January 2008

"Disagreement about Dying Wishes"

The Schwartz Center Rounds is a multidisciplinary forum 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:  Oncologist, Oncologic Nurse Practitioner, Inpatient Nurse, Inpatient Physician, Hospital Social Worker

Abstract

A family member refuses end-of-life pain control for his parent.  The health care team struggles to understand the family member’s belief system, explores the legal and ethical implications of the conflict and ultimately provides comfort for the patient.

Clinical Summary

Mr. Q was a 64-year-old immigrant man of Caribbean descent with metastatic cancer that was unresponsive to chemotherapy.  The oncology team continued to treat him symptomatically and he did reasonably well for a longer period of time than expected.  Although he was experiencing significant bone pain, he tried to avoid narcotic medication in order to stay alert and clear minded.  Mr. Q developed a sudden serious medical complication and was admitted to the hospital.  When Mr. Q’s pain and shortness of breath escalated, his son opposed the health care team’s pain management plan.  Mr. Q passed away in the hospital.

Issues Raised

Communication

As Mr. Q’s ability to speak English was limited, his son Joe served as his translator and participated in all medical decision making.  The outpatient oncology team described Joe as a loving son who accompanied Mr. Q to all his appointments, was respectful, supportive, reasonable and an excellent caretaker and advocate for his father.  Once in the intensive care unit, Joe was troubled by his father’s confusion and the fact that it was difficult to communicate with him.  Joe opposed the use of clinically appropriate pain medications, stating that he believed in suffering at the end of life.   The medical team explained to Joe that Mr. Q’s confusion was a result of his illness rather than the analgesics.  Although the floor nurse, Nurse F, tried several approaches, she felt that she could not get through to Joe.

The inpatient care providers, including Nurse F, the social worker, and Dr. C, conferred with each other about how to manage this issue.  They embodied a team approach and included Mr. Q’s outpatient providers.  Dr. O, the oncologist who had been caring for Mr. Q for years, consulted with Dr. C, Nurse F and Joe by phone and tried to get to the heart of the issue but Joe’s position was that they would agree to disagree.  The medical team conferred with clergy members for advice as well.  Overall, the team utilized a variety of communication strategies and still felt the conflict could not be resolved. 

Competence

Joe tried to prevent the administration of narcotic analgesics by insisting that he was his father’s health care proxy and that Mr. Q was not oriented enough to make his own decisions.  However, Nurse F, who had overheard Joe and Mr. Q arguing in their native language, informed Joe that Mr. Q was alert and responsive and had requested stronger pain medications.  Joe still refused to allow it, saying that his father was not aware enough to make his own decisions.  Joe’s conviction was that Mr. Q had suffered in life and should suffer in death. 

End of-Life Discussions

Advance directives and end-of-life planning issues were not addressed in the outpatient setting as Mr. Q’s condition had been stable for so long.  The oncology team who had developed a relationship with Mr. Q and Joe over several years never expected the conflict that developed in the hospital.  Joe had been devoted and reasonable throughout outpatient management.  The provider team did not see a need to put the health care proxy choice in writing. 

The unexpected nature of Mr. Q’s admission turned these into acute issues.  Early in Mr. Q’s admission, the medical care team began discussions about code status with Joe and other family members.  Though initially ambivalent, once the care team strongly recommended DNR/DNI (Do Not Resuscitate/Do Not Intubate) status, Joe agreed. 

The inpatient team wondered if Joe’s resistance to DNR status and to analgesics was related to denial of his father’s imminent death.  However, Mr. Q’s ongoing care providers and the covering providers who helped Joe establish code status were certain that Joe was aware of and accepted the gravity of his father’s condition.

Pain Management

Throughout most of his outpatient treatment course, Mr. Q preferred Tylenol #3 for pain control rather than stronger analgesics due to his desire to avoid clouding his cognition.  However, when Mr. Q began to experience increased pain as an outpatient, his son Joe contacted the medical team to request stronger medication.  Once hospitalized, Joe unexpectedly expressed strong opposition to the use of narcotic analgesics.  During his hospital stay, Mr. Q’s level of discomfort increased markedly during a holiday weekend when the health care providers most familiar with Mr. Q and his son were out of town, leaving the crisis management to providers who did not have a relationship with Joe. 

Dr. C, the covering physician, wanted to respect this patient’s wishes and belief system and therefore felt uncertain initially about whether or not to prescribe the medications he knew were most appropriate.  However, when Dr. C assessed Mr. Q, he found the patient was able to localize specific areas of pain.  Despite the language barrier, Mr. Q was able to appropriately respond yes or no nonverbally when questioned about pain and was able to indicate his desire for pain medication to Nurse F and to Dr. C.  Though the medical care team informed Joe that Mr. Q needed stronger narcotics to control his pain and shortness of breath, Joe disagreed.  In addition, Joe shared with the medical team his fervent belief that individuals should suffer at the end of life and therefore he did not want the medical team to make Mr. Q too comfortable.  Dr. C tried switching from morphine to another narcotic agent, hypothesizing that perhaps there was a strong association for the family between morphine and death, but this approach was not successful as Joe continued to focus on the importance of suffering at the end of life.

Despite heated discussions and threats of legal action from Joe, the medical care team ultimately chose to provide adequate pain medication to Mr. Q.  Nurse F administered the medication despite Joe’s resistance, escalation, and accusations that she was killing his father.  Nurse F remained professional and informed Joe that she was obligated to treat a patient in pain.  Other members of Mr. Q’s family, aware of his need for pain control, began asking Nurse F to administer Mr. Q’s pain medication before Joe arrived to circumvent the conflict.  After receiving appropriate medication, Mr. Q was noticeably more comfortable.

Mr. Q’s ongoing health care team viewed this pain management conflict as an isolated issue, given Joe’s history of devotion and reasonable behavior.  Dr. O found this unexpected disagreement with Joe at the end of Mr. Q’s life quite upsetting.  Even throughout this conflict, Joe repeatedly expressed his gratitude for the care Mr. Q was receiving but remained firm in his disagreement about pain medications. Though Joe was forceful about his decisions, he was never aggressive toward staff.

Provider/Family Conflict: Treatment at Home

The conflict escalated when Joe insisted on taking Mr. Q home during a holiday weekend.  Although dying at home with loved ones was understood to be clearly preferred in Mr. Q’s culture, hospital staff were uncomfortable spontaneously releasing Mr. Q since home oxygen and other supportive services could not be quickly arranged.

The medical team consulted with hospital attorneys and the hospital’s ethics committee for some guidance.  The team was advised that legally they could keep the patient hospitalized, based on state law that allows hospitals to usurp the role of health care proxy under these circumstances.  In addition, there was no documentation of Joe as the health care proxy, Mr. Q was able to communicate nonverbally, and legally the patient’s wishes take precedence.  Once Dr. C explained that Mr. Q would be staying in the hospital, Joe accepted it.

Cultural Differences/ Alternative Belief Systems

Joe and Mr. Q represented many different subcultures based on their religion, ethnicity, immigrant status, and strong leadership roles in a secular group whose processes and beliefs tend to be secretive.  In their attempt to try to understand Joe’s belief system, the medical team consulted with hospital staff members and clergy who shared the same cultural and religious backgrounds as Mr. Q. They learned that though the desire to have a loved one at home surrounded by family at the time of death was consistent with Mr. Q’s cultural background, the belief of suffering in death was not a part of Mr. Q’s ethnic or religious affiliations. 

The medical team offered to have a representative of the clergy visit Mr. Q, but Joe declined, stating that he would be providing the spiritual component of his father’s care.  When Joe was questioned about his beliefs about pain he did not elucidate his viewpoint, he simply stated that he knew what was best for his father.  Care providers surmised that this belief may have stemmed from the strong secular group affiliation Mr. Q and Joe had in common.

End of the Story

Nurse F called Joe one evening to advise him to come in as Mr. Q was likely to die in the next few hours.  When Mr. Q passed, he was alone. Nurse F placed some roses near his body, as was customary in her culture, hoping that the gesture would not offend Joe.  Joe came in after Mr. Q passed away and Nurse F told him he could spend as much time with Mr. Q as he needed.  Joe respectfully spent several hours alone grieving his father’s death as he spread the rose petals over his body.

Lessons Learned

• Ongoing education and discussions about advance directive choices should begin in the outpatient setting, before acute issues arise.  All families should be asked to document health care proxy choices.

• A patient’s wishes always outweigh a family member’s. Even a designated health care proxy cannot make decisions if a patient is still able to communicate his/her own desires. 

• Health care providers and institutions should seek legal counsel when conflicts over treatment choices arise.   There may be laws in place in your state pertaining to the issue.

• As the health care system focuses on expanding cultural competence, providers may be asked to accept other belief systems without fully understanding them.