One of the issues we've come to recognize is that patients think that suffering is a normal part of their treatment. Are patients themselves part of the problem when it comes to inadequate treatment of symptoms?Ī. France has passed a law assuring that patients will have access to pain medications paid for by the government. Australia also has a broad palliative care program. Across the board, it's a seamless system. Patients have access to in-patient palliative care units as well as to day hospice programs and home-based hospice programs.
For example, if we look at England, patients don't have to choose between getting chemotherapy and getting hospice care. They clearly have less institutional barriers for patients to receive care. How do other countries address palliative care?Ī. Our insurance system, including Medicare, often forces patients and their families into making choices between active therapy and palliative care. Does our insurance system figure into the problems with providing adequate palliative care?Ī. To the credit of New York State, the deans of the 14 medical schools have evaluated their curricula and are now in the process of instituting changes to incorporate these issues. And data collected in the early 90's indicated that no more than about 10 or 11 percent of medical schools had programs focusing on this. Moreover, studies have shown that less than 1 percent of standard medical textbooks had any chapters that focused on things like end of life care, pain management, the psychological needs of patients with advanced disease, or the importance and role of the family in caring for a patient with serious disease. There are only at the present time about 19 palliative care fellowship programs in the country. Symptom management has not had a high priority in the training of medical oncologists and specialists or of medical students in general. Are doctors and medical staff receiving training in palliative care?Ī. Less than 1 percent of the N.C.I.'s annual $2.9 billion budget goes to researching care. We have been so focused on the research for cure, we have not done the research for care. But they begin with the fact that it has not been given a high priority at the National Cancer Institute. What are some of the obstacles to providing palliative care to cancer patients?Ī. But we should be giving the same priority to patients with congestive heart failure and with neurologic conditions, such as stroke, A.L.S., Alzheimer's and multiple sclerosis. We've been somewhat better in our society about addressing these issues, particularly pain management, for cancer patients than we are for patients with other chronic medical diseases. We wrote this report because cancer patients have been the model. Does the lack of palliative care affect people other than cancer patients?Ī. Various social and cultural reasons have been suggested for why this is happening - racism, lower socioeconomic status, a traditional discounting of women's complaints - but the truth is that we don't know for sure. In one study, parents of children who died reported that even in the last days of life, pain was inadequately controlled in upwards of 30 or 40 percent of the children. So do the elderly in nursing homes, women in general and children. They also receive less adequate pain management. Only 7 percent of African-American cancer patients enter hospice compared with 14 percent of whites, though they have higher rates of cancer incidence and mortality. African-Americans clearly get less access to hospice care. Do some groups fare worse than others in receiving palliative care?Ī. It is aggressive, complex, requires specialized knowledge and can be very high tech. The idea that palliative care is euthanasia, that it passively allows people to die, that it is always low tech, that it does not require a specialized body of knowledge - all those things it is not. It emphasizes symptom control and supportive therapy. Its focus is on expanding the quality of life for patients throughout the continuum of their illness. Palliative care is the active total care of patients whose disease is no longer responsive to curative therapy.
What is palliative care and what is it not?Ī. She recently shared her thoughts about her field. She headed it until two years ago, when she stepped down to devote herself more fully as director of the Open Society Institute's Project on Death in America, a $45 million effort to alter the culture of dying through initiatives and research.
Foley founded the nation's first pain service in a cancer center. ''What was compelling to me was the extraordinary courage of patients with severe pain that was not being treated,'' she said.