Importance of Early Initiation of Advance Care Planning

Every day, health care providers (HCPs) care for patients with advanced chronic illnesses. At times, HCPs make critical treatment decisions without input from the patient. As a result, patients are often confused about their disease trajectory, prognosis, benefits and burdens of treatments, and outcome preferences.¹ Unfortunately, limited research has been conducted on patients who have chronic illnesses, such as congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD), regarding early discussion of advance care planning (ACP) and advance directives (ADs). This gap in the knowledge base has contributed to a delay in the initiation of ACP for patients with COPD or CHF, especially for those with end-stage illness.

Background

The Patient Self-Determination Act (PSDA) was passed in 1990 to inform patients of their rights about health care choices while in the hospital, but the completion rate for ADs remains poor.² The 3 key elements include the right of patients to facilitate their own health care decisions, the right to refuse or accept treatment, and the right to make an AD.

One of the reasons for the poor AD completion rate may be increased confusion about the difference between ACP and an AD.³ Advance care planning is a discussion about overall goals of care related to health care and progression through the life cycle. Advance directives focus on more specific information, including who will be designated as health care proxy, which health care interventions would be requested and which would be declined, and decisions regarding code status and organ donation.

A case study was conducted at a long-term care facility to test beliefs that residents who made their wishes known through ACP would have a positive experience at the end of life (EOL).³ The study allowed the residents to provide direction on what are and are not acceptable treatments at EOL. Before this study, most residents did not have a health care proxy and had not discussed the topic of EOL care with their HCP. Treatment choices were also not designated.³ Results demonstrated that ACP had positive outcomes for residents and family members, including documentation of an AD, autonomy in decision making, person-centered approaches to care, and dying with dignity.

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Much of the research regarding ADs has been conducted with seniors, hospitalized patients, and those with critical or terminal illnesses. A study by Jackson and colleagues examined attitudes, experiences, and preferences about ADs among adults of all ages. The study used an age-stratified random sample of patients from a large managed care organization.⁴ Findings revealed that older subjects were likely to be comfortable with and complete an AD. The most valuable outcome was the discussion of personal wishes with family and loved ones. Overall, the findings of this study concurred with the findings of other studies demonstrating that patients wanted control over EOL care decisions or wanted family members or loved ones to make those decisions. Consequently, patients not only believe the decisions are their responsibility, but also feel comfortable if their HCP initiates this conversation.⁴

Open and direct discussion regarding care planning can ease many of the fears related to EOL care. Discussion of an AD is a way to prepare for death and dying, rather than just a preparation for being incapacitated in the future. The process allows improved communication between patients, surrogates, and HCPs.³

The importance of communication with the patient’s primary care provider (PCP) regarding discussion of ACP or an AD is demonstrated in a longitudinal study completed by Ramsaroop and colleagues from January 1991 through July 2005. This systematic review of studies was designed to increase the completion of an AD in primary care settings.⁵ The study reviewed interventions that were most successful in improving the AD completion rate. The investigators extracted physician and patient barriers to completion of an AD. Findings suggested that the most successful intervention for completion of an AD were conversations that took place between patients and HCPs about ACP and occurred over multiple visits. By contrast, passive education using written materials without any direct counseling was relatively ineffective.⁵ The study also demonstrated the importance of completion of an AD in the primary care setting, gauging patient readiness to complete an AD, and having the PCP initiate the AD conversation.⁵

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If communication does not occur between patients and HCPs, care preferences are often not documented. Without this documentation many patients do not receive appropriate palliative care services when needed. Palliative care is not available to and therefore often not used with patients with nononcologic diseases.⁶ A study by Mahtani-Chugani and colleagues evaluated barriers to providing palliative care to nononcologic patients and proposed strategies to overcome them. Findings suggested 4 barriers: (1) lack of clarity about illness and prognosis; (2) discussion limited exclusively to the curative approach; (3) avoiding terms such as “terminal illness”; and (4) cheating death, including linking nononcologic disease and death.⁶ A strategy to overcoming these barriers highlighted improved communication between HCP and patient and understanding that the communication process is as important as the content of the message. Therefore, equitable palliative care services should be offered to both nononcologic and oncologic patients.⁶