mean worrying about the fact that treatments may not meet your values and goals and it

shouldn't mean worrying about your family and your other caregivers. So what palliative

care does is it provides an added layer of support to patients with cancer, both those

who are going through active disease directed treatment by helping managing side effects

and helping to improve quality of life in that setting, and helping survivors who may

be living with treatment related side effects and complications well after the disease is

cured and also helping persons who are living with cancer on a daily basis by focusing on

improving their quality of life in the setting of that disease.

There are three big gaps in palliative care research related to cancer and other serious

illness. The first is around pain and symptom management. Whereas we have reasonable treatments

for some pain syndromes the vast majority of pain syndromes, we don't. And the drugs

that we have, opioids, all have extensive side effects. When you look at other symptoms

that are highly prevalent in cancer -- loss of appetite, fatigue, breathlessness, we have

very few treatments that are highly effective in improving the quality of life for those

patients and families. We need a huge amount of research around pain and other symptoms

and around psychological symptoms and around spiritual distress. The second area that we

need enhanced research is around communication. There is this myth in medicine that doctors

be able to communicate, the reality is that these are skills that need to be researched,

taught, and then promulgated.

And the third area

where we need tremendous research and investment is to develop new models of care that are

appropriate for people with serious illness and meet their needs. Patients with cancer

and other serious illness need more than just a physician's visit, they need somebody to

call when there is a crisis, they need help at home, so we need to be able to develop

these models that meet patients where they are rather than expecting patients and their

families to always schlep in to see us in the doctor's office.

This is a huge knowledge gap for us as field because where there is a limited evidence

for palliative care in adults, the evidence base for children is almost nonexistent. So

for example, we know very little about how to treat pain in the setting of active treatment

for kids, even less about how to treat fatigue, and about how to care for the siblings of

kids. And for kids who survive their cancer and live with often times the side effects

of treatment, they often live with ongoing pain, particularly nerve pain, they live with

fatigue, they live with other side effects and as a medical field we haven't directed

the amount of resources or research to managing symptoms as compared to disease-directed treatments.

I think there really is a sea-change within the cancer community that more and more we

are recognizing that the focus of cancer care needs to be on the person and the family,

not just specifically on the tumor and the disease.

The focus is now really on the quality of life for people living with cancer and the

quality of life of their families. I think palliative care has a huge amount to offer

in terms of improving the quality of life for people with cancer.