My mom had congestive heart failure. Others have cancer. There are many other diseases, I’m sure. All share a common thread. They are “terminal.” When you can get 2 doctors to sign off that you have less than 6 months to live, you qualify for Hospice. Before that, they talk about palliative care. In the case of my mom, she went from palliative care to home Hospice care to dying in 2 weeks time. Perhaps that was a blessing.

Read any of the literature about Hospice and it will describe the goal to be “comfort care” and “symptom management.” Additionally, it will talk about providing the patient and their families with a team of nurses, social workers, spiritual counselors, and volunteers to support and educate family members. Sounds good on paper, but I see the reality of the situation a little differently.

In an age where we overuse euphemisms to put a positive spin on reality, I think we sugar coat things to the point of distortion. In the case of “comfort care” and “symptom management,” what they are really saying is that they will prescribe and administer powerful narcotics to knock the patient out. In the case of my mom this included Risperidone (Resperdal), Alprazolam (Xanax), Hydromorphone (Dilaudid), Haloperidol (Haldol), and Quetiapine (Seroquel).

As with any medication, proper dosage is the key to effectiveness. Initially, we were all over the map trying to find “comfort care” and “symptom management.” This was exasperated by the fact that our assigned nurse went on vacation the day after her first visit. Thankfully, nurses were on call 24/7, but with every call it was a different nurse, and a different dosage assessment.

My family and I quickly learned the drug’s effects, and soon we became better able to control symptoms. It wasn’t till we said, “We’re driving this bus” that we found any stability in symptom management. This came after my Dad was awoken every 2 hours one night because of my mom’s agitation. Much of her agitation were new symptoms that I attribute to the reaction to the drugs being prescribed. The Hospice solution was of course, more drugs.

The Hospice drug treatment consisted of scheduled medications, as well as drugs that could be used on an as needed basis. My mom must have had a low tolerance to these medications because we didn’t need to administer these drugs near as often as we were allowed. My mom was pretty much out of it, most of the time, but at least my Dad could get some sleep. Quality of life for my mom digressed from the very beginning of Hospice care.

As a side note, most, if not all of these drugs had warnings that they should not be given to elderly patients with dementia, which described my mother quite accurately. I have no idea whether there were alternatives. I doubt there were. I’ll chalk this up to the nature of the beast.

Another claim made by the Hospice literature is that Hospice neither speeds up nor slows down the dying process. I vehemently disagree with this notion. I see Hospice as one step away from euthanasia. Euthanasia would have been much harder for my family to come to grips with than Hospice care, but in hind sight, euthanasia may have been more humane. Tough decision. Really. Tough. Decision. Not that euthanasia was a choice.

In the end, my mom died in her sleep. I guess we should find solace it that. But the process wasn’t pretty, and I think Hospice could have done a better job of managing her care. Requests for volunteers went unanswered. It wasn’t until the last nurse to visit my mom that we had any confidence it their collective abilities. The social worker did nothing to help, and had the audacity to tell me she did. She was trying to cover her butt in front of a case worker, and I did not let that slide.

Dying is tough, and Hospice seems to be a difficult and necessary step in patient care. I have heard many positive Hospice stories from friends, so I guess I will write this off as a bad experience. I suppose this document is my attempt to draw closure on the passing of my mother. I’m not going to name names, as that would serve no real purpose. My intent is to share my story in the hopes that people see the need to actively and aggressively manage the Hospice care their loved ones receive. Remember, you are driving the bus.

I’d like to finish with a description of the overall health care my mother received. All of her care was through the same health care system. From her long time personal physician, to the 2 hospitals she visited, to the out patient home health care, and finally Hospice, all services were under the same health care system. For the most part, care was good. Hospice care was far and away the least competent group we worked with.

In particular, the RNs in the hospital and the RNs visiting her at home were exemplary. From my experience, the RNs are the backbone of our health care system. To a person, I couldn’t be more happy with the care they provided, both to the patient and the family. Doctors were hit and miss, to the point where the doctor assigned to mom in her last hospital stay was virtually missing in action.

Perhaps, the most disturbing thing to me were the medical records systems. Nobody had access to my mom’s medical records. Each group had their own information system, and their own version of mom’s information. And the hospital must throw their information away after each visit because each visit started at square one. Same basic information, over and over and over. And all this under the umbrella of one health care system.

Keeping track of my mom’s medications was a difficult task. Her personal physician’s records were chronically one version behind the latest changes. And it was up to us to correct their records. The list of medications shared with the hospital must have been in the form of a printout (or fax), then entered by hand, because drugs would mysteriously fall off the list.

As a software developer and systems analyst, I am sensitive to these things. There is no concept of a central repository of patient information. Instead, they all have their own version of the same information, all entered by hand. I know, I watched this exercise repeated many times. Until they can cooperatively share and maintain one version of my mom’s information, the system is fraught with mistakes, inconsistencies, and repetitive tasks unrelated to the direct care of the patient. The health care information system is fundamentally flawed.

Additionally, the computer systems used to maintain this information are antiquated. I swear the hospital systems are based on Windows 2000. More secure than Windows XP, but completely out of date. The software running on these systems is a hodgepodge of applications, each with their own operational idiosyncrasies, making it unnecessarily difficult for the health care professionals to do their job. All of these applications are based on design principles of yesteryear, and software tools that are no longer being supported.

Am I bitter? I didn’t think so until I re-read this post. I’d like to think I made a pretty accurate assessment of our experiences. Perhaps I’m jaded. Perhaps we have a problem. I’ll leave it to the reader to decide.