Help for Healing

Bitter & Sweet, living daily with grief

Memo to the President

2 Comments

I was asked to put my concerns about Dad’s experience at rehab to give to some higher up person. It took me a while with how busy life is, but here is the summary. Hopefully, it will make others aware of what to advocate for if they are in our medical system.

“Thank you for taking the time to look at my concerns. The reason I have taken the time to put this together, is that I have a true concern and passion for helping to improve the quality of care in our medical facilities. My dad went to your facility on Saturday, Nov 25 of this year and I am hoping my observations will spark some changes that will improve future patients’ experiences there.

Overall, most of the staff were pleasant, which is important for people to feel comfortable. However, it is even more important that they are effective in giving patients what is needed. Overall, there is a severe lack of information available- for patients, their families, and even the staff. Every day I walked in and had to start an investigation to find out who Dad’s nurse and aide were. Not only did he not know, but it would take several attempts with different staff to find out as well.

A very simple solution would be to have small dry erase boards in every room like most facilities have. Rehab doesn’t need the large ones with tons of information, but just a small one for nurse/aide information. Having one in the nurses’ station would be helpful as well. Staff literally just looked at me and said, “I’m not assigned to him. I don’t know who is or where to look to find out.”

Another solution, would be to train staff to develop a much better attitude for helping. In other words, staff should really be saying, “I don’t know the answer but I will find out for you.” And then they actually find out and return with the information. This seems like common sense, but it was completely lacking there with the exception of one or two nurses that would put the effort in. I would literally spend a significant amount of time walking around your halls trying to find things out.

Along those lines, there also was no atmosphere of team work. Nurses would not do “aide work” even if they were with the patient. Aides wouldn’t help if asked if dad wasn’t “their assignment.”(And then they were unable to tell me who he was assigned to!) I have been with Dad in several facilities and a sense of teamwork is definitely possible. Not surprisingly, those few who were helpful, were also the same individuals that would find out answers for you.

Someone mentioned at one point that the schedule was supposed to enhance continuity of care. I honestly don’t remember two days in a row where he had the same nurse or aide, much less several days in a row. Perhaps it happened for a day or two, but it definitely did not seem like there was continuity of care.

At one hospital, at shift change, every nurse comes in with the next nurse on shift and introduces the patient to the nurse. That is incredibly helpful and creates a warm and safe feeling of trust in the care being received.

I recognize that some of my frustrations are part of the bigger mountain of a problem with the medical “rules” in general that seem to lack the patient’s well-being as the priority. When medical systems became businesses, the focus shifted on making money, away from patient health. It is maddening when you are a caretaker/advocate for someone and come up against this. Over 98% of patients do not have an advocate to help them. I have to consistently be the squeaky wheel in order to get simple things in place.

For example, I discovered (rather than anyone on Dad’s medical team) that he did not require a sling. This was crucial information that would change the entire course of rehab. I let the unit nurse know and she said she would check the orders and call who was necessary and get back to me. It was MY follow up that took several phone calls back and forth with doctors and your facility that finally got “orders” changed but it took two and a half business days to make it happen. That might not sound like much, but when it is your quality of life and treatment that is at stake, that can feel like a lifetime. One day after the sling issue was resolved, I arrived to find Dad wearing the sling again. He said “the woman said he had to wear it.” Of course, it took me running around the hospital to find out what was going on. I finally got to the nurse on duty who said she didn’t know who did it but they must not have read the orders. She had absolutely no concern in finding out who it was so it could be addressed. And she missed the point completely that medically, this was actually something that would set Dad’s therapy back if he continued to wear it. No follow through, no concern. And what if I wasn’t there?

Dad also came in to your facility with stitches in his head. I started the very first day of admission to ask staff to make sure they were removed on the day they were supposed to be. It took a ridiculous amount of bugging and nagging to make it happen. What needed to happen was that a doctor literally spend several seconds looking at his head in order to give permission to the nurses to take them out. Taking them out was only a matter of minutes as well. At one point, the excuse was that the doctor that was in that day, was not the doctor that could be billed for it. That is ridiculous. Again, the facility’s profit is the concern, not the patient’s care. The billing is not the patient’s worry. If your staff can’t take five minutes (literally) to do something so simple for the good of the patient, there is a very serious problem.

One morning, I arrived at 9:10 am to find my dad on the toilet, still in a hospital gown. He was furious. After investigating, I found out that the aide who put him on the toilet went on break, leaving him there and not telling anyone. He had been waiting quite a while. When there is no teamwork, the other staff isn’t going to answer a call light if it’s not their assigned room. I have no idea why he wasn’t dressed either.

The same day, I found his room in bad condition. The bed was a mess. The tray table had red thickened liquid dried on which couldn’t even be removed with soap and water. The same stuff was on the floor, also dried on. Urine was in the urinal, which causes the room to smell. Most disturbing of all, was the used diaper in the middle of the floor. I showed the room to the nurse who said she reported it. It was absolutely inexcusable.

Another time, I came in to find Dad’s dirty clothes lying in the closet in several places. There was no dirty laundry bag. I was doing his laundry daily so I set about trying to find one of the bags. I can’t even tell you the frustration with the amount of time I spent literally walking around the entire building trying to find someone who knew where the bags were kept. And because no one is in the mind set of trying to find things out for you, I went from place to place. After I finally got the answer, I actually returned to every one of the staff I had asked and told them where the bags were kept so the next person that needed one wouldn’t go through that.

One day Dad had an appointment off site. I was told transportation could be provided. I set it up, and thankfully, I got an erroneous bill before the appointment for another transportation cost. When I called to find out about it, they agreed it was in error, but informed me that the upcoming ride would be $110!! I canceled the ride and took him myself. The person who set it up didn’t seem concerned that I didn’t know. I would think that when you are providing services that are extra expenses, it should be protocol that the patient is fully informed before signing up.

Dad was discharged on a Saturday morning. I knew how things had gone, so I started preparing for this on Thursday. For two days I talked with several staff members to make sure that everything was in place. As a single mom and Dad’s primary caretaker, I had limited time and I needed to get him at 9 am. I checked and double checked with charge nurses and social workers. I was reassured repeatedly there would be no “hiccups” with discharge. The paperwork was ready, notes were left for staff, and everyone was informed. I stressed over and over how important it was for discharge to go smoothly.

I arrived on Saturday to find that absolutely everyone had paid me lip service. No paperwork was printed. No notes were left. The weekend staff had no idea he was being discharged and nothing was ready. I was in tears. The level of stress that caused me was totally unnecessary. It was sad that I felt I had to check and triple check everything days in advance because of the lack of follow through, but to find that I wasted my precious time anyways was infuriating.

I would be happy to discuss any of this further. My heart is not in the place of complaining for the sake of complaining, but for the hope that things can be improved. Your staff could do a much better job and have more satisfaction personally and professionally by taking better care of the patients in their care.
Thank you for your time.”

Darcy Thiel

Author: Help for Healing

My name is Darcy Thiel. What people say they appreciate most about me is my genuine nature. I utilize my professional and personal experiences to increase my understanding and compassion to help others. My career has many faces, so let me tell you about a few. I am a Licensed Mental Health Counselor in NY State and am a couple and family therapist. As an Adult Planning Specialist and End of Life Doula, I take my experiences with my parents’ and husband's illnesses and passing to help others navigate the crazy, complicated medical world we live in. This dovetails with the books I have written. Bitter and Sweet: A Family’s Journey with Cancer, the prequel to Life After Death, on This Side of Heaven is an honest and raw perspective on coping with the diagnosis and subsequent loss of Tim, my spouse. I have done extensive speaking on the above topics through live audiences, radio shows, and an occasional TV spot. For more information, see my websites at www.marriageandfamilycounseling.net, www.babycooppublishing.com, or www.darcythiel.com. Copyright Help for Healing by Darcy Thiel © 2012-2019. All rights reserved.

2 thoughts on “Memo to the President

  1. Well written as always. I hope it is followed up by someone.

  2. Great letter Darcy. Let’s hope someone – anyone reads it. Obviously they need help in communication & basic human decency too.

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