Friday, July 15, 2016

Home or Hospice – Making the Choice for Home Nursing Care

     “In the United States, about 40 million people provide unpaid care to an ill or disabled adult.” (AARP, 2015)  Many of the readers of Sixty and Me are in this situation now or might be in the future. Usually, the patient and caregiver would prefer this care be given at home, if possible.
In June of 2004, my wife, Tina Su Cooper, and I were given a medical choice: home or hospice. Tina had waged a 100-day battle against a near-fatal respiratory infection due to her multiple sclerosis. She had entered the hospital near death and paraplegic. She emerged near death and quadriplegic, on a ventilator and fed and medicated through a gastric tube.
Choosing hospice care would mean that efforts would be limited to easing her transition to death. Choosing skilled home nursing care would allow us to fight to keep her alive. Our memoir, Ting and I,  ( tells our story in much more detail.
Together, we decided to continue the battle for Tina’s life at home. This involved setting up the equipment, hiring personnel, and establishing procedures mirroring those of the hospital’s critical care unit. We have succeeded at this for a dozen years.
In this article I will discuss our earliest challenges in giving her the round-the-clock care she needed in our home. Finding the right nurses is very important for any caregiver who wants to provide the best care possible at home. Staffing problems arose. We soon had to decide whether to continue with the nursing agency we had or hire and manage the nurses ourselves.
In a separate article I will talk about many tips for selecting a home care nurse. Here I will focus on the two options you have for finding nursing staff: use an agency or become “the agency” yourself.
Benefits of Using a Home Care Nursing Agency
Unless you have done this before or are a medical professional, you will have little idea of the complexity of providing skilled nursing care. Our head nurse (Diane R. Beggin, RN) and I have spent the past year working on a book, How to Manage Nursing Care at Home, due out in late 2016.  It is filled with material we learned from this experience; some of the lessons having been hard-won.
If you start with an agency, as we did, you will get immediate staffing, and the agency will set up procedures for assuring that proper feeding, treatments, medications, toileting, exercises, etc., are instituted and recorded. They will assure that the nurse is certified (as an RN, Registered Professional Nurse, or as an LPN, Licensed Professional Nurse), and bonded or otherwise insured as trustworthy. You will pay substantially more for the nurse than she will get, as the agency has its overheads. One challenge is that these nurses take direction from their agency, not you.
The agency takes care of legal issues and will make sure that various governmental regulations are met, including wage reporting and tax-paying. If the need for nursing is “temporary,” using an agency will likely be preferable to hiring and managing the staff yourself
Consider Becoming “the Agency”
The agency we got started with was recommended by the hospital. It did a pretty good job of finding suitable nurses and staffing our initial round-the-clock needs. However, the quality of the nurses was inconsistent. We found that we could pay the nurses about 50% more than they were getting and still charge our insurer less than what the agency was charging.
What We Concluded
Eventually, we found that managing the nursing care ourselves gave us a better selection of nurses and greater control of what was being done, but it required our developing procedures for managing the care and then implementing them.
Factors favoring separating from the agency included my being retired, thus having time to devote to care and management; the possible long-term nature of Tina’s need for nursing, thus making the investment in setting up the procedures more worthwhile; the availability of skilled nursing help obtainable through simple advertising; the help of both legal and accounting experts to guide us. If these conditions apply for you, then managing nursing care at your home may be the better choice than relying on an agency.
Managing Nursing Care at Home
Once we became responsible for hiring and managing our staff, we had a whole new set of challenges. We will discuss this in a follow-up article.

Have you or anyone you know ever had to organize nursing care in the home? What were some of the challenges faced? 
Douglas Winslow Cooper, Ph.D.
A former Harvard science professor,  Dr. Cooper continues to publish, and he helps others write and publish their books, via  His life's dominant theme has been a half-century romance with Tina Su Cooper, his wife, now quadriplegic due to multiple sclerosis and receiving 24/7 nursing care at home, as discussed at their website here.

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