Nursing Care of Patients at the End of Life PDF

CHAPTER 17 Nursing Care of Patients at the End of Life Amanda J. Miller, Betsy Murphy KEY TERMS advance medical directive (ad-VANTS MED-ih-kuhl dur-EK-tiv) advocate (AD-vuh-ket) artificial feeding (ART-ih-FISH-uhl FEE-ding) artificial hydration (ART-ih-FISH-uhl hy-DRAY-shun) do not resuscitate (DNR...

CHAPTER 17 Nursing Care of Patients at the End of Life Amanda J. Miller, Betsy Murphy KEY TERMS advance medical directive (ad-VANTS MED-ih-kuhl dur-EK-tiv) advocate (AD-vuh-ket) artificial feeding (ART-ih-FISH-uhl FEE-ding) artificial hydration (ART-ih-FISH-uhl hy-DRAY-shun) do not resuscitate (DNR) (DOO not re-SUSS-ih-TATE) durable power of attorney (DUR-uh-buhl POW-ur OV uh-TUR- nee) hospice (HOS-pis) living will (LIH-ving WIL) palliative (PAL-ee-uh-tiv) postmortem care (pohst-MOR-tum CARE) CHAPTER CONCEPTS Collaboration Comfort Communication Grief and loss Growth and development  LEARNING OUTCOMES 1. Identify characteristics of the patient who is approaching the end of life. 2. List legal documents for patients with life-limiting illness. 3. Explain choices that are available to patients at the end of life. 4. Demonstrate empathetic communication with dying patients and their families. 5. Describe physical changes that may occur during the dying process. 6. Specify nursing interventions for patients at the end of life. 7. Describe postmortem care. 8. Plan nursing interventions for the grieving patient and family. 9. Explain compassion fatigue. 0. Discuss the role of the licensed practical nurse/licensed vocational nurse in hospice care. A GOOD DEATH Despite our best efforts, there will come a time when our patients die. Death is the expected end to life. In the 21st century, most Americans die from acute and chronic illnesses such as cancer, heart disease, stroke, and dementia. We have the technology to prolong life, but sometimes this longer life can carry profound disability and reduced quality of life. Our patients sometimes tell us that this is not what they intended for the last phase of life. What is the role of the nurse with patients nearing the end of life? Two priorities are to (1) identify patients nearing the end of life and (2) help them define and communicate their end-of-life goals to ensure that their wishes are understood and followed. Perhaps the most important role for nurses is to validate our patients’ needs and concerns as they move through the series of changes leading to a good death. Dying is, after all, the final phase of our growth and development. The developmental tasks associated with this phase involve reflecting on life accomplishments and saying “goodbye,” “I’m sorry,” and “I love you.” The goal of having a “good death” is a valid one. Multiple studies have focused on identifying the needs of terminally ill patients and their families. According to the National Institute on Aging, “People who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks” (2017). These needs may be met with collaboration between the patient, physician, nurse, and caregivers. This partnership helps facilitate patients’ desires and focuses on how best to help them achieve their goals. Nurses who choose to provide care for the dying will experience personal growth in their own lives. Self- reflection about our own mortality can help us to look more deeply at our beliefs, values, and priorities. This can result in a richer, more focused life. IDENTIFYING SYMPTOMS OF IMPENDING DEATH According to Cross and Warraich (2019), most Americans say that they want to die at home, and this is now the most common setting where death takes place. “Home” for many patients means the place where they are most comfortable, surrounded by caregivers who understand their needs and provide attentive care. Home can be where they live independently or with others, such as a continuing care retirement community, assisted living facility, or nursing home. Nurses who are working in long-term care and assisted living facilities will find themselves in a position to support these patients and their families in planning for a good death. Because many patients die within months of admission to long-term care facilities, their preferences should be identified soon after admission. Without proper documentation available, patients who become ill are routinely transported to the hospital, possibly receiving unwanted treatments. What are common signs and symptoms in patients nearing the end of their lives? Some patients exhibit rapid decline in their condition despite aggressive treatment. They may also have accompanying weight loss, increased dependency in activities of daily living, increased hospitalizations, mental status changes, and increased sleep. Knowing these symptoms can help to identify patients who are dying. Another symptom of decline is aspiration, a risk associated with recurrent pneumonia. Decreased respiratory muscle strength, lack of lung elasticity, and poor immune response make meaningful recovery unlikely. Older patients with poor renal and cardiac function are also at high risk for dying. For some older patients with chronic illness, many aggressive treatments such as IV fluids or chemotherapy offer little benefit.  For most patients and their families, the transition from treating an illness to allowing the patient to die comfortably is a gradual process. Figure 17.1 shows the evolving relationship between treatments intended to cure and treatments intended to comfort as the patient approaches the end of life. As curative therapies are reduced, comfort care, also known as palliative measures, is increased. This chapter explores some of the choices people need to make at the end of life and the interventions you can use to help patients during this time. FIGURE 17.1 The simultaneous care model. ADVANCE DIRECTIVES, LIVING WILLS, AND DURABLE MEDICAL POWER OF ATTORNEY The Patient Self-Determination Act, which took effect in 1991, ensures that every patient has the right to accept or refuse any medical treatment that is offered. The act also requires health-care professionals to ask patients entering a hospital if they have prepared advance medical directives. These directives include the patient’s advance set of instructions for health- care wishes (sometimes called a living will). In preparing advance medical directives, patients are exercising their right to make their wishes known regarding specific medical treatments if they become unable to express their decisions. Check individual state policy to confirm what is legal within that state. A durable power of attorney (DPOA) for health care specifies a person who (1) will speak for a patient when that patient cannot speak and (2) will honor the patient’s instructions. Many states provide standard forms to use and may require the patient to have both a DPOA for health care and an advance directive to ensure the patient’s wishes are followed. An attorney, although not required, may be helpful in preparing these documents. The nurse may encourage patients not only to fill out the necessary forms but also to discuss their wishes with all caregivers. Patients are often reluctant to complete these documents ahead of time, as they may be overwhelmed or concerned that they may change their minds about treatments in the future. It is helpful to talk about advance care planning as a process that may require collaboration with other team members, such as a social worker, to complete. Patients can change their minds at any time about treatment and write a new advance directive. If no advance directive is on record or a DPOA has not been chosen, the state law where the patient resides will dictate their proxy decision maker. PRACTICE ANALYSIS TIP Linking NCLEX-PN® to Practice The LPN/LVN will: Provide information about advance directives. Provide end-of-life care and education to clients. END-OF-LIFE CHOICES Cardiopulmonary Resuscitation During the 1960s, cardiopulmonary resuscitation (CPR) was developed to rescue people who suffered a cardiac or respiratory arrest. Today, CPR has become standard in many health-care facilities. All patients receive CPR unless they have documentation in place that opposes receiving CPR. Patients often have the misperception that CPR can save most lives. In reality, very few lives are saved by CPR. The overall rate of survival that leads to hospital discharge for someone who experiences cardiac arrest is about 10.6% (Ouellette et al, 2018). One reason for the low survival rate is that CPR must begin within 3 to 5 minutes of collapse. The most successful cases are those in which CPR and an automatic external defibrillator (AED) are used within 3 to 5 minutes of collapse. A helpful way of presenting the CPR option to patients and families is to provide them accurate information about outcomes. They should understand that after CPR, their underlying health condition will still be present, and they will likely be further debilitated. Reassure patients that they will receive appropriate comfort care as they die a natural death. Do Not Resuscitate Orders A “No Code,” or do not resuscitate (DNR) order, is written in collaboration with the patient, family, and health-care provider (HCP), usually after it has been determined that the patient will not benefit from CPR. The patient will still have choices regarding all other treatments. A DNR order simply means that CPR will not be done, and the patient will be allowed to die a natural death. Mostafa and El-Din (2019) suggest that CPR is not an effective treatment for those who are nearing the end of life. An advance directive or hospital DNR order does not cover patients’ wishes in the home or nursing home. A durable DNR (also called an out-of- hospital or prehospital DNR) is a document for emergency medical services workers to follow. The form may be called Physician Orders for Life- Sustaining Treatment (POLST), Medical Orders for Life-Sustaining Treatment (MOLST), Medical Orders for Scope of Treatment (MOST), or Physician Orders for Scope of Treatment (POST). This document is signed by both the patient or the patient’s decision maker and the patient’s HCP. Emergency medical services workers are trained to look for such a document, often in a bright color and hanging on the patient’s refrigerator. Document names may vary by state. Some patients fear that if they choose a DNR status, a treatment that may benefit them might be withheld. It is important to tell patients that DNR does not mean do not treat. Patients who have a DNR order will still receive treatments such as oxygen and medications to manage their symptoms and will be given psychosocial support to ensure a comfortable death. Furthermore, a patient can choose which treatment options they would like, if any, and still remain a DNR. This may include defibrillation or medication administration. A gentler way of discussing these choices may be to ask patients and families if they prefer to allow a natural death. All DNR orders and discussions with the patient and their caregivers should be documented on the patient’s chart (“Patient Perspective”). LEARNING TIP A Full Code order means that, if the patient’s heart stops, everything possible will be done to save the patient, including CPR. Often, the patient will require artificial ventilation following CPR. A No Code/Full Therapeutic Support order means that everything possible will be done up to but not including CPR or ventilator. A No Code/Comfort Care Only order means that only medications and treatments that keep the patient comfortable will be provided. Patient Perspective Anna My mom, Anna, was diagnosed with cardiomyopathy and congestive heart failure when she was just 60 years old. At that time, she was still working and had recently remarried. She thought she had many years left in life. She did not have an advance directive—why would she? Two years later, as her disease progressed, she decided she did not ever want to “live on machines.” So, with the help of her doctor and our family, she wrote her living will and made her new husband her durable power of attorney for health care, with me as his backup person. Because she was still functioning well, with lots of medications and occasional hospitalizations, she chose a do not resuscitate (DNR) status, but with full therapeutic, aggressive interventions. She even took a tour of Europe during this time in her life, knowing she would not be able to do it later. By age 67, she had a lot less energy to do things, and her heart failure really cramped her lifestyle. But she still enjoyed life, and her goal was to see my son, who was her oldest grandson, graduate from high school. She considered a heart transplant, but her doctor told her she was too old to qualify. She did have a new kind of valve surgery that was supposed to make her feel better, but it didn’t help much. Three months after my son’s graduation, my mom was hospitalized several times with progressively worse outcomes. She weighed barely 100 pounds and could not eat much. She was only 70 years old and still looked and acted so young! Finally, she was in a semicoma in the hospital, and our family had to make the difficult decision to withdraw all therapeutic support. She was now a DNR, with comfort measures only. We were confident this would be what she wanted because we had talked about it with her. She was alert enough to let us know that she wanted to die at home. She was discharged home with hospice care and died within a week. I moved in for her final days to help out. Between her husband, me, and her hospice team (which was a godsend), as well as frequent visits from family and her minister, she was well  cared for. We kept her comfortable with lots of attention and morphine. She was alert and able to converse some of the time. She ate what and when she wanted, which amounted to one- quarter of a cheese and tomato sandwich one day, but she enjoyed it! She could finally enjoy a glass of grapefruit juice, which she had been unable to have for years because it interacted with one of her heart medications. At the end, she died with me holding her left hand and her husband holding her right. We were telling her we loved her. It was a good death. CLINICAL JUDGMENT Mrs. Hung has written an advance directive, specifying her health- care wishes should she become incapacitated. Because she has advanced disease, she tells you she would not want to be resuscitated if she has a cardiac arrest. She is currently hospitalized but will be discharged to her home in a few days. 1. What documents does Mrs. Hung need to have in place to ensure she will not receive unwanted resuscitation? 2. What health-care team members should you collaborate with in helping Mrs. Hung through this process? Suggested answers are at the end of the chapter. Artificial Feeding and Hydration Healthy patients who are unable to eat while recovering from an acute illness may benefit from artificial feeding or artificial hydration (also called clinically assisted nutrition and hydration [CANH]). For example, a patient may benefit from receiving parenteral nutrition (see Chapter 7) or tube feeding to prevent weight loss while receiving chemotherapy or radiation, as both treatments are known to cause weight loss. Other patients may be unable to eat or drink as a result of a chronic illness with multiple medical problems, or failure to thrive. Failure to thrive is defined as “a syndrome of weight loss, decreased appetite and poor nutrition, and inactivity, often accompanied by dehydration, depressive symptoms, impaired immune function, and low cholesterol” (Agarwal, 2020). Such patients will not likely benefit from CANH. If the patient is able to swallow, they should be allowed to eat and drink when, what, and how much they choose. However, research has shown that CANH increases the risk of aspiration, pressure ulcers, edema, heart failure, infections, hospital admissions, and discomfort in terminally ill patients (Carter, 2020). Once the body reaches a point of cachexia, it can no longer break down nutrients like before. In addition, some studies suggest that dehydration can benefit the terminal patient by releasing increased naturally occurring endorphins, providing analgesia and a heightened state of well- being (Suchner et al, 2019). Other benefits may include fewer secretions with less shortness of breath, reduced swelling, and less urination, resulting in reduced risk of skin breakdown. Providing families with evidence-based information as part of advance care planning can help families make the best possible decisions for their loved ones. See the nursing diagnosis Impaired Oral Mucous Membrane Integrity in the “Nursing Care Plan for the Patient at the End of Life” later in this chapter for suggestions to increase comfort in the patient unable to drink. The issue of feeding at the end of life is emotionally difficult for some families. Bringing favorite foods may be one way family and friends show love and communicate caring. The following are three ways you can support families in making decisions about feeding: Identify goals of care and evaluate whether artificial feeding will help meet those goals. Weigh the benefits and burdens of feeding. Help the family find alternative ways (besides feeding) to communicate love, such as skin care, mouth care, or reading to their loved one. Hospitalization Patients may go to the hospital at the end of life to manage illness or symptoms, to relieve family caregivers, or sometimes even to feel safe. However, there are also burdens associated with hospitalization for older adult patients approaching the end of life, and they may decline more rapidly in a hospital setting. When removed from predictable routines and known caregivers, the older patient often suffers from confusion, decreased appetite, increased risk of infection, and withdrawal (Allers et al, 2019). Frail patients with poor immunity risk often develop infections. They may enter the hospital with one infection and be discharged with another infection. Patients in nursing facilities who are approaching the end of life may benefit from having a “do not hospitalize” order. This will keep them in an environment that feels safe and preserves their chosen quality of life. Having hospice care established (see next section) in nursing facilities reduces the chances of unwanted hospital and intensive care unit admissions. Hospice Care Hospice service, or end-of-life care, is covered as a benefit under most insurance coverages and Medicare. Hospice can be provided in various settings, including the patient’s home, assisted living facilities, hospitals, and nursing homes when there is a signed contract between the hospice organization and the facility (see “Home Health Hints”). There are freestanding hospice facilities, but these often require an out-of-pocket expense to the patient for room and board, unless the patient qualifies for a grant or receives other financial assistance to help with these costs. According to Cross and colleagues (2020), home hospice care ranges from $153.72 to $194.50 per day to an inpatient cost of $1,021.25 per day. To qualify for hospice care, a patient must have an estimated prognosis of 6 months or less, assuming the illness runs the typical course. Patients can receive hospice care longer than 6 months if their health continues to decline. Some indicators of a 6-month or less prognosis (regardless of diagnosis) are 10% unintentional loss of weight in 6 months, mental status decline, increased weakness, frequent hospital admissions, and recurrent infections. The goal of hospice care is holistic: to manage symptoms such as pain and nausea, to provide emotional and spiritual counseling for the patient and family, and to support the patient in achieving their goals of care. Each patient is assigned a multidisciplinary hospice team to assist with care (Table 17.1). In addition, medications, medical supplies, and medical equipment are covered by the hospice benefit if they are related to the terminal diagnosis.  Home Health Hints Encourage discussion regarding advance directives with the patient and family/caregiver early in the care process. Decisions regarding resuscitation and the use of technology to prolong life are more difficult when the patient is in crisis. Allow time during your visit to sit with the patient and caregiver. Sitting quietly lets the patient and caregiver know you are there to meet both physical and emotional needs. Encourage family involvement with care. Caregivers need reassurance that they are not going to hurt the patient; take the time to teach them how to assist the patient with basic care, including administration of medications. Prepare the caregiver on signs of impending death. Offer resources such as books, handouts, and reputable Web sites. When the patient is no longer conscious, encourage the family to continue to spend time at the bedside sharing thoughts and happy memories with the patient. It is theorized that the last sensation to be lost is hearing. Hospice care does not provide 24-hour in-home health care, but a nurse is available for home visits 24 hours a day. Nurses and other team members also make regular visits to support and teach the patient and family. In times of medical crisis or caregiver fatigue, many insurance providers and home hospice agencies provide short-term inpatient hospice services or respite care. CUE RECOGNITION 17.1 You are passing medications to your residents when a family member runs out of a room in a panic, yelling, “He’s not breathing! Help!” What do you do? Suggested answers are at the end of the chapter. CUE RECOGNITION 17.2 A resident is transferred from the hospital to the long-term care facility where you work. The resident has a gastrostomy tube for artificial feeding. The resident pulls the tube out. What do you do? Suggested answers are at the end of the chapter. Table 17.1 The Hospice Team Team Member Role Medical director—a physician or Works with the patient’s primary HCP, offering suggestions to other health-care provider (HCP) improve care. Directs team activities and often makes visits to the patient’s home. Nurse Makes routine home visits, assessing patient needs and implementing a plan of care. Nurses are available 24 hours per day to make visits as needed. Social worker Provides emotional counseling and long-term planning, assists patients with insurance issues, assists with completing an advance directive, and helps identify community resources. Chaplain or minister Provides spiritual counseling or coordinates care of spiritual issues with the patient’s chosen spiritual counsellor. May participate in funeral or memorial service. Home health-care aide Provides personal care, linen changes, and may assist with feeding the patient. Volunteers Support caregivers by staying with the patient while they leave the home. May also read to patient, run errands, etc. Bereavement counselor/team Provides counseling for family and significant others for 13 months after the patient’s death. COMMUNICATING WITH PATIENTS AND THEIR LOVED ONES Terminal illness is often a team experience that affects not only the patient but also their loved ones. The team includes the patient and may include blood relatives, friends, significant others, or partners. The primary role of the nurse is to facilitate a comfortable death that honors the patient’s choices. The nurse is the patient’s advocate, ensuring their wishes are communicated to loved ones and other members of the health-care team. In addition, the nurse is often the professional caregiver and educator of the nonprofessional caregivers and family members. Good communication requires active listening and honest answers. The nurse can help to identify patient choices and allow verbalization of fears. Nonverbal communication can be expressed through eye contact, body language, and tone of voice. Take time to identify your own communication barriers that may affect your ability to talk with families. Do you have fears about your own mortality or lack personal experience with death? Do you fear being blamed for decisions or disagree with decisions that were made? These barriers will affect your ability to support patients and families in crisis. Practice attentive listening with patients and families. Allow them to talk. Don’t change the subject. Know that you do not need to have all the answers. Your role can be to help them reflect on what they are communicating and to clarify their goals so you can advocate for them. Set the stage by sitting down to show you are not in a hurry (Fig. 17.2). Maintain eye contact, encourage patients to speak, repeat what they say to gain clarification, and reflect on its meaning. Some things to say to facilitate good communication include the following: “Tell me more about….” Repeat back what you hear: “I hear you saying….” “How can I help?” From the patient’s perspective, many factors influence the content and quality of communication with you. Trust is paramount between the nurse and the patient/caregiver. Fears may interfere with their hearing what they are being told about the illness. It may be helpful to ask what they heard the HCP tell them about the illness and prognosis. If they ask questions, answer honestly; dishonesty destroys trust and credibility (see “Evidence-Based Practice”). To successfully work with dying patients and families, you must demonstrate empathy, unconditional positive regard, trustworthiness, and clinical judgment. You are part of an interdisciplinary team (see Table 17.1). Each discipline has expertise and can lend support to patients and their loved ones using evidence-based information to make appropriate decisions. FIGURE 17.2 Nurses can be a comfort to patients and family members. Evidence-Based Practice Clinical Question Do patients with a terminal diagnosis understand their prognosis? Do health-care professionals benefit from end-of life communication training? Evidence Multiple studies have suggested that an alarming number of patients at the end of life do not understand their prognosis or options, which leads to futile aggressive care, increased pain, and decreased quality of life (Trevino et al, 2019). According to Abernethy and colleagues (2020), in a study of nearly 600 patients with advanced cancer, only 17.6% of the 71% who wanted to know their prognosis reported being told. In other words, if a patient at the end of life wants to know their prognosis, what keeps them from receiving this accurate and often life-changing information from their medical team? Abernethy and colleagues state that this is related to dread of disclosing “bad news” or destroying the patient’s hope, balancing sensitivity and honesty, and fear of damaging the rapport with the patient. We need to remember that although these discussions are often difficult, focus needs to be placed on meeting the patient’s needs, not our own. Medical teams have a responsibility to their patients to have end-of-life conversations that are effective and comprehensive (Pfeifer & Head, 2018). The earlier patients know about their disease and prognosis, the sooner they are able to make decisions about the end of their life. This leads to fewer unnecessary treatments, earlier pain intervention, and decreased symptom burden (Trevino et al, 2019). End-of-life communication training may increase health-care professionals’ ability to deliver prognoses to patients that are accurate and honest, while being culturally, racially, and socioeconomically sensitive (Loh et al, 2019). Implications for Nursing Practice It is important that all patients understand their disease status and prognosis. This may begin with health-care professionals’ ability to effectively communicate with those facing end-of-life issues.  Successful communication between health-care professionals and patients may help patients understand their conditions more clearly and increase their participation in end-of-life decision making. References: Abernethy, E., Campbell, G., & Pentz, R. D. (2019). Why many oncologists fail to share accurate prognoses: They care deeply for their patients. Cancer, 126(6), 1163–1165. https://doi.org/10.1002/cncr.32635 Loh, K., Mohile, S. G., Lund, J. L., Epstein, R., Lei, L., Culakova, E., McHugh, C., Wells, M., Gilmore, N., Mohamed, M. R., Kamen, C., Aarne, V., Conlin, A., Bearden, J., Onitilo, A., Wittink, M., Dale, W., Hurria, A., & Duberstein, P. (2019). Beliefs about advanced cancer curability in older patients, their caregivers, and oncologists. The Oncologist, 24(6). https://doi.org/10.1634/theoncologist.2018-0890 Pfeifer, M., & Head, B. A. (2018). Which critical communication skills are essential for interdisciplinary end-of-life discussions? AMA Journal of Ethics, 20(8), E724–731. https://doi.org/10.1001/amajethics.2018.724 Trevino, K. M., Prigerson, H. G., Shen, M., Tancredi, D. J., Xing, G., Hoerger, M., Epstein, R. M., & Duberstein, P. R. (2019). Association between advanced cancer patient‐ caregiver agreement regarding prognosis and hospice enrollment. Cancer, 125(18), 3259–3265. https://doi.org/10.1002/cncr.32188 COMPASSION FATIGUE Compassion fatigue can occur when caring for a loved one who is terminally ill. It is defined as “emotional, physical, and spiritual distress in those providing care to another” who is “experiencing significant emotional or physical pain and suffering” (Compassion Fatigue Awareness Project, 2020). Loved ones who care for the patient do so with the best intentions to help provide the person with a good death. Often, caregivers do not realize that caring for another human at the end of life is a 24-hour per day, 7-day per week undertaking. The patient’s cognition and physical body will undergo frequent changes and demands. The patient may have restlessness and agitation, or pain levels may quickly fluctuate. Without proper support, providing care in these circumstances can become emotionally and physically straining on the caregiver. Remember, the caregiver is already grieving the anticipated loss of the patient; this combined with lack of sleep, frequent demands of the patient, and the need for self-care can be exhausting. As the nurse, it is important to educate the caregiver on the importance of self-care, including adequate sleep, nutrition, exercise, and allowing time to grieve the patient. Offer to contact other professionals who may provide support to the caregiver, such as a social worker, chaplain, or volunteers. Validate the caregiver’s efforts and diligence in providing comfort to their loved one. THE DYING PROCESS This section discusses the expected changes in the days and hours before death. Assessing patients, planning and implementing treatments, and evaluating responses to interventions are all important. Nursing interventions are summarized in the “Nursing Care Plan for the Patient at the End of Life.” Educating family caregivers about what to expect is essential. Caregivers who anticipate the expected changes and understand the rationale behind the interventions are more successful in their caregiving and have fewer regrets or concerns after the death. The “Nursing Care Plan for the Patient at the End of Life” includes specific communications that may help caregivers understand what is happening and how they can help. Eating and Drinking As the body moves toward death, patients lose desire for food and fluids. They are conserving energy and often do not feel hunger. The swallowing reflex is impaired, so patients fear choking and may hold their mouth tightly closed when food or fluids are offered. This is normal, and the resulting dehydration will increase comfort due to endorphin production. Changes in Breathing Research suggests that as many as 70% of dying patients report shortness of breath during end-of-life care (Huffman & Harmer, 2020). Patients who are not alert must rely on their caregivers to identify their distress. Signs of distress are tachypnea (respiratory rate greater than 24 per minute), facial grimacing, gasping, and use of accessory muscles to breathe. Untreated dyspnea can lead to fear and agitation, resulting in worsening shortness of breath. Dyspnea can be effectively managed without aggressive treatment (see “Nursing Care Plan for the Patient at the End of Life”). Some patients also have episodes of apnea or Cheyne-Stokes respirations (Chapter 29) in the days or hours before they die. concentrate or relax and may show nonpurposeful motor activities such as picking at bed sheets. The patient may hallucinate or try to climb out of bed. Some physical causes may be reversible, so it is important to assess whether dyspnea, pain, urinary retention, or fecal impaction may be the cause. Restlessness may also be caused by medications. As kidney and liver functions decline, medication levels rise in the body and cause toxicity. Consult with the HCP and pharmacist to determine if all the medications the patient is receiving are beneficial or necessary. Table 17.2 reviews medications that may be helpful at the end of life. Unconsciousness Most patients are unconscious for hours or days before they die. Before they lose consciousness, their ability to see may be diminished. Hearing is the final sense to be lost. It is important for you to remember as you are caring for the patient and conversing with the family that your patient likely hears everything you are saying. Encourage the family to continue talking to the patient. CRITICAL THINKING & CLINICAL JUDGMENT Mr. Johnson is in the final hours of his life and has become increasingly short of breath throughout the day. With each inspiration, his respirations are moist and noisy. His family is extremely upset with his gurgling breathing. Currently, his respiratory rate is 30 per minute, and you notice he is using his accessory muscles to breathe. Critical Thinking (The Why) 1. What is the cause of his noisy breathing? Clinical Judgment (The How) 2. What can be done to help Mr. Johnson be more comfortable? 3. How can you help ease the family’s anxiety? Suggested answers are at the end of the chapter. Nursing Care Plan for the Patient at the End of Life Nursing Diagnosis: Impaired Gas Exchange related to dying heart and lungs as evidenced by dyspnea, apneic pauses, irregular breathing patterns, increase in oropharyngeal secretions, and change in respiratory rate Expected Outcomes: The patient will not be in distress and will appear comfortable. Evaluation of Outcomes: Is the patient’s breathing relaxed and is the patient calm? Intervention Rationale Evaluation Monitor respiratory rate and Increased rate and effort Is the patient in distress? Are effort. indicate distress. further interventions needed? Administer diuretics or Diuretics or antibiotics may Do diuretics or antibiotics antibiotics as ordered. be given to treat causes of reduce dyspnea? dyspnea and promote comfort, not to prolong life. Plan activities to conserve Spacing rest with activity Can the patient tolerate energy. helps reduce oxygen spaced activities? consumption. Place the patient in a recliner An upright position allows Does positioning reduce with pillows to 45 degrees. lung expansion. dyspnea? Offer alternative comfort Relaxation may reduce Are alternative measures measures, such as anxiety and resulting effective? massage for muscle dyspnea. relaxation. Administer oxygen as Oxygenation reduces Does oxygen relieve ordered. dyspnea. dyspnea? Place a fan in the room if the The feeling of a breeze may Does the patient report patient desires. reduce subjective feelings increased comfort or of dyspnea. appear more comfortable with a fan on? Administer low-dose Morphine causes peripheral Are respirations less labored morphine as ordered. vasodilation, which can after morphine reduce pulmonary edema. It administration? can also slow breathing and reduce anxiety. Nursing Diagnosis: Ineffective Airway Clearance related to excessive secretions and inability to swallow as evidenced by gurgling sound (“death rattle”) Expected Outcome: The patient’s airway will be free of secretions. Evaluation of Outcome: Is the patient’s breathing quiet and unlabored? Intervention Rationale Evaluation Adjust the patient’s head to This can help the patient Is breathing quieter? allow secretions to move swallow the secretions and down the throat. decrease frightening noise. Place a humidifier in the Humidified air can liquefy Is the patient able to cough room. secretions and help the up secretions? patient cough. If secretions are copious, Anticholinergic medications Do medications help dry administer hyoscyamine can dry secretions. secretions? (Levsin) as ordered. Administer low-dose Morphine has an Does morphine help quiet morphine as ordered. anticholinergic action that breathing and help the can help dry secretions. patient stay calm? Suction patient as needed. If secretions are copious, Is suctioning needed? Is it suctioning may be needed. effective? Explain to the family that, The informed family is able to Do the patient and family because the patient is cooperate and assist with understand reasons for unresponsive, a small keeping the patient care and feel secure that amount of secretions is comfortable. the patient is receiving the unlikely to be disturbing to best possible care? the patient. The noisy breathing can often be reduced by repositioning the patient’s head. Nursing Diagnosis: Imbalanced Nutrition: Less Than Body Requirements related to inability to swallow and lack of appetite as evidenced by refusing food and weight loss Expected Outcomes: The patient will state satisfaction with the amount and types of food offered. The patient will not aspirate food or fluid. Evaluation of Outcomes: Does the patient appear content with foods and fluids offered? Does the patient swallow without aspirating? Intervention Rationale Evaluation Let the patient choose when, The goal is no longer Is the patient receiving the how much, what to eat. Do providing adequate nutrition foods and fluids they want? not force the patient to eat if but keeping the patient they do not wish to. comfortable. Sit the patient upright to eat This can help the patient Does the patient swallow or drink. swallow and prevent effectively? aspiration. Explain to family, as needed, The informed patient and Do the patient and family that the patient is afraid to family are able to cooperate understand the reasons for swallow now because and assist with keeping the care and feel secure that swallowing is impaired and patient comfortable. the patient is receiving the it causes the patient to best possible care? choke. As the patient becomes dehydrated, the patient’s comfort will increase as the body produces naturally occurring anesthesia. Nursing Diagnosis: Impaired Oral Mucous Membrane Integrity related to dehydration, not eating, and medication side effects Expected Outcome: The patient’s mucous membranes will be clean and moist. Evaluation of Outcome: Are the patient’s mucous membranes clean and moist? Does the patient indicate that the mouth is comfortable? Intervention Rationale Evaluation If the patient is alert, offer ice These keep mucous Does the patient indicate chips or sips of water. membranes moist. their mouth feels comfortable? Provide frequent mouth care This can keep mucous Is the mouth clean and with sponge-tipped membranes moist when the moist? Toothettes. patient is not able to drink adequate fluids. Apply lip balm or lanolin to Lip balm and lanolin keep the Are lips smooth and moist? lips. mouth and lips from becoming dry and crusty. Nursing Diagnosis: Impaired Comfort (pain, terminal restlessness) related to disease process, dying process, and medications Expected Outcome: The patient will acknowledge that they are comfortable or, if unable to speak, will appear calm and peaceful, not restless or agitated. Evaluation of Outcome: Is the patient comfortable, calm, and peaceful? Intervention Rationale Evaluation Determine reversible causes Often, agitation is a sign of Can causes be identified? of agitation (e.g., pain or discomfort. Identifying and Are they removed? other discomfort, urine removing the cause of the retention or fecal impaction, discomfort can help calm medications that are no the patient. longer beneficial). Reposition the patient in bed Repositioning frequently can Does repositioning promote at least every 2 hours and promote comfort and relieve comfort? as needed. pressure on bony prominences. When other medical interventions are discontinued, the patient still needs to be repositioned regularly to prevent uncomfortable complications. Discuss with the HCP Many procedures are not Are any uncomfortable discontinuing all beneficial to the patient at procedures and uncomfortable procedures the end of life. Nonessential nonessential medications such as blood draws and medications are difficult to still being administered that finger sticks for blood swallow for some patients are not absolutely glucose, and discontinuing and are often ineffective at necessary? all nonessential the end of life. They should medications. be discontinued. If the cause of the agitation Medication may need to be Does medication promote cannot be determined, try administered based on comfort? medication for pain, objective observations if the dyspnea, or anxiety as patient is unable to ordered. communicate. Keep the patient safe with A fall would increase the Is patient safety maintained? one-on-one monitoring. patient’s discomfort. Keep the perineal area clean A wet brief is not comfortable. Is the patient clean and dry and dry, frequently checking Unchanged briefs can also with intact skin? adult briefs. lead to skin breakdown, another source of discomfort. Teach the patient and family The informed patient and Do the patient and family that restlessness can have family are able to cooperate understand the reasons for many causes. It can be a and assist with keeping the care and feel secure that sign of pain, bowel or patient comfortable. the patient is receiving the bladder problems, or a best possible care? medication issue. Tell them you will work with the HCP to improve the situation. Nursing Diagnosis: Hypothermia or Hyperthermia related to dysregulation of central nervous system Expected Outcomes: The patient’s temperature will be maintained as close to normal as possible, and discomfort from temperature extremes will be managed. Evaluation of Outcomes: Is temperature within normal limits? If unable to control temperature, does the patient appear comfortable? Intervention Rationale Evaluation Administer acetaminophen Acetaminophen is an Does acetaminophen reduce suppository as ordered. antipyretic. It is given by fever? suppository if the patient cannot swallow. Keep the patient clean and A fever can cause Is the patient kept dry and dry. Change gown and bed diaphoresis (excessive comfortable? linens as needed. sweating), and lying in damp sheets can be uncomfortable and cause skin breakdown. If the patient is cold, add Blankets warm the patient Are blankets helpful? blankets as needed. Do not without risking burns from use an electric blanket or electric heating devices. heating pad. Nursing Diagnosis: Acute Confusion related to neurologic changes Expected Outcomes: The family will voice understanding that confusion is not uncommon and will show appropriate responses if it occurs. Evaluation of Outcomes: Does the family respond appropriately to the patient during times of confusion? Intervention Rationale Evaluation Assure families that some If family is prepared, Is the family informed? Do confusion is common. confusion will be less family members verbalize disturbing. understanding of what to expect? Teach the family to not Sometimes patients talk Is the patient less distressed correct the patient but about their fears in after speaking? instead encourage the metaphor. Allowing them to patient to talk about what is express their fears happening. promotes relaxation and decrease loneliness. Keep a dim light on in the Being able to see clearly Is the light on? Is the patient room (but enough light to helps keep the patient able to orient on avoid shadows), and oriented if the patient awakening? remind the patient gently of awakens during the night. who is present. Explain to the family that Family members will be less Does the family respond many patients don’t make distressed if they appropriately to the sense at times. It is as if understand what is patient’s confused “they are in two worlds at happening. statements? the same time.” Patient will be less distressed if the family lets the patient talk about what the patient is experiencing. Nursing Diagnosis: Fear related to threat of death Expected Outcome: The patient will be treated as still present and respected, and not as though the patient is already gone. Evaluation of Outcome: Is communication respectful toward the patient? Intervention Rationale Evaluation When providing care, always Patients may be able to hear Are caregivers and family speak as if the patient can even when they appear to members sensitive to the hear you. When conversing be nonresponsive. Always patient’s presence when with family members in the assume the patient can communicating? room, remember that the hear you. patient also can hear what you are saying. When giving care, explain Knowing what is happening Does the patient appear softly to the patient what can reduce anxiety and calm? Does the patient you are doing and why. increase cooperation. respond to your explanations? Explain to the family that it is Continued communication Is communication believed that hearing is the can be comforting to both appropriate? last sense to go in the dying patient and family. patient. This can be a good  time to say the things they have not been able to say. Nursing Diagnosis: Grieving related to impending death Expected Outcome: The patient and family will be able to openly communicate their feelings to each other and say goodbye. Evaluation of Outcome: Are the patient and family able to communicate effectively and say goodbye to each other? Intervention Rationale Evaluation Encourage the family to be This can help the patient feel Is someone present with the present with the patient. less alone. Many patients patient as much as Just sit quietly and hold the fear dying alone. possible? patient’s hand for a period of time if they wish. Show appropriate concern. This promotes trust and Is the family communicating empowers family members openly with the HCPs? to ask for what they need. Provide a quiet environment These interactions serve as Do family members appear where loved ones can say valuable memories after the satisfied with their goodbye in a way that death and provide a feeling participation in the process? reflects their culture and that all participants did what values. they needed to do for their loved one. Consult a minister or religious A minister often has special Does the family appear to counselor of the family’s skills and training in benefit from the presence of choice. communicating with people a minister or religious during difficult times. counselor? Talking about an afterlife may also be comforting to the patient and family. Ask about the family’s Providing a culturally familiar Do the family members feel cultural and religious environment can reduce free to carry out cultural and beliefs, and allow time for patient’s and family’s religious beliefs? prayers and ceremonies. anxieties and give them more control over the process.  Table 17.2 Medications to Increase Comfort at the End of Life Medication Class/Action Opioids Bind to opioid receptors to reduce pain and dyspnea. Examples Nursing Implications morphine (MS, MS-IR, MS Contin, Roxanol) For pain and dyspnea. hydromorphone (Dilaudid) Longer-acting agents must be given routinely to fentanyl (Duragesic, Sublimaze, Actiq, Fentora) be effective. Give short-acting analgesia for 24 to 72 hours until longer-acting agents take effect. Do not cut patches before application. Wear gloves when applying or removing the patch because the drug may be absorbed during handling. Do not apply heat over a patch. Heat increases drug absorption and may cause overdoses. Used patches may still contain drug. Dispose of used patches to prevent accidental exposure to others, especially children and pets. Anxiolytics Depress the central nervous system to reduce anxiety. Examples Nursing Implications lorazepam (Ativan) Not first-line drugs for treating dyspnea. alprazolam (Xanax) Effective for dyspnea caused by anxiety. diazepam (Valium) Neuroleptics Reduce severe agitation and terminal restlessness. Examples Nursing Implications haloperidol (Haldol) Useful in treating anxiety or agitation when lorazepam is ineffective. Anticholinergics Treat excessive pharyngeal secretions. Examples Nursing Implications hyoscyamine (Levsin) Place a scopolamine patch behind the ear. atropine drops scopolamine (Transderm-Scop) glycopyrrolate (Robinul)  CARE AT THE TIME OF DEATH AND AFTERWARD Death has occurred when you observe the absence of heartbeat and respirations. The skin becomes pale and waxen, the eyes may remain open, and pupils are fixed. Telling the family that the patient has died should be done with sensitivity, with consideration of the family’s cultural and religious preferences. Provide small amounts of information according to the family’s level of understanding. Be sure to check and adhere to the policies in your health-care setting and state regarding death pronouncement and organ donation. Document the absence of pulse and lung sounds. Your goal now is to provide a personal closure experience for the family and caregivers. After death has been pronounced, you will provide postmortem care. First, remove the tubes, medical supplies, and equipment. Bathing and dressing the patient and making him or her look presentable for the family shows respect. Some cultures dictate specific care of the body after death and who should provide that care. Ask the family their preferences and follow them as long as they are within agency policy. Allow loved ones to assist with this process if they choose to do so. Work toward providing a clean, peaceful impression of the deceased. Position the body in proper alignment, insert dentures, place dressings on leaking wounds, and use briefs as needed. Allow loved ones time with the body. Do not remove the body from the room until the family is ready. Covering or uncovering the face at removal should be done according to the family’s preference. Additional activities, such as contacting the HCP or funeral home, should be carried out according to agency policy. PRACTICE ANALYSIS TIP Linking NCLEX-PN® to Practice The LPN/LVN will assist in providing postmortem care. GRIEF Grief is the emotional response to a loss. Loss is a daily experience in everyone’s life. People express grief in their own way based on their coping skills, life experiences, and cultural norms. In end-of-life care, grief is a process that begins before the patient’s death and continues through a series of tasks that the survivors move through to resolve grief. Feelings associated with grief may include anger, frustration, regret, guilt, sadness, and many others. Although each person is different, the process commonly includes three general stages (Table 17.3). Interventions for the grieving patient are addressed in the “Nursing Care Plan for the Patient at the End of Life.” NURSING PROCESS FOR THE GRIEVING FAMILY Data Collection Some things to consider when assessing grief include the following: Where is the family in the grief process? Is the stress of grieving exacerbating medical conditions? What support systems are available to the family? What interventions might facilitate their grief process? Nursing Diagnoses, Planning, and Implementation Although many nursing diagnoses may be appropriate, the priority diagnosis is simply Grieving. Grieving related to impending death or loss of a loved one EXPECTED OUTCOME: Family members will be able to express feelings of anger, guilt, or sadness. They will be able to think about the future and perform activities of daily living as needed. Simply be present. Sitting with the bereaved, without having to have all the answers, is very powerful. If you don’t know what to say, just be silent. Actively listen and let the bereaved talk about the loved one and their feelings about the loss. Ask open-ended questions to encourage them to continue talking. One of the greatest needs of the bereaved is to trust someone enough to share their pain.  Help family members identify their support systems (e.g., religious or spiritual affiliation, friends, family) and encourage them to use them. Support systems can help in practical ways (e.g., meals, transportation) as well as lend emotional support. Consider acknowledging the event by attending the memorial service or sending a card. This simple act of caring is very important to families. Table 17.3 Stages of Grief Stage Tasks Characteristics Stage 1 Acknowledge the reality of the loss. Has difficulty with feelings of Shock and Recognize the loss. numbness, emotional outbursts, poor disbelief daily functioning, and avoidance. Stage 2 Work through the pain by expressing Anger, bargaining, depression. May Experiencing the and experiencing the feelings. feel guilt over not preventing the death loss or not providing enough care. May feel angry at a loved one who has “left them behind.” May experience insomnia, loss of appetite, apathy, lack of interest in daily life. Stage 3 Adjust to an environment without the Finds hope in the future, participates in Reintegration deceased. social events, and feels more energetic. Evaluation Healing takes time. If interventions have been effective, family members will have the support to function effectively while they grieve. THE NURSE AND LOSS Working with dying patients triggers awareness of your own losses and fears about death and mortality. Adapting to the care of the dying requires that you explore and experience your personal feelings toward death. Unresolved losses from your past can resurface and affect your ability to care for dying patients. You may find that you continue to think about patients who have died long after the event. Portoghese and colleagues (2020) recognize that staff working within a palliative care environment may be exposed to patient suffering, and this takes its toll on the nurse. Unresolved grief can lead to symptoms that resemble burnout, such as insomnia, headaches, and fatigue. If you find yourself distancing and withdrawing from your dying patients, it is an indicator that you need to attend to caring for yourself. Some nurses may find counseling helpful to effectively process losses from the past and learn healthy ways to process future losses. Both formal and informal support systems should be in place to support staff through multiple losses. Informal support can be one-on-one sharing of experiences with coworkers, peers, pastoral counselors, and HCPs. Understanding and acknowledging your limitations, asking for help, and getting regular exercise and relaxation are important components. Some nurses find journal writing a helpful process; writing down feelings may allow you to release them. Formal support systems can be established in many ways: Preplanned gatherings where nurses can express feelings in a safe environment Post-clinical debriefings after difficult deaths to alleviate anxiety and promote learning Ceremonies such as memorial services in facilities to allow both staff and residents to recognize and honor the loss of patients In addition, many employers offer free employee assistance programs that provide counseling. Key Points The Patient Self-Determination Act ensures that every patient has the right to accept or refuse any medical treatment offered. The act also requires health-care practitioners to ask patients entering a hospital if they have prepared advance medical directives. A helpful way of presenting the DNR option to patients and families is to help them to understand that, after receiving CPR, their medical condition will not improve and that it is likely that they will be more debilitated. Reassure patients that they will receive aggressive comfort care as they are dying a natural death. Symptoms of impending death include a rapid decline in condition, weight loss, difficulty swallowing and aspiration, increased dependence, increased hospitalizations, mental status changes, and increased sleep. Patients who are losing weight because of a life-limiting illness with multiple medical problems will probably not benefit from artificial  feeding. The primary role of the nurse in communicating with dying patients and their loved ones is to facilitate a comfortable death that honors the choices of the patient and loved ones. The nurse, therefore, becomes the advocate, ensuring that patient wishes are communicated to other members of the health-care team. Good communication requires that you take time to listen, answer questions honestly, help identify choices, and allow verbalization of fears. Physical changes to expect during the dying process include diminished appetite, dyspnea/apnea, changes in ability to regulate body temperature, incontinence of bowel and bladder, decreased urine output, sleeping most of the time, mental status changes, terminal restlessness, and unconsciousness. Part of the nurse’s role is to support the family caregivers. Compassion fatigue can occur when caring for a loved one who is terminally ill. It is defined as “emotional, physical, and spiritual distress in those providing care to another” who are “experiencing significant emotional or physical pain and suffering.” It is important to educate caregivers on self-care and assist with locating resources to allow caregivers to do so. The dying process may involve changes in eating and drinking, changes in breathing, inability to swallow oral secretions, temperature changes, bowel and bladder incontinence, increased sleeping, mental status changes, restlessness, and unconsciousness. During postmortem care. you will remove tubes, medical supplies, and equipment. Bathe and dress the patient and make them look presentable for the family. Some cultures dictate specific care of the body after death and who should provide that care. Position the body in proper alignment, insert dentures, place dressings on leaking wounds, and use briefs as needed. Allow the family time with the body. Do not remove the body from the room until the family is ready. Working with dying patients may trigger awareness of your own losses and fears about death and mortality. Adapting to the care of the dying requires that you explore and experience your personal feelings toward death. Unresolved losses from your past can resurface and affect your ability to care for dying patients. Hospice care can help a family take care of a patient at home, but hospice nurses do not routinely provide 24-hour in-home health care. Rather, a  nurse is on call for in-home visits 24 hours a day. Nurses and other team members make regular visits to support and teach the patient and family. In times of medical crisis, short-term inpatient hospice services or respite care may be provided under some hospice benefits. SUGGESTED ANSWERS TO CHAPTER EXERCISES Cue Recognition 17.1: Check your assignment quickly to determine whether the patient has a DNR order. If so, go with the family member into the room and do a calm, respectful assessment to determine whether the patient has a heartbeat or is breathing. If not, gently tell the person that the resident has died, and remind them that the patient had chosen a DNR status. Notify the RN. If the patient does NOT have a DNR order, call for help and begin CPR. 17.2: Check the resident’s advance directive. The resident may have a directive in place about artificial feeding. Communicate with the family or patient advocate as needed. Have this information ready before notifying the HCP. Critical Thinking & Clinical Judgment Mrs. Hung 1. Mrs. Hung will need a DNR order in the hospital setting. When she goes home, she will need an out-of-hospital or prehospital, durable DNR (whatever the form is called, such as MOLST, MOST, POST, or POLST, in her state of residence). In addition, her family members should be aware of her wishes. 2. Her HCP, hospital social worker, or case manager can be helpful. She may also wish to speak with the chaplain or her spiritual advisor. Mr. Johnson 1. Mr. Johnson’s noisy breathing may be caused by saliva collecting in the back of the throat or by pulmonary edema. 2. Mr. Johnson may benefit from oxygen, positioning, and suctioning oral secretions. Low-dose morphine will decrease his respiratory rate and improve his oxygenation. Morphine also has a drying effect on secretions. If morphine is unsuccessful, the addition of an anticholinergic medication may be helpful. 3. The “death rattle” can be distressing for loved ones. Explain to the family what is happening, and how the care you are providing will help.