Death had long been a communal event. Over time, however, it became increasingly private. During the 1960s, death was not something to be talked about and if, only “in a polite, euphemistic, hushed manner” (Green
2008, p. 3). Deceit of the terminally ill regarding their prognoses was thought to be a kindness, accentuated by families and health care providers alike. British anthropologist Geoffrey Gorer famously asserted that the absence of public mourning and the prudence surrounding the topic had generated a “pornography of death” (Gorer 1965 as cd. in Green
2008, p. 4). Death and the whole dying process, once perceived as a natural, inevitable part of life, had turned into something embarrassing that needed to be hidden.
The palliative good death ideal
The original hospice movement redefined death as a natural part of life and rejected irrational attempts to either deny or defeat mortality. Instead, endeavors to accept and talk about death, both on the individual as well as the societal level, were actively encouraged. Dying was depicted as “the last great opportunity for ‘growth,’ a time of personal transformation, even triumph” (Green
2008, p. 3), providing “a chance to discover life’s true meaning” (Kübler-Ross
1975, back cover). Even intense suffering and existential fear could be positively reinterpreted as parts of this transformative process.
Even though Kübler-Ross stressed that her phase model was not to be read as a universal recipe, her work was later interpreted in exactly that way. It was inferred that palliative patients
necessarily needed to travel through all five stages of grief (denial, anger, bargaining, depression and acceptance) in order to die well. The resulting rigid good death ideal has been criticized from different angles, most notably for implementing a socially and culturally powerful script ‘how to die properly’ and thus pressuring patients into “dying according to what the healthcare professionals consider to be a ‘good death’” (Cottrell and Duggleby
2016, p. 707).
On the one hand, modern palliative care has certainly outgrown this authoritative model by acknowledging the “multiplicity of beliefs and communication patterns evident in the collective of dying patients” (McNamara
2004, p. 936). Palliative care follows an entirely individual as well as holistic care approach, providing medical, emotional as well as spiritual support for all people involved in the dying process, e.g., the patients, their families and caregivers, tailored to their specific needs. Its focus lies on the enhancement of quality of life and on enabling patients to “live as actively as possible until death” (Sepúlveda et al.
2002, p. 94). On the other hand, a certain view of a good death, rooted in the original hospice movement, continues to be held. It will be called the
palliative good death ideal here and hereafter, even though we wish to stress that it is, of course, neither the sole good death ideal within palliative care, nor shared universally by
all palliative care providers in Europe.
4 In our depiction, we will refer to Radbruch et al. (
2016). It makes no explicit mention of the view we wish to describe, as the authors are not concerned with good death ideals underlying the palliative care philosophy in this article. Yet, they exemplify an influential critical attitude against euthanasia from a palliative care perspective by referring, among others, to the WHO-definition, according to which death should neither be hastened nor postponed. The article by Radbruch et al. (
2016) thus has the purpose of drawing attention to rather than being taken as a reference for a certain position.
The ideal’s close proximity to the original hospice movement becomes particularly clear in its endeavors to dissociate from euthanasia
5 movements. Two aspects are of particular importance for our purpose. First, palliative care is said to be life-affirming, because it strongly believes that “even in a patient’s most miserable moments, sensitive communication, based on trust and partnership, can improve the situation and change views that his or her life is worth living” (Radbruch et al.
2016, p. 114).
6 This is at least compatible with the observation that “[p]alliative care providers […] sometimes seem to claim that patients who think that their life is irretrievably bad and ‘worth not living ‘ are always wrong. A patient may accurately judge their current quality of life to be unacceptable, but adequate care would always increase their quality of life to the point where they would reconsider” (Hurst and Mauron
2006, p. 108).
The second aspect concerns the palliative good death ideal’s emphasis on ‘natural’, non-induced death. Through its efforts to retain the life-affirmative character of medicine but simultaneously regard dying “as a normal process”, “neither to [be] hasten[ed] or postpone[d]” (Sepúlveda et al.
2002, p. 94), good dying from a palliative care perspective also requires modesty, both from the health care team and the patient.
7 The health care team must not unnecessarily interfere with the dying process by intentionally prolonging or shortening it, and the patient is to submit to the end of life by neither resigning too early nor desperately clinging to life too long. This implies a right point in time for death to occur, that should not (or cannot) be externally determined, neither by the physician nor, importantly, by the patient herself. It is crucial to recognize that this prima facie applies to all patients, therefore, irrespective of their individual views of a good death or their status as (in)competent decision-makers, (non-)autonomous beings etc. There must be something, from this point of view, which makes non-induced death preferable
in principle to an induced death, therefore.
One way to do so is to hold onto the view of dying’s transformative potential. The position of death’s transformative potential traces back to the beginnings of the hospice movement (and beyond) and is advocated today in modern variants. Steffen-Bürgi even goes as far as to state that it is the ultimate goal of palliative care to assist in perceiving the possibilities for personal development and inner maturation (Steffen-Bürgi
2009, p. 274). Egan City & Labyack, in describing hospice palliative care for the twenty-first century, express their strong belief that dying represents opportunities for growth and development, while emphasizing that the question how exactly this time is to be designed is up to the patients and their families. They write:
Although the last phase of life and relationship is a difficult time, with sensitive support it can be a time of tremendous growth and opportunity for the person who is dying and for loved ones – such as in the finding of meaning and purpose in one’s suffering, the value of one’s life accomplishments, the deepening of relationships, and the personal spiritual significance of the experience. (Egan City and Labyak
2010, p. 57f).
8
Swiss palliative care providers in a recently conducted qualitative interview study expressed their belief that death can be an opportunity for personal growth, following Elisabeth Kübler-Ross (Mezger
2018; see also Lüddeckens et al.
2016 for a report of the project).
Zimmermann et al. (
2019) accordingly concludes that one understanding of death within today’s palliative care regards death as an inherent part of life, which is usually linked to a rejection of euthanasia among the respondents. Zimmermann emphasizes that religious convictions and a certain understanding of dignity associated with them play a decisive role (Zimmermann et al.
2019, p. 180). There are also more recent interpretations of a transformative good death ideal that incorporate ideas from existential philosophy and psychology (Renz et al.
2013; Schnell
2019). Accordingly, some authors prefer to speak of alternative religious beliefs because the ideas and practices associated with them do not stand in a narrower framework of traditional faith communities and traditions (Lüddeckens et al.
2016, p. 2). The research group around these authors asserts in their project report that alternative religiosity is found among patients themselves, but also among palliative care providers. Particularly relevant, according to the authors, is the concept of the ideal of personal development toward a higher self. This also shows in a critical to negative attitude toward palliative sedation (Lüddeckens et al.
2016, p. 4f).
It remains speculative how widespread this position is among European palliative care providers, but it is neither a negligible position nor is it exclusively attributable to personal rather than professional attitudes. A palliative nurse might strongly believe that a patient would die much ‘better’ if he shared a certain view of growth on death and dying and even argue for a change of society’s views on these matters, while still respecting the patient’s values and do everything to fulfill his wishes, in line with the palliative care approach. This is no contradiction.
The euthanasia good death ideal
Similar to Saunders and Kübler-Ross, the pioneers of the euthanasia or right to die movement took offense at an overly technical, paternalistic medical system and strived to ensure a dignified death. With regard to how death should ideally occur, they came to very different conclusions, however.
The palliative good death ideal acts on the assumption that a patient’s dignity and quality of life can be preserved right until death. Helping dispirited patients in recognizing the value of their remaining lives has been described as one of the main goals of palliative care. Right to die organizations, in contrast, regard a patient’s own judgment ceteris paribus as
will that must be taken seriously. The individual alone defines at which point her life has or will become meaningless or unbearable and when the time is ripe to die a good, still dignified death. According to this ideal, self-determination is extended from the circumstances of the dying process to the time of death itself. The World Federation of Right to Die Societies believes accordingly that “all those who fully appreciate the consequences of carrying out their wish to die and who take into account the reasonable interests of others should have access to a peaceful death at the time of their choice” (WFRtDS
2019).
It is crucial to recognize that a voluntary (de)termination of death is not applicable to all patients, but only to those with the ability to make informed and autonomous choices in the first place. A shortening of the dying process would be regarded as beneficial to many other patients as well, from the perspective of at least some euthanasia advocates. The Netherlands, for instance, do not only acknowledge voluntary euthanasia requests but also practice non-voluntary euthanasia in pediatrics.
In light of this, it may be argued that a ‘natural’, non-induced death could become undesirable for many, especially—but not exclusively—for non-religious or non-spiritual people. Actively inviting death can be interpreted as a denial of the dying process. Cottrell and Duggleby (
2016) even go as far as to claim that this preference can be observed on a societal level:
The dying process seems to have been rendered insignificant and has therefore been discarded. Though death itself is openly discussed, the dying process is so negatively characterized or perceived that it is now avoided entirely. Contemporary Western society, once a death-denying society, is now increasingly a death-accepting, but a dying-denying, society. (Cottrell & Duggleby
2016, p. 710)
In concert with this suggestion, the acceptance of euthanasia and PAS has continued to increase since the 1980s and is currently high among the general public in Western European countries (Cohen et al.
2013). Corresponding laws have been passed since then in European countries, Australia and North America. This trend is commonly interpreted as a sign that “euthanasia will eventually become legal” (Cohen et al.
2013, p. 380) in a growing number of Western countries (but see Radbruch et al.
2016 for an alternative reading).