Reaching Out to Families
LifeNet Health believes that a critical point of our service is to offer families time, attention, information and care. We do this by helping hospital staff answer clinical questions, discuss issues the family will face, share the family's concerns with their physicians and hospital staff, clarify the diagnosis (as appropriate) and, when we are certain the family is ready, offer them the opportunity to give ever greater meaning to their loved one's life through donation of organs and tissues to help save lives.
In some cases LifeNet Health can utilize Family Support Coordinators to begin supporting families of neurologically devastated patients at the time of injury or in the days surrounding the grave prognosis. At this time it is not the intention of early support to speak with families regarding organ donation but to do the right thing by providing emotional support, crisis counseling, and to work alongside hospital staff in helping sort through confusing clinical information.
The Approach Process
Formal steps that have been demonstrated to allow families to make informed choices include:
Physician informs the family of the death of their loved one
The concept of "brain death" is not an easy one to understand, especially for a family facing the sudden and overwhelming loss of a loved one. It is critical that the family understands "brain death" and have time to acknowledge the death of their loved one prior to approaching them with the opportunity to donate.
After explaining brain death and the tests that were used to confirm the diagnosis, the physician may use a bridging statement to introduce the LifeNet Health representative:
"Someone will be coming in to speak with you regarding some of the end-of-life decisions that you will need to make. He/she works closely with our hospital in assisting families in times like these. He/she can provide you with information and answer any questions you may have. If you need any more information from me, they know how to get in touch with me."
Discuss End-of-Life Decisions and the Opportunity to Donate
A collaborative approach by the LifeNet Health coordinator and the hospital health care team has the
highest probability of obtaining consent. LifeNet Health staff are specially trained to support and speak with families about the medical and personal issues of brain death and, of course, donation. Research has shown that families choose to donate more often when approached by OPO staff rather than hospital caregivers. Families and case research have identified that this variance is due to three reasons:
- OPO staff have more time to talk through the family's concerns;
- OPO staff can speak to specific information about the donation process; and
- OPOs have specially trained staff who can provide culturally sensitive support to families from our diverse communities.
A number of factors create a heightened need for sensitivity when approaching the family. Family dynamics, language barriers, cultural traditions and religious beliefs - not to mention the emotional nature of the situation - all contribute to a challenging environment for all involved. With their day-to-day experience and extensive training, LifeNet Health staff are well prepared to collaborate with hospital staff to approach the family with care and respect and to spend as much time with the family as necessary.
Support the Family Regardless of Their Decision to Donate
Families of potential donors are people in need. Many of them have never experienced the loss of a loved one. Whether a family consents to donation or not, LifeNet Health provides information that helps the family begin the recovery process. This includes a checklist of things to be done to prepare for the funeral, lists of mortuaries, grief resources and support groups, and information from the medical examimer, if appropriate. LifeNet Health also provides continued support to each donor family for 18 months after the loss of their loved one through our Donor Family Services Program.