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

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

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

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

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 anothers death.

Quality of Life Positive connotations, for example, in rehabilitation, cosmetic treatments, psychiatry, and psychology

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 patients life but to end it

Quality of Life This phrase often serves to justify the termination of life A subjective concept, meaning that ones quality of life is determined by ones personal life circumstances

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

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

Terminal Patients The doctors 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:

Terminal Patients Not only that death is near, but also that the medical staff are giving up, The patients 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

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

First, a treatment that does not produce positive effects

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

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

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

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

Double Effect Two basic presuppositions: (1) the doctors motivation is to alleviate suffering (2) the treatment must be proportional to the illness Motivation and proportion are difficult to ascertain

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

Palliative Sedation Terminal sedation does not require patients 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):

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.

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?

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.

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

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

Thank you