The Healthcare Experience….Firsthand

Six weeks ago, I started writing this post. I think it is time to put finished to it.

The second half of May and first half of June were a challenging time for us. Two elderly parents had acute medical needs at the same time in different cities. Both were hospitalized, one in a critical care unit.

During this time I found myself thinking about different aspects of the experience. For those of you who have not yet had the responsibility to care for an elderly parent, these issues might be interesting to look forward to. For those of you who are our age-mates, you will probably have additional issues to offer.

1. Medicare mostly works. (Medicare with a secondary insurance works even better.)
2. Health care workers, for the most part, really seem to care.
3. The quality of care you receive depends upon your ability to advocate for yourself…or to have surrogate advocates.
4. In the heat of the emotional moment, having siblings helps, even if they are in a different state.
5. A Health care Surrogate, an Advance Directive, or a Living Will are not optional.
6. The toll on family caregivers is huge.

1. Medicare mostly works. Medicare with a secondary insurance works better. I know doctors complain about Medicare and the amount they are reimbursed and about dealing with Medicare claims. I also know that health care services are provided without question when Medicare is the payer. In an emergency situation, not having to be concerned about the method of payment allows everyone to focus on the care of the patient. I think there is a great deal to be valued in that.

2. Health care workers, for the most part, really seem to care. Health care workers are overworked and hospitals are understaffed. Nurses and nurse technicians are responsible for so much documentation that they often feel that direct patient care gets shortchanged. In two separate hospitals in two parts of Florida, my experience was that hospital staff did an excellent job in spite of the demands on them…and that they really cared about their patients and about the job they were doing for them.

3. The quality of care you receive depends upon your ability to advocate for yourself…or to have surrogate advocates. Without a spouse and/or children or some other sort of advocate, people do not get as good care as when an advocate is present. The reasons are simple. A sick person is not in any position to ask for assistance, to question the treatment being provided, to assure the medication they have been handed is the correct one, or to guarantee that they understand the instructions they have been given.  If no one is present to say that they are hard of hearing, verbal instructions and questions may be forever lost. Even if a staff person eventually realizes they are not being heard, all of the previous interaction including important questions about history, may have been in vain. Without another person who understands how to go between the patient and the staff, a person may well get sicker because they could not ask for help or did not want to be a bother, could not question the protocols being followed and give benefit of their personal experience with previous treatment, did not recognize the medication they were given or understand the name and function of the medicine when the nurse administered it, or did not understand the follow-up instructions and the rationale for giving them.

4. In the heat of the emotional moment, having siblings helps, even if they are in a different state. Siblings are an asset when dealing with ill parents. Having others with whom to discuss the events and issues is crucial. They help generate additional questions that should be asked. They remind one another of family health history and events that can easily be forgotten. They can share the responsibility for sitting with and encouraging Mom or Dad. Having others to participate in important decisions if a parent is not capable of making those decisions for themselves is invaluable.

5. A Health care Surrogate, an Advance Directive, or a Living Will are not optional. Rightfully, hospitals and health care workers do not want to make decisions for a patient. They especially do not want to make decisions that are inconsistent with the wishes of the patient. They will strongly and clearly recommend what they see to be the best course of care and, with the patient’s permission, they will implement those recommendations up to the limits that the patient sets. If the patient has no person or document setting the limits, all care will be provided as the staff recommends and all of the care they recommend will be provided. Being clear about the limits is only fair to one’s children and essential to one’s care providers.

6. The toll on family caregivers is huge. No matter the outcome of the health care incident, the emotional and physical cost to family caregivers cannot be underestimated, especially if the other elderly parent is one of those caregivers. We most often think about the sick person and how they handled the health care event. It is important that we also think about the family members who participated in the caregiving for Mom or Dad while they were in the hospital and during the caretaking that follows.

My quick Google search for “caregiving” yielded 2,270,000 results. “Family care giving for older adults” yielded 924,000 results. Obviously, this is an area in which interest has exploded. While many of the search results are for some sort of paid service, adding the word “free” at the end still resulted in 514,000 hits. Many communities offer respite care and support groups through their local hospice agencies. Online information and organizations abound. As we baby-boomers age, I fully expect that this will become an industry in itself, with paid and volunteer and not-for-profit organizations.

In the meantime, we are very glad that our elderly parents made it through this round with the health care system. I wonder what your experiences with elder care and our health system have been. Where do you see us heading and what role do you see for behavioral health care in this elder care world?

Please share you comments below.