by “E-PATIENT” DAVE DEBRONKART

Continuing THCB’s occasional series on actual experiences with the health care system. This is the first in a short series about a patient and family experience from one of America’s leading ePatients.

I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because the money’s good and enforcement is lax. The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring. I now have permission to share the details of one family’s disastrous encounter with such a company’s “respite care” service.

The National Institute of Health says respite care “provides short term relief for primary caregivers.” It’s not medical care or memory care or assisted living; it’s not paid for by health insurance and it’s not regulated by the Federal government. It just replaces, for a while, the ordinary duties provided by family caregivers, so they can get a break.

The family’s mother was discharged from hospital to home. The primary caregivers were, as usual, the family’s daughters, who had been with their mother throughout the hospitalization. Believing that a good respite care facility was an excellent bridge for continued progress between hospital and returning home, they purchased a two week stay before taking their mother home.

It did not go well: ten days later their mother was dead.

The company’s website and lobby are gorgeous, of course. The reality was not. Media coverage talks about management’s desire to climb the rankings of biggest companies in the industry, as they acquire some facilities and build new ones. I believe the public needs to be alerted to such companies, in which management’s attention and achievements are much more on further growth than on delivering what they’ve already sold.

Here is the letter to the facility, written by the caregiving daughters “Alice” and “Sarah,” with day-by-day details of the constant failures caused by understaffing, disorganization and mismanagement. (All names have been changed, and the letter has been lightly edited for clarity and length.)

Mind you, this isn’t a skilled nursing facility or even assisted living; it’s just respite care. Read this and weep.

It is with heavy hearts and deep sorrow that we inform you of our mother Angela’s death 48 hours after leaving your facility.

As our family actively grieves her death and mourns our tremendous loss, we are reaching out to communicate several serious complaints about the poor service we received while she was in your respite care program from Tuesday, ________, 2022, until a week later, Tuesday, ________, 2022. This was a week short of the two weeks we contracted and paid for in advance. Out of great concern for her safety and well-being while in your facility’s care, we made the difficult decision to move her home and hired another agency to provide appropriate care at home. Our concerns are listed below, in chronological order.

Our purpose at this juncture is two-fold:

• We are firmly seeking a full refund due to breach of contract for services not provided as promised.
• A documented plan of action by you to address our concerns (see multiple suggestions at the end of this letter) so that no other family should ever endure the unnecessary stress and duress we did while our mother was placed in your trusted respite care program.

According to the NIH National Institute on Aging, Respite Care “provides short term relief for primary caregivers.” Sadly, our experience of respite care at your facility was the polar opposite.

Your website clearly states what we should have reasonably expected: “expert therapists” and “all the comforts of home.” But recent online reviews of your facility show more complaints like ours. After our alarming experience, it is clear that action needs to be taken beyond the polite and empty corporate responses to those online comments from your Regional Director of Operations.

Summary of Events:

Before coming to you, Angela was hospitalized for 13 days. Physical Therapy (PT) and Occupational Therapy (OT) evaluations at the hospital recommended discharge from hospital “to home with assistance.” She was not judged to even need rehab; she was ready to return home with assistance.

Based on these recommendations, as a family, we conducted an assessment of all options for consideration, researching several local options. After researching your website and touring your facility we were confident that your respite care would be a good interim program for her to receive the care she needed, such as PT 3x/week (as advertised) to regain strength and function, building on the progress she made while hospitalized, and provide relief for us, her primary caregivers at home and during the hospitalization. 

The day before discharge from hospital, your RN Executive Director came to do a routine assessment. She rated Angela a Level II client. As a Level II client, she needed accessibility assistance because in the event of an emergency, such as a fire or alarm (during which the elevator is not accessible), she would be trapped with no ability to safely exit the building – as we were to discover a week later. (Your director questioned her own facility’s paperwork, asking, “She’s on the 2^nd floor? Don’t we have something on the 1^st floor for her?”)

Tuesday – Day 1: arrival at your facility by ambulance from hospital approx. 2pm

There was a lovely sign at the front desk welcoming Angela, but her room was not fully prepared. Appliances were new and still had tape on the doors, the TV was not connected, the air purifier was unplugged (dangerous, since COVID-19, RSV, and flu have been placing our elderly and most vulnerable at risk), and the wristband Bluetooth key was not functioning. We had told you 24 hours earlier that we were moving forward, but you were not ready, despite our already having paid in full.

The room had several issues we noticed immediately:

1. Standard handicap equipment and aids were distressingly absent from the bathroom.
2. Toilet seat was too low (not even “comfort” height), with no grab bar on left side
3. Shower seat was too low, too far from showerhead, with no grab bar on right side.
4. The only chair in the room did not recline, preventing our mother from elevating her legs as instructed by her medical care team.
   1. Many elderly patients are advised to elevate their legs to improve circulation, especially in patients living with congestive heart failure (CHF) and peripheral arterial disease (PAD). With no safe seat to sit on and elevate her legs, we decided to bring our own recliner into your facility from home.
5. Note: Transfer notes and diagnoses from the hospital included PAD and CHF as two of her conditions; you were aware. Both maladies require elevating the lower extremities.
6. Room temperature was erratic – running extremely hot, then extremely cold.
7. The call button malfunctioned frequently over the course of the week, a major safety concern.
8. There was no phone in the room to call the front desk when the call button malfunctioned.

An RN appeared unannounced late that evening. He came into the room somewhat frantically, turned on the bright overhead light, went to drop a clipboard on the bed to use as a desk then realized Angela was IN the bed. He told us that staff must administer meds by state law (which is not what we’d been told by you.)

That was day one.

Based on the above, Alice spent the night in our mother’s room, on an air mattress on the kitchen floor – and slept there for the next 7 nights. She got no respite at all.

Wednesday – Day 2 (first full day at the facility)

Abrupt 6am wake-up when someone entered the room, turned on the bright overhead light, emptied the trash, took a QUICK glance at the bed, and told Alice, “We have to check on them every shift.”

Alice was there all morning. She personally told you about the non-working air purifier and the missing power cord for the TV (as Sarah had also done.) Sarah spent that morning shopping for necessary assistive equipment for the bathroom which you had not provided; she returned by noon so Alice could go to work.

Morning medications were administered by staff, including newly prescribed meds from the hospital.

NOTE:

1. Your facility substituted Incruse Ellipta for Trelegy Ellipta without consulting us. Alice noticed that, questioned it and consulted with our pulmonologist. They advised that Trelegy was better for this patient, and Trelegy Ellipta was returned to the medication list. Please advise why changes in medications are authorized without notifying the patient/family.
2. Facility also substituted Matzim LA 180mg (Diltiazem HCl) for Cardizem ER 180mg. Alice called the cardiologist’s office (it was after hours by then) and spoke with the cardiologist on call. It was decided that this medication was “probably okay to substitute.”

Later in the day, with neither of us in the room, the RN returned to talk to Angela about meds administration. She said she was not capable of having that conversation at that time and requested that he please come back later.   

1. During the assessment at the hospital, you personally had asked Alice if we would be administering Angela’s meds or if your staff would. You had told us we could administer meds (since we were only there for respite care for two weeks), as long as we could be there for AM/PM meds. Alice assured you she would be.
2. We had already informed all pertinent staff that Alice would be there to administer all AM and PM meds.
3. Alice had also told the daytime RN that she (Alice) would be there to administer all meds. 

Alice had multiple conversations with the male evening RN. He took a very paternalistic approach and kept trying to school Alice on meds, particularly how to taper the prednisone dose. She has been a licensed medical professional for 4 decades, owning and running her own practice, and had been managing and administering our mother’s medications for the last 5 years. She told him so, that night, and had to repeat it at every interaction with him.

After treating her own patients that day, Alice rushed back to your facility in the evening to:

1. talk with the RN again
2. have him return all of Angela’s meds to her room
3. have the RN note in the computer that meds would be administered by family
4. administer PM meds

Thursday – Day 3

Angela rang for assistance at 7am for a shower. Your staffer T answered promptly and came as requested. When it was time for Angela to stand from the low shower seat that had no handrails on the right side, T called out to Alice, “I need your help!”

What if we hadn’t been there?

It is important to note that T was wonderful all week.  She provided everything our mother needed from an aide, including compassion. 

Medication Error – Despite everything we did above, on Thursday morning a staff person came to administer 50mg of Prednisone, which Alice had already given her. If Alice had not been present, Angela would’ve received 100mg of Prednisone that day. This put all of us on high alert. Consequently, we strongly advised our mother not to accept any meds from anyone but family. Not surprisingly, she said she felt unsafe with your staff not knowing what they were doing.

At this juncture, we all realized she could not be safely left alone at your facility.

That afternoon, while Alice was at work, staffer K came to check in while Sarah happened to be out of the room. Angela said we wouldn’t need assistance getting to dinner because family would be there with her. When it came time to transfer from chair to wheelchair, unfortunately she couldn’t stand up even with Sarah’s assistance on one side. We pushed the button for help from K – no one responded after 20 minutes. She tried again several times over the next 90 minutes. There was no response.

K showed up after dinner, explaining that she did not have the notifications turned on for her response button as she was serving dinner downstairs, and (understandably) thought we were covered. Again – what if instead of just dinner, it had been an emergency?  There is no phone in the room to call the front desk.

K was great when she did arrive – but you are severely understaffed and the system has no fallback protection.

Friday – Day 4

The day started with potential for a more restful, less stressful day for Angela, but then the Bluetooth wristband key failed again.

You had to take it away again, which essentially trapped us in the room: if Alice left, her mother could not get up on her own to open the door to let her back in. And again, there is no phone to call for help.

NOTE: Earlier in the week we’d considered leaving our mother alone overnight Friday. However, we didn’t feel safe doing that, nor did she, so again Alice slept on the kitchen floor.

Saturday – Day 5 – MAJOR FAIL

After a very good start for our mother, feeling significantly better after one day of new heart medication –

Alice got her up, dressed and down to breakfast, seating her with her new friend from the aviary. Wanting to give the facility the chance to assist Angela without us being there, Alice left to do some errands, hoping Angela would have a few good hours out of her room, making new friends – finally, on DAY FIVE.

But when Alice returned two hours later, Angela was nowhere to be seen: she had gone back to her room. Alice found her there alone, very upset, stressed, anxious and scared, which is obviously to be avoided for a person with her conditions.

Angela told Alice that the long-term battery had run out on her Inogen portable oxygen unit, which is used anytime she’s out of the room and away from the bigger O2 concentrator we’d brought from home. She always carried additional fully charged batteries, a plug to use in a wall outlet instead of batteries, and an instruction sheet with photos on how to change the battery – ready to inform any aide who came to assist, be they familiar with the device or not.

She reported that when the battery ran out, she pushed the assistance button multiple times and there was no response. When an aide did show up, the Inogen battery was replaced, but the aide didn’t know how to turn the device on even though the unit has a standard on/off button and simple instructions were provided with step-by-step photos. Very upset and knowing she had the big concentrator in her room, Angela just asked to be taken back to her room. 

Our mother was without oxygen in your respite care for 20-30 minutes.

When Alice shared that story with you and asked, “Is Angela your only resident using oxygen?” you said, “We only have one other person on O2, and she has a tank.” 

The incident was reported to the appropriate supervisor yet no one came to check on her later and no accountability or apologies were offered.

NOTE: In the first few days of our mother’s stay, Alice had shown 3 or 4 aides how to change the battery. Your RN Executive Director was in the room (as was Sarah) and told the aides, “Pay attention. Then you can show me!”

Alice stayed with our mother all day and night Saturday, to console her and once again make her feel safe. Angela did not go downstairs for dinner that evening – a tray was brought up to the room for her. Alice didn’t get a dinner tray; she ate leftovers from the fridge.

Staffer T came on duty, checked in at 7pm, wanting to help get our mother ready for bed. Alice thanked her and told her we were all set for the night.

Sunday – Day Six – PROFOUND FAIL

From T’s visit at 7 pm Saturday, until about 1:35 pm Sunday, no one came to check on Angela until an agency staff person arrived to empty trash that afternoon.

Our mother, your resident, was left unsupervised by respite care facility staff for over 18 hours. (Remember your staffer saying on Wednesday morning: “We have to check on them every shift.”)

Concerned that you might be even more short-staffed on the weekend, Alice had stayed again Saturday night, so she personally observed:

• No one came to empty the trash. 
• No one came to check on our mother.
• No one came to see if she would like some breakfast. 
• No one came to see if she would like some lunch. 

Alice continued to eat leftovers from the refrigerator, sharing them with her mother for breakfast and for lunch. 

Finally, at 1:35pm, staffer X came to empty the trash. When Alice told her she was the first person to check on Mom since 7pm Saturday, she said she was from an agency (not your employee), that it was only her 2^nd day and that there were only two aides working that day for the whole facility.

Page 8 of your Uniform Disclosure Statement states there are 27 staff for the 7-3 shift every day.

This is a breach of contract, gross negligence, endangerment of patient safety, and simply appalling.

X returned about 5 minutes later with another staff person, who wrote down our names and room number in order for us to file a complaint.

Alice knew that staffer T was back on duty for the 3-11 shift so at 4:30 pm she went to the dining room to find her for assistance in getting a dinner tray to the room. Our mother was too upset, again, to go to the dining room.

Your Executive Director addressed our formally reported complaint on Sunday evening by telling Alice that the call system wasn’t working (again.) Normally the aide gets a message on her phone, and knows which resident needs assistance. This weekend, in addition to being seriously short staffed, the internet wasn’t working so that system was down. The aides had to use walkie-talkies coordinated by the front desk … but nobody was there.

There was no apology of any kind for the lack of anyone coming for 18½ hours. 

How could we as a client and family trust that our mother’s safety and well-being were being taken care of unless we ensured one of us was present 24/7? This was no respite at all. We would have had less work, less worry, and less expense if we’d just gone straight home from the hospital.

Monday – Day 7 – Fire Alarms (literally)

This was a potential disaster for a patient with cardiac issues, especially with the stress she’d already been subjected to all week.

A resident pulled the fire alarm while Alice was downstairs meeting a visitor. As the fire alarm blared, the PA system instructed, “Exit the building. Do not use the elevators.” Angela was alone in her room at the end of the hall on the 2^nd floor, in a recliner she could not get out of without help. And no phone. She was trapped.

MAJOR STRESS FOR A RESIDENT WITH A HEART CONDITION

• No instructions had been given on what to do in the event of a fire.
• No such information was posted in the room.
• No PA announcement said it was a false alarm (it was.) 

And then, it happened again: the fire alarm sounded again 15 minutes later, with the same blaring announcements to leave the building.

Thankfully Alice was there to check and let her know those were false alarms. What if she hadn’t been there? Our mother was alone, and no update was ever broadcast on whether the building was actually on fire.

Once again, Angela had a very stressful event to deal with. Around 1 pm she told Alice she wanted to go home as she did not feel safe at the facility.

• At 3:30pm Alice sent you a text message, notifying you of the planned move home.
• At 5pm you responded, saying “I was hoping that she would do so much better with therapy, but it does not seem to be happening.” This was day 7, and our mother never had any PT or OT. Not a single session.

A nurse from a home health agency had come to do an assessment because of ankle swelling. She recommended an inappropriate type of compression stockinette (which Alice recognized and declined.) Alice provided an appropriate and proper-fitting knee-high compression stocking. The nurse also said she would schedule PT and OT evaluations, but they never happened.

Tuesday – Day 8

We left your facility and took our mother home, a week sooner than we’d contracted and paid for in advance, because of the gross negligence and unsafe environment at the facility. She had arrived comfortable and optimistic; after a week of this she was so stressed she said “Get me out of here.”

She died at home 48 hours later.

We are left with profound grief as we process the chaos, unprofessionalism, dangerous gaps in care, and severe stress our mother and family endured while in your care.

We are pained to know that a majority of our wonderful mother’s last days on this earth were spent feeling unsafe, anxious, and stressed. You advertised, promised and contracted to provide exceptional care with “expert therapists” and “all the comforts of home,” which you did not do. We demand a thorough review, refund, and assurance that the above will never happen to another patient and family ever again.

Summary

Our mother, a cardiac patient, was discharged from the hospital because she was continuously improving. Your RN Executive Director’s assessment was that she was in the right condition for your respite care as a Level II resident. Instead, 10 days later, after a week in your facility, our mother was dead.

We do not want any other family to go through what we experienced.

We did not get any of the assistance or respite we paid for and expected. Due to poor logistics and workflows, clear understaffing on many levels, lack of proper staff training, lack of physical and occupational therapy services, and a generally unsafe environment, faulty equipment, and lack of secondary safety protocols, there was no question that one of us had to be with our mother 24/7 during her time at your facility – the opposite of respite. She felt unsafe and was heavily stressed at your facility.

Steps we, the family, had to take included:

• Sarah had to urgently purchase an adjustable height toilet seat with rails on both sides so that the toilet could be used by our 93 year old mother with mobility issues.
• She also had to bring in an adjustable height shower seat with rails on both sides so that the shower could be used.
• Within hours of her arrival, our family had to transport her recliner from home so that Angela’s legs could be elevated. 
• We had to stay in her room several times while you tried to resolve the issues with the wristband Bluetooth key that wasn’t working. This essentially trapped our 93 year old mother in the room, with an unreliable call button and no phone.
• We had to notify staff that the air purifier over the door was unplugged (not remedied until the second afternoon) – important during COVID, especially for a client with CHF, COPD, on oxygen 24/7.
• We had to assist in getting the TV functioning – no power cord, cable not even plugged in.  Alice’s husband worked with your manager Friday evening – 3 days after arrival – to get this resolved.

We received absolutely zero of the “expert therapists” your website promises, and we had to bring our own “comforts of home.”

In Closing:

We want a full refund (including any charges for guest meals and cable TV) and we want action taken to correct these failures in your Respite Care service so that subsequent families do not endure what we did, even for a week.

Based on the information we’d seen on your website and had been given in person during the tour we’d taken when researching local options for respite care, we honestly felt we were making the best choice for our mother. We do not feel that way now.  Trusting you was a mistake that we can never undo, and now she’s gone.

For the family…

Dave deBronkart is a patient activist, speaker and author. This is from his blog Democratizing Healthcare