By Randi Belisomo
NEW YORK (Reuters Health) – With taxes filed, Americans today are being asked to consider life’s other certainty: death, and the myriad complications that often now accompany it.
National Health Care Decisions Day, marked on this date for the seventh year, is one in which patients and health providers are encouraged to think about their own end-of-life preferences. The man behind it, health care attorney Nathan Kottkamp, says such considerations have never been more critical.
“It’s a broken record issue,” said Kottkamp, a member of multiple hospital ethics committees. “Ninety percent of ethics consults I have been involved in deal with end-of-life decisions without advance directives.”
Those conflicts led to his founding of National Health Care Decisions Day, intended to educate the public about advance care planning. The three-step process involves considering the decisions that may need to be made at the end of life, discussing one’s preferences with family members and recording those wishes in some form of advance directive.
Treatments considered in the advance care planning process include the use of both cardiopulmonary resuscitation and mechanical ventilation, along with preferences regarding artificial nutrition, fluids and comfort care.
Kottkamp stresses that while the outcome of such considerations are advance directives (a living will, durable power of attorney for health care or another model), documents are not the effort’s primary goal.
“It has to start with the conversation,” Kottkamp said. “It can end with a piece of paper, but it’s the conversation that matters.”
Eight in ten people surveyed by the California HealthCare Foundation said that if seriously ill, they would want to speak with their doctor about end-of-life care. However, fewer than one in 10 report having had a conversation – including just 13 percent of those age 65 and older. According to Pew Research, more than 42 percent of Americans have had a friend or relative suffer from a terminal illness or coma in the last five years. For a majority of them, the issue of withholding life sustaining treatment arose.
“It’s hard to look at those odds and say, ‘no this isn’t right for me,'” Kottkamp said.
Enhanced technology and unrealistic expectations of medicine’s ability to prolong life indefinitely make these decisions crucial, says clinical ethicist Dr. Julie Goldstein, a palliative care physician at Advocate Illinois Masonic Medical Center in Chicago.
“This ends up translating into the default approach at the bedside, treating with all available medical tools whether or not they are likely to be successful in meeting a patient’s goals,” Goldstein said.
“Despite all of these treatments,” she added, “I repeatedly see patients dying in the hospital while families stand by, engaged in wrenching decision-making without knowing what patients really would have wanted.”
Though Kottkamp acknowledges such conversations among families are often uncomfortable, he says the uncertainty that mounts in hospital settings is even more agonizing. “People want to do the right thing, they just don’t know what the right thing is.”
Educational events linked to National Health Care Decisions Day are planned nationwide at libraries, hospitals and other health facilities.
At Akron Children’s Hospital in Akron, Ohio, organizers aim to expand on last year’s total of 25 participants – this time with raffle prizes. Advance directive forms are available in the hospital’s public spaces to be signed and witnessed.
“The worst time to talk about what you want is when you’re going through a health crisis,” said Lisa Long, the hospital’s palliative care office coordinator.
By talking about these issues in advance, patients and families can consider options clearly and carefully – without life and death pressure.
“There’s no such thing as the right time,” Kottkamp said. “You just pick a day and this is that day.”
The National Health Care Decisions Day website offers more information, including a list of places to find and download advance directive documents.