Palliative care is comprehensive interdisciplinary care that focuses on the quality of life of patients with a life-limiting advanced disease or terminal disease and for their families. Care is “comprehensive” because it aims to prevent and relieve all the sources of suffering, including not only pain and other disagreeable physical symptoms but also emotional, sociocultural, and spiritual distress. A core palliative care team typically consists of a physician, nurse, social worker, and chaplain who meet regularly to provide coordinated, interdisciplinary care and to promote a patient-derived concept of quality of life. Teams may also include a bereavement counselor, volunteer coordinator, volunteers, nutritionist, physical therapist, and so on. The goals of care grow out of an exploration of the well-informed patient’s definition of living well until death comes and the management options provided by specially trained professionals—an individualized and changing view of a “good death.” Palliative medicine is the branch of medicine encompassing the knowledge, attitudes, and skills of the clinician that are a requisite for a practicing clinician on such a palliative care team.

Palliative care should not be confused with the dismissal or abandonment conveyed when physicians say to a dying person, erroneously and perhaps cruelly, “Nothing more can be done.” It is not “comfort measures only,” but it is rather an aggressive, active,
idealistic team approach to making the best of limited time. Palliative care is based on the hospice philosophy of care but is not subject to regulations in the United States that limit hospice care to persons with a prognosis of 6 months or less who have decided to forego all “aggressive,” expensive, and life-prolonging interventions. Indeed, palliative care is not an alternative to conventional care; it coexists comfortably with curative or life-prolonging measures. Therefore, it has a role in the earliest phases of management of a life-limiting or terminal condition, while also aggressively pursuing comfort, support, and quality of life through all appropriate means in the final phases of life.

Although all medical decisions should reflect patient values, preferences, beliefs, and goals, nowhere in medicine are individualized notions of good care—and of a good death—more important to be recognized than in palliative medicine. Patients’ desire for comfort, to avoid hospitalization and medical procedures, and to be at home or in homelike settings with their family present may be more of a priority than such common medical goals as prolonging life, curing an illness, or correcting a metabolic disorder. Weighing benefits and burdens often leads to a decision to discontinue a variety of “aggressive” interventions—diagnostic or therapeutic maneuvers, many of which require institutional care and that would seem appropriate at most times of life but not when one is dying. Simple measures (e.g., sublingual or buccal medication for a patient unable to swallow rather than an intravenous line) are often favored because they are easier to carry out at home and do not entail regular nursing attention or much discomfort or expense.

Areas typically addressed in a palliative care plan of care include the following:

Pain and Symptom Control: Patients who are dying often experience a myriad of disagreeable physical symptoms that interfere with their ability to function and enjoy their remaining life. These symptoms may include pain, as well as nausea, vomiting, anorexia, dyspnea, weakness, fatigue, and bowel and bladder problems. The fear of unrelieved pain and suffering can be enormously disturbing and can make the patients wish that they were already dead. Although studies of what patients and family members want most when they are terminally ill tend to identify primarily nonphysical matters, excellent pain and symptom control are essential substrates that allow for good psychosocial and spiritual coping and a good death. Attention to all physical symptoms and meticulous treatment of even minor distress can contribute greatly to the patient’s overall well-being. Current palliative care textbooks describe treatments that can alleviate most of these common symptoms.

Sense of Control: Control of different aspects of life can be important to many patients. Indeed, loss of control from health- related issues can be overwhelming for some patients. As a terminal illness progresses, there is increased loss of control. People may feel diminished when they sense they are being treated merely as patients, subject to the orders of doctors and nurses and requiring family for assistance with everyday tasks.
An individualized care plan reflecting sensitivity to concerns about control helps patients feel more themselves rather than passive victims. For example, using a patient-controlled analgesia (PCA) device rather than relying on nurses or family to bring medications may bolster a patient’s sense of active involvement in the care process and result in better pain and symptom management.

Patient-centered Decision Making: By current bioethical standards, competent adults can choose what medical treatment to accept. They have the right to refuse any proposed life-sustaining treatment. More important, in order to create a plan of care that includes personal values and goals, patients have the right to be helped to understand all reasonable diagnostic and treatment options and the likely consequences of carrying out such procedures.

Patients need professional collaboration in making good choices—shared decision making. If the patient is incapable of making decisions or prefers to delegate them, then a designated proxy or, by default, the closest family member needs to consider carefully what the patient would want. For a patient who is incompetent, a process called “substituted judgment” is requested, asking the proxy to determine what the patient would choose if he or she were able to make a decision. The proxy might be asked questions such as the following: Has the patient ever said anything about similar diagnostic or treatment options in the past? Would the patient want to live this way? How did the patient react about other people’s decisions in such situations or their deaths? Answers to these sorts of questions provide clues to how substituted judgment can be carried out. An important aspect of substituted judgment is that it does not require the proxy or family to decide what they think is right or what they want; it simply asks them about the patient’s values so that the health care team can base their decisions on them. Only when no such information about patient preferences is available is the proxy or family asked to help make a decision on behalf of the patient, based on what they think is right. Finally, in situations in which no proxy is available, decisions in the best interest of the patient are left to the medical team, generally assisted by a patient representative, an ethics consultant, or, occasionally, a court-appointed guardian.

Avoid Inappropriate Prolongation of Dying When Quality of Life is Diminished: Patients and families fear painful, depersonalized, costly, prolonged dying. Many fear a medical system that uses technology to keep a patient alive but does not know when to stop such measures. Patients and families should be reassured that their wish to avoid prolonging the dying process will be honored. At the same time, they should never feel abandoned or that the intensity of support and attention to their comfort will be lessened because they have rejected any treatment options.

Great importance may be placed on protecting the patient from a “bad death.” Would it make more sense to let the patient die from a potentially reversible infection or metabolic disorder rather than to rescue him briefly from death but leave him to face great pain and suffering? Is an effective treatment, perhaps
involving prolonged hospitalization or invasive procedures, less desirable than a less definitive, simple, easily handled approach that can be carried out in the home? Neither excessive reliance on medical technology nor crude and inflexible dismissal of the most elaborate technical approaches is appropriate.

Identify Meaning and Purpose in Life and Redefine Hope for the Remaining Time: Facing death paradoxically involves seeking meaning and purpose in life. Patients who recognize their terminal condition regularly ask spiritual questions: Why me? Did I live a good life? What happens after I die? Will I be remembered? Exploring these questions, perhaps in the context of religious beliefs, is part of making sense of mortality and of facing death. The answers to these questions are also the basis for hope for the future—not necessarily hope of living forever, but hope of living longer, of making the best of whatever time is left, of taking some pride in one’s life, of experiencing a sense of completion, or of feeling one has made an enduring contribution. Patients often hope to fulfill key duties or wishes in their remaining time; for example, putting one’s affairs in order, or surviving long enough to see a new grandchild or to attend a family wedding may be attainable goals. Reconciliation with loved ones may be important. Patients can be helped by questions about “unfinished business”: If you died tonight, what would be left undone? What do you still hope to accomplish?

Assistance in Preparation for Death: Dying patients may want assistance with practical issues such as completing a health care proxy, executing a durable power of attorney, writing a will, or making funeral arrangements. Often patients are hesitant to ask about their future or to share their worries about the dying process, although they regularly harbor deep fears (e.g., of a crescendo of intractable pain or of suffocation). Although clinicians cannot foresee the future, they can reassure patients about providing comfort and nonabandonment, and they often can reassure patients about unnecessary fears (e.g., “You really do not need to worry about suffocation with this kind of cancer”). Ask patients what is on their mind: What are your concerns now? Have you had thoughts about what the future holds? Are you thinking about death? What are your worst fears?

Psychosocial and Spiritual Care of the Family: Because the patient’s medical condition usually is our primary focus, professional caregivers may overlook the suffering of family and friends. Although the patient is dying, those close to the patient may experience anticipating grieving, each struggling with his or her own imminent loss. They also benefit from the caring and support offered by palliative care professionals. Could a chaplain or priest be helpful at the bedside? Would a social worker facilitate the family in more effective coping with their grief? How are they managing the financial burden of terminal illness (which proves devastating to about a third of families) or the need for assisting the patient at home? Unhappy memories of a relative’s difficult death or the perception that one did not fulfill an expected role can cause suffering that complicates grief long after the patient dies. Family support should extend through the period of intense bereavement, typically the first year, and specialized resources may be required for selected survivors.

Patients and their families commonly wish to be at home for most, or all, of the course of a terminal illness. In the United States, hospice programs specialize in appropriate end-of-life care in the home. Such programs have been shown to provide improved outcomes at lower cost for dying persons in the final months of life. Unfortunately, government-mandated admission requirements, including a likely prognosis of 6 months or less and a rejection of costly, “aggressive” life-sustaining measures, have hindered appropriate referral of patients to hospice. Most patients use such services only in the last few weeks of life. Palliative care programs—features of care that are well established throughout the United Kingdom, Australia, and Canada and that are currently developing in many academic centers in the United States—are more flexible in serving patients and families earlier in the course of the illness and are willing to entertain all forms of diagnostic and therapeutic interventions that might benefit the patient.

Home Care: At home, the patient often finds comfort, privacy, security, and a sense of control. The close involvement of family and friends and the convenience of being at home are also appreciated. Most patients express the wish to be cared for and often even to die at home. Home hospice generally provides medications, durable medical equipment, occasional nursing visits, home health aide visits, and 24-hour on-call assistance, while offering support from volunteers, chaplains, social workers, and bereavement coordinators. For most of the day, families are usually the direct caregivers in the home. When properly arranged, home hospice can be a rewarding experience and a powerful source of satisfaction for the family, leaving them with the feeling that they did everything they could for their loved one.

Institutional Care: When the patient’s medical condition and comfort require more attention or skilled care than is available at home from the “formal” services of trained health service providers and from the “informal” assistance of family and friends, institutional care is required. Inpatient hospices and palliative care units, typically located in acute care hospitals, chronic care hospitals, or nursing homes, provide such an option. These units ideally provide a homelike atmosphere and ready access to family, friends, and pets, but also consistent professional assistance. By unburdening the family of difficult patient care responsibilities that are often physically and psychologically exhausting, these units allow the family to support a loved one in a more comfortable, appropriate manner.

Discharge Planning: The process of discharge planning from an acute care facility is a process, not a single event. Patients and their families, assisted by various health professionals, need to be educated about providing care and the common problems and crises they might encounter. Discussion includes availability of 24-hour assistance when problems arise and planning for where the death is likely to occur. The requirements for professional help and durable medical equipment need to be assessed. Complex medication regimens from the hospital can often be simplified, and drugs not essential for comfort may be eliminated. Families can then have a better sense of
their care-giving capabilities and can consider realistic options and appropriate settings.

Pain is frequently a problem at the end of life. Important principles in pain management in this situation include the following:

Opioids are the Mainstay of Cancer Pain Treatment: Many terminally ill patients with pain can be successfully managed with opioids alone, without resorting to other analgesics or interventional treatments. Opioids can also play an important role in managing dyspnea and anxiety, both common terminal symptoms. Some patients benefit from adjunctive therapies such as nonsteroidal antiinflammatory drugs (NSAIDs), neuropathic pain medications, and various psychotropic medications. A small number with unremitting, poorly controlled pain may benefit from an interventional procedure. The celiac plexus block is relatively simple to perform and helpful for patients with intraabdominal malignancies, particularly pancreatic cancer. Simplicity is the key in terminally patients; many of them are cared for at home by nonprofessionals who are easily overwhelmed by complex treatments. Treatment choices are described in Chapter 32.

The Oral Route is Preferred:

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