Visiting Nurse Service

Our beloved one practiced kindness as evidenced by countess calls, text messages from people expressing their heartfelt condolences. I write this to honor him as he always, always advocated for doing the right, benevolent thing. He was often a voice for those without. Making end of life choices for a loved one is emotionally difficult by nature. Electing for home hospice sounds peaceful and comforting. Our experience with Visiting Nurses was mostly not. While most of the visiting hospice nurses were compassionate and patient a couple demonstrated their over booked schedule and it appeared obvious that they were to complete X number of visits per shift with a time limit per visit. We were told that because we had “already” had a visit over the previous X hours that the assigned nurse of record could not come to check on the status of the distressed and rapidly declining patient. Our beloved one especially suffered the last 36 hours of his life. The continuous angst, terror, helplessness we as untrained caregivers lived through during the 8 days of home hospice under Visiting Nurses NY “care” was hideous, with a few exceptions when nurses and phone staff expressed their genuine compassion and without saying, we knew their help was limited due to company, management guidelines. These precious hours we spent needlessly chasing our tails could have been calmer and spent comforting our loved one. We know he heard our pleas as we placed repeated calls to Visiting Nurses and it raised his fear and anxiety level. That is plain cruel. Staff who answered the "we're available 24/7, please feel free to contact us any time" number were mostly professional in demeanor, some could care less if the reason for our call was addressed or not though dutifully “connected” us to the appropriate party. One who stands in excellence is Nazzia (sp) - who did what she promised and to her I express my gratitude and urge Visiting Nurses to have her train others who take that initial call from friends and family members who are helpless and needing direction. COVID-19 times or not, integrity and FULL disclosure of services provided with date and time to be delivered is ESSENTIAL. We were left flying by the seat of our non-medically trained hospice pants. Think about it. When a loved one is discharged to home hospice the patient most likely has a days or weeks to live. We bring them home to ensure compassionate quality of life in their familiar surroundings. What we must also assure is COMPETENT support, plainly meaning health care aides who will be AVAILABLE to perform what may seem like a simple task of compassionately and quickly preserving the dying person's comfort and dignity. How many hours would a healthy person sit in their waste?! Shame on the department at Visiting Nurses NY who guide (more appropriately, manipulate) family members to select you when deciding to bring their loved one home, after plans for discharge to home hospice are implemented by staff at Memorial Sloan Kettering. MORE shame to the department at Memorial Sloan Kettering who make the decision about which hospice agency to contact because of convenience reasons or whatever your motivation without making the primary selection criteria what is BEST for the dying patient and their loved ones to care for them during the final days of precious life. Visiting Nurses - collateral materials, including website paint a rosy picture of end of life before taking the last breath. Either include full disclosure of rewrite with TRUTH. How many hours placing initially hopeful calls to you about home health aide services when after two of us calling for days, we were informed that your agency has yet to contract with a provided of health care aides. WTF?! At first, we understood that because our beloved began home hospice on a Friday that aides would not arrive until Monday. Even that sounded fishy. Hospice patients need help and die 7 days a week, 24 hours a day! How many times did we ask that our need be escalated only to be told, “the supervisor is unavailable” and I will send them a message without call back. How many repeated calls, pleas will it take to get Visiting Nurses to tell the truth? Don’t ask. There is so much more I can document here. I am writing this to WARN family members to ask through questions of Visiting Nurses NY of what and when will be provided. Get names and dates. Even though we took notes, what will that do. Our dearly departed is gone… and his last hours were less than compassionate because home hospice services were lacking. Of course, the loss of a loved one often brings anger and rage. We are angry not only because cancer took his life, but because we were unable to provide exceptional comfort to him during the final hours. The support we blindly relied upon when Visiting Nurses NY was recommended by Sloan Kettering is contributing to our morbid grief and second guessing if we made the right decision for him. This we will take to our graves.

The WORST experience in my life. Used pandemic to refuse house calls. No compassion or empathy. They ruined my last few days with my mother.

VSNY Hospice was not the experience that we thought we would receive when our loved one caught covid 19 and was declining at a very rapid rate. The initial contact that I had with the person who sends you paperwork to sign, Yolanda, was quick and helpful. Additionally, the intake nurse who came that night was very nice. They ordered the medicine right away since my grandmother couldn't breathe, this was Tuesday April 7th. 2020. On Wednesday, April 8th. I was called by a nurse, Elaine, who stated she was on her way to visit my grandmother. Then she contacted me on a conference call with her supervisor by the name of Roxanne who stated that she is concerned about her staff and they can set up video chats instead of visits. My grandmother was dying, what are video chats going to do. She then, told me the family must be there. I explained that we couldn't be there cause we had the virus. She was condescending and inquired when did I first get the virus, did I get tested for the virus, she told me I was fine to go there meanwhile my Dr. told me I couldn't go out until 2 weeks. She said, "Your grandmother needs you now, she's dying, why don't you want to be there. Then she said if you aren't going there then neither are we. She said perhaps it's time to put her in a nursing home. I told her that her wishes were to die in the home and that's what hospice is supposed to provide patients with, in home care. I told her she had some nerve saying these things to me cause I have been very active in my grandmother's care and I felt terrible that I came down with the virus and couldn't be there in her last days. I called her supervisor, Casandra, the medical director and she apologized and said she would train her better. She also stated that she will make sure someone visits my grandmother that day, which was Wednesday and then more frequently since her decline was so rapid. I felt better after speaking to her, but then received a call from Elaine, the nurse, stating that since Roxanne put a "hold" on my grandmother's case, they sent her elsewhere and now it was past 4:00 PM so she is off. She said she will visit my grandma first thing in the AM. Well my grandmother died at 3:20 AM and this makes me livid because not only did Roxanne make me feel horrible after judging me and saying terrible things to me, but she spitefully put a hold on her care and having a visit from the hospice nurse which could have made her more comfortable. Additionally, once the aide called me to say that she isn't breathing, I called hospice and asked if someone clinical can visit to make sure she died because they were giving her medicine and it was so quick that I wanted someone clinical to confirm she didn't have vital signs. They told me they were sorry but the on call nurse don't have full protective gear so they can't come in but they can do a video call. I said forget it. Called the funeral director and asked them to please just make sure she doesn't have a pulse or vitals and he said they check for that. NO ONE from hospice even called to share their condolences. I had hospice dealings for my grandfather and they were wonderful so my advice is to not use this hospice service.