By James L. Robinson
Advance care planning is now recognized as the single most effective tool for improving care at the end of life, but it is only effective as a full and complete process. Simply completing a few documents and assuming that health systems will honor your wishes is not realistic. That complete process includes having meaningful conversations with your family, completing advance care planning documents, keeping those documents accessible, and sharing them with family and physicians.
Organ donation is an often-neglected aspect of advance care planning, but it shouldn’t be. Most discussions about advance care planning focus on completing three primary documents: the Medical Power of Attorney, the Directive to Physicians and Family or Surrogates (Living Will), and the Out-of-Hospital Do-Not-Resuscitate Order. Each state has legislation outlining the specific language and purpose of these documents, which can be found at nhpco.org. In my consultations with patients in the clinic about organ donation, I refer them to donatelifetexas.org, the Texas registry for Donate Life America, the official national organ donor registry.
A red heart on the Texas driver’s license indicates that the person is an organ donor. In my discussions with patients, I also bring up the Medical ID app on smartphones. That app, which is included on all Apple iPhones, and can be downloaded for Android devices (“Medical ID (Free)/In Case of Emergency”), provides an opportunity to register with the Donate Life America registry, and that information is visible on the Medical ID app template when completed. CHRISTUS Physician Group recommends completion of the Medical ID app template, which allows medical first responders to view the owner’s medical profile without logging into the phone.
Check the language and laws on Living Wills in your state to become familiar with the organ donation process. California, for example, recently amended the state’s advance directive law, clarifying the rights of patients regarding organ donation.
The chaplain having “the conversation” in the hospital setting actually has the benefit of time. Unless the setting is critical, the ICU for example, there is usually time to explore the patient’s priorities, what gives their lives meaning and purpose. This is the ideal moment to discuss organ donation. Even a conversation with a patient in hospital pre-admitting, focusing on advance care planning documents, can include a mention of organ donation. The chaplain can emphasize two points. First, completing advance care planning can ensure your end-of-life wishes, and second, taking one more stressful decision away from the family is a loving thing to do for them.
My discussions with patients in the physician’s clinic include a specific mention of organ donation. Like all advance care planning, the purpose is to ensure that your wishes are honored at the end of life. Ellen Goodman of the Conversation Project shares that we have two fears at the end of life: that we receive the care that we want, and that we don’t receive the care that we don’t want. I would add a third: that we don’t burden our families with decisions that they might not be prepared to make. By making the organ donor decision, and making those wishes known, a patient can spare family members additional stress in an otherwise naturally stressful moment. The prospect of organ donation decisions, particularly in a sudden, unexpected death, can seem an intrusion at a time of grief.
Henri Nouwen, in his book Befriending Death, wrote that our deaths can become an act of fulfillment and a fruitful gift to those we love. “I have a deep sense, hard to articulate, that if we could really befriend death we would be free people. So many of our doubts and hesitations, ambivalences and insecurities are bound up with our deep-seated fear of death that our lives would be significantly different if we could relate to death as a familiar guest instead of as a threatening stranger.” Similarly, Archbishop Gustavo Garcia-Siller, MsPS, of San Antonio, in an advance care planning video on the CHRISTUS websites, states that advance care planning is “one of the most loving things you can do for yourself and your family.”
James L. Robinson is advance care planning coordinator at CHRISTUS Physician Group in San Antonio, TX.