To Love Until the End: Preparing for Death with Virtue and Care

Written by Anna Krohn, National Bioethics Convenor

“Told that I would die within five years (in 1977) and having become interested in philosophy, I saw no harm in making the latter my principal interest rather than following a career-orientated path.” So writes Associate Professor Nicholas Tonti-Filippini, with disarming understatement, in the introduction to his timely new book titled: “About Bioethics: Philosophical and Theological Approaches.”

The book itself is a very rare event—a very readable and at times very personal reflection on the pressing “life issues” by one of the most recognizable and active public ethicists in Australia. It is doubly rare, since it represents the thinking of a bioethicist who says: “For me the central concept of Bioethics is respect for every member of the human family” and who has defended and articulated this universal norm in the public square, while making no secret of being “primarily motivated by Christ’s instruction that we should love God and one another.”

Associate Professor Tonti-Filippini’s comments about his life’s work seem to be tossed off with a deceptively wry, yet daring, humour which belongs to those, like him, who face death and chronic suffering and disability each day. The comments also imply the courage and deeply Christian faith that such a shocking medical diagnosis can both challenge and call forth.

At the recent launch of his book in Melbourne, and as part of the Archdiocese of Melbourne Life, Marriage and Family Office’s yearlong campaign ‘To Love to the End’, Dr Tonti-Filippini presented a seminar dedicated to enabling other people to “plan for their future” while facing either terminal illness or the debility of ageing.

During the seminar, Dr Tonti-Filippini, explored some of the major fears and misconceptions which patients, their families and even medical professionals experience during the discussions about the end-of-life.

  1. The Fear of Being a Burden.

The first fear to be exposed was a very common one. In fact, many elderly and sick people cite “the fear of being a burden to others” to be an overriding one. Dr Tonti-Filippini discussed the type of shame and discrimination that such fear creates in people at a very deep level. He suggested that the really destructive fiction was the notion that human beings should all be “totally autonomous people” with the absolutely “controlled lives.” Being “in need” is not, he said, a human “failing” nor is it abnormal. He challenged the audience to think of the positive place of interdependence in human lives and also the way in which “being disabled and needy” gives others around us and society in general the opportunity and stimulus to be “more humane”. In responding to the needs of the sick and ageing, the community itself can become more united and learns to value both itself and those in need of care.

  1. Maintaining Values and Dignity

Despite the fact that we all have times when we “need” the help of others, and despite the fact that our secular liberal society often proposes unrealistic expectations of “person control”, Dr Tonti-Filippini proposed an alternative ethics of “engaged” acceptance and forward planning for disability or death which is both consistent with a “culture of life” and attractive to those concerned about the human dignity and informed consent in the face of future medical treatment.
In Australia, as in other Western societies, there have been a number of methods, both statutory and regulatory, which attempt to preserve a person’s ability to both appoint another person as a representative should they lose competency and to protect the person’s wishes in the event of such events as dementia, unconsciousness or cognitive disability. Dr Tonti-Filippini briefly explained the options of guardianship provisions, the notion of enduring power of attorney and the implementation of so-called “advance directives”.

He pointed out to the audience of over 80 people, that today many hospitals as well as laws in the ACT, South Australia and Queensland propose the legally binding documentation of “advance directives”—the documentation by a person at one point of time of their future medical treatment choices based on the prediction of “outcomes” in the face of degrees of disability or loss of future loss of “quality of life.” 
Dr Tonti-Filippini commented upon some of the practical and ethical difficulties which arise in some of the “advance directives” processes even when these are done in a fully guided and informed way. These difficulties were outlined as legal, practical and philosophical in nature.

The legal status of advance directives is unclear. In three jurisdictions of Australia documented directives are legally binding while in others (such as Victoria), they are not. Where they are legally binding, the legal difficulties include doubt about the application of such a directive because it is very likely that what the patient envisaged months or even years before signing the directive document may not correspond in detail or completeness with the later actual situation. This causes great difficulties for the patient’s family, the carers, and for medical and nursing personnel. The directive may include an instruction that is no longer in the best interests of the patient, or is impossible to achieve or may no longer correspond with the probable wishes of the patient.

Some advance directives assert that it is a patient’s “quality of life” that is the outcome in the balance rather than promoting a discernment of the proportionate benefit or harm of a particular treatment option. This tends to divert attention to a more utilitarian and yet vague attitude to the human capacity for adaptability and virtue in the face of suffering.

By contrast with these implicit modes of thinking and the very real legal difficulties connected with advance directives, Dr Tonti-Filippini proposed a more palliative, flexible and holistic approach, entailed under what is a “future planning” ethos.
The philosophy of “future planning” promotes a more community and family engaged statement of wishes and values—documented by the patient—in order to guide those entrusted with advocating for him or her, while allowing for unexpected medical outcomes and contexts. The “future planning” approach assumes that the person’s life, no matter how disabled, requires appropriate and competent care but does also allow for appropriate withdrawal of treatment where it is burdensome or futile. Dr Tonti-Filippini suggested that documentation of these aspects of a patient’s wishes can offer a rich, reassuring and fulfilling way for them to plan for disability and a “good death” while helping them to grow spiritually and personally. It enables those facing ageing and death to pro-actively reflect upon and engage the values which are most important to them.

Associate Professor Nicholas Tonti-Filippini’s new book, “About Bioethics: Philosophical and Theological Approaches”, can be ordered online at Connor Court Publishing  or by calling them on (03) 9005 9167.

Author: CWLA

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