So Much for "First Do No Harm..."
If you are looking at Trust Pilot for guidance about choosing a hospice, you probably are desperately searching while feeling the pressure of the clock ticking. Even though we had the recommendation of our mother's independent living facility, that's how it felt for our family. So, with nothing more than a 10-minute visit from a nurse who acted more as a salesperson, we signed on to Good Shepherd for at-home "care." In retrospect, of all of the regrets I've had in life, this decision tops my list.
One of the main reasons we chose the path of hospice at all was because he told us that, instead of needing to call 911 and having our mother end up in the ER, we would be able to pick up the phone and have instant access to a nurse with answers. Instant often turned out to be 35-40 minutes, with callbacks from overworked, beleaguered on-call staff.
When we reached out to the nurse/salesperson by email--twice--with concerns, he did not respond.
When the nurse we were assigned called to schedule an initial visit,
her very first words were that she had 7 other appointments at our mom's independent living facility before she could get to us. The implicit message: get in line. When we met her, she seemed exhausted, not particularly engaged or warm but competent and knowledgeable. As it turned out, she would be the highlight of our experience with GS Hospice.
My sister met with a social worker and instructed her about a matter to avoid if she spoke with me. The social worker called me to "check in" and immediately raised the very issue that my sister told her to avoid.
It happens that another family at our mom's independent living facility and whose own mother was also in GS Hospice care had the same social worker. Before we said a word, they described the social worker this way: "She's 12," referring to her emotional age and maturity. The social worker cheerfully called my sister later to check in, oblivious to her mistake. When my sister reminded her, the social worker burst into tears.
It gets worse:
When we brought these and other concerns to the CEO of the hospice, he was dismissive and defensive, suggesting that these criticisms were clouded by grief. In other words, people who are grieving aren't capable of making rational observations, a condescending and, in this case, self-serving response.
GS Hospice provides the services of a grief counselor for the family. Ours called me twice. Each time, I told her I was not interested in grief counseling but the second time, I offered to provide feedback about the experience our family was having with the Hospice and revealed to her that we were planning to take our concerns to the board. The next day, the CEO wrote to my brother trying to dissuade us from contacting the board. Clearly, this counselor went to her boss and disclosed a conversation which should have been held confidential by the standards of every mental health profession.
We elevated our concerns to the board. We told them we were not interested in condolences or apologies and had no interest in litigation--that our goal was simply to make sure other families did not endure the same experience. Initially, we received what seemed to be an appropriate reply that suggested they would investigate. We offered the board to call us with any questions. They never did. Instead, we received a carefully crafted reply clearly written by their lawyers absolving themselves of any responsibility.
Initially, our assumption with their staff was that they had plenty of caring, compassionate, professionals and that we had simply drawn the short straw. GS Hospice is a large organization but we had naively assumed that as a nonprofit with a long history, they would be patient and family centered. Instead, they turned out to be more like their hedge-fund owned competitors: understaffed, relying on inexperienced practitioners, and responding to concerns from a legal rather than ethical perspective.
No large organization is going to have a perfect staff but when leadership is lacking, the problems become systemic and the agency becomes dysfunctional, the outcome for us with GS Hospice. It cost us profoundly in the care of our mother and compounded a family crisis that comes with such a profound loss.