Tales of the inspired and the inspiring: Notes from a CSSR-TCC intern

In his next posts Raphy Rosen relays stories of TCC’s one-woman cheering squad, and makes a case for the importance of input from nursing assistants in the doctor’s decisions on treatment.

To learn more about the CSSR-TCC internship click here.

7- Inspiring patients

Those of you who have been following these posts might recall a story I related earlier about a stroke patient, we’ll call her Greta, who was denied further therapy since she was not progressing after 3 months of treatment. I have seen her a few times since then and she has surprised me every time. Her method of coping with her debilitated condition has been to become the resident cheerleader on her floor. Greta would compliment the CNAs loudly to me while they were nearby and whisper to me that they receive so little recognition for their work and she was going to give it to them in any way she can. In addition, she formed a bond with Raul, a highly debilitated patient with severe dementia. Raul rocks violently back in forth in his chair and was given an extremely sturdy padded chair so he neither breaks the chair nor hurts himself with his rocking. Raul is unresponsive to speech. “Watch this!” Greta excitedly told me, and she gave Raul a “thumbs up” sign. He looked vaguely at her and continued his rocking. She muttered to herself “Oh c’mon baby, don’t fail mama now!” and gave him a thumbs up again. This time he smiled contentedly and, much to her delight, gave her a thumbs up, something I have never seen him do before or since. It seems that Greta has decided that if she cannot help herself through therapy then she is going to help everyone else instead, staff and resident alike. Rather than depression, despondency and resignation, Greta translated her frustrations into actions.

Postscript: Greta has since transferred out of TCC in the hopes that she can find a different facility that will allow her to work on therapy. I sincerely hope to run into her walking on the street in the future and telling her how impressed and inspired I am with her resilience for herself and her commitment to others.

8- The importance of the CNAs

In order to describe the actual research project that we are working on, I need to give a little bit of background on the division of labor at TCC. On each floor, there are 2-3 nurses (R.N. or L.P.N.) who deal with the residents’ medications. A dietician regulates and monitors the residents’ eating habits and the recreational therapist keeps the residents busy and active with activities ranging from sing-alongs to bingo to trivia. However, the CNAs are the most abundant position and they also know the residents probably better than anyone else. On each floor there are 5-6 CNAs (Certified Nursing Assistants), who deal with the residents’ most basic needs such as feeding, bathing and toilet/diaper changing. The CNAs are often the lowest paid worker in the facility and experience the highest turnover rates. Many CNAs are recent immigrants who have had less educational opportunities than other workers. While some CNAs intend to spend the duration of their working life as a CNA, others view it as a temporary stepping stone to eventually train for a nursing degree.

The task to which the medical director steered us was to try to understand the mindset of a CNA who is dealing with patients that span the entire spectrum of cognitive and physical functioning. What interests us most greatly is how a CNA can manage to give friendly, cheerful, emotionally invested care to ~10 patients, especially when their work is so inglorious. In order to probe this question, we designed a two-part survey. The first section asks general questions about being a CNA like why did they choose this line of work and what things do they wish they could change about their jobs. In the second part of the survey we focused in on palliative care particularly to try to get a feel for a CNA’s role in the last months of a person’s life. We asked questions about how they feel about Advanced Directives, hospice care, difficult families and investing emotionally in patients who are unlikely to be alive in 3 months.

One suggestion that we made to the facility is to require that CNAs come to the weekly Committee Care Plan meeting (CCP), in which an interdisciplinary team composed of a nurse, social worker, dietician, therapist, and others discuss a few patient cases and modify care decisions. While officially one CNA is supposed to attend, in practice it is very rare to have a CNA present. I do understand why CNAs would not want to attend CCP. They have extremely physically demanding work and are relatively understaffed. If even one CNA is elsewhere for an hour, that increases the burden on everyone else. That being said, I think that the problems created by not having a CNA present are far more serious. The problems are two-fold, both for the residents and for the staff.

First, the message TCC sends by including the voice of every other member of the floor except the CNA is that they do not care what the most front-line caregivers have to say about their patients. CNA surveys reported a widespread complaint of CNAs is that they are not included in the decisions about their patients, about whom they care deeply.[1] I heard about a particularly striking illustration of this that occurred about a year ago:

There was an elderly live-in dialysis patient named Evelyn Gerber, whom the entire staff adored like their own mother. Evelyn had been at TCC for 5 years and was something of a superstar celebrity among her caregivers. After some time, Evelyn’s condition began deteriorating rapidly. In a decision between the chaplain, the social worker and the family (including her Health Care Proxy), they decided to discontinue her dialysis, which meant she would die in days and not weeks. Many members of the staff were mutinous, especially the nurses and CNAs. They were disheartened that, after their meticulous and devoted care for her, her family would just “give up” and stop Evelyn’s dialysis. Obviously, this type of decision resides primarily in the hands of the patient and secondarily with the family, and that it is the staff’s responsibility to provide the best care regardless of the patient’s decisions. That being said, it would have been appropriate to at the very least explain to them the rationale behind the plan (increased comfort, patient autonomy, dignified death, etc) rather than just announcing that “Ms. Gerber will not be going for dialysis anymore” to shocked staff.

In addition to potentially offending CNAs by not including them in Care Plan meetings, one can also miss out on invaluable insights that would tangibly benefit the patient. CNAs often have greater perspective into a patient’s ever-evolving condition because they spend more time than anyone else with the patient.

Consider the following example: I have attended a few HD Care Plan meetings and, unlike most other floors, they often have a CNA present. At one particular meeting, the discussion turned to Mr. Edward Wheeler, a mid-40s patient who has the curious practice of only emerging from his room for meals and then returning to his room, putting a towel over his head and lying awake and motionless on his bed. At first glance, Edward’s lethargic routine sounds like he is suffering from depression. A few of the staff members suggested ordering a Psychology consult to determine if he would need to be on anti-depression medication. The CNA strongly disagreed and said that if you just go in to his room and talk to him, you would realize that Mr. Wheeler is in excellent spirits. In addition, his family had told the CNA that this was just one of Edward’s idiosyncrasies, and had been like that for a number of years. If this CNA had not been present, a psych consult would certainly have been ordered and Edward might have even been started on unnecessary medication. If TCC begins to include CNAs more regularly in care decisions, I think the level of care will increase dramatically.