Path to avoiding unwanted end-of-life medical treatment

David R. Grube

My mom paid a painful price for not completing an advance 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 goals 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 and unnecessary suffering. It broke my dad’s heart and mine.

Unfortunately, the story is all too common. Nearly 1 in 4 older Americans (24 percent) say that either they or a family member have experienced excessive or unwanted medical treatment. That’s the equivalent of about 25 million people, according to a poll conducted last year by Purple Strategies. A key reason for this problem is only about 1 in 6 Americans (17 percent) say they’ve had discussions about their end-of-life health care goals, preferences and values with a doctor or other health care provider

Evidence-based research overwhelmingly shows the need for more and higher-quality doctor-patient conversations about the patient’s health care goals, preferences and values. The report “Dying in America” by the Institute of Medicine notes 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.”

One important step that should facilitate advance care planning is the Centers for Medicare & Medicaid Services’ recent decision to reimburse doctors for communicating with patients about their preferences and values about end-of-life care.

As a next step, I urge CMS to stop reimbursing health care professionals for providing unwanted medical treatment that directly violates a patient’s documented end-of-life care goals.

In addition, I encourage Congress to take steps to ensure that Americans get the end-of-life treatment they want.

■Establish federal payment for palliative care consultations with health care providers who will advocate for and support the values and choices of the patient with an advanced illness or nearing the end of life.

■Ensure that there are enough trained palliative care professionals to provide this service.

■Ensure advanced illness care encompasses access to an interdisciplinary care team, such as board-certified hospice and palliative care physicians, nurses and social workers.

■Allow patients the option of enrolling in hospice while continuing to receive disease-specific and restorative treatments if patients still want them.

Absent these reforms, poor understanding of treatment options and/or lack of acknowledgment of the extent of the illness may lead to inadequate planning, dissatisfaction with the process, unnecessary medical treatment and loss of quality of life.

A physician, David Grube is a national medical director for Compassion & Choices, an end-of-life choice advocacy organization.