Palliative Medicine and Patient Involvement:The Heart of Patient-Centric Care
By Wes Chapman, Mike Choukas, Charles Hutchinson PhD, and Steve Maker
This is the final white paper on treatment issues in a series addressing quality improvement and patient focus in healthcare, specifically in oncology treatment pathways as they evolve under pressure from the Medicare Shared Savings Program and other outcomes of the Affordable Care Act.
In the previous white papers in this series, we have dealt with several key components of an effective cancer treatment plan: care plan redesign, quality improvement, payment alignment initiatives for a complete episode of care, best practice clinical pathways and quality metrics, and the use of patient-reported outcomes (PROs) to measure the patient experience during treatment. In this paper, we look at two other necessary components: palliative care and patient involvement in decision-making. These elements complete the treatment pathway and bring the focus where it belongs: on the patient. They are also inextricably linked.
In order to make rational decisions about their own healthcare, patients must be fully informed about all of the treatment options open to them. They must also be in a mental and emotional state that allows them to think clearly. The first requirement assumes a commitment from the healthcare provider (physician, nurse, administration, and staff) to be honest and realistic about the risks and outcomes associated with every treatment option. The second requirement assumes a similar commitment to palliative medicine as an equal partner to curative medicine – palliation that treats not only the body, but also the patient’s functional, mental, and emotional states. If either of these requirements isn’t met, the decision-making is not truly shared, and the treatment is not patient-centric, it reflects only the desires and priorities of the people and institutions providing care.
Unfortunately, despite great progress in recent years, many if not most patients in oncology are not benefiting from advancements in palliative care. According to a recent study from the Dartmouth Atlas of Health Care, the average number of terminally ill patients who were admitted to hospice in the last six months of life was only 45.1% (2010 data). This was the practice at 23 notable academic medical centers, including those rated by U.S. News and World Report as being among the best hospitals for clinical excellence in 2012-13. The range was 59.1% for the highest referral rate, down to 23.1% for the lowest – less than one-quarter. (What Kind of Physician Will You Be? Variation in Health Care and Its Importance for Residency Training, Anita Arora and Alicia True, Dartmouth Atlas of Health Care, 10/30/12) Palliative care is the core of hospice, and it has been a part of our language since 1525. If, indeed, it takes an average of 17 years for at least half of American patients to receive benefits from major discoveries (E.A. Balas and S.A. Boren, 2000), palliative care and its partner, shared decision-making, are lagging way behind schedule.
A Brief History of Palliative Care
Palliation has spent most of its career under a shroud of negativity. The verb “palliate” first appears in English in the mid sixteenth century with the same meaning as its Latin root: to cloak, to clothe. By 1598, it had picked up the negative figurative meanings of “to cover up an offense, make excuses for, extenuate.” The medical sense followed a similar trajectory from good to bad. In 1525, Francis Bacon wrote:
A wise physician will consider whether a disease be incurable … if he find it to be such, let him resort to palliation; and alleviate the symptoms. (Sylva, §61)
Less than twenty years later, however, the word was being used in reference to mountebanks, whose “cures break out again, being never soundly but superficially healed” (Tho. Fuller, The Cause and Cure of a Wounded Conscience). In 1714, even a recognized doctor could be insulted by the term: “He is but half a physician, he hath palliated our sores and diseases, but he hath not removed them.” (Abp. Sharp, Sermons)
By the 1930s, the dictionary meaning of medical palliation – still in third position after the now archaic “cloak” and the still pejorative “cover-up” – had moderated to the relatively neutral “mediate.” However, the physician perspective was two hundred years behind the public understanding. In the 1950s, a Boston surgeon wrote:
If there is a persistent pain which cannot be relieved by direct surgical attack on the pathological lesion itself …, relief can be obtained only by surgical interruption of sensory pathways … if surgery is withheld, the sufferer is doomed to opiate addiction, physical deterioration or even suicide. (Quoted in The Emperor of All Maladies, Siddhartha Mukherjee, M.D., Scribner, 2010)
As Dr. Mukherjee points out, the response to a failed surgery was more surgery; all other relief was to be withheld. However, a trend toward positive change had begun.
In the late 1940s, the modern palliative care movement began to grow in Europe, led by Dr. Cecily Saunders, an American nurse who had retrained as a physician in England. Her experience treating cancer patients in London’s East End ghettos made her realize how the needs of patients who had not responded to treatment were being almost completely ignored, with all attention focused on those who showed the slightest sign of improvement. In a triage of the cruelest sort, incurable patients were simply abandoned to back rooms. Saunders responded by, in Mukherjee’s words, “resurrecting a counter-discipline—palliative medicine.” And she deliberately avoided the term palliative care because it was her stated opinion that care was a “soft word” that would never be respected by the medical community.
Whether or not that opinion was correct, her movement crossed the water to the U.S. in the 1960s and eventually led to the modern hospice movement. In 1970, the unabridged Random House dictionary defined palliate (now the second definition) as, “to relieve without curing; mitigate; alleviate.” We are back to the meaning of Francis Bacon, though without the wise intent he asked of his era’s physicians.
In 1974, the first hospice in the U.S. opened at Yale. In the 1980s and on, research in the form of clinical trials began to show a wide range of benefits from palliative medicine: better quality of life, better self-reported health, better physical functioning, better mental and emotional health, lower treatment costs, a chance for both patient and family to say good-bye, and a longer life. This is a key point: Patients who stop curative care and move to hospice, whether at home or in a facility, often live longer than patients who continue aggressive treatments.
The hospice movement has become widespread and the public perception has moved even farther. The 2005 edition of the New Oxford American Dictionary puts the medical definition of palliate in the first position, and it is, “make (a disease or its symptoms) less severe or unpleasant without removing the cause.” We are no longer expected merely to mitigate or even alleviate; we are to make the disease less unpleasant, to address both physical symptoms and emotions. This is a definition a patient can easily understand.
Shared Decision-Making: Tarred by the Same Brush
Clinicians have also been slow to accept the practice of shared decision-making in its complete form. As a concept, it has a shorter history than palliation, so it has had less time to penetrate the public mind, let alone the medical establishment. Admittedly, shared decision-making is not an easy practice to implement, particularly in oncology. It can be difficult to fully inform patients and their families about life-threatening illnesses and complicated treatments without overwhelming them, and even more difficult to alleviate their emotional distress when they are overwhelmed. It takes time to present the information so that it can be understood, and to give patients tools that can help them make what could well be the hardest decisions they will ever face in their lives. Shared decision-making also demands a very personal involvement by the physician:
Shared decision-making requires the physician to make recommendations with the values and outcomes as defined by the patient. (italics ours; from The Best Care for Cancer Patients, Max Vergo, M.D., Assistant Professor, Geisel School of Medicine, DHMC, Section of Palliative Care, in a 10/11/2012 presentation.)
The long history of medical practice has always placed the physician in the role of expert, director, and commander-in-chief. In that respect, shared decision-making has always faced a stubborn resistance that stems from a philosophical tenet of modern medicine: the imperative to fight disease to the death. Here again, there has been change, and it follows the same trajectory as palliative medicine. The term shared decision-making begins to appear in the literature in the mid to late 1950s, with a steady increase in references, followed by a surge in the 1990s. A major review of the subject in 1997 lists 63 citations (Shared Decision-Making in the Medical Encounter: What Does It Mean? (Or It Takes at Least Two to Tango), Cathy Charles, Amiram Gafni, and Tim Whelan; Soc. Sci. Med. Vol. 44, No. 5, pp. 681-692). Today, there is both an Informed Medical Decisions Foundation and a Foundation for Informed Medical Decision Making, and the websites of most major cancer centers have sections on patient education.
Still, less than 50% of terminally ill patients in our major teaching hospitals were referred to hospice in 2010. Somehow, that decision is not being made nearly often enough.
Extending Our Definitions
Hospice: A home providing care for the sick, especially the terminally ill.
Cecily Saunders made palliative medicine the core of hospice care. This was only right; the terminally ill deserve relief from their symptoms, and also from the fear and anguish with which our culture faces dying. We can now find hospice programs in many communities, caring for people at home and, more and more, in independent facilities or dedicated wards in hospitals and cancer centers. Hospice is the most established way to deliver palliative care in the U.S.
Unfortunately, that practice equates palliation with hospice, and limits it to just the second half of the definition. Palliative care is understood as only for the terminally ill, only in hospice, and only in the last days or week of life. This has serious negative consequences. It delays palliation too long and it reaches far too few patients who need the medical and non-medical benefits that palliation provides. It also denigrates the very concept. Palliative care may now mean “death with dignity,” but it has also come to signify that the end is at hand and all hope is lost. Physicians tend to reject it as a white flag, while the unprepared patient reacts with shock, denial, and even anger – all the usual stages of mourning, with no time left to resolve them.
Palliation has also been politicized. The term death panel was applied to palliative care teams because they would counsel dying patients about the actual risks and benefits of proposed treatments, including the option of refusing futile treatments in favor of supportive palliative care to ease their final days. Ironically, this “death panel” advice often leads to longer lives.
Any seriously ill patient can benefit from palliative care, whatever the prognosis for survival. This is particularly true in oncology, where the symptoms and treatments can be so harsh. There is an emotional component that must be addressed as well. The very word cancer has a heavy resonance. The media has bombarded us with stories of its dire treatments and outcomes, its rare miracles. We are all aware of the constant “War on Cancer,” and its ever-receding victory. And most of us know at least one family member or friend who has died of cancer. Dr. Mukherjee called it “The Emperor of Diseases” for a good reason, not least its place in the public perception. A typical patient receiving a diagnosis of cancer reacts with panic. Even the news of a good prognosis is met with underlying doubt. From day one, the cancer patient is in a mental state guaranteed to reduce the effectiveness of treatment and the patient’s quality of life.
This is why palliation must treat mental, emotional, and spiritual symptoms, along with the pain, nausea, and loss of physical function. Dr. Vergo, quoted already above, names two critical components of palliative care: realistic hope and compassionate discussion at end of life. But these are critical at any stage of treatment. Palliation has been shown to improve outcomes. It is as much a part of healing as it is of easing death for the incurable. In fact, it is not about death – it is about living well while dying.
The Parallel Palliative Treatment Path
Palliative care is specialized team-based medical care focused on providing relief from uncontrolled pain, overwhelming suffering, and the stresses that accompany serious illness. It helps patients live a meaningful life. It is appropriate at any stage of a serious illness and is provided in conjunction with disease modifying, curative, and life-prolonging therapies. (Supportive Care Innovation 2012; Vermont Assn of Hospitals and Health Systems, with the Vermont Visiting Nurse Assn)
Once they understand what palliative medicine is, the general public accepts the concept whole-heartedly. In a 2011 poll that used the above definition, 90% of the respondents said they want access to palliative care services for themselves and their family members (2011 Public Opinion Research on Palliative Care, Center to Advance Palliative Care).
With any disease, a complete episode of treatment runs from diagnosis to end of care and encompasses all related treatments and specialists involved with the patient. In this view, palliative care is not an alternative to curative care; it is a partner, a supportive pathway running in parallel to the clinical oncology pathway. It is a clinical specialty that treats physical symptoms brought on by the illness and the treatment. It also treats symptoms in the emotional dimensions, from the shock of the diagnosis all the way through to follow-up therapy or counseling, whichever is required. In the case of an incurable disease, this would include survivorship counseling for the family.
In the case of remission, it would include survivorship counseling of a different sort for the patient facing the specter of relapse. During the course of treatment, emphasis would continually shift lanes between curative care and palliative care, depending on frequent reappraisal of the patient’s prognosis and – for want of a better word – palliative state, which includes the mental, emotional, and spiritual dimensions of a person’s functionality and sense of well-being.
Just as curative treatments require teams of specialists in chemotherapy, surgery, and radiation, supportive treatment requires a team of specialists in the tools, techniques, and treatment pathways of palliative medicine. In addition to doctors and nurses trained in treating the physical symptoms and side-effects, palliation frequently includes psychotherapists, social workers, counselors, and chaplains. In the fullest implementation, the palliative care team can include healing arts practitioners versed in massage therapy, music therapy, guided imagery, relaxation techniques, and so on.
Following the typical trend in specialization, palliation teams have been isolated in their own specialty silo, often overlooked or disregarded by the clinicians trapped in their own silos. To be fully effective, the silos must be removed. Under Accountable Care Organization and Bundled Payment models, this has begun to happen in curative treatment specialties, and it must now happen in palliative treatment. A team of French researchers found that frequent meetings between palliative care teams (PCTs) and oncology staff committed to collaborative decision-making are the most significant factors for improving end-of-life care. Weekly cross-team meetings resulted in a 50% drop in the administration of chemotherapy within the last two weeks of life, and a 70% reduction in the odds that the patient would die in an acute care setting rather than hospice or home. The researchers concluded:
This suggests that, in addition to early clinical intervention by the PCT, the quality of collaboration and the structuring of discussion may be necessary for integrating palliative care into oncology. (Effect of integrated palliative care on the quality of end-of-life care: retrospective analysis of 521 cancer patients, Colombet et al; BMJ Supportive and Palliative Care, 2012;2:239-247)
It also suggests that too many patients are still receiving futile or even harmful care.
Like any clinical practice, palliative care is growing and evolving as new research uncovers better techniques and outlines better treatment pathways. The incorporation of parallel palliative care into the overall oncology treatment plan requires a similar insistence on best practices and quality metrics to document fidelity, point out needed improvements, and inform treatment choices. Such metrics include objective assessments by members of the palliative care team, of course, but must also rely heavily on patient-reported outcomes (PROs). These self-assessment tools are the only way to measure the patient’s experience and ascertain their sense of well-being in all of the palliative dimensions.
There is another growing set of assessment tools vital for effective palliative care: prognostication tools that can accurately forecast how long a patient can be expected to live. It turns out that doctors are not very good at predicting when their patients will die. They tend to overestimate, by over 500%. (Bias and asymmetric loss in expert forecasts: A study of physician prognostic behavior with respect to patient survival, Marcus Alexander and Nicholas Christakis, Journal of Health Economics, 27 (2008) 1095–1108) It’s a complex mistake, too: they overestimate when they calculate the survival range, when they pick what they think will be the most likely point of death, and again when they tell the patient. And the better they know the patient, the more they tend to overestimate. There are serious consequences to this, because it means that futile curative care may be continued too long, and palliation may be offered – or accepted – too late.
There are a number of metrics medical teams can use to measure symptom load and overall functionality. Functionality is important; it integrates the patient’s physical, emotional, and social capabilities. And it turns out to be a better predictor of approaching death than the stage of the patient’s cancer. The graph below, from Dr. Vergo’s presentation, shows functionality measured by the Palliative Performance Scale, or PPS (the blue line). As long as functionality remains above 60%, the patient is in a reasonably good state. The falling curve between 60% and 50% predicts a faster decline and a higher probability that the patient will be too overwhelmed by symptoms to deal well with the emotional demands of dying – saying good-bye, resolving personal issues, dealing with the stress and fear. And there may not be enough time, either. When functionality drops below 10%, the probability of the patient making it to the next day drops to 34%. (Use of Palliative Performance Scale (PPS) in Prognostication, G. Michael Downing, MD, VIHA Research Rounds, Nov. 26, 2009: Link to the paper)
Prediction tools like the PPS underscore the need to start palliative treatment as early as possible. Combined with PROs and other palliation metrics, they can also be key components in shared decision-making, by alerting the clinical treatment teams when it is time to shift lanes.
Moving Choice from Patriarch to Patient
The standard model for decision-making in medicine has been described as the Paternalistic model – the basic Father Knows Best scripted in a medical setting. The model assumes that the physician shares some information with the patient, but, as described by Emanuel and Emanuel (1992), “the physician authoritatively informs the patient when the intervention will be initiated.” Less patriarchal doctors provide selected information and “encourage the patient to consent to what the physician considers best.” The model makes an assumption that requires omniscience – that the physician always knows what is best for the patient:
The role of physician depicted in this model is guardian of the patient’s best interest. The physician does what he thinks is best for the patient, without eliciting the latter’s preferences. Patient involvement (if there is any) is limited to providing consent to the treatment advocated by the physician. (Shared Decision-Making in the Medical Encounter…, Charles et al, op cit)
This model often leads to a preference misdiagnosis, which relies on another false assumption by the physician: that he knows what the patient wants. Preference misdiagnosis has been defined clearly by Dr. Al Mulley and his colleagues:
We define a preference diagnosis as a doctor’s inference of what a patient would choose if he or she were fully informed. It is an inference because no patient – save perhaps the patient who is also a doctor and world-renowned specialist in the very disease with which he or she is afflicted – is fully informed. Preference diagnosis, like medical diagnosis, is often a best estimate based on imperfect information. (Patients’ Preferences Matter: Stop the silent misdiagnosis; Al Mulley, Chris Trimble, and Glyn Elwyn, 2012, The King’s Fund)
The authors then state what should be obvious: Patients can suffer just as much from a preference misdiagnosis as a medical misdiagnosis.
As an example, they compare the case histories of two women diagnosed with breast cancer. The first readily agrees with the doctor’s recommendation to undergo a mastectomy. Only afterward does she learn that she has been misdiagnosed and did not have breast cancer at all. The second does not want to have a mastectomy, but agrees because it is the only option described to her. Only afterward does she learn that there was another option, probably more suited to a person of her age and condition, but more preferable to her in any case. Had she been told about it, she would never have agreed to the mastectomy. In the first case, the mastectomy was completely unnecessary. In the second case, the mastectomy was an appropriate medical treatment, but was not the patient’s preference. And she regrets it for the rest of her life. Who has suffered most?
This story, and all the others like it, leads to another dangerous assumption: that full information-sharing by itself will solve the problem of preference misdiagnosis. As Mulley et al point out, no patient is fully informed. Just as important, no patient dealing with a life-threatening illness is equipped to make such critical decisions alone. Along with good information, they need effective decision-making tools to help them weigh all of the options and outcomes. Many also need moral and emotional support to express their preference in the face of M.D.s and well-meaning family members who might not agree. Finally, many are simply overwhelmed. As Clark et al put it, they “feel extreme psychological and/or physiological vulnerability, which may make it difficult for them to participate in treatment decision-making no matter how well informed they may feel.” Someone needs to share the burden.
This is where the palliative care team can make a significant difference to the course of treatment. We mentioned above the findings of Colombet et al. In addition to regular, collaborative meetings, one member must play the role of counselor and advocate for the patient. This role can sometimes be played by a family member, but family members are often too emotionally involved to make a clear decision. They are dealing with the awful sight of their spouse, parent, or sibling being racked by illness and treatment; they fear losing their loved one; they have their own opinions on whether this is a war or a passage. Which of them is willing to pull the plug? They need palliative counseling as much as the patient. And what of the patient’s preference here? Do they want the family involved? If yes, which ones?
Shared decision-making, then, involves the patient, the doctor, all family members named by the patient, a full disclosure of information about the treatment options and outcomes, an accurate tool for predicting the approach of death, decision-making tools, and a counselor versed in those tools to serve as advocate for the patient.
And it requires time, often a scarce commodity in the last few days or weeks of life, particularly for patients undergoing last-minute interventions and so medicated against pain as to be semi-conscious. Shared decision-making must begin at the very moment of diagnosis, must be fully integrated into both the curative and palliative treatment pathways, and must be documented and measured as rigorously as any clinical pathways to insure fidelity and highlight areas of improvement.
What Has Taken Us So Long?
It has taken sixty years and more to reach the current state of palliative medicine and shared decision-making. Some of that lag is due to institutional inertia, that 17-year, 50%-penetration gap uncovered by Balas and Boren. Some of it is due to preconceived notions: to resistance by physicians educated in medicine as a war to be won at any cost; to the inferences of physicians who think they know what the patient wants; to the resistance of patients who equate palliation with hospice and hospice with death, and to the passive resistance of patients who do not consider themselves educated enough, smart enough, or wise enough to make their own decisions, or who are simply too exhausted by disease to do so. But there are other barriers that are equally challenging to overcome.
First, palliative treatment pathways are complex. They involve specialists in the treatment of physical symptoms and side effects, but also in non-medical fields such as psychotherapy and social work, not to mention such practices as massage therapy and guided imagery. And they are still evolving:
…here evidence-based medicine struggles to untangle which components, if any, of the complex interventions are important. (Evidence-based medicine: What is the evidence that it has made a difference?!, Henry McQuay, U of Oxford, UK; Palliative Medicine 25(5) 2011 394–397)
This is also true of metrics, including PROs and prognostics. They are out there, but few best-practice tools have been recognized. We need them, not only to document fidelity to endorsed palliative pathways, but also to provide important evidence to support best practices in the field. The public, when given the full definition of palliative medicine, fully accepts the concept, but administrators, regulators, payers, politicians, and many clinicians have yet to be convinced all this is needed or useful.
Second, there is a lack of trained personnel in all of the palliative specialties listed. This was one of three barriers named by national cancer center administrators in a survey reported in the Journal of the American Medical Association in 2010. Medical schools for doctors and nurses are struggling to restructure their curricula not only to offer palliation as a focus, but also to provide more than the usual hour or two in the general requirements.
Third, institutional budgets are not sufficient to cover the full set of requirements for effective palliative treatment plans. This was another barrier listed by cancer center executives in the JAMA 2010 survey. There are a variety of reasons for this, including all of the barriers listed above. Hospital budgets are tight and fiercely contended. Palliative medicine does not have the foothold that longevity and status provide to other specialties.
Fourth, and directly related to number three, the current reimbursement models in health care do not support effective palliative medicine. The regulations surrounding Medicare and Medicaid, set over 30 years ago in 1981, specifically limit reimbursement to non-curative end-of-life care in a hospice program. Though some private insurers will also pay for concurrent curative treatment, others will not. And not all will pay for non-medical components, such as collaborative meetings and counseling. This will not change until palliative treatment pathways have been fully endorsed as best practices, and the patient benefits and costs savings due to palliation are supported by more hard data.
The high costs of oncology care, particularly the costs of new drugs and diagnostics, contribute to the challenge. In the United States, the sales of anticancer drugs are now second only to heart disease drugs. Over two-thirds of them are new within the past decade and therefore much more expensive.
In Bending the Cost Curve in Cancer Care (Thomas J. Smith, M.D., and Bruce E. Hillner, M.D.; N Engl J Med 2011), Smith and Hillner discuss a number of changes that could be made to the practice of oncology to reduce costs, including the adoption of better and earlier palliative care. On the subject of reimbursement strategies, they suggest paying all oncologists a fixed fee per unit of cognitive care. The practice would be compensated separately for support services such as nurses, psychologists, chaplains, and so on, similar to the system used for the technical component of medical imaging. They also suggest shifting to monitored-care pathways, as proposed here.
Finally, our culture needs to get over its fear of dying. We have to get to the point where we can all talk about it with each other, and take the time to resolve our fears and regrets as the end of life approaches. This is the fear fed by death-panel rhetoric. We also need to get over our “suck it up and man it out” attitude when it comes to suffering in general. There is no reason why someone dealing with the pain, nausea, sleep deprivation, drug allergies, opportunistic infections, and myriad other side effects of chemo, surgery, and radiation should have to suck up to anything. The job of getting well is hard enough as it is.
Conclusion: Signs of Realistic Hope
Palliative care should be initiated by the primary oncology team and then augmented by collaboration with an interdisciplinary team of palliative care experts. (From the NCCN Guidelines)
Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient’s illness. (The Integration of Palliative Care into Standard Oncology Care, ASCO Provisional Opinion)
The past decade has seen palliative medicine grow from its long childhood in the arms of the hospice movement into a promising adolescence, accepted by the general public if not its clinical peers in the healthcare establishment. But even that is changing. In 2006, palliative medicine was formally recognized as a medical subspecialty. Since then, the National Cancer Center Network (NCCN), American Society of Clinical Oncologists (ASCO), Commission on Cancer of the American College of Surgeons (CoC), and the National Quality Foundation (NQF) have all endorsed some combination of policy statements, treatment guidelines, and quality metrics for palliative medicine. Significantly, all of these organizations, and more have stated clearly that palliative care should be integrated with curative care from the time of diagnosis.
ASCO and the CoC have gone so far as to set deadlines. Starting in 2015, the CoC will require providers to meet a new standard to evaluate all patients for emotional distress and refer them to palliative programs for help. ASCO has called for “…full integration of palliative care as a routine part of comprehensive cancer care in the United States” by 2020. (Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps — from the American Society of Clinical Oncology. J Clin Oncol. 2009;27(18):3052-3058)
Palliation’s partner, shared decision-making, has also been strongly endorsed. In December 2010 a Salzburg Global Seminar brought together 58 participants from 18 countries to discuss The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care. They concluded that it is ethically right that patients should be involved more closely in decisions about their own medical care, it is practical (through careful presentation of information and the use of decision aids and pathways), and it brings down costs.
These endorsements are key to bringing down the barriers to adoption. They will drive new research to more firmly establish the value of palliative medicine. This, in turn, will lead the Centers for Medicare and Medicaid Services and private insurers to revise their reimbursement models. The shift from fee-for-service to pay-for-performance should support this trend. There is plenty of evidence already that palliative medicine improves patient outcomes and reduces costs, key components of the P4P model.
Some progressive healthcare providers are not waiting for the regulators and payers to catch up. They are already establishing the principles and practices of palliation in their hospitals and cancer centers. The Dartmouth-Hitchcock Medical Center (DHMC), for example, houses a palliation team that grew out of the 1998 Robert Wood Johnson-funded Project ENABLE, directed by Marie Bakitas (DNSc, ARNP, FAAN), an Assistant Professor at Dartmouth’s Geisel School of Medicine, a leading researcher/clinician in palliative medicine, and an Adult Nurse Practitioner in palliative care. Now under the direction of Dr. Ira Byock – himself the author of three popular books on hospice and palliative care and a former president of the American Academy of Hospice and Palliative Medicine – the team has grown to include 17 core members from the medical specialties, plus two full-time administrative support staff, a healing arts practitioner (who is also a nurse), and three artists: a creative writer, a visual artist, and a musician. In his latest book, The best Care Possible (2012, Avery/Penguin), Dr. Byock describes it as “…team-based ‘full-dose’ palliative care.”
The DHMC is home to the Norris Cotton Cancer Center, and so the palliation team sees many oncology patients, but they serve all seriously ill patients. Patients with certain diagnoses are automatically referred to the team, and other patients are referred based on assessments of their palliative needs throughout the course of treatment. Shared decision-making is a core component of the team’s palliation treatment pathway. Often, the referral meets resistance from the patient and family. Many people still equate palliation with dying. The team respects that, and focuses on physical symptom relief mixed with suitable counseling.
The medical staff at DHMC, however, has fully accepted the palliative care team. That acceptance – in fact, the very existence of this diversified team of specialists and its highly qualified leaders – shows that, with the right blend of knowledge, credibility, and will, the changes proposed in this paper are not only possible, but well within reach, perhaps even sooner than the 2020 date proposed by ASCO.