SCARBOROUGH — What comes to mind when you hear the word “hospice”? Is it fear, uncertainty, last resort, pain, your family?

Most people who have had experience with hospice have a positive perception of hospice care. It’s quite common for families to remark, “I don’t know how we could have made it through those last days without the help from hospice.”

But for others, who are unfamiliar with hospice, fears and misconceptions about what hospice is and what the service provides often prevents people from utilizing care at a time in their lives when they need it the most.

November is National Hospice and Palliative Care Month. It is the perfect time for Hospice of Southern Maine to educate our community and eliminate the misconceptions that often surround hospice care. Research shows that as many as 80 percent of patients would like to discuss end-of-life care with their doctors, yet fewer than 10 percent have actually had that conversation.

One of the most common misconceptions is that hospice care is sad and depressing for patients and loved ones. On the contrary, hospice care helps patients live a life that is as enjoyable as possible while controlling pain and managing symptoms.

Hospice deploys nurses, doctors, chaplains and social workers to help people with a fatal illness have the fullest possible lives right now. Patients stay comfortable and alert so they can spend quality time with their loved ones doing the things that add richness to their lives. That may include laughing, traveling, listening to music, riding a motorcycle, going to dinner and a movie, and even a fishing trip with a grandchild.

People unfamiliar with hospice have a perception that agreeing to hospice care is “giving up hope.” However, people who opt for our services have the opportunity to decide how and where they want to spend their final days.

They find hope in the fact that they can stay in their own homes longer, be surrounded by loved ones, be as active as possible and have their symptoms under control. As part of the commitment to relieving symptoms and pain caused by the illness, medications and certain palliative treatments will be provided.

Patients and their families and loved ones often remark, “I wish we knew about hospice sooner.” A common misconception is that people who are admitted for hospice care die sooner than those who continue treatment.

In his book “Being Mortal: Medicine and What Matters in the End,” Atul Gawande, M.D., refers to a landmark 2010 study from Massachusetts General Hospital that found that patients with terminal lung cancer who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and lived 25 percent longer than their peers who didn’t get palliative care.

Hospice provides excellent team-based medical care – it does not mean going without treatment. Hospice and palliative care patients continue to receive high-quality care from an entire team of specialized providers, including doctors, nurses, social workers, chaplains, aides, bereavement counselors and volunteers. Hospice care is performed with skill, compassion and concern.

“I can’t afford hospice care.” The truth is that hospice care is covered under Medicare/Medicaid and most private insurance companies. The coverage includes most medications, medical equipment and bereavement services. And as a nonprofit agency, Hospice of Southern Maine will never turn away someone in need, even if patients do not have insurance.

Last year, Hospice of Southern Maine served over 1,400 patients in York and Cumberland counties. Medicare data in 2013 shows us that approximately 2,800 individuals in these two counties were likely “hospice appropriate.”

Of those, about 2,000 received hospice care, many from Hospice of Southern Maine. The rest, who would qualify for and benefit from hospice care, received no end-of-life care at all. We need to educate members of our community and empower them to be advocates for themselves and their family members and friends.

Remember, calling hospice doesn’t mean that you’re giving up – it means that you’re taking charge.

 

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