Despite her father’s wishes, he was being scheduled for surgery. It wasn’t until their family realized that the surgery would only prolong his life by six months, and he have to endure chemo, radiation, and other side effects, that they realized that surgery was the wrong choice. “[My father] preferred eight weeks of being with his family over eight months of disability and unpleasant treatments,” said Oster.

Oster’s story illustrates how powerful the phrase “Do you want everything done?” can be when patients and families are making end-of-life treatment decisions. A recent study by Dr. Guilio DiDiodato, at the Department of Critical Care Medicine, the Royal Victoria Regional Health Centre, shows that the “Do you want everything done” effect is more than anecdotal–it has a remarkable impact on family members’ treatment decisions.

DiDiodato created a survey that gave respondents a hypothetical scenario in which they were a surrogate decision maker for a loved one who is critically ill. Respondents were asked to decide whether or not to withdraw life-sustaining treatment, based on their loved one’s hypothetical age; prognosis for survival, physical function, and communication; length of stay in the hospital; and stated preferences, all of which were given in the scenario (see table for examples).

Unsurprisingly, the survey respondents subjects were more likely to consider withdrawing life-sustaining therapy in older patients, those with a worse prognosis, those who had been in an ICU for a longer period of time, and those who had expressed their wishes to not be kept on life-sustaining therapy. The most influential factors affecting the decision were age and stated patient preferences.

Knowing that the patient “wanted everything done” had a significant impact on survey respondents’ decisions. Even in the worst case scenarios, when the hypothetical patient was older and had poor prognoses, when patients said they “wanted everything done,” survey respondents said they would withdraw life-sustaining therapy 18.8% of the time on average, compared to nearly 60% of the time for patients with similar characteristics but different stated preferences.

“Regardless of a patient’s age, time spent in ICU, poor prognosis for survival, or recovery, once a surrogate decision maker has heard a patient given an affirmative response to “Do you want everything done?” the likelihood of WLSTs is markedly diminished by a factor of 2–3 times compared with another phrase that may have been used to elicit a patient’s goals of care and values,” DiDiodato writes.

This is problematic because usually when patients agree to have “everything” done, there is little or no discussion about what “everything” entails. It could mean surgery, harsh therapies, or indefinite life support. It could mean that the patient is kept alive but with no ability to communicate or move at all. This presents serious ethical problems for both patients and clinicians.

For example, as Dr. J. Lane Wilson recalled in a heartbreaking story earlier this year, the family of a woman who was dying of sarcoidosis refused palliative treatment, insisting that the clinicians do “everything they could” to keep her alive. What the family did not know was that “doing everything” meant that the patient “spent the last months of her life in the hospital, barely aware of her surroundings other than her struggle to breathe” and that the last thing she saw before she died was “a stranger pounding away at her chest.”

DiDiodato concludes that clinicians “should never use the phrase ‘Do you want everything done?’ as part of soliciting a patient’s goals of care and advance directives. By using this phrase, not only are they asking for informed consent to provide an intervention that does not exist, but they are also potentially exposing both the patient and their surrogate decision maker to a future of needless suffering.”

At the same time, we should make patients and families more aware of the harms and benefits of treatments, and stop equating palliative care with “giving up,” to encourage patients and surrogate decision makers to engage in conversations about what they really want at the end of life, rather than defaulting to “everything.”

The post “Do you want everything done?” How language impacts advance care planning appeared first on Lown Institute.

“Palliative care is attending to the physical, emotional and spiritual suffering of patients and families,” said Dr. Sunita Puri, palliative care specialist at the University of Southern California and author, in an NPR interview. To attend to all of these needs, palliative care teams often include not only a doctor and nurse, but also a social worker, physical therapist, nutritionist, and chaplain. 

“Palliative care is attending to the physical, emotional and spiritual suffering of patients and families,” – Dr. Sunita Puri

Palliative care teams provide unique support to patients that medical teams alone may not be able to do, such as helping patients articulate their treatment goals and life goals, tending to the emotional struggles and anxiety of dealing with a serious illness, and sometimes simply lending an ear to patients’ and families’ concerns. 

“I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients,” said Puri. 

The therapeutic benefit of palliative care is reflected in patient outcomes. A wealth of evidence shows that palliative care improves patients’ quality of life, reduces symptom burden, improves patient and family satisfaction, and reduces unnecessary health care services. Some studies find that palliative care can even improve survival in patients with advanced cancer. 

Despite these benefits, palliative care is vastly underutilized. According to the Center to Advance Palliative Care 2015 Report Card, access to palliative care is increasing, but about one third of hospitals with fifty or more beds still have no palliative care services available. A recent article in JAMA found that rates of palliative care referrals for patients with cardiovascular disease from cardiologists actually declined between 2015 and 2017.

Rates of palliative care referrals for patients with cardiovascular disease from cardiologists actually declined between 2015 and 2017.

Lack of access to palliative care is partly a supply issue. While the field is growing, there is currently only one palliative care specialist for every 20,000 older adults with a severe chronic illness. Experts cite lower pay and lack of fellowship programs as reasons behind the shortage of palliative care specialists. Even when palliative care is available, patients’ insurance may not always cover the cost, because they aren’t considered “near death,” or because multidisciplinary services like mental health care are not covered.

However, there is also a significant lack of awareness among clinicians and patients about the benefits of palliative care and when this type of care can be offered. Many patients and families may avoid palliative care or hospice because there is an expectation to “fight” illness, even if it is harmful to their quality of life. “People feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments,” said Puri.

This attitude is not limited to patients; physicians also struggle to go beyond the “fight or give up” binary. Often stressed for time and lacking clear guidelines for when to offer palliative care, physicians often default to doing everything, writes hospice nurse Theresa Brown in a New York Times op-ed. “Our society makes admissions of medical futility in the face of human frailty harder by equating ‘cure’ with ‘fighting back’ and ‘comfort’ with ‘giving up,'” she writes.

“Our society makes admissions of medical futility in the face of human frailty harder by equating ‘cure’ with ‘fighting back’ and ‘comfort’ with ‘giving up'” — Theresa Brown, RN

Part of making palliative care more accessible is expanding the culture of medicine to valuing more than survival. “In medicine, death is seen as an obstacle to be overcome and physicians are seen as conquerors of death,” said Dr. Ray Barfield, professor of pediatrics and Christian philosophy at Duke University. “Medicine has no concept of valuing what matters to you in life. Medicine’s only answer is don’t die.”

Increasing availability, coverage, and awareness of palliative care should be key goals for improving quality of life and care for patients with serious illness. We also should push back against descriptions of disease as a battle to be won and acknowledge the emotional and mental challenges of living with disease. This shift can happen in medical training, but also by sharing stories, like Jeopardy host Alex Trebek has done by speaking out about the effects of chemotherapy on his mental well-being. 

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Jacobson describes a difficult case in which a patient with advanced lung cancer came to Dana-Farber after her local oncologists told her they didn’t have a way to cure her cancer. Jacobson’s team started her on an aggressive course of radiation, which left the patient significantly weaker and led to a cascade of interventions, exacerbated by the patient’s underlying chronic conditions. A few months later, the patient died in the ICU, never having had a conversation about her goals of treatment.

As Jacobson reflects on this story, he realizes that the desire to “rescue” on the part of both patients and doctors is preventing us from recognizing the harms that aggressive cancer treatments can cause. Despite the “disabling toxicity” and financial costs of seeking aggressive and experimental treatments, we rarely discuss whether this treatment is preferable, or even ethical, because the ubiquitous message to cancer patients is “keep looking for options and don’t give up,” writes Jacobson. 

We rarely discuss whether this aggressive treatment is preferable, or even ethical, because the message to cancer patients is “keep looking for options and don’t give up.”

Jacobson describes how the culture of oncology and professional incentives put more value on rescue than on incrementalism, and acknowledges the responsibility of oncologists to engage with patients in conversations about expectations. However, there are several factors that drive the expectation of rescue for advanced cancer that Jacobson does not mention in his story, but are worth discussing. 

Cancer is a “battle”

One reason patients and doctors expect aggressive treatments for incurable cancers is because of the prevalent but problematic metaphor of cancer as a war. When someone receives a cancer diagnosis, a common response from friends and family is that they can “fight cancer and beat it.” Obituaries often say someone died “after a long battle with cancer.” The message is clear: Cancer treatment is a war and we need to fight with everything we have to survive.

Unfortunately, not all diseases can be overcome. Thinking of cancer or other diseases as battles is discouraging for patients who do everything they can, but don’t find themselves getting better. “If the chemotherapy and radiation and surgery and drugs don’t work, and I die, will people be disappointed in me for not ‘fighting’ hard enough?” asked former cancer patient Xeni Jardin in a CNN op-ed.

Cancer is strange to think of as a battle, because the enemy is inside one’s body and comes from our own cells. As cancer patient Kate Granger wrote in The Guardian a few years ago, “In my world, having cancer is not a fight at all…I live with it and I let its physical and emotional effects wash over me. But I don’t fight it. After all, cancer has arisen from within my own body, from my own cells. To fight it would be ‘waging a war’ on myself.”

Despite pushback from cancer patients and advocates, the metaphor of cancer as a war is widespread and affects patients’ and oncologists’ expectations of cancer treatment.

Hospitals marketing hope

Jacobson points out a few reasons why some advanced cancer patients have expectations of rescue, but misses a large one: marketing by cancer centers that imply that patients can beat the odds and be cured. 

Last year, the consumer watchdog group Truth In Advertising (TINA.org) documented marketing practices of top cancer centers in the US and found that 90% of centers used advertisements with deceptive marketing practices, such as using atypical patient testimonials without including information on typical results for a patient with that diagnosis.

According to TINA, the Dana-Farber Cancer Institute (where Jacobson works) was the 4th-largest marketing spender among all US cancer centers. Dana-Farber’s advertisements included many atypical patient testimonials, implying that patients can “beat the odds.”

As Dr. Lisa Schwartz and Dr. Steven Woloshin wrote in a 2016 editorial about cancer centers’ marketing practices, “Cancer center advertisements generally make appeals based on emotion—not fact. The appeals raise the stakes, in essence saying you are in great danger but can be saved provided you make the right choice or doomed if you do not.”

Is it any wonder that advanced cancer patients come in with the expectation of rescue, when our culture tells cancer patients to fight as hard as possible, and hospital advertisements tell patients that they too can be saved? As Jacobson writes, we have to confront the ethical implications of treating patients with fatal cancers with multiple rounds of chemotherapy, radiation, and other aggressive treatments, without engaging patients in a conversation on their prognosis and treatment goals. 

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As Oster writes in a Washington Post op-ed, even though her father kept saying he did not want chemo and radiation to treat his terminal brain cancer, their family felt enormous pressure to do “everything they could” to prolong his life. It wasn’t until their family realized that he would live only six months longer with surgery, and have to endure chemo, radiation, and other side effects, that they realized that surgery was the wrong choice.  

“He preferred eight weeks of being with his family over eight months of disability and unpleasant treatments,” writes Oster. 

Oster is by no means the only family dealing with the difficult choice of what treatment to give their loved ones facing a limited life span. Her op-ed garnered hundreds of comments from families going through the same challenge. A recent Kaiser Health News article highlights the widespread practice of older patients undergoing surgery from which they are unlikely to benefit. Even patients who repeatedly voice their desire against more medical intervention, or sign a DNR, can find themselves in surgery or having a procedure without their informed consent. 

When it comes to end-of-life care, we have a crisis of communication. Most older patients with limited life expectancy would decline surgery to prolong their life if the outcome were severe functional impairment. However, in the moment when we have to decide whether or not to have surgery, the decision becomes very stressful and information gets lost. Often patients and their families aren’t aware of the likelihood of functional impairment after surgery – they believe that a successful surgery would mean “going back to normal.” Doctors’ descriptions of what is likely to happen after surgery can be vague, or focus on the acute problem (“We can fix this”) rather than looking at how the intervention would affect the patient as a whole.

Fortunately, surgeons like Dr. Margaret Schwartze at the University of Wisconsin School of Medicine and Public Health are working on communication tools that make these difficult decisions more clear. Their team’s “Best Case/ Worst Case” decision tool uses stories, not statistics, to describe the best and worst possible outcomes of surgery. Breaking bad news is never easy, but it’s essential to communicate the options clearly, so patients and their families can make informed choices.

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