End-Of-Life-Care: Are Nurses Educationally Prepared?
Submitted by Lisa Marie Chiplaskey, MSN, Ed., BSN
This study identifies that nurses are educationally unprepared to offer quality end-of-life care to patients and families. Exploration into end-of-life care issues is examined utilizing a historical context. Focus areas for improvement in today's education of nurses have been identified as spiritual-psychosocial health areas and physical health areas. The recommendations for improved end-of-life nursing care outcomes are identified as: an increase in end-of-life issues in curricular content, continuing education, and revision of texts to more current competency standards. The potential for "good death” by being cared for by competent nurses is recognized by being educationally prepared to perform adequate end-of-life nursing care.
Why were they bothering him?
Why couldn't they go pick on some other dead man?
Future corpses shouldn't be forced to answer questions.
Death was man's ancient privilege, his immemorial pact with life,
Granted to the slave, as well as the noble.
But perhaps they had revoked that right; and now,
You couldn't evade your responsibilities,
Simply by becoming dead.
End-of-life (EOL) care is defined as an active, compassionate approach that treats, comforts, and supports persons who are living with, or dying from progressive or chronic life threatening conditions (Ross, 2000). We should not fear death, nor should we ignore it. Unfortunately, the issue of death has been denied, hidden, and thus feared by our current society. Nurses look at death as failure and therefore shy away from those dying patients whom they believe they have "failed." Death, the ultimate outcome of life, is at once a fact and a profound mystery. Two of the two and a half million persons who die annually in the United States are elderly many of which die in hospitals (Kirchhoff, 2000). Care of the dying is emerging as a major concern in the United States. Almost 80% of all American deaths now occur in healthcare institutions, and most deaths are the result of degenerative diseases, characterized by slow onset, extended decline, and multiple infirmities (Schwarz, 1999). Recent attempts have brought this important issue of death into people's consciousness and more efforts must be made to educate the healthcare community as well as the public about the importance of EOL care. This allows one to live the last stages of life with dignity.
Recent studies have shown that three out of every four patients dying from cancer experience significant periods of pain (Kirchhoff, 2000). Providing comprehensive care to the dying patient also means that nurses should be familiar with methods of treating distressing symptoms other than pain. These symptoms: dyspnea, anxiety, depression, gastrointestinal symptoms, anorexia/cachexia, delirium, and asthenia are common to the dying experience and are too often inadequately or poorly managed (Tomko, 2001). Improvement in positive communication techniques with the patient and family is another area that needs to be addressed. Nurses who care for seriously ill or dying patients face complex clinical situations that inevitably include profound human suffering. It could be a soul-wrenching experience for nurses to watch a patient day after day trying to cope with terrible pain or suffering. Researchers have indicated that nurses often lack the requisite knowledge and skill to effectively manage pain, despite their ethical obligation to do so. Nurses report that fear of hastening a death is secondary in their actions of administering care. Their primary motivation is to achieve adequate symptom control (Schwarz, 1999). Despite the increasing need for the provision of skilled EOL care; nurses are often unprepared to assume this important role.
There is little evidence of a coming together of providers from service delivery, education, and research. Consequently, those concerned with ensuring an optimal quality of life for persons dying or living with a life threatening illness are provided with little direction regarding their practice. There is an obligation to provide comprehensive and compassionate EOL care which includes the promotion of comfort and the relief of pain, and at times, foregoing life-sustaining treatments. Influence of managed care and lack of continuity of care were described as most ranked barriers to end of life care (Ferrell, 2000). Providing excellent care for a dying patient is something all patients deserve. It is important to remember that most patients want to prepare for death, if at all possible. Everyone does this his or her own way, but oftentimes concern about pain and symptom management interferes with this very involved and valuable process. Being prepared to treat these symptoms as well as addressing your patients’ emotional needs is imperative. In the end, there is much that we have to offer a dying patient. Efforts should not stop because the illness cannot be cured. So much can happen to someone in the window of time between terminal diagnosis and death. Making this period one in which a person is as mentally clear, physically comfortable, and symptom free for as long as possible is a goal that is worthy of our efforts.
The need for improvement in communication with patients and family, and the need of more education and support in nursing are important issues in providing EOL care. Nursing practice, education, and research must embrace and respond to these changing demographics, and nurses must focus on spiritual-psychosocial health as well as the physical health of the population (Heller, 2001). Undergraduate education provides the foundation for nursing care, including EOL care. Educational programs should focus on addressing the problem of stable misinformation. In addition, education should offer didactic information and role modeling to skillfully incorporate EOL care planning into clinical practice.
B. History of End-of-Life Care
Ancient hospices or hospitals (the two were one for a number of centuries) provided sanctuary for the poor wayfarer, the sick and dying, and the woman in labor, the orphan, the needy, and the religious pilgrim. Medieval hospices were generally run by religious orders, serving the Lord by serving His poor, His sick, and those in need of shelter. The Knights Hospitallers of the Order of St. John of Jerusalem in the twelfth century C.E. offered aid to pilgrims and the sick throughout Europe. If hospice workers were unkind to patients, or neglected them in any way, the workers were whipped and condemned to eat bread and water for a week (Buckingham 1996). The records of the Knights Hospitallers show their efforts to maintain their ideals and goals, despite increasing wealth and land holdings. At their hospice, or hospital in Rhodes, the incurably ill were sheltered and cared for apart from those with other illnesses, in a group of rooms reserved for travelers and pilgrims.
Dying was once viewed as a natural and expected part of life. Since, in the medieval worldview, life and death were each considered part of the same mortal process, pilgrims and travelers were housed together with the dying. All were on a journey, and therefore needed a place to stop for comfort. The news that the travelers brought them from the outside world was of value. The dying was also valued as individuals and as beings that were on the road to a higher plane of existence.
With the forced closure of monasteries in many countries during the Reformation, the concepts of hospice and hospital gradually became distinct. Today, the responsibility of caring for the sick and dying, formerly a private or religious one, has become a public or government function. The modern hospital increasingly has the look and feel of a laboratory. The bureaucracy needed to support the hospital system places increasing demands on the time and energy of medical and nursing staff as well as patients. The modern hospital, thought well equipped to aid in an acute, life-threatening situation, is seldom in a position to offer comfort to a traveler who is nearing his or her journey's end.
Now, after a lapse of several centuries, EOL care ideals are emerging again in the care for the dying and their families, due in large part to the work of Elisabeth Kubler-Ross in the United States. Two fundamental difficulties had to be faced: the American medical community's existing terminal care policy and the bureaucracy of contemporary health care. Many in the medical establishment expressed doubts at first, thinking that EOL care would be unacceptable in this country. Planners of EOL care were told that, "When Americans are sick, they want to be in an acute care hospital with all the technological advances available. Nobody wants to die in this country; the society isn't set up for it"(Buckingham, 1996). But, the response of patients and families has proven otherwise. A service emphasizing care rather than technology can be accepted by both lay people and professionals. Evaluation studies done between 1974 and 1976 show that EOL services measurably benefit patients and families.
The growth of the elderly population is a phenomenon that will continue well into the next century. There are more than 33 million individuals older than 65 in the United States and they represent the fastest growing segment of the population (Schlegel, 2000). Americans, especially older adults, value individual autonomy in health care decision-making and fear a diminished quality of life. We are witnessing an intense interest and demand by health care consumers seeking autonomous control and self-determination in medical decision-making. With the first Natural Death Act, legal guidelines have been enacted by states to address these concerns (Schlegel 2000). Health care providers are much better at saving lives than helping patients know when life is at its end. Nurses perpetuate the myth that not talking about death will keep it at arm's length. There is little evidence to suggest that patients and their families are well informed about EOL issues, or about their options for treatment and care. Research results indicate that nurses most often selected discussion of the dying process with patients and their families as the number one core competency about which they would like to have had more education (White, 2001). This finding is not surprising given America's cultural denial of death and the fear of dying. This denial is reflected in national initiatives for improvements in healthcare. During the previous decade, extensive literature has documented serious deficiencies in pain management. Studies often have identified inadequate education of professionals as a major barrier to improved pain management and palliative care (Ferrel, 1999). The SUPPORT Study (Study to Understand Prognosis and Preference for Outcomes and Risk of Treatments) revealed that dying patients experience considerable suffering and are victims of inappropriate use of medical resources. The fear of experiencing a “bad death” seems warranted by the conclusions of a 5-year study of EOL care received by 9,000 dying hospitalized patients (Tomko, 2001). Many people die long and painful deaths and receive unwanted, invasive medical attention. Some people die in a place where the fear of pain and loss of control and dignity become a burden to them and their families. The ideal environment would be one in which the patient and family would be able to plan ahead for the death and where the center of control is wrested back from the medical sphere and returned to the patient.
Now, more than ever, patients have the chance to spend their dying days cared for by an EOL care team. These teams could attempt to provide a secure environment for the patient where symptoms are expertly managed. Such teams could provide medical, emotional, and spiritual support to the patient as well as their family through a comprehensive, interdisciplinary approach to care.
Satisfaction at the end of life has been positively correlated with EOL care, where emphasis is placed on palliation. However, only about 20% of patients who die in the United States receive EOL care. This is in part related to the difficulty in accurately predicting prognosis and in part related to the discomfort surrounding discussing prognosis with patients (Tomko, 2001). Stable misinformation is another inadequacy identified which can be particularly resilient to educational strategies because people are unaware of their knowledge deficit and therefore do not seek accurate information. Continued efforts should be made to define and improve communication techniques in professional and continuing educational programs.
II. Focus Areas for Improvement Identified
Areas of spiritual-psychosocial health of dying patients have been identified as weaknesses among nurses in their fundamental education. One of the basic tenets of EOL care is the treatment of patient and family together. Death in acute care institutions has caused many families to come apart. EOL care helps to make death a coming-together. Approaching death can be a spiritual and psychosocial growth-filled experience for families. Nurses must facilitate communication among family members so that the remaining time can be as complete as possible. The closeness established between patient and family during a peaceful terminal phase can ease acceptance of death. The needs of the dying and their families are personal. The impersonal, highly specialized medical technology and the bureaucracy of the modem acute-care hospital do not often meet those needs. Research indicates that a significant difference exists in the mortality experience of grieving families, depending upon whether the patient died at home or in a hospital that does not utilize EOL care. The risk of the remaining relative dying within a year of bereavement was found to double if the first death occurred in a hospital not practicing EOL care rather than at home (Buckingham, 1996). Examination of focus areas identified for improvement in spiritual-psychosocial includes: anxiety, delirium, depression, and communication.
Anxiety is common in the dying, as patients face their fears and concerns about their impending death. However, anxiety is not a normal, inevitable consequence of dying and should be managed aggressively. Risk factors for anxiety include organic mental disorders, concurrent life events or social difficulties, lack of support and understanding from one's family and friends, and apprehension and worry.
The treatment of anxiety requires an adjunctive approach of spiritual- psychosocial support and pharmacotherapy. Providing support and a safe environment for discussing one's concerns and fears is very important.
Anxiety may respond to acupuncture and guided imagery with inclusion of relaxation therapy. In cases of intractable anxiety, a psychiatric consultation utilizing drug therapy may prove beneficial. Benzodiazepines are generally the medication of choice based upon the desired half-life. The longer half-life medications have a more sustained effect (Tomko, 2001).
One of the most difficult symptoms to manage in the dying patient is delirium. It is hard to diagnose and to treat, but it remains the most frequent neuropsychiatric disorder that affects the dying. Delirium is a state of decreased cognitive abilities. It usually has a quick onset and is considered to be a potentially reversible process. Changes in patients sleep and wake cycle occur with fluctuating levels of consciousness. Delirium can be divided into two categories: hypoactive and hyperactive. In hypoactive, patients become withdrawn, experience difficulty attending to tasks, or have acute problems with memory. In the hyperactive phase, patients experience psychosis with delusions, paranoia, and hallucinations. Patients with delirium have a higher morbidity rate than those without delirium. Approximately 30% of patients with delirium will experience improvement back to baseline. However, most will not have a found etiology and treatment will not improve their outcome.
The focus of care is often patient comfort. The first line of therapy will involve neuroleptics. Terminal anguish is a combination of delirium, anxiety, and debilitation that can occur shortly before death. It can be frightening for the patient and disturbing to the family. Keeping the patient comfortable, calm, and sedated should be the major goal of treatment. In this case, pain medication and anxiolytics should be used (Tomko, 2001).
Sadness is common in patients with life-threatening disease. It is a myth that feeling helpless, hopeless, and depressed is inevitable. Sadness usually responds to supportive interventions. Depression, on the other hand, is a pathologic state marked by greater cognitive impairment and generally requires more aggressive therapy. One should not discount the importance of therapy and counseling in the treatment of the depressed, dying patient.
The most frequently used drugs for depression are SSRI's but the patient may have to wait weeks to develop a therapeutic effect. Benefits of a class of drugs called psychostimulants are now being prescribed with more prevalence since they are safe and the rate of onset of action is very fast (Kirchhoff, 2000).
There is evidence that communication with the dying and their families is less than optimal, and that few nurses receive adequate training in appropriate communication skills. It has been concluded that nurses may neglect their communication with patients who are very ill, tending to rely instead on families to communicate with the dying. (Ross, 2000). The tendency to quietly forget to communicate with family and patients, once patients are stigmatized with the label “incurable”, can bring on a terrible sense of desolation. Patients and family members may become overwhelmed with hopelessness, withdrawing into loneliness and depression. Unfortunately, most nurses are uncomfortable counseling patients and families around EOL decisions because of barriers identified including: lack of knowledge, lack of practical experience, mistaken belief of emotional distress for patients and families associated with a discussion, and time limitations. Patients stated, "They are more comfortable with EOL discussions initiated by their caretakers than with eliciting the conversations themselves" (Ross, 2000).
Signs that the end may be approaching include: terminal breathing patterns, decreased urine output, inability to take in food and fluids, and declining cognitive status (Tomko, 2001). Talking to the patient and family members, letting them know how the patterns has changed, and giving them the opportunity to be with their loved ones and say goodbye or “I love you” is an important role that is often overlooked.
Healthcare professionals’ inadequate knowledge of physical health including: pain management, symptom control, and other dimensions of terminal-illness care have been cited as a key barrier to good EOL care. Nurses cannot practice what they do not know, and basic knowledge is contingent upon accurate, current, and comprehensive information provided through textbooks. Although most of the content present in the texts was relatively accurate and current, most EOL topics simply were not covered in texts (Schlegel 2000). Overall, nurses considered their basic nursing education inadequate preparation for EOL care. The vast majority rated their basic nursing education inadequate in all areas, but especially, pain relief (Ferrell, 2000). Clearly, changes in basic nursing education and more continuing education are keys to improving EOL care.
Nurse researchers have documented specific areas in which nurses lack information about pain assessment and relief. Studies have shown that pain often goes unnoticed or untreated (Ersek, 2000). Without expert, aggressive amelioration of symptoms, high quality care for those who are dying is impossible. Assessment of the patient in pain should include: non-pharmacologic and pharmacologic interventions. Additionally, nurses have long struggled with interpreting their professional role in relation to EOL care. They are mandated to relieve suffering and also to preserve life. Nurses have difficulty identifying a clear moral line through the tangle of contextual details that often surround their care of dying patients in pain (Fetter, 2000). The intent of comfort measures and medication administration in the dying patient should be to promote comfort and relieve suffering. Therefore, effective use of comfort measures and narcotics for the alleviation of pain is paramount.
Shortness of breath is a terrifying and common symptom in the dying patient. It is now recognized that dyspnea is a combination of many factors including disordered breathing due to a multitude of medical conditions, psychological issues, and functional problems. Treatment of dyspnea should address the underlying cause. Standards for treatment of dyspnea revolve around interventions involving oxygen, opioids, and benzodiazepines. Patients with chronic obstructive pulmonary disease will benefit from beta-agonist drugs and should be continued on their standing doses of inhalers. Patients suffering from end stage lung disease can receive relief from secretions from a dose of levsin or scopolamine (Tomko, 2001).
Nausea can be a frequent and unwanted companion of a dying patient. It is important to attempt to discover the etiology of the nausea to improve symptoms. The most common causes of nausea include autonomic dysfunction, gastroparesis, and opioid analgesics. Once the cause of nausea is assessed, drug therapy should be initiated to relieve discomfort. Many drug treatments of nausea exist. For patients without bowel obstruction, metoclopramide is beneficial because it acts centrally and aids in gastric emptying. When obstruction is present, and increased intestinal and gastric secretions accumulate, medications such as octreotide will help treat the accompanying nausea. Haloperidol and prochlorperazine act centrally to decrease nausea and are frequently used (Tomko, 2001).
The most physically remarkable aspects of the dying process are the weight loss and related change in appearance that many patients experience. This cachetic appearance is often alarming and is usually multifactor in cause. Anorexia and ataxia travel hand in hand. Weight loss decreases a patient's chance of extended survival and has a terrible effect on the morale and psyche of the patient and their loved ones (Tomko, 2001). The treatment of anorexia should be patient driven. If the patient requires encouragement for feeding and is still capable of eating, they should be offered food that they enjoy and find appetizing. Pharmacological measures include the use of corticosteroids and progestational drugs. Studies performed on these drugs in dying patients report improved appetite, less fatigue, and greater sense of well-being. Agents under investigation for the treatment of anorexia include thalidomide and omega 3 fatty acids.
Another extremely common symptom is the dying patient is asthenia. Asthenia can plague almost any person as they approach the end of their life. The definition of asthenia is profound tiredness after one performs usual or minimal effort. It is also characterized by generalized weakness. Treatment is based initially upon determining if any specific causes exist. Depression should be treated and if unsuccessful, non-pharmacologic management should be initiated. Energy conservation techniques should be explored and activities of daily living should be modified. If asthenia is still evident, corticosteroids or methamphetamines may be initiated (Tomko, 2001). These medications have a limited period of effectiveness, but the quality of time afforded the patient is well worth the trial.
A major deficiency in current nursing texts in the area of EOL care and consequently, deficiencies in nursing care of the dying exists. Although many examples of inaccurate information were found, the most significant deficiency was the absence of essential content on EOL care in curricula and texts (Ferrell, 1999). Nursing care should enable the terminally ill to continue as vital, functioning participants in life, and to maintain their identity and capacity to contribute as full human beings, with family support, until the end of their lives. Nurses rated the lack of nursing education in EOL care as an obstacle, but many may not realize the full benefits of an in-depth course in EOL care. A current study identified 87% of nurses stated that they care for dying patients in their current role; 28% said they never cared for a dying patient during nursing school. Most respondents (89.5%) believe that end-of-life content is important for basic nursing education. When asked how well their basic nursing education prepared them for providing EOL care, however, 71 % rated pain management education as inadequate, 62% rated overall content of EOL care as inadequate, and 59% rated management of other symptoms as inadequate. One-third of the nurses stated they received less than two hours of continuing education at their job site in EOL care (Ferrell, 2000). Nursing staff identified two major areas in which additional knowledge would be welcomed. These areas include: spiritual-psychosocial health areas and physical health areas. Education should focus on these areas. Although educators have begun to recognize the importance of EOL care education in nursing schools, few programs have specialties related to EOL care and continuing education is minimal and inconsistent. Because of this, EOL dilemmas are common in nursing practice and barriers exist in providing high quality EOL care.
Despite progress, practicing nurses face many dilemmas and barriers to providing high quality EOL care. Changing educational curricula and continuing professional education is the first step toward changing practice. Although efforts are being made to improve curricular content regarding EOL care, practicing nurses have varying exposure to basic education and continuing education for effective EOL care outcomes.
To achieve consistent high quality EOL care practices, I believe that the following core competencies should be incorporated into course curricula and continuing education classes as recommended by the American Association of Colleges of Nursing. These competencies address the major deficiencies cited as focus areas for improvement that encompass spiritual-psychosocial health and physical health.
Competencies Necessary for Nurses to Provide High-Quality Care to Patients and Families during the Transition at the End of Life
- Recognize dynamic changes in population demographics, health care economics, and service delivery that necessitate improved professional preparation for end-of-life care.
- Promote the provision of comfort care to the dying as an active, desirable, and important skill, and an integral component of nursing care.
- Communicate effectively and compassionately with the patient, family, and health care team members about end-of-life issues.
- Recognize one's own attitudes, feelings, values, and expectations about death, and the individual, cultural, and spiritual diversity existing in these beliefs and customs.
- Demonstrate respect for the patient's views and wishes during end-of- life care.
- Collaborate with interdisciplinary team members while implementing the nursing role in end-of-life care.
- Use scientifically based standardized tools to assess symptoms (e.g., pain, dyspnea, gastrointestinal symptoms, anorexia/cachexia, asthenia, anxiety, delirium, depression, and communication barriers) experienced by patients at the end of life.
- Use data from symptom assessment to plan and intervene in symptom management using state-of-the-art traditional and complementary approaches.
- Evaluate the impact of traditional, complementary, and technological therapies on patient-centered outcomes.
- Assess and treat multiple dimensions, including spiritual-psychosocial and physical needs to improve quality at the end of life.
- Assist the patient, family, colleagues, and one's self to cope with suffering, grief, loss, and bereavement in end-of-life care.
- Apply legal and ethical principles in the analysis of complex issues in end-of-life care, recognizing the influence of personal values, professional codes, and patient preferences.
- Identify barriers and facilitators to patients' and caregivers' effective use of resources.
- Demonstrate skill at implementing a plan for improved end-of-life care within a dynamic and complex health care delivery system.
- Apply knowledge gained from palliative care research to end-of-life education and care.
The purpose of these competency statements is to assist nurse educators in incorporating EOL content into nursing curricula (AACN, 2001). The competencies were developed with the understanding that few schools of nursing offered a discrete course in EOL care. Thus, the competencies offer an approach to incorporating EOL content throughout the currently existing curriculum.
A deficiency in current nursing texts in the area of EOL care also exists. Quantitative results show only 2% of content related to EOL care (Ferrell, 1999). To strengthen nursing education in EOL care, I believe that revision of texts based on this analysis will help accomplish this goal. Texts devoted to overall EOL care including current research and clinical practice advances must be incorporated by publishers in future editions. Revision of texts is a major endeavor requiring considerable time until new editions are published with improved EOL content. Using supplemental materials for EOL care until adequate content is available in texts will be important for educators.
The concept of EOL care practices is once again at the forefront of public and healthcare consciousness. Historically, EOL care was depicted as an important aspect of the life process, although it was not well advanced. The trend to provide heroic measures using technological advances in the 1900's, stunted the exploration of EOL care and left patients and families feeling abandoned. Today, there is resurgence toward focusing on EOL issues utilizing advanced research and technology to provide comfort measures to the dying. Although, nurses are not performing optimally, since they are not well educationally prepared.
Two major focus areas for improvement have been identified as spiritual- psychosocial health areas and physical health areas. The spiritual-psychosocial health areas encompass: anxiety, delirium depression, and communication. Physical health areas include: pain, dyspnea, gastrointestinal symptoms, anorexia/cachexia, and asthenia.
Recommendations for improved EOL nursing care outcomes have been identified as improvement in curricular content and continuing education utilizing care competencies, and revision of texts, which incorporate current research, to enhance EOL care. Achieving these objectives will take the collective effort of publishers, researchers, educators, and nurses. Tremendous opportunity exists in the next decade to change EOL care. The strengthening of nursing education certainly is an essential step toward meeting that goal. This will provide a more comprehensive and compassionate approach in the delivery of EOL nursing care.
We often think of the dying as “them” and the living as “us,” as if we were separate. Among the benefits of caring for a dying patient is the erasure of this distinction. We are all on the same journey, come from the same entrance, and leave by the same exit. We are all wayfarers on the road, and all of us need to stop for refreshment and comfort before the end of our journey. With advancement in EOL care, we will have a choice about how we would like that stop to be.
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