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  • Living with cancer shouldn't mean living with pain or other distressing symptoms. It shouldn't

  • 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.

Living with cancer shouldn't mean living with pain or other distressing symptoms. It shouldn't

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