October 2007

“Making Room for Alternative/Complementary Therapies to Connect with a Challenging Family Member”

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:  Pulmonary Intensive Care Unit (PICU) Physician, 2 PICU Nurses, Social Worker

Abstract

When a family member advocating for a patient has an alternative belief system, medical care providers must find common ground in order to effectively communicate the clinical facts, forge a decision-making partnership, and support appropriate care choices.  Caregivers in this case needed to balance appropriate care for a critically ill patient and manage a collaborative relationship with the patient’s daughter who endorsed a variety of non-traditional approaches.

Clinical Summary

Mr. R, previously an independent 79-year old man generally in good health, underwent a surgical procedure followed by multiple medical complications, and ultimately required ventilator support in the pulmonary intensive care unit (PICU).  Mr. R’s daughter chose to pursue aggressive interventions.  Mr. R improved enough for discharge; however, he was soon readmitted with sepsis, respiratory decline, and multi-organ failure.   After a long hospital course and multiple discussions with Mr. R’s daughter, the decision was made to withdraw support and Mr. R eventually died.

Issues Raised

Unrealistic Expectations

While providers thought it unlikely Mr. R would ever return to baseline, his daughter Paula initially focused on getting her father home.  When Mr. R exhibited unexpected early improvement, Paula had high expectations for recovery during his subsequent decline.  It was challenging for caregivers to address Paula’s unrealistic hopes.

A Challenging Family Member

Paula, who had a belief system that included a wide range of alternative therapies, was the point person for medical caregivers.  Despite Mr. R’s grave condition, Paula expected pure affirmations from staff.  She forestalled discussions of any information that she perceived as negative.  Paula expressed frustration towards the nursing staff for their paucity of positive messages.  Caregivers described Paula’s approach as “relentless optimism.”

Nurse Smith felt somewhat put off by the alternative approaches. She explained to Paula that there was very little hope for recovery for Mr. R.  Thereafter, Paula avoided speaking to Nurse Smith, shifted her visiting hours and often did not return phone calls to the medical team.  Nurse Smith felt frustrated and emotionally drained by Paula. At times she felt she might recuse herself from the patient’s care.  However, Nurse Smith focused on providing care and comfort for Mr. R and found it helpful to discuss her feelings with colleagues.

It was initially difficult for the social worker involved to find an empathic connection with Paula. She had a pattern of missing appointments and presenting a litany of complaints about the medical staff.  The attachment strengthened when Paula moved beyond her demands and shared personal concerns for the stress on her family.  It became clear that Paula lacked supports and was working full-time to arrange complementary care for her father.

Nurse Jones was not personally aggrieved by Paula’s criticisms and they slowly developed a relationship of mutual respect. Though new to complementary approaches, Nurse Jones showed an interest in Paula’s beliefs.  Paula began to trust Nurse Jones, and the nurse observed that the healing rituals also helped Paula with her own grieving process.  When Paula invited her to join the complementary practices, Nurse Jones politely stated that she wished Mr. R well but did not feel comfortable participating as she did not share Paula’s beliefs.  Of note, Nurse Jones occasionally asked for shifts wherein she did not take care of this patient, due to the emotional strain.

Alternative/Complementary Medicine

When interacting with Paula, Dr. Brown, the intensivist physician, negotiated parallel discussions of traditional medical treatment and the alternative approaches suggested by Paula.  Dr. Brown tried to welcome complementary ideas by allowing interventions that would do no harm and were not disruptive to staff, such as the use of music, massage and aromatherapy. 

Communication Promoting Collaboration

Dr. Brown persistently balanced his duty to provide appropriate care for Mr. R with the importance of creating a collaborative relationship with the patient’s daughter.  Dr. Brown nurtured a thoughtful approach that was effective in communicating with Paula.  To respect her need for positive messages, Dr. Brown began each meeting by sharing something positive, e.g. a lab value that had remained stable.  Dr. Brown then broadened the discussion to address appropriateness of care. 

As Mr. R declined, Dr. Brown began setting limits regarding expectations of treatment success in a way that Paula could accept.  Dr. Brown agreed that aggressive medical management was indicated if it would be helpful to Mr. R, and advised that CPR would not be helpful and was therefore not appropriate.  Dr. Brown built on this foundation of positive framing and tried to collaboratively refocus the goals of Mr. R’s treatment.  Dr. Brown shared that he has learned that challenging family members are often scared and confused, and as a result, the more difficult the family, the more he pursues contact and communication with them. 

End-of-Life Care

Mr. R’s comfort was a priority to Dr. Brown, but at times the conflict of agendas undermined his ability to maximize comfort.  As Paula was not willing to accept bad news, she began to withdraw as she realized that things were not going well.  The PICU team gave Paula a great deal of latitude as she slowly accepted that she could refocus on making her father’s decline and death more positive.  On the night of Mr. R’s death, Nurse Jones encouraged Paula to let her father go and held hands with her for a goodbye prayer.  After Mr. R was gone, Paula was thankful to all of the staff, and expressed her appreciation to Dr. Brown.

Lessons Learned

• Challenging family members may be fearful or struggling with underlying issues.

• When family members are perceived as difficult, caregivers may experience feelings of powerlessness, frustration, and lack of control.

• Reactions of anger or discomfort on the part of caregivers can block their ability to empathize with a patient or family member.

• Finding common ground with a challenging family member can open communication channels and enable a collaborative relationship.

• In this case, the ability of the medical team to welcome non-invasive forms of alternative/complementary therapy, while appropriately guiding the patient’s care and comfort facilitated a decision-making partnership.

• Orchestrating conversations with family members about expectations can be challenging.  While the future is unknown, the goal should be to support family members’ hopes while helping them prepare for less desirable outcomes.

• Discussing status of care tends to be an iterative process.  It is important to demonstrate that the team providing care is empathic and is doing all they can to correct the patient’s problems.

• Whether patients are conscious or not, reflecting a positive mood in their presence sends a good message to patients, family members and co-workers.