palliative care

Shannon Brownlee's back at TIME Ideas with a new op-ed yesterday: this one about the article we mentioned last month, called How Doctors Die. Brownlee adds more context to the first commentary, by retired physician Ken Murray, with gut-wrenching descriptions of precisely why doctors tend to avoid intense, invasive care at the end of life:

"Doctors also know that undergoing heroic measures is a lousy way to die. They’ve seen what it’s like for an elderly patient to end up in the ICU, hooked up to machines, often semiparalyzed, in pain, lying on what philosopher Sidney Hook called “mattress graves” during his own terminal illness. At a recent meeting I attended, one emergency physician tearfully admitted she didn’t think she could stand to hear the sound of ribs breaking as she perform CPR on yet another elderly patient who almost certainly would not survive."

Brownlee also mentions Angelo Volandes, a physician who's working on a series of videos illustrating what it actually means to go through various heroic efforts at extending life. We think such an effort could be incredibly valuable to patients, and will help prevent a lot of unnecessary suffering, and we applaud the project.

USC med school professor Ken Murray has an article over at Zocalo Public Square outlining the difference between how most people die and how doctors die. As he says, "It's not like the rest of us, but it should be."

Doctors are deeply familiar with how people usually die, and the incredible suffering that the medical system sometimes imposes on them. Because they've seen a lot more medically-induced suffering, and are more familiar with the limits of medicine in extending life, doctors are much more likely to die at home, with little medical intervention. That's a much better match with most people's stated preferences--many more Americans say they'd like to die at home (as opposed to in a hospital) than actually do.

Murray's closing point contradicts Dylan Thomas's famous admonition, but it gets at the core insight of his years in medicine. Maybe we can all learn from it:

"If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors."

In the annals of outrageous and damaging demagoguery, it's hard to beat the "death panel."  Thankfully, there are sane, responsible people participating in the end-of-life discussion as well. The Engage with Grace movement offers a simple, one-slide PowerPoint presentation that lays out the five questions people should ask themselves about end-of-life care. The movement asks health policy and health care professionals to add the slide at the end of their powerpoint presentations, and asks individuals to share the questions with their friends and family.

The site also offers discussion guides and resources for helping people answer their questions and understand the issues they have to confront, and conversation-starters for people who want to talk to their loved ones about plans and desires. Their goal is simple, but admirable: to spark a conversation about end-of-life care, outside of health policy circles; to get people talking about what they want, what they value, and how to die, as Engage with Grace puts it, with purpose. 

A personal note: These questions are hard. I've spent a reasonable amount of time thinking about end-of-life issues, both from a systemic perspective and in asking what I would want for myself. The issue was a large part of what attracted me to the field of health policy. Even having thought about these issues, though, I can't answer all of the questions on the slide to my satisfaction, and I can't answer them for my family members. I do plan to send this on to them, and I hope I'll have a better idea of their wishes -- and mine -- soon. I strongly encourage everyone, inside and outside of health policy, to take a moment and consider the questions Engage with Grace poses, as they apply to your own life. After all, if we can't talk to our families and friends about these issues, have we got a payer of ever having a serious national conversation?

One last thought: it's easy to avoid having the conversation, but impossible to avoid making decisions. The only choice is whether to make them consciously, and whether to be prepared.

Many thanks to Don Taylor at The Incidental Economist for the tip.

Over at NPR’s Planet Money blog, Jacob Goldstein has commented on Columbia professor Barron Lerner's New York Times op-ed about the trouble with unproven, risky cancer treatments. The op-ed calls out heated chemotherapy, an intense treatment for colorectal and ovarian cancer, as dangerous and ineffective. More importantly, he places heated chemotherapy in its place relative to other radical, painful and ineffective treatments like radical and super-radical masectomy, fore- and hindquarter amputation, and very-high-dose chemotherapy. Those treatments all had a moment of popularity, but none was demonstrably more effective than less invasive and dangerous standard treatment options. Rather than actually benefiting the patient, such radical treatments are the illusion of action, serving only to provide false hope while denying patients palliative care that might actually improve their quality of life.

Late last week, The Wall Street Journal published an op-ed by David B. Rivkin Jr. and Elizabeth Price Foley entitled, “‘Death Panels’ Come Back to Life,” ostensibly concerned with the FDA’s withdrawal of support for a drug known as Avastin for use in cases of late-stage breast cancer.  Bad enough that the authors misrepresent what the FDA said.  Even worse was their effort to twist various arguments concerning the FDA’s ability to protect the public from harmful drugs into an extension of the shouting match over death panels and the Affordable Care Act. 

"Earlier this month, the Food and Drug Administration banned doctors from prescribing Avastin, a potent but costly drug, to patients with advanced-stage breast cancer. According to the FDA, the drug doesn't offer "a sufficient benefit in slowing disease progression to outweigh the significant risk to patients." Yet in some clinical trials Avastin has halted the spread of patients' cancer for months, providing respite to women and their families wracked by physical and psychological pain."

When Avastin was originally approved in 2008, it was given an “accelerated approval” to treat late-stage breast cancer after a single clinical trial found it had the potential to stop tumor growth for a few months, prolonging what is known as "progression-free survival" during which tumors are not getting bigger. This is not the same as "getting better,” and the trial never showed that the drug could extend a patient’s life.  Part of the provisional approval was the requirement that the manufacturer engage in additional clinical trials to confirm the drug’s efficacy.  Two follow-up trials were carried out, and neither confirmed the initial gains in delaying tumor progression.

Don't forget to join us today for the event Moving Beyond Death Panels, where a distinguished panel of experts will discuss the implications of the most recent Dartmouth Atlas, Quality of End-of-Life Cancer Care for Medicare Beneficiaries Regional and Hospital-Specific Analyses. This study reinforces previous findings that the end-of-life care patients receive often falls short of their desires and wishes, and those of their families. All health care, including -- if not especially -- that which comes at the end of life, must be responsive to patients' needs and respectful to their personal values and choices.

To RSVP or see a full list of speakers, click here. If you can't make it in person, be sure to check out our live webcast or follow along on our Twitter feed, the NewHealthDialog. We'll be live-tweeting under the hashtag #nafevents. We hope to see you there!

The Health Policy Program invites you to join us at an event tomorrow from 12 to 2pm to discuss the controversial issue of end-of-life care, and the implications it holds for patients, families, providers and yes -- even those who pay for the care. While last year's contentious health reform debate painted the issue in harsh and often equivocal terms, the choices around end-of-life care are complex and deeply personal and are not a simple contrast between cure vs. care.

At the event, Moving Beyond Death Panels, a distinguished panel of experts will discuss the implications of the most recent Dartmouth Atlas, "Quality of End-of-Life Cancer Care for Medicare Beneficiaries Regional and Hospital-Specific Analyses." This study reinforces previous findings that the end-of-life care patients receive often falls short of their desires and wishes, and those of their families. All health care, including -- if not especially -- that which comes at the end of life, must be responsive to patients' needs and respectful to their personal values.

Lunch will be available at noon. To RSVP or see a full list of speakers, click here. If you can't make it in person, be sure to follow along on our Twitter account, NewHealthDialog. We'll be live-tweeting under the hashtag #nafevents. We hope to see you there!

Dyspnea. Nausea. Dementia. The deep relentless pain of metastatic cancer.

Young physicians entering emergency medicine may envision spending their careers mending trauma victims and restarting stuttering hearts but soon find that they spend as much or more time treating chronically ill patients who cycle in and out of the emergency department (ED) with high symptom burdens and a grim trajectory that no one has stepped up to explain.

Yesterday we brought you the highlights of the Dartmouth Atlas study on the end of life treatment experiences of Medicare patients with advanced cancer. Lots of last minute hospitalization and rescue care,  hospice was too little and too late, and the significant regional variation that Dartmouth has been documenting in excruciating detail for 20 years.

We promised more when I finished a longer piece. Here's the link to that piece, "For Dying Cancer Patients, Geography is Destiny." Here is some of what I reported:

We are giving an awful lot of very aggressive care to patients who are pretty close to death, with advanced and advancing metastatic cancer. As health care consultant Rosemary Gibson said, "We still don’t know when to stop."

The Dartmouth Atlas has released a report on the wide variation in cancer care at the end of life for Medicare patients. Lots of variation in ICU care and hospitalization -- in some regions, more than a third of the patients with severe, advanced cancer spent their final days in the hospital, some with ventilators, feeding tubes or other intensive life support. The following Dartmouth Atlas graph, for example, shows the percent of cancer patients who died in a hospital across the United States between 2003 and 2007 -- averaging about 29 percent. That's not how the vast majority of Americans say they want to die -- most of those with serious illness say they would prefer to be at home with their families.