Helpless--Hopeless--Depression
My goal as a CCS is to help patients achieve/improve their self-management skills. "Patient Activation" is a powerful concept and I am pleased that many of my patients have definitely moved from being passive observers to very active members of their own health care team. One of my patients told me in our initial interview that she'd had diabetes for a long time but she didn't feel it was very important. Her doctor didn't act like it was much of a problem and had given her the same oral agent at the same dose for several years. She didn't check her blood sugars because she really didn't know what the numbers meant anyway. Besides, her doctor never asked what they were. Six months later, having changed doctors and been referred to the Pursuing Perfection Progam, she called me, concerned that her sugars had been staying near 200 for several weeks. "What are we going to do about that?" she demanded. "This can't go on!" That is the kind of response I like to get. It shows she's really developed excellent skills and knows how to use her team to get what she needs.
So that's a success and we CCSs have many more. But I am worried about other patients of mine. I have several clients/patients who are facing such difficulties in their daily lives that it seems almost impossible for them to achieve an improved level of self-activation. Most of them have a diagnosis of depression and are on appropriate medications. . . but they need so much more. All the additional therapy in the world cannot change what they face when they walk out the door of the clinic: Many are unable to work because of their health problems. Some have even lost the few benefits they had from MEDICAID or the state supported Basic Health Insurance. How can I encourage these diabetics to control their selection of carbohydrates when they in fact often do not know where their next meal is coming from? Self-activation requires a strong sense of self and a sense of hope and possibility that things can change for the better. When my patients face the holidays with the threat of turned off electricity or an increase in rent, when they have nothing to offer their children for Christmas, I have a very difficult time engaging them in learning about their disease and how to better manage it.
Depression is pervasive. I honestly don't know if it's the chicken or the egg scenario. Do our patients become depressed because of their other illnesses and desperate socioeconomic situation or does the depression so immobilize them that they have fewer mental, physical, financial and spiritual resources to avoid developing more illness? I do not know. I just know that I see depression often.
What can be done? How are these patients different from my success stories? Social supports seem to be very important. In those patients who have improved, there have been one or more of the following: family or concerned friends and neighbors; a deep spiritual faith; a strong sense of self; a positive "can do" attitude.
Originally, the proposal for our Pursuing Perfection grant included a social worker but once the grant was awarded for less money than had been budgeted, something had to go. One of the sacrifices was that position. Should we get more funds, I believe it is essential to hire a social worker to help us with those patients who desperately need that kind of help. Maslow's theory of the Hierarchy of Needs demonstrates that basic needs must be met before higher levels of functioning can be attempted. These patients are not being NONCOMPLIANT, they are merely trying to survive as best they can.*
*On a personal note, I must admit I become frustrated and angry every time I have to tilt another windmill because our health care system is so unwieldy and insensitive to the needs of patients which the system is supposedly there to serve.
I have a patient who lost his Basic Health insurance coverage because he did not respond within 10 days to a letter asking for more information about his eligibility. The letter is in English. The patient is illiterate in both Spanish and English! No one attempted to phone him. Because he did not meet the deadline, he is now ineligible to reapply for 1 year! I have another patient who was refused MEDICAID because his unemployment income was $570, $20 too high. (Who possibly can survive with only a $570/month total assistance?!) He too could not read his English letter explaining he could appeal. His unemployment has now run out. His Social Security application was denied so he must reapply (I've been told over 60% are denied outright and to expect to have to reapply). I have an 80+ patient who won't test her blood sugars because Medicare has not reimbursed her for her strips and at $100/mo she cannot affort the strips in addition to all her meds. I have a Type 1 diabetic who has finally gotten off welfare and has lost MEDICAID because he has a job. However, his new medical insurance has high co-pays, does not cover all his current medications, and he is terrified that he'll lose his job because of illness and missed work. He's earning a subsistence living, has no car, and cannot be off work to get any additional education to prepare himself to advance. He's essentially trapped in poverty. I have a family of three living in a motel waiting to hear when they'll be eligible for Section 8 Housing; they've been told it can be "anytime from now till 18 months" when they reopen the list. Meantime, they attempt to prepare appropriate meals with a small microwave. They spend all their welfare on the cost of housing. They only can eat what they get from the Food Bank and their very small food coupons ($20/mo).
Yes, I feel helpless in the face of these many needs. All I can do is provide the support, guidance and referrals to other agencies to help. I have resolved to become more politically active on behalf of these who cannot help themselves.
2:59:20 PM
