"The system is broken for the sickest and most vulnerable patients," Meier says. "The minute you get a serious illness, you get referred to a specialist. The specialist is focused on his or her organ or his or her disease. They're not focused on the whole person."
What you can do
There are steps people can take to ensure they get the best care possible.
Have a frank discussion with your doctor about your diagnosis, your prognosis and your goals for treatment. Ask for a referral to palliative care. If your doctor doesn't cooperate, ask for a second opinion or consider finding a new doctor, advises Thomas Smith, M.D., a palliative care researcher at Massey Cancer Center of Virginia Commonwealth University and director of the palliative care program there.
"It requires gumption on the part of the patient and their family, but it's absolutely necessary for good care of the seriously ill patient," says Smith. "Patients should not be afraid to ask for a palliative care consultation. It doesn't mean they'll die sooner. In fact, they might live better and longer."
Karen Rafinski is a freelance medical and science writer based in Boston.
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