Palliative care comprehension

Dispel idea that it is end-of-life care

Patients and caregivers are not often familiar with palliative care, or they misunderstand its purpose. Therefore, education on the reasons to make use of a multidisciplinary palliative care team and the benefits provided is important.

For most, the word does not have a lot of meaning, or they worry that palliative care is end-of-life care, says Steven Z. Pantilat, MD, FAAHPM, SFHM, professor of clinical medicine and director of the Palliative Care Program and Palliative Care Leadership Center at the University of California, San Francisco. It is care focused on improving quality of life for people with a serious illness such as heart failure, cancer, dementia, Alzheimer's disease, chronic lung disease, and chronic liver disease.

"People who may not understand what palliative care is can certainly relate to what palliative care does," says Pantilat.

Anyone with a serious and complex illness that needs help with pain or other symptom control such as fatigue, anxiety, sleeplessness, or shortness of breath benefits from palliative care, says Nathan Goldstein, MD, associate professor of the Brookdale Department of Geriatrics and Palliative Medicine, Hertzberg Palliative Care Institute, at Mount Sinai Medical Center in New York City. Palliative care also helps patients better understand their disease, develop goals for medical care, and tailor treatment to those goals.

Clinicians help patients and family members make decisions all the time, but the way a palliative care team helps is different, explains Goldstein. While physicians might ask patients if they want to continue with chemotherapy, members of a palliative care team work with patients to understand what is important to them at a given point in their illness. Also team members ask what their hopes and fears are, and they use the information to help patients make decisions. A palliative care team includes doctors, nurses, and other specialists such as social workers and chaplains.

Expertise in multiple issues

Often what is different about palliative care is the interdisciplinary nature of the team addressing medical, social, psychological, emotional, and spiritual issues that impact a patient's care in a comprehensive way.

"Experts who know how to talk with patients to help understand what their goals are and help ensure their treatment matches their preference," says Pantilat.

When a medical team focuses on disease management, issues that aren't addressed by this approach often get missed, he adds. Waking up in the middle of the night short of breath for someone who lives alone might have psychological implications. Adjusting medications is important but might not be the entire answer, says Pantilat. The patient might need someone to telephone or even someone to stay overnight.

It's important for staff to be educated on palliative care as well so the team can be set in place at the appropriate time, says Goldstein.

"The earlier we are called in, the better we can help patients cope with serious illness. The talking points of palliative care is not end-of-life care, it is care much earlier for patients to help them make complex decisions as well as support them during these really difficult medical situations," Goldstein explains.

Sources/Resource

• Nathan Goldstein, MD, Associate Professor, Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Palliative Medicine, Mount Sinai Medical Center, New York, NY. Telephone: (212) 241-1446. E-mail: Nathan.goldstein@mssm.edu.

• Steven Z. Pantilat, MD, FAAHPM, SFHM,, Professor of Clinical Medicine, Alan M. Kates and John M. Burnard Endowed Chair in Palliative Care, Director, Palliative Care Program and Palliative Care Leadership Center Director, Palliative Care Quality Network Director, Hospice and Palliative Medicine Fellowship, Division of Hospital Medicine, University of California, San Francisco. E-mail: stevep@medicine.ucsf.edu.

• Web: www.getpalliativecare.org. Web site offers educational materials that help explain palliative care to patients, including answers to the six most frequently asked questions. Select "What is Palliative Care," "How to Get Palliative Care," or "Is Palliative Care Right for You?" The Web site is sponsored by the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York City.