Ms. A is a 61-year-old single female diagnosed 8 months ago with non–small cell carcinoma of the lung, which metastasized to the spine and hip. She hadn't experienced any respiratory symptoms before her diagnosis. Because she never smoked and wasn't exposed to second-hand smoke on a regular basis, this diagnosis was quite a shock to her and her family. Her mother is 86 years old and resides in a retirement community. She's tearful at the thought of her only daughter being sick and finds it difficult to be cheerful. Ms. A's only living sibling is her 56-year-old brother.
Ms. A lived alone until shortly after her diagnosis when the pain in her hip prevented her from climbing the stairs to her second floor apartment. At that time, she moved in with her brother and sister-in-law who became her primary caregivers. Ms. A was treated with radiation therapy to her hip to reduce her pain and then given two rounds of chemotherapy in hopes of “getting all of the cancer.” Today, her oncologist met with her, reviewed her latest test results, stated that the cancer wasn't responding to the chemotherapy, and suggested hospice.
After the oncologist leaves the room, Ms. A looks at you, the nurse, and says, “Why hospice? I thought people go to a hospice when they're dying.” How do you respond?
What's hospice care?
Hospice is a specialized type of care given to people who are terminally ill. It focuses on providing compassionate care while maximizing a person's quality of life. Hospice care involves holistic care, which requires focusing on not just the physical aspects of comfort, but also the psychological, psychosocial, and spiritual aspects of care and comfort for the patient and family. In hospice care, the patient and family are treated as one entity.
An interdisciplinary group of team members—physicians, nurses, aides, social workers, counselors, chaplains, volunteers, therapists, and pharmacists—works with the patient and family members to provide the best possible care. For the next year following the patient's death, bereavement counselors and volunteers work with family members of all ages to provide support and comfort, especially during many of the important “firsts,” such as the deceased patient's birthday, wedding anniversary, holidays, and so on.
Hospice care can be initiated when an individual has a diagnosis of a life-limiting or terminal illness with a prognosis of 6 months or less. The patient must no longer be seeking curative treatment. Two physicians certify the patient's prognosis.
Although hospice is mainly a home-care model, patients have the ability to transfer to a hospice inpatient facility for symptom management and/or respite care. Most of the time people think of hospice patients as being diagnosed with cancer. However, other life-limiting illnesses, such as dementia, Parkinson disease, amyotrophic lateral sclerosis, cardiac disease, and lung disease, may be the primary diagnosis for hospice patients. Frequent hospitalizations for the same diagnosis, infections, or uncontrolled symptoms such as pain or vomiting; documented poor or futile prognosis; and/or prolonged length of stay without evidence of improvement may help indicate if a patient is appropriate for hospice services.
Because it may be difficult to determine this time frame until close to death, many patients are referred late to hospice care. According to the National Hospice and Palliative Care Organization (NHPCO), more than 60% of Medicare beneficiary patients received hospice care for less than 30 days in 2011.
For many insurance companies, hospice care is a provided coverage. In addition to interdisciplinary team members and bereavement support, hospice patients receive coverage for related medical equipment, supplies, and medications.
The 5 Cs
Hospice care focuses on the 5 Cs: communication, collaboration, compassionate caring, comfort, and cultural/spiritual care.
Communication and collaboration
Communication with patients and families must be clear and thorough. Nurses need to be sure to communicate to patients and families that making a choice for hospice doesn't mean giving up or choosing death; rather, they're selecting comfort care that can improve quality of life. Beginning discussions early about the numerous resources available allows for communication to take place in a calmer environment when patients and families can explore all potential options. An ongoing conversation allows patients and families time to process the information.
Nurses need to use expert communication and listening skills. They should be cognizant of their voice, body language, and actions to foster therapeutic communication, build rapport, and demonstrate empathy and caring. Honest information shared in a thoughtful and compassionate manner decreases false hopes and anxiety. Discussing all aspects of end-of-life care allows the patient and family the opportunity to communicate fears and needs, and allows the hospice team to provide appropriate care and support.
In some cases, communication with the patient to ascertain ongoing wishes and/or goals may not be possible due to the disease or illness, the sedating reactions of medications used to relieve discomfort, or other issues. In these situations, family members or friends can become the decision makers. Discussions should be open, honest, and respectful of what we know to be the patient's wishes and preferences. Family members should be encouraged to voice questions so that their concerns and fears are addressed. Conversations to ascertain patient and family wishes, which are always an important part of providing patient-centered care, become crucial in providing good end-of-life care.
Initiating hospice care requires a change in the healthcare providers with whom the patient may have developed long and trusting relationships. Providers who refer patients to hospice will need to develop relationships with the new care team. Communication between the referring healthcare provider and hospice providers is imperative to promote a seamless transfer of care.
A thorough history, treatment, and prognosis will allow the hospice team to begin planning appropriate care for the patient and family. Generally, the nurse practices as a case manager for the interdisciplinary team. Clear, thorough, and consistent communication between all members of the interdisciplinary team is crucial to ensure that patient and family needs are addressed.
Compassionate caring and comfort
Often, patients and families may find it difficult to accept that the focus of care is changing from curative to comfort. As hospice nurses, it's vital to develop a trusting relationship with patients and family members. Nurses must provide compassionate caring demonstrated through empathy, sympathetic awareness of the patient's and family's suffering with a sincere desire to assuage it, respect, and a nonjudgmental acceptance of the patient's and family's wishes.
Caring is often revealed in a change of the nurse's focus from “doing” to “being.” This requires nurses to reflect on their own beliefs and values surrounding death and dying. Through self-reflection on their own values, nurses can become more comfortable with personal feelings about death and dying. Often the nurse's presence or listening to the patient or family is sufficient to decrease anxiety.
Compassionate caring and comfort in hospice concentrates on holistic care, including symptom management. Some of the most frequent symptoms that must be addressed are pain, dyspnea, anxiety, nausea and vomiting, constipation, and terminal restlessness (see Symptom management in hospice care). Good symptom management requires collaboration among all members of the interdisciplinary team.
An astute nursing assessment begins with active listening to build trust in the nurse-patient relationship. Actively searching for additional symptoms can often lead to new discoveries that the patient may not feel comfortable talking about or attributes to the progression of the illness or disease. Determining the patient's and/or family member's meaning of the symptom is an important step in beginning symptom management.
The nurse's physical assessment is imperative to gather data; however, it also indicates caring to the patient. A physical assessment of the patient's concern can indicate to him or her that this new symptom is as important to the nurse as to the patient and that the nurse is there to provide the care the patient needs. After ascertaining the etiology of the symptom, rapid interventions or aggressive management are keys in hospice care. Evaluation of the patient's response informs the nurse if interventions are effective or whether additional interventions are necessary. Often, pharmacologic interventions are enhanced with nonpharmacologic and complementary therapies.
Assessing patient and family wishes regarding cultural, ethnic, and/or religious rituals early in the patient's care is essential in providing appropriate care. Fostering continued open communication that's sensitive to the patient's or family's values, cultural customs, and rituals allows care to be tailored to meet individual needs. Culture and ethnicity determine how patients and families view end-of-life care, and how individuals make decisions regarding care, advance directives, and pain and symptom management, as well as the environment where they want to experience the final days of their life.
Patients in some cultures may choose to have a family member hear the news of a terminal diagnosis and not burden themselves with the diagnosis or decision making regarding end-of-life issues. Typically, Western cultures value autonomy and individualism, with patients making their own decisions based on science and quality of life. However, other cultures may have a more hierarchical approach and, therefore, patients may look to an authority figure or the physician to make decisions. Still other cultures value interdependence and harmony, with patients looking to family members to make decisions for them. Some cultures make decisions based on what's best for the community.
It's important to consider how a patient's culture influences his or her beliefs and/or values. For example, when identifying the cause of illness or pain, some cultures believe that it's necessary for the individual to experience the pain and/or suffering to be cleansed or redeemed. Culture also impacts how individuals express physical, emotional, and/or spiritual pain. It's important to be able to discern the causes of pain to adequately treat the patient.
Minorities are severely underrepresented in hospice care. The disparities may be due to multiple factors, such as lack of understanding, trust, referrals, or finances. In addition to cultural differences, language barriers, spiritual beliefs, limited education, and location may impede access to hospice services. Some family members want to be actively involved in the patient's care, whereas others may find it too difficult. Integrating family wishes regarding rituals before and after death demonstrates sensitivity and respect.
End-of-life ethical and legal aspects
In order to assist patients and families in making end-of-life decisions, nurses need to self-reflect on their own beliefs regarding hospice care and the dying process. Nurses need to be willing to listen to patients and families regarding issues surrounding end-of-life care, including advance directives and living wills. Nurses also need to be able to assure patients and families that making choices to not perform heroic measures or allowing a natural or peaceful death doesn't mean the patient won't receive care.
By completing advance directives, the patient can inform a healthcare provider of his or her wishes in the event that the patient is unable to provide direction or guidance. Patients can also appoint a healthcare durable power of attorney to make these important and difficult decisions. In the event a patient doesn't have advance directives or a power of attorney appointed, the patient's requests can still be honored. Nurses can encourage conversations between patients and family members or friends. If a patient has no advance directives, family and/or friends may be asked to speak for the patient. If no spokesperson can be identified, an ethics committee may be used to aid in decision making.
For patients and families to make informed decisions, nurses need to educate them regarding their options. As in all education, the first step is to assess the patient's and family's readiness to learn. Optimally, the conversation will take place in a manner respectful of the patient's culture and beliefs before actual decisions need to be made. This allows the patient time to process feelings and ask further questions. Educating about the choices in end-of-life care requires the nurse to explain concepts such as CPR, ventilator support, feeding tubes, and pain and/or symptom management, as well as the natural dying process.
Decisions affecting end-of-life care can be difficult for patients, families, and healthcare providers. Ethical principles of autonomy, beneficence, and nonmaleficence should guide nursing practice. Autonomy dictates that patients have the right to self-determination—to decide what care and/or interventions they want or don't want. If a competent dying patient requests to stop medications or treatment, healthcare providers are obligated to comply with the patient's decision.
The principles of beneficence and nonmaleficence go hand-in-hand. Beneficence in nursing is compassion and doing good—the basic principle for patient advocacy. Nonmaleficence means to do no harm. In hospice care, nurses must advocate for the patient's desires or requests if possible. Nurses can't advocate for patient wishes that seem unethical or illegal, such as hastening a patient's death. In this situation, a nurse should respond therapeutically, attempt to gain understanding of the patient's concerns and rationales for the request, offer reassurance, discuss symptom management (if applicable), and make referrals to other members of the interdisciplinary team as needed.
An interdisciplinary approach
Let's go back to the beginning with our patient Ms. A. How should you respond to her when she asks, “Why hospice? I thought people go to a hospice when they're dying?”
Use the following mnemonic to help guide your discussion:
- H—Hospice means hope. Although there may not be a cure for the disease, hope can take on a new meaning. Perhaps a patient can hope for a day without pain or to take a long-awaited trip. Perhaps a patient is hoping to live long enough to see a new grandchild born or a child attend the first day of elementary school.
- O—Hospice provides options. Just like patients are given options to have surgery or undergo chemotherapy or radiation treatments, hospice provides the option of care and comfort measures while maintaining and, hopefully, enhancing a patient's quality of life.
- S—Hospice provides support. Support can be found through the various members of the interdisciplinary team. Patients can help identify a network of family members and friends who can provide support and reassurance throughout the hospice experience.
- P—Hospice provides peace. Families can achieve peace in knowing that the patient can choose the care he or she wants to receive. The patient can achieve peace in saying “I don't have to fight any longer if I want to stop.” Spiritual and/or religious personnel may assist in providing patients with a sense of peace or calm during the hospice process.
- I—Hospice care is individualized. Just like no two people are alike, no two hospice plans are similar. Hospice care is unique and tailored to fit the individual and his or her family members.
- C—Hospice care is compassionate. Holistic comfort care involves looking at all aspects of the patient. Whether it involves active symptom management or listening to a story over a cup of hot tea, hospice nurses provide comfort in a culturally sensitive environment.
- E—Hospice involves helping patients make personal end-of-life care decisions. Although these decisions can be difficult, the choices allow the patient to state, “This is how I want to live my remaining time.”
As Ms. A's nurse, you can help her transition from a curative plan to a care and comfort model. Be present, actively listen, and let her know that she can begin her hospice journey with you.
did you know?
According to the NHPCO, the early definition of the term hospice was a place of shelter when one was fatigued from traveling or ailing. In 1963, Dame Cicely Saunders lectured at Yale University and introduced the concept of hospice care as it's known today. She founded the first hospice to care for dying patients in the United Kingdom, St. Christopher's Hospice, in 1967. The first hospice in the United States, Connecticut Hospice, was founded in 1974 by a small group of individuals, including Florence Wald, the former dean of the Yale University School of Nursing.
- Communicate with the physician if a patient is appropriate for hospice and hasn't been referred.
- Assess the patient's/family's wishes; values and goals; assistance with activities of daily living, durable medical equipment, medications, and respite care; and readiness to learn.
- Collaborate with various members of the interdisciplinary team to provide physical, psychosocial, emotional, spiritual, and financial support. Make appropriate referrals, as needed.
- Perform comprehensive baseline and ongoing assessments for physical and psychological symptoms; living environment; cultural and spiritual values, practices, and concerns; advance directives; and end-of-life preferences.
- Educate the patient and family regarding options, services, and respite care; good skin care; pain and symptom management; and pharmacologic, nonpharmacologic, and alternative/complementary therapies.
- Be present and provide support.
Symptom management in hospice care
Nurses should always appropriately manage pain; however, at the end of life, it's imperative to manage pain aggressively. The goal is to prevent and relieve discomfort while taking into consideration the patient's wishes. Some patients will prefer to forego opioids or a higher dosage of opioids to be more alert to enjoy final days or hours with loved ones. Other patients prefer that pain be relieved at all costs. Often, at the end of life, the patient may not be able to adequately express pain. The astute nurse must use all of his or her assessment skills and should enlist the aid of family members who know the patient best to identify indicators of pain.
Although there are numerous medications that can be given for pain management, morphine is often considered the gold standard. The nurse should initiate consultations with the physician and pharmacy to ensure maximum patient comfort. Patients or families may raise concerns that increasing opioid dosages may lead to significant sedation and respiratory depression, appearing to hasten death. Support and education need to be provided to minimize their fears and concerns.
Dyspnea (breathlessness or “air hunger”) is a common symptom experienced by hospice patients. The first step that the nurse needs to complete is an assessment to determine the cause of dyspnea. Oxygen is rarely effective if the dyspnea is chronic; however, it may be used for patient comfort. Often, dyspnea is the result of anxiety, which can be managed with reassurance, breathing exercises, relaxation techniques, and medication. Reassuring the patient that he or she won't be left alone is often helpful. A humidifier and/or electric fan near the patient may also add comfort and decrease the feeling of breathlessness.
Terminal bubbling, sometimes referred to as “death rattle,” is usually the result of the patient's inability to clear secretions. Because most patients have decreased awareness at this point, this may be disturbing to the family. Although suctioning may provide temporary relief, it's often uncomfortable for the patient. Therefore, it isn't used on a regular basis. An anticholinergic, such as a scopolamine patch, may be initiated to provide relief.
Anxiety is frequently experienced by hospice patients and families. Determining the reason why the patient is experiencing anxiety may guide interventions. Often, patients experience anxiety related to fears about who'll care for a surviving spouse or children, financial concerns, or spiritual distress. Providing opportunities for patients to talk to a skilled and sympathetic nurse in a caring, supportive, quiet environment is the best first-line action. Asking patients to name what they fear most and talking with them may help them analyze fears and decrease anxiety. Patients often feel anxious if they're in a new situation, such as a new long-term care facility or a hospice facility. Having family members stay with patients may help allay fears.
Nonpharmacologic measures may assist with reducing anxiety. Relaxation therapy may decrease anxiety, as well as pain and dyspnea. It should be performed in a quiet environment and on a regular basis to achieve the best results. Often, the use of aromatherapy through candles, diffusers, or bath or massage oils can stimulate powerful memories, which can enhance relaxation exercises. Breathing exercises and progressive muscle relaxation, as well as massage, can also aid relaxation. Meditation can decrease arousal of the mind, promote relaxation, and decrease anxiety. Hypnosis, spiritual healing, biofeedback, and music and art therapy are all helpful in promoting relaxation; however, they usually require assistance from a trained counselor or therapist.
Some hospice patients require medication to assist with anxiety. Guidance from the pharmacist and orders from the physician will allow nurses to administer medications to relieve this potentially distressing symptom.
Nausea and vomiting
Nausea and vomiting are common complaints and may be the result of many factors. Medications, such as opioids, nonsteroidal anti-inflammatory drugs, and antibiotics, can cause nausea. Anxiety, gastric irritation, constipation and intestinal obstruction, infections, hypercalcemia, and brain metastasis may also cause nausea. A thorough assessment and physical exam will lead the nurse to possible causes and indicate the best course of action. Sometimes patients need to change or add a medication to decrease the symptoms of nausea and vomiting. For some patients, the symptoms are tolerable because another symptom (such as pain) has been relieved.
Nurses may need to adjust medication schedules, administering medications either before or after eating. This simple adjustment may decrease or eliminate nausea and vomiting as long as the patient is taking oral food and liquids. In some cases, patients may require more than one antiemetic to help ease the symptoms. In addition to the medication, the route of administration must also be considered. If a patient experiences nausea and vomiting, oral absorption of any medication may be decreased. Therefore, other routes must be considered.
Constipation is one of the biggest problems for hospice patients. In addition to discomfort, constipation can result in increased nausea and vomiting, anorexia, and potential bowel obstruction. Constipation may be the result of many factors, such as medications, decreased fiber, dehydration, immobility, and depression. Therefore, a complaint of constipation requires a thorough assessment. Ask questions such as: How often do you have bowel movements? When was your last bowel movement? Was it hard or soft? Was it normal in color and amount? Do you use laxatives or suppositories? Have you used laxatives in the past? If so, what has been effective? Careful assessment of the abdomen for bowel sounds, distension, tenderness, or palpable masses is necessary.
If a patient is starting opioid therapy, laxatives should be initiated at the same time. As a general rule, patients should have a bowel movement at least every 3 days. If there has been no bowel movement, a rectal exam should be performed and suppositories or an enema considered. If the rectal exam reveals impaction, the stool needs to be removed. The patient should be medicated before disimpaction because this intervention can increase patient discomfort.
Often, patients nearing death experience significant agitation and restlessness. This phenomenon, sometimes referred to as “terminal agitation,” can be very distressing for family members to witness. Patients who are too weak to turn themselves in bed may try to get up and walk. Other symptoms include anxiety, extreme agitation, mood changes, hallucinations, and verbal outbursts. The nurse should complete a thorough assessment, including physical, emotional, and spiritual aspects. Any potentially treatable issues should be addressed, such as pain, dehydration, urinary retention, constipation, and fear/anxiety. Provide a quiet and calm environment. Encourage the family to be present and offer reassurance that the patient is safe. Educate the family that the symptoms being observed are a result of the illness. Medications such as lorazepam may help decrease the patient's restlessness or agitation.
When discussing hospice care with your patient, think HOSPICE.