Cancer care extends from diagnosis through the late stages of incurable illness as patients confront dying and their families cope with caregiving and grief. Palliative care is a rapidly developing area of clinical focus that offers valuable services to patients in terms of symptom management and adjustment to illness, including issues of life completion and life closure. Elements of palliative care are appropriate early in the course of illness. As disease progresses, physical comfort and enhancing quality of life increasingly become predominant goals of cancer care. Specialized palliative care programs, epitomized by hospice, are invaluable resources for patients with far-advanced illness and their families. Current regulations and prevailing payment structures limit access to and the scope of hospice services and highlight the need for innovative models of delivering and financing palliative care.


Introduction

Clinicians working in oncology routinely encounter patients whose illness progresses despite intensive efforts to extend life. While there have been important advances in cancer care over the past several decades, and recent remarkable progress in treating a few specific neoplasms, approximately half of all current cancer patients will eventually die as a consequence of their illness or related complications. Caring for people as they die is, therefore, an integral part of oncology practice.

During the latter half of the 1990's a series of studies documenting serious deficiencies in symptomatic care of patients with far advanced illness and the public debate over legalization of physician-assisted suicide have dramatically raised professional and public awareness of the urgent need to improve care for dying persons.

Physicians have cared for dying patients from earliest antiquity. Given the sophistication of contemporary medicine, it seems ironic that this core clinical responsibility has never been more difficult for physicians to discharge than it is today. In part the current perplexities of caring for people as they die derive from the dramatic advances in curative and remissive treatments. Illnesses, such as cancer, that would have quickly ended life as recently as the first part of the 20th century can now be well treated and, even those which cannot be cured, are often satisfactorily managed for years. The phenomenon of chronic illness with an associated prolonged period of decline is now a prevalent trajectory of dying. Indeed, a large majority of people living today can anticipate dying at an advanced age, from consequences of a disease with which they have lived for months to a number of years. ⁽¹⁾

In the report of its comprehensive study of the state of end-of-life care in America, the Institute of Medicine concluded that serious deficiencies exist in clinical practice, in professional training and the resulting attitudes and assumptions of professional caregivers. The study also noted inadequacies in the existing scientific evidence base for palliative care and acknowledged obstacles that diminish access to and quality of end-of-life care arising from existing health care policy and financing and modes of health care delivery. ⁽²⁾ [Table 1] The Institute of Medicine’s report concludes by issuing a set of recommendations that respond to these deficiencies. [Table 2]

Consistent with the Institute of Medicine’s recommendations, the American Society of Clinical Oncology (ASCO) recently approved a statement of policy and principle entitled, Cancer Care During the Last Phase of Life. This important document repeatedly emphasizes the multidimensional nature of the illness experience and stresses the importance of continuity as principle of cancer care.
“The American Society of Clinical Oncology believes that it is the oncologists’ responsibility to care for their patients in a continuum that extends from the moment of diagnosis throughout the course of the illness. In addition to appropriate anticancer treatment, this includes symptom control and psychosocial support during all phases of care, including those during the last phase of life.” ⁽³⁾

This clear statement calls to mind the anonymous adage from the Middle Ages, “To Cure Sometimes, To Relieve Often, To Comfort Always,” which succinctly and powerfully conveys the essential principles of the clinician’s role. ⁽⁴⁾

Caring for patients as they die

The principal responsibilities of physicians to dying patients are straightforward. Symptom management is a primary responsibility. The nature of being mortal guarantees that there will come a time in each patient’s life when death will prevail. Medicine can not always prolong life, but contemporary knowledge and medical skills can assure people of being protected from extremes of physical distress. In far-advanced illness, when cure is no longer possible and extensions of life increasingly difficult to achieve, relief of physical distress becomes the highest priority. Pain is cardinal symptom associated with advanced cancer. In common discussion the word “pain” often is used to symbolizes a range of symptoms, such as dyspnea, fatigue, confusion, nausea, tenesmus, dizziness, and itching all of which can cause suffering among dying patients. Emotional symptoms such as anxiety and depression are also all-too-common sources of suffering.

Satisfactory control of symptoms can usually be achieved through a direct, organized approach to patient. When feasible, treatment is directed at ameliorating the pathophysiology of illness. Additionally, analgesics and analgesic adjuvants can diminish the experience of nociception. ^{(5) (6)} While elimination of all discomfort arising from extensive, multi-system illness may not be possible, through assiduous evaluation, attention to detail, careful explanation and continuous monitoring of progress, physical distress among dying patients can always be alleviated. ^{(7) (8)} Even in those rare situations in which extremes of pain, air hunger or agitation persist despite intensive, multi-modal interventions, the use of sedative medications can provide reliable relief of physical distress. Pharmacologic sedation can be employed pending interventions such as nerve blocks, surgical neurolysis, or fixation of long bone fractures. In situations in which death is imminent, sedative medications can be continued along with meticulous nursing care through the patient’s demise. ^{(9) (10) (11)}

While physical comfort is the first priority in treating a dying patient, it is not the only goal. Psychosocial and spiritual or existential distress are, of course, also common among dying persons and clearly demand a caring response. As articulated by the ASCO statement,
“The dying process creates a myriad of questions and concerns about the meaning of life. People confront and resolve these questions and concerns in their own ways, frequently but not exclusively through religious and philosophical beliefs. Increasingly, those who care for the dying find that spiritual and existential issues are central to the quality of patients’ lives as they near death.” ⁽³⁾

The American Society for Clinical Oncology repeatedly emphasizes hospice care as an important and underutilized, resource in its statement on caring during the last phase of life.

“ASCO believes that hospice is a widely available and excellent model for managing end-of-life care and should be better utilized... As the best available model of end-of-life care, hospice must be positioned as a valid, therapeutic alternative to continuing futile, disease-oriented therapies.” ⁽³⁾

What is hospice care and what role does it have in the care of cancer patients?

Hospice is hardly a new phenomenon. In this country the first hospice program was established in 1974. Currently over 3,000 licensed hospice programs exist, serving over 450,000 patients a year.

In the 1994 Standards of a Hospice Program of Care, the National Hospice Organization (NHO) defined hospice as a model for providing palliative care.
“Hospice offers palliative care to all terminally ill people and their families regardless of age, gender, nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary caregiver, or ability to pay.” ⁽¹²⁾

The statement continues by defining palliative care in terms of its goals.
“The National Hospice Organization defines palliative care as treatment that enhances comfort, and improves the quality of the patient's life.” ⁽¹²⁾

This characterization is consistent with a seminal World Health Organization technical report on cancer pain relief that defined palliative care as, “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.”⁽¹³⁾

As can be seen from the statements above, the goals of oncology and palliative care are well-aligned. Palliative care represents a valuable set of specialized services that complement ongoing physician-directed care aimed at disease-modification and comfort. Hospice has epitomized palliative care for patients with far-advanced illness. Hospice programs draw physicians, nurses and professionals from clinical social work, pastoral care, pharmacy, the supportive therapies (physical, occupational, respiratory and dietary) together with home health and bath aides into an interdisciplinary team dynamic and collaborative process of care. Each team member brings the perspective and expertise of his or her discipline, as well as their own unique personal and clinical experience, contributing their efforts and talents to the goals of comfort and improving the quality of the last phase of a cancer patient’s and family’s life.

Hospice programs also draw upon a pool trained and supervised volunteers to offer a myriad of mundane -- but essential -- services. Volunteers are available to help by preparing meals or mopping up a spill, by providing an hour’s respite to a caregiving spouse. Volunteers can offer a patient a ride to the store or a ride in the country. Finally and most basically, volunteers offer companionship. In the midst of the inherent loneliness and isolation of dying, hospice volunteers listen and bear witness to a person’s fears, disappointments and triumphs.

Beyond symptoms and suffering

While clinicians must attend to the multiple sources of discomfort and despair among the dying, the experience of living with progressive, life-limiting illness cannot be understood solely through a framework of suffering. Beyond the inevitable problems of terminal illness, this waning phase of life also encompasses opportunities for life review, life completion and meaningful closure that can profoundly enrich the quality of the person’s remaining days — and affect the lives of family members for many years to come. ⁽¹⁴⁾

In comparison to a sudden death, dying of progressive illness offers a chance to define for oneself “What would be left undone?” if death occurred suddenly, and to do what is necessary to put one’s affairs in order. There is an opportunity within an anticipated dying for people to reconcile previously strained relationships and a chance, once again, to tell ones treasured stories. For families there is an opportunity to listen, perhaps for one last time, and to affirm for the person the value of his or her stories and life. As the activities and responsibilities of busy life fall away during progressive physical and functional decline and as life’s end looms ever closer, it is common for people to explore questions of ultimate meaning. Issues surrounding the existential dimensions of life and death are not only sources of suffering. In exploring the place of human beings in the universe and questions related to the existence of a caring god or the existence of an afterlife many people find spiritual comfort and strength. Matters of this nature are on the minds of many seriously ill patients. In striving to support people in this realm of life, the clinician’s role is not to provide answers, rather it is to listen and help people in finding their own answers. Here too, hospice teams can off a valuable service.

One of the precepts of palliative care is in considering dying to be a normal stage in the life of individuals and families. ^(12)(15) A developmental approach to this stage of life offers a framework from which clinicians can assist people in identifying ways of working toward a self-determined sense of completion in personal, interpersonal and spiritual realms of life. ⁽¹⁴⁾ Within this framework, sources of emotional and spiritual distress can be explored and care planning can incorporate an focused response without the experience of the patient or family requiring a diagnosis or psychosocial pathology.

An important monograph from the Standards and Accreditation Committee of the National Hospice Organization outlines a “treat, prevent, promote” intervention strategy. In approaching a dying person and family the most immediate responsibility is to treat immediate sources of suffering; physical, emotional, social or spiritual problems with which the a patient and family present. Next the team focuses on preventing foreseeable problems and complications. The palliative plans of care also attend to promoting opportunities for patients and families to grow, individually and together, during this final stage of life. ⁽¹⁶⁾

Improving access to hospice

The best hospice programs have collectively established benchmark practices and clinical outcomes against which other models of palliative care can be assessed. However, hospice has not been immune from problems of access, uneven quality and limitations of service imposed by financial constraints that plague our healthcare system.

As recognized by the Institute of Medicine report and the American Society of Clinical Oncology statement, currently hospice is an underutilized resource in the care of people with advanced, incurable illness. When the Medicare Hospice Benefit was adopted by Congress in 1982 an appropriate length of hospice service was anticipated to be in the range of 6 months. Recent data reveals that average lengths of stay are in the range of just 30 to 45 days and median lengths of service are as low as two weeks. ^{(17) (18)} Many physicians remain only minimally familiar with hospice services, and tend to under refer patients who with their families would benefit from the services hospice offers or refer very late, often just days before a patient’s death. Patient attitudes, fears and misconceptions heavily contribute to these referral and utilization patterns. Even when the far-advanced extent of illness is acknowledged and despite full disclosure of the risks of continued life-prolonging therapy, many patients actively resist a referral to hospice opting, instead, to purse aggressive disease-modifying treatment.

Oncologists often are in a critical position to assure people that hospice does not mean they will be abandoned. Physicians can give evidence of the continued importance of their relationship with the patient and the continued value of the patient’s life most basically by listening to peoples’ fears and sadness. It is appropriate for clinicians to express their own disappointment and sadness at the progression of illness and to emphasize their continued commitment to caring. . Within this context, hospice can be introduced as an expansion of resources and caring people and a higher level of support for themselves and their families.

Current limitations of hospice in America

Although in principle life-prolonging and palliative care should be well-integrated in a smooth continuum of care the current payment and delivery systems impose barriers to this goal. The Medicare Hospice Benefit and the companion Medicaid Hospice Benefit that exists in most states have fostered dramatic growth of hospice, it has limited the scope of hospice services and contributed to a fragmented system of care. ⁽¹⁸⁾ Federal oversight of the Medicare Hospice Benefit has focused on ferreting out fraud and abuse, through Focus Medical Review and through Operation Restore Trust, an investigation conducted by the Office of the Inspector General (OIG) of the Department of Health and Human Services. ^{(19) (20) (21)}

The OIG ultimately concluded that instances of frank abuse are rare and that, “Overall, the Medicare hospice program seems to be working as intended.” ⁽²²⁾ Nevertheless, Operation Restore Trust has had a constricting effect on patients’ access to hospice and, therefore, to palliative care. Commenting on the OIG final report, Karen Davie, President of NHO, expressed the dismayed perspective of the hospice programs in observing that, “The OIG’s intense scrutiny has had a chilling effect on appropriate referrals of terminally ill beneficiaries and resulted in gross under-utilization of hospice services.” ⁽²³⁾ But it is more than just a reluctance on the part of referring physicians. Many hospice programs, perceiving a threat of retroactive denial of payment or even stiff fines for having patients live too have become more selective in accepting patients. Programs may be reluctant to admit patients whose principal diagnosis is characterized by slow, progressive decline, despite serious disability (such as Alzheimer’s dementia) or those who disease course is marked by life-threatening exacerbations interspersed between periods of relative stability such as congestive heart failure of chronic pulmonary disease. ⁽²⁴⁾ This tragic trend impacts care of patients with cancer as well. As advances in oncology offer valuable palliative options to extend and improve quality of life patients with far advanced illnesses such as ovarian cancer, breast carcinoma and certain lymphomas, existing regulations and payment structures limit access to the comprehensive programs of palliative care that hospices represent.

Another adverse effect of the prevailing regulatory and payment structure limits the scope of hospice services and, by extension, the scope of palliative care available to patients. The capitated, per diem payment structure of the Medicare Hospice Benefit makes no allowance case mix adjustment and, therefore, imposes severe financial strains on hospice programs when patients require extremely expensive palliative interventions. In the pursuit of comfort and quality of life, appropriate care should exclude no intervention on the basis of intensivity or cost, the only test lies in the balance of risks to potential benefits in terms of advancing the patient’s own goals. Under existing payment structures, the costs of important palliative interventions, such as external beam radiation therapy, injectable radioisotopes, use of colony stimulating factors, 5-HT3 receptor blocking antiemetic agents, neurolytic blocks and surgical procedures can threaten the very survival of hospice programs, especially smaller programs. It is ironic that at present, patients may be forced to decline or even revoke hospice services to receive these valuable and therapeutically appropriate palliative interventions.

Beyond the dichotomy: a mixed-management model integrating palliative and life-prolonging care

Acknowledging the imperfection of the world in which we live and the systems in which we practice, physicians are, nevertheless, challenged to provide the best care possible for patients and their families. In the prevailing “real world” context of practice, advocacy and coordination of services and care are critically important roles for the health care team. Care management is increasingly recognized as an important service and strategy for improving the coordination, quality and efficiency of care.

At present curative therapy and palliative care are perceived as dichotomous. Decisions regarding life-prolonging therapy and palliative care tend to be presented in an “either-or” manner. This misperception is reinforced by Medicare regulations and corresponding requirements of some health plans and insurance policies that impose a choice between any further potentially life-prolonging treatment and the comprehensive programs of symptom management, supportive care, aide serves and financial benefits, such as paid prescriptions, that hospice programs provide.

As a result, currently comprehensive palliative care is often instituted only after life-prolonging care is no longer available or has been rejected by the patient. [Fig 1] Within the culture of healthcare, in which cure is the highest value, hospice and palliative care are typically viewed as second-rate alternatives, apologetically presented to patients when better options are not available. However, the precepts of palliative care emphasize the importance of continuity of care and emphasize symptom management and skillful communication and psychosocial support throughout the course of illness. Correctly understood, palliative care represents a “both-and” model of care in which a smooth transition from mostly curative to mostly palliative interventions are the norm.

The continuity of palliative care within the management of patients with progressive cancer is well represented by a simple diagram within the W.H.O. monograph. [Figure 2] As a patient’s disease advances and there is proportionately less to offer in terms of life-prolongation, it is logical that the focus of care should progressively shift toward the goals of comfort and quality of life. Thus, despite the apparent dichotomy resulting from the prevailing reimbursement structures, palliative and life-prolonging efforts well complement one another and can properly proceed simultaneously.

The principle of proportionality, 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 currently experienced quality of life form the fulcrum for this ongoing decision-making process. Note that even at the very end of life, some life-prolonging measures may be warranted if they have potential for advancing the persons goals and a risk that is deemed acceptable. These treatments are represented by the area above the diagonal line in the upper right corner of the W.H.O. diagram. Here again, the potential benefits of a therapy must be weighed against the “costs” in terms of potential discomfort, quality of life and personal goals. A patient bedridden following a spinal cord compression from extra dural metastases, who is deriving value from her present quality of life despite severe functional compromise, might thoughtfully decline hospitalization or intravenous antibiotics should a future pneumonia or blood borne infection occur, yet might accept antibiotics by mouth or enterostomy tube. Similarly, and without incongruity, the same patient might request a yearly influenza vaccine, fully understanding that it is a life-prolonging measure, albeit with minimal risk of either discomfort or life-shortening complications.

The process of ongoing care planning involving the patient with his or her family underpins this mixed-management model of care. At each point from diagnosis through death, the patient or surrogate has the right to make informed choices among all indicated and available options for care. By introducing the concept of palliative interventions aimed at comfort and improving quality of life early in the treatment discussions, physicians can build a foundation that supports continuity of care that extends through the end of a patient’s life and to the family during bereavement. Advance care planning includes completion of documents such as a living will, conveying an individual’s preferences for care and a durable power of health care, formally appointing a proxy to make decisions if the person is unable to decide for himself or herself. Increasingly, the term advance care planning is also being used to refer to the iterative process of assessing the patient’s and family’s needs, discussing the risks and benefits of each therapeutic option and making decisions for the short and mid-term future.

Even at the time of diagnosis, physicians must not assume that every patient confronting a serious, life-threatening illness will choose aggressive life-prolonging care. Some patients will carefully consider all options and decide to forgo curative or remissive therapies despite a fair chance of success. The process of informed consent requires active involvement by physicians and the ethics of decision making allows for strong recommendations on the part of physicians. Ultimately, however, it is the patient or appropriate surrogate whose choice among available options must prevail. Patients and families deserve the best information available, in words they can comprehend, and they deserve clinician’s recommendations throughout the course of illness and treatment. Within the ongoing process of care planning, it is the persons served who appropriately determine the proportion of life-prolonging to palliative treatments within the continuum of care at any point in time.

Conclusion

Contemporary palliative care reflects an understanding of dying as an inherent part of life and as a profound personal experience for the individual and family. Clinicians in oncology have essential roles to play in ensuring comfort and enhancing the quality of the dying person and the family’s life. Pain and other sources of physical distress associated with far-advanced disease can always be alleviated. Suffering that arises from deeply personal and spiritual or existential sources are clinically approachable. The first step is to acknowledge the person’s suffering by listening in a skillful manner. In addition to acknowledging the capacity for human suffering at the end of life, hospice and palliative care recognize dying is a time of remarkable opportunity.

In caring for patients without denial about the inevitability of death, by caring within a team of committed providers, by being fully committed to doing what is necessary to achieve relative comfort and by acknowledging the lifelong human capacity for growth clinicians can contribute to a healthy reincorporation of the value of dying within the mystery of life.


Table 1

Table 2

Figure 1

Prevailing dichotomous model of curative or life-prolonging and palliative care

          
At the time of diagnosis                                                                                         Death

Fig 1. adapted from Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization, 1990


Figure 2

Integrated mode of palliative and life-prolonging care

          
At the time of diagnosis                                                                                         Death

Figure 2 adapted from Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization, 1990

Bibliography:

(1) Lynn, J., Harrell, FE, Cohn F, et al: Defining the “Terminally Ill”: Insights from SUPPORT. Duquesne Law Review 35:311-336, 1996

(2) Field, MJ, Cassel, CK (eds): Approaching Death: Improving Care at the End of Life. Committee on Care at the End of Life, Institute of Medicine, National Academy Press, Washington DC, 1997

(3) American Society of Clinical Oncology: Cancer Care During the Last Phase of Life, Journal of Clinical Oncology, V. 16 No. 5 (May), 1998, p. 1986-1996

(4) MacDonald, N: The interface between oncology and palliative medicine, in Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine 2nd Edition New York: Oxford University Press, 1997 pg 11.

(5) Saunders, CM: The management of terminal disease, Vol 1. Edward Arnold, London, Year Book Medical Publishers, US. 1978

(6)Twycross, RG, Lack, SA: Therapeutics in Terminal Care, Churchill Livingstone, New York, 1986

(7) Twycross, RG: Symptom control: the problem areas, Palliative Medicine, 7 (supplement 1) pg 1-8, 1993

(8) Levy, M: Pharmacologic Treatment of Cancer Pain, New England Journal of Medicine, V.335,No. 15, October 10, 1996, p1124-32

(9) Truog, RD., Berde CB, Mitchell C. Grier, HE: Barbiturates in the Care of the Terminally Ill NEJM Vol 327, No 23, pp 1678-1681 1992

(10) Greene, WR, Davis WH: Titrated Intravenous Barbiturates in the Control of Symptoms in Patients With Terminal Cancer So Med J Vol 84, No 3, pp 332-337 March 1991

(11) Byock, IR: Consciously Walking the Fine Line: Thoughts on a Hospice Response to Assisted Suicide and Euthanasia” J of Pal Care 9:3 pp 25-28 Autumn 1993

(12) National Hospice Organization: Standards of a Hospice Program of Care, The Hospice Journal, Vol 9(4) 1994 pp 39-74

(13) Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization, 1990 pg 11

(14) Byock IR: The nature of suffering and the nature of opportunity at the end of life, Clinics in Geriatric Medicine. 1996; 12: 2-10

(15) Precepts of Palliative Care, Task Force on Palliative Care, Last Acts Campaign, Robert Wood Johnson Foundation, J. of Palliative Med. Vol 1, No. 2, 1998 pg 109-112

(16) Critical Pathway]] National Hospice Organization Standards and Accreditation Committee: A Pathway for Patients and Families Facing Terminal Disease. Arlington, VA: NHO, 1997

(17) Christakis, Nicholas A., Escarce, Jose E: Survival of Medicare Patients after Enrollment in Hospice Programs, N Engl J Med 1996; 335:172-8

(18) Kinzbrunner, BM: Hospice: 15 years and beyond in the care of the dying, J. Pall Med Vol 1(No2)pg 127-137 1998

(19) Anders, G: U.S. Cracks Down on Hospices Treating Patients Who Aren’t on Brink of Death, Wall Street Journal, January 8, 1997

(20) Babcock, CR: Hospices Big Business, Thanks to Medicare
Exploitation of Some Patients Is Alleged, Washington Post, June 14, 1998; Page A01

(21) Fraud and Abuse in Nursing Home Arrangements with Hospices. Special Fraud Alert, Office of the Inspector General, Department of Health and Human Services, March, 1998

(22) Medicare Hospice Beneficiaries: Services and Eligibility, Office of the Inspector General, Department of Health and Human Services, OEI-04-93-00270, April 1998

(23) Davie, K: Press Release, National Hospice Organization, April 21, 1998

(24) Schonwetter RS, Soendker S, Perron V, Marin B, et al: Review of Medicare’s proposed hospice eligibility criteria for select noncancer patients, Am J Hospice Pal Care May/June 1998 pg 155-158

Completing the Continuum of Cancer Care:
Integrating Life-Prolongation and Palliation

CA - A Journal for Clinicians, Vol. 50, No. 2, March / April 2000, pp 123-132.
Ira R. Byock, M.D.
Director, The Palliative Care Service
Research Professor of Philosophy, Practical Ethics Center
University of Montana
Missoula, Montana

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