Sometimes, the right policy can come at the wrong time. Consider an article on how the coronavirus has upended nursing homes, hundreds of which have at least one—and in many cases far more than one—case among residents.
A Politico newsletter discussing the article last Monday included an ominous blurb: “The National Hospice and Palliative Care Association has been pushing Congress to give more support to advance care planning, perhaps in the next stimulus bill.” While the advocates may have the best of intentions, discussing advance care directives in the context of a global pandemic raises serious ethical questions.
Planning for Worst-Case Scenarios
End-of-life care remains a touchy political subject. In 2009, following comments by Gov. Sarah Palin (R-Alaska) about “death panels,” she defended her characterization of Democrats’ health care effort by pointing to a provision in a House draft allowing Medicare to cover end-of-life counseling. While the controversy prompted congressional Democrats to drop the provision from the bill that became Obamacare, the Centers for Medicare and Medicaid Services (CMS) in 2015 approved regulatory changes allowing Medicare to pay physicians for end-of-life consultations with their patients.
In most cases, talking through options and allowing patients to determine their intended course of treatment gives patients a voice in their own care. Advance care planning—whether through a formal directive, or even informal conversations amongst family members—also takes a weighty burden off of loved ones at a time of immense stress and emotional anguish.
My mother has told me throughout my adult life that, in extreme circumstances, she does not want medical personnel using extraordinary means to extend her life. Heart-breaking as it would be for me to relay that decision to her doctors, I could at least know I did not make that decision, but instead merely relayed a wish that my mother has expressed, consistently and repeatedly, over many years.
The Power of Persuasion
Under most circumstances, encouraging individuals to have these types of end-of-life conversations with their family members and physicians represents sound medical practice and wise public policy. But the middle of a global pandemic by definition does not constitute ordinary circumstances.
Here’s one telling example from Britain’s National Health Service. The BBC obtained a document from a regional medical group based in Sussex. The document, which sets out guidance for treating coronavirus patients in nursing homes, prompted one care manager to become “deeply concerned that residents and families are being pushed to sign” do-not-resuscitate forms:
The…guidance even provides a suggested script for GPs [general practitioners] to use in conversations with residents and families, part of which says ‘frail elderly people do not respond to the sort of intensive treatment required for the lung complications of coronavirus and indeed the risk of hospital admission may be to exacerbate pain and suffering.’
It goes on: ‘We may therefore recommend that in the event of coronavirus infection, hospital admission is undesirable.’
One care manager…[said] their GP had even told them ‘none of your residents aged over 75 will be admitted to hospital.’ They said they felt ‘shocked and numb’ to hear that. Another said: ‘We have been told flatly that it would be highly unlikely that they would be accepted into hospital.’
Put aside for a moment the fact that Britain’s system of socialized medicine has prompted at least some physicians to believe they should flatly refuse medical care to senior citizens (even though Health Secretary Matt Hancock denied such a policy exists). That such a system has also pressured family members to sign do-not-resuscitate orders for their loved ones speaks to the potential dangers of combining end-of-life counseling with the pressures faced by health care providers during a pandemic.
Preserve a Culture of Life
A content-neutral conversation among a doctor and a patient about constructing an advance directive, and what instructions to put in that advance directive, is one thing, but pressuring vulnerable patients to sign do-not-resuscitate orders during a global pandemic is quite another. Common sense, confirmed by the example from Britain, suggests that given the current medical crisis, the conversations could easily veer off-track from the former to the latter.
Advance care planning has its place in health care, but now seems an inauspicious time to push for its more widespread adoption. At present, our efforts should focus not just on preserving life, but on preserving a culture of life—and hurried conversations about end-of-life care in the current pandemic could undermine that culture significantly.