Julie McFadden, a hospice nurse in California. McFadden has spoken publicly about end of life care as she tries to educate people about how death with dignity takes place.
Many people might not like talking about end-of-life care or death until they’re faced with it themselves, but this hospice nurse wants to remove the taboo from the topic and educate people instead.
As an intensive care unit (ICU) nurse for over a decade, Julie McFadden, 40, focused on keeping patients alive, but when she made the switch to hospice care eight years ago, her attention turned towards making people feel comfortable as they neared the end.
McFadden, from California, regularly talks about the realities of hospice care, and what happens when a patient opts for medical aid while dying, on social media. She told Newsweek: “My main point is to make everyone a little less afraid of death. I want to change the way we look at death and dying.”
Medical aid in dying (also referred to as death with dignity, physician-assisted death, and aid in dying) is the prescribing of life-ending medication to terminally ill adults with less than six months to live, who are mentally and physically capable of ingesting the medication independently.
At present, only 10 states and the District of Columbia permit this process, but there is growing support elsewhere. A survey of over 1,000 people in 2023 by Susquehanna Polling and Research concluded that 79 percent of people with a disability agree that medical aid in dying should be legal for terminally ill adults who wish to die peacefully.
States where it’s permitted include Colorado, California, Washington, Hawaii, Maine, Montana, Oregon, and Vermont. Legislation is also being considered in Massachusetts, New York and Pennsylvania.
How the End of Life Drug Is Administered
As a hospice nurse in California, where a bill was passed to permit death with dignity in 2015, and became effective from June 2016, McFadden has assisted many patients who wanted to die on their terms.
She believes that there is real beauty in someone being able to have full autonomy over their death and choosing when they go, but she knows it’s a polarizing issue.
“People have to remember that not everyone has the same beliefs and I think it’s a beautiful thing that someone gets to have control over,” McFadden told Newsweek. “It’s powerful to witness someone be so alert, say goodbye to their loved ones, have their loved ones watch them take this drink and then die, but still be willing to be there to support them.
“I think most people in the U.S. have no idea that this law even exists, and even when I give very descriptive explanations of what the law is, what it means, what the criteria is, there’s still people who think I’m just overdosing patients with morphine.”
In order to acquire the medication, an individual’s request must be approved by two doctors, they have to undergo a psychological evaluation to ensure they aren’t suicidal, and doctors have to confirm that the person is capable of making their own decisions. Patients with certain conditions do not qualify, including those with dementia.
If approved, the person must take the medication themselves, and they can have family, friends, and hospice staff present if they wish.
Since June 2016, in California 3,766 death with dignity prescriptions have been written, and 2,422 deaths registered. To protect the confidentiality of any individual who makes this decision, death certificates usually note an underlying illness as the cause of death.
McFadden continued: “There are a few drugs mixed in, it’s taken all at once and the initial drugs kick in very quickly, within three to seven minutes. This person who ingested this drug will fall asleep or basically go unconscious. I say fall asleep just so people can picture what it looks like, but they’re unconscious.
“Then, the body is digesting and taking in the rest of the drugs that are also in that mixture, which will eventually stop the heart. It’s a general sedative and then they take two different cardiac drugs to stop the heart.
“They have a change in skin color and changes to their breathing, in what we call the actively dying phase, which is the last phase of life.”
Julie McFadden pictured, a hospice nurse in California. McFadden spent several years as an ICU nurse before going into hospice care in 2015.
People Have A Lot of Misconceptions
Regardless of whether you’re in a state that permits physician-assisted death or not, dying isn’t regularly talked about in a positive way.
One of the reasons why McFadden wants to have a more open conversation about it is to remove any prior misconceptions that people might have and educate them on what really happens.
“I have not seen anyone show signs of pain, but people are always concerned about that,” she said. “In general, if you’ve done this for a long time, if you’ve been in the healthcare system and work as a nurse or by someone’s bedside, you know what a body in pain looks like, it’s very obvious.
“A person who is unconscious and can’t verbally say they’re in pain will show you with their body language. Most people that have taken this medication who I have witnessed did not show those signs. I witness it day in, day out, but it’s pretty miraculous to see how our bodies, without even trying, know how to die. They’re built to do it.
“People get really angry and think I’m trying to hurt people. I always want to educate people around this topic, because the main thing people don’t want is for their loved ones to suffer at the end of life.”
As an ICU nurse formerly, McFadden explained to Newsweek that she was trained to keep patients alive, and they “didn’t have conversations about death early enough.” Despite patients being near death, they were kept alive through machinery for weeks or months, before ultimately dying on the ward.
Many of the country’s biggest medical associations are conflicted by death with dignity, with some choosing to endorse it, and others speaking against it. The American Public Health Association, and the American Medical Student Association are among the bodies to endorse it, but it has been publicly opposed by the American Medical Association and the American College of Physicians.
Hospice nurse Julie McFadden, 40, from California, has been discussing death with dignity. Death with dignity is permitted in California, so McFadden has shared her experiences of helping patients go through that process.
Talking Openly About Death
In 2021, McFadden set up her TikTok account (@hospicenursejulie) to speak openly with her followers about death and answer any questions people might have. Many of her videos have gone viral with millions of views, and while she does get a lot of positive feedback, there is also plenty of negativity.
There are people who wholly disagree with her advocacy for death with dignity as they claim she is playing God, or that she’s promoting suicide. But by having an open conversation, the 40-year-old hopes to make people less fearful of dying.
Speaking to Newsweek, she said: “Most of my audience is general public, that’s why I don’t talk like I’m speaking to other nurses or physicians. I talk like I’m speaking to my families who I talk to in everyday life. I think death just isn’t talked about, or it’s not explained well.
“I’m seeing so many times that people who are willing to have difficult conversations about their own death, who are willing to say they’re afraid to die, those patients who were willing to ask me those things and talk to me about death, had a much more peaceful death.”
Family members or close friends may choose to be involved in washing and dressing the body after death has occurred. Caring for a body is not easy and can stir up strong emotions. See Moments After a Death. Many people turn to health care providers and funeral directors for help. They find comfort and assurance in entrusting the body to those who provide professional services. The deceased may have left instructions for their after-death care to be handled by the health care team and chosen funeral home. Other people practice religions or belong to communities that view care of the body as a family responsibility. Their faith community, elders or neighbours provide guidance and support for hands-on care of the body. For some, this is a way of honouring the person – a final act of kindness to him or her.
This article outlines the steps involved in the care of the body after death.
In advance of the death
Talk to the health care team in advance about family or friend involvement in after-death care. You may also want to talk to the health care team about the supplies and assistance that will be required. Washing, dressing and positioning the body
Washing and dressing the body is an act of intimacy and sign of respect. Those who were most involved in the person’s physical care may feel the most comfortable in doing this. Continued respect for the person’s modesty is essential.
Regardless of whether the person died at home or in hospital, hospice or nursing home, washing and positioning the body is best done where death occurs before stiffening of the body (rigor mortis) sets in. Rigor mortis happens within two to seven hours after death. Regardless of the location of care, you may need four to six people to help in gently moving and turning the body.
At home, you can wash the body in a regular bed. However, a hospital bed or narrow table will make the task easier. Since the body may release fluids or waste after death, place absorbent pads or towels under it. It is important to take precautions to protect yourself from contact with the person’s blood and body fluids. While you are moving, repositioning and washing the body, wear disposable gloves and wash your hands thoroughly after care.
Washing the person’s body after death is much like giving the person a bath during his or her illness.
1. Wash the person’s face, gently closing the eyes before beginning, using the soft pad of your fingertip. If you close them and hold them closed for a few minutes following death, they may stay closed on their own. If they do not, close again and place a soft smooth cloth over them. Then place a small soft weight to keep the eyes in position. To make a weight, fill a small plastic bag with dry uncooked rice, lentils, small beans or seeds.
After you have washed the face, close the mouth before the body starts to stiffen. If the mouth will not stay shut, place a rolled-up towel or washcloth under the chin. If this does not provide enough support to keep the mouth closed, use a light-weight, smooth fabric scarf. Place the middle of the scarf at the top of the head, wrapping each end around the side of the face, under the chin and up to the top of the head where it can be gently tied. These supports will become unnecessary in a few hours and can be removed.
2. Wash the hair unless it has been washed recently. For a man, you might shave his face if that would be his normal practice. You can find step-by-step instructions in the video Personal Hygiene – Caring for hair.
3. Clean the teeth and mouth. Do not remove dentures because you may have difficulty replacing them as the body stiffens.
4. Clean the body using a facecloth with water and a small amount of soap. Begin with the arms and legs and then move to the front and back of the trunk. You may need someone to help you roll the person to each side to wash the back. If you wish, you can add fragrant oil or flower petals to your rinse water. Dry the part of the body you are working on before moving to another. Some families or cultures may also choose to apply a special lotion, oil or fragrance to the person’s skin.
5. Dress or cover the body according to personal wishes or cultural practices. A shirt or a dress can be cut up the middle of the back from the bottom to just below but not through the neckline or collar. Place the arms into the sleeves first and then slipping the neck opening over the head, tucking the sides under the body on each side.
6. Position the arms alongside his or her body and be sure the legs are straight. If the person is in a hospital bed with the head raised, lower the head of the bed to the flat position.
If a funeral home is assisting with the funeral, cremation or burial, call to arrange for transport of the body to their facility. If the death has occurred in a hospital, hospice or long-term care facility, the staff will arrange for the body to be picked up by the funeral home of your choice. In hospital, once the family agrees, the body is moved to the morgue and kept there until transported to the funeral home.
If your family is planning a home funeral or burial, cover the body in light clothing so it will stay as cool as possible. A fan, air conditioning, dry ice or an open window in the room where you place the body will help to preserve it.
In the United States, more than 1.6 million people identify as transgender. Of these, more than one-fifth are over the age of 65, the vast majority of whom transitioned in the latter part of their lives. Transgender Americans are both living and dying among us: precisely why we health care providers must improve our approaches to ensuring dignified and respectful care for transgender elders, especially at the end of life.
What trans people hope for in their final moments of life — whether that is months, days, or hours — is no different than what anyone else wishes for. Trans people don’t want to be in pain. Trans people want their decisions to be honored. Trans people want a comfortable environment, to be treated with respect and dignity, and to be in the company of the loved ones they choose. We all want to live our last days authentically.
However, trans patients’ end-of-life journey poses unique challenges, many of which are rooted in their fear of being judged, intentionally or unintentionally humiliated, and excluded from critical care services, including pain relief — things that doctors, nurses, and chaplains sometimes unwittingly contribute to. And while mistreatment of transgender elders in hospice care — whether at home or elsewhere — can take many forms, it almost always stems from a lack of understanding or knowledge about transgender identity and needs, understanding what topics are within- and off-limits, and, in the worst cases, outright bias and discrimination.
We are both nurses. One of us, Dallas, has seen the impact of poor gender-affirming care firsthand and has co-founded a startup nonprofit, Transhealth, to provide, teach, research, and advocate for good gender-affirming care. The other, Cathy, has more than 30 years of experience working in hospice. We both understand that gender-affirming care is simply good health care, and too many are deprived of it, especially when unable to advocate for themselves.
When health care providers mistake patients’ gender or call them by their assigned rather than chosen name, it can be deeply distressing and disrespectful. Choosing a new name is one of the first, most profound public declarations a trans person goes through when first transitioning. Likewise, intentionally keeping one’s birth name amid a gender transition can be a sacred declaration, too. As such, it’s critical that clinicians get patients’ names right from the first meeting and use pronouns that match their patients’ chosen gender identities. Starting with their first interactions, health care workers should introduce their own name and pronouns, leveling the power imbalance, and then ask the individual for their name and pronouns. This is the first step in establishing trust.
Because trans patients’ unique health needs are often misunderstood, accommodations can be lacking, especially within the more specialized hospice setting. What does personalized care look like? It’s when clinicians take the time to affirm and support patients’ daily care rituals that match their gender identities. So a bedridden trans man who hasn’t had “top surgery” might need help binding his chest. A trans woman may need assistance shaving or doing her hair or makeup. Providers should also be supportive of patients’ continued use of hormone therapy, even if it interacts with other medications or diagnoses. One’s social embodiment remains vital even if at the end of life.
Because trans patients sometimes arrive for care in hospice facilities in a stage of advanced need, clinicians caring for trans communities must be extra vigilant as they manage symptoms and offer support and respect. Encountering health care workers who are reticent to care can compound feelings of isolation, discrimination, exclusion, and lack of acceptance. Trans patients might also be held at a distance by fellow hospice patients and their family members. Given that, clinicians must go above and beyond with their trans patients, regularly checking in in all the usual ways (How’s your pain? What do you need? How are you feeling?) as well as ways more specific to their gender identity (Do you have what you need to support your gender identity and gender expression? How is your circle of support being included in your care? Is anything/anyone keeping you from feeling comfortable and like you belong?).
Education is a critical component of delivering gender-affirming hospice care, too. Whether health care systems require it or not, care providers at all levels must take trans-inclusive care courses and training, like the courses offered by GLMA and the Fenway Institute, to fully understand the issues trans patients face. Such learning reinforces behaviors and builds knowledge about what respectful, nonjudgmental, and supportive care looks, sounds, and feels like.
Beyond day-to-day care are social and economic considerations and how they’re affected by a patient’s gender identity. Care providers can ask gentle, open-ended questions to assess whether additional support or resources might be needed: Do you struggle paying for rent, food, utilities, or your medications? Are there any issues with violence at home? These basic questions apply to all individuals, but transgender people are at greater risk for food insecurity, housing insecurity, and safety concerns, so it’s even more important to address them as part of a plan of care.
Conversely, curious questions unrelated to trans patients’ palliative care and well-being are wholly inappropriate. Off-limits are questions like: What was your name before you transitioned? Have you had surgery? What do your family and friends say? Are you a man or a woman? It’s vital that clinicians be aware of the harm these questions can cause.
There are administrative considerations, too. Hospice and palliative care providers often discuss the benefit of advanced directives, which are legal documents that outline the passage of care decision-making responsibilities when the patient is unable. Because transgender patients are sometimes estranged from biological family, these conversations and documents have particular relevance, and health care workers should pursue patients’ wishes while they have the ability to choose who will decide for them at life’s end if not their relatives. Even if a complete legal document isn’t finalized, partial directives are better than no directives at all.
Finally, it’s critical that clinicians not assume that every trans patient’s life has been marked by suffering. Many, many trans men and women have had beautiful, affirmed, supported lives. Clinicians must not assume that all transgender patients are similar. Trans folks must be cared for as individuals first.
Trans elders are part of our communities, both in life and in death. Supporting the overall well-being of trans patients means acknowledging their humanity and affirming their identities as humans first. We, as health care providers and clinicians, must ensure our transgender elders live and die with their dignity intact and their authenticity respected. The quality of our care should reflect our shared humanity, undiminished by our differences.
— Volunteers ensure dying patients don’t face death alone
In 2005, Trinity Health started No One Dies Alone, a program where volunteers visit patients who are nearing death, standing by their bedside as they approach death. Volunteers accompany patients by holding their hands, read to them, play music or talk about life, and death, with the patients. The program was on hiatus during the COVID pandemic, but rebooted this past September.
Trinity Health’s palliative care program ‘No One Dies Alone’ sends volunteers to be with patients in final hours, give families respite
Dying is a personal — and often difficult — thing to discuss.
From choosing hospice care and drafting wills to an entire continuum of end-of-life care, there are many views about what’s best.
But there’s one thing most people can agree on: no one wants to die alone.
And thanks to a group of volunteers through Trinity Health, no one has to.
In 2005, a team of people at the Catholic health care system started No One Dies Alone, a palliative care program that assigns volunteers to be present with patients who are nearing death, standing by their bedside when family and friends can’t be present.
“No One Dies Alone is a comfort companion program for those patients who don’t have family or whose family can’t be present at the bedside 24/7,” said Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia. “Whether family and friends are out of state, or can’t get in right away, or are in need of respite care, we provide volunteers who can be there if needed. We’re a friend who looks for any kind of distress and keeps them company.”
Lisa Marie Blanek, a No One Dies Alone volunteer, reads a book bedside of a patient. The No One Dies Alone program has volunteer read to terminally-ill patients, play music or just hold hands with people as they near death. The program ensures no patient at Trinity Health’s Livonia and Pontiac hospitals dies without anyone else in the room.
The program started after Trinity Health’s Palliative Care Program did a study on end-of-life care around the country, noting 50% of patients die in a hospital, and of those, about 10-12% die alone, without family and friends at their side.
Through No One Dies Alone, volunteers keep patients company in their final days, doing everything from reading to patients, holding their hand, or calling a nurse if a patient is in discomfort.
“We are there to be at the bedside,” Stephen told Detroit Catholic. “We do a lot of hand-holding. We don’t do nursing care, but what we do is a lot of talking, prayers if they want, and just being that second set of eyes. If we see some distressing signs, like pain or a need for medical care, we call the nurse. We get a wet washcloth if they are running a fever, or Chapstick when their lips are chapped. We’re there to be that friend by the bedside, keeping an eye on them, letting them know they are not alone.”
No One Dies Alone took a hiatus during the COVID-19 pandemic, when volunteers weren’t permitted in hospitals.
The program rebooted last September, operating out of Trinity Health’s Oakland (Pontiac) and Livonia locations, with 38 volunteers at Oakland and 29 in Livonia.
No One Dies Alone volunteers typically operate on three-hour shifts and receive a brief report about the patient, including a person’s family situation, interests and condition. Volunteers often build a rapport with the patient’s family, stepping in to allow family members to get a bite to eat or a change of clothes at home.
Susan Abentrod practices tucking a patient in at the Trinity Health Oakland Hospital in Pontiac. No One Dies Alone volunteers are there to fill in the gaps for family and friends who can’t be with patients nearing death 24/7 and for doctors and nurses who are managing multiple patients at a time.
“The volunteer who is coming in to (watch over) the person who is dying often is not able to talk to the patient, but they do talk with family, who are grateful they are there,” said Kelly Herron, visit coordinator for No One Dies Alone. “They appreciate that someone is stepping into the space for their family, knowing their loved one is being watched over.”
Volunteers are not meant to act as medical personnel or hospice workers. Their work is more a ministry of presence, Herron said.
“As a volunteer, our role is limited because we are there to hold a space,” Herron said. “It’s about showing up and being a companion, being willing to talk about the things they want to talk about. It’s about being a friend and putting them first, not being afraid to listen to them talk about what they are feeling as they near the end.”
Sometimes, volunteers can even fulfill special requests, such as having terminal patients see their pets one last time.
“A lot of patients have pets at home, and when we ask them if they have a wish, often they regret they’ll never see their dog or cat again, so we bring the pets in — as long as they are updated on their shots — so they can be with their owner,” Stephen said.
Sometimes, volunteers are a shoulder for family members struggling with the loss of their loved ones, Stephen added.
“We had a young mom who was dying, and she had a 7-year-old daughter, and the dad didn’t know how to tell the daughter,” Stephen said. “(The mother and daughter) shared a birthday, and we knew the mom wasn’t going to make it to the next birthday. We asked what they usually do for their birthday, and the dad said they always have a tea party. So we got the mom out of her hospital gown, had some nice pajamas for her, and got the daughter dressed up. My husband went to Costco to get balloons, and we had a tea party. We took pictures, not only for the daughter to remember, but for the mom to hang onto that memory. It’s not easy losing your mother at 7, but it was a lovely time.”
Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, leads the No One Dies Alone program. She leads a team of volunteers who read to patients nearing death, get them an extra blanket if they need on, play their favorite music on the stereo and are just their for patients who are nearing death. The program is one of presence and accompaniment, Stephen said, just being there for those nearing the end of life.
Most visits are more low-key, but the idea is the same: being with people in their hour of need.
Herron recalls her own experience of being with her own mother when she died, adding it was a comfort to both of them to know she wasn’t alone. It was Herron’s time as a No One Dies Alone volunteer that prepared her for her mother’s death, she said.
“When my mom died, I was sitting there with her,” Herron said. “Everyone thought she probably would die soon. It was the middle of the night, everyone went to sleep, and I remember holding my mom’s hand, saying, ‘I’m going to go to sleep. You go to sleep too, and I’ll talk to you in the morning. But I’m right here.’ I was just pulling my hand back to demonstrate that I was falling asleep, but I didn’t close my eyes. I just looked at her, and she opened her eyes and look at me before she died.
“To me, that’s why we do this,” Herron added. “If at any point, someone is going to open their eyes or squeeze their hand, it’s so comforting that someone is there — that they are not forgotten, that they are not alone, and that it matters to someone as you are making that transition.”
Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, poses for a photo with No One Dies Alone volunteers, Chuck Pokriefka, Lisa Marie Blanek, Susan Abentrod and Joe Fugitt.
While No One Dies Alone is a comfort to the dying and their families, it’s also an added benefit to hospital medical care staff, who appreciate having an extra set of eyes and ears in the room.
“Our nurses are so compassionate, and they just want to be there. They don’t want anybody to be alone when it is the end of someone’s life, but they have a patient load,” Stephen said. “So when they see us, they are so excited. When our volunteers come in, the nurses ask if they can get us a cup of coffee, or if we need anything. They take really good care of us, because they appreciate there is always someone there with their patients.”
— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
by Keri Wiginton
My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.
Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.
Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
How did I get here?
It was my therapist’s idea.
A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.
I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.
I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.
My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.
So, my doctor set me up with a goal-oriented behavioral counselor.
I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.
We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.
I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.
That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.
After that, I relaxed into my new role visiting people who are dying.
I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.
Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.
I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.
Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.
“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”
Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.
My compassion leaves a lasting impression even if my identity doesn’t.
Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.
I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.
I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.
A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.
In other words, “you’re wired to feel better through doing this,” said Post.
At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.
I feel more confident in other areas of my life because I feel successful at volunteering.
“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.
We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.
My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.
Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.
There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.
Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.
“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”
I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.
“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”
I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.
A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.
“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.
According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.
“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”
When someone close to you dies unexpectedly, you’ll feel an avalanche of emotion. And on top of it all, you’ll have the responsibility of planning a funeral, notifying others of the death and resolving any lingering duties or financial commitments.
So where do you start?
Here’s a checklist of the basic steps to follow in the event of a sudden death of your spouse, parents or others for whom you are the main survivor.
It’s worth remembering, though, that you don’t have to take this on alone. This process can be overwhelming and difficult, so if family members and friends offer help, take it. And if you need help processing the loss from someone who’s outside of your inner circle, here’s how to find mental health professionals you can trust.
What to do in the first few days
Arrange for a death certificate. This is the legal record of the death, filed with county officials and the California Department of Public Health’s electronic registry. You’ll need it for funeral arrangements and life insurance claims, for example.
Under state law, the attending physician is generally the one required to fill out the necessary medical information and sign the certificate, and the funeral director is the one who submits it to the registry. But they may need your help to fill out the sections of the certificate with personal information about the deceased, including age, usual occupation, highest level of education attained, and mother and father’s names.
If the death occurred at a hospital or other medical facility, you can count on the doctors there to handle this paperwork. But if it occurred at home, AARP says, call 911, and the police and paramedics will conduct an investigation and make a declaration of death. The medical team will help you decide whether an autopsy is needed by the L.A. County Medical Examiner-Coroner or if you should go ahead and call a funeral home.
If the deceased wanted to be an organ donor, you may have trouble fulfilling that wish. Vital organs that are cut off from a supply of oxygenated blood for more than 20 to 30 minutes are no longer suitable for transplants, said Thomas Mone of OneLegacy in Azusa, the largest organ procurement organization in the United States. That’s why the only feasible donors are a small percentage of people who die in a hospital while on a ventilator, he said.
Hospitals are required by law to notify the local organ procurement organization when they have a dying patient who may be a potential donor. If your loved one registered as a donor, that choice can’t be overridden. If not, the survivors will need to make the decision on your loved one’s behalf.
Reach out to the deceased’s community. You’ll need to notify the deceased’s family and friends of the person’s death. If there isn’t already a list of people who need to be notified, AARP and the National Institute on Aging suggest that you make a list and call, text or email — whatever you feel most comfortable doing.
How you communicate depends on each person’s circumstances before and after the death, said Joanne Weingarten, Our House Grief Support Center’s senior clinical coordinator of adult programs. For example, if the survivor is a single parent or an adult child, consider the responsibilities they have and how they grieve.
Weingarten says there isn’t a right or wrong way to notify people. She said you might want to call your friends and family, but write a social media post to inform people outside that circle.
If you do make a phone call and it’s someone you think might have a strong reaction, make sure they’re not driving. You might hold off telling them until someone else is around who can support them.
If you don’t have the capacity to make phone calls, ask yourself if there’s someone in your life whom you can trust to make the calls for you.
Ask the people you’re notifying to spread the word to others connected to the deceased, said AARP. If they were a part of the same club, church group or workplace, they can help let others know.
There are also a couple of avenues for notifying people online and in print. You can announce a person’s death on social media. Families also publish obituaries and death notices either online, in a newspaper or both. An obituary includes all the tributes that families and their funeral homes write about their loved ones, said Stephen Segal, senior content director at Legacy.com, which publishes obituaries online and partners with local newspapers to make submitting an obituary easier.
“On the other hand, most people today use the term ‘death notice’ to mean a very short, just-the-facts announcement of the person’s death and funeral details,” Segal said.
An online obituary is fast and simple to share.
“It provides a permanent online sympathy space where people can share their own memories, condolences and messages,” he said.
Publishing an obituary in the local newspaper is the best way to reach all the neighbors, colleagues, old classmates and other hometown folks, Segal said.
What do you do when someone dies?
Because we find death so hard to talk about, there are probably lots of things people wonder but don’t know. We have answers.
An obituary can be brief or long, depending on what the family prefers. There are six essential things obituaries include, according to Legacy.com.
Announcement of death. What was their full name? What town did they live in? How old were they? Where and when did they die? And, if you’re comfortable sharing, what was the cause of death?
Life story. What are meaningful things about the person being remembered. Where did they grow up? Where did they go to school/work/church? What groups did they belong to? What did they care about? What will their loved ones miss most?
List of family members. What close family members survive them, and which died previously? Traditionally, obituaries include spouses or partners, parents, children, siblings, grandparents and grandchildren. It’s OK to include other close loved ones too, even if they were not blood relatives.
Funeral information. Will there be public or private memorial services? Include the dates, times and locations of any planned events, and include the name of the funeral home so anyone can contact them with questions.
Sympathy preferences.Where should cards and flowers be sent, and are there any charitable donations the family would like to suggest?
A photo. A closeup of your loved one’s face usually works best. It can be a recent photo or one from their youth — or, if possible, include both.
However you do this step, Weingarten said, remember that there isn’t a timeline and that you don’t owe anyone anything.
“In those moments, it’s really about taking care of yourself or your inner circle, especially if they’re elderly or young children who need extra support and attention,” she said.
“And then of course, trying to take care of yourself because in those early days, it’s about survival for many people.”
Make funeral arrangements. The first step is figuring out whether the deceased had made plans for a funeral. If so, you’ll need to find those plans — the family’s attorney may be able to help on that front. An untimely death could leave you with zero planning, so talk with family members about how to honor that person.
What to do within the first few weeks
Get copies of the death certificate. You’ll need them to file insurance claims, cancel credit cards and close financial accounts. If the deceased person’s remains are in L.A. County, contact the county Department of Public Health’s Vital Records office for a copy of the death certificate.
The permit application requires the deceased’s full name, date of birth, date of death, city of death, and county or state of birth if the death occurred outside of California. The certificate costs $24, and paperwork for the certificate can be processed by mail or in person.
Locate a will (if there is one). If you know that the deceased had a will but you don’t know where it is, AARP suggests looking for it in a desk, a safe-deposit box or wherever the person kept important papers.
For the record:
12:33 p.m. May 19, 2023An earlier version of this article misstated the maximum value of small estates for probate purposes as $166,250. For deaths on or after April 1, 2022, the maximum small-estate value is $184,500.
A will is a set of instructions that will guide what happens to the deceased’s estate — that is, that person’s assets and debts. It will typically include the name of an executor, who will have the power to take actions and make decisions on the estate’s behalf. If there is no executor, or if the executor is unable or unwilling to carry out the responsibilities, the duties will be handled either by an administrator named by a probate judge or, in the case of small estates worth no more than $184,500, a close relative acting as an informal representative.
Unless the deceased person had a small estate, a probate court will have to oversee the distribution of at least some of the assets, with or without a will. You can find a number of do-it-yourself guides to probate online, or you can hire an attorney who specializes in probate.
Identify beneficiaries. If your loved one had named a beneficiary or beneficiaries for insurance policies, retirement funds and bank accounts, those assets can be paid out or transferred directly without waiting for probate. The same is true for any accounts that the person had designated as “payable upon death,” as well as any accounts jointly held or property owned as joint tenants.
One other, less common asset that doesn’t have to go through probate is a living trust. Anything in the trust will be transferred automatically to the trust’s beneficiaries.
Stop Social Security payments. Although surviving spouses and, in some instances, children can receive survivors benefits, any benefits paid to the deceased person in the month of death and thereafter must be returned, the Social Security Administration advises. That’s why it’s vital to make sure the death is reported to the SSA.
“In most cases, the funeral home will report the person’s death to us,” the SSA says on its website. “You should give the funeral home the deceased person’s Social Security number if you want them to make the report.”
But don’t stop there. The SSA and the National Institute on Aging recommend that you get in touch with the Social Security Administration to make sure the death has been reported and apply for survivors benefits, if you are entitled to them. To do so, you’ll need to call (800) 772-1213 (TTY: 1-800-325-0778) on a weekday; according to the SSA, you cannot report a death or apply for survivors benefits online.
Contact financial institutions and insurers. Notifying credit reporting agencies of the person’s death will help prevent identity theft. Call the major ones — Equifax, Experian and TransUnion — and ask how to submit a copy of the death certificate.
If the person had life insurance, reach out to the insurer to report the death and have the beneficiaries paid. You’ll need a copy of the death certificate for this process as well.
You’ll want to cancel the credit cards that were solely in the deceased person’s name, but don’t pay any amounts due at this time; according to Bankrate.com, the estate will be responsible for the unpaid balance, if there is one. For joint accounts, the balance becomes the responsibility of any surviving account holder.
Call the customer service number on the back of each of the person’s credit cards and ask for “deceased account services” or the “estate unit,” Bankrate advises. You may need to submit a copy of the death certificate, but many card issuers do not require one.
Checking and savings accounts are a bit more complicated. If they are joint accounts, the surviving person on the account retains control after the death. If they were individual accounts with a named beneficiary (as in a “payable upon death” designation), then the funds will flow straight to the beneficiary once the bank is formally notified of the death, a step that may require a copy of the death certificate. If they were individual accounts without a named beneficiary, notifying the bank about the death will freeze the funds, but the executor or administrator of the estate (or representative, if it’s a small estate) will have to get involved to distribute the money.
Make a list of accounts to cancel or remove. We live in a time of subscriptions for streaming entertainment, digital news, boxed meals and curated clothing. Those all need to be canceled. The mundane monthly utility bills need to be canceled as well.
Unless the deceased left a list of accounts along with the corresponding account name and password, you’re going to have to do some digging and make several phone calls. If you have access to the deceased person’s credit and debit card account statements, you can look for monthly charges there. Failing that, multiple websites offer lists of subscription services and other common sources of monthly bills — for example, see this one from an online urn seller.
In case you’re hoping for a shortcut to this process, canceling a credit card won’t stop the monthly charges on that account from being assessed and potentially running up bills for the estate. You’ll need to address the sources of those charges separately.
Cancel the driver’s license. AARP urges you not to forget to cancel the deceased driver’s license to prevent identity theft. Go to the DMV website to see its list of required documents for the cancellation process.
Notify the Postal Service. You can stop mail from being sent to the deceased’s registered address. The U.S. Postal Service advises you go into your local post office to learn how to file a proper request to either stop or redirect mail, as well as remove the deceased from advertising lists.
Cancel the person’s voter registration. The application to request the cancellation of a deceased voter’s registration is on the Los Angeles County clerk’s website. Or you can call (800) 815-2666 and choose option 2.
— Death isn’t an easy subject, but Tufts University School of Medicine has developed effective exercises for teaching empathy to medical students
“Family doctors always talk about preventive care, like cancer screenings, nutrition, and vaccination. There’s a whole host of preventive issues we routinely bring up. And end-of-life wishes should be one of them,” says Amy Lee, M02, associate professor of family medicine at Tufts University School of Medicine.
By Christina Frank
No one likes to talk about dying—not even doctors, even though confronting death is a non-negotiable requirement of the job.
“Doctors in general are not very good at talking about end-of-life issues with patients,” says Amy Lee, M02, associate professor of family medicine at Tufts University School of Medicine. “Part of that is just our general cultural discomfort with talking about dying, but part of it is lack of education and training about how to do it well.”
Back in 2010, to address what they considered a significant gap in medical education, the Department of Family Medicine decided to require every medical student to participate in an experiential learning exercise about end-of-life decisions as part of their six-week family medicine clerkship in their third year. Earlier this year, Lee and Deborah Erlich, M07, associate professor of family medicine and family medicine clerkship director, published a paper in the journal Family Medicine evaluating three years of student reflections on the exercise. Students reported increased empathy for patients facing end-of-life decisions, and an intention to improve the way they support patients at the end of life.
Erlich points out that most clinical education on this topic was previously “opportunistic,” meaning that a student may have the chance to address end-of-life wishes with a patient as part of a hospital rotation, but not necessarily. “In the hospital there’s no systematic planning of which patient a student will see,” she says. “So, if they have a meaningful meeting with a dying patient in the hospital by happenstance, then maybe one student will have that experience around discussing a patient’s or family’s wishes at the end of life. But if they happen not to, they’ll miss that part of the education. We decided all students should receive training on this topic and graduate prepared to have these conversations.”
Using a booklet from the nonprofit organization Aging with Dignity called “Five Wishes,” each student is asked to privately fill out an advance directive for themselves. The idea is that by going through the process of thinking about what they would want at the end of their own lives, they develop a stronger sense of empathy toward patients. The wishes address practical concerns, such as who they’d want as a healthcare proxy, as well as medical and emotional concerns. They can specify under which conditions they’d want to discontinue treatment, if they’d like someone to be with them when they die (if possible), and what they’d like their legacy to be.
“In this case, students are not roleplaying having a real conversation with a patient—which is also critically important— but they are putting themselves in the position of walking in the patient’s shoes,” says Erlich. “That’s one of the things that defines empathy.”
The “Five Wishes” exercise is now one of many components in the medical school’s curriculum that address end-of-life care. Students in the preclinical years learn about caring for dying patients as part of a mandatory course called “Threads.” Other courses include patient interviews where patients and their family members talk about coping with illness, death, and dying. Clerkships for students in their clinical years hope to offer more opportunities for students to address end-of-life issues.
As family medicine physicians, Lee and Erlich think primary care physicians, especially, should begin discussing a patient’s end-of-life wishes long before they are known to be dying. “We’re family doctors, so we take care of patients throughout their lifespan,” says Lee. “We have long-term relationships with our patients and their families. It’s even more important in that trusting environment to be able to have these difficult conversations.”
To kick off a conversation with the students about this, Lee and Erlich informally ask the group if they think an 80-year-old should discuss this topic with their family doctor at their annual visit, to which everyone answers yes. “Then we say how about a 70-year-old, a 60-year-old, and continue down the lifespan by decade,” Erlich explains. We get down to people in their 20s and 30s and almost all of the students agree that end-of-life wishes should be discussed at annual visits for all adults.”
Lee says the early days of the COVID-19 pandemic made younger people more aware of how important it is to talk about end-of-life wishes, and that it is an issue that affects people of all ages.
“The pandemic resulted in the deaths of younger, relatively healthy people. I think our students recognized that it would be a good idea to at least think about a healthcare proxy, for example, who would make decisions for you if you were incapacitated,” Lee says. “Family doctors always talk about preventive care, like cancer screenings, nutrition, and vaccination. There’s a whole host of preventive issues we routinely bring up. And end-of-life wishes should be one of them. Unfortunately, all human beings inevitably will die, and better to have a death that is prepared for and incorporates what the patient wants.”
The Student Perspective
These innovations in the School of Medicine’s curriculum means that future physicians will be able to better empathize with and support patients and their families as they make end-of-life decisions.
Christianne Gonzalez Davidson, M24, is finishing up her third year in medical school and is planning to go into family medicine. She says she found the “Five Wishes” exercise initially disconcerting, but ultimately empowering.
“On the one hand, it shook me a bit to reflect on the hypothetical situations presented—such as myself in a coma without hope of recovery or being on life support. Having seen patients in these conditions with their loved ones and imagining myself and my family in their shoes was a very humbling experience. But then I realized that this exercise made me feel not only empathy for patients in this position, but also a sense of autonomy, and that’s something I hope to be able to offer my future patients as well.”
