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.