Communication near the End of Life

Communication near the End of Life Communication near the End of Life Question: Write one page abstract on each article (see below instructions regarding abstracts) and a summary on each article. So, for each article there must be a one-page abstract and a separate summary of the article Abstract: An abstract is a summary in your own words, of an article, chapter, or book. It is not evaluative and must not include your personal opinions. The purpose of an abstract is to give a reader sufficient information without reading the entire article or book. An abstract should aim at giving as much information as possible in as few words as possible. Communication near the End of Life The abstract should include: Complete bibliographic information A clear statement of the scope and purpose of a work A summary of the contents A statement of the conclusion or results palliative_care__1.pdf end_of_life_communication__2.pdf ORDER NOW FOR CUSTOMIZED AND ORIGINAL ESSAY PAPERS Palliative care: Are you asking the right questions? By Maryann Steed, MSN, RN, CHPN, OCN MANY PATIENTS AND FAMILIES living with chronic health conditions and prolonged debilitation struggle to decipher complex medical situations and deal with multiple financial, ethical, and practical dilemmas. Nurses must proactively engage in discussions to elicit and identify patient preferences and concerns regarding palliative care issues, such as management of pain and other symptoms, spiritual needs, and end-of-life care. However, many nurses don’t feel competent or confident when communicating with patients and families about these sensitive issues. This article provides nurses with six questions to ask at critical junctures when clinical conditions change or decisions that guide care must be explored. They stem from the characteristic indicators associated with the provision of quality palliative care: an emphasis on communication; identification of patientcentered goals; and attention to physical, psychological, and spiritual aspects of care.1 These questions can serve as a framework for incorporating awareness of palliative care issues into daily nursing practice. Focus on quality of life Palliative care is an approach to providing care that focuses on improving the quality of life for patients and their families in the face of life-threatening illness, considering the physical, psychological, and spiritual concerns that may pany such conditions.2 Although palliative care is often associated with hospice care, which shares many similar principles, they’re not the same. Palliative care can be provided regardless of the disease stage along with life-prolonging therapies, consistently striving to appreciate and recognize a patient’s journey along the trajectory of illness and how the journey may change over time.2 It’s also in place to provide comfort and support when medical therapies are no longer effective and death is imminent, ensuring that patients and families are aware of alternatives to active treatment that support personal values and preferences. In contrast, hospice care focuses on quality care during the last phases of life for those estimated to have a life expectancy of 6 months or less and who are no longer seeking curative treatments.3 Focusing on individual concerns helps the patient and family make decisions as they experience the physical and emotional elements that often occur in the face of serious illness. Use the following questions to explore patients’ wishes and preferences for care.1 1. Does the patient have advance directives? Advance directives are legal documents that address actions to be taken regarding a patient’s care if he or she can no longer make deci- sions due to illness or incapacity. It often consists of two parts: a living will that addresses specific interventions (such as wishes regarding resuscitation and artificial nutrition and hydration) that the patient accepts or declines at end of life, and another document that identifies a legal surrogate to help direct medical care on the patient’s behalf if he or she can no longer participate in decision making. Depending on the date of origination and state of residence, this document can be identified by various designations, such as healthcare proxy, healthcare representative, or durable power of attorney for healthcare decisions. These documents can exist separately, but completing both of them provides the most comprehensive guidance for care. Consistent with the palliative principle of focusing on communication and guiding care according to patient preferences and values, nurses must be aware of their patients’ wishes regarding life-sustaining treatment before they become incapacitated. Nurses must be able to communicate information regarding advance directives, inform patients or their surrogate decision makers of options, and explain ramifications of subsequent decisions. 2. What are the goals of care? Palliative medicine focuses on providing accurate information to patients and families in order to October l Nursing2012 l 59 Copyright © 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. provide timely treatments and therapies that are medically appropriate and consistent with patient preferences.2 Identifying the goal of care allows the healthcare team to understand what’s most important to the patient and to organize a care plan that supports that goal.Communication near the End of Life Examples of goals include curing disease, restoring the patient’s condition to a previous baseline, prolonging life to attend a graduation or wedding, avoiding pain and controlling symptoms, and allowing the patient to die naturally, in his or her own time without excessive medical interventions.4 Several goals may exist concurrently, and they should all work together to support the direction of care. Once the goals of care are determined, appropriate interventions to support them should be instituted. For example, if a goal of care is to prolong life and a patient can’t maintain his respiratory status, the use of a mechanical ventilator may be employed to support this goal. But if the goal of care is to allow a peaceful death rather than to prolong life, the use of a ventilator, a life-prolonging intervention, would probably not be included. By understanding a patient’s overall goal, nurses can not only support the patient and family, but also help guide the healthcare team in what may or may not be appropriate for that patient. It’s essential to understand the “big picture” of a patient’s illness and what a patient is hoping to accomplish, always in the context of what is or isn’t medically possible. 3. Has the patient’s resuscitation status been reviewed? Code status is a healthcare provider’s prescription that specifically addresses the provision of resuscitative efforts in the event of a cardiac or pulmonary arrest. If a do-notresuscitate (DNR) order is in effect, CPR shouldn’t be initiated. However, DNR status doesn’t mean that no 60 l Nursing2012 l October other therapeutic interventions may be utilized, or that a person will be “left to die.” This is a common misconception that nurses must clarify for patients and families. Make sure they understand that the patient won’t be abandoned and will continue to receive optimal comfort care from the healthcare team to control pain and other symptoms. Nurses must be familiar with the concepts surrounding DNR orders so they can clarify issues and correct any misconceptions patients and families may have. While nurses aren’t responsible for initiating DNR orders, it’s within their scope of practice to recognize when DNR issues haven’t been addressed and alert the appropriate provider. Good communication and adherence to patient preferences remain central to providing effective palliative care. 4. Are distressing symptoms adequately controlled? Signs and symptoms associated with chronic illness and end of life can be particularly distressing for both patients and families and a source of needless suffering if left uncontrolled. Pain, nausea, dyspnea, delirium, and anxiety can be effectively managed with various treatments, yet too often they’re unrelieved due to lack of awareness and proper management by the healthcare team. Effective symptom management should be pursued and incorporated into the care plan for all patients. Symptom burden associated with chronic illness can change over time, and nurses can directly influence this experience for patients. Through keen observation and diligent assessment and by remaining open and sensitive to cues offered by both the patient and the family, such as changes in familiar behavior or patterns, nurses can help prevent and provide relief of pain and other distressing symptoms. 5. Does the patient and/or family feel that communication is adequate? Fragmented and poor communication between patients and families and their healthcare providers is a concern that’s been highlighted in many forums.5 Poor communication contributes to making uninformed choices and may be a source of fear, suffering, and added stress. Continuity is often lacking in today’s healthcare delivery system, where many patients are exposed to various specialist providers and receive care in a number of environments. Patients and families may find themselves in situations where complex medical issues and unfamiliar treatment approaches are quickly presented in a manner that they find difficult to understand. Good communication is essential for effective palliative care because it encourages patients to voice their preferences and establish an individualized goal of care. At times, questions and worries that the patient may harbor are different from things being addressed by the healthcare team. Nurses can act as a bridge between the patient and the rest of the healthcare team, interpreting medical terminology and providing education on diagnoses and treatments, as well as representing and supporting patient values and eliciting concerns. Nurses are also in a position to help patients verbalize thoughts and wishes to their family. These oftenemotional situations require a delicate approach and sensitive negotiation. Communication near the End of Life 6. Are the patient’s spiritual needs addressed? Spirituality, which may or may not incorporate a patient’s religious or cultural beliefs, is a human component through which individuals attach meaning and value to their life experience.6 For many patients, spirituality plays a key role in their approach to health, attitude toward Copyright © 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. illness, and choice of treatment options. Lack of understanding of a patient’s spiritual views may cause tension between the healthcare team and the patient, whose decisions may be heavily influenced by these viewpoints. Palliative care recognizes the role spirituality plays in the illness experience and how spiritual concerns can influence a patient’s values, preferences, and goals. Nurses aren’t expected to be experts in spiritual counseling, but through understanding and attention, they can recognize influences that affect a patient’s values and end-of-life decisions. Nurses must learn to formulate their own thoughts and attitudes regarding spirituality to best incorporate this dimension of care into their practice. They can also enlist the help of other appropriate healthcare professionals or clergy to help the team address the patient’s spiritual needs or concerns. Ask questions, know your patient When nurses become familiar with palliative care issues, they can incorporate these principles into practice to improve the quality of patient care. Following the framework of questions presented here, nurses should feel empowered to confidently initiate dialogue that elicits meaningful details to support patient goals and guide individualized treatment strategies. ? REFERENCES 1. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2nd ed. 2009. http://www.nationalconsen 2. World Health Organization. WHO Definition of Palliative Care. definition/en/. 3. National Hospice and Palliative Care Organization. About hospice and palliative care. http://www.nhpco. org/i4a/pages/index.cfm?pageid=4648/. 4. Casarett DJ, Quill TE. “I’m not ready for hospice”: strategies for timely and effective hospice discussions. Ann Intern Med. 2007;146 (6):443-449. 5. Hancock K, Clayton JM, Parker SM, et al. Truthtelling in discussing prognosis in advanced lifelimiting illness: a systematic review. Palliat Med. 2007;21(6):507-517. 6. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care. The report of the Consensus Conference. J Palliat Med. 2009;12(10):885-904. Maryann Steed is a Clinical Leader, Palliative Medicine Consult Service, Hartford Hospital, Hartford, Conn. The author has disclosed that she has no financial relationships related to this article. DOI-10.1097/01.NURSE.0000418787.36065.c7 October l Nursing2012 l 61 Copyright © 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. MEDSURG NURSING SERIES CNE Objectives and Evaluation Form appear on page 297. Challenges and Opportunities: Communication Near the End of Life Donna M. Gauthier While the nurse works on developing communication skills with the dying patient and his or her family, the goal should be to build an understanding of the patient and family’s needs and goals. The principles and value of good communication near the end of life are reviewed. Practical approaches and suggestions for medical-surgical nurses to improve communication are provided. Donna M. Gauthier, PhD, RN, is an Assistant Professor, College of Nursing and Allied Health Professions, University of Louisiana at Lafayette, Lafayette, LA. She serves locally on the Compassionate Care Coalition, an organization with a mission to advance quality end-of-life care; and is a member of The Hospice and Palliative Nurses Association. Note: The author and all MEDSURG Nursing Editorial Board members reported no actual or potential conflict of interest in relation to this continuing nursing education article. MEDSURG Nursing—October 2008—Vol. 17/No. 5 J ohn Gunther’s 1949 memoir Death Be Not Proud describes his and his wife’s efforts to keep hope alive for their son who was diagnosed with a malignant brain tumor. Not talking about the seriousness of their son’s illness was thought to be a good thing. Upon reflection, however, Frances Gunther stated: It was only after his death, from his brief simple diaries… that we learned he had known all along how grave was his illness, and that even as we had gaily pretended with him that all was well and he was completely recovering, he was pretending with us, and bearing our burden with the spirit of a singing soldier or a laughing saint (p.189). Today, more than 50 years after Gunther’s moving words, the practice of avoiding discussion of terminal illness and impending death still occurs. As the patient and family members struggle to cope with terminal illness, most of them will attempt to maintain a sense of cheerfulness and normalcy throughout the treatment phase. However, it is important to acknowledge that having a terminal illness is not easy and it does not create cheerfulness. Communication near the End of Life Because cultural and ethnic differences can complicate the communication process further, nurses should recognize that communication with each patient and family is a unique experience. Evidence suggests that the terminally ill and dying patient desires open, honest communication with others (Barclay, Blackhall, & Tulsky, 2007). Several basic attitudes and behaviors can assist a nurse when communicating with the patient who is terminally ill and the patient’s family. Openness, honesty, and understanding are foundations to this communication; thoughtful communication is based on awareness that life does not last forever and the end is drawing near. Care on the Medical-Surgical Unit One of the most important elements of end-of-life care from the perspectives of the patient and family members is honest communication (Heyland et al., 2006). Traditionally, nurses have viewed communication with dying patients and families as the purview of physicians. Additionally, speaking about dying to those who are near death is challenging for even the most talented and experienced nurse. Many challenges on a busy medical-surgical unit create barriers for adequate or effective communication with a patient diag291 SERIES Challenges and Opportunities: Communication Near the End of Life Table 1. Common Myths: Communication About Dying Dying patients and family members only want to talk about positive things. Asking patients questions about dying will remove all hope. Patients and family members don’t want you to ask questions about dying and loss. When a patient is dying, there is little health care professionals have to offer. Sources: Knauft et al., 2005; Kristjanson, 2001. nosed with a life-threatening illness. Diagnostic studies typically are conducted daily in the setting. Findings indicating a terminal illness or poor prognosis are communicated to a patient by the physician, not the nurse. Barriers to patient-nurse communication begin when the nurse is unaware of what has been communicated to the patient and/or family by the physician. Misunderstandings and miscommunication between and among clinicians can complicate sensitive situations and frustrate patients and family members (Schirm & Sheehan, 2005). A common myth is that discussing dying and death will diminish the patient’s hope (Knauft, Nielsen, Engelberg, Patrick, & Curtis, 2005). (see Table 1). Because needs of the dying patient often involve emotional issues that the medical-surgical nurse cannot “fix,” avoidance can become the nurse’s mode of operation and communication. Research indicates that nurses generally have a high level of apprehension in caring for dying patients (Weigel, Parker, Fanning, Reyna, & Gasbarra, 2007). This apprehension, together with potential lack of experience in practical communication approaches and techniques, can lead the nurse to feel at a loss for words. In addition to not knowing what to say, the nurse may experience the added burden of balancing what the doctor has told the patient with the reality that death appears imminent. On a busy medical-surgical unit, the nurse may find it difficult to round with each physician visit- 292 ing each patient. However, to stay abreast of information being shared between physicians and patients, nurses should consider the act of rounding with physicians as an invaluable tool for communication and patient advocacy. When this is not possible, other strategies can be used. Briefly reviewing daily progress notes helps the nurse gain information about what has been discussed with the patient and/or family members. Another way to open the lines of communication is to state to the patient, “I noticed the doctor was speaking with you. Do you have any questions about your discussion?” Such an approach usually is more effective than directly asking, “What exactly did the cardiologist tell you?” Because the patient and family may be trying to decipher the physician’s comments, asking that question may place additional stress on them (Penson, Kyriakou, Zuckerman, Chabna, & Lynch, 2006). Not knowing what the primary physician and other health care providers have communicated to a patient or family member can place the nurse in an awkward position. Unclear communication can lead to frustration on the part of the patient and family as well as the nurse. Family members often approach the nurse to ask what they should do, as the following case illustrates. Mr. A., who has advanced pancreatic cancer, is experiencing distressing persistent ascites, dyspnea, and pain. His daughter and his wife have been his major care- takers. The daughter asks the physician for his opinion of his father’s condition, and the doctor responds, “Your father’s condition is terminal and no treatment will cure his condition. Something might be done to prolong his life, but nothing will fix him.” When the patient’s nurse enters the room several minutes after the physician has left, his daughter asks, “The doctor just said there’s nothing left to do for my father. What should we do?” Family members often are not asking about specific steps to take as much as indicating an overwhelming need for more information and support. 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