When an Estranged Relative Dies, Some Face Grief, Regret and Relief

Some have regrets over unfinished business. For others, the end of an unhappy and complicated relationship just comes as a relief.

By Caitlin Kelly

When the phone call came from my mother’s nursing home, I knew there could be only one reason. She had died at 85, sitting in her armchair watching television.

I was her only child, but we hadn’t spoken, or even tried to be in touch, in the previous decade. She was a Mensa member, a world traveler of independent means and a voracious reader. She was also a person with bipolar disorder and alcoholism. Worn out by decades of dealing with both, which meant years of chaos and broken plans, I had finally, reluctantly, exhaustedly, just given up trying to have a relationship.

For every anguished iPad farewell made to a dying Covid patient, or during another Zoom funeral or someone dearly loved and mourned, there are many people like me, estranged from their parents, children or siblings when those family members pass away. And because of this, we may not grieve the same way people typically expect. For some, the end of an unhappy and complicated relationship just comes as a relief.

When Karl Pillemer, a gerontologist at Cornell University who wrote “Fault Lines: Fractured Families and How to Mend Them” surveyed 1,340 Americans in 2019, he found that 27 percent of them were estranged from a family member. “Shame, isolation and embarrassment pervade family estrangements,” he wrote.

Now working on a new study of how estrangement affects grief, Dr. Pillemer sees among those studied “unfinished business” and “bereavement-related regrets.” “They have more complicated grief,” he said in an interview. His advice, when possible, is to consider reconciliation, especially if death is expected or imminent, asking the question: “Will I feel better if I do this?” He said “anticipated regret” is very common. “People talked about it a lot. Will I miss the chance to reconnect?”

For Harriet Brown, author of “Shadow Daughter: A Memoir of Estrangement,” her mother’s death at 76 was emotionally complicated. Ms. Brown had left home at 16 and never returned. But the day we spoke, the ninth anniversary of her mother’s death, Ms. Brown said she had cried. “She wasn’t a good mother to me. I never felt mothered, so it’s a different kind of grief about what is never going to happen. I miss what I longed for and that I never had,” Ms. Brown said.

She did try to visit her mother in the hospital, where she was sedated and on a ventilator, hoping to offer moral support to her father and sister. But when Ms. Brown saw her mother again she “felt such terror” instead, realizing anew why she was estranged, and glad of her decision to end the relationship.

Kaitlyn Luce, an artists’ manager in Nashville, lost her father, then 64, in October 2015, when she was 25. He had suffered a massive stroke and was in a Florida hospital. “A 15-hour drive is a long time to think about what you’re going into,” she said. Her father, who had alcoholism and bipolar disorder, had been physically and verbally abusive to her for years, Ms. Luce said. “I hadn’t been speaking to him for about a year and had told him I didn’t want a relationship with him. I really couldn’t put up with it anymore.”

She went to his hospital room, but didn’t see or speak to him. “I immediately broke down,” she recalled. “One of the things I tried to figure out was how I was going to say goodbye to my dad since the possibility of him coming through this was slim to none. I didn’t have a good answer.”

Ms. Luce and her brothers and a paternal aunt did hold a funeral for her father, a former D.J., gathering up photos and playing some of his favorite songs. “What I wanted to remember was when life was good, when times were fun,” she said. “What felt right to us was remembering the times that were really good and he was really, really fun. It did make it easier.”

She has done “a lot of therapy” since his death and still struggles with “a sense of confusion” about how to process his death and her feelings about him. “He couldn’t help himself because he was so sick,” she said. “He was doing the best with the tools he had.”

Yet, “overall,” she added, “a very large feeling I had was a sense of relief. I’d spent all 25 years of my life holding my breath, waiting for the next unpredictable thing he would do or say.”

Estrangement splinters families, sometimes even more so after death. For the British therapist Bernadette Wright, her father’s death came as a relief. She said he had long been “a tyrant, very abusive in every way.” She left home at 18 and moved to Germany, never returning. More than 30 years later, she was on vacation in Spain when her mother called to tell her that he had died. His funeral was announced on the radio in the small town in Ireland where he was born.

“It was difficult for my mother because she was there without her four children,” Ms. Wright said. “A friend of his gave his eulogy. People thought we were absolutely dreadful that we didn’t come. We begged my mom to keep it low-key as no one knew us anyway. We were all brought up in London.” Her mother was angry and embarrassed by their absence, she said, but their self-protection mattered more.

“People have this obsession with forgiveness,” Ms. Wright said. “You can forgive, but you don’t have to forget. You don’t have to have that toxicity back in yourself.” Those who have never been estranged often judge those who are, and very harshly, Ms. Wright added. “But you haven’t lived my life. It made me ill every time I saw my father.”

Ms. Wright has, though, mourned her father, feeling “huge grief,” but less for the man he was than the loving parent she never experienced. “That’s what you’re grieving for. The childhood you never had, the mother you never had, the father you never had.”

Funeral directors also face their own challenges when someone estranged dies, said Kari Northey, a funeral director in Wayland, Mich., with 18 years’ experience. She has seen unattended funerals and their aftermath. “Every funeral home has a shelf of unclaimed ashes. Unclaimed individuals are becoming a bigger situation. Even if they pay for the cremation, they never pick the ashes up.”

Ms. Northey urges those estranged at death from a loved one to “take a moment of looking at that person with fondness. That one good moment is what you grieve. Everyone is a gleam in someone’s eye at some point. At some point in their life, they were a good person.”

It’s helpful to see a body or coffin, she added. “Seeing is believing. If you don’t get that, it can hold back a lot you need to process through.” But if an angry relative who is the one who is paying for a funeral refuses to allow others access, “we end up as gatekeepers,” Ms. Northey said. “We sometimes have to be the person inflicting hurt. We’re constantly saying no when we want to say yes.”

Even as vaccinations are helping to curb the pandemic, there are still hundreds of patients dying of Covid every day, often alone. Dr. Pillemer suggested that hospice workers, chaplains, doctors and palliative care givers ask each one: “When did you last see your child or sibling or parent?”

He added, “There needs to be professional level training since no one wants to talk about estrangement, we need more professional awareness and education. There’s a great silence around the subject.”

Joshua Coleman, a psychologist in private practice and senior fellow with the Council on Contemporary Families, suggested finding a way to “make sense of these conflicted feelings.” His new book, “Rules of Estrangement,” is a guide for parents whose adult children have cut them off, the most common pattern of estrangement, he said.

“There’s a temptation to feel really misunderstood and hurt and also judged by society,” he said. “People have to reckon with it and make sense of why they have chosen to become estranged when they were treated in a cruel, excluding or hostile way by their family. You need to develop your own strong narrative and have people in your life who support that. Nobody who hasn’t been estranged really knows what it’s like.”

I fled my mother’s care at 14, frightened of her mental illness and worn out from coping alone with her breakdowns. I went to live with my father and I never lived with her again. Experience had taught me I couldn’t feel safe with her. In later years, living by choice many thousands of miles apart in different countries, we did enjoy some calm and loving visits, for which I am grateful.

In many ways, I am still very much her daughter — bold, adventurous and curious. Those are the memories I am glad to carry.

Complete Article HERE!

When Patients Choose to End Their Lives

For some, the decision to die is more complicated than a wish to reduce pain.

By Jane E. Brody

At a time when so many are dying against their will, it may seem out of sync to discuss the option of having a doctor help people end their lives when they face intolerable suffering that no treatment can relieve.

It’s less a question of uncontrollable physical pain, which prompts only a minority of requests for medical aid in dying, than it is a loss of autonomy, a loss of dignity, a loss of quality of life and an inability to engage in what makes people’s lives meaningful.

Intractable suffering is defined by patients, not doctors. Patients who choose medical aid in dying want to control when they die and die peacefully, remaining conscious almost to the very end, surrounded by loved ones and able to say goodbye.

Currently, nine states and the District of Columbia allow doctors to help patients who meet well-defined criteria and are on the threshold of dying choose when and how to end their lives. The laws are modeled after the first Death with Dignity Act, passed in Oregon in 1997.

A similar law has been introduced repeatedly, and again this January, in New York. Last year, Maryland came within one vote of joining states that permit medical aid in dying. Diane Rehm, the retired National Public Radio talk show host, says in a new film she created on the subject, “Each of us is just one bad death away from supporting these laws.”

Most people who seek medical aid in dying would prefer to live but have an illness that has in effect stripped their lives of meaning. Though often — and, proponents say, unfortunately — described as “assisted suicide,” the laws hardly give carte blanche for doctors to give people medication that would end their lives quickly and painlessly. The patient has to be terminally ill (usually with a life expectancy of less than six months), professionally certified as of sound mind, and able to self-administer the lethal medication without assistance. That can leave out people with advanced dementia or, in some cases, people with severe physical disabilities like those with amyotrophic lateral sclerosis (A.L.S., or Lou Gehrig’s disease).

A desire to broaden access to medical aid in dying prompted Ms. Rehm to create the film “When My Time Comes” to air on public television starting April 8. (A free livestream of the film preview and discussion will be available on April 8, at 12:45 p.m. Eastern, at weta.org/WhenMyTimeComesFilm.) The film follows the 2020 publication of Ms. Rehm’s book of the same title, subtitled “Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.” Both the book and film were inspired by the protracted death in 2014 from Parkinson’s disease of John Rehm, her first husband, to whom she was married for 54 years.

Mr. Rehm, then living in Maryland, could no longer stand, feed or toilet himself, but his doctors could not legally grant his plea to help him die quickly. Instead, the only recourse he was given was to refuse all food, liquid and medication, which ended his life 10 days later.

This is still the only option doctors can legally “prescribe” for the overwhelming majority of Americans who live in the 41 states that have yet to pass a medical aid-in-dying law. The approach does indeed work, but it’s not an acceptable choice for many dying patients and their families.

Ms. Rehm said her goal is that no patient should have to suffer the indignity her husband experienced at the end of his life. She described his death as “excruciating to witness,” even though after about two days the absence of food and water is usually quite tolerable for the patient.

Dr. Jessica Nutik Zitter, a palliative care physician at Highland Hospital in Oakland, Calif., said in an interview, “The concept of medical aid in dying is gaining acceptance, but it takes a while for people to be comfortable with it. Doctors are trained to just keep adding technology to patient care regardless of the outcome, and withdrawing technology is anathema to what we’re taught.”

As a result, doctors may convince dying patients and their families to accept treatments “that result in terrible suffering,” said Dr. Zitter, author of the book “Extreme Measures: Finding a Better Path to the End of Life.” In her experience, a fear of losing control is the main reason patients request medical aid in dying, but when they have access to good palliative care, that fear often dissipates.

Only a third of patients who qualify for medical aid in dying actually use the life-ending drugs they get, she said, explaining that once given the option, they regain a sense of autonomy and no longer fear losing control. In a study of 3,368 prescriptions for lethal medications written under the laws in Oregon and Washington state, the most common reasons for pursuing medical aid in dying were loss of autonomy (87.4 percent); impaired quality of life (86.1 percent), and loss of dignity (68.6 percent).

Of course, many doctors consider medical aid in dying contrary to their training, religious beliefs or philosophy of life. Dr. Joanne Lynn, a geriatrician in Washington, D.C., who is not a supporter, said the emphasis should be on providing better care for people who are very sick, disabled or elderly.

“We should resist medical aid in dying until we can offer a real choice of a well-supported, meaningful and comfortable existence to people who would have chosen a medically assisted death,” Dr. Lynn said. “There’s currently no strong push for decency in long-term care. It’s not a real choice if a person’s alternative is living in misery or impoverishing the family.”

Barbara Coombs Lee, president emerita of Compassion & Choices, a nonprofit organization in Portland, Ore., that seeks to expand end-of-life options, said, “The core principle of medical aid in dying is self-determination for someone who is terminally ill.”

Still, Ms. Lee, the author of “Finish Strong: Putting Your Priorities First at Life’s End,” said that there are options for the majority of dying patients who still lack access to an aid-in-dying law. In addition to voluntarily refusing to eat and drink, everyone has the right to create an advance directive that stipulates the medical circumstances under which they would want no further treatment.

For example, people in the early stages of Alzheimer’s disease could specify that when they reach a certain stage — perhaps when they no longer know who they are or recognize close relatives — they do not want to be treated if they develop a life-threatening infection.

Leaving such instructions when a person is still able to give them “is a gift to the family, relieving loved ones of uncertainty,” Ms. Lee said. She suggested consulting the website compassionandchoices.org for tools that can help families who want to plan ahead.

Complete Article HERE!

Diane Rehm tackles ‘death with dignity’ again, this time in a new documentary

“I’ve . . . learned that pain is number 6 on the list of reasons why people want medical aid in dying,” former NPR talk show host Diane Rehm says. “The loss of joy in life is number one.”

By Katherine Ellison

John Rehm’s death changed Diane Rehm’s life.

Ten years after John was diagnosed with Parkinson’s disease, he couldn’t stand, walk, eat or go to the toilet by himself. Outraged because the law forbade his doctor to help hasten his death, he resolved to stop eating and drinking.

Diane, the celebrated NPR talk show host and John’s wife of 54 years, kept vigil for the next 10 days. Just after 2 a.m. on June 23, 2014 — a few hours before John died — she took out her iPad and typed the first sentences of a passionate argument for medical aid in dying.

“In most of America, lawmakers and the church are deciding this issue for other people,” she says. “People they’ve never met. People whose suffering they have no way of understanding.”

In 2016, Diane retired from NPR station WAMU after working there for more than 30 years. Since then, she has championed what she and other advocates call “death with dignity.” On Wednesday, PBS will broadcast her new documentary, “When My Time Comes.”

The one-hour program and a similarly titled book published last year describe the death of her husband, a former lawyer for the Kennedy and Johnson administrations, and the perspectives of politicians, doctors and patients about the movement that has led to new laws in nine states and the District.

Diane remarried in 2017, at age 81, to retired Lutheran minister and therapist John Hagedorn. Since leaving WAMU, she has been producing a twice-weekly podcast and a monthly book club. She spoke to The Washington Post in an hour-long telephone conversation that has been edited for length and clarity.

Q: Why did your husband want to die?

A: It wasn’t so much that he was in pain. He said he had lost his sense of dignity. He was a very proud man, and he felt that if he continued to live he was going to lose even more dignity. He still had his sharp mind, and he knew exactly what he was doing and saying. Our daughter said, “Dad, we can keep you comfortable,” and he said, “Dammit, I don’t want comfort.”

I’ve since learned that pain is number 6 on the list of reasons why people want medical aid in dying. The loss of joy in life is number one. The morning after John had that conversation with his doctor, I remember walking in to see him and saying: “Sweetheart, you look wonderful! Your face is rosy and your eyes are sparkling!” He said: “I have begun the journey.”

Q: Do you worry that these laws allowing doctors to prescribe medications for the terminally ill so they can die peacefully could be a slippery slope toward making suicide more acceptable?

A: There’s a huge difference between medical aid in dying and assisted suicide. People who commit suicide want to die. In the film, I speak with a 37-year-old mother of two with breast cancer that had spread throughout her body. She said “If I had my druthers, I’d live until I’m 90. But I know I can’t, and I don’t want my 13-year-old son to see me suffer.” That’s the difference between medical aid in dying and suicide. One is a choice. The other is there is no choice; she knows she’s going to die and she wants to die peacefully and in a way that doesn’t leave her children with memories of her in agony.

Q: What limits, if any, protect people who might be pressured to end their lives early?

A: These laws are very specific, modeled on the first one, passed in Oregon in 1997. You must be within six months of death. You must be able to self-administer medication. You therefore cannot wait until your swallowing mechanism no longer operates and you also cannot wait until you can no longer say that you’re ready. In some states, you must be interviewed by a psychiatrist, alone, so that it’s clear that no one else is making this decision.

Q: What surprised you the most as you did your research?

A: What really shocks me is the fact that the Roman Catholic Church has been the most well-funded and outspoken opponent of medical aid in dying. A referendum in Massachusetts found some 70 percent of those polled said they were in favor. But then the church put $5 million into defeating that proposal.

Now, if your faith says to you, “I want God to decide when my life is going to end,” I’m in support of that. I’m an active Episcopalian myself.

If that’s what you want for yourself, I’m happy to support you along the way, and if you want everything medical aid can offer, then of course that’s what you should have. But I also believe that for people who’ve reached the end of a long, hard illness and are in their final six months before death, well, they should have a choice.

Q: What else do you think is preventing these laws from passing in more states?

A: Denial is a big problem. Talking about death is so taboo. You see me in the film standing in the church, asking how many people in the congregation plan not to die? Everybody is uncomfortable with the idea of death, so they don’t want to talk about it. But then what happens when your mother or father is dying and you haven’t spoken to them in advance? How are you to know what they want? Do they want to be hooked up to every possible machine at the end?

People also don’t know how and where the laws are changing. We now have medical aid in dying in Washington, D.C., but so many people do not know it. And 10 states are currently debating it, including New York and Connecticut. I am very hopeful this film will get more people talking about it. I also think covid has gotten people thinking more about how close death is for all of us.

As soon as the virus hit, I called my own physician and said I do not wish to go to a hospital if I come down with covid. I will not be put on a ventilator. She said “If that is your wish, I will make a note of it.” I switched doctors once we began making this film and I realized how few doctors are willing to help people who are ready to make up their minds.

Q: How did your bosses at NPR react to your outspokenness on such a controversial issue?

A: In 2016, there was a story about my advocacy in The Washington Post. I was planning then to do several dinners for Compassion & Choices, [ a U.S. nonprofit group working to improve patients’ rights]. NPR called and took me to task. Then 10 of the top executives at NPR came to WAMU and we sat in the conference room with my manager, and he was so worried I was going to stand up and say I quit if they told me I couldn’t do those dinners. I told them I was sorry but I wasn’t backing down. I wasn’t being paid to speak, but it was very important to me. Eventually they compromised and said do the three dinners you committed to do but if you speak out on this again on the air you will have to say you’re an advocate for medical aid in dying.

Q: Was this tension a factor in your decision to retire?

A: Absolutely not. Not at all. I was going to be 80 and I honestly feel that when those of us who’ve had such long and wonderful careers reach a certain point it’s no longer fair to just keep going because we have a big audience and people want us to keep going. There are young, talented people who ought to have a right to move into those chairs.

Q: Your documentary shows you with a young man videotaping you expressing your wishes for how you want to die. What are you telling him?

A: That’s my grandson Benjamin. He was 19 at the time. I’m telling him that should I somehow become an individual who experiences Alzheimer’s, I need you to tell me early on that you are seeing this. If that does happen, I will begin making my plans to end my life before I am no longer able to do so. Obviously, this is not allowed under any current Medical Aid in Dying laws around the country, so I will have to plan to take matters into my own hands.

When my time comes, I want all of my family with me: my husband, son, his wife, my daughter, her husband, their children and my dearest friends. I want us all to be sipping champagne and telling good stories about the times we’ve shared. And when the moment arrives, I want to go into my own bedroom with my children and my husband and I want to be able to go peacefully with the medications.

Complete Article HERE!

What Is Anticipatory Grief and How Do You Cope with It?

By Stephanie Sengwe

With loss comes grief. Whether it’s losing a loved one, a beloved pet, a job or even the dissolution of a relationship, grief can (and will) rear its ugly head. So why is it that in certain cases, like terminal illness, you can feel grief before the loss? While it’s easy to chalk your emotional rollercoaster up to the extenuating circumstances—medical bills, caretaking, etc.—you may also be going through what is known as anticipatory grief. So what exactly is anticipatory grief and how do we cope? We tapped a therapist to help us understand.

What exactly is anticipatory grief?

According to Diane Brennan, LMHC, a therapist at Life & Loss Mental Health Counseling anticipatory grief is “the grief we experience before the loss actually happens.” “Think about it as the thoughts, feelings, emotions and behaviors that we have that are anticipating a loss will happen.” While it’s most common in situations where people are preparing to lose someone, you can also experience feelings of anticipatory grief when you’re expecting a major change in your life such as being furloughed from work or an impending divorce.

How does it differ from “regular” grief?

When someone we love dies, we’re conditioned to expect (to some degree) a grieving process—looking through their old clothes, perusing photo albums, marking off anniversaries and birthdays. However, since anticipatory grief occurs before the actual loss, it can be much harder to spot, especially because oftentimes, if you are caring for someone with a terminal illness or dealing with the stress of contemptuous divorce, there are a lot of logistical things to take care of. Keeping track of your emotional well-being takes a back seat. “Sometimes people don’t even recognize that what they’re feeling prior to a loss is grief,” Brennan shares.

Who does anticipatory grief affect?

It can affect anybody coping with the prospect of loss—children of an impending divorce, partners of a sick spouse or owner of a business on the brink. But when it comes to terminal illness, it’s important to remember that anticipatory grief can also affect the person dealing with the terminal illness as the idea of their mortality becomes a reality.

How do you spot anticipatory grief?

People going through anticipatory grief can show a greater deal of irritability; they tend to anger quicker, and they may even have feelings of guilt. Says Brennan: “It can be marked with a lot of anxiety, you feel more on edge, a greater degree of sadness. There’s a lot of crying and feelings of hopelessness. Most people don’t make the ‘Oh, this is grief’ connection.”

Are there any positive sides to anticipatory grief?

“For some people, anticipatory grief can be marked with a bit of denial or deep anger about the situation,” Brennan explains. “But, when someone gains an acceptance that this is happening, it can allow them to experience joy and have conversations that are deep and meaningful and allows them to say goodbye.” Just like regular ole’ grief, it’s complicated.

3 Ways to Cope with Anticipatory Grief

1. Join a support group

A supportive group of family and friends is a priceless asset when you’re going through a tough time, but oftentimes they’re in the trenches with you as well. Finding a support group or an association where you can get support may be a better option. “If someone you love has an illness like Alzheimer’s or dementia, there are associations that you can turn to that can offer support, understanding and guidance for what you’re going through,” guides Brennan. Organizations such as the American Cancer Society, the National Multiple Sclerosis Society as well as national mental health hotlines such as Substance Abuse and Mental Health Services Administration, are all great resources to help you through.

2. Make time in your day to acknowledge what you’re grateful for

Coming to terms with the impending death of a loved one can be overwhelming but finding a good balance between your grief and your gratitude can make the road less daunting. “It helps if you can acknowledge your grief on a daily basis, but also focus on one thing you’re grateful for,” Brennan advises. “There are going to be some days that are draining every bit of energy from you but try to find that balance as best you can.” Consider starting a gratitude journal or a meditation where you focus on the things you’re thankful for. 

3. Have the conversations you’ve been holding in

Did you steal their car when you were 16 and never told them? Were you the one who scuffed their favorite pair of sneakers but let your little brother take the blame? Knowing your loved one is reaching the end of their life can grant you the opportunity to tell them all the things you never professed in the past. Conversations can be as shallow or as deep as you want them to be. And hey, if you had a particularly no-holds-barred relationship with no secrets, letting them know just how much they mean to you will be more than enough.

More pregnant women died and stillbirths increased steeply during the pandemic, studies show.

A nurse helping a pregnant woman at a hospital in Paris last November.

By Apoorva Mandavilli

More pregnant women died, experienced complications or delivered stillborn babies during the pandemic than in previous years, according to an analysis of 40 studies in 17 countries published on Wednesday in the journal Lancet Global Health.

Pregnant women face a heightened risk of severe illness and death if infected with the coronavirus. But the researchers, in Turkey and the United Kingdom, wanted to assess collateral damage from the pandemic on pregnancy and delivery, and so excluded from their analysis those studies that focused only on pregnant women who were infected.

Reviewing data on more than six million pregnancies, the investigators found evidence that disruptions to health care systems and patients’ fear of becoming infected at clinics may have led to avoidable deaths of mothers and babies, especially in low- and middle-income countries.

Data from a dozen studies showed that the chances of a stillbirth increased by 28 percent. And the risk of women dying while pregnant or during childbirth increased by more than a third in two countries: Mexico and India. A subset of studies that assessed mental health showed that postpartum depression and anxiety were also heightened during the pandemic.

Nearly six times as many women needed surgery for ectopic pregnancies — in which a fertilized egg grows outside the uterus — during the pandemic than before. Ectopic pregnancies can be treated with medications if detected early, so the results suggest that the surgeries may have resulted from delays in care.

The analysis did not find differences in other conditions associated with pregnancy, like gestational diabetes or high blood pressure, or in the rates of cesarean sections or induced labor.

The rates of preterm birth also did not change significantly during the pandemic in low- and middle-income countries. But in high-income countries, preterm births fell by nearly 10 percent.

The drop may be a result of changes in health care delivery and in pregnant women’s behavior during the pandemic, the researchers said, indicating that the pandemic has exacerbated disparities between low- and high-income countries.

Complete Article HERE!

Last Responders Comfort Others, While Managing Their Own Grief

by Lindsay Wilson

When Tom Belford’s mother died in May, her family was faced with the impossible task of limiting her funeral to 10 people. Belford, who is the owner and funeral director of John. A Gentleman Mortuaries and Crematory, recalled the difficult months leading up to his mother’s death.

“From March until May nobody was allowed in the building, and she was on the second floor. So we couldn’t go up to the window or anything,” he said.

The end of a life is a difficult time under any circumstances, but COVID-19 has made grieving even more difficult.

“COVID is taking people suddenly, and it’s affecting the families that have suffered, that go through a death at a time where maybe they shouldn’t,” Belford said.

Belford said in many cases families are losing people who are in their 50s and 60s due to complications from the virus.

“We’re here to help them make that first step back to a normal life after suffering a loss,” he said.

Chapel, 1010 N. 72nd St location (Real Yellow Pages)

John. A Gentleman has seen a steady number of virus-related deaths since the beginning of the pandemic, from March or April through today. Though numbers in Omaha aren’t what New York City or cities in California are seeing, deaths have risen from this time last year, according to last responders such as Belford.

Though the increase in business has been a change, the way Belford and his staff handle virus-related deaths has stayed the same.

“We practice something called universal precautions. We treat everyone as if they had COVID.”

These precautions, which include personal protective equipment used for both funeral directors and the deceased they are working with, have kept Belford’s staff safe since the beginning of the pandemic.

“We don’t treat anybody differently because they had COVID,” he said.

While the practices in caring for the deceased haven’t changed, funeral services have changed, in some cases dramatically, due to the virus.

“The biggest changes we see in the services is the social distancing,” Belford said. “For a while, the services were limited.”

Casket selection, 7010 N. 72nd St location (Real Yellow Pages)

Many churches and chapels continue to limit the capacity of funerals for everyone’s safety. In response to this, John. A. Gentleman has broadened its focus to include videocasting of services for loved ones who are unable to make it to the service.

“Before this started, we had one or two cameras for filming services,” Belford said. “We have six or seven now.”

Recorded services are helpful to many family members, but one important aspect of support is still missing.

“The families,” Belford explained, “they can’t socialize and get the support from their friends. And that’s probably the biggest disappointment families will see. Our interactions are the same. The care we give them is the same. But the care they get from their friends is different.”

Limiting social contact in a time of grief also directly curtails the level of support families would normally receive at the funeral and beyond. John A. Gentleman had to pause its bereavement programs due to the virus, though they recently started back up.

Many families are postponing memorial services for their deceased loved ones until after the virus is under better control. In March and April, some families planned to postpone services until summertime. But then those were pushed back, too. Some families are now pushing memorial services to summer 2021.

“Everybody’s pushing things back,” Belford said. “Hopefully the shots will come in and everybody will get vaccinated.”

Fortunately, Belford and his staff are currently on a waitlist for vaccinations and hope to receive their first shots in the next couple of weeks. In the meantime, Belford is more careful to protect himself and his family from the virus than the average person.

“I wouldn’t say I’m freaked out, but I would say that I’m cautious.” Belford said. “I’m very cautious about where I go and what I do. I have a big bottle of sanitizer in my car.”

Note of thanks, photo from John A. Gentleman

Being a funeral director is a tradition that has passed down for three generations in Belford’s family. While the virus has changed the way he conducts his services, one tradition that remains is the mortuary’s memorial plantings at Lauritzen Gardens, which Belford said is part of the service for every funeral. But even that has been altered slightly. The dedications are now posted online.

The coronavirus has rendered many aspects of life a moving target, and for last responders, more changes are likely to come. However, Tom Belford is prepared to continue to adapt to support families even as his own family mourns their loss. “No matter what happens to people, we’re here to help them,” he said.

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Getting a Prescription to Die Remains Tricky Even as Aid-in-Dying Bills Gain Momentum

Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights.

Valium, also known by the name diazepam, is one drug used in a mixture of aid-in-dying medications.

By Katheryn Houghton

KEY TAKEAWAYS

Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death.

Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights.

But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.

Linda Heim knew her dad didn’t plan to wait for the cancer to kill him. For decades, he’d lived in Montana, which they’d thought was one of the few places where terminally ill people could get a prescription to end their life.

After two years of being sick, Heim’s dad got the diagnosis in 2019: stage 4 kidney cancer. His physician offered treatments that might extend his life by months. Instead, the 81-year-old asked the doctor for help dying. Heim said her parents left the appointment in their hometown of Billings with two takeaways: The legality of medically assisted death was questionable in Montana, and her father’s physician didn’t seem willing to risk his career to put that question to the test.

“My parents knew when they left there that was the end of that conversation,” said Heim, now 54. “My dad was upset and mad.”

The day after the appointment, Heim’s mother went grocery shopping. While she was gone, Heim’s dad went to the backyard and fatally shot himself. (Heim asked that her father’s name not be published due to the lingering stigma of suicide.)

About a decade earlier, in 2009, the Montana Supreme Court had, in theory, cracked open the door to sanctioned medically assisted death. The court ruled physicians could use a dying patient’s consent as a defense if charged with homicide for prescribing life-ending medication.

However, the ruling sidestepped whether terminally ill patients have a constitutional right to that aid. Whether that case made aid in dying legal in Montana has been debated ever since. “There is just no right to medical aid in dying in Montana, at least no right a patient can rely on, like in the other states,” said former state Supreme Court Justice Jim Nelson. “Every time a physician does it, the physician rolls the dice.”

Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death. Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights. But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.

Even the terminology to describe the practice is disputed. Some say it’s “suicide” anytime someone intentionally ends their life. Others say it’s “death with dignity” when choosing to expedite a painful end. Such debates have gone on for decades. But Montana remains the sole state stuck in a legal gray zone, even if the practice can still seem taboo in many states with clear laws. Such continued uncertainty makes it especially hard for Montana patients like Heim’s dad and their doctors to navigate what’s allowed.

“Doctors are risk-averse,” said Dr. David Orentlicher, director of the health law program at the University of Nevada-Las Vegas, who helped write clinical aid-in-dying guidelines published in the Journal of Palliative Medicine in 2016. “The fear of being sued or prosecuted is still there.”

Despite that, access to medical aid in dying is gaining momentum across the U.S. Outside Montana, eight states and the District of Columbia allow the life-ending aid — six of them since 2014. So far in 2021, legislators in at least 19 states have pushed aid-in-dying bills, most seeking to legalize the practice and some seeking to drop barriers to existing aid such as expanding which medical professionals can offer it. Many are repeat legalization efforts with some, like in New York, dating as far back as 1995. Only the Montana bill this year specifically sought to criminalize it.

North Dakota considered legislation to legalize medically assisted death for the first time. Rep. Pamela Anderson, a Democrat from Fargo who proposed the measure after hearing from a cancer patient, said she wasn’t surprised when the bill failed in February in a 9-85 vote. The state’s medical association said it was “incompatible with the physician’s role as healer.” Angry voters called Anderson asking why she wanted to kill people.

“But I heard from just as many people that this was a good bill,” Anderson said. “There is momentum to not let this concept go away.”

Back in Montana, now retired state Supreme Court Justice Nelson said he has always regretted joining the majority in the case that allowed the practice because the narrow ruling focused on physicians’ legal defense, not patients’ rights. Having watched a friend die slowly from disease, Nelson, 77, wants the choice himself if ever needed.

Despite — or because of — the court decision, some Montana doctors do today feel that they can accommodate such patient decisions. For example, Dr. Colette Kirchhoff, a hospice and palliative care physician, said until she retired from private practice last year she considered patients’ requests for life-ending drugs.

Physicians who help in such cases follow well-established guidelines set by other states, Kirchhoff said. A patient must have six months or less to live — a fact corroborated by a second physician; can’t be clinically depressed; needs to ask for the aid; and be an adult capable of making healthcare decisions, which is determined by the attending physician. They must also administer the life-ending medication themselves.

“You’re obviously not going to do a case that is vague or nebulous or has family discord,” Kirchhoff said. “The doctors who are prescribing have felt comfortable and that they’re doing the right thing for their patient, alleviating their suffering.” Of her few patients who qualified for a prescription, she said, none actually took the drugs. Kirchhoff noted that, in some cases, getting the prescription seemed to provide comfort to her patients — it was enough knowing they had the option if their illness became unbearable.

For the past six legislative sessions — dating to 2011 — a Montana lawmaker has proposed a bill to clarify that state law doesn’t allow physician-assisted death. Republican Sen. Carl Glimm picked up that effort the past two sessions. Glimm said the current status, based on the more than decade-old court decision, sends a mixed message in a state that the Centers for Disease Control and Prevention ranks as having among the nation’s highest suicide rates. Glimm said allowing someone to end their life because of pain from a terminal illness could normalize suicide for people living with depression, which is also a form of pain.

“It’s really hard because I do sympathize with them,” Glimm said. “What it boils down to is, if you’re going to take your own life, then that’s suicide.”

Kim Callinan, president and CEO of national nonprofit Compassion & Choices, said the comparison to suicide is frustrating. “People who are seeking medical aid in dying want to live, but they are stricken with a life-ending illness,” she said.

Glimm and his bill’s supporters say that some patients could be pressured into it by family members with something to gain, and doctors could prescribe it more often than they should.

But Callinan, whose group advocates for aid in dying, said that since Oregon first legalized it in 1997, no data has shown any merit to the warnings about abuse and coercion. One study showed no evidence of heightened risk of abuse within the practice for vulnerable populations such as the elderly. But critics have said states aren’t doing enough to track the issue.

By now, Leslie Mutchler, 60, knows most of the people on all sides of the debate after years of testifying in support of protecting aid in dying. Her dad, Bob Baxter, was a plaintiff in the case that eventually led to the 2009 Montana Supreme Court decision on medically assisted death. After leukemia whittled his body for years, he died in 2008 without the option, the same day a lower court ruled in his favor.

Mutchler said she didn’t understand how complicated the Supreme Court’s ultimate ruling was until her son TJ was diagnosed with terminal metastatic pancreatic cancer in 2016.

He was 36 and lived in Billings, Montana. By then, the 6-foot-5 man had lost 125 pounds off what had been a 240-pound frame. He couldn’t keep food down and needed a feeding tube for medicine and water. TJ Mutchler wanted to have the choice his grandfather never got. But when he went to his physician and asked for aid in dying, the response was it wasn’t legal. Eventually, Mutchler found a doctor to evaluate her son and write the prescriptions for phenobarbital and amitriptyline. TJ took the drugs more than two months later and died.

“People contact me asking how to find someone and it’s difficult,” Mutchler said. “That’s why people end up taking matters into their own hands.” Research into terminally ill populations is limited, but one national study published in 2019 found the risk of someone with cancer taking their own life is four times higher than the general population.

For Roberta King, another one of Baxter’s daughters, the ongoing fight over aid in dying in Montana means she knows every other winter she’ll make the more than 200-mile round trip from her Missoula home to the state capital. King, 58, has testified against all six bills that sought to ban aid in dying following her dad’s case. She memorized a speech about how her dad became so thin after his medicine stopped working that it hurt for him to sit.

“It’s still terrible, you still have to get up there in front of everybody and they know what you’re going to say because it’s the same people doing the same thing,” King said. But skipping a hearing doesn’t feel like an option. “If something were to happen to this and I didn’t try, I would never forgive myself,” she said.

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