Providing Care and Comfort

Comfort care is essential at the end of life.

At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually fading. For some older people, the body weakens while the mind stays alert. Others remain physically strong, but cognitive losses take a huge toll.

Each loss is personally felt by those close to the one who has died.

End-of-life care is the term used to describe the support and medical care given during the time surrounding death. Such care does not happen only in the moments before breathing ceases and the heart stops beating. Older people often live with one or more chronic illnesses and need a lot of care for days, weeks, and even months before death.

When a doctor says something like, “I’m afraid the news is not good. There are no other treatments for us to try. I’m sorry,” it may close the door to the possibility of a cure, but it does not end the need for medical support. Nor does it end the involvement of family and friends.

There are many ways to provide care for an older person who is dying. Such care often involves a team. If you are reading this, then you might be part of such a team.

Being a caregiver for someone at the end of life can be physically and emotionally exhausting. In the end, accept that there may be no perfect death, just the best you can do for the one you love. And, the pain of losing someone close to you may be softened a little because, when you were needed, you did what you could.

It is care that helps or soothes a person who is dying.

The goals are to prevent or relieve suffering as much as possible while respecting the dying person's wishes.

[Dyspnea frequently occurs in patients nearing the end of life. Opioid therapy, anxiolytics, and corticosteroids can provide substantial relief independent of the severity of hypoxemia. ]

Peaceful death, with treatment consistent with the dying person's wishes.

A peaceful death might mean something different to you than to someone else. Your sister might want to know when death is near so she can have a few last words with the people she loves and take care of personal matters. Your husband might want to die quickly and not linger. Perhaps your mother has said she would like to be at home when she dies, while your father wants to be in a hospital where he can receive treatment for his illness until the very end.

Some people want to be surrounded by family and friends; others want to be alone. Of course, often one doesn't get to choose. But, avoiding suffering, having your end-of-life wishes followed, and being treated with respect while dying are common hopes.

Generally speaking, people who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks. Their families need support as well. In this section, you will find a number of ways you can help someone who is dying. Always remember to check with the healthcare team to make sure these suggestions are appropriate for your situation.

What is End-of-Life Care?

• What is End-of-Life Care?
• End-of-Life: Providing Physical Comfort
• End-of-Life: Managing Mental and Emotional Needs
• Spiritual Needs at the End of Life
• End-of-Life: Planning Ahead

End-of-Life: Providing Physical Comfort

There are ways to make a person who is dying more comfortable. Discomfort can come from a variety of problems. For each, there are things you or a healthcare provider can do, depending on the cause. For example, a dying person can be uncomfortable because of:

• Pain
• Breathing problems
• Skin irritation
• Digestive problems
• Temperature sensitivity
• Fatigue

Pain. Watching someone you love die is hard enough, but thinking that person is also in pain makes it worse. Not everyone who is dying experiences pain, but there are things you can do to help someone who does. Experts believe that care for someone who is dying should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse.

Counsel and comfort dying patients and their significant others. Critical care physicians often must redirect the goals of care from resuscitation and cure to comfort.

When taking care of patients with low functional reserve the physician should transition from cure to palliative care. At the terminal phase of life care shifts from intervention to comfort.

Eliciting patient’s goals as to what they want and what they want to avoid is fundamental to crafting an end-of-life framework that is consistent with their values and preferences. Home visits enhance this relationship and often reveal opportunity for interventions and support.¹

The patient should decide where he/she will spend his/her final days.

Identify what type of palliative care and hospice care patient wishes to receive. Help patient find hospice care, what happens at the time of death, managing grief, and preparing advance directives. Advance directives can help make patient wishes clear to your family and health care providers. Terminal illness may close the door to the possibility of a cure, but it does not end the need for comfort support. Nor does it end the involvement of family and friends.

 Care of the Imminently Dying

But defining when this phase actually begins is not straightforward. Is it when the patient is in the last hours of life, or does it begin earlier, when a potentially incurable illness is diagnosed? What about patients who die suddenly? About 1 in 10 people die without any warning, with no preceding illness, and with no time for care.[2] Medical advances such as device therapy for heart failure and noninvasive ventilation for chronic obstructive pulmonary disease have revolutionized end-stage disease and made it more difficult to clearly recognize a dying phase.

Making the diagnosis of dying is essential for good end-of-life care. Barriers to the diagnosis need to be overcome (Box 177-1).[3] Failure to make the diagnosis has negative consequences, not only for the patient but also for the family and health care professionals. The patient may experience uncontrolled symptoms. Inappropriate treatment plans may be instituted, including cardiopulmonary resuscitation. Patients and relatives may get conflicting messages, potentially resulting in loss of trust, dissatisfaction, and formal complaints. Health care professionals may become disillusioned with inappropriate management of patients, causing disharmony within the team. If team members disagree, then mixed messages and opposed goals can cause poor patient management and confused communication.

In the past, health care professionals have been reluctant to make the diagnosis of dying, because it seemed akin to giving up–an admission that nothing more could be done. Such reluctance is no longer acceptable. In fact, this is the very moment when the hospice model of intensive palliative care should come into action, providing physical, psychological, social, and spiritual care for patients and their relatives (Box 177-2).

The physical moment of death can usually be recognized as the cessation of breathing and the absence of a pulse. However, the medicalization of dying has made recognition of the moment of death challenging.

Barriers to the Acceptance of Dying

•    Unrealistic expectation that the patient may get better    •    Disagreement within the team or with the family that the patient is dying    •    No definitive diagnosis    •    Lack of knowledge of the management of pain and other symptoms at the end of life    •    Poor communication skills    •    Concerns about withdrawing or withholding treatment    •    Fear of foreshortening life    •    Misinterpretation of the principle of double effect    •    Concerns about resuscitation    •    Cultural and spiritual barriers    •    Legal complexities

Box 177-2 

Goals of Care for Patients in the Dying Phase

•    Use a problem-solving approach to symptom control    •    Avoid unnecessary interventions    •    Perform regular review of drugs and symptoms    •    Address psychological and insight issues    •    Provide religious and spiritual support for the patient    •    Communicate with family and carers    •    Update the primary health care team

CLINICAL EVALUATION Dying

Dying is a dynamic process. The concept of a dying trajectory, first suggested in 1965, refers to the change in health status over time as death approaches.[4] The process is influenced by many factors, the most important of which is the underlying disease.[5] It is remarkable how similar dying trajectories can be for comparable diseases.

There are four prototypal death trajectories. Some people die suddenly without warning. Figure 177-1 shows the three other trajectories: steady progression and a predictable terminal phase, gradual decline punctuated by episodes of acute deterioration, and prolonged gradual decline.[6,7]

FIGURE 177-1  Death trajectories. Rights were not granted to include this figure in electronic media. Please refer to the printed book. (Adapted from Lunney JR, Lynn J, Hogan C. Profiles of older Medicare decedents. J Am Geriatr Soc 2002;50:1108-1112.

When patients are within days or weeks of death, certain signs are present. Alone, these signs could be related to potentially reversible causes. When present together, they are more likely to represent an irreversible process. The following are signs of approaching death:

	•	Bedridden or able to get out of bed only with great difficulty
	•	Profound weakness
	•	Little interest in food and drink
	•	Difficulty swallowing
	•	Increasingly somnolent

In the final days and hours of life, the following signs will probably be present:

	•	Skin gets cold, from the periphery inward
	•	Skin feels clammy
	•	Color of the skin of the extremities and around the mouth may become cyanotic
	•	Urine output may decrease
	•	Level of consciousness will diminish
	•	Patient may “rattle” when breathing
	•	Respiration is irregular and shallow–a Cheyne-Stokes pattern
	•	The face may look waxen
	•	The muscles of the face may relax, and the nose may become more prominent

Nursing staff in direct contact with the patient may be the first to recognize that the patient is dying. Patients should be assessed regularly, because the goals of care should be revised to meet the rapidly changing clinical situation.

Altered States of Consciousness That May Precede Death

Consciousness was first defined in 1890 as awareness of the self and the environment.[8] Consciousness has two dimensions: wakefulness and awareness. Altered states of consciousness, from mild delirium to coma, often precede death.

Delirium

Delirium is defined as a transient organic brain syndrome that is characterized by the onset of disordered attention and cognition and is accompanied by disturbances of psychomotor behavior and perception.[9] It is observed in up to 88% of patients before death (see  Chapter 156).[10]

Coma

Coma is a state in which a person is totally unaware of both self and external surroundings and is unable to respond meaningfully to external stimuli.[8] Coma results from gross impairment of both cerebral hemispheres and/or the ascending reticular activating system. Causes can be classified as either focal or diffuse brain dysfunction. The truly comatose patient is deeply unconscious, with no response to pain. If coma cannot be reversed, it will progress to irreversible brain damage and death.

Vegetative State

A vegetative state is a clinical condition of complete unawareness of the self and the environment in which the patient breathes spontaneously, has a stable circulation, and shows cycles of eye closure and opening that may simulate sleep and waking.[11] Persistent vegetative state is a vegetative state that is present 1 month after acute traumatic or nontraumatic brain injury. A permanent vegetative state is a vegetative state that is present for 12 months or longer.

The diagnosis of a vegetative state can be made if (1) there is no behavioral evidence of awareness of self or environment; (2) there is brain damage, usually of known cause, consistent with the diagnosis; and (3) there are no reversible causes. All available sources of information should be used when making the diagnosis; all written records, including nursing notes, should be reviewed, and staff who have cared for the patient over time should be interviewed. It is particularly important to interview family members. They may observe behavior that indicates awareness, and their opinion on the patient's level of awareness must be sought.

A patient in a vegetative state is unable to give or imply consent. The probability of recovery from a vegetative state is very low, and decisions about continuation of medical care are usually referred to the courts.[11] Any decision to withdraw feeding should be consistent with the principles of autonomy, nonmaleficence, beneficence, and justice. After artificial nutrition and hydration are withdrawn, a patient in a persistent vegetative state usually dies within 10 to 14 days.[12] The immediate cause of death is dehydration and electrolyte imbalance. Some die from intercurrent acute illnesses, such as pneumonia. Others may die from underlying cardiac or renal disease if medications are also discontinued.

The question arises whether patients in a permanent vegetative state can experience pain and suffering. The perceptions of pain and suffering are conscious experiences: unconsciousness, by definition, precludes them. It is unlikely that people in true vegetative states experience pain, but grimace-like or crying-like behaviors are common. These patterned behaviors are mediated at the subcortical level and are not manifestations of perceived pain.[13]

In rare cases, there may be uncertainty as to the diagnosis. For example, it may be difficult to distinguish a persistent vegetative state from a severe locked-in state. A locked-in syndrome is a state in which consciousness and cognition are retained but movement and communication are impossible because of severe involuntary motor paralysis.[14] The syndrome can occur with diseases of the peripheral motor nervous system such as motor neuron disease. Under such circumstances, a patient may be unable to express behavioral responses to painful stimuli, or the responses may be extremely difficult to detect; the absence of a response cannot be taken as proof of the absence of consciousness. If there is any doubt about the diagnosis and the ability of the patient to perceive pain, it is best to err on the side of caution and administer analgesia.

Diagnosis of Death and Dying

The diagnosis of dying is central to optimal management at the end of life.

Altered states of consciousness may precede death, including delirium, coma, and persistent vegetative state.

Natural death is defined by the absence of cardiorespiratory function.

Brain death is defined as the irreversible cessation of all functions of the entire brain, including the brainstem.

Unnatural death requires legal investigation.

 

Reference

 

Norma O'Leary CHAPTER 177 – Diagnosis of Death and Dying in

Walsh: Palliative Medicine , 1st ed.

Copyright © 2008 Saunders, An Imprint of Elsevier

Euthanaisa: http://euthanasia.procon.org/

 

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Ethical Considerations and Controversy

To many patients facing a fatal illness, the goals of

• Testing until diagnoses are well-established
• Correcting all physiologic abnormalities, even asymptomatic ones
• Pursuing a cure, even when cure is unlikely and therapy is toxic, invasive, or uncomfortable

may be less important than

Avoiding suffering

With their family and friends) finding comfort

and meaningfulness during the experience of dying.

Thecare of the dying patient should be guided by a realistic assessment of the situation and the merits of various interventions in light of the patient's values and wishes.

 

 

 

People's priorities differ, especially when facing death. Some prefer life to be prolonged, even at the cost of pain, marked confusion, or severe respiratory distress. They may cherish every moment of life, regardless of its quality. For others, quality of life is the overarching concern. They may fear pain or confusion more than death and prefer comfort measures and shorter survival to prolonged disability and struggle. However, to say that a patient's care has changed from curative to supportive or from treatment to palliation is an oversimplification of a complex decision process. Most patients need a customized mix of treatment to correct, prevent, and mitigate the effects of various illnesses and disabilities.

Some people search for closure: They reach out to friends and family to share time and to express love; they complete projects important to their lives and tie up loose ends. Often, with appropriate support, people die at a time and in a way that allows them to experience a satisfying close. Other people cannot accept their imminent mortality and avoid such closure.

Effective care for dying patients usually involves a clinical team because no one caregiver is available 24 h/day and because comprehensive, reliable care requires the skills and perspectives of several disciplines. Palliative care or hospice teams anticipate potential problems and make appropriate arrangements, such as obtaining supplies or opioids in anticipation of a potential emergency. Certain team members can help dying patients who have spiritual needs; such needs should be recognized, acknowledged, and addressed. When death is imminent, an experienced team member can comfort family members and may prevent an inappropriate call to the emergency medical system.

When Death Is Near

The physician and the clinical team should prepare patients and family members for death whenever patients have a condition likely to worsen and cause death, even if death may be a few years in the future. Preparation includes discussion of the likely course and possible complications. Patients should also be advised when death becomes imminent. A health care practitioner must not assume that patients or family members understand the fatal nature of certain disorders (even metastatic cancer) or that they can recognize from a patient's appearance that death is near. Initial discussions should be honest and sensitive to the language and culture of patients and family members. The physician should not delay full disclosure too long because doing so can provide false hope and distort decision making¾for example, by reducing the opportunity to attend to spiritual and family concerns. Many patients and family members benefit from making plans based on their priorities and preferences for end-of-life treatments (see p. 3471).

Many patients ask whether the clinician can predict the time until death. Such estimates are ordinarily incorrect, both for slowly progressive disorders and for disorders in which death tends to come suddenly, without reliable warning signs (eg, heart failure, emphysema). For some cancers, recognizable warning signs may presage death by several weeks or months. In contrast, many people live for months or years in an unchanging but very fragile state of health. Clinicians tend to give inaccurately optimistic estimates and often are reluctant to predict life expectancy. Some models, such as the Acute Physiologic Assessment and Chronic Health Evaluation II (APACHE II) used to predict in-hospital mortality for ICU patients, are accurate for groups but not for individuals. If a clinician notes that a patient is sick enough that it would be "no surprise" for the patient to die in the coming year, the patient could die with the next complication, which could develop at any time. In such cases, clinicians, patients, and family members should consider prioritizing comfort and life closure over at least the burdensome elements in conventional medical treatment, as well as many preventive services. Family support, advance care planning, focus on relieving symptoms and maximizing function, and attention to spiritual issues are appropriate for patients who are in such fragile health. Clinicians lose many opportunities to help patients and their families live well and meaningfully by postponing the recognition of fragile health until death is clearly imminent.

At some point, virtually every dying patient should have a do-not-resuscitate (DNR) order or a do-not-attempt-resuscitation (DNAR) order written in the medical record. All clinicians in every setting should abide by that decision. Patients, family members, and the clinical team should also make and record other important decisions about medical care (eg, whether patients are to be hospitalized or use a ventilator). Often, implementing these decisions requires specific actions (eg, to have the needed drugs at home).

Family members should know about the changes that may occur in the patient's body shortly before and after death. They should not be surprised by irregular breathing, cool extremities, confusion, a purplish skin color, or somnolence in the last hours.

Some patients close to death develop noisy bronchial congestion or palatal relaxation, commonly known as the death rattle. If this symptom distresses family members, scopolamine or diphenhydramine (see p. 3485) can dry the patient's secretions and reduce the noise. Also, CNS irritability, with agitation and restlessness, may develop. If these symptoms, after review, are judged not to be caused by a drug or untreated disorder, they can be relieved by a sedative.

If a patient is expected to die at home, family members should rehearse whom to call (eg, physician, hospice nurse, clergy) and know whom not to call (eg, ambulance service, 911). They should also have help in obtaining legal advice and arranging burial or cremation services. Religious practices that may affect after-death care of the body should be discussed before death with the patient, family members, or both.

The last moments of a patient's life can have a lasting effect on family members, friends, and caregivers. The patient should be in an area that is peaceful, quiet, and physically comfortable. Any stains or tubes on the bed should be covered, and odors should be masked. Family members should be encouraged to maintain physical contact, such as holding hands, with the patient. If desired by the patient and family members, the presence of friends and clergy should be encouraged. Accommodation should be made for spiritual, cultural, ethnic, or personal rites of passage desired by the patient and family members.

When resuscitation is attempted, family members often appreciate being present during the resuscitation.

After Death Occurs

A physician, nurse, or other authorized person should pronounce the patient dead in a timely way to reduce the family's anxiety and uncertainty. The physician should complete the death certificate as soon as possible because funeral directors need a completed death certificate to make final arrangements. Even when death is expected, physicians may need to report the death to the coroner or police; knowledge of local law is important.

Telling family members about death, particularly unexpected death, requires effort. The physician should use clear language when informing the family that death has occurred (eg, using the word "died"). Euphemisms (eg, "passed on") should not be used because they are easily misinterpreted. If the family was not present during resuscitation, any events near death, including resuscitative efforts, should be described and the patient's absence of pain and distress mentioned (if true). It is usually wise to be sure that the closest kin is not alone. When told about death, particularly unexpected death, family members may be overwhelmed and unable to process information given to them or to formulate questions. Physicians, nurses, and other health care practitioners should respond to the psychologic needs of family members and provide appropriate counseling, a comfortable environment where family members can grieve together, and adequate time for them to be with the body. When feasible, it may help for a clinician to be with the family members as they enter the room with a newly dead body because that situation is so unfamiliar to most people. Sometimes it is best then to leave family members alone for a while, then return and offer explanations of treatments provided and give the family a chance to ask questions. Friends, neighbors, and clergy may be able to help provide support. Health care practitioners should be sensitive to cultural differences in behavior at the time of death.

The patient or family members and the clinical care team should discuss organ and tissue donation, if appropriate, before death or immediately after death; such discussions are ordinarily mandated by law. The attending physician should know how to arrange for organ donation and autopsy, even for patients who die at home or in a nursing home. Autopsy should be readily available regardless of where the death occurred, and decisions about autopsies can be made before death or just after death. A substantial minority of families welcome an autopsy to clear up uncertainties, and clinicians should appreciate the role of autopsy in quality assessment and improvement.

Hospice Care

· Emphasis on symptom relief and comfort care

· Decreased emphasis on prolonging life

· Little diagnostic testing

Hospice is a concept and program of care that is specifically designed to minimize suffering for dying patients and their family members. In the US, hospice is the only widely available comprehensive program to support very sick people at home. Philosophically, hospice programs forgo most diagnostic testing and life-prolonging treatments in favor of symptom relief, education of patients and family members about appropriate care, and comfort care.

Hospice is always interdisciplinary, relying on a core team of physicians, nurses, social workers, and attendants (eg, home health aides). Pharmacists, nutritionists, and therapists may also be involved. Hospice program personnel care for patients at home, in nursing homes, or in other care facilities. Although hospice program personnel do not usually care for patients in hospitals and rehabilitation centers, many hospitals are establishing palliative care programs to address the same care issues.

Hospice programs differ substantially in the services they provide and in treatments and devices they use. Whether a particular patient and family should participate in a given program depends on their needs and wishes, on their financial considerations, and on the skills and capacity of the local programs.

Hospice care can provide most necessary medical treatments. Nurses ordinarily oversee and implement the general plan of care, including drug use, O2 therapy, and IV lines or other special equipment. Nurses are usually the first ones to assess and address patient needs. They can usually adjust drug doses and help obtain any new drugs or treatments. Hospice physicians see patients when needed and share in shaping the plan of care. Social workers, chaplains, and volunteers help with interpersonal, spiritual, and financial issues. Bereavement counselors support survivors through the grieving process. Hospice plans of care help family members prepare for the challenges of facing the death of a loved one and dealing with the situation at the time of death, including their role and how to obtain needed help.

Most patients ill enough to require hospice also require some assistance with daily activities (eg, dressing, bathing, preparing food), and some may be completely dependent. Family members and friends often provide this care, but additional help from home health aides and volunteers may be necessary.

Medicare or insurance mostly pays a per diem rate that is intended to cover all hospice services, including a negotiated amount of help from home health aides, but only after a physician certifies that the patient has a fatal disorder with life expectancy < 6 mo.

Physicians may be reluctant to use hospice because a treatable condition could develop. However, this reluctance is not justified because many treatable conditions are within the scope of hospice care, and patients can leave hospice at any time and re-enroll later.

Other Concerns

Patient, family members, and clinicians should consider the following:

· They should plan for increasing disability.

· Obtaining payment for end-of-life care may be difficult.

· Emphasis should be on improving quality of end-of-life, not on hastening death.

Managing disability: Progressive disability often accompanies fatal illnesses. Patients may gradually become unable to tend to a house or an apartment, prepare food, handle financial matters, walk, or care for themselves. Most dying patients need help during their last weeks. Disability should be anticipated and appropriate preparations made (eg, choosing housing that is wheelchair-accessible and close to family caregivers). Services such as occupational or physical therapy and hospice care may help a patient remain at home, even when the disability progresses.

Financial concerns: Financial coverage for care of dying patients is problematic. Medicare regulations restrict payment for many aspects of supportive care. Not all patients qualify for hospice care, and physicians are often reluctant to certify the 6-mo prognosis required for hospice coverage. Sometimes the need for skilled nursing care can justify Medicare payment to a nursing home for short-term, complex medical and nursing needs for dying patients. One study has shown that one third of families deplete most of their savings when caring for a dying relative. The clinical care team should know the financial effects of choices and discuss these issues with patients or family members. Some attorneys specialize in elder care and can help patients and their family members deal with these issues.

Legal and ethical concerns: Health care practitioners should know local laws and institutional policy governing living wills, durable powers of attorney, and procedures for forgoing resuscitation and hospitalization. This knowledge helps them ensure that the patient's wishes guide care, even when the patient can no longer make decisions (see p. 3468).

Many health care practitioners worry that medical treatments intended to relieve pain or other suffering can hasten death, but this effect is actually quite uncommon. With thoughtful and skillful medical care, accusations of assisted suicide or other wrongdoing are almost nonexistent. Even if dyspnea requires doses of opioids that may also hasten death, the resulting death is not considered wrongful.

However, actually assisting with suicide (eg, by directly providing a dying patient with lethal drugs and instructions for using them) could be grounds for prosecution in most states but is authorized under specific conditions in Oregon. Charges of homicide are plausible if the patient's interests are not carefully advocated, if the patient lacks capacity or is severely functionally impaired when decisions are made, if decisions and their rationales are not documented, or if the prosecutor's electoral base is expected to approve of such charges. Physicians who manage symptoms vigorously and forgo life-sustaining treatment need to document decision making carefully, provide care in a reputable setting, and discuss these issues willingly, honestly, and sensitively with patients, other practitioners, and the public. A physician should not provide an intervention that is conventionally considered a means of homicide (eg, lethal injection) even if the intention is to relieve suffering.

Symptom Control in the Dying

Patients need reassurance that symptoms will not be overwhelming.

Physical and mental distress is common while living with fatal illness, but much distress can be prevented or relieved. Patients commonly fear protracted and unrelieved suffering. Knowing they can count on living reasonably comfortably enables patients to focus on living as fully as possible and on confronting the issues presented by fragile health and the approach of death.

Symptom control should be based on etiology when possible. For example, vomiting due to hypercalcemia requires different treatment from that due to elevated intracranial pressure. However, diagnosing the cause of a symptom may be inappropriate if testing is burdensome or risky or if specific treatment (eg, major surgery) has already been ruled out. For dying patients, comfort measures, including nonspecific treatment or a short sequential trial of empiric treatments, are often better than an exhaustive diagnostic evaluation.

Because one symptom can have many causes and may respond differently to treatment as the patient's condition deteriorates, the clinical team must monitor and reevaluate the situation frequently. Drug overdosage or under-dosage is harmful, and both become more likely as worsening physiology causes changes in drug disposition.

When survival is likely to be brief, symptom severity frequently dictates initial treatment. Sometimes the fear that a symptom will worsen can be more crippling than the symptom itself, and reassurance that effective treatment is available may be all a patient needs. When a symptom is quite severe or the diagnostic alternatives do not affect treatment, the physician should quickly relieve suffering by treating the symptom.

Pain

About half of patients dying of cancer have severe pain. Yet, only half of these patients receive reliable pain relief. Many patients dying of organ system failure and dementia also have severe pain. Sometimes pain can be controlled but persists because patients, family members, and physicians have misconceptions about pain and the drugs (especially opioids) that can control it, resulting in significant underdosing.

Patients perceive pain differently, depending partly on whether other factors (eg, fatigue, insomnia, anxiety, depression, nausea) are present. Analgesic choice depends largely on pain intensity and cause, which can be determined only by talking with and observing patients. Patients and physicians must recognize that all pain can be relieved by an appropriately potent drug at sufficient dosage, although aggressive treatment may also cause sedation or confusion. Commonly used drugs are aspirin, acetaminophen, or NSAIDs for mild pain; oxycodone for moderate pain; and hydromorphone, morphine, or fentanyl for severe pain (see p. 1623).

In dying patients, oral opioid therapy is most convenient and cost-effective. Rectal opioid therapy provides more uneven absorption; however, 1st-pass effect is often minimal. Morphine suppositories or pills may be given rectally at the same dosage used for oral forms and then titrated as needed. IV or sc opioid therapy is better than IM injections, which are painful and result in variable absorption. Long-acting opioids are best for long-lasting pain. When giving opioids, the physician should prescribe them in adequate dosage and on a continuous basis to prevent pain. Unreasonable concerns by the public and by health care practitioners about addiction often tragically limit appropriate use of opioids. Pharmacologic dependence may result from regular use but causes no problems in dying patients except the need to avoid inadvertent withdrawal. Addictive behaviors are rare and usually easy to control.

Adverse effects of opioids include nausea, sedation, confusion, constipation, and respiratory depression. Constipation should be treated prophylactically (see p. 3486). Patients usually develop substantial tolerance to the respiratory depressant and sedative effects of morphine but have much less tolerance for the analgesic and constipating effects. Opioids may also cause myoclonus, agitated delirium, hyperalgesia, and seizures. These effects may result from accumulation of toxic metabolites and usually resolve when another opioid is substituted. Patients with these adverse effects and serious pain often warrant consultation with a palliative care specialist or pain specialist.

When a stable opioid dose becomes inadequate, increasing the dose by 1 1/2 to 2 times the previous dose is reasonable. Usually, serious respiratory depression does not occur unless the new dose is much more than twice the previously tolerated dose. Clinicians often are unfamiliar and thus uncomfortable with such large dosage increases. Increasing the dose over 1 to 2 h with constant observation and having opioid antagonists immediately available can overcome that reluctance.

Use of adjunctive drugs for pain control often increases comfort and reduces the opioid dosage and consequent adverse effects. Corticosteroids can reduce the pain of inflammation and swelling. Tricyclic antidepressants (eg, nortriptyline, doxepin) help manage neuropathic pain (see p. 1632); doxepin can provide bedtime sedation as well. Gabapentin 300 to 1200 mg po tid helps relieve neuropathic pain. Methadone is effective for refractory or neuropathic pain; however, its kinetics vary and it requires close monitoring. Benzodiazepines are useful for patients whose pain is worsened by anxiety.

For severe localized pain, regional nerve blocks given by an anesthesiologist experienced in pain management may provide relief with few adverse effects. Various nerve-blocking techniques may be used. Indwelling epidural or intrathecal catheters can provide continuous infusion of analgesics, often mixed with anesthetic drugs.

Pain-modification techniques (eg, guided mental imagery, hypnosis, acupuncture, relaxation, biofeedback) help some patients (see p. 3417). Counseling for stress and anxiety may be very helpful, as may spiritual support from a chaplain.

Dyspnea

Dyspnea is one of the most feared symptoms and is extremely frightening to dying patients.

Quickly reversible causes should be treated specifically. For example, placing a chest tube for tension pneumothorax or doing thoracentesis for a pleural effusion provides quick and definitive relief. However, if death is imminent or a definitive treatment for the cause of dyspnea is not available, proper symptomatic treatment assures patients they will be comfortable, regardless of the cause.

As a first intervention, O2 helps correct hypoxemia. Even when its oxygenating benefit is no longer certain, O2 may continue to be psychologically comforting to patients and family members. O2 therapy is most comfortable by nasal cannula, so this route is preferred unless higher concentrations are critically important.

Morphine 2 to 10 mg sublingually or 2 to 4 mg sc q 2 to 4 h prn helps reduce breathlessness in an opioid-naive patient. Such a low dosage of morphine may blunt the medullary response to CO2 retention or O2 decline, reducing dyspnea and decreasing anxiety without causing harmful respiratory depression. If patients are already taking opioids for pain, dosages that relieve dyspnea must often be more than double the patient's usual dosages.

Airway congestion is best managed with drugs that dry secretions (eg, topical scopolamine gel 0.25 to 0.5 mg q 8 to 12 h applied to the skin behind the ear or on the chest, hyoscyamine 0.125 mg sublingually q 8 h, diphenhydramine 10 to 50 mg IM q 4 to 6 h prn).

Nebulized saline may help patients with viscous secretions. Nebulized albuterol and oral or injectable corticosteroids may relieve bronchospasm and bronchial inflammation.

Benzodiazepines often help relieve anxiety associated with dyspnea and with the fear of a return of dyspnea. Useful nondrug measures include providing a cool draft from an open window or fan and maintaining a calming presence.

Anorexia

Anorexia and marked weight loss are common among dying patients. For family members, accepting the patient's poor oral intake is often difficult because it means accepting that the patient is dying. Patients should be offered their favorite foods whenever possible. Conditions that may cause poor intake and that can be easily treated¾gastritis, constipation, toothache, oral candidiasis, pain, and nausea¾should be treated. Some patients benefit from appetite stimulants such as oral corticosteroids (dexamethasone 2 to 8 mg bid or prednisone 10 to 30 mg once/day) or megestrol 160 to 480 mg po once/day. However, if a patient is close to death, family members should understand that neither food nor hydration is necessary to maintain the patient's comfort.

IV fluids, TPN, and tube feedings do not prolong the life of dying patients. All of these measures seem to increase discomfort and may hasten death. Pulmonary congestion and pneumonia are more common among dying patients who are fed artificially. Artificial hydration may worsen edema and pain associated with inflammation. Conversely, dehydration and ketosis due to caloric restriction correlate with analgesic effects and absence of discomfort. The only reported discomfort due to dehydration near death is xerostomia, which is easily relieved with oral swabs or ice chips.

Family members should be gently told that the patient is dying and that food does not help the patient's strength nor substantially delay death; they should be reassured that the patient does not suffer from having little or no intake. Having family members and friends take on specific tasks (eg, providing favorite foods, small portions, and foods that are easy to swallow) provides other ways to show caring and love, which can help family members.

Even debilitated and cachectic patients may live for several weeks with no food and minimal hydration. Family members should understand that stopping fluids does not result in the patient's immediate death and ordinarily does not hasten death. Supportive care, including good oral hygiene, is imperative for patient comfort during this time.

Nausea and Vomiting

Many seriously ill patients experience nausea, frequently without vomiting. Nausea may arise with GI problems (eg, constipation, gastritis), metabolic abnormalities (eg, hypercalcemia, uremia), drug adverse effects, increased intracranial pressure secondary to cerebral cancer, and psychosocial stress. When possible, treatment should match the likely cause¾eg, stopping NSAIDs, treating gastritis with H2 blockers, and trying corticosteroids for patients with known or suspected brain metastases. If nausea is due to gastric distention and reflux, metoclopramide (eg, 10 to 20 mg po or sc qid prn or given on a scheduled basis) is useful because it increases gastric tone and contractions while relaxing the pyloric sphincter.

Patients with no specific cause of nausea may benefit from treatment with a phenothiazine (eg, promethazine 25 mg po qid; prochlorperazine 10 mg po before meals or, for patients who cannot take oral drugs, 25 mg rectally bid). Anticholinergic drugs such as scopolamine and the antihistamines meclizine and diphenhydramine prevent recurrent nausea in many patients. Combining lower doses of the previously mentioned drugs often improves efficacy. Second-line drugs for intractable nausea include haloperidol (started at 1 mg po or sc q 6 to 8 h, then titrated to as much as 15 mg/day). The 5-HT3 antagonists ondansetron and granisetron often dramatically relieve chemotherapy-induced nausea. Cost often makes these antagonists 2nd-line drugs for more complex causes of nausea in dying patients.

Nausea and pain due to intestinal obstruction are common among patients with widespread abdominal cancer. Generally, IV fluids and nasogastric suction are more burdensome than useful. Symptoms of nausea, pain, and intestinal spasm respond to hyoscyamine (0.125 to 0.25 mg q 4 h sublingually or sc), scopolamine (1.5 mg topically), morphine (given sc or rectally), or any of the other previously mentioned antiemetics. Octreotide 150 mg sc or IV q 12 h inhibits GI secretions and dramatically reduces nausea and painful distention. Given with antiemetics, octreotide usually eliminates the need for nasogastric suctioning. Corticosteroids (eg, dexamethasone 4 to 6 mg IV, IM, or rectally tid) may decrease obstructive inflammation at the tumor site and temporarily relieve the obstruction. IV fluids may exacerbate obstructive edema.

Constipation

Constipation is common among dying patients because of inactivity, use of opioids and drugs with anticholinergic effects, and decreased intake of fluids and dietary fiber. Regular bowel movements are essential to the comfort of dying patients, at least until the last day or two of life. Laxatives help prevent fecal impaction, especially in patients receiving opioids. Monitoring bowel function regularly is essential. Most patients do well on a twice/day regimen of stool softener (eg, docusate) plus a mild stimulant laxative (eg, casanthranol, senna). If stimulant laxatives cause cramping discomfort, patients may respond to increased doses of docusate alone or an osmotic laxative, such as lactulose or sorbitol started at 15 to 30 mL po bid and titrated to effect.

Soft fecal impaction may be treated with a bisacodyl suppository or saline enema. For a hard fecal impaction, a mineral oil enema may be given, possibly with an oral benzodiazepine (eg, lorazepam) or an analgesic, followed by digital disimpaction. After disimpaction, patients should be placed on a more aggressive bowel regimen to avoid recurrence.

Pressure Ulcers

Many dying patients are immobile, poorly nourished, incontinent, and cachectic and thus are at risk of pressure ulcers (see also p. 736). Prevention requires relieving pressure by rotating the patient or shifting the patient's weight every 2 h; a specialized mattress or continuously inflated air-suspension bed may also help. Incontinent patients should be kept as dry as possible. Generally, use of an indwelling catheter, with its inconvenience and risk of infection, is justified only when bedding changes cause pain or when patients or family members strongly prefer it.

Confusion

Mental changes that can accompany the terminal stage of a disorder may distress patients and family members; however, patients are often unaware of them. Confusion (delirium) is common; causes include drugs, hypoxia, metabolic disturbances, and intrinsic CNS disorders. If the cause can be determined, simple treatment may enable patients to communicate more meaningfully with family members and friends. Patients who are comfortable and less aware of their surroundings may do better with no treatment. When possible, the physician should ascertain the preferences of patients and family members and use them to guide treatment.

Simple causes of confusion and agitation should be sought. Agitation and restlessness often result from urinary retention, which resolves promptly with urinary catheterization. Confusion in debilitated patients is worsened by sleep deprivation. Agitated patients may benefit from benzodiazepines; however, benzodiazepines may also cause confusion. Poorly controlled pain may cause insomnia or agitation. If pain has been appropriately controlled, a nighttime sedative may help.

Family members and visitors may help lessen confusion by frequently holding the patient's hand and repeating where the patient is and what is happening. Patients with severe terminal agitation resistant to other measures may respond best to barbiturates; family members should be made aware that when near death, patients do not usually wake up much after starting these drugs. Pentobarbital, a rapid-onset, short-acting barbiturate, may be given as 100 to 200 mg IM q 4 h prn. Phenobarbital, which is longer-acting, may be given po, sc, or rectally. Midazolam, a short-acting benzodiazepine, also is often effective.

Depression

Most dying patients experience some depressive symptoms. Providing psychologic support and allowing patients to express concerns and feelings are usually the best approach. A skilled social worker, physician, nurse, or chaplain can help with these concerns.

A trial of antidepressants is often appropriate for patients who have persistent, clinically significant depression. SSRIs are useful for patients likely to live beyond the 4 wk usually needed for onset of the antidepressant effect. Depressed patients with anxiety and insomnia may benefit from a sedating tricyclic antidepressant given at bedtime. For patients who are withdrawn or who have vegetative signs (see p. 1666), methylphenidate may be started at 2.5 mg po once/day and increased to 2.5 to 5 mg bid (given at breakfast and lunch) as necessary. Methylphenidate (same dosage) can provide a few days or weeks of increased energy for patients who are fatigued or somnolent because of analgesics. Methylphenidate has a rapid effect but may precipitate agitation. Although its duration of action is short, adverse effects are also short-lived.

Stress

A few people approach death peacefully, but more patients and family members experience stressful periods. Death is particularly stressful when interpersonal conflicts keep patients and family members from sharing their last moments together in peace. Such conflicts can lead to excessive guilt or inability to grieve in survivors and can cause anguish in patients. A family member who is caring for a dying relative at home may experience physical and emotional stress. Usually, stress in patients and family members responds to compassion, information, counseling, and sometimes brief psychotherapy. Community services may be available to help relieve care-giver burden. Sedatives should be used sparingly and briefly.

When a partner dies, the survivor may be overwhelmed by having to make decisions about legal or financial matters or household management. For an elderly couple, the death of one may reveal the survivor's cognitive impairment, for which the deceased partner had compensated. The clinical team should identify such high-risk situations so that they can mobilize the resources needed to prevent undue suffering and dysfunction.

Grief

Grieving is a normal process that usually begins before an anticipated death. For patients, grief often starts with denial caused by fears about loss of control, separation, suffering, an uncertain future, and loss of self. Traditionally, the stages after grief were thought to occur in the following order: denial, anger, bargaining, depression, and acceptance. However, the stages that patients go through and their order of occurrence vary. Members of the clinical team can help patients accept their prognosis by listening to their concerns, helping them understand that they can control important elements of their life, explaining how the disorder will worsen and how death will come, and assuring them that their physical symptoms will be controlled. If grief is still very severe or causes psychosis or suicidal ideation or if the patient has a previous severe mental disorder, referral for professional evaluation and grief counseling may be needed.

Family members may need support in expressing grief. Any clinical team member who has come to know the patient and family members can help them through this process and direct them to professional services if needed. Physicians and other clinical team members need to develop regular procedures that ensure follow-up of grieving family members.

Reference

1. http://www.nejm.org/doi/full/10.1056/NEJMra1108646?query=TOC#t=article

From a legal standpoint in many countries, an individual is considered dead when there is complete and irreversible cessation of brain function. Many individual cells and tissues in a legally dead individual remain viable for some time after death, however, and constitute a major source of organs for transplantation.

Study Question

A 72-year-old woman has stage IV ovarian cancer with diffuse peritoneal studding. She is developing increasing pain in her abdomen and is admitted to the hospital for pain control. She previously was treated with oxycodone 10 mg orally every 6 hours as needed. Upon admission, she is initiated on morphine intravenously via patient-controlled analgesia. During the first 48 hours of her hospitalization, she received an average daily dose of morphine of 90 mg and reports adequate pain control unless she is walking. What is the most appropriate opioid regimen for transitioning this patient to oral pain medication?

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	Sustained-Release Morphine	Immediate-Release Morphine
A.	None	15 mg every 4 hours as needed
B.	45 mg twice daily	5 mg every 4 hours as needed
C.	45 mg twice daily	15 mg every 4 hours as needed
D.	90 mg twice daily	15 mg every 4 hours as needed
E.	90 mg three time daily	15 mg every 4 hours as needed

A

B

C

D

E

Next Question

You will be able to view all answers at the end of your quiz.

The correct answer is C. You answered B.

Explanation:

The answer is C.(Chap. 10) A primary goal of palliative care medicine is to control pain in patients who are terminally ill. Surveys have found that 36%–90% of individuals with advanced cancer have substantial pain, and an individualized treatment plan is necessary for each patient. For individuals with continuous pain, opioid analgesics should be administered on a scheduled basis around the clock at an interval based on the half-life of the medication chosen. Extended- release preparations are frequently used due to their longer half-lives. However, it is inappropriate to start immediately with an extended-release preparation. In this scenario, the patient was treated with a continuous intravenous infusion via patient-controlled analgesia for 48 hours to determine her baseline opioid needs. The average daily dose of morphine required was 90 mg. This total dose should be administered in divided doses two or three times daily (either 45 mg twice daily or 30 mg three times daily). In addition, an immediate-release preparation should be available for administration for breakthrough pain. The recommended dose of the immediate release preparation is 20% of the baseline dose. In this case, the dose would be 18 mg and could be given as either 15 or 20 mg four times daily as needed.