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The Palliative Caregiver

A Caregiver's Guide to Palliative Care
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The option of palliative care

Palliative care is person-centered care with a goal of maximizing a patient's quality of life. To achieve this, the palliative care team attends to physical, emotional, social, and spiritual quality of life -- for the caregiver as well as for the patient.

"It's very supportive and very holistic care," Ben Marcantonio, MFT, of the Institute for Palliative Medicine at San Diego Hospice, tells WebMD.

The growing use of hospice -- with its emphasis on pain control and quality of life -- has made people more aware of the benefits of palliative care for all patients, not just those who are dying. And it's demonstrated the important role family caregivers play on the palliative care team, says Christine Hudak, MD, associate director of Summa Palliative Care and Hospice Services in Akron, Ohio.

"They don't just know the person's likes and dislikes, they are also more likely to know their preferences for pain treatments and medical care, too," Hudak tells WebMD.

To find a palliative care team, Hudak suggests talking to the doctor most involved in your loved one's care or a hospital social worker. Usually they will refer you to a hospital program because almost 60% of large hospitals -- those with 50 or more beds -- have palliative care programs.

If the person you are caring for is a veteran, contact the Veterans Administration. Care consultants at local organizations, such as the Alzheimer's Association, may also be able to provide information on palliative care programs.

The Palliative Care Team

Good palliative care programs have two things in common, Hudak says. They use inter-disciplinary teams and each team works with the patient and family to create a personalized care plan. Typically, teams include:

  • a physician, who coordinates pain and symptom management and coordinates comfort care.
  • a pharmacist, who works with the physician to prescribe medications and monitor their effectiveness.
  • a specially trained nurse, who provides direct care to the patient and information, education, and medical support to the family.
  • a social worker/case manager, who helps navigate the health care bureaucracy, locate community resources, and provide counseling and emotional support to patient and family.
  • a chaplain, who addresses the patient's and caregiver's spiritual needs.
  • a dietitian, who helps address nutritional concerns.
  • other professionals, as needed, such as a psychiatrist, physical therapist, or respiratory therapist.

"This is a 'life' team. It helps people look at options and it provides step-by-step help for caregivers in making the decisions they need to make for the best quality of life for their family member," Helene Morgan, MSW, a member of the pediatric palliative care team at Children's Hospital in Los Angeles, tells WebMD.

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