Hurry on over to hospice — don’t wait
Tuesday, September 03, 2019
When given a prognosis of likely less than six months to live, most people — once the shock subsides — seek cure. Some go to the ends of the earth in search of treatment; others spend every available dime to ensure they stay alive.
It doesn’t matter how old or ill, we humans are hardwired for survival. Making this decision is each person’s own prerogative.
As healthcare providers, though, it’s our duty to make sure we give folks choices. It’s our responsibility to be educated about hospice and palliative care and to become comfortable having this conversation with our clients — early on.
How many times have I had to teach that continuing to push food and fluids into a patient with failing organs is more harmful than helpful? In my mind, we can’t hurry on over to hospice soon enough.
Year after year, I’ve seen patients and their families wait to sign on to hospice until their very last days. Why? Sometimes it’s because they don’t know about hospice; yet, more often it’s because they fear the “H” word and all that it signifies. Death is just not a place people want to go — be they providers or patients.
It would be so much better, though, to quickly jump on board once you’ve gotten such news. Because, with hospice, we’re talking about relief of suffering and quality of life.
With a terminal illness, our days are precious and our time is short. Ask yourself perhaps the most important question, “How do I want to live?” While we may be dying, we are still living until we are dead.
Anyone can call hospice for information. To begin services, you do need a physician order stating that you have an illness with likely less than six months to live. Then, suddenly, you have an entire team at the ready specifically trained to care for you and your family’s comfort: doctors, nurse practitioners, nurses, social workers, chaplains, aides and volunteers.
Even other specialists (dietitians, speech, physical and occupational therapists) and homemakers may be available depending on your hospice and plan of care (POC). You and your family’s wishes are central to the POC and you all become part of the team. A bereavement program is also in place to support your loved ones after you die.
Hospice services can be provided anywhere at any time. Usually people are cared for at wherever they call “home” — that may be under a bridge if you are homeless. Hospice offers varying levels of care in accordance with the severity of the situation: routine, continuous, general inpatient and respite.
Depending on the hospice, it may also have its own inpatient care center, a children’s program, a pharmacy, palliative care, integrative medicine modalities such as acupuncture and essential oils, pet and art therapies and music thanatology. The large nonprofit hospice I worked at had all these services.
Often, you have a choice between using a nonprofit or for-profit hospice. Be mindful when choosing — your POC may be influenced by revenue goals. For example, at our nonprofit hospice, we were able to authorize blood transfusions for an artist patient so that she would have enough strength to fly back to her sound studio in Hawaii for one final recording session. It was part of her POC.
Again, at our nonprofit hospice, patients did not need to make “all or none” decisions immediately — we understood it takes time to transition from cure to comfort. While a “Do Not Resuscitate” (DNR) order must become part of the POC, it may take a few days to get there. Likewise with stopping chemotherapy. Chemo may still be indicated to shrink tumors that are pressing on organs.
Now, though, the intent is palliation of pain versus cure. Antibiotics also still may be used, for example, to alleviate the discomfort of a urinary tract infection, not specifically to treat it.
Medicare, Medicaid and insurance all cover hospice. So much is paid for: medicines, equipment, supplies, staff and more, depending on the plan of care and terminal diagnosis. Financially, it’s critical to start hospice sooner than later to take advantage of such savings.
Yet, people wait. In 2017, the median length of stay was only 18 days. Folks are missing out. Hospice doesn’t just end because you are still alive six months out as some patients are. As long as you continue to meet the eligibility criteria, you will continue to be recertified and receive hospice services.
I’ve had patients live for years after starting on hospice. Appropriate symptom relief, especially from pain, allows the body to rally and augments healing. When patients no longer meet the hospice eligibility criteria, they are discontinued from care. They can hop right back on as soon as they become eligible again, though.
In short, when dealing with a life-limiting illness, relief of suffering and enhanced quality of life is only a phone call away. Contact hospice ASAP. Healing happens.
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