By Allan Zuckoff, PhD, and Monica Soni, MD
New Century Health and our Vital Decisions solution seek to ensure more cancer patients receive end-of-life care that aligns with their wishes.
Patients with advanced cancer who discuss and document their preferences for end-of-life care and surrogate decision-making follow different care trajectories than those who do not. They tend to choose palliation over aggressive measures—such as mechanical ventilation, resuscitation and ICU admission—and they are more likely to die at home or under hospice care. These differences are associated with better quality of life among patients, higher satisfaction and better post-bereavement adjustment among caregivers, and reduced cost of care.
Advance care planning (ACP) with cancer patients should begin early in the illness trajectory and during periods of relative medical stability, according to both American Society of Clinical Oncology consensus guidelines and CMS Oncology Care Model recommendations. Changes in the patient’s condition or transitions of care should trigger routine reviews of the plan.
However, a small minority of cancer patients report ACP conversations with their oncologists. A recent study of patients with metastatic solid tumors and hematologic malignancies who were admitted to an ICU and later died in the hospital found that just 15% had advance directives upon admission. Nearly all wanted full resuscitation upon ICU admission; 65% went on to be intubated and 14% received CPR.
If initiated at all, discussions about end-of-life care usually occur in the late stages of illness or during acute hospital admissions, and they are rarely reviewed afterward.
Social and Systemic Barriers to Effective ACP
Effective ACP with cancer patients requires multiple consultations over time, approaches ACP as an evolving decision-making process, actively engages patients and caregivers, takes an interdisciplinary approach, and monitors engagement across the illness trajectory. Instead of a "check-box" exercise focused narrowly on specific life-sustaining interventions and resulting in a static, difficult-to-interpret advance directive, it is a fluid process involving recurring conversations about patients' values and evolving goals of care that include a trusted surrogate decision-maker.
Unfortunately, several barriers keep patients and the care team from realizing this ideal, including provider attitudes. Although ACP has not been found to increase anxiety or hopelessness in advanced cancer patients, oncologists may hesitate to raise the topic until illness is very advanced to avoid alarming patients, undermining hope, or reducing patients' willingness to endure difficult treatments. Also, oncologists may feel they do not have the time or skills to engage patients and their loved ones in these difficult conversations.
Yet, even when these conversations occur, systemic factors can keep a "living will" from becoming a living, breathing document. How are the patient's wishes documented and shared with the care team? How do we ensure surrogates know the patient's documented preferences and honor them? Can the health care system deliver on these wishes? These are vital connections to be hard-wired into the system.
Integrating ACP into Managed Oncology
Bringing together respective expertise in clinical interventions to improve the quality of care, Vital Decisions and New Century Health are piloting a new program to make sure these critical connections get made and introduce patient preferences and shared decision-making constructs into managed oncology care—earlier and throughout the care journey. The program uses New Century Health's real-time clinical data to identify patients at key points of diagnosis, prognosis and disease progression, and allows Vital Decisions to effectively coordinate care with the physician care team.
It will facilitate engagement, completion and acknowledgement of advance directive documentation and referrals to palliative care and hospice services.
Through this pilot we will soon have a rich source of clinical data on meaningful impact of ACP: We are measuring the likelihood of a patient to engage in advance care planning across dozens of appropriate moments—urgent and non-urgent, with and without the presence of a surrogate. We are tracking when a patient expresses interest in palliative care or hospice and when advance directive documentation is completed. Long-term, we will evaluate the influence of direct communication with the care team, improvements in goal-concordant care, access to palliative care, and most importantly, the trajectory of patients' care. Together, we will identify the most impactful ways to bridge the gaps in ACP and systematically elevate the patient's voice in high-value oncology care.
About the Authors
Allan Zuckoff, PhD
Dr. Zuckoff is Vice President, Clinical Program Development at Vital Decisions. Prior to joining Vital Decisions he spent two decades in the departments of psychiatry and psychology at the University of Pittsburgh. He is the current chair of the Board of Directors of the international Motivational Interviewing Network of Trainers (MINT).
Moni Soni, MD
As Associate Chief Medical Officer, Dr. Monica Soni works to ensure high-quality, cost-effective care for patients and the best possible experience for providers. She is a board-certified, practicing internal medicine physician with over a decade of experience in both inpatient and outpatient safety net care. Immediately prior to joining New Century Health, Dr. Soni served as the director of specialty care for the Los Angeles County Department of Health Services, the second-largest municipal health system in the United States. She is also an assistant clinical professor within the UCLA Department of Medicine.