Lesson learned: Families wish they chose hospice care sooner

"We wish we had known about hospice sooner."

Lydia Moore agrees.

"I wish my mother would have gotten hospice care much sooner than she did," said Moore, whose mother received hospice care for 14 days before she passed away. "Mom was ill for quite a while. I know now that with hospice care, she would have been more comfortable for a longer period of time. I tell friends not to wait too long to call in hospice."

The Moore family is not alone in putting off hospice care. Statistics show people generally don't engage with a hospice program nearly as early as they could.

Those lengths of service are merely a fraction of the 180 days of hospice care Medicare allows with its coverage.

"Not getting their loved one enrolled in hospice care sooner is really the only consistent regret we hear from families when they're evaluating their experience," said Deb Norcross, RN, CHPN, director of hospice and home health for Transitions LifeCare.

"Until families see first-hand how big a difference hospice care can make in keeping their loved one comfortable and enjoying the best quality of life possible, they don't understand all the advantages we can provide," Norcross said. "Unfortunately, most people associate hospice only with dying -- instead of living more fully during the time that remains -- and avoid engaging with a hospice program as early as they should."

In addition to misperceptions about what hospice can do, the criteria for receiving hospice care can create obstacles -- emotional and otherwise -- for patients and their families, according to Norcross.

“To be eligible for hospice, the rules of Medicare and most health insurance providers say that doctors must predict a patient has six months or less left to live. Plus, the patient has to agree to give up curative treatments,” Norcross said.

Often, patients aren't willing to forgo the possibility of a treatment working. And even if the patient is ready to move from curative care to comfort care, their family may influence them not to "give up."

About two-thirds of patients are willing to undergo therapies they don't want if that is what their loved ones want, according to Dr. Susan Block, chief of psychosocial oncology and palliative care at Dana-Farber Cancer Institute.

Furthermore, with continuing advances in medical science, accurately predicting life expectancy can be a challenge even for the most skilled physicians.

The longer the relationship with the patient, the higher the overestimation became.

If families or physicians aren’t sure whether hospice care is appropriate, it doesn't hurt to get an assessment from a hospice provider, Norcross advised.

"One of the biggest misperceptions," Norcross said, "is that hospice care becomes the last resort when 'nothing else can be done.' Hospice care doesn’t mean that treatment stops. It means the types of treatment and goals of care change to things like managing pain and other symptoms while helping patients reach their goals in the time that's left."

Families shouldn't hesitate to contact a hospice provider to discuss their loved one's condition, challenges of living with an illness, and the benefits hospice can provide, according to Norcross. "It's better to get a professional assessment early and begin care as soon as appropriate rather than waiting and regretting hospice care was started too late," she said.