SUPPORT After All These Years

From GeriPal, an article on the legacy of the SUPPORT study:

November 2010 marks the 15th anniversary of the publication of the SUPPORT Project, the largest study of end of life care ever conducted. This study that shook the medical world. SUPPORT was an ambitious effort sponsored by the Robert Wood Johnson Foundation to improve the quality of care towards the end of life in patients with serious illness. The finding that this $29 million effort had absolutely no impact on improving the quality of end of life care was stunning.

The failure of the intervention to improve end of life care and the strikingly poor quality of end of life care documented by SUPPORT led to calls for action in the lay media and by advocates of better end of life care. SUPPORT remains the most influential study of end of life care ever published, and with over 1300 citations in the peer-reviewed literature, by far the most cited.

The SUPPORT intervention study randomized over 4000 patients hospital at 5 US hospitals to usual care or the SUPPORT intervention. Patients had one of 9 index conditions, such as sepsis with organ system failure, or metastatic lung cancer, and clinical characteristics suggesting a 50% or greater 6 month mortality. Physicians of patients in the intervention received received estimates of the probability of survival over six months, estimates of the outcomes of CPR, and estimates of the probability of severe functional disability at 2 months. The intervention also provided documentation of patient and family care preferences and provided access to a nurse interventionist to facilitate communication, including helping to carry out needed communication and facilitating meetings.

The effect of this intervention? NADA. Nothing. There was no impact on each of these key outcome measures:

• Earlier writing of DNR orders
• Physicians knowledge of their patients' preferences for CPR
• Number of days spent in an ICU before death
• Patient reports of moderate or severe pain
• Use of hospital resources

The SUPPORT project showed that the provision of prognostic information, and enhancing communication were insufficient in the 1995 care environment to improve outcomes at the end of life. The investigators suggested that "more forceful measures" may be needed. Several of the SUPPORT leaders noted that the efforts to improve end of life care were inhibited by a medical structure that made it very difficult to provide high quality end of life care and argued that improvements were unlikely without a major societal commitment to improve end of life care.

*No Good Deed* by Lewis M. Cohen.

Michael Sigman reviews a new book by Lewis M. Cohen, a palliative care specialist, titled No Good Deed at HuffPo today. Sigman brings up a number of interesting issues, including the common comparison of human euthanasia with pet euthanasia, how death has changed over the past 40 years, the case of Terri Schiavo, and provider refusal laws that allow medical personnel to override the wishes of patients. Here are a couple of clips with my comments:

There are millions of Americans...who don't view overwhelming suffering as a worst case scenario, but see iniquity in actions that take death out of God's hands. Cohen hears out Bobby Schindler Jr., Terri Schiavo's brother, who represents a "sanctity of life coalition" of conservative politicians and religious groups -- and some disability rights activists -- who believe Schiavo was murdered five years ago. To them, only God can make life-or-death decisions, and palliative care should be criminalized. (Schiavo, who had existed in a vegetative state for 15 years, had her life support terminated by court order after five lawsuits and fourteen appeals.)

Then there are those, Cohen himself passionately among them, who don't see death as an evil to be avoided at all costs. They believe each individual has the autonomy to make reasonable end-of-life decisions, and that prosecuting doctors and nurses for anything short of criminal malfeasance is a travesty that will only ruin innocent lives and increase patient suffering.

A quick clarification: I fear Sigman is misrepresenting the current use of the term palliative in the first quoted paragraph. If asked, I don't think Bobby Schindler would oppose alleviation of suffering for patients, which is the purpose of today's palliative care. Palliative treatments are sometimes used in conjunction with curative treatments or rehabilitation. In other words, palliative care does not always mean that recovery is impossible.

Palliative was coined in 1973 by Balfour Mount, a Canadian physician, after visiting Cicely Saunders and her first modern hospice in Britain. Because of stigma surrounding the term "hospice," Balfour sought an alternative term and established a palliative ward inside Royal Victoria Hospital in Canada. So yes, the original meaning of palliative was quite tied to hospice. But only because it took the modern hospice movement, with it's focus on comfort care, to commence an examination by the medical industry of how to alleviate pain. We can't forget that well into the 60s, doctors weren't even discussing diagnoses with patients; they were often making treatment decisions for patients without consultation; it was a paternalistic system that treated illness as something akin to childishness. The hospice movement and the founding of palliative care practices coincided with the civil rights and patient autonomy movements of the 1970s. A lot has happened since the 1970s; but we have a very long way to go.

In fact, the in-hospital hospice ward that I volunteer at has a strange mixture of palliative and hospice patients -- primarily because it is hospice nurses who are best trained to alleviate pain! Our palliative patients go home; our hospice patients don't. That it took the hospice movement -- founded in the 70s -- to pioneer this specialization says quite a bit about our medical industry's historical approach to pain.

Palliative care specialists are now working hard to divorce palliative care from hospice care, as they should. More doctors should be versed in pain and symptom alleviation -- and a recent study, which I posted about yesterday, shows palliative care programs are proliferating.

As medical technology and practices continue to improve, it becomes more and more absurd to insist that everyone suffering the end stages of terminal diseases must be kept alive regardless of their wishes. Even leaving aside what Bobby Schindler calls "the whole autonomy thing," such a system would collapse under its own weight. Before long we'd have millions of centenarians hooked up to ventilators for years at a cost so astronomical we'd have to wrap our brains around the term "quadrillions."

Cohen's calm, catholic approach to the debate over how we die doesn't extend to liars. He not only takes on Sarah Palin's grotesque characterization of counseling in this area as "death panels;" he argues that gravely ill people are generally grateful for just such an opportunity.

On the money: I've long contested that offering patients a choice of treatment -- via informed consent and referrals -- would most likely alleviate or greatly reduce the need for rationing in our health care system. When asked, most patients want to die at home but are ultimately, as Joanne Lynn says, "glide path"-ed into aggressive or futile care. But we don't have the tools to guarantee patient choice yet: advance directives or living wills can be contested; doctors still reside in a culture where end of life care discussions are lengthy and not reimbursed; society tends to blame doctors -- and patients! -- for death, as though if they had only fought harder or been stronger they could live indefinitely. As William Colby, the lawyer for Nancy Cruzan's parents, writes, our laws have yet to catch up with our medical technology and our societal stigmas.

In a sense, this debate is tougher even than the impasse over abortion rights. Relatively few women have abortions, but everyone dies. And virtually no woman wants to have an abortion, but most people do want, and demand, the autonomy to make informed end-of-life decisions.

Ah, well. I too make a lot of associations between women's rights and end of life rights, preferring the rubric patients' rights (because it signifies at least the possibility of a broader and more affective coalition of gay, elder, women's and disabled persons' rights). I advocate for informed consent, non-discriminatory, equal-access health care -- for all! But Sigman gets his facts wrong here and there are a number of nuances to both the abortion and, using the "pro-life" frame, "euthanasia" debates that distinguish them. (As much as many would like to find a "moral" stance against both abortion and assisted suicide -- as would many in Britain -- the opposition to both in the US is primarily from the Religious Right. The Religious Left has lost its teeth and moral authority, alas.)

Sigman's assertion that relatively few women have abortions is flat out wrong. One third of women between the ages of 15 and 44 will have an abortion, primarily because so many experience unplanned pregnancies. Half of all pregnancies are unintended; four in ten end in abortion. But he's right that no woman wants an abortion; women are often without the resources or education to prevent them. I think he's trying to make the point that death comes for us all; unintended pregnancy doesn't. And so we should all be paying even greater attention to end of life rights than we do to abortion. (Which is the same point Tony Perkins made last year in a radio show in which he tried to drum up enthusiasm for the anti-euthanasia fight.)

What Sigman misses is who experiences patients' rights violations. I would never argue that the rights of the majority (all of us who are going to die) are more important than those of say, black women (who experience more unintended pregnancies because of educational and economic hardship). In fact, isn't the value of a society judged by how it treats its minorities? But that we will face a broader national discussion regarding end of life care -- and soon -- is accurate, as baby boomers approach their end years.

With the implementation of health-care reform, the fifth anniversary of Terri Schiavo's death and the forthcoming release of the HBO movie You Don't Know Jack, starring Al Pacino as Dr. Jack Kevorkian, the issues raised by Dr. Cohen in No Good Deed are more front and center than ever.

With this, I couldn't agree more. And if you're reading here, I suspect you do too.

Larry Beresford Hosts Hospice and Palliative Grand Rounds.

You can find his list of the best stories, some of which I've touched on this month, here.

More, Better Hospice Care.

Patrice Villars writes at GeriPal on the ways to improve care for patients in hospice care: make treatments more individualized:

Registered nurses are trained to alleviate suffering through diagnosis and treatment of human responses to actual or potential illness. We are trained to assess and treat based on holistic goals and to view the patient in the context of their defined family. Palliative care and nursing philosophy share a holistic approach to care that encompasses physical, emotional and spiritual concerns of the patient and family unit. It is no small wonder that nurses have been the foundation of community hospice work since its beginnings. Physicians are trained to formulate and treat medical diagnoses. Nurse Practitioners are, well, the middle children. We are nurses who have advanced training in diagnosis and treatment of medical conditions in addition to our foundational training. Our medical training is not as deep or broad as that of physicians. Nurse practitioners often pursue further training to develop an area of expertise.

None of us truly knows what we don’t know. Even the most experienced hospice nurses don’t know how their practice would differ if they had the advanced education and training of a nurse practitioner. Few physicians or physician assistants understand the level of training of RNs or LVNs/LPNs, nor their scope of practice. How could they? They’re not nurses. Only the nurse practitioner holds the dual training and, as such, is the perfect liaison for optimal collaboration between these two disciplines.

Surprisingly, nurse practitioners do not play a pivotal role in most community hospice agencies. Medicare requires that there be a physician medical director. Registered nurses usually function as the hospice case manager for the care of the end stage illness.

Hospice nurses are well trained in using medications to manage symptoms. Hence the array of the (all too often) ‘one size fits all’ order set of PRNs. This makes sense when the nurse is out in the home or on the phone doing her/his very best to assess and treat distressing symptoms at the end of life. It’s pretty difficult to track down the doctor of record, contact her/him, describe the situation, request an order and get it to the patient within a reasonable period of time such that the patient (and family) does not suffer for hours longer. Having pre-signed orders to use PRN can be a life-saver (no pun intended) at times. The downfall is the one size fits all practice. Shortness of breath equals morphine; anxiety equals lorazepam; confusion/agitation equals haldol.

There is continued grumbling among hospices and palliative care folks that patients are often referred too late to hospice care. However, at least in the case of patients with some non-cancer diagnoses, are they? Is our system set up to care for these patients optimally at the end of life? Sadly, I think not.
Happily, there is a relatively easy solution – use nurse practitioners who have advanced training in palliative care and (my bias) gerontology.
What if hospice nurses had easy access to a palliative care NP who had the training to assess and treat medically complex patients at the end of life? What if the hospice nurses had access to someone who understood their practice and could provide the appropriate education and support to improve their practice? What if the NP was available for home visits? Hospice nurses might practice differently. Patients would get better care. And health care providers might not be so reticent to refer their patients a little earlier.

When Are You Dead?

Arri Elsen at ReligionDispatches today looks at the new study (I've written about it here) that shows some persistent vegetative state patients are able to "answer" questions with brain waves. He examines some of the diverse emotional reactions we have to this study and asks what we can do to better understand the definition of death.

But you can get an idea of the complexity of this research’s ethical implications from the reactions of students in two very different courses I happened to be teaching in a single day. In one class—of physicians discussing research ethics—a neurologist was very upset. She thought these research findings would be just as likely to make it even more difficult for her and families to decide what to do with those in a vegetative or near-vegetative state. The families might demand the new test, and then, if there is some intentional brain activity, they might be excited or even more frustrated and upset, depending on how they interpreted the results in their own consciousnesses.

As if confirming this, in my other course—this time a class of undergraduates exploring why we believe the things we do—we happened to be exploring the question of what constitutes a person. We had just read Descartes’ famous treatise (in which he proclaims “I think, therefore I am”) and the neuroscientist Antonio Damasio’s Descartes’ Error. Based on this new MRI research, we asked the question: If your Dad can only communicate through ‘thought MRI’ like patients in this study, would you consider him alive?

A student answered: I’d rather pull the plug, let him die. From personal experience, I’d rather just pull the plug. Tears formed in the student’s eyes, she broke down, and ran from the room.

Does religion help us here? Yes and no, as we heard in the (in)famous Terry [sic] Schiavo case. There are diverse responses to such cases even within particular religions, because the factual and conceptual lines are so blurry. A Catholic or a Jew might say: in Genesis we learn that we are all made in the image of God, we all have an inherent dignity, and to take that away is wrong.

But what constitutes dignity here? another Catholic or Jew (or my student who ran from the room) might ask. A Muslim might say: to kill one person is to kill all people, to help one is to help all—but another might ask: how are we defining life?

One Buddhist says, we must hold on and wait for a miracle—but another responds: we must let this person and her soul go peacefully or else we are negatively impacting its next life.

Once again, science sneaks in on (invades?) the way we live and die—and makes it easier, and harder, to do so.

Blaming Seniors for the High Cost of Health Care.

Eighty percent of seniors say they would like to die at home. Seventy-five percent die in medical facilities.

Despite endless studies that show seniors suffer when they are given futile care, our medical delivery system funnels them into aggressive, excessive treatments that do little or nothing to prolong life and harm their emotional and physical well-being in their last months.

But when seniors are informed of their care options and given a choice of how and where they die - in essence, when they are given the chance to honor their own consciences - the costs of elder care, emotional and physical, decline sharply.

Today's column by David Brooks assigns blame for the high costs of end of life care to the wrong party: seniors. The future of health care, he declares, is a senior movement that tackles "the cause of nonselfishness."

As Ezra Klein rightly notes, it's not seniors' selfishness that is consuming 2/3rds of the Medicare budget, but doctors':

I'm not being flip. I can make a pretty good case for payment reforms that would encourage doctors to provide fewer treatments. I can make a pretty good case that seniors in many states should go to the doctor far less often than they do. But people err when they imply that individuals have the power in the medical relationship. We go to the doctor and we listen to what the doctor says. A sick senior in Minnesota costs a lot less than a sick senior in Florida, but that's not because the Minnesotan is refusing treatments. It's because his doctor is providing fewer of them. If you want to talk about a group with real power to change medical spending in this country, talk about doctors.

Take Klein's Minnesotan and let's call him Charlie. Charlie's been through numerous chemotherapies and treatments over the past 5 years for cancer. But after a long, brave fight, his doctor knows that Charlie's got only about 5 months to live. Rather than discuss the exhausted options, the 5 month prognosis, a living will and plans for death, Charlie's preferred site of death, and other end of life issues, Charlie's doctor instead gives him the hope that a new, very expensive drug may extend his life. Charlie is kept in the hospital, Medicare pays for the experimental drug that is proven to extend life a few months in 5 to 10% of patients, Charlie's family visits daily with the hope that he will recover. Seven weeks after starting the new drug, Charlie lapses into a coma; two weeks later, he dies.

Doctors have traditionally shied away from discussing end of life care with patients for a host of reasons including: lack of training in how to broach the subject; the lengthy discussions that prepare a patient for death are often not reimbursed; and doctors frequently view the inability to cure a patient as a failure. As a result, dying patients are seldom accurately informed of their prognosis nor given the information and resources necessary to prepare. And patients fail to initiate these conversations because they look to their doctor for information and guidance. If the doctor can't broach the subject of death, how should the patient?

Yet taking on the failings of an ill-prepared medical industry is much less popular than blaming seniors for their selfishness. We look at medical professionals as authorities, paternalistic experts whose practices shouldn't be challenged. And we have come to view hospice or palliative care - options that work to keep a dying patient as comfortable as possible in a non-hospital facility or their home - as giving up on life.

If asked, Charlie may well have said that he wanted every possible treatment, no matter how long the odds were for his survival. But he may also have said that after five years of struggle against an incurable disease, he was ready to go home, to make his informed last decisions, to prepare for death, to die with his family surrounding him. Either way, it would have been Charlie's choice. Instead, his doctor "sheltered" him from such decision-making. And in the course of doing so, deprived him of a peaceful home death.

Klein's right. Until doctors - who have the ability to direct the nature of our last months and to inform us of what is coming and what our options are - address end of life care with patients, seniors will continue to die in ways and in places that they would never have chosen. At a cost that none of us should bear.

Opioid Use for Elder, Chronic Pain Relief.

Don't miss the fantastic discussions at Pallimed and GeriPal regarding the use of opioids for relief of pain in the elderly. Last week's study is dissected by the amazing commenters and you'll have a better understanding of the challenges faced when working to relieve pain.

Here's a clip from GeriPal's article to bring you up to speed:

As noted on the Pallimed blog, a study published last week in Annals of Internal Medicine reports on adverse events associated with the prescription of opiates for chronic non-cancer pain.

In brief: they studied 9940 HMO patients (mean age 54) who received 3 or more opioid prescriptions within 90 days for chronic noncancer pain between 1997 and 2005. They used ICD codes with subsesquent chart review to identify "opioid-related overdoses", and found 51 events, of which 6 were fatal. After stratifying by categories of opiate exposure, they estimated that annual overdose rates were 0.2%, 0.7%, and 1.8% among patients receiving less than 20 mg, 50 to 99 mg, and more than 100 mg of opioids per day, respectively. (For more journal-club style details and analysis, check out the Pallimed post, which is good reading for those with a little more time and interest.)

I'll confess that when this article caught my eye, one of my first thoughts was "Argh! Now it will be even HARDER for me to persuade my elderly patients to try a little low-dose opiate for their severe arthritis, when all else has failed to control their pain."

Yes, it's true. I have some of my arthritic elders taking a little daily opiate for their pain: it allows them to walk around a little more and maintain their function, or so I tell myself.

But what do the rest of you think? In particular I'm curious to know what the primary care clinicians among you prefer to use for chronic noncancer pain in frail elders. And how easy do you find it to address the patient's (or often, the family's) worries about the risk of addiction or overdose? Will this latest study change your practice?

And here's the link to Pallimed. Don't miss the comments at either section.

The Physical and Emotional Costs of Futile Care.

Yesterday the LA Times ran a story on futile care, the treatments and medications given to dying patients that do nothing to prolong their lives or control their suffering. Here's a clip:

Every year, billions of dollars are spent in the United States to treat terminally ill patients during their final year of life. Tests, procedures and hospitalizations do little to prolong or improve the quality of that life, research suggests, and in fact may make the final days of terminal illness more emotionally upsetting for patients and their families.

The Centers for Medicare and Medicaid Services estimate that 5% of the beneficiaries who die each year take up 30% of the $446-billion annual Medicare budget. About 80% of that money is spent during the final month, on mechanical ventilators, resuscitation and other aggressive life-sustaining care. Often, the aggressive steps taken to save someone's life are futile. A 2009 study published in the New England Journal of Medicine found that just 18% of adults older than 65 who received cardiopulmonary resuscitation in the hospital survived the procedure long enough to be discharged. In addition, researchers found the procedure in some cases prolonged patients' suffering.

"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way," says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. "In fact, we found the opposite to be true. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."

That study showed that cancer patients who planned in advance with their doctors about end-of-life treatment had much lower healthcare costs in their final week of life than those who didn't. What's more, the higher the cost of medical care, they found, the worse the patient's quality of life was in the final week of life.

How is it that we've found ourselves in a situation where dying patients are given costly, emotionally and physically harmful treatment they really don't want?

* from the article, Medicare doesn't pay for hospice right now (and I'll have to double-check that because I'm not certain it's true - if it is, it's absolutely shocking) "Under current guidelines, once a recipient enters hospice care, Medicare no longer pays for services to treat the terminal illness that put them there."

*doctors are not properly trained to discuss end of life options and if they are willing to discuss these things with their patients, they're not paid for the time-consuming consultation

*doctors don't want to discuss end of life care because they are forced to address what has erroneously but traditionally been considered a "failure" to cure the disease

*patients look to their doctors for direction regarding end of life choices but they don't receive that leadership

*patient resources regarding end of life care are messy, hard to find, difficult to understand, often not concise. patients approach the end of lives without ever knowing there are alternatives to hospital rooms and tubes.

*the climate in society is such that a patient is considered weak or having "given up" if they don't pursue "all medical options"

*state and federal laws do little or nothing to protect patients' right to informed consent because the state has shied away from regulating health care, hospitals, or doctors' practice

*the church, particularly Fundamentalist and Catholic, has a theological interest in controlling end of life care. they have worked for decades to conflate "euthanasia" with other meaningful, legal, and pain-reducing practices. As a result, devout believers tend to receive more futile care at the end of life than others

*a conspiratorial myth has risen about hospice and palliative care - that these organizations are there to kill you, not maintain your quality of life until death. I have seen countless mis-informed and damaging blogs and articles about the horrors of hospice and palliative care. Our seniors have been scared into thinking that nothing short of a doctor at a hospital will do the best for them, will not give up on them

*death is taboo, no one wants to plan for their death and there is little incentive in society to encourage rational, science-based, medically sound discussions of what patient's want, where they want to die, what treatments they desire

As baby-boomers grey, we face a crisis of end of life care in this country. Our delivery system will be forced to reckon with futile care in a way that it has been able to avoid in the past - we simply can't afford to treat patients with aggressive but ineffective measures. Nor why should we when patients most often wish to die in peace.