Last summer, we were faced with the decision regarding Hospice services for my mother. Going in, I had little knowledge or experience with Hospice. Two of my grandparents were on Hospice at the end of their lives, and there was some family turmoil regarding it. But I was young, living in another city, and either pregnant or had a new baby (they were on Hospice at different times). The nitty gritty of it all was far removed from my world, though I loved them dearly and tried to be there near the end. My mom, however, feared Hospice. She felt they speeded death. Or allowed family members to speed death.
As the decision approached, an Oncology Nurse at the hospital met with me to explain the differences and see what our goals were. What I found was that Hospice means different things to different people. As a doctor told me a few weeks ago, his impression was that Hospice speeds death in a comfortable manner. He was the first professional to ever say that to me. In some cases, I believe he is correct. But back to my discussion with the Oncology Nurse. Basically, there are two camps of Hospice. On one side, all medicines are discontinued expect those for pain and nausea regardless of the patient’s terminal condition. The other camp believes that, while a patient is terminal, life should be as full and as long as reasonably possible. In other words, you may have terminal cancer that will take your life 6 months from now, but you shouldn’t die 4 months earlier from a Urinary Tract Infection or have a stroke because you no longer take medicine for your high blood pressure. To us, one side’s goal was to approach the end quickly and peacefully. The other’s was to enjoy it to the fullest until the patient was truly at the end.
We opted for a company that was extremely life affirming. My mother had cancer and heart failure from chemotherapy. Therefore, we did not treat those conditions. However, everything that she wanted treatment for, she received treatment. Pneumonia, Urinary Tract Infections, Dehydration from Infections, High Blood Pressure. The staff provided us great support and encouragement. They contracted a physical therapist to train us in how to care for Mom as her abilities changed. Unfortunately, a time came that my mom became too much for us to handle. I was failing at the balancing act. I couldn’t devote enough attention to my husband and children, nor could I devote enough time to her. She recognized this as well and decided to go into a nursing home.
This is where my title comes in. While I understood the differences in Hospice philosophies, I did not realize that the bulk of our local medical community had one view of Hospice. The view contrary to the one we held.
Mom and I had many discussions before she became very ill. We discussed feeding tubes and ventilators. Cremation versus burial. We discussed money and costs. We discussed dividing her belongings after her death. We discussed the impact of her end of life and death on her grandchildren. Should she die in their home? What if they were to find her? Should they be present? The conversations no one wants to have. She decided not to put these into writing for the simple reason that there are too many contingencies. Her idea was that she made her wishes clear to me and gave me the legal power to carry them out.
The funny thing is (not really funny), I always envisioned battles between doctors and patients regarding the removal of life support. In reality, most doctors did not want to provide any care because she was a “Hospice Patient.” It started with the need for antibiotics for a Urinary Tract Infection. UTIs in the elderly can be brutal. It’s not uncommon for a simple infection to cause changes in mental status along with a general shut down of the body. Then it was the need for a food and hydration source. The opinion was that since she couldn’t feed herself, she was ready to die. We were told things like “you’re delaying the inevitable,” an argument that could be used for any life sustaining action. Eat lunch today? Well, you’ve just delayed the inevitable. One doctor said she shouldn’t have any treatment because she hadn’t talked to him in three days. He went so far as to refer us to a Medical Ethics Committee for the horrendous act of treating her UTI and Sepsis. And having a feeding tube placed, as it was one of those wishes she had made clear to me. And for clarification, feeding tubes will not grant you immortality. If it was truly Mom’s time, she would have died regardless. Her tube has been in for about a month now.
To admit Mom to the hospital, we had to sever our relationship with Hospice. We decided not to go back solely because of the predominant view in the local medical community that Hospice patients should have high doses of morphine and anti-nausea medicine to ensure tolerance of the morphine. I truly miss our Hospice team. They were loving and compassionate, but we had to do what is best for Mom.
So what have I learned from all this? In regards to Hospice, it’s important to understand the predominate view even if it conflicts with my own views or even the views of the Hospice provider. On a larger scale, understanding the cultural connotative meaning of a word or idea outweighs my own understanding of the denotative meaning. Example: I may know what a Classical Liberal is, but modern culture has a connotative definition of Liberal that is contrary to what I know about Classical Liberalism. Telling someone that I am a classical liberal does not make me sound conservative, but liberal, regardless of definition. I wore myself out trying to explain our view of Hospice to every nurse, doctor, therapist, and aid. In the end, it was a battle that was killing my mom, and I could not accept the collateral damage. Sometimes it’s best to use language everyone understands.
On a happy note, Mom has made improvements that we were told she would never make. This is an answer to prayer. Getting simple treatments proved monumental and impossible at times. It was miraculous indeed that she was able to be treated at the level she needed. Also, she is now opening her mouth for food, chewing, and swallowing. She is moving both arms, one leg, and one foot reflexively (responding to tickling and uncomfortable stretches). She is answering yes/no questions, though not all the time. She also mouths things like “I love you” and “Goodbye” when we leave. The blood clot in her arm seems to have passed with no medications or treatment whatsoever. She makes facial expressions appropriate to the conversation. All miracles in my book. She’s not giving up, and God doesn’t seem ready for her.
If you are ever in need of Hospice Services, I would highly recommend Compassionate Care Hospice.