Goals of Care Goals of care evolve during the course of a serious illness. Patients, families, and medical staff must recognize that these goals can, and do, change -- often rapidly. Information and open lines of communication are essential if the goals are to be understood by everyone involved in the patient's care. For a patient in the earlier stages of a life-threatening illness, treatments might have the goal of curing the disease. When a cure is not possible, treatment still could be aimed at prolonging the patient's life while managing symptoms. At times during the course of the disease, the major goal might be to restore or maintain function. At other times, particularly toward the end of life, the treatment may focus completely on comfort for the patient and family. Medical Treatment The dying patient requires medical care for a variety of physical symptoms and needs. Medical treatment is now focused on making the patient as comfortable as possible. This treatment includes managing pain, fatigue, shortness of breath, and nausea and vomiting. The medical team should monitor the patient's treatment plan closely and review it to make sure that it is in the patient's best interests and in line with the goals of the treatment plan. This process may involve revising the drug regimen and discontinuing any unnecessary medications, deciding whether to continue nutrition, determining whether hydration (giving fluids) is appropriate, and providing comfort without artificial ventilation. The patient should be monitored by a nurse who can help to make him/her more comfortable by treating pressure sores (bedsores), bladder and bowel needs, immobility, and secretions. In some cases, when symptoms are unbearable and cannot be relieved, sedation may be offered to ease patient suffering. There are a few ways to ensure the best possible medical care for dying patients. First, it is important to find a skilled doctor who can meet the unique needs of dying patients. Patients should expect doctors to take their medical problems seriously and provide adequate relief for their physical symptoms. Second, patients should look for a compassionate doctor who listens to and addresses their concerns. A good doctor-patient relationship can have a healing effect in that it shows concern, respect, and the value of patients as individuals. Finally, medical staff should acquaint themselves with the patient's family members, speak openly with them, and include them in the course of the patient's dying process. The family is a great source of support, affirmation, and comfort at the end of life, and their involvement fosters a sense of continuity and well-being for the patient. Practical Considerations For most patients it is very difficult to hear that treatment is not going to offer a cure for their illnesses. At this time, patients should be assured that their physical symptoms can be addressed through a therapeutic treatment plan. Such a plan identifies patient problems and available treatment options. Once a care plan has been established and agreed upon, it is necessary to decide where patients will live out their remaining days. Choices for dying patients include being cared for at home, in the hospital, or in an inpatient hospice care facility. Regarding home care, it is necessary to determine if there are resources available, such as family members and home care attendants. In addition, family members must consider the physical and emotional factors involved in caring for a loved one. When deciding on inpatient hospice or hospital care, it is important to try to insure that the special needs of a dying patient will be met in each setting, including extended visiting hours and private rooms that are large enough to accommodate visitors. Psychological/Spiritual Treatment Psychological and spiritual distress in dying patients commonly presents as anxiety, depression, hopelessness, and remorse. If these feelings persist and interfere with the patient's functioning, they can severely affect his/her quality of life. Treatment is offered in an effort to restore a level of psychological and spiritual well-being. For psychiatric conditions, such as anxiety and depression, treatment includes supportive psychotherapy and the use of antidepressant or anti-anxiety drugs. Psychotherapy may include relaxation training, imagery, distraction, coping training, and restructuring negative thoughts. Spiritual distress may be confronted with curative approaches that address feelings of disappointment, remorse, and loss of personal identity. Some patients receive comfort from talking to a chaplain or minister about such topics as religion, death, and afterlife. Palliative Care Websites American Academy of Hospice and Palliative Medicine American Board of Hospice and Palliative Medicine Continuum Hospice Care End-of-Life Physician Education Resource Center European Association for Palliative Care Growth House, Inc. Hospice Cares International Hospice Institute & College National Hospice and Palliative Care Organization U.S. Dept. of Health and Human Services: A Clinical Guide on Supportive and Palliative Care for People with HIV/AIDS, 2003 Need more information on palliative care? Ask a question?

Department of Pain Medicine and Palliative Care Beth Israel Medical Center, New York City ©2005 Continuum Health Partners, Inc. www.stoppain.org/palliative_care