Hospice and Palliative Medicine
There is much talk in health care, especially in the fields of palliative and end-of-life care about “Advance Care Planning”. And rightly so. For those with advanced illness, this process is critical to patients receiving the treatment they want and only the treatment they want. The process done well clearly improves patient’s perceived quality of life, reduces the burden of suffering, raises patient satisfaction, and also seems to reduce overall health care costs.
For a medical treatment team, whether palliative care or other, the process often needs to be focused on decisions about health care choices. Those are our immediate concern and often those concerns truly need to be addressed in the very short term such as making decisions about resuscitation with an elderly patient suffering from heart failure and pneumonia.
However, there is also a class of “patients” emerging who, while they have a diagnosis of HIV/AIDS or “terminal” cancer are not necessarily near death and, because of maintenance therapies that can often have very controllable side effects, look and feel fairly healthy. They can therefore do lots of “normal” things and lead a “normal” life. The other day I saw Magic Johnson on TV announcing he has purchased yet another sports team in LA. These people may not be so different from someone like me. I’m healthy for my age but will soon be at the age where I will be forced to begin accepting Social Security payments whether I like it or not. I clearly have a lot less of my life ahead of me than I have behind me.
In this situation, certainly the decisions we generally associate with advance care planning are critical. Under what circumstances do I want to be kept alive if I can no longer make decisions for myself and by what methods? But as I begin to seriously engage this phase of my life, I increasingly realize that there are questions that go far beyond this which, if I engage them seriously, will make all of the life I have left more complete and fulfilled. The first issue for me seems to be that if there are things I want to do or a way I want to be sometime in my life, I need to be about creating that reality for my life now. And I can create much of that reality if I plan for it. However, this planning also means re-examining some assumptions about how I have lived my life. Do I really need the “security” of a steady job and is that security coming at a price that I no longer need to or want to pay because it is keeping me from other things I want to do? How many of my possessions would I really miss if I didn’t have them anymore? Do I continue to need to own a house with the responsibility that brings or can we be free of it?
These are not simple or easy questions. I have no intention to ever retire in the normal sense. I don’t even play golf and I don’t like either Florida or Arizona. I want to cook more and maybe learn Spanish. And I want to continue my professional journey down a road I still have intense passion for.
My point in all this is that, while advance care planning in the medical context is important, it is really only a part of a larger conversation. And this is not just about a bucket list either although that can be part of it. Ideally, it should be the end product of a much longer and intricate process of deciding how you want your life to be whether you have some idea of how much longer that life will be or not.
Certainly, for us as chaplains, I think we need to be much more intentional than we have been about engaging our patients and their caregivers in these larger issues for themselves. To the extent we can help patients explore whatever these kinds of questions are for them, we will help, not only make the decisions about Advance Care Planning, but create the lives that they want for themselves and those they love.
George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy
I want to express my sincere gratitude to the organizers and sponsors of the seventh annual Kathleen M. Foley Palliative Care Retreat and Research Symposium. This was my second time attending the retreat designed to provide a forum for interdisciplinary palliative care researchers. Participants include grant recipients from the National Palliative Care Research Center (NPCRC) and American Cancer Society (ACS), research scholars of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA), as well as other leaders in the field of palliative care. Once again, the meeting lived up to its reputation as one of the best for learning, collaborating, and developing new ideas.
Let me back up. I am a junior investigator with aspirations of becoming an independent palliative care physician-scientist. During the weeks prior to this year’s retreat, I had what was probably the first of many internal debates about my career choices. Let’s face it: academic medical careers can be daunting. I was struggling to reconcile my sheer conviction in my research with the realities of the current funding climate, personal fears of failure, and work-life balance. Put bluntly, I needed community and I needed inspiration.
Within minutes of the welcoming remarks, I thought, “Oh yes. HERE are my people. HERE is my inspiration.” And, that the sense of community and inspiration just kept coming. Whether it was the opening, middle, or closing plenary, I was glued to my seat, fascinated by the research (and frantically scribbling notes in the fancy notebook supplied by the venue). I watched my mentor (the incredible Joanne Wolfe) accept the American Cancer Society’s Pathfinder Award with grace, humility, and humor. She reminded me that all of us have similar struggles, but we also find great joy and gratitude in our work. During my own work-in-progress presentation, I solicited and received dozens of helpful comments and suggestions for continuing and expanding my own research projects. (In fact, I discovered yet another challenge in academic medicine: reigning in my own enthusiasm.) During a break-out session for pediatric palliative care researchers, we shared mutual pitfalls and successes in our research endeavors, providing yet more perspective of how to navigate my own career development. And, on top of everything else, I met several of my role models and other respected leaders in the field. I left with a renewed sense of commitment.
In retrospect, I realize the Kathleen Foley retreat has (again) succeeded in exactly what it aims to do. It provided a young investigator with a sense of community, inspiration, and purpose. I have no doubt the more senior investigators would say the same. I say again to the organizers and sponsors: “Thank you for this incredible opportunity.” I am already looking forward to the next one.
Abby R. Rosenberg, MD, MS (2012 AAHPM Scholar)
Nicky Quinlan, MBBChBAO MRCPI, and Conrad Williams IV, MD
Hospice and palliative medicine (HPM) is growing as an accredited specialty, in keeping with the growing need for timely palliative care for the seriously ill population of all ages. Currently, the only route to HPM board certification is through an accredited fellowship. HPM has not yet joined the National Resident Matching Program (NRMP) match process, whereas geriatric medicine will have its inaugural match day in January 2014. We believe it is time for HPM to participate in what has become the gold standard process for fellowship fulfillment. We elicited opinions of and experiences with the current asynchronous “nonmatch” application process from colleagues to assess the pros and cons.
Challenges of Rolling Admission
“My top three programs had interview dates separated by 4 months each, leading to my having missed the deadline for one, being offered a position by one, and then not being able to interview at the third because of the length of time prior to their selection process,” one colleague reported. “In my opinion, we have ‘arrived’ as a subspecialty and we need to act like it, including joining, at a minimum, the timeline of the NRMP. This makes further sense due to the number of programs that are transitioning to using the Electronic Residency Application Service as an application tool.”
Another physician commented on how the rolling fellowship admission process affected her family. “Without a formal match, I watched my husband be forced to make huge career decisions on the information he had at that moment rather than all of the information that could be available. Getting fellowship offers at different times forces people, and families, to act on urges rather than thoughtful, prediscussed plans. When more than one offer comes into play, it turns medicine into a business, and in essence, is no longer a true match. I also find it ironic that my husband and I could couples match in residency and happily live together for 3 years, but when it came to applying for fellowship, this was not a possibility. If palliative medicine became a formal match, it would allow for the possibility of some couples matches if the timelines were the same.”
One of our respondents also suggested how the match program may help the field better compete with other specialties. “I emailed the program director directly and interviewed informally at a medical conference and then later formally with program faculty. Shortly thereafter, I received an offer that overlapped with an offer from a different program at the same institution. It was a tense time to decide which specialty to pursue, but it has worked out well for me. I can see how the match can level the playing field for all involved.”
A Case for Rolling Admission
One physician who benefited from the rolling admission process remarked, “My process worked out well for me because I came to palliative care after all of my fellow classmates went through the match. Palliative care as a service came late to my hospital (during my second resident year) so it was [my] third year by the time I was fully exposed to it and knew I wanted to pursue it as a career. That meant I would have had to wait another year and perhaps [the program] would have been with one less fellow. The nonmatch rolling admission process was a win-win for both me and the program.”
We have reported the experiences of only four fellow candidates, and this by no means represents the entire applicant population. However, we have tried to provide a sample of varying experiences and opinions. Given overlapping and disparate rolling admissions for various programs, it appears many candidates are afraid of shooting themselves in the foot or, worse yet, burning bridges with programs by accepting a position then later rescinding it. The uncertainty and apparent stress inherent in the current application process is palpable in the responses.
AAHPM has met with representatives from NRMP and has made available an informative webinar on the match process targeted to program directors (www.aahpm.org/resources/default/national-resident-matchingprogram-webinar.html). Interest surveys have also been distributed and collected from hospice and palliative medicine fellowship programs.
The AAHPM Board of Directors will consider a recommendation by the Leadership & Workforce Strategic Coordinating Committee and Academic Palliative Medicine Task Force to move forward with the next steps necessary toward Academy involvement in the NRMP match over the next several months. What are your thoughts and opinions?
The opportunities—and the imperatives—for the palliative care field to collaborate with other physicians, and with oncologists in particular, are detailed in an article I wrote for the latest issue of AAHPM’s Quarterly newsletter. The Academy is partnering with oncology groups on a number of fronts, including a joint project with the American Society of Clinical Oncology to test technological approaches for getting the latest palliative care research into the hands of working oncologists. The Academy was also represented at a recent meeting hosted by the American Cancer Society’s Cancer Action Network to talk about how to advocate for palliative care in Washington. This kind of collaboration increasingly points toward the largely uncharted realm of out-patient and community-based palliative care where many of the patients we want to reach receive their care from oncologists and other physicians.
As this article was being finalized, a similar exploration of the palliative-oncology interface was offered in a June audio-conference from the Center to Advance Palliative Care on “embedding palliative care in the oncology clinic” by palliative care leaders from Massachusetts General Hospital. These examples reflect the growing consensus that there simply won’t be enough trained, board-certified palliative care specialists to go around in a rapidly reforming healthcare system that is finally starting to recognize their intrinsic value for patients with serious illness.
Given current and anticipated hospice and palliative medicine workforce shortages, there needs to be some way to leverage this precious resource for maximum impact. And that would seem to demand better integration with other providers through a kind of two-tiered system of palliative care. Primary care physicians, oncologists, and other specialists would be oriented to the basics of providing palliative care for their patients, while cued to when a more specialized approach is needed via referral of their more difficult cases to palliative care specialists.
Oncology is a logical place to start experimenting with this approach, as the quarterly article describes. We’d love to hear how your palliative care program is pursuing greater integration with oncologists and other specialists and involving them in providing primary-level palliative care. Perhaps the next great arena for collaboration, coordination and integration is with the more than 30,000 hospitalists now practicing in U.S. hospitals. They, too, are centrally located to identify patients who need palliative care and to provide the palliative care basics for the majority of such patients.
Health care has become a world of dizzying change as more and more people realize that the current system is not working for anyone. There are new regulatory models, new care delivery models, and new funding models, but no one has the silver bullet. Along with the increasing pace of change comes a flood of new concepts and terms to describe them, many of which are ill defined and themselves evolving.
Nowhere is health care changing more fundamentally than in how it regards the role of the patient in the process of care. Patient satisfaction has long been a standard metric for many health care institutions, but for many never rose above a “nice to have” next to the “must haves” of clinical effectiveness and financial viability. In fact, many thought patient satisfaction often got in the way of the other two goals because giving patients what will satisfy them was thought to cost money and slow down or even subvert the clinical process.
Then HCAHPS drove a change to “patient experience” – related to patient satisfaction but not the same. Experience is about how reliably a given process like pain control happens and satisfaction is about how happy the patient is with that process. And finally we have arrived at “patient engagement”- a subset of “patient experience” perhaps but maybe the biggest change of all. Fundamentally, patient engagement requires that we who provide care involve the patient as a full partner in the planning and carrying out of that care. This change would seem to mark the official death of medical paternalism. But, it certainly feels like “selling the farm” to many. How can good care result when we let those without training in the field have at least a vote in the treatment decisions and maybe even a veto? Certainly lots of people will make “bad” decisions.
To those of us who are familiar with the history of how authority has operated in western religion, this debate has to sound familiar. Arguably, the most far reaching change Martin Luther and other reformers brought about in western Christianity in the 16th century is the idea that every Christian can have their personal relationship with God and can independently decide what they believe. This change was implemented in part by translating the sacred text of Christianity into a language that each believer could read or at least understand. For the most part, the authority of the ordained religious leader remained as the expert on belief and practice but that role became much more advisory than prescriptive. The religious leader now had to convince the faithful that a certain belief or behavior was “right” rather than having the belief or practice followed just because the leader said so.
Modern professional health care chaplains have long been trained to operate in this advisory model. It has been for years against the codes of ethics and best practice in professional chaplaincy to tell someone what to believe or practice unless specifically asked for that advice. Patient engagement has been the standard of care. Those of us who have worked in this way for a long time are very comfortable letting the patient lead the conversation and reach their own conclusions about what their own religious or spiritual belief and practice should be even when they differ from our own and how that belief and practice can help them cope with their illness. In fact, this model of care seems to work better than dictating to the patient beliefs and behaviors which they then mostly don’t follow.
That experience of chaplaincy practice leads me to feel confident that true patient engagement of the kind professional chaplains have long practiced will in fact improve, not only the process, but the outcomes of health care. Many will resist as many have and still do resist this model of chaplaincy. However, I am convinced that professional chaplaincy can be a major facilitator of this necessary change and can help our patients and our health care colleagues embrace this new and strange but ultimately very beneficial model.
George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy
This past Tuesday was the annual National Healthcare Decisions Day when patients are encouraged “to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” To be clear, this is not about getting people to agree to a Do Not Resuscitate order or agreeing to limit their treatment options if that is not what they want. It is presumably an opportunity for patients to take control of their care at a time when they otherwise would not be able to do so. For those of us for whom religious beliefs and values inform and undergird these decisions, it is about taking advantage of an open invitation from a health care system which so often seems oblivious to those beliefs to make them known and document them in relationship to care decisions.
In observing this day, Dr. Eric Widera offers a very provocative post on GeriPal. He cites a recent editorial by Theresa Allison and Rebecca Sudore in JAMA Internal Medicine and a related study by Heyland and colleagues investigating documentation of treatment preferences by a sample of elderly patients in Canada. One of the most dramatic and disturbing findings of the study was that, for those who had stated preferences, over two-thirds of those preferences were either not documented at all or documented incorrectly in the medical record. This finding calls into serious question the basic premise of advance directives. If one’s stated preferences are likely not to be observed, why even bother?
But Allison and Sudore up the ante even further when they state:
“Discussions about goals of care and code status constitute a medical procedure every bit as important to patient safety as a central line placement or a surgical procedure. Much as we have developed systems to improve patient safety in surgical procedures, we need to develop systematic approaches to discussing patient values and goals of care.”
Dr. Widera then raises the obvious question, “Should failure to follow preferences be a medical error?”
For those of us who are not physicians, this could be an invitation for doctor bashing. However, we need to all take seriously that patient safety is everyone’s responsibility. So if this is about patient safety, we are all culpable. But, even if this is not a patient safety issue, I would expect that all of us believe that patient’s wishes should be respected and every effort should be made to make that happen.
The newly released 3rd edition of the NCP Clinical Practice Guidelines contains the following criterion under Guideline 8.1. This criterion applies equally to all members of the treatment team.
“All expressed wishes, preferences, values, goals, plan of care, surrogate decision makers and advance care plans are routinely documented, including the completion of clinical orders such as inpatient resuscitation status, out of hospital do not resuscitate orders, and health care surrogate declaration documents for adult patients.”
So it seems to me the bottom line here is that all members of the treatment team are obliged, individually and as a group, to make sure that all stated treatment preferences and advance directives are well documented, well understood by the team, and observed. If the finding of this study turns out to be true more widely, all of us bear responsibility. Dr. Widera along with the authors of the editorial raise an interesting and provocative question. However, no matter whether consensus ever develops around the answer to that question or not, the findings of this study should galvanize us all to action. The findings point out that while getting patients to fill out their advance directives is a necessary first step, there is another necessary part to the process which may be seriously broken. Each of us needs to be committed to point out that brokenness each and every time we see it.
George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy
by Larry Beresford
On February 21 AAHPM, on behalf of its members and the specialty of hospice and palliative medicine, joined with 15 other medical societies to introduce Round Two of Choosing Wisely, a major national health care quality initiative sponsored by the ABIM Foundation. In a health care system undergoing rapid reforms, serious turmoil and escalating demands to raise quality and reduce costs, palliative care is often offered as a solution for providing appropriate care more in line with patients’ and families’ goals, with fewer unwanted and unhelpful treatments and, frequently, lower overall costs. But increasingly, HPM will be asked to show the evidence for the quality and efficiency of its own services, just like other sectors of health care.
The Choosing Wisely campaign challenges participating medical societies to name five treatments that are frequently performed but often unsupported by the medical evidence—and to share this list with their members and the public. AAHPM accepted that challenge, and took its place at the podium on February 21 with other societies concerned about their place in the health care value equation. The latest issue of AAHPM’s Quarterly newsletter describes how the academy developed its list, who participated in that work, and how academy members can join in the campaign in their own communities and facilities.
Now we’d like to hear from you. What do you think of the Academy’s Choosing Wisely list? Are there other treatments of questionable value that you think are equally deserving of quality improvement interventions to target unnecessary utilization? What is being done in your work setting to promote the goals and values of the Choosing Wisely campaign?
Larry Beresford is a freelance medical writer from Oakland, CA, who specializes in hospice and palliative care issues.
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.