When diagnosed with cancer, many people with severe mental illness do not receive the cancer treatment they need. Changing that is the goal of a program led by Kelly Irwin, MD, a psychiatrist at the Mass General Cancer Center. Known as the Collaborative Care and Community Engagement Program, the program is designed to ensure intensive collaboration of specialists from oncology and psychiatry to best treat this underserved population.
People with severe mental illness who are diagnosed with cancer are two to four times more likely than others to die of the cancer.
Currently, people with severe mental illness who are diagnosed with cancer are two to four times more likely than others to die of the cancer. Increased cancer mortality is a key reason that people with severe mental illness are dying 15-25 years younger than the general population. Dr. Irwin’s research shows that having a psychiatrist involved from the time cancer is diagnosed is an important predictor of which patients complete cancer treatment.
Nearly ten million U.S. adults have either schizophrenia, which distorts the way a person thinks and perceives reality, or bipolar disorder, which involves mood changes that cycle from mania to depression.
The symptoms of severe mental illness can impact cancer treatment, explains Dr. Irwin. It can be hard to trust doctors. A patient may initially refuse needed care without understanding the life and death consequences. Cognitive symptoms can make it challenging to understand a new diagnosis. Many patients with severe mental illness are coping with poverty, homelessness and low social support, which make it harder to navigate cancer treatment.
Dr. Irwin’s program strives to make sure patients have a full understanding of the risks and benefits each time a treatment decision is made.
Through the Collaborative Care and Community Engagement Program, patients and caregivers can access a social worker case manager, who advocates for the patient and coordinates care. For many patients, their primary caregivers may be group home staff or community support workers through the Department of Mental Health.
Dr. Irwin’s program strives to make sure patients have a full understanding of the risks and benefits each time a treatment decision is made. Home visits are essential, especially when someone refuses to come for treatment. Bringing care to the patient is a part of this innovative program and surgeons and medical oncologists have joined her on such visits.
“With cancer you can’t wait,” she says.
The effort can take hours of trust building and communication, as it did with Jonathan Archibald. Jonathan died in March 2016 at age 42 after 2 years with colorectal cancer and 28 years with schizoaffective disorder, which includes delusions and paranoia as well as bipolar disorder. As his medical issues worsened, so did his psychiatric issues. His thinking was erratic.
It was never easy, his parents Henry and Joan Archibald say. “He didn’t want to come to the hospital and sometimes it was an all-day effort to get him here,” Henry says. “But no one gave up on him.”
Through the persistence of his parents, Dr. Irwin and his oncologists, Jonathan agreed to have surgery and try chemotherapy and radiation. “We had so many angels at Mass General, people like Dr. Irwin who went above and beyond to help Jonathan,” Joan adds.
With intensive medication adjustment, Jonathan’s thinking cleared. As his cancer progressed, Jonathan said he wanted to focus care on relief of suffering. Close collaboration between Dr. Irwin and the oncology team ensured that Jonathan’s wishes were supported, and he moved to the inpatient hospice service at Mass General.
In his mother’s words, “As he was dying, Jonathan was peaceful and able to communicate his values and choices. I was able to stop being his caregiver and be his mother.”
Dr. Irwin is conducting the first pilot study of proactive psychiatry consultation for patients with mental illness and cancer. For the 30 people in the pilot, Dr. Irwin’s approach has been powerful and effective. “People who were refusing care are now getting it and feeling respected in the process,” says Dr. Irwin.
Unmet Mental Illness Need
With the success of the pilot, the program needs philanthropic support to permanently establish this clinical and research program, and reach more patients. Much of what team members do is not reimbursable by health insurance, such as home visits and care coordination, which are integral to caring for this population. By establishing a second opinion service, Dr. Irwin can also increase access to cancer care for patients with severe mental illness in the community.
“It’s been a gift to me to be able to help people like Jonathan,” Dr. Irwin says. “It’s a huge unmet need.”
For more information on supporting Dr. Irwin’s research and clinical care program, please contact us.