Although you might feel like you’re going to die if that bartender doesn’t get you a beer right now, this isn’t exactly a dire situation. What is, however, is if you’re faced with a real life or death scenario. In these cases, most people panic, and not hyperbolically.
That’s why we spoke to seasoned ER guru Dr. Ryan Stanton (and spokesperson for the American College of Emergency Physicians), who faces life or death situations every single day he goes to work. He’ll teach you how to keep cool if you ever find yourself in such a predicament.
Prepare for any situation
You can’t possibly prepare yourself for all circumstances, since we’d all be pretty screwed if some Leftovers-type stuff went down, but first aid training goes a long, long way. Hit up your local fire department, American Red Cross, or hospital for a basic first aid class, which will help you help others when it matters most. You’ll learn how to give non-creepy, hands-only, live-saving CPR that doesn’t require you to basically tongue kiss a stranger, plus super useful skills like what to do when someone’s choking, and how to stop major bleeding. And you can also learn how to shock someone’s heart using an AED machine if they go into cardiac arrest.
Know you don’t always have to do something
Even if you’re prepared, know your limitations, because sometimes doing very little is the best possible thing. Let’s say you come across a car wreck, and someone is badly injured. As Dr. Stanton explains, just being there is good enough: “Sometimes the best thing you can do is call 911 and talk to the person,” he said. “Give them comfort.” If the person in the crash is already bleeding badly, any stress on top of that will make them “more likely to have complications.”
And to further hammer home the point that real life is not like being in a hospital drama on TV, you don’t have to be a hero and save everyone. So if you see someone having a seizure, outside of “keeping [the person’s] airway open,” (a technique you learn in basic first aid!), your job is to sit there and wait for EMS to arrive. “People feel like they have to do something,” Dr. Stanton said. “They try to shove stuff in the person’s mouth to keep them from breaking teeth, or put their fingers in their mouth to keep them from swallowing their tongue. And then you just end up with two people hurt instead of one.”
Prioritize, prioritize, prioritize
When someone comes into the ER with a problem, Dr. Stanton asks himself the same question: “What’s going to kill them first?” Probably that hospital food, says every comedian from the ’80s. But if that person is not bleeding to death and is breathing fine, then Dr. S has bought himself enough time to figure out what to do next.
By way of example, let’s go back to our imaginary person in a car crash: Dr. S says some newbie doctors can get distracted by the victim’s nasty-looking sideways ankle and not realize that they’re also not breathing. Prioritizing allows you to focus on what’s critically important at the moment. You can only do one thing at a time.
Know that sometimes there are no solutions
Everyone knows they’re supposed to calm down in a stressful situation, but it’s not just about taking a few deep breaths (though you should also do that). “Panic has never fixed a problem,” Dr. Stanton said. “Fixing a problem involves working through what you know — if it’s not part of what you know, find the people who know it.” If someone else can’t help, perhaps there are no solutions whatsoever to the super stressful, life-threatening situation you find yourself in. “[Sometimes] you can’t change the current situation,” he said. “All you can [affect] is what’s going to happen now and moving forward. Stay calm and think about what you can do [next].”
Gain confidence through education, experience
ER doctors stay calm while saving lives everyday, and they’re able to keep cool by relying on a combination of experience and education. Now, outside of being that guy in Catch Me If You Can and impersonating a doctor to gain some life-saving experience, first aid training will suffice.
Dr. Stanton put said experience to work one Sunday outside of the ER, when someone passed out behind him in church. While other people were freaking out, Dr. Stanton followed his own advice and everything turned out fine.
Other, non-passed out churchgoers were concerned that the unconscious person didn’t have a strong pulse, and that it was imperative to check their sugar. But Dr. S knew the best move in this situation — make sure the victim was breathing and stay there until EMS arrived. And to stay calm. In a hospital, “if the doctor is calm and relaxed, the whole [ER] is calm and relaxed and everyone does their job.” Be the calm one in any life-threatening situation you encounter, and you’ll do just fine.
Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.
Before he enters the room, Craig Phillips pauses for a deep exhale.
“Just to let everything go,” he says. “And to remember that I’m here for them.”
Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.
There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”
“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.
“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”
The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.
Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.
Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.
As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.
It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.
A good death
On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.
“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.
The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.
On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”
One woman talked about her daughter’s stillborn baby.
“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”
Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.
“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”
Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.
They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.
“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”
Beautiful souls
Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.
At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.
“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”
A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.
After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.
“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”
Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.
But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.
The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.
And happily so.
“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.
Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.
In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.
With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.
In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.
In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.
The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.
The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.
There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.
If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.
In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)
Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.
Medicare defines four distinct levels of hospice care. This benefit provides goods and services to allow you and your family to stay together in the comfort of your home, unless you need care in an inpatient facility, for the duration of your terminal illness.
The patient is still responsible for the deductible and coinsurance amounts for expenses incurred due to health problems not related to the terminal illness.
Level 1 – Routine Home Care
Routine home care is the basic level of care under the hospice benefit. If a patient resides in a nursing home, it can also be called routine nursing home care, and includes:
Nursing services
Physician participation
Medical social services
Home health aide services
Counseling services (pastoral, spiritual, bereavement, dietary, and others)
Medications
Medical equipment
Medical supplies
Lab and diagnostic studies related to terminal diagnosis
Therapy services
Level 2 – Continuous Home Care
If you have continuous home care, a nurse and/or a home health aide will remain in the patient’s home environment for 8 to 24 hours per day. Continuous care is a short-term level of care reevaluated every 24 hours. Some examples of symptoms requiring continuous care would be:
a breakdown in the primary caregiver support system
Level 3 – General Inpatient Care
Some patients have short-term symptoms so severe they cannot get adequate treatment at home or they may feel more comfortable getting treatment at aninpatient facility.
Symptoms requiring inpatient care are the same as those requiring continuous care (above), only the setting of care may be different.
With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable. There are several types of facilities that offer inpatient hospice services:
A free-standing facility owned and operated by a hospice company.
A hospital may have a unit to provide inpatient hospice care.
Long term care facility may lease a unit in a nursing home to a hospice company.
Level 4 – Respite Care
Respite care services are more for the family than for the patient. If the patient does not meet criteria to qualify them for continuous care or inpatient care but the family is having a difficult time, respite care may be an option.
If a patient’s family is the primary source of care and cannot meet their needs due tocaregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. There is a five-day limit on respite care. Once that period expires, the patient is discharged and returns home.
Determining Level of Care
A facility admits patients to hospice on any level of care necessary at that time. The facility can transfer the patients between levels of care as their needs change. The decision to treat someone at a higher level of care falls to the hospice physician, who documents this information. With four levels of care in place, no patient should ever be left in a crisis situation alone.
Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.
Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.
Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.
Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare datapublished in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.
For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?
What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.
Listen to a few.
Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:
In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.
I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.
About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:
I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.
Dr. Bartholome referred to this period before his death as “a gift.”
It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.
A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Maurer and Letha Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.
Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:
The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.
The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.
Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.
These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.
How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.
Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.
The emotional crumbling started when she was 14 and a friend was killed in a car crash. Three years later, her father died when his helicopter exploded. When she was in her 30s, her brother committed suicide.
By the time a close friend was murdered three years ago, the coping skills Bonnie Ludwig had for dealing with death were shattered — and she found herself one day on her knees on a sidewalk, sobbing obliviously.
Therapy gave healing, which allowed her to help comfort dying dogs at the pet care company she runs — and which soon led to her sitting in a San Francisco hotel room on Friday, learning how to help people die better.
Ludwig, 45, was taking a class in how to become a “death doula,” someone who helps shepherd the dying and their families into loving, peaceful exits. The man who founded the craft in 2003, Henry Fersko-Weiss, is guiding her and 47 other students through a weekend-long course on handling what for many seems like the worst moment possible — but, if handled deftly, can be a beautiful journey to whatever lies just beyond a heartbeat.
‘Learn to let go’
“Humans hold onto life so tightly,” said Ludwig, who flew up from San Diego to take the $600 training at the Omni Hotel. “We need to learn to let go better. We grieve so badly in our culture, and I have found it is sacred and an honor to be with animals when they die. Now I want to be able to do that with people.”
Fersko-Weiss, 68, has trained more than 1,000 people in his discipline, and this was his first session in San Francisco. People come to his trainings for many reasons, he said — some from pain, like Ludwig, some because they’ve already helped others die and feel a calling to do more. But they all have one thing in common.
“I have found that the people who come to these trainings have a great deal of compassion and want to serve people at this incredible period in their lives — death,” said Fersko-Weiss, who lives in the small town of Warwick, N.Y. “They are self-selecting. Like me, they feel this is a way they can really do some good and help. It’s very intense and very important.”
The idea of finding a better way of dealing with the obliteration of life came to Fersko-Weiss when he was a hospice volunteer and saw too many people missing the last breaths, not saying the words they wanted to say before passing, not feeling complete in what they were leaving behind.
Laura Statton attends the training session by the International End of Life Doula Association at the Omni Hotel in San Francisco.
He had a friend who was training at the time as a birth doula — a midwife of sorts, who helps birthing moms and their partners stay comfortable and well-centered — and he found the approach so dynamic he took the course himself.
What he learned there led him to co-found the International End of Life Doula Association. Doula, in ancient Greek, means “woman who serves.”
“It’s just our human nature that we want to be reassured as we die,” Fersko-Weiss said. “We’re going into the unknown, and everybody has fear of passing that boundary between life and death.
“I believe the only thing that counts at the end is having people we love, someone at your bedside, talking to you, telling them how much they love them, reassuring them it’s going to be OK. Those things are important.”
Calming techniques
Students learn techniques for calming the dying and their family and friends, and then they help them find the right kind of intimacy to say the things that need to be said. To cut to the chase about what they want to be remembered for, to compile scrapbooks. To face the end with grace.
Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.
Sometimes doulas ease pain by having the dying visualize soothing times in their lives or by giving therapeutic touch. And they help plan what the final moments will be like. Sometimes people want candles burning, certain clothes, favorite poems read out loud. Doulas stay at the bedside, ready to recognize when death is minutes away — mottled skin, fingernails turning blue, other clues — so everyone can be prepared.
Cynthia Imperatore, who lives in New Jersey and is helping Fersko-Weiss at this weekend’s training, found that sometimes the simplest actions are the most important.
Recently she was helping a son sit vigil with his terminally ill mother, and found herself sitting at the woman’s bedside, holding her hand while the son stood stiffly at the foot of the bed with a TV blaring in the background. The final minutes were near. It didn’t feel right.
“I had him turn off the TV, put on some classical music, and I said, ‘Come here and hold your mother’s hand,’” said Imperatore. “So he came, and then I said, ‘Tell her these things’ — in Spanish, because that’s what his mother spoke. I said, ‘Tell her she’s done everything right. Tell her you’re grateful. Tell her you love her. Tell her what she did mattered.’
“And what happened is that these were the last words she heard,” Imperatore said. “He didn’t have to carry a sense of unfulfillment with him. It was good.
“What we do is not morbid,” she said with a gentle smile. “It’s a privilege to be there when people are dying. Death takes us to a place where we seek meaning, makes you question what is life. And sometimes it can make you appreciate life more.”
A patient at Houston’s Ben Taub Hospital waits on a stretcher in the hallway for space in the emergency room to open up.
Doris Portillo keeps the door to her father’s old room closed to avoid remembering the last few months of his life. It’s a small room, barely large enough for a bed, a small bureau, and a television, all of which are long gone. This is where she, her siblings, and her nephew cared for her father, Aquilino Portillo—feeding him, lifting him out of bed to take him to the bathroom, doing their best to clean the sores that festered beneath his weight.
A naturalized citizen from El Salvador, Portillo brought her parents to the United States in 2001 and sponsored their green cards so that she could take care of them as they aged. In late 2013, when Aquilino was diagnosed with end-stage metastatic prostate cancer, she discovered how difficult taking care of him would be.
Portillo’s insurance through her employer—she works nights cleaning offices for the City of Houston—didn’t cover her father, and the family couldn’t afford to buy insurance for him. They tried to determine if he could qualify for Medicare, the federal health benefit for the aging, or Medicaid, the state-run health insurance for the poor, but were given conflicting responses depending on whom they talked to. Confused by the requirements and limited by her poor English, Portillo applied for Medicaid for her father, but never got a response. So, for the better part of a year, the Portillos carted Aquilino back and forth to the emergency room in a wheelchair, where they would wait for hours, sometimes all night, simply to have his pain medications refilled.
As Aquilino’s condition worsened, he could no longer be moved from his bed to see a doctor. His body was riddled with tumors. His legs became too heavy for him to move, and his pain became unbearable. “It was ugly, ugly and scary, to see a loved one dying,” Portillo says in Spanish. “And if that person is your father, it’s something indescribable.”
By the time Portillo found out about a small county program that sends health workers to the homes of low-income, bedridden patients, her father had been at home without pain medication for two and a half months. The nurse practitioner who came, spurred by Aquilino’s obvious suffering, rushed to order medication to make him more comfortable. Two days later, when the morphine had barely had a chance to soothe him, he was gone.
“Sometimes people die and death is sweeter,” Portillo says. “I don’t think death is ever sweet, but they suffer less. My father suffered so much, he really fought to leave us.”
Portillo is not alone. Some 28 million people in the United States do not have health insurance, and for the dying and their families, lack of insurance is devastating. Though the care needs that arise with terminal illness are simple, they are often prohibitively difficult to meet without insurance. The uninsured and their families are left to navigate public and charity end-of-life care options that vary widely across the country, if they are available at all. There are no data on how or where the uninsured access this care, and the scope of unmet need is virtually unknown. What is known is that, at the end of their lives, many uninsured people quite literally cannot afford to die with dignity.
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For the most part, patients with insurance have a choice when they receive a terminal diagnosis. Some choose to exhaust all possible avenues for fighting their disease, hoping conventional treatments or experimental drugs will prolong their lives. But when treatment fails or its toll is too great, the quality of a person’s final months or weeks often matters more than prolonging them. Doctors tend to steer those patients toward hospice, the holistic form of palliative care that focuses on treating symptoms in order to make a patient more comfortable and functional as they near death.
One of the fundamental tenets of hospice care is that patients and their families will have a better experience of death if the patient dies at home, among loved ones and familiar surroundings. The actual care is fairly simple, and focuses on managing symptoms and making the most of the time the patient has left. Family members administer most of this care, with support from the hospice team (a doctor, nurses, and often a social worker, chaplain, or volunteers), whose oft-repeated motto is to “care for the caregivers.”
Hospice began on the fringes in the 1960s and ’70s, somewhat at odds with the American medical-industrial complex. Hospice for Medicare-enrolled adults can’t begin until curative treatment has been abandoned, something that’s difficult for many patients, their families, and even their doctors to do. But hospice has gained a mainstream foothold over the last few decades, as doctors and patients have increasingly accepted that “life-extending” treatments can make dying more painful, often with little or no benefit to the patient. The vast majority of hospice recipients—about 85.5 percent—access the service through Medicare, and the proportion of Medicare beneficiaries using hospice before they die has more than doubled since 2000. The Centers for Medicaid and Medicare Services recently began reimbursing doctors for time spent explaining the benefits of hospice to their Medicare-funded patients, further encouraging hospice advocates, who see a lack of awareness as the fundamental barrier preventing patients from getting good end-of-life care.
But what about the millions of uninsured poor Americans who simply have no way to pay for that care? While Medicare, Medicaid, and most private insurers cover hospice, millions of Americans—mostly working-pooradults under 65—don’t have access to an insurance program. In most of the 19 states that have not accepted the Affordable Care Act’s Medicaid expansion, for example, qualifying for Medicaid is almost impossible unless you’re a child, pregnant, a parent on welfare, elderly, or disabled (only Wisconsin is finding ways other than the federal expansion to cover its childless adults). In these states, more than 3 million adults fall into what’s called the ACA “coverage gap”: They don’t qualify for Medicaid under the states’ rules, but make too little to qualify for federal subsidies on the government-run insurance marketplaces. To put this in perspective, in order to qualify for those federal subsidies, a household has to make at least 100 percent of the federal poverty level—about $20,000 a year for a family of three.
The country’s 11 million undocumented immigrants face particularly high barriers to accessing health care, including hospice, as they are legally barred from enrolling in any federally funded insurance program. Some 63 percent of the undocumented population goes without insurance coverage, and studies show that they tend to seek health care less in general, partly due to fears that interacting with any authority could lead to deportation.
Today, more than 76 percent of hospice patients are white, and terminally ill patients are less likely to die at home the lower their incomes. In many poor urban communities, less than 5 percent of the dying receive hospice care in the last six months of life.
Public-health systems around the country are trying to address these disparities, and Harris County, where Aquilino Portillo lived, provides a stark example of just how difficult it is for local safety nets to fill this care gap. Texas has the highest rate of uninsured residents in the country, with nearly 1 million uninsured people in Harris County alone—roughly 22 percent of its population. For employed adults under 65, that number is closer to 30 percent. The Houston area has an expansive health-care safety net that serves the poor, including many private hospitals and clinics that provide some care for free. But it’s the county’s taxpayer-funded hospital district, Harris Health, that is ultimately responsible for providing healthcare to those who can’t afford it. Like many public-health systems around the country, it struggles to handle its uninsured population while simultaneously facing perennial budget problems, due in part to the chronic poverty of its patients. Difficult decisions must be made and priorities set; only so much can be done to care for the dying when so many others need treatment.
Harris Health doesn’t offer hospice, but it pieces together something similar through in-hospital consultations, a palliative-care clinic, and the house-calls program that Doris Portillo found too late. Low-income patients can use these services with financial assistance from the county, which used to come in the form of a laminated “Gold Card,” a name that locals still use to refer to the benefit. But applying for this financial assistance takes precious time—Doris Portillo says she spent a month away from her job trying to get her father Gold Card eligibility—and many people eligible for the benefit are not able to use it. While low-income undocumented immigrants in Harris County are entitled to Gold Card assistance, for example, providing proof of residence and income to establish eligibility can be difficult, since they often share housing and work as day laborers for cash. It’s an unspoken truth in Harris County that the hospital district serves those who can pull together the correct documentation to prove their eligibility for financial assistance, those who can endure the system’s chronically long wait times, and those who can essentially coordinate their own care. Like the Portillos, many end up getting end-of-life care the only way they know how—at the emergency room.
Dr. Ricardo Nuila, a hospitalist at Ben Taub, the largest of Harris Health’s three hospitals, describes the county’s emergency rooms as a kind of revolving door for terminally ill poor people. The uninsured tend to find out about serious illnesses like cancer later than the insured, since they use primary health care less frequently and are twice as likely to postpone or go without medical care due to cost than those with insurance. This means that by the time many uninsured patients seek care, their symptoms are acute and require immediate attention in an emergency room. But even those in non-emergency condition simply see no alternative to the ER—federal law requires emergency providers to stabilize a patient’s symptoms regardless of his ability to pay. Once that’s done, the patient is usually sent home; for terminal patients, this cycle only repeats as their condition worsens.
“That’s one of the most concerning things when you’re working in the hospital and you walk through the emergency room,” Nuila says. “The patients might actually have their pain and their suffering well controlled with medications at home, but they’re in the emergency room just to get prescriptions.”
Emergency rooms are brutal places for the dying. Patients and their families can spend entire days waiting to be seen by a doctor. In 2013, a local news channel reported 14-hour wait times at Ben Taub, with as many as 100 people at a time filling the reception area. Terminally ill patients must describe their symptoms again and again as they pass through various levels of triage, often undergoing tests or procedures intended to lay the groundwork for treatment they know is futile. Once admitted to the hospital, they are disturbed every couple of hours by nurses checking vital signs, even if the patient has only hours to live. There are the sounds and smells of other patients, and the comings and goings of a legion of hospital workers. “You’re dying in a semi-public place,” says Nulia. “That can be very difficult for somebody who’s trying to have an environment of respect for their dying one.”
Hospitalists like Nuila try to send terminally ill patients home with as much medication as possible and some sense of how to keep their symptoms at bay. The textbook next step for insured patients, he says, is to suggest hospice so that families can get the proper care at home. But he knows that many of his patients can’t afford it. “In a way, we’ve just sort of come to accept poor outcomes for unfunded patients,” he notes. “We just say, ‘OK, let’s hope that they get hospice services, or charity hospice kicks in.’”
According to the National Hospice and Palliative Care Organization, only around 1 percent of hospice services in the United States are delivered free of charge to families who otherwise have no way to pay for them. Nonprofit hospice centers are often required to provide some charity care, but there are no government guidelines as to who should receive it or how much of it should be available in a given geographical area. One-fifth of all hospices nationwide provide no charity care.
Nuila estimates that Ben Taub is able to connect unfunded patients with charity hospice only about half the time, though Harris Health doesn’t officially keep track of that number. It is rare for charity care to be flat-out unavailable, but for indigent terminally ill patients who often have only days to live, the wait time—commonly four to six weeks—is as good as nothing. When they can’t get a patient into hospice, the already overworked doctors, social workers, and case managers at the hospital do their best to piece together the next-best thing.
Alexie Cintron is one of those doctors. A palliative-care specialist who provides serious-illness consultations for hospitalized patients at Ben Taub, he also runs an outpatient palliative-care clinic for patients who are staying at home. Provided the patient is covered by a Gold Card and can make it to the clinic to see him, Cintron can show family members how to care for their dying loved one and send them home with equipment like a hospital bed or a bedside commode, and they can get prescriptions filled through the system’s own pharmacy at Ben Taub.
“Essentially, I’m kind of a hospice doctor by default,” Cintron says. “We can’t find them hospice, we don’t provide hospice as a system, and so I’m the fallback.” But the help that Cintron provides is a far cry from the comprehensive and consistent care provided by hospice, and he and the nurse practitioner he works with can stretch their time only so far. “Many times we struggle with being able to support the family enough so that we try to keep this patient from bouncing back to the hospital in the next week or so.”
For poor families, the difficulty of providing good care for their loved one often stretches far beyond the health-care system itself. “If they have to take three different buses in order to get to our clinic, they might not be able to make it in time [for an appointment],” Cintron says. Money is often an issue—even with financial assistance from the county, which can lower the cost of filling a prescription to as little as $8, some people are unable to afford their medicines. Then there’s the scarce resource of time. Family members have to take off work or find child care, and they must make time to keep appointments, get prescriptions filled, and apply for financial assistance. This is all before they’ve spent any time actually caring for their dying loved one.
For at least some indigent patients, however, Harris Health does provide something akin to hospice care in the home. Dr. Anita Major is director of the system’s geriatric house-calls program, the one that was able to visit Aquilino Portillo only once before he died. The service began in the 1980s, but has expanded its patient load fourfold since 2010 in an effort to address the need for home care in the community. It’s not hospice, she says—partly because it generally involves less frequent visits, less comprehensive support, and only serves patients who are unable to leave their homes for medical appointments—but it’s pretty close. Like many uninsured people, however, Major’s poorest patients often connect with home care only when their illness has reached a crisis point and the extremity of their symptoms requires hospitalization anyway. “The problem is we meet them and, you know, 10 days later they’ve died,” Major says. “And we really should have met them a year before that.”
But the most vulnerable population, says Major, are those who never cross paths with the system—people who may be eligible for county health services but don’t know it or can’t access them. For every family like the Portillos, who find care too late, there are likely many more who never find it at all. “I think it’s a lot more than I’m aware of,” says Major. “Those are the people that I think really are suffering, and they’re just invisible to us.”
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Nationwide, it is hard to say just how many people who want or need end-of-life palliative care are forced to go without it. One recent nationwide survey assessing the availability of palliative care in general (including for nonterminal patients) showed that, while the prevalence of palliative programs in hospitals is steadily increasing, fewer than half of the country’s rural or isolated hospitals offer the option at all, let alone to unfunded patients. Statistics on hospice itself are generally tracked through utilization by Medicare and Medicaid beneficiaries, and there is no database for how or where the uninsured access the service.
“It’s difficult to measure unmet need,” says Carol Spence, vice president for research and quality at the National Hospice and Palliative Care Organization. She adds that quantifying hospice access is complicated by its elective nature. “There’s not a defined population that should have hospice like there is for a given illness,” she says. “Hospice is a choice.” But it’s a choice many of the dying poor don’t have.
For safety-net providers, expanding access to hospice is not a simple question of funding the service itself. Though outpatient hospice services cost on average 15 times less than treating the dying in a hospital—between $100 and $200 per day for hospice versus close to $3,000 per day in a Texas public hospital—offering hospice through public systems like Harris Health would actually increase the overall cost to those systems. Public hospitals tend to have far more demand for care than they can meet, so a bed vacated by a patient transferring to hospice will immediately be filled, and the hospice patient’s care will amount to a new expenditure. Like many public-health systems around the country, Harris Health is facing a deficit this fiscal year—$8 million—even after cutting overtime for its staff and reducing the number of people who qualify for Gold Card assistance. Because these systems are struggling to fund even their preventive care, adding to their deficits to treat the already dying is simply not an option.
The underlying reality is that local safety nets can only be expected to do so much for America’s uninsured, whose real problem, especially at the end of life, is that they don’t have insurance. According to the National Hospice and Palliative Care Organization, the most efficient way to increase access to hospice for low-income patients is to provide insurance coverage to the nation’s 28 million people who currently don’t have it. “It’s better to insure people ahead of time than to subsidize safety-net care after the fact,” insists Charles Begley, a veteran health-care researcher at the University of Texas School of Public Health. “There are many very valuable, very important, very cost-effective health-care services that this limited, publicly funded health-care system cannot address.”
Not only would insurance allow indigent patients to use the same hospice providers as the more well-off, but the consistent access to primary care that comes with being insured would make them more likely to hear about the service and choose to use it earlier in their illness. At the same time, Begley adds, insurers would have a financial incentive to make hospice a more visible and readily available option throughout the health-care system. Safety-net providers could focus their resources on acute and preventive care, and everyone would be better off.
But the United States is a long way from providing insurance to all. Four of the five states with the highest uninsured rates have decided not to expand their Medicaid programs under the Affordable Care Act, or even to set up their own insurance exchanges. According to the Kaiser Family Foundation, nearly 5 million more people nationwide would qualify for Medicaid—and gain access to hospice coverage—if their states chose to expand. If Texas were to expand its Medicaid program under the ACA, it would bring in nearly $6 billion in new federal funding and insure 2 million low-income adults, nearly 400,000 of them in Harris County alone.
In the current political climate, however, that seems unlikely to happen. Texas and the other eighteen states that have refused to expand Medicaid coverage currently rely on temporary federal funding to reimburse their safety net systems for the uncompensated care of uninsured patients. While half of Harris Health’s $1.3 billion budget comes from county property taxes, for example, about a quarter of it comes from these reimbursements. (Harris Health’s palliative-care services, including the house-calls program, were either created or expanded to their current level using this funding.) US Health and Human Services Secretary Sylvia Burwell has made it clear that while the federal government won’t punish states for not expanding Medicaid, it does expect them to come up with a viable long-term alternative in return for continued funding. Policy-makers in Texas, as in other Republican-controlled states, claim they merely want the freedom to design their own indigent-care systems without federal constraints, but the Texas legislature has made no move to put a long-term strategy in place. Analysts like Begley believe that lawmakers are waiting for the results of the 2016 election to determine their next moves—and in the meantime, safety-net funding is far from secure.
The election could, indeed, be a turning point. Donald Trump, the presumptive Republican presidential nominee, has vowed to repeal the Affordable Care Act—a move that health-policy experts warn would reverse the real progress the law has made in insuring low-income Americans. The Democrats would do the opposite: Presumptive presidential nominee Hillary Clinton plans to expand the ACA toward a goal of universal coverage, while Bernie Sanders proposes placing all Americans and undocumented immigrants under a federally administered, single-payer healthcare program.
“This is another make-or-break election for the Affordable Care Act,” said David Blumenthal, president of the Commonwealth Fund, a health-care research foundation, addressing a conference at the Harvard Law School in January. At the same time, he added, “we are now, for the first time in a generation, actively debating how far left to go with health-care policy.”
But until that debate results in tangible changes in how the health-care system works, the burden of caring for those who are dying in poverty will remain mostly on the shoulders of families like the Portillos, who simply do what they can to ease their loved one’s pain when the system isn’t there to support them.
“Of course,” says Portillo, “there is another way.” And, of course, she’s right.
