Patient Advocates as Mediators: Where Do We Draw the Line?

As patient advocates, our primary foc us must always be on the needs of our patient/client. This usually requires us to interface with spouses, siblings/children, family and friends, as well as the complex team of providers including physicians, nurses, social workers, discharge planners, administrators, and more. Add into the mix the insurance companies, lawyers, and financial planners. In short, we must know how to communicate effectively and always in the best interests of the patient.

An important part of our job is to help families navigate the many aspects of healthcare, particularly if the patient is not cognitive or decisional, unconscious, in a coma, and living on life support. There are patients in extreme situations who may not have a DNR, or a living will. We must guide the family to protect their patient by making sure the necessary living wills, powers of attorney, advanced directives, are in place. We must do our utmost to support a family when they are confronted with these types of ultimate human challenges.

What is our role when the family is in conflict? How do we do our job when there is bitter fundamental disagreement about whether to keep a loved one alive through heroic measures despite medical consensus that strongly suggests otherwise?

The ideal situation is a family where there is unity, consensus, and agreement on all the decisions which impact that patient. Hopefully, the patient has fully executed legal documents in place and the family agrees with those plans. What is our role, however, when the family is in conflict? How do we do our job when there is bitter fundamental disagreement about whether to keep a loved one alive through heroic measures despite medical consensus that strongly suggests otherwise? How can we advocate for “quality of life” if a comatose patient’s family cannot even agree on what those words mean?

A Family in Conflict: The Facts

An older gentleman, the family patriarch, is comatose because of a medical error that left him without oxygen for many minutes. He is now sustained by a ventilator after months in the hospital. The prognosis is dire. All medical experts agree that this unfortunate patient has no chance of awakening from his coma. Several family members have concluded that their father is effectively not even alive, and they have completely withdrawn.

The daughter and wife are draining all their assets to pay for a full support team, expensive durable medical equipment, and round the clock care.

The PCP, who understands the family dynamics and acknowledges that the patient will never become conscience, is prepared to meet with the family to discuss palliation and hospice; but the conflicts in the family impede such a meeting from taking place. A daughter and the patient’s spouse hold power of attorney. They insist that the patient remain medically stabilized and they refuse to authorize the hospital to transfer him to an LTAC or skilled nursing facility. They arrange for this elderly, comatose, ventilator-dependent man to be discharged home, where they have spent vast sums recreating a hospital environment in the middle of their living room. The daughter and wife are draining all their assets to pay for a full support team, expensive durable medical equipment, and round the clock care. They have the financial means to provide this level of care for only a limited number of months.

Does the patient need two caregivers around the clock, or a nurse and a caregiver? Should the patient be sent to a skilled nursing facility given that the cost of home care is over $70,000 a month?

The spouse and the daughter insist that their loved one must be fully supported by whatever means possible. The family is so conflicted that the environment becomes toxic and corrosive. There is major conflict over the extraordinary cost of care and finances. There does not appear to be a power of attorney for property and finance. Does the patient need two caregivers around the clock, or a nurse and a caregiver? Should the patient be sent to a skilled nursing facility given that the cost of home care is over $70,000 a month?

The nurses and caregivers are fully exposed to the dynamics of what is happening. They can’t ignore the constant infighting that occurs right in front of them. They continue their work but they are severely impacted by the conflict and clearly under observable stress.

The Patient Advocacy Dilemna

Throughout my involvement with this family, I often questioned what my role as patient advocate meant in this case. I was initially hired to assist the with the discharge process and to organize, hire, manage and supervise caregiving and nursing teams. My responsibilities evolved to include engaging and communicating with the PCP, assisting with insurance issues, and daily oversight and support to the family and the patient.

As time went on, the hostilities grew even more pervasive and I made every effort to guide the family toward mediation, through a trained family mediator. When this option was ignored, postponed, and ultimately rejected, I reached out to the medical providers and encouraged them to meet with the family to provide end-of-life guidance and suggestions. Again- my efforts went nowhere and I began to ask myself, “At what point does a patient advocate terminate services?

Advocates are not trained mediators. But...should we be prepared to take on this role? If we do, we better recognize our limits and reach out for guidance from other advocates and professionals who are experts with these types of conflicts.

I considered terminating the relationship and I was about to do just that when one of the opposing family members approached me asked me to act as the referee. Advocates are not trained mediators. But in a situation like this, should we be prepared to take on this role? If we do, we better recognize our limits and reach out for guidance from other advocates and professionals who are experts with these types of conflicts. Every patient advocate must always keep the patient’s interests at the forefront of any decision-making process. Sometimes we have to walk a fine line. That line can become especially narrow when a power of attorney results in a struggle for power.

As of this writing the patient, who remains my client, has been in a coma for 10 months. The conflict continues. I still question my role. And there appears to be no resolution in sight.