[B]ecause people are now living longer and often healthier lives, the rate of some illnesses that are more likely to develop with age has risen. These illnesses include dementia. In fact, the number of us living with dementia was already 47 million worldwide in 2015. It could reach 131 million by 2050.
Dementia is a general term that includes different types of mental decline. The most common type of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases.
As Alzheimer’s disease worsens, older adults may become more likely to have trouble performing daily activities, can develop trouble swallowing, and may become less active. This increases the risk for other concerns like infections. These infections, such as pneumonia, can increase the risk for death. As a result, the cause of death for people living with Alzheimer’s disease is often infections or some other cause, rather than the Alzheimer’s disease itself.
A team of researchers from Belgium recently studied how people with Alzheimer’s disease use medical services during their final months. The goal was to learn more about the best ways to help older adults with dementia at the end of their lives. Their study was published in the Journal of the American Geriatrics Society.
The researchers studied information from people with Alzheimer’s disease living in Belgium who died during 2012. They compared two groups of people who were diagnosed with Alzheimer’s disease.
One group had death certificates that listed Alzheimer’s disease as the cause of death. This was the group who died because of Alzheimer’s disease.
The second group included individuals diagnosed with Alzheimer’s disease but with death certificates that listed another cause of death (like infections). This was the group who died with Alzheimer’s disease (but not of Alzheimer’s disease).
The researchers looked at the healthcare resources the two groups used in the last six months of life.
Of the more than 11,000 people in the study, 77 percent had something other than Alzheimer’s disease listed as the cause of death on their death certificate while 22 percent died of Alzheimer’s disease. The average age of these individuals was 85, and most were women.
People who died with Alzheimer’s disease were more likely to have at least one hospital admission and more intensive care unit (ICU) stays. People in both groups had about 12 visits with a doctor during the last six months of their lives.
However, the people who died with Alzheimer’s disease received fewer palliative care services. Palliative care helps keep us comfortable when we are near death or dealing with a serious illness. This included fewer palliative home care services during the last six months of their lives. They also spent fewer days in a nursing home.
People in the study whose cause of death was listed as something other than Alzheimer’s disease were also more likely to have invasive procedures compared to people who died of Alzheimer’s disease. These invasive procedures included being put on breathing machines and being resuscitated (the medical term for reviving someone from unconsciousness or apparent death).
The researchers concluded that older adults whose cause of death was Alzheimer’s disease used fewer healthcare resources than people whose cause of death was listed as something else even though they had been diagnosed with Alzheimer’s disease. The researchers suggested that recognizing late-stage Alzheimer’s disease as an end-of-life condition could influence healthcare providers to use more palliative care resources and fewer invasive procedures.
Because it’s time to start thinking about death differently.
By Laura Dorwart
[W]hen Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.
What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”
“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”
Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:
“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”
This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.
Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”
Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.
When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.
Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”
[W]hen states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.
“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”
Here are 5 things to know about the article.
1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.
2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.
3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.
4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.
5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.
Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.
Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.
Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.
It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?
Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.
But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.
A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is underutilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.
Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.
Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.
Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.
The private sector has led the way in addressing the underutilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.
Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.
And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.
But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.
As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.
[W]hat can be done about negative stereotypes that portray older adults as out-of-touch, useless, feeble, incompetent, pitiful and irrelevant?
From late-night TV comedy shows where supposedly clueless older people are the butt of jokes to ads for anti-aging creams equating youth with beauty and wrinkles with decay, harsh and unflattering images shape assumptions about aging. Although people may hope for good health and happiness, in practice they tend to believe that growing older involves deterioration and decline, according to reports from the Reframing Aging Initiative.
Dismal expectations can become self-fulfilling as people start experiencing changes associated with growing older — aching knees or problems with hearing, for instance. If a person has internalized negative stereotypes, his confidence may be eroded, stress responses activated, motivation diminished (“I’m old, and it’s too late to change things”) and a sense of efficacy (“I can do that”) impaired.
Health often suffers as a result, according to studies showing that older adults who hold negative stereotypes tend to walk slowly, experience memory problems and recover less fully from a fall or fracture, among other ramifications. By contrast, seniors whose view of aging is primarily positive live 7.5 years longer.
Become aware of implicit biases. Implicit biases are automatic, unexamined thoughts that reside below the level of consciousness. An example: the sight of an older person using a cane might trigger associations with “dependency” and “incompetence” — negative biases.
Forum attendee Dr. Charlotte Yeh, chief medical officer for AARP Services Inc., spoke of her experience after being struck by a car and undergoing a lengthy, painful process of rehabilitation. Limping and using a cane, she routinely found strangers treating her as if she were helpless.
“I would come home feeling terrible about myself,” she said. Decorating her cane with ribbons and flowers turned things around. “People were like ‘Oh, my God that’s so cool,’” said Yeh, who noted that the decorations evoked the positivity associated with creativity instead of the negativity associated with disability.
Implicit biases can be difficult to discover, insofar as they coexist with explicit thoughts that seem to contradict them. For example, implicitly, someone may feel “being old is terrible” while explicitly that person may think: “We need to do more, as a society, to value older people.” Yet this kind of conflict may go unrecognized.
To identify implicit bias, pay attention to your automatic responses. If you find yourself flinching at the sight of wrinkles when you look in the bathroom mirror, for instance, acknowledge this reaction and then ask yourself, “Why is this upsetting?”
Use strategies to challenge biases. Patricia Devine, a professor of psychology at the University of Wisconsin-Madison who studies ways to reduce racial prejudice, calls this “tuning in” to habits of mind that usually go unexamined.
Resolving to change these habits isn’t enough, she said, at the NAS forum’s gathering in New York City: “You need strategies.” Her research shows that five strategies are effective:
Replace stereotypes. This entails becoming aware of and then altering responses informed by stereotypes. Instead of assuming a senior with a cane needs your help, for instance, you might ask, “Would you like assistance?” — a question that respects an individual’s autonomy.
Embrace new images. This involves thinking about people who don’t fit the stereotype you’ve acknowledged. This could be a group of people (older athletes), a famous person (TV producer Norman Lear, now 95, who just sold a show on aging to NBC) or someone you know (a cherished older friend).
Individualize it. The more we know about people, the less we’re likely to think of them as a group characterized by stereotypes. Delve into specifics. What unique challenges does an older person face? How does she cope day to day?
Switch perspectives. This involves imagining yourself as a member of the group you’ve been stereotyping. What would it be like if strangers patronized you and called you “sweetie” or “dear,” for example?
Make contact. Interact with the people you’ve been stereotyping. Go visit and talk with that friend who’s now living in a retirement community.
Devine’s research hasn’t looked specifically at older adults; the examples above come from other sources. But she’s optimistic that the basic lesson she’s learned, “prejudice is a habit that can be broken,” applies nonetheless.
Emphasize the positive. Another strategy — strengthening implicit positive stereotypes — comes from Becca Levy, a professor of epidemiology and psychology at Yale University and a leading researcher in this field.
In a 2016 study, she and several colleagues demonstrated that exposing older adults to subliminal positive messages about aging several times over the course of a month improved their mobility and balance — crucial measures of physical function.
The messages were embedded in word blocks that flashed quickly across a computer screen, including descriptors such as wise, creative, spry and fit. The weekly sessions were about 15 minutes long, proving that even a relatively short exposure to positive images of aging can make a difference.
At the forum, Levy noted that 196 countries across the world have committed to support the World Health Organization’s fledgling campaign to end ageism — discrimination against people simply because they are old. Bolstering positive images of aging and countering the effect of negative stereotypes needs to be a central part of that endeavor, she remarked. It’s also something older adults can do, individually, by choosing to focus on what’s going well in their lives rather than what’s going wrong.
Claim a seat at the table. “Nothing about us without us” is a clarion call of disability activists, who have demanded that their right to participate fully in society be recognized and made possible by adequate accommodations such as ramps that allow people in wheelchairs to enter public buildings.
So far, however, seniors haven’t similarly insisted on inclusion, making it easier to overlook the ways in which they’re marginalized.
At the forum, Kathy Greenlee, vice president of aging and health policy at the Center for Practical Bioethics in Kansas City and formerly assistant secretary for aging in the U.S. Department of Health and Human Services, called for a new wave of advocacy by and for seniors, saying, “We need more older people talking publicly about themselves and their lives.”
“Everybody is battling aging by themselves, reinforcing the notion that how someone ages is that individual’s responsibility” rather than a collective responsibility, she explained.
Underscoring Greenlee’s point, the forum didn’t feature any older adult speakers discussing their experiences with aging and disability.
In a private conversation, however, Fernando Torres-Gil, the forum’s co-chair and professor of social welfare and public policy at UCLA, spoke of those themes.
Torres-Gil contracted polio when he was 6 months old and spent most of his childhood and adolescence at what was then called the Shriners Hospital for Crippled Children in San Francisco. Back then, kids with polio were shunned. “It’s a real tough thing to be excluded,” he remembered.
His advice to older adults whose self-image is threatened by the onset of impairment: “Persevere with optimism. Hang in there. Don’t give up. And never feel sorry for yourself.”
Now age 69, Torres-Gil struggles with post-polio syndrome and has to walk with crutches and leg braces, which he had abandoned in young adulthood and midlife. “I’m getting ready for my motorized scooter,” he said with a smile, then quickly turned serious.
“The thing is to accept whatever is happening to you, not deny it,” he said, speaking about adjusting attitudes about aging. “You can’t keep things as they are: You have to go through a necessary reassessment of what’s possible. The thing is to do it with graciousness, not bitterness, and to learn how to ask for help, acknowledging the reality of interdependence.”
intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor
ByAllison Bond
[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.
One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.
Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.
“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.
A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.
After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.
We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?
Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.
Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.
There’s got to be a way to close these gaps.
The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.
It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.
Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.
There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.
Wendy Van de Bogart of Canton had a variety of palliative care when she was treated for cancer, but it wasn’t called that, and if it had been she would have been worried. Many people confuse palliative care with end-of-life hospice care.
By THERESA SULLIVAN BARGER
[W]hen Wendy Van de Bogart was diagnosed with stage 3, HER-2 positive breast cancer, she asked her oncologist whether her treatment plan was to get rid of the cancer or just make her comfortable.
“We’re not treating this palliatively,” she remembers him saying. “It’s just to kill the cancer. We’re giving you everything to fight it with everything we’ve got.”
But while she received chemotherapy, a mastectomy, radiation and preventative medications, she also received palliative care. She just didn’t realize it because nobody used the term.
“It’s probably a good thing, because I would have thought I was on my way out the door,” says the Canton mother of three.
Some of the palliative or supportive care was provided through her cancer treatment providers, the Center for Cancer Care at Charlotte Hungerford Hospital in Torrington and at Yale New Haven Health’s Smilow Cancer Hospital, and some she found on her own, with mixed results.
Following her surgery, her clinical team connected her with a physical therapist to help her get her range of motion back and help with some swelling (lymphodema). She sought out a dietician friend, herself a cancer survivor, for nutritional advice. She saw a therapist to help her deal with the stress, a naturopathic physician for vitamins and a hypnotist someone recommended.
Van de Bogart’s experience is fairly typical. The medical community, cancer patients and their families routinely equate palliative care with hospice care. They’re not synonymous. While both are designed to provide support and symptom management to people with a serious illness, hospice is intended for people whose physicians have determined they have six months or less to live and who are no longer actively fighting the disease.
“They view us as the death squad,” says Dr. Henry Schneiderman, palliative care physician with St. Francis Hospital and Medical Center in Hartford. “The conflation of hospice and palliative care is 103 percent of the general population and 100 percent with health care.”
Palliative Care Vs. Hospice
All of hospice is palliative care, but not all palliative care is hospice, says Colleen Mulkerin, director, palliative care, social work and spiritual care at Hartford Hospital. Palliative care, and the medical sub-specialty, palliative medicine, is specialized medical care for people living with any serious illness, including cancer, heart disease, stroke, Alzheimer’s, Parkinson’s, kidney disease and diabetes, according to the Center to Advance Palliative Care. It focuses on providing relief from the symptoms and stress of living with a serious illness with the goal of improving both the patient’s and family’s quality of life.
“The exciting thing about palliative care — you don’t have to accept anything or give anything up,” Mulkerin says.
Palliative care recognizes that there’s a person and a family invested in the treatment of the illness, she says. While the oncology team’s focus is on battling the cancer, the palliative care team is providing the support that the person and caregivers need from the time patients receive their diagnosis, through treatment and follow up care.
“We often get asked to assist patients and families with clarifying their goals. That can include advance care planning and symptom management,” says Dr. Laura Morrison, an attending physician at Smilow Cancer Hospital who is Yale New Haven Hospital’s director of palliative medicine education. “It’s really not at all about dying. It’s really about living the best that you can.”
While palliative care doctors may prescribe medications to help with pain, nausea and depression, the other forms of palliative care include therapeutic massage, cognitive behavioral therapy, acupuncture, reiki, pet, art or music therapy, help with finding financial support and guidance on writing advance directives, which spell out the patient’s wishes for end-of-life medical interventions. Some cancer centers offer massage and mental health support to the patients’ caregivers, since lessening their stress helps everyone.
Studies Reveal Benefits
Multiple studies show that patients who receive palliative care live longer with a better quality of life. A study reported in the New England Journal of Medicine in 2010 concluded that people with metastatic lung cancer who received early palliative care had less depression, improved quality of life and survived 2.7 months longer than those who did not receive palliative care.
According to an Institute of Medicine study published in 2014 in the Journal of Palliative Medicine, palliative care results in “a better patient experience with improved communication and less distress; better quality of care with less aggressive end-of-life care and more use of home and hospice care when appropriate; equal or even better survival; and significant cost savings,” of an average of $2,700 per person.
“When symptoms are better controlled, when patients are coping better emotionally and when people are able to make sure their treatment aligns with their goals, we know from the literature that people do better and so do their family members,” Morrison says.
Why The Misconception?
Palliative care remains misunderstood, advocates say, because it’s a fairly new specialty, and the holistic approach to patient care has been foreign to Western medicine’s more recent focus on medical specialties.
“So often, in Western medicine, we’re asked to give all control up to our medical team,” says Dr. Kathleen Mueller, medical director at the Center for Integrative Medicine at St. Francis Hospital and Medical Center in Hartford. “I think what we’ve lost is what we can do ourselves. What we can do is work on food, movement, relationships and stress reduction. If you can make yourself more whole going into chemo, you’re going to come out better on the other end.”
While cancer treatment facilities’ palliative care services differ somewhat in how they’re staffed and the support that’s offered, most patients are referred to palliative care by their doctors or nurses. Patients are told they can ask for support, but most don’t ask.
“I think it’s really hard to mobilize the resources if you’re not referred. You’d have to have a really skilled patient or family member,” Mueller says. “I do as many lectures as I possibly can to physicians and nurses to let them know this is available, and still I will have someone say, ‘Why didn’t I know you were here 10 years ago?'”
Even in the medical field, palliative and hospice care are linked, so many oncologists incorrectly view palliative care as end-of-life care, says Morrison. Some providers are moving toward calling it “supportive care,” she says.
MD Anderson Cancer Center in Texas conducted a study that found clinicians referred patients to palliative care sooner and were less distressed about it when it was called “supportive” rather than “palliative” care.
Most subspecialists who treat serious illnesses, Schneiderman says, operate in warrior-mode doing battle against disease; some see a referral to palliative care as a defeat.
As a result, “palliative care is brought in too late. Hospice is brought in too late,” he said. “It’s always too soon until it’s too late.”
UConn Health provides palliative care, but calls it “support care” on the “Patient Resource Center” pages of its website.
“I did some research and found cancer centers, [including MD Anderson,] were moving more towards ‘supportive care,'” says Sarah Loschiavo, a nurse practitioner who serves as the gatekeeper to supportive services offered to cancer patients. “We decided that [patients] would feel more comfortable with ‘supportive care.'”
Financial Burdens
Living with the uncertainty of breast cancer is challenging for patients and their loved ones, and the added financial burden of copayments and missed work magnifies the stress.
Van de Bogart was receiving chemotherapy in the winter, which is always a challenging time for her family financially because her husband’s business is slowest during the winter months.
One day, when she was receiving an infusion, the social worker stopped by and sat with each patient, asking if there were any issues she could help with. Although Van de Bogart had rated financial concerns as only 1 out of a possible 10 on a questionnaire about sources of stress, the social worker asked her about it. She admitted that the cancer added further strain to the family’s budget.
“She ended up getting some grants from some local cancer funds,” Van de Bogart says. The social worker filled out the application forms for her, and got the family some grocery store gift cards.
“That was really helpful,” she says. “I didn’t seek her out.”
