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Suffering in Silence: Patient Finds Mental Health Care Gap in Cancer Treatment

  • Norris Cotton Cancer Center patient Terry Grigsby tends to her garden at her home in Lebanon, N.H., on July 25, 2018. Grigsby's therapist told her to do something she loves every day, working in her garden is that for Grisby. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Terry Grigsby brushes her cat Goldie at her apartment in Lebanon, N.H. on July 25, 2018. A Norris Cotton Cancer Center patient, Grigsby said she's received great care for her cancer, but has struggled to get the care she needs for her mental health. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission.

  • In her Lebanon, N.H. apartment Terry Grigsby puts dishes away on July 25, 2018. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.



Valley News Staff Writer
Saturday, July 28, 2018

Lebanon — Terry Grigsby, a reading specialist who has been battling leukemia for nearly six years, has enjoyed participating in a good number of the Norris Cotton Cancer Center’s programs available to patients, survivors and caregivers.

The wide array of offerings includes support groups, acupressure, art classes, tai chi, yoga, spiritual support and Reiki, to name some of those listed in a brochure Grigsby brought to an interview at the Valley News office in late June.

“The only thing they don’t have in here is psychiatry,” Grigsby said as she browsed the brochure.

Grigsby, who said she’s received great care for her cancer, has needed psychiatric help, including prescription medications. But it’s help she has found difficult to come by.

Norris Cotton’s director said the problem soon will be at least somewhat alleviated by the arrival of a psychiatric nurse practitioner. Grigsby, however, said she has heard that before. And it’s a problem that, once solved, may return, because labor shortages in the mental health field are so acute.

Over the past several months, Grigsby, a 72-year-old who served on the Lebanon City Council more than a decade ago and worked in the Lebanon School District for 23 years, has been in touch with leaders at the cancer center and Dartmouth-Hitchcock in hopes that her advocacy will persuade them to hire a full-time psychiatrist for the cancer center.

Grigsby was first diagnosed with chronic lymphocytic leukemia, a cancer of the blood and bone marrow, in October 2012. During the ups and downs of her ongoing treatment for the disease — which has included a subsequent diagnosis of a chemotherapy-resistant form of the cancer — she developed depression and anxiety.

She has navigated the system to find the support she needs. She meets with a therapist regularly and receives prescriptions for medication through Dartmouth-Hitchcock’s resident psychiatrists. Her treatment is sufficient so that she is able to enjoy her grandchildren and her garden, she said.

But she worries that others struggling with the same mental health problems may not be able to get the support they need.

“Please make every effort to care for sick people’s brains as well as you do their bodies,” Grigsby wrote in a November letter to D-H CEO Joanne Conroy.

The challenge isn’t so much that the cancer center and hospital’s leaders need to be convinced of the need for psychiatric care for cancer patients, or for anyone else, for that matter — it’s that there are funding and workforce challenges that make it difficult to adequately staff such a service.

“We would love to offer more services if it was economically possible to do so,” said Dr. Will Torrey, vice chairman for clinical services for D-H’s Psychiatry Department. “ ... Psychiatrists cost more than twice as much than they can bring back in insurance payments when you keep them very busy.”

It also can take a long time to fill vacant positions in the mental health field. For example, the cancer center has had an opening for a psychiatric advanced nurse practitioner since last Christmas, Torrey said.

The challenges in hiring mental health workers and paying for their services are not isolated to New Hampshire.

“It’s hard to find people that are trained and interested in this area” of medicine, said Dr. William Pirl, vice chairman of psychosocial oncology at Dana-Farber Cancer Institute in Boston. “Pretty much every cancer center has job openings.”

As with Norris Cotton, Pirl said his service is only partially covered by billing.

But he said it’s worth it, for the institution, its patients and for him personally.

There are “some areas of mental health you can definitely see the positive results of your work very easily,” he said.

At Dana-Farber, Pirl said, his team provides patients with evaluations, psychotherapy, medications and follow-up care. They sometimes consult with oncologists to discuss the mental health side effects of patients’ medications and sort out whether an alternative might be available.

Often, Pirl said, his role is to let cancer patients know that it’s very common to experience low moods and anxiety, and it’s not their fault that they feel this way. He often feels he has to counteract the sense that some cancer patients have that they need to be strong and that, by having such feelings, they may be letting people down.

He estimates that his department sees about 5 percent of Dana-Farber’s patients. But he hopes that increasing screening of the general patient population will help them to serve more of the approximately 30 percent of cancer patients who might benefit from some form of intervention in general.

“Even though we are one of the larger services in the U.S. ... it’s hard to reach everybody,” Pirl said.

Still, in an interview this month, Dr. Steve Leach, the Norris Cotton director, said the center does what it can to support mental health services through a six-figure subsidy made possible by philanthropic support. Two D-H psychologists — one who provides psychotherapy and the other who helps assess cognitive deficits in patients with brain and neck tumors — spend some time with cancer center patients, and soon Leach expects to hire a new advanced practice psychiatric nurse who will be able to prescribe medication, he said.

“We want to do more,” he said. “We recognize that this is a need that patients have.”

Pancreatic cancer, Leach’s area of specialty, is particularly associated with depression, which can be an early symptom of the disease, he said.

In patients with pancreatic cancer, those who present with depression often have a poorer diagnosis than those who do not, he said. So the mental health challenges cancer patients face clearly go beyond simply facing a difficult diagnosis and navigating treatment.

“It’s widely known among oncologists that cancer patients often present with depression,” he said. “There are less than completely understood biologic links.”

Surprisingly, symptoms of depression sometimes don’t appear until patients have gotten past the most acute stage of their cancer and they begin to return to their normal activities, Leach said.

“As we get better and better at curing cancer, we may actually see increasing demand for mental health services among cancer survivors,” he said.

Because patients suffering from mental health problems may not tell providers how they are feeling, the center is making efforts to expand screening for depression, anxiety and other forms of distress, Leach said. The nurses currently screen medical oncology patients with a tool called a “distress thermometer,” which they soon plan to expand to patients in radiation oncology, he said.

“Just like in cancer, early detection is better,” he said.

The screening includes questions intended to assess the stress a patient may feel related to their regular daily activities, as well as to family, emotional and spiritual stresses, Leach said. He said he soon hopes to add in an assessment of financial stresses.

Once patients’ degrees of distress have been evaluated, Leach said, care teams — which may include providers such as social workers, psychologists, chaplains, palliative care providers and occupational therapists — will put together a care plan and refer patients to the resources they need, Leach said.

In addition, Leach said the cancer center is in the process of hiring seven new oncology nurse navigators. These navigators will help guide cancer patients and their families through the sometimes complicated maze of cancer treatment.

The idea, which sprang from one such navigator based at the Manchester branch of Norris Cotton Cancer Center, aims to provide patients with a “personal GPS,” Leach said.

These navigators, Leach said, also will be helpful in identifying patients who may be struggling with depression, anxiety or other stress.

In addition, Leach said, the center is proud of the patient support services, which it is able to offer due to money raised through the annual Prouty event.

“Last year, through the generosity of the community through The ​​Prouty, we delivered 23,000 episodes of free-of-charge patient and family support,” Leach said.

Such support can help alleviate some of the stress patients and families might feel, he said.

Inpatient cancer patients also have access to D-H’s full slate of behavioral health services, and outpatient cancer patients have access to the psychiatry department’s outpatient services.

However, Grigsby, who had an appointment with one of D-H’s new psychiatric residents last week, said the wait for appointments can be long. For example, she said the resident said she should come back in four to six weeks for a medication check, but the only appointments available were in two or 11 weeks.

The wait also can be long for people with problems that are growing more acute, Grigsby said, citing a friend’s experience. The fellow cancer survivor told Grigsby she was having thoughts of suicide this winter but couldn’t get an appointment with a therapist at Dartmouth-Hitchcock Medical Center until 16 days later, Grigsby said. (DHMC notes its psychiatry department does provide emergency services on a 24/7 basis by telephone or through the Emergency Department).

But the long wait for a scheduled appointment is a situation that Grigsby said is “not acceptable.”

When the cancer center-supported therapists and nurse practitioner are in place — one therapist has been out on family leave, and the new nurse practitioner won’t start until this fall — they have the effect of limiting the wait time for an appointment for cancer patients to weeks, Torrey said.

In comparison, it can take months for patients not being treated at the cancer center to get an outpatient appointment with a therapist, he said.

“We wish it was right-as-needed for all populations,” Torrey said. “But the cancer center support makes a big difference.”

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.