" HOW DO I ASK?"
Requesting Tissue or Organ Donations From Bereaved Families
By Sheila Howard, RN, BSN
Nursing'89
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.
Overwhelmingly accepted
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.
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
consulting
next-of-kin is:
1. the spouse
2. an adult son or
daughter
3. either parent
4. an adult brother or
sister
time of death
6. any other person
authorized or under
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.