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Enhancing Life Near Death: A Q&A with Dr. Daniel P. Sulmasy

When Can We Say That Someone Is Dying?

September 22, 2016 • By Daniel P. Sulmasy When Can We Say That Someone Is Dying?

Can life be enhanced even as it is ending? While it might seem counterintuitive, the answer is emphatically “yes.” Everything that lives, dies. While death is no part of life, dying is intrinsic to the phenomenon of life. Therefore, if life, considered in its entirety, is to be enhanced, dying must also be enhanced.

Perhaps the first task for one who sets out to enhance the life of the dying is to propose a means by which one can designate a living thing to be dying.

Some might say that that the process of dying begins at the first moment of a living being’s existence. This is metaphysically true, and my project’s title, “Now and at the Hour of Our Death,” is meant to invoke that truth and to offer an avenue for exploring the experiential, moral, and spiritual aspects of dying. From a practical perspective, however, it helps to parse out a living being’s dissolution into phases that can help us understand dying and how to help the dying to flourish.

For primate mammals, like human beings, it is typical to divide the lifespan into multiple phases—conception, antenatal development, birth, infancy, childhood, adolescence, young adulthood, middle age, senescence, and death.

Such a simple phase-sorting process, however, despite its physical and psychological richness, is inadequate for analyzing the concept of death. Sometimes, for instance, death intervenes early in this developmental trajectory. Most often, however, in contemporary Western nations, death occurs as the inevitable resolution of a prolonged process of chronic illness and disability, generally beginning after middle age. In the past century, Western medicine has succeeded in turning what once were lethal conditions, such as metastatic breast cancer or diabetes, into chronic conditions with which patients live for many years. My project considers these sorts of dyings as the paradigmatic case for analysis—notwithstanding the realization that the dying of those who leave this life quickly could also be enhanced.

Still, even considering those paradigmatic cases of older persons suffering from diseases such as metastatic breast cancer, Alzheimer’s disease, or congestive heart failure, when is one justified in saying that the person is dying? This itself is not an easy question to answer. Statutory definitions of “terminal illness” frequently stipulate that the individual’s life expectancy must be six months or less. Roughly speaking, this is not a bad definition. It is known, however, that physicians are very poor at making such prognostic estimates. Moreover, persons who have six months to live may enjoy a very good quality of life. Free of pain or other distressing symptoms, they may be able to work, travel, mow the lawn—in other words, their lives may not differ greatly from the week before they were designated as terminally ill. Are they dying? And are their lives in need of the enhancement that one imagines in using the phrase, “enhancing the life of the dying?”

Perhaps, then, dying should be considered a purely subjective state—one is really only dying when one considers oneself to be dying. This might help separate the dying from those who expect to go on living, but it will not resolve all of our problems and puzzles. As the psychiatrist Elisabeth Kübler-Ross pointed out decades ago, denial is a common defense mechanism for the dying. All too often, the person who is dying cannot subjectively appreciate the death that is objectively imminent and obvious to everyone else. This is denial. The fact that we can make such judgments already presupposes that dying is not subjective.

The word “dying” can be disambiguated, however, if one understands that dying, like life, can be parsed into phases. Just as there are phases of life, so there are phases of death, and I identify seven senses or phases of dying.  

Metaphysical dying is present in every moment of life, based on the understanding that life is finite. This is the sense in which we all must acknowledge that we are dying.

Functional dying describes the various permanent losses or failures of development of those capacities that characterize us as members of a particular biological natural kind. Some cannot be reversed by means of medical technology: these are permanent disabilities such as cerebral palsy or the loss of a finger in an accident or the loss of function of a part of the brain after a stroke. Medicine can reverse some functional losses; in such cases, we say that medicine has cured the person. In many other cases, however, medicine can ameliorate but not fully reverse these functional losses, thereby forestalling complete functional death. Except for continuous or repeated medical intervention, the function would be lost permanently. Yet medical intervention partially restores function and prevents its permanent loss. In these cases we say that medicine is managing a chronic disease. Examples include giving antiretroviral drugs that control but do not eliminate HIV infection, or performing hemodialysis to substitute for the loss of kidney function in a patient with end-stage renal disease.

Matters quickly become complicated, however, because some functional dyings portend inexorable dying and eventual empirical death. If the function that is lost but partially restored by medicine is critical, and the loss is expected to progress despite medical intervention, then one can be said to be dying inevitably of that underlying condition.

By inevitable dying I mean that certain functional deaths can be described as chronic, disabling, and eventually fatal conditions. Thus, a person can be said to be dying of chronic, obstructive pulmonary disease (COPD or emphysema) once it is determined to be chronic and disabling, and will result, eventually, in that person’s empirical death.  This person can be anticipated to live for many years, and the path towards death will vary according to the condition and the individual, but he or she will inexorably die of this disorder unless other events intervene.

By empirical death I mean simply the fact that an individual permanently has ceased to exist as a unified biological organism of a particular natural kind, such as the human. Currently, we have two empirical means of determining such empirical deaths for human beings.  Once the heart and lung cease functioning, or once the brain ceases functioning, we declare that person dead.  All human beings will undergo an empirical death.

But while someone can be said to be dying inexorably of a chronic disease, there comes a point, often well before empirical death, at which one can say that the person is now dying in an involutional sense. This means the person has entered a phase in which the trajectory towards death is clear, and can be anticipated in a matter of a few months or even weeks.  Such persons, for instance, begin to lose weight. Symptom burdens increase. They can still carry out the activities of daily living, but may now need assistance. It has become clear that things will only get worse. The tide, so to speak, has turned.

Imminent death describes that point at which it becomes evident that death will ensue in days or weeks.  Colloquially, one sees that the body is “shutting down.” Some palliative care doctors refer to this as “pre-active” dying.

Whether one has reached the end stages of a chronic, debilitating, and eventually fatal disease, or one is dying suddenly of a disease or injury, everyone passes through an active phase of dying. Here, empirical death will be expected to take place within minutes or hours. Such persons are often unconscious, their pulses thready, their breathing labored. This is the time that, when the death has been anticipated, loved ones keep vigil around the deathbed. Empirical death ensues promptly.

Like Kübler-Ross ’s stages of dying, these stages are not to be interpreted rigidly. Different diseases take patients on different trajectories through these stages. Only in certain conditions will these phases follow a classical sequence. This much can be said: we are all metaphysically dying, and we all experience certain functional deaths across the span of life. Many of us will develop partially ameliorated functional deaths—certain chronic, disabling, eventually fatal conditions that will progress from an inevitable to an involutional to an imminent phase of dying. Whether suddenly, or at the end of a chronic condition, everyone will experience an active phase of dying (of variable duration) and everyone will undergo an empirical death. The strengths of parsing dying into these stages are that they are relevant across different classes of disease, they clarify what we might mean when we talk of care for the dying, and they connect death to all phases of life, so that the sharp distinction between the living and the dying loses much of its prejudicial force.

These seven phases of dying are primarily biomedical characterizations, but for human beings each carries with it a unique set of psychological, social, cultural, and spiritual dimensions as well.  These stages of dying are meant to complement, not to supplant, the psychological processes described by such cogent observers as Kübler-Ross. It is important to note, further, that the moral duties of patients are also modulated by these stages of dying, as are the moral duties of families and health care professionals towards the dying. The spiritual struggles of patients are also particular to these phases. For instance, hope will likely have a different meaning for the involutionally dying than it does for the imminently dying.

All persons are dying in a metaphysical sense. Almost all persons (except, perhaps, those dying in infancy) will experience one or more functional deaths.  Chronic, debilitating, eventually fatal diseases affect an increasing number of persons in the developed world. All persons, of course, die in an empirical sense; this is the ultimate terminus of human physical finitude, played out over the entirety of each person’s lifespan.

If life is to be enhanced in any sense, it must always be enhanced in light of the reality of death. If human beings are to flourish as the kinds of things that they are, then the next question is to ask what conditions can best enable this flourishing to occur over the entire course of human living and dying. My project is directed toward this question.