Terry Dionisio is living with end-stage kidney cancer. She is a patient of Pikes Peak Hospice & Palliative Care (PPHPC) in Colorado Springs.
One of Dionisio’s final wishes is to become an eye tissue donor and hopefully be able to help restore someone’s vision, so they can live a fulfilling life. A donation program with the Rocky Mountain Lions Eye Bank at PPHPC will grant her, and many more like her, the wish to give the gift of sight.
Based on a medical screening, Dionisio is eligible to donate her eye tissue and has made herself a donor through the Colorado Donor Registry. Though she has been registered to donate for some time, the donation program has given her another opportunity to share her wish with her husband, Joe, and their family. John Bauer, Director of Chaplains and Counselors at PPHPC, initiated the conversation of donation with the Dionisio family when they were ready.
"I think John made the opportunity [to donate] very clear and understandable, and we were all on board together very quickly. It wasn’t a long discussion at all," said Dionisio.
The PPHPC donation program also cleared up a misconception for Dionisio that is common for many patients: that although she is ill, her particular condition will not prevent her from donating.
"I had assumed that I would not be a donor because of my cancer, and I didn’t even know that eye tissue donation was an option," said Dionisio. "And I think, for me, to lose sight would be one of the cruelest, most frightening things that can happen in your life…not to be able to see or read. So if someone can continue to do those types of activities, I would love to be a part of that."
The nature of hospice care enables the opportunity for a patient to openly discuss with their family whether or not they wish to donate. Patients who enter a hospice are terminally ill and are provided with care that addresses their physical, emotional and spiritual needs. Because patients are encouraged to take an active part in their advance care plans, the hospice staff has found it appropriate to facilitate an open discussion of donation with a patient’s family while the patient is still living. Ideally, an eligible patient is able to clearly express his or her wishes regarding donation.
"This is definitely unique for us. To talk about the donation before I die is an incredible experience," Dionisio said. "It’s part of the whole package of trying to make the gift of dying this way even more positive."
Darlene Avery, Assistant Director of Chaplains and Counselors at PPHPC, is an administrator of the eye tissue donation program. She can attest to the benefits that families have experienced by discussing donation with their loved one.
"I’ve found that the conversation takes the burden off the family of wondering what the patient wants," said Avery.
Unfortunately, when deaths occur unexpectedly in hospitals, families may unknowingly learn that their loved one was registered as an eye, organ and tissue donor, or, if not registered, they’re left to wonder if their loved one would have wanted to give the gift of donation. The hospice donation program helps eliminate these issues when possible.
The hospice donation program also differs from hospital donation programs in a couple of other ways. First, patients are screened by hospice staff upon admission for eligibility to donate eye tissue. This differs from hospital donation programs where donation eligibility screening is done at the time of a patient’s death, as mandated by federal law. Second, hospices have no federal obligation to facilitate donation. Hospices like PPHPC participate because it empowers patients and families.
"We learned that there are a lot of people for whom this is part of their legacy plan, and they were surprised to find that if an agency actually doesn’t check the Registry, make the connection, and at the time of death call, their wish may not be honored," said Avery. "And there’s a whole other group of patients who thought because they are hospice patients, that no one would want any [of their tissues], and we’re thrilled to find out that they can still make a difference even though they’re ill."
If eligible to donate based on a medical screening, the staff will place a phone call to determine if the patient is a registered donor or not. At the appropriate time, a chaplain or counselor will have a conversation with the patient and their family about donation. At the time of the patient’s death, the staff will make another phone call to coordinate the donation process with the eye bank.
Avery said that the donation program has been fully embraced by both patients and hospice staff. Patients want to have their wishes fulfilled, and the staff members want to help make this happen.
Bauer has also seen a positive reaction to the option of eye donation among patients and staff. He said that the concept of donation has really resonated throughout the hospice and that patients who embrace donation see it as a gift of themselves to someone else. "It’s giving back, I think, in one of the most unique ways that a human being can. That kind of hit home here," said Bauer. "You’re literally giving something of yourself, your own tissue of your own body."
At its core, the donation program is all about giving eligible donors the opportunity to express, and hopefully fulfill, a wish to help someone else as their final act in this world. These expressions of the wish to donate, and even to not donate, have taught the hospice staff more than they could have imagined about their patients’ values and communication within families, according to Avery.
Each patient who expresses a wish to donate their eye tissue will become a part of the circle of light, regardless of the final outcome of their donation. This wish is the gift, and it has the power to change the world for someone else.
Editor's note: Terry died on October 27, 2008; and both of her corneas were recovered for transplantation.