The following letter was posted on Complex Care, an email site for MD specialists in complex medical care. It was in response to a New York Times article on this topic.
This was indeed a heart-wrenching and accurate article. It is also the very tip of the iceberg.
The nursing shortage will not go away, it has always been a challenge. It is not just the money either. As much as these heroic nurses care about their patient, there is no advancement, poor benefits, limited social engagement and a bit of isolation. In short, it takes a very specific kind of nurse, just as it takes a certain kind of nurse for the OR, ER, ICU and so on.
Here in Texas, if you do not qualify for skilled nursing (a very biased criteria of mechanization) the state’s hourly rate is $11.00/hour for the CLASS program. We were 8 years on the waiting list and we are currently on another list (less hours but $15/hour) where there are over 100,000 clients before us. I am not sure I could hire a babysitter at this rate any more and my son is 30.
Having experienced a catastrophic hypoxic event at birth, now 30 years old, this road is well travelled for us. I am a nurse, so that helps, but his care has prohibited me from working consistently outside of the home. I had 15 years experience in cardiovascular nursing prior to his birth.
I see 2 solutions to this dilemma.
1. The state changes the tier of care and adds perhaps a middle level of care. Codify needs accordingly. A blind, quadriplegic, oral feeding, profoundly delayed, non-verbal, orthopedically and medically fragile patient (my son) needs a skill set quite different than a person with intellectual disabilities or mobility issues but no cognitive issues and so on. One size fits all is just not a strategy. The term custodial care is an insult.
2. The hospital systems could ameliorate some of the isolation and access by creating a respite unit that dove-tailed with home care. An in-house corp of nurses (CNA’s, RTs, PTs?)who could also work in someone’s home. These could be rotating positions. That would answer training, benefits, advancement and a host of other problems. This could be broadened to an out-patient respite facility with the same and more support for families.
The take-away is that no one, except the families, have skin the game in the home setting. Our son is now 30 and if you think getting nurses was hard, just think about caregivers in general. This population is the canary in the coal mine, but there is no institutional will to change the status quo. The loudest voices have the time and energy, and sadly, many of their children have died and so they can. The rest of us are beyond fatigued and are simply feverishly treading water.
I have been on this list serve since its inception. I see this issue come and go. I never see the change we all aspire to.
Diane Stonecipher, RN, BSN.
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