I know that many of you are caregivers for a parent, an adult child, or an ailing spouse. It is stressful for the caregiver, because not only are “civilian” caregivers not trained for the role, but also because an increased anxiety level in a loved one in crises causes the caregiver’s personal stress level to rise, exponentially. This has been our situation, for the past month, as we battle with our Medicare supplement who have repeatedly denied renewals for my husband’s critical, life-sustaining drugs.
Stress??? Stress??? Ever see the cartoon drawings of the wired kitty with electrically charged lines of anxiety surrounding his form? Yes, that’s about how I have been feeling for almost a month. There have been hours of phone calls, numerous e-mailed, faxed, and snail-mailed letters asking for intersession from State agencies and my Federal representatives. It has been hard, unrelenting hours of stress and the knowledge that, if I fail to get the insurance company to yield, it could be an end-of-life issue for my spouse.
Yes, I am a caregiver. I am an untrained nurse, a harridan advocate, a psychologist on the fly, a pharmacist even though I nearly flunked high school chemistry, a tightrope walker without a net, a tilter at windmills tilted against us.
Are you a caregiver, too? Are you one of the chosen many who are sandwiched between parents’ needs and children’s needs or watching, helplessly, as your loved one spirals down? In the battle for sanity while maintaining quality of care of life for your loved ones, I propose that the following issues need to be addressed in the national debate about healthcare, in general, and our growing population of aging people, specifically:
- If a critical medication or procedure is denied for any reason, the patient should be considered “in crises” and, with direction from the patient’s medical provider, insurance companies should be required to provide interim medications or procedures for the patient until the crises has been resolved. In most cases, a critically ill patient needs immediate care and delays are both costly and potentially life threatening.
- When a caregiver states that the patient is in no condition to speak on his or her own behalf, it should be easier to get permission to represent your loved one. HIPAA is an important rule for everyone’s benefit, but when it slows down the process of getting necessary treatment, there needs to be a simple override.
- It should be incumbent on the insurer to keep the insured in the loop on the progress of a case rather than requiring the caregiver to make countless follow-up calls. When you are caring for a sick person, you have enough on your plate without having to repeat your requests to an endless series of untrained phone operators.
- Medicare needs to assign an ombudsman when questions arise surrounding a patient’s care. I would pay extra for that assistance. Most of us who are caregivers have little knowledge of the system and our rights and, in times of extreme stress, what we know can fly out of our heads. An ombudsman would be a valued member of the care team who would know the right person or agency to call to cut through red tape. An ombudsman could also defend the patient’s position in a calm voice, which I seldom have after four hours on the phone.
- In the case of a chronically or terminally ill patient who is not yet ready for hospice care, respite help should be available to assist the primary caregiver. The feeling that leaving your loved one alone constitutes abandonment of your duties is an open door to depression.
- There should be easily accessed lists of agencies that can help when Medicare subscribers hit the so-called donut hole or come to the limits of their coverage. When this happened to us, in December, I had a list of suggested agencies but contacting them was incumbent on me. Most often, I learned that my pension precluded us from getting help, we did not qualify for help, or that the agency did not cover our particular need. Research on the fly is particularly difficult when you are in high crisis mode.
- Psychological help for the caregiver should be easily available and accessible on an emergency basis. In addition, Medicare needs to consider the psychological needs of elders in stressful situations. Aging, today, does not mean settling into a chair and watching Jeopardy. More likely, it is about how many pills you have to split to make it through the month or if you have to pick between paying rent or buying healthful food. During the LBJ. days, when Medicare was created, nuclear families were still the norm and generations helped each other. With job mobility and children moving far from home or parents moving far from children, the issues for care are quite different. The conversation we need to have about this is overdue.
- If your loved one has a “No Extraordinary Measures” order in place, it is not up to the hospital to second guess the patient’s and the family’s wishes. The medical community needs to assume that the patient was of sound mind when the directive was written, and no hospital ethics committee has the right to override that directive especially not when it creates an extra level of guilt and pain for the patient’s agent.
- This is a partial list of agencies that may provide help to you if you are in dispute about a In patient’s insurance or care:
- Your State insurance commission
- Your State medical board
- Your State or County Consumer Board
- Eldercare counselors who can assist with paperwork
- Your Congressman or woman’s office (in our current situation, our Congresswoman’s assistant has been a godsend to us, making calls on our behalf to Medicare, and bringing the weight of the office to inquiries.)
After our crisis, this month, many of my social media friends sent this medical hack to me. It was not the first time I had seen it, but this time I took it seriously. It is something that you should keep nearby should the need for immediate action arise:
So, your doctor ordered a test or treatment and your company denied it. That is a typical cost saving method. Okay, here is what you do:
- Call the insurance company and tell them you want to speak with the HIPAA Compliance/ Privacy Officer. (By federal law, they have to have one).
- Then ask for the names as well as the credentials of every person accessing your record to make the decision of denial. By law, you have a right to that information.
- This will almost always reverse the decision very shortly rather than rather than admit that the committee is made of low paid high school graduates looking at “criteria words,” making the medical decision to deny your care. Even in the rare case that the decision in made by medical personnel, it is unlikely that it is made by a board certified doctor in that specialty and they do not want you to know this.
- Any refusal should be reported to the US Office of Civil Rights (OCR.gov) as a HIPAA violation.
A Call To Action
If you are a caregiver, please know that we are all in this together. You may have different information that would help others and I would urge you to share it in the comments section. You may be helping someone who needs your knowledge. We are each other’s best support and, as we Boomers age, there will be more of us joining the club. This is not an exclusive group. Help yourself and help your loved one by sharing the lessons you have learned when you’ve worked your way through your own medical crises.
In fact, after discussion with AFL’s wonderful editor, Jo Ann Lema, we have decided to start a Caregivers’ Support Group, on line and on the phone. Initially, we will set up a group so that we can talk to each other through the site. Once we have established a group, we will set up conference calls where we can get to know each other better, perhaps find a potential friend in your geographic area for support, and work on caring for ourselves as well the our loved ones.