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The Last 48 Hours

The old woman sat quietly in the corner of a darkened room watching her son, who lay dying on the bed. He had colon cancer. She had breast cancer. His turn came first. I could not imagine what it was like for her, a dying mother with a dying son. I wondered if she saw a reflection of her own impending death in his. She was peaceful but curious. Perhaps, living herself in death’s shadow, this dying did not seem so alien and her son not so far away. I sat next to her, and we watched together silently. Roger lay deep upon his mattress, but there seemed to be a lightness about his spirit that was new since the day before. His breathing slowed a bit and then sped up. There was a soft, purring sound, somewhat like a cat but not quite the same. When he breathed, his mouth opened slightly. His face was relaxed with eyes half opened. He looked not asleep, not in a coma, not quite here anymore yet not yet gone either.

The word “dying” most commonly reflects an assessment combining perceived inevitability and proximity to death. But what is the process of dying? Physiologically, dying represents a breakdown in the homeostatic (balancing) mechanisms necessary for the continuation of life. Such breakdown can be viewed as happening slowly, as in normal aging, or more rapidly, as in active dying. Psychologically and spiritually, dying similarly reflects a “breakdown” in the individual’s persona, although I would prefer to think of it as a loosening of one’s sense of self as a discrete entity in a particular time and place.

There is a general resistance to thinking deeply about dying, likely reflecting a common fear of the inevitable. This resistance is even to be found among palliative care specialists. Several years ago the prestigious journal JAMA (Journal of the American Medical Association) published a series on end-of-life care. I was honored to be asked to write an article on the last 48 hours of life.¹ At the time I was contacted by the editors, I was struck that this series had been going on for a few years and yet to date no articles had directly discussed dying. Imagine something similar in a series on childbirth in which the process of giving birth was not discussed! Such resistance must be respected. This is no simple oversight. It reflects our collective difficulty in coming to grips with our mortality.^*

In discussing dying I have often invoked the metaphor of a black hole in space. The black hole represents death itself. Death is opaque, like a black hole, absorbing all light. We can all speculate about what goes on within the black hole, but it is ultimately unknowable. Considerable consideration has gone into imagining what might exist on the other side, if there is another side. Similarly, people have long pondered what happens when we die. However, less attention has been paid to the transition into death. Arguably, the most radical aspect of Kübler-Ross’s work was her focus on dying, distinct from death, as suggested in the title of her most famous work, On Death and Dying. As one approaches a black hole (so I’m told), its gravitational force grows until one enters something called the “event horizon.” Apparently, things get really strange in the event horizon. Time and space warp, as one makes the transition into the black hole and one ultimately disappears. That is the best metaphor I’ve found for dying. From afar we may get a glimpse of people as they enter the event horizon of death. But what is it like for those making the journey? I don’t really know, although I’ll find out eventually. My best guess, having observed many making this transition, is that, similarly, things get rather strange. Past, present, and future merge. One’s sense of a separate self blurs, until, eventually, poof!

When people enter the event horizon of death, we call this the “terminal phase” or “active dying.” While this phase can be very powerful and moving for observers, for many dying patients this phase seems almost anticlimactic. They usually enter a dreamlike state and seem to progress peacefully in their dying. Some do have a hard time, and we need to know how to help them. However, it is often the families who struggle the most during this period. Clinicians are also seriously challenged. Few have been taught about active dying. Most lack even basic competencies. We clinicians are humbled before death as it becomes so obvious at a certain point that we are not in charge at all.

Laypeople would be amazed if they knew how little clinicians know about active dying. They mistakenly think, “You see lots of patients die; you must know what this is about.” However, in my experience the greatest lack of clinical knowledge in palliative care exists in this area. Dissecting cadavers in anatomy may teach clinicians about dead bodies, but it teaches nothing about dying. In a study by Merlynn Bergen and myself that examined the experiences of internal medicine residents who rotated onto our hospice ward, interns reported feeling the least knowledgeable about the physical changes of dying.³ I suspect their experience was something like mine as a resident. I was too busy looking at numbers—lab values, vital signs, O₂ saturation monitors, and so on—to pay much attention to how people died. I am not sure that I ever simply sat with a dying patient. My patients either “coded” or were found dead with a DNR status. I do not remember many patients who died. Even now, although I have cared for many dying patients, it is a rare privilege to be able to sit with patients when they actually die. At one level there is a mystery to dying that defies explanation or rational understanding. The closer I am to death, the more aware I am of how little I understand it. Given these limitations, what we can say about active dying can only be told from the very biased perspective of one who is not actively dying. However, we must start somewhere.

Predicting Active Dying

We have learned the most about active dying from following cancer patients, because their dying trajectories tend to be the most predictable. However, patients with other disease processes can certainly enter a pathway largely indistinguishable from that of cancer death. Morita identified four signs that heralded impending death in 100 cancer patients: the “death rattle,” respiration with mandibular movement, cyanosis of the extremities, and lack of radial pulse.⁴ He measured the median time to death from the onset of these signs. They tended to occur in a rather orderly fashion, with the death rattle preceding respiration with mandibular movement (74% of the time), which in turn preceded cyanosis and pulselessness (63% of the time). The median time until death following the death rattle was 23 (±82, SD) hours, 2.5 (±18) hours following respiration with mandibular movement, 1.0 (±11) hours following cyanosis, and 1.0 (±4.2) hours following lack of radial pulse.⁴ (I was struck by this study because until I read about mandibular movement, I had been unable to see it in my dying patients.)

As this study suggests, many patients who are actively dying have “noisy respirations.” These sounds come from retained secretions in the pharynx and the upper respiratory tree. Sometimes called terminal pneumonia, it is unclear how often such secretions represent true bacterial pneumonias instead of retained normal secretions.

This terminal syndrome, as we might call it, is easiest to identify in solid tumor cancer patients and is usually preceded by a bedridden status and little, if any, oral intake of food or fluids. The patient rarely speaks or speaks only in brief phrases. A weak cough may be present initially but then disappears. The respiratory rate is variably increased and often becomes irregular, sometimes with frank Cheyne-Stokes respirations (see below). The stethoscope is of minimal use. The buildup of respiratory secretions in the bronchi and bronchioles makes localization of underlying alveolar involvement, manifested by rales, difficult, if not impossible, to detect. More useful is direct palpation of the chest wall for vibrations that represent the buildup of secretions, a form of fremitus. If such vibrations occur only in the center of the anterior chest over the trachea, this may reflect only tracheal secretions and generate a false-positive finding for active dying. These may subsequently clear if cough returns. However, peripheral fremitus appears to be more suggestive of terminal retained secretions. Fever is often absent, particularly if steroids have been used. The pulse may be strong initially but becomes threadier and eventually will not be palpable as blood pressure falls. Despite a lack of fever, peripheral vasodilatation may occur if there is underlying sepsis. In such cases the pulse initially is rapid and often hyperdynamic, which can be erroneously read as a “strong pulse.” This hyperdynamic pulse, which resembles the “water-hammer” pulse of aortic regurgitation, was recognized in Chinese medicine as a “fake” or false sign of health. Most likely, this pulse results from a widened pulse pressure, because enhanced cardiac output under adrenergic stimulation is accompanied by a fall in systemic vascular resistance, especially if sepsis is present. I have found that feeling the shins for warmth is useful in evaluating for this. Because the shins have poor vascularization and normally are cool (especially in the presence of hypotension with reflexive vasoconstriction), warm shins conversely suggest vasodilatation. (Note that the sensitivity and specificity of these suggested examinations have not yet been tested.)

Although further studies need to be done on the short-term prediction of dying, I have found these signs useful but not infallible. Some patients with obstructive lung disease, those prone to chronic aspiration such as stroke, and dementia patients may rattle with retained respiratory secretions and yet not be actively dying. Cyanosis and mottling of the upper extremities appear more specific for impending death than do such changes in the lower extremities, where they commonly reflect peripheral vascular disease. I have witnessed false positives for mandibular movement in patients who have obstructive lung disease. The exaggerated use of strap muscles in breathing may result in jaw movements that mimic true respiration with mandibular movement. I suspect this sign in dying people results from relaxed muscular tone in the jaw combined with deep breathing. This might explain additional false positives I have seen for this sign in patients with benzodiazepine overdoses and amyotrophic lateral sclerosis (two patients each in my experience), both situations that involve relaxed muscular tone.^†

A common mistake I have made and witnessed in others who work in hospice is to inappropriately extrapolate from cancer to other illnesses in predicting active dying. Most cancer patients do seem to follow a common dying trajectory, and hospice workers become quite good in recognizing when cancer patients enter the active dying phase. Mistakes occur when clinicians excessively extrapolate from this experience to other illnesses. In Chapter 2 I discussed “sine-waving,” a vacillating dying trajectory in which patients with certain illnesses such as congestive heart failure and dementia may deteriorate and then improve—over and over again. For sine-waving trajectories, it is more difficult to state definitively that any given clinical deterioration will, in fact, lead to death.

Clinicians may also fail to predict the deaths of patients for a different reason—the tendency for patients with certain illnesses to die relatively suddenly. Obviously, patients at risk for catastrophic events such as cardiac arrhythmias or exsanguination may die suddenly and unpredictably, although relatively few such patients are followed in hospices. The more common mistake in hospice relates to patients at risk for sudden respiratory failure. Such patients are characterized by a lack of any respiratory reserve. Patients with severe intrinsic lung disease such as obstructive lung disease and pulmonary fibrosis are at risk for this trajectory. Less obviously, those patients who lack respiratory reserve because of neuromuscular disorders such as amyotrophic lateral sclerosis or Guillain–Barré syndrome often die suddenly and unpredictably. My guess is that in such patients who lack respiratory reserve, any pulmonary “insult” such as a mucous plug, food aspiration, bleeding, or early pneumonia is enough to tip the balance toward CO₂ retention and a quick death.

I stress this point because I have generally found it helpful to explain to families (and some patients) the possibility or probability that we may not be able to predict impending death for patients with such illnesses. If, in fact, such a patient is found dead, family shock seems dampened by foreknowledge of this possibility. Although some may be disturbed to learn of the inherent uncertainty in predicting such deaths, many are relieved to learn that active dying will not be drawn out and that most such deaths seem peaceful. Patients who suffer from severe baseline dyspnea, as do most such patients, tend to be more terrified of worsening dyspnea and suffocation than they are of dying. They are often quite relieved to be informed that the active dying phase is likely to be very short—measured in minutes to hours, rather than days.

Symptoms of Active Dying

Many people do fine during active dying. However, certain symptoms may arise that require attention.^4,5,6 In a study of symptoms that occurred in 200 actively dying cancer patients, Lichter found the symptoms shown in Table 12.1.⁷

This study provides a useful checklist for symptoms to consider and some interesting food for thought. It is not surprising that incontinence was present in one-third of patients. The clinician may be surprised at the relatively high incidence of urinary retention. Clinicians may be fooled into thinking that lack of urine output reflects dehydration or renal failure. Palpating the bladder and watching to see if the patient is distressed and reaches for the groin may provide clues to occult retention. Nausea tends to fade in the actively dying. The percentage of confused patients in this study seems remarkably low to me. The considerably higher percentage of restless and agitated patients suggests that altered states are not uncommon in actively dying patients. This begs the question of how one might distinguish “confusion” from “restlessness and agitation.”

Related posts:

Special Therapeutic Issues: Hydration, Nutrition, and Antibiotics in End-of-Life Care Burnout Palliative Care Consults Dying Trajectories and Prognostication Pain Management Chronic Illness, Death, and Dying in Modern Times