F. Amos Bailey , MD
Assistant Professor of Medicine
Department of Medicine, Division of Gerontology/Geriatrics/Palliative Care

Kathryn L. Burgio, PhD
Professor of Medicine
Department of Medicine, Division of Gerontology/Geriatrics/Palliative Care

The University of Alabama at Birmingham
Birmingham, Alabama

The University of Alabama School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

The University of Alabama School of Medicine designates this educational activity for a maximum of 0.25 AMA PRA Category 1 credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

The boards of nursing in many states, including Alabama, recognize Category 1 continuing medical education courses as acceptable activities for the renewal of license to practice nursing.

Of the 70% to 90% of Americans who would prefer to die at home, only one quarter of them actually do so. Hospitals and nursing homes provide the majority of end-of-life care in the United States, even as the number of patients served by home hospice grows each year. Although half of deaths occur in hospitals, only 20% of inpatient acute care facilities have palliative care programs, despite a 96% increase in such services since 2000. By 2030 the US population will include 70 million older Americans, many with serious chronic illnesses, increasing demand for palliative care.

Palliative medicine is an interdisciplinary approach that improves quality of life for chronically or terminally ill patients and their families. Its main goal is to relieve suffering, but it also facilitates discussion of the goals of care, assists with difficult decision making, and offers spiritual and bereavement support. Palliative care teams may include physicians and nurses as well as a social worker, chaplain, mental health professional, pharmacist, and others. Studies show the palliative care model effectively relieves pain, improves quality of life, supports ongoing reevaluation of care goals, increases patient and family satisfaction, and eases caregiver burden (Proc Bayl Univ Med Cent. 2004;17[3]:259-264).

Documentation of the inadequacies of institutional care permeates the literature. Particularly rife are the issues of insufficient pain management and symptom control, says gerontologist F. Amos Bailey, MD, director of the Safe Harbor Palliative Care Program at the Birmingham Veterans Affairs Medical Center (VAMC). The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT) found that many patients die prolonged and painful deaths, receiving unwanted, expensive, and invasive care (JAMA. 1995;274:1591-1598). Family members report concerns with overall quality and continuity of care, inadequate physician communication and emotional support, unmet spiritual and psychological needs, and a lack of respect for the dying patient (JAMA. 2004;291[1]:88-93).

Many physicians have had insufficient training in end-of-life care. US medical schools have offered little formal preclinical coursework on dying, while textbooks and postgraduate training rarely include information on palliative care. In a recent assessment of palliative care in the United States, Morrison et al found clinicians did not address most patient concerns and avoided discussing treatment preferences, patient values, and realistic goals of care (Med Clin N Am. 2006;90:983-1004). In the SUPPORT trial, for example, only 47% of physicians knew their patients’ preferences concerning cardiopulmonary resuscitation.

Physicians frequently do not recognize their patients are near the end of life. Thus, they do not adequately assess and manage suffering and may exacerbate the situation by aggressive, iatrogenically harmful treatments (Arch Intern Med. 2005;165:1722-1727). “Clinicians focused on a curative path do not always appreciate aspects of care that are crucial to patients and their families,” says Bailey. When faced with an incurable illness, patients reported they cared most about pain and symptom management, preparation for death, achievement of a sense of completion, autonomous decision-making, and being treated as a whole person. Mental awareness, planning the funeral, not being a burden to family or society, and making peace with God also are priorities for dying patients.

While dying patients may turn to family and spiritual concerns, doctors focus on biomedical aspects. “It is difficult for physicians to transition from disease-modifying treatments to a symptom-managing palliative care model in acute care settings where the focus is on cure,” says Bailey.

Health care providers may try every available technology in an attempt to cure patients and prolong life, while patients might benefit more from a comfortable, compassionate dying process. The palliative care approach emphasizes communication, symptom management, coordination of care, and attention to psychosocial problems, spiritual concerns, and bereavement.

The transition from a curative to a palliative approach is often abrupt and stressful, Bailey says. Ideally, a clinical team offers palliative care simultaneously with other appropriate medical treatments, working with the patient and family to determine when physical and psychological burdens outweigh the benefits of life-sustaining treatments.

The shift in thinking from curative to palliative approaches to care best occurs in a continuum, Bailey says. When clinicians skilled in end-of-life care recognize that a patient may be within 6 to 12 months of death, they modify treatment to improve quality of life. The shift affects every aspect of care, such as: relaxing dietary restrictions, concentrating on relieving symptoms, discussing goals of care, discontinuing ineffective disease-modifying treatments, reviewing advance-care plans, and saying goodbyes.

Bailey, who has more than 20 years experience in hospice care, along with UAB gerontologist Kathryn L. Burgio, PhD, studied the implementation of best practices of home hospice in an inpatient setting at the Birmingham VAMC. Bailey developed an Inpatient Comfort Care Program with a three-pronged approach including staff education, case identification, and implementation of a Comfort Care Order Set.

As part of the Inpatient Comfort Care Program, hospital staff received education related to end-of-life care, including parts of the American Medical Association’s “Education for Physicians on End-of-Life Care” training course, and rounded with Bailey. To promote case identification, Bailey widely disseminated a laminated pocket card listing simple screening criteria from the National Hospice Organization. He then implemented the adapted comfort care plans and provided patient-customized order sets to physicians and nurses.

Orders included guidelines for pain management; treatment of symptoms (dyspnea, anorexia, asthenia, nausea, depression, delirium, anxiety, and seizures); elimination of instrumentation (restraints, feeding tube, and intravenous lines); psychosocial interventions (social work notified and family present); pastoral support; comfortable surroundings; skin, mouth, and eye care; dietary modifications; management of secretions and rattling respirations; and hospice referrals.

The study used data from medical records of 203 veterans who died during a 6-month period. Bailey and Burgio measured the impact of the program on symptom documentation and process of care indicators, comparing outcomes among those patients who received intervention and those who did not. They found significant improvement in symptom documentation and process of care indicators (Arch Intern Med. 2005;165:1722-1727).

Because of the study, the VA medical teams more successfully identified patients in the actively dying phase and increased orders for care plans. After the intervention, the presence of an order for opioid medication at death increased from 57.1% to 83.2%. Do not attempt resuscitation (DNAR) orders at the time of death increased from 61.9% to 85.1%. “The DNAR order is an important indication of successful communication among the care team, the patient, and the family,” says Bailey. It is a turning point in the process of care away from a disease-modifying curative path to a more symptom-focused palliative care path.

VA Health Services Research and Development awarded Bailey, Burgio, and colleagues a 5-year, $1.5 million grant to evaluate this intervention in five other VA hospitals. Bailey provides guidelines and order sets for every phase of the end-of-life process in his book The Palliative Response.

Diagnosis of Dying: “Patients and families need more accurate prognoses from their doctors,” says Bailey. In studies of the accuracy of physician’s prognostication, terminally ill patients were given overly optimistic estimates of survival, with physicians being on target in one of five cases. While medicine’s cultural norm affirms hope for cure or increased chances of survival, excessive optimism leads to missed or late discussion of advance directives, leads patients and families to have unrealistic expectations about the effectiveness of treatment, complicates the transition to palliative care, and results in late referrals to hospice care. Patients who may have preferred to die at home with hospice care often are referred too late.

Hospice serves patients best when utilized for several months, but average use in the United States is only 3 weeks. The goal then becomes providing effective palliative care in the hospital. “If we diagnose dying correctly, we can offer the Comfort Care Plan to alleviate symptoms, support patients and their families, and improve quality of life,” Bailey says. Patients can make meaningful choices among care options and can discuss goals and values with caregivers.

Bailey utilizes 11 indicators to identify patients at high risk of entering the actively dying process. In addition, to determine if a patient is likely to die during a hospital stay, Bailey uses the “surprise” question, advocated by end-of-life care expert Joanne Lynn, MD, in which clinicians ask themselves, “Would I be surprised if my patient died in the next 6 months to a year?” If the answer is no, it is time to initiate advance-care planning discussions. “This simple question is a very accurate tool for diagnosing dying,” Bailey says.

Skillful Communication: Studies have shown a strong correlation between physician-patient communication and improved emotional well-being and satisfaction. Discussions between health care providers and patients and families dispel fears of abandonment, lay groundwork for conversations about goals, hopes, and fears, address spiritual concerns, and clarify resuscitation and life support decisions.

Physicians must be able to deliver bad news compassionately. A clinician’s task is to establish trust and provide reassurance of care, not to avoid bad news. “Patients and their families prefer to know the truth,” says Bailey.

Pain and Symptom Management: Relieving suffering and managing symptoms are core components of palliative care. Pain is often underrecognized and undertreated. Bailey recommends using an “offer-may-refuse” order. “Staff offer pain medications at regular intervals. Patients can take the medication or choose to wait until the next offer. They receive medications faster and are better able to control pain,” he explains.

Approaches to pain management depend on pathology and individual preferences and must be tailored to each patient, he says. The right combination of nonpharmacologic techniques, pharmacologic therapy, and radiopharmaceuticals can control pain without excessive sedation in up to 90% of cancer patients (Ann Rev Med. 2003;54:53-72). Clinicians may start with nonopioid agents for mild pain and add opioids as pain increases. Also, coanalgesics may be appropriate for treating visceral and neuropathic pain. Other common symptoms needing treatment are dyspnea, constipation, nausea, delirium, and depression.

Psychosocial and Spiritual Support: Palliative care recognizes the importance of nonphysical aspects of dying and the fact that not all suffering is physical. “Clinicians may overlook such aspects, but patients rate them as highly important,” Bailey says. Most patients report physician-initiated discussions about spiritual beliefs increase trust in their doctor (Arch Inter Med. 1999;159:1803- 1806).

The health care team must identify concerns and areas of potential distress and listen empathetically, Bailey says, noting that chaplains and social workers are often skilled in such discussions. Likewise, grief and bereavement fall into the realm of palliative care. Clinicians can identify family members at high risk for complicated grief and refer them to an appropriate health care professional.

Quality care at the end of life must be individualized. Compassionate health care, shared decision making, and clear communication about preferences

and values are vitally important. Bailey affirms that “life’s end can be a time of growth for patients and their families. Palliative care that alleviates physical, emotional, social, and spiritual suffering can allow each of us to experience this personal growth."

For more information:

Dr. Amos Bailey
Dr. Kathryn Burgio
1-800-UAB-MIST
mist@uabmc.edu

To take the test click here!