Advance care planning (ACP) discussions are not sufficiently incorporated into the care of oncology patients. Studies have consistently found that patients with late-stage cancer have a low rate of completing advance directives (ADs). Yet even the completion of ADs or appointment of proxies may be insufficient to address end-of-life decision making needs that may arise. Disease-specific advance care planning (DS-ACP) was developed to address many of the weaknesses of current end-of-life planning methods. Initial studies have suggested that DS-ACP can improve the experience of patients with chronic conditions. This article describes DS-ACP and how it can benefit oncology patients, their proxies, and their health care providers.
ADVANCE CARE PLANNING
Following the implementation of the Patient Self-Determination Act (PSDA) in 1990, ACP programs began to focus on promoting and evaluating the impact of advance directives. The early assumption was that if more people were made aware of their right to complete ADs, end-of-life care would then match patients’ goals and values.1 However, providing patient-determined care near the end of life has proven to be much more complex.2
Low participation, availability, and specificity Research on ADs has determined that the rate of completion of directives is low, physicians lack awareness of directives when patients do complete them, and the inclusion of vague instructions makes decision making difficult. A summary of research funded by the Agency for Healthcare Research and Quality (AHRQ) indicates that less than 50% of the severely or terminally ill patients studied had an AD in their medical record; between 65% and 76% of physicians whose patients had an AD were not aware that it existed; having a directive did not increase documentation in the medical chart regarding patient preferences; and language in the directives was often not specific enough to provide clear instructions.3 A national study of ADs conducted 10 years after ratification of the PSDA found that people who died in nursing homes or at home with hospice care were more likely to have completed ADs compared with those who died in hospitals.4 Respecting Choices, the systematic ACP program initiated in La Crosse, Wisconsin, is one exception to national AD trends of low-use, low-availability in medical records, and low-specificity in guiding clinical decision making. This program has consistently documented and sustained high levels of ADs available in medical records among residents who die. It has also documented high compliance with patients’ wishes.5
In studies of cancer patients, the availability and usefulness of ADs remain low. A recent review of the medical records of 1,186 patients with incurable pancreatic cancer found ADs were present in the medical records of only 15% of patients. Of those who did have a directive, 42% had a different person designated as their health care agent in their AD than the individual who appeared as the primary contact person in the medical record.6 Another study of 75 consecutively admitted patients with cancer found only 41% had completed an AD.7 Other studies have found low levels of ADs among patients with advanced cancer or terminal illness.8,9 When directives did exist, the language may not have been specific enough to guide clinical decision making. For example, directives often focus on life-sustaining treatment and incorporate generic language that may not provide enough guidance for the wide array of decisions people with cancer and their loved ones face. Among 125 proxies of advanced cancer patients who had completed ADs, the proxies reported they found the AD to be helpful in decision making only about 50% of the time.10
COMMON BARRIERS TO ACP
Proxies The appointment of proxies (eg, power of attorney for health care) is a recommended component in the completion of an AD, but even this may be inadequate to guide and ensure patient-determined care. Research on the use of proxies indicates they are often not present to make decisions or are too emotionally upset to offer balanced and thoughtful guidance.3 Other research has demonstrated that proxies are often not capable of accurately predicting the desired choices of the patient and frequently lack enough information to serve as capable decision makers.11,12 A review study found proxies incorrectly predicted patients’ treatment preferences in one-third of cases and that efforts to improve surrogate understanding of patient preferences were unsuccessful.13 A recent study of decedents older than 60 years documented that substitute decision makers were needed in approximately 30% of deaths.14 These findings provide compelling evidence of the need to better prepare and assist proxies for their duties as decision makers.
Communication gaps A lack of communication between providers and patients is another commonly identified barrier to successful ACP. Many professionals are uncomfortable with and lack appropriate training to initiate complex end-of-life decision-making discussions.15 Studies of physician communication with cancer patients have identified certain communication skills and discussion topics related to ACP that may increase patient depression and anxiety levels if they are not included when discussing prognosis and planning for further treatment.16,17 Poor communication with patients about ACP may have detrimental effects on the patient’s and caregiver’s mental health.18
DISEASE-SPECIFIC ADVANCE CARE PLANNING
DS-ACP is designed for patients with chronic progressive illness who have begun to experience decreased functional status, increased comorbidities, more frequent hospitalizations, or a higher risk for complications that might leave them unable to make their own health care decisions. The in-depth planning process should include the patient, the appointed proxy (and other family members), and a trained facilitator. Tailored to the patient’s specific disease and potential complications, this patient-centered intervention aims to uncover gaps in understanding, clarify the patient’s goals for future medical care, and improve communication between all involved parties.