End-of-Life Care Eases Pain and Prepares Patient for Death

Medical technology continues to seek cures for practically every health condition known to humankind. However, sometimes there is no cure for a fatal disorder. Decades ago, the patient may have been left to wither away, sometimes in extreme pain. Today, however, many medical centers have palliative care programs designed to care for patients as they near the end of their life.

The World Health Organization defines palliative medicine as "the active total care of patients whose disease is not responsive to curative treatment." End-of-life care is designed to treat the whole person and is based on a meeting or consultation with the patient and his or her family. Patients and their families should request a palliative care consultation when faced with a terminal illness.

The essential components of this consultation are assessing and managing physical symptoms; helping patients identify personal goals for end-of-life care; assessing and managing psychological and spiritual needs; assessing the patient's support system; assessing and communicating the estimated prognosis; and assessing discharge planning issues.

Understanding the patient's discomfort is the first step. Pain is not the only end-of-life symptom. Others include dry mouth, nausea, water retention and swelling, lack of appetite and shortness of breath. The degree to which symptoms affect daily living varies widely between patients. In addition to medication and other interventions, it helps patients if they know what is causing their symptoms. Ultimately, they may have to decide if they wish more diagnostic evaluation and more aggressive treatment, which in itself can cause discomfort. "Overtreatment" is a common problem with end-of-life care.

As patients move away from life-prolonging goals, they should focus on short-term goals oriented to comfort. These might include alleviating dry mouth, improving pain control, avoiding further hospitalizations or returning home. Advancing these goals without adding unnecessary burden is the focus. The patient must decide which aspects of care are most meaningful to him or her.

With an inpatient hospital setting, the patient should be given the ability to question any medical tests or routines assumed to be ordinary care, whether it is chemotherapy or blood tests. Ordinary hospital measures, such as checking vital signs, may be unwanted by the terminally ill patient. Making these decisions is difficult for the patient, family and medical team. A palliative medicine consultant can help sort through issues for everyone involved.

There are a number of psychological and spiritual issues affecting a terminally ill patient. Fear or denial of impending death, concerns about his or her family or finances, as well the search for meaning, are common issues that can affect decision-making about treatment. Family members and the medical team need to understand the intensity of these issues. A palliative medicine consultant can provide or arrange counseling for the patient and/or family. Sometimes discussing prognosis information or encouraging short-term goal-setting (e.g., going home) is helpful.

While many terminally ill patients have a family and friends to provide the necessary physical, spiritual and emotional support, others do not. Often a patient is concerned about being a burden to others. Such concerns unnecessarily reduce an available support system. A palliative care consultant can help patients identify support resources beyond family and friends to include people from their work, church, neighborhood, and even hospital volunteers.

The most important piece of information to help determine appropriate treatment, make short-term goals and arrange for discharge planning is a patient's prognosis. "How long do I have to live?" is the essential question. Many health care providers do not like to give an estimate. But this information is vital to helping patients and their families prepare themselves psychologically for death. It also allows health care providers to mobilize community support services, particularly home hospice care. To receive this benefit, Medicare and many insurance plans require the physician to certify that the patient has six or fewer months to live.

Patients should realize that predictions are far from certain. A massive, fatal stroke can happen to virtually anyone at any time, including those who are already terminally ill. Predicting a prognosis beyond three to six months becomes increasingly difficult to do with any certainty, particularly if there are a number of health factors involved. Because of existing data, establishing an end-of-life prognosis for cancer is easier than for other conditions, such as end-state heart disease, lung disease or dementia. Finally, it has been found on average that experienced physicians make more accurate predictions than inexperienced physicians.

For hospitalized patients, there are a number of discharge options to consider, and physicians, nurses and hospital discharge planners may not have all the answers. Hopefully, the palliative care consultant can help. Options include staying in the hospital, transferring to a long-term care facility or nursing home, or going home. Additional services, such as hospice care, can be provided anywhere. Controlling symptoms, providing emotional support and dealing with financial and insurance issues are key.

Most patients want to be at home, but may be concerned about burdening their family. Family members may not have the physical and emotional ability to provide effective support for an extended period of time, around-the-clock, if needed. They may not possess the technical skills necessary, either, depending on the prescribed treatment. Sometimes a symptom control plan can be developed that makes home care easier, such as the use of oral medications, rather than injections.

A patient who is approaching the end of his or her life has many decisions to make. Along with family members, a medical team that includes a palliative care specialist can be of particular assistance during this difficult time.

David E. Weissman, MD
Professor of Medicine (Neoplastic Diseases and Related Disorders)
Medical College of Wisconsin

Director
Froedtert & Medical College Palliative Care Program

Each year, Medical College of Wisconsin physicians care for more than 180,000 patients, representing nearly 500,000 patient visits. Medical College physicians practice at Children's Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital, the Milwaukee VA Medical Center, and many other hospitals and clinics in Milwaukee and southeastern Wisconsin.