Palliative Care Core Skills and Clinical Competencies, Second Edition

Palliative Care Core Skills and Clinical Competencies, Second Edition Linda L. Emanuel, and S. Lawrence Librach Chapter 39, 552-569 Copyright 2011, 2007 by Saunders, an imprint of Elsevier Inc. Chapter 39 Palliative Care Nursing The (nursing) profession taught me so many lessons about the fragility of life, the importance of being mindful about the way you live, the need for appreciation of life's beauty and bounty while you are still healthy, and perhaps, most importantly, the worth of unconditional positive regard, which is the way we were taught to approach our patients. Elizabeth Berg, RN. The nursing specialty of palliative care has recently emerged. Its goals are to improve quality of life and symptom management, caring for the physical, emotional, and spiritual needs throughout the trajectory of illness. Nursing has provided leadership in the development of this specialty by defining the scope and standards of palliative nursing practice at both the generalist and advanced practice levels. The standards of palliative nursing practice can be applied to any care setting; they can be integrated into general patient care or used to guide specialist palliative care practice. Hospice programs currently provide the best example of structured, regulated palliative care. Future trends include the continued development and standardization of palliative care in inpatient and ambulatory care settings. These trends will likely drive the need for more advanced practice palliative care nurses (APNs) and improve palliative care for all. Nursing Contributions Dame Cicely Saunders, who started her career as a nurse, was the founder of the modern concept of hospice care; she opened St. Christopher's Hospice in Great Britain in 1967. She was instrumental in developing the core principles that provide the basis of all palliative care today. Her interest in care of the dying began when she was a volunteer nurse. Dame Cicely subsequently obtained a degree in social work and went on to become a physician before directing St. Christopher's Hospice. Florence Wald, a nurse, brought hospice care to the United States in 1974; she founded Connecticut Hospice in Branford, Connecticut, the first US hospice. A former Dean of the Yale University School of Nursing in New Haven, Connecticut, Florence Wald heard Dame Cicely lecture at Yale in 1963 and was so inspired by her work that she subsequently visited St. Christopher's to learn about hospice care. Connecticut Hospice was the first hospice to have a building designed specifically for hospice care, and it remains unique in other ways. It is licensed as a hospital and is identified primarily as an inpatient facility (as is St. Christopher's), although Connecticut Hospice is integrated with home care services that are provided throughout Connecticut. By contrast, most US hospices use a home care model and contract with inpatient facilities for services when patients cannot be cared for at home. 1/16

In 1984, the (then) Joint Commission on Accreditation of Hospitals developed its first standards for hospice programs. 1 Anne Rooney, RN, MS, MPH, was instrumental in defining these hospice accreditation standards, and was one of the first Joint Commission hospice surveyors. She is a former director of the Joint Commission's Home Care and Hospice Accreditation Program. In 1992, many of the original hospice standards were incorporated into the (renamed) Joint Commission on Accreditation of Healthcare Organizations (JCAHO) standards and applied to the care of dying patients in hospitals. Since that time, the (now named) Joint Commission has continued to incorporate palliative care standards into all patient care populations and settings. The best example of this is the Joint Commission standard asserting that pain management is a right for all patients. 2 Madolon O Rawe Amenta, PhD, RN, was another influential nurse in hospice development. She founded the Pennsylvania Hospice Network and was a founding member of the Hospice Nurses Association (HNA) in 1986. That same year, she co-authored one of the first nursing textbooks on end-of-life care, Nursing Care of the Terminally Ill, with Nancy Bohnet. Dr. Amenta served as the first HNA Executive Director from 1993 to 1997. 3 The HNA changed its name to the Hospice and Palliative Nurses Association (HPNA) in 1997. 4 In May, 2004, the National Consensus Project for Quality Palliative Care (NCP), a collaboration of five major US palliative care organizations, published its comprehensive guidelines to promote consistent, high-quality palliative care by establishing a consensus on clinical practice guidelines. Five organizations participated in the development of these evidence-based palliative care guidelines: the HPNA, the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, Last Acts/Partnership for Caring, and the National Hospice and Palliative Care Organization. The NCP provides this definition of palliative care: The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such it can be delivered concurrently with lifeprolonging care or as the main focus of care. More than a dozen nursing organizations have endorsed the NCP guidelines, as well as the American Alliance of Cancer Pain Initiatives and the Society of Critical Medicine. The second edition was published in 2007. 5 Defining a Specialty According to the NCP, Specialist Palliative Care providers are professionals whose work is largely or entirely involved with palliative care and who have received appropriate training and credentialing in the field. The American Board of Nursing Specialties (ABNS), the only accrediting body dedicated specifically to nursing certification, accredits specialty nursing certification programs if the organization has demonstrated compliance with rigorous standards for certification. The ABNS considers specialty nursing certification THE standard by which the public recognizes quality nursing care. Of the eighteen ABNS accreditation standards, the first ABNS Standard 1 requires a definition and written scope, describing the nursing specialty, along with evidence of a distinct body of scientific knowledge that is unique and distinct from that of basic nursing. Hospice and Palliative Nursing has been approved by ABNS as a distinct nursing specialty. 6 In 2000, the HPNA published their statement on the scope, standards of care, and standards of practice of the specialty of hospice and palliative nursing. 4 Scope The defined scope of the specialty of hospice and palliative nursing includes the following: Pain and symptom management End-stage disease process care 2/16

Psychosocial and spiritual care of patient and family Culture-sensitive care of patient and family Interdisciplinary collaborative practice Loss and grief care Patient education and advocacy Bereavement care Ethical and legal considerations Communication skills Standards Awareness of community resources The Standards of Hospice and Palliative Nursing Practice are authoritative statements that describe the responsibilities for which practitioners are accountable. They are divided into the Standards of Professional Performance and the Standards of Care. The Standards of Professional Performance, which reflect the consistency of language and structure recommended by the American Nurses Association 1998 Standards of Clinical Practice 7 are as follows: Standard I: Quality of Care. The hospice and palliative nurse systematically evaluates the quality and effectiveness of nursing practice. Standard II: Performance Appraisal. The hospice and palliative nurse evaluates own nursing practice in relation to professional practice standards and relevant standards and regulations. Standard III: Education. The hospice and palliative nurse acquires and maintains current knowledge and competency in hospice and palliative nursing practice. Standard IV: Collegiality. The hospice and palliative nurse contributes to the professional development of peers and other health care professionals as colleagues. Standard V: Ethics. The hospice and palliative nurse's decisions and actions on behalf of patient and family are determined in an ethical manner. Standard VI: Collaboration. This use of interdisciplinary team and other resources includes collaborating with patients and family in developing the care plan and supporting team decisions. 3/16

Standard VII: Research. The hospice and palliative nurse uses research findings in practice, identifies research issues, and supports research studies. Standard VIII: Resource utilization. The hospice and palliative nurse considers factors related to safety, effectiveness and cost in planning and delivering patient and family care. Types of Care Activity Beyond the standards of professional performance, the Standards of Care describe palliative nursing care activities for all patients and their families. The processes encompass all significant actions taken by nurses when providing care, and they form the foundation for clinical decision making. 4 They are described below. Standard I: Assessment The Hospice and Palliative Nurse Collects Patient and Family Health Data Whether assessing a newly admitted hospital patient with severe pain, caring for someone who is actively dying, performing intake at home for hospice services, or responding to a palliative care consultation, a nursing assessment is often the initial act of care in the nursing specialty of palliative care. In every circumstance, the patient's evaluation needs to be holistic and should identify current problems that encompass the physical, emotional, social, and spiritual care realms. It is essential that patient and family care goals be identified and communicated to the health care team. Problems need to be responded to according to the patient's identified priorities (or the family's priorities if the patient is unable to communicate). When palliative care is provided by a specialist in a consultative role, it is critical for the palliative care nurse to communicate with the patient's current care team, respond to the initial consultation, elicit their concerns, and provide a model of excellent team work. Caring for patients with end-stage disease and for those who are actively dying entails the challenge of ensuring that the assessment itself does not pose a burden on patients or significant others. Because a thorough physical assessment may sometimes exacerbate symptoms, determining the cause of a symptom may not be realistically possible. Empirical symptom management, titrated to patient relief, may be the best option, along with intense intervention for immediate physical, emotional, and spiritual needs and immediate needs of the family. For actively dying patients, family support needs related to grieving must be assessed and should particularly identify those at risk for complicated grieving or those with a history of poor coping skills. Standard II: Diagnosis The Hospice and Palliative Nurse Analyzes the Assessment Data in Determining Diagnosis Diagnoses are derived by the analysis of multidimensional assessment data and the identification of problems that may be resolved, diminished, or prevented. Whenever possible, diagnoses are validated with the patient, family, and other interdisciplinary team members and health care providers, and they should be consistently communicated to other team members. Standard III: Outcome Identification The Hospice and Palliative Nurse Develops Expected Outcomes Realistic, derived outcomes are mutually formulated with the patient, family, and (as appropriate) other members of the interdisciplinary team. Expected outcomes should be attainable, given the prognosis of the patient; they can provide direction for continuity of care across all care settings and from the time of admission through bereavement. When possible, expected outcomes are documented as measurable goals. Standard IV: Planning The Hospice and Palliative Nurse Develops a Plan of Care that Prescribes Interventions to Attain Expected Outcomes Care is planned in collaboration with the patient, family, and other interdisciplinary team members within the context of patient and family goals of care. It is individualized to the spiritual, emotional, physical, social, psychological, and cultural needs of the patient and family. The plan of care is dynamic and should be updated regularly as the status, goals, and priorities of the patient and family change. If goals of care are not clarified, the plan of care may go in the wrong direction. 4/16

Standard V: Implementation The Hospice and Palliative Nurse Implements the Interventions Identified in the Plan of Care All interventions need to be weighed by a benefit versus burden calculus that is, ideally, determined by or negotiated with the patient or surrogate decision maker. Although a palliative care approach generally focuses on symptom management, the nature of a particular symptom may lead a clinician to consider aggressive treatment to eradicate the cause, similar to an acute care approach. However, consideration must be given to the impact on the patient's quality of life, the patient's desire for intervention, and the potential for the intervention to cause further suffering. In patients with end-stage disease, the timeliness of the effect of an intervention must also be weighed against the amount of time an individual may have. Another important aspect of nursing intervention is timely referral to other health care disciplines and services and coordination of care to facilitate the interdisciplinary team expertise that is often required to meet the needs of the patient and family. Many routine nursing interventions other than treatment can also be burdensome to patients with end-stage disease, particularly in inpatient settings. These include such routine tasks as daily weights, blood pressures, blood draws for laboratory studies, and even bathing and feeding. Inpatient facility routines, often designed for efficient diagnosis and disease management procedures, can also be burdensome to frail patients or those with end-stage disease. Care needs to be individualized and designed to optimize symptom management, to allow patients to maintain as much control as possible, and to enhance quality of life. Standard VI: Evaluation The Hospice and Palliative Nurse Evaluates the Patient and Family's Progress toward Attainment of Outcomes The effectiveness of the plan is evaluated in relation to achievement of the intended or acceptable outcomes. Palliative care interventions must consider the response of the patient and family to care as one of the most critical measures of effectiveness. The plan of care should be reviewed and revised according to the effectiveness of interventions at the time and according to the patient's current priorities. Patient Education Throughout the nursing process, a critical role of the nurse is to guide the patient and family through all the information that is needed to understand care options. The emotional context of coping with illness, of grieving the many losses, and of anticipating death can make education and learning a challenge. Nurses in palliative care and hospice roles often need to tell people information that they may not want to hear. They also need to provide or reinforce a great deal of information in a short amount of time. The need for frequent repetition of information to patients and families should be expected, and the use of written educational materials to reinforce information can be helpful. Common education needs for patients and families include information related to the following: Disease, expectations for disease progression, and prognosis Treatment options, including realistic, expected outcomes of treatment Advanced care planning information and tools Patients rights, especially as related to decision making and pain management Care options, including hospice services and experimental treatments How to provide physical caregiving (for family caregivers) 5/16

Signs of impending death Community regulations related to dying at home The grieving experience Resources for grief counseling and bereavement services The HPNA provides patient teaching sheets that address many of the foregoing needs. These can be accessed at INTER REF www.hpna.org. Effective Communication Because the emotional aspects of care can often be intense, it is critical that the care team be clear, consistent, and empathetic communicators throughout assessment, care, and evaluation. Nurses need to anticipate the difficult and common themes that accompany serious illness and end-of-life care. These themes include the meaning of illness, the desire to know when death will occur, truth telling among family members, and fears about suffering at the time of death. Other common fears are fear of pain and other physical symptoms, loss of control, and fear of the unknown. Palliative care practitioners need to anticipate these issues, feel comfortable discussing them, and develop competency in using clear and comforting verbal and body language. To attain patient goals and to ensure continuity of care, effective communication must also extend to colleagues. All involved members of the interdisciplinary team need to be able to provide input in care planning, and be cognizant of patients goals of care. Another critical part of the communication process is for every team member to give a consistent message to patients and families, who are often struggling with difficult and emotional care decisions. Receiving mixed messages from members of the health care team can create anxiety and add to distress for all involved. Spiritual Dimensions A spiritual assessment, which includes cultural aspects of beliefs and values, is the first step in addressing spiritual needs. Nurses need to elicit important spiritual beliefs and needs, which can vary greatly among patients and their family members. It is important for nurses to understand some of the common beliefs, values, and rituals of cultural backgrounds of patients and families that may differ from their own. However, rather than making assumptions based on the culture of the patient and family, beliefs must be assessed individually. Some common spiritual needs include exploring the meaning of suffering, the existential issues of patients and families, and resolving unfinished issues or life tasks. Spiritual distress may exacerbate physical suffering, and it can greatly affect quality of life. Helping patients and families work through spiritual issues can also have a positive impact on the family's grieving after the patient's death. Spiritual distress may be a concern for many patients and their family members, but nurses also need to be open to cues and opportunities for spiritual growth. For example, patients can be empowered to guide their family's communication by being open about feelings, take the opportunity to resolve problem relationships, and explore religious beliefs. Although some experienced nurses may be able to address spiritual issues and guide patients and families through spiritual tasks adequately, nurses also need to ensure that patients and families have access to the appropriate providers who can address spiritual needs. Ideally, this is a chaplain, community clergy member, spiritual guide, or other counselor who is also competent in addressing suffering for persons with serious and endstage illness. 6/16

Nurses need to be aware of their own beliefs and values and ensure that they do not impose them on patients and families. It is important to be open to diverse ways of coping, grieving, and dying, rather than holding preconceived notions of how others should feel or behave. Presence and Support In providing care, there are many instances when physical presence is the most effective supportive nursing intervention. It may be a silent presence that allows the patient and family to express emotion, or it may be companionship during times of anxiety, loneliness, despair, dying, and intense grieving. The value of presence is to be in the moment and to model the importance of being rather than doing for families, friends, and other caregivers. Ethical Issues Professional Boundaries Providing hospice and palliative care can be an intense, intimate experience, and boundaries between the patient and nurse can become blurred. Violating professional boundaries may be a greater risk for home care and hospice clinicians who are unaccompanied during visits in the patient's home environment. Highly functioning interdisciplinary teams help to provide the support and perspective necessary to prevent individual clinicians from crossing boundaries. Professional caregivers who have had their own losses or suffer from unresolved grief may also find themselves at risk of over-identifying with patients and families, or unintentionally seeking to have their own needs met. Nurses should be aware of signs of their own or a colleague's over-involvement. These include the following, as set forth by the National Council of State Boards of Nursing 7 : Excessive self-disclosure: The nurse discusses personal problems, feelings, or aspects of his or her intimate life with the patient or family. Super nurse behavior: The nurse believes that only he or she understands and can meet the patient's needs. Other members of the team are not utilized in the usual way. Secretive behavior: The nurse keeps secrets with the patient or becomes defensive when someone questions his or her interactions with patients or family. Selective communication: The nurse reports only some aspects of patient care or patient behavior. Flirtations: The nurse communicates in a flirtatious manner, perhaps employing sexual innuendo or offcolor jokes. Nurses may need help from a supervisor or other team member to set limits with some patients and families and to explore the reasons for their behavior. Crossing boundaries can be harmful to patients and families and, ultimately, can be a source of burnout for the nurse. Withholding/Withdrawing Therapy 7/16

The withholding and withdrawing of life-prolonging or life-sustaining therapy or treatment are governed by the ethical principle of autonomy, which is an individual's right to refuse or accept treatment. However, the emotional component of deciding not to initiate treatment and of withdrawing treatment can feel very different in the clinical setting. Nurses need to be clear that withholding therapy and withdrawing therapy are legal and ethical equivalents. However, the knowledge of this equivalency may not make the decision to withdraw therapy easier for family members or, at times, professional members of the health care team. This issue should, therefore, be a consideration when recommending trials of life-sustaining or life-prolonging treatments that are unlikely to be effective or may need to be withdrawn in the future. When treatment trials are proposed, it is helpful to establish success or failure markers and a time frame for achieving success in advance of the trial so the groundwork is laid for withdrawal. The difficulty in many of these decisions depends on who is making the decision and what therapy is being withheld or withdrawn. The decision is usually easier when a person is able to communicate clearly his or her wishes about refusing treatment. There is particular emotionality associated with withholding or withdrawing artificial food and fluids. 8 The very public 2005 case of Terri Schiavo, a 41-year-old woman who had been in a persistent vegetative state for more than 15 years, provides an extreme example of the volatility of such decisions. Ms. Schiavo's parents fought with her husband (the legal surrogate decision maker) for many years to prevent removal of her feeding tube. This situation presented the combination of a young person who could not speak for herself and the decision to withhold artificial nutrition and hydration. 9 Palliative Sedation Palliative sedation (formerly called terminal sedation) refers to the intentional use of pharmacological agents to induce sleep for relief of distressing symptoms that cannot be controlled by other means. Sedation is used in home and inpatient palliative care settings for relief of refractory symptoms, both physical and existential. The most common reasons for palliative sedation include pain, vomiting, terminal delirium, dyspnea, and psychological distress. This intervention should be reserved as a last resort at end of life. The pharmacological agents used in palliative sedation vary but may include opioid analgesics, benzodiazepines, anticholinergics, and neuroleptic medication classes. Indications for palliative sedation are rare, and it should be used only within the context of specialty palliative care to ensure that optimal, current symptom management has been provided, including nonpharmacological interventions such as assessment of spiritual distress, psychosocial support, and environmental alterations. Although governed by the ethical principle of double effect, palliative sedation practice varies and is rare enough that not every health care team member will feel comfortable with every intervention. 8 Professional team members may have different opinions about whether palliative sedation is indicated, particularly when it is used for psychological distress. Some team members may feel that continual sedation is too similar to euthanasia, eliminates patient control, and does not allow the patient to continue to consent. Nurses should become involved in developing and revising protocols for defining the practice of, and indications for, palliative sedation in their practice settings, and also ensure that palliative care specialists are available to guide the intervention. Policies and protocols need to allow for conscientious objection by individual team members, but still ensure that palliative sedation is an available option, when needed. 10 Individual Competency For nurses to improve palliative care, they need to take responsibility for their individual practice, including selfassessment of knowledge and skills, to identify areas where competency needs to be attained or improved. Although most nurses practice within a nursing specialty, palliative care needs are present in all care settings and most nursing practice. Areas of competency may include updating knowledge of symptom management, improving communication skills, assessing spiritual needs, and learning better methods of teaching patients and families. Another method for self-assessment is evaluating one's own practice outcomes. This can occur through quality improvement studies, medical record reviews, case studies, and clinical supervision. Self-Care 8/16

The emotional nature of working with patients and families who are living with, and dying of, chronic and end-stage illness can be stressful for many practitioners. Nurses need to acknowledge that they and other professional caregivers will also experience feelings of loss and helplessness during the course of providing palliative and endstage care. Individual nurses need to expect these feelings, to acknowledge them, and to find healthy strategies for coping with their feelings. A nurse's stress can affect his or her quality of life, as well as the ability to give optimal patient care. Some strategies that have been shown to be effective include: relaxation, using a variety of techniques such as guided imagery, meditation, and passive relaxation; self-reflection; teaching or mentoring others; exercise; yoga; and journaling. Each nurse needs to monitor his or her own stress level and to find the most effective, individual coping strategies. Every member of the palliative care team should be sensitive to any coping difficulties experienced by colleagues. Some hospice and palliative care programs offer formal support mechanisms for professionals, such as support groups or debriefing sessions for the team. Many organizations also provide individual, confidential counseling services through employee assistance programs that employees can access at any time. Many team members find it helpful to seek out individual colleagues who understand their work and with whom they can debrief and explore feelings when needed. Nurses Integrating Care Nurses have the opportunity to affect the organizations where they practice by integrating palliative care into all care settings. Initiatives can come from a variety of mechanisms. Organizational quality improvement measures, such as improving utilization of advanced directives, are often a good way to integrate palliative care because these indicators already have organizational support and are often recognized as both important and needing improvement. Another helpful mechanism for improving palliative care in organizations is to seek out and join others in the organization with interests in improving specific aspects of palliative care. These may include departments or groups such as pharmacy, pastoral care, ethics committees, and pain consultation teams. In addition, other nurses (including advance practice nurses who function in specific roles in pain management), educational and quality care departments, and specialties such as geriatrics, oncology, care of acquired immunodeficiency syndrome, pediatrics, and critical care often welcome support in improving patient comfort, decision making, and symptom management. For all patient care, the benefits and applicability of integrating palliative care concepts into nursing practice apply to diverse care settings, including ambulatory care, intensive care, pediatrics, and emergency departments and cover areas such as pain and symptom management, advance care planning, bereavement care, and optimizing care at the time of death. In 1997, the American Association of Nursing Colleges identified 15 nursing competencies necessary for the care of patients during the transition at the end of life ( Box 39-1 ). Enhancing the care environment is another way to affect organizational improvement in palliative care. Some examples are furniture designed for family comfort, a designated space for family cell phone use, lighting that can be softened and controlled by patients, and calming colors and art work in patients rooms. Box 39-1 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. 9/16

Use scientifically based standardized tools to assess symptoms (e.g., pain, dyspnea [breathlessness] constipation, anxiety, fatigue, nausea/vomiting, and altered cognition) experienced by patients at the endof-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 physical, psychological, social, and spiritual 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 Approach In some organizations, palliative care has been integrated so nurses in general care units or ambulatory settings routinely assess patients from a holistic perspective and identify palliative care needs, thus establishing an optimal, individualized care plan. In other organizations, palliative care (including the transition from acute care to comfort care at the end of life) often does not occur without a specialty palliative care consultation. The ideal nursing care model incorporates both: palliative care standards integrated into all patient care and the availability of specialty palliative care consultations for complex patients. Complex patients can include those with intractable symptoms, difficult symptoms of dying such as terminal delirium, suffering related to psychosocial or spiritual needs, and ethical concerns, such as requests for euthanasia from the patient or family. A nurse who is competent in providing palliative care will be able to do so in any role and for any patient population. Some general guidelines that illustrate a palliative care approach are listed in the following subsections. The nurse will always assess or establish these elements from the assessment of other team members when beginning care with a patient. Establish What They Know The nurse begins each patient assessment by ascertaining what the patient and family members understand about the patient's disease status and prognosis. Not only does this provide insight into the patient's and family's knowledge base, but also it often provides clues about how each person is coping emotionally. Determine the Legal Proxy 10/16

The nurse needs to determine whether the patient has the capacity to make decisions and who the surrogate decision maker will be should the patient be unable to make decisions. Even a weak or dying patient who has capacity has the right to make decisions for himself or herself. Patients may delegate decision making to another, but they need to be aware of the laws that guide medical decision making if they wish to delegate to someone who is not the legal next of kin, unless previous legal arrangements have been made. The health care team needs to be aware of and to document these arrangements to honor them when the patient can no longer participate in decisions. Patients with capacity who verbally delegate medical decisions or information flow to another person should still be asked by members of the health care team, periodically and in private, whether they wish to continue to delegate in this way. When patients have a language barrier with their caregivers, medical translators who are not friends or family need to be provided when critical information is communicated and when decisions are needed. When patients lack capacity, the nurse needs to determine the legal decision maker and to provide the name and contact information to other members of the health care team so communication and decisions are directed to the correct person. Determine the Patient's Prognosis Information from the patient's primary care provider and other health care consultants, and the patient's current status, will provide information about the likely prognosis. If it is probable that the patient is imminently dying, assessments and individualized interventions must be accelerated to facilitate a peaceful, comfortable death that honors the values of the patient and family. Counselor members of the team such as social workers, chaplains, and the patient's community clergy, if applicable, should be alerted to the patient's imminent dying, to assist in planning care and support at the time of dying. Identify Goals of Care and Patient Priorities In the context of the patient's prognosis, reasonable goals of care need to be determined. Patients and family members should be encouraged to express their current concerns, unaddressed issues, and priorities. The nurse addresses any immediate needs identified by the patient and family and discusses the reason for the referral, if it resulted from a hospice or palliative care consultation. The nurse communicates or clarifies goals of care to other members of the health care team. Assess Pain and Other Symptoms The nurse assesses the level of distress and meaning of symptoms to the patient and formulates a care plan based on the patient's priority for symptom management on an ongoing basis. Pain and symptoms need to be assessed using standardized assessment tools that are tailored to the patient's cognitive abilities, developmental stage, and preference. For example, a patient with mild dementia may not be able to use a 10-point visual analog pain scale but may be able to describe pain as mild, moderate, or severe. It is essential to communicate with the health care team about which assessment tools are best suited to the individual patient to ensure consistency in the use of tools among all team members. A palliative care approach includes anticipation of symptoms related to disease progression and the dying process so these symptoms can be prevented or minimized. For example, a dying patient may lose the ability to swallow. Nurses need to collaborate with the medical team about which medications could be discontinued and for alternate administration routes for medications needed to manage symptoms. Nurses also need to continually assess for burdensome interventions that may cause discomfort or negatively affect the patient's quality of life, such routine vital signs, laboratory studies, and other diagnostic tests when they cease to provide information that will influence the patient's care. Assess Emotional Issues The nurse needs to be competent at discussing difficult topics related to prognosis and questions or fears about dying that patients and family members need to process. The nurse should review previously identified preferences related to advanced care planning and listen for values and beliefs expressed by the patient and family members. The competent nurse will be emotionally prepared and comfortable discussing psychosocial and spiritual concerns, and will be able to anticipate many of the questions patients and families may ask. This often means listening to expressions of sadness and grief in situations where there are no real answers and understanding the value of empathetic presence and support. 11/16

Make Referrals After assessment of the patient's status, the nurse collaborates in a timely manner with the primary health care provider and other professional team members to communicate the need for orders and referrals to address the patient's needs. The team reviews the patient's and family's goals of care and determines what other goals need to be discussed or clarified. The team then determines who will document goals and plans in the medical record, who will communicate what to the patient and family, and, if necessary, who will communicate with any other professional caregivers. Facilitate Grieving The nurse should be prepared to provide spiritual support and grief resources before and at the time of the patient's death, in addition to the support provided by the patient's own clergy, counselor, or the counseling members of the health care team. The nurse ensures that written information about normal grief reactions and sources for grief support and counseling are also provided. Foster Quality of Life A goal of the art of palliative nursing is to assist patients in the identification and accomplishment of remaining life goals. This may mean helping patients move to the place where they wish to die, helping to complete a task, or communicating important information to loved ones. Some patients wish to plan or have input in their funeral arrangements and may look to members of the health care team for help with this task. Enhancing the patient's immediate environment impacts quality of life, especially for the bed-bound person. For inpatient facilities, this may mean moving furniture to accommodate better window views and providing a quiet environment with dimmed lighting, music of the patient's preference, and items from home. Whether at home or in an inpatient setting, the nurse should collaborate with family and caregivers to create or enhance ways to help the patient have some control over his or her own environment and daily routine. Facilitate a Good Death At the time of dying, the nurse facilitates privacy for the patient and family and any other changes to the patient's immediate environment that may enhance the comfort of the patient or family. At the time of dying, it is critical for inpatient routines to be altered and tailored to the needs of the patient and family. Space to rest and sleep in the patient's room, areas outside the room for consultation, family respite, and telephone calls are helpful to visiting family members. Nurses need to provide a balance between support and privacy and should check frequently to ensure that the patient and family feel cared for and supported, not abandoned. An increase in the frequency of professional visits may be necessary for patients who are dying at home. Family members should be assured of a timely, knowledgeable, and sensitive response from the health care team, including the on-call team members. Nurses and other members of the health care team should encourage family expressions of grief, even when their loved one can no longer communicate. Family members will need information about the dying process, what to expect at the time of death, and information on local laws regarding funerals and burial. Nurses need to assess for cultural and religious practices and rituals that may be important to families and should act as facilitators. Nurses should be a role model of compassionate, respectful patient care. One way to assist the family's grieving is to ensure that the patient's death went well from their perspective. Professional Associations Membership in local, regional, and national nursing and other professional organizations provides opportunities for nurse networking, peer support, and education. Nurses who become involved in professional organizations at the committee or board level can directly affect specialty nursing practice through policy development, professional presentations, and committee work. Professional organizations depend largely on the volunteer expertise of professional nurses. The rewards to the individual nurse are enormous in enhancing their individual, professional development. 12/16

The HPNA has grown to represent more palliative nurses than any other organization in the world. The HPNA provides special interest groups in the areas of pediatrics, advanced practice geriatrics, administration, and research. Technical assistance is available to regional HPNA groups to give hospice and palliative care nurses local networking opportunities, as are resources and expertise from the national organization. HPNA has provided a variety of educational opportunities for nurses through their journal (the Journal of Hospice and Palliative Nursing), an annual clinical conference, teleconferences, and many educational publications. In addition, the HPNA hosts train-the-trainer conferences throughout the year, the End-of-life Nursing Education Consortium, and the HPNA Clinical Review to provide curricula and teaching strategies that allow professional nurses to teach their colleagues. Specialty Certification for the Nursing Team In 1994, the first specialty certification examination in hospice nursing was offered by the (then) National Board for Certification of Hospice Nurses. In 1996, a role delineation study conducted by this organization demonstrated a common core of practice for hospice and palliative nurses. This provided the validation for broadening the specialty beyond those who practice in hospice programs to include palliative care nurse specialists in non-hospice settings. Subsequently, The National Board for Certification of Hospice Nurses and the HNA changed the names of their organizations by adding palliative, to reflect the expanded scope of the specialty. The NBCHPN has expanded specialty certification for other members of the hospice and palliative nursing team. Specialty certification for nursing assistants began in 2002 and in September 2004 for Licensed Practical and Vocational Nurses. The NBCHPN collaborated with the American Nurses Credentialing Center in 2003 to create the first Advanced Practice Palliative Care Certification. In 2005, the NBCHPN became sole proprietor of the certification for APNs. Successful candidates who attain specialty certification earn the credentials identifying their specialty. Credentials for Hospice and Palliative Certified Members of the Nursing Team are: Advanced Practice Nurse (APN): ACHPN Registered Nurse (RN): CRNH Licensed Practical Nurse of Licensed Vocational Nurse (LPN/VN): CHPLN Nursing Assistant (CNA, HHA): CHPNA Future Trends Palliative Care Specialists The need for palliative care specialists is anticipated to continue to increase as the population ages and more people are living with chronic, serious illnesses. The success of treatments that allow people to live longer also creates an increased need for symptom management for diseases that can be managed but not cured. Because palliative care services are not currently regulated, there is an inconsistency in the ability to meet the needs of patients and families comprehensively and holistically. Palliative care programs need to standardize care by adhering to the recommended standards developed by the NCP, regardless of the palliative service practice model. 5 Advanced Practice Palliative Nurses APNs are increasing in number and are poised to assume a variety of necessary roles in palliative care. In 2003, the first certification examination for APNs was offered through a collaborative effort between the American Nurses Credentialing Center and the NBCHPN. APNs are prepared at the master's degree level or beyond and are either nurse practitioners or nurse clinicians. APNs are prepared for leadership roles in clinical care, education, consultation, and research. 11 Palliative Education 13/16

Palliative care practice will improve on a large scale only when undergraduate nursing programs incorporate palliative care education into their curricula and more graduate level programs in palliative care become available. The End-of-life Nursing Education Consortium project originally designed its curriculum to allow undergraduate programs to adapt and learn from it. Madonna University in Michigan offers interdisciplinary hospice education programs. The Breen School of Nursing at Ursuline College in Ohio was the first program to prepare advanced practice nurses in palliative care. 12 More graduate and postgraduate programs will be needed to fill future needs. Nursing Research In addition to the common barriers in nursing research (e.g., lack of research funds and a limited number of nursing researchers), research in end-of-life nursing care faces a set of unique issues. Some of these research challenges include study accrual issues related to rapidly declining subjects and late referrals to hospice and palliative care programs. In addition, there are the ethical considerations (e.g., the ability of subjects to provide consent) and the challenge of conducting research on emotionally and physically vulnerable patient and family populations. Research tools need to be designed that balance scientific rigor and potential burden to the subject, and must be sensitive to the fact that, for these subjects, time, especially quality time, is a limited commodity. 12 Conversely, many seriously ill patients and their families respond positively to requests for participation in research studies. Some patients see this as a way to contribute to science and the well-being of others, providing some sense of purpose and allowing them to feel that they are giving as well as being cared for. The National Institute of Nursing Research (NINR) developed an end-of-life research agenda after the publication of the Institute of Medicine report on the scientific knowledge gaps about end-of-life care. In August 2000, the NINR was joined by the National Cancer Institute, the National Center for Complementary and Alternative Medicine, the National Institute of Allergy and Infectious Diseases, the National Institute of Dental and Craniofacial Research, and the National Institute on Aging to collaborate on the theme of Quality of Life for Individuals at the End of Life. The NINR has since funded more than 22 research projects and 7 training and career development awards related to end-of-life care. 13 Pearls Pitfalls Careful listening is a key skill for every palliative care practitioner. At the end of life, patients may have capacity for decision making at some times, but not others. Patients should always be assessed for capacity and should be allowed to make decisions when they are able. Conflicting goals among the patient, family members, and health care team require respectful negotiation and clear communication. Nurses should appreciate the value of therapeutic presence, even when traditional nursing interventions are no longer effective or needed. The nurse should anticipate what family members need to know, because most will not know what to ask or be able to articulate all their needs. The dying experience can be improved in any care setting. 14/16