Redesigning Psychosocial Services to Accommodate the Needs of Cancer Patients International Workshop on Palliative Care to the Geriatric Oncology Patient Muscat, Sultanate of Oman, February 10-13, 2013 James C. Coyne, Ph.D. Abramson Cancer Center, University of Pennsylvania Health Psychology Program, University of Groningen

We would all like cancer patients to have better management of their symptoms and better understanding of what is possible in their personal circumstances. 2

We would all like cancer patients to feel that they can talk to a healthcare professional about their concerns without feeling guilty about taking up the professional’s time.

An aspiration: “All patients with cancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services.”

What is attainable and acceptable is conditioned by patient and family expectations, the health system, and cultural context. Efforts to address the needs of cancer patients can have unintended consequences, particularly when they are undertaken in dysfunctional systems with perverse incentives. 5

International standards are: often culture bound impractical for particular contexts may reflect most pressing needs of other health systems.

Look before you leap! Evaluate appropriateness Involve key stakeholders Monitor implementation

An American woman Susan Krantz, received national news attention when she complained about her physician charging her $50 for her having asked questions during her annual physical. Her insurance company paid her physician for the physical, but not for answering her questions. She had not been warned of the extra charge ahead of time. 8

Talking to patients as a (billable) procedure Conversations with the meter running “We’re not paid to solve patients’ problems, we are paid to do procedures.” 9

International and national organizations increasingly mandate routine screening for psychological distress as a condition for accreditation. Is routine screening for distress feasible in your setting and will it improve patient outcomes?

The promise of screening Cheap, quick Identifies distress and depression that would otherwise be undetected Uncovers unmet needs Gives voice to otherwise silent or unheard patients in need 12

Challenges that come with screening for distress What do scores mean? Requires follow up to resolve positive screens, involving staff and patient time and resources Many needs that are identified will not have standard or ready solutions 13

Does your culture have a translation of “psychological distress” that patients will understand?

Monitoring screening for distress with quality of care indicators 15

Oncologists cannot close their medical records without indicating whether they have asked a patient about distress. Oncologists must indicate what action was taken if a patient report being distressed. Oncologists can comply with quality indicators by asking simply “you feeling depressed?” and prescribing antidepressants to patients who answer “yes” without formal diagnosis, patient education, or follow-up. 16

A significant proportion of breast cancer patients in the United States are prescribed an antidepressant without ever having a two weeks mood disturbance in their life. 17

Raffle, A and Gray, M. (2007). Screening: Evidence and Practice Raffle, A and Gray, M. (2007). Screening: Evidence and Practice. Oxford Press. Screening must be delivered in a well functioning total system if it is to achieve the best chance of maximum benefit and minimum harm. The system needs to include everything from the identification of those to be invited right through to follow-up after intervention for those found to have a problem.

Alternative to screening: Give patients time to talk and listen to them, don't let screening for distress get in the way. Don't require cancer patients to interact through computer touch screen assessments. Do give them the opportunity to talk about their experiences, their needs, their concerns, and their preferences regardless of their level of distress. 19

Alternative to screening: Enhanced support, access to services, and follow up for patients already known to be distressed or socially disadvantaged. Provide ready access for patients to discuss unmet needs with professional and peer counselors regardless of level of distress. Increase resources for addressing health disparities in access to psychosocial services. 20

Current Dutch practices do not comply with proposed international guidelines for mandated screening. All cancer patients, not only those who screen positive for distress, are offered opportunity to talk to a professional about their needs and concerns, unless they explicitly indicate they do not want to do so. 21

What are goals for psychosocial care to strive for in any culture? Better pain management and symptom control Ready access to support and information, informal services More specialized, intensive services for high risk patients and conspicuous problems

Hospice is not a battlefield in the "war on drugs," but it may be unfairly considered as such.

"Nothing would have a more immediate effect on quality of life and relief from suffering, not only for the cancer patients but also for their families, than implementing the knowledge accumulated in the field of palliative care." -Cancer and Palliative Care Unit of the World Health Organization

Many patient concerns can be addressed with information, support and attention, and follow up. Fewer patients need more specialized services, but they should have access to them, and the services should be evidence based. 25

Smoking cessation for cancer patients and caregivers Smoking not only causes cancer, but can lead to significant morbidity during treatment and even cause treatment interruption.

Don’t neglect needs and resources of family members Wives vs. husbands Monitoring wound healing, side effects Enlist their support for better pain control and symptom control Provide ready access to support and information, informal services

Mobilizing existing community resources? Volunteerism? To overcome limitations in the availability of psychosocial services, is there a place in your culture for Mobilizing existing community resources? Volunteerism? Public education to make better psychosocial care for cancer patients a shared vision? Identification of cancer champions and targeted philanthropy? 28

In designing psychosocial services, how can we engage cancer patients, and family caregivers in specifying their priorities for the most needed services?

Thank you! jcoynester@gmail.com Follow me on Twitter @CoyneoftheRealm