MED SURG: CHAPTER 16: END OF LIFE CARE:

Nursing Interventions For Grief & Mourning: Assessing For Presence Social Support:

- "Do you have someone to whom you can talk about your husband?" - "May I help you find someone you can talk to?"

Nursing Interventions For Grief & Mourning: Assessing Coping Skills:

- "How are you managing day to day?" - "Have you experienced other losses? How did you manage those?" - "Are there things that you are having trouble doing?" - "Do you have/need help with specific tasks?"

Grief Process: 4. Depression:

- "I just don't know how my kids are going to get along after I'm gone." Sadness, grief, mourning for impending losses. Nursing Implications: - Normal and adaptive response. - Clinical depression should be assessed and treated when present. - Nurses should encourage the patient and the family to fully express their sadness. - Insincere reassurance or encouragement of unrealistic hopes should be avoided.

Grief Process: 3. Bargaining:

- "I just want to see my grandchild's birth, then I'll be ready...." Patient and/or family plead for more time to reach an important goal. Promises are sometimes made with God. Nursing Implications: - Terminally ill patients are sometimes able to outlive prognoses and achieve some future goal. - Nurses should be patient, allow expression of feelings, and support realistic and positive hope.

Grief Process: 5. Acceptance:

- "I've lived a good life, and I have no regrets." Patient and/or family are neither angry nor depressed. Nursing Implications: - The patient may withdraw as their circle of interest diminishes. - The family may feel rejected by the patient. - Nurses need to support the family's expression of emotions and encourage them to continue to be present for the patient.

Grief Process: 1. Denial:

- "This cannot be true." Feelings of isolation. May search for another health care professional who will give a more favorable opinion. May seek unproven therapies. Nursing Implications: - Denial can be an adaptive response, providing a buffer after bad news. - It allows time to mobilize defenses but can be maladaptive when it prevents the patient or the family from seeking help or when denial behaviors cause more pain or distress than the illness or interfere with everyday functions. - Nurses should assess the patient's and family's coping style, information needs, and understanding of the illness and treatment to establish a basis for empathetic listening, education, and emotional support. - Rather than confronting the patient with information that he or she is not ready to hear, the nurse can encourage him or her to share fears and concerns. - Open-ended questions or statements such as "Tell me more about how you are coping with this new information about your illness" can provide a springboard for expression of concerns.

Grief Process: 2. Anger:

- "Why me?" Feelings of rage, resentment, or envy directed at God, health care professionals, family, others. Nursing Implications: - Anger can be very isolating, and loved ones or clinicians may withdraw. - Nurses should allow the patient and family to express anger, treating them with understanding, respect, and knowledge that the root of the anger is grief over impending loss.

4 Levels Of Hospice Care: Inpatient Respite Care:

- A 5-day inpatient stay, provided on an occasional basis to relieve the family caregivers.

4 Levels Of Hospice Care: Routine Home Care:

- All services provided are included in the daily rate to the hospice.

Artificial Hydration & Nutrition:

- Along with breathing, eating and drinking are essential to survival throughout life. - Near the end of life, the body's nutritional needs change, and the desire for food and fluid may diminish. People may no longer be able to use, eliminate, or store nutrients and fluids adequately. - Eating and sharing meals are important social activities in families and communities, and food preparation and enjoyment are linked to happy memories, strong emotions, and hope for survival. - For patients with serious illness, food preparation and mealtimes often become battlegrounds in which well-meaning family members argue, plead, and cajole to encourage ill people to eat. - Seriously ill patients often lose their appetites entirely, develop strong aversions to foods that they have enjoyed in the past, or crave a particular food to the exclusion of all other foods. - Although nutritional supplementation may be an important part of the treatment plan in early or chronic illness, unintended weight loss and dehydration are expected characteristics of progressive illness. - As illness progresses, patients, families, and clinicians may believe that without artificial nutrition and hydration, terminally ill patients will "starve," causing profound suffering and hastened death. - However, starvation should not be viewed as the failure to insert tubes for nutritional supplementation or hydration of terminally ill patients with irreversible progression of disease. - Research has demonstrated that terminally ill patients with cancer who were hydrated did not have improved biochemical parameters and exhibited lower serum albumin levels, leading to fluid retention. - The use of artificial nutrition and hydration (tube and intravenous [IV] fluids and feeding) carries considerable risks and generally does not contribute to comfort at the end of life - Similarly, survival is not increased when terminally ill patients with advanced dementia receive enteral feeding, and no data support an association between tube feeding and improved quality of life in these patients - Furthermore, in patients who are close to death, symptoms associated with dehydration such as dry mouth, confusion, and diminished alertness are common and typically do not respond to artificial nutrition - Dry mouth can generally be managed through nursing measures such as mouth care and environmental changes with medications to diminish confusion. - As the patient approaches the end of life, the family and the health care providers should offer the patient what he or she prefers and can most easily tolerate. - The nurse should instruct the family how to separate feeding from caring and how to demonstrate love, sharing, and caring by being with the loved one in other ways. - Preoccupation with appetite, feeding, and weight loss diverts energy and time that the patient and the family could use in other meaningful activities. The following are the tips to promote nutrition for terminally ill patients: - Offer small portions of favorite foods. - Be aware that cool foods may be better tolerated than hot foods. - Offer cheese, eggs, peanut butter, mild fish, chicken, or turkey. Meat (especially beef) may taste bitter and unpleasant. - Add milk shakes, meal replacement drinks, or other liquid supplements. - Place nutritious foods at the bedside (fruit juices, milk shakes in insulated drink containers with straws). - Schedule meals when family members can be present to provide company and stimulation. - Offer ice chips made from frozen fruit juices. - Allow the patient to refuse foods and fluids.

Assisted Suicide Legislation:

- Although assisted suicide is expressly prohibited under statutory or common law in the majority of states, calls for legalized assisted suicide have highlighted inadequacies in the care of the dying. - Public support for physician-assisted suicide has resulted in numerous state ballot initiatives. - In 1994, Oregon voters approved the Oregon Death With Dignity Act, the first and—until 2008—only such legislative initiative to pass. - This law provides for access to physician-assisted suicide by terminally ill patients under very controlled circumstances. - After numerous challenges, the law was enacted in 1997. Of 1327 Oregonians who have received written prescriptions under the terms of the law since it was passed in 1997, 859 have self-administered physician-prescribed lethal medication and have died - In November 2008, voters approved the Washington Death With Dignity Act. Modeled after the Oregon Death With Dignity law, the act contains the same safeguards and is given through the Washington State Department of Health - In 2009, Montana's Supreme Court ruled that physician aid in dying is not a crime, making this the third state to legalize assisted suicide. - In 2013, Vermont became the next state to enact assisted suicide legislation - In 2014, 29-year-old California resident Brittany Maynard learned that she had terminal brain cancer and moved to Oregon, so that she could establish residence and end her life under Oregon's law. - In 2015, California's governor signed the End of Life Options Act, modeled after Oregon's law. - Numerous other states have considered and rejected assisted suicide ballot initiatives. - A Gallup Poll reflected an increase in support for assisted suicide (68%), an increase of nearly 20 points in the prior 2 years. - It is likely that the issue will continue to be pursued in the courts and through ballot measures in other states. - Proponents of physician-assisted suicide argue that terminally ill people should have a legally sanctioned right to make independent decisions about the value of their lives and the timing and circumstances of their deaths, and its opponents argue for greater access to symptom management and psychosocial support for people approaching the end of life. - In its 2010 position statement on Registered Nurses' Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life, the ANA acknowledges the complexity of the assisted suicide debate but clearly states that nursing participation in assisted suicide is a violation of the Code for Nurses. - The ANA position statement further stresses the important role of the nurse in supporting effective symptom management, contributing to the creation of environments for care that honor the patient's and family's wishes, as well as identifying their concerns and fears (ANA, 2010). - In its position statement on Euthanasia, Assisted Suicide and Aid in Dying, the ANA clearly prohibits nurses' participation in assisted suicide and euthanasia because these acts are in direct violation of (the Code of Ethics), the ethical traditions and goals of the profession, and its covenant with society. - Nurses have an obligation to provide humane, comprehensive, and compassionate care that respects the rights of patients but upholds the standards of the profession in the presence of chronic, debilitating illness and at end-of-life - Similarly, the HPNA opposes the legalization of assisted suicide and affirms the value of comprehensive end-of-life care - The Oncology Nursing Society has endorsed the HPNA position, and this organization also calls for quality palliative care - The American Academy of Hospice and Palliative Medicine has taken a position of "studied neutrality" on assisted death, recommending that clinicians carefully assess the fear and suffering that have led patients to request assisted suicide and to address these without hastening death

Nutrition & Hydration At End Of Life: Anorexia:

- Although causes of anorexia may be controlled for a period of time, progressive anorexia is an expected and natural part of the dying process. - Anorexia may be related to or exacerbated by situational variables (e.g., the ability to have meals with the family vs. eating alone in the "sick room"), progression of the disease, treatment of the disease, or psychological distress. - The patient and the family should be instructed in strategies to manage the variables associated with anorexia

The Death Vigil:

- Although each death is unique, it is often possible for experienced clinicians to assess that the patient is "actively" or imminently dying and to prepare the family in the final days or hours leading to death. - As death nears, the patient may withdraw, sleep for longer intervals, or become somnolent. Death is generally preceded by a period of gradual diminishment of bodily functions, increased intervals between respirations, a weakened and irregular pulse, diminished blood pressure, and skin color changes or mottling. - Family members should be encouraged to be with the patient, to speak and reassure the patient of their presence, to stroke or touch the patient, or to lie alongside the patient (even in the hospital or long-term care facility) if the family members are comfortable with this degree of closeness and can do so without causing discomfort to the patient. - The family may go to great lengths to ensure that their loved one will not die alone. - However, despite the best intentions and efforts of the family and clinicians, the patient may die at a time when no one is present. - In any setting, it is unrealistic for family members to be at the patient's bedside 24 hours a day. - Experienced hospice clinicians have observed and reported that some patients appear to "wait" until family members are away from the bedside to die, perhaps to spare their loved ones the pain of being present at the time of death. - Nurses can reassure family members throughout the death vigil by being present intermittently or continuously, modeling behaviors (such as touching and speaking to the patient), providing encouragement in relation to family caregiving, providing reassurance about normal physiologic changes, and encouraging family rest breaks. - If a patient dies while family members are away from the bedside, they may express feelings of guilt and profound grief and may need emotional support.

Nutrition & Hydration At End Of Life:

- Anorexia and cachexia are common in the seriously ill. - The profound changes in the patient's appearance and a lack of interest in the socially important rituals of mealtime are particularly disturbing to families. - The approach to the problem varies depending on the patient's stage of illness, level of disability associated with the illness, and desires. - The anorexia-cachexia syndrome is characterized by disturbances in carbohydrate, protein, and fat metabolism; endocrine dysfunction; and anemia. The syndrome results in severe asthenia (loss of energy). - Anorexia and cachexia differ from starvation (simple food deprivation) in several important ways. - Appetite is lost early in the process, the body becomes catabolic in a dysfunctional way, and supplementation by gastric feeding (tube feeding) or parenteral nutrition in advanced disease does not replenish lean body mass that has been lost.

Managing Physiologic Responses: Anticipating & Planning:

- Anticipating and planning interventions for symptoms is a cornerstone of both palliative and end-of-life care. - Patients and family members cope more effectively with new symptoms and exacerbations of existing symptoms when they know what to expect and how to manage them. - At the end of life, hospice programs typically provide "emergency kits" containing ready-to-administer doses of various medications that are useful to treat symptoms in advanced illness. - For example, a kit might contain small doses of oral morphine liquid for pain or shortness of breath, a benzodiazepine for restlessness, and an acetaminophen suppository for fever. - Family members can be instructed to administer a prescribed dose from the emergency kit, often avoiding prolonged suffering for the patient as well as rehospitalization for symptom management.

Nursing Interventions For Grief & Mourning: Assessing For Signs Of Complicated Grief & Mourning & Offer Professional Referral:

- Are you preoccupied with thoughts of the deceased that interfere with your ability to care for yourself? - Do you have frequent and prolonged intense emotional pain?

Outpatient Palliative Care:

- As palliative care has become more prevalent in hospitals, skilled nursing settings, and in home hospice programs, outpatient palliative care has emerged as an approach to providing services and support to patients and families who opt not to or are not eligible for home hospice but could benefit from comprehensive palliative care in the community. - Outpatient palliative care benefits both patients and their families and other providers by providing expert consultation and management of symptoms and other needs. - Studies demonstrate that outpatient palliative care increases patient satisfaction with care, improves symptom management and quality of life, reduces utilization of other health care services (such as avoidable acute care admissions), and may lengthen survival for some patients

Spiritual Care:

- Attention to the spiritual component of the illness experienced by the patient and the family is not new within the context of nursing care, yet many nurses lack the comfort or skills to assess and intervene in this dimension. - Spirituality contains features of religiosity; however, the two concepts are not interchangeable. - Spirituality includes domains such as how a person derives meaning and purpose from life, one's beliefs and faith, sources of hope, and attitudes toward death - For most people, contemplating one's own death raises many issues, such as the meaning of existence, the purpose of suffering, and the existence of an afterlife. - A survey on end-of-life issues conducted by the Pew Research Center revealed that personal attitudes and preferences concerning end-of-life treatment are related to religious affiliation, race, and ethnicity. - The spiritual assessment is a key component of comprehensive nursing assessment for terminally ill patients and their families. - Although the nursing assessment should include religious affiliation, spiritual assessment is conceptually much broader than religion and, therefore, is relevant regardless of a patient's expression of religious preference or affiliation. In addition to the assessment of the role of religious faith and practices, important religious rituals, and connection to a religious community; the nurse should further explore: - The harmony or discord between the patient's and the family's beliefs - Other sources of meaning, hope, and comfort - The presence or absence of a sense of peace of mind and purpose in life - Spiritual or religious beliefs about illness, medical treatment, and care of the sick

Nutrition & Hydration At End Of Life: Cachexia:

- Cachexia refers to severe lean muscle loss with or without fat loss that cannot be reversed by traditional nutritional interventions - Although anorexia may exacerbate cachexia, it is not the primary cause. - Cachexia is associated with anabolic and catabolic changes in metabolism that relate to activity of neurohormones and proinflammatory cytokines, resulting in profound protein loss. - These processes appear to be similar at the end stages of both cancer and some noncancerous illnesses, such as AIDS - However, the pathophysiology of cachexia in terminal illness is not well understood. In terminal illness, the severity of tissue wasting is greater than would be expected from reduced food intake alone, and typically increasing appetite or food intake does not reverse cachexia. - At one time, it was believed that patients with cancer with rapidly growing tumors developed cachexia because the tumor created an excessive nutritional demand and diverted nutrients from the rest of the body. - Research links cytokines produced by the body in response to a tumor to a complex inflammatory-immune response present in patients whose tumors have metastasized, leading to anorexia, weight loss, and altered metabolism. - An increase in cytokines occurs not only in cancer but also in AIDS and many other chronic diseases

Hope:

- Clinicians and researchers have observed that although specific hopes may change over time, hope generally persists in some form across every stage of illness. - In terminal illness, hope represents the patient's imagined future, forming the basis of a positive, accepting attitude and providing the patient's life with meaning, direction, and optimism. - When hope is viewed in this way, it is not limited to cure of the disease; instead, it focuses on what is achievable in the time remaining. - Many patients find hope in working on important relationships and creating legacies. - Terminally ill patients can be extremely resilient, reconceptualizing hope repeatedly as they approach the end of life. - Numerous nurse researchers have studied the concept of hope, and they have related its presence to spirituality, quality of life, and transcendence - Hope is a multidimensional construct that provides comfort as a person endures life threats and personal challenges. The following are hope-fostering and hope-hindering activities among terminally ill hospice patients with various diagnoses: - Hope-fostering categories: Love of family and friends, spirituality/faith, setting goals and maintaining independence, positive relationships with clinicians, humor, personal characteristics, and uplifting memories - Hope-hindering categories: Abandonment and isolation, uncontrollable pain/discomfort, and devaluation of personhood - Nurses can support hope for the patient and the family by using effective listening and communication skills, thus encouraging realistic hope that is specific to their needs for information, expectations for the future, and values and preferences concerning the end of life. - Nurses must engage in self-reflection and identify their own biases and fears concerning illness, life, and death. - As nurses become more skilled in working with seriously ill patients, they can become less determined to "fix" and more willing to listen; more comfortable with silence, grief, anger, and sadness; and more fully present with patients and their families.

National Consensus Project for Quality Palliative Care: Social Aspects Of Care:

- Comprehensive interdisciplinary assessment identifies the social needs of patients and their families, and a plan of care is developed to respond to these needs as effectively as possible.

4 Levels Of Hospice Care: Continuous Care:

- Continuous nursing care provided in the home for the management of a medical crisis. - Care reverts to the routine home care level after the crisis is resolved. - (For example, seizure activity develops and a nurse is placed in the home continuously to monitor the patient and administer medications. After 72 hours, the seizure activity is under control, the family has been instructed how to care for the patient, and the continuous nursing care is discontinued.)

Principles Of Hospice Care:

- Death must be accepted. - The patient's total care is best managed by an interdisciplinary team whose members communicate regularly with one another. - Pain and other symptoms of terminal illness must be managed. - The patient and the family should be viewed as a single unit of care. - Home care of the dying is necessary. - Bereavement care must be provided to family members. - Research and education should be ongoing.

Most Common Hospice Diagnosis:

- Dementia - Heart disease - Lung disease •Most patients who enrolled in hospice in previous decades had cancer diagnoses, just 36.6% of hospice enrollees in 2014 had cancer diagnoses

Anticipatory Grief:

- Denial, sadness, anger, fear, and anxiety are normal grief reactions in people with life-threatening illness and those close to them. - Kübler-Ross described five common emotional reactions to dying that are applicable to the experience of any loss - Not every patient or family member experiences every stage; many patients never reach a stage of acceptance, and patients and families sometimes fluctuate on a daily basis in their emotional responses. - Furthermore, although impending loss stresses the patient, the people who are close to him or her, and the functioning of the family unit, awareness of dying also provides a unique opportunity for family members to reminisce, resolve relationships, plan for the future, and say goodbye. - Individual and family coping with the anticipation of death is complicated by the varied and conflicting trajectories that grief and mourning may assume in families. - For example, the patient may be experiencing sadness while contemplating role changes that have been brought about by the illness, and the patient's spouse or partner may be expressing or suppressing feelings of anger about the current changes in role and impending loss of the relationship. - Others in the family may be engaged in denial (e.g., "Dad will get better. He just needs to eat more"), fear ("Who will take care of us?" or "Will I get sick, too?"), or profound sadness and withdrawal. - Although each of these behaviors is normal, tension may arise when one or more family members perceive that others are less caring, too emotional, or too detached. - The nurse should assess the characteristics of the family system and intervene in a manner that supports and enhances the cohesion of the family unit. - The nurse can suggest that family members talk about their feelings and understand them in the broader context of anticipatory grief and mourning. - Acknowledging and expressing feelings, continuing to interact with the patient in meaningful ways, and planning for the time of death and bereavement are adaptive family behaviors. - Professional support provided by grief counselors, whether in the community, at a local hospital, in the long-term care facility, or associated with a hospice program, can help both the patient and the family sort out and acknowledge feelings and make the end of life as meaningful as possible.

Managing Physiologic Responses: Dyspnea:

- Dyspnea, an uncomfortable awareness of breathing, is one of the most prevalent symptoms at the end of life and can be challenging to manage - A highly subjective symptom, dyspnea often is not associated with visible signs of distress, such as tachypnea, diaphoresis, or cyanosis. - Although the underlying cause of the dyspnea can be identified and treated in some cases, the burdens of additional diagnostic evaluation and treatment aimed at the physiologic problem may outweigh the benefits. - The treatment of dyspnea varies depending on the underlying cause, the patient's general physical condition, and imminence of death. - For example, a blood transfusion may provide temporary symptom relief for a patient with anemia earlier in the disease process; however, as the patient approaches the end of life, the benefits are typically short-lived or absent.

Nursing Interventions For Grief & Mourning: Supporting Expression Of Feelings:

- Encourage the telling of the story using open-ended statements or questions (e.g., "Tell me about your husband"). - Assist the mourner to find an outlet for their feelings: talking, attending a support group, keeping a journal, finding a safe outlet for angry feelings (writing letters that will not be mailed, physical activity). - Assess emotional affect and reinforce the normalcy of feelings. - Assess for guilt and regrets:"Are you especially troubled by a certain memory or thought?""How do you manage those memories?"

End Of Life Care:

- Essential part of nursing practice, patient care

Palliative Care In Skilled Nursing Practices:

- Experts estimate that the number of people who will need some form of short- or long-term skilled nursing care in their lifetimes, whether in the community or in a residential care facility, will double by the year 2050 - As a result, the likely place of death for a growing number of Americans after the age of 65 years will be a skilled nursing facility. - For those Americans younger than 65 years, the most common place for death remains the hospital (38%), although the proportion that die at home has increased steadily over the years. - Similarly, for those older than 65 years, death at home has become more common (24%); however, the hospital (35%) and nursing home (28%) as the location of death still exceed the number of deaths at home, and although hospital death is decreasing, nursing home death is increasing - Residents of skilled nursing facilities typically have poor access to palliative care. - Regulations that govern how care in these facilities is organized and reimbursed tend to emphasize restorative measures and serve as a disincentive to palliative care. - Since 1989, home hospice programs have been permitted to enroll long-term care facility residents in hospice programs and to provide interdisciplinary services to residents who qualify for hospice care. - Of the more than 1.7 million Medicare beneficiaries who received hospice services in 2014, 14.5% resided in long-term care facilities, a decrease from 17.9% in 2013 - Because hospices provide some services that may overlap with services provided by the skilled nursing provider, payment models have been developed to define and reconcile duplication of services. - In 1997, the Office of Inspector General (OIG), an oversight arm of the federal government, questioned whether hospice services in nursing homes were an unnecessary duplication of services already provided by long-term care facility staff. - In 2011, the OIG reported on the inappropriateness of payments for hospice patients in nursing homes who did not meet eligibility, plan of care, and certification of terminal illness requirements. - Hospice/skilled nursing facility contracts continue to be scrutinized by federal regulators. - Meanwhile, facilities are under increasing public pressure to improve care of the dying and are beginning to develop palliative care units or services; continuing to contract with home hospice programs to provide palliative care consultations and hospice care in the facilities; and to educate staff, residents, and their families about pain and symptom management and end-of-life care. - Many skilled nursing providers have implemented "culture change" innovations such as resident-centered care plans and consistent staff assignments to change the experience of long-term skilled nursing care. - Researchers have observed that well-developed culture change practices could provide a strong implementation platform for palliative care - Further research is needed to test models for providing palliative and end-of-life care in skilled nursing facilities

Death:

- For patients who have received adequate management of symptoms and for families who have received adequate preparation and support, the actual time of death is commonly peaceful and occurs without struggle. - Nurses may or may not be present at the time of a patient's death. In many states, nurses are authorized to make the pronouncement of death and sign the death certificate when death is expected. - Death is defined as the permanent cessation of respiratory and circulatory functions - The determination of death is made through a physical examination that includes auscultation for the absence of breathing and heart sounds. - Home care or hospice programs in which nurses make the time-of-death visit and pronounce death have policies and procedures to guide the nurse's actions during this visit. Immediately on cessation of vital functions, the body begins to change. - It becomes dusky or bluish, waxen appearing, and cool; blood darkens and pools in dependent areas of the body (e.g., the back and the sacrum if the body is in a supine position); and urine and stool may be evacuated.

Hospice Care:

- Hospice is a coordinated program of interdisciplinary services provided by professional caregivers and trained volunteers to patients with serious, progressive illnesses that are not responsive to cure. - The root of the word hospice is hospes, meaning "host." According to Cicely Saunders, who founded the world-renowned St. Christopher's Hospice in London

Palliative Care In Hospital Setting:

- Hospitals have a financial incentive to transfer patients with terminal illnesses who are no longer in need of acute care to receive care in other settings, such as long-term care facilities and home. - Despite the economic and human costs associated with death in the hospital setting, approximately 30% of all deaths occur in acute care settings. - While hospital deaths declined in the 10 years between 2000 and 2010, 25% of deaths are accounted for by persons older than 85 years - The landmark Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) documented troubling deficiencies in the care of the dying in hospital settings - The Patient Protection and Affordable Care Act (PPACA) required the development of a Measures Application Partnership (MAP), which was convened by the National Quality Forum and reports directly to the Department of Health & Human Services (HHS). - Importantly, the MAP workgroup responsible for hospice and palliative care measures has recommended "cross cutting" quality measures that would "follow the patient and their full set of experiences" - This move will help ensure that standards of care for patients with advanced illness and at end of life will apply regardless of where the patients are receiving care, ensuring quality of care for persons receiving care or dying in settings other than their preferred location. - Many patients will continue to opt for hospital care or will by default find themselves in hospital settings at the end of life. Increasingly, hospitals are conducting system-wide assessments of end-of-life care practices and outcomes and are developing innovative models for delivering high-quality, person-centered care to patients approaching the end of life. - A growing body of evidence supports the role of palliative care that is delivered concurrently with standard medical treatment. - For example, in a landmark study of referral to palliative care for patients newly diagnosed with metastatic non-small cell lung cancer (a disease with very poor prognosis), researchers found that those patients randomized to the palliative care plus standard oncology care arm of the trial not only showed improved quality of life and mood but also had longer median survival than those who received standard oncology care alone - This study underscores the value of palliative care and undercuts one of the principal objections to palliative care, which equates it with "giving up." - In 2011, The Joint Commission launched an advanced certification program for palliative care to recognize hospitals that provide exceptional patient and family-centered care. - Despite early financial barriers to providing high-quality palliative care in acute care settings palliative care services in hospitals have grown significantly; in 2015, almost all large hospitals (90%) had a palliative care program - Public policy changes have been called for that would reimburse hospitals for care delivered via designated hospital-wide palliative care beds, clustered palliative care units, or palliative care consultation services in acute care settings. - Resources are available for developing hospital-hospice partnerships to provide high-quality palliative care for hospitalized patients and for addressing the palliative care needs of other specialized populations, such as patients receiving such care in intensive care units (ICUs), pediatric patients, residents of long-term care facilities, and patients receiving care in community settings (CAPC, 2015b). - In 2013, the state of Maryland passed legislation that requires hospitals with more than 50 beds to have an accredited palliative care program by 2016. - In a statewide survey of hospitals, researchers found that although 89% of Maryland providers already had a palliative care program in place, 41% indicated that they did not have procedures in place for ensuring timely delivery of services - This action by the Maryland legislature is an example of state policy that can contribute to wider adoption of palliative care.

After Death Care: Family:

- Immediately after death, family members should be allowed and encouraged to spend time with the deceased. - Normal responses of family members at the time of death vary widely and range from quiet expressions of grief to overt expressions that include wailing and prostration. - The family members' desire for privacy during their time with the deceased should be honored. - Family members may wish to independently manage or assist with care of the body after death. - In the home, after-death care of the body frequently includes culturally specific rituals such as bathing the body. - Home care agencies and hospices vary in the policies surrounding removal of tubes. - In the absence of specific guidance from the organization, the nurse should shut off infusions of any kind (IV or tube feeding) and leave IV access devices, feeding tubes, catheters, and wound dressings in place. - When an expected death occurs in the home setting, the family generally will have received assistance with funeral arrangements in advance of the death. - The funeral home has often been prearranged, and the funeral director will transport the body directly to the funeral home. - In the hospital or long-term care facility, nurses follow the facility's procedure for preparation of the body and transportation to the facility's morgue. - However, the needs of families to remain with the deceased, to wait until other family members arrive before the body is moved, and to perform after-death rituals should be honored. - Some patients may have elected to donate tissue such as corneas, bone, veins, or heart valves for transplant. - Typically, this information would be known to the care team before the patient dies. In some cases, such as late referral or an unexpectedly rapid progression, the patient's wishes with respect to donation might be unknown. - If the patient died at home or in a nursing home and the deceased's wishes are known, a team member should contact the organ procurement organization through which the deceased had arranged to donate tissue. - That organization will ordinarily transport the body for tissue procurement and to the funeral home.

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. :

- In 2014, the Institute of Medicine (IOM) released a consensus report titled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. - The report presents a summary of findings from a review of the evidence and recommendations for improving palliative and end-of-life care. - The authors noted that patients experienced many transitions in settings, frequent and potentially avoidable hospital readmission, and inconsistent referral to palliative care. - Recommendations include widespread and timely access to, and comprehensive coverage for palliative care services, improved communication between providers, greater emphasis on advance care planning, professional education and development, and stronger public education and engagemen

Managing Physiologic Responses: Pain:

- In the final stages of illnesses such as cancer, heart disease, COPD, and renal disease, pain and other symptoms are common. - Pain results from the diseases as well as the modalities used to treat them. - The Worldwide Palliative Care Alliance and World Health Organization called attention to the continuing, worldwide high prevalence of pain at the end of life and the inadequate supply of opioids, particularly in developing nations. - Pain at the end of life is preventable or treatable in most cases: it is every nurse's role to ensure that pain is assessed, prevented where possible, and managed. - Although the means to relieve pain have existed for many years, the continued, pervasive undertreatment of pain has been well documented - Poorly managed pain affects the psychological, emotional, social, and financial well-being of patients. - Despite studies demonstrating the negative effects of inadequate pain management, practice has been slow to change. - Every clinician should be able to assess and oversee the basic management of pain - Patients who are receiving an established regimen of analgesics should continue to receive those medications as they approach the end of life. - Inability to communicate pain should not be equated with the absence of pain - Although most pain can be managed effectively using the oral route, as the end of life nears, patients may be less able to swallow oral medications due to somnolence or nausea. - Patients who have been receiving opioids should continue to receive equianalgesic doses via rectal or sublingual routes. - Concentrated morphine solution can be effectively delivered by the sublingual route, because the small liquid volume is well tolerated even if swallowing is not possible. - As long as the patient continues to receive opioids, a regimen to combat constipation must be implemented. - If the patient cannot swallow laxatives or stool softeners, rectal suppositories or enemas may be necessary. - The nurse should educate the family about continuation of comfort measures as the patient approaches the end of life, how to administer analgesics via alternative routes, and how to assess for pain when the patient cannot verbally report pain intensity. - Because the analgesics given orally or rectally are short acting and typically scheduled as frequently as every 3 to 4 hours around the clock, there is always a strong possibility that a patient approaching the end of life will die in close proximity to the time of analgesic administration. - If the patient is at home, family members administering analgesics should be prepared for this possibility. - They need reassurance that they did not "cause" the death of the patient by administering a dose of analgesic medication.

4 Levels Of Hospice Care: General Inpatient Care:

- Inpatient stay for symptom management that cannot be provided in the home. - This is not subject to the guidelines for a standard hospital inpatient stay.

Palliative Care: Interdisciplinary Team:

- Is necessary to bring about the desired outcomes for patients and their families. - Interdisciplinary collaboration, which is different from multidisciplinary practice, is based on communication and cooperation among the various disciplines, with each member of the team contributing to a single integrated care plan that addresses the needs of the patient and the family. - In contrast, multidisciplinary care refers to participation of clinicians with varied backgrounds and skill sets but without coordination and integration.

Hope Nursing Interventions:

- Listening attentively - Encouraging sharing of feelings - Providing accurate information - Encouraging and supporting the patients' control over their circumstances, choices, and environment whenever possible - Assisting patients to explore ways for finding meaning in their lives - Encouraging realistic goals - Facilitating effective communication within families - Making referrals for psychosocial and spiritual counseling - Assisting with the development of supports in the home or community when none exist

Skills For Communicating With The Seriously Ill:

- Nurses need to develop skill and comfort in assessing patients' and families' responses to serious illness and planning interventions that support their values and choices throughout the continuum of care - Throughout the course of a serious illness, patients and their families encounter complicated treatment options and bad news about disease progression. - They may have to make difficult decisions at the time of diagnosis, when disease-focused treatment fails, when the effectiveness of a particular intervention is being discussed, and when decisions about hospice care are presented. - These critical points on the treatment continuum demand patience, empathy, and honesty from nurses. - Discussing sensitive issues such as serious illness, hopes for survival, and fears associated with death is never easy. - However, the art of therapeutic communication can be learned and, like other skills, must be practiced to gain expertise. - Like other skills, communication should be practiced in a "safe" setting, such as a classroom or clinical skills laboratory with other students and clinicians. - In practice, communication with each patient and family should be tailored to their particular level of understanding and values concerning disclosure. - Before disclosing any health information about a patient to family members, nurses should follow their agency's policy for obtaining patient consent in accordance with Health Insurance Portability and Accountability Act rules.

National Consensus Project for Quality Palliative Care: Physical Aspects Of Care:

- Pain, other symptoms, and side effects are managed based on the best available evidence, with attention to disease-specific pain and symptoms, which is skillfully and systematically applied.

Palliative Care:

- Palliative care is an approach to care for the seriously ill that has long been a part of cancer care. - More recently, it has been expanded to address the comprehensive symptom management, psychosocial care, and spiritual support needed to enhance the quality of life for any person with advanced illness. - Although hospice care is considered by many to be the gold standard for palliative care, the term hospice is generally associated with palliative care that is delivered at home or in special facilities to patients who are approaching the end of life - Palliative care and hospice care have been recognized as important bridges between cure-oriented treatment and the needs of terminally ill patients and their families for comprehensive care in the final years, months, or weeks of life. - Advocates for improved care for the dying have stated that acceptance, management, and understanding of death should become fully integrated concepts in mainstream health care. - Palliative care, which is conceptually broader than hospice care, is both an approach to care and a structured system for care delivery that aims to optimize "quality of life by anticipating, preventing and treating suffering" - Palliative care is characterized by interdisciplinary communication and coordination across the trajectory of serious illness, emphasizing management of psychological, social, and spiritual problems in addition to control of pain and other physical symptoms. - As the definition suggests, palliative care does not begin when cure-focused treatment ends but instead is offered "concurrently with or independent of curative or life-prolonging care" - The goal of palliative care is to improve the patient's and family's quality of life, and indeed many aspects of this type of comprehensive, comfort-focused approach to care are applicable earlier in the process of life-threatening disease and in conjunction with cure-focused treatment.

Managing Physiologic Responses To Terminal Illness:

- Patients approaching the end of life experience many of the same symptoms, regardless of their underlying disease processes. - Symptoms in terminal illness may be caused by the disease, either directly (e.g., dyspnea owing to chronic obstructive lung disease) or indirectly (e.g., nausea and vomiting related to pressure in the gastric area), by the treatment for the disease, or by a coexisting disorder that is unrelated to the disease. - Symptoms should be carefully and systematically assessed and managed. - The patient's goals should guide symptom management. - Medical interventions may be aimed at treating the underlying causes of the symptoms or reducing the impact of symptoms. - For example, a medical intervention such as thoracentesis (an invasive procedure in which fluid is drained from the pleural space) may be performed to temporarily relieve dyspnea in a patient with pleural effusion secondary to lung cancer. - Pharmacologic and non-pharmacologic methods of symptom management may be used in combination with medical interventions to modify the physiologic causes of symptoms. - For example, pharmacologic management with low-dose oral morphine effectively relieves dyspnea, and mindful breathing can relive distress for patients and families receiving palliative care - As is true with pain, the principles of pharmacologic symptom management are the use of the smallest dose of the medication to achieve the desired effect, avoidance of polypharmacy, anticipation and management of adverse effects, and creation of a therapeutic regimen that is acceptable to the patient based on their goals for maximizing quality of life. - The patient's goals take precedence over the clinicians' goals. - Although clinicians may believe that symptoms must be completely relieved whenever possible, the patient might choose instead to decrease symptoms to a tolerable level rather than to relieve them completely if the side effects of medications are unacceptable to him or her. - This often allows the patient to have greater independence, mobility, and alertness and to devote attention to issues that he or she considers of higher priority and greater importance.

National Consensus Project for Quality Palliative Care: Psychological & Psychiatric Aspects Of Care:

- Psychological status is assessed and managed based on the best available evidence, which is skillfully and systematically applied. - When necessary, psychiatric issues are addressed and treated.

Mourning:

- Refers to individual, family, group, and cultural expressions of grief and associated behaviors. - Both grief reactions and mourning behaviors change over time as people learn to live with the loss. - Although the pain of the loss may be tempered by the passage of time, loss is an ongoing developmental process, and time does not heal the bereaved individual completely. - That is, the bereaved do not get over a loss entirely, nor do they return to who they were before the loss. - Rather, they develop a new sense of who they are and where they fit in a world tha

Assisted Suicide:

- Refers to providing another person the means to end their own life. - Physician-assisted suicide involves the prescription by a physician of a lethal dose of medication for the purpose of ending someone's life (not to be confused with the ethically and legally supported practice of withholding or withdrawing medical treatment in accordance with the wishes of the terminally ill person).

Bereavement:

- Refers to the period of time during which mourning for a loss takes place.

Grief:

- Refers to the personal feelings that accompany an anticipated or actual loss.

Communication:

- Remarkable strides have been made in the ability to prolong life; however, attention to care for the dying lags behind. - On one level, this should come as no surprise. - Each of us will eventually face death, and most would agree that one's own demise is a subject that he or she would prefer not to contemplate. - Confronting death in our patients often uncovers our own deeply rooted fears. - To develop a level of comfort and expertise in communicating with seriously and terminally ill patients and their families, nurses must first consider their own experiences with and values concerning illness and death. - Reflection, reading, and talking with family members, friends, and colleagues can help nurses examine beliefs about death and dying. - Talking with people from different cultural and religious backgrounds can help nurses view personally held beliefs through a different lens and can increase their sensitivity to death-related beliefs and practices in other cultures. - Discussion with nursing and non-nursing colleagues can also be useful; it may reveal the values shared by many health care professionals and may also identify diversity in the values of patients in their care. - Values clarification and personal death awareness exercises can provide a starting point for self-discovery and discussion.

Keys To Effective Listening:

- Resist the impulse to fill the "empty space" in communication with talk. - Allow the patient and the family sufficient time to reflect and respond after asking a question. - Prompt gently: "Do you need more time to think about this?" - Avoid distractions (noise, interruptions). - Avoid the impulse to give advice. - Avoid canned responses: "I know just how you feel." - Ask questions. - Assess understanding—your own and the patient's—by restating, summarizing, and reviewing.

Use of Pharmacologic Agents to Stimulate Appetite:

- Several pharmacologic agents are commonly used to stimulate appetite in patients with anorexia, although only progestational agents (e.g., megestrol acetate [Megace]) and glucocorticoids (e.g., dexamethasone [Dexpak]) have been found to stimulate appetite when examined in well-controlled research studies - However, these agents have not been found to improve survival or quality in life in patients approaching end of life - Dexamethasone initially increases appetite and may provide short-term weight gain in some patients. - It should be considered for those patients whose life expectancy is limited because the beneficial effects may be limited to the first few weeks of therapy and side effects increase over time - Therapy may need to be discontinued in patients with a longer life expectancy; after 3 to 4 weeks, corticosteroids interfere with the synthesis of muscle protein. - Megestrol acetate produces temporary weight gain of primarily fatty tissue, with little effect on protein balance. - This agent carries risk of serious side effects, including thromboembolism, and risk increases with prolonged use - Dronabinol is a psychoactive compound found in cannabis that may be helpful in reducing nausea and vomiting, appetite loss, pain, and anxiety, thereby improving food and fluid intake in some patients. - However, in most patients, it is not as effective as other agents for appetite stimulation. - Although dronabinol may have beneficial effects on appetite in patients with advanced cancer, it has not been shown to be more effective than megestrol. - In addition, it possesses undesirable central nervous system side effects

National Consensus Project for Quality Palliative Care: Care Of Patient At End Of Life:

- Signs and symptoms of impending death are recognized and communicated in developmentally appropriate language for children and patients with cognitive disabilities with respect to family preferences. - Care appropriate to this phase of illness is provided to the patient and the family.

National Consensus Project for Quality Palliative Care: Spiritual, Religious, Existential Aspects Of Care:

- Spiritual and existential dimensions are assessed and responded to based on the best available evidence, which is skillfully and systematically applied.

National Consensus Project for Quality Palliative Care: Cultural Aspects Of Care:

- The palliative care program assesses and attempts to meet the needs of the patient, family, and community in a culturally sensitive manner.

Closed Awareness:

- The patient is unaware of their terminal state, whereas others are aware. - Closed awareness may be characterized as a conspiracy between the family and the health care professionals to guard the "secret," fearing that the patient may not be able to cope with full disclosure about their status and the patient's acceptance of others' accounts of their "future biography" as long as the others give him or her no reason to be suspicious.

Suspected Awareness:

- The patient suspects what others know and attempts to find out details about their condition. - Suspected awareness may be triggered by inconsistencies in the family's and the clinician's communication and behavior, discrepancies between clinicians' accounts of the seriousness of the patient's illness, or a decline in the patient's condition or other environmental cues.

National Consensus Project for Quality Palliative Care: Ethical & Legal Aspects Of Care:

- The patient's goals, preferences, and choices are respected within the limits of applicable state and federal law, within current accepted standards of medical care, and form the basis for the plan of care.

Open Awareness:

- The patient, the family, and the health care professionals are aware that the patient is dying and openly acknowledge that reality.

Mutual Pretense Awareness:

- The patient, the family, and the health care professionals are aware that the patient is dying, but all pretend otherwise.

National Consensus Project for Quality Palliative Care: Structure & Process Of Care:

- The timely plan of care is based on a comprehensive interdisciplinary assessment of the patient and the family.

Recommendations For Improving End-Of-Life Care:

- Widespread and timely access to - Comprehensive coverage for palliative care services - Improved communication between providers - Greater emphasis on advance care planning, professional education and development - Stronger public education and engagement

Proxy Directive:

-The proxy directive (appointment and authorization of another person to make medical decisions on behalf of the person who created the advance directive when he or she can no longer speak for himself or herself) is an important addition to the living will or medical directive that specifies the signer's preferences. - These documents are widely available from health care providers, community organizations, bookstores, and the Internet. However, their underuse reflects society's continued discomfort with openly confronting the subject of death. - Furthermore, the existence of a properly executed advance directive does not reduce the complexity of end-of-life decisions.

FICA: Spiritual Assessment:

A four-step spiritual assessment process using the acronym FICA involves asking the following questions: 1. Faith and belief: Do you consider yourself to be a spiritual or religious person? What is your faith or belief? What gives your life meaning? 2. Importance and Influence: What importance does faith have in your life? Have your beliefs influenced the way you take care of yourself and your illness? What role do your beliefs play in regaining your health? 3. Community: Are you a part of a spiritual or religious community? Is this of support to you and how? Is there a group of people you really love or who are important to you? 4. Address in care: How would you like me to address these issues in your health care?

A family is asking why their father with end-stage COPD is being referred to hospice care. The best response from the nurse would be: A.Hospice care provides complete pain control B.Hospice assists the family and patient to prepare for death C.Hospice will follow the patient's choice for "DNR" status D.Hospice is provided in the home and will allow the family to be involved in the decisions for care

B.Hospice assists the family and patient to prepare for death - Rationale: Hospice is an interdisciplinary team approach that provides services to the patient and family to prepare for death. Hospice care provides pain control but cannot guarantee complete pain control. All areas of health care follow the patient's choice for "DNR" status. This is not just a practice of Hospice, but a right for all patients in any setting. Hospice is provided in the home, hospital, nursing home, or hospice home settings. Other services may also be provided in a patients home such as home health or assisted living situations. The statement of hospice being only in the home setting may be confusing to the family and patient. All practice areas of healthcare encourages family involvement if the patient chooses this. This is not a practice followed only in hospice

A patient who is dying wants to talk to the RN about fears of dying. The patient tells the RN, "I know I am dying, aren't I?" What is an appropriate nursing response? A. "This must be very difficult for you" B. "Tell me more about what's on your mind" C. "I am sorry. I know exactly how you feel" D. "You know you are dying?"

D. "You know you are dying?" - Rationale: It is important to ask questions such as "You know you are dying?" It is important not to give advise such as "This must be difficult for you." It is important to allow the patient sufficient time to reflect and respond without forcing him or her to talk immediately by statements such as, "Tell me more about what is on your mind." It is important to avoid canned responses such as, "I know exactly how you feel."

Which awareness context occurs when the patient, family, and the health care professionals are aware that the patient is dying and openly acknowledge that reality? A.Closed B.Suspected C.Mutual pretense D.Open

D.Open - Rationale: Open awareness occurs when the patient, the family, and the health care professionals are aware that the patient is dying and openly acknowledge that reality. Closed awareness is when the patient is unaware of their terminal state, whereas others are aware. Suspected awareness is when the patient suspects what others know and attempts to find out details about his or her condition. Mutual pretense awareness is when the patient, the family, and the health care professionals are aware that the patient is dying but all pretend otherwise

What is one of the most common and feared responses by patients to terminal illness? A. Anorexia B. Cachexia C. Dyspnea D. Pain

D.Pain - Rationale: Prevalence of pain is as high as 50% in patients with cancer of any type as well as in terminally ill patients. Dyspnea is an uncomfortable awareness of breathing that is common in patients approaching the end of life. Anorexia and cachexia are common in the seriously ill

Psychosocial Issues:

Nurses should: -Be both culturally aware and sensitive in their approaches to communication about death -Be willing to set aside their own assumptions and attitudes

Advanced Directives:

•Advance directives are written documents that allow competent people to document their preferences regarding -Use or abatement of medical treatment at the end of life -Specify their preferred setting for care -Communicate other valuable insights into their values and beliefs - The social and legal evolution of advance directive documents represents some progress in people's willingness to both contemplate and communicate their wishes concerning the end of life - Now legally sanctioned in every state and federally sanctioned through the Patient Self-Determination Act of 1991, advance directives are written documents that allow competent people to document their preferences regarding the use or abatement of medical treatment at the end of life, specify their preferred setting for care, and communicate other valuable insights into their values and beliefs. - The proxy directive (appointment and authorization of another person to make medical decisions on behalf of the person who created the advance directive when he or she can no longer speak for himself or herself) is an important addition to the living will or medical directive that specifies the signer's preferences. - These documents are widely available from health care providers, community organizations, bookstores, and the Internet. However, their underuse reflects society's continued discomfort with openly confronting the subject of death. - Furthermore, the existence of a properly executed advance directive does not reduce the complexity of end-of-life decisions. - The Patient Self-Determination Act requires that health care entities receiving Medicare or Medicaid reimbursement must ask whether patients have advance directives, provide information about advance directives, and incorporate advance directives into the medical record. - However, advance directives should not be considered a substitute for ongoing communication among the health care provider, patient, and family as the end of life approaches.

Barriers to Improving End-of-Life Care:

•Physicians reluctance to refer to hospice: -Difficulties in making a terminal prognosis (especially for those patients with no-ncancer diagnoses) -The strong association of hospice with death -Advances in "curative" treatment options in late-stage illness -Financial pressures on health care providers that may cause them to retain rather than refer hospice-eligible patients