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Challenges in Outpatient End-of-Life Care: Wishes to Avoid Resuscitation

From the Department of General Internal Medicine, Ambulatory Treatment, and Emergency Care, Department of Critical Care, and Clinical Ethics Service, The University of Texas M.D. Anderson Cancer Center, Houston, TX

Address reprint requests to Jessica P. Hwang, MD, MPH, Department of General Internal Medicine, Ambulatory Treatment, and Emergency Care, Unit 437, The University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030; e-mail: jphwang{at}mdanderson.org

HERE'S THE CASE

Ms P. was a 69-year-old woman with anaplastic thyroid carcinoma and progressive compression of her airway, despite chemoradiotherapy. She had recently been admitted to the hospital for worsening respiratory distress. Her physician, after discussing her poor prognosis with her, referred her to inpatient hospice. She completed a Living Will directing comfort care only in the event of terminal or irreversible illness. Her physician wrote a do not resuscitate (DNR) order after discussing with her that she was unlikely to survive to hospital discharge if she had to be resuscitated after a cardiac arrest. Both the Living Will and DNR order were placed in her medical record. Two days later, Ms P. was discharged to an inpatient hospice. One week later, because of the scarcity of local inpatient hospice beds, Ms P. was discharged to continue hospice care at home. A few weeks later, while she was home, Ms P. became increasingly short of breath. Her family called 911. On their arrival, the emergency medical technicians (EMTs) noted that Ms P. was in respiratory distress. Shortly thereafter, she became apneic and pulseless. The EMTs intubated Ms P. and initiated chest compressions. Fifteen minutes later, Ms P. arrived in the emergency center (EC) in ventricular fibrillation. EC staff administered defibrillation and continued resuscitative efforts. Ten minutes later, the inpatient DNR order from the previous hospital admission was verified. The EC physician contacted Ms P.'s primary physician, who confirmed that the DNR order should be honored. Resuscitative efforts were discontinued, and Ms P. died. The EMTs' chart note stated, "Family reported patient was DNR at home, but they didn't have any paperwork."

WHAT COULD HAVE GONE WRONG BUT DID NOT?

Many factors can contribute to end-of-life misunderstandings and mishaps. First, a patient's treatment goals may be unrealistic. However, Ms P. clearly understood her poor prognosis and opted not to have life-sustaining or death-prolonging efforts when her condition deteriorated. The literature reports that most elderly patients do not want cardiopulmonary resuscitation (CPR) after being informed of their low probability of survival.¹ Second, miscommunication and lack of knowledge of patients' preferences can also cause end-of-life miseries and overtreatment. According to one study, only 47% of physicians know whether their patient prefers to avoid CPR.² Furthermore, physicians misunderstand the CPR preferences of patients approximately 30% of the time.³ Discussing and obtaining a medical DNR order is difficult for many physicians⁴ because of a lack of training or experience, fear or sense of personal failure, or worry that the patient will perceive abandonment by the physician. However, these obstacles were not present in this case. Ms P.'s physician had previously discussed her prognosis with her, informed her that CPR would not likely benefit her, and wrote a DNR order.

WHAT WENT WRONG?

Why then did Ms P., who was clear about her wishes and whose physician clearly communicated the medical inappropriateness of CPR, undergo nonbeneficial and probably harmful endotracheal intubation, chest compressions, and defibrillation in the last moments of her life? The answer is that there was an absence of a comprehensive, concrete, and anticipatory educational intervention for Ms P. and her family regarding the out-of-hospital events that were likely to occur.

HOW CAN WE DO BETTER?

Although the physician and other members of the medical team devoted skill, time, and effort communicating with Ms P. about her inpatient resuscitation status, their work was not sufficient. Oncology professionals, through their training and experience, possess an enormous amount of knowledge about how cancer patients die. For most patients and their families, the dying process is far less familiar and very frightening; they need their medical teams to educate and inform them. Once the primary service concludes that no further medical intervention, other than comfort care, is appropriate, the patient and family members need to understand what is likely to happen in the near future, including the specific signs and symptoms that are likely to occur at the end of life. These things, of course, depend on a specific patient's disease and the accompanying and likely trajectory of dying and death. The patient and family need emotional and psychological support to confront their questions and their apprehension of the future. Referrals to palliative care or home hospice could also occur during these conversations, depending on the individual circumstances and agreement between the patient and the primary service.

The education process should also encompass the question of resuscitation. Inpatient DNR orders may need to be written and placed in the patient's medical chart. For outpatients, discussion of resuscitation status may be even more critical, as suggested by Ms P.'s experience. Watching a family member in the active phase of dying is extremely difficult. For some families, especially those who have had some disagreement with the treatment plan, calling 911 may represent their last effort to try to "do everything." For others, a call to 911 may arise from pure panic. It is vital that the concerns of the patient and family be prospectively addressed before the patient leaves the hospital. Statements such as the following can open up discussion and prevent last minute panic: "We need to talk about what is likely to happen after you go home, so you know what to expect and your family knows how to keep you comfortable. Let's talk about the symptoms you are likely to have and how to respond to them." Family members need to be informed of what will happen if they call 911; EMTs responding to a 911 call have a legal and ethical obligation to stabilize and transport the patient to the nearest EC, unless there is clear documentation or evidence of an out-of-hospital DNR order.

Most states provide for out-of-hospital DNR orders.⁵ State laws, written with EMTs and EC personnel in mind, typically mandate forms with easily recognizable logos and may permit DNR identification devices worn around the wrist or the neck. Physicians and other healthcare professionals who engage patients in advance care planning and who facilitate the writing of out-of-hospital DNR orders can explain to patients that the wrist or neck devices help prevent misunderstandings, miscommunications, and mishaps. The patient and the family should be alerted to practical considerations such as keeping a copy of the out-of-hospital DNR order close at hand (eg, taped to the refrigerator door).

Because of the nature and extent of information about the dying process needed by terminal patients, this education process is time consuming and challenging for professionals. In the inpatient hospital setting, all the members of the oncology team, which comprises physicians, nurses, social workers, and case managers, have critical roles. Physicians and nurses, having strong relationships with the patient, can lend support in addition to providing crucial medical information; social workers and case managers supplement that information with practical guidance and additional support. If available, inpatient palliative care professionals can contribute additional resources to this endeavor. These services should be provided in the inpatient setting before discharge, even for patients referred to hospice. As in Ms P.'s case, the inpatient hospice did not provide this educational intervention in a timely manner. In some cases, discharged patients and family may not meet the hospice medical team for days, and patients may deteriorate more quickly than anticipated. Moreover, patients and their family may not have the benefit of having established a trusted relationship with any of the healthcare providers when they do meet the hospice staff.

In cases where neither the primary team nor palliative care team is able to provide extensive education and counseling, oncologists might consider forming selective consultation teams specializing in the smooth transition from inpatient care to hospice care. Such consultation teams, comprising skilled professionals (such as a physician, a nurse, and a social worker) who have experience with end-of-life issues, could work with the patient's primary medical service on the shift to comfort care, planning tailored and detailed end-of-life care and coordinating the resources to implement the plan. A standardized protocol, including a checklist of issues to be addressed by the consultation team, could ensure appropriate attention to common patient needs and could allow for measuring quality performance and improvement.

The published literature indicates that end-of-life care remains suboptimal for many patients. For patients such as Ms P., we can and should do better. Improved communication with patients and families, including information and education about what to expect at the end of life, will help. The communication process should include explanation, promotion, and utilization of out-of-hospital DNR forms and devices.

Authors' Disclosures of Potential Conflicts of Interest

The authors indicated no potential conflicts of interest.

NOTES

Authors' disclosures of potential conflicts of interest are found at the end of this article.

REFERENCES

1. Murphy DJ, Burrows D, Santilli S, et al: The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation. N Engl J Med 330:545–549, 1994[Abstract/Free Full Text]

2. The SUPPORT Principal Investigators: A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 274:1591–1598, 1995[Abstract]

3. Haidet P, Hamel MB, Davis RB, et al: Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. Am J Med 105:222–229, 1998[CrossRef][Medline]

4. von Gunten CF: Discussing do-not-resuscitate status. J Clin Oncol 19:1576–1581, 2001[Free Full Text]

5. Sabatino C: Survey of state EMS-DNR laws and protocols. J Law Med Ethics 27:297–315, 1999[Medline]

Submitted January 7, 2004; accepted August 25, 2004.

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