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The issue of death and dying in healthcare

I am the one who is dying! Anonymous, American Journal of Nursing, 1970 With help and support from family, friends, and others in the community, many people can live their lives, while dying, with some or considerable independence from the health care system.

Many, if not most, however, draw heavily on that system for care—and caring—in the form of clinical services, counseling, and practical assistance with both medical and nonmedical needs.

Thus, while the role of family and community resources should be acknowledged and strengthened, it is also essential to understand how care systems serve patients well and poorly and to identify the system characteristics that contribute to poor care. Such understandings, which will depend on better data and research than now exist, will help provide the basis for steps to remove the impediments to good care and to fortify the foundations for reliably excellent care.

In general, care systems—both as discrete organizations and as unevenly connected arrays of community institutions and services—require people supported by facilities and processes who are prepared to determine what care is appropriate, to arrange its provision, and to monitor performance for consistency with organizational and external norms. Broadly, this means having the capacity to provide or arrange for symptom prevention and relief; attention to emotional and spiritual needs and goals; care for the patient and family as a unit; sensitive communication, goal setting, and advance planning; interdisciplinary care; and services appropriate to the various settings and ways in which people die.

These process of care elements are, in a sense, statements of expectations for the care system. Most of these elements were discussed in Chapter 3which emphasized the importance of sympathetic but clear consideration of prognosis and goals and fitting care strategies to the issue of death and dying in healthcare.

This chapter considers the major settings of care in which people die and identifies questions about the ways care is structured, provided, and coordinated.

Palliative and End-of-Life Care: Issues, Challenges, and Possible Solutions in the United States

It concludes by considering aspirations for an ideal care system and what this implies for the mix of organizations, programs, settings, personnel, procedures, and policies that make up care systems. Unlike new mothers or women undergoing mastectomies, who have recently been the subject of highly publicized criticisms of early discharge, dying patients are not themselves a potent lobbying group and their survivors are often exhausted, grieving, and expected to put their lives back together and move on.

Thus, health care professionals, managers, and others have a particular responsibility to press for care systems that people can trust to serve them well as they die. Characterizing Care Systems Trying to present a coherent picture of health care systems as they serve—or fail to serve—those who are dying is not easy.

First, the two million people who die each year have both variable and common characteristics and needs. Second, the organizations and personnel the issue of death and dying in healthcare may be involved in end-of-life care are likewise numerous and variable. Nationally, there are roughly 6,000 hospitals, 16,000 nursing homes, 11,000 to 15,000 home health care and hospice agencies, 650,000 generalist and specialist physicians, 2 million nurses, tens of thousands of social workers involved in health care, 1 and numerous other categories of health personnel and facilities including several hundred health maintenance organizations HMOs and other managed care and health insurance arrangements.

Helping Patients Face Death and Dying

Third, data about care at the end of life are very limited. Even the term health care system has no fixed meaning. It can be used in at least four different ways—not because people are being careless in their language but because the term is intrinsically general and capable of applying to several situations.

First, the term health care system may be used to describe and analyze a community's or region's array of health care organizations and services, whatever their relationships.

Healthcare Perspectives - Death and Dying

This is consistent with one dictionary definition of a "system" as a set of objects grouped together for classification or analysis The American Heritage Dictionary, 3d ed. In this usage, the health care system in New York City could be characterized as an aggregation of loosely interacting sometimes cooperating, sometimes competing, sometimes self-absorbed components within a large, socially and economically complex geographic area.

Fragmentation has been cited as the key characteristic of such systems in the United States Shortell et al. Although they may be viewed as rather disorderly systems, they are—analytically—still systems rather than nonsystems. In part as a result of their weaknesses and in part as a result of shifting political tides at the community and national level, these sorts of health-planning mechanisms have largely been abandoned in favor of more market-based strategies.

In a second and broader sense, the term health care system may also encompass the norms, public policies, and social values that shape the delivery of health care in a community or a society. This is consistent with another dictionary definition of a "system" as the prevailing social order The American Heritage Dictionary, 3rd ed.

Thus, a reference to the Canadian health care system or the American health care system may signify not just a collection of institutions and personnel but also a culture. A third and much narrower use of the term applies to a particular entity that integrates a comprehensive range of health care services and the facilities and personnel to provide those services Coddington et al.

  • As in Chapter 3 , these cases do not exactly describe a single patient or institution or represent statistically typical patients;
  • In the not too distant past, it was the norm to keep patients in ignorance of a poor prognosis;
  • Although it did not locate analyses focused specifically on patients approaching death at home without benefit of formal hospice care, it expects that their experience is quite variable;
  • The United States lags behind 20 other nations in life expectancy and its quality-of-death index is below that of a majority of developed European nations;
  • Patients may develop a strong attachment to home care nurses and other personnel, although frequent discontinuity of personnel is a problem.

The integration is formal and institutionalized through explicit controls related to personnel, budgets, and other matters. Systems in this sense may be more or less geographically concentrated, as is the Henry Ford Health System in Michigan, or geographically dispersed, as is the U. In this chapter, the discussion tends to focus on community health care systems, but it will be clear that such systems are embedded in a national health care system and include organizational systems as components.

The committee uses the term care system to highlight the special role in care for terminally ill patients—and frail individuals more generally—of nonmedical services such as spiritual and bereavement counseling, respite care, and housekeeping assistance.

In addition to formal or organized health care systems, informal care systems can also be distinguished; they include the family, religious communities, and folk culture Kleinman, 1978; Kleinman et al. These systems play a central role for many if not most patients and families, but they were not the focus of this study. Illustrative Case Histories To illustrate the variability of care for those who are dying, this section presents several more cases. As in Chapter 3these cases do not exactly describe a single patient or institution or represent statistically typical patients.

The cases synthesize committee experiences, cases in the medical literature, research findings, and specific problems reported to the committee. Several describe situations that particularly strain care systems. Ellen Arthur, a 78-year-old retired teacher diagnosed with kidney cancer, underwent surgery and a trial of experimental chemoimmunotherapy.

Tests then showed that the cancer had spread to her lungs and bone. She was incurably ill but not imminently dying and could reasonably be expected to live for another year, perhaps two. She felt fairly well except for mild fatigue.

She and her husband were financially comfortable, well educated, and surrounded by supportive family and friends. They reviewed the durable power of attorney and related documents that they the issue of death and dying in healthcare prepared many years ago.

After several months of fairly normal activity, pain and weakness began to require an increasing amount of medication. Ellen Arthur's physician concluded that she could very well die within the next six months—probably less—and certified this so that she qualified for the Medicare hospice benefit. Her physician coordinated care with the hospice medical director who, in turn, worked with the patient, her family, and an interdisciplinary team to implement the care plan as initially designed and later adjusted as the illness progressed.

Protocols allowed the nurse to adjust pain medications within defined boundaries, and she advised ways to prevent or soothe other symptoms. For example, she suggested ice chips and glycerin swabs to ease dry mouth and advised balancing rest and activity to reduce the burden of fatigue. The family needed little other direct service from the hospice.

Physical therapy and other medical services were not indicated, and the family found emotional and spiritual comfort in their friends and their faith and in reviewing their life together. Friends also pitched in to provide occasional practical help with meals, errands, cleaning the house, and respite time. John Arthur was informed about how to recognize changes in his wife's condition, especially signs that death was imminent.

He knew that if something happened that he could not handle—seizures, for example—he could call the hospice any time, day or night, and help would be sent. The Arthurs were informed that if they called 911 in such an emergency, the protocol for paramedics in their jurisdiction required attempts at resuscitation and other interventions and transport to the hospital. Ellen Arthur died at home with her husband at her side.

It is marked by fragmented services and failure to provide appropriate referrals to hospital and community resources. No one had overall responsibility for this patient's care and well-being. Solomon Katz, a 75-year-old retired postal worker, experienced progressive weakness in his left leg for over a year, but he sought care in the emergency department only after he fell and could not get up by himself.

After an array of tests, he was diagnosed with lung cancer metastatic to the brain. He accepted medication but refused a lung biopsy. Hospital staff described him as "in denial," but a psychiatric consultant assessed him as reacting appropriately and capable of making his own decisions.

He revealed that his wife died of cancer two years earlier; he did not want to go through the treatments she had. After continued pressure the issue of death and dying in healthcare the oncology team, he agreed to a biopsy, which confirmed the previous diagnosis. They offered options for life-prolonging but invasive treatment; he declined. He was discharged home with home care and follow-up appoint ments at two clinics.

The medical staff did not refer him to the hospital's social work staff, and no one sat down with Solomon Katz and his family to talk with them about the prognosis, palliative care options, or their concerns and preferences. He did not keep his follow-up appointments, but no one checked to see why. Three months later, Mr. Katz was again brought to the emergency department following grand mal seizures. He was lethargic and could not talk; a CT scan showed progression of the brain tumor, including partial brain stem herniation.

He was started on intravenous medications and fluids, and then oxygen and nasogastric tube feedings. The neurology team wanted to resect the brain tumor. His son, a grocery store clerk, refused surgery and the issue of death and dying in healthcare for a do-not-resuscitate order on the basis of his father's previously expressed wishes. During the next three weeks, Mr. Katz was minimally responsive but repeatedly removed the nasogastric tube despite restraints.

After pressure from the hospital staff, the son agreed to insertion of a percutaneous gastrotomy tube. On the following day, Solomon Katz died of a cardiac arrest with no family present. The son was upset by the entire experience, particularly when he later learned that his father's dying could have been a less brutal experience and that his care could have been managed differently with an emphasis on understanding his goals as his life ended and providing physical and emotional comfort.

The case attracted the attention of the hospital ethics committee, which concluded such clearly inappropriate care indicated serious system problems. It began to mobilize an institution-wide effort at self-examination, staff education, process changes, and quality measurement and improvement.

  1. Beyond its particular prognostic focus, this exercise may also encourage more consideration of how patients with noncancer diagnoses can benefit from better palliative and supportive care over the course of their less predictable and often more extended incurable illnesses. In part as a result of their weaknesses and in part as a result of shifting political tides at the community and national level, these sorts of health-planning mechanisms have largely been abandoned in favor of more market-based strategies.
  2. Every hospital's goal should be to provide as good a death for the patient and family as a patient's illness and circumstances permit. Financial issues and access to local and national resources.
  3. Some provide the key clinical services while others provide emotional and practical support to patients and families or perform administrative and informational tasks for the hospice. For example, if hospice personnel are involved with the care of a long-term nursing home patient, staff at the nursing home may have established a close relationship with that patient and may be upset if their care for the patient is ignored.
  4. Did you find this information useful? Less intensively involved personnel may work part-time or on a contract basis.

When it was time for life support to be ended, a protocol was followed that emphasized patient comfort and attention to the family. Dorothy Chang was a 54-year-old woman with aplastic anemia who received a bone marrow transplant in August. She tolerated the procedure well, but her discharge from the hospital was delayed due to recurrent bacterial infections.

Her infections resulted from a narrowed esophagus. An attempted corrective procedure was complicated by rupture of the esophagus and a life-threatening infection that required placement of a drainage tube in the chest and intravenous antibiotics in the ICU. She remained intubated with recurring pneumonia.

The pneumonia slowly improved, but a trial with removal of the ventilator failed. Significant muscular weakness developed, exacerbated by chronic steroid use. A tracheostomy was performed, and a feeding tube was placed with some difficulty. In early November, a head CT scan revealed a lesion consistent with a fungal brain abscess. Despite treatment, another CT revealed advancing disease, and a brain biopsy suggested Aspergillus infection, which occurs mainly in immune-compromised people and is very resistant to treatment.

Chang's condition declined further. She became minimally responsive, and her husband agreed with her physicians that further life-supporting treatment would only prolong death.

Health Care Providers and Dying Patients: Critical Issues in Terminal Care

With support from the hospital's comfort care team, Ms. Chang was moved to a more private area where her family could be with her when the ventilator was removed by an experienced physician known to the family. After all monitors and other supports were removed except an intravenous morphine drip, she was given intravenous morphine and midazolam to ensure that she would not experience distress.