This is a slightly edited version of a column of mine in the SC Baptist Courier, however there was no online version and associated link to share with you. Here is the full text.
Recently, I encouraged a dear great aunt to go into a hospice program. She is childless, and like so many seniors she lives alone, is adamant that she wants to do so, and has private caregivers who come to help. Her will is strong, her mind sharp but her body is frail. She has been afflicted by injuries and subsequent chronic pain. Simple activities like moving around a room are remarkably hard for her. She was hesitant at first. A lot of people are. The word ‘hospice’ carries enormous gravity.
So what does it mean to be on hospice? For those unfamiliar, it’s helpful to know that this doesn’t mean that patients stop receiving medical care. It simply means that a patient’s medical condition makes it likely (not certain) that they will die within six months of initiating hospice care. While in hospice, medical care is focused more on patient comfort and on their enjoyment of life rather than on attempts to defeat their ongoing medical conditions.
Hospice also means that physicians, nurses and social workers are available to help make the end of life a little gentler, a little kinder, for patient and loved ones alike. Hospice workers can provide many resources for patients in their care, including counseling. For those on limited incomes, hospice can pay for necessary medications, medical supplies like briefs or bandages and can even offer in home visits from hospice workers on a regular basis and as needed.
Hospice doesn’t require that a person leave their home and go somewhere else. However, that can be an option when patients, or their families, need what’s called a ‘respite,’ that is a break due to difficult circumstances or physical symptoms. (Or when they are about to pass from this life and family or patient prefer for that not to happen at home for various reasons.) Physicians who work in hospice can even admit patients to the hospital for ‘symptom control’ as their disease processes worsen.
Patients on hospice are not subjected to assisted suicide. Furthermore, a person on hospice can actually revoke their status at any time and can go off of hospice; then they can come back to the program as needed. Those who work for hospice companies are experts at explaining the ins, and outs, of the various programs that exist.
Finally, there are patients who actually ‘graduate’ from hospice and return to better health and function. Which is to say that ‘hospice’ doesn’t necessarily mean that patients will die. The plain truth is that physicians like myself are not that great at predicting how long someone will live with a given condition. Likewise, sometimes patients are in hospice programs because the severity of their condition makes death more likely, but not inevitable.
My great aunt is 94-years-old. She has lived independently for almost her entire life, and has always been elegant and in charge. To this day she manages her own money. And she insists on a bit of makeup when she goes out.
There’s no reason that her life, so full of joy and agency, needs to be lived at the end in unmitigated struggle and pain. And with her fears about hospice allayed by her hospice nurse, she can continue to live her best life until her end.
That’s a gift for sure.
Edwin
PS The word ‘hospitalist’ denotes a physician who works full-time in a hospital doing admissions and inpatient management. This is the trend for most inpatient care these days. However, ‘hospitalist’ sounds remarkably like ‘hospice,’ and I have had to clear that up on several occasions.
‘It appears that you have a serious pneumonia. I’m calling the hospitalist.’
‘What? You’re calling hospice?’
‘Uh, no. Allow me to explain…’
Well written. A childhood friend’s mother passed this week and had been in hospice care in my friend’s home. My friend described the hospice staff as “light itself” in helping care for her mother. I know I was quite appreciative of the care my own mother a few years ago even though she said it was “a hard pill to swallow” to be told she was in need of hospice care. I could never convince her that it didn’t mean she wouldn’t get taken care of, she insisted we were “pulling the plug “ in her more lucid moments. (She had severe dementia and a litany of medical issues...) Those folks who work in that field are called indeed.
As a physician board-certified in EM in and Hospice and Palliative Medicine, I want to thank you for using your platform to highlight this incredible, essential, and grossly misunderstood and underutilized medical benefit. Your comments are right on the money and properly contextualize hospice care. Unfortunately, far too many people wait too long (and suffer unnecessarily) to avail themselves of all the services hospice can provide. Bravo, Ed!