No one looks forward to having "the talk," whether the uncomfortable topic is plans for older parents, wishes about end-of-life care or even one that can save lives — organ donation.
"And nobody likes to have that discussion; it's an awful discussion to have," said Tina Ray of Terryville, who is thankful she had brought the subject up with her son Nick Smith just before his 21st birthday a decade ago when he bought a motorcycle. "In my case, it was more of a joking kind of discussion with my oldest son, but nonetheless we still had it."
The talk could not have been more timely. Three days later, Smith was in a motor vehicle accident and was declared brain-dead at Hartford Hospital.
Because Ray knew her son's wishes, she was able to authorize the donation of his heart, one kidney and his liver, and that helped a bit with the pain of her loss. "These people would have not survived if they had not had their transplants," she says.
The year that Ray donated her son's organs to save others, 2004, was the year that live donations peaked nationally. According to United Network for Organ Sharing (UNOS) records, live donors began to increase rapidly in 1990 and continued to increase up to 2004.
However, in the past 10 years, the numbers have plateaued at the same time that need has grown. Medical professionals are concerned that some people might fear that doctors or first responders will not do all they can once they are aware that the patient is a donor.
Dr. Patricia Sheiner, director of transplant services at Hartford Hospital, said that's just not true. "I'd love to take away that fear," she says. "People are not going to be identified as donors until everything possible is done to save that person."
Hartford Hospital, the organ transplant center that harvested Nick Smith's organs, sees about 50 kidney transplants, 15 liver transplants and 15 heart transplants each year.
"The volume is stable," says Sheiner. "We're slowly increasing, but we're increasing our wait list as well."
As the gap widens between those willing to donate and those in need, many groups are trying to raise awareness of the problem.
"Part of it may be that we have an older population who might not be good candidates," Sheiner said. "There's diabetes and hypertension, and other issues that make people not good donors. I can't say exactly why [live donations have decreased]."
With more than 120,000 patients nationwide awaiting transplants and, on average, just over 14,000 donations, the need greatly exceeds the available organs. According to Donate Life New England, about 5,000 of the people in need of transplants live in the New England region. "Every 12 minutes another name is added to the national waiting list, and each day 18 people die while they wait for their transplant," according to http://www.donatelifenewengland.org.
Through Life Choice Donor Services in Windsor, Ray and her husband, Don Ray, are still in contact with those who benefited from the organ donations. They even set aside one night a year for dinner with Nick's heart recipient and his family. While the donations helped ease the pain, she remained fearful every time her younger son, Michael, left the house.
"I wanted to wrap him in bubble wrap, stick him in a closet, and wait until he was 35 years old to release him," she says with a chuckle. Still, eventually she loosened the reins. Michael married and settled into life with his wife, young daughter and stepdaughter.
Then, in 2010, just six short years after Nick's accident, tragedy struck the family again. Michael, then just 23, was hospitalized for a medication-induced brain injury. He died at St. Francis Hospital in Hartford.
"I didn't know how I was going to survive the first five minutes, let alone five years," she says. "It still seems so improbable. It feels like it's not my life."
Once again, she sought the temporary distraction of finding recipients for her son's organs eventually donating his heart, liver, kidneys and pancreas.
Though the Rays don't see the recipients as extended family, they understand the impact they made by facilitating the donation process. "We just helped them to continue their family," she says. "I think that [Nick and Michael's] purpose was to be able to provide a heart or a kidney, and I was just the person who was able to make that happen."
Organ transplants are often crucial to those with chronic illnesses including diabetes, high blood pressure, heart disease and kidney disease. "Transplantation is an important part of really being able to take care of patients from beginning to end," Sheiner says. "Being able to offer organ transplants is one of the standards of care [at Hartford Hospital]."
The growing list of those in need and the inconsistent availability of donors means that while some lives are saved, even more are lost. "We see the other side," Sheiner said. "We see the patients who die, who are taken off the list because they've waited too long and are too sick to get a transplant."