A hospice nurse has revealed what most people say before they die as she spoke out about how we end our lives.
Julie, a registered nurse from Los Angeles, California, has worked in a hospice for around five years.
The nurse has been using her expertise and knowledge to educate her 372,400 TikTok followers about death.
And her heart-warming comments as well as her love for her job have led to her videos going viral with people desperate to know about what to expect when they pass away.
She said: “I love educating patients and families about what to expect with hospices and what to expect with the specific disease they are dying from.
“I also really like giving the patient and family some comfort knowing we will be there to manage their symptoms.
“I have worked as a hospice nurse for about five years and before that, I was an ICU nurse for nine years so I’ve been doing this type of work for 14 years.”
Julie, who shares an insight into her job and answers burning questions everyone wants to know about hospices on her TikTok channel, said her aim is to educate others.
She recently posted a video about the normal things that happen to most people at the end of life — that look abnormal, but are actually really normal.
Julie explained that changes in breathing, changes in skin color, terminal secretions and fevers, just to name a few, are all normal stages.
She said: “The best part about my job is educating patients and families about death and dying as well as supporting them emotionally and physically.
“Also, helping them to understand what to expect is another part of my job as a hospice nurse.
“There is something most people say before they die and it’s usually ‘I love you’ or they call out to their mom or dad — who have usually already died.”
Julie said it’s difficult to explain what happens when people die — generally — as everyone is different.
But at the end of life, if someone is dying naturally in hospice care, most people show the same signs and symptoms.
This is called the actively dying phase.
Julie explained: “The symptoms of the actively dying phase include changes in consciousness (unconscious), changes in breathing, mottling and terminal secretions.”
“These are normal and NOT painful or uncomfortable.”
“Our bodies take care of ourselves at the end of life — the less we intervene, the better.”
There are also some common assumptions that people make about hospices but Julie explained that they’re not true.
She said it’s “not true” that everyone in hospices dies right away and it’s also not true that morphine makes people die faster.
Julie added: “There are some assumptions that people make. Another one that’s completely not true is that hospices kill people.”
Six months ago, Julie decided to share her knowledge of death and dying on social media — and said she couldn’t believe how quickly she went viral.
And the response has been incredible — she regularly shares informative videos answering people’s burning questions about death, dying and the happenings of hospices.
She said: “I knew I had a lot of interesting information about death and dying that most people don’t know about. I want to normalize death by educating people about it. I went home to visit my family, and my tween nieces were on TikTok making dance videos.”
“I later went on TikTok to see their dances. This gave me the idea of starting my own TikTok about death and dying, four days later I did it and it took off.”
“I’ve been doing it for six months now and have over 340,000 followers — it’s crazy!”
Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.
Cheryl Harms Hauser with her husband, David McNally, at their home in Hopkins.
By Kevyn Burger
Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.
Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.
Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.
Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.
“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”
In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.
“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.
“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”
Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.
They also need family support.
“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”
For Hauser, that partner is her husband, David McNally.
Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.
“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”
Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.
“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”
But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.
“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”
A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.
Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.
“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”
Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.
“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”
A good death
Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.
“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”
Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.
“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”
Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.
“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”
To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.
“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”
Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.
“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”
A little known option
Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.
By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.
“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”
Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.
“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”
Leading the ship
Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”
The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”
In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.
Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.
“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.
Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.
“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”
Finding joy
For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).
In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.
She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.
“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”
Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.
“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”
A friend of a friend chose to die via VSED (voluntarily stopping eating and drinking) recently. I guess there is an acronym for everything these days. But I had never before heard of this one. There are, apparently, many books, videos, and podcasts describing this method of choosing to die. As a hospice person for decades, of course I have known of people choosing to die this way. It does happen from time to time. I did not realize that this very personal choice had both a formal name and a movement to support it.
We live in a state with a death-with-dignity option. However, the processes and the hoops a dying person must jump through in order to fulfill that wish are so very complicated that, in my experience, most folks die before all the red tape has been completed. That law allows a person to self-administer a lethal drug. However, to obtain the required drug, a person must be seen to be mentally qualified and within the last six months of life. That effectively excludes a person with progressing dementia. By the time you have only six months to live your mental capacity will likely be severely compromised.
VSED, on the other hand, is entirely within the control of the individual if they decide on that route. A caveat: they must have a caretaker willing to assist them and that person is agreeing to a very challenging role.
Is VSED the same as suicide? Those who champion it say it is elective death (at a time of their own choice) since most of these people know already that they are dying of some illness that over time will rob them of any dignity. If you have witnessed a parent declining into dementia and you, too, have been diagnosed with the same disease, VSED might look like a possible option. Degenerative diseases like multiple sclerosis or ALS conceivably might make VSED look attractive.
What is the process like? It appears that there are lots of moving parts to consider before the person actually ceases to eat and drink. First and foremost, good medical supervision is imperative. If your local hospice and/or palliative care physician will assume that role, that would be ideal. Those professionals are specially trained to provide medical aid and support to the dying and they know their stuff when it comes to keeping someone comfortable. The partner/caretaker is probably the cook, nurse, driver, case manager, liaison with doctors, and full-time support person for the patient who is dying. They, too, must get their own needs met and be taken care of. So, likely, paid caregivers who understand the process must be interviewed and hired.
There is no one way that all this occurs. In general, the person who wishes to die makes the decision to stop eating, and most critically, drinking, and sets a date to start. We can go quite a while without food. But liquid is a whole other story. There are people who regularly do intermittent fasting as a way to diet. There is a real “high” that humans experience after fasting for a length of time, which is the result of our bodies going into ketosis.
After a few days, hunger is not such a big issue, but the need for liquid is. The caregivers have a humidifier running in the patient’s room, swab their mouth with damp swab sticks, put drops in their eyes, and later squirt a fine mist into the mouth. The doctor prescribes low dose morphine and/or a fentanyl patch to keep the person calm and comfortable. As the days go by someone needs to turn the patient regularly to avoid bed sores. Bed baths and peri-wash, changing of clothes and bed linens are a daily regimen. Eventually, the patient slips into a coma. Consciousness is gone but the body ticks on longer until it can no more.
The caretaker has to watch all this, and it cannot be easy. You would have to love someone an awful lot to endure it.
Death rattle. That’s the sound some dying people make, caused by a buildup of mucus and other secretions in the throat as the body begins to slowly lose its life force. It can sound wet and crackling, or like a soft moan or snoring or gargling.
No one knows if a dying person finds the death rattle disturbing or distressing, as no one can pretend to know with certainty the inner subjective experience of anyone too ill to express it. The common medical assumption, though, is that they are not distressed by it. But the death rattle is disturbing to family members and loved ones who are with their loved ones as they are dying. They typically interpret the sounds as indicative of pain and the absence of a “good death.”
A team of researchers in the Netherlands conducted what they call the SILENCE clinical trial to see if an injection of scopolamine butylbromide, an antispasmodic drug, could stop, or at least reduce, the death rattle. It did.
In an accompanying editorial, two U.S. physicians make the case that administering a drug to reduce the death rattle is justified, even when one cannot know the inner experience of a dying patient. They claim that “when in doubt regarding comfort, it is best to try treatment.” They also write that it can relieve the distress not of the patient but of those bearing witness to the death.
The first reason reveals a technological imperative that is permeating health care delivery. The technological imperative says, “If it’s possible, it should be done.” While moral philosophers since Immanuel Kant have held that “ought implies can” — meaning that having a moral duty entails that one is able to fulfill it — the premise doesn’t work both ways. Shooting first (in this case a subcutaneous injection of scopolamine butylbromide) and asking questions later is not the best approach. Of course, it may become best practice to reduce the death rattle, but the medical profession should at least consider why before deeming it so.
The second reason — to alleviate the discomfort of those bearing witness — speaks to the current debate over the legality and morality of capital punishment, especially now when the Biden administration wants to reinstate the death penalty for Boston Marathon bomber Dzhokhar Tsarnaev, even though earlier this year the U.S. attorney general ordered a moratorium on federal executions.
Death by execution and death in the setting of end-of-life care have something in common. Both involve the presence and witness of interested parties. And what is witnessed — rather than what is occurring to the dying individual — matters a great deal.
The law stipulates that punishment cannot be cruel and unusual. The experience of execution also confronts society’s aversion to see itself as inhumane. But the absence of cruelty does not create humaneness. Punishment must not be tortuous or deliberately degrading and should not exceed the severity of the crime committed.
The Biden administration may see execution fitting for the crime of the Boston Marathon bombing. That decision will rest with the court. Whether or not execution on its face is inhumane, it is certainly extreme and should be used judiciously — not politically.
The idea that execution may be a form of torture is one of the primary reasons for its medicalization. The American Society of Anesthesiologists strongly discourages anesthesiologists from participating in executions, and says that legal execution “should not necessitate participation by an anesthesiologist or any other physician.”
Execution wrongly impersonates a medical act and the impersonation is so convincing that even doctors and the public are fooled. In the United States, no method of execution has ever been set aside as unconstitutional, though methods of execution have come and gone — think hanging, firing squad, and electric chair (though this last one may be coming back) — based on public perception of the outward appearance of death by execution.
Administering paralytics and other drugs may make lethal injection look more humane, even peaceful. Yet autopsies performed on individuals executed by lethal injection have shown that they suffered from pulmonary edema — their lungs were drenched with body fluids. In a self-aware person, such lung congestion would be akin to death by drowning.
Society’s opinion about what it finds to be cruel continues to evolve. But it should primarily take into account the sufferer, not those who are watching.
At the bedside of someone who is dying, families and friends are increasingly welcomed to be present, to accompany a loved one in their last moments. This is a good thing, as it returns death and dying to the realm of the home and community so people do not have to die alone. It also helps drive home that death is part of life and not something to hide away or ignore.
The danger that the SILENCE trial presents is the risk that hospitals will curate the dying experience for the sake of loved ones, just as lethal injection curates a medicalized execution for the sake of the witnesses.
If the death rattle is not painful, instead of muting it — and instead of simply paralyzing the executed — it may be better to recognize the bright line that separates the living from the dead. Mollification of observers’ experiences in both instances may anesthetize feelings regarding natural death or killing. It may also lower the bar for what constitutes facilitating death or moral killing.
As a society, we must be sure to uphold our collective humanity and alleviate suffering. But we should be focused on the suffering of the dying and not those who are watching.
In a TikTok video on August 25th, Kassidy Pierson, who had been using the platform to document her life with terminal cancer, told followers she was hopeful it would be a good day. She spent the previous one nauseous, sweating and lethargic. But she was better on this day, and remarked how lovely the weather felt, and how she wished others could feel it, too. She told her followers she wouldn’t be posting every day. That wasn’t realistic anymore, she said.
The video was Pierson’s last. On September 9th, Pierson’s older sister Kasey Metzger posted from her account telling her more than 200,000 followers that the 27-year-old had died.
“I can’t tell you the amount of times that she would just break down crying because she couldn’t believe how many people just loved her from this platform,” Metzger said. “Thank you so much for all that you’ve done for her.”
Pierson, who was diagnosed with melanoma six years ago, used her popularity to raise awareness about skin cancer, but her earnestness, quirkiness and vulnerability made her account more than advocacy. Pierson, whose username was @ohhkayypee, offered a window into what it looks like to die – the grief and regret, the insistence that life isn’t over until it is.
She posted intimate videos – of the tumors protruding from her small frame, on her decision to enter hospice, on how she talked to her son Hunter, 8, about the inevitability ahead. In the process, she developed a captive community that watched with curiosity and awe as she lived the final days of her life.
“We need to know our life matters and we want our life, our death and our grief witnessed,” said David Kessler, grief expert and author of “Finding Meaning: The Sixth Stage of Grief.” “Our worst fear is dying alone. We always wanted someone at our bedside – to know someone will be there. … What’s new is the Internet.”
People want to be seen – in life and in death. The short-form video app TikTok offers users an unexpectedly intimate space to navigate and narrate experiences with terminal illness, which grief experts say offers myriad benefits to people on both sides of the screen. The hashtag #terminalillness has nearly 40 million views on the app.
The person posting acquires social connection, which science shows may allow them to live longer. And the audience is encouraged to confront existential fears, to develop empathy, and even to reflect on how best to live – in the face of imminent death and especially absent it.
‘We don’t really address death very directly’
People grapple with death’s unknowns in a number of ways, made all the more difficult by Western cultures that sanitize death or hide it, said Pamela Rutledge, an expert on the psychological and social impact of media and technology. The invisibility of death exacerbates fear.
A century ago, Kessler said, death was visible. Grandchildren watched their grandparents die at home. When he was a boy, Kessler remembers being on his way to school and seeing hearses on the street.
“Now the dead move around our cities in white unmarked vans,” he said. “If you want to see death now, you’ve got to see it in a movie or online or on a TV show.”
Like Pierson, many TikTok accounts are offering a raw look at dying, the way its nearness clarifies the preciousness of life. Many encourage followers to take care of their health. Some accounts are intimate, others more humorous.
User @solelenaq& ;shared her perspective on appreciating each day: “If I don’t make it I just want to say, ‘live your life.'” User @kora_the_herbivora shared a video of how overwhelmed she became by something that before her cancer diagnosis may have gone unmarked – the sensation of warm sun on her skin. User @pheovsfabulous posted a video about how she spent her life’s savings when she was given a year to live, only to outlive the prognosis.
Pierson’s mother, TK Dunn, said she’s glad her daughter uncloaked her own experience with death, especially how ambigious it can be. Pierson never really knew how much time she had left.
“There was this roller coaster of, ‘Am I going to die now? What does that mean? Who do I turn to?'” Dunn said. “Our culture doesn’t normalize conversations about death. Death happens. We act like it doesn’t. If we can start demystifying it, maybe these events wouldn’t be so jarring or traumatic.”
‘One of the biggest ways people matter is through personal connection’
The Internet may be making death visible again, but it also offers something to the dying – the ability to connect. To matter widely.
“One of the biggest ways people matter is through personal connection,” Rutledge said.
“The ability to connect with people – to have that level of feedback and that level of support can be very positive emotionally,” Rutledge said.
The desire for connection goes both ways. Pierson’s audience was likely captivated because they craved connection, too, Rutledge said. And Pierson gave them that – often telling followers how grateful she was for their support, how much they meant to her.
“If the person who’s going through this, the person who’s dying, is thanking you for your attention and your participation in their journey, then you’re establishing … a parasocial connection in the sense that these people don’t know each other but become emotionally invested, just like you would with any narrative.”
These narratives also offer people fearful of death an alternative to the most terrifying story they tell themselves about how they would cope. Everyone makes up stories, consciously or not, about what they might do when death is close.
“You wonder how you would deal with your erasure,” Rutledge said.
‘It psychologically feels like it prepares us’
Kessler said he believes every fear we have connects back to a fear of death. But that fear isn’t productive. Fear doesn’t stop death, he said. It stops life.
Accounts documenting terminal illness allow people to confront their fears. To go to the edge in a safe, observing way.
“It psychologically feels like it prepares us, or it lets us know when our worst fear happens, we might be OK, too,” he said.
In the final weeks of Pierson’s life, she had family time, wrote in journals to her son, did a ride-along with the police department and sat in a private jet. She reminded her followers not to “be stupid” and to get their skin checked. She cheered on thwho heeded her advice.
“I would like to take you guys as far as I can on this journey with me. I’d like you guys to all see it and experience it and learn,” she said in a video on August 11th. “You’re not alone. … We’re doing this together.”
End-stage heart failure is the most advanced stage of congestive heart failure. At this point, treatments don’t offer too much symptom relief.
There are four stages of heart failure. The first two stages—A and B—are considered pre-heart failure, where lifestyle changes and medications can largely keep the condition at bay. By stage C, you may have symptoms like swollen limbs, fatigue, and shortness of breath with physical activity.
By stage D, the heart has experienced significant damage, and it has begun to affect how other organs work, like the kidneys. Treatment for this stage includes surgery, heart transplant, or ventricular assist devices. You may also pursue hospice care—treatment based on comfort alone.
Signs
Congestive heart failure is usually thought to be a condition of the heart, but it can affect other organs as it progresses. It continues to get worse with each flare-up, or exacerbation, and 90% of people with the condition eventually die of pump failure.1 This is when the heart can no longer function as a pump, and circulation of blood and oxygen through the body stops.
Symptoms of end-stage heart failure stem from this deterioration of the heart’s pumping power. As the heart grows weaker, it can’t pump enough blood to other parts of the body, and blood and fluids begin to back up.
Tissues and organs that don’t receive enough blood, oxygen, and nutrients fail to work effectively. The symptoms of end-stage heart failure are caused by the body’s attempt to compensate for a weakened heart.
Symptoms of end-stage heart failure are similar to those in stage C, only they are more severe. They may include:2
Swelling and fluid collection under the skin
Shortness of breath, even at rest
Pulmonary edema, where excess fluid fills the lungs’ air sacs
Weakness and fatigue, especially with physical activities
Low blood pressure
Malnutrition, or failure of your body to absorb nutrients
Sudden weight gain
Increased nighttime urination
Coping
As your end-stage heart failure progresses, it will become more difficult to perform routine daily activities like bathing or walking through your house. You may require home care, a move to a skilled nursing facility, or frequent or continued hospitalization.
At advanced stages, you may need to be hospitalized for intravenous medications, oxygen therapy, or other treatments. If you don’t improve with hospitalization or need skilled nursing care, your medical team may recommend hospice or palliative care:
Palliative care: Contrary to what many people believe, palliative care is not necessarily end-of-life care. Palliative care focuses on relieving symptoms and discomfort caused by a chronic illness. Treatments continue with palliative care in many cases, but there is a greater focus on improving the quality of life. In people with heart failure, a palliative care visit during a hospital stay for heart failure was linked to decreased future hospital stays and intensive care unit admissions, and fewer aggressive treatments.3
Hospice care: Hospice care also focuses on comfort and quality of life, but you also make the decision with hospice care to forgo additional invasive or lifesaving measures.
Prognosis
Only about half of the people who have heart failure that’s in stage C or beyond live for five years after their diagnosis.3 More than a third of people with advanced heart failure die within a year of being hospitalized.
People who receive heart transplants or a ventricular assist device, which can help the heart pump out blood as it grows weaker, have a better outlook. While life expectancy on a ventricular assist device is limited, people can often expect to live 10 years or more after a successful cardiac transplant procedure.1
The American Heart Association (AHA) supports frequent conversations between you and your medical team in end-stage heart failure. Shared decision making is a partnership between you and your doctor where you openly and regularly discuss your condition, treatment options, and prognosis.
To help with the shared decision-making process, AHA offers the following checklist:4
Annual review of your condition and progress, current treatment goals, and plans to address emergencies and worsening of your condition
Review of treatment goals after “milestone” acute events like a hospitalization, heart attack, or need for defibrillator shock
Open and honest conversations about the side effects and quality of life impact that different treatments or worsening of symptoms may cause
Discussions about the impact of your condition and treatment options on you and your caregivers or family
Palliative care alongside medical treatment to help manage symptoms
Hospice care or other end-of-life planning to make sure your wishes are met when your condition advances
What Does Moving to Hospice Care Involve?
If you and your family have made the decision to pursue hospice care while receiving inpatient care, a case manager or social worker can help facilitate the process. If you are at home and would like to transition to hospice care, hospice agencies can help make the arrangements. Hospice agencies will review your needs and have a doctor order the appropriate medications for you. These medications will focus not on treating your condition, but on managing your symptoms and comfort as much as possible.
Caregiver Support
Supporting and caring for family and friends with end-stage heart failure can be difficult. At advanced heart failure stages, a person with this condition will need help with their daily activities.
Coping with the demands of caregiving can be difficult. If you are a caregiver, enlist the help of others, and involve your own healthcare providers in creating a plan that keeps your health and well-being in mind. There are services that can offer respite care, or temporary medical care for the people you care for when you need a break.
Palliative and hospice care can help caregivers cope as their loved one’s condition deteriorates, and they can find ways to make them comfortable as much as possible. The American Heart Association also recommends that caregivers find support groups in their community or online.5
Frequently Asked Questions
What is end-stage heart failure?
End-stage heart failure is the most advanced stage of heart failure. At this stage, medications and treatments can no longer improve the symptoms or prognosis. The focus of treatment at this stage will be to manage your symptoms as best as you can and prioritize comfort.
What are the signs of end-stage heart failure?
In end-stage heart failure, you may experience severe shortness of breath, swelling, and fatigue. It may become difficult to live independently and meet your own daily needs.
What should I expect at end-stage heart failure?
In end-stage heart failure, you may need frequent hospitalizations, and each acute event may make your condition worse. Your healthcare team may suggest skilled nursing, palliative, or hospice care to help you manage your condition.
How long can you live with end-stage heart failure?
Heart failure is a chronic, progressive condition that worsens with each flare-up. Your outlook and prognosis are better if you are healthy overall, you have been following your treatment plan, and you are responding well to your treatments. Being willing to pursue invasive treatments like a heart transplant will also increase your life expectancy.
Summary
End-stage heart failure is the most advanced form of heart failure, where your heart cannot pump blood effectively to meet your body’s needs. Treatments that have helped you manage earlier stages of the disease may not work anymore, and your healthcare provider will prioritize alleviating the discomfort of your symptoms. It’s still important to stay healthy because that could potentially improve your prognosis. Continue reading “What to Expect With End-Stage Heart Failure”
Dying is unpredictable. It is not always possible to know for sure that a person is in the last days of life, predict exactly when a person will die, or know exactly what changes the person you are caring for will experience when they are dying.
However, there are certain bodily changes that show a person is likely to be close to death. It is normal for these signs to come and go over a period of days, and if they do go, this does not usually mean that the person is recovering.
Some of these changes may be distressing, but it can be reassuring to know what to expect and how to help. Signs that a person may be dying can include:
