end of life

A One-On-One with Extremis’ Dr. Jessica Zitter

In September 2016, Netflix released an original documentary, “Extremis”; a 24-minute account of the end of life experience in an ICU setting. The AAHPM member featured in the documentary, Jessica Zitter, MD, recounts her journey to becoming a hospice and palliative medicine physician and her idea for the documentary.

“In 2009, I realized the need for a movie addressing the state of dying in the Intensive Care Unit.  I had just seen “The Waiting Room,” a documentary which depicted the humanity and suffering of patients in the ER of Highland Hospital, the county hospital for Oakland, California.  I had just started working there a few months earlier.  I was blown away by the film’s rich visuals and gripping stories.  I wanted to bring that same lens to the issue of medical decision-making in the Intensive Care Unit. In this high-stakes environment, dying patients are often put on what I call the “End of life Conveyor Belt:” lined up for default high-technology life-prolongation, often without their consent or understanding.

It was a topic I couldn’t stop thinking about — although it hadn’t started out that way.  When I was a young attending in the ICU at University Hospital in Newark New Jersey, I was all about life-prolongation, always seeking that high-technology heroic rescue.  But an awareness was dawning that something wasn’t quite right.  I just didn’t know exactly what.  Then in 2003 the burgeoning Palliative Care movement found me, and rescued me from my growing moral distress.  By a stroke of luck, I happened to work at the University of Medicine and Dentistry of New Jersey (now called New Jersey Medical School), one of only four institutions to receive a grant from the Robert Wood Johnson Foundation to improve communication in ICUs.  These grants were part of RWJ’s larger initiative called Promoting Excellence in End of Life Care, run by our own Dr. Ira Byock. They were awarded in March 2003, and I was hired at UMDNJ in May of the same year.

I knew nothing about this grant until I was introduced to the members of the “family support team,” the precursor to what would become the Palliative Care team years later.  I saw them roaming the rooms of our ICU, clipboards in hand, asking patients questions I would never have thought to ask: did they understand what was going on, what was important to them, were they in pain?  Although I was initially resistant to the team’s remonstrations – “Why are you putting that catheter into a dying patient without telling her family she is dying?”- I quickly realized they were raising critical issues. Before I knew it, I was a convert. Under the guidance of Pat, the advance practice nurse who led the team, I began to practice more patient-centered care, and later passed my Palliative Care boards.  Over the ensuing years, I’ve become convinced that the Palliative Care toolbox is absolutely crucial to patient-centered practice in the ICU.

After seeing “The Waiting Room” I approached the director, Peter Nicks, and asked him if he would be willing to put a face on the suffering of patients in the ICU.  There were so many patients receiving non-beneficial and even harmful treatment, I told him. Pete, busy on another project, introduced me to Dan Krauss, who went on to direct “Extremis.” Dan, although an outsider to medical culture, was able to bring incredible sensitivity and insight to this very complex world.


I’m thrilled, and a little astonished, at the response to the film.  The initial Netflix trailer went viral, garnering an unprecedented 5.5 million views in the first three days. I believe that this indicates the potential for change in both the lay and medical communities. I am in the process of creating a teaching curriculum for medical professionals and trainees which will focus on some problematic areas within our current medical culture, particularly in the ICU, and begin to explore structural solutions for change. I hope soon to be able to provide this curriculum to the many medical schools and communities contacting me with interest in using the film in a teaching capacity.

I’ve been spending the last year working hard on a book about these issues, Extreme Measures.  The book will be published by Penguin-Random House on February 21, the day before the AAHPM conference in Phoenix.  My hope is that both the book and the movie will serve to support this movement and help show us all the need for change in the way we approach death and dying—both the lay public and the medical professionals who, like me, may have been blinded by their training.”

AAHPM will hold a book signing with Dr. Jessica Zitter at the Annual Assembly on Thursday, February 23 at 5:30pm in the Exhibit Hall. Copies of her book “Extreme Measures; Finding a Better Path to the End of Life” will be sold at the AAHPM Resource Center at Assembly.

Organizational Advocacy Key to Promoting Advance Care Planning… Now it’s Time for Individuals to Make Their Voices Heard!

By Gregg VandeKieft, MD MA FAAFP FAAHPM
Co-chair, AAHPM Public Policy Committee

The following is part of a three-post progressive blog about advance care planning, prompted by the Centers for Medicare & Medicaid (CMS) decision not to pay for the new “complex” advance care planning codes in this year’s Medicare Physician Fee Schedule. Now is the time to tell CMS why you support reimbursement for these important services! The agency is accepting public comments through Dec. 30 —it’s easy to submit comments online!

Please also see AAHPM Public Policy Committee co-chair Phil Rodgers’ Pallimed post for detailed background on efforts to advance the new codes via the AMA RUC and with CMS, and read AAHPM State Policy Issues Working Group Chair Paul Tatum’s GeriPal post where he makes the case that it’s time for advance care planning to become routine for patients with serious illness.

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A common complaint in emergency departments and ICUs goes something like: “Why didn’t anyone ever talk with this patient about how serious their illness is? Is this really what they would have wanted?” Primary care providers and subspecialists who commonly deal with serious illness cite time constraints or fear that frank discussion of prognosis will “take away hope” as barriers. The unfortunate result is that things take a turn for the worse before the patient and their family have seriously considered or prepared for that possibility, and physicians with whom they have no prior relationship end up having “the talk” in the ED or after admission to the hospital.

Efforts to promote effective advance care planning (ACP) range from coordinated community-focused efforts, like the Gunderson Clinic’s Respecting Choices program to grassroots efforts like The Conversation Project. But what have medical specialty societies done to promote ACP? I’m proud to say that our Academy has been a leader on this front, particularly in terms of public policy advocacy.

For years, AAHPM has worked to advance federal legislation that would promote ACP. After his proposal to reimburse physicians for time spent in conversation about goals of care was cut from the draft health care reform bill amid cries of “death panels,” U.S. Rep. Earl Blumenauer (D-OR-3) invited key stakeholders – including AAHPM − to the table to develop comprehensive legislation on the matter. The result is the Personalize Your Care Act.

This legislation would provide coverage under Medicare and Medicaid for voluntary advance care planning consultations, make grants available for communities to develop programs to support “physician orders for life-sustaining treatment” to promote patient autonomy across the care continuum, require advance care planning standards for electronic health records, and allow portability of advance directives across states. The bill, which is cosponsored by U.S. Rep. Phil Roe, MD (R-TN-1), had bipartisan support in the House this past Congress, but it will need to be reintroduced next year. (Congressmen Blumenauer and Roe have met with Academy leaders for small-group dialogues during our annual Capitol Hill Days.)

At the same time, AAHPM has engaged in regulatory advocacy on the matter. The Academy joined with other medical society stakeholders to advocate for new CPT codes (included as 99497 & 99498 for 2015) for more complex advance care planning. AAHPM surveyed its members to contribute to findings presented to the AMA/Specialty Society Relative Value Scale Update Committee (RUC) which then developed and relayed relative value recommendations for the codes to CMS. (AAHPM was invited to survey under the American Geriatrics Society (AGS), which has a permanent seat on the RUC.) The Academy’s RUC advisor, Phil Rodgers, MD FAAHPM, has worked with representatives from AGS and other medical societies to strategize about how best to influence CMS staff and officials, and he participated in a meeting with CMS staff that stakeholder societies requested to explain why ACP is good medicine and urge CMS to reimburse these important services.

It’s been great to see other organizations also work to promote ACP. The American Medical Association’s (AMA) Code of Medical Ethics includes a section devoted to advance care planning, adapted from a more comprehensive report on ACP by the AMA’s Council on Ethical and Judicial Affairs. The American Society of Clinical Oncology (ASCO) has published a booklet on ACP, accessible in English and Spanish along with other materials, from a page dedicated to ACP on ASCO’s Cancer.Net web site. The American Geriatrics Society provides links to Prepare for Your Care, an on-line ACP tool for patients and families with excellent educational videos. A Spanish language version was recently added.

The American Academy of Family Physicians (AAFP) passed a resolution at its 2014 Congress of Delegates promoting the implementation of centralized registries for advance directives, durable power of attorney for health care, physician orders for scope of treatment (POLST), and do not resuscitate orders. The AAFP also has a position statement on “Ethics and Advance Planning for End-of-Life Care” that strongly encourages ACP and the completion of advance directives “as a part of routine outpatient health maintenance.”

But, if all these societies’ extensive efforts have yet to bring about the desired level of change, are further initiatives likely to be productive? Data from the “Respecting Choices” project confirm that communities can be positively affected by well-designed collaborative programs. Moreover, those of us practicing as palliative care specialists have an opportunity and responsibility to promote generalist palliative care skills among our colleagues.

Of course, with comments now being accepted on the 2015 Medicare Physician Fee Schedule Interim Final Rule – where CMS indicated it would not pay for the new CPT codes for advance care planning at this time (CMS states other codes can already be used for reporting and payment) – we, as individuals, have a unique and very valuable opportunity to weigh in with policymakers to explain why ACP is a vital medical service and how Medicare reimbursement not only serves to promote these important services for beneficiaries but, without separate codes, we are unable to track them to look at utilization, outcomes, and which specialties are performing ACP services and where.

I urge all my Academy colleagues – and everyone who cares about sound health policy – to take just a few minutes to submit comments to CMS by Dec. 30.

Phil Rodgers, who co-chairs the Academy’s Public Policy Committee with me, provides these tips for doing so:

  • Explain why you think it’s important to pay for ACP services through a specific mechanism. CMS has suggested that it believes Medicare already pays for ACP services through the Evaluation and Management (E/M) and extended service codes. Tell them about the unique value of advance care planning, and how it is ‘separately and identifiably’ necessary in addition to all other services (medical therapy, symptom management, etc.).
  • Be specific, be yourself, and write about what you know. It’s OK to reference the literature about ACP services and palliative care, the IOM report, the importance of tracking the frequency ACP is performed, the needs of an older and sicker society etc., but it’s more powerful to speak from personal experience. Tell patient stories that illuminate a connection between high quality advance care planning and better care for your patients. Every HPM professional I know has dozens if not hundreds such stories. Now is the time to tell them.

President Crossno’s Letter to American Medical News

Letter to American Medical News

January 6, 2012

Re: Handful of States Promise Physicians Online Access to Advance Directives, posted January 3, 2012 on amednews.com http://bit.ly/vFKMvx

When very sick patients are unable to express their wishes toward the end of life, nothing is more heartbreaking for doctors and loved ones than not knowing what those wishes are. It’s up to grieving and frightened family members to try to recall a past conversation, or remember whether there’s an advance directive, and if so, how to put their hands on it. Online registry programs for advance directives that give doctors access to this information would help ensure that we meet our patients’ wishes and that we don’t leave family members always questioning the decisions they were forced to make.

Patients need to hear from their doctors the importance of advance directives. They need to know that an advance directive can be changed, and that it can direct doctors to stop aggressive life-saving treatments, or continue them. Most important, an advance directive needs to be readily accessible when you need it. The American Academy of Hospice and Palliative Medicine has information on advance directives at www.aahpm.org and www.PalliativeDoctors.org

Ronald J. Crossno, MD CMD FAAFP FAAHPM

President, American Academy of Hospice and Palliative Medicine

What Is Palliative Care?

by Ruth Mugalian, Public Communications Inc.

Read the full article about defining palliative care in the Winter issue of The Quarterly.

When I talk about my work with hospice and palliative medicine specialists and why I enjoy it, I usually say something like this: “They’re doctors who take care of very sick patients. They relieve their symptoms and make them feel better.” It should be a communications professional’s dream. It’s simple, understandable and positive. There’s no esoteric medical jargon or complex technical language to translate into layman’s terms.

And yet, that simple, positive description doesn’t quite capture it.

Describing what hospice and palliative medicine specialists do is an evolving challenge, as evidenced by the many different ways the doctors explain their work. Unlike many other medical specialties, there’s no simple one- or two-word description, like “heart surgeon” or “cancer specialist.” “They relieve symptoms” is far too narrow, but also too broad. Don’t most doctors relieve symptoms? And, what about all the other care they provide: the help with decision making and navigating the system, the coordination of care, the support for families?

Just summarizing the breadth of care is challenging enough, but of course, there’s another challenge. The heart surgeon fixes the heart. The cancer specialist attacks the cancer. HPM doctors don’t cure. They provide the care that helps the surgeon and the oncologist cure, and that helps the patient endure the cure.

And sometimes there is no cure. That’s when the HPM’s role takes on special meaning and ironically and frustratingly gets twisted into something negative: they withhold care, give up on the patient, hasten death. Of course, the opposite is true. They stay on the job when others have no more to offer. They continue, or begin, providing care when others have stopped. They’re passionate about controlling pain. Snappy phrases are tempting: “They don’t cure, they care.” “They never stop caring,” “Helping you endure, with or without a cure.” They’re simple, understandable and positive, and they don’t quite capture it.

Pacific Northwest Ahead of the Curve in End-of-Life Care. Or Is It?

by Joanna Fief

I’ve been hearing about the need for improved end-of-life care since I was a kid. My mom was a hospice nurse for many years and always talked about the importance of broader and earlier access to palliative care for patients and their families.

I never dreamed my work would overlap with hers, but for the past few years I’ve been working with The Regence Foundation, a grantmaking organization in the Pacific Northwest focused on increasing awareness and improving access to palliative care. Mom is proud of me, and I feel very lucky to work in a part of the country that is so ahead of the curve when it comes to end-of-life care.

Or is it?

Last month, The Regence Foundation partnered with National Journal, a media organization in Washington D.C., to poll people in the Pacific Northwest on their attitudes toward end-of-life care and how they compare with the rest of the country.

My gut feeling was confirmed. People here are generally more aware of and open to discussing end-of-life care options than other Americans. However, the poll also showed that, just like the rest of the nation, many still aren’t familiar with the term “palliative care.” Plus, about half said that information about palliative care is “available, but only if you know where to look or who to ask.” The Regence Foundation wants to change that.

For me, the key takeaway is that, regardless of geography, when people know what palliative care is, they want it, and I love that part of my job is to help them know what it is and how to access it.

Joanna Fief works at The Regence Group, a total health solutions company. The company’s foundation is called The Regence Foundation, which is working to improve access to palliative care.