End of life in the Burn/Trauma unit: A nursing perspective

Abstract

The issues related to end of life decisions and mortality in the intensive care unit are common occurrences for the nursing staff. For the Critical Care/Burn nurse, issues such as who should be resuscitated, what are the end points of treatment, and what will be the quality of life for the patient if he/she survives are major factors in end of life decisions. Furthermore, the close relationships that can develop between the nurse and the patient and/or the patient's family make end of life decisions emotionally difficult. Unlike the other members of the multidisciplinary team, the nurses spend more time with the dying patient and his/her family, answering questions, explaining the care and course of the illness, and assisting the patient and family in understanding what the doctors have said. Repeated explanations are needed because the family and patient are under tremendous stress. Nurses experience emotional distress and need to develop resilience to continue to care for and work with patients approaching the end stages of life. The purpose of this paper is to briefly review the literature and use a case scenario to illustrate the challenges the Critical Care/Burn nurse faces when caring for the dying patient.

INTRODUCTION

The quality of care as a patient approaches end of life is an important aspect of Critical/Burn care. Typically, the goal of the plan of care of the Critical/Burn patient is recovery and transition to a burn survivor. All members of the Burn/Trauma team contribute to quality of care, and care of the dying patient is no different.

Unlike other chronic diseases, the losses that result from burn and trauma injuries are sudden, life changing events. Victims and their families face an acute crisis, and have not had time to adjust to the trauma. They need time to grieve for these losses. The team must consider the decisions that will be required to assist the patient to a peaceful end of life and lead to acceptance of the upcoming death by the patient and family. It is common for patients not to have advanced directives, to have not discussed end of life issues with family members, or to be unable to verbalize their wishes at the time of injury. The burn team is faced with the dilemma of who to resuscitate and how aggressively to treat the burn patient.[1]

Although this manuscript will discuss nursing aspects of care mainly from burn care perspective, general concepts may be applicable to care of all injured and acutely critically ill patients.

REVIEW OF THE LITERATURE

Because of new technologies and advances in burn care including early excision, early nutrition, advances in antimicrobial therapy, and newer wound coverings, patients with large total body surface area (TBSA) burn injuries are now much more likely to survive. This challenges the multidisciplinary patient care team to address the medical and ethical questions about the strategy and plan of care, including when to resuscitate and what the patient/family desires for quality of life including the decision for comfort care. Shorter and Stayt interviewed eight critical care nurses about experiences of grief and dying patients. They found that participants reported feelings of grief for patients who died, but the death was less traumatic if it was viewed as a “good death,” meaning that the events and issues prior to the time of death were communicated and nursing care was delivered according to the plan of care. The nurse viewed the death as more traumatic when their personal experiences related to death or illness were traumatic or if they had developed a relationship with the family or patient.[2] In a review of the literature by Pronk, looking at the role of the physician in relieving family/patient spiritual distress at the end of life, it was found that physicians need to listen to the patient and let spiritual discussion be guided by the patient and appropriate family members. Furthermore, it was found that physicians were uncomfortable discussing end of life issues.[3] The physician's traditional role is to do all he can to cure the patient, and acknowledging that the burn is not a survivable injury is counter intuitive to this belief. The death anxiety experienced by the dying patient and family related to spirituality work at the end of life of the need for forgiveness and the affirmation that their life was worthwhile may also be difficult for the physician to acknowledge and discuss.[3]

Meissner et al. reviewed the end of life decisions for 14,720 patients admitted to a surgical intensive care unit (ICU) over a four-year period. They found that most (70.9%) do not resuscitate (DNR) decisions were present in patients within the first week of ICU stay. They went on to hypothesize that “surgical culture makes surgeons committed to aggressive therapy during the postoperative period regardless of severity of condition.” DNR decisions were made by a consensus involving surgical and nonsurgical disciplines.[4] Zeitzer examined the concept of resuscitabiltiy in the adult trauma patient to better understand the difficult ethical, economic, and societal questions involved in trauma care. Zeitzer identifies the following four aspects to the concept of resuscitability: 1. working toward the patient's wishes and/or best interest, 2. ethical issues, 3. legal issues, and 4. physiologic state of the patient. Burn patients were not specifically studied; however, these same issues are relevant to the patient with a significant burn injury.[5]

How do we make the decisions in light of new technologies and advances in burn and critical care? Is it more important to use all the medical technology available to sustain life, or is quality of life the most important outcome for the patient and family, and at what cost? For example, burn surgeons utilize the Baux scores (age plus percent burn) to help estimate individual mortality in the burn patient; however, this is just a guide. It has been found that advances in burn treatments have allowed burn centers to save patients with higher Baux scores. Miller developed a model to guide burn care providers in ethical decision making. She recognized the difficulty in determining the state of futility in the burn patient, and her model examines the medical indications, patient preferences, and quality of life issues. She recommends the use of the hospital's Ethics Committee or other similar mechanisms early in the course of treatment as a guide for healthcare professionals and families in difficult ethical decisions.[6] Murphy et al. surveyed 143 burn care professionals (doctors, physical and occupational therapists, and nurses) regarding the percentage of burn that is associated with a significant quality of life to support resuscitation efforts. They found that 33% of respondents would not wish to be resuscitated with a burn 50 to 75% TBSA and 35% respondents would not wish to be resuscitated at 75 to 95% TBSA.[1] Tinsley et al. observed 13 burn nurses, 13 burn physicians, and 9 bereaved family members and found that the majority of the burn surgeons and nurses found it emotionally difficult to support the family after death. The surgeons indicated that this may be related to the long illness, whereas the nurses attributed this to the traumatic nature of the injury and pain the patient and family endured associated with the burn injury.[7]

Stassen et al. asked the question “When is comfort care the right choice for elderly thermally injured patients?” As the population ages, increase in the incidence of burn injury is inevitable. Elderly burn patients (over 65 years of age) bring special challenges to care, including medical comorbidities, functional recovery declines, and general effects of aging on physiology. They concluded that while aggressive burn care for children and young adults who have the potential for long productive lives is well accepted, providing comfort care only for the elderly is controversial. However, they found that for patients over 80 years of age with inhalation injury and with a greater than forty percent burn, comfort care was an appropriate option.[8]

Nurses spend more time with their patients each day than any other of the multidisciplinary team members and have the most interactions with the patient and family. During physician rounds, the attending physician talks to the patient and family and continues on with other patients, while the nurse provides the hour to hour care and reinforces repeatedly to the family what the physician has said as well as the plan of care and the course of the care. Families of the dying patient interact most with the nurse, asking for updates. Nurses, because of the relationships they develop with the patient and the time they spend with the families, are the first to receive questions and be involved in conversations related to prognosis. Many times the nurse is the first to talk with the family about end of life issues or recognize that care may be futile. Nurses over time develop resiliency and coping strategies to continue to provide empathetic care to these patients and their families.

Consider the following scenario in the context of our discussion:

CLINICAL VIGNETTE

A 58-year-old man was admitted to our burn center with a 65% TBSA burn. Hands, face, torso, and legs were involved. Prior to the burn, the patient had an amputation of his left leg. On admission, the patient was awake and alert and oriented. The patient had no advanced directives and was not asked about his wishes. The patient was intubated and ventilated. The plan of care included multiple skin graft procedures. Daily dressing changes occurred which took upward of ninety minutes, and despite morphine and ativan drips and additional opioids for dressing changes, the patient cried and withdrew from pain. Nursing staff also had to suction the patient, provide range of motion exercises, and turn the patient, all which caused pain for the patient. The patient developed multiple bacterial and fungal infections and was placed on multiple antibiotics and antifungal agents. Soon, the nursing staff requested not to care for the patient more than one day at a time because of the suffering and distress his pain caused them. The patient went on to develop a severe eye infection, leaving him blind. The severity of the burns to his hands necessitated multiple hand surgeries, including finger amputations, leaving his hands with very limited function. Because of his pre-existing disabilities, the nursing staff began to question the quality of life this patient would have at discharge. After six months of treatments with minimal improvements, the nursing staff asked for a patient care conference for the team to talk with the family about the care as well as for the team to find out what the patient's wishes would be. The patient had three sons. Two sons wanted to provide comfort care and allow nature to take its course. The third son wanted to continue providing aggressive burn care. There were many social and financial influences with the family members and multiple children with multiple view points on quality of life for the patient. Palliative care became involved, and after much discussion, the family made the decision for a DNR order. The nursing staff found it very difficult to care for the patient because of the amount of pain they had to inflict on the patient for daily care and dressing changes. All burn team members echoed the feelings of the nurse. Finally, after seven months of treatment and a hospital bill exceeding $1.5 million, the patient died. Because of the amount of pain they caused the patient and the length of the suffering, team members did not view this as a “good death.”

This fictitious scenario illustrates the ethical medical dilemmas involved in burn care. When is care deemed futile and comfort care instituted? When should the patient's wishes about dying be addressed? When is comfort care versus withdrawal of care prudent for the patient?

The nursing staff spends the most time with the patient and family and is an integral part of the ethical decisions related to burn care. Nurses are trained to be a patient advocate, and addressing end of life decisions is an important part of this advocacy. Identifying burn patients with advanced directives in the emergency department or before the patient is unable to communicate will allow patients to make their wishes known to their family and healthcare team. Involvement of pastoral care is integral in allowing patients, families, and nurses to communicate their needs. Communicating and discussing ethical issues in the burn multidisciplinary team early in the course of the treatment of patients with large burns will provide the burn patient and family with the best outcomes.

CONCLUSIONS

Further research is needed in this area to look at resiliency and communication about death and dying issues within the team. Genetics research may also provide insight into the management of pain, fatigue, and depression associated with end of life issues as well as resiliency. Education on how to discuss end of life issues is key. Early use of palliative medicine as well as frank discussions among the multidisciplinary team will help patients and families with end of life issues. Evidence-based care models related to end of life issues and definitions related to futility in the burn patient are needed.