One of my most stinging failures as a physician happened soon after internal medicine residency. I was caring for an elderly man recently diagnosed with advanced colorectal cancer. When I met with the patient and his wife, the most important thing they stressed was that he didn’t want to die at the hospital. The patient emphasized avoiding uncomfortable treatments, and that if death was near, he wanted to be at home.
My training in the early 1990s did not prepare me to provide good palliative and end of life care. My patient was seeing an oncologist in San Diego, an hour away, and I left on several weeks’ vacation during which things for my patient took a turn for the worse. When I returned, he was back in the hospital for an intestinal blockage. He quickly deteriorated from complications following surgery and died in the intensive care unit.
Today, I find myself serving as a primary care and palliative care physician in Palo Alto, California. Although I hope society’s worst fears are never realized, there are reasonable scenarios under which many hospitals around the United States may soon be taxed by more critically ill patients than they can handle. This could create overwhelming demands for too few ventilators and hospital beds. How should a person prepare?
What do you fear? What is important?
One answer is that all of us and our loved ones need to have conversations about what matters most. Last week a patient evaluated for mental health follow-up wanted to ask about a cough and this week a colleague spoke to a patient who called to ask about organ donation. Anxiety about acquiring COVID-19 infection is palpable, and both of these individuals were deeply worried about their own risks.
ER doctor:Your end-of-life care plan can help save time and lives amid coronavirus
Being honest about worry can foster reflection and conversations about goals for our care. Questions to ask include, “What are you most concerned about if you are facing a COVID-19 infection?” “What are you most afraid of?” “What is most important?” “What if an artificial breathing machine were being considered?” “Have you had any thoughts about care not being available?”
Based on our own values and life experiences including previous losses suffered by loved one, some of us coming to terms with these choices may not choose to undergo ventilator support, even if it’s available, but making that decision is not enough. As my failure as a physician demonstrates, a treatment decision has to be accompanied by a concrete plan and communication to execute it.
Ensuring your goals can be followed often begins appropriately with documenting an advance directive. In an emergency situation, an advance directive for someone living at home needs to be augmented by out of hospital orders. Each state has different specific terms for such orders, but they allow paramedics or other providers on the scene to forgo resuscitation.
Another key issue is having a discussion with those who are part of our support system. When asked, many patients haven’t told those closest to them about their goals, even when they are named as decision makers on a directive or out of hospital orders. Making close family members and friends partners in our goals is especially important when making plans to be comfortable at home.
Friends and family play vital roles
Even normally in hospice, family members or friends play key roles. They may give medications, provide personal care, maintain a comforting environment, and provide other support. Studies of the later months of life find that family members and friends spend dozens of hours weekly providing care. Hospice relieves that burden but, much care, most of the time, is still provided by others.
Harvard epidemiologist:Coronavirus ‘is the Big One … I hope never to see bigger’
In some communities, where access to care might get very tight, making plans in case hospices are unavoidably delayed may be crucial. Under extreme circumstances, hospices may struggle with a flood of new patients, or to find protective gear to serve persons with COVID-19 infections. One consideration is having emergency medications on hand and instructions on how to use them to alleviate shortness of breath.
Taking such steps will be necessary to meet the goals we might have. Contrary to conventional wisdom, pneumonia is not “the old man’s best friend.” Shortness of breath is often frightening, although there are ways to alleviate it, especially in emergencies. In addition to reflecting on and documenting your goals, discussing them with loved ones, and planning with your provider for needed support will also be as crucial as any preparations you might make.
Dr. Karl A. Lorenz is a general internal medicine and palliative care physician, and Section chief of the VA Palo Alto-Stanford Palliative Care Program. He is currently a professor at the Stanford University School of Medicine.