Psychiatry’s most influential diagnostic manual has a new disorder in its latest edition: prolonged grief.
Why it matters: The diagnoses could open up new ways of treating mental distress associated with grief and have that care paid for by insurers, the New York Times reports.
The addition of prolonged grief disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) comes at a time when many in the U.S. are grappling with loss related to the pandemic.
What they’re saying: The inclusion of the disorder “will mean that mental health clinicians and patients and families alike share an understanding of what normal grief looks like and what might indicate a long-term problem,” said APA CEO Saul Levin in a statement last fall about the move to add prolonged grief to the DSM.
But, but, but: The move was not without controversy, with some providers arguing the move categorizes a basic element of human emotions as a disorder and could lead to false positives, per the Times.
When Laura and David Gunner learned their 27-year-old son, Steven, had died from an opioid overdose, the couple were stricken by grief but not entirely surprised. They had struggled to help him overcome addictions and erratic behavior for more than a decade.
Seeking solace in the aftermath of Steven’s 2020 death, the upstate New York couple joined the Donor Sibling Registry, a website that connects sperm and egg donors and donor-conceived people. They hoped to make contact with the mothers and fathers of other children who, like Steven, had been conceived with sperm from a particular donor sold by a sperm bank in Fairfax, Va.
Donor 1558 had been described in his sperm-bank profile as a guitar- and hockey-playing college student with fair hair and brown eyes. The Gunners were eager to see glimpses of Steven’s features in photos of Donor 1558’s other offspring. They also wanted to let the parents of Steven’s half-siblings know that he had schizophrenia, a psychiatric disorder that causes hallucinations and delusions—and which can run in families.
“I felt obligated to tell the other parents,” Ms. Gunner said, adding that 18 half-siblings of Steven had been identified.
In interactions with the other parents, the Gunners learned disturbing new information about Donor 1558: The handsome, athletic, musical student had been diagnosed with schizophrenia and had died of an opioid overdose in 2018, at age 46. And when Ms. Gunner later connected with the mother of Donor 1558, she learned that he had once been hospitalized for behavioral issues. For unknown reasons, he didn’t disclose that on a questionnaire he completed before donating sperm.
“The grieving started all over again,” Ms. Gunner said. She believes Steven inherited a susceptibility to schizophrenia from his biological father.
Schizophrenia often runs in families, and having a parent with the mental illness raises a child’s risk for having it. But such offspring are “much more likely not to develop schizophrenia than they are to develop the illness,” said Dr.
Niamh Mullins,
an assistant professor of psychiatry at Icahn School of Medicine at Mount Sinai.
David and Laura Gunner believe their son Steven inherited a susceptibility to schizophrenia from his biological father.
Scientists have devised and discarded many theories about what causes schizophrenia.
Lynn DeLisi,
a professor of psychiatry at Harvard Medical School who studies the disorder, said scientists have now identified a few hundred genes—including ones involved in brain development—that collectively may raise the risk for schizophrenia. Even so, she said, “It is still a mystery how schizophrenia is transmitted.”
Researchers are studying possible environmental risk factors for schizophrenia, including heavy marijuana use and childhood physical or emotional trauma. In addition, efforts are under way to develop schizophrenia risk scores based on genetic data. Such scores aren’t yet ready for clinical use, according to experts. But if they do become available, Dr. DeLisi said, “it’s something sperm banks ought to consider.”
Treatment of infertility is a multibillion-dollar global industry, with hundreds of fertility clinics in the U.S. offering artificial insemination and in vitro fertilization. Despite its scale, the industry is loosely regulated.
Steven Gunner was an active, outgoing boy, and his parents had no indication he might develop schizophrenia.
Photo:
Laura Gunner
Clinics are required by law to track births resulting from IVF but not from artificial insemination, according to experts, so there is no reliable tally of how many children are born after being conceived with donor sperm. And while sperm banks ask donors to fill out health questionnaires, they don’t always verify the information.
Donors earn about $100 to $150 for each donation, according to
Michelle Ottey,
consulting lab director at Fairfax Cryobank, the sperm bank that sold Donor 1558’s sperm. The men are encouraged to alert sperm banks of significant medical problems that arise after donation but don’t always do so.
“There is no mechanism right now for ensuring reliability beyond the honor system,”
Dov Fox,
a professor at the University of San Diego School of Law and an expert on the fertility industry, said of the gap in information about sperm donors’ health. “Should we be able to count on donor health and safety like we do in the cars we drive and the food we eat? Or is making babies just a crapshoot, however you do it?”
The Gunners, onetime childhood sweethearts who raised Steven and his younger sister in East Aurora, N.Y., decided to push for change. They shared their story with their state senator, Patrick Gallivan, in November and encouraged him to craft legislation that would require reproductive tissue banks to verify health and other types of information provided by sperm, egg and embryo donors.
Some of the paperwork documenting Steven Gunner’s treatment, above, and a family photo album, below.
In December, Sen. Gallivan introduced the Donor Conceived Person Protection Act. As part of the proposed legislation, donors must waive confidentiality protections so their medical records from the past five years can be checked.
The Food and Drug Administration requires screening for sperm donors for infectious diseases like HIV and hepatitis. In addition, some sperm banks test prospective donors to see if they carry genes associated with rare hereditary diseases like cystic fibrosis and Tay-Sachs disease.
But there is no easy way to identify people at risk for schizophrenia, which is believed to affect about 1% of the population.
The Gunners had no indication Steven might develop the disorder. An active, outgoing boy, he loved listening to music—the Beatles were a favorite—and fishing with his dad. He was captain of his junior high football team. He enjoyed a close relationship with his sister.
Jars of sea glass at the Gunners’ home, and a memorial to their son that David Gunner installed.
But around age 15, Steven turned sullen. He lost himself in pot and psychedelics and was sometimes delusional. Steven got the schizophrenia diagnosis at age 19.
The Gunners tried desperately to help their son, providing emotional and financial support. But in the ensuing years, his parents said, Steven’s behavior grew even more erratic. He would stand in the yard wearing only a blanket, or go shoeless on snowy days. Once, after an argument with his father, Steven hopped a bus to California and was out of touch for so long that his parents thought he might be dead. He was in and out of drug rehabilitation and psychiatric hospitals and repeatedly jailed—once after he was involved in an assault.
Ms. Gunner shared some of these sad details with Donor 1558’s mother, whose identity came to light as the result of DNA testing of one of Steven’s half-siblings. In an interview, Donor 1558’s mother said she was devastated to see echoes of her son’s struggles in Steven’s, adding that she didn’t believe her son had tried to mislead the sperm bank. “When my son died, I thought it was over,” she said. “But it is not. This is his legacy.”
Steven’s death was heartbreaking, said Dr. Ottey of Fairfax Cryobank. In the decades since Donor 1558 donated, Fairfax has improved the process for testing and interviewing donors and collecting and vetting their information, she said, adding that email has also made it easier to receive regular health updates from donors. “We do our best to provide really good quality donors and good quality tested donor sperm,” she said. “The reality is nothing is an absolute.”
Sean Tipton,
the chief advocacy and policy officer for the American Society for Reproductive Medicine, said legislative efforts like the one the Gunners support could backfire. Not all medical conditions can be detected in donors, he said, adding that enacting such laws could raise the cost of fertility treatments. What is more, he said, the call for strict vetting of sperm donors’ self-reported health data spotlights a broader philosophical question about how much prospective parents can control when trying to conceive a child.
“You can know everything about somebody and that doesn’t tell you what their children are going to be like,” Mr. Tipton said.
Steven Gunner in December 2019, in a photo used for his obituary.
Photo:
David Gunner
The Gunners are still upset that Donor 1558 was taken at his word when he said he hadn’t been hospitalized. But they have come to terms with the contradiction inherent in their advocacy for laws that—had they been in force when they were trying to start a family—would have meant the son they adored would never have been born.
“We love Steven,” Ms. Gunner said. “But I saw the suffering he went through. I would never have chosen that for him.”
Steven Gunner died at the age of 27; his headstone in East Aurora, N.Y.
thought Jaime Milton was about to die. Her 48-year-old patient had skipped the dialysis that kept him alive. The day before, she called him six times before he picked up. He was gasping for breath and unable to complete a full sentence.
Dr. Hancock told him he might not live until the next day. He promised to go to the hospital. When he failed to arrive at the emergency room, she called the police. He wouldn’t go with the paramedics who came to his house.
Mr. Milton was on a downward spiral, and Dr. Hancock, a primary-care doctor in Bellingham, Wash., felt powerless to stop it.
A year earlier, at the start of 2020, Mr. Milton had been stable, years after Dr. Hancock helped him get off heroin. He had lost weight and completed treatment for hepatitis C. But, isolated and fearful of Covid-19, he had become anxious and began missing medical appointments and using drugs again. His health had declined rapidly—even though he never caught the viral disease.
“It’s just such a hopeless and helpless feeling,” Dr. Hancock said that day, as she weighed whether to send another ambulance to his house. “I literally do not know what else to do….I care deeply for this man, I’ve taken care of him for over five years. I don’t want him to die.”
When the pandemic started, Dr. Hancock believed it would be a calamity for her patients, many of whom suffered from health conditions that made them vulnerable. She was right, but not for the reasons she thought. In the end, the pandemic’s worst victims weren’t those who had worried her most in the spring of 2020. And they weren’t sickened by Covid-19 itself.
The biggest impact, which became clear only this year, came instead from other health problems that worsened amid the loneliness and stress of the pandemic.
A young girl developed crippling anxiety and compulsive behaviors, sometimes refusing to leave the house. A 65-year-old with schizoaffective disorder stopped taking his medication and had a series of run-ins with police that got him committed to a residential facility. A frail, homebound woman lost her caregiver and couldn’t find a replacement.
So far in 2021, Dr. Hancock has seen more than three times as many deaths among her patients as she did in all of 2020, and none have been from Covid-19.
The Wall Street Journal followed Dr. Hancock for 21 months, along with colleagues, patients, family members and others, to track the wider impact of the pandemic.
Her story shows how the virus put an enormous strain on a healthcare safety net that was already fraying. It left some patients’ non-Covid conditions untreated and placed impossible demands on caregivers like Dr. Hancock who struggle to fill the widening gaps.
The clinic where Dr. Hancock works, part of the nonprofit Sea Mar Community Health Centers, has contended with staffing problems and burnout as exhausted employees left their jobs amid the grind of the virus’s rise and fall and resurgence. Its mental-health service stopped taking new patients for months. Sea Mar, which is federally funded, serves as the primary-care provider for a large population of people who are on Medicaid or uninsured.
Dr. Hancock, an athletic 40-year-old who is the mother of two young children, cares for more than 1,900 patients. She often works past 9 p.m. in addition to being on call during off hours and is regularly double-booked during her 15-minute slots.
I care deeply for this man, I’ve taken care of him for over five years. I don’t want him to die.
Collateral impact from the Covid-19 pandemic is being felt around the U.S., and researchers say data show that patients with disadvantages, such as low incomes and limited access to healthcare, often bear the brunt. American life expectancy dropped sharply in 2020, with the biggest declines among the Latino and Black populations. The shift was driven largely by Covid-19, but also by diabetes and liver disease, among other causes. A study published this April in JAMA, the Journal of the American Medical Association, pointed to increases in deaths due to Alzheimer’s disease, heart disease and diabetes during parts of last year.
Dr. Hancock’s patients mirror what is happening nationally, said Donald Lloyd-Jones, chair of the department of preventive medicine at Northwestern University Feinberg School of Medicine and president of the American Heart Association.
“We’re going to be living with the ripple effects and the echoes of this pandemic for a long time,” he said. “We’re going to see not only more deaths in the ensuing years, we’ll see a lot more disease in people who are living.”
At the start of March 2020, Seattle was the epicenter of the pandemic in the U.S., with schools shutting down and a growing death count tied to the outbreak at a nursing home in Kirkland, Wash.
Bellingham, a city of around 90,000 located about 90 minutes north, still felt distant from the emerging crisis. But Dr. Hancock and others at Sea Mar, a two-story building with a worn-looking pink facade, were bracing for what seemed like the inevitable.
Dr. Hancock found the biggest impact of Covid-19 on her patients came from other health problems that worsened amid the loneliness and stress of the pandemic.
Dr. Hancock arrived there in 2013 after medical school at the University of California, San Francisco, a master’s degree and residency. She deferred her own goal of an academic career when her husband, a geologist, got hired at a nearby university.
Calm and meticulous, she quickly began drawing the most challenging patients, who often became so attached they refused to see other doctors. One periodically dropped off homemade piñatas. A chain-smoking older man crocheted a blanket after her daughter’s birth, its pink yarn bearing the baby’s full name and the strong scent of cigarettes. Dr. Hancock tracked their complex conditions in notes known among the staff for their lucidity and detail.
Mr. Milton was one of her earliest patients, and one of the sickest, with heart failure, gallbladder issues and diabetes in addition to his kidney trouble. During appointments he stared at the floor and mumbled answers to her questions. He had open sores from constantly picking at his rashy skin. He had started taking Vicodin prescribed after a back injury—he used to be a laborer—then OxyContin, then heroin. He had been dependent on various drugs for more than 17 years.
Dr. Hancock “didn’t judge me, she didn’t flinch,” Mr. Milton said. “A lot of doctors will judge you just right off the bat…but she didn’t, not at all.”
In 2017, he began taking Suboxone, a treatment for opioid dependence, and was able to get off heroin. “I’d tell her, ‘I’m having a hard time, will you just talk to me for a few minutes?’ And she’d just talk to me,” he said. Dr. Hancock saved his life, “by being there, no matter what.”
Gradually, he changed. He looked up when they spoke, and smiled for the first time that Dr. Hancock recalled. His clothes were clean, the picked-over scabs gone. He lost 145 pounds and stopped needing insulin. He quit smoking. Dr. Hancock urged him to try for a kidney transplant, a long shot given his history. In early 2020, before the coronavirus arrived, he was treated for a longstanding hepatitis C infection.
On March 10, 2020, an alert popped up on Dr. Hancock’s computer screen, with a headline from the local newspaper: “First case of novel coronavirus in Whatcom County confirmed by local health department.”
Dr. Hancock texted Shannon Boustead, another doctor at Sea Mar, whose mother had recently visited the hospital with a high fever and difficulty breathing.
“Was it your mom?” she asked.
“Yep. Holy shit,” he sent back. He had gone home to quarantine.
Patients largely stopped coming in for routine visits, which moved to phone and video. Dr. Hancock began wearing full scrubs and a mask. Terrified of infecting her husband, 3-year-old daughter and 6-year-old son, she stripped down each night before coming into the house.
“A large number of my patients are probably going to die in the next six months,” she said that March. “It’s a staggering thing to think about.”
Her first patient tested positive on April 4.
Dr. Hancock found her job, and her life, transformed. Her children’s day-care center and school shut down. She and her husband made arrangements with friends to share child care, including hiring a student to take care of Dr. Hancock’s daughter. That left her babysitting two 6-year-olds—her son and a friend—at least one day a week as she faced a growing flood of emails, questions and meetings about Covid-19.
Dr. Hancock made dinner at home with her daughter, Juniper, while her son, Calder, played with the dog.
On April 6, she wrote in a journal she occasionally kept. “I’m barely able to wrap my mind around what I need to do for tomorrow, let alone how I’m going to shepherd my kid through the rest of his kindergarten year…and not commit any medical errors in the process.”
One day, she took her son and his friend to wade in a shallow area of a nearby river. Exhausted, she nodded off, then started awake. The children were safe, but she was terrified that she might have put them at risk.
Another time, when she took them out for a bike ride and lunch, her son’s friend refused to eat his meal. After a long standoff, she threw out the ice cream cone she had bought him for dessert.
“I just felt like literally the worst person,” she said. “I just felt like, wow, I am so unhappy in this moment, this other kid is so unhappy, everything just sucks.”
She didn’t judge me… A lot of doctors will judge you just right off the bat… but she didn’t, not at all.— Jaime Milton, one of Dr. Hancock’s patients
Under lockdown, patients were needier than ever, anxiously confiding job losses, marital problems and other worries during virtual visits, as the routines that had kept them stable collapsed. Dr. Hancock became a lifeline for people whose lives had been upended. She created a list of resources for job help, housing and food aid to include with medical instructions. She wrote letters for disability-benefits filings. For one patient, she testified for a jail deferral on the basis of Covid-19 risk.
The lack of in-person visits presented new problems. Many who came in regularly now disappeared. To avoid in-person contact, the clinic wasn’t requiring such frequent urine screening tests for those on medication-assisted treatment for opioid dependence, making it hard to quickly detect when patients relapsed.
On July 7, 2020, Mr. Milton went to Seattle to meet with a kidney-transplant specialist. He had been to the emergency room only once all year and had shown no signs of heroin use. Dr. Hancock read the note from the specialist in her electronic medical record. “He is very motivated,” it said. “The patient expressed that he has turned his life around in the last three years.” The specialist wrote that she would recommend him for the kidney-transplant list.
To Dr. Hancock, it was a moment of hope in a dark time—here was one patient who had truly transformed his life.
In late August, Mr. Milton tested positive for methamphetamine. He started missing appointments. In October, he confessed to Rose Keller, a nurse at the clinic, who had texted him at Dr. Hancock’s request. He had used heroin, and he knew the cost. He could lose his spot on the transplant list.
“just DON’T use again!!” Ms. Keller wrote.
“I’m not going to, I CAN’T use again,” he replied. “I know I screwed up as soon as I used. I worked 3 years to get where I am and now this.”
Mr. Milton kept using heroin. His ex-wife and closest friend, Cindy Treadway, had relapsed too. He was frightened of the virus and isolated from other family members, including their daughter. He stopped outdoor activities he had loved, like fishing and crabbing in nearby Bellingham Bay.
“It got to be too much, the stress of all of it, afraid to go out,” he said. Ms. Keller kept trying to contact him and Dr. Hancock tried to schedule appointments, but he repeatedly skipped them. “I couldn’t look her in the face,” he said.
Dr. Hancock became a lifeline for people whose lives had been upended by the pandemic, creating a list of resources for job help, housing and food aid.
The autumn brought Dr. Hancock some glimmers of normality. On Nov. 12, her son returned to in-person school. Her daughter’s daycare had earlier reopened. “This is amazing, I don’t have anyone asking me for peanut butter crackers,” she said on her son’s second day in a first-grade classroom.
Covid-19 cases in Whatcom County ticked upward as winter began. Dr. Hancock was relieved that it wasn’t worse. The dozens of Covid-19 deaths she feared among her patients hadn’t materialized. In fact, she lost only three in 2020, and none died of Covid-19.
On Christmas Eve, she posted an exuberant picture on Facebook—herself, masked, holding up a white card. She had gotten her first dose of the Moderna vaccine. “I have never been so excited to get a shot, nor so grateful or relieved at the protection it will afford me, my family, and my patients,” she wrote.
After she got her second shot in January, Dr. Hancock managed to enjoy some moments of pre-pandemic life—a long bike ride with a friend, an outing with colleagues for margaritas. To celebrate her 40th birthday at the start of February, her husband had friends and family answer a questionnaire about her.
Her son’s contribution: “My mom’s good at doing stuff really fast. She’s really energetic. She can also be mischievous, which I like.”
Dr. Hancock’s piñata-making patient created a papier-mache SARS-CoV-2, its spikes rendered in pink, purple and blue tissue paper. She brought it home and hung it on a tree branch for her kids to hit with a stick.
The real virus was far harder to beat. Covid-19 case numbers surged to new heights in Whatcom in early 2021, despite the vaccines’ roll out.
At work, Dr. Hancock saw growing signs of the pandemic’s broader damage. Kids had gained weight, some crossing over into dangerous obesity. Though many had returned to at least some in-person school, she saw some struggling with depression and other psychological issues.
On New Year’s Eve, Dr. Hancock examined an 11-year-old patient she hadn’t seen in more than a year. The girl had been an organized, careful child, who took care of tasks such as filling out school forms and making grocery lists, according to her mother, Leah Botton.
During 2020, stuck at home, and hearing constantly of friends infected with the virus in the close-knit Miami, Fla., community where the family used to live, she had begun showing signs of anxiety and compulsive behavior. She would shake, and start knocking her hand against her chest, repeatedly counting. Sometimes she would have meltdowns, screaming, that her mother couldn’t soothe. She was scared to leave the house.
She had received some counseling, but the behavior hadn’t abated. Returning to in-person school had led to panic attacks.
Dr. Hancock offered to prescribe medication and suggested the family find a child psychiatrist—Sea Mar didn’t have one. She thought the girl might have obsessive-compulsive disorder. Mrs. Botton declined medication but agreed to seek a psychiatric evaluation.
On Feb. 1, Elizabeth Whittemore, an 85-year-old, wheelchair-bound woman with heart failure, told Dr. Hancock that she hadn’t left her apartment in a month. She had long been fragile and isolated—Dr. Hancock had once driven to her home to deliver a donated mattress—and recently her longtime caregiver had stopped coming because she was tending to a family member with health problems. The former caregiver’s daughter would buy Ms. Whittemore’s groceries and drop them off, keeping her from starving.
Elizabeth Whittemore, who was isolated without a caregiver during the pandemic, watched television at her apartment last month.
“We can’t abandon this lady,” Dr. Hancock said. She had a growing feeling of foreboding about patients who might be having problems that she didn’t know about. “I know bad things are happening to people,” she said a few days after the appointment with Ms. Whittemore. “I just don’t know all of them, because I can’t keep track of them all.”
She had a staffer reach out to a home-health agency to ask for a replacement caregiver, and the service said it would send someone to evaluate Ms. Whittemore.
After struggling to decide what to do for Mr. Milton on Feb. 26, Dr. Hancock ultimately sent another ambulance. The emergency medical technicians came up to his bedroom, Mr. Milton said. He told them, “Get out of here, I’m fine.” His doctor was really worried about him, one of them said. He sent them away. He didn’t feel like going to the hospital, he said.
The next day, he went to dialysis.
On March 17, when Dr. Hancock arrived at the clinic in the morning, Mr. Milton was sitting in the lobby. He had no appointment, and her schedule was full, but she got him an exam room.
I know bad things are happening to people, but I just don’t know all of them because I can’t keep track of them all.
He didn’t want to use heroin anymore, he told her. He believed he was killing himself and he didn’t want to die. He had been shooting up every day. He had a painful gallbladder attack that scared him. He was still nervous about Covid-19, but, “I knew I had to stop this, it was just getting out of control,” he said later. “I knew it was time.”
Dr. Hancock told him, “I’m really glad you’re here today. I’m glad you made it through.”
On April 6, Mr. Milton got his first Covid-19 vaccine shot. He stopped missing dialysis. His drug screens were coming back clean. He was planning to go crabbing again.
At the very end of a visit with Dr. Hancock on April 22, he mentioned a painful red spot on his skin. A test identified the cause: methicillin-resistant Staphylococcus aureus, or MRSA, a dangerous infection. It spread rapidly through his fragile body, despite antibiotics. On May 1, he was admitted to local hospital PeaceHealth St. Joseph Medical Center with septic shock, near death. The intensive care unit doctor told Dr. Hancock Mr. Milton would pull through, and he did. He went home May 10.
Home caregiver Esperanza Rosas helped Ms. Whittemore use a pulse oximeter.
The next day, May 11, a section called “Post Mortem” on the screen of Dr. Hancock’s electronic medical record was bolded, signaling there had been a new death among her patients.
It was a 68-year-old man, diagnosed with cancer and kidney failure, who had a heart attack and, in pain with little hope of recovery, chose to halt dialysis and move to hospice care. She hadn’t seen him since September and he had missed two appointments with her since.
Five days later, she got another death notice. This time, it was a 65-year-old woman who had died from liver failure due to alcohol use. An alcoholic who had been sober for more than a year, sustained by monthly visits to the clinic, she had switched to phone appointments during 2020. In January, she had stopped responding
The death was the sixth among her patients this year. Each time, Dr. Hancock called a family member or sent a card with a note of condolence.
The deaths had different causes, but Dr. Hancock saw a common thread. Many were fragile patients who hadn’t been getting the regular care that had kept them alive.
Many of Dr. Hancock’s patients are on Medicaid or uninsured.
On May 17, as she was sitting in her car, Dr. Hancock got a call on the clinic’s after-hours line about one of her patients, Bob Wysocki. His sister, Jeanne Koetje, was desperately seeking help for the 65-year-old, who had schizoaffective disorder and diabetes. Mr. Wysocki had been behaving erratically for weeks, seemingly not taking his medications and sometimes impaired by alcohol. He had attempted to illegally cross the border into Canada at one point and his car was seized.
On May 15, he had ended up in the local emergency room for the third time in the past few weeks and he had been swearing and throwing water. The designated crisis responder had said he should be admitted, but there were no beds, according to Mrs. Koetje and notes later reviewed by Dr. Hancock. He was allowed to leave.
PeaceHealth officials said that under state law, a designated crisis responder can’t put a hold on a psychiatric patient without an available bed. The hospital’s inpatient behavioral-health unit “runs near capacity all the time,” said Doug Koekkoek, chief physician executive of PeaceHealth. “So if you catch us on a particular day with a particular mix of patients, we may not have any availability.” A hospital spokeswoman declined to comment on Mr. Wysocki’s case, citing privacy rules.
Dr. Hancock was shocked at what she heard from Mrs. Koetje. Mr. Wysocki had been her patient for six years. A tall, gentle man, who enjoyed cooking and visits to a local casino, he had been stable for decades, living in his own mobile home. He had regularly helped with the care of his mother, who lived with Mrs. Koetje and her husband.
In the fall of 2020, he began smoking, after quitting six years earlier, soon going through more than a pack a day. In February 2021, he told Dr. Hancock that he was thinking of stopping his psychiatric medication. She urged him not to do it. She tried to get him in for appointments that spring, but he missed them.
On May 18, after hearing from Mrs. Koetje, Dr. Hancock called the local mobile mental-health crisis unit and asked if he could be evaluated, saying he was likely a danger to himself.
Photos of Bob Wysocki as a young adult, left, and fishing.
That same day, Mr. Wysocki ended up in the ER again after employees of a local grocery store found him lying on the ground and called 911.
The next day, May 19, Dr. Hancock saw Mr. Milton, with Ms. Treadway, his ex-wife. He had been home from the hospital for more than a week, but he hadn’t truly recovered. The MRSA infection hadn’t been cleared, and he had newly diagnosed heart-valve disease and liver damage. He was in constant pain, but he hadn’t gone back to heroin, he said. He didn’t want to die a junkie, he told her.
Dr. Hancock now believed that with multiple organ systems failing, Mr. Milton was unlikely to ever fully recover. She also felt Mr. Milton’s own attitude toward treatment had changed.
“Normally, every conversation you have when you walk into a doctor’s office is how are we going to make x, y, and z better,” she said. Now, she gently asked if he wanted to consider palliative or hospice care at his home, which would focus on easing the pain. It wasn’t a death sentence, she said. But if his aim was to improve the time he had left, it was likely the best option. Crying, Mr. Milton and Ms. Treadway agreed.
Ms. Keller called repeatedly to get a palliative-care provider to Mr. Milton’s house. Dr. Hancock called too, and was told by PeaceHealth that a visit would occur the week after Memorial Day, May 31. PeaceHealth didn’t schedule it for that week, though.
PeaceHealth said home palliative-care visits in Bellingham rose to around 300 in the first eight months of 2021, compared with 180 in all of 2020 and 226 in all of 2019. The hospital hasn’t been able to hire as many providers as it needs, said Dr. Koekkoek, and it generally takes weeks for a patient to be seen. A PeaceHealth spokeswoman declined to comment on Mr. Milton’s case, citing patient privacy rules.
On June 8, Dr. Hancock got a notice that Mr. Milton was back in the ICU with dangerously low blood pressure. He had fallen while getting out of bed, screaming when he hurt his back and injured his eye, which was filled with blood.
It was exactly the situation that Dr. Hancock tried to avoid—putting him back in the hospital, his pain worse than ever. “That’s such a failure,” she said. “I feel like we pulled out all the stops to get him the services he needed, and it hasn’t happened.”
Ms. Whittemore called an ambulance to her apartment because she was struggling to breathe.
That same week, in early June, Ms. Whittemore, the wheelchair-bound heart-failure patient, had called an ambulance to her apartment because she was struggling to breathe. “For months I didn’t have anybody to help me,” she said in an interview. “Los llamé como pude,” she said in Spanish, meaning, “I called them with what little strength I had.”
She also ended up in the ICU. Dr. Hancock and others at the clinic had been trying to get her a new caregiver since February, calling repeatedly, with Dr. Hancock at one point offering her personal cell number to a case manager at the Northwest Regional Council, an agency that arranges home care for Medicaid recipients like Ms. Whittemore.
This year, the agency has struggled more than ever to fill positions, said Dan Murphy, its executive director, who declined to comment on Ms. Whittemore’s specific case. “It’s the worst that we’ve seen,” he said, as the pandemic intensified existing issues. Some caregivers left the field or dialed back their availability, leading to longer gaps for patients, he said. It’s even harder to find caregivers who speak Spanish, Ms. Whittemore’s primary language.
Nationally, staff shortages have reached an all-time high during the pandemic, according to the Home Care Association of America, an industry group.
Dr. Hancock’s clinic was short-staffed, too. Out of 11 healthcare-provider positions, three were empty by early summer. The clinic manager left in March. The director of the medication-assisted treatment program left in May, partly to be closer to family who hadn’t been able to see his new baby during the pandemic. An interpreter who had been screening people entering the clinic was stressed by the work and left that same month. A manager of a small satellite clinic also quit, and her replacement, who lived in Canada, had her visa denied because of pandemic-related restrictions.
Dr. Hancock’s boss was retiring and Dr. Hancock was taking on a new role as a medical director. She had no open appointments for months, and couldn’t get through patients’ litanies of untreated conditions during their 15-minute slots.
Dr. Hancock’s clinic has been short-staffed during the pandemic, in line with a national shortage of medical workers.
During her daughter’s 5th birthday party one Sunday in June, she was paged seven times over two hours. She was out on a scavenger hunt in her neighborhood with 10 bike-riding kids when she took a call from an operator. A patient needed an urgent call back about his bloody discharge. Dr. Hancock waited until the scavenger hunt was over.
The clinic’s mental-health counseling service had three open positions for therapists by June. Therapists were leaving to go into private practice because new pandemic-era flexibility in billing and remote care opened up new opportunities, according to Claudia D’Allegri, Sea Mar’s chief behavioral-health officer.
One of two behavioral healthcare providers who could prescribe medications had a baby at home in Canada, then was blocked from returning to the U.S. because of pandemic restrictions. The remaining prescriber, overbooked, stopped seeing new patients unless they were in crisis or discharged from a hospital.
A Whatcom County report on the public-health impact of the pandemic, issued in July 2021, found “increased demand for behavioral healthcare and ongoing shortage of providers; limited services and long wait lists.” It said the average weekly demand for mental-health-crisis services provided by a local agency rose by more than 70%.
Dr. Hancock found herself writing prescriptions for desperate patients who she felt needed psychiatric expertise—lithium for a mother with a history of bipolar disorder, an antipsychotic for a schizophrenic man who showed up with a knife at the clinic, threatening to hurt himself if his lapsed prescriptions weren’t renewed.
She was also still trying to get help for the 11-year-old with signs of obsessive behavior. In months of calling around the state, the mother, Mrs. Botton, whose family is covered by a Medicaid plan, hadn’t found an appointment. “They’re like, ‘with Covid, we’re just overwhelmed, we just don’t have any vacancies right now,’ ” Mrs. Botton said. “That’s the line…it’s everyone.”
In May, desperate to get through to someone, Dr. Hancock called the psychiatric on-call consult line for Seattle Children’s Hospital. She said she was at her wits’ end and that the girl needed help right away. The psychiatrist mentioned an outpatient group for children with OCD, which was full.
The wait lists for psychiatric care for children are incredibly long, both for Seattle Children’s Hospital and elsewhere, said Alysha Thompson, a psychologist and clinical director at Seattle Children’s. Demand rose sharply at the start of 2021, she said, and “we just don’t have enough people.” A Seattle Children’s spokeswoman declined to comment on Mrs. Botton’s daughter’s case.
They’re like, you know, with Covid, we’re overwhelmed, we just don’t have any vacancies right now. That’s the line — and it’s everyone.— Leah Botton, mother of one of Dr. Hancock’s patients
At 4:30 a.m. on June 29, Mr. Milton went back to the ER in an ambulance, struggling to breathe. His kidneys, liver and heart were shutting down. That night in the hospital, he was hallucinating and tried to rip the IV from his arm. On June 30, he started vomiting blood.
A little after 1 p.m., he died. His daughter and Ms. Treadway were both with him at the end.
Ms. Treadway immediately texted Ms. Keller, the Sea Mar nurse: “He’s gone Rose!!!! My baby’s gone.”
Dr. Hancock was in the middle of seeing patients when Ms. Keller messaged her. That night, she called Ms. Treadway, who picked up the phone and began sobbing. “He was always afraid of dying in the hospital, and that’s exactly what happened,” Ms. Treadway said later in an interview.
Dr. Hancock felt sad, but also angry and frustrated. “If he hadn’t relapsed, if he hadn’t been under all this stress, and been properly monitored, and he had gotten a kidney transplant, he might have been on a completely different trajectory,” she said. “He might have had a 10- or 20-year life expectancy instead of a six-month life expectancy….Why didn’t he get that next chance?”
At the end, Mr. Milton had kept control over one thing that was important to him: There were no signs he had started using heroin again.
If he hadn’t relapsed, if he hadn’t been under all this stress… he might be on a completely different trajectory.
On July 7, a staffer in Dr. Hancock’s office reached out to inform Mr. Wysocki of a coming appointment. He had spent weeks in a residential mental-health crisis-recovery facility. The facility hadn’t shared its treatment or discharge plan with Sea Mar, leaving Dr. Hancock in the dark about his progress.
Instead of reaching Mr. Wysocki, the staffer got Mrs. Koetje, his sister. Eight days earlier, after he didn’t answer his phone or his door, Mrs. Koetje had crawled through a window of his home. Inside, she found his body, sprawled on the floor. A few days before, he had been discharged from the residential center with a list of medications and no home help. His cause of death wasn’t clear.
Dr. Hancock felt awful. She wondered, if she had known about the circumstances of Mr. Wysocki’s discharge, could she have scrambled to get him a home-health aide or some other help?
It turned out he had died on June 29, one day before Mr. Milton, who was now the eighth of Dr. Hancock’s patients to pass away in 2021. Two more patients have died since then, one from heart failure and the other from breast cancer, bringing the total to 10 by late November. In 2019, before the pandemic, she had lost only three, the same number as in 2020.
A photo of Mr. Wysocki with his mother among other mementos at the home of his sister, Jeanne Koetje.
Dr. Hancock is still trying to find a source of psychiatric care for the young girl. Her family recently pulled her out of in-person school because of her panic attacks and other symptoms.
Ms. Whittemore, the homebound patient, finally got a new home caregiver in July, but returned to the hospital and then was discharged to a nursing home. Recently, her longtime former caregiver has returned, which allowed her to leave the nursing home. Ms. Whittemore said she felt happier being home, in her care.
The staffing crunch at Dr. Hancock’s clinic and its mental-health service eased somewhat, with two new doctors coming on board in October and newly added mental-health counselors clearing the backlog of new patients. But some unvaccinated employees left when a state Covid-19 vaccination mandate for healthcare workers took full effect in October.
Ms. Treadway has been struggling with deep depression since Mr. Milton’s death, staying largely in his old bedroom with an urn holding his ashes sitting on the dresser. She often listens to “Whiskey Lullaby,” a song about a tragic couple who drink themselves to death, which she and Mr. Milton had liked to sing together.
She has kept in close touch with Dr. Hancock and Ms. Keller, who have pushed to get her mental-health care. At her first appointment with Dr. Hancock after Mr. Milton’s death, she started crying. Dr. Hancock asked if she could give her a hug. It would help them both, she said.
Washington’s Bellingham Bay, where Mr. Milton used to go crabbing, last month.
—Daniela Hernandez contributed to this article.
Write to Anna Wilde Mathews at anna.mathews@wsj.com
A patient of mine, a bright and thoughtful young man in his early 20s, came to see me for debilitating anxiety and depression. He had dropped out of college and was living with his parents. He was vaguely contemplating suicide. He was also playing videogames most of every day and late into every night.
Twenty years ago the first thing I would have done for a patient like this was prescribe an antidepressant. Today I recommended something altogether different: a dopamine fast. I suggested that he abstain from all screens, including videogames, for one month.
Over the course of my career as a psychiatrist, I have seen more and more patients who suffer from depression and anxiety, including otherwise healthy young people with loving families, elite education and relative wealth. Their problem isn’t trauma, social dislocation or poverty. It’s too much dopamine, a chemical produced in the brain that functions as a neurotransmitter, associated with feelings of pleasure and reward.
When we do something we enjoy—like playing videogames, for my patient—the brain releases a little bit of dopamine and we feel good. But one of the most important discoveries in the field of neuroscience in the past 75 years is that pleasure and pain are processed in the same parts of the brain and that the brain tries hard to keep them in balance. Whenever it tips in one direction it will try hard to restore the balance, which neuroscientists call homeostasis, by tipping in the other.
As soon as dopamine is released, the brain adapts to it by reducing or “downregulating” the number of dopamine receptors that are stimulated. This causes the brain to level out by tipping to the side of pain, which is why pleasure is usually followed by a feeling of hangover or comedown. If we can wait long enough, that feeling passes and neutrality is restored. But there’s a natural tendency to counteract it by going back to the source of pleasure for another dose.
No longer a working member of the royal family, Prince Harry has a new job: executive at a Silicon Valley startup.
The Duke of Sussex will become chief impact officer of BetterUp Inc., the fast-growing coaching and mental health firm, the company plans to announce Tuesday.
The role is the latest foray into business for the duke who, with his wife, Meghan Markle, relinquished roles as full-time working members of the British monarchy and have tapped into their celebrity with a string of lucrative deals in recent months.
“I intend to help create impact in people’s lives,” Prince Harry said in an emailed response to questions about why he’s taking the job. “Proactive coaching provides endless possibilities for personal development, increased awareness, and an all-round better life.”
In the BetterUp position, Prince Harry is expected to have input into initiatives including product strategy decisions and charitable contributions, and advocate publicly on topics related to mental health.
