Planning for life-long care


Planning for life-long care

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Informed consent, advanced care planning, and shared decision-making are all ways of managing risks, improving communication, and enhancing patient satisfaction. Barbara Youngberg of Beecher Carlson reports.

As early as 1905 with the famous tort case of Mohr v Williams the issue of informed consent (a patient’s rights in determining the treatments she or he receives) has been discussed by the Court. In this landmark case, patient Mohr agreed that physician Dr. Williams was to operate on her right ear. During surgery, however, Dr. Williams decided that the left ear was in greater need of surgery, and he performed the procedure on the left ear without obtaining consent from Mohr. She later charged the defendant with battery.

The Court found in favor of Mohr for her allegations of battery and stated that in the absence of an emergency a doctor does not have a free license to attempt to remedy all non-critical problems found. The Court found no evidence in this case that the condition of the plaintiff’s left ear presented a serious or life-threatening situation.

"Shared decision-making or advanced care planning recognizes the many variables in a person’s life that may influence the type of care he or she ultimately wishes to receive."

Since 1905, courts have sought to define the parameters of a legally sufficient informed consent. In a more recent case, Canterbury v Spence in 1972, the Court stated, “every human being of adult years and sound mind has a right to determine what shall be done with his own body…” The Court expounded on the necessary elements of informed consent and stated that for consent to be truly informed the patient must be advised of the following:

  • The treatment / procedure that is recommended or to be done; 
  • The risks and benefits of that treatment or procedure;
  • Alternatives to the treatment / procedure being proposed; and
  • The risk of doing nothing.

This traditional process for seeking a patient’s support for proposed care is mostly episodic and linked to a specific treatment or procedure. Much of the informed consent process centers around the execution of a legal form, which often serves to confuse a patient more than it educates. Since these documents are often executed in advance of a specific treatment being offered, there is generally no opportunity to discuss how this treatment fits into the overall objectives or concerns that the patient may have regarding general health or quality of life. Advanced care planning or shared decision-making goes well beyond those traditional treatment specific questions identifying factors in an individual’s life that may influence the decisions he or she makes about the healthcare received.

What is advanced care planning or shared decision-making?

The concept of shared decision-making began to appear in the literature in the late 1990s (following the passage of the Patient Self Determination Act) but gained little traction for a number of reasons:

  • It was poorly defined.
  • It took more time than providers believed they had.
  • The conversations were “revenue negative”; there was no billing code to enhance reimbursement for these conversations. 
  • Providers did not know what questions to ask or how to use information provided.

Shared decision-making or advanced care planning recognizes the many variables in a person’s life that may influence the type of care he or she ultimately wishes to receive. Unlike informed consent, it is not episodic or initiated only when a complex treatment or procedure is being contemplated but rather seeks to align a patient’s values, wishes, and preferences with the treatments available.

Shared decision-making is not meant to address only “end of life” care issues; it attempts to align the expectations of the patient with the treatments offered by providers throughout the course of the patient’s life. Expectations and preferences may change for the patient as he or she transitions through life, so opportunities to confirm or reset expectations are vital.

Questions to ask in a shared decision-making discussion include:

  • What frightens you most about medical treatment?
  • What role does religion, faith, or spirituality play in your medical choices?
  • How does cost influence your decisions about medical care?
  • In terms of future medical care, what goals would you want for your medical treatment (conservation of resources, prolongation of life, focus on pain management, provision of care outside of a hospital)? Describe these circumstances in as much detail as possible.
  • What will most help you live well at this point in your life?

Benefits of shared decision-making

Shared decision-making is an essential element of patient-centered care. It has been identified as a key aspect of patient-provider communication and one that enhances quality, aligns expectations, and better manages cost. Shared decision-making has also been shown to improve patient satisfaction and outcomes. Since shared decision-making is premised on enhanced communication between a patient and a provider, it is likely that this process may also reduce risk.

What shared decision-making is not

There have been many providers critical of the shared decision-making or advanced care planning process, so it is important to dispel the myths and promote a better understanding of the benefits of this type of patient engagement.

Shared decision-making or advanced care planning is not about allowing a patient total freedom to dictate treatment. It is not about forcing the provider to deviate from best practice or evidence-based practice. Shared decision-making does not mandate that individuals other than the patient be part of the process, unless the patient requests it. It does not replace procedural informed consent, although some of the treatments that may be discussed as part of the informed consent process may also be part of shared decision-making or advanced care planning discussions.

Finally, as previously stated, it is not limited to end of life discussions but rather seeks to provide guidance to the healthcare team and assurance to the patient that the values and beliefs that define him or her as an individual are reflected in the care received.

Changing the level of communication between the patient and provider

A cultural change in the manner in which healthcare is delivered may be necessary to maximize the value of shared decision-making or advanced care planning. Providers are accustomed to being regarded as experts and may be uncomfortable in a role where they are asked to consider factors other than those traditionally discussed when obtaining an informed consent. In addition, many physicians are unaware of the types of questions to ask to elicit responses that may help guide them to present appropriate options to patients.

Providers may not wish to go along with what they feel is a poor choice made by the patient, and providers must realize that there may be instances when what the patient is asking from them may not be appropriate or at times even legal. Patients may not want to be involved in the decision-making process or may not see the connection between personal values and healthcare choices.

Initiating the process of shared decision-making

As with any other process change undertaken in a healthcare organization, instituting shared decision-making initially requires commitment from senior leadership. Policies and procedures must change to reflect the commitment of the organization to engage patients in shared decision-making and to respect patient choices once they have been made. Training in communication may assist providers in becoming more adept at facilitating these sensitive conversations.

The following are tips to facilitate communication around shared decision-making:

  • Inform patients about their medical condition in a manner that matches their level of understanding. The use of interactive technology such as videos has been shown to enhance this process.
  • Identify factors (other than medical) that may influence decisions that patients make regarding their healthcare. Recognize that at this stage, patients may introduce factors that influence their choices that are not issues the provider may deem important. (One of the most important aspects of shared decision-making is training the provider to appreciate the importance of respecting patient’s values, preferences, and expressed needs.) Common drivers influencing healthcare decision-making may include religious or spiritual beliefs, financial concerns, wishes or concerns of family members or loved ones, and fear of the unknown including fears about pain and suffering.
  • Recognize that too much information may be overwhelming. The key is to tailor what is provided to the patient and to make it practical and reflective of the choices you are asking him or her to make.

An opportunity to enhance reimbursement

It is rare that hospitals and providers can earn additional revenue at a time when so many attempts are being made to decrease reimbursement or limit care. As of January 2016 shared decision-making or advanced care planning not only provides the opportunity to improve patient satisfaction and but also allows a provider to bill for those discussions.


The concept of shared decision-making or advanced care planning has been discussed for many years, and although many recognized its benefit few believed they had the time to do it or to do it effectively. With reimbursement in place to recognize the value of these discussions and with specific models for successful implementation available, now is the time to educate providers on how to implement shared decision-making into their discussions with patients. It is also the time for organizations to recognize that changes in policies and practices will be necessary to assure that these discussions, once they do occur, are available to all providers so that patients’ wishes can be honored.

Barbara Youngberg is a consultant for Beecher Carlson.

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