My mom paid a painful price for not completing an advanced directive about her preferences for end-of-life medical care. She was an intelligent and organized woman who had everything in her and my dad's life planned out and written down. She even drafted her own obituary. Ironically, she never discussed her end-of-life care preferences with my father or her physician son (me), preferring to talk about “more pleasant subjects.”
As a result, after she developed colon cancer at age 86, my dad and I had to figure out how to treat her post-surgical medical complications of heart and renal failure. She died in hospice care after prolonged, unbearable, and unnecessary suffering. It broke both my dad’s heart and mine.
Unfortunately, my mother’s story is all too common. Nearly one out of four older Americans (24 percent) say that either they or a family member have experienced excessive or unwanted medical treatment, the equivalent of about 25 million people, according to a poll conducted last year by Purple Strategies.
That’s why it is critical for the Centers for Medicare & Medicaid Services (CMS) to get it right when it finalizes its proposal on Nov. 1 to reimburse doctors for communicating with patients about whether and how they would want to be kept alive if they become too sick to speak for themselves.
More than 4 out of 5 Americans (81 percent) support requiring Medicare to cover discussions between doctors and patients about end-of-life treatment options and 83 percent support private health insurance covering these discussions, according to a recent Kaiser Health Tracking Poll. But, relatively few of the survey respondents (17 percent) say they’ve had such discussions with a doctor or other health care provider, including 34 percent of people age 75 or more, and 23 percent of people age 65-74.
Evidence-based research overwhelmingly shows the need for more and higher-quality doctor-patient conversations about the patient’s healthcare goals, preferences and values. A report on “Dying in America” by the Institute of Medicine noted that:
“Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care … The majority of these patients will receive acute hospital care from physicians who do not know them. As a result, advance care planning is essential to ensure that patients receive care reflecting their values, goals, and preferences.”
The report’s “Key Findings and Recommendations” included:
“Frequent clinician–patient conversations about end-of-life care values, goals, and preferences are necessary to avoid unwanted treatment. However, most people—particularly younger, poorer, minority, and less-educated individuals, do not have these conversations. Clinicians need to initiate conversations about end-of-life care choices and work to ensure that patient and family decision making is based on adequate information and understanding.”
Funding Medicare advance planning removes a barrier for doctors to initiate and engage in conversations that ensure healthcare providers honor patients’ treatment goals, preferences and values. Based on my 35+ years of experience as a board certified physician in family medicine,and more recently, as a national medical director for a leading end-of-life choice advocacy organization, Compassion & Choices, I offer these recommendations to strengthen CMS’ proposal:
1. The initial conversation about a patient’s healthcare treatment preferences should take place during the “Welcome to Medicare” preventive visit to ensure an early start to these conversations, before the diagnosis of a terminal illness.
2. CMS should give physicians the flexibility and autonomy to engage in additional conversations as needed. Ideally, these conversations should take place at least once a year as a part of a patient’s annual medical review. However, the patient and physician should be given the autonomy to engage in these conversations as needed. For example, they may need additional conversations based on a patient’s disease diagnosis, prognosis and trajectory.
Compassion & Choices encourages CMS to enact this regulation, provide the necessary funding, and continue to look for and address other potential barriers to these critically important discussions between patients and healthcare professionals.
Grube is a former chair of the Oregon Medical Board