Principles of Ambulatory Medicine, 7th Edition

Chapter 13

Care at the End of Life

Grace A. Cordts

Thomas E. Finucane

Clare H. Ferrigno

“Hope does not lie in a way out, but in a way through.”

--Robert Frost

Caring for patients and their families at the end of life is an important role for health care practitioners. The majority of patients are dying from a pre-existing chronic illness like heart disease, cancer, cerebral vascular disease, chronic lung disease, dementia, and chronic liver disease. Many will face repetitive exacerbations of illness and will have to make difficult decisions about treatment options. When patients are diagnosed with a life-threatening illness, they enter an unknown, often scary, world that can be difficult to navigate. Primary care providers have a unique opportunity to accompany patients and families through the process of diagnosis, prognosis, treatment, and eventually death. Facing these challenges can be an opportunity for personal growth for some patients. Practitioners who accompany patients and families through this journey have an opportunity for personal and professional satisfaction (1). Practitioners should have skills in communication and symptom management. This chapter discusses advance-care planning; communicating with patients who have an eventually fatal illness and their families; hospice; the management of grief; and symptom management.

Who is Dying?

Most patients die of the exacerbation of a chronic illness. It is usually impossible to give a precise estimate of when death will occur. Two studies from the Study to Understand Patient Preferences for Outcomes and Risks of Treatment (SUPPORT) outline the difficulty (2,3). One study looked at patients with heart, lung, or liver failure who survived to hospital discharge. The study used a variety of models to identify who would meet the hospice criteria for an expected survival of 6 months or less. In the model with the strictest criteria, <1% of patients were identified as terminal. In the end, more than half of these terminal patients were still alive at 6 months. Using the most lenient criteria, 70% of the patients identified as terminal were still alive at 6 months and 58% of patients who were not identified as terminal had died in that interval. These authors concluded that most of these chronically ill patients “never experience a time during which they are clearly dying of their disease” (2).

A second study reviewed 1,976 patients who died in the hospital during SUPPORT and for whom sophisticated estimates of likelihood of survival had been made in the days before death. For patients dying of heart failure, the average chance of living 6 more months, calculated 3 days before death, was 60%. Two days before dying of chronic obstructive pulmonary disease, the corresponding figure was 50% (3). Lubitz and Riley (4) found that of the most expensive 1% of Medicare patients in a given year, half die and half survive. It is the inability to identify those who are “dying” that leads to at least some of the lavish spending on patients in their last year of life.

When treatments for advanced disease are studied, fully characterized patients expectably have unpredictable courses to death. In a beta-blocker trial of patients with advanced heart failure, for example, 33% of patients on placebo and 30% of patients on bucindolol died during a mean follow-up of 2 years (5). Of patients with non–small-cell lung cancer that was completely resected, 69% were alive at 5 years if treated with vinorelbine and cisplatin compared to 54% who were treated by observation alone (6). Outcomes like these are so familiar that we forget one underlying truth on which they are based: we simply do not know who is going to die soon.

Glossary of Terms

Several concepts and terms are used very imprecisely in discussions about care at the end of life. As just discussed,

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a central ambiguity arises in the use of terms such as “terminal,” “end of life,” and “the dying process.”

  • Palliative care:The word “palliative” comes from a Latin word for “cloak” or “cover.” In general, it refers literally to treatments aimed mainly at the control of symptoms. The word has acquired an additional connotation, however, that treatments with curative intent are being forsaken. In this latter usage, morphine for a leg broken in football would not be palliative, whereas morphine for malignant fracture in a patient dying of cancer would be, particularly if disease-specific treatment was being withheld.
  • Hospice:“Hospice” refers both to a philosophy of care and to a Medicare benefit. In the former sense, patients are said to receive hospice treatment when the goals of treatment have become palliative rather than curative. The Medicare hospice benefit (see sectionHospice Care), is a well-defined formal program.
  • Surrogate, proxy, and substitute:Gravely ill patients often lose the ability to make complex medical decisions for themselves. These decisions must then be made by others. A substitute may make decisions because the patient had designated him or her at an earlier time. If the incapacitated patient has not designated a substitute, a substitute must be identified by default. The default decision maker is usually next of kin. What authority is given to substitute decision makers, and in what hierarchy the default substitutes will be put, and the differences in authority between default and designated substitutes varies greatly among states. States also vary widely in their nomenclature for substitute decision makers. In some states the designated substitute is called a proxy, and the default substitute is called a surrogate. In other states, the opposite is true; proxies are default substitutes and surrogates are those who have been designated. “Health care agent” and “durable power of attorney” are common usages, generally referring to a designated substitute. Other terms are used as well. Some authors use these terms quite loosely. Because of the variation in and ongoing changes in state laws, practitioners should become familiar with the relevant terms and laws for their locality.
  • Advance directives:This term generally refers to directives made by a capable patient to leave guidance about treatment in the future. Designating a health care agent is one way of doing this. The other way involves describing particular scenarios of illness and stating whether treatment should or should not be provided in each. The best-known example of this type of advance directive is the living will. The term is also occasionally used to refer to plans made by others on behalf of an already incapacitated person. Decisions made in advance of severe illness by family and staff on behalf of an incapacitated nursing home resident, for example, are sometimes called advance directives.

Advance Directives

The cornerstone task in establishing advance directives requires the patient to imagine two hypothetical circumstances. First, the patient imagines that he or she has become so ill that decisions about life-sustaining treatment have become necessary, and second, that he or she has become incapable of making these decisions. As stated above, the patient can address this hypothetical situation by naming a health care agent. Doing this is probably the optimal solution for many patients.

With the second type of advance directive, a patient may try to imagine particular scenarios and to specify what treatments should or should not be given. Living wills are examples of this type of advance directive. This type of advance directive is subject to extreme limitations in almost every state. In particular, they are ineffective by statute unless the patient has a qualifying condition. In Maryland for example, life-sustaining treatment may not be withheld on the basis of a living will unless the patient is either terminally ill or in a persistent vegetative state. Most other states have similar limitations. A few states have created categories where severe dementia serves as a qualifying condition, and the scenario-based document can be invoked. With a few exceptions (7), most studies show that many patients do not want to do living wills (8), and that when living wills are done, they have little effect on the subsequent process of care (9). Nonetheless, they are commonly included in discussions about improving care “at the end of life.”

Do not resuscitate (DNR) orders to withhold cardiopulmonary resuscitation (CPR) deserve special mention. Although they can be seen easily as scenario-based advance directives (“If I suffer cardiac arrest, I direct that CPR not be performed”), the laws in most states treat them as real-time decisions about a proposed course of treatment. A patient may refuse CPR just as she or he may refuse surgery or chemotherapy. If this were not so, and in-hospital do not resuscitate orders were treated as advance directives, their use would be restricted to patients with the requisite qualifying conditions.

A more difficult problem arises for patients who are outside the hospital, either at home or in a nursing home. Almost every state has specific legislation designed to guide emergency medical service providers in cases where a non-hospitalized patient wishes to decline CPR. Most states require a particular form to be completed, and many require an easily recognizable symbol, which indicates quickly and unambiguously to emergency medical service providers that CPR may be withheld in the emergency setting.

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In ambulatory practice, the most useful and effective form of advance directive is often the designation of a substitute decision maker. This person is broadly authorized in most states to make real-time decisions that balance burdens and benefits of treatment on behalf of a person who has become incapacitated, based on knowledge of what the patient would have wanted. This is called “substitute judgment.” Although living will-type advance directives are generally limited to certain qualifying conditions (see above), discussions about preferences may still be valuable. Family members, substitute decision makers, and the clinician may be able to develop a picture of the patient's values in balancing longer life versus lesser suffering. It is important to recognize, in discussing such advance directives, that cultural differences may exist (10, 11, 12).

Substitute Decision Making

In principle, substitute decision makers, whether designated or by default, should be guided by “substituted judgment.” The substitute should be trying to act as a conduit, to bring to the health care team what the patient would have said if that patient were still able to make decisions about the situation. The substitute should only use a “best interests” standard if there is no realistic way to understand what the patient would have wanted. In brief, the provider should ask: “What would he or she tell us to do for him or her?” (substituted judgment) in preference to “What do you think would be best for him or her?” (best interests). In practice, of course, complex judgments are often made on behalf of patients who arrive in circumstances that are beyond anything they ever could have imagined.

In many cases questions about life-sustaining treatment for incapacitated patients do not have “correct answers.” What is important is that the process for deciding is fair, well intentioned, and, ideally, consensual. Different states have evolved different techniques for resolving conflicts among substitute decision makers. The organization Caring Connections provides helpful information regarding living wills and other ways to protect the autonomy of a dying person (see http://www.caringinfo.org).

Communication

A recent study found that patients facing a terminal illness want a health care provider who will talk in an honest and straightforward way, give bad news in a sensitive way, be willing to talk about dying, listen, encourage questions, and be sensitive to when they are ready to talk about death (13).

End-of-life care requires skills in communication, decision making, and relationship building (14). Practitioners should be skilled in breaking bad news, clarifying goals of care, discussing prognosis, dealing with emotions of patients and families, and running family meetings. Effective communication in end-of-life care improves patients’ and families’ experiences of care and likely will enhance professional fulfillment (15).

TABLE 13.1 Seven-Step Approach to Communication

1. Prepare for the discussion

2. Establish what the patient (and family) knows

3. Determine how information is to be handled

4. Deliver the information

5. Respond to emotions

6. Establish goals for care and treatment priorities

7. Establish a plan

From von Gunten CF, Ferris FD, Emanuel LL. The patient–physician relationship. Ensuring competency in end-of-life care: communication and relational skills. JAMA 2000;284:3051, with permission.

There are several approaches published for communicating with patients and families with life-threatening illness. One representative approach, outlined by Von Gunten et al., is a seven-step approach for structuring communication of important information (14). It is based on Buckman's approach for delivering bad news (16). Table 13.1 outlines the seven steps.

Step one is preparing for the discussion. The practitioner must know the medical facts of the case, anticipate questions the patient and family might ask regarding prognosis, referral, and treatment, and have answers when possible. The physician may wish to consult with specialists prior to the encounter to obtain needed information. An appropriate environment should be established, quiet and comfortable, with adequate, uninterrupted time. Beepers should be given to someone else to answer. All of the appropriate people should be present, including family members and staff.

The second step involves determining what the patient and family know. Practitioners should use open-ended questions to establish the patient's and family's understanding of the medical situation. For example, you can ask, “What do you understand about your condition?” This is an important step to determine gaps in knowledge. It forms the basis for future discussions. It also prepares the practitioner to know where the discussion should start for step four.

Step three is to determine how your patient wants important information to be handled. Everyone has different ways of wanting information to be shared. Most people in the United States want to know the truth about their illness; especially if it is potentially fatal (14). The practitioner needs to accommodate to the norms of patients with different cultural heritages. In some cultures, for example, it is customary to communicate directly with the patient's family member rather than the patient. Some cultures

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observe strict gender or generation roles in making health-care decisions. In other cultures, such as traditional Navajo (12), it is important to present information in a positive, not negative, way. The giving and discussing of bad news should always be approached thoughtfully and be individualized to the needs of the patient. Practitioners should not assume that a patient's preferences for information will necessarily correspond to ethnic, cultural, or religious norms (17).

The information given in step four should be in a straightforward and sensitive manner. It is important not to use euphemisms (e.g., swelling, tumor, or lump) in the discussion. Frequent pauses are helpful to allow time for the patient to absorb the information. The practitioner should check frequently for understanding. Often patients do not hear the bad news when it is first delivered and must be told again over several interviews. It is often good to give a “warning shot,” for example, telling the patient that you have some bad news. This enables the patient to prepare to hear the news (15). Information should be given in small “chunks.” Medical information is hard to understand, and patients fail to understand up to 50% of information, even about simple procedures. Giving the information in small chunks, pausing, and checking for understanding helps patients and families process the information.

Step five is responding to emotions. Patients and families have a wide range of emotional reactions. Practitioners should acknowledge the patient's emotional response and ask followup questions to explore it. A useful mnemonic to recall techniques for managing a patient's emotional response is NURSE (Name, Understand, Respect, Support, and Explore) (15). Naming the emotion legitimizes it as a topic of discussion for the patient. Understanding the emotion conveys empathy to the patient. Respect and praise for a patient or caregiver helps establish an empathetic link with the practitioner. It also can diffuse defensiveness. When confronted with an angry patient or family member, telling family members that they are doing a great job in caring for the patient can sometimes dissipate the anger. Supporting the patient is essential in letting people know they are not alone, that you will be with them throughout the illness. Patients often make statements that require exploration. Using a simple response like “Tell me more” may help a patient reveal fears and concerns.

Establishing goals for care and treatment priorities is step six. There are two areas that need to be addressed. First is a general discussion of goals of care and what is important to the patient and family. These discussions form the basis for more specific recommendations for care by the practitioner. For instance, if a patient cannot think of a situation worse than death, the patient will choose aggressive care. On the other hand, if it is important for the patient to be at home with family, the patient may make other choices. Based on these general goals, specific discussions about DNR/CPR, mechanical ventilation, feeding tubes, antibiotics, or hemodialysis make sense.

Step seven is establishing a plan based on what was discussed in step six. The plan should include a followup meeting and how to get in touch for any further questions.

These seven steps give a general approach to communication in end-of-life care. They are not meant to be rigidly adhered to but used as guidelines. Steps six and seven may actually occur after a few days when the patient and family have adjusted to the information given in step four.

Initiating Discussions at the End of Life

Initiating discussions about the end of life are difficult. Quill outlines some representative questions for opening up the discussion (18) (Table 13.2). In many cases, these discussions occur as part of primary care and are fairly routine. At times, however, they are urgently indicated, for example, in patients with a rapidly deteriorating prognosis, patients with a passive or active wish for death, or patients where hospice or palliative care is being discussed (18).

Not all patients are going to want to have these discussions. Some will bring up these issues and others need a practitioner who can help them explore issues around the end of life. There is a dance between curing and caring. Initially, there is an emphasis on pursuing curative therapies and supportive care involves helping patients deal with the diagnosis and with side effects of treatment. As the disease progresses, there is a shift toward emphasis on supportive care and less emphasis on curing the disease. In fact, most of the diseases we deal with are not curable and treatments are aimed at managing symptoms and increasing life span. Eventually, some patients move to purely supportive therapy; and some will move into hospice. This process requires the practitioner to be skillful in helping patients navigate the transition.

Hospice Care

Hospice is a specialized program of care to improve the quality of life for people with a terminal diagnosis and their families by supporting them through the end of life. Prolongation of life is set aside to focus on interventions that improve the quality of life as decided by the patient and his or her family. In most communities, patients and their families can be cared for by their designated practitioner (primary care provider or specialist) in cooperation with hospice team members. The hospice team provides a multidisciplinary approach to provide pain and symptom management, through nursing services, psychosocial services, volunteer services, and pastoral care, together with the patient's designated practitioner. Services can be delivered in the patient's home, skilled nursing facility, hospital, or other hospice facility.

TABLE 13.2 Representative Questions for Initiating the Discussion about End-of-Life Issues

Domain

Representative Questions

Goals

Given the severity of your illness, what is most important for you to achieve?
How do you think about balancing quality of life with length of time in terms of your treatment?
What are your most important hopes?
What are your biggest fears?

Values

What makes life most worth living to you?
Would there be any circumstances under which you would find life not worth living?
What do you consider your quality of life to be like now?
Have you seen or been with someone who had a particularly good death or particularly difficult death?

Advance directives

If with future progression of your illness you are not able to speak for yourself, who would be best able to represent your views and values (health care proxy)?
Have your given any thought to what kinds of treatment you would want (and not want) if you become unable to speak for yourself in the future (living will)?

Do-not-resuscitate order

If you were to die suddenly, that is, you stopped breathing or your heart stopped, we could try to revive you by using cardiopulmonary resuscitation (CPR). Are you familiar with CPR? Have you given thought as to whether you would want it? Given the severity of your illness, CPR would, in all likelihood, be ineffective. I would recommend that you choose not to have it but that we continue all potentially effective treatments. What do you think?

Palliative care (pain and other symptoms)

Have you ever heard of hospice (palliative care)? What has been your experience with it?
Tell me about your pain. Can you rate it on a 10-point scale?
What is your breathing like when you feel at your best? How about when you are having trouble?

Palliative care (unfinished business)

If you were to die sooner rather than later, what would be left undone?
How is your family handing your illness? What are their reactions?
Has religion been an important part of your life? Are there any spiritual issues you are concerned about at this point?

From Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA 2000;284:2502, with permission.

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Since the introduction of the hospice movement and the founding of the first hospice in the United States in 1974, hospice programs have been developed in most communities, and most third-party payers now provide hospice benefits. Eligibility criteria for hospice benefits under Medicare are the following: the patient must be terminally ill with a life expectancy of 6 months or less, must be unable to benefit from or have refused further aggressive (curative) therapy for his or her terminal illness, must be able to receive most care at home, and must have a caregiver who will assume the responsibility for custodial care of the patient and be the decision-maker in the event the patient becomes incompetent to make decisions. Table 13.3 summarizes in detail the processes and services included in the Medicare Hospice Benefit.

Although involvement of the hospice team is ideal in terminal care, services are not available in all areas. In addition, some people continue to choose a mixture of palliative and aggressive interventions for their conditions that are not covered under the hospice philosophy or reimbursement parameters. In these instances, a practitioner who is willing to work with the patient and family, direct home care and community services, and focus on aggressive symptom management can still provide quality end-of-life care. Home health agencies can play a pivotal role in this care (see Chapter 9). Counseling services and support can be obtained for family members under their own insurance plans if they are having difficulty coping or develop complicated grief.

Many hospice patients die at home. All families need to know ahead of time what to do when the patient dies

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at home. If hospice is involved, the hospice team should be notified. In instances where hospice is not involved, the practitioner should be aware of the local jurisdictional laws on whether the police or only the funeral home need to be notified. Families should be instructed to make funeral arrangements ahead of time if they are able. If not, it is helpful if they at least contact their preferred funeral director. Information on hospice care in the United States is provided by both the National Hospice and Palliative Care Organization and the Hospice Association of America (see http://www.nhpco.org).

TABLE 13.3 Medicare Hospice Benefits

The Medicare hospice benefit is divided into benefit periods:
   An initial 90-day period
   A subsequent 90-day period
   An unlimited number of 60-day periods
The beneficiary must be recertified as terminally ill at the beginning of each benefit period. The following covered hospice services are provided as necessary to give palliative treatment for conditions related to the terminal illness: nursing care; services of a medical social worker, physician, counselor (including dietary, pastoral, and other), and home care aide and homemaker; short-term inpatient care (including both respite care and procedures necessary for pain control and acute and chronic system management); medical appliances and supplies, including drugs and biologics; physical and occupational therapies; and speech–language pathology services. Bereavement service for the family is provided for up to 13 months after the patient's death.

http://www.medicare.gov/publications/pubs/pdf/02154.pdf

Management of Grief

End-of-life care presents practitioners with three different aspects of grieving: grief of patients who have experienced a loss of a loved one; grief over losses that patients face when dying; and a practitioner's own grief reaction to the loss of a patient. This section addresses these three areas.

Bereavement research is beginning to help us understand the different reactions to loss and outline appropriate treatments. Even so, there are many questions still unanswered.

We do know there is a normal grief process that people go through adjusting to life without the person. Most people will adapt with only a minimal change in their daily lives lasting about 1 to 2 months (19). These people respond to support from friends and relatives. Health care providers can normalize the grief process for these patients. Some bereaved patients may need short-term medication for relief of anxiety and insomnia. A benzodiazepine or hypnotic (see Chapter 7) at bedtime if needed for sleep, or one of the anxiolytic benzodiazepines as needed for anxiety, should be considered for 1 to 2 weeks in the management of normal grief. Prolonged use of a benzodiazepine can interfere with the normal grief process. Many patients may be satisfied with an empathetic and supportive health care practitioner.

Abnormal grief reactions include bereavement-related depression and complicated grief reaction. It is important to distinguish complicated grief reaction, as it does not respond to interventions appropriate for major depression. Patients who meet Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) criteria for major depression may need short-term counseling and antidepressant medication (Chapter 24). Health care providers can engage the patient in short-term counseling or refer as appropriate. Individuals at high risk for complicated grief reaction are younger (<46 years of age), have a sudden or unexpected loss, are without social supports, have pre-existing psychopathology, are suffering from multiple losses, or have lost a child (20).

A complicated grief reaction is suggested when patients present with 6 months of symptoms such as searching for the deceased, loneliness, preoccupation with thoughts of the deceased, and feelings of disbelief, distrust, anger, shock, detachment from others, and expressing similar somatic symptoms of the deceased (21). These bereaved individuals have an increased rate of physical symptoms, doctor visits, use of medication, disability, use of alcohol, hospitalization, and mortality (22).

It is estimated that approximately 10% to 20% of persons will develop a complicated grief reaction (23). Efficacious bereavement treatment for complicated grief requires intervention specifically directed at complicated grief (23). Health care providers will need to refer patients with complicated grief to appropriate bereavement treatment.

Research in bereavement has clinical implications for health care practitioners. Practitioners should not automatically refer all family members for bereavement counseling. Practitioners are in a unique position to normalize the grieving process for families and identify persons who might be at high risk for developing a complicated grief reaction.

The second aspect of managing grief deals with a patient's grief over current and anticipated losses of health, the future, physical abilities, and roles and relationships (1). The dying person has grief and other issues to work through and should be given the opportunity to function at his or her highest level in order to do so. Spiritual support can be critically important for many during this time. It is important to determine religious or spiritual practices or preferences, if any, and involve others who can minister to the person's needs in these areas to enhance quality of life and meaning (24,25).

Complicated grieving on the part of the dying person is a challenge for any care provider. Anger, fear, and other cognitive–emotional–spiritual crises can show themselves in somatic complaints. Terminally ill patients can have various emotional reactions to death. Kubler-Ross's five-stage model is one construct to describe and understand the grieving process (26). The stages are denial, anger, bargaining, depression, and acceptance. Patients do not go through these stages sequentially nor do they necessarily go through all five stages. Patients fluctuate in their ability to handle grief—confronting then avoiding. Some will never accept the situation and some seem to embrace their death. For the most part, people oscillate between acceptance and denial. The patient's grief should be acknowledged and expressed. It is best if patients are helped to express their grief of losses early in the disease. This helps patients cope more effectively as they face more losses as the disease progresses (27).

People who are dying often have existential questions such as “why me?” Often significant others, friends, and caregivers may not be able to discuss these issues because of fear of not being able to handle the emotional reactions the patient might have. A practitioner can and should

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encourage patients and caregivers to discuss their feelings, fears, and hopes. This helps the patient and loved ones come to terms with death and can help the survivors with their bereavement.

TABLE 13.4 Grief versus Depression in Terminal Illness

Issue

Grief

Depression

Definition

Feelings and behaviors resulting from a major loss

Depressed mood, decreased interest and pleasure, appetite/sleep disturbance, psychomotor agitation or retardation, loss of energy, feelings of worthlessness, guilt, decreased concentration, thoughts of death, with significant impairment in functioning over a 2-week period

Prevalence

Normal, expected
Associated with disease progression

Not normal
Prevalence of major depression 1%–53%, increased prevalence (as high as 77%) with advanced disease
Pain is a major risk factor and is also exacerbated by depression

Symptoms and signs

Somatic distress, sleep and appetite disturbances, decreased concentration, social withdrawal, sighing

Hopelessness, helplessness, feeling of worthlessness, guilt, and suicidal ideation are the most useful diagnostic clues
Somatic distress, sleep and appetite disturbances, decreased concentration, social withdrawal are also common

Other differentiating symptoms and signs

Patient retains capacity for pleasure
Comes in waves
Passive wishes for death to come quickly
Able to look forward to the future

Nothing is enjoyable
Constant, unremitting
Intense and persistent suicidal ideation
No sense of a positive future

Adapted from Block SD. Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA 2001;285:2898.

Practitioners can and should do the following interventions for grieving patients (28):

  • Encourage open communication
  • Encourage completion of unfinished business
  • Encourage and foster hope
  • Allow opportunity to discuss fears
  • Validate and normalize feelings
  • Provide physical presence
  • Listen empathetically

It is challenging at times to distinguish normal grieving from depression in a patient who is dying. Table 13.4 compares the clinical presentations of each. If depression is diagnosed, treatment can improve quality of life. (For therapy, see Symptom Management in End-Stage Illnesses: Depression below.)

The care of dying patients and their families is rewarding but practitioners also grieve for their patients. Practitioners should be cognizant of their own emotional reactions to their dying patients and attend to their own emotional needs. Talking about their reactions to a death can be helpful. Practitioners who work exclusively in caring for dying persons are at risk for burnout if they do not attend to their own needs. Some activities that can be helpful, although not systematically studied, are writing condolence letters (29) and attending funerals of patients (30). In a 2005 Annals of Internal Medicine feature, “Words that Make a Difference,” Back et al. discuss the benefits of saying goodbye to patients (31). This includes the patient's sense of contributing to others and the practitioner's opportunity to integrate their own reactions to their patient's pending death. The authors outline a seven-step approach to saying goodbye, which is shown in Table 13.5. They note that this will work best for practitioners already comfortable in communication skills and that not all patient relationships lend themselves to saying goodbye.

Symptom Management in End-Stage Illnesses

Symptom management is an important aspect of end-of-life care. Untreated symptoms impact on quality of life and functional status. These symptoms can interfere with patient's ability to address spiritual and psychological issues at the end of life. Primary care practitioners should

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evaluate and treat these symptoms to improve a patient's quality of life and functional status.

TABLE 13.5 An Approach to Saying Goodbye

1. Choose an appropriate place and time.

2. Acknowledge the end of your routine contact and uncertainty about future contact.

3. Invite the patient to respond, and use that response as a piece of data about the patient's state of mind.

4. Frame the goodbye as an appreciation.

5. Give space for the patient to reciprocate, and respond empathetically to the patient's emotion.

6. Articulate an ongoing commitment to the patient's care.

7. Later, reflect on your work with this patient.

Adapted from Back AL, Arnold RM, Tulsky JA, et al. On saying goodbye: acknowledging the end of the patient–physician relationship with patients who are near death. Ann Intern Med 2005;142:682.

TABLE 13.6 Commonly Used Opioids

Name

Initial Dose (mg)a

Usual Dose Rangeb

Dose Interval (hr)

Dose Adjustments Needed

Preparations Availablec

Oral

IM/IV

Oral

IM/IV

Morphine

15–30

10

30–90 mg

10–30 mg

3–4

Renal failure

IV/SQ, IR, PR, liq, liq conc

Morphine SR

15–30

n/a

30–200 mg

8–12

Renal/hepatic failure

SR, PR

Morphine SR

30

n/a

30–1600 mg

24

Renal/hepatic failure

SR

Hydromorphone

4–8

1.5

2–8 mg

1–2

4

Hepatic failure

IV/SQ, IR, PR

Hydromorphone SR

12

n/a

12 mg

24

Hepatic failure

SR

Oxycodone

10

n/a

5–15 mg

3–4

Renal failure

IR, liq, liq conc, PR

Oxycodone SR

10

n/a

10–80 mg

12

Renal/hepatic failure

SR

Fentanyld

n/a

25 mcg/hr

72

Hepatic failure

Transdermal (dosage range 50–300 µg)

Fentanyl

200 µg

n/a

200–1600 µg

2

 

Transmucosal

Methadone

5

2.5

2.5–20 mg daily

2.5–10 mg

6–8

Renal/hepatic failure

IV/SQ, IR, liq, PR

Oxymorphone

n/a

1

3–4

Renal failure

IV/SQ, PR

Meperidine (Demerol)e

N/R

N/R

N/R

Renal failure

IV, IR

aFor patients weighing over 110 pounds who have moderate to severe pain.
bHigher doses are needed in patients who develop tolerance; there is no ceiling dose for narcotics; maximum dose limited by side effects.
cPreparations abbreviations: IR, oral, immediate-release; IV, parenteral suitable for intravenous use; liq, liquid, liq conc, concentrated liquid solution; N/R, not recommended; PR, per rectum via commercial or custom-made suppository or microenema (Davis et al., 2002); SQ, subcutaneous; SR, oral sustained-release.
dNot an optimal choice for opioid-naive patient as 25 µg fentanyl transdermal equals approximately 50 mg morphine.
eNot recommended for use other than for a limited time.
Adapted from Miaskowski C, Clearly J, Burney R, et al. Guidelines for the management of cancer pain in adults and children. APS Clinical Practice Guidelines Series, No. 3. Glenview, IL, American Pain Society, 2005. See also http://www.ampainsoc.org .

Pain Management

Successful pain management involves thoroughly assessing pain, then matching the treatment to the type of pain that is being experienced. Underlying causes of pain should be treated if possible and then appropriate pharmacologic and non-pharmacologic treatments should be initiated. This section focuses on pharmacologic interventions. Non-pharmacologic approaches include physical therapy, ice, heat, massage, acupuncture, hypnoses, relaxation training, guided imagery, and distraction techniques. Several of these approaches are outlined in Chapter 22. The pharmacologic approach includes narcotic medications (Table 13.6) and non-narcotic or adjuvant medications (Table 13.7).

In general, pain can be divided into two types: nociceptive and neuropathic. Nociceptive pain occurs when primary afferent nerve fibers, which are generally located in the skin, organs, muscles, and joints, are stimulated. This occurs with direct injury to an area such as through cuts, sprains, and inflammation. Pain can be acute or chronic. Nociceptive pain is further divided into somatic pain and visceral pain. Somatic pain is localized and described as aching, throbbing, or stabbing. Visceral pain, which occurs in areas of the body enclosed within a cavity, results in more generalized pain, described as cramping, gnawing, or boring and is involved with referred pain as well.

Neuropathic or nerve pain is frequently described as burning, throbbing, or “pins and needles” sensation that may or may not be associated with numbness and tingling. The etiology of nerve pain is multifactorial including nerve damage from radiation, surgery, or particular chemotherapeutic agents (e.g., oxaliplatin, paclitaxel, docetaxel, and vincristine), as well as nerve entrapment from solid tumors, or diabetic neuropathies. Nerve pain may worsen with movement, but frequently persists even at full rest and may be worse at night.

Somatic and Visceral Pain

Somatic and visceral pain organ and soft-tissue discomforts in end-stage conditions are generally managed with the use of narcotics. To optimize outcome and minimize side effects, there are a few basic rules to remember when using narcotics.

TABLE 13.7 Adjuvant Analgesic and Symptom Management Drugs for Adults and Children Weighing 50 kg or More

Class and Drug

Approximate Dosage Range

Administration

Use

Corticosteroids

Dexamethasone

8–96 mg/d

Oral/intravenous

Pain associated with brain metastases and cord compression

Prednisone

40–80 mg/d

Oral

Dyspnea, bone pain

Anticonvulsant agents

Carbamazepine

200–1,600 mg/d

Oral

Neuropathic pain (especially trigeminal neuralgia), seizures

Gabapentin

300–1000 mg/d

Oral

Neuropathic pain, seizures

Phenytoin

300–500 mg/d

Oral

Neuropathic pain, seizures

Antidepressant agents

Amitriptyline

25–150 mg/d

Oral

Neuropathic pain, depression with sleeplessness

Doxepin

25–150 mg/d

Oral

Depression with sleeplessness

Imipramine

20–100 mg/d

Oral

 

Neuroleptic agents

Methotrimeprazine

40–80 mg/d

Intramuscular

Analgesia, sedation, and antiemetic (not available in United States)

Antihistamines

Hydroxyzine

300–450 mg/d

Intramuscular

Adjuvant to opioids for pain; relief of itching, anxiety, insomnia, nausea

Cetirizine

5–10 mg d

Oral

Urticaria, itch

Fexofenadine

60–90 mg b.i.d.

Oral

Urticaria, itch

Loratadine

10 mg

Oral

Urticaria, itch

Local anesthetic and antiarrhythmic agents

Lidocaine

5 mg/kg/da

Intravenous, subcutaneous, topical

Neuropathic pain. Topical patches are excellent for postherpetic neuralgias

Psychostimulants

Dextroamphetamine

5–10 mg/d

Oral

To improve opioid analgesia and decrease sedation

Methylphenidate

10–15 mg/d

Oral

 

aThe dosage given is per kilogram of body weight per day.
Adapted from Agency for Health Care Policy and Research (AHCPR). Management of Cancer Pain: Clinical Practice Guideline. Publication No. 940592, 1994.

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  1. Long-acting formulations of narcotics should be used for long-term pain control (Table 13.6).
  2. Avoid using multiple long-acting formulations.
  3. Short-acting narcotic formulations should be used when titrating narcotics for acute pain relief but should be converted to long-acting formulations when baseline dose is established (Table 13.6).
  4. Short-acting formulations should be used for rescue dose or breakthrough pain, be one-fourth to one-third of the 12-hour long-acting dose, and be available every 2 to 3 hours (Tables 13.6 and 13.7).
  5. Avoid narcotic combination products; the combination product limits dose escalation because acetaminophen and ibuprofen, often in these combination products, have a maximum dose whereas narcotics have no ceiling.
  6. Always start a bowel regimen with narcotics unless contraindicated.
  7. Assess the adequacy of pain relief after 24 hours of a change in a long-acting medication.
  8. If patients are using “rescue doses” more than three times a day the long-acting medication should be increased. Calculate the new daily dose by adding the total long-acting pain medication with the amount of the rescue dose used in 24 hours. The new 24-hour requirement can then be converted to the appropriate long-acting dose and the breakthrough dosing increased if needed.

Examples

o   Long-acting: 90 mg morphine sulfate (MS Contin) q8h.

o   Rescue dosing: 20 mg liquid morphine q4h p.r.n; used six doses in the last 24 hours.

o   90 × 3 = 270

o   20 × 6 = 120

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o   Total: = 390 mg: Because MS Contin can be given every 8 or 12 hours, the new dose could be 200 mg q12h or 130 mg q8h.

 

FIGURE 13.1. Representative samples of pain intensity rating scales. (Adapted from 

Whaley L, Wong D. Nursing care of infants and children. 3rd ed. St. Louis: CV Mosby, 1987:1070

.)

o   Rescue dose is calculated on one-fourth of the 12-hour dose, or 50 mg. Increase rescue dose to 40–60 mg q4h p.r.n.

  1. The oral route is the preferred route of administration. Intermittent intramuscular injections should be avoided. When an oral route is unavailable, transmucosal, transdermal, rectal, and subcutaneous, and intravenous routes are available (Table 13.6).
  2. In evaluating pain control outcome, pain scales can provide an ongoing record of effectiveness of pain treatment. Several scales are available and illustrated in Fig. 13.1.
  3. Use a table that lists equianalgesic doses when switching opiate medications (Table 13.8).

Managing Bone Pain

Bone pain can arise from primary bone cancers and metastatic cancer sites, as well as from arthritis and fractures. This pain is frequently described as a generalized or limb-specific achelike pain that worsens with movement or at night. In many instances, the degree of bone pain is increased by the presence of edema and inflammation. Additionally, there is an interaction between the tumor and the host, which causes the release of various growth factors and cytokines, some of which (e.g., endothelin-1) have been implicated in the etiology of cancer-related bone pain. Agents that specifically target these substances are currently in clinical trials.

TABLE 13.8 Commonly Used Opioids: Equianalgesic Doses

Drug

Oral/Rectal Dose (mg)

Parenteral Dose (mg)

Morphine

30

10

Hydromorphone

7.5

1.5

Oxycodone

20

n/a

Methadone

10

5

Oxymorphone

n/a

1

Meperidine1

300

75

Conversion Between Fentanyl Transdermal Patch and Parenteral or Oral Morphine

Fentanyl (µg/hr)

Morphine (mg/24 hr)

Oral

IM/IV

25

50

17

50

100

33

75

150

50

100

200

67

125

250

83

150

300

100

IM, intramuscular; IV, intravenous; n/a, not available in this form.
Adapted from American Pain Society. Principles of analgesic use in the treatment of acute pain and cancer pain. 5th ed. Glenview, IL, American Pain Society, 2003.

Inflammation responds well to the use of steroids and nonsteroidal anti-inflammatory medications (NSAIDs); consequently, NSAIDs are particularly useful in bone pain. Dexamethasone (Decadron) at doses of 4 to 12 mg two to three times a day and prednisone 10 to 40 mg per day are beneficial in combating bone pain. NSAIDs are an excellent tool for palliation and remain effective even when combined with narcotic pain relievers in minimizing distress from bone pain. Most NSAIDs come in oral form; ketorolac, however, is also available as an intravenous or intramuscular injection. Ketorolac dose should be limited (all forms) to a total of 5 days of treatment.

In the setting of bony metastasis, intravenous bisphosphonates, such as zoledronic acid (Zometa) 3 to 4 mg monthly or pamidronate (Aredia) 30 to 90 mg monthly, are useful to improve pain control and to decrease risk of pathologic fractures. For uncontrolled pain from osteoblastic bony lesions, strontium-89 or samarium-153 radionuclide therapy can be considered. These are given as a single intravenous injection. Side effects can include an initial flare in bone pain about a week after injection, which lasts a few days, as well as thrombocytopenia and anemia, which are greatest at 5 to 6 weeks after treatment. Relief is generally obtained in 7 to 21 days. Subsequent retreatments should be at least 12 weeks apart and only after blood counts have returned to baseline. Contraindications include a life expectancy less than 3 months, severe myelosuppression, urinary incontinence, or severe renal insufficiency (32).

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Neuropathic Pain

Narcotics have some impact on nerve pain (33). However, research shows poor consistency in achieving adequate pain control with narcotics alone (34,35). This is theorized, in part, from a phenomenon known as windup. Windup occurs when the secondary afferent pain receptors become permanently turned on causing chronic pain and stimulating an intermediary receptor called N-methyl-D-aspartate (NMDA). Methadone is inhibitory to NMDA making it a good choice for neuropathic pain. Neural changes, which can occur with prolonged pain, may change the type of binding sites making narcotics less useful. These changes also contribute to escalating pain scenarios with minimal increase in stimuli. Fortunately, research does support the usefulness of other treatment modalities in managing neuropathic pain (36).

Topical lidocaine patches applied over areas of discomfort from postherpetic neuralgia is useful (37). Up to three may be applied and left on for 12 hours at a time, every 24 hours. Conflicting research exists for topical capsaicin, which was found to be helpful for diabetic neuropathy, but not for neuropathies of other etiologies (38).

Adjuncts such as tricyclic antidepressants (TCAs) and antiepileptics have shown benefit in relieving the symptoms of nerve pain (38, 39,40). Although TCAs are effective, they frequently cause dry mouth, constipation, orthostasis, arrhythmias, and other side effects that can detract from quality of life. A growing body of research continues to support the use of antiepileptic drugs such as gabapentin and carbamazepine in managing neuropathies of various etiologies (34,35,38, 39, 40). Side-effect profiles of antiepileptics can include dry mouth and somnolence, but these are usually dose dependent. Other medications, such as baclofen, are also being investigated (36).

Transcutaneous electrical nerve stimulation (TENS) units are another adjunct to managing nerve pain, especially in association with soft-tissue discomfort. The units are small (about the size of a pager or wallet), battery operated, and have small wires with electrodes that are placed on the skin around the painful area or between the pain source and the spine (not over the spine, neck, or head). TENS should be avoided in people with pacemakers or automated internal defibrillators.

Although multiple modalities exist to improve nerve pain, in some cases, sufficient relief is still not obtained. When a combination of these interventions still fails to produce adequate control of neuropathic pain, nerve blocks should be considered.

Addiction and Tolerance

Inadequate pain relief can be caused by patients’ and practitioners’ misconceptions of narcotics. Because of fear on the part of the health care provider of inducing addiction, patients may receive dosages of narcotics that are too small or too infrequent to relieve pain adequately. Some patients are hesitant to use narcotics fearing addiction or that the medication will not be beneficial when they are “really in pain.” Addiction is not a common problem when narcotics are used in this setting. Explaining to patients the difference between physical dependence, psychological dependence (addiction), and tolerance can be helpful to overcome patient fears. Physical dependence refers to the withdrawal syndrome that occurs with abrupt withdrawal of narcotic. Tolerance refers to the need to increase the dose of narcotic to get the same amount of relief. Psychological dependence or addiction involves the use of narcotics for nonmedical purposes with no improvement in quality of life.

Managing Side Effects of Narcotics

Narcotic analgesics and disease progression may both cause the following: respiratory depression; nausea and vomiting; constipation; sedation; urinary spasms, retention, and incontinence; myoclonus; and pruritus or rash. These side effects, whether from narcotics or the disease process are treated similarly.

Respiratory Depression

Respiratory depression is unlikely if narcotics are titrated appropriately. There may be a rare occasion to reverse narcotic-induced respiratory depression. When possible, one should simply withhold the next scheduled dose. If quick reversal is needed, this can be achieved with small doses of naloxone (Narcan) (0.1 to 0.2 mg) intravenously every few minutes. Unfortunately, the use of naloxone severely increases the risk of acute withdrawal and severe pain, which precipitates acute vomiting, as well as severe abdominal cramping, agitation, and perspiration, consistent with acute narcotic withdrawal seen in other populations.

Nausea

Nausea can occur with the use of narcotics, especially in the first 2 weeks, and should be treated aggressively. Nausea and vomiting can also result from tumor invasion, gastroparesis, bowel obstruction, and side effects of other treatment regimens. Multiple strategies exist to decrease nausea and vomiting while improving associated symptoms. Table 13.9 lists strategies to control nausea and vomiting.

Chemotherapy and radiation treatments can also produce nausea and vomiting. Chapter 10 provides more in-depth information on chemotherapy and radiation-induced nausea and vomiting.

Constipation

Narcotics cause constipation. Unless contraindicated, every person who is on a narcotic should be on a bowel

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regimen to prevent constipation. Bulk laxatives require an adequate intake of food and fluid to be effective and may have little use in the terminally ill patient with poor oral intake. A stool softener alone is rarely effective for narcotic-induced constipation. Combination strategies are the most useful. An example of a basic bowel regimen would include two senna with 200 mg of docusate sodium, twice a day, with the addition of 1 ounce of lactulose, sorbitol, or milk of magnesia daily as needed. The goal is to produce a bowel movement every 1 to 3 days.Table 13.10 lists strategies to manage and prevent constipation.

TABLE 13.9 Nausea and Vomiting Interventions

Intervention

Dose

Comments

Change to another opioid at comparable dose

 

This may eliminate nausea and vomiting completely.

Take narcotics with food

 

May diminish or prevent nausea.

Prochlorperazine (Compazine)

5–10 mg PO q4-6h
15 mg spansule q6-12h
25 mg suppository q4-6h

Compazine causes less sedation and hypotension than chlorpromazine. May cause acute extrapyramidal symptoms (e.g., dystonic reactions) that usually respond to diphenhydramine 1–2 mg/kg (adults) up to a maximum of 50 mg intramuscular or slow intravenous push followed by a maintenance dose for 48–72 hours.

Haloperidol (Haldol)

0.5–2 mg orally or subcutaneously q6-8h

Especially helpful if agitation is also a concern.

Lorazepam (Ativan)

0.5–2.0 mg orally q8h

Helpful in the presence of anxiety or agitation as well.

Megestrol acetate (Megace)

160–800 mg orally, maximum daily 60 mg

Has no effect on quality of life or survival.

Metoclopramide (Reglan)

10–20 mg orally or intramuscularly before meals

Useful for gastric fullness.

Dexamethasone (Decadron)

2–4 mg q8-24h

Improves overall sense of well-being; potentiates Reglan.

Hyoscyamine (Levsin)

1–2 tablets q4h

Decreases upper airway secretions.

Octreotide (Sandostatin)

50–250 µg subcutaneously or intravenously q8h

Useful in intestinal obstruction by decreasing gastrointestinal secretions. More costly than other measures.

Scopolamine patch

1.5-mg patch behind ear; change every 3 days

Decreases upper airway secretions.

Sedation

Sedation is a concern for some people on narcotics. Oversedation can significantly impair quality of life. Sleepiness is not the same thing as pain control. By combining various pain management modalities and appropriate classes of pain medications to target particular pain sources, sedation can be reduced and quality of life improved. An example of this is the use of NSAIDs, narcotics, and a TENS unit to control a combination of nerve and soft-tissue discomfort. When successful pain management cannot be achieved without sedation, the use of methylphenidate (Ritalin) may be helpful to combat the lethargy associated with analgesics. When pain control is achieved, patients often sleep for an extended period. This should not be confused with sedation from the narcotics.

Urinary Spasms, Retention, and Incontinence

Urinary spasms can cause leakage of urine without pain or leakage with discomfort. Oxybutynin and tolterodine can be helpful for spasms alone. The associated discomfort from bladder spasms can be improved by using phenazopyridine (Pyridium), lorazepam, or low-dose diazepam. The use of an indwelling urinary catheter for continual bladder drainage may also be helpful in relieving bladder spasms without using additional pharmacotherapies. Urinary retention is caused directly by the effect of narcotics on the bladder, or indirectly by causing constipation. Decreasing the narcotic dose can help, as can aggressively treating constipation. An indwelling urinary catheter might be necessary in end-stage disease for comfort of the patient.

Myoclonus

Metabolites of narcotics (especially hydromorphone, morphine, and oxycodone) can build up and become neurotoxic causing myoclonus and hyperalgesia (41). This is most common with high-dose opiates. The resulting spasms increase pain causing the person to take more pain medication, seeking relief. This, in turn, causes a further build-up of metabolites and a worsening of spasms, resulting in more pain, for which additional pain medications are taken. This relentless cycle can greatly hamper quality of life and cause lethal seizures if it is not interrupted (42).

TABLE 13.10 Strategies to Manage and Prevent Constipation

Intervention

Starting Dose

Dose Range

Comments

1. Senokot (senna) Part of daily bowel regimen

1–2 pills by mouth twice a day

Up to 4 pills twice a day

Daily usage; take with a glass of liquid; works well combined with Colace

Colace (docusate sodium)
Part of daily bowel regimen

100–200 mg twice a day

Up to 4 pills twice a day

Daily usage; take with a glass of liquid; works well combined with Senokot

2. Lactulose

30–60 mL daily as needed

Up to 30–60 mL four times a day

Causes excessive gas and cramping in those who are lactose intolerant

Sorbitol

30–60 mL daily as needed

30–60 mL four times a day

Can be used alone or in addition to senna and Colace for bowel regimen

Milk of magnesia (MOM)

30–60 mL daily as needed

30–60 mL twice a day

May use once daily (single agent) or with senna and Colace for constipation relief

3. Check for impaction

 

 

If Colace, senna, and either lactulose, sorbitol, or MOM are not beneficial after 24–48 hours

4. Dulcolax suppository (bisacodyl)

1 suppository daily

 

Can cause cramping; do not use with an impaction

5. Fleet enema (or other soap suds enema)

1 daily as needed

2 daily forconstipation

Can be used with an impaction; not to be used as daily bowel regimen

6. Magnesium citrate

120 mL daily as needed

Up to 240 mL at one time

Use for constipation relief, not as daily bowel regimen

7. GoLYTELY (polyethylene glycol)

120 mL daily by mouth

Up to 500 mL per day

Can cause electrolyte imbalances

8. Milk and molasses enema (use ONLY when all other methods have failed)

120 mL molasses added to 480 mL of milk

MAX: equal parts of milk and molasses

NEVER USE FOR CHILDREN; warm to 103°F; ONLY USE WITH AN INTACT BOWEL

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Myoclonus is an easily reversible symptom. Benzodiazepines such as lorazepam (Ativan) (1 to 2 mg orally or sublingually every 8 hours) and diazepam (Valium) (2–10 mg orally every 6 to 8 hours) work well to initially break the cycle (43). The dose of opiate should be decreased by 10% to 20% (or more) to allow for the clearance of metabolites. Sometimes it is necessary to change to a different opiate. Calculating equal analgesia should involve decreasing the dose of the new narcotic by approximately 30% until it is determined how the patient tolerates this new regimen (42). People who have been experiencing uncontrolled pain, especially with myoclonus and hyperalgesia, can become frightened and anxious when they hear their medication dosages are going to be decreased. Careful explanation of the mechanism of their myoclonus and hyperalgesia and of the additional measures being initiated to improve their comfort is required to allay their fears.

When pain cannot be controlled without myoclonus and hyperalgesia, the initiation of intravenous midazolam (Versed) can be used. This will require an inpatient setting.

Pruritus and Rash

Narcotics, renal and hepatic failure, as well as other disease- and treatment-related concerns can cause skin rashes and itching. Treatments that add minimal side effects are often best. Pruritus can be managed by emollient creams, aloe vera gels, anti-itch lotions (e.g., Sarna lotion), and topical diphenhydramine (Benadryl). Rashes should be treated according to their offending source if identified. Fungal rashes often respond to topical antifungal creams applied in a thin coating twice daily. In areas of high moisture, fungal rashes may be difficult to manage. Anecdotal evidence supports the use of 15 g of Nystatin powder (100,000 USP U/g concentration) mixed into a 16-ounce jar of zinc oxide. This can be applied to the affected skin daily or twice daily. Resistant rashes, hives, and itching can also be relieved by nonsedating antihistamines such as cetirizine, fexofenadine, and loratadine.

Insomnia

When insomnia is a problem, a benzodiazepine hypnotic can be used to induce sleep (see Chapter 7). Another consideration is the use of trazodone, which is beneficial for sleep and depression. Newer medications such as zolpidem (Ambien) are very useful to induce sleep and have less morning sedation, which can detract from quality of life.

Anxiety and Agitation

Concern on part of practitioners and other caregivers to the needs of the dying person may be all that is necessary to relieve early anxiety in the dying patient. Anxiolytic drugs also can be of some help in the management of these patients. Alprazolam (Xanax) 0.5 to 2 mg may be given every

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8 hours either as needed or around the clock. Maximal dosing is up to 6 mg in 24 hours. Lorazepam (Ativan) 0.5 to 2 mg can be used every 6 to 12 hours. The sedating antihistamine hydroxyzine (Atarax, Vistaril), 25 to 50 mg by mouth three times daily, may also help patients who have anxiety associated with pain. A number of psychologic approaches (hypnosis, relaxation training, guided imagery, distraction techniques) are also useful for the cancer patient with pain and anxiety (see Nonpharmacologic Approaches in Chapter 22).

Terminal Anxiety

Terminal anxiety refers to the anxiety and frequent movement that may occur in the final days or hours prior to death. It can be distressing for caregivers who may be physically fatigued from the requirements of care or who may perceive their loved one to be suffering. Increased movement and agitation may also worsen pain. To minimize this anxiety, low-dose lorazepam (Ativan) at 0.5 to 2.0 mg every 4 to 12 hours is useful. If the anxiety and agitation do not respond well to lorazepam, haloperidol at 1 to 5 mg every 6 to 12 hours may be used instead of or in addition to lorazepam.

Depression

Many people experience transient depression when they learn they have a terminal prognosis. In some instances, the support of practitioners, as well as of family and friends, is all that is necessary for them to adjust to the mental, physical, emotional, and spiritual challenges they experience. For others, the diagnosis and prognosis will overload their present ability to cope, resulting in clinical depression. It is wrong to assume that depression will pass on its own without some level of intervention from present support systems, hospice support services, or the use of antidepressants. Managing pain is an essential part to minimizing terminal depression. Some patients, however, develop severe depression, particularly after a brief stage of anger. Loss of self-esteem, guilt feelings, psychomotor retardation, early morning awakening with a diurnal variation in mood, and even suicidal thoughts may appear in this setting. Discussion of suicide, even in a terminally ill and suffering patient, should raise the question of depression. When a number of these and other indicators of a major depression are present, antidepressants may bring relief. Standard depression medications are useful with consideration to their particular side effects. For instance, mirtazapine (Remeron) given at night is an excellent choice to improve sleep and stimulate appetite, while sertraline (Zoloft) is a good choice to be more awake during the day. There is a detailed discussion of the use of these drugs inChapter 24.

Delirium

Periodic or persistent delirium (inattentiveness, inaccessibility, inability to recognize loved ones, gross confusion) is very common in the final days or weeks of terminal disease (44,45). In fact, most terminal cancer patients die in delirium (45). However, most of these patients do not have an agitated delirium, and their course is characterized by increasing withdrawal and somnolence. Some patients continue in a state of agitated delirium and require chronic medication. Haloperidol was more useful than benzodiazepines and phenothiazines in the treatment of agitated delirium (46). Risperidone has also been shown to be beneficial in case reports (47). There are conflicting data to support the use of hydration to improve terminal delirium (45,48). If an identifiable cause can be isolated, it should be treated to improve quality of life. Loss of clear communication as a result of delirium may be distressing to the patient's family. Management of easily reversible causes is therefore important except in the patient whose death is imminent. A list of the principal causes of delirium is found inChapter 26.

Dyspnea

Dyspnea, best described as difficult or uncomfortable breathing, is a common and distressing symptom for the dying patient. It is important to focus on the patient's symptoms and not the observer's interpretation of physical findings when evaluating and treating dyspnea. Patients who are tachypneic may not feel dyspneic, yet patients breathing normally may indeed experience dyspnea.

Physical impediments to breathing and psychologic fears and discomfort are often commingled when a patient is near death. In this situation, a number of approaches can be combined for maximal effect. First, position the patient for maximal comfort and ease of breathing. For many this will be upright in bed or in a chair. Administering oxygen (if the patient is hypoxic) is useful (49), but not always necessary. Patients may feel better if air is circulated past them from a fan or an open window. The addition of low-dose opiates in the narcotic-naive patient is also beneficial. Morphine doses of 2–10 mg or oxycodone 2–5 mg (by mouth or sublingually), every 2 to 4 hours is generally effective to relieve dyspnea without respiratory suppression. For those already on narcotics for pain control, increasing the long-acting dose or frequency of rescue dosing may alleviate symptoms. The beneficial effects of narcotics on dyspnea are usually shorter than their effect on pain, requiring the administration of morphine in small doses, hourly in some instances.

The usefulness of nebulized morphine is controversial. It has been found equally effective as subcutaneous morphine in dyspnea from cancer (50), but was found to cause

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more hypercapnia and respiratory depression for those with chronic obstructive pulmonary disease (COPD) (51). Other trials have had mixed support, whereas some have failed to find it more useful than placebo (52,53). Bronchodilators are useful in relieving dyspnea, and there is evidence that these are underused in dying patients (52,53).

Steroids are helpful for dyspnea related to radiation pneumonitis, lymphangitic pulmonary metastases, exacerbation of COPD, or chemotherapy-induced hypersensitivity lung disease. Phenothiazines such as chlorpromazine and promethazine decrease dyspnea associated with chronic lung disease, probably because of their sedative effects, as does buspirone (52).

If patients have rapidly recurring pleural effusions, a small-diameter tube (pigtail catheter) can be placed in the radiology suite, left in for days to weeks, and managed at home without the discomfort associated with chest tube placement and sclerosis.

Hydration

Whether or not to supplement oral fluid intake in the dying patient is a complex issue and lacks randomized studies to help in the decision. Research demonstrates a weak relationship between the experience of thirst and the patient's actual state of hydration (54). Thirst occurs in some patients who are dying and can almost always be alleviated by good oral hygiene and a modest amount of oral fluids (55). It does not appear that thirst is a reason to consider parenteral fluids. Studies are lacking to know if intravenous or subcutaneous hydration is helpful in improving symptoms at the end of life. A small placebo-controlled trial demonstrated improvement in myoclonus and sedation in a group of patients with advanced cancer, dehydration, and decreased fluid intake given normal saline intravenously or subcutaneously (56). This study indicates the need for further studies with larger number of patients to resolve this issue.

Specific References

For annotated General References and resources related to this chapter, visit http://www.hopkinsbayview.org/PAMreferences.

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