June 2008

"Impossible Hope"

The Schwartz Center Rounds is a series of multidisciplinary forums where caregivers discuss challenging emotional and social issues that arise in caring for patients.  Names and clinical details have been altered to protect confidentiality.

Presenters: Neuro-Oncology Physician, Neuro-Oncology Nurse, Palliative Care Physician, Social Worker, Massage Therapist

Abstract

When caregivers see themselves reflected in a vibrant young patient, interpersonal bonding blurs professional boundaries.  This patient’s early treatment success led invested caregivers to develop unrealistic hope for a permanent cure.  The treatment team discusses a case of a 36 –year- old woman with metastatic cancer and how they coped when the treatments failed.

Clinical Summary

Ms. V, diagnosed with an advanced tumor, responded exceedingly well to surgical resection, chemotherapy and radiation and returned to her premorbid functional level.  Twice in the following years, suspicious lesions were found but proved to be insignificant.  Four years after diagnosis, Ms. V presented with new clinical findings.  Scans revealed widespread metastases.  Subsequent rounds of chemotherapy and radiation were unsuccessful and eventually, Ms. V’s function declined and transitioned to palliative care.

Issues Raised

Patient-Caregiver Relationship

Even in the face of her diagnosis, Ms. V’s personality and adaptive coping mechanisms effectively engaged everyone around her.  Most striking were Ms. V’s optimistic attitude, the personal relationships she formed with each of her caregivers, and the support she offered to other patients.  Ms. V was a positive, loving force who gave hope to others.  Ms. V’s youth and vigor made it easy for her caregivers to see themselves in her.  Ms. V touched her caregivers deeply and, at the Rounds, each shared stories about how Ms. V befriended them. 

In many ways, caregivers allowed Ms. V to cross typical provider-patient boundaries.  She stopped by for unexpected social visits, was helpful to office staff, and was so talkative that they knew a lot about one anothers’ personal lives.  Ms. V’s primary care doctor described her as someone who made her doctor feel better at every visit.  Audience oncologists agreed there is a fine line when it comes to professional distance.  Ms. V’s caregivers were surprised by how involved they became with a patient and by how Ms. V seemed to thrive during treatment – together these factors led to the development of unrealistic hope.

Hope

The success of Ms. V’s initial treatment coupled with the personal connections she formed raised the hopes of each member of the treatment team.  For two years Ms. V exceeded expectations, worked full-time, socialized and exercised.  Each caregiver reported that they held out hope that she would have a positive outcome.  They “suspended belief” for this case.  They wanted her to beat the odds, they believed she would survive and thrive – they didn’t want to lose her.  Their high hopes were dashed as Ms. V began a rapid decline.

Palliative Care

The oncologist struggled as he witnessed Ms. V’s deterioration.  As Ms. V transitioned to hospice care, the oncologist felt he no longer had anything to offer and began to feel marginalized.  While it was clear that hospice was appropriate, caregivers did not want Ms. V to think they were “giving up.”  An oncologist from the audience described how hope changes over the course of treatment.  “Cure is not always the goal, sometimes success can be defined as helping the patient and family through the final stages.”

By nature giving and selfless, Ms. V became increasingly concerned about how her death would affect those who cared about her.  Ms. V’s treatment team found her sister easy to relate to as she was also young, personable, and competently managing Ms. V’s care.  As Ms. V’s functional status declined, caregivers found their bonds with her sister strengthening.  The palliative care physician focused on making sure that Ms. V’s sister had all the necessary supports in place at home and the focus began to shift towards comforting the family.  This was noted to be an important role that a caregiver can play as a patient approaches death. 

Lessons Learned