Amy Colver, LCSW
Melody Griffith, MSW, LMSW, OSW-C
AOSW Communications Director
Jeanice Hansen, LCSW, OSW-C
To submit a story or information for inclusion in a future issue of AOSW Newsletter, contact Amy Colver or Melody Griffith on the list above.
Ethics SIG: Beyond Advance Directives – Advance Care Planning
Almost 25 years ago, Nancy Cruzan died following a lengthy and very public court battle, amid national media attention, at a time when her family wished only for peace and privacy. Nancy’s sister, Chris Cruzan White, died of ovarian cancer this past August, in the embrace of her family, and with only the attention of her large circle of friends and close acquaintances. Chris’s last months and her final days were lived out through many conscious choices about who and what was important to her, and how she wanted to spend her time. Until the end, she cherished life and made memories with her family, posting selfies with the loves of her life on Facebook, and making a final visit to the graves of Nancy and her parents, Joe and Joyce Cruzan, just weeks before being laid to rest there herself.
Chris Cruzan White was a tireless advocate for the rights of patients to direct their own care at the end-of-life. In the years after Nancy Cruzan’s death, she spoke on occasions too numerous to recount in support of the Patient Self-Determination Act (PSDA). She repeatedly told the Cruzan family’s story in the hope that others could avoid the same grievous journey of court involvement, state interference, and attention by national media and special interest groups.
The Cruzan family members often described themselves as “an ordinary family.” They were indeed an ordinary family, thrust by a perfect storm of circumstances into an extraordinary situation. A Midwest, blue-collar family, they were compelled to work through their circumstances and not accept what, to them, was an unacceptable injustice. The interested reader is encouraged to read Long Goodbye: The Deaths of Nancy Cruzan, an account written by the Cruzan family’s attorney, William H. “Bill” Colby. The Cruzans found legislative support for what ultimately was passed as the Patient Self-Determination Act (PSDA). However, almost 25 years later, the law alone has not ensured patient preferences. Why?
Social workers in hospitals, cancer centers and palliative care teams, together with other disciplines, have recognized that documents alone are insufficient to preserve the autonomy of patients. In recent years, there has been a growing acknowledgment that conversations play an even more important role in first, knowing, and later, honoring patient preferences. Early conversations, conducted at times not marked by impending crisis, together with careful selection of surrogate decision-makers, documentation of goals, values, and preferences, and periodic review of preferences in light of new medical information, have been associated with fewer conflicts about end-of-life decisions. The story of Gundersen Health Respecting Choices in LaCrosse, WI, is an excellent example of how one healthcare system transformed a process from merely completing documents to a meaningful, multi-tiered approach to advance care planning. Their approach has become a national model.
The Cruzan family had nothing in writing from Nancy to express her wishes in the event of a life-threatening injury. This is not surprising as Nancy was a healthy 25-year-old at the time of her accident, and in the mid-1980s it was still new for patients to have Living Wills or other documents stating their preferences. It was the testimony of those who recalled conversations with Nancy that ultimately persuaded the court to permit the removal of her feeding tube. No doubt that many of us, as social workers, in the absence of a document, have inquired of families, “Did your mother ever talk with you about a situation like this?” “Has your husband ever mentioned his wishes about life support?” “What do you understand about your loved one’s spiritual beliefs or values?”
Now it appears that Advance Care Planning as a standard practice will soon be a reality. Whether Licensed Clinical Social Workers will receive reimbursement for this patient care remains to be seen, but the good news for patients is that steps are being taken to address long-standing inadequacies around advance directives. The federal mandate of the PSDA does nothing to ensure the quality or depth of the conversation about patient goals, values and preferences, nor even that a conversation takes place. It does not ensure the participation of the physicians who know the patient’s medical condition, nor that decisions about care are grounded in good medical information. Patients often fill in the blanks of a Durable Power of Attorney with little consideration about who is the best person to carry out their wishes and how to include that person in conversations.
As I reflect on the Cruzan family’s experience, and the final months of Chris Cruzan White’s life, it occurs to me that Chris had the benefit of advance care planning—but only because she pursued it for herself and her family. She had numerous conversations with her husband and children and her doctors, over time, about her goals, values, and preferences. The conversations were revisited as her disease progressed. Few people have had a profound life experience that heightens their awareness around this issue. For most laypersons there continue to be barriers to an adequate advance care planning process. As social workers, we can advocate for advance care planning that occurs as a process, rather than an event; a process that occurs in the context of sound information and continuity of care, rather than in a time of crisis, in fragmented encounters with multiple providers.
About the Author
Tracy Borgmeyer, LCSWPalliative Care Coordinator