Empty hospital bed.

Addressing Health Inequities in End-of-Life Care in the Era of COVID-19

By Megan J. Shen

Inequities in end-of-life care have been exacerbated by the COVID-19 pandemic, but have yet to receive the same level of attention as some other health disparities brought to the fore recently.

Quality end-of-life care is focused on reducing human suffering and aiding patients in receiving support during the dying process.

Traditionally, poor quality end-of-life care involves the overtreatment of patients, as in the case of continuing to treat incurable cancer aggressively. However, COVID-19 has introduced new challenges in achieving quality care at the end of life. Specifically, it is now more challenging to reduce human suffering at the end of life because of limitations in providing access to two critical resources: (1) medical care that can relieve physical suffering in the dying process and (2) support, such as loved ones, as well as needed psychological, spiritual, and physical support to cope with the existential threat of dying. COVID-19 has made access to both of these a greater challenge for underrepresented minorities.

Read More

hospital equipment

Taking Control During COVID-19 Through Advance Care Planning

By Stephanie Anderson and Carole Montgomery

A deep divide exists in the American health care system between patients’ values and the care they receive.

Let’s start with a story – Marcus was in his mid-40’s when he underwent high-risk heart surgery during which he suffered a brain injury. Afterward, the surgeons at first reassured his family that the surgery itself was successful (his heart was working fine) in spite of his brain injury.

Unfortunately, after many days in the ICU he remained unconscious and was not able to get off the ventilator. Specialists told the family that his brain injury was severe, and he would likely not be able to carry on a meaningful conversation or live independently ever again.

Read More

Busy Nurse's Station In Modern Hospital

A Physician Reflects on COVID-19 and Advance Care Planning

By Shoshana Ungerleider

It was the end of a 24 hour shift in the ICU when the 85-year-old woman I had just admitted with end stage heart failure began having trouble breathing. While I knew she did not desire “aggressive measures” taken to prolong her life, I wondered what that meant in the context of this moment. Even though I was a young medical resident, I knew without swift intervention, she would not be able to survive the night. I ran into the waiting room to search for her son, her medical decision maker, but he had gone home for the night.

I returned to the bedside to see that my patient was tiring as her breathing was becoming shallow and fast. She was awake and I sat down to explain why she was feeling breathless. I explained that her condition had rapidly worsened and asked if she had ever considered a scenario where she may need a breathing tube. She had not. As her oxygen levels dropped, it quickly became clear that we had to act. What wasn’t clear to me was whether this frail woman would actually survive this hospital stay, and if she truly understood what intubation and mechanical ventilation were and whether this would cause her to suffer.

Read More

empty hospital bed

The COVID-19 Pandemic Highlights the Necessity of Advance Care Planning

By Marian Grant

The COVID-19 pandemic has laid bare the importance of clearly expressing personal wishes for medical care in emergency situations.

Health systems and providers across the country are seeing how important it is that all of us discuss our medical goals in advance. Not having one’s medical goals known in advance puts a burden on frontline clinicians and loved ones, because it leaves important medical decisions up to them.

You can and should speak up about the kind of medical care you would want, and tell doctors what matters to you. You also should tell those who matter most to you what you’d want if you couldn’t make decisions for yourself.

Read More

empty hospital bed

COVID-19 Underscores Racial Disparity in Advance Directives

Cross-posted from The Hastings Center Bioethics Forum, where it originally appeared on May 26, 2020. 

By Stephen P. Wood

During a recent shift, I was the primary provider for a man in his 70s who was brought in by ambulance with respiratory failure. He had been sick for two days with a fever and a cough, weak and short of breath. The chest x-ray performed at his bedside revealed the diffuse, fluffy markings that are familiar signs of pneumonitis from COVID-19.

After giving him oxygen to improve his breathing, treating his fever, and running tests that are standard for COVID-19 patients, I clicked the admission button to cue him up for a bed. My patient and I then discussed goals of care and had a frank discussion about advance directives. He did not have an advance directive, but he knew he did not want to be resuscitated. He did not want to be put on a ventilator, go on dialysis, or receive artificial nutrition. He was quite clear and did not hesitate about these decisions. We signed the advance directive and filed it away in his chart.

Read More

Empty hospital food tray with plate and glass

The Ethics of Dementia Advance Directives for Receiving Oral Food and Water

By Beatrice Brown

Last month, Kaiser Health News (KHN) told the story of Susan Saran, a woman diagnosed with frontotemporal dementia. According to KHN, Saran consulted a lawyer and signed an advance directive for dementia after experiencing two brain hemorrhages in 2018. The document directs caregivers to withhold hand feeding and fluids at the end of life for those with advanced dementia. However, her continuing care retirement community told her that they could not honor her wishes because “the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.” As noted by Dr. Stanley Terman, “Even when people document their choices – while they still have the ability to do so – there’s no guarantee those instructions will be honored.”

According to KHN, these dementia advance directives are “a controversial form” of voluntarily stopping eating and drinking (VSED), wherein a terminally ill patient who still retains mental capacity refuses food and water to hasten their death. VSED is considered by many to be a morally acceptable extension of a patient’s right to refuse treatment, a right codified in the landmark cases of Karen Ann Quinlan and Nancy Cruzan. The ethical question here, then, is whether the refusal of hand feeding and fluids requested in dementia advance directives is another form of VSED and is thus morally permissible, or if this refusal is ethically distinct from VSED and is perhaps morally prohibited. Read More

Blurred image of a patient in critical condition in the ICU ward.

“An Act Improving Medical Decision Making:” An Argument in Favor of MA House Bill 3388 and Senate Bill 843

By Beatrice Brown

On September 10, 2019, the Joint Committee on Judiciary at the Massachusetts State House heard testimony regarding House Bill 3388 and Senate Bill 843, “An Act Improving Medical Decision Making.” The Massachusetts Medical Society (MMS) was among those testifying in favor of the act. As noted by MMS, Massachusetts is one of only five states in the U.S. that does not have a default surrogate consent statute for incapacitated patients without a health care proxy. The intent of a default surrogate consent statute is “to provide legal authority for health care decision-making through a non-judicial rule of law where no guardian or agent had been appointed.”

Without such a statute in place, this means that a patient who is incapacitated and has not declared a health care proxy must await treatment while a guardian is appointed by the courts. This may be a lengthy, time-consuming process that physically drains hospitals’ resources and emotionally drains families. By contrast, these default surrogate consent statutes establish a list of surrogates that can be appointed by physicians to make decisions in lieu of the incapacitated patient. For example, in the Massachusetts bills, the following persons are listed as candidates who may be appointed as surrogates: the person’s spouse, unless legally separated; the person’s adult child; the person’s parent; the person’s adult sibling; and any other adult who satisfies the requirement of subdivision seven of the bill which states, “The person’s surrogate shall be an adult who has exhibited special care and concern for the person, who is familiar with the person’s personal values, who is reasonably available, and who is willing to serve.” Read More

Photograph of a doctor holding a headset sitting in front of a laptop

Navigating Sensitive Hospital Conversations in the Age of Telemedicine

By Adriana Krasniansky

On March 5, 2019, a terminally ill patient from Fremont, California, learned that he was expected to die within several days. The doctor who delivered the news did so via a robotic video teleconferencing device. 

Ernest Quintana, a 79-year-old patient with a previously-diagnosed terminal lung condition, was taken to the Kaiser Permanente Fremont Medical Center emergency room after reporting shortness of breath. His 16-year-old granddaughter, Annalisia Wilharm, was with him when a nurse stopped by and said that a doctor would visit shortly to deliver Mr. Quintana’s results. 

The video below, recorded by Ms. Wilharm, shows Mr. Quintana’s consultation with a critical care doctor through an Ava Robotics telepresence device—in which the doctor explains Mr. Quintana’s rapidly worsening condition and suggests transitioning to comfort care. Ms. Wilharm and her family chose to share the video with local media and on Facebook, inciting a debate around the legal and ethical challenges of using telemedicine in critical care conversations. 

Read More

Photo of a stethoscope, gavel, and book

The End of Dramatic Legal Saga: French Patient Vincent Lambert has Died

By Audrey Lebret

There are few cases as publicized in France as the story of Vincent Lambert, a patient in a vegetative state whose fate deeply divided his family. On June 28, 2019, the Cour de Cassation signed the last substantial decision of the Vincent Lambert case, after six years of proceedings. The patient died on July 11, 2019.

The facts

In 2008, Vincent Lambert was involved in a traffic accident that left him in a quadriplegic state and suffering from massive brain trauma. In 2011, a medical evaluation described his state as minimally conscious. Doctors tried to establish a code of communication to which he was never responsive. Nonetheless, doctors tracked some behaviors that they interpreted as an opposition to treatments and a refusal to live (Conseil d’Etat judgement, at 20). In 2013, his doctor initiated a procedure with the agreement of Mr. Lambert’s wife in order to interrupt the treatments. That initiated a lengthy court battle.

Read More

Hands of a young doctor wrapping around the hand of an elderly person

C-TAC and Petrie-Flom Center Convene Leaders to Explore New Approaches for Serious Illness Care

By Stephen Waldron

Health care leaders gathered at Harvard Law School on April 26 to discuss opportunities to redesign care delivery for people with serious illness. These efforts are informed by the shift to value-based care, which has been championed by innovators in the advanced care movement.

The event was part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Coalition to Transform Advanced Care (C-TAC). Read More