Palliative Care and Pain Management at the End of Life ___________________________________________
ethical obligation to give attention to expressed needs and to bear in mind that spirituality and religion are essential to many patients’ identity as persons. The healthcare professional’s role should be to inquire, assess, and refer as indicated [530]. Doing so demonstrates respect for the patient as a whole person and strengthens the patient-clinician relationship. FAMILY-CENTERED PSYCHOSOCIAL NEEDS Adequate psychosocial support is also needed for the patient’s family. The structure of families varies widely, and it is impor- tant 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 [6; 67]. For some patients, friends provide the support network when fami- lies are not nearby, 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 sup- port for grieving partners who may be disenfranchised [425]. Family caregivers can become overwhelmed with added respon- sibilities. 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 psychological well-being and appropri- ate grieving [67]. 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 transporta- tion is available [310]. 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 [426]. In Asian families, elders are revered and a young person cannot tell an older person what to do [427]. This may make it dif- ficult 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 [428].
All members of the healthcare team should become famil- iar 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 [429]. 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. THE PATIENT’S NEEDS During the last days, all care should be directed at comfort, and the NCCN has listed several interventions for imminently dying patients ( Table 24 ) [310]. 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 [67]. 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 neces- sary. Treatment of pain should continue, and knowledge of opioid pharmacology becomes critical during the last hours of life [67; 430]. The metabolites of morphine and some other opi- oids 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 [214; 431]. 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. However, it is important to note that results of clinical trials examining various phar- macologic agents for the treatment of death rattle have so far been inconclusive [432]. Despite the lack of clear evidence, pharmacologic therapies continue to be used frequently in clinical practice [430]. Specific drugs used include scopol- amine, glycopyrrolate, hyoscyamine, and atropine ( Table 25 ) [67; 430; 433]. Glycopyrrolate may be preferred because it is less likely to penetrate the central nervous system and with fewer adverse effects than with other antimuscarinic agents, which can worsen delirium [430]. 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
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MDCA1525
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