My father forgot how to swallow. Seven years after he was diagnosed with Lewy Body dementia, he reached the point where he couldn’t communicate with us. We hadn’t really talked about this kind of situation before. As his durable power of attorney and the registered nurse in our family, I decided not to have a feeding tube placed because I thought that was what he would have wanted. I have to live with that choice.
My story is not uncommon; an aging population and a pandemic mean that many more people face the dying of a loved one. How can we address their needs? By discussing it.
Yet, most of us are unprepared for making end-of-life decisions for loved ones. Though 92 percent of Americans believe it is important to talk about them, only 32 percent actually do it. Households least likely to do so include low income, low education, Latinos and African Americans.
Now is the time to engage in conversation with loved ones about your preferences for end-of-life treatment, also known as advance care planning, or ACP. Nurses and doctors must take the initiative to talk about ACP with their patients.
This is not happening: 95 percent of people say they want to talk about end-of-life choices with their provider, yet only 18 percent say they’ve had this conversation. Establishing ACP increases the likelihood of a patient’s wishes being followed by family members and clinicians and improves end-of-life care. It can improve the likelihood of a patient dying in their preferred place: Seven out of 10 adults say they would prefer to die at home, though 70 percent die in hospitals. Also, the burden of decision-making on loved ones can be significant without discussions to reference.
To help transform our culture of silence about death, the Conversation Project, a nonprofit organization, was created to address conversations around expressing end-of-life wishes. It can be used as a guide to start conversations and is free online.
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Health care has seen recent changes prompted by the pandemic that remove policy barriers around telehealth, resulting in a surge in demand for virtual care. For ACP conversations between Medicare beneficiaries and their providers, CMS-released waivers allow audio-only technology like telephones for provider reimbursement, thus increasing access to those with limited or no technology. Twenty-five states allow remote notarization and witnessing of documents. All states need to join the cause and update their notarization policies.
Discussing ACP may reduce health care costs and prevent unwanted aggressive interventions sometimes made by caregivers when they don’t know what to do. When facing terminal illness, some patients prefer palliative care and hospice.
Currently, only physicians, nurse practitioners and physician assistants can bill Medicare for reimbursement in ACP discussions. Expanding reimbursement opportunities for other health care professionals such as nurses and social workers to have ACP conversations could be beneficial to patients and physicians. This would provide more opportunities — especially for disadvantaged populations — to discuss their end-of-life preferences with a provider who charges a lower out-of-pocket fee.
As frightening as mortality is, having conversations about death can help us live consistently with our values and priorities. Circumstances can change, prompting re-evaluation of preferences. Documenting these wishes is critical.With more individuals broaching the topic and more ACP education in communities known to have disparities, and establishing supportive policies in communities known to have disparities, we can create more opportunities for others to align their values with their end-of-life treatment.
I wish I had talked with my dad about his end-of-life wishes. The guilt and uncertainty arising from the decisions I made for him have lingered for years. I wouldn’t want you to live with it if you could avoid it. Start now. Start today. Let’s talk.
Katherine Carroll Britt is a geriatric registered nurse, as well as and a Ph.D. student and vice president of the Association of Nurses in Graduate School at The University of Texas at Austin School of Nursing.
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November 05, 2020 at 02:00AM
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Commentary: End-of-life talks more urgent now - San Antonio Express-News
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