At the beginning of March, the 2020 legislative session was in full swing. We had just testified at hearings in Maryland and New Hampshire and were taking the next steps in our campaigns to pass legislation in Massachusetts and New York. Newspapers across the country featured letters and op-eds from citizens urging their lawmakers to pass proposed assisted-dying legislation.
Two weeks later, the world looked very different. You’ll notice this edition of our news roundup does, too.
COVID-19 upended legislative sessions across the U.S.; by late March the majority of legislatures postponed or adjourned their sessions. Our work in statehouses ground to a halt, and news coverage of our issue declined as media outlets turned their attention toward covering the pandemic.
This roundup features some of the most thought-provoking news stories about death and dying in the midst of a pandemic, as well as the usual state-by-state updates and op-eds.
Death and Dying in the COVID-19 Era
When the pandemic first hit, we received many inquiries with related questions. A sampling: “How do I access a death with dignity law if I come down with COVID-19?” and “How can I make sure my advance directive gets honored in the COVID-19 era?”
We reached out to our generous network of nurses, palliative physicians, and medical ethicists about these complex medical The result: an article featuring expert responses to the most frequently asked questions we’ve received.
The article caught the attention of a reporter at KQED, the San Francisco Bay Area’s NPR affiliate station, who produced a story featuring Death with Dignity Executive Director Peg Sandeen.
From the piece:
“Social workers at Death with Dignity have been answering a steady increase in calls about the coronavirus. About 80% come from people who want these medications “just in case” the pneumonia they have proves to be the coronavirus, or so they can “be ready,” Executive Director Peg Sandeen said.
This kind of grassroots interest could influence future legislation. But Sandeen believes legislation that is proposed directly in response to the coronavirus will mainly address advance planning. “Because it’s all about this desire to have control at the end of life and to have whatever your wishes are, play out,” Sandeen said.”
The U.S. has a reputation for being skittish about death talk. In recent months, however, many Americans are suddenly talking about death a lot. The subject is unavoidable: news of rising death tolls and stories about those who’ve died are everywhere. Current events have led many people to contemplate about what it means to die and grieve when physical distancing is essential for safety.
We invited a grief specialist, a funeral director, the head of a death-positive organization, and a journalist to reflect on the practical and philosophical issues that COVID-19 raises. Taken together, the thoughts and advice they shared provide unique insight into how best to support the dying and honor the dead during this time.
Additionally, we shared wisdom and insights from former Oregon Governor Barbara Roberts, who reminded us that when it comes to grieving, “it’s OK to be weird.”
Below is a selection of articles that illustrate similar issues:
“Shortage of palliative care in USA could amplify suffering for coronavirus patients,” USA Today, 3/25/20
“Palliative care is right on the front line” of the coronavirus outbreak, Bernacki said. “We are going to be playing a very important role. People will be leaning on us.” Some experts worry that a long-standing shortage of palliative care professionals – who focus on the physical pain and mental and spiritual distress caused by serious illness – could leave many COVID-19 patients in distress.
Palliative care is vital when patients are suffering, especially for those near death, said Dr. Diane Meier, director of the Center to Advance Palliative Care, a nonprofit organization.
Specialist palliative care teams are “a scarce resource, just like ventilators,” Meier said.
“Allow COVID-19 patients the dignity of not dying alone,” Albany Times-Union, 4/3/20
“I want a death with peace, compassion, dignity and assisted support. I want to be connected to my family — at least virtually by an iPad, since some hospitals are not allowing family to be with COVID-19 patients, even those who are dying.”
Patients and their families face abrupt decisions about the kind of care they want, and time for sensitive deliberation is scarce. Conversations once held in-person are now over the phone, with all the nuances of nonverbal communication lost. The comfort of family at the bedside of the dying is all but gone. This is the new reality for those who practice palliative medicine.
Elizabeth Reiter is a mother of two who lives in Falcon. Right now, her family says she’s in the ICU with a serious lung infection that is not COVID-19 related. They have not seen her since April 29. COVID-19 has changed all of our lives. The separation of patients and their families might be the hardest change of all. Hospitals across the country are banning visitors. Keeping families away isn’t ideal, it’s to protect everyone.
“Pandemic has complicated end-of-life care,” HeraldNet, 5/20/20
“Even so-called good deaths have been harder to achieve in the age of the coronavirus.”
End-of-Life Planning During the Pandemic
The advent of the coronavirus has sparked a related conversation: the importance of end-of-life planning. People who had completed advance directives before the pandemic revised them with specific instructions about critical care in the context of COVID-19; many people who had never thought seriously about end-of-life care found themselves searching for guidance on how to start what can seem like an overwhelming process.
We created our own comprehensive guide to end-of-life planning. A free downloadable resource, The Life File Guide contains instructions for everything from organizing your digital passwords to making decisions about what you want to happen to your body when you die.
In the media, physicians and others made the case for proactive planning for the end of life.
Drs. Jessica Gold and Shoshana Ungerleider share their thoughts on the importance of talking about end-of-life care plans and preferences in the era of COVID-19.
“COVID-19 has taken away our control over many things, including, possibly, our final days. Perhaps through taking back control in even the smallest way, our own fears and anxieties about the unknown can be lessened.”
“Help Doctors Fight COVID-19. Fill Out an Advance Directive.”, Baltimore Sun, 4/7/20
“With unparalleled volumes filling our nation’s intensive care units, never has it been more important, or more helpful, to complete an advance directive. And (for many of you), you have never had more time to do so. Beyond just clinical guidance, they reassure the care team’s souls that when we must initiate invasive and often painful interventions that we are doing what you want.”
Do You Want to Die in an I.C.U.? Pandemic Makes Question All Too Real,” The New York Times, 4/24/20
“If older people have paperwork stashed in a drawer or safe, now is the time to unearth it and see if their instructions still reflect their values. If so, scan the document and send it to family members and doctors, Mr. Banach advised.
But for those who never got around to drawing up advance directives, appointing a decision maker — and telling that person what’s acceptable and what’s not — is ultimately more crucial. In emergencies, doctors probably won’t flip through documents to learn patients’ wishes; they’ll ask family or friends.”
“No time like the present: End-of-life plans and the pandemic,” WHIO-TV, 5/6/20
“Opinion: Patient care needs, mortality, inevitability are with us always,” Atlanta Journal-Constitution, 5/9/20
“Though patient-centered care planning is being highlighted amidst the threat of a healthcare emergency, it should be encouraged routinely as a tenet of high-value care and the hallmark of quality care. In its absence, our medical service lacks the lens with which we calibrate the greatest good for each individual.”
“COVID-19 forces end-of-life conversations for nursing home residents,” Portland Press Herald, 5/17/20
“In many ways, the spread of coronavirus has perhaps forced families of seniors to have conversations that they might not have been ready to have.
“A common misconception is that people think they can deal with it when the time comes,” said Fazeli.
Patients in long-term care facilities may have advanced directives, or living wills, but those don’t necessarily cover all decisions – including whether to consider a ventilator as a life-saving measure.”
“Setting minds and hearts at ease: a clinician’s guide to end-of-life care conversations,” McKnight’s Long-Term Care News, 5/18/20
“Ask most clinicians why they opted for a career in healthcare, and they’ll say they were driven by a desire to help others. COVID-19 reminds us that to fulfill this mission, facility clinicians must be willing and prepared to have an open dialogue with long-term care residents and their families about their goals, values, and wishes for care. They must also understand how long-term care teams can honor patients’/residents’ desires, especially near the end of life.”
The Latest from Maine
The Maine Death with Dignity Act went into effect last September. Since then, implementation has been moving forward apace. While providers are still learning to navigate participation in the law, patients have been able to access it to die on their own terms.
“1 Mainer chose ‘death with dignity’ in new law’s first 3 months,” Bangor Daily News, 5/4/20
The state’s Department of Health and Human Services released its inaugural report on the utilization of the law.
“I was kind of stuck”: Patient advocates report barriers to new Death with Dignity law,” WGME 13, 5/7/20
Our own Valerie Lovelace, who oversees our implementation efforts in Maine, explained to WGME why some patients were facing challenges in accessing Maine’s death with dignity law:
“The law is brand new,” Lovelace said. “This happens in every state. Once a law passes, it takes a little time for people to get comfortable with it, to understand how it all really works for a physician and a patient.”
“‘If there was a good way to go, this was it’: Portland native chose his own fate under new law,”, Portland Press Herald, 5/16/20
A beautiful story about one of the first people to use Maine’s law. We agree with the reader who penned a letter for the Press Herald entitled, “Story was deeply moving.”
“Letter to the editor: Death with dignity law works for Maine,” Portland Press Herald, 5/27/20
…And from California
A lovely story about the peace death with dignity brings to dying individuals.
“Sue’s Farewell: A Palo Alto end-of-life story,” Palo Alto Online, 3/6/20
“Sue’s husband, Ralph, offered a tender account of his wife’s use of California’s law… He decided to share his story to provide insight and dialogue on a topic that’s not always easy to talk about. Ralph said it was important to Sue that her family accept and support her choice, though some members might not have made the same choice for themselves.”
New Jersey’s Assisted-dying Law Safe from Legal Challenge
As often happens in the wake of an assisted dying law’s passage, opponents of New Jersey‘s death with dignity law mounted a legal challenge seeking to overturn it. As has happened with every challenge to a death with dignity law, they were unsuccessful.
“Dying patients deserve to use NJ aid-in-dying law, state says in arguing against lawsuit,” NorthJersey.com, 3/24/20
A doctor, pharmacist and cancer patient trying to overturn New Jersey’s aid-in-dying law are motivated by personal beliefs and their legal rights have not been violated, so their case should be dismissed, a lawyer for the state argued Tuesday.
Their lawsuit should end and the judge should uphold the state’s young law that allows doctors to prescribe terminally ill patients lethal medication, Deputy Attorney General Francis Baker said. This legal challenge, ongoing since August, has cast a shadow of uncertainty on patients and health care providers, Baker said.
“Judge Dismisses Latest Challenge to NJ Right-to-Die Law,” NBC Philadelphia, 4/3/20
The state Attorney General’s Office asked the court to dismiss the case because the plaintiffs did not have the proper legal standing to challenge the law that did not affect them.
The “plaintiffs suffer no harm. Nothing in the act requires (the) plaintiffs to participate as patients, physicians or pharmacists,” according to the decision.
New Mexico Candidates Weigh in on Death with Dignity
We are part of the New Mexico End-of-Life Options Coalition, a group of organizations that has been working for years to grow the death with dignity movement in their state.
So we were pleased to see a recent series in the Albuquerque Journal in which paper’s editorial board asked candidates for the Legislature, “Do you support or oppose updating the current prohibition in the law on assisted suicide in order to allow aid-in-dying under certain medical circumstances?” Read their answers.
Support for Death with Dignity Remains Strong in Massachusetts
The End of Life Options Act remains in play in Massachusetts. On May 29, the state Legislature’s Joint Committee on Public Health voted to advance the bill. Advocates connected to our grassroots partner organization, Western Massachusetts Death with Dignity, mounted a comprehensive letter-to-the-editor campaign, placing eloquent letters in newspapers across the state. Read them below.
- “Letter: ‘Death with dignity’ a humane option,” Salem News, 3/1/20
- “Letter: Choosing life is about quality and quantity,” Eagle-Tribune, 3/23/20
- “LETTER: End of Life Options Act Must Be Passed,” Worcester Telegram, 4/8/20
- “Death with Dignity,” Greenfield Recorder, 4/14/20
- “Letters: Doctor supports medical aid in dying,” Worcester Telegram, 4/20/20
- “Elizabeth Bristow: All humans deserve death with dignity,” Daily Hampshire Gazette, 5/3/20
- “End of Life Options Act: We all should have the choice of a peaceful, dignified death,” MassLive, 5/7/20
- “Letter: Support the End of Life Options Act,” Milford Daily News, 5/9/20
- “My Turn: Considering death in a time of pandemic,” Greenfield Recorder, 5/10/20
- “Letter: Legislature Must Pass End of Life Options Act,” Worcester Telegram, 5/11/20
- “Letter: In support of End of Life Options Act,” Lowell Sun, 5/17/20
- “LETTER: 3 elders back ‘Death with Dignity’ Law,” Newburyport Daily News, 5/16/20
- “Linda Matson: Clock ticking on ‘death with dignity’ bill,” Daily Hampshire Gazette, 5/22/20
- “In support of passing Death with Dignity law,” Greenfield Recorder, 5/28/20
- “INA’S TAKE: End of Life Options Act,” WickedLocal, 5/28/20
- “Editorial: Time to act on ‘death with dignity’ bill,” Daily Hampshire Gazette, 5/28/20
Around the U.S.
Advocates in states across the country continued to raise their voices in support of death with dignity laws.
“I’m an oncologist with terminal cancer, and I support medical aid in dying. Here’s why.” AZ Central, 5/30/20
A powerful piece by Dr. Tom Fitch, an advocate with our partner organization, Arizona End-of-Life Options. He writes, “As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.”
“My death, my choice,” Frederick News-Post, 3/3/20
“Participation in aid-in-dying is entirely voluntary for all. Anyone who does not want to take this option, they do not have to do so. All I ask is that they do not impose their beliefs and opinions on me. I hope the Maryland legislators are compassionate and smart enough to make this option available to those of us who wish it.”
“Maryland will again try for a death-with-dignity law. It’s probably time to accept it.” The Washington Post, 3/12/20
“I hope legislators remember that denial of a dying person’s ability to have some say over how and when they will die is tantamount to torturing that person, forcing them to suffer the physical pain and/or mental anguish of having to wait.”
“Letter: Support Death with Dignity,” Concord Monitor, 3/8/20
“Pass the Medical Aid in Dying Act,” Adirondack Daily Enterprise, 3/9/20
“Passing the Medical Aid in Dying Act would give New Yorkers what the majority of us want: expanded end-of-life care options, allowing the dying person the sole authority to self-administer the medication when nothing else provides relief, and leaving this deeply personal decision to the dying person, their family, and their doctor.” -Phyllis Sinclair, RN
“Dying Patients Need Relief from Pain,” Albany Times-Union, 3/21/20
A retired hospice physician debunks claims by opponents of aid in dying, and advocates for passage of New York’s Medical Aid in Dying Act.