Before I go over darker issues that loved ones should be aware of concerning nursing facilities (personal care, assisted living, memory care, skilled nursing, and rehab), I want to review an important positive note we should never forget. Every facility will have a core group of staff that is the heart and soul of the facility. These team members show up for other shifts, not just their own, and pour out their hearts and souls for the residents they serve. Thanks to these people, I can do my job as a hospice nurse when I have patients at a facility; without them, the story would be darker and drearier.
What Families Should Know
There are critical differences in how a hospice operates in a private home (i.e., that of the patient, family member, or friends) vs. in a facility that can drastically impact the quality of the patient's hospice care. In a home setting, when your loved one is uncomfortable, whether due to an infection, a fall with injury, or the disease process, here is what happens:
The patient or family member calls hospice
A nurse is sent out if needed.
The nurse discusses one of several options for managing the situation.
The patient (if able) or a family member decides which solution.
The nurse calls the hospice medical director for order approval and typically gets the approval while in the home setting.
If the solution involves a new medication, the nurse calls the pharmacy with the doctor's order, and typically, the same day or early the next day, the medication is delivered.
The patient starts the solution option decided.
The nurse checks in on the patient.
The situation is often resolved twelve to twenty-four hours after the issue is brought to the attention of the hospice provider for a home patient.
Yet, in a facility, the patient, family, and hospice team are subject to the policies, procedures, and whims of the facility and provider! Often, hospice is not notified of a change of condition of the patient until a family member visits — how many days went by with the patient unnecessarily suffering??? But let's state there's a good core group as mentioned above, and hospice is notified as quickly as hospice would be notified for a home patient. Here's the change from above.
Hospice is notified either by the facility staff or a visiting loved one.
A nurse is sent out.
The nurse calls the family to discuss one of several options for managing the situation.
The patient (if able) or a family member decides which solution.
(HUGE DIFFERENCE here forward) The nurse writes a recommendation for the facility provider, who may only come to the facility once a week or at odd times.
The facility doctor can consider the recommendation for weeks on end, deny it, or dramatically modify it without communicating with the hospice team.
Only if AND when the facility doctor approves the recommendation does the facility doctor (on their measures of time) contact the facility pharmacy to order new or changed medications.
And when those are finally delivered, the facility staff can act on the solution.
Let me put this into perspective for three more common cases than you realize.
Case 1 involved a patient with a stage four pressure injury to the bone where the old dressing and packing had to be removed to clean out the area, pack in new dressing, and close the wound. The dressing changes were done several times per week, and every time the staff went to change the dressing, the patient would SCREAM OUT BLOODY MURDER until hours after the change due to the amount of PAIN the dressing change involved.
The writer, with permission from the family, recommended 20 mg of liquid morphine (maximum daily toxic, not lethal, but the toxic dose is 1,600 mg) 30 minutes before dressing changes. Visit after visit, the doctor was sitting on the orders, doing nothing! Repeated requests by the writer and other nurses resulted in nothing. The writer went to the assistant director of nursing, who involved an on-call doctor who only approved 10 mg of liquid morphine and restricted its use. The family was livid, as was the hospice team, whose hands were tied because the facility provider was in charge, followed by facility protocols.
Case 2 involved the lady patient who gave the writer his first nickname, Jack. The patient showed multiple signs of a UTI. The power of attorney gave the writer the okay to recommend Bactrim double strength twice daily for seven days. The provider chastised the writer, said that the writer should care about the patient's kidney functions, and changed the order to Bactrim single strength for three days. The patient started to improve, showing Bactrim was the right antibiotic, but then started to decline, showing symptoms that the UTI was still present. The provider refused to issue a new antibiotic. In the delirium the patient was experiencing due to a UTI, they fell and severed off a hip (only kept intact due to skin), went into shock, and died!
Case 3 involves a patient at the “county home,” a skilled nursing facility where the facility medication record shows the patient receives 100 mg Sertraline and 50 mg Zoloft! Nurses familiar with medications will catch this, but Sertraline IS Zoloft; the patient was getting 150 mg of Zoloft daily. The writer was concerned about recent behaviors suggesting the patient may be experiencing Serotonin Syndrome. With permission from the family, I wrote a recommendation to properly taper off the Sertraline (Zoloft) to zero and to have available PRN (as needed) liquid lorazepam and liquid haloperidol as the patient was having increased confusion, anxiety, agitation, and hallucinations. The provider refused all recommendations, stating the facility nurse's documentation contained no entries backing up the writer's observations. The facility charge team apologized and agreed they don't always remember to document events such that there's no proof from the provider's perspective.
Case 4 involved a patient who went to a facility for respite care. The patient was a few months out from dying, was able to walk with a walker, and went into the facility alive and well. The “tuck-in report” showed the facility gave the patient a dose of haloperidol (which was not on the patient's medication list — but this is not uncommon or by itself wrong) for agitation. When the writer went in the next day to see how the patient was doing, the writer asked for an up-to-date medication list, found the patient minimally responsive, and then became unresponsive as the facility CNA tried to feed the patient. The writer inquired if the patient received any more haloperidol or lorazepam; the unit manager responded the patient was being given 10 mg morphine every two hours and 1 mg lorazepam every four hours routinely, EVEN THOUGH the medications were ordered PRN (as needed). They reported they were verbally told (verbal does not equal a written doctor's order) that the medications were routine; later on, my manager at the time found out a CRNP wrote an order for the morphine to be given every two hours routinely for seven (7) days; respite is only five days (cover up!!!). The patient did come out of the facility dying and passed away a brief time afterward. The writer is not allowed back into that facility because the writer caught an error and called out the facility on the problem.
In all four cases the patient suffered, and in two case (cases #2 and #4) died early.
I mentioned the provider's pecking order, followed by the facility protocols. Some facilities have protocols in place to stop medications after fourteen days unless renewed, and often (even with a solid core group mentioned above) will not inform the family or hospice that access to those medications was removed, leading to increased suffering of the patient should the patient need those medications immediately.
All of the above is in addition to the short staffing that most nursing facilities are experiencing and have been experiencing. While these cases do not happen daily or weekly, they happen far more often than families know.
What New Hospice Nurses Should Know
My first several years working as a hospice registered nurse were spent caring for patients who lived at home. So, what I'm about to share is new to me in the past two years, and when it happened to me the first time, I was in shock for a while. That was learning that the food chain often matters more than patient-centered care, consistent patient-centered care, right vs. wrong, or just pure good principles. By food chain, I mean a source of referrals for new patients.
Suppose someone at the facility for which you will see patients, provide recommendations, or keep the family up to date on the status of their loved one finds something wrong with or about you. In that case, they can go to the facility social worker or administrator and ask that person to call the hospice provider, letting the provider know they are no longer allowed back in the building. The story they tell your management team about why they no longer want you in the building can be anything from their claim you acted like a Smart Aleck about anything to outright lies. What makes the matter more frustrating is that most management teams will not only avoid defending you to the facility making such allegations and submit to the facility request, but depending on the allegation of the facility, you may have to defend yourself to the local management team.
To give you an idea of the level of pettiness that can entail being told not to come back to a facility:
The writer was called a Smart Alec for mentioning the Cochrane Mask Study about the ineffectiveness of surgical masks for the Omicron (common cold symptoms) variant while obeying all facility infection control protocols, including wearing a surgical mask.
A coworker had a fabricated story about a nurse who had her removed from the facility. The same facility is now on their fourth hospice nurse from our agency.
The writer was asked never to return to two separate facilities due to advocating too strongly for a patient. In one case, the facility was, in effect, holding the patient hostage against the will of the patient and family. The patient wanted to go home to die. Still, the facility doctor refused to expedite the request and waited until the provider was back on site within the facility a week later to sign the paperwork. The writer provided the steps necessary for the family to obtain the quick discharge and release of their loved one, which did happen. Still, the writer was asked by the facility's director of nursing never to return.
A few years ago, the writer was not allowed on one of the floors at a local facility for having the audacity to allow a hospice patient who was refusing to drink pudding-thick liquids to have a regular cola that was drunk in the presence of the writer where the patient didn't choke, cough, or have difficulty.
The level of pettiness is so high, and the reality that a hospice staff member can be asked never to come back or otherwise told to leave the facility creates two challenges. Sometimes, the person being asked never to come back is the best person to represent the patient on the hospice side; now, they may have a replacement staff member who must re-learn the entire case from the start or who may not have the experience and skills of the original staff person. Secondly, it forces hospice staff to walk on eggshells at times because if we advocate too strongly for our patients, we can be kicked out of the facility, and in the end, the patients and families suffer.
How Can Families Make a Difference?
If you appreciate your hospice team and agree to recommendations, act alongside hospice by communicating with the facility's administrator, director of nursing, and social worker to expedite the signing of any outstanding doctor orders. At least monthly, let the same parties know you strongly support the hospice team and want to ensure the team remains intact.
Nurses, How Can You Make a Difference?
We are in a tougher situation because if we push too hard on our agencies to stand up for us and our rights, we do (sadly) risk losing our jobs. However, we need to start communicating with our team members about what's happening vs. allowing a cover-up of just shifting nurses around.
Conclusion
The article sheds light on the challenges hospice patients face in facilities and the differences in care between home and facility settings. It emphasizes the critical role of dedicated facility staff and the impact of facility policies on hospice care. The author's experiences illustrate patients, families, and hospice teams' struggles in navigating facility protocols and obtaining timely and appropriate care. The article also highlights the vulnerability of hospice nurses to facility dynamics, where advocacy for patients can lead to professional repercussions. It calls for families to support the hospice team and for nurses to communicate truthfully about the realities of care. The conclusion encourages families to advocate for timely care and for nurses to navigate the delicate balance between advocacy and professional challenges. The article aims to raise awareness and foster collaboration to improve the quality of hospice care in facility settings.
