Jane, a nurse, receives a late-night phone call that Aunt Marge may not make it through the night. She hops in the car and drives 30 minutes to the local hospital where her favorite aunt was admitted. Her aunt has metastatic breast cancer. As Jane rushes to her bedside, Aunt Marge is barely conscious, yet she opens her glassy eyes and looks at Jane as if to thank her for coming. Jane realizes that she — a nurse who can effectively communicate in just about any situation — is now at a loss for words.
John, a hospice patient, has just entered an inpatient nursing unit. Although he seems to be in his last moments, he’s having a conversation with his deceased mother. The family and nursing staff are baffled that he could be speaking to someone who has been dead for 30 years. That evening, he says his goodbyes to his family. When they say they will be back in the morning, he remarks, “I don’t think so.”
Jeanne is dying from an incurable glioblastoma, and her family has maintained a vigil at the bedside for the past three days. After their sleepless nights and many missed meals, the primary care nurse encourages the family to go down to the cafeteria to have something to eat. When they return, Jeanne is no longer breathing and has passed away. They are angry that they left the bedside and abandoned Jeanne during her last moments of life.
These scenes are common to the practice of most nurses. Caring for a patient approaching the end of life continues to challenge the most skilled, educated and talented practitioners. Nurses and other healthcare professionals can help people who are dying deal with their special needs and concerns, such as fear of abandonment, losing control over body functions and being overwhelmed with pain or distress.1
Nurses have an obligation to address these end-of-life issues with patients and families. As delineated in the 2001 Code of Ethics for Nurses,
identifying problems, providing and clarifying information and supporting decision-making to define and provide appropriate care are emphasized as fundamental to the practice of nursing.2
This becomes particularly important to help prevent or relieve pain and suffering and to support patients and families during this end-of-life transition. Through presence and listening, nurses uphold and fulfill this fundamental role of nursing — witnessing and responding to the unique needs of people at the end of life.3 (Level B)
Goals that guide care at the end of life focus on patients’ comfort by addressing physical, social, emotional, spiritual and financial pain4,5
while maintaining their dignity, identity and self-respect.6 (Level B)
Goals also extend to preserving the quality of life and providing support and grief counseling to family members, friends and caregivers. As those providing the most consistent, visible, hands-on care, nurses hold a unique place to influence the quality of end-of-life care for patients and families.4
Facilitating communication between patients, families and the healthcare team to elicit and honor a patient’s wishes allows clinicians to help clarify these goals of care.7 (Level B)
Several strategies that foster therapeutic communication have been identified: active listening, attention to physical environment, use of open-ended questions and rephrasing and timely provision of discussion.2
Clinicians can help achieve the ultimate objective in these situations — to create a setting that fosters a caring, sensitive, supportive environment for patients and families.
Physical Changes of Dying
No two deaths are alike. However, as patients approach the end of life, they share common problems as physiological systems decline and their bodies begin to shut down. In addition to pain, a number of symptoms are frequently associated with end of life, including dyspnea, anorexia, fatigue and delirium.8 Nurses
can help control physical pain and other distressing symptoms using the appropriate medications in sufficient quantities, delivered via the right route. Nurses also need to control adverse effects of nausea and vomiting, constipation or diarrhea that often accompany the same therapeutic agents that bring relief. (The most up-to-date information is available at websites like www.pain.com, http://journals.lww.com/ajnonline/pages/default.aspx, www.nhpco.org, and www.nationalconsensusproject.org).
Clinicians must be aware of physical changes the body goes through, assess changes and respond appropriately throughout the dying process. Physical pain is one component of the dying process that can be quite difficult to manage due to the frequent absence of verbal or physiologic prompts.9 (Level B)
To effectively assess pain
, especially for those who are cognitively impaired, nurses and other healthcare professionals must attempt to elicit a patient’s own verbal descriptions of pain, but are encouraged to augment communication with written words, pictures and other measurement tools.10
However, many times, patients are unable to relay specific details about distressing symptoms, and picking up on nonverbal cues is essential. Restlessness, a furrowed brow, moaning or guarding may all be indicative of physical discomfort.9
Although other interventions may be used to augment the effectiveness of pain medications, the use of analgesics is the cornerstone to good pain management during the end-of-life transition. The use of opiates (such as morphine, hydromorphone, methadone or fentanyl) as well as adjunct medications (such as gabapentin or nonsteroidal anti-inflammatory drugs [NSAIDs]) must be assessed and titrated throughout this time to offer optimal pain control. In some cases, pain becomes intractable despite the efforts of the healthcare team. In these cases, high doses of medications to sedate a patient may be used to ensure the patient’s comfort as death approaches.11,12
An often distressing problem patients face as they approach the end of life is a decline in their appetite and thirst. Because eating is such an important activity of life, and an ingrained social activity, patients’ inability or lack of will to eat often makes those around them uncomfortable.13 Nevertheless, patients should not be made to feel guilty for not wanting to eat or drink. To help alleviate the anxiety surrounding this issue, clinicians must educate families to help them understand this natural progression and empower them to care for their loved one in other ways.14 For example, they can relieve dry mouth with good oral hygiene, humidified air, hard candies and artificial saliva. Small ice chips, glycerin swabs and lip balm on the lips or a moist cloth for the forehead may also keep patients comfortable.
As people near death, other physical changes take place. Peripheral circulation decreases and changes in body temperature occur, which may cause a patient to perspire or feel clammy. Skin color may also change and patients may appear pale or mottled with a blue or red hue. Interventions such as the use of antipyretics (acetaminophen), ice or blankets to address temperature are generally ineffective for these issues. Keeping family and friends apprised of these changes and explaining what they are seeing will help them be more comfortable with these transformations.8
Throughout the dying process, patients may become agitated or delirious for a variety of reasons. Dehydration follows a decrease in food and fluids, causing changes in mental status that can include hallucinations or restlessness. A decline in renal function may also contribute to these events. Patients may attempt to get out of bed, disrobe or babble incoherently. These can be extremely distressing manifestations for patients to experience and families to witness.15 The use of medications such as lorazepam (Ativan), haloperidol (Haldol), or quetiapine (Seroquel) are extremely useful and appropriate in these situations, and obviate the need for restraining or combating patients’ movements. In addition, nonpharmacologic approaches may also be effective: dim lighting, soft music, repositioning or a fan blowing cool air may help quell a person’s restlessness.
Changes in respiration are also seen at the end of life as the cardiovascular and respiratory systems decline.15 Patients may have Cheyne-Stokes respirations, a breathing pattern punctuated by periods of apnea. They may have a death rattle — breathing that resembles snoring — the result of congestion, excess fluid intake and poor expectoration.16 Abnormal breathing patterns may be less upsetting to family members if they know their etiology and understand them as a natural consequence of dying.
Uncontrolled respiratory symptoms may result in a patient appearing panicked or breathless. Some measures can be taken to help patients with breathing. For example, scopolamine or hyoscyamine (Levsin) can reduce secretions. Suctioning, however, should be avoided, because it’s uncomfortable for patients and may only increase secretions. Turning patients on their sides or elevating their heads may also ease breathing.16 Air hunger during the dying process does not generally respond to oxygen; however, the use of oxygen for general comfort may or may not be employed in response to patient or family requests. Morphine or other opiates and anxiolytics are commonly used to manage shortness of breath during this period.17 Clinicians may be reluctant to give opioids and anxiolytics that may be respiratory depressants, but with experience can learn to effectively titrate these medications to slow rapid breathing, counter panic and improve comfort.17
As the dying process continues, patients generally become less alert and communicative, and they may spend more time sleeping. However, healthcare professionals, family and friends should continue to talk to patients in normal, natural tones, as hearing is believed to be the last sense lost.15 Although unable to respond, dying patients may hear what is being said. Muscle weakness develops, and the ability to swallow or even perform simple movements diminishes. Withdrawal from social interaction and a decrease in responsiveness can also be quite distressing to loved ones. Clinicians must assure those at the bedside that this, too, is a natural part of the dying process, and not a sign of depression or rejection.15
Effective symptom management can present as a challenge for healthcare professionals, and can often result in symptoms being underdiagnosed or undertreated.18
They are in a pivotal position to be sensitive to the issues that arise, and impact how these distressing symptoms are addressed. Education about this component of end-of-life care will enable clinicians to have the confidence to adequately handle such issues.19
In addition, studies have cited other factors that act as barriers to successful symptom management and quality end-of-life care for hospice patients. These barriers include lack of family acceptance or understanding of their loved one’s needs, organizational or time restraints and lack of information with regard to symptom management or available resources.20 (Level B)