The Role of Nurses in Caring for the Dying

Outline

The modern nursing has evolved over time, with the care of the dying emerging as a primary concern to today’s medical fraternity. Many of the critically ill patients (80%) end up dying in hospitals, delegating such care process to nurses (Morris, 2003). Considering the fact that modern technology can significantly prolong life, albeit with the patient undergoing unprecedented pain, such care have indeed become challenging. Some studies have also revealed that many nurses are ill prepared to undertake such responsibility (Dodd, Jansson, Brown-Saltzman, Shirk & Wunch, 2004).

The roles of the nurses, looked at in the perspective of two schools of psychology; behaviorism and humanism, may be confusing and overlapping, thus indicating lack of proper procedure in the care of the dying. The other fundamental issues are in the role of the nurse in the relationships between the nurse and the family of the dying, and the nurse and the doctors or other medical staff. Again, there is also the critical role of the nurse in institutionalizing death. Once the patient has been proven dying, it is the responsibility of the nurse to mediate the process of sharing the whole process to eliminate grief and confusion, thus presenting a more holistic approach.

Introduction

Giving quality care for the dying patients is of primary concern to the modern medical fraternity. In Australia, the number of registered deaths increased from 133,700 in 2006 to 137,900 in 2007, representing about 3.1% rise (Minino & Smith, 2006). In the United States, there are more that 2.4 million deaths recorded annually (Minino & Smith, 2006). Significantly, it is observed that 80% of these deaths occur in hospitals, making the process of care for the majority of dying patients the responsibility of nurses (Morris, 2003). That is to say, critical care nurses are the ones responsible for taking care of these terminally ill patients who are in the intensive care unit.

An environment like that of intensive care unit can really complicate issues due to its unnatural state (Rocker & Curtis, 2004). Magnusson (2004) states, “technological advancements in aggressive medical management at the end of life have led many patients to fear how they die rather than death itself”. For the nurses caring for patients in ICU, the psychological and medical complexities associated with death and dying patients is the order of the day and hence has become a familiar occurrence (Levy, Ely, Payne, Engelberg, Patrick & Curtis 2005). One may argue that perhaps no critical care issue is more emotionally charged and time consuming than the decision to withhold and /or withdraw life-sustaining therapy.

Inghelbrecht, Bilsen, Pereth , Ramet & Deliens (2009) say that the problem always emerges when practitioners and students of critical care are frequently called on to guide patients and their families through this new, complex decision-making process without much prior personal experience or literature on which to rely. Furthermore, the much needed practical skills are rarely learnt as part of formal training, hence many nurses approach the issue awkwardly and with less comfort, perpetuating the problem further (Hall, Schmidt & Wood, 2005).

In some studies, one conducted in the United States and another in Australia, there were some revelations about the perceptions of the critical care nurses of the end-of-life care (Elpern, Covert & Kleinpell, 2005; Dodd et al., 2004). The Australian study reported that nurses seriously needed a better pain control measures for dying patients, putting a lot of emphasis on the need to improve communication between physicians and patients as well as between physicians and nurses (Elpern, Covert & Kleinpell, 2005). Again, nurses echoed that they should be thought of as important advocates for patients (Elpern, Covert & Kleinpell, 2005).

A similar study in the United States had respondents expressing extremely complex feelings about end-of –life issues. In the general findings: the nurses felt that they needed to have more say in the care of dying patients, acknowledged that there was no consistency in such cares, and that they did not believe the critical care environment adequately fostered the compassion needed by the dying patients (Dodd et al., 2004).

The advancement in diagnosis and treatment technology for acute and chronic disease has even intensified the need for a proper critical care. This is because patients are spared the impending death only to face unexpectedly prolonged and painful death (Beckstrand & Kirchhoff T., 2005). It is expected that issues associated with end-of-life care will continue to increase and dominate in importance. This paper critically analyses the role of nurses in managing the aspect of care for the patient and their families in the critical care, looking into details the adequacy and inadequacy in the process.

Literature Review

The term critical care emerged from the two competitive constructs; the person who needs critical care must be physiologically unstable, at risk, or in danger of dying; and the intensive care is usually given to the person in the expectation or hope of recovery, however slim the chances are (Fairman & Lynaugh, 2006). Thus critical care may mean support for the terminally ill patients or the dying patients, taking into consideration the state of the patient and the family members, friends and the significant others.

Critical care nurses have always cared for the most vulnerable patients and their families in the past. The past decade has seen the healthcare environment changed significantly, yet the values and focus of the nurses’ practice have remained constant over time, as Hall, Schmidt & Wood (2005) say, “the focus has basically remained on the patient’s physiological treatment rather than emotional breakdown of the patient and the family”. Probably it is this focus and the potential for unsafe patient care situations that led early nurse and physician reformers to collaboratively challenge traditional hospital nursing and healthcare nursing systems.

From 1950s towards 1970s, there was the increase in essential elements of patient needs, the growing medical knowledge, increased governmental funding, and the changing societal values (Fairman & Lynaugh, 2006). Dodd et al. et al. (2004) explains that these aspects came together to stimulate a radical and a seemingly chaotic reorganization of nursing care in hospitals and that the now ubiquitous intensive care units grew out of combination of professional interest in change and new public expectations for care. Although there was opposition to some of the changes, critical care was enthusiastically embraced by most professionals and the public, who shared a simple understanding of the drive to preserve human life even at death (De Beer, Gastmans & Dierckx, 2004; Curtis & Puntillo, 2007).

The gravely ill persons, especially those who underwent major operations, cardiac patients, and kidney dialysis patients constituted the larger sub population of the hospital patients demanding critical care, thus creating a growing nursing crisis (Curtis & Puntillo, 2007).

Modern Critical Nursing Perspective

It is important to analyze what nursing means in the context of intensive care. On this perspective, Institute of Medicine (2007) identifies the four possible roles of nurses: 1. as surrogate parents, 2. as technicians, 3. as contracted clinicians, and 4. as advocates. However, these roles may be critically looked at in the perspective of two schools of psychology; behaviorism and humanism, which have practically influenced healthcare and society (Hall, Schmidt & Wood, 2005). This is because it has been noted that philosophical beliefs affect our values, and consequently influence our approaches to care (Bendiane, Bouhnik, Galinier, Favre, Obadia , & Peretti-Watel, et et al., 2009).

Behaviorism

The behavioral theory enables social control and so has become important and influential when society valued a single socially desirable behavior, thus behaviorism has focused much on the outward, observable behaviors and for behaviorists, learning is a change in behavior (Woodrow & Roe, 2007).

Shanawani, Wenrich, Tonelli & Curtis (2008) state that nurse education contains a “hidden curriculum” that controls the behavior of students and their socialization into the nursing culture and that it is through Gagne’s influence that many nurses have accepted and been acclimatized into a behavioristic culture without always being made aware of its philosophical framework, and that this philosophy has often been covert, “masked under the guise of humanism”. For example, the debate that surrounds nursing uniforms and their replacement in ICU with theatre-style “pyjama suits” can reflect values about outward appearance (Sandelowski, 2004).

Poncet, Toullic, Papazian, Kentish-Barnes, Timsit, Pochard, et al. (2007) intimate that whether from cause or effect, or simply put “types of nurses attracted to work in ICU or values learnt from others”, similar covert socialization among ICU nurses encourage adoption of such defensive mechanisms as limiting communication to under one minute (even with conscious patient), and providing nurse-led information, questions and commands.

This behaviorist theory is largely drawn from animal experiments (Sandelowski, 2004). Unfortunately, Sandelowski (2004) maintains that humans do not always functions like animals, especially where cognitive skills are concerned. It is worth noting that the focus on outward behavior does not necessarily change inner values. People can therefore adopt various behaviors in response to external stimuli or motivators, and once the stimuli are removed, there is the possibility of reverting, especially when no external motivator like personal values exists (Sandelowski, 2004). It thus follows that if internal values remain unaltered; the desired behavior exists only as long as external motivators remain (Morris, 2004).

A case in point is when a patient in ICU attempts to remove his of her endotracheal tube even though there having been no plans to remove it yet (Poncet et al., 2007). In the behavioral approach, the nurse would have the following options: explanations which are cognitive in nature, accepting extubation, analgesia and sedation which is control, and restraint like chemical sedation (Woodrow & Roe, 2007).

In this aspect, it is logical to note that ‘pure’ behaviorism has already been tampered with humanitarianism: to try and comfort. Nevertheless, description remains deliberately behavioristic, seeing the problem as behavior (extubation). In this case, the patient’s attempt to excubate is because the tube causes distress (Woodrow & Roe, 2007). Until the underlying problem is resolved, they remain problems; restraint only delays resolution. Shanawani, Wenrich, Tonelli & Curtis (2008) further critique that pre-registration courses still emphasized task-oriented, rather than holistic nursing.

Humanism

Humanism has a long history of application; probably due to its connotation of human welfare and dignity sound attractive (Meltzer & Huckabay, 2004). Heyland et al. (2004) states, “it is worth noting that our beliefs, even if we are unaware of their source, influence our practice”. It is thus suggested that the art-versus-science debate within nursing is an extension of the humanistic-versus-mechanistic (i.e. behaviorism) debate of philosophy. Meltzer & Huckabay (2004) therefore explains that the art of intensive care unit (ICU) nursing- the process of bringing humanity into intensive care can be optimized by: being there, sharing, supporting, involving, interpreting, and advocating. It emphasized the need for individual self i.e. “persona-centered” rather than society’s need.

Humanists believe that people have a psychological need to attempt to achieve and to realize their maximum potential, with self-actualization as the top ranked need in the hierarchy (Woodrow & Roe, 2007). Concern for the inner values as well as holistic approaches to care makes humanism compatible with many aspects of healthcare and nursing. Woodrow & Roe (2007) therefore observe, humanism has much to offer nurses in the process of analyzing their philosophies of care and practice.

Fundamental aspects of ICU nursing

Terminally ill patients of dying patients are basically put in intensive care units of hospitals, where they are expected to receive maximum care. But the fundamental problem is that many ICU staff value cure rather than care, a phenomenon that should not be the case because cure without care is almost a contradiction in terms (Tepehan, Ozkara & Yavuz, 2009).

Technology

The care for the dying patients developed with the emergence of technology to care for the terminally ill patients. Such technologies included the respiratory units for mechanical ventilation developed from the polio epidemic of 1952 accompanied by the first purpose-built intensive care units in the UK that opened in 1964 (Heyland, Rocker, O’Callaghan, Dodek & Cook, 2004). Elpern, Covert & Kleinpell (2005) state, such units offered potentially life-saving intervention during acute physiological crises, with much emphasis on the medical need and availability of technology.

Although many ICUs employ technicians to operate and manage the machines, technology-related tasks are still delegated to nurses, such as managing bedside machines, recording observations from them and changing regimes as prescription change (Bendiane, Galinier, Favre, Ribiere, Lapiana & Obadia, et al., 2007). Curtis & Puntillo (2007) however advise that the fact that technology provides a valuable means of monitoring and treatment should not allow it to become a substitute for care.

For nursing to retain a patient-centered focus, it is the patients themselves and not the machine that should remain central to the nurse’s role. It is thus critical to observe that technology should never be used to justify the role or presence of nurses. Despite the importance of technical roles, nurses caring for ICU patients, especially the dying patients should be more than just technicians (Dracup & Bryan-Brown, 2005).

Doctor- Nurse Relationships

Institute of Medicine (2007) note that nurses working in high dependency areas often have good relationships with the medical staff and that most nurses at the ICU would not only agree with this but also value it. However, Heyland et al (2004) suggest that this relationship is on the term of the medical staff and nothing more. Some recent studies in Canadian Hospital’s ICU department suggest that values differ between doctors and nurses, influenced by profession rather than gender, and that this can lead to potential communication breakdown. For instance, the nursing focuses on the emotional costs to intensive care patients and this may limit the wider recognition of nursing as a profession (Heyland et al., 2004).

It is nevertheless recommended that nurses should continue collaborating with doctors, but how the collaboration is achieved will vary between units and individuals (Dracup & Bryan-Brown, 2005). However, while recognizing and respecting the valuable as well as unique role of doctors, this collaboration by nurses should not mean subservience. Magnusson (2004) advises that the role of doctors and technicians should only be part of the nursing for the dying, and that nurses need to define their unique role and contribution actively and positively within the specialty, a process that is achievable through exploring nursing values.

Relatives and Friends

Relatives, friends together with significant others have been identified to form an important part of each person’s life, and they too are similarly distressed by the patient’s illness. The psychological crises experienced by relatives, especially if the patient has been identified as “dying” by the medical staff, necessitates skillful psychological care, such as the provision of information to allay anxiety and make decisions, and facilities to meet their physical need (Levy et al. 2005).

Relatives should be offered the opportunity to be actively involved in the patients care without being made to feel guilty or becoming physically exhausted, rather than left sitting silently at the bedside, afraid to touch their loved ones in case they interfere with some machine (Heyland et al. 2004). Levy et al. (2005) state that ICUs might become more humane if visiting were individualized to meet, first, the individual needs of the patients and, second, the needs of families and friends.

The role of the Nurse in Institutionalizing Death

Once the patient has been proven dying, the decision to withdraw life support may be a tricky affair, ethically speaking. This is because such a decision is not always addressed in the hands-on management issues that are surrounding the dying process (Poncet et al., 2007). Without a shared understanding of the process, outcomes and standards, there is the possibility of a chaotic experience occurring (Heyland et al. 2004). However, even though hospice personnel have such a shared understanding of the terminal care they provide, the context of hospice practice and the longer death trajectory of hospice patients make the translation of that understanding into ICU practice problematic (Poncet et al., 2007).

Woodrow & Roe (2007) explain that when making a decision to withdraw life support, the nurses should be ready to acknowledge that a “new game has started in the inhospitable field to orient them to their new priorities of care: Dying is a process, and attending to the dying process is an ethical end in and of itself”. On the other hand, Heyland et al. (2004) suggest that nurses should mainly do two things: invite participation in the process and allow time to pass.

Invitation to Participate

As stated earlier, patient’s relatives, friends, and significant others form an important part of the critical nursing process and thus should be included for effective care of the dying. Heyland et al. (2004) emphasizes that inviting patients and their families to participate in the dying process, nurses should be ready to form both “power and powerlessness”, where the power includes access to information and control of situation. In this scenario, nurses have the opportunity to share information about the dying process in particular as well as the processes they have undergone in terms of experience (Heyland et al., 2004).

At the same time, they can invite the other participants to share the experiences they might have acquired in witnessing the dying process in the past and subsequently contribute suggestions for the process that is taking place at the time (Woodrow & Roe, 2007). Magnusson (2004) therefore suggest some questions: how do the participants define life and death? What do they think happens following death? Do they wish to be present during the process of death? Are there religious or cultural norms that they wish to consider? Sharing power also means sharing acknowledging and affirming cultural differences.

On the other hand, sharing powerlessness means sharing both lack of information and lack of control in a particular situation (Heyland et al., 2004). Sandelowski (2004) says that it is easier for participants to acknowledge regrets, sadness, and fear when they know that these emotions are shared with and affirmed by others. For nurses in such situations, this would present a perfect time to listen, and not talk, and a simple nod in response to another’s words is often sufficient (Magnusson, 2004).

Morris (2004) emphasizes that allowing others to participate include letting others share in immediate task. For both parties, including patient, relatives, nurse and the significant others, the knowledge that one did something, however trivial, to assist a loved one in his or her last hours is no doubt a tremendous asset in the grief work that follows a death (Morris, 2004).

As a practicing nurse in the critical care, Bryant Clifford says that from his personal experience, the nurse’s invitation to participate may not only be helpful to the patient’s family, relatives and friends, it may also alleviate constant instructions into nurse’s work by these persons (Poncet et al., 2007). He states that by taking a few minutes to teach someone how to perform a simple procedure for the patients, the nurse can avoid repeated requests to service (Poncet et al., 2007).

Understandably, the level of concern is always noticeable among the families and friends, especially about the cessation of feeding during the end of stage of the dying process. After all, it is through feeding that we can show the level of care and love, particularly in some cultures (Heyland et al., 2004). Heyland et al (2004) further explain that by allowing family members and friends to “crush ice or popsicles and place small bits on the patient’s lips, the nurse can immediately provide relief on both the strain of watching a loved one die and at the same time provide platform for the fond memories by the survivors, drawn following the death.

However, it is logical to note that some of these participations are never feasible. Magnusson (2004) states, a crowded critical care area may not give any opportunity for some of participation and that such simple task as placing a cool cloth on the patient’s forehead, wiping the patient’s mouth and moistening the patient’s lips may look less important but will allow family members and friends to participate in the caring for their4 loved one.

Allowing Time to Pass

In their experience as practicing nurses Fairman & Lynaugh (2006) observes that most of the participants would want to know when the death is expected to take place. They advises that when they ask, it is critical for the nurse to acknowledge that their wish to know is normal and then draw attention away from the death itself to the process leading toward death (Fairman, & Lynaugh, 2006). When cure is the goal, it is the professional who determines both the process to be done and the timing of these procedures and that it is the dying person who controls the process when death is imminent (Magnusson, 2004).

It is thus important for the nurse to focus on what is happening at the moment with the patient and those who wait with him or her rather than approximate the time of the future event, thus helping the drama run smoothly (Levy et al., 2005). One way of doing this is for the nurse to facilitate communication between the patient and the family members and friends (Magnusson, 2004).

Conclusion

It is suggested that healthcare professionals, especially nurses in the critical care for the dying should prepare themselves with new roles and skills when death is imminent (Woodrow & Roe, 2007). These new roles may involve the nurse as a director of the whole scene-that would entail planning ahead; the nurse as a role model-that is the nurse should be able to take the lead role that others can follow; and the nurse as educator- this is because the nurse may have experienced some similar deaths and therefore should be in a position to draw experience to help him or her educate the family members, friends and the significant others (Woodrow & Roe, 2007).

This may involve critical analysis of areas such as what are the signs of approaching death? What will take place as the death occurs? What behavior is appropriate? And what will happen following the death? (Meltzer & Huckabay, 2004)

It is therefore critical to note that the things the nurse says at the time of the death, and the way of saying it will definitely have critical impacts on patient, family members, friends and significant others, both at the time of death and thereafter. This gives nurses of the dying a bigger role than never before, hence the need for proper preparations that may involve adequate training and experience through exposure.

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