Lines between palliative, regular, aggressive care blurring

An elderly patient who has lived for 11 years with ovarian cancer presents to the emergency department with renal failure, hypotension and infection. All three can be treated aggressively, but should they be? And how will physicians decide?

Reply:

By many measures, palliative medicine and hospice are becoming increasingly accepted aspects of medical care.

The number of patients being cared for by hospices reached 885,000 in 2002, representing about one-third of all deaths in the United States. The number of hospices in this country now exceeds 3,200.

The number of physicians being certified in hospice and palliative medicine by the American Board of Hospice and Palliative Medicine has now exceeded 1,500, and membership in the main professional society for physicians, the American Academy of Hospice and Palliative Medicine is similarly expanding. Unlike many specialists, physicians who practice palliative medicine come from a variety of fields -- internal medicine, oncology and geriatrics -- but there are palliative care physicians from psychiatry, emergency medicine, neurology, nephrology and surgery.

Despite this increasing physician acceptance, the median length of stay in hospice has remained at just over 20 days for almost a decade, and hospice is frequently seen by physicians and by patients and families as "giving up." As the husband of a terminally ill patient said, "It's where you go when everything else hasn't worked ... like you throw in the towel."

Why does this remain the perception, and what can be done about it?

Any discussion of palliative care needs to begin with the current consensus as to its definition.

The AAHPM defines palliative care as comprehensive care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying, where care is particularly focused on alleviating suffering and maintaining quality of life. Major concerns are pain and symptom management, information sharing, advance care planning, psychosocial and spiritual support, and coordination of care. This definition emphasizes quality of life, the alleviation of suffering, and the interdisciplinary care of patients and families.

Two cases will illustrate some common barriers to palliative care and hospice that arise for patients, families and physicians.

Case 1: The either-or choice

A 72-year-old woman with advanced ovarian cancer continues to have disease progression despite multiple regimens of chemotherapy. She has good functional status and lives alone with two adult children nearby.

Since she had been living with ovarian cancer for 11 years, it came as a surprise to her children when her oncologist referred her to a hospice. They wondered what had changed. "How could he know she had less than six months to live -- the maximum time for hospice?" her son asked.

When the patient began to have mental status changes, a hospice nurse went to see them at home and made some recommendations that failed to satisfy the family. The children felt like people were "giving up" on their mother. They called their mother's oncologist and, when they were unable to reach him, took her to the emergency department.

She was seen by the emergency staff and a palliative care physician. Her mental status changes were probably due to infection. She also had renal failure and hypotension. The family discussed goals and hopes "to do everything," and, after a long discussion, the decision was made to admit the patient to the intensive care unit.

After a day in the ICU, the patient was seen again by the palliative care team. She was receiving antibiotics, a transfusion and fluid rehydration. Eventually, she was transferred to the palliative care unit, where fluids and antibiotics were initially continued while the family considered hospice care. As her functional status declined, there were further discussions with the family, and the decision was made to stop all interventions.

Three clear issues surfaced: First, the goals of care changed rapidly over the course of several days. Second, there was a clear association in the mind of the patient's family members between hospice and giving up. Third, the family lacked confidence in their mother's prognosis.

Considering the patient's and family's goals is always crucial in medicine but is especially so near the end of life. Goals are not defined so much by cure rates as by what is important to a patient and the family. For some, reversing an infection might be an important goal; for others, dying at home is the main objective. For this patient, curing the ovarian cancer was not going to be possible, but she and her family wondered, quite appropriately, whether reversing the infection would be possible and would make her more comfortable.

Key to all of this is the notion that excellent care must include both palliative and curative elements. For example, a patient who is in hospice care with a diagnosis of metastatic lung cancer might reasonably want and expect her urinary tract infection cured. For too long we have categorized patients as receiving "palliative," "regular," or "aggressive" care. The truth is that patient desires can change at any point, and changes in illness can affect care plans.

It is a hope of physicians and of patients and families to defeat illness, as evident in the many war metaphors we use when discussing illness. It is not inappropriate to want to defeat illness, but it is not always realistic. Good palliative care recognizes that hope might exist but also tries to help establish achievable goals and hopes for patients.

Yet the desire to win remains a powerful force. Journalist Mickey Kaus once observed, "I sort of like having a medical culture that views death as a failure. It's better than the alternative." Kaus' remark is meant to be provocative, but it gets at a very important point. If we always see death as failure, 100% of patients and 100% of physicians will ultimately fail, and this will be neither satisfactory for patients nor fulfilling for physicians. Failure must be redefined to mean "not succeeding in helping patients and their families reframe goals and hopes." It often requires very frank -- yet compassionate -- acknowledgment of the limits to what can be done to reverse illness and very honest discussion of alternatives to cure or remission.

As physicians, we can be either hesitant to predict a disease course or overeager to assign a prognosis, and both of these extremes serve patients poorly. While we can't know the prognosis for a specific patient with absolute certainty, we can state with some reliability a range of outcomes for patients with similar illnesses and performance statuses.

There are many guidelines for prognosis in the medical literature and specifically for hospice and palliative care patients. The appropriate application of these guidelines will expand the use of hospice and palliative care. Listening to patients' and families' general desires for predictive information and responding to these questions carefully -- not dismissively or over optimistically -- is also a vital part of prognosis.

Some physicians perceive that the Medicare hospice benefit requirement for "a prognosis of six months or less if the illness runs its normal course" means that patients who live longer than six months must either be automatically discharged from hospice or that a hospice that cares for such a patient will become de-certified. Neither of these is true: If the hospice makes a thoughtful determination based on accepted prognostic standards, it is not required to discharge a patient who lives longer than six months. There are clear guidelines for prognosis and there are guidelines for re-certification.

A final barrier to effective hospice use is the misconception that it is only for patients with cancer.

Case 2: She doesn't have cancer

An 82-year-old woman who had not visited a physician in years was admitted to the hospital with fatigue and dyspnea. At home, she was bedbound and had recently lost 20 to 30 pounds.

An echocardiogram revealed severe mitral and tricuspid regurgitation and depressed systolic function. She was also found to have occult blood in her stool and an iron-deficiency anemia.

With her son, she decided that she did not want any further intervention or investigation of her health status. Her physician called for a palliative care consultation.

"I'm not sure why, but I think it will help -- she's not really in pain or anything. And besides, she doesn't have cancer that we know of," he said when explaining his reason for the call.

Although palliative care is appropriate for patients with non-cancer diagnoses, and there is increasing research and education in this area, we remain hesitant to use it. In 2003, cancer accounted for 49% of all admissions and heart disease for only 11%. Yet in 2002, heart disease remained the leading cause of death in the United States.

Since its inception, hospice care has been associated with cancer care. This historical association is compounded by the clearer distinction between the treatment of cancer and the cessation of disease-modifying therapy.

For heart disease, that line is often blurrier. While some medications might clearly treat the disease only (e.g., atorvostatin for hypercholersterolemia), others (e.g., digoxin for congestive heart failure) have quality-of-life as well as treatment benefits.

Doctors should not hesitate to consult with a palliative care team whenever a shortened prognosis, psychosocial concerns, pain management and end-of-life planning needs exist, even with the absence of a cancer diagnosis.

Each of these barriers -- not discussing goals of care, emphasizing "winning" and not attending to prognosis, considering hospice as only applicable to cancer -- all decrease the chances that patients will receive palliative and hospice care.

Each can be overcome with straightforward and open discussion that focuses not on diseases but on goals, not on winning but on hopes, and not on being correct in our predictions but on being compassionate in offering them.

Joshua Hauser, MD, instructor of medicine and palliative care and director of education, Buehler Center on Aging, Northwestern University Feinberg School of Medicine, Chicago