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Redesigning PsychosocialServices to Accommodate the Needs of Cancer PatientsInternational 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 PennsylvaniaHealth Psychology Program, University of Groningen
We would all like cancer patients to have bettermanagement of their symptoms and betterunderstanding of what is possible in theirpersonal circumstances.
We would all like cancerpatients to feel that theycan talk to a healthcareprofessional about theirconcerns without feelingguilty about taking up theprofessional’s time.
An aspiration: “All patientswith cancer and their familiesshould expect and receivecancer care that ensures theprovision of appropriatepsychosocial health services.”
What is attainable and acceptable is conditionedby patient and family expectations, the healthsystem, and cultural context.Efforts to address the needs of cancer patientscan have unintended consequences, particularlywhen they are undertaken in dysfunctionalsystems with perverse incentives.
International standards are:•often culture bound•impractical for particular contexts•may reflect most pressing needs of otherhealth systems.
Look before you leap! Evaluate appropriateness Involve key stakeholders Monitor implementation
An American woman Susan Krantz, receivednational news attention when she complainedabout her physician charging her $50 for herhaving asked questions during her annual physical.Her insurance companypaid her physician for thephysical, but not foranswering her questions.She had not been warnedof the extra charge aheadof time.
Talking to patients as a (billable) procedureConversations with the meter running“We’re not paid to solvepatients’ problems, we arepaid to do procedures.”
International and national organizationsincreasingly mandate routine screening forpsychological distress as a condition foraccreditation.Is routine screening for distress feasible in yoursetting and will it improve patient outcomes?
The promise of screening•Cheap, quick•Identifies distress and depression that wouldotherwise be undetected•Uncovers unmet needs•Gives voice to otherwise silent or unheardpatients in need
Challenges that come with screening fordistress•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 havestandard or ready solutions
Does your culture have a translation of“psychological distress” that patients willunderstand?
Monitoring screening for distress with quality of care indicators
Oncologists cannot close their medical recordswithout indicating whether they have asked apatient about distress.Oncologists must indicate what action was takenif a patient report being distressed.Oncologists can comply with quality indicators byasking simply “you feeling depressed?” andprescribing antidepressants to patients whoanswer “yes” without formal diagnosis, patienteducation, or follow-up.
A significant proportion of breast cancer patientsin the United States are prescribed anantidepressant without ever having a two weeksmood disturbance in their life.
Raffle, A and Gray, M. (2007). Screening:Evidence and Practice. Oxford Press.Screening must be delivered in a well functioningtotal system if it is to achieve the best chance ofmaximum benefit and minimum harm. Thesystem needs to include everything from theidentification of those to be invited right throughto follow-up after intervention for those found tohave a problem.
Alternative to screening:•Give patients time to talk and listen to them,dont let screening for distress get in the way.•Dont require cancer patients to interact throughcomputer touch screen assessments.•Do give them the opportunity to talk about theirexperiences, their needs, their concerns, andtheir preferences regardless of their level ofdistress.
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.
Current Dutch practices do not comply withproposed international guidelines for mandatedscreening.All cancer patients, not only those who screenpositive for distress, are offered opportunity totalk to a professional about their needs andconcerns, unless they explicitly indicate they donot want to do so.
What are goals for psychosocial care to strivefor in any culture?•Better pain management and symptom control•Ready access to support and information,informal services•More specialized, intensive services for high riskpatients and conspicuous problems
Hospice is not abattlefield in the "war ondrugs," but it may beunfairly considered assuch.
"Nothing would have a moreimmediate effect on quality oflife and relief from suffering,not only for the cancerpatients but also for theirfamilies, than implementingthe knowledge accumulatedin the field of palliative care."-Cancer and Palliative Care Unit of theWorld Health Organization
Many patient concerns can be addressed withinformation, support and attention, and follow up.Fewer patients need more specialized services,but they should have access to them, and theservices should be evidence based.
Smoking cessation for cancer patients andcaregiversSmoking not only causescancer, but can lead tosignificant morbidityduring treatment andeven cause treatmentinterruption.
Don’t neglect needs and resources offamily members•Wives vs. husbands•Monitoring wound healing, side effects•Enlist their support for better pain control andsymptom control•Provide ready access to support andinformation, informal services
To overcome limitations in the availability ofpsychosocial services, is there a place in yourculture forMobilizing existing community resources?Volunteerism?Public education to make better psychosocialcare for cancer patients a shared vision?Identification of cancer champions and targetedphilanthropy?
In designing psychosocialservices, how can we engagecancer patients, and familycaregivers in specifying theirpriorities for the most neededservices?
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