Debra E. Heidrich
“How people die remains in the memories of those who live on.”
Dame Cicely Saunders
As diseases progress and death nears, the focus, goals, and rhythm of care change. A decline in physical functioning is often the first indication that a patient is entering the terminal phase of life (Gauthier, 2005). Functional decline usually occurs 4 to 5 months before death in persons with malignant diseases and approximately 3 to 4 months before death in persons with organ failure. Frail persons in long-term care settings tend to have a slow decline in function over the last 12 months of life (Lunney, Lynn, Foley et al., 2003). As physical function declines, the number of medical disciplines directly providing care to the patient often decreases as the individual becomes too weak for an office or clinic visit. And, the number of informal caregivers (i.e., family and friends) increases as the patient becomes increasingly dependent on others for care. The physical and emotional demands of caring for a loved one at end-of-life can be overwhelming. It is during this time that patients and family members need the expertise and support of a palliative or hospice care program.
At the time patients and families need consistency, follow-through, and a feeling of connection, they may—and rightly so—feel increasingly distant from the relationships with their health care providers. It is during this time that the advanced practice nurse (APN) can provide valuable continuity by facilitating home care resources and by providing consultation and support via telephone contact and/or home care visitations.
The terminal phase is not simply a continuation of the previous care (Furst & Doyle, 2003). Symptoms often change at end-of-life. Disease-specific symptoms may intensify (e.g., dyspnea in pulmonary malignancy), others subside, and new symptoms may appear. The prevalence of symptoms at end-of-life as reported in the literature varies with the study setting, patient population, data collection tool, and timing of data collection in relation to patients’ deaths (Table 3-1).
| —, Not reported in the study | ||||||||||||||
| Symptoms (%) | ||||||||||||||
| Author | Setting/Population | No. of Subjects | Anxiety or Worry | Anorexia | Constipation | Concentration Difficulties | Confusion/Delirium | Depression/Feeling Sad | Drowsy | Mouth Dry | Dyspnea | Fatigue/Lack of Energy | Nausea and Vomiting | Pain |
| Klinkenberg, Willems, van der Wal, et al., 2004 | After-death survey of relatives of older adults | 270 | 31 | — | — | — | 36 | 28 | — | — | 50 | 83 | 25 | 48 |
| Kutner, Kassner, & Nowels, 2001 | Hospice staff from 16 hospices rating of patient symptoms | 348 | 43 | 63 | 39 | 60 | — | 51 | 61 | 34 | 48 | 83 | 24 | 76 |
| Tranmer, Heyland, Dudgear, et al., 2003 | Interviews of hospitalized patients near end-of-life | 135 | 70 | 52 | 39 | 44 | — | 53 | 70 | 81 | 62 | 84 | 44 | 63 |
| Nausea | ||||||||||||||
| 25 | ||||||||||||||
| Vomiting | ||||||||||||||
| Hickman, Tilden, & Tolle, 2001 | Family members of persons who died in a hospital | 103 | 26 | 53 | 30 | — | — | 43 | 59 | 60 | 65 | 67 | — | 59 |
| Hall, Schroder, & Weaver, 2002 | Chart audit noting symptoms in last 48 hours of life in long-term care settings | 185 | — | — | — | — | 29 | — | — | — | 62 | — | — | 44 |
Mercadante, Casuccio, and Fulfaro (2000) evaluated 370 home-based patients with advanced cancer and showed that the peak of opioid consumption, symptom frequency, and symptom severity correlated with poor functional status. Symptoms of nausea, vomiting, dry mouth, gastric pyrosis (heartburn), and diarrhea decreased as performance status declined, whereas dyspnea, drowsiness, weakness, and confusion tended to increase and to peak at the lowest levels of functional status.
In another study, Klinkenberg, Willems, van der Wal et al. (2004) identify seven symptoms most often reported in the literature at end-of-life: fatigue, pain, dyspnea, depression, anxiety, confusion, and nausea and/or vomiting. Family caregivers were queried to identify the presence of these symptoms during the last week of their loved ones’ lives and to rate the frequency, severity, and burden associated with each symptom experienced by their loved ones. Seventy-five percent of patients had two or more of these symptoms in the final week of life (range = 0 to 7; mean, 2.7). All seven symptoms were perceived by caregivers as burdensome to patients, with fatigue being the most burdensome, followed by pain, anxiety, dyspnea, depression, nausea/vomiting, and confusion. While studies of this nature are often difficult to generalize across settings and populations, it is clear that patients at end-of-life are at risk and experience multiple symptoms that create significant burdens and interfere with quality of life.
Although psychosocial symptoms are common in the dying patient, they are often not adequately evaluated or managed (Georges, Onwuteaka-Philipsen, van der Heide et al., 2005). Depression and anxiety (or anxiety-related symptoms such as nervousness, worry, or irritability) are included in most studies of symptom prevalence. The issues of loss, grief, isolation, sexual dysfunction, disturbed self-concept, spiritual distress, loneliness, and concerns about caregiver burden are less often assessed, yet these issues are no less important than physical symptoms. Georges et al. (2005) noted that a peaceful death is impeded by feelings of anxiety and loneliness.
Seriously ill patients queried about the importance of selected attributes to quality end-of-life care identified the following as the five most important concepts (Steinhauser, Christakis, Clipp et al., 2000):
▪ Freedom from pain
▪ Being at peace with God
▪ Presence of family
▪ Being cognitively aware
▪ Having treatment choices honored
Providing multidimensional care is essential at the end of life—including optimal physical care (e.g., pain relief), spiritual care, psychosocial care, and ongoing communication regarding advance care planning. Patients and families who were asked to identify the most important aspects of a physician’s skills when providing end-of-life care identified emotional support more often than medical competence (Wenrich, Curtis, Ambrozy et al., 2003).
Careful evaluation of all symptoms is necessary throughout the course of a patient’s care, including the last days and hours of life. Ideally, interventions are aimed at addressing and relieving the underlying cause rather than treating the outward symptom. For example, restlessness related to the discomfort from urinary retention is best relieved with catheterization rather than the introduction of a benzodiazepine. The underlying cause is not always readily identifiable or treatable; in these circumstances, interventions are directed to lessen the uncomfortable symptom.
The APN is in an ideal position to anticipate, evaluate, and monitor for physical and psychosocial symptoms. Providing the patient and family with the appropriate education about what to expect based on the disease process can reduce the anxiety and fear that often accompany “not knowing.” For example, dyspnea, respiratory secretions, cough, and pain are expected symptoms in the patient with metastatic lung cancer. Teaching the patient and family what to expect and how to address these symptoms when they do occur makes it less likely that these events will be perceived as “crises.”
It is important to realize that each situation is unique and that the patient and family often ascribe meaning to their experiences based on their own perspectives. For each patient and family, psychological, spiritual, cultural, and family issues converge and contribute to the end-of-life experience, no two of which are alike.
With few exceptions, the health care team has only one chance to “get it right” when caring for patients and families at end-of-life (Berry & Griffie, 2005). Excellent palliative care received in the months prior to death is not remembered if physical and psychosocial symptoms are not optimally addressed in the dying process (Furst & Doyle, 2003). This point was emphasized by Dame Cicely Saunders when she stated, “How people die remains in the memories of those who live on.”
CARE AT END-OF-LIFE
Patients nearing death are often weak, fragile, and less tolerant of physical and psychosocial stress. It is during this time that palliative interventions intensify and the focus on restorative care decreases. The goals of care are to prevent and appropriately manage symptoms and to support quality of living throughout the dying process.
Medications
During the dying process, the APN should evaluate all medications that the patient is taking and consider discontinuing medications that are not required to promote comfort (Ellershaw & Ward, 2005). The clinician must discuss with the patient and family why specific medications are no longer necessary. Without an appropriate explanation, the discontinuation of medications may appear to the patient or family as a death-hastening intervention. Medications such as antihypertensives, antidepressants, laxatives, antiulcer drugs, anticoagulants, long-term antibiotics, iron preparations, and vitamin supplements that are no longer essential may be discontinued. Medications such as steroids, replacement hormones, hypoglycemics, diuretics, antiarrhythmics, and anticonvulsants should be evaluated for efficacy and usefulness in the management of the disease and symptoms; those that are no longer beneficial for patient comfort may be discontinued (Furst & Doyle, 2003). It is important for the APN to understand how to successfully taper certain medications (e.g., antidepressants, steroids, hormones, benzodiazepines, and anticonvulsants) to avoid the discomforts associated with abrupt withdrawal.
Some patients are able to swallow until a few hours before they die, whereas others are unable to swallow for weeks or days before death occurs. Alternate routes of administering medications, including sublingual, buccal, rectal, subcutaneous, and intravenous, may be considered. Some individuals consider certain routes objectionable (e.g., rectal, subcutaneous). Discussing these various routes with the patient and family and assessing their willingness and ability to use these routes are important considerations when planning care.
Dehydration
Patients should be encouraged to maintain oral fluid intake for as long as possible. As death approaches, however, patients are often unable to take in adequate fluid by mouth. There is considerable debate regarding the use of nonoral hydration at the end of life and no consensus on the single best approach to care (Fainsinger, 2005). It is essential for the APN to assess the potential risks and benefits of artificial hydration while aiming to maintain comfort, prevent complications, and avoid unnecessary or distressing procedures (see Chapter 23). Key considerations when determining the role of nonoral hydration include the following (Fainsinger, 2005):
▪ Expressed wishes of the patient or surrogate decision-maker regarding the use of hydration
▪ Patient-defined goals that can be influenced by hydration
▪ Symptom burden that may be improved by withholding hydration (e.g., fluid overload) or providing hydration (e.g., delirium)
▪ Burden to patient and caregivers of maintaining nonoral hydration
▪ Family distress concerning withholding hydration/nutrition
When in doubt, a time-limited trial of nonoral hydration while vigilantly monitoring for improvement or uncomfortable effects is appropriate.
A dry mouth is not necessarily an indicator that the patient needs rehydration (Furst & Doyle, 2003). Patients should be encouraged to keep the mouth moist by sipping cold water, allowing ice chips to melt in the mouth, or eating sorbet (lemon flavoring is refreshing and stimulates saliva). As an alternative, water or normal saline (1 teaspoon of salt in a quart of water) can be sprayed into the mouth using a sprayer bottle or an atomizer. Artificial saliva preparations are available in liquids, sprays, and gels and can be applied to the oral mucosa. Water-soluble lubricants, such as KY Jelly or Surgilube, can be used to keep lips and gums moist. Careful evaluation of the oral mucosa is necessary to assess for lesions or signs of infection.
Signs and Symptoms of the Imminent Dying Process
With few exceptions, there are predictable signs and symptoms that signal that death is nearing. The clinician can use these symptoms as a guide to help the patient and family plan for the death and to clarify with family members their desires and needs at the time of death.
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