Amazing and Disheartening: How We Continue to Fail Family Caregivers

By Shawn Kennedy, AJN interim editor-in-chief

Recently, as part of an ongoing collaborative initiative on supporting family caregivers with AARP (see the comprehensive, and free, AJN supplement called State of the Science: Professional Partners Supporting Family Caregivers), I listened to a group of family caregivers talk about what it’s like to care for sick parents and relatives at home. 

Most of the caregivers were in their 60s and retired, and now found themselves doing the back-breaking work of being on call 24/7, attending to everything from bathing and feeding to chauffeuring to health care appointments, paying the bills, and running the household—sometimes two households, if they lived apart from the person for whom they provided care.

It was amazing and disheartening to listen to them—amazing in terms of the lengths they went to make sure they were doing the right things, and disheartening because they were mostly on their own, with little support from the health care system. And this was right from the start; all said that information to prepare for the transition from hospital to home had been lacking. For the most part, families looked to the family physician to answer questions about what they would need to do at home—nurses were hardly mentioned.

What They Said

  • All said they could have used better preparation before discharge; all agreed that there was little time to ask questions and that health care was “less about quality, and more about the numbers—they rush you in and out.”
  • Being able to practice care procedures like changing a dressing or giving an injection was a big wish: “I would have liked to watch them do it, and then have had them watch me do it to make sure I was doing it right.”
  • They would have liked information on nutrition and alternatives to medication—many were concerned that their loved ones were on too many medications.
  • They all complained about battles with insurance companies to get the care that was prescribed but sometimes denied.
  • Caregivers also said that, with so many different people coming and going, they couldn’t differentiate among health care providers. One said, “It could have been the janitor with a clipboard discharging my mother, for all I knew.”
  • Many said that they researched everything on their own, using textbooks and the Internet to find out what they needed to know.
  • Another frequent subject was the stress and burden of assuming care responsibilities, and the need to “get away for a break.”

I left there feeling depressed—at how badly our health care system fails the majority of people it’s supposed to help . . . and at how invisible nurses were to these caregivers while their loved ones were in the hospital.

What they said they needed most to ready them for caregiving was what nurses used to do to prepare patients for discharge: teaching patients and family members about dressing changes, medications and diet, etc.; helping them arrange for follow-up like home health care; and making sure they had prescriptions and knew when to make a follow-up appointment (or, sometimes, just making the appointment and sending caregivers home with a day or two of medications).

How did we lose these things? How did it come to be that these discharge preparation activities became dispensable? What next might we give away because there’s no time? Is there a “line in the sand” that we won’t cross?

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2016-11-21T13:14:40+00:00 December 15th, 2010|nursing perspective|11 Comments

About the Author:

Senior editor/social media strategy, American Journal of Nursing, and editor of AJN Off the Charts.

11 Comments

  1. Gloria Vargas December 28, 2010 at 11:52 pm

    I know from over 30 years of hospital work, in different areas/specialities, how LITTLE time there is for any “extras” not already demanded by the doctors, hospital administration, OSHA, and the like. Also, unless one is an ARNP, I cannot imagine the majority of doctors permitting RN’s to decide these things, even just to the point of discussing them, in many cases. The idea that the MD “owns” the patient is still alive and well, from my experience. If the unit sets up a program, ok’d by hospital administration, and ok’d by either the majority of the doctors or certain ones that would allow RN’s to pass out brochures with this i

  2. Shawn December 27, 2010 at 8:32 pm

    I can’t help wondering, where is the CNO drawing the line of what professional nursing practice is in his/her institution? If there were insufficient RNs to give meds there would be an outcry;same if there were insufficient RNs to feed newborns. So does this mean CNOs don’t value patient teaching enough to make it a line in the sand?

  3. Vernon Dutton December 25, 2010 at 10:52 am

    The comments Shawn Kennedy heard from the caregivers come at no surprise to me. I have personally witnessed the “deskilling of nurses over the past few decades” and know how little nurses are doing to prepare (teaching) patients for discharge.

    “How did we lose these things?” As you pointed out, nurses are “task-driven and routinized” due to the ridiculous patient loads. The most important skill a hospital nurse needs now is time management. For the majority of nurses, the never ending tasks, endless charting, endless non-nursing duties and medications for so many patients requires management of every min. just to do what is absolutely required. – New graduates come to work with a good idea of what a nurse is supposed to do and the hospitals reeducate them as to what nurses do. A hospitals expectation of a nurse is to take as many patients as you can with little or no support and manage the best you can to do the impossible – and nurses have no time for ANYTHING out of the ordinary (required duties) including the luxury of time for teaching or the endless other contributions nurses have been taught to make. Hospitals have redefined nursing and it involves very little nursing.

    Unfortunately teaching and discharge planing is one of many things nurses no longer do and new nurses quickly learn – you just don’t have time to do – which brings up another issue nurse utilization by hospitals has caused, Nurse Integrity. I would be willing to bet that teaching and discharge planing was checked off on most of the patient’s charts of the caregivers Shawn talked to.

    It is apparent that all the high ideals, expectations and the future of (hospital) nursing (which are welcomed) are being recommended and proposed by people who have no idea of what hospital nurses really do! – It will not happen. Nurses did not give up anything, we have been “deskilled” and dumbed down by our utilization.

    “Or maybe we should just give up the pretence that nursing is a profession altogether?” Can what hospital nurses do be called a profession by any stretch of the imagination? I sadly feel like I have watched the “Nursing Profession) slip away, replaced by hospital workers.

    Vernon.

  4. Carol Gino December 23, 2010 at 1:04 pm

    Unfortunately this is like keeping a woman barefoot and pregnant to keep her powerless. Maybe the advancement of the “profession” of nursing by moving toward more degrees and away from valuing caretaking and nurturing, the new frontiers of healing, has cost us our effectiveness in every area. What little kid grows up wanting to be a shill for insurance companies or the business of health care? None that I know. Most want to help people. But as soon as we get more money or benefits, the business replaces us with unskilled workers and puts the degree nurses at the desk to manage care, not to give it. Why would we tolerate that? Because we can’t unify. Soldiers have each others backs, we don’t. We should stand together, those nurses at the bedside who should be paid more for the art of nursing, as well as those at the desk and those who make policy. Who is covering our back. By keeping bedside nurses underpaid we lose their experience, we split them against the desk nurses. And the policy makers while doing the job of fighting for nursing as a profession, make policy that looks good on paper and doesn’t work at the bedside. Now that doctors will no longer tolerate treatment they are getting from insurance companies, they are leaving. And we will replace them with Nurse Practitioners and be thrilled to take on what doctors leave behind. We’re not valuing “humanity” in nursing, we’re just getting as competitive as stock brokers. And we all know where that will lead. Unless we begin to refuse to do the work of medical/legal secretaries and insist on the value of what we do, we won’t excel at anything and the nursing shortage will continue. Patients and nurses will be ripped off. Nursing will no longer be a healing art.

  5. M.L., R.N. December 18, 2010 at 3:16 pm

    I know from over 30 years of hospital work, in different areas/specialities, how LITTLE time there is for any “extras” not already demanded by the doctors, hospital administration, OSHA, and the like.

    Also, unless one is an ARNP, I cannot imagine the majority of doctors permitting RN’s to decide these things, even just to the point of discussing them, in many cases. The idea that the MD “owns” the patient is still alive and well, from my experience.

    If the unit sets up a program, ok’d by hospital administration, and ok’d by either the majority of the doctors or certain ones that would allow RN’s to pass out brochures with this information, that is probably realistically the only way it could be done.

    In two different hospitals, one a for-profit, one a non-profit, hard work and much discussion went into starting programs for parents suffering the loss of the newborn/ late pregnancy….Certain RN’s, myself included, volunteered and were trained, and while some RN’s really were shocked and thought it cruel, the families, if they agreed to participate (and no one was pushed or talked into it!) all seemed to receive benefit from holding, rocking, spending time with the neonate. They were given photographs, locks of hair if possible, and the usual hospital “footprint” page. This is, of course, a different situation than that of disabled people being cared for at home, but the experience taught me a lot, as older MD’s, who were very against it at first, as well as most of the older RN staff, came around slowly and became very enthusiastic. This was in the early-mid eighties, and the concept, here where I live anyway, was still quite new then.

    I think any new program to educate patients or their families could follow such a model, and eventually get more of the RN staff as well as doctors behind i

  6. M.L., R.N. December 18, 2010 at 3:09 pm

    I know from over 30 years of hospital work, in different areas/specialities, how LITTLE time there is for any “extras” not already demanded by the doctors, hospital administration, OSHA, and the like.

    Also, unless one is an ARNP, I cannot imagine the majority of doctors permitting RN’s to decide these things, even just to the point of discussing them, in many cases. The idea that the MD “owns” the patient is still alive and well, from my experience.

    If the unit sets up a program, ok’d by hospital administration, and ok’d by either the majority of the doctors or certain ones that would allow RN’s to pass out brochures with this information, that is probably realistically the only way it could be done.

    In two h

  7. M.L., R.N. December 18, 2010 at 3:08 pm

    I know from over 30 years of hospital work, in different areas/specialities, how LITTLE time there is for any “extras” not already demanded by the doctors, hospital administration, OSHA, and the like.

    Also, unless one is an ARNP, I cannot imagine the majority of doctors permitting RN’s to decide these things, even just to the point of discussing them, in many cases. The idea that the MD “owns” the patient is still alive and well, from my experience.

    If the unit sets up a program, ok’d by hospital administration, and ok’d by either the majority of the doctors or certain ones that would allow RN’s to pass out brochures with this i

  8. ninjanurse December 17, 2010 at 8:51 pm

    I supervise nurses aides who do home care, and I also do visiting nursing.
    Having someone come in to help a spouse bathe, and dress, and allow the caretaker to get out of the house for a couple of hours is a lifesaver. In my state it’s covered by Medicaide.
    A social work referral at discharge can help the patient get advice on what is available and affordable.

  9. Shawn December 16, 2010 at 12:09 pm

    Good comment. Do you feel it’s a staffing issue or a priority issue?

  10. Barbara H. Portland OR December 15, 2010 at 11:29 pm

    Number one, families need to ask and speak up, and number two, nurses need to step up to the plate. I know, I know just how busy a floor is and when you have more than half of your patients on the unit discharging and those being admitted to fill the empty beds. Ok, That’s reality. But we nurses should work together to make it happen despite how busy it is. And who better to develop and implement a collaborative plan that could fit the unit than the nurses?

  11. JParadisiRN December 15, 2010 at 12:06 pm

    Excellent post.

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