Shared Stories

Story 1:

Relationship: Family

My Story: Elderly family member (88 yr) residing in my home for 3 years. He entered local large hospital facility from ER to the intermediate care unit for 5 days and then onto regular room for 1 day and then dismissed. (DX Liver abscess) No discharge planner contacted me until 1 day prior to discharge from hospital. Luckily, as a healthcare worker/caregiver I knew the “ropes”. He was not going to return home this time and no one had asked if this was the case. I visited rehab centers, assisted living centers and nursing homes during his stay to find a bed (which is difficult to find in this city overnight). Arrangements had to made and not just the day prior to discharge. Secondly, the home meds, digoxin, cardizem, actos and htcz were neglected to be continued until after I brought this to their attention 3-4 days into the stay. Third, there was no physician contact with the family except on the weekend (change of hospitalist) and the patient has dementia. Fourth, I asked them to observe his lung status as he was not deep breathing due to the pain level. He was kept an extra day at the end needing breathing treatments. Fortunately, I arranged the rehab stay directly after discharge, the assisted living facility bed, and stayed on top of the nurses about communication and medications. Now, he is in retirement facility and I arranged home health and physical therapy for strengthening. Has had 3 falls since discharge from hospital.

My Experience Was: Negative

What could have been done to improve situation: 1. Communication between the nurses and family/patient. 2. Collaboration between disciplines and family. 3. Review of medication profile with physicians/nurses and look into discrepancies 4. Discharge planning begun with family included (not just patient). As my family member thought he was returning home and was safe. He had a history of falls and fire dangers when left alone all day. (most frequently had fallen when I was at work, fractured his arm, broke his glasses when tripping over a garden hose, also had forgotten he had left something cooking in the oven until another family member arrived). Physicians and nurses in a busy facility do not know all of this history as the patient is pushed through the system so quickly. Patient comes off as being alert and oriented upon initial assessments and the cognitive deficits are really not picked up. 5. Case managers need to meet at least with the family/and patient early on to look at proper arrangements which need to be met to keep these patients safe after discharge. As a home health nurse myself I have to mention an example of improper discharge planning from the hospital. The patient was sent home with a new G tube and a pump and we were to teach the family, however upon arrival no one had bothered to ask if the patient had electricity. (patient already in the home with the pump).

Story 2:

Relationship: Family

My Story:My daughter was released from a hospital 4 weeks after suffering an internal decapitation – a very rare injury to survive. She had occipital-cervical fusion and suffers severe nerve damage. She can’t swallow, talk, and her eyes are crossed so her vision is messed up. She has seen a primary care doctor 2 times and had a spine evaluation. In 5 weeks – no other care! Can’t get her into Rehab (uninsured), Denver Health refused to see her (no money). She is on stomach feedings. She absolutely needs rehab but we can’t get it for her. She is still in a halo. No one has yet tested her nerves. We don’t know if they are permanently damaged or not, but rehab would help. She is still in a critical time of recovery and we can’t get help! No one is addressing the numbness in her right leg and no CT’s have been taken of her lower back. She can’t even swallow her own saliva! She does walk, has no brain damage, and is fully prepared to fight for everything!

My Experience Was: Negative

What could have been done to improve situation: She could have received more rehab in the hospital, nerve testing, better pain medication, more thorough care overall. Note that she was in a hospital in Nebraska, not Denver. They released her to me to drive her home by myself in my personal vehicle, and gave no instructions as to her care to me. They gave care instructions to her, so since she has paralyzed vocal chords, it was hard to communicate to me in the 500 mile car ride home what needs she had. She should be seen by a speech therapist, physical therapist, neurologist, and nutritionist. We have no money, so no one will see us.

Story 3:

Relationship: Self

My Story: I was working Sunday night in the ER when a patient came in short of breath. He had just gotten out of the hospital 2 days earlier (Friday afternoon). He produced a hospital discharge sheet, hand written and sloppy, outlining his medical regimen given to him by the hospitalist. This conflicted with the pristine medicine sheet that his trusted family doctor had given him the week before his hospitalization. He planned on checking with his family doc that Monday to determine the best route to go in regards to his medicine. I asked him which list was he using through the weekend. He explained to me that he wasn’t using either as I wrote his admission orders for this now hypertensive patient with an exacerbation of his congestive heart failure due to “noncompliance” with his medicines.

My Experience Was: Negative

What could have been done to improve situation: The experience was certainly negative for the patient. I wondered that if the person who was discharging this patient had stated, “I know that this medicine list given to you by DR X in the hospital is different than the one given to you by Dr Y, your family doctor, but we want you to take the meds as outlined on your sheet here until you see Dr Y. He may adjust your medicines at that time. If you have any questions through the weekend, please call me at this number. Do you have any questions before you go home today in regards to your medicines or your discharge?” This would have been a very cost effective, though crucial, conversation, eh?

Story 4:

Relationship: Family

My Story: 75 y.o. male with aggressive form of prostate cancer with metastases to bone. Wife, 72 y.o. non-clinical is the caregiver. Admitted for stent placement in kidney due to patient being unable to void. Friday afternoon at 6 p.m. he is released from the hospital with kidney catheter in place and foley catheter. Wife given dressing material and told to change kidney dressing in the morning. No instruction given. Discharged with a prescription for Dilaudid by mouth. On the drive home, the wife stops at her pharmacy with the prescription and is told they do not stock Dilaudid. She is told she must obtain this from the hospital pharmacy which is now closed. Takes husband home. Next morning she proceeds to remove the old dressing and faints at the sight of the catheter draining from his kidney. When she recovers, she called me for assistance.

My Experience Was: Negative

What could have been done to improve situation: Arrange for Home Health Nurse to change the dressing. Physician should know that pharmacies do not stock Dilaudid p.o. as it is highly valued as a street drug. Instructed the wife on how to empty the foley cath bag and, if Home Health was not arranged, at least show her how to change the dressing and what she should expect to see. No instructions given on signs and symptoms to watch for.

Story 5:

Relationship: Family

My Story: My mother-in-law had diverticulitis at age 77. She was hospitalized for under 48 hours and sent home, still in pain. She was readmitted within 36 hours with an acute abdomen. She had surgery and a temporary colostomy. They also placed a J-tube. Two days later she dropped her hematocrit and had urinary retention. They placed a foley. She had upper and lower endoscopies in the morning followed by a CT scan. They found she had bled into her rectus muscle from placement of the J-tube. They removed it and gave her two units of blood. They called her husband to take her home as soon as the blood was in. At that point she had not been out of bed for three days! We intervened and got her sent to a SNF. Her primary physician, who was supposed to follow her there, had no idea why she was there or what her medicines were supposed to be. They gave her no medicines and forgot to feed her for the first 12 hours. In the morning she called and begged us to get her out of there before they killed her. We came and took her home. We found three sets of conflicting discharge orders, all of which her husband was trying to follow. They had no training in colostomy or foley care (She had both!) It took another day to get a home health nurse in, and she was the only positive in this entire experience.

My Experience Was: Negative

What could have been done to improve situation: First of all, they could have listened to her on her first admission and not discharged her at a time when she was still in severe pain. Second of all they could have examined her when her hematocrit dropped. She weighed 96 pounds, so I am sure the 2-unit hematoma in her lower abdominal wall was pretty obvious. Third, they could have understood that a frail elderly woman cared for by her elderly husband could not go home three days after major surgery when she had never been out of bed. Fourth, the communication with her PCP should have been much better. Fifth, they should never have been sent home without foley and colostomy training. Sixth, they should have had very clear explanations of the discharge plans and home health follow-up to be sure they were all set.

Story 6:

Relationship: Self

My Story: I was admitted for outpatient surgery at a local hospital. The surgeon had advised me I would be in observation “probably until the afternoon” and that if any problems arose, I would be admitted for observation overnight. I arrived to the hospital at 6:20 am, was admitted and surgery was performed under general anesthesia. My first memory after surgery was a woman’s voice stating she would “get my husband and then I would get in a wheelchair to go home”. I was very heavily sedated and could not even see her. My next memory was hearing her tell me to put my feet down, and I think she was dressing me. The next memory was getting in the passenger seat of my car and the seatbelt made me feel trapped, but I couldn’t speak! Later in the evening, I was in a lot of pain and asked my husband about the discharge instructions. He didn’t know as he was gone. The discharge nurse had discussed the plan with my friend in the waiting room. No one knew I would be sent home in 3 hrs! The next problem was that I could not urinate. I called a friend who was a nurse and she advised me to call the hospital. When I called, they explained I had a catheter and it may take some time as I may be experiencing bladder spasms. I then called my doctor who advised me to try OTC pyridium. It was frightful.

My Experience Was: Negative

What could have been done to improve situation: I felt I was rushed out of the hospital before I was awake from sedation. I also was unaware I had received catheterization. I have a history of bladder spasms after catheterization, but no one asked. First, the nurse should have allowed me to awaken, then shared discharge instructions with me, while asking me to repeat them to ensure I heard and understood her. Second, I should have been asked to drink and urinate before leaving the hospital. Since I couldn’t urinate, this problem could have been treated in observation before discharge. Lastly, the discharge instructions should also have been reviewed with my husband. I believe if the hospital developed a protocol for general anesthesia which allowed a patient time to awaken before discharge, this would have proven a very positive experience. I also believe the average person would have gone back to the emergency room when they realized they could not urinate. It was 6 hours after my discharge before I began to urinate, and it was days before the cystitis and bladder spasms resolved. I self managed my symptoms and made it through. As a nurse case manager, I understood the importance of transition care, but I did not receive it when I was in need. The positive part is that I can take this experience, and use it in my own case management practice to ensure others do not go through what I experienced!

Story 7:

Relationship: Family

My Story: When my father broke his hip 3 years ago his condition of “mild dementia” turned into “major dementia” while in the hospital. He has never improved and is bed bound as he was not capable of retaining PT instruction after hip replacement surgery. No doctor, even his neurologist, had warned me that a sudden change to his daily routine would cause his dementia (which up to this point had not been severe)to worsen. No transition training occurred and at 47 I learned how to change diapers by watching the CNAs at the hospital. I learned what his dementia condition really meant from his PT instructor, that he would never improve and that the father I’d known was gone forever. No doctor or nurse ever had that talk with me. I never knew that dementia was the umbrella over a myriad of mental conditions, one of which is Alzheimer’s. I had always thought that dementia was like senility, you had some problems figuring out things but could manage with some help. God forgive me for my ignorance.

My Experience Was: Negative

What could have been done to improve situation: 1) When any doctor or nurse determines a patient may have dementia, even early onset, explain the repercussions to the family. Make sure they understand this condition will transition to more severe stages, especially after a hospital stay. There is no cure, it will only get worse. The patient will continue to regress and can live for many, many years, even in an institution. 2) Make sure there is good, realistic council available for the family before a patient is sent home. Regardess of the disease.

Story 8:

Relationship: Family

My Story: 66 year old cousin with MR/CP (previously lived with 82 year old aunt) admitted to hospital for inability to ambulate. Dilantin level critical, MRI indicated cervical stenosis. Laminectomy performed. Post op 48 hours temp 102.5 for 3+ days. No follow up other than CXR(neg). After prompting from family septic workup revealed UTI (several attempts to remind staff to encourage q2h urinal). Loose stools followed, and with prompting from family, CDiff culture was obtained. During this time patient was placed in diapers for loose stools (never incontinent previously). Afebrile for 24 hours and transferred to a skilled facility. Now two months post op and diapers, another UTI, + CDiff, + DVT , heel ulcer, bed sore and wt loss 12 pounds in 8 weeks. All could have been prevented if hospital and skilled care staff would have listened to family concerns (3 family members are RNs). What can a family do if they cannot get medical staff to listen? It is most important to be involved in care and visually inspect for skin care issues. Unfortunately we thought weekly meetings with staff would help but we continue to see issues.

My Experience Was: Negative

What could have been done to improve situation: We have no other options other than having a family member provide one on one care. The following are steps we tried to take to prevent these issues and turn this into a positive experience. 1. Meet with nursing staff and medical staff to provide history to include (special needs, likes, and dislikes) 2. Constant reminders to staff (q2h urinals and AM/PM bsc) so patient does not hold urge to urinate or have difficulty with stools. 3. Encourage staff to monitor I/O, encourage fluids, and document meal likes/dislikes 4. Meet with dietician to assist with meal suggestions. 5. Remind staff to assist patient with intake due to change in ability to utilize both hands post op due to expected atrophy. 6. Inspect room/bedside to ensure patient has access to fluids, appropriate call bell, and items to help pass the time if let unattended. 7. Ask family member if they have any concerns, does anything hurt? If unable to verbalize look for signs (change in body posture, grimace, eyes) 8. Inspect body for skin care issues, heels, feet, elbows, hips, shoulders, groin, buttocks and report findings to your doctor and nursing staff. Help with care when possible. 9. Meet with complete care team, PT, OT, Social Services, Nursing Administration and Nutritional Services. Talk to you doctor directly if necessary. Bring up issues as they occur. 10. Attend PT/OT and activities These are steps we have taken to try to ensure the best possible care for our family member. Unfortunately our efforts have not helped. We also spend time daily feeding.

Story 9:

Relationship: Self

My Story: In 2005, Mom was falling a lot, she had polio when she was 7 years old, it affected her back. I asked Mom to move in with me in 2003, I had a job and she stayed home alone. She was getting aroung OK with a walker, but as she started to fall more, I also lost my job; the contract was shifted to another shop. Vermont had a new program, Long Term Care, we were enrolled and I was able to stay home and have a small income to live on. The nurses would come to evaluate the amount of hours it took for her care. Now in 2010, it has gotten progressively worse. I use a lift day and night, she no longer can stand or do so many things now. She barely only hears in one ear, she has had some strokes that have taken most of her ability to speak away and very hard to understand, she is both French and English, I don’t always know which language she is trying to speak. As a caretaker, I am tired all the time, sorely under paid, the state seems to set a wage and hours and due to the economy, take it away. I also pay for health insurance on my own. This is where it would be a wonderful benefit in the program, to have health insurance offered to cut my cost. I am very thankful for this program.

My Experience Was: Positive