Striving for Humanity in End-of-Life Care

Andrea, Fran’s daughter, had hoped to give her mother something simple yet profound at the end of her life: a peaceful death. Fran witnessed her beloved husband die in unrelenting pain from lung cancer in 1970, tethered to machines in a hospital. Andrea was young when she lost her father, and yet the haunting memories have lingered. She promised herself that she would never let that happen again to her family.  She resolved to help her mother die well.  Therefore, when Fran was in her final days, Andrea and her family gratefully embraced hospice care.

Unfortunately, the chosen hospice failed to provide the compassionate health care that Andrea and her family expected.  On the Friday of a long winter weekend, when Fran could no longer swallow due to complications of lung cancer, she was discharged precipitously to die at home with hospice support. Over four endless days, as Fran was literally begging to die, the family was left to fend largely for itself as her suffering increased. Hospice workers did not visit her mother over the critical two-day transition from hospital to home. By the third day, as Fran endured relentless bouts of choking, a hospice nurse was dispatched but was brusque, unaware of Fran’s medical history and lacked compassion.  In frustration, Andrea contacted a hospice administrator who failed to investigate the issue or follow-up with the family. On the eve of Fran’s death, after another urgent call to hospice, a new provider arrived. She made a futile attempt to reassure Andrea that her mom’s agonizing spectacle of gasping for breath was just nature taking its course.  Stunned, Andrea implored the reluctant nurse to calm her mom with medication. But by this time her agitation had spiraled out of control, and it took one interminable hour before Fran showed any visible signs of relief. The nurse then tragically misjudged the imminence of Fran’s death, and advised the family to go home. Fran died in the early hours of the morning with only the private duty aide by her side. To Andrea’s deep regret, she and her family were not with their mother when she passed away.  Immersed in the grief that hangs on when we don’t get dying right, Andrea’s primary solace is that Fran died in her sleep.

In trying to make peace with these unsettling events, Andrea has struggled to figure out why things went so awry. Her family’s experience may have exposed some serious systemic impediments to the reliable delivery of compassionate end-of-life care that may be instructive for others.

Fran received hospice care only days before she died.  Andrea now recognizes the importance of engaging families in conversations about palliative and hospice care early on, however difficult and painful they are.  Andrea considers that earlier palliative and hospice care would have facilitated stronger relationships with caregivers well in advance of her death – relationships that could have made a difference in the end.

Andrea believes that numerous transitions between hospice providers are an important barrier to compassionate hospice care. Over the course of four days, three different hospice nurses plus various staff manning the 24-hour phone line treated Fran and the family. Frequent staff changes made it impossible for any one caregiver to know Fran, form an alliance with the family or take ownership of her treatment. The designated nurse in charge never returned to Fran’s bedside after the initial admission.  Most critically, these transitions created repeated breakdowns in communication that hindered care and added to everyone’s distress.

“One day when the inevitable arrives for each of us, nothing will matter more than love, comfort and compassion.”

Andrea observed that another impediment to a compassionate hospice experience is a reluctance to acknowledge accountability after a breakdown in care. Immediate and genuine apology can be a powerful antidote to anger and grief, and it can promote healing.  She believes that providers can learn, grow and change by acknowledging and reviewing lapses in compassionate care.   Apologies can also provide important closure for families.

Through her mother’s end of life odyssey, Andrea came to appreciate the complex network of factors associated with a fulfilling hospice experience. She firmly believes that compassion is the cornerstone, and she struggles to understand how one can count on compassionate treatment at the very end of life when it is most desperately needed.

A good place to start, she feels, is recognizing that caregivers, like their patients, are human too. Clinicians attend to the exquisite vulnerability of dying patients, but they may be unaware of their own. Those on the front line must strike a delicate balance between protecting their emotional wellbeing while remaining empathic to patients. Andrea also believes that a culture of self-inquiry, along with a willingness to apologize and implement appropriate changes, gives hospice the greatest chance of delivering compassionate treatment. Adequate staffing and impeccable training are a costly yet indispensable part of this equation. With a growing awareness of the complexities involved in the reliable delivery of compassionate treatment, Andrea wonders whether a gratifying hospice experience may still elude many. “After our heartbreaking ordeal, I began to question how many other families have had similar experiences.”

Andrea becomes pensive when she reflects on her mother’s final chapter. Hospice was unable to guide her mother to a peaceful ending, but Andrea is resolved to improve experiences for others. She finds this an especially meaningful way to honor her parents now. Andrea contends that in the 21st century, no one should die like they did. “I hope that one day everyone can count on a peaceful death.  You only get one chance.”

Andrea envisions that the Schwartz Center can play a vital role in advancing compassionate hospice care. She regards the Schwartz Center Rounds® program as an ideal platform to enhance the work of hospice professionals. As a result, Andrea and her husband are now helping us explore how our programs in compassionate care can be expanded to include hospice organizations as well as palliative care programs and long-term care institutions. Thanks in large part to Andrea’s passion to get this right for other families, the Schwartz Center is now dedicating 15% of our outreach to institutions that serve aging Americans and geriatric caregivers. Andrea maintains:  “One day when the inevitable arrives for each of us, nothing will matter more than love, comfort and compassion.”