When the System Fails an Elderly Patient

To the Editor:

I wish to share my growing concern about medical care for the medically complex geriatric patient. My dad recently turned 90 years old (on 3/3/08). For most of his life he was healthy and active, looking, feeling, and acting much younger than his age. Twelve and a half years ago he was diagnosed with prostate cancer; that was kept under control with appropriate medical intervention, and Dad was able to go on with his life without much change from the condition. He continued driving and was a good driver up to age 86.

On August 11, 2004, my father sustained a traumatic brain injury due to a fall on a broken sidewalk. (This was not a senior merely losing his balance—the sidewalk deficit was invisible from just above it.) Immediately afterwards, Dad was alert and able to speak, and share with the ambulance attendants all that had occurred. He remained in the hospital for 1 week, during which CT scans showed that the blood clot on the brain had initially decreased in size, then remained stable.

The social worker at the hospital (NY) informed us that Dad would require a period of rehabilitation before returning home. He determined that, due to Dad’s age, he would require subacute, rather than acute, rehab and should be admitted to a skilled nursing facility (SNF) for short-term rehab. He gave us a list of SNFs in the area in which my parents reside. We selected a facility not too far from their home, one that was reported to have a “wonderful” rehab department.

The trouble began almost immediately, but gradually. First, the doctor in charge recommended that we wait until Dad’s release (which we thought would be 3 months) to reinstate his prostate cancer treatment. Then, they continued to administer phenytoin in greater and greater dosages, as Dad’s body was not absorbing it; this was despite the fact that he had never been determined to have sustained a seizure. For 3 1/2 weeks, Dad did well in rehab, then began to deteriorate, becoming more and more lethargic. When my mother and I expressed our concern to the supervising nurse she stated, “He’s just tired, but he fights when we try to dress him.”

We continued to express our fears, and finally another supervisor called the doctor. They sent my father to the ER for a CT scan, which revealed that the blood clot had enlarged and liquefied. He required emergency brain surgery to have the clot drained. HAD MY MOTHER AND I NOT BEEN THERE INSISTING SOMETHING BE DONE, DAD WOULD HAVE DIED THAT NIGHT.

After five days at the hospital, Dad returned to the SNF and went back to rehab, although now he was nonambulatory and unable to do all that he could before. Then he began to become severely lethargic again. He was sent for more brain scans, which revealed no changes.

He went back to the neurosurgeon for a follow-up (3 months post-surgery), and it was thought that the phenytoin might be causing the lethargy. As he had no seizures, the neurosurgeon recommended weaning him off the phenytoin. At the facility, the consulting neurologist stopped it entirely all at once. Thankfully, no seizures.

Shortly after the neurosurgical follow-up, we expressed concern to the nursing home staff at the facility that we couldn't awaken Dad. The day supervisor said that the doctor would see him “when she comes in tomorrow.” They didn’t view it as an emergency. The next afternoon, I received a call at work that they were rushing Dad to the ER “because we cannot wake him up.” It turned out that he had sepsis and a severe urinary tract infection. He ended up with a gastrostomy tube, and they thought he wouldn't survive, but he did and became responsive and interactive again.

We finally realized that the recurrent UTIs were due to the enlarged prostate. They still refused to treat the cancer until I obtained some information from a doctor online, and in June 2006 he was back on medications.

They now say that the cancer has metastasized, but Dad is not experiencing any pain, just the recurrent infections. They also refuse to order rehab, saying he is not responsive “enough,” and there are no goals to work on. The doctors, particularly the specialists consulting at this facility, are horrible. The same neurologist put him on levetiracetam about a year ago (500 mL 2 times/day) because during an ER visit for UTI he shuddered, and they said it was a seizure. The episode lasted maybe two seconds, with a 102-degree F fever. It took a great deal of time to get him off of it. When I called this neurologist, he said he would have to review the dosage; when I told him what it was he said, “That’s a lot. I didn't prescribe that!” He did, and the SNF has the notes to prove it.

The continuity of care in the SNF and the hospital is very poor. Examples: My father’s temperature at the hospital is not taken rectally, so when the doctor sees “no fever,” it may not be accurate. The doctor ordered a sonogram of his right leg last month, but mistakenly wrote “left leg.” My mother and I were there and tried to correct it, but the hospital refused to listen. The specialists at the hospital come and go, and we don’t know what was ordered nor what the results are. The two primary doctors are not always available and don't always know immediately what is going on.

I work for an agency that treats individuals of varying ages with cerebral palsy and cognitive/communicative/swallowing/physical/psycholog-ical deficits. (I’m a speech/language pathologist.) We’re not perfect, but we do go above and beyond to provide treatment (including rehab) and inform the patient and/or significant others of what is happening. We have had doctors at this agency who spend an entire hour getting to know and examine medically complex patients. My father's doctors give a brief listen to his lungs and look at labs, and that’s it! I have received more and better suggestions from specialists that I have communicated with online than from the doctors who have been paid to care for my father.

You may ask why we continue with this SNF after all I have described. We don’t have any other place, and feel that another SNF will be no different. I see that despite all the deterioration Dad has gone through, he is aware and alert and still loves people. He still has some abilities that I believe can be increased/maintained (he didn’t have a contracture of the foot or bedsores until entering the SNF).

So my question to you is: What can be done to change the system for my dad and others since it is not working? Not every elderly, disabled person dies from age and condition; sometimes it is because they don't get the appropriate care. As I said, my father is 90, so we have no time to waste. Please, let me know what can be done.

A Concerned Daughter
(name withheld)
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Response from Richard M. Dupee, MD, Editorial Advisory Board member, Annals of Long-Term Care: Clinical Care and Aging:

The experience that you describe in your dad’s care is troubling. Much of what occurred may be due to the changing landscape of nursing homes and the nursing home industry. Approximately half of all nursing home residents are age 85 years or older, such as your dad. The level of sickness and disability among nursing home residents has increased dramatically over the last several decades, with a vast majority of nursing home residents requiring assistance in three or more activities of daily living.

Indeed, 20 years ago, many of the persons currently residing in nursing homes would have been in acute care hospitals; however, as hospitals strive to reduce length of stay in order to be financially viable, many still moderately ill patients are now being transferred to skilled nursing homes, which are much less costly. The number of nursing home residents with cognitive impairment has increased dramatically as well, and dementia remains the most common condition in nursing homes, with an estimated range between 50% and 70% of all residents.

Numerous attempts have been made to improve the overall quality of care given in nursing homes. An Institute of Medicine report in 1996 recommended minimal nursing/staff ratios in order to enhance the quality of nursing home care. Significant nursing home reforms were enacted in 1987 as part of the Omnibus Budget Reconciliation Act of 1987. The protocols established are now considered practice guidelines that the nursing team and physicians are encouraged to use. Unfortunately, recruiting staff—and retaining them (turnover rates for RNs and LPNs are well over 50% per year)—still remains a difficult problem.

Finally, because the majority of nursing home care is provided by physicians who are not full time in the nursing home, patients are not seen with the same regularity that occurs in the hospital setting. Families are a critical component of the overall care plan for patients, and, clearly, you have been very involved in your dad's care.

To specifically answer some of your concerns, I would need more information. For example, it was not clear what treatment had been given for your dad's prostate cancer. Additionally, it is unclear what the level of phenytoin was when you were concerned that his “body was not absorbing it.” It is unfortunate that he seemed to improve, and then began to deteriorate, becoming more “lethargic.”

Unfortunately, elderly patients can present with serious illness in a very atypical fashion, and, therefore, I think the nursing staff might not have realized how sick your dad really was, thinking that he may have just been “tired.” Unfortunately, it turned out that he had a cerebral insult and was hospitalized. Your dad clearly experienced functional loss after the stroke. Certainly, phenytoin, given for seizure prevention, can make one quite lethargic, and was wisely withdrawn.

As mentioned, seriously acute illness can occur very atypically in elderly persons, and, indeed, that is what happened when your dad was rushed to the emergency room with sepsis. Unfortunately, sometimes these things are just not realized in a busy nursing home setting. As for the neurologist and the dosage of levetiracetam, I would strongly urge that you make an appointment to sit down with the neurologist and try to understand exactly what happened.

Most hospitals, including my own (Tufts Medical Center in Boston) are very careful in terms of testing and surgery, and are required to perform a “time out,” wherein the correct anatomical location is documented before a test is done or a surgical procedure is carried out.

I certainly understand your feeling that this was a systemic failure, and I wish that I had a simple solution to the problem. Several studies have indeed documented misdiagnoses, inappropriate interventions, and poor preventive care practices in nursing homes, but organizations such as the American Medical Director’s Association are working hard to improve some of the care issues as described.

As a geriatrician and a committed member of the American Geriatrics Society, I will make every effort to bring your letter to the attention of my colleagues for further discussion, in an effort to improve the care that is provided in the nursing home setting. If you make a decision to leave this particular skilled nursing facility, it would be important to get names of some of the other local facilities. You can call Eldercare Locator¹ at 800-677-1116 to find your local agency on aging.

It may be useful to check the Consumer Reports Nursing Home Quality Monitor.² It is also important to check on ownership, as it has been shown that independent “nonprofit” facilities may be a better choice than “for-profit” chains. You also could check with your local Long-Term Care Ombudsman.³

Finally, it would be worth meeting with the nursing home administrator to offer your concerns. You should ask about top-level staff turnover.