When the Gladden family of Burlington County received the news that not one, but all three of their teenage daughters were diagnosed with lupus they feared the inevitable — their lives would be cut short and they’d need to call the shots of what their final days would look like.
“They’ve been in the health care system for so long, that a comfortable day, was really, really, really important,” said Darryl Gladden.
Darryl and Andrea Gladden had to do the unthinkable — talk to their children about their dying wishes. With their daughter Daphne still alive and fighting the disease, they spread their message at forums like the one held Tuesday at the Samaritan Healthcare & Hospice in Voorhees.
“Danielle had no palliative care, no hospice care. Life was difficult for us because we were her only help,” Andrea said.
“End-of-life care directives say what is important to you in life. Not only at the end of life, but it starts out with what is important to you, what makes your life full and rich,” said Mary Ann Boccolini, president and CEO of Samaritan Healthcare & Hospice.
There’s been an increased emphasis on end-of-life care in recent years as studies show New Jersey’s senior population is slated to grow 60 percent by 2030. A new report released by the Governor’s Advisory Council recommends increasing awareness and education around palliative, hospice care and end-of-life care directives.
“At the moment we only have a little less than a third of our residents having that type of conversation when they’re in end-of-life, when they have a life-limiting illness. We’d like to see that number grow,” said Cathleen Bennett, president & CEO of the New Jersey Hospital Association.
A package of bills on palliative and advance care planning has languished in the Legislature. The governor’s advisory council wants health care providers and experts to better plan and communicate difficult issues with families when treatment no longer works. Making decisions before, not during, a health crisis.
“You want to have all the curative option exercise, and that’s not what this conversation today is about. We’re not saying not to take the curative steps. We’re actually saying the opposite, we’re saying do all you can from a curative perspective,” Bennett said. “But when those options have been expired, make sure that you have the conversation about palliative, make sure you have the conversation about hospice care.”
Advocates hope to normalize this conversation to ensure a great life and a good death.