No Place For Dying

Hospitals and the Ideology of Rescue

Helen Stanton Chapple

• Publisher: Routledge
• Year: 2016
• Print ISBN: 9781598744033
• eBook ISBN: 9781315423432
• Topic: Social Sciences
• Subtopic: Anthropology
• Index: Social Sciences

The U.S. hospital embodies society's hope for itself—a technological bastion standing between us and death. What does the gold standard of rescue, as ideology and industry, mean for the dying patient in the hospital and for the status of dying in American culture? This book shows how dying is a management problem for hospitals, occupying space but few billable encounters and of little interest to medical practice or quality control. An anthropologist and bioethicist with two decades of professional nursing experience, Helen Chapple goes beyond current work on hospital care to present fine-grained accounts of the clinicians, patients, and families who navigate this uncharted, untidy, and unpredictable territory between the highly choreographed project of rescue and the clinical culmination of death. This book and its important social and policy implications make key contributions to the social science of medicine, nursing, hospital administration, and health care delivery fields.

25CHAPTER 1

Hospital Dying Situations

When hospital clinicians care for dying patients, they are often on their own, practicing with few or no specific guidelines in a way that typifies virtually no other hospital clinical practice. The move toward standardizing most of the care of patients in hospitals has deep roots. Near the beginning of the twentieth century, hospitals in the United States insisted that all patients have standardized medical records. One consequence of this standardization was that patients perceived to be from lower classes (people of color, immigrants, the poor and indigent) benefited from this more democratic treatment. Physicians treating well-to-do patients had to open their private notebooks, so that patient care methods used for the wealthy and powerful became accessible to clinicians and accountants (Timmermans and Berg 2003).

Using the critical task of documentation to manifest both equal opportunity and presumed transparency helped make it possible for U.S. hospitals to become demonstration projects for societal ideals. Medicine was a social good, and medical records, as tools of research, reimbursement, communication, and accountability, could advance that good. Standardization promoted goals of both science and efficiency in hospitals; it could reinforce the expectation that scientific advancement could be translated into ever improving health-care quality.

These progressive ideals, even elaborated and contested over time, have remained alive and well in the U.S. hospital. Quality improvement efforts, policies that make cardiopulmonary resuscitation the default for every hospitalized patient, and the movement toward evidence-based medicine are all grounded in the belief that practice should be guided by and informed by standards. Every life-saving intervention practiced in hospitals has a protocol to guide its proper implementation. Clinicians proclaim their belief that 26practice must be guided by what is best for the patient, therefore general standards must be modifiable based on individual cases. Still, the standards are the starting place; they are what stamps health-care practice as legitimate and professional.

Delivering health-care according to set standards has served hospitals well as the means for holding back death have become ever more elaborate. Because compliance to practice protocols pervades clinical practice in U.S. hospitals, standards can serve as useful lenses to begin exploring how dying occurs there. Hospitals produce more time alive as their most valued commodity, and mortality rates are one measure of their success. If the hospitalized patient is officially recognized as dying, however, he is no longer a candidate for life-saving. To be disqualified from rescue may place the patient not only beyond the reach of that paradigm but also beyond the standards themselves.¹ Further, because rescue care is much more closely tied to reimbursement than nonrescue care (see Chapter 5), care for patients who are dying may be documented less rigorously and is rarely subject to review. What might this change in status mean for the patient, and how does it come to be?

Implications for dying and “Dying”

Subsequent chapters answer this question by examining the development of hospitals as both culture and industry. In this chapter, I explore what the dominant standard of rescue and the experience of being disqualified from rescue mean for the dying patient. First, I show that in the U.S. hospital, Dying patients who are officially recognized as such (thus written with a capital D) and are not under hospice or palliative care almost always occupy a devalued social position compared to non-Dying patients. Because acute care in the United States is thought to be an egalitarian endeavor with standards of excellence applicable to every patient, to move a patient beyond the reach of those standards, to label the patient as officially Dying, is an act of delegimization. Changing the patient’s code status from “full code” (the default mode and often simply assumed) to “no code” or “Do Not Resuscitate” (DNR) (which requires clear articulation) is an example of this practice. As such, it requires ritual behavior to exonerate it, as we shall see. Once delegitimization has been accomplished, the patient and her caregivers are often completely at sea. To extend the analogy, uncontrolled wetness itself is an anathema (as every clinician knows), a signal of insidious disorder. The journey that had been clinically mapped toward stability and cure is now adrift, buffeted by circumstance, pulled 27under by hospital currents, navigated by arbitrary preference, and often beyond the reach of tracking, accountability, standardization, and quality. Most persons want to get back on dry land as soon as possible, to feel sure-footed and in control.

To become acquainted with the diverse dying situations occurring in hospitals is to discover dying to be a very slippery category, difficult to grasp. (I prefer the term “situation” to “process” because it gathers in persons beyond the central individual and because what is happening may not be at all linear or orderly [Kastenbaum 1978].) The persons who populate dying situations slide in and out of the hospital’s focus, which is fixed on regulations, outcomes, and bottom lines. In the hospital, to be legitimate means being under the aegis of care standards, governed by some form of oversight or quality control. Because dying does not fit with the expectation of clinical spaces being devoted to improving health and saving lives, it is minimized when it occurs in those spaces, or it is swept beyond view into palliative care. The hospital reflects a broad-based consensus that dying (when clearly occurring) is supposed to be a private matter, properly left to families and not a matter of public or social concern. This attitude reflects the priorities of the larger society, and why would it not? The U.S. hospital embodies the most highly realized incarnation of the society’s hopes for itself: a technological bastion standing between itself and death.

Just as every life is unique, every dying situation tells a story different from any other. The five situations of dying in this chapter fixed on the imaginary slide for our inspection serve as orientation to perplexities explored in later chapters. Mr. Diangelo² and Mrs. Harper, the first two cases, were patients in the Catholic community hospital. The next two patients, Mr. Gomez and Ms. Hunter, died in the teaching hospital.

Case One: Mr. Diangelo

Mr. Diangelo’s longstanding lung problems made it surprising that he survived to see his 90s. He had been in and out of the hospital recently, and he was alert and responsive when he was admitted a week before. Details of his clinical course were not available, but during this admission a decision had been made to write a DNR (or “no code”) order for him.³

During what would be the last weekend of his life, Mr. Diangelo was in a stepdown⁴ unit so that his cardiac status could be monitored. On Saturday, his breathing became more labored, and the staff tried several interventions to assist him with varying success.

28RN: He was on 6 liters nasal cannula plus a fifty percent face tent, and when I went in to check him, he was not doing well. His sats were 50 percent⁵—I mean he was BLUE. It had happened before at midnight, and the face tent was added then. [Now] We went up to 75 percent face tent. That didn’t do the job for him. So we paged respiratory and we talked about putting him on a nonbreather.⁶ The fact was he was blue. We had to do something. The nonrebreather and the nasal cannula seemed to help. He did good with that through the day. Then Saturday later in the day he was in trouble again. The house doctor came up. The respiratory doctor was called. We put him on the BiPAP⁷—that worked. He seemed okay when the family was there.

Mr. Diangelo’s requirements for oxygen and breathing support had moved from simple (nasal cannula alone) to just short of intubation⁸ (BiPAP) over the space of a few hours. During that time he suffered several bouts of severe respiratory distress, and in each case the staff stepped up his oxygen support. This final step involved putting a mask over his nose and mouth arranged to create a very tight seal so that the machine’s oxygen would go into his lungs without escaping out the sides. BiPAP is considered a temporary measure because of its discomfort, the patient’s inability to eat or talk, and the dry mucous membranes it causes.

RN: On Sunday he was more awake, pulling the BiPAP off, even talking some. The problem was, I had four patients. I could not sit at the bedside. So every time it got dislodged, his oxygen saturation dropped. The family requested wrist restraints. So we did that. Sunday afternoon he could dislocate the mask by turning his head or moving down in the bed. When he started pulling that BiPAP off Sunday afternoon, we were constantly in there. I called the admitting doctor and he wasn’t on call. The covering doctor—they didn’t know him. He said he would call the one who saw him Sunday morning. I asked the doctor, “Do you want to put him in the unit?” “No—he’s a no code. They don’t want to intubate,” so that was it. He would order Dilaudid.⁹ We were afraid it would wipe out his respiratory drive. But I gave him some before I left, and it did fine for him. He was able to rest and didn’t fight the mask.

On Monday, the respiratory doctor came in. That’s when they decided it was okay for him coming off the BiPAP. They were ready. They were prepared.

29HC: That was three doctors?

RN: Four doctors in all.

Having benefited from improved oxygenation overnight, Mr. Diangelo was more alert on Sunday morning, more aware of the mask and its discomfort, making the BiPAP a double-edged sword. Recognizing that Mr. Diangelo’s increasing struggle against the mask was an unsolvable management problem, the nurse suggested an alternative plan of care: that the physician write an order to move him into the ICU. Staffing issues alone are rarely enough to buy an ICU bed, and this physician immediately rejected this idea along with the unspoken option that would do the trick: the invasive procedure of intubation and mechanical ventilation. His reason, as reported by the nurse, is telling. Rather than pointing out that Mr. Diangelo’s need for more and more oxygen indicated that he was dying, or that intubation would not solve the problem, the doctor cited Mr. Diangelo’s status: he was a no code—he was no longer a candidate for rescue care. The nurse’s response is also revealing: “so that was it.”

Elaboration regarding other possible options for caring for Mr. Diangelo seemed unlikely. Mr. Diangelo’s no code status itself seemed to be the extent of his plan of care, although I heard the maxim elsewhere in this hospital that “‘no code’ doesn’t mean ‘no care.’” Now the plan dictated that the nurses cope with Mr. Diangelo’s struggles to remove the mask and the staff’s attempts to replace it or restrain his movements. The order for the medication that allowed him to rest had come well into the second twenty-four hours of Mr. Diangelo’s respiratory difficulty. This measure initially presented a problem for his nurse, who was reluctant to do it in case it compromised his breathing. In the end, he received it because she was willing to take a gamble that it would not kill him by “wiping out his respiratory drive.”

None of the four physicians who consulted on Mr. Diangelo’s respiratory difficulties over the weekend was his attending physician, because that person was not on call. Staff and physicians did the best they could to relieve each episode of Mr. Diangelo’s distress in the moment. But without the attending physician, it was no one’s specific responsibility to evaluate the adequacy of these measures, to draw conclusions, or to take action based on those conclusions. The nurse told me that she thought that Mr. Diangelo’s repeated attempts to remove the mask were indications of his wish to die, but she did not have the authority to act on that assessment.

30On Monday morning, when they were “ready” to remove the BiPAP and allow Mr. Diangelo to die, his next-day nurse related the events that followed.

RN: The pulmonary specialist came in and saw him. He spoke with the family and said we were prolonging the inevitable. When the doctor said, “turn the BiPAP off,” he said to keep the Dilaudid. He didn’t seem like he was in any distress. We kept the BiPAP on till all the family came. So we waited a little bit before.

The phrase “prolonging the inevitable” is an official pronouncement. With it, the “dying” that the previous nurse recognized on Sunday through Mr. Diangelo’s attempts to remove the mask became “Dying,” that is, certified by the physician and by the family meeting. It was also a statement about both the immediate past and the immediate future. In hindsight, it summed up the experiences of the weekend, confirming the common belief that to be dying is certainly also to be suffering. Hadn’t they all seen Mr. Diangelo suffering before he received the Dilaudid? “Prolonging the inevitable” also framed a dualistic choice about Mr. Diangelo’s future that now seemed to face them: either use the BiPAP to continue to produce more time alive, or remove it and allow death to occur. Mr. Diangelo’s state of Dying in the here and now invited no particular care plan in itself, no set of interventions tailored to this situation, other than simply to get out of death’s way.

Still, the nurse did not follow the physician’s order immediately, and I asked her about the fact that she “waited a little bit.”

HC: How did you know to wait for people to come in?

RN: It was common sense. He did not say I had to take the BiPAP off at a certain time. The daughter said, “You don’t have to wait.” But I said, “Take whatever time you need.” I’ve had dying grandparents. You need time.

Mr. Diangelo was not suffering at the present moment. Informed by a personal experience with her grandparents rather than by protocol, this nurse gently redirected the daughter and managed the situation with perhaps the only tool she had at her disposal: determining when the removal of the BiPAP should occur and doing so according to her internal rhythm of “common sense.” Her delay to allow the family to gather and have “time” was a care plan that acknowledged the unique stature of dying, one that deserved such attention.

31HC: How did the death occur?

RN: We took him off the BiPAP. He did have nasal cannula. He expired in maybe thirty minutes after we cut the BiPAP off. We had him on the heart monitor and saw the heart rate go down. The daughter came out and asked me, “Could you check on him? I think he’s passed.” I listened to his chest and called the house doctor to ask his opinion. He came within five or ten minutes. The family stayed fifteen minutes after. The daughter seemed at peace. She said, “He was 92 years old, he had a good life. He shouldn’t have to live this way.” With the progression over the weekend, they had time to contemplate his passing and were okay with it.

HC: How did it go from your perspective?

RN: All in all it went well. The doctor said he didn’t have much [respiratory] effort on his own.

The nurse’s sensitivity about timing the BiPAP removal perhaps also explained her absence at the bedside. She may not have wanted to intrude, perhaps unaware that she had a valid role to play. If she had been present with Mr. Diangelo and his family, she could have assessed and interpreted the physiological changes that were surely occurring during the interval that passed between the removal of the BiPAP and his death. She did not join them in the room when the monitor outside signaled his imminent death, but waited for the family to emerge and inform her of his “passing.” She followed the after-death protocol and called the physician for pronouncement. She perceived that everyone was satisfied with how events had unfolded, although Mr. Diangelo’s opinion was not sought. Further time alive would seem to have brought only further suffering, and Mr. Diangelo’s weakened frame had “proved” over the weekend that it could not generate respiratory effort. His death had been controlled, the family was “at peace” and did not overstay. For her, orderliness reigned: “it went well.” The lack of respiratory effort “on his own” confirmed the rightness of the decision to stop trying to keep him alive.

Mr. Diangelo’s respiratory status had been tenuous before the weekend, and the DNR order written soon after admission indicated that his attending physician anticipated a fatal deterioration at some point. The fact that he was still in a telemetry bed being monitored indicates some ambivalence about Mr. Diangelo’s situation. By removing him from the category of rescuable, the DNR order had guaranteed what treatment he would not receive, but did not specify what clinicians should do in case his fragile stability 32gave way. When he went off duty Friday afternoon, the attending physician’s instructions to the covering clinicians had omitted this detail. When Mr. Diangelo’s needs changed, clinicians responded in the moment, according him increasing respiratory support but little relief. It was certainly simpler to manage his distress than to confirm openly the possibility that they were bearing witness to the final hours of his physical presence among them.

I did ask the weekend nurse what she might have changed about Mr. Diangelo’s case, and her hindsight was more mixed than that of the nurse who cared for him the day he died.

RN: Because he was a no code, I think he could have come off the monitor and gone to hospice. I don’t know why that didn’t happen.

HC: Would the att...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Introduction
• Chapter 1 Hospital Dying Situations
• Chapter 2 Rescue, Stabilization, and Speed
• Chapter 3 Configuring Dying and Death
• Chapter 4 Death with as Little Dying as Possible
• Chapter 5 “Every Medical Action Is a Transaction”: Rescue as Industry
• Chapter 6 How Rescue as Industry Minimizes Dying
• Chapter 7 Order out of Chaos: The Ritual of Intensification
• Chapter 8 Ritual Display, Palliative Care, and Trust
• Chapter 9 Making a Place for Dying in the Hospital
• Appendix
• References
• Index
• About the Author