End-of-Life Practices during the Legalization Process of Euthanasia in Belgium”, Social Science and Medicine, Vol. 65, Issue 4 (2007): 803-808.

22. Palliative Sedation • There is no knowledge whether the patient's consent was sought or given. • At present the Dutch and Belgian physicians do not have clear directives on this. • There is no legal regulation, no public or professional scrutiny to examine to what extent the procedure is careful, and there is no knowledge whether consultation was provided • This situation calls for a change. There should be clear guidelines when it is appropriate, if at all, to resort to this practice.

23. ‘Brain Death’ • 1) when should life support be withdrawn for the benefit of the patient? • 2) when should life support be withdrawn for the benefit of society? • 3) when is a patient ready to be cremated or buried? • 4) when is it permissible to remove organs from a patient for transplantation?

24. ‘Brain Death’ • there is a significant disparity between the standard tests used to make the diagnosis of brain death and the criterion these tests are purported to fulfill. • Need to insist on “Whole-brain” death.

25. Conclusions • A need to introduce more ethics into the medical school curriculum, equipping the medical staff with communication skills • A need to invest more time talking with patients and their beloved people

26. Conclusions • Clean the language and clarify it sincerely • Use elaborate explanations instead of concise, obscure or unethical terms • Improve Doctor-Patient Communication • Clear law instead of grey areas

27. Thank you