Team approach best for providing palliative care

Patients with life-altering illnesses or injuries pose particular treatment challenges for primary care physicians.

By Susan J. Landers, amednews staff. Feb. 24, 2003.

Washington -- During his first visit to his primary care physician after a serious fall, a patient was never asked about the life-altering experience that had necessitated his three-month hospital stay and left him unable to walk. On the contrary, the physician made a flippant reference to his patient's "little adventure."

The patient found another physician pronto.

Links
See related content

Injuries and illnesses that permanently change the way patients live their lives necessitate a different kind of care from physicians, one that goes beyond the traditional to include helping patients and families to better cope with an abruptly changed life.

Clinicians who are involved in the care of these patients have a big job. They must attempt to help patients make adjustments, manage distress, reduce suffering and find joy and meaning in a changed life, said Russell K. Portenoy, MD, chair of the department of pain medicine and palliative care at Beth Israel Medical Center in New York City.

It's an approach that can often prove difficult for physicians. "Doctors are taught to cure disease, and if they can't do that, they sometimes don't know what else to do," said Carla Alexander, MD, medical director of the palliative care program at the University of Maryland in Baltimore and medical director for the National Hospice and Palliative Care Organization.

The University of Maryland Medical Center's program enrolls patients who have life-threatening or life-altering illnesses or injuries, but not necessarily a terminal diagnosis, said Jean Tucker Mann, a social worker who directs patient care services at the medical center and was instrumental in starting the palliative care program.

806 hospitals nationwide provided palliative care in 2001, up from 668 in 2000.

Mann said she initially was surprised at how little physicians knew about the concept of palliative care. "Most felt that palliative care meant end-of-life care exclusively. It was apparent they were not interested in referring their patients for palliative care because they thought it meant that a patient had to be dying."

Yet, palliative care programs are being instituted at a growing number of hospitals. The American Hospital Assn.'s most recent annual survey revealed that 806 hospitals nationwide were providing palliative care in 2001 compared with 668 the previous year. What are lacking are similar programs for outpatients.

It is obvious that there is a need for palliative care and that need is growing. By 2030, the number of those 65 or older will have more than doubled to 70 million, or one in every five Americans. With the availability of advanced medical technologies, this growing number of older adults will live longer but with serious chronic illness and ongoing pain and symptoms, notes the Center to Advance Palliative Care.

After the hospital

Once patients are discharged from a hospital, it is usually the primary care physician's task to provide at a least some of the ongoing care. And there are steps that can be taken to make that care more valuable to the patient and easier on the physician.

"The first thing to do is to sit down with the patient and family and try to understand what their goals are," said Dr. Alexander. "Ask the question, 'What are we trying to accomplish?' "

It is important that the planning includes the family and is not directed solely by the physician, said Dr. Alexander. The patient and family should list what they would like to achieve. "A physician may say, 'I don't think we can achieve that much, but let's try to do this much,' and in that way negotiate a reasonable plan."

By 2030, 1 of every 5 Americans, will be 65 or older.

Doctors should understand that it's OK to just try to manage a symptom and to teach the family how to take care of it so it doesn't become such an overwhelming problem, she added.

"I think people get overwhelmed when they are faced with one big situation. But you can break it down into parts and ask, 'What are the little things that bother you everyday? What are the things that get in the way of just being able to live your life?' "

Treating the patient and family, whether a biological or a "chosen" family, as a unit is an important aspect of palliative care, agrees Charles von Gunten, MD, PhD, medical director for the Center for Palliative Studies at San Diego Hospice. "Your patient may benefit more from your attention to the family member who is 'hurting.' "

Dr. von Gunten focuses on four areas when he is assessing a person's palliative care needs.

He asks about a patient's symptoms; emotional responses to the changed circumstances; the impact the injury or illness has had on relationships or a patient's role in life; and he tries to determine how the patient is making sense of what has happened.

While the assessment allows for the development of a strategy that targets the major problems, it also illustrates a level of concern and empathy that may itself be profoundly therapeutic, said Dr. Portenoy.

With all that is involved in palliative care, a team approach is necessary. "No one can meet all the needs of a patient and family," said Dr. von Gunten. "Think broadly about the team members. They can be other doctors, nurses, social workers, chaplains, therapists, office support people, family members, friends and the patient."