Hospice and Palliative Care:
A Parting of the Ways or a Path to the Future?
Journal of Palliative Medicine, Volume 1, Number 2, pp.165-176, 1998.
Ira R. Byock, M.D.
Palliative Care Service, Practical Ethics Center, University of Montana
Missoula, Montana

Within the bustling, burgeoning field of end-of-life care, a controversy is brewing. At present it is only apparent -- and of any interest -- to those of us who work in hospice or palliative care. But as it percolates through the field, it is becoming hotter and more bitter with passing days. The manner in which this controversy evolves and is resolved holds far-reaching implications for the quality of care that people with chronic, life-limiting illness will receive. Unchecked, it could spill over, indelibly staining our generation's response to the infirm and elderly, adversely affecting the manner in which millions of people will live out their lives.

What do we call it? Why is it happening now?

The controversy is difficult to label, and is being asked within variety of contexts regarding a wide range of specific issues, but is often simplistically expressed as a choice between hospice and palliative care.¹ The debate revolves around semantics and would initially seem of dubious interest to anybody other than those wonks among us who devote large portions of our clinical lives to end-of-life care and who study, teach and write about it.

The timing of an internecine squabble within the field of end-of-life care might also seem odd. Caring for people as they die is finally garnering the attention it deserves. Called to action by studies documenting deficiencies in care², the Institute of Medicine report, "Approaching Death"³, the HIV epidemic, the groundswell of support for legalized PAS, and, most of all, by the aging of the baby boomers (who are now caring for their aging grandparents and parents,) the field has been re-energized. Hospice and palliative care programs are expanding, and the soaring number of mergers and acquisitions attest to an infusion of capital into the field. Clinical and administrative innovation abounds within acute and long term care, home health and hospice.

By any measure, efforts to improve care for the incurably ill and dying has never been more alive and well. A revitalized end-of-life care movement finally has the attention of the leadership of health care and public policy, and the opportunity to effect change as never before. Ironically, for many, the acceptance and embrace by the establishment of medicine is the source of concern.

I suggest the controversy has been misframed. Rather than being a conflict between hospice and palliative care, this controversy actually represents a tug of war between the loyalists and progressives in the field of end-of-life care.

It is true that "loyalists" typically tend to be ardent hospice supporters, particularly those who have been involved in the early "hospice movement." "Progressives" tend to be caring, committed clinicians and administrators, often based in hospitals, nursing homes or home health, who have awakened to the need to improve care for the dying in their own systems and are earnestly trying to do just that. The loyalists view the emergence of new players in this field as threatening to usurp and dilute end-of-life care. The progressives frequently complain that hospice programs and admission criteria are too rigid and ill-fit the needs of many dying patients who deserve better care.

Which side are you on?

Which-side-are-you-on questions and value-laden insinuations are the way many of us first become aware of this political mine field. If the issues raised are skirted, the suspicion and anger they represent will inhibit the real growth and maturity that is now possible within the field.

I address this topic as part loyalist and part progressive, and have been alternately criticized and embraced by both camps. I have been involved in hospice care since the late 1970's, and my enthusiasm for hospice has never waned. Yet, in recognizing the limitations of how hospice is currently constituted in America, I am now actively working to develop new models for delivering comprehensive care to all people who are living with progressive, life-limiting illness. In trying to make sense of the loyalist-progressive controversy swirling around hospice, palliative care and end-of-life care, I began by asking myself two basic questions: What are the fundamental goals of the end-of-life care movement? What would success look like? These two inquiries probe the very core of our collective efforts to improve end-of-life care. The answers we give frame the field of end-of-life care.

Of course, no one person can speak for a movement. From my perspective, the goal of the hospice movement of the 1970's and 80's was to achieve universal access to end-of-life care that was ethically sound, medically competent, comprehensive, as well as genuinely compassionate and life-affirming. Our dream was to offer care to all dying persons and their families, regardless of age, diagnosis, ethnicity or socio-economic status. Now, in the midst of the dramatic increase in efforts to improve end-of-life care, ironically, many of us feel that this dream is imperiled.

What do you mean when you say palliative care?

The loyalists often ask this question in less direct, and less polite ways, inferring that anyone who does not "do hospice" is promoting an ersatz brand of end-of-life care. However, the question of what the term "palliative care" refers to points to the heart of this controversy. Indeed, it is not an exaggeration to state that success or failure to realize that dream may ultimately turn on the precise manner in which palliative care is defined. The World Health Organization definition of palliative care will be familiar to all those who write and teach about care for the dying:

The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of illness in conjunction with anticancer treatment."⁴

In the 1993 Standards of a Hospice Program of Care ⁵, the National Hospice Organization used the term, palliative care, to refer to "treatment that enhances comfort, and improves the quality of the patient's life. No specific therapy is excluded from consideration. The test of palliative treatment lies in the agreement by the patient, the physician, the primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, easing of pain, and enhancement of quality of life."

Recently leaders in end-of-life care developed a set of precepts for palliative care. under the auspices of the Robert Wood Johnson Foundation's Last Acts Campaign:

"Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual and existential needs of patients, in particular those with incurable, progressive illnesses. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms and restoration of functional capacity while remaining sensitive to personal, cultural and religious values, beliefs and practices."⁶

What then is hospice care? How are hospice and palliative care different and how does one relate to the other?

The word "hospice", as it is currently used in the United States refers to a specific, programmatic model for delivering palliative care. Hospice care, therefore, constitutes a subset of palliative care.

In the U.S., hospices have characteristically been organized as discrete programs that assumed case management responsibilities for all care related to a person's advanced, life-limiting illness; including support for the family through the dying experience and during their bereavement. Hospice programs coordinate care through an interdisciplinary team and directly provide "core services" under a variety of administrative and ownership structures. Hospices may be fully independent corporate entities, semi-autonomous subsidiaries of integrated systems, or departments of medical centers. While hospices have traditionally been non-profit, community-based organizations, there has been a significant proliferation of for-profit hospice corporations, operating in multiple sites.

It is my opinion that in the evolving history of end-of-life care, hospice has and will continue to represent the epitome of palliative care. By demonstrating clinically achievable improvements in quality of life for dying patients and comprehensive support for families in their care giving and their grief, the best hospice programs have provided "benchmarks" toward which the discipline can aim. As the field is embraced and becomes part of the main stream health care system, hospice is one of several delivery models to explore, but it also offers a gold standard against which to gauge success in end-of-life care.

LOYALIST: If you admit that hospice is the "gold standard," how can you say we need something else? Isn't the answer to the problem, more hospice?

Well, it is part of the answer. We certainly should expand access to hospice. At present, hospice serves only 17-20% of Americans in their dying and serves them for a decreasing length of time.⁷ Median hospice lengths of stay have fallen to between 2 and 3 weeks in programs across the country. Moreover, demographic data suggests that hospice in the United States is still primarily serving adult Caucasians with advanced cancer. Those under served by hospice include: persons of color; non-English speaking people; those who reside in inner cities or in isolated rural areas; those who are living with far advanced pulmonary disease, liver disease, renal failure, heart failure, or dementia; and those with dual diagnoses that include addictions, developmental disability or serious mental illness. Furthermore, whether hospice is involved or not, care for dying people must improve in acute care settings -- including adult and pediatric ICU's and in long term care facilities.

In order to reach the many people who would benefit from services that hospice represents, creativity and flexibility in program form and delivery strategies will be required. If excellence in end-of-life care is our goal, we must also admit that not all hospice care is equal, and not all of it is good. In addition to expanding programs and access, we must measure and continually improve the quality of care.

As good as hospice is, it can not accomplish these tasks alone. A base of clinically strong hospice programs is essential for systems innovation. Hospices can and should take an active role in improving care for the dying in other settings both directly, through planning and on-going consultation, and indirectly, by setting high institutional and regional expectations for care.

PROGRESSIVE: Why do the hospice "loyalists" worry so much? Palliative medicine is now a full specialty in Britain and hospice there is as strong as ever.

Like the hospice movement itself, the current controversy in America has a precedent in the experience of the United Kingdom. In a 1992 editorial in the British Medical Journal, Scottish geriatrician and novelist, Colin Douglas, created an uproar in the U.K. hospice community by asking, "Why should care at the end of an illness be so separate from all that has gone before? Why should only the minority who die of malignancies - and precious few even of them - be singled out for de luxe dying?"⁸

He declared, "The hospice movement is now just another player in the ever more crowded health sector of the pity market... In its time the hospice movement served several useful functions; as a brave new cause when standards of terminal care were broadly lamentable; as a base for the development of nursing skills and service innovations such as home care for the dying; and as a first home for that useful scientific, clinical, and educational endeavor, the specialty of palliative care. Well done, thanks, and goodbye... The hospice movement is too good to be true and too small to be useful. For three decades it has traded successfully on voluntarism and the fear of dying badly. Its bluff is about to be called."⁹

I suspect these words express the unspoken opinion of more than a few leaders of academic and corporate health care in America. The sentiments are not all malicious; mostly they reflect a felt urgency to do something to improve care and frustration with the limitations of hospice. To the extent that the expansion of palliative care advances "authentic" palliative care, the loyalists should have no reason to worry. However, unless the definition of palliative medicine is strictly adhered to, the threat is real.

The terms, "palliative medicine" and "palliative care" are often used interchangeably. Increasingly, "palliative medicine" is being chosen to refer to those aspects of palliative care that fall within the purview of physicians' practices. When palliative medicine was accorded recognition as a medical specialty in Great Britain in 1989, the following definition was used, "Palliative medicine is the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life.".⁹ Such clear articulation of the scope and comprehensive goals of care have been helpful in cooling the loyalists' worries in Britain.

PROGRESSIVE: You were right, this is just a matter of semantics. Why does it matter whether someone gets care through a hospice or a palliative care service?

In fact, the issues do turn on questions of semantics, but their impact is extremely serious. At present in America, the term "palliative care" is often being used to consciously refer to an alternative to "hospice". Exactly what it does refer to varies from one place to another and is often unclear. In one hospital, the palliative care service may be identical to hospice, while in another medical center it may be a team comprised of a part time anesthesiologist and a nurse and a social worker, and in yet another, it may be a consult service run by a single, advance practice nurse. During the last three years, pre-existing pain services in medical centers throughout the country have been relabeled palliative care services. Many new palliative care programs are not comprised of interdisciplinary teams. Nor do most new palliative care programs genuinely incorporate goals that extend beyond relief of physical suffering and, perhaps, assistance with medical decision making.

It may seem awkward, even petty, to complain. All of these new programs do improve care. Some, however, also compete with existing full-service hospice programs. As helpful as these "hospice lite" programs are in comparison to no program at all, they simply do not represent authentic palliative care. Skillful symptom management, advance care planning and adherence to patients' stated preferences constitute competent, ethical medical practice. Conversely, failure to provide skillful symptom management and to practice ethical decision making represents medical negligence. The correction of existing problems is desirable, but referring to such remediation as "palliative care" effectively lowers established practice standards.

These concerns also have precedent in the recent experience of the United Kingdom. Professor Derek Doyle reminded the field of its principles and challenged providers of palliative care to look beyond the physical and psycho social.

"We are not, nor must we ever allow ourselves to become, merely symptomatologists. We are committed to reaffirming life not sanitizing death. We are, in the presence of death, working toward health - that balance of body, mind, and spirit that is so much more than freedom from disease. For that reason I believe we have no choice but to be alert to and responsive to human spiritual needs."¹⁰

Irish palliative medicine physician Michael Kearney observed that palliative medicine was in danger of being redefined and constrained:

"It is proposed that while there is an abusive and useless dimension to illness, pain and suffering which needs to be removed if at all possible, there is also potential in such experience (no matter how unpleasant that experience is). In terms of our earlier metaphor it is as though the dragon (that is the patient's distress) also guards a treasure - something essential for that particular individual's healing at that moment in time. It is suggested that if we in palliative medicine fail to accept this view, a view which allows that there may also be a potential in the suffering of the dying process, if we sell out completely to the literalism of the medical model with its view that such suffering is only a problem, we will be in danger of following a pattern which could significantly limit our scope for development and lead to our becoming 'symptomatologists', within just another specialty.¹¹

Principles of Palliative Care

Within the definitions of palliative care of the World Health Organization and National Hospice Organization, and within the Last Acts Precepts, sentinel aspects of palliative care can be identified:

Improving "quality of life" for the person and family is a specified goal.

This dimension of practice extends beyond the symptom management and ethical practice, to reach emotional, social and spiritual realms of the person's and family's experience.^12-15

These definitions and precepts also specify that dying is an inevitable and normal part of life for the individual and family, an attitude that underpins what is sometimes referred to as "the hospice philosophy." Indeed, this attribute of palliative care contrasts with the prevailing culture of general medicine which primarily approaches dying as a problem to be solved or forestalled.

Although normal, dying is inherently difficult. The experience of living with progressive illness impacts every dimension of a person's life: physical, social, emotional and spiritual. The relatives and close friends who comprise a patient's self-defined "family" are inevitably affected by their loved one's illness and impending death. Palliative care responds to the dying person with his or her family, through an interdisciplinary team that recognizes the many dimensions of personal experience and need. Decision making, care planning and proposed interventions consider the impact on the family as well as the patient, and support for the family continues into the period of bereavement.

Relief of physical distress is the first priority

Symptom management requires a well-organized, on-going approach that is careful, comprehensive and, when necessary, intensive. Pain is a cardinal symptom associated with late-stages of cancer, HIV disease and progressively crippling diseases. Symptoms of dyspnea, nausea, profound weakness and delirium are also common sources of physical distress among dying patients and deserve thorough attention.¹⁶In service of comfort, no therapy is excluded from palliative care. Consultation and interventions from specialists in medical and radiation oncology, anesthesiology, neurology, surgery and neurosurgery are all commonly utilized within the team process.

In different ways and using a variety of words, the formal principles and precepts of palliative care all recognize that the "inner life" of the person has profound importance during this final transition. Beyond relief of physical suffering, an anticipated dying (in contrast to a sudden death) offers opportunities to identify "what matters most" and "what would be left undone" if death occurred today. Many people welcome the chance to work toward a sense of completion of personal affairs and of relationships and to develop a sense of life closure.

PROGRESSIVE: What do you think about the new ICD-9 code? As a precursor to a CPT code for palliative care, this is one way in which palliative care is addressing the financial barriers and constraints of hospice.

This assertion makes the loyalist within me fidget. The ICD-9 code ¹⁷ is an attempt to build a data base of the procedures and costs associated with palliative care. The purpose is to construct a set of Diagnosis Related Groups (DRG) or similarly defined payment structure by which to reimburse physicians, hospitals and health care systems for the provision of palliative care. The goal is worthy, but the methodology causes concern. Here again, the problem lies in the definition of terms, or in this case, the absence of definition.

In the introduction of this ICD-9 code at no time was a careful explication of palliative care given. The "V code" is being assigned to cases in which the person is not expected to survive and has a do-not-resuscitate (DNR) order on the chart, regardless of the services provided, the stated goals of care, or whether any clear plan of care even exists. Tacitly, in building this database, palliative care is being defined by what it is not. Rather than contributing to an improved model of care for patients with advanced, incurable illness, the evidence developed through the ICD-9 code may well reflect the status quo, and the resultant payment system may inadvertently reinforce it.

To the extent that palliative care holds a fiscal advantage to patients over hospice, it may derive from avoiding existing limitations of the Medicare Hospice Benefit; perhaps by enabling high-tech interventions to be reimbursed through routine Medicare and Medicaid. But to the extent that total costs of palliative care are actually less than hospice care, we are right to worry that the fiscal advantage to the system may derive from providing fewer services or services of lesser quality.

PROGRESSIVE: There are too many rules, written and unwritten, about who is "appropriate for hospice." We need an alternative that does not force people to give up therapies that they want now or might benefit from later.

We certainly need something. During the decade of the 1990's, hospice programs tended to be fiscally conservative. Both admission criteria and the services offered were increasingly determined by stop-loss strategies and reimbursement requirements imposed by regulatory interpretations of the Medicare Hospice Benefit. Patients who want to be hospitalized or who still want cardio-pulmonary resuscitation (CPR) efforts performed, people who want to wait and see about another round of chemotherapy, as well as people who simply live alone, all may find it hard to receive hospice care, despite the fact that they are dying. Although the Patient Self-determination Act made it illegal to deny a patient admission to hospice because he or she hasn't agreed to a DNR order, discharge planners everywhere know that the DNR order is essentially required for acceptance by a hospice program.

Patients with chronic relapsing conditions such as emphysema and congestive heart failure continue to be under served by hospice. This is partly due to inherent prognostic difficulty and consequent reluctance to refer patients whose baseline condition may be slowly, almost imperceptibly, declining. However this reluctance to refer by doctors and discharge planners finds reinforcement in hospice programs' reluctance to admit those patients who are likely to utilize expensive emergency services and acute hospitalizations. Patients with pulmonary and cardiac disease may warrant potentially life-prolonging treatment of exacerbations until the very day they die, however, they also deserve access to palliative care as much as patients with late stage cancer. In fact, the clinical factors that have made cancer patients more likely to fit the hospice model of palliative care are becoming less generalizable or relevant in the face of improvements in cancer care. Carefully selected patients with far advanced neoplasia may benefit in terms of physical comfort and quality of life from chemotherapy or radiation therapies that are also life-prolonging.

The NHO statement cited specifies that no treatment is excluded from palliative care.¹⁸ Under this definition, strictly applied, hospice programs that do not offer interventions such as chemotherapy for bowel obstruction in ovarian carcinoma or radiation therapy for painful bone metastasises are practicing a spurious version of palliative care.

There is no disloyalty in calling attention to the current discrepancy within hospice between what is paid for and what is needed. Before beginning work on solutions to a problem, the problem must be confronted. Claiming that the use of certain therapies, “is not hospice,” skirts the issue, adds to the confusion between precepts of practice and payment, and results in a corruption of palliative care. American hospice programs underutilize valuable, but prohibitively expensive treatments. Radiation therapy for painful bone metastasises, nerve block and neurosurgical procedures, and exorbitantly priced drugs, such as hematopoietic colony stimulating factors and serotonin receptor antagonist antiemetic agents are often avoided for primarily financial reasons.

In defense of “the hospice industry”, current regulations make it very difficult to do the right thing. Bridge programs that would serve patients with a full complement of hospice services while billing only for skilled nursing visits, have been deemed illegal.¹⁸ 1Withholding potentially beneficial treatments is no more morally acceptable in hospice than in managed care. However, hospice administrators daily face the fact that accepting financial risk for patients who require extremely expensive interventions can threaten their program’s survival. Especially for rural, or otherwise small, hospice programs that lack a large daily census across which to spread risk, even one or two inordinately costly cases can cause a financial crisis.

The risks for hospice programs are many. Not only may the costs of such care far exceed the per diem and any available reimbursement, but a patient’s unexpected longevity can trigger a case audit and claim denial under Focused Medical Review rather than being acknowledged as a mark of success.. Worse still, under Operation Restore Trust, such cases can expose the program to allegations of fraud and abuse, putting the organization at risk of paying massive refunds and stiff fines..^19-20 Faced with the real possibility of extinction, what is a hospice organization ethically bound to do?

The answer is still being written. Progressive hospice organizations across the country are developing ways to confront the barriers to hospice care. Examples now exist of programs that say “Yes” to patients who need high-tech, high-cost interventions, “Yes” to those whose conditions do not fit the Medicare Hospice Benefit model, “Yes” to those who are still unable to fully accept that they are dying and, “Yes” to patients without care givers. Through a mixture of creativity and commitment, leading programs are reaching out to these patients, within the law and within budget -- although those budgets necessarily include continuing significant community support. While regulatory relief is sorely needed and overdue, , it is still the mission, not the margin, that matters.

We loyalists who have been in hospice since the years B.C. (before compensation) should reflect on what we did before the Medicare Hospice Benefit existed. Hospice was a movement and its members were both patient advocates and social activists. If the loyalists’ commitment to care for the dying has not diminished, perhaps it is now time for us again to become a movement.

I suggest that when palliative treatments are needed and cannot be paid for by patients, their health-care insurance, or Medicare, it is our responsibility to go to our boards of directors and our communities for the financial support our programs need. Ultimately, durable solutions will entail substantive regulatory reform and legislation that addresses the limitations of the current hospice payment system. If American society is going to provide a real choice between suffering on the one hand and suicide on the other, insufficient finances must not constrain our efforts to comfort people confronting life’s end.

PROGRESSIVE: Hospice is solely focused on the end of life. Doesn’t palliative care offer a way to reach patients needing expert symptom management and psycho social care earlier in the course of illness?

Presently the urgent need for comprehensive palliative care is most apparent among patients whose disease is far-advanced. Yet, essential elements of palliative care, most particularly symptom management, should be available early in the course of any chronic or progressive illness. The Canadian Palliative Care Association’s monograph, Palliative Care: Towards Standardized Principles of Practice, addresses this point well, “Palliative care may be combined with therapies aimed at reducing or curing the illness, or it may be the total focus of care.”.²¹ The principle of proportionality, which entails weighing the potential benefits of an available intervention against the risks, underlies the process of care planning and decision making. The values and self-defined goals of the person as well as the person’s current, subjective quality of life form the fulcrum for this ongoing decision-making process. As a patient’s disease advances and there is proportionately less that medicine can offer in terms of life-prolongation, it is both rational and often inevitable for the focus of care to progressively shift toward the goals of comfort and quality of life.

However, some life prolonging treatments may remain desired and appropriate during even the last weeks or days of a person’s life. Here, too, the potential benefits of a therapy must be weighed against the “costs” in terms of potential discomfort, diminished quality of life and blocked personal goals. A patient with advanced cardiac failure, pulmonary insufficiency or motor neuron disease who, despite severe functional compromise, derives positive value from her present quality of life might request antibiotics by mouth (or gastrostomy tube) in the event of a future pneumonia, while thoughtfully declining intravenous antibiotics or future hospitalization. Similarly, and without incongruity, the patient may knowingly accept (or request) a “flu shot” recognizing that this life-prolonging measure carries minimal risk in terms of discomfort or life-shortening complications..²²

PROGRESSIVE: People with progressive illness often resist admission to hospice programs. Wouldn’t a palliative care service be more palatable to patients?

Patients often resist hospice care because it means to them that they are “dying”. Likewise, at times, physicians are reluctant to refer patients who, they feel, would interpret the suggestion of hospice care as an indication that the doctor is “giving up.”

In response to the resistance to accept hospice on the part of patients and their physicians, in addition to “palliative care”, a variety of terms have sprung into use: comfort care, supportive care and special care, to name just a few. To the extent these terms connote a comprehensive level of care, on a par with hospice, while increasing patient and family acceptance, they are most welcome. To the extent that the increased acceptance derives from vaguely obscure nature of the title, it can be expected to be short-lived. Whatever the program is called, eventually (and at least partly as a result of the education and marketing required to build referrals) the focus of care will be recognized and the new term will likely fall prey to the same death anxiety and denial that currently plagues the word “hospice.”

PROGRESSIVE: The hospice version of palliative care seems too rigid. Some patients really only need -- or want -- the services of a doctor or nurse to manage symptoms. Isn’t this also a valid form of palliative care?

The premise of the assertion is true, some patients really only need or want discrete component services of the hospice (or palliative care team). Particularly during an earlier stage in the course of a progressive, life-limiting illness, the full services of a team may not be warranted. For some patients (and their families,) symptom management remains all that is desired or required. The definition of palliative care within the 1995 Canadian Palliative Care Association’s Standards monograph addresses this issue.

“While many service providers may be able to deliver some of the therapies that provide comfort and support, the services of a specialized palliative care program may be required as the degree of distress, discomfort and dysfunction increases.²³

Palliative care remains, by definition, an interdisciplinary team approach to care. In being clear and precise about these terms, we are better able to tolerate flexibility in everyday usage of the term, doing so with neither confusion, nor contradiction. Referring to an evaluation by a sole physician or advanced practice nurse as a “palliative care consultation” may not be exactly right, but it is also not significantly wrong. The reference does not redefine “palliative care”, any more than referring to a sand lot game of “baseball” sweeps away the applicable rules and regulations that historically and formally define the game. If, however, an institution’s formal “palliative care service” consists only of a single, or two, disciplines, I believe it is inappropriately named.

LOYALIST: It is naive to be too flexible. For instance, within managed care there are financial incentives for offering as few services as possible. Without the “carve out” of the Medicare Hospice Benefit, what would be the chances of managed care organizations providing comprehensive palliative care?

Here again, the concern is well placed, but a protectionistic strategy is destined to fail. At the present time within managed care, the “carve out” to the Medicare Hospice Benefit of eligible patients is a critical means of ensuring that comprehensive care is available to dying patients and families. It would be dangerous to eliminate it anytime soon. “Carving in” hospice would result in an adjusted capitated payment to the managed care plan that included compensation for palliative care, but would be minimally higher than current per-member, per-month Medicare payment to the plan. Under this set of circumstances, there would be significant financial pressures to cut costs and limit expensive, comprehensive services, such as hospice.

Although the dangers need to be acknowledged, the positive potential of various prospective payment systems lies in the incentive to improve efficiency and provide genuine continuity of care. A health maintenance organization in which palliative care is fully integrated can facilitate the transition between life-prolonging and palliative phases of care, perhaps obviating the often abrupt, difficult choice patients are now forced to make care. While it is possible to accomplish such operational integration by skillful use of the carve out -- and this is one avenue that needs to be employed -- managed care organizations ultimately should be administratively and clinically responsible for all aspects of a person’s care.

Hospice as a discipline has always strived to become fully integrated within the broader health care system. It would seem disingenuous and protectionistic to categorically oppose such an eventual integration. When the history of health care surrounding the turn of the 21st century is written, whether delivering end-of-life care within an integrated system of managed care is a good thing or a bad thing, will turn on issues of quality. If in incorporating palliative care within managed care systems, hospice is “unbundled” and end-of-life care is reduced to skilled nursing visits, it will have been a bad thing. If, however, documented patient and family-centered outcomes that are indicative of best practices in hospice care can be achieved, loyalists should acknowledge success.

In every industry, in the long run, good quality is good business. As the industry of managed care matures, the frequent shifts of risk pools from one health plan to another and the discrepancies in pricing between rival companies will both diminish. There is reason to think -- and hope -- that competition will progressively shift from cost to quality. We must do more than merely hope.

Getting there from here: A strategic path out of the quagmire

Whether the options being discussed involve managed care, case management, disease management, PACE (Program for All-inclusive Care of Elderly) Medicare Risk or Medicaring, the real question is, how well will patients and families be served by the program? The benchmark for comparison of outcomes must be those set by the nation’s leading hospice programs rather than historical experience of the patient population. The challenge is to set strong, clear standards for quality and to ensure that health plans, institutions and clinicians adhere to them.

The strategy for resolving this controversy is conceptually straightforward. It starts with clear definitions of terms, followed by principles, precepts and standards of practice that reflect the full scope, vision and goals of the field. Formal documents, such as the National Hospice Organization’s “A Pathway for Patients and Families Facing Terminal Illness” monograph²⁴, and the previously cited NHO Standards⁵, Canadian Palliative Care Association Standards ²¹ and Last Acts Precepts⁶, enable identification of benchmark processes and outcomes of care that reflect empirical “best practices” within the disciplines. Measurement that is meaningful, practical and methodologically sound comprises the next step. Adherence to standards requires a means of evaluating both key processes of care delivery as well as the outcomes of care that are relevant to clinicians, but also to the patients and families served.

The importance of measures of quality to this strategic framework for change can not be overemphasized. Quality improvement efforts, quality comparison and bureaucratic processes of accountability are all dependent on measurement that is meaningful and practical. As refinement and reliability of quality indicators increases, they become critical tools for clinical and system-based research and form the basis for data-driven improvements in the delivery of health care.

The American Geriatrics Society’s Ethics Committee has identified ten domains of quality for end-of-life care that earned the endorsement of forty professional associations.²⁵ (see Table 1). These domains encompass acknowledged standards of hospice and palliative care. These provide essential guidance to the institutions and agencies responsible for oversight, accreditation and certification of individual clinicians and health care programs.

Once we can define, explicate and evaluate the quality of palliative care, it is essential that we communicate the information to the various professional “consumers” of care: referring physicians, employee health benefit managers, and contracting health plans, as well as the “end users” of care, the patients and families we seek to serve. Not only do all these consumers need and deserve the ability to distinguish excellent from merely adequate palliative care, their ability to do so is imperative within the strategic framework for improvement. From a policy perspective, the public is the ultimate agent of accountability. “Health care report cards” and similar vehicles are key to providing people with the information they need to take responsible action in the care of themselves and their families, rewarding better providers of care with their business and complaining loudly when reasonable expectations are not met.

Politically, this strategy can unite the loyalists with the progressives, or more precisely, to help us see that we are already united. The real opposition in this controversy will be revealed. The real “con” side in this controversy comes in two forms: On one extreme are the “pseudo-progressives” who verbalized support for palliative care only to the extent that it is less sentimental, less comprehensive and less costly than hospice. On the other are the “pseudo-loyalists” who oppose palliative care because it threatens the market share of their hospice program. They, too, have much in common, a shared commitment to margin over mission.

Once the standards are promulgated and accepted and reliable measurement tools are in place, loyalists will have a basis for confidence in the future. Progressive innovation in clinical and programmatic realms can proceed with the support of us all, within a context in which the outcomes of care can be monitored against established best practices.

There is much work to do. At the research bench, the bedsides, in the board rooms, the lecture halls, and in the halls of Congress our words and actions must consistently reflect the highest standards of clinical excellence . From the perspective of health planning and policy, success would be a three tiered system of palliative care that is consistent with the original vision and goals of the hospice movement. First, there must be a level of basic competence with palliation and end-of-life care within the general health care system. Second, we must ensure universal access to specialized palliative care, whether or not the program providing care is licensed as a hospice. And third, we need identified regional centers of excellence in palliative care. These tertiary centers will be available to accept referral of the most difficult cases, conduct ongoing specialty training for advanced practice nurses, residents and fellows and engage in basic and advanced clinical research.

The expansion of palliative care programs need not signal the end of hospice. Even in places where well-developed institutional-based palliative care programs and excellent home health programs exist, at a minimum, hospice programs will be needed to provide specialized home care for patients with complex problems or families requiring specialized support. Distinct from the direct delivery of palliative care, every community would benefit from organized efforts of public education and engagement that call attention to the special needs and qualities of life’s end and advance the values of life completion and life closure. This, too, is an important, enduring role for hospice organizations.

Conclusion

Applying a strategic framework that proceeds from definitions, standards and precepts of palliative care and utilizes carefully chosen measurement tools within continuous quality improvement and accountability, offers a way to successfully resolve the controversy about hospice versus palliative care. Rather than a parting of the ways, authentic progressives and loyal supporters of hospice care can build a future in which no one is left to die with their pain unaddressed, in which relative comfort is insured and persons’ opportunities to grow are preserved through the very end of life. Working together we can insure that wherever people are treated -- whether in hospice and palliative care programs -- they will be able to feel wanted, worthy and dignified despite their terminal frailty and physical dependence.

Table 1
Domains of Quality of End-of-life Care
(from the American Geriatrics Society).²⁵
· Physical and emotional symptoms
· Support of function and autonomy
· Advance care planning
· Aggressive care near death -- site of death, CPR, and hospitalization
· Patient and family satisfaction
· Global quality of life
· Family burden
· Survival time
· Provider continuity and skill
· Bereavement

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Hospice and Palliative Care:
A Parting of the Ways or a Path to the Future?
Journal of Palliative Medicine, Volume1, Number 2, pp.165-176, 1998.
Ira R. Byock, M.D.

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