Caring for the Dying: From a "Negative" to a "Positive" Legal Right to Die at Home

Article excerpt

The choice of the old and terminally ill to die at home has been the subject of various types of research. However, one of the aspects of this subject, which has been investigated very little, is its legal context. The absence of such legal research is contrasted by the vast amount of academic writing on the legal aspects of the right to die with dignity and euthanasia. The object of this article is to analyze and break down the "right to die at home" into its different legal components. This legal analysis will be based on Professor Isaiah Berlin's definition of two different concepts of liberty: negative and positive freedoms. The main conclusion from the legal analysis presented in this article is that it is important to understand that at the legal level the right to die at home is dependent on many different elements. These elements may be classed in two basic categories: negative and positive freedoms and rights. Even though the former is a necessary condition of the latter, without the latter the first remains purely theoretical for many old people.

Keywords: right to die at home; elder law; seniors' rights

The changes that have taken place during the past centuries in the physical location of the death of the sick and the aged reflect much broader social and political changes. Until the beginning of modern medicine, most of the human race died at home. Death was an integral part of the course of life, and it took place between the walls of the person's home, in the natural family environment (Aries, 1981, 1983).

A full range of developments, such as industrialization, urbanization, and the rise of modern technology and medicine, brought death out of the home and relocated it within the walls of institutions. The home, the place in which "normal" life is lived, became a space inappropriate to death. At the height of the phenomenon of "the institutionalization of death," the vast majority of deaths took place in hospitals or other institutional frameworks (Hockey, 1990; Illich, 1979).

The pendulum has begun to swing back only in the past few decades as part of the deinstitutionalization movement. One of the aims of the deinstitutionalization movement has been not only to encourage old people to live in their own homes, but also to allow them to die there. One of the more prominent expressions of this trend has been in the hospice movement (Saunders & Baines, 1989; Schneider, Adler, & Gotsch, 1986). The combination of the deinstitutionalization and the hospice movements has led to growing recognition of the right to die at home. As a result, in current times and at least in North America, there has been a certain tendency for death to be returned to its natural place: the home (Facts on Dying, 2004; Germino, 2003). This development fitted well the broader recognition of the right of old people to receive long-term care in their own home and community and to "age in place" (Rao, Anderson, & Smith, 2002).

Up to now, the choice of the old and terminally ill to die at home has been the subject of various types of research. However, one of the aspects of this subject that has been investigated very little is its legal context. The absence of such legal research is contrasted by the vast amount of academic writing on the legal aspects of the right to die with dignity and euthanasia.

The object of this article is to analyze and break down the "right to die at home" into its different legal components. This legal analysis will be based on Professor Isaiah Berlin's definition of two different concepts of liberty. In his well-known book Four Essays on Liberty (1969), Professor Berlin emphasized the difference between two concepts: negative and positive freedoms. Negative freedom is the right not to be interfered with. The duty imposed on the state and on other individuals is a passive one. Positive freedom is the right of the individual to be able to be "his own master." This "positive" liberty places the duty on the state actively to provide and support the abilities of individuals to fulfill themselves. …