When it comes to end-of-life wishes, a new study has found that while most people have end-of-life wishes, only a little over a third of them actually get them fulfilled. That is even more true with rural residents, researchers said.
Lula Reese said she didn’t have to ask her mother what she wanted as she neared the end of her life – she just knew.
“She told us she didn’t want to live with any of her children,” Reese said of her mother, Lula Simms. “She didn’t want to be a burden on any of us. We never talked about what she wanted. We just knew.”
Lula Simms lived in rural Bastrop, Texas , population 10,434, all her life and turned 100 in November, 2022. For the last two years of her life, her eight children cared for her in her own home with the help of hospice.
“She was in hospice for two years,” Reese said. “One day, she was different – she had stopped eating and she wasn’t the same. We took her to the hospital, and they told us she was transitioning.”
Simms died in February 2023, just a few days after her children rushed her to the hospital. For Reese, making sure that her mother’s wishes regarding the end of her life was never something that was written down. It was just something the family knew – her mother wanted to stay in her own home as long as he could. With the help of hospice, her family was able to make sure those wishes were met.
A new study from St. David’s Foundation in Texas has found that when it comes to end-of-life care, most Texans want to die at home (76%), and to not be a burden to their family (77%). But only one in three people surveyed said their loved one’s wishes were honored. Of those who are least likely to have their end-of-life wishes followed are rural residents, the study found.
Only 37% of the survey respondents said their loved ones died at home. Close to half of them (47%) said their loved one faced challenges related to their care – from problems with insurance coverage to facing cultural or language barriers.
Andrew Levack, senior program director with St. David’s Foundation, said there are a number of reasons why ensuring a rural loved one’s wishes are met may be difficult. Key among them is that conversations about the end of life just don’t take place.
“I think a big part of it is that those conversations and that planning around how to make (end-of-life wishes) happen don’t necessarily take place,” he said in an interview with the Daily Yonder. “One of the interesting things the study found was how few conversations respondents had with their doctors around plans for end of life. I think people have an idea of what they would like, but it takes some active planning and advocacy to make that happen. In the absence of that, I think people don’t realize what their ideal scenario would be.”
Dr. Kate Tindell, medical director for Austin Palliative Care and Hospice, said most of the hospice referrals her program has come from hospitalizations. That presents a problem for rural residents who are further away from hospitals and more isolated, she said.
“The rural community I think tends to already have limited exposure to health care,” she said in an interview with the Daily Yonder. “I think (the Covid-19 pandemic) really compounded that for them. Rural communities were suffering from the closure of healthcare access. The strain on health care from Covid makes it feel like we’re seeing them have less and less access.”
Lack of access can lead to a less intimate relationship between patient and doctor who could discuss hospice with an elderly patient.
“People have really disjointed health care now,” she said. “We’ve sort of lost that sense that there is a captain of the medical ship who is aware of all the moving parts and is giving the patient that guidance. I think that really causes people to not have the kind of relationship that would allow them to have that kind of conversation (about end-of-life wishes) the way they would if they had seen the same provider every single time for 10 years.”
Sometimes, it falls to non-profit organizations to get information about making end-of-life decisions to older rural residents. Sumai Lokumbe, is one of Bastrop’s OWLs – or Old Wise Leaders. She works with the aging population in her area to make sure they get the care they need. Many people in her community are unaware of what hospice and palliative service is or have a misunderstanding about what end-of-life care entails.
“I explain to people exactly what hospice does and what it is,” she said in an interview with the Daily Yonder. “They come in to make sure you’re not in pain and make you comfortable and take some of the stress off the family members, plain and simple.”
In some instances, cultural differences create challenges to overcome. Many African Americans in her area face cultural beliefs that prevent them from having anyone but family care for loved ones as they age. Other African American community members may distrust a system that has previously not cared for them.
“In the African American community especially, there is a belief that you stay with your family,” she said. “But there’s also a lot of distrust of the system. They don’t have a lot of trust in things put in place for them by people who don’t look like them.”
For Lula Reese, hospice was a way for her family to care for her mother as she transitioned through the end of her life.
“We had heard of hospice, but we used to always think that hospice care meant that she was going to pass away in the next five or six days,” Lula Creek said. “But we learned that wasn’t the case… Hospice and helped us take care of her, like giving her baths and bringing her supplies when she ran out.”
Even without those final wishes in writing, the family was able to keep her in her home as long as possible, she said. Hospice helped them to care for their mother, as well as alleviate financial burdens they know she would have feared placing on them.
“We didn’t talk to her about hospice care, and you know, we didn’t talk to her about what she wanted to do in her last days, ” she said. “We didn’t find out about it until after we had her service. She had already written that her desire was just to live long enough to see her children be grown. Her youngest child is in their fifties, so she had everything she wished for. We never asked her if she wanted to go into a nursing home. We just knew that was not her desire.”
It was New Year’s Eve, and my wife and I were visiting my father in his long-term care apartment. He had been cautiously wandering around, waiting for a visit, when we arrived, something he’d been doing since my mom had died a year ago. He looked frail. The “surprise question” occurred to me: Would I be surprised if he passed away in the next year?
No. I wouldn’t.
After we’d spent some time together, I asked his wishes for the coming year.
“I don’t know,” he replied. “I’m 101 years old. I was married nearly 70 years and have finished my life. Marcel, I am very much afraid of dying. Will you ensure that I don’t suffer and that dying won’t take too long?”
I promised him I would try.
The second week of January, I received a call that my father had fallen and was in pain. He had no fracture, but he insisted he did not want to get up anymore. I drove the 120 km to his home, thinking about all of the possible scenarios. My first thought was to get him on his feet again, with enough analgesics to overcome his fear of falling. As a geriatricianson, I had always tried to keep my parents active and felt proud that they had enjoyed so many years together this way.
But would such encouragement fit the situation my dad was in now? He’d asked me to make sure dying didn’t take too long. Was it already time to consider death by palliative sedation? I felt uncertain. To qualify, he needed a symptom that could not otherwise be helped, and death had to be expected within two weeks.
When I arrived at his bedside, he repeated, “I don’t want to get up anymore,” and again, he asked me to help alleviate his fear of dying. I had to honour his heartbreaking request for a peaceful death. With a leaden soul, I went to the doctor on call — luckily his own physician — and asked for his assistance in ensuring a peaceful death. We discussed all options, acknowledging my father’s increasing frailty, despair and anxiety, and we agreed to start acute palliative sedation with midazolam, adding morphine according to the Dutch national protocol. I watched as the doctor prepared the equipment, feeling reassured by his calm professional acts.
My father could not understand the plan himself, but after an hour or so he woke for a few seconds and, with a frail smile, said goodbye to my sisters and me. We made a schedule for staying with him and I took the first turn. I sat next to him for two hours, and just after his second dose of morphine, he stopped breathing and passed peacefully away, just as he had wished. Sadness and relief turned to warm gratitude in my heart. Life had given us a sensitive and wise physician who enabled us to overcome what my dad and I had feared most.
***
In December of the same year, my 86-year-old father-in-law asked me to come to Antwerp and talk to him about the options for assisted dying. He had metastatic prostate cancer and had not recovered over six weeks of hospital care. He was bedridden with a toe infection and painful pressure sores. My reflex, again, was to involve geriatricians and try to get him on his feet. However, my father-in-law, an engineer by profession, had decided it was time to turn off his engine after losing hope for sufficient recovery. My wife and I explained to him what medical assistance in dying and palliative sedation could look like, as both are allowed under certain conditions in Belgium.
Without hesitation, he chose medical assistance in dying. He was very satisfied with his life, having experienced war, liberation, marriage, births, retirement and nice family holidays. In line with his story of life, he did not want to deteriorate further and end his life in pain and misery. We kept silent while he wrote his last will, then thanked us for everything and suggested we should now watch the Belgium versus Morocco World Cup soccer match.
When the game ended, saying goodbye was hard. We looked into his eyes, still bright, and shook his hands, still strong. We knew it was the last time. But his calm smile wordlessly assured me it was time to turn off my own geriatrician’s inclination to pursue mobility and functional improvement. Death was made possible within a week, and after ensuring that all requirements were met and speaking to each family member, his oncologist carried out the procedure carefully in the presence of his children.
***
Just two weeks later, our Spanish water dog, Ticho, made me reflect again on what’s needed most at the end of a long life. For 16 years, Ticho had been my much-loved companion and daily running mate. I had begun to dream he might become the world’s oldest water dog. However, his sad eyes now showed me that his life’s end was close, also evidenced by having nearly all possible geriatric syndromes: slow gait, repeated falls, sarcopenia, cataract, dementia, intermittent incontinence and heart failure.
Still, he came with me on short walks until, one day, he became short of breath, started whimpering and did not want me to leave him alone. Patting calmed him a bit, but I realized we needed to help him die peacefully instead of trying to mobilize him again. Though not comparable to the last days of my dad and father-in-law, there were echoes.
Our three adult kids rightly arranged a family meeting, as Ticho was their sweet teddy bear. We agreed to consult a veterinarian and ask for help with a good farewell. Next morning, the vet agreed with assisting dying. She said Ticho was the oldest dog she had seen so far, and she reassured us that it was the best decision we could make. Again, I felt very thankful for this professional and compassionate help. Ticho died peacefully after sleep induction and, together, my son and I buried him in our garden.
***
Strangely, although death in old age is as natural as birth is for babies, pediatricians seem much more involved in deliveries than geriatricians are in dying. These three encounters with death in my life made me feel I had fallen short so far as a doctor, having undervalued assisting dying at old age. How to guide people to a better end of life was largely left out of my training as a geriatrician. Like pediatricians, geriatricians prefer to embrace life. In geriatric practice and research, we tend to reach for the holy grail of recovery by improving functional performance and autonomy to enhance well-being for frail older people, rather than focusing on facilitating their well-being over their last days. In this tradition, I practised hospital-based comprehensive geriatric assessment and integrated care management, as this had proven effective in giving older people a better chance of discharge to their own homes.
In my research, I had steered a straight line toward longevity and improving autonomy, in accordance with the dominant culture in society and medicine. I had excluded older people with short life expectancies from our intervention trials and did not adapt outcomes to this stage of life. Even for our recently updated Dutch handbook on geriatrics, we did not describe death or dying in any detail. I served many older people in their last days and hours, but did so with limited experience, few professional guidelines and little legal leeway.
Now, having been helped so compassionately with the deaths of three beings close to me, I realize how rewarding it can be to switch clinical gears from recovery-directed management to dying well, and to do so just in time. Older people can show and tell us when they arrive at this turning point and are ready for ending life. I hope other physicians will realize, as I have, how important it is to allow death into a conversation, even a care plan, and to be adequately trained to do so. Perhaps we also need our own turning points as physicians to get ready for the delicate responsibility of compassionate and professional assistance in personalizing good death in old age.
The one big thing that people have in common is that we all will die, and we likely will experience the death of someone we love, too.
And yet despite this shared future, death can be hard to talk about, because it’s not an experience that anyone can report back from to say how it went. When you or a loved one starts approaching death, the existential stakes can go from theoretical to personal, sometimes feeling emotionally, physically and spiritually fraught.
That’s why it can help to hear the insights of people who see death all the time, because understanding it now can help us better process grief about others and feel more at ease when thinking about our own mortality.
I had conversations with palliative and hospice care physicians, nurses and social workers that comforted me, surprised me and challenged my own assumptions about death. Maybe they will for you, too.
Here are some of the biggest misunderstandings they shared with me about death and what the reality actually is:
The physical process of dying doesn’t look like it does in the movies.
This was a repeated theme among the experts I spoke with. Pop culture may have you thinking that death happens quietly and quickly, with eyes closing and arms crossed, but dying from natural causes often looks different in real life.
“My own dad said to the nurse, ‘I’m about ready to hang it up,’ and then he died minutes later. But that type of death is very uncommon,” said Penny Smith, a hospice quality manager and registered nurse in Washington state.
In her decadeslong career, Smith said she’s only come across a few instances in which people died quickly.
“It’s usually more of a process where they go into that unresponsive state, and there’s all kinds of things going on with their body. Their color’s changing, their breathing is changing and then they finally slip away,” she said.
Smith started posting TikTok videos about working in hospice care during the COVID-19 pandemic shutdown of 2020 and has since amassed around 640,000 followers on the platform. She uses skits and sound effects to educate people on what it’s like to be in the room with someone who is dying, covering topics like deathbed visions to the sounds that dying people make.
Common responses to her TikToks are comments of relief, acceptance and commiseration at seeing someone describe an experience that resembles how their own loved ones died.
“I, as a hospice nurse, have been with so many families where they were really disturbed by what they were seeing, or scared. And I would say: ‘That’s normal. We see that all the time.’ The relief is palpable,’” Smith said.
In one TikTok, Smith explains that when a person’s body is “shutting down,” it’s normal if they do not want water. A top comment on the video reads: “Thank you for this. My mom stopped drinking when we knew she was going to pass and I still felt like I should have tried to have her drink water more.”
Among all the physical processes of dying, Smith said the biggest misunderstanding she sees is when family members worry that their loved ones are dying of starvation because they’ve stopped wanting to eat.
“These are people who are already dying. They don’t need the food,” Smith said. “And when the family starts to try to force them or coerce them into eating just by, ‘Come on, just have a bite just to eat something,’ it just sets up so much stress between the family and the person.”
Similarly, families often worry that the use of morphine and other opiates will hasten the death of loved ones, according to Frances Eichholz-Heller, a senior social worker for the palliative care consult service at NewYork-Presbyterian/Columbia University Irving Medical Center.
“Some people will say to me, ‘Well, we had an uncle who was in the hospital dying, and then as soon as they put the morphine on, he died really quickly,’” Eichholz-Heller said. “I have to explain to them: ‘Well, he probably died really quickly because he was dying. He wasn’t dying because of the morphine, but they put him on the morphine to help.’”
Families can live with a lot of regret over what they should have done.
If you are seeking to support a loved one who is dying, be mindful of how your own fear and discomfort could impact what a dying person shares with you, said Dr. Aditi Sethi, a North Carolina-based hospice physician and end-of-life doula.
According to Sethi, some dying people try to talk about their experience with loved ones but the families dismiss it because of their own discomfort, using language like “You’re not dying, don’t worry about it.”
“So many times, loved ones have the most regret,” Sethi said. “They’re so terrified of losing their loved one that they can’t be fully present to their loved one at the time when they need them the most, really — to hold their hand and to really honor what they’re going through, and have a space to share what they’re experiencing in this epic journey they’re about to embark on.”
But if you had a strained relationship with the person before they were dying, don’t feel like you have to force a connection that is not authentic, either. “Your relationship with the dying person is personal, and if you didn’t have a good relationship, you are not obligated to go and be with that person,” Smith said.
It’s also important to provide space for people to be themselves when they are grieving, said Ladybird Morgan, a California-based registered nurse, palliative care consultant for the company Mettle Health, and co-founder of the Humane Prison Hospice Project nonprofit.
“I really ultimately believe that what happens is what needs to happen. And I see a lot of suffering for families that get left behind when they feel like they should have done something different,” Morgan said. “You grieve the way you’re going to grieve. You let go the way you’re going to let go. I tend to want to be careful about saying, ‘You should do X, Y and Z.’”
Not everyone wants silence or a somber mood when they are dying.
Health care providers and family members can make assumptions about what a dying person would find comfortable, without considering what that person truly enjoys. Some people may desire silence, but others may welcome raucous celebrations.
Smith recalled worrying about a football game party happening in the room of a dying woman until one of the patient’s adult sons reassured Smith that this was her passion.
″[The son] said: ‘Oh, my gosh, she was the queen of football parties every Sunday [with] everybody in the neighborhood. Yes, she loves this,’” Smith said. “I was new in my hospice career and making assumptions about what I thought a dying person would want. I thought they would want a quiet, dark room, and that’s not necessarily the truth.”
Not enough people plan or talk about how they want to die.
Most Americans say that given the choice, they would prefer to die at home, but about 1 in 5 deaths in the U.S. occur after admission to an intensive care unit. In the book “Extreme Measures: Finding a Better Path to the End of Life,” Dr. Jessica Zitter details what she calls the “end-of-life conveyor belt” — a type of care in which dying ICU patients receive painful treatments to be kept at alive at all costs.
“Unfortunately, by the time someone is on the conveyor belt, it’s often too late to talk to them about what they want. And then everybody is trying to play catch-up. And it’s hard to get it right when the chips are down and there’s so much emotion,” said Zitter, who specializes in palliative medicine and critical care.
“So my recommendation is to talk about these issues early on in life, maybe starting when you become an adult. Start to think about your mortality, and visualize how you would want things to go for you when you get into that stage of life, the end stage. Communicate honestly.”
“The people that I notice that have the least amount of distress are the ones … [who] have lived really fully, and that they can say to themselves, ‘I was here.’”
– Ladybird Morgan, a palliative care consultant at Mettle Health.
Filling out forms for so-called advance care planning goes a long way. But “it’s as important that you, number one, identify a person you trust — or two or three [people] — that can honor your wishes,” Sethi said, “and have the conversations ahead of time, before you’re in the state where you can’t communicate your needs and wishes.”
Some hospice workers recommended Five Wishes, an advance care planning program, as one way to get clarity on how you want things to go.
Morgan recommended playing a card game called GoWish with a friend, a partner or someone else you hope will follow your end-of-life wishes. “[The cards] have different statements on them about possibilities of what you might want or not want,” she said. “And you make stacks of the ones that you like, the ones that you know you don’t care about, and the ones that you’re not sure about.”
Someone playing the game may find it difficult to choose which cards represent their values, which is why Morgan suggests having two people play together, so that it can be a conversation starter.
Keep in mind that there is no one right way to die, and preferences may differ.
“There are people who feel that every moment of life is precious and that they value the length of life over the quality of life,” Eichholz-Heller said. “So they are willing to endure a certain amount of suffering to be able to be kept alive. Then there are other people who value quality of life over length of life. And they would rather focus on comfort, even if it means that they won’t live as long.”
There are still a lot of negative associations with hospice care, even though it can be helpful.
There’s a difference between palliative care and hospice. Palliative care workers help to make patients comfortable at any stage of their life if they’re suffering; hospice is a medical service specifically for people with a short-term life expectancy. While anyone living with a serious illness can seek palliative care, Medicare will help cover hospice care costs for people in the U.S. if their health care provider certifies that they are terminally ill and have six months or less to live.
Some people wrongfully assume that going into hospice automatically shortens the life of a patient. Smith said she has been called a murderer for working in hospice care, adding that the worst myth about hospice workers is that they kill their patients.
“People think that when you go on hospice, it’s a death sentence and that death is imminent,” Smith said. She cited former President Jimmy Carter, who entered hospice care in February and is still alive today, as one prominent example of how that is not always the case.
In fact, research shows that seeking palliative care at an early point can improve quality of life. Published in 2010, one study on advanced lung cancer patients found that offering early palliative care on an outpatient or ambulatory basis led to fewer clinically significant depressive symptoms and a longer median survival.
“When patients are suffering, they use so much of their energy just to fight the suffering that if we can make them comfortable, they sort of stabilize,” Eichholz-Heller said. “And a lot of times, it really helps them to live longer.”
Hospices can differ in their approach to care and the additional services they offer. There are resources that can help you figure out the right questions to ask to select the best hospice for you or a loved one.
We can’t control death.
There can also be a misunderstanding about the medical community’s ability to defeat death — even from health care workers themselves.
“The biggest misunderstanding that I see [among] patients, families and even health professionals around the issue of death is that we think we can control it,” said Dr. Solomon Liao, a UCI Health physician in California who specializes in palliative medicine and geriatric pain management.
“We believe that with all of our machines, technology and medications, we can determine when or even if that happens. Instead of accepting death as a natural endpoint of this life, we get depressed and even angry when it happens. We avoid planning for it or even talking about death, and then are shocked when it happens.”
The reality is that we can’t control death ― and we’ll all experience it at some point. “The people that I notice that have the least amount of distress are the ones — not so much that they’ve controlled every element, but that they have lived really fully, and that they can say to themselves, ‘I was here,’” Morgan said. “And people around them can honor that and acknowledge that like, ‘Yeah, we saw you, we felt you.’ … And that was so important for them, allowed a deep relaxing into what was coming next.”
At the same time, it’s OK not to be ready.
Morgan said many conversations around death and dying have focused on making sure someone is ready and not as much on cases in which a person loves life until the last minute and is not ready to go.
“It’s OK to miss life,” she said. She recalled talking to a client about how he knew everyone else was going to be all right after he died, and how that was heartbreaking for him.
In our conversations, hospice and palliative care providers suggested that it’s helpful to keep an open mind about death — leaving space for it to be “both and,” as Morgan told me.
Death can be devastatingly sad, but it doesn’t only have to be a somber occasion, as Smith’s TikTok skits show. Dying may be painful due to a terminal illness, but it’s not inherently so, Sethi said.
“It can be positive and hard,” Morgan said. “It can be, ‘It was exactly what needed to happen, and they had a beautiful death’ and ‘Wow, was that hard to see them go because I would’ve loved to have had them around for 10 more years.’”
Suicidal thoughts — also called suicidal ideation — include wishes, thoughts, and preoccupations with death and suicide, according to StatPearls.
Suicidal thoughts can fluctuate in intensity and duration. They tend to follow a “waxing and waning” pattern, where they’re more intense at certain times and level out — or possibly subside altogether — during others, the authors of the report noted. Sometimes they’re fleeting, passive wishes to simply cease to exist, and sometimes they’re persistent and overwhelming thoughts of harming oneself.
“When such thoughts first occur, they often feel intrusive and frightening,” says Amy Mezulis, PhD, a licensed clinical psychologist and co-founder and chief clinical officer at Joon Care, a mental health care platform for teens and young adults. “For some individuals who struggle with depression or suicidal thoughts for a long time, they can start to feel almost normal,” she says.
The types of suicidal thoughts one experiences can vary from person to person and are considered either passive or active in nature, per the aforementioned report.
Passive Suicidal Thoughts
Passive suicidal thoughts are when someone loses the motivation to live, but they do not have a plan in place to end their life, according to Salt Lake Behavioral Health in Salt Lake City, Utah. “These can be thoughts such as wondering what it would be like to be dead or to not wake up in the morning,” says Dr. Mezulis.
Even though someone with passive suicidal thoughts doesn’t have a plan in place to end their life, these thoughts could eventually progress into active suicidal thoughts and lead to a suicide attempt, per the aforementioned StatPearls report. Passive suicidal thoughts should be taken very seriously.
Active Suicidal Thoughts
Suicidal thoughts are considered active when someone loses the will to live and has a plan in place to end their life, per Salt Lake Behavioral Health.
“Active suicidal thoughts refer to thoughts that focus on methods and plans for dying by suicide,” says Mezulis. “These can be thoughts such as considering different suicide means or making a mental plan for dying by suicide.”
Causes and Risk Factors for Suicidal Thoughts
“Suicide is complex and there is never a single cause,” says Jill Harkavy-Friedman, PhD, the senior vice president of research for the American Foundation for Suicide Prevention. “There are many potential contributors that may combine to create or increase risk.”
Factors that could raise your risk for suicidal thoughts, per Mayo Clinic, include:
Feeling hopeless, worthless, lonely, or socially isolated
Experiencing a stressful life event, such as the loss of a loved one or financial problems
Having a mental health condition like depression
Having a substance use disorder
Having a chronic disease, chronic pain, or terminal illness
Having a history of physical or sexual abuse
Family history of suicide
Having a family history of mental health conditions
Being lesbian, gay, bisexual, or transgender without a supportive family or living in hostile surroundings
Having prior suicide attempts
Signs and Symptoms of Suicidal Thoughts
The warning signs that someone may be having suicidal thoughts, per Mayo Clinic, include:
Talking about suicide and openly wishing to die or be dead
Obtaining the means to end one’s life, such as stockpiling pills or purchasing a gun
Withdrawing socially and expressing a strong desire to be alone
Having mood swings, such as feeling emotionally high one day but down and discouraged the next day
Fixating on death, dying, or violence
Feeling hopeless or trapped in a situation
Increased drug or alcohol use
Changing their usual routine, including sleeping and eating habits
Experiencing severe anxiety or personality changes
Engaging in risky behavior, such as reckless driving or substance use
Giving away personal belongings, drafting a will, or getting their affairs in order when there’s seemingly no logical reason for doing so
Saying goodbye to friends and family as if they will never be seen again
How Suicidal Thoughts Affect Your Health and Well-Being
Suicidal thoughts can take a serious toll on your emotional and physical well-being, in addition to heightening your risk of dying by suicide or injuring yourself in a suicide attempt, according to the CDC.
The human brain can only process so much information at a time, says Mezulis. So when a person is experiencing constant suicidal thoughts, much of their cognitive and emotional energy is consumed by them, she says.
“That can be exhausting, both psychologically and physically,” Mazulis explains. “Persistent suicidal thoughts can impact mood and health, contributing to a cycle of negative mood and suicidal thoughts that can be difficult to interrupt.”
The most serious consequences of suicidal thoughts are attempted suicide or death by suicide. People who survive a suicide attempt can be left with serious physical damage to their bodies that can be debilitating or even permanent, according to Cross Creek Hospital in Austin, Texas. The effects can include:
Scars
Broken bones
Hemorrhage, or heavy bleeding
Organ failure
Brain damage
Paralysis
Coma
Prevention of Suicidal Thoughts
Suicidal thoughts are often part of a larger issue, such as an underlying mental health condition like depression, substance use disorders, or schizophrenia, according to research. “Treating these underlying mood conditions [or other mental health conditions] can help prevent and reduce suicidal thoughts,” says Mazulis.
But not all people who experience suicidal thoughts have a mental health condition — stressful life events such as relationship problems, the death of a loved one, or eviction can lead to suicidal thoughts, too, according to the National Alliance on Mental Illness. Similarly, addressing those contributing factors (through strategies like talking to a mental health professional about those stressors and finding ways to manage the resulting feelings of distress, for instance) can help lessen suicidal thoughts, too.
Other factors that can protect against suicide and suicidal thoughts, per the CDC, include:
Having access to high-quality, consistent healthcare for mental and physical health conditions
Developing effective coping and problem-solving skills
Focusing on your reasons for living, such as family, friends, or pets
Having or developing meaningful connections with others
Having a strong sense of cultural identity
Getting support from friends and family
How to Cope With Suicidal Thoughts
Suicidal thoughts should always be taken very seriously. Don’t wait to get help for yourself or a loved one who’s considering suicide.
“If you feel like life is not worth living, notice changes in your thoughts and behaviors that make it hard to keep going, or you feel depressed or hopeless, it is important to trust your gut and take action,” says Dr. Harkavy-Friedman.
If you feel like you or a loved one are in imminent danger of suicide, call 911 for emergency help. For immediate crisis assistance from a trained counselor, you can reach the free, 24/7 988 Suicide and Crisis Lifeline by calling or texting 988, or the free, 24/7 Crisis Text Line by texting HOME to 741741.
If you feel you’re not in immediate danger, you should schedule an appointment to see your doctor or therapist to talk about what you’re going through, according to Mayo Clinic. They can help you determine the severity of your suicidal thoughts and come up with a treatment plan to manage them.
Treatment options for people experiencing suicidal thoughts, per Mayo Clinic, may include:
Psychotherapy Also called “talk therapy,” psychotherapy involves working with a licensed therapist to explore the root causes of your suicidal thoughts and learn skills to help you manage your emotions.
Medications These could include antidepressants, antipsychotics, or anti-anxiety medication if you have a mental health condition. Managing the symptoms of a condition can in turn lessen suicidal thoughts.
Addiction Treatment If you have a substance use disorder, getting treatment for it can reduce suicidal thoughts. This could include detox, addiction treatment programs, or self-help group meetings.
Along with professional treatment, practicing self-care can help you feel better and can reduce thoughts of suicide over time, says Harkavy-Friedman. Some self-care strategies that can help are getting regular sleep, exercising, eating a nutritious diet, spending time with friends and family, and making time for things that bring you joy, she says.
You could also reach out to family members, friends, or members of a faith community, for instance, when you feel like you need support. Having a strong support system can help lower your risk for suicide, according to Mayo Clinic.
In addition, it could help to reach out to one of the suicide hotlines described above, even if you don’t feel like you’re in immediate danger. A trained crisis counselor can offer free and confidential emotional support and connect you to resources that could help.
The AFSP is committed to raising awareness about mental health and suicide, and funding research related to suicide and suicide prevention. They offer specific resources for anyone who is experiencing thoughts of suicide, has survived suicide attempts, has lost a loved one to suicide, or is worried about someone else with suicidal thoughts.
The 988 Suicide and Crisis Lifeline provides 24/7, free, and confidential support for people in distress, suicide prevention and mental health crisis resources, and best practices for health professionals in the United States. Dial 988 to speak with a trained crisis counselor who can help you if you or a loved one is experiencing thoughts of suicide. They also have a chat tool for those who are deaf or hard of hearing or who may otherwise prefer a chat option.
The NIMH is the lead government agency for research on mental health conditions. It provides a “Suicide Prevention” resource for people experiencing thoughts of suicide or for their loved ones.
— To start, you will probably be unprepared, no matter how much time you have to get everything in order
Conversations about money shouldn’t come first, but it shouldn’t come last either, and as difficult as it can be, opening up about who’s paying for what (or not) does in fact get easier with time.
When my brother suggested that my father move in with him last year, it seemed like a no-brainer.
Dad was almost 91 then, and couldn’t really live alone any more. My husband and I (and our grouchy teenage son) lived near Dad, but we were feeling the strain of grocery runs and doctor appointments — and worrying about our son’s iffy high school grades.
If Dad moved in with my brother and sister-in-law, he’d have support and care; we’d be able to focus on getting our son from high school to college; and my brother would get a little extra income. A win-win-win!
So why didn’t things go as planned?
Hello, Blind Spots
Turns out that despite our best intentions (and you know what they say about good intentions), we were woefully unprepared — like many other well-meaning, middle-aged “kids” who take in a parent.
“Despite our best intentions (and you know what they say about good intentions), we were woefully unprepared — like many other well-meaning, middle-aged ‘kids’ who take in a senior parent.”
That surprised me. If you’re in the middle of a health or financial crisis, as many families are when they take in an older parent, of course there’s no time to stop and think. But we had a few months to lay the groundwork for this transition — the timing, the cost, the logistics.
While those practical issues are important, many families experience a kind of caregiver shock because they underestimate the impact of the move on their personal time and space, their relationship with the parent/grandparent, and even the emotional dynamics within the immediate family itself. “A lot of people worry about the big things,” FitzPatrick says. “Like, what if Mom falls in the middle of the night? But it’s really the little things that build up.”
Given that multigenerational households in the U.S. are increasing, you’d think our collective ability to foresee some of these problems would also be expanding. But although over 50% of those living with adult relatives other than a partner or spouse say it’s convenient / rewarding all or most of the time, 23% say it’s stressful all or most of the time, and 40% say it is stressful some of the time, according to a 2021 survey by the Pew Research Center.
Surprise #1: Meet Your New Roomie
Why, exactly, is it so hard to adjust to the realities of shared living quarters with your aging mom or dad? Because . . . after decades of not living with your parent(s), FitzPatrick says, suddenly you’re roommates, with all the intimacies and frustrations that come with that arrangement. Like: Where do you put the used pull-up diapers? Is there a senior Diaper Genie? Should you just use a regular Diaper Genie?
Sorry to get right to the nitty-gritty, but these are the things that come up.
So, while rearranging the furniture and getting your parent to their physical therapy appointments is essential, also brace yourself for a string of minor irritations in the day-to-day that can really fry your nerves.
Surprise #2: Past Is Still Present
Making the roommate vibe worse is that your new roomie is actually your parent, and you’re not starting with a clean slate; you’re carrying some baggage. Whatever your traditional patterns are with your mom or dad, they don’t go away just because now they’re depending on you. As FitzPatrick put it: “The dynamics are so wonky.”
“Once your elderly loved one roommate moves in, everything gets magnified.”
Wonky is as good a word as any to describe how convoluted it feels like to deal with an aging parent who no longer calls the shots — yet they may think they do, or they may try to, or you may let them — or you may find yourself in a constant state of irritation and guilt because — wtf!
You know?
So while it’s tough to anticipate what the likely tension points might be, it’s not impossible. You just have to be honest with yourself — because once your elderly loved one roommate moves in, everything gets magnified. Being aware that these complicated feelings are naturally going to arise, in one way or another, can help you to spot them and — maybe — find more rational (or compassionate) ways to ease the situation.
Getting therapy is also a thought.
Surprise #3: Mind the (Expectation) Gap
When a senior parent moves in, one of the things you do to age-proof the house is to remove tripping hazards: slidey throw rugs, say, or your kid’s skateboard that lives in the foyer.
In the same way, you have to find a way to identify and articulate hazardous intra-family expectations so they don’t knock you sideways.
One of the biggest expectation gaps in families, FitzPatrick says, is around downtime. I thought she was going to flag money as a hotbed of miscommunication and crossed expectations. Because it is. But downtime can be even worse in a family caregiving situation because expectations can get muddled on so many levels.
My good friends know that my end is near. Several of them have flown from far away to see me in Texas. They come for an hour or two of conversation, and then they fly home. That’s an expensive visit, and time-consuming for them. Why aren’t they satisfied to see me over the internet? I offer them that way out, but they insist on the trip. Why?
My friends tell me the internet is not a healthy place to develop friendships. I agree.
In my latest meeting with one friend, I gained a growing understanding of him at this stage in his life, and he of me, from subtle clues in our posture, expressions and body language — clues we could not have captured on the web. We kept close eye contact most of the time — something we could not have done on the internet. In the end, I felt that soul had touched soul.
Another recent visitor and I both changed as we came to know each other better. He told me he had shelved a beloved project to devote time to his business. We had little need for words after he told me of his decision. By contrast, the web would have allowed us hardly anything but words to go on.
Yet another friend told me that he had come to value in-person meetings because the business he had started was entirely in virtual space, and he saw its shortcomings every day. During his business meetings, he tells me, he suspects that many of his workers are multitasking — head and shoulders pretending to be paying attention, hands below camera range busy on other projects. They would not get away with that in person, he says. Because worries like this bother him every day, he sets a higher value than ever on seeing friends face to face. In-person encounters have become more intense for him, more special than they were before. Today, he wastes no time on small talk when we meet. We are each focused on the other.
I am not against the medium as such. I have taught on Zoom, and I know its strengths and weaknesses. I also understand that internet technology allows us to make and maintain connections that we would otherwise be denied. I know a stay-at-home parent with a large family who rejoices in her Zoom and Facebook connections. Without technology, she would be isolated, as parents were in the old days. Being physically together might be the gold standard for connecting, but we must not discount the value of other options. Whatever form of connection we are allowed is a gift.
But web-based connections are simply not as good as in-person ones. Technology tempts us into being satisfied with pseudo-friendships, and these can be dangerous. You’d be a fool to marry or promise sex to someone you had never met off-screen. That’s because the internet can’t reliably protect us from falsehood. Now, artificial intelligence has become a champion at falsehood. It can create false images of people — even of my friends — and get me to believe they are real.
Friends should be able to trust each other with secrets. Trust is at the heart of friendship, and trust can’t get started without privacy. The most valuable things friends say with each other must be safe behind a wall of “Don’t tell anyone else.” My wife and I need to process a rift in a colleague’s marriage to be clear about our own, but we don’t want the colleague to know what we are thinking. My wife and I are best friends, so I can trust her to keep our conversation private. But nothing has ever been private on the web. If I dare not tell you the truth of my heart, you cannot be my friend. But I don’t dare tell the truth of my heart to anyone I know through the internet. It follows that I cannot have friends through the internet.
I am delighted that my friends are flying in to see me from far away. They warm my soul. And having such good friends keeps me honest with myself and others. We do not come together to say goodbye. We come together to know each other better, right now, as we are at this hour, today. Each visit brings a growth of understanding in real time. I am very lucky to have such friends.
They are right to come in person. In actual presence, they can hold my hand, stroke my brow. At the end of my life, if they were trying to see me through the internet, they would fail. That dying thing will not be me. I am who I am through my actions, and dying is not an action. It is a happening. At the end, I will have no comfort in being observed. At the end, I cannot be seen. I want to be touched.
With the Earth screaming for attention through increasingly severe natural disasters, people are realizing our planet is vulnerable. After centuries of believing this world is immune to the ravages of human exploitation, abuse and disregard, a new movement some refer to as “greening” has dawned. With its spread and growing sophistication, more people are acting in novel ways to restore and nurture the long-term health of the planet.
Recently, awareness that this gorgeous planet on which we live and on which we are dependent has spawned interest in green, natural or conservation burials, and human composting.
Often misunderstood to be one and the same, green—or “natural”—burials are closer to Indigenous and ancient burial practices in which bodies are returned to the earth or burned in funeral pyres with no toxic chemicals introduced into the soil or air, and using biodegradable containers. Conservation burials go a step further, with the model calling for cemeteries to operate under the stewardship of conservation organizations, such as land trusts, and comply with protocols that ensure no harm is done to the surrounding plant and wildlife ecosystems.
Human composting steps up to the highest level of “green” and involves a process that accelerates and abbreviates the up to 20 years required for a buried human body to decompose naturally. Through applied biological science, the conversion of human remains into soil, known as human composting or more technically as natural organic reduction (NOR), upends the conventional funeral industry’s environmentally destructive methods.
Bioneers, a nonprofit organization founded in 1990 in New Mexico by social entrepreneurs Kenny Ausubel and Nina Simons, maintains an active presence and leadership team in the Bay Area. The organization serves as a hub, offering workshops, community conversations, a full complement of social media productions that include radio, podcast and book series, a national conference and, through the local Bioneers Network, third-party media projects such as Leonardo DiCaprio’s movie, The 11th Hour, and Michael Pollan’s best-selling book, The Omnivore’s Dilemma.
This year’s Annual Bioneers Conference in April featured a robust roster of experts, keynote speakers and artists joined by thousands of civically active people on the UC Berkeley Campus and in venues across downtown Berkeley. Recognizing the commonality to all people of the death experience and with avid interest in “good deaths” along with preserving the planet’s longevity for future generations, the conference, Revolution from the Heart of Nature, included leaders in the areas of human composting, green burials and honoring the Earth as a final act.
Bioneers frequently gathers experts and composes panels who discuss specific, highly relevant-to-the-moment topics. The curated conversations hone general programs according to community interest and address anything from restorative food systems to youth leadership in the environmental movement to health care. Increased public awareness resulting from the programs sparks further discussions and activism, sometimes leading to solutions for eradicating obstacles to greater justice and equity, especially in marginalized communities.
“Contemporary culture has a hard time with death and dying,” says Bioneers President Teo Grossman. “This is true spiritually as well as practically, and it’s a conversation many would simply rather not have. As we know, there is literally no way around it. As we reckon with the impact humanity is having on the planet, exploring innovative approaches to death and dying should naturally be part of that conversation.”
Bioneers’ mission is to offer a public platform for people working on revolutionary solution-seeking projects who perhaps don’t have the bandwidth to do their own outreach to the press, Grossman says. While not claiming to be an expert, he says, “Our relationship with the natural world as humans, and our resulting actions, are clearly of significant importance. Innovative projects and ideas regarding practices around death and dying support extending that conversation to ‘new’ areas. I say ‘new’ in quotes because, as I’m sure the experts in this field have mentioned, the idea of integrating death and dying with nature and natural systems is probably as old as the idea of human rituals—and it’s only relatively recently that it has been dis-integrated.”
In light of Grossman’s earnest step back to remove himself from the limelight, it’s best to turn to one of the experts from the annual event to learn more about the green death movement and the level of interest in the Bay Area.
Katrina Spade, the founder and CEO of Recompose, a licensed, green funeral home based in Seattle, says there is strong interest in innovative death care and human composting specifically.
“This is not just people wanting to return to the Earth,” Spade said. “I love natural [green] burial, but if that’s all people wanted, it would be rising faster in popularity. Human composting lets you approach the whole thing in a way that feels new, even though nature is doing the work. The Recompose process is science coupled with an approach to death care that’s fresh, acknowledges death occurs and remembers that all of us have a capacity to be a part of the experience in a deeper way than might have been allowed by the conventional funeral industry.”
Recompose began accepting bodies for human composting in December 2020. In a nutshell, the process involves placing the body in an eight-foot-long steel cylinder filled with wood chips, alfalfa and straw. The mixture is calibrated for each individual and once the vessel is closed, the body’s transformation begins. During the next 30 days, the Recompose staff monitor the moisture, heat and pH levels inside the vessels, occasionally rotating them, until the body is transformed into soil. The soil is then transferred to curing bins, where it remains for two weeks before being tested for toxins and cleared for pickup. Eight-to-12 weeks after the process begins, the human soil can be used to enrich a garden, donated to a conservation organization to be used on privatized land or spread over multiple locations.
A composted body produces approximately one cubic yard of soil, an amount that fills a pickup truck bed and weighs upwards of 1,500 pounds. Importantly, and a reason many people are gravitating to NOR, is that the practice avoids conventional burial or cremation, which collectively adds one metric ton of carbon dioxide, per body, to the atmosphere. Additionally, the Recompose process does not use up valuable land or pollute the soil, and reduces contributions to climate change related to the production and transport of headstones, caskets, grave liners, urns and other items. It’s estimated the carbon output from a year’s worth of cremations in the United States is equivalent to burning 400 million pounds of coal.
“Some people say, ‘Composting humans has happened forever,’” Spade says. “But actually composting is a process that is by definition human-managed natural decomposition that is accelerated. Composting in any industry is something people are doing, not de-composting happening out in the wild. I think that’s a helpful distinction. Natural burial is just about a perfect solution for our dead, but because it takes land, it’s mostly a rural solution.”
She adds, “With composting, it’s possible to serve many more people in cities, because it doesn’t require the land of conventional burial or the time of natural burial that happens in the ground. Depending on soil quality and the climate, it takes years to decompose or desiccate a human body. With NOR, we’re transforming the human body inside of a highly managed vessel system—adding oxygen via a basic air pump and the exact recipe of plant materials that balance carbon and nitrogen so that the body will break down in a relatively short amount of time. We’re also monitoring for temperature because we want to make sure the material is safe for use on plants.”
The most common question Spade is asked about the process involves the bones. The mulch-like material at the end of the first 30 days still has bones, along with any non-organic matter, such as a titanium hip. The bones are reduced, basically pulverized as they are in a cremation, and turned into a sand-like substance. Inorganic materials are recycled, if possible. Once all the microbial activity is complete and the soil dries out, she says the remains scientifically, biologically and by look and feel, resemble compost a person might buy at a nursery.
Lynette Pang is a Bay Area resident, passionate gardener and an early investor in Recompose. After more than 20 years working in the investment management industry, she decided the second half of her life would involve something revolutionary. She began reading books on death, dying and grief, including From Here to Eternity: Traveling the World to Find the Good Death, by Caitlin Doughty.
“The book is a treasure,” Pang says. “But one chapter stood out: it was about something called the Urban Death Project. Wanting to learn more, I turned to the internet and learned about Recompose, formerly called the Urban Death Project. The concept of human composting was right up my alley. It just makes sense. I truly believe the practice of human composting will change, and maybe even save, the world. It is an investment in hope.”
Pang says she plans to participate in Recompose and hopes taboos surrounding death will diminish and that people will speak freely about how they want to die. “We are born, we live and then we die,” she says. “To me, it’s just that. When it is time to make my exit, whether that is tomorrow or many, many years from now, I shall be gifted to the earth as glorious, black gold.”
To do so, at least until 2027, Pang and other Californians will have to travel to Seattle.
“California is a great example of what’s holding NOR back,” Spade says. “The regulatory law passed in 2022 authorized NOR, but then there was a four-year regulatory period tacked on. How could it take four years to write regulations around NOR? Washington [state] was first to legalize the process, and we have two agencies that wrote regulations that are straightforward and make everything safe. Washington passed the bill in May 2019 and it went into effect May 2020. We did it first and had to do it from scratch, but other states could look to Washington [to write their regulations].”
She points out it takes a fair amount of capital to get a facility up and running, and adds that “any type of funeral care isn’t something you can snap your fingers and have up and running instantly.” In the meantime, Spade dreams and plans to open and direct facilities similar to Recompose’s Seattle home base in the top 12 urban centers in the United States. Conversations to franchise the brand and system to funeral homes and cemeteries have begun as the leadership team structures licensing agreements.
Spade recounts a favorite client story. “It’s about a person named Wayne who died and his sister brought his remains home to where he gardened his whole life. His neighbors and friends came with five-gallon buckets and took some of him home to their own gardens.” Spade says half of the families bring a truck or trailer, pick up the soil and take it home; the other 50% choose to donate it, through Recompose, to conservation efforts. “We have land partners that are conservation trusts owned by nonprofits,” she says. “Clients can donate soil to that trust so it is used in the forest to nourish the land. Families can go visit those places.”
A more universal story is the number of people who learn about human composting and green burials and say, “I want that.”
“As I began to grow Recompose, it became clear again and again that there was a lot of interest out there for options in funeral care that are sustainable and aligned with the planet,” Spade says. “Having your last gesture be a good one on the Earth, they say, is important.”
