The ROYL Family Conference

The ROYL Family Conference - dedicated to crisis avoidance at End of Life Care

• Dedicated to doctor-patient-family/loved ones dialog as ongoing process
• Part of the long term doctor-patient relationship
• Customizable to individual situations
• Comprehensive and inclusive while remaining flexible

Review earlier preparation

• Existence and availability of advance directive
• Delineation and presence of health surrogate power of attorney

Review the current situation

Is the patient able to participate?

May require psychological, medical and legal input to determine patient capability

Different situations will have different emphasis on the ROYL domains (medical, legal, financial and insurance, social services, spiritual, and death.)

Patients with declining outcomes in the next six weeks need an emphasis on all six domains.

All patients benefit from a comprehensive and inclusive approach to Rest of Life planning.

Increase communications and transparency, facilitate the individual patient having her/his wishes met

Where:

Quiet, private and comfortable room

Who:

Patient, if able to participate, doctor, nurse, health care surrogate, family & loved ones, social service workers and clergy

Introduction:

Introduce the doctor and everyone present to each other. Identify the health surrogate and family spokesperson, if that person is different from the surrogate.

Ground rules:

Everyone will speak, no interruptions, no arguments

Review Current Status of the situation

• What has been said
• What has been heard

Medical Review

• Diagnosis
• Prognosis
• Treatments: Cure, Support, Hospice
• Advance directives
• Living will
• Memo to loved ones

Legal

• Wills
• Trusts
• Guardianship
• Economic surrogate power of attorney

Financial

• Plans in place?
• Financial inventory available?
• Financial plans aligned with legal situation?

Insurance

• Catastrophic insurance available?
• Long term care insurance available?
• VA benefits available?

Social Services

• Support
• Hospice
• Adaptive architecture
• Other social support agencies

Spiritual

• Clergy point of contact
• Social organizations
• Philanthropy

After Life Care

• Burial
• Cremation

Discussion with patient: Patient spells out their wishes

• Memo to loved ones
• Doctors, nurses, family, clergy, social services strategize to support patient and family/loved ones
• Looking for a consensus

Discussion without patient:

• Recognition and support for health surrogate power of attorney
• Review advance directives and Memo to loved ones if available
• Ascertain family/loved ones wishes, let them discuss in private if necessary
• May need follow up meeting
• Looking for a consensus

Ancillary help if no consensus available

• Clergy
• Other doctors and nurses
• Medical ethics committee

• Summarize goals and plans; include consensus and disagreements
• Advise that outcomes are unpredictable
• Identify family spokesperson, not always the surrogate power of health attorney
• Document wrap up in the medical chart/EMR

Continuity

• Ongoing meetings
• Reassure no physician abandonment

Is the patient healthy or ill? May affect acceptance.

Is the patient symptomatic? May affect acceptance.

Acceptance may occur at different times

Traditional Stages of Grief are applied to being given bad news in addition to dealing with death. In variable sequence they are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

Note that acceptance isn't the start of the process!

A Note on the Stages of Grief

The Stages of Grief: denial, anger, bargaining, depression and acceptance are often used to describe reactions to getting bad news. Different patients have different reactions. These stages may occur in different order, not at all, or all at once.