” HOW DO I ASK?”
Requesting Tissue or Organ Donations From Bereaved Families
By Sheila Howard, RN, BSN
Brian was pale and out of breath as he ran into the private lounge where his parents and I were waiting for him. The grief on his parents’ faces told him what he least wanted to hear. I reached out to grab him as he fell into a nearby chair; his body shook with retching sobs.
No words were needed: Brian had just lost his bride of 4 months. A driver with a suspended license had run a red light, plowing into Claire’s car and killing her instantly. She was 25 years old. You could feel the pain and outrage in the room. WHY? WHY? WHY?
I had no answer. Who could?
As a transplant coordinator for a tissue bank, however, I did know of one possible thread of consolation. These tragedies are, in fact, the very basis of my job. If the patient meets the eligibility criteria, I approach the grieving family members, console them, and offer them the option of tissue or organ donation.
You might be taking on this responsibility, too: A federal law passed in 1986 requires hospitals to set up protocols to encourage donations for tissue or organ transplants. The hope is that form the devastating sorrow of people like Brian, some good may come for others.
How then, should you ask? How do you talk to families about donation when they’ve just had their lives turned upside down? And when? To do it immediately doesn’t seem right. Yet that’s when the donation is usually needed.
Though approaching a family about donation is never easy, two common barriers make it harder. Both our own anxiety and helplessness in dealing with the grieving family or a scanty knowledge of the donation process can stop us.
In-service education can bridge the information gap. But getting ourselves to feel more comfortable about asking is more difficult. My advice is to first acknowledge your feelings of inadequacy. Examining some of the fears, myths, and misconceptions that surround donation can also help.
One common myth is that asking for a donation as quickly as we must is insensitive to the family’s grief, even offensive, because most people don’t want to donate anyway. That simply isn’t true.
Nationwide, the concept of tissue or organ donation is overwhelmingly accepted. In recent Gallup polls, for instance, up to 85% of the people surveyed said they’d be willing to donate the tissues and organs of their loved ones.
If so, then why aren’t more donating? Well, acceptance of the concept apparently becomes more tentative when the reality hits home. People don’t dislike donation; they dislike thinking about their own mortality.
Another reason is that many families who might donate aren’t being offered the option at the time of loss.
If someone wanted to donate, you might ask, wouldn’t he carry a donor card? Not necessarily. Best estimates show that perhaps on 2% or 3% of the adult population care donor cards. Again, people are reluctant to plan for death, even though donor cards can ease the burden of the donation decision for their families.
Donor cards don’t lift that burden entirely, however; the family still must approve the donation. Although donor cards are legal in all 50 states, ;most hospitals also obtain consent from the legal next of kin. Enforcing the legality of the donor card over the family members’ objections would only intensify their grief, so their right to refuse is typically respected.
As you approach the family, the, remember that most people are willing to at least consider donation. Their right to refuse ensures that you won’t in any way override their feelings.
Talking to the family
Before you discuss donation with the family members, be sure, of course, that they’ve been informed of the death and that the patient is an appropriate candidate.
Your next step is to assess whether the family members are calm enough to discuss donation. Have they truly accepted the death or, in the case of brain death, do they understand that their loved one is dead – and that the ventilation support is to maintain the vital organs only?
One of the public’s misconceptions, by the way, is that a potential donor’s care will have been compromised for the sake of the donation. Your thorough explanation of the donation process can reassure the family members on this point; you might also let them know that the patient’s doctor is in no way involved with the tissue or organ procurement.
Then, try to find out whether the patient had a donor card or whether anyone in the family has mentioned donation. Knowing that before hand can help the discussion go more smoothly.
To properly ask for consent, you’ll need to identify the legal next of kin and his relationship to the patient. This is usually the spouse; if there’s no spouse, an adult son or daughter (over age 18); if there are no adult children, either parent of the patient; and son on. But bear in mind that usually one family member or close friend – not necessarily the legal next of kin- is the main support person and decision maker. Failure to include this person in the consent process may spell failure to get the family’s permission.
As you talk to the family members about donation, remember first of all why you’re there: to comfort, help, and support them – and to offer them and option that’s now available through your hospital.
If they do react with tears or screams of protest, try not to take it personally. This, too, could be part of their grieving, and not necessarily a rejection of your request or even a sign that they think of it as an “intrusion.”
Perhaps the best way to demonstrate how donation can help console bereaved families is to tell you how I approached Brian, the young man whose wife was killed in a car accident.
As Brian moved his hands away from his face, he softly moaned, “Claire, Claire,” I placed my hand on his shoulder and stooped down so he could see me clearly. “Brian, my name is Sheila Howard. I’m the transplant coordinator here. I’m so sorry about Claire…. Can I do anything for you? Would you like something to drink – coffee? A soda? Water?
Maintaining eye contact with Brian (without invading his space) helped clam him. Besides trying to give him something to focus on. I wanted him to know that I cared. Even the few minutes I spent getting Brian and his family sodas helped them regain some control of their emotions. They could then start thinking about the necessary calls and arrangements.
You may not always be sure of the exact moment to ask for the donation. Just remember, your first priority is to care for the family members during their bereavement. And the option you’re offering can give them some comfort.
“Brian, would you like me to call someone for you? Can I answer any questions for you?” His eyes, flooded with tears, never left mine. I added, “Would you like to talk about Claire?”
Yes, he would: “How did this happen?” “Where?” And then, the hardest question: “Did she suffer?”
These questions are universal. Sometimes simply letting the family members talk about their loved one will open the door for more communication. The family needs to know who, why, how, could the death have been prevented? As part of their normal grieving, later, they’ll probably want to review the death to see if they could have done anything to prevent it.
Most likely, despite your assurances that there was nothing they could have done, they’ll feel anger, guilt, and sadness. Yet the answers you give them now can help they resolve some of these feelings afterward.
I answered Brian’s questions as truthfully and completely as I could, avoiding clichés such as, “It must have been God’s will,” “There must be a reason,” or ” at least she didn’t suffer.” When I was sure I’d answered all his questions about the accident, I explained my role.
“Brian, losing Claire must be terrible for you. I’m very sorry: I’d like to be able to help. When facing a tragedy like this, many people get a lot of comfort from donating tissue or organs. Our hospital can provide this option for you. Did you know that Claire carried a donor care?”
He nodded. “Yes – anything you can use. Claire and I talked about this once. It’s what we both wanted.”
What if Claire hadn’t carried a donor card? Knowing that the concept of donation is widely accepted, I would have gone on to ask Brian if he’d like to consider the option. He probably wouldn’t have thought about it unless someone mentioned it to him.
I’d never start the discussion by asking if the patient carried a donor card. In most cases, the reply would be no, and I wouldn’t want to have the door closed on the subject before I could start.
Although Brian had given a resounding yes, I couldn’t simply get his signed consent and leave. I had to give him the specific information he needed, such as which organs or tissues could be donated, which blood tests would be needed beforehand, when and how the surgery would be done and who would perform it, how long it would take, what effect the donation process would have on Claire’s body and on the funeral arrangements, and what costs would be involved and who would pay them. (The costs of evaluating donor eligibility and the entire donation process are covered by the procurement agency involved.)
I also explained the potential benefits of transplantation. Success wasn’t guaranteed, I told him, but important research would progress even if an organ or tissue proved unacceptable for transplantation.
Most important, I made sure Brian realized that he had the right to refuse donation and that his decision wouldn’t be held against him in any way.
Only after I’d finished this explanation did I ask Brian to sign the consent form.
As I stood up to leave, I said, “Brian, I know this is hard for you, but many families say it helps to receive some information later about their donation. Would you like to know how many people Claire was able to help? I can’t tell you their names, of course, but I’ll be able to tell you how she helped them.” He smiled slightly.
“Yes, I’d like to know. Yes. It’s a way for Claire to live on, isn’t it?”
The Who, What, and How of Donation
A recently deceased person can donate either tissue or organs, sometimes both. The two types of donation have important differences.
Organ donation includes vital organs such as the heart, lungs, liver, kidneys, and pancreas. These organs can be donated only by those who have suffered braindeath and whose vital functions have been maintained by a life-support system. The age limit for donating vital organs is 60 or under – for heart donations, much younger.
Once brain-death has been documented and the family’s consent for donation obtained, the patient is usually placed on ventilator support to ensure maximum viability of the organs until the actual procurement occurs. Vital organs must be transplanted relatively quickly after being removed from the donor: heart and lung, within 2 hours; heart, within 3 to 4 hours; liver, within 8 to 12 hours; pancreas, within 24 hours; and kidney, within 72 hours.
Tissue donation includes the long bones of the arms and legs, the iliac crests, vertebrae, ribs, facial lata, dura mater, arteries, veins, heart valves, cartilage and ligaments, skin, and corneas.
Tissue donation can be accepted up to 24 hours after the cessation of circulation. Because the patient needn’t have been sustained on a life-support system and the maximum age limits aren’t as strict, more deceased patients can donate tissue than organs.
Every year in the United States, more than 500,000 operations require bone products for transplantation. Bone is perhaps the most versatile tissue transplanted because it can be cut and shaped as needed.
Some common uses of bone? Reinforcement for areas where bone tumors and cysts have been removed, spinal fusions, and reconstructive surgery. Advantages to the recipient include faster healing, shorter hospital stays, reduced costs, and less discomfort.
In bone and soft tissue donation, a surgical team removes the tissue, which is then sent to a tissue bank to be either freeze-dried or fresh frozen. The tissue may be stored up to 5 years for later transplantation.
According to law, the
priority order for
1. the spouse
2. an adult son or daughter
3. either parent
4. an adult brother or sister
5. a guardian at the time of death
6. any other person authorized
obligation to dispose of the body.
Howard S. “How do I ask?” Requesting tissue or organ donations from bereaved families. Nursing. 1989 Jan;19(1):70-3. PubMed PMID: 2909935.
– See more at: http://www.cowpasturechronicles. wordpress.com/p/how-do-i-ask.html#sthash.LrMQDihf.dpuf