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CHAPTER 1 ISSUES IN PALLIATIVE CARE COMMUNICATION, TRANSITION, AND END-OF-LIFE MEDICAL CARE (7 CONTACT HOURS) Learning objectives Upon completion of this course, the reader will be able to:!! Identify
CHAPTER 1 ISSUES IN PALLIATIVE CARE COMMUNICATION, TRANSITION, AND END-OF-LIFE MEDICAL CARE (7 CONTACT HOURS) Learning objectives Upon completion of this course, the reader will be able to:!! Identify the primary goals of palliative care.!! Explain the role of effective communication in palliative care and provide an example.!! List and distinguish between medical and psychosocial elements of advance care planning.!! List some of the most important considerations in a discussion of palliative care; explain the significance of location, timing, people to include and possible repercussions.!! Name the members of the interdisciplinary team involved in palliative care and identify the primary responsibilities of each.!! Define palliative care and explain the meaning of hospice.!! List some of the issues in a comprehensive assessment for home care.!! List alternatives to home care and describe the resources associated with each.!! Explain the principle of deliberation, the rule of double effect, and the principle of proportionality, and the significance of each in relation to palliative ethics. Strategies and goals of palliative care [74] Palliative medicine seeks to provide the best quality of life for patients and families using a model in which the goals of care are collaboratively developed with care providers according to the wishes of patients and families. This model emphasizes communication, collaboration and the willingness to accept patient-focused outcomes as paramount and to respect patients wishes regarding such important issues as quality of life or cessation of therapy. The following statements summarize some of the key aspects of the philosophy of palliative medicine: Core elements of palliative care: [68] Emphasizes comprehensive care of the whole patient, inclusive of medical, psychosocial and spiritual concerns. Depends on effective communication and relationship building within a model of diverse expertise and interdisciplinary teamwork, not an authoritative hierarchy. Goals of care include relief of suffering, control of symptoms and restoration of functional capacity. Supports neither the goal of cure nor the hastening or prolonging of death. Considers patients subjective experience (e.g., pain, other symptoms) to be as important as objective clinical data. Diagnosis is not a predetermined goal; it is only pursued if it conforms to patientdetermined goals of care. Death is not equated with defeat but rather is seen as natural conclusion of life; response of the health care worker should be to comfort, not withdraw. Management plan is tailored specifically to each patient, according to patient s values and preferences, not decided unilaterally by a physician. This palliative philosophy comes from a model of care that is distinctly different from the familiar, hierarchical and physician-dominated model that characterizes much of contemporary medical care, especially for diseases that have potentially effective therapies. Focusing on the patient and family-centered goals of care ensures that decisions will be made that do not violate important concerns of the patient and family. Curative, palliative, or both types of interventions can be offered, not unilaterally and driven by diagnostic or treatment algorithms but rather collaboratively and driven by the priorities and values of the patient and family. All scenarios above involve decisions that need to be informed both by medical evidence and risk-benefit analysis as well as by the priorities, values and preferences of patients and families. In all these scenarios, it should be clear that decisions must be based on the specific goals of care, including such factors as: The relative values of quality of life or prolongation of life. The use of aggressive palliative care interventions to help mitigate side effects of specific medications. The use of certain disease-specific therapies primarily for palliative or quality-of-life intent. The decision not to prolong life no matter what, once a certain important threshold had been reached (e.g., progressive dementia or the inability to manage oral feedings or medications). Advance care planning The focus on goals of care incorporates the concept of advance care planning, which includes both medical and psychosocial elements. Medical aspects may include: Decision-making about the risks and benefits of specific therapies (e.g., anti-retroviral therapy, chemotherapeutic regimens, etc.). The importance of quality-of-life elements in these decisions (e.g., the choice of a potentially toxic, time-intensive intervention that might prolong life versus more palliative measures that would improve short-term quality of life but not extend it). Decisions about particular medical interventions (e.g., cardiopulmonary resuscitation, artificial nutrition or hydration, rehospitalization of a patient being cared for at home). Psychosocial issues that need to be addressed may include: Family ambivalence or conflict about care plan decisions. Elite Page 1 Guilt or other emotional unfinished business that may affect decisions regarding care planning. Concerns that any limitation on curative treatment interventions may represent abandonment of the patient or lack of commitment or concern on the part of the care provider. Discussions about advance care planning should be ongoing, anticipatory, and re-visited on multiple occasions as needed over time. These issues should be normalized as much as possible and incorporated into routine care, rather than waiting until a crisis, such as an acute life-threatening illness or the loss of decisional capacity, to begin to address them. It may, in fact, be an indication of the discomfort that providers feel within the either-or framework of curative versus palliative care that they may unconsciously defer these discussions until the patient is precipitously dying, implying that discussing goals of care and end-of-life decision making is somehow inappropriate within the current therapeutic model. However, the approach to these issues needs to be positive, respectful and focused on the values, concerns, cultural beliefs and care preferences of the patient and family. The family and/or other involved individuals need to be included earlier rather than later in these discussions, and decisions about health care proxies and other surrogate decision-makers need to be made clearly and communicated to the designated individuals. The role of the health care team in communication about palliative care [77] The health care team is made up of a number of health care professionals, including physicians, nurses, social workers and others. Different team members may play varying roles in different settings. It is important that all team members who are directly involved in communication with patients and their significant others be aware of all communication about end-of-life care. Consensus within the team is an important step in the process of making decisions about withholding or withdrawing life-sustaining therapy regardless of whether the setting is an intensive care unit, hospital ward or outpatient setting. Of the few legal cases brought against health care providers for end-of-life decisions, most have been initiated by disgruntled colleagues. In addition, it is important that all team members are informed about the medical situation and plan of therapy so that patients and their significant others do not receive conflicting messages from different staff members. Acute care nurses play a pivotal role in health care worker-significant other communication in the acute care settings. [73, 102, 126] Significant others rate the nurses skill at this communication as one of the most important clinical skills of nurses. [48, 95, 130, 153] In a meta-analysis of studies assessing the needs of significant others who have a loved one in intensive care, 8 of the 10 needs identified relate to communication with health care workers, and the majority of these communication needs are primarily addressed by the nurses. [95] In the outpatient setting, nurses, nurse practitioners and physicians assistants also may play an important role. However, there are data to suggest that nurses are not better at communication about end-oflife care than physicians [118] and, in fact, in the outpatient setting, nurse practitioners and physicians assistants may actually not do as well as physicians in communication about the end of life. [44] Consequently, it is likely that nurses, nurse practitioners and physicians assistants could also benefit from efforts to improve the quality of this communication. In acute care settings, social workers often play an important role in identifying and contacting significant others, coordinating and scheduling family conferences, and keeping in contact with significant others during the hospital stay. This is a very important role in providing sensitive care and in communicating with patients significant others. The person filling this role should be aware of the medical prognosis and plans and be an active part of the health care team. In the outpatient setting, social workers may be the ones primarily responsible for many of these discussions with patients and consequently need to develop the same skills and expertise in this communication. The role of culture and ethnicity in communication about palliative care Culture and ethnicity are important factors to consider in patient-health care worker communication, and cross-cultural dynamics may be especially important in discussing palliative care for patients. It will be important to identify the barriers to communication unique to these patient groups and individuals. Health care workers should be aware of the diversity of barriers that may exist for patients from different cultures and be open to discussing these barriers openly with patients. [42, 43] When to talk about palliative care It is impossible to be prescriptive about the right time to discuss palliative and end-of-life care, except to say that we should talk about it earlier than we usually do. Often, health care workers, particularly physicians, wait until they have decided that life-sustaining treatments are no longer indicated before they initiate communication about palliative and end-of-life care with patients or their significant others. Patients and significant others may be just beginning to think about withdrawing lifesustaining treatments while health care workers are feeling increasingly frustrated at providing care they believe is no longer indicated. Alternatively, the patients and significant others may be considering withdrawal of life-sustaining treatments well before the health care team. The team members may also vary in the timing with which they believe that life-sustaining therapy should be withheld or withdrawn. In the acute care setting, nurses often come to this conclusion earlier than physicians, which can lead to extreme frustration for some nurses [2, 3] Page 2 and interdisciplinary conflict for physicians and nurses. A potential solution to this difficulty is to begin discussions with the health care team, patients and significant others early in the course of a chronic illness. However, early in the course of care, these discussions may focus on prognosis, goals of therapy and the patients values and attitudes toward medical therapy. These early discussions may foreshadow or set the stage for subsequent discussions about transitioning to palliative care goals or about withdrawing or withholding life-sustaining treatments. These discussions can also be a way for health care workers to let patients and their significant others know that palliative care and end-of-life care are important topics that the health care worker is willing to discuss. How to talk about palliative care Because discussing palliative care with patients and their significant others is an important part of providing high-quality care for patients with lifethreatening diseases, these discussions should be approached with the same care and planning that are given to other important medical procedures. For example, 1) Time and thought should be put into the preparations needed prior to holding this discussion; 2) The location of the discussion should be planned; 3) If possible, a preliminary discussion should be held with the patient about who should be present and what will be covered during the discussion; and 4) What is likely to happen after the discussion should be anticipated. These four issues address the processes that ideally should occur before, during and after the discussion. Table 1 outlines some of the steps that may facilitate good communication about palliative care, and these are described in more detail below. Table 1: Components of a discussion about end-of-life care [84] I. Making preparations before a discussion about end-of-life care. Review previous knowledge of the patient and/or their significant others. Review previous knowledge of the patient s attitudes and reactions. Review your knowledge of the disease prognosis, treatment options. Examine your own personal feelings, attitudes, biases and grieving. Plan the specifics of location and setting; choose a quiet, private place. Have an advance discussion with the patient or family about who will be present. II. Holding a discussion about end-of-life care Introduce everyone present. If appropriate, set the tone in a nonthreatening way: This is a conversation I have with all my patients... Find out what the patient or significant other understands. Find out how much the patient or significant other wants to know. Be aware that some patients do not want to discuss end-of-life care. Discuss prognosis frankly, in a way that is meaningful to the patient. Do not discourage all hope. Avoid temptation to give too much medical detail. Make it clear that withholding life-sustaining treatment is not withholding caring. Use repetition to show that you understand what the patient or their significant other is saying. Acknowledge strong emotions and use reflection to encourage patients or their significant others to talk about these emotions. Tolerate silence. III. Issues that may be of special importance for some patients. If patients have strong treatment preferences, discuss a living will or other advance directive. Consider durable power of attorney and the importance of having discussions of treatment preferences, goals and values with that person. Discuss cultural or religious views, attitudes and preferences. Consider discussing preferences regarding place of death and preferences regarding burial or cremation. IV. Finishing a discussion of end-of-life care. Achieve common understanding of the disease and treatment issues. Make a recommendation about treatment. Ask if there are any questions. Make a basic follow-up plan and make sure the patient and/or significant others know how to reach you for questions. Making preparations before the discussion A common mistake that some health care workers make is to embark on a discussion about palliative care with a patient or significant others without having made the necessary preparations for the discussion. Health care workers should review what is known about the patient s disease process, including the diagnosis, prognosis, treatment options and likely outcomes with different treatments. They should identify gaps in their knowledge by systematically reviewing this information and seek out the information they need before they find themselves in a discussion with patients or their significant others. Health care workers should also be aware of the communication that has occurred with other team members and of the plans for care established or agreed upon by any other care provider responsible for the patient s care. It is also important for health care workers to review what they know about the patient and his or her family and social support network, including their relationships with one another; their attitudes toward illness, treatment and death; and their prior reactions to information about illness and death. If, for example, there are significant others who have had strong emotional reactions to bad news, it may be helpful to Elite mobilize the aid of a family member, friend or staff member, such as a social worker or chaplain, who can support them through and after the discussion with the health care worker. Finally, it is useful for health care workers to consider their own feelings of grief, anxiety or guilt before holding a discussion about palliative care with patients or significant others. This may be especially important when the health care worker has known the patient or significant others for a long time, when the health care worker and patient or significant other have been through a lot together, or when the health care worker has some feelings of inadequacy about the patient s condition or treatment. Acknowledging these feelings explicitly can help the health care worker avoid projecting his or her own feelings or biases onto the patient or the significant others. In addition, the health care worker s own feelings of guilt or inadequacy can lead him or her to avoid the patient or significant others or to avoid talking with them about death. Reviewing these feelings by oneself or with another health care worker can be the first step to becoming more comfortable discussing dying and death with a patient or significant other. [16, 198] An additional step in preparing for an end-oflife discussion is to plan where the discussion will take place and who will be there. Ideally, these discussions should take place in a quiet and private room where there is some assurance that people, phones or pagers will not interrupt the discussion. It should be a room that is comfortable for all the participants without a lot of medical machinery or other distractions, such as medical diagrams. All parties should be sitting at the same level around a table or chairs in a circle. It is best to avoid having a health care worker sitting behind a desk with the patient and significant others in front of the desk. If the patient can participate in the discussion but is too ill to leave the hospital bed, efforts should be made to make the room comfortable for everyone present. Before the scheduled conference about palliative care, the health care worker, patient and significant others should discuss who should be present for the conference. In addition, the health care worker should make certain that all appropriate members of the staff are consulted about whether they should be present, including the medical staff, nursing staff, chaplains and trainees who have been involved with the patient or significant others. Ideally, someone should take responsibility for scheduling the conference at a time when as many as possible can be present. It may be helpful to suggest that patients and their significant others write down any questions they have beforehand to be sure their questions are answered. Holding a discussion about palliative and end-of-life care The first step in a discussion about palliative and end-of-life care is to ensure that everyone participating in the discussion has met everyone else present. For example, some staff members present for the discussion may not have met all family members or significant others. Take the time to go around the room to be sure everyone has met everyone else and knows their role either on the staff or in the patient s life. Introducing the issue of palliative or end-of-life care can be a crucial and difficult part of these discussions. Often, by the time these discussions occur, everyone involved knows that the discussion will focus on how to help the patient transition to palliative care goals or even to die in comfort and with dignity. But sometimes patients or their significant others may not be aware that this is a part of the health ca
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