Concerns and wishes – Communication of advance care planning

End-of-life decisions are challenging and at times may range from extremely complicated to tenuous at best when a patient is incapacitated and family or surrogates are put in a sudden position to make critical decisions about care. With advance care plans (ACP) in place, the process becomes more straightforward and this predetermined direction can provide comfort by clarifying the intentions of the patient. Both healthy and chronically ill patients should consider advance care planning because ‘we never know when, how, or whom a serious illness will strike. If and when it does, each one of us wants, not simply the best possible care for our body, but for our whole being.’¹

Introducing the subject of advance care planning during a routine office visit by the physician or care team, long before a patient becomes seriously ill, makes it easier for patients to think through end of life issues more rationally and carefully.² While many of us in the field of healthcare communications may have a role in the process, the trusted partner remains the medical professional; research has shown that most patients believe that it is their physician's responsibility to start this conversation.³ Helping patients and surrogates navigate through a variety of potential scenarios and weigh the risks and benefits of various treatment options may continue to evolve as a shared responsibility.

Many worldwide agree that appropriate staff training on ACP is needed to communicate effectively and to understand the legal and ethical issues. Yet there are important differences and standards to note from country to country. In the United Kingdom some prescribe that there is ‘no set format for making a record of advance care planning discussions, although having a person's wishes documented will prove helpful to those involved in their future care.’²

In the United States, the Agency for Healthcare Research and Quality suggests the following regarding ACP, which has been slightly adapted for presentation here (Editor's note, it is advisable to check the laws of your respective country prior to initiating these advance care discussions)⁴:

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Introduce the topic – Begin the discussion by explaining why advance care planning is important: it allows your patients to communicate to you and family members (and surrogates) what kind of care they want if they become critically ill. It also allows them to designate a representative who will make health care decisions for them if they are incapacitated.

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Offer Information – Using your medical knowledge, present a range of serious medical situations and treatments your patients may face. Establish your patient's preferences for treatments in these situations based on personal desires and values. You may find a worksheet or other written document helpful to patients in organizing their thoughts. Your patients will also need time to reflect and review the information you have discussed with them outside of the office. You will also need to explain to patients the legal terms and documents which must be completed to establish an advanced care directive once a patient's preferences have been established. You can provide this information yourself or refer patients to other respective sources provided by government departments of health or non-government organizations with a specialized focus/expertise in these topics of advance care.

At a minimum, patients will need to understand the following advance care planning terms⁴:

•.	Advance Directives ○ Prior directives by the patient for his or her health care fall into two categories: ▪ those that pertain to instructions for medical care ▪ those that pertain to designation of a proxy for the patient
•.	Instructional Directives for care can be recorded in a number of types of documents: ○ A living will is usually a simple statement specifying no heroic care in case of poor prognosis. A personal letter may also be used ○ A values history is a statement of values regarding health care in life-threatening illness situations ○ A medical directive is a set of instructions based on likely scenarios of illness, goals for care, and specific treatments, combined with a general values statement. It is also combined with a proxy designation section
•.	Health Care Proxy ○ A person who is empowered to make decisions in the place of the patient ○ Also known as a durable power-of-attorney for health care

More recent research in ACP has concluded that communication can begin in the outpatient setting and that medical professionals can assist and help prepare patients ‘to communicate their values and needs at the time a decision must be made and to establish leeway in surrogate decision making’.⁶ For this communication in healthcare, ACP must be ultimately be conducted by a skilled communicator that is aware of the context in which the conversation may be appropriate, understands the legal and ethical issues involved (respecting the autonomy of the person) and is culturally competent as they focus on patient-centeredness in this critical two-way communication.

Additional information

Notes on contributors

Jamie Rauscher

Jamie Rauscher, MSc, is currently a Marketing Project Manager at Brigham and Women's Hospital, a Course Facilitator in the Boston University Online Master of Science in Health Communication program, a Communications Consultant at Harvard Pilgrim Health Care and a reviewer for the Journal of Communication in Healthcare. She tweets daily at @jamierauscher, blogs at Health JAM http://www.healthjam.net/ and can be reached via email at [email protected].

Mario R Nacinovich

Mario R. Nacinovich, Jr, MSc, is currently Managing Partner at AXON, a Course Facilitator and member of the Adjunct Faculty in the Boston University Online Master of Science in Health Communication program, and the Editor-in-Chief of the Journal of Communication in Healthcare. He tweets daily at @nacinovich and can be reached via email at [email protected].