“Palliative care has made such a difference in the day-to-day stuff I have to deal with. It makes things bearable.”

Fred, 72

Palliative care is starting to get the attention it needs. Some new projects are testing innovative ways to give and pay for palliative care all the way through the course of an illness. People are coming up with good ideas that may work very well.

Together we can break down the barriers to getting excellent palliative and end-of-life care to the people who need it. We can find new ways of managing the issues that people with cancer and their families must face. We can make things better for people with cancer today and for those who may face it in the future. We can find better ways to help patients newly diagnosed with cancer, those dealing with treatment and recovery, as well as those coping with end-of-life issues.

After studying the state of palliative care in the United States, the National Cancer Policy Board developed recommendations to improve the system. On the next few pages we summarize their recommendations to doctors, the government, and others who can influence the quality of palliative care.

“Having a cancer center nearby— where they've made palliative care a priority—has really helped me in my practice. I know I can call them for the latest about treating my patients' symptoms.”

Aaron, 49, M.D.

1. Create Centers of Excellence in palliative care.

Around our country, the National Cancer Institute (NCI) should name certain cancer centers as Centers of Excellence in palliative care. These centers will:

• Give the best palliative care possible.
• Carry out research in palliative care. They could test new and current care guidelines and create new guidelines that may work better.
• Train health care providers in their region.

Here are examples of other things these centers could do:

• Make sure that caregivers in nearby hospitals learn about better ways to treat patients and their symptoms.
• Find ways to make it easier for all people to get palliative care. This may mean setting up outreach programs or training providers in diverse neighborhoods.
• Give fellowships in palliative and end-of-life care for cancer to health care providers and researchers.
• Keep local hospice staff up to date on new ways to give palliative care and to control pain and other symptoms.

“We're working to get new legislation in our state to make it possible for insurance to cover palliative care. I know it's going to help make a big improvement in the kind of care families get.”

Rebecca, 42, activist

2. Fund special projects to show how services could and should be given.

The government should fund projects to help develop new ways to pay for and give palliative care.

Each symptom faced by cancer patients needs more research. Here are examples of just a few of the many needed research areas. We need to:

• Find out why so many patients have pain, even though current pain medications are excellent.
• Find more new treatments for pain.
• Test products to improve appetite.
• Find new ways to cope with fatigue.

3. Pay for the true costs of palliative and end-of-life care.

It takes time to work with dying persons and their families. This is especially true of dying children and their parents. There is a need to spend time talking through everything that is going on with the family. Health care team members must talk with each other often. A doctor may get paid about the same for a long, difficult visit like this as for seeing a child with a sore throat. Insurers should make sure they pay fairly for this special type of care and the time it takes to provide it.

“The health care educator walked me through my choices and explained everything really well. It was important to me that my family knew what to expect.”

Hana, 62

4. Give people the information they need about palliative and end-of-life care.

Health care providers and groups providing information about cancer prevention and treatment should also provide information about palliative and end-of-life care. People should have information about palliative care all through the course of their disease. People also need to know what to expect at the end of life.

All written materials should:

• Be written in plain language so they can be easily understood.
• Meet the needs and values of the people who will read them.

Booklets and other kinds of written materials should be made especially for:

• Children with cancer and their families.
• People of different ethnic backgrounds and beliefs.

Other ways of getting information to people, such as videos, awareness campaigns, or television programs need to be created.

5. Create standards of care to help health care providers deal with pain and the other problems people with cancer face.

The health care profession is responsible for creating standards of care that spell out what good palliative care means. Professional societies that represent doctors, nurses, and social workers in cancer care should work together to create, test, and use the best possible practices in the care they provide to people with cancer throughout their treatment and at the end of life.

“My family was brought closer together through this crisis. The loving, respectful care we got really made a difference to all of us.”

Chris, 53

6. Make sure that palliative care and end-of-life care improves.

We need to:

• Develop a standard way to measure the quality of palliative care and end-of-life care.
• Support research and projects that show how to give excellent palliative and end-of-life care.