How Hospice Failed My Mother

How Hospice Failed My MotherThis is a hard blog post to write not only because Hospice is such a revered organization, but also because most of my posts are about current law, my legal practice or other interesting topics that aren’t so very personal.  This is about as personal as it gets.

My mother died on Father’s Day of 2015. It was June 21st to be specific.  It’s taken me almost one year to write this without anger. I started writing this a number of times and got “in the weeds” going into too many irrelevant details to demonstrate the frustration of it all. At this point, I don’t want to remember the moment-by-moment indignities which will make this post about 10,000 words shorter.

Mom was living with terminal skin cancer. She was 83 years old and had been in a nursing home for almost two years since she had her leg amputated after being over-radiated for skin cancer. The Thursday before Father’s Day I got a frantic phone call on my cell phone from Mom just as I was heading into a big meeting that I could neither avoid nor escape.

Mom was asking me where her suitcase was because her father was going to be picking her up from school and she needed to start packing! “He’ll be here any minute!” This was clearly a break with reality since he died many years before I was even born. I suffered through the meeting and flew over to the nursing home just in time to see Mom being consoled by her nurse, muttering: “Yes, everyone gets confused sometime, I was just confused….” She then looked at me and apologized for worrying me. Yes, she did worry me – very much.

I pulled the nurse aside and asked if she should go to the hospital – was she having a stroke? I must have looked like I was about to have a stroke because this is when the nurse handed me the phone with a Hospice nurse on the other end. Even though Mom was in a nursing home, we had signed up with Hospice months earlier for when “the time came.” So Mom was given her meals and medication at the nursing home and Hospice would counsel us on end-of-life issues at the appropriate time.

The Hospice nurse told me on the phone that this was the beginning of the end and there was no reason to take her to the hospital. Mom was getting confused because her organs were beginning to shut down, her fluids weren’t being property filtered and she was on the path to an end. An hour later the Hospice nurse appeared at the nursing home and calmed us down and even advised me that my mother had been having conversations with her mother who died 80 years earlier – it was very comforting to her.

The Hospice nurse advised, and we agreed, that she’d be better off in a familiar setting like her nursing home room, rather than an emergency room and sterile hospital room as the end neared, especially since nothing could be done medically for her.

I asked our Hospice nurse a crucial question: Can we move Mom into the local Hospice Center where the ratio of nurses to patients is very low? Seven years earlier my Dad died under Hospice care and I was so impressed how they doted on him, took care of his every need and were there by his side 24/7. This was important because as a patient begins to transition, they sometimes become very needy.

At Mom’s nursing home, nice as it was, nurses have a lot of patients in their charge. Residents are in various stages of health but on the average Mom was lucky to see her nurse twice, maybe three times a day for medication rounds. When Mom got to talk to her nurse, it wasn’t for long as the nurse was usually beckoned by some other patient in some other room. Certified Nurses’ Aides and assistants do most everything else.

I was stunned with the official Hospice response, which is paraphrased here: “Your mother’s primary nursing, medication and other palliative care is with the nursing home staff; we simply provide counselling to her and your family as she transitions.” What? What?? I know first-hand the level of care required when one is actively dying and these poor nurses cannot possibly keep up with Mom’s deteriorating condition. I became……..vocal.

Again, paraphrasing Hospice: “Well, then, you tell the nursing home that they need to provide your mother with either her own nurse, or get another nurse to assist the nurse on staff.” Yeah, right. Nursing homes are always on a shoe-string budget and sometimes they are short of nurses on an average day. They don’t have nurses lying around like extra chairs at the end of the hallway. When I mentioned this to the nursing home administrator I was told that this was a typical tension between Hospice and a facility like theirs. “We’ll do the best we can…” but no promises were made.

Knowing what was about to happen, I asked our Hospice nurse if Mom could be moved before she became so critical and again was told no.  Isn’t this the job of Hospice to take care of Mom’s medication and make sure she’s comfortable when we cannot be here and her nurse is on rounds? “No. It’s a matter of insurances. Your mother’s insurance pays the nursing home for her physical care, not us. Medicare won’t pay for us and the nursing home for the same care. The only way we can move your mother is if the nursing home care isn’t keeping pace with her needs.

That’s a critical sentence.

Here’s where I’m fuzzy on details – I just remember the course of the next few days were descending into an awful state.

Friday Mom was somewhat verbal and was still able to look at and smile at funny/cute images I’d show her from Facebook on my iPad. Photos of animals and babies – she loved cute baby photos. She’d point and smile and wink when she wasn’t sleeping.

When I arrived early on Saturday morning, however, Mom was in bad shape. She wasn’t propped up in bed to assist with breathing – she was lying flat on her back, wheezing and moaning. They changed her sheets at the nursing home and the staff left her on her back. She couldn’t breathe. The moaning was because her nurse hadn’t gotten her pain meds yet and she was obviously in some degree of pain. This is completely antithetical to what Hospice is all about – the patient should be free from pain and discomfort at all times to the best of everyone’s ability. But Hospice simply wasn’t there.

At this point we, as a family, made it our business to get to know our shift nurse very well. Mom’s comfort and care was completely dependent upon it. My sister, her family and myself only left her side for minutes at a time and to go home late at night to sleep, which we hated to do. The in-patient Hospice facility provides sleeping quarters in the patient’s room  – but the nursing home has a hard floor.

Try as they might, the nursing home staff nurses just couldn’t keep up with Mom’s deteriorating condition.

I’ll spare the additional indignities that made us frantic. On Saturday night, I made the call. I called our Hospice nurse and told her that the nursing home cannot keep up, Mom wasn’t resting and we were having difficulty coping with the inefficiencies of her care and the nursing staff was strained, to say the least. I was assured that the nurse would come by “first thing Sunday morning”. Sunday – Father’s Day.  I wanted Mom moved NOW. Nope, wasn’t going to happen.

The Hospice nurse did show up – at 12:30 on Sunday when my sister and I finally stepped out for a brief lunch leaving my brother-in-law with Mom.  When we returned my brother-in-law said, “The Hospice nurse arrived – took Mom’s vital signs and said, believe it or not, they’re all normal. The nurse said we’ve got a long way to go, days even before Mom dies, and Mom cannot be moved yet to Hospice.”

Mom died 10 hours later. And in that interceding 10 hours we resorted to running down the hallway for the nurse, pleading for her medications, practically begging aides to help move her to a more comfortable spot, and, before too long Mom’s nurse was in tears. She was torn between taking care of her other patients and her commitment to help Mom who was one of her favorite patients over the years. But she couldn’t be in two places at once.

By the evening we were exhausted and Mom was in and out of distress, even after suctioning. This made us nuts. She was not at peace at all. Remember, based on the Hospice nurse’s assessment, Mom had days of this to go. After all….her vitals were “normal”. At the foot of Mom’s bed I called the Hospice supervisor’s supervisor absolutely unloaded on this poor woman who had never spoken with me before.

You’ve heard how patients often are somewhat oriented even though they appear to be sleeping or in a coma? Mom began to stir and move about the bed. I ended the phone call and told my sister I was going home to have this fight – away from Mom’s ears.

As I was being consoled by the Hospice supervisor at home and advised that “of course” Mom would be moved, I had an incoming call advising that Mom died.

By the time I made it back to the nursing home, that very same Hospice nurse who stood by Hospice protocol and insurance coverage issues and provided a prognosis of “days” before Mom would pass, was also in attendance at the foot of my mother’s bed. She said, and I quote: “Well………that was quick!”

To this day I have no words about that response.  I did let her have it and she said she would pass on our disappointment, anger and aggravation. And to this day Hospice Palm Harbor hasn’t addressed any of this. Yes, we get form letters about how to deal with grief. But about Mom and her specific unquiet death? Nothing.

Now, before I get regaled with stories of how wonderful Hospice was with their loved ones in their final days: I know. I get it.  My father was treated with dignity and care as he lay dying at home with a Hospice nurse around the clock until he passed.  I sang praises as well. In fact, as the (then) President of our local Chamber of Commerce I did the ribbon cutting at our Hospice Facility in Palm Harbor in the late 1990s as Belinda Womack sang, “Bless This House”. How ironic I thought as Mom lay dying that I couldn’t help her get into the very same place I officially opened years earlier.

But unless Mom was an exception, there may be many patients out there like Mom in nursing homes who are given less than ideal care when Medicare is paying a nursing home and not Hospice. For any adult child, the final hours of their parent’s life should be peaceful and easy no matter the cost. I can’t help but think no one was well served in Mom’s case. Not us family, not the facility’s staff and certainly not Mom.

Author Bio: Walt Blenner is a Palm Harbor attorney  who is an “AV” (highest) rated by and Martindale Hubbell. He has successfully represented hundreds of clients in Palm Harbor, Dunedin, New Port Richey as well as Tampa and looks forward to helping you and your family whether in the area of personal injury, estate planning or corporate representation.
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Image credit: pat138241

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