Today’s blog
Lynn Murphy Mark
Choices
Yesterday I spoke to a friend about Hospice services. That’s something I did for a living, and a calling, for 15 years of my nursing career. It was my job to respond to a hospice referral by spending as much time as it took to explain the benefits of hospice to patients and their family/caregivers. Often I would be meeting with people who were trying to understand the difficult news of having met the end of their active treatment. I knew that when I entered the room I would be met with the raw grief that goes with this medical version of catastrophic news. My encounters included sessions with people who were angry, or profoundly sad, or not ready to accept the news, or quietly resigned to the inevitable.
What made it a calling, much more than a job, was the opportunity to open the door to such difficult conversations and introduce the plethora of services available through hospice. This didn’t change the outcome, but it did provide hope that the road ahead would be made as comfortable as possible. Seeing the relief on people’s faces as they listened and learned that they need not be alone, that hospice people are on call 24/7, that the services are usually covered 100%, and that the emphasis will always be on maintaining quality of life, was my reward.
I worked with people who were experiencing unimaginable stress. They had just gotten the worst news possible and were facing the great unknown in most cases. Many times people were digesting the words, “There’s no more we can do for you.” My response to that was to say that there is always more to be done. The change from aggressive treatment to treatment focused on maximizing comfort and support was my approach to all the conversations. Palliative care is a choice that should be available to all people.
There were people who were not ready to accept what they had been told. They sometimes looked at joining hospice as a death sentence. I suppose that is a logical conclusion, given that hospice patients are absorbing the news that their illness is now considered terminal. My job then was to support their choice of refusing hospice at the time, and assure them that it would be available if their thinking changed.
Hospice is a home care service, meaning that home is wherever the patient lives. It is provided in private homes, in nursing homes, and in hospice houses. The level of benefit stays the same regardless of the setting. In someone’s home our job is to provide equipment, supplies, and medicine and visits from a whole team of professionals to make home care comfortable and convenient for patients and caregivers. For people who are in, or going to, a nursing home we are an extra layer of caregiving. Sometimes the best place is an actual inpatient hospice house, where the goal is to maximize comfort in a 24 hour home-like setting. There are two hospice houses in the St. Louis area, and they represent the best of palliative care places. I know because I spent four of my years working in one of them.
So, when it seems that aggressive treatments are no longer an option, the truth is that Palliative Care is filled with choices. Within that universe is a program that supports decisions about where, when, and how to access comfort care. Comfort care, or palliative care, is both an art and a science. I am blessed to have worked on this “holy ground”.