Key Point

Through palliative care, physicians can help patients improve quality of life during any stage of an acute, chronic, or terminal illness, according to an American Thoracic Society statement.

Integration of palliative care into the early stages of patient management and the need for adequate physician training in the implementation of such a measure are two of the major focuses of the American Thoracic Society (ATS) statement on palliative care for respiratory and critically ill patients published in the April 15 American Journal of Respiratory and Critical Care Medicine.

In the 1960s, palliative care focused on symptom management and support during the terminal phase of a life-limiting disease, according to statement authors Paul N. Lanken, MD, co-chair of the End-of-Life Care Task Force of the ATS Critical Care Assembly, and colleagues. Since then, its goal has been expanded to include achieving the best possible quality of life for patients during any stage of an acute, chronic, or terminal illness. Palliative care also should be available to the patient both during and after life-prolonging treatments, as well as for the family after the patient’s death.

STARTING PALLIATIVE CARE

Decision making at the end of life is a challenging task that should be handled sensitively by physicians, according to the ATS statement. Physicians should candidly and compassionately inform patients when they are nearing death.

For patients with advanced lung diseases, physicians must address decisions regarding mechanical ventilation, lung transplantation, and phase I or II clinical trials. Patients need to understand the benefits and drawbacks of these options, including potentially less time with family.

It is important to determine patients’ immediate and long-term goals of care, as well as whom they want to make decisions on their behalf if they are unable to do so. The patients or surrogates must decide whether to discontinue life-prolonging interventions and the amount of palliative care they wish to receive.

These types of decisions are often addressed in an advance directive; however, physicians, as well as patients, should be aware of the limitations of advance directives in actual situations. Often, patients do not have them or do not update them regularly, though for those who have documented their wishes, research shows that most patients do not change their preferences over time, the investigators pointed out.

Once these decisions have been made, coordinating and providing palliative care can begin. “An interdisciplinary approach to providing palliative care is an effective way to meet all of the needs of the patient, family, other loved ones, and caregivers,” according to the ATS statement. The interdisciplinary team can include members ranging from physicians, nurses, and therapists to social workers and chaplains.

Palliative care often includes hospice care at the end of life. Eligibility for hospice requires that the patient’s prognosis is likely death in less than six months.

Patients with nonneoplastic advanced lung disease may face obstacles in getting hospice referral. Physicians have more difficulty determining their prognosis and predicting a six-month mortality period. For COPD patients, for example, there is the BODE (BMI, airflow obstruction, dyspnea, and exercise capacity) index, which provides prognostic information from 12 to 52 months. However, this index is not capable of determining a risk of mortality greater than 50% at a six-month time period, the authors of the statement pointed out. A validated predictive model is needed for these types of diseases, they suggested.

Also, physicians may be reluctant to discuss or recommend hospice because of their lack of training in communicating to patients that death is near or because they are unaware of its availability for noncancer patients.

SYMPTOM MANAGEMENT

Dyspnea and pain are two common symptoms experienced and/or feared by dying patients. Controlling these symptoms is the cornerstone of palliative care.

Dyspnea has no completely satisfactory palliative treatment, the task force stated, and physicians should encourage patients early on to participate in pulmonary rehabilitation programs, where they can learn ways to control dyspnea and to alleviate anxiety. The incorporation of regular assessment, opioids and anxiolytics, counseling, and care coordination into dyspnea management can provide considerable relief.

Although noninvasive positive-pressure ventilation is typically used to prolong life, it may be appropriate since it can relieve dyspnea. Invasive and noninvasive home ventilators can appear threatening to the family. Family members should be trained so that they feel comfortable using the equipment.

Pain is experienced often by about half of adult patients with cancer, and family members estimate that it is inadequately treated at the end of life, research shows. According to the ATS statement, pain assessment should be considered another “vital sign.” This assessment requires the patient’s active cooperation, since it is not simply a physical sign but has social, psychological, and spiritual dimensions as well.

“The correct dose [of pain medication] is the dose that relieves the symptom; there are no maximum doses of opioids,” the statement authors stressed. They added that while some believe that opioids may hasten death through respiratory depression, several studies have found no evidence of this if the drugs are used appropriately. Also, according to the “principle of double effect,” the relief of suffering adequately justifies using opioids to control dyspnea or pain, they contended.

Psychological and spiritual distress are also common in patients with advanced respiratory diseases. Many patients become depressed when life-sustaining interventions are limited. Physicians should be aware of this and should reevaluate patients’ end-of-life preferences when they have had sufficient time to respond to treatment for depression. In addition to assessing patients, clinicians should monitor caregivers for depression, discuss their vulnerability with them, and offer support and referral resources.

WITHDRAWING MECHANICAL VENTILATION

Physicians should begin discussions about withdrawing mechanical ventilation when such treatment has become more burdensome than beneficial to the patient or when the patients or their surrogates bring up the issue. It is important to acknowledge the feelings and concerns of the patients and surrogates as they work through the decision-making process.

Once the decision has been made, a consensus should be reached on when and how this will occur. The family should be aware that it is difficult to predict how long a patient will continue to breathe after ventilator withdrawal and should know what to expect and hear during the dying process.

Both before and after a patient’s death, physicians should provide family members with resources for bereavement counseling. They should be able to describe the normal grieving process to families and offer them sources of support.

Attending funeral and memorial services, as well as sending a sympathy card or letter of condolence, can be therapeutic for both families and providers. Health care team members may benefit from meeting together several weeks after the death to express their own emotions and to review any issues in patient management.

—Lissa Edmond

Suggested Reading
Lanken PN, Terry PB, DeLisser HM, et al; ATS End-of-Life Care Task Force. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med. 2008;177(8):912-927.

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