Beware

by Cinda Holt, Stevensville

All hospice care providers are not created equal! I had such a traumatic experience with a local hospice that I feel compelled to tell my story, and give this community a heads up. At the most sacred and vulnerable time in my family’s life, as my mother was within days of dying, they turned our world upside down and seriously scared me.

In January, my 97-year-old, 83 lb., mother came home from the hospital with oxygen and a catheter. Two doctors told me she had “a week, maybe two” left to live. At that time, a local hospice care team was engaged to help. 

That “week or two” turned into nearly five months while mom and I worked very hard to provide a quality of life that still brought her joy. Members of the hospice team visited us weekly. I was the sole caregiver, and mom would often say how lucky and grateful she was to have a beautiful little apartment that I built for her inside my house and a daughter who cared for her. 

Mom was getting more frail every day. On May 16, she twisted her ankle and was no longer able to move around with her rolling walker. After a day of being given her meals in bed, she announced to me that she was done, and wished to stop eating. I told her how brave she was, and that I fully supported her decision. 

In a phone call with the hospice nurse the next day, I told her of mom’s decision, and I asked about what mom’s path might look like in the near future. I voiced my expectations about mom getting more and more tired and uncomfortable, and asked about how to know when, and how, to use the meds in the Comfort Pack (Morphine, Lorazepam, etc.) to help ease her journey. The hospice nurse and social worker offered only unhelpful guidance: “Morphine is only used for pain at the end.” With advanced osteoarthritis and serious digestive and heart issues, wasn’t her daily state-of-being painful? When mom becomes unconscious how will I know if she is in pain? How will I know when “at the end” is?

Within an hour, the nurse and social worker arrived at my door and proceeded to have a conversation with me that left me feeling scolded. They voiced their “deep concern” for the scenarios I was positing, and the kinds of questions I was asking.  (Silly me – I thought they were a safe place to have these difficult and honest conversations, and to voice my innermost thoughts.) They also talked directly with my mom about her wishes and her plan to stop eating. I should state that, at 97, my mom was sharp as a tack and could effectively articulate her thoughts. 

By that same afternoon, my doctor’s office called to inform mom and me that hospice had called them to get their approval to enlist Adult Protective Services (APS) to check up on our situation. My doctor’s office informed them that they knew both of us as patients and would make a home visit that day to make sure all was well, and report back. After a home visit and thorough conversation with mom, and a separate conversation with me, our doctor’s office determined nothing was of concern at all and they would not approve calling APS. They called me after their conversation with hospice to report that hospice was happy there was no concern.

Fast forward one week and imagine my shock when I see an APS investigator at my door! She came in, saw my mom’s lovely little apartment, and saw mom (obviously well cared for) peacefully in bed wrapped in her favorite plushy blanket. She was unconscious by that point so no conversation could take place. I told the investigator that I was glad there were organizations like APS out there to protect seniors in need, but that I was also deeply offended that anyone thought that my mom was at risk. The investigator said she wasn’t aware we were so far along in the process, thanked me, and left without asking any questions. In short order, I received a letter from the Dept. of Health and Human Services, stating that on May 25th a report had been made against me for “neglect” of my mother, and that, having found no such neglect, the case “for now, is closed.”

My mother died peacefully on June 4th. I have since followed up with two conversations with the hospice’s director of quality to ask what exactly hospice expected to accomplish by calling APS. Override mom’s wishes? Remove her from her lovely home where she wanted to be? Force feed her? I was told that the team felt concern over my “caregiver stress” and therefore my ability to make good decisions on mom’s behalf. 

After years of offering my mom the best TLC a person could ask for, especially as they near the end of their life, I was beyond flabbergasted. This hospice team was with us for months, and their misreading of our environment and situation was beyond upsetting – instead of support at a difficult time, I felt totally betrayed.  Because of my many questions about pain comfort meds, it appeared they imagined I was going to try to speed up the end of my mother’s life.

I replaced that hospice the day they talked to our doctor about APS with a new hospice care provider – Hestia, in Missoula – who came in and SAVED us. They were kind, responsive, wise and talked much more specifically about how to help mom remain comfortable during her last days. They also said they immediately ascertained the love and kindness present in our home and could not understand how the previous hospice got it so wrong. 

Seeing the dramatically different approaches of these two hospice providers was a real learning moment for me. When you choose a hospice provider, it is important to understand their philosophy of care, their willingness to trust, and engage in, all levels of end-of-life discussions with family caregivers, to know whether or not religious views come into play, how much experience they have in interpreting the environment of the patient, and under what circumstances would they feel the need to contact APS.

I don’t want to see any other family go through the trauma of this experience. It was completely antithetical to everything I understood hospice care to stand for. That local hospice did not support us, they caused us harm.