A Story of Palliative Care

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The Dallas Morning News has done a wonderful series on end-of-life care. Thanks to 
Annie for pointing it out.

Here are excerpts from part one, written by Lee Hancock, describing an encounter at a Baylor University Medical School ICU unit between Ms. Patel, a palliative care team nurse, and Dr. Edward Taylor, a 36-year-old trauma surgeon.

Like a palliative care doctor, Patel had been specially trained to help patients who may be dying—and their families—confront excruciating questions about how much care they want.   These specialists also are trained to manage pain, a fine art that too many U.S. hospitals do not practice. Finally, palliative care specialists help other doctors and nurses face the fact that they may be losing a patient.
In this case, Hancock explains: “The middle-aged accident victim had been stranded there for weeks, in a high-tech limbo.”

" ‘He looks a mess,’" Ms. Patel told the surgeon. ‘It doesn't seem like we're going to make him better.’

“‘I don't know if we can say that,’ Dr. Taylor said, looking down at the tiny, Indian-born nurse.

“Ms. Patel's gray scrubs would fit a fourth-grader, but her vibrance and her striking British accent drew outsized attention. She was a legend throughout the medical center, where she had worked since coming from England in 1990…

“Dr. Taylor, 36, called in Ms. Patel that Thursday morning because his patient was the sickest in the unit. But the man's relatives didn't seem to get it. In the twilight zone of the ICU, it was hard for bewildered families to grasp that using more drugs and devices wasn't always the best way to show love.

“Dr. Taylor was known for connecting with patients and families. But the palliative team spent hours at bedsides, helping frightened people navigate the hardest choices. Some of their patients, like Dr. Taylor's trauma patient, were hit by sudden crises. Many were overwhelmed with chronic complications of old age. Some had organ transplants, only to see the medical miracles fail.

“Dr. Robert Fine, the palliative team's leader and Ms. Patel's mentor, coached constantly: Support by listening. Ask, don't just tell. Assure that everything medically possible is being done, and reach and teach both sides of the bed, because doctors and nurses also struggle when their patients don't get better…

“’The past week or so, I've been really blunt [when talking with the family] Dr. Taylor told Ms. Patel.

“’Have you said: “He's going to die,”’ Ms. Patel asked, ‘in those words?"’

“The surgeon looked flustered. No one had broached what the nurse thought the family needed to understand: If that patient went into cardiac arrest or stopped breathing, cardiopulmonary resuscitation wouldn't save him. Without a physician's do-not-resuscitate (DNR) order, he would endure a ‘code blue’ resuscitation attempt and probably die anyway, after needless suffering.

"’I haven't said he's going to [die]. I've said most likely he's going to. I don't think we should shock them,’" Dr. Taylor said. ‘They've said, “Yeah, but OK, do everything.'” I can't tell them, 'I'm not going to do it because it's not going to work.' "

"’Why?’" Ms. Patel pressed. ‘Is that what you believe? Is it futile?"

"’Mostly,’" Dr. Taylor said, backpedaling.

“Ms. Patel looked at him evenly. Dr. Taylor towered over her, but she pushed the young doctor for an answer. He shifted against the wall.

‘"Something's going to happen that's going to get him,"’ he said. "’Most likely he's going to have an event that's fatal to him. The longer he's in the ICU, the worse it tends to be.’

"’We can keep him alive,’" Ms. Patel said. ‘But we can't make him better, Dr. Taylor’

“The surgeon shrugged. ‘We all joke about having 'DNR' tattooed on our foreheads,’ he said, ‘so we don't have to go through what we have people go through here.’

“Blank death certificates hit the desks of each intern and resident as they dug into cafeteria chicken Caesar salads in a first-floor classroom.

“’Fill them out for yourselves’, Dr. Fine  [the palliative care specialist] instructed Baylor's newest doctors as
Ms. Patel looked on. ‘The real deal – how, where and when you think you will die.’

“A half-hour after Ms. Patel's chat with the trauma surgeon and 20 minutes into Dr. Fine's lunchtime lecture, the young physicians found themselves face-to-face with modern culture's last taboo and medicine's greatest weakness.

“Aversion to their own mortality was at the core of doctors' inhibitions in helping patients at the end of life, explained Dr. Fine. It made physicians hide behind stiff white coats, rush from rooms, and turn clinical and cold when they couldn't fix or rescue.

“The three dozen tired young doctors in rumpled scrubs and lab coats gave themselves heart attacks, car wrecks, cancers. Few chose the devastating, chronic conditions of old age that they saw and treated daily.”

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Later in part one, Hancock explains that the palliative care team at Baylor is relatively new.
But it has “gotten steadily busier; it saw 554 patients in 2007. But attending doctors had to OK a palliative care consultation for patients, and Dr. Fine joked that some physicians were never-say-die ‘resistant strains.’

“The palliative team seldom was asked for consults on some floors – including an oncology unit where Dr. Fine recently saw a patient dying in horrific pain and heard from distressed nurses about five more patients in similar straits…”

I feel no need to editorialize. Hancock’s piece is extremely well-written. But let me add a few facts.

Your chances of finding palliative care in the U.S. depends, to a large degree, on where you live. Nearly half of U.S. hospitals do not offer any palliative care.  The specialty has been growing fastest at not-for-profit hospitals in the Midwest and the West. (I would be very interested in comments as to why palliative care is less widespread in the East.) 

You also are more likely to find palliative care doctors and nurses who know how to manage pain in larger hospitals. 72.2 percent of hospitals with more than 249 beds have a palliative care team, while fewer small hospitals (with less than 50 beds) offer these services. This is something to keep in mind if you or a loved one is seriously ill. Are you sure you want to be at the small suburban hospital close to home? A large teaching hospital might be a safer choice:  84% of medical schools are associated with at least one hospital that has a palliative care program, according to a study published in October in The Palliative Care Journal.

This means that in the future more doctors will have access to training in palliative care. But will they choose the specialty? It takes an especially dedicated healthcare provider to work with the dying. And currently, we pay health care workers relatively little for palliative care. Meanwhile, some of their colleagues, like the oncologists at Baylor, resist having palliative care teams counsel “their” patients.

But reimbursements could increase if Medicare adjusts its fee schedule. According to the study, in hospitals where palliative care is available, Medicare bills tend to be lower. "This implies that palliative care is consistent with other innovations—when the right care is applied to the right patient at the right time, overall costs go down because futile or ineffective approaches are abandoned in favor of the effective new intervention," says Charles Guten, the editor-in-chief of the Journal.

19 thoughts on “A Story of Palliative Care”

  1. Another wonderful piece, Maggie. I do want to note, however — regarding your mention that palliative care “has been growing fastest at not-for-profit hospitals in the Midwest and the West” and then your subsequent parenthetical query that you “would be very interested in comments as to why palliative care is less widespread in the East” — that the converse of “growing fastest” is not necessarily “less widespread.” In fact, that study in the October issue of _The Palliative Care Journal_ gave only three states a grade of “A” for palliative-care services, and two of them were in the East — New Hampshire and Vermont.
    But your overall point — that there is considerable variation in the availability of palliative care services — is certainly well taken. And the _Dallas Morning News_ piece that you shared excerpts from is really well done. Many thanks for highlighting it.

  2. Another wonderful piece, Maggie. I do want to note, however — regarding your mention that palliative care “has been growing fastest at not-for-profit hospitals in the Midwest and the West” and then your subsequent parenthetical query that you “would be very interested in comments as to why palliative care is less widespread in the East” — that the converse of “growing fastest” is not necessarily “less widespread.” In fact, that study in the October issue of _The Palliative Care Journal_ gave only three states a grade of “A” for palliative-care services, and two of them were in the East — New Hampshire and Vermont.
    But your overall point — that there is considerable variation in the availability of palliative care services — is certainly well taken. And the _Dallas Morning News_ piece that you shared excerpts from is really well done. Many thanks for highlighting it.

  3. Thanks for writing this, Maggie.
    I think that as people become educated about their options, and that care will increasingly be put in place which is aimed at comfort, control and assurance, that we’ll eventually move away from the default view that extraordinary care is the norm. Perhaps making DNR orders an opt OUT program would help, to that end. It would force a discussion with the admitting officer to the contrary, and the culture would eventually change from not speaking about death and dying to one of proactively making one’s wishes known and providing many opportunities for having those discussions.
    Moreover, there is hubris in any provider treating death as failure. Preventable death is a failure of some sort by contrast, but not neccesarily the physician or nurse’s failure, either. If we began to treat death as a natural end point instead of as a dreaded enemy, we’d get a lot farther. There is great utility in examining the ethics around hospice and palliative care, and perhaps adopting those instead of the high tech hardware store array of the application of technology and weaponry against death when the outcome is only going to come at the great expense of the use of scarce resources at high cost and a high degree of prolonged suffering. Doesn’t look so attractive anymore, does it?
    There is also a mid range theory of comfort with tools designed to be used by patients and their families – one especially for those closest to the patient to be able to assess for comfort when the patient is no longer able to verbalize his level of discomfort or pain.
    That theorist is Kathy Kolcaba, a gerontologic nurse and faculty member at the University of Akron in Ohio. Her website,
    The Comfort Line, offers the tools gratis, as well as many resources for comfort in care.
    http://www.thecomfortline.com/
    Physicians, nurses, patients and their families might find this useful.
    There are only 15 masters level programs listed for palliative care nursing by the Hospice and Palliative Nursing Association.
    http://www.hpna.org/DisplayPage.aspx?Title=About%20HPNA
    http://www.hpna.org/DisplayPage.aspx?Title=Degree%20Programs
    Its code of ethics states:
    “The Hospice and Palliative Nurses Association (HPNA) is dedicated to quality end-of-life care through the promotion of excellence in hospice and palliative nursing. HPNA strives to promote excellence in hospice and palliative nursing through its mission, purpose, and strategic plan.
    As an organization, HPNA acts with moral integrity and operates within a moral framework built on the following ethical principles:
    * Respect for persons: a moral obligation to honor the intrinsic worth and uniqueness of each person; to respect self determination, diversity and privacy and promote ethical interactions.
    * Beneficence: a moral obligation to promote good and prevent or remove harm; to promote the welfare, health and safety of society and individuals in accordance with their beliefs, values, and preferences.
    * Justice: a moral obligation to be fair and promote equity, nondiscrimination, and the distribution of benefits and burdens based on needs and resources available; to advocate on another’s behalf when necessary.”
    http://www.hpna.org/DisplayPage.aspx?Title=Code%20of%20Ethics

  4. Dana–
    Good to hear from you . .
    Yes, it is very well-written isn’t it?
    On Vt. and NH, I don’t tend ot think of them as part of the “East Coast” medical culture which runs from Boston down to Florida, but rather as part of “Canada South”–which includes states in the NOrthwest such as Minnesota where healthcare is collaborative, more patient-centered and forward-looking.

  5. I would be interested in learning more about how doctors and nurses in Canada and Western Europe define good, sound medical practice as it relates to end of life care. For patients and families that want to “do everything,” what options are even presented to them as compared to here? Do differences in the litigation environment play a role in care delivery? Is palliative care standard practice elsewhere and how does payment for it compare to the U.S.? How significant a factor are differences in patient expectations, culture, religious beliefs and the like? Could we move toward a more flexible default protocol that would allow doctors and nurses to apply common sense depending on circumstances in the absence of a living will or advance medical directive without having to worry about being sued? I think end of life care is one of the weakest (and most costly) parts of our medical system. With some effort and determination and, perhaps, a willingness to learn from other countries, I think we could do a lot better.

  6. Barry–
    End of life care varies greatly depending on the culture, ranging from physician-assisted suicide being legal in some countries to Italy where
    a doctor generally doesn’t tell you have cancer, but if he can’t do anything for you, he will send you home with morphine.
    The U.S. is different because a) we are more religous than most developed countries (or at least when it comes to right-to-life issues we are) and that makes end of life care a huge moral issue.
    If you google the palliative care experts in this country, you will find groups and organizations saying terrible things about them.
    This is a problem.
    Our cultural fear of death is what drives the end-of-life spending. In general, Europeans are simply more
    philosphical about death.
    Patients and their relatives are much less likely to demand “do everything” and doctors are not trained to provide such aggressive, intensive
    care.
    Doctors and nurses do not want the responsibility of “using common sense” in the absence of a living will. (This doesn’t have to do with fear of malpractice; even if the law gave them the power, most do not want to be in
    the position of deciding who lives and who dies.)
    Palliative care specialists are not paid particuarly well in the UK-but doctors in general are not paid particulary well.
    Palliative care is most commonplace in the UK but is widespread in Europe and in recent years has spread into Eastern Europe.
    As long as we have ways of keeping people alive, the state cannot tell people: we will not keep your relative alive. In other words, laws aren’t going to solve this problem.
    And we can’t say that people who have the money to pay for it will be kept alive, but not the middle-class.
    Public education, reglious leaders and medical ethicists coming together
    to talk about attitudes
    toward death and dying, and making sure that all hospitals have palliative care teams can help.
    But note, in hospitals, the palliative care team cannot approach a patient unless his or her doctor gives permission, and at Baylor, the oncologists won’t give permission . .
    It’s just very hard to change a country’s culture on something like this. It has little to do with reason or rational argument.

  7. Maggie,
    Thanks for the explanation of the cultural differences between the U.S. and elsewhere that surround end of life care. It is interesting to note, I think, that these cultural and attitudinal differences, which also apply to litigation and defensive medicine, are important factors that make healthcare costs in the U.S. materially higher than elsewhere but have nothing to do with whether providers and suppliers are for profit or not for profit.
    Regarding the fact that palliative care teams require the permission of the attending doctor to approach the patient, what happens if a patient or his or her advocate requests a consultation with a palliative care team? Is the attending doctor likely to object? If so, perhaps the right to a consult if requested and if a palliative care team exists at the hospital should be included in the hospital’s list of patients’ rights.

  8. Barry–
    An interesting question as to whether the patient or family can ask for a consult . ..
    The answer, I think ,is that most American families and pustiets have never heard of pallaitive care.
    (They have heard of hospice–which means that you have given up, don’t want more treatment and have accepted that you are dying. Palliative care always gives you the patient the option of more treatment–while explaining the risks and benfits.
    Moreover, if you know about palliative care, want it, and mention it to your oncologist who reacts in an angry, dismissive manner (or in a smooth dismissive manner) what do you do?
    Your oncologist is your life-line. You don’t want to alienate him. If you are (probably) dying, it’s too late to switch doctors.
    Finally, I agree that these cultural differences
    have little to do with whether health systems in various countries are for-profit or non-rpfoit.
    But I can’t help but wonder:
    Do Americans have a “faith” in for-profit-markets solving health care problems because they have a similar “faith” in higher market powers?
    (i.e. the “invisible hand” of Adam Smith?
    In many ways, Europeans are simply more sketical (even cynical) about higher powers and “authorities”– clergy, govt’ officials, corproate leadership. We are much more likely to think that these higher power have our best interest in mind.
    For example, we re-elected George Bush, with the majority of American still believing (I have to assume) that he war in Iraq woudl turn out well. that the administration was doing a good job with the economy, etc.
    By contrast, AFter enduring ocrruption that goes back to the Middle Ages (in church, state and commerce,) Europeans are less naive, much more cynical.

  9. Annie
    Thank you very much for the omment –and the lnks.
    I wil be using the links; I want to learn more about palliatve care, which seems to me the care we need most at one of the two most important times of our healthcare lives (birth (care for mother as well as baby) and death.)
    Best, Maggie

  10. Maggie,
    You might be interested in the reasons given to our medical staff when the large, very profitable Midwest Hospital where I practiced closed its palliative care unit. The first reason was that the margin for this service was very slim. However, the second and more important (in the eyes of the hospital administration) reason was the very success of the unit. Because this unit drew from throughout the community, it brought “too many” very ill and dying patients into the hospital, potentially making the outcomes rates look bad and interfering with the quest for various “star” awards!

  11. “Perhaps making DNR orders an opt OUT program would help, to that end.”
    This is an absolutely absurd idea. Each case should be considered individually. I’m not slapping a DNR/DNI order by default on a 6 year old boy who has his whole life in front of him unless I’m DAMN SURE, not just “kinda sure” that there’s no hope for survival for him.
    Conversely, a 54 y/o mother of 5 who was diagnosed with pancreatic cancer who has another 6 months or so to live is profoundly different than a 95 year old nursing home resident with no family in the area. You cant treat those patients the same way.
    Your proposal that everybody coming into the hospital has a default DNR order is dangerous and outrageous.

  12. Maggie,
    I dispute your assertion and blanket statement that “oncologists wont give permission” for palliative care.
    First off, oncologists are probably better at palliative care issues than another medical/surgical specialty. They deal with end of life issues on a daily basis.
    Secondly, blanket palliative care consults on every patient would be a ridiculous waste of resources at a time when healthcare spending increases by double digits every year. You’re arguing for even more spending?
    Thirdly, I do think every hospital should have a palliative care team, and doctors should be open to using them. However, the primary team knows the patient better than everybody else in the hospital. If patients desire a palliative consult, no problem.
    Fourthly, training/paying doctors to be “palliative care” experts is a ridiculous waste of money/resources. Instead, hire social workers at much cheaper rates. They can be trained in palliative issues better and cheaper, and its a more natural fit for the job.

  13. So long as the so-called “culture war” rages on in the US, and permeates the debate about how to reform the US health care system, end-of-life care, and by extension palliative care, will be relegated to vituperative pronouncements by ideologues quick to weigh in with their own beliefs about what constitutes “appropriate” end-of-life care. The Schiavo case was high-profile to be sure, but unfortunately, not an isolated one.
    Why should we expect the public to understand palliative medicine when medical education professionals are split in their views of end-of-life care? A 2002 national survey of Medical Education Deans about end-of-life care in the curriculum revealed that a majority of the deans opposed required courses or clerkships that focused on end-of-life care. And when the work of palliative medicine physicians is equated with social work, it should serve as a stark reminder that palliative medicine remains one part accomplishment for five parts of potential.
    Tim Cousounis
    DAI Palliative Care Group

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