Hospice and Palliative Medicine
In his new book, Dr. Byock shares his refined, crisp, socially and politically attractive call to action for people of our country to join in a thoughtful dialogue about how we all care for each through the end of life. The Best Care Possible follows The Four Things That Matter Most and Dying Well as a foundational contribution to Palliative Care and the American culture. Ira reframes the principles of palliative care in four simple words, The Best Care Possible. I spoke with my mentor about his new book.
Cory: I know you have been touring with your book, doing radio, television and press interviews. What is the dialogue you are hoping to incite?
Ira: The book is not the thing. I wrote the book to provoke discussion in the professional and general public about how we care for each other through the end of life. It is not from ill intention that people are dying badly, but rather because our culture doesn’t have a good sense of what good care is. Culturally we have to grow the rest of the way up. I want to feed the cultural imagination about what is possible through the end of life.
Cory:I want to ask a question that you likely haven’t been asked. As you taught me to state the obvious with patients and families, such as, “I want to make sure you receive the best care possible.” I can see your new book as a reframing of the principles of palliative care in four simple words, The Best Care Possible. I am interested to know how you would call the Academy to action to influence the national dialogue?
Ira: To the Academy’s members, I have to say that time is up. We have been talking for years about what needs to happen. We have been worried about what happens when the baby boomers approach the end of life. Now they have started to show up in the obituaries; 78 million of us. In medicine we have also created chronic illness with many people living with multiple serious illnesses.
I want the field to at least struggle with what is unfolding. Despite all the progress in hospice and palliative care, we are not ready. Look at all the technological advances in medicine, including the creation of the chronically critically ill patients….we are not ready. We have to rise to an unprecedented challenge to preserve western civilizations’ values of caring for each other and preserving the inherent dignity of each and every person as they approach the end of life.
The Academy has a leadership role in helping the culture grow the rest of the way up. There has to be a social and cultural transformation. We have to reframe illness and dying and the care throughout the end of life and reclaim caregiving through the end of life as a profoundly personal and only partially medical experience.
The Academy has to affirm the founding principles of the specialty. Physician-assisted suicide is one case in point. We can’t be neutral about the discipline’s stance. Physician assisted suicide and euthanasia are not the role of palliative care specialists. If you just think about it; we palliative care specialists are all pro-life. Preserving life is at the foundation of western civilization. That is why we have fire departments and police, to serve and protect. We have sanitation and clean water; these are pro-life parts of our society. To somehow allow a political movement to take that language from us and give it to those activists is far more power than they deserve. The Academy needs to start with affirming the principles of the discipline, the inherent dignity of people, the fact that we are pro-life, and that physician-assisted suicide is not part of medical practice.
The cultural transformation has to include being honest about preserving life and being honest about medical possibilities towards the end of life. As a culture we must recognize that we are mortal.
Branding what we do as providing “the best care possible” is consistent with enhancing quality of life, but has “social marketing” advantages. The boomers have always wanted the best. It is a simple message that works really well.
Cory: How is the Academy adopting this?
Ira: It is good language and messaging. In meeting new patients, I often say, “I want to give you the best care possible” as a way of framing the clinical relationship. The term is a vessel in which to pour individualized meaning. But the term is also effective in a social marketing. Giving and receiving “the best care” is meaningful individually and to the macro society. At all levels, palliative care is a way of delivering that goal.
After my conversation with Ira, I am doubly convinced that the best care possible isn’t a slogan or a sound bite. It is authentic. It cuts to the core of palliative care as we match medical possibilities to patient’s preferences and goals while managing symptoms, coordinating care with other medical providers, improving quality of life, providing a space for healing fractured relationships, fostering human development, honoring spiritual traditions and values, and baring witness to the bare and tender emotions of serious illness. Palliative care is the specialty that overflows the vessel of The Best Care Possible through the end of life. I thank Ira for his wisdom, vision and mentorship.
Cory Ingram, M.D.
Assistant Professor of Family and Palliative Medicine
Mayo Clinic, College of Medicine
Medical Director of Palliative Care
Chair of the Palliative Medicine Specialty Council
Mayo Clinic Health System
Trust psychiatrists to give an afternoon session that makes you completely forget about that nap you were craving! “Delirium: A Study of Difficult Cases” consisted of 3 vignettes about various forms of delirium, complete with very realistic role playing and chock full of wisdom from palliative care psychiatrists.
First there was a case of reversible hyperactive delirium. We were reminded that just about anything could be the culprit behind it, including common HPM meds like opioids and benzodiazepines, minor infections, metabolic derangements, and overstimulating environments.
How to treat the agitation in reversible delirium? First try to reduce stimulation and create a soothing environment. Can you eliminate any unnecessary meds? AVOID benzos! Use 1st generation antipsychotics such as haloperidol or chlorpromazine (more sedating than haloperidol), and dose the way you would dose pain medications.
What about irreversible delirium? This is the kind that occurs during the dying process, so a good clue that it’s not reversible is that there will be physical signs of dying. In this case, you can use antipsychotics, but you could also use benzos like lorazepam or midazolam. Remember that the goal is to reduce suffering by reducing the agitation of delirium — this is NOT palliative sedation, this is medical managment of a medical symptom.
Sometime benzos won’t be effective, and in those rare cases you could try propofol or phenobarbital. The key point is to treat agitation like a breakthrough symptom.
The final vignette illustrated a case of mixed delirium in pediatric palliative care (complete with role playing where the parent was as much the patient as the kid). Yes, delirium happens in kids too! This is a sneakier form of delirium (and can happen in adults too) that presents with waxing/waning symptoms. The gist is that you treat kids the same as adults (though with lower doses) — haloperidol and risperdal (both antipsychotics) are effective and safe in kids and infants.
I left with the understanding that delirium is a form of suffering, and as patients who come out of it later say, is a terrifying and disorienting experience. Treat it proactively and don’t hesitate to consult psychiatry for tough cases!
Erin Zahradnik, MD, PGY-3 Yale University Dept of Psychiatry
To improve quality, whom we measure is as important as what.
by Joe Rotella, MD, MBA, FAAHPM
The growing awareness in America that our healthcare system is unaffordable and fails to deliver consistent quality has led us to healthcare reform, mandatory quality reporting, pay-for-performance, and Accountable Care Organizations (ACOs). We need good measures of quality healthcare so we can direct our limited resources where they provide the most value. We would do well to pay particular attention to the quality of care near the end of life. As Ellen Goodman noted in her recent Harvard Business Review article “Die the Way You Want To”, 25% of Medicare expenditures are incurred by the 5% who are in their last year of life. Surely we can deliver more value by increasing quality of life and decreasing futile medical interventions for these patients.
It makes sense that we should measure quality in order to improve it, but figuring out exactly how can be a real devil. We often focus on what we should measure—the numerator, but whom—the denominator—is just as important. Working on the AAHPM Quality and Practice Standards Task Force this past year has been an eye-opening experience for me. Wading through ponderous technical documents describing a host of proposed national quality measures, I was struck with how hard it is to design a really good one. The National Quality Forum (NQF) recently recommended a set of quality measures for hospice and palliative care. The NQF only recommends measures with well-defined methodologies validated for the specific populations under consideration. Many employ a narrow denominator, e.g. hospice patients rather than dying patients. It’s a good start, but I hope policymakers and payers will be careful in how they incorporate them into mandatory quality reporting systems. Measuring only hospice patients in order to improve the quality of end-of-life care is like searching for a lost dollar bill only where the light is good. The real payoff may be lurking in that dark corner.
For example, the best set of quality measures we have for end-of-life care so far, the Family Evaluation of Hospice Care (FEHC), has only been validated for hospice patients. When we apply the FEHC to hospices, we can compare the quality of Hospice A with that of Hospice B. That might be good enough if most dying patients received hospice care, but the National Hospice and Palliative Care Organization reports in its 2011 Facts and Figures that only 42% of those who died in 2010 were enrolled in hospice. So what about the quality of end-of-life care for the majority of patients who die in hospitals, skilled nursing facilities and homes without the benefit of hospice care? How can we measure that?
Current and proposed mandatory quality reporting programs perpetuate the silos in our healthcare delivery system. Since hospitals are designed for treating acute, potentially-reversible problems, they report post-discharge, patient-rated satisfaction surveys that totally miss the experience of the many patients who die during their stay. Likewise, we see skilled nursing facilities as places for rehabilitation, so we require a Minimum Data Set that focuses on restoration of function, even though many patients languish and die there. Since hospice is the place for dying, that’s where we’ll mandate reporting of end-of-life quality measures, but that’s not going to improve the quality of dying where most of it happens.
The Medicare final rule creating ACOs requires them to report on 33 quality measures linked to how much they can share in any savings. Despite the striking disproportion of Medicare dollars spent in the last year of life, none of these measures has anything to do with comfortable dying or the appropriate utilization of hospice or palliative care. In the original 127-page proposed ACO rule, the word “hospice” appeared once and “palliative” not at all. Comments from the AAHPM and others must have been heard, because the terms appear about a dozen times in the final rule. It’s a step in the right direction, but we have a long way to go. We need researchers to develop and validate quality of life and quality of dying measures for all relevant care settings. Once available, we should push for their inclusion in all mandatory quality reporting and pay-for-performance systems. We’ll never get the maximum value for the Medicare dollar without it.
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
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.
It was a privilege to represent AAHPM at the fall meeting of the Council of Medical Specialty Societies in Washington D.C. on November 18 & 19, 2011. This was my first CMSS meeting and I was struck by the energy, collegiality, and nimble structure of this “society of medical societies.” There is no House of Delegates to debate everything like in the AMA – just a Board of Directors, Component Groups (CEO’s, Membership directors, clinical practice guideline developers, etc.) and occasional task forces. They have done a lot, but only taken a stand on 5 public topics – the most recent being support of comparative effectiveness research (in a letter the AAHPM signed).
I spent my time in a day-long seminar on the upcoming REMS – Risk Evaluation and Mitigation Strategy for long acting opioids. Regina Labelle, from the White House Office of National Drug Control Policy certainly got my attention when she explained that in 17 states, deaths from unintended drug overdoses now outnumber deaths from traffic accidents! Understandably Congress and the Administration want something done about this. Theresa Toigo, R.Ph., M.B.A., from the FDA explained that the Food and Drug Administration Amendments Act of 2007 (FDAAA) gave FDA the authority to require manufacturers to develop and implement a REMS when necessary to ensure the benefits of a drug or biological product outweigh its risks.
On April 19, 2011, in conjunction with the Office of National Drug Control Policy (ONDCP) release of the Obama Administration’s Epidemic: Responding to America’s Prescription Drug Abuse Crisis—a comprehensive action plan to address the national prescription drug abuse epidemic, FDA issued letters to application holders (makers and seller of opioids) directing them to submit a REMS within 120 days and describing the elements that needed to be included in the REMS (REMS notification letters).
So what is REMS and why should we care?
After notifying the makers and marketers of long-acting and extended-release (LA/ER) opioid drugs that they were required to submit a risk evaluation and mitigation strategy (REMS), FDA has been working with the sponsors that market these products on the required REMS. The central component of the Opioid REMS is an education program for prescribers (e.g., us) so that LA/ER opioid drugs can be prescribed and used safely. FDA expects the prescriber training to be conducted by accredited, independent continuing education (CE) providers (like AAHPM), without cost to the healthcare professionals, under unrestricted grants to accredited CE providers funded by the sponsors. Kate Regnier, M.A., M.B.A., from ACCME assured us that industry would not be dictating the curriculum so the CME can comply with ACCME standards.
What are they going to be teaching us?
On November 4, 2011, FDA announced the availability for public comment of a draft “Blueprint.” The Blueprint, developed by FDA with advice from other Federal agencies, is a basic outline and the core messages that FDA believes should be conveyed to prescribers in a basic two to three hour educational module. After it is completed and approved as part of the REMS, the Blueprint is posted on the FDA web site for use by CE providers in developing CE courses. The Blueprint for provider education can be found at
While, in general, I found these tenets reasonable, there isn’t a lot here about effective pain management for seriously ill patients. A few quotes will give you the flavor:
Health care professionals who prescribe extended-release (ER) and long-acting (LA) opioids are in a key position to balance the benefits of prescribing ER/LA opioids to treat pain against the risks of serious adverse outcomes including addiction, unintentional overdose, and death.
Prescribers should caution patients that ER/LA opioids can cause serious side effects that can lead to death.
Prescribers should explain that sharing ER/LA opioids with others may cause serious side effects including death, and that selling or giving away ER/LA opioids is against the law.
Prescribers should ensure that patients adhere to a treatment plan and monitor patients for misuse and abuse by
- Recognizing aberrant behavior
- Utilizing Prescription Drug Monitoring Programs to identify potential abuse where available
- Understanding the role of drug testing and performing drug screens as indicated
- Screening and referring for substance abuse treatment when indicated
- Performing medication reconciliation at each visit
Whether this program will be required to maintain your DEA registration is being discussed. The REMS notification letters stated that although there is no mandatory requirement that prescribers take the course as a precondition to dispensing the medication to patients, application holders will be required to establish goals for the number of prescribers trained, collect the information about the number of prescribers who took the courses, and report the information to FDA as part of periodic required assessments. Although FDA recognizes that additional training modules could be helpful, FDA’s goal is to require basic education for all prescribers of long-acting and extended-release opioids, and at this time, FDA does not intend to develop or approve messages as part of the REMS beyond those approved in the basic core module.
Can we have any input into this?
We have until December 7 to submit comments on the draft Blueprint http://www.regulations.gov.
The AAHPM has been working with a group called CORE to develop a program that meets these criteria. Stay tuned for more about this.
by Emily Muse, AAHPM Communities Manager
I am a planner. I create lists, diagrams, and spreadsheets for almost everything. I even use a planning rubric when packing for weekend trips. Obviously, I began my preparation for the 2011 AAHPM Washington DC “Capitol Hill Fly In” by researching my congressional representatives and senators. I wanted to learn as much as possible about the people I would be meeting and were “representing” me in D.C. A lot of this investigation was done just by entering my zip code in the AAHPM Legislative Action Center. (http://www.capwiz.com/aahpm/home/)
At a glance I was able to discover all the committees that my senators and my congressional representative served on. How they had voted on specific legislation and issues and I read and reread all the proposed legislation that would affect AAHPM members. It was wonderful. After accessing their office addresses I plotted out where they were all located within the map of Capitol Hill.
I was ready, or so I thought.
What I was not prepared for was the knowledge, dedication and tenacity of our AAHPM members. It did not surprise me, it wowed me. Not only had our members prepared for this visit, they had been advocating and championing Hospice and Palliative in ways I had never thought about. One member encourages staff to contact elected officials regularly about HPM issues. Another invited his representative to visit his program and learn firsthand what Palliative Medicine provides for constituents. All of our members had brought with them anecdotes of patients achieving successful pain and symptom management, making decisions about their care that made sense for themselves and their families and utilizing allocated resources appropriately due to team based care and excellent communication among providers. And what was even more impressive, Senators, Representatives and Staffers all listened. They asked questions and posed some opposition, but they were open to learn more. I hope some of those members who participated in this year’s DC Fly In will write about their individual experiences. I think all of the participants were amazing, even one who commented that this was “just another way we advocate for our patients”.
While reading this article from the Philadelphia Inquirer, AAHPM staff came across this definition:
Palliative care, which focuses on treating the symptoms of diseases either fatal or curable, has become increasingly common in U.S. hospitals.
What are you thoughts? How do YOU define palliative care?
by AAHPM President Ronald J. Crossno, MD
Do we take care of patients or do we partner with educated consumers who are knowledgeable about healthcare economics? The answer is clearly some of both, depending on the individual in front of us, but a new report from the Deloitte Center for Health Solutions suggests the prospect of the engaged consumer is increasing. Two findings of this study may also indicate that US consumer attitudes may be changing in a way that may allow for systematic healthcare cost savings.
Deloitte surveyed almost 16,000 healthcare consumers in 12 countries, all with variously developed healthcare systems that often garner similar consumer responses despite their differences. One of those differences is how much of the country’s GDP is spent on healthcare, ranging from a low of 4.7% in China, to an average of 10-11% for most, to a high of 17.6% for the US. Per-capita spending in the US stands out at over $8,000, with no other country surpassing $5,000. However, in many other areas, there was considerable uniformity in answers. Most consumers believe themselves to be in “excellent” or “very good” health, despite roughly half of consumers saying they have been diagnosed with one or more chronic conditions. Data indicates that consumers are increasingly attuned to and knowledgeable about healthcare, in general.
Nevertheless, consumers in all countries rated their understanding of their country’s healthcare system as low and satisfaction with their current system also generally ranked low. Many indicated wasted spending as a major issue, with the most common cause of waste being identified as “redundant paperwork in the system.”
However, it is at this point that the US has another standout point. A common cause of waste identified by 35% of US consumers was: “At the end of life, extreme measures taken to extend life for a short period of time instead of making the person comfortable with things such as pain relief and palliative care.”
So the US spends considerably more than any other nation on healthcare, but consumers identify extreme measures at end-of-life as wasteful. Note that these are consumers – not policy-makers or healthcare professionals. Are these two items really related? Perhaps, though this study isn’t designed to answer that question.
To me, these findings suggest that there is a large group of Americans who innately understand the type of message that Hospice & Palliative Medicine provides – that individualized goal-setting to meet the specific wishes of individuals and their families at the time of life-threatening and serious illness provides the treatments wanted while resulting in overall cost savings. Either we’ve been successful in getting our message out or consumers figured this out on their own.
Both represent success, since all major movements require significant grassroots support in order to garner widespread institutional and/or governmental support for funding and full implementation. It appears that we may be crossing the tipping point for such support. Despite the economy (or perhaps because of it), HPM’s message is being heard. Let’s keep getting it out there!
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.