End-of-Life Care: Symptom Management (Part 3)
WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers.
This course is designed to bridge the gap in knowledge of palliative care by providing an overview of the concept of palliative care and a discussion of the benefits and barriers to optimum palliative care at the end of life. Central to this discussion is an emphasis on the importance of talking to patients about the value of palliative care, of clearly presenting the prognosis and appropriate treatment options and goals, and of ensuring that advance planning is completed. The majority of the course focuses on the assessment and management of the most common end-of-life symptoms, with particular attention to pain, the most prevalent, as well as the most distressing, physical symptom. Psychosocial and spiritual needs of the patient and family are also discussed. Palliative care presents unique challenges for some patient populations, most notably older patients, children/adolescents, and patients receiving critical care. An overview of the most important issues specific to these settings is provided. Because palliative care focuses on the physical and psychosocial needs of the patient and his or her family, the patient's and family's perspectives are vital considerations in developing high-quality palliative care programs. An early survey of patients with life-limiting diseases identified five priorities for palliative care: receiving adequate treatment for pain and other symptoms, avoiding inappropriate prolongation of life, obtaining a sense of control, relieving burden, and strengthening relationships with loved ones. Medicare reimbursement for hospice care became available when the Medicare Hospice Benefit was established in 1982, and reimbursement through private health insurances soon followed.
The purpose of this document is the best management of symptoms in end-of-life situations. Before initiating a symptom management approach, pharmacologic or non-pharmacologic, clinicians should allow patients time to express their thoughts and concerns. This simple step has led to better outcomes and when carried out in a supportive environment, has been almost as effective as more advanced techniques. Continual reassessment of symptoms is necessary to ensure adequate management of symptoms. It may be helpful for patients or a family member to keep a pain or symptom diary to note which measures have or have not provided relief and the duration of relief. This information will help clinicians deter¬mine the efficacy of specific therapeutic options and modify the treatment plan as necessary. The discussion of interventions in this document focuses on the care of adults. This document discusses the symptoms: Psychosocial Care; Anxiety; Depression, Spiritual Needs; Imminent Death and Physician-Assisted Suicide.
The natural initial reaction to a limited life expectancy is emotional, and patients as well as their families experience a wide range of emotions, including disbelief, anger, fear, and sadness. Over time, these emotions broaden; patients may feel isolated and lonely, anxious about the burden on their family, or hopeless. Family members may have guilt about their own well-being, anxiety about the future, and grief about the loss of their loved one. Practical issues such as the cost of care and loss of income from the patient and/or caregiver can add substantially to the feelings of stress.
The prevalence of psychologic suffering is high during the last year of life, and addressing this aspect of care is integral to the patient's overall comfort and quality of life. Anxiety and depression are the most common psychologic symptoms at the end of life, yet they are among the most under-diagnosed and untreated symptoms (1). Psychologic suffering exacerbates pain and other symptoms, limits the patient's capacity for pleasurable activities, and causes distress for both the patient and the family (2).
The word "distress" has become standard to describe the psychologic suffering experienced by patients with life-limiting disease. The National Comprehensive Cancer Network (NCCN) notes that the word "distress" is more acceptable and is associated with less stigma than words such as "psychosocial" or "emotional" (2). In its guidelines on distress management, the NCCN defines distress as existing "along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis" (3). According to a study of patients in a palliative care program, the answers to the question "What bothers you most?" included (3):
Patients at increased risk of distress include individuals with a history of psychiatric disorder, substance abuse, or depression/suicide attempt; with cognitive impairment or communication barriers; with severe comorbid conditions; and with spiritual/religious concerns. Other factors that predispose a patient to distress include rapidly progressing disease, unrelieved pain, and uncontrolled symptoms. Women, younger individuals, and individuals with young children are also at increased risk. Gay and lesbian patients with life-limiting diseases often have distinct sources of suffering. These patients may be disenfranchised from their families or have been subjected to social stigma, leading to fears of abandonment and isolation. In some instances, spiritual crises may be the result of guilt and shame from past behaviors. Many patients with human immunodeficiency virus/ acquired immune deficiency syndrome (HIV/AIDS) have suffered through the loss of loved ones to the same disease, some of whom may have been part of the individual's defined family and network of social support (4).
As with physical symptoms, assessment of distress and the psychosocial and spiritual well-being of the patient must be ongoing, as changes occur over time. In addition, worsening symptoms and disease progression can affect patients' coping mechanisms. One study found significant correlations between the will to live and existential, psychologic, and social sources of distress. In that study, hopelessness, burden to others, and dignity were the variables with the most influence (3). Other studies have consistently shown that psychosocial suffering has a stronger association than pain with a desire to hasten death (5),(6).
How a patient responds to his or her disease and care is strongly influenced by attitudes and values learned through family interactions, and social workers should evaluate the patient and family to assess psychosocial as well as practical problems and recommend and/or carry out interventions. For many patients, the primary concern about their illness is its impact on the family. The need for palliative care raises issues regarding power, structure, and roles among the patient and his or her family. The impact of a life-limiting disease and the ensuing care threatens the structure and integrity of the family, as family roles are reassigned, the rules of daily living are altered, and methods of problem-solving are revised. Families vary in their ability to adapt to such restructuring, and dysfunction can result from either limited or excessive adaptation. At one end of this spectrum, family members have difficulty breaking away from coping mechanisms, even though they are ineffective. At the other end of the spectrum, family members continually try new coping strategies to meet each crisis, resulting in chaos (7). Both types of dysfunction can lead to increased demands on the healthcare team and can interfere with the delivery of appropriate care.
FAMILY-CENTERED PSYCHOSOCIAL NEEDS
Adequate psychosocial support is also needed for the patient's family. The structure of families varies widely, and it is important to note that what constitutes a family is defined by the patient. It is essential for the healthcare team to talk to patients during the initial assessment about who provides support, with whom they wish to share information, and who should be involved in planning care and decision making (1). For some patients, friends provide the support network when families are not near or the patient is disenfranchised from his or her family. Social workers have a prominent role in helping these patients overcome such barriers as discrimination and legal and financial issues, as well as ensuring appropriate support for grieving partners who may be disenfranchised (8).
Family caregivers can become overwhelmed with added responsibilities. Often, the caregiver is a spouse who is older and may also have illnesses. In addition, children and teenagers are frequently forgotten, but addressing their concerns and needs is essential for their psychologic well-being and appropriate grieving. Young children will realize that the family structure has been disrupted. They should be encouraged to ask questions, and they usually need time to interpret answers. Adolescence is a challenging time in itself, and dealing with the illness and loss of a parent or close family member may result in aggressive behavior, isolation, or sexuality. Frequent evaluation of family members' coping strategies, moods, and behaviors can help to determine if early referral for individual counseling or family therapy is necessary. Support should be provided to ensure that the patient and family has access to resources to help with finances, that the home environment is safe, that caregivers are available, and that adequate transportation is available.
Family roles are also important to understand, and these roles are strongly influenced by culture. Many cultures highly value family, with strong family ties across many generations. Patients from such cultures will often have many visitors at one time. The palliative care team should accommodate such visits when possible. In addition, family hierarchy may dictate behavior of family caregivers. For example, in traditional Vietnamese families, a female member of the family is expected to stay at the bedside of the patient for comfort and support (9). In Asian families, elders are revered and a young person cannot tell an older person what to do. This may make it difficult for a healthcare professional who is younger than the patient. Patients and families who adhere to Native American cultures have unique traditions and rituals that should be respected (2). All members of the healthcare team should become familiar with the cultural context of their patients and provide resources from within the cultural community if possible. A bilingual healthcare worker can provide an important link to a community.
Any patient with clinical evidence of moderate to severe distress should be assessed by a primary oncology team (including an oncologist, nurse, and social worker). Unrelieved physical symptoms should be treated according to disease-specific or supportive care guidelines. Clinical evidence of mild distress should signal the need for the primary oncology team to share relevant patient resources. Where indicated, referrals should be made to mental health services, social work and counseling services, or pastoral services. The standard requires that the psychosocial domain be a component of routine care by 2015 (36). Furthermore, the International Psycho-oncology Society (IPOS) established an international quality standard to integrate the psychosocial domain into routine care. Along with science, empathy – the humanistic dimension – remains critical.
Anxiety is a feeling of fear, apprehension, and dread. The patient feels uneasy, insecure, and uncertain about the future. Often, the patient is not able to identify the source of anxiety, but it can be related to any number of physical, psychologic, social, spiritual, or practical issues common during the end of life.
When pharmacologic management is deemed necessary, benzodiazepines are generally preferred, and administration on an as-needed basis is usually sufficient (11). Neuroleptics and tricyclic antidepressants may also be effective (See table below). For all medications, the initial dose should be low and subsequently titrated to produce the desired effect within the level of tolerance. Benzodiazepines should be given with caution in older patients, as these drugs may harm memory or cause confusion and agitation in patients who have cognitive impairment (5).
Pharmacologic Management of Anxiety
Depression is linked to many other symptoms, especially pain, and is a primary source of suffering. Depression in patients with life-limiting disease is a challenge to identify, as feelings of sadness, helplessness, and hopelessness are a typical reaction to the situation (13). Depression is more likely when sadness and/or hopelessness is overwhelming or pervasive and is accompanied by a sense of despair (13). Early diagnosis is essential for effective treatment and relief of other symptoms.
A diagnosis of depression requires the presence of at least five depression-related symptoms within the same 2-week period, and the symptoms must represent a change from a previous level of functioning(13). A simple screening tool that has been found to be effective is to ask the patient, "Are you depressed?" or, "Do you feel depressed most of the time?" (17). The physician should also discuss the patient's mood and behavior with other members of the healthcare team and family to help determine a diagnosis. Patients who have thoughts of suicide must be assessed carefully. The physician should differentiate between depression and a desire to hasten death because of uncontrolled symptoms. Psychologic counseling should be sought, as well as measures to enhance the management of symptoms.
The effective management of depression requires a multimodal approach, incorporating supportive psychotherapy, cognitive strategies, behavioral techniques, and antidepressant medications (19),(20),(21). Patients with depression should be referred to mental health services for evaluation, and resultant approaches may include formal therapy sessions with psychiatrists or psychologists or counseling from social workers or pastoral advisors. In addition, physicians can help by having discussions with the patient to enhance his or her understanding of the disease, treatments, and outcomes, and to explore expectations, fears, and goals. Behavioral interventions, such as relaxation techniques, distraction therapy, and pleasant imagery have been effective for patients with mild-to-moderate depression (20).
Strong evidence supports the use of tricyclic antidepressants or selective serotonin reuptake inhibitors (SSRIs), along with psychosocial interventions, for the management of depression in patients with cancer. Evidence to support the use of specific pharmacologic agents to treat depression in patients with non-cancer diagnoses is not as strong, but psychostimulants may also be helpful (21). The choice of medication depends on the time available for treatment. The most immediate effect (within days) is achieved with a rapid-acting psychostimulant; longer times to therapeutic effect are associated with SSRIs (2 to 4 weeks) and tricyclic antidepressants (3 to 6 weeks).
Pharmacologic Management of Depression
According to the National Consensus Project for Quality Palliative Care, whenever possible, a standardized instrument should be used to assess and identify religious or spiritual/existential background, preferences, and related beliefs, rituals, and practices of the patient and family.
Spirituality is unique to each person. It is founded in cultural, religious, and family traditions and is modified by life experiences. Spirituality is considered to be separate from religious faith, and many surveys have shown that spirituality or religion is an integral component of people's lives (22). Spirituality also plays a significant role in health and illness. Studies have shown spirituality to be the greatest factor in protecting against end-of-life distress and to have a positive effect on a patient's sense of meaning (23). Thus, a spiritual assessment and spiritual care to address individual needs are essential components of the multidimensional evaluation of the patient and family (24).
A life-limiting disease will lead patients to ask questions that may give way to spiritual conflicts, such as "Why would God let me suffer this way?" Patients may also carry out life review in search of meaning for their illness; some may view their illness as punishment for past "sins." Left unanswered, spiritual questions and concerns lead to spiritual distress and suffering, which can cause or exacerbate pain and other physical and psychosocial symptoms. It then becomes critical for the healthcare team to facilitate pastoral services to address patients' spiritual concerns (25). In general, the spiritual and existential concerns of patients at the end of life relate to four areas: the past, the present, the future, and religion.
Spiritual and Existential Concerns of Patients at the End-of-Life
The need for spirituality at the end of life is heightened, and patients will search for meaning as a way to cope with emotional and existential suffering. Spirituality helps patients cope with dying through hope. At the time of diagnosis, patients hope for cure, but over time, the object of hope changes and the patient may hope for enough time to achieve important goals, personal growth, reconciliation with loved ones, and a peaceful death (24). Spirituality can also help a patient gain a sense of control, acceptance, and strength. As a result, greater spiritual well-being has been associated with decreased rates of anxiety and depression among people with advanced disease (25).
There has been a growing emphasis on the need for physicians to discuss spirituality with their patients (26). A spiritual history should be obtained to elicit answers to such questions as:
One recommended mnemonic for the components of a spiritual history is SPIRIT: spiritual belief system; personal spirituality; integration with a spiritual community; ritualized practices and restrictions; implications for medical care; and terminal events planning (25).
Although spiritual care is an essential component of palliative care, what patients and families perceive to be spiritual care and how it should be delivered have not been well-defined (26). Patients and families have found spiritual comfort with friends and family, clergy and other pastoral care providers, and healthcare professionals (26). Among healthcare professionals, barriers to providing spiritual care are time; social, religious, or cultural discordance; and lack of privacy and care continuity.
IMMINENT DEATH AND LOSS
In the last days, the goals of the healthcare team are to ensure a peaceful death for the patient and to support the family during the dying process and throughout grief and mourning. The focus for the patient is management of symptoms and emotional and spiritual ease, and the focus for the family is education to prepare them for the dying process.
During the last days, all care should be directed at comfort, and the NCCN has listed several interventions for imminently dying patients. The physician should minimize the number of medications by reassessing the need for each one. The symptoms that occur most commonly during the last days are pain, noisy breathing, dyspnea, and delirium, and medications to manage these symptoms should be maintained or initiated. In addition, medication may be required to reduce the risk of seizures. Medications should be prescribed for the least invasive route of administration (oral or buccal mucosa), but patients may lose the ability to swallow, making a subcutaneous, transdermal, or intravenous route necessary.
Interventions for patients who are imminently dying:
Treatment of pain should continue, and knowledge of opioid pharmacology becomes critical during the last hours of life. The metabolites of morphine and some other opioids remain active until they are cleared through the kidneys. If urine output stops, alternative opioids, such as fentanyl or methadone, should be considered, as they have inactive metabolites (27).
Anticholinergic medications can eliminate the so-called "death rattle" brought on by the build-up of secretions when the gag reflex is lost or swallowing is difficult. Specific drugs recommended include scopolamine, glycopyrrolate, hyoscyamine, and atropine (27). (Table see below) For patients with advanced kidney disease, the dose of glycopyrrolate should be reduced 50% (because evidence indicates that the drug accumulates in renal impairment) and hyoscine butylbromide should not be used (because of a risk of excessive drowsiness or paradoxical agitation) (28). Some evidence suggests that treatment is more effective when given earlier; however, if the patient is alert, the dryness of the mouth and throat caused by these medications can be distressful. Repositioning the patient to one side or the other or in the semiprone position may reduce the sound. Oropharyngeal suctioning is not only often ineffective but also may disturb the patient or cause further distress for the family. Therefore, it is not recommended.
Treatment of Excessive Respiratory Secretions causing “Death Rattle”
Terminal delirium should be treated aggressively at its first signs (restlessness, moaning, increasing confusion, and drowsiness). Haloperidol is frequently the first choice for its relatively quick action (28). Other drugs may include olanzapine, chlorpromazine, levomepromazine, and benzodiazepines (29). For terminal delirium associated with agitation, benzodiazepines, including clonazepam, midazolam, diazepam, and lorazepam may be helpful (30). Depending on which drug is used, administration may intravenous, subcutaneous, or rectal, and the dose can be titrated until effective. Seizures at the end of life may be managed with high doses of benzodiazepines. Other antiepileptics such as phenytoin (administered intravenously), fosphenytoin (administered subcutaneously), or phenobarbital (60–120 mg rectally, intravenously, or intramuscularly every 10 to 20 minutes as needed) may become necessary until control is established. A calm and peaceful environment should be maintained for the patient. Family and spiritual leaders should be allowed to carry out traditional rites and rituals associated with death.
Palliative sedation may be considered when an imminently dying patient is experiencing suffering (physical, psychologic, and/or spiritual) that is refractory to the best palliative care efforts. Terminal restlessness and dyspnea have been the most common indications for palliative sedation, and thiopental and midazolam are the typical sedatives used (29),(30). For patients who have advanced kidney disease, midazolam is recommended, but the dose should be reduced because more unbound drug becomes available. Before beginning palliative sedation, the clinician should consult with a psychiatrist and pastoral services (if appropriate) and talk to the patient, family members, and other members of the healthcare team about the medical, emotional, and ethical issues surrounding the decision (31). Formal informed consent should be obtained from the patient or from the healthcare proxy.
Physician-assisted suicide, or hastened death, is defined as active euthanasia (direct administration of a lethal agent with a merciful intent) or assisted suicide (aiding a patient in ending his or her life at the request of the patient) (32). The following are not considered to be physician-assisted suicide: carrying out a patient's wishes to refuse treatment, withdrawal of treatment, and the use of high-dose opioids with the intent to relieve pain. The American Medical Association Code of Ethics explicitly states, "Physician-assisted suicide is fundamentally incompatible with the physician's role as healer, would be difficult or impossible to control, and would pose serious societal risks." Laws permitting physician-assisted dying in the United States restrict it to dying patients who cannot be healed and who desire to hasten their deaths because of intractable suffering. In such cases, a physician’s overriding ethical obligation should shift from healing to relieving suffering, in accord with the patient’s wishes (35). There are compelling cases for legalizing assisted dying and physicians should think about their patient’s needs according to their state laws.
In July 1997 the US Supreme Court unanimously ruled that terminally ill patients do not have a constitutional right to physician-assisted suicide, but did not bar states from legalizing the practice (34). In several US states, the legalization of ending life of terminally ill patients has become a question for voters to decide in public referenda. The Massachusetts "Death with Dignity" Initiative appeared on the November 6, 2012 general election ballot in the state of Massachusetts as an indirect initiated state statute. The measure that would have allowed physician-assisted suicide for terminally ill patients was narrowly defeated. The Massachusetts measure was modeled on that of Oregon, which requires patients to request lethal medication from their doctors, both verbally and in writing, before they would be allowed to not only receive the dose – but administer it themselves.
Euthanasia, where a physician or another third party administers a lethal medication, is illegal in every state of US. Assisted-suicide, where the physician or third party gives the patient the means to end his/her own life, is legal in the states of Oregon, Washington, and Montana. It is required in these states that the patient is of sound mind when requesting assisted suicide, as confirmed by a doctor and other witnesses, and that the patient be diagnosed with a terminal illness. With regards to voluntary euthanasia, many people argue that ‘equal access’ should apply to access to suicide as well, so therefore disabled people who cannot kill themselves should have access to voluntary euthanasia.
In 2010, in a first-of-its-kind comprehensive consensus statement, the Heart Rhythm Society in collaboration with the major cardiology, geriatrics, and palliative care societies, emphasized that deactivation of implantable cardioverter-defibrillators is neither euthanasia nor physician-assisted suicide (33). The organizations urged clinicians to respect the right of patients to request deactivation. The NCCN guidelines recommend that physicians explore requests for assisted suicide and explain to the patient the distinctions among assisted suicide, treatment withdrawal, and aggressive symptom management (12). Some states have enacted assisted suicide statutes. State laws vary, and knowledge of your local statutes is necessary.
The issue of physician-assisted-suicide or euthanasia is likely to remain high on the medico-legal or ethical agendas of many countries in coming years. One reason, according to some experts, is a growing insistence among patients in many countries on having the final say – in all senses of the word “final” – about their medical treatment. Another reason is that people are living longer and because of medical advances increasing numbers are surviving with debilitating conditions, such as cancer and heart disease. However, some experts in palliative medicine argue that advances in palliative medicine mean that more patients should be able to live a pain-free life, thereby reducing the need for physician-assisted suicide or euthanasia. It should not be an issue of palliative care vs. euthanasia. The best possible care should be given before the issue of ending life arises. However, a discussion of ending-life should be part of the palliative care package. One of the main reasons for requesting ending-life is fear of the dying process. So, if patients are confident that a doctor will not refuse physician-assisted suicide or euthanasia at a future date this can be very reassuring and can give them the strength to continue. Most of population in US is believed to support some sort of “death on demand”.
The Netherlands legalized voluntary euthanasia in 2001 and is one of the few countries in the world to have done so. As of 2011, some forms of voluntary euthanasia are legal in Belgium, Luxembourg, the Netherlands, Switzerland, and the US states of Oregon, Montana and Washington. The evidence of more than a dozen years’ experience in Oregon and two years’ data from Washington state suggests that legalized physician-assisted death provides an appropriate and ethically acceptable choice to patients who wish it and who qualify under the statutory guidelines. No physician, pharmacist or other healthcare provider is required to participate in the practice if it violates his or her religious beliefs or conscience. There is no evidence of abuse, coercion, or expansion of the practice beyond the limited class of patients who are terminally ill but retain decisional capacity. There is no evidence of disproportionate impact on the poor, uneducated, and uninsured.
The right-to-die is the ethical or institutional entitlement of the individual to commit suicide or to undergo voluntary euthanasia. Possession of this right is often understood to mean that a person with a terminal illness should be allowed to commit suicide or assisted-suicide or to decline life-prolonging treatment, where a disease would otherwise prolong their suffering to an identical result. The question of who, if anyone, should be empowered to make these decisions is often central to debate. Legalization of ending-life might not increase requests, as patients may find it easier to talk to a doctor about it knowing that the doctor will not now be committing a crime. Some people view this issue of legalization of ending life measure as an assault on the sanctity of life. Legalization of right-to-die is a decision for society not doctors. Terminally ill patients spend their final months making serious decisions about medical care and the disposition of their assets after death. Increasingly, they are also choosing to make decisions about the manner and timing of their death, and many are completing advance directives to withhold life-sustaining treatment. A controversial facet of this trend toward a more self-directed dying process is the question of assisted dying – whether patients should have the option of acquiring a lethal dose of medication with the explicit intention of ending their own life. We envision the development of a central state or federal mechanism to confirm the authenticity and eligibility of patients’ requests, dispense medication, and monitor demand and use. Such a mechanism would obviate physician involvement beyond usual care. Momentum is building for assisted dying. With an independent dispensation mechanism, terminally ill patients who wished to exercise their autonomy in the dying process would have that option, and physicians would not be required to take actions that are not already part of their commitment to providing high-quality care.
End-of-Life Decision Making
End of Life Care: Pain Assessment and Management
End-of-life Care: Symptom Management (Part 1)
End-of-life Care: Symptom Management (Part 2)