[W]hen states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.
“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”
Here are 5 things to know about the article.
1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.
2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.
3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.
4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.
5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.
Paperwork including a living will and health care power of attorney can convey your treatment preferences if you are ever unable to make medical decisions for yourself.
[A]s a nurse, Kim Von Asten of Dousman, Wis., knows it’s important to document how you want to be cared for at the end of your life, or when you can no longer speak for yourself because of a major illness or accident. She has seen too many families agonizing at a hospital bedside, trying to decide whether a loved one would want to be taken off life support.
But a few years ago, she realized she had multiple copies of her own advance directive “just laying around the house.” During routine visits, her doctor would ask if she had one. “I’d say ‘Well, they’re at home somewhere and I have no idea where I put them. Just give me another copy,’” says Von Asten, 52. “Then I’d fill out that copy, and who knows where I’d end up putting it. I finally thought to myself, if something ever did happen to me, I couldn’t find them, and my family would never be able to find them.”
Like Von Asten, you may think you’ve done your duty by filling out an advance directive listing your preferences for end-of-life care, such as whether you want aggressive treatment or just pain management, and naming a relative or family friend as a health care agent to express your wishes. But that may not be enough. You still need to make sure your paperwork will translate into reality. That means ensuring that your family fully understands your wishes, updating your directive regularly and making the document easily accessible to those who need it.
“People think that ‘Well, because my family knows what I want, I’m covered,’ ” says Judith Schwarz, clinical director of End of Life Choices New York, an advocacy and counseling agency. “But that’s often not the case at all.” If you haven’t created an advance directive or named a health care proxy, or your loved ones can’t find your directive in an emergency, you run a higher risk that your wishes won’t be honored. “Once you get caught up in the treatment train, it’s hard to get off,” Schwarz says. In an emergency room, she says, “the default position is to treat first and ask questions later.”
Sharing Your Wishes
If you don’t already have an advance directive, create one now—and share it widely. An advance directive, which usually refers to a living will and a health care power of attorney, should document your preferences for medical treatment in an accident or at the end of your life, plus name a health care agent to make decisions on your behalf if you’re incapacitated. Find a form for your state in the advanced care planning section of the National Hospice and Palliative Care Organization or at aarp.org/caregiving (type “advance directive forms” in the search field).
When you’ve completed your advance directive, make multiple copies, says Schwarz. Give them to family members and all the providers on your medical team. Keep your copies where they can be easily located. Paramedics often are trained to check a refrigerator door for a do-not-resuscitate order—so if you have one, tape it there. “Your documents are like nuggets of gold to caregivers left wondering, ‘How do I do this well?,’ ” says Paul Malley, president of Aging with Dignity, a nonprofit that advocates for end-of-life planning. “You want to tell as many people as possible that you’ve made your decisions and where your records are kept.”
If you’re a caregiver for someone who is seriously ill or frail, ask a health care provider about a physician order for life sustaining treatment, or POLST, form, in addition to the directive. The POLST form is a medical order created with a health care provider so that medical personnel know someone’s wishes in an emergency situation. Your loved one can specify if he or she wants resuscitation or other life-sustaining treatment, hospitalization, comfort care or something in between. Search for state-specific information.
Make sure your loved ones are clear about your wishes and willing to carry them out. Start by holding a family conversation that includes as many people as possible, including adult grandchildren, says Marian Grant, a palliative care nurse practitioner and senior regulatory adviser with the Coalition to Transform Advanced Care, a Washington, D.C., advocacy group. State your preferences: Do you want to be kept alive on a ventilator? Are you willing to live in a nursing home?
Once you’ve shared your preferences, ask a trusted relative or friend to be your health care agent. Select someone who can handle the task, and discuss it in depth. “The appointment is only as good as the conversation,” Schwarz says. “What you want is someone who will assume the significant responsibility and decide as you would want, rather than as the daughter who doesn’t want her mom to die.”
Next, ensure your documents will be accessible when they’re needed. Despite technological advances, you can’t assume your paperwork will be recorded electronically with your medical records or shared with your doctors. Methods for storing directives vary by state and by hospital system. In many cases, you’ll need to physically present your paperwork. Keep a copy in your wallet or car, or download it on your phone.
You can store your directive electronically at the U.S. Living Will Registry or DocuBank and allow health care providers to access it. Or create and store an advance care plan using MyDirectives, a free online service. You can use it to notify your health care agent, and he or she can accept or decline the responsibility. You can also share a link to your plan with caregivers and relatives. Von Asten decided to use MyDirectives because she could better organize her documents and keep them in one place.
To be sure your wishes are honored, you or your health proxy also will need to be proactive, double-checking with surgeons, nurses and paramedics to be sure they have your directive or other documents in hand through every phase of your treatment. In one instance, a daughter discovered that her father’s advance directive failed to accompany him when he was moved to a different hospital floor, says Malley.
Update your directive regularly, and give a copy to all those who had the prior version. And follow the updating advice of Charles Sabatino, an elder law expert with the American Bar Association, by using the “five Ds”: a new decade of life, death of a family member, divorce, new diagnosis or a medical decline.
[J]ohn “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.
Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.
Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.
“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”
Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.
For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.
Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.
A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.
The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.
For decades their health was good and the couple relished visits from family and hosting barbecues with friends.
Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.
The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.
Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.
That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.
Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.
Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.
Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.
“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.
New movement to die at home
While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.
The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.
Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.
Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.
Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”
The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.
“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.
“People are awakening to the fact that there is a way to have a good death.”
About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.
Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.
“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”
A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.
“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.
In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.
End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.
Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”
Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.
“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.
Hatala also conducts online training classes for people throughout Wisconsin.
The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.
They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.
The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.
“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.
A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.
Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.
A way to a ‘good death’
For Zito, the care Jeansonne gave his wife made her “almost family.”
Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.
“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.
Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.
“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”
When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.
“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.
Learn more about the end-of-life doula program
To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com
[I]nside a medical care facility in central Phoenix there’s a small chapel with frosted glass windows.
On the wall there’s more than a dozen framed photos of smiling faces. These are the people who have passed on here; many were in the final stages of their life.
James Martz was diagnosed with lung cancer in 2017 and hit rock bottom before getting help at Circle the City.
“They all brought their gifts to this world and they ended up in a place where they had no one,” said Lin Sue Cooney, Hospice of the Valley Community Engagement director. “It’s our collective responsibility as a community to make sure that they have dignity and comfort at the end of life.”
The medical care center Circle the City has 50 beds to care for the homeless, and several are reserved for hospice patients. Medicaid can pay for end-of life-care and even those who can’t pay anything are still treated.
The state’s largest emergency shelter, Central Arizona Shelter Services, known as CASS, saw 423 clients over age 62 last year.
CEO Lisa Glow said the oldest, 89, came into the shelter pushing a walker. Her son was taking her pension and she was homeless.
“There’s vulnerability to fraud, vulnerability to disease, vulnerability to abuse and being taken advantage of,” Glow said. She said there aren’t enough resources at CASS or in the Valley to handle the predicted influx of older people who will end up on the streets and in poor health.
“Being an emergency shelter, people have to take care of their basic daily living needs,” Glow said.
Jesus Tovar, 67, was discharged from the hospital to Circle the City.
“Me sufre mucho en la calle, mucho frío, llueve, a veces no tienes que comer.” Tovar said he suffered a lot in the streets; it was cold, it rained and sometimes he didn’t have anything to eat. Tovar is diabetic and has problems with his lungs and heart.
His voice became thick with emotion when he talked about life on the street.
“Aquí tienes cama. Te dan tus medicinas.” Here there’s a bed, they give you your medicine. It’s like another family, Tovar said. “Aquí tiene como otro familia.”
Tovar is also working toward connecting with his own family through a social worker at the center.
Jesus Tovar said he became disconnected with his family when he lived on the streets. He hopes to mend their relationship with the help of a social worker at Circle the City.
“With that aging comes an inherent need for better end of life care and we have to be able to rise to that challenge,” said Brandon Clark, Circle the City CEO.
“When people come here on hospice they frequently have no one,” Clark said. “It’s rare they have no one when they leave this world.”
‘Pride almost killed me’
Almost everything James Martz is wearing from his UnderArmor sweatshirt to his tennis shoes is new, at least to him.
A chunky silver ring on his right hand is one of the only material possessions Martz still has from his “old life.” It represented his time as a member of the North American Hunting Club.
“Pride almost killed me.” Martz said it’s what kept him from asking for help earlier.
Martz can list the events that lead to rock bottom — drug use, an eviction, a pneumonia diagnosis that revealed lung cancer, chemotherapy.
“It would make me throw up, the other thing,” Martz said grimacing. “You didn’t want to eat. You wanted to sleep all the time.”
In September, Martz said his oncologist gave him six to nine months to live.
Around that time he was sleeping in his broken down 1993 Oldsmobile Cutlass in a strip mall parking lot in Mesa. Eventually police kicked him out after the center’s owner complained.
“I just grabbed my meds and anything essential and just walked off the property,” Martz said. He walked until the skin on his feet bubbled into blisters. A hospital covered the wounds with salve and discharged him.
“I got out of the hospital and I tried to get out of the wheelchair they wheeled me in and I couldn’t even stand up,” Martz said. Then he remembered he had a number for Hospice of the Valley.
“He was very sick, sad, uncertain of the future, some anxiety and I think he just didn’t know what was going to happen,” said Kim Despres, a program director at Circle the City where Martz ended up.
Homeless people can recover there when they’re not sick enough to stay in a hospital, but not well enough to be on the streets.
It’s also one of the only places that provides end-of-life care for people who have nowhere else to go. James Martz had decided he was done with chemotherapy and entered hospice there.
Hospice of the Valley took care of 18,500 patients and family members last year. It’s just one of dozens of hospice organizations in the Valley.
Death with dignity advocate Bruce Wilson, facing his end, wants you to know he’s grateful
Pulmonologist Glenn Ragalie (right) says goodbye to former colleague and cardiologist turned hospice physician Bruce Wilson (foreground) after visiting Tuesday, January 16, 2018 at Froedtert Hospital in Wauwatosa, Wis. Wilson has end stage pancreatic cancer.
[N]ot long after he wrote that, Bruce became a hospice care physician. He has dedicated himself to nudging, sometimes dragging, his medical colleagues in particular and the public in general to stop, take a deep breath and talk about how we would like to handle our inevitable demise.
Last February, Bruce was diagnosed with pancreatic cancer.
In the months that followed, the disease proved to be indifferent to chemotherapy and beyond surgical intervention.
Bruce, 66, is home with Barb, his wife of almost 34 years. If all goes as hoped, that is where he will die.
“People say to me, ‘This must be so surreal,’” he said during a recent week of in-patient treatment at Froedtert Hospital.
(Bruce is not opposed to end-of-life medical intervention. Doctors, he says, have a very important part to play in improving the quality of their patients’ final days. What he is opposed to are ill-informed medical decisions based on fear and desperation that too often merely extend a dying person’s misery.)
“And you know, it is sort of odd. I’m sitting in the front row watching myself. It’s afforded me the opportunity to be right square in the middle of it and say, ‘OK. How am I going to react to this reality?’ ”
Bruce, in these final days, has plenty to say about death and dying, but here’s the main thing he wants people to know:
“I am so grateful.”
He’s grateful that he has had time to love, to admire, to grieve, to celebrate, to forgive and to be forgiven by the people he cares about most.
“You can’t have that when you have the symptoms of a very aggressive cancer, and you are being eaten alive from the inside and you’re in horrible pain all the time and you develop delirium.
“That opportunity is lost.”
To make the most of the opportunity you are given, Bruce said, you need to prepare.
An advance directive needs to be in place so that your doctors and family don’t have to guess at what you wish will happen as you die.
“So you can mourn together, share the loss together, but also be grateful together for your presence in each other’s life.”
Barb, who was sitting near Bruce’s hospital bed, said, “The thing you need to understand to really see what this gratitude thing does is — there is a kind of ripple effect.”
Sharing gratitude, Barb said, “is such a gift.”
“I don’t have to mourn that he was so miserable, he was so afraid, he didn’t get what he needed, he was so unhappy, he was suffering or in pain.”
It’s the difference between grief and regret.
But here is the hard part, Barb said. Here is what you must do before the time comes, as surely it will, that you can no longer deny that you will die.
You have to live.
“You die how you live,” Barb said.
“And if you have purpose and gratitude and all those things, then that is how you are going to die.”
[R]esearchers at Stanford University are using A.I. technology to improve the quality of end-of-life care for patients who may have been diagnosed as terminally ill and have been given a prognosis of having only a certain period of time to live. Essentially, the research is using deep learning to more accurately predict when a person with a terminally ill disease is going to die. As the research states, physicians can over estimate the amount of time a patient may have, which can lead to issues with the end-of-life care and the wishes of the patient. More than just using deep learning technology the researchers are also gathering information from Electronic Health Record data to help narrow down a more precise time frame for death to give a better prognosis.
The reason for this research is tied to information showing that 80 percent of patients in the U.S. who have been given a prognosis of dying soon would want to spend the time they have left at home, which would require palliative care. The research study also points out that only around 20 percent of those who wish to receive palliative care actually get it, and that a big part of that can be due to physicians overlooking certain details that could lead to allowing such care within the home as opposed to the hospital.
The research was said to be conducted with the gathered data coming from two million patient records and that using that data has allowed the researchers to create a model that is about 90 percent accurate in predicting when a patient is going to die. Reaching a mortality prediction apparently starts by ignoring the disease type, the stage of the disease, and the severity of the admission, which the deep learning model then analyzes to ultimately come to the prediction. According to the researchers at Stanford who were part of this project, some pretty powerful computing hardware was needed as the model tests were run using a computer that was outfitted with an NVIDIA TitanX GPU along with 12GB of RAM and CUDA version 8.0. While there is still more work to be done in likely getting to the accuracy rate that the researchers are hoping to achieve, this seems to be a good start in perhaps making it possible for more end-of-life patients to receive palliative care.
It seems so obvious that no one should die alone that we never talk about it, but people do often die when they are alone. Sometimes they die in a way that suggests they prefer to be alone as they are coming to the end of their lives. So is it really such a bad thing to be alone when you die?
When a person is dying in a hospital or a care home it is common for the nurses caring for them to summon their family. Many people will have the experience of trying to keep vigil beside a family member. It is hard – as everyday life goes on regardless – and it can be emotionally exhausting. Sometimes, the relative will die when their family have gone to make a phone call or get a cup of tea, leaving the family feeling distressed and guilty for not being there when they died.
There is plenty of research literature, from many countries, devoted to trying to decide what makes a good death. There are differences to be found between countries, but similarities too. One similarity is a belief that no one should die alone.
Rod Taylor was said to have had a good death.
This idea sits well with the view of dying that can be found in many different places. When interviewed as research participants, health professionals – and nurses in particular – commonly say that no one should die alone. There are also many cultural references that suggest that to die alone is a bad thing. Consider, for example, the death of Ebenezer Scrooge in Dickens’s A Christmas Carol, or the death of Nemo, the law writer in Bleak House. These are both sad, dark, lonely deaths of a kind to be avoided.
Celebrity deaths, such as those of comedian and actress Victoria Wood or David Bowie, are described in the news as peaceful or good when they are surrounded by family. Ordinary people who die alone make the news when the person’s body is undiscovered for a long time. When this happens the death is likely to be described in negative terms, such as shocking, lonely, tragic or as a sad indictment of society.
Some people prefer to be alone
Of course, it may be the case that many people would prefer to have their family around them when they are dying. But there is evidence that suggests that some people would prefer to be alone as they are coming to the end of their lives.
My own research found that while hospice-at-home nurses believe that no one should die alone, they had seen cases where a person died after their family members had left the bedside. The nurses believed that some people just want to be on their own when they are dying. They also thought that people may have a measure of control over when they die, and choose to do so when their family are not around.
In the same study, I also talked to older people who were living alone to find out their views about dying alone. I was intrigued to learn that dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred. For some people in this group, dying was not the worst thing that could happen – being trapped in a care home was considered to be far worse than dying alone.
Cultural representations of dying suggest that being alone while dying is a dreadful thing. This view is supported by healthcare policy and the practices of health professionals, such as nurses. But we all know people who prefer to be left alone when they are ill. Is it so surprising then that some might wish to be alone when they are dying?
It is time we began to talk about this and to accept that we want different things in our dying as we do in our living. Openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death.
