Over the past two weeks the Los Angeles Times ran a slurry of reports lamenting the high cost of medical care. Americans spend more money on medical care than any other Western country and no one sees relief in the near future. We have been debating the issue for decades. It is sobering to realize that President Clinton’s attempt to address cost and access to health care was initiated over 20 years ago.
I am well aware of the escalating costs of health care. Many factors are to blame, but one statistic stands out in my mind. Of the nearly 1 million Medicare beneficiaries discharged from hospitals in October 2008, about 1 in 7 experienced an adverse event. These statistics don’t include events in sub-acute care facilities including nursing homes and home health care. Today I witness exactly how this happens.
MOM: HOW ONE PATIENT’S MEDICAL CARE COSTS ESCALATE
My mom has been in somewhat stable health since her diagnosis with breast cancer over 10 years ago. The cancer had metastasized and a tumor impinged on her thoracic spine. Radiation shrank the tumor, but she was discharged to a rehab facility as a paraplegic.
Rehab was just short of miraculous. She haltingly danced at her grandson’s wedding the next year, and had been able to live independently until about six months ago. A series of “falls”–mostly sinking onto the floor as her legs gave out–prompted an admission to her local hospital. What was causing her progressive weakness and what could be done?
HOW DECISIONS GET MADE
Within a couple of days the neurosurgeon scheduled surgery on her cervical spine. Three areas showed severe stenosis. The doctor did not attempt to address the most severe, and recommended surgery on the least of the three. I heard the news on the telephone. When I questioned the decision I was told, “Mom has made her decision.”
At the time I backed off. Mom is fully capable of making a decision on her own. I also know that she is of a generation who tends to agree to whatever an authority suggests. I did not like that she made the decision without anyone else in the room to hear out the physician’s proposal. It is always a good idea to have a second set of ears. Later I would be reminded again why this is so critical.
Mom stayed in the hospital for several weeks, transferring to the acute rehab floors once she stabilized after surgery. A bit less than a month later she was home.
Mom was adamant about returning home, but she needed home health services. Hired aides covered the 7am-4pm shift during the day. My sisters and I covered the nights. Thankfully there are six of us and we all stepped up to the task.
We put together a calendar to keep track of who was with mom. At first we stayed the night, but mom healed and eventually could navigate her walker to the bedside commode independently through the night. Soon we scheduled ourselves for the afternoon and evening hours, visiting with her, preparing her dinner and helping her get to bed. Once mom was settled in, the attending sister would drive home to tend to her own family and work the next day.
In the meantime mom was receiving physical therapy and occupational therapy. She worked hard, but felt frustrated. She felt like she couldn’t do everything that was asked, and despite all the care and encouragement she wasn’t improving. In fact, things got a lot worse.
MISTAKES, MISCUES, AND MISCOMMUNICATION
I left for a family vacation to Alaska and during the last week I was away, mom’s condition deteriorated rapidly. In addition, she was found to have three bed sores, one estimated at stage 3/4. How did this happen so fast? I helped mom a bit more than two weeks earlier and saw no signs of redness or any other tissue damage at that time.
Evidently, the home health aids didn’t check, neither did the visiting nurse. Neither of the physical therapists questioned her status, despite ongoing conversations that she was sitting for extensive periods of time.
Mom is an intensely private person. It pains her to have others help with her most intimate hygiene. I am still wondering how health aides missed any evidence, the nurse didn’t even look until the damage was already done, and that no one thought to advise the family of this risk and make sure she was being checked. Back to the hospital.
In the hospital, the doctors scheduled test after test. We spoke to her internist, the neurologist, and then the neurosurgeon. While the bed sores got needed attention, the neurologist weighed in on mom’s lack of progress and suggested we get a second opinion. The neurosurgeon weighed in and talked about a second surgery.
This time I pressed him to give us a prognosis. He demurred. The doctor spoke of mom’s improvement after the first surgery. I disagreed. She mostly recovered from the surgery, but I didn’t observe any material improvement compared to before the surgery. After a bit more concerted questioning, he finally looked at me and said, “What do you expect? I am a surgeon.” I remember wondering if my mom was coerced into the first surgery. I see how easily it can happen.
When the neurosurgeon came in to visit my mom, he told stories and made my mom laugh. He talked about what he could do. I could tell she was charmed, but there was no discussion about relative risks nor the likelihood of mom’s improvement until I pressed. When he capitulated and mom realized that the second surgery would be another “exploratory” endeavor, she said no.
TRANSFERRING TO SUB-ACUTE CARE: MORE OF THE SAME
With no surgery on schedule, mom was discharged to a rehabilitation facility in the morning. A gastrointestinal doctor also needed to sign her discharge. He came late that evening. Mom had been waiting with one of the sisters to leave the entire day. What a waste of a hospital bed, my mom’s energy, and my sister’s time.
At the time the GI doc mentioned a colonoscopy. It is an elective procedure and we all decided it would wait until mom was healed and settled into her new home, an assisted living apartment.
In the meantime, mom settled into the rehab facility. Later that week I visited and her dinner was served. I saw the white bun, French fries, cut up strawberries, vegetable soup, and a glass of apple juice that she promptly downed. A small chicken patty was also on the tray. I mentally calculated too many carbohydrates, especially for someone who has a history of elevated blood sugars. I made a mental note to get the blood work I had requested weeks ago–and never received.
ELEVATED BLOOD SUGAR IS A COMMON CAUSE OF POOR WOUND HEALING
When the wound care specialist assessed mom, her expected 1-2 week stay morphed into an estimate of an additional 5-6 weeks. She wasn’t healing very fast. After a very pointed call to her physician’s office, I picked up her blood tests. Sure enough blood sugars were elevated in the hospital, and just under “pre-diabetes” levels in the rehab facility. Elevated blood sugar is a common cause of poor wound healing.
I called the dietary supervisor and I brought copies of the blood tests to the nursing supervisor–she didn’t have them either. Soon mom was put on an elemental protein supplement three times a day that made her gag (it is often used in GI tubes so typically the patients don’t taste it).
One sister talked to dietary and asked for a larger protein serving and more vegetables. When I looked at the medical record, it just said “large portions.”
To get her diet order formally changed I contacted mom’s physician at the facility, and then the consulting dietitian. I caught her during her first day on the job. A flurry of phone calls later and mom was finally given double protein, minimal refined starch, no juice. More fresh fruit and vegetable. I don’t know if it helped that I know the consulting RD, but I must say the dietary department definitely stepped up to the plate.
With a little tweaking to the diet, mom is now enjoying the kind of food that she is used to eating. I brought in some higher protein snacks, and she no longer has to gag down the protein supplement.
Mom is healing faster. She will likely be released in just over two weeks instead of the original estimate of 5-6. I can only wonder what would have happened had her diet been addressed more aggressively from the beginning.
- Every time I visited mom in the rehab facility she was on her back. It was sweaty and hot. I kept thinking this can’t be good for wound healing. The pillows had plastic protective coverings under the pillow case. In addition, she was supposed to be turned from side to side every two hours. It wasn’t happening.
When brought to their attention, one staff member told a sister, “We don’t have the staff to do that.” I quickly put together a chart for care. Two hour slots were to be signed off for each turn. Once mom understood the implications, she immediately took charge of getting the staff to sign off — and let me know when she needed another sheet. In addition, another sister made a a quick call to the administrator–the same one who knew that the every two hour bed turning was the explicit reason for her admission. He made the necessary staffing adjustments.
- Remember the colonoscopy? It was considered an elective procedure and could wait. What a surprise when less than three weeks later she was being prepped for the procedure without anyone being notified.
At this time, mom’s bedsores were still at stage 3 and she had developed a severe reaction to plastic near her skin. Over 30 blisters formed where she sweat during physical therapy. When the nurse was brought in to check and realized she had a diaper on, he immediately stated, “I don’t do diapers.” When he saw the raw tissue he claimed, “I thought this had already healed.”
Mom did need to heal, not endure the grueling prep for a colonoscopy. She would be cleaned out and given nothing but clear liquids for the next 24 hours.
When I called the GI doc, I found out that he scheduled the procedure just after mom was transferred. Neither he nor the attending physician at the rehabilitation facility thought enough of my mom’s status when the orders were automatically faxed into the facility a couple of weeks later.
Why did none of the nursing staff think to question doctor’s orders? Why didn’t the GI doc check on mom’s condition before sending the prep orders? Why did the attending physician not think this through?
My mom’s number one goal is to heal and transfer out of the facility. Why is it left up to the family to remind the medical staff of her priorities? Why is the medical staff not paying attention to her nutritional status and the role it plays in healing? Both physicians agreed to delay the procedure, but that wouldn’t have happened without my intervention, someone with medical and nutritional expertise.
- And that annoying, sweaty plastic diaper? My sister wrote just a couple days ago that mom was still wearing it hours after PT. This was not supposed to happen again. But then again, in the hospital mom had a sign stating that she is allergic to plastic tape above her bed. That didn’t stop someone from using the offending material to attach her IV. She flared and it took weeks for that to heal as well.
Over and over again, mom’s care has been compromised with costs escalating as a result. The reasons are many. Lack of attention, poor communication, inadequate follow through and I suspect overwork and burnout for too many of her caregivers. There is just not enough critical thinking going on.
How much money did it cost for mom to be hospitalized for bedsores that should have never happened? For a surgery that may have been unwarranted? For lack of attention to her nutritional status and dietary prescription? For extra weeks of sub acute care? For inattention to each and every condition with the capacity to hinder her recovery?
I wonder how often nutrition status and attention to diet are not given adequate attention in all health care settings. How often are procedures scheduled that are not timed or prioritized appropriately given the patient’s current nutritional status? How often does poor care exacerbate a problem or cause a new one?
It seems neither the medical staff nor anyone else recognizes the incredible costs for not paying enough attention. What will it take for health care practitioners to slow down and deliver thoughtful, conscious care? My mom’s experience could have been very different and far less costly. If we are ever going to flatten the escalation of health care costs, maybe it is important to reward good care instead of just paying for more care to fix the mistakes.